RugbyHubby

My AT&T Diatribe

2012-01-15T13:34:00.001-05:00

First - an update - I'm fine. Ok, a little more than that - numbers were trending up to the high part of normal but then broke back down again. I'm 2 years in Near CR and everything else looks kosher but am expecting that at some point my numbers will get above normal and I'll have to address then. Bottom line, a bone marrow biopsy done in Nov'11 shows less than 5% plasma cell penetration - which is actually normal. However, when you look deeper, you can tell the cancer cells are there and still active - but I'm keeping it at bay. And now for my 10 minutes of bitching at AT&T!

I've had an iPhone since day 1 (well, month one, not day one). I was holding off on upgrading my 3GS until the 5 came out but alas, that wasn't to be and they only came with a 4s. My wife surprised me w/ the new phone two days for Christmas and I love it (i'm an apple fan!). I did exchange it for the 64gb but beyond that, aside from getting it authorized, I didn't (and wouldn't) involve AT&T - that would only screw things up.

I go online, I know what I want, I haven't touched my AT&T contract since my 3GS upgrade and I'm spending well north of $150/month for our two contracts. Then I got my most recent bill - THE FREE UPGRADE FOR MIGRATING MY ACCOUNT COST ME $18.00. At this, I emailed AT&T and asked them why - here is their response:

Dear Mr. M,

Thank you for taking the time to e-mail AT&T regarding the upgrade fee. My name is Kellye Johnson, and I am happy to help you with your inquiry.

Mr. M, the $18 fee is to allow us to assist customers with recommending new equipment, offering special offers and discounts, providing assistance with the upgrade process if needed, and supporting the returns process within 30 days. These specialized processes help us to ensure you are satisfied with your new equipment, and are ready to use it the day you receive it. The upgrade fee allows us to defray some of these additional service costs.

I encourage you to visit our web site (www.att.com/wireless) often to view current and previous monthly statements, make payments and to shop for new product and service offerings.

If you need to contact us again regarding a new issue please send us another email via the contact link through your online account.

Mr. M, we recognize that you have a choice in wireless providers and we thank you for choosing AT&T and being a valued customer for several years. My name is Kellye Johnson, and our goal is to continue to provide you with excellent service.

Sincerely,

Kellye XXXX
AT&T
Online Customer Care Professional

I DON'T need their recommendations (more would I listen to them); NONE of their special offers affect my purchase of the iPhone (they only offer on droid, berry, etc.); they ONLY flip a switch, and in my case had to flip it ON, OFF, and ON again; the return process was NOT done through AT&T (again, they just flipped as switch, see above). I DON'T see those costs needing to be "defrayed" and I would switch services but I really like the technical service (NOT, in ANY way, the customer service, from AT&T).

I had to speak my piece and will post a link on Facebook asking for anyone willing to pass it along as my one way to show AT&T that loyal customers use examples like this to seriously think if they've made the correct decision. This doesn't help a charity and doesn't do anything else of ready import - but if you've had a similar experience, pass this along w/ your note!

Thanks for reading!

Bill

Dana Farber Study on MM Cancer Inhibitor

2011-09-09T18:49:00.000-04:00

This is an interesting story - still years from being offered but it seems like extremely great news. Also reminds me to read these monthly emails I get from DFCI!

Read Story Here

Breast Cancer

2011-07-06T23:23:00.001-04:00

Thank you to Sandy for her comment on my last post. As my post occurred on a holiday (in the States) weekend, I forget that people might not see my blog till later in the week or it might get crushed with all the other updates people get. So to Sandy's point, a little more color, but first, apologies for the reiteration, but here's the details I posted previously.

(repeat from prior post - new information below)

My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She's 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She's scheduled to get TC in four cycles (I believe). But she's scared of the chemotherapy and not thinking of what could happen if she didn't get the chemo. On a scale of 1-50 she's a score of 23, so about halfway. She has cancelled one appointment and I've not yet heard if she's gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a "speedy" night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.

Now this blog has been mostly about MM but being scared of chemo knows no borders - just some chemo is more of an annoyance than others. What I'm looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.

(more details)

Sandy brought up a point that my cousin may be in denial (most definitely) while also being scared of the drugs, their effect, etc. She can't take tylenol/codeine without feeling like she's on a 70's acid trip. But again, I think that's being more scared than anything else. Regarding Sandy's comment about getting online and taking control - well that's a bit of a problem as, until 2 weeks ago, she didn't have an email address. She's sent me one email (the night the Dex hit her!) and she's not yet responded - most likely due to the fact she doesn't know how! She does have a son and daughter that can assist with email but I need to call her to get her more info. Regarding family, her sister is a nurse (oncology I believe) so she has resources but she follows the clan with her stubbornness! At some point she'll read this and probably hate me but I'm hoping the information I get from my blog readers is such that she'll thank me in the long run!

If you have any feedback (Sandy, thanks for the start) I'd much appreciate it. Please leave a comment and let me know. Again, thanks for reading!

Bill

Vacation, Retraction And Assistance Desired

2011-07-04T16:05:00.001-04:00

It's the last day of vacation and all my peeps in Belfair are asking for an update or at least some sort of post as it's been so long. I have nothing in particular to say, as I try and navigate this Star Trek keyboard on my new iPad, but do need to cover three things. First is I need some assistance from all my readers.

My cousin was recently diagnosed with breast cancer, has had a tumor removed and is now facing chemotherapy. And is scared shitless!
She's 54, the tumor was about 3cm, upon removal they were able to identify trace amounts of the cancer in the lymph nodes. She's scheduled to get TC in four cycles (I believe). But she's scared of the chemotherapy and not thinking of what could happen if she didn't get the chemo. On a scale of 1-50 she's a score of 23, so about halfway. She has cancelled one appointment and I've not yet heard if she's gotten a second yet. In prep for her first round they had her on dexamethazone and failed to warn her of the effects. She took it at 1630 and was on the phone with me flipping out at 0230. Had she known what to expect she could have been prepped for a "speedy" night but not knowing, her only focus was the chemo and what could go wrong. She ended up canceling her appointment the next day.

Now this blog has been mostly about MM but being scared of chemo knows no borders - just some chemo is more of an annoyance than others. What I'm looking for is examples, feedback or words of wisdom I can pass back to my cousin. Whether it be about chemo, breast cancer or anything else relevant, please post a comment so I can pass them along to her. Any help would be greatly appreciated.

Regarding my retraction, on Mothers Day I wrote a lengthy diatribe about my Aunt and her reaction to mothers day with us. She promptly told me that what I had written was not correct. While her mother (my grandmother) was alive she usually coordinated the mothers day festivities but after her passing she was taken out by her husband and boys. Her remark to my mother was simply saying thanks as she was so welcomed on that special day. I can only add that it was our pleasure. Family is too important for not getting together when possible and keeping in touch always!

Speaking of family, were finishing up a week with my folks and my brothers family as well. It's great to see the kids together and "Story Time" at night with Nana. The kids were in golf camp all week so the parents got "sanity time" to relax, hit the outlets, or workout. And each set of parents got a day off as well - my wife and I got massages and a day together while my brother headed locally for a night in Sanctuary! All in all it was a greet week and ends tonight with a big 4th BBQ at the club. No real fireworks but thats fine. Unfortunately we leave at 0800 tomorrow and are back at work on Wednesday. So we'll need to chalk this up as another great memory and hope our batteries are recharged enough to last till the next vacation!

So for now, thanks for reading and please get back to me (comment) regarding breast cancer, chemo, etc so i can pass this along to my cousin!

- Posted using BlogPress from my iPad

Life Of A Blog Writer and His Family

2011-05-22T00:46:00.000-04:00

I started my blog after I found out I was diagnosed with Multiple Myeloma in October of 2008. Having a blog allows you to jot down your thoughts and not have to worry about whether or not you included all the right people in the email. Having said that, there's a certain responsibility with a blog - to keep it updated. I'm not a journalist or a writer (though, at times, I have had the odd post that has garnered a compliment) so I don't have to deal with that journalistic integrity crap! But I know I have readers - some I know, and many I don't. My original purpose was to put everything down on 'paper' so that i've thought it through but mostly so I don't have to tell my mother the story over and over (unfortunately, that result has yet to be achieved.)

If I was keeping a blog on tech then not knowing when the new iPhone was being released would diminish my respectability as a tech blogger. If I was writing about world peace (something I know nothing about) then, again, I wouldn't be keeping up with the times and keeping my readers involved or aware of my vast knowledge of the subject, especially these days. But when you have a blog related to a disease like cancer, not updating your blog raises the first question that nobody wants to ask..., "is he still alive?" Luckily, I've tried to update my posts with the actual fact - I'm alive, i'm in complete remission (touch wood) and doing well. But don't say anything for a few months and the same question comes to mind. Unfortunately, you can't help but ask it.

At first, and even now to an extent, it is difficult to follow a blog of a cancer patient. You get close, very quickly and if something were to occur, your thoughts turn immediately to yourself. And that's scared the living sht out of me at times. I feel I'm somewhat over that and, as Dr J told me, it's time to get on with life. You've gotten control over this miserable mess, do your monthly, keep yourself fit and get on with life. And now I'm back in the regular work swing, I have my monthly bloodwork and Rev maintenance; my quarterly local checkups; and my bi-annual checkups with DFCI. Those are just a few hours or days and, unlike when I was taking my frozen sushi or going through chemo or losing my hair - there just aren't as many good stories to tell. And frankly, there's just not enough time in the day, especially with a 7.5 and 4 year old (and cub scouts, dance recitals, etc.) So now it's late on a Saturday and while jogging this morning I had this idea that I needed to explain this to everyone (or anyone that's willing to have read this far!)

I am doing fine - and I find myself quite lucky for that fact. But then I turn to others that are having a tougher go at this, I really count my lucky stars - as well as turn my prayers to them. For those that have gone down this same path, creating a blog to document this pain in the "bone" (sorry, really bad MM joke), remember to add a note here and there to let everyone know you're still kicking some MM Butt!

Now - a complete switch in topics - Mothers! If you've not spoken to your mother in a few months stop reading this and call your mother - or at least send her an email! I'm a bit late with this post, with mother's day a few weeks behind us, but it is something I need to say. Every family is dysfunctional - that's what the F in family stands for (dysFunctional!) I grew up with a grandfather that feuded with his brother and, until Facebook, an entire branch of the family tree is missing! His brother's name is on the moon for Christ's sake (he was proud enough to tell us that but still wouldn't talk to him!) And for this to fester and grow through the generations is just miserable. All of us have read stories about families, immigration, where you came from, etc. - that connection to the past helps define the present. I've been trolling through my parents attic getting pictures from years gone past and trying to understand who all these people are and seeing them in a completely different light. My only memories of my one grandfather were playing gin rummy while he smoked his Marlboro Reds and stuck his dentures out so I'd miss a trick. Now I have pictures of him in uniform holding my mother at an age 2 years prior to my daughters current age. You start to see parts of life that helped create who you are today.

Now I'm focusing on all aspects of the family but I started this diatribe with mother's in particular. On this most recent Mother's Day I was lucky enough to have my Aunt present as well (and it was my son's first communion weekend as well). Her first comment was, "I don't want to be in the way for your big day." My only response was, "huh?" This is family, and you only get one of those - for good or for bad. Having her present allowed my kids to see a different aspect of our family, and where I'm sure they didn't pick up on it now, it will be a memory they will have, and respect, years later. I show my son pictures from when I was his age and ask him to smile so he can show his kids similar pictures and have similar memories and thoughts (and not that smirky fake smile!) So my Aunt was included in our festivities and she was overwhelmed with grandkids galore (not having any of her own.) To my surprise, I was told later that she had never gone out for Mother's Day dinner. WTF?!? Sure, my mother is a pain in the ass (love ya mom!) but it's mothers day - if she's near, you better damn well have breakfast or brunch (or suffer weeks of misery!) It was something that amazed me; but brought up the fact that too many people seem to get it in their head that how they feel, right now, is more important than the fact that blood is thicker than water - these people are the only family you have, think of the big picture. It's bad to let distant family grow too separate. But immediate family is too important. If you're in town, you better damn well let me know or I will be pissed! I will make time to see you, as I remember when you changed my diapers!!!

I joined Facebook after I left Asia as it was the only way to keep in touch with an expat audience who had a temporary email address (once they moved, the @netvigator.com address was a bounceback). I was able to keep in touch with a group of friends near and dear to me. Now that's spread to put me in touch with family I've never even met! My father was amazed that I send a Christmas card each year to his cousin. I've never met her but her father's name is on the moon for Christ's sake! That's cool! And we're related! Better yet, I saw a picture of her grandson, who is 8 and is taking TaeKwonDo, just like my son! I want him to know this boy and maybe one day trade stories about family and what each remember so they can compare notes and make fun of their parents.

We have a bizarre occurrence in our family that rivals Kevin Bacon's six degrees of separation. It seems (just like my grandmother used to find) that we somehow know everyone and have some sort of connection. But when it's a connection through family that makes it even stronger. In scanning these attic photos I came across one with kids in their Sunday best but the year identified in the photo didn't fit with the people or who I thought they were. After realizing this, I found out it was actually family I'd never met, but who's son (whom I had met, in Scotland, once) I share a birthday (my cousin). I then got an email from his father saying he remembered that day (and he was the second from the left in the picture) and that they could only afford the photographer if three families got their pictures done at the same time. You can't make this stuff up - and it's family.

So enough from me - go call/write/email your mother - NOW!

(I know, I had this same rant about friends so feel free to call them as well!)

bill

The Maintenance Continues - All Is Well!

2011-04-13T22:40:00.000-04:00

I can't even remember what month of maintenance Rev I just finished. Bottom line, all is still good. I was a month late but went in for my Zometa today. I'm not sure if it was the Zometa (doubt it) or the 11 hour days at the office and 3 hours more at home that knocked me out for the rest of the day today. I came home and passed out. Now I'm hoping that doesn't keep me up all night tonite!

So the good news is everything is looking peachy and I've got nothing bad to report. The bad news is between work and kids I have no time to update so apologies to those that have been wondering if anything is going on. Trust that if something WERE to occur, I would be updating immediately (if for nothing more than to get my mother off my back!) And speaking of motherly segue's - here's a question that "a friend of hers" asked (those quotes are the ones you make over your head w/ your fingers to imply sarcasm!): what's the difference between a PetCT, CAT scan and an MRI. Well Google has done it again. I will completely plagiarize the source but I will also give a link and full credit in advance. But I think this is a fairly good lay-person's description of the tools.

(thank you to springboard4health.com and their article linked here.)
January 19, 2000

CT Scan, MRI and PET Scans…What are the differences?
CT, MRI and PET scans are all diagnostic tools to non-invasively (non-surgically) look inside the body. They are all based on the fact that certain things happen to atoms in our bodies when they absorb energy. Resonance refers to the level of absorption achieved by adjusting the frequency of the radiation and the strength of the magnetic field – like tuning a radio to a particular station.

CT (computerized tomography) uses a sophisticated X ray machine combined with a computer to create a detailed picture of the body’s tissues and structure. Usually a special dye called a contrast material will be injected prior to the scan. This makes it easier to see abnormal tissue due to specific absorption rates.

Nuclear magnetic resonance is produced by measuring the magnetism of spinning electrons and protons and their interactions with nearby atoms (usually protons) when they absorb energy. This provides information about the chemical structure of organic molecules. The use of the word “nuclear” has recently been avoided and Magnetic Resonance Imaging (MRI) is now preferred. MRI uses a magnetic field from super-cooled magnets and can often distinguish more accurately between healthy and diseased tissue. A contrast agent is usually used. MRI can provide pictures from various angles and construct a three dimensional image. Some patients who have received certain types of surgical clips, metallic fragments, cardiac monitors or pacemakers cannot receive this type of scan.

Positron Emission Tomography (PET) scans measure emissions from positron-emitting molecules. Because many useful, common elements have positron emitting forms (carbon, nitrogen, and oxygen), valuable functional information can be obtained. This is the main difference between the CT and MRI scans. The PET shows molecular function and activity not structure, and therefore can often differentiate between normal and abnormal (cancerous / tumor) or live versus dead tissue. Like SPECT (single photon emission tomography), PET also can product three dimensional images, and is usually used to compliment rather than replace the information obtained from CT or MRI scans.

Ode to a Jets Fan (my wife)

2011-01-16T22:10:00.000-05:00

I've been to a variety of sporting events in a large number of places around the world. I sat in awe in Wembley during the five nations (it was still the Five Nations as Italy hadn't grown enough yet to join), two hours before kickoff, listening to the songs being sung by 10's of thousands. I've been to cricket matches, NFL games, hockey, baseball, etc. But I'm not sure if I can say I've ever found a more superstitious fan than a Jets fan.

Tonight, the Jets played the Patriots (New York/New England (Boston) for those over seas) in American football (the NFL or 'Gridiron' in Oz). The Patriots have been a stellar team this year, spanking the Jets on the last outing. And the Jets have this amazing history (sans the last 2 years) of being a woulda, shoulda, coulda team, offering moments of brilliance followed by eons of agony. But this year (potentially two years) the tide has changed - but that doesn't change the fan!

My sister-in-law has a history of getting Christmas presents of a Jets jersey. The year she gets the jersey from her favorite player he either becomes injured or is traded away the next season. We have friends that have to watch the game from certain locations (not just the home in which the watch, not the TV upon which they view the spectacle, but down to the chair in the house where they MUST sit to view the game.) My wife believes she must be in the kitchen cooking in order for the Jets to win. Which means the rest of us get to watch the game as well as be fed, but she cannot view the TV more than the time it takes to bring the food to the table or the buffet.

On my last post I mentioned the cold that comes around goes around. Well, my wife got hit with this nasty bugger this week and has been miserable. An ugly chest cold where on Thursday she just didn't sleep (nor did I get much either). Friday I went out and got her some cough medicine but it didn't much help. And she was too sick to teach church school today. That being said, IF SHE'S NOT COOKING, THE JETS WON'T WIN! So she invited a few families, including kids, over for the game and she cooked. And cooked, and cooked, and then cleaned. She watched the final 1:24 seconds (when the game was essentially won) but was missing the rest of the entire match. All this while barely being able to speak due to her throat being so raw! Six bottles of wine, just a few (8) bottles of beer, and a half bottle of grappa (my recommendation upon the end of the game) later my wife had drank nothing but water but served tortellini, salad, faux fried (baked) chicken, and sauteed asparagus. Along with dessert, etc. I was responsible for cleaning approximately 7 forks, a serving knife and taking out the recycling (which will hopefully gain the respect of the porters in our building with all our bottles - The McHugh's always throw a good bash!), my wife did the rest!

Although the comment was made that Rex Ryan threw out a thank you to Lillian for hosting the party that helped make the decision, it was quite funny throughout the night. K was not allowed to NOT drink white wine - the minute she switched to seltzer things started looking bad. When D got up and started drinking wine he was ordered to get a beer and sit back on the couch. My wife was recommended to return to the kitchen multiple times. One of the mothers of British descent (who doesn't much care for NFL and arrived late) was almost asked to go back home. And one of the kids was made to stand at the end of the TV with his hands up and fingers crossed for much of the game.

But through it all, my wife was the stalwart, cooking, cleaning and making everyone happy behind the scenes. I wasn't allowed to leave my seat (and luckily my switch to an IPA was met w/ a fumble and turn-over to the Jets or I would have had to drink that nasty French wine I put out!) The only concern I have was the graphic that came up on the television, after the Jets had won, announcing that the Jets would next play on Sunday, 1830, against the Pittsburgh Steelers, to which one of the fathers replied, "So we'll see you around 1730 next Sunday?"

J-E-T-S -- Jets, Jets, Jets!

What goes around, comes around, again and again!

2011-01-14T23:05:00.000-05:00

On the 19th of December I started getting miserably sick thanks to my young daughter and her pretension to sleep in our bed, while sick, and then cough directly into my sleeping face! I still lover her miserably! I started a z-pack on 20th Dec when I got a small fever. On Wed the 22nd I had a fever of about 101.8 and went to see my friends at Mt Sinai. All was fine but I was given Avelox, that wonder drug that I was given during my stay for the harvest that looked neon green, similar to Prestone anti-freeze. This time it was in oral form, 10 days, quit after 5 if you're ok, just make sure no less than 5. So I went the entire 10 days - to be safe.

It's now the 14th of January, and I feel the code coming back full strength. I'm taking my VitC and doing the listerine and nose rinse to keep things neat and tidy and try to fight this back. Unfortunately, my wife has been hit hard, similar to me the last time, but I can't blame it on her. You see, my daughter, who still has the same cough/cold she had 7 days prior to the first time I was sick, snuck into our bed on Tuesday last. And in the middle of the night, while snuggling close, SHE PROCEEDED TO COUGH DIRECTLY IN MY FACE! But I still love her miserably!!!

I was in Boston the week prior. Met with the Docs at Dana Farber. The good news is that on our next visit they will have all new digs and a much comfier/cozier waiting room. The bad news is I won't have as much time to write such glowing bloggery as I did that day! On a serious note, though I haven't gotten the actual numbers back yet, everything looked great. A few quick notes that may be good reference to others that are in a remission:
* I'm on a 10mg Relivmid maintenance, 21 day son, 7 days off. I will continue this for the foreseeable future. The original thought was to potentially ween off the drugs altogether but I don't see that in the near term.
* I've been asked to maintain regular treatments of Zometa (bisphosphonate) at every three months. There has been a recent study that shows newly diagnosed Myeloma patients have a greater "overall survival" (OS) and "progression free survival" (PS) rate when on a regular routine of zoledronic acid (Zometa). If you've not been given this advice and were recently diagnosed, take a look at the study and ask your doctor
* Annual skeletal study and PetCT exam. Now insurance here in the States needs to approve the PetCT but the goal is to look for lytic bone lesions (xray) and anything else that may be forming that wouldn't be caught in in an xray (thus, the PetCT). That's scheduled, for the first time, at Mt Sinai next Wednesday. No food/drink four hours prior to the study and then a beautiful barium cocktail just in time to sit in a donut and listen to bizarre noises! But I'd rather know than not!
* continue my cycles, monthly bloodwork, and regular checkups!

So for now, all is good and I'm pleased to make that statement. On a different note, one of my colleagues is working on his MBA and needed to do a study on online advertising. So currently, my blog is being advertised when you do a search for Myeloma and a variety of other keywords. So if you see my blog listed on one of those "sponsored links" it's all in the name of edumication! Thanks all for reading and hope to have more fun updates in the very near future!

Hotel Review

2011-01-04T15:46:00.000-05:00

We recently went to Disney with the kids. I've always been a big fan of the house of mouse as service is top of the line. Well today I headed up to Boston to see the Docs at DFCI for my six-month check-up. On a prior visit we had stayed at the Westin Copley and the stay was extremely mediocre - I felt like we were staying for a convention.

This visit we stayed at Fifteen Beacon, downtown, near Beacon Hill. Upon arrival they were wonderful. When mentioning I needed to get to DFCI they offered the hotel car. They set us up w free wifi, got us dinner ressies and offered us a double upgrade (for the price of a single.) Fireplace in the room, "boutiquey" and hip decor, the place was a real find and worth the price. I highly recommend if you're looking for a place in Boston that's in the center but a little more relaxed and less "conventioneer" feeling!

But in the same vein, good friends can offer a similar experience. I got a bizarre email from a friend I hadn't spoken to in years yesterday. I responded jokingly that he had been hacked and someone had spammed his address book as he'd never be capable of such a heartfelt message! He immediately called me!

He had been through a rough patch recently with a bunch of back to back medical procedures and had been doped up pretty well. Unfortunately he probably liked that part too much and when he finally had to come down it was a long way down! He dropped into a funk and closed himself off from the world for quite awhile. The recent "spam" was his debutante announcement, entering back into the real world.

We chatted today and it was just another reminder of how friends are friends, no matter how distant. You may not speak for years but when you do, it's as if you had spoken only yesterday. Don't ever forget this fact - it's an irrefutable fact of life. It's also one of those things that can get you through those tough times.

I've been very lucky during my ordeal in that I've avoided the black hole of depression and "why me" that could have embraced me. I can't say exactly why except that I have family that loves and supports me (and puts up with me) as well as friends that all have a glass half full (with another pint in waiting.)

I have had my trials and tribulations in the blogosphere. When first starting this blog I was trying to find a picture of the catheter that would be used in the harvesting procedure. I found a perfect shot and prior to publishing I wanted to get permission from the blogs owner. Not being able to find an email for the author, I went to the most recent update. Only to find out the author had died three months prior. That was my first view into that black hole and I shut it down immediately! For that reason, I didn't pay attention to other blogs (my mistake) as the thought of getting to "know" someone that may not be there in the immediate future opened up that door to the void again.

Well f_ck that! Friends are friends, whether they're personal or blog-linked, and I need to remember that and ask that everyone else do the same. Life's too short to not enjoy friends, family and a good hotel!

Now go shoot an email to a friend or family member you haven't spoken to in awhile. You'll feel better having made the effort and if you're scared to do so...comment here and I'll send them a message!

- Posted using BlogPress from my iPhone

A Turkey Ate My Homework!

2010-11-25T10:00:00.000-05:00

Ok - so it's been a long time since I've posted and I apologize. From a MM standpoint I'm the same: in CR and my numbers are still going well. I will begin my 10th cycle of maintenance Rev (15mg) soon. I was supposed to start it last Monday but issues w/ renewing the prescrip w/ CVS, etc. caused me not to get the 'scrip till yesterday. Now the debate is whether to start today or tomorrow or wait and start on Monday to get back on my regular schedule. There's a few things to consider:
a) Rev is known to cause constipation - today is 25 November - that could be an issue.
b) If I start on a Thurs I need to have my bloodwork done and scrip renewed by Wed in order to receive the next dose on a Thurs for the next cycle.
c) If I postpone till Monday then my cycle has been 21 on and 14 off.

I'm opting for c) as I believe it gives me the best option to get back in the regular swing of things.

Now the original reason for this post was to simply say (to those in the US) Happy Thanksgiving!!! For those outside of the States - Happy...Day! Hope you have some turkey!

Think about what you're thankful for and be happy! I'm thankful for my kids (who want everything shown on every commercial for Christmas), my wife (who puts up with me in numerous ways), my Mom and Dad (one who wears the rose colored glasses and the other who balances the rose!), my relatives, my friends, the people reading this blog, and of course the docs, nurses and everyone else that's gotten me to a wonderful place in the midst of this mess of a disease. I've got a lot to be thankful for and am going to do my best to pass those thanks on!

Best wishes to everyone out there fighting this fight! I hope everyone has the opportunity to be as thankful as I am! Happy Thanksgiving! Go eat some turkey!!!

Bill

Not Much To Update

2010-09-21T22:07:00.000-04:00

Well there's not much to say - and that's actually good. I'm finishing up Cycle 7 of my maintenance chemo of 15mg rev and I've gotten off everything else. No more Lyrica, no more Nortriptylene. I think the Lyrica (the last to go) was actually causing the weight issues I was facing. Since stopping I've dropped about 7 pounds. I'm getting up early and doing my best to knock out a few pushups and situps but I can't really say I'm "working out" but I'll take it for now. Unfortunately, I can't play rugby (our Old Boys are into their 2nd match of the season and I've not been able to get out for one) so my effort to get fit (so I can embarrass myself on the pitch) is even gone! But I'll get there.

I'm considered to be in a complete remission now. The maintenance won't go away, but will decrease dosage at the end of the year and continue on as needed (slowly weaning off the teat of Revlimid). I now see Mt Sinai every month (for bloodwork) but the doc every three. I'm at DFCI every six months, just to keep them in the loop on how I'm doing. I'm taking Zometa for protection, every three months though there has been some debate between the two doctors about how often that should be done.

So now life is getting back to normal and I consider myself lucky. My son (7) has started his soccer (football) season and I was elected coach - rather, school marm. I send out the emails, try to get everyone there on time, get the kids to kick the ball back and forth to each other until the real coach shows up and puts them into drills! Now I get the biggest challenge of my life - explaining the concept of good sportsmanship to your seven year old! Funny that daddy's stories of rugby don't quite cut it ("just because we lost 65-nil we didn't storm off the field upset, rather we went to the pub and got cracking drunk together") I'm thinking of bringing juice boxes so that we can pass out drinks to the other team after the match but I'm not quite sure it will have the same effect as a nice pint or two.

Beyond that, work is extremely busy and the market here in the City sure is tough. There are many people I know looking for work. I consider myself luck to be busy and have a job - too many people I know that don't have either.

Off to Mt Sinai tomorrow to get the blood checked, confirm my numbers and get my Rev renewal. Hopefully I won't be so long between postings next time. Cheers...

In the end...

2010-09-03T15:49:00.001-04:00

I arrived at 11:05
I am done and departing at 15:49

What a mess!

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Help me ObiWanKenobi

2010-09-03T13:05:00.001-04:00

I just overheard the receptionist, "I have Mr McHugh standing here and I don't have his chart or any orders" "yes. No, no I don't see it. What, he brought it over? Oh wait, here it is. You're absolutely right. I've got it." "MR MCHUGH?"

Now were going on a tour of the treatment areas, nope, no seat there. Not there either. Oh look that seats taken as well. Why don't you wait here NY the scale as I try to find somewhere to out you.

God I miss my boutique!

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Macy's One Day Sale! I hate Macy's

2010-09-03T12:50:00.000-04:00

So my first experience with getting treatment at Mt Sinai is like a Macy's One Day Sale (thank you DO for the Macy's analogy).

I have an 1130 appt and I'm there, labs already done, at 1125. At 1235 I said forget this, let's get my Zometa treatment done first since DrJ was behind schedule. I asked if I needed my paperwork to go over to the treatment area and they said, no just give your name.

Of course when I got there three people asked for my piece of paper!!! Then they couldn't find my chart - that's because it was still over at the Dr's area. Rather than wait, I went and got the chart.

Now it's sitting in a file sorter, initially alone, and now pushed behind by 6 other charts.

I hate "Macy's". I miss my boutique!

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How Do You Track Your Bloodwork?

2010-08-29T11:54:00.087-04:00

I'm not sure how many of you are as anal about tracking your bloodwork as I am but I've at least 4 inches of folder containing the various copies of bloodwork and charted results of the numerous tests that I've taken over the past two years. Right from the beginning (as I am almost at my two year anniversary of wondering WTF a protein spike is) I've been tracking my bloodwork in an excel spreadsheet. At first I wasn't sure what all the numbers meant but as I've gone along, I've started to get a base understanding of what each means and how it impacts my condition or what it helps identify.

When my friend came down with acute-AML, I started talking about numbers, results, platelets, RBC, Hemo/Hemato, etc. He looked at me in wonder and asked how I knew all this. I told him that within four weeks he would be speaking a language he had never thought of before. And I was right!

So for those of you wondering what to do with your reams of paper, I am happy to pass along the spreadsheet I am using to help track my data. I originally did this in excel and then migrated to excel for Mac (lovin it!) There is a bit of work required to update the charts but it's usually just cut/paste or extending the time the chart covers. Bottom line, I can help get you setup but you would need to learn a bit of excel to maintain!

Some screen shots with captions below explaining each:

This is a grab of the entry form. I've set this up to mimic the report I get from the hospital so that the data entry is simple. I've got a script written to copy the data so I can easily paste into the actual database.

The main database simply pastes the data coming from the entry form into the next row. The hi/low ranges are maintained and the value changes red for hi and blue for low. This database is the source for the charts and is an easy record for each value in the event you want to look back historically.

I have a few "base" charts that maintain two representative values, show me hi/low ranges and simply chart how I'm doing. These need to be updated with each entry to include the new date but other than that, it's simple to maintain.

My main chart calls out to the database to get values on two different data points and then charts them for the time frame, shows percentage change for each value and represents the hi/low range within the chart.

If anyone would like a copy of the file, please post a comment with your email address and I'll get back to you as quickly as possible. I would need one or two sets of results to setup the database for your needs. Alternatively, I can just send you a blank spreadsheet and you can run with it on your own. Just let me know. When I first started all this I was amazed how little there was available to me. The IMF website has a program (that's not compatible w/ Mac) but their hi/low ranges were always different and the charting ability was limited. I don't want to dismiss what they've built but I found it easier to create my own.

As I've just had to update this for my move from StV's to MtS, I thought it would be a good time to put this out there for anyone interested.

I'm happy to help where I can. Best of luck to all and if anyone has their own example of this, please let me know!

Cheers....

Ode to St Vincent's

2010-08-28T09:27:00.000-04:00

I've spoken to a few people re; the closing of St Vincent's CCC for MM patients and the migration to MtS. Where everyone is aware that MtS is the better hospital and will be much better, long term, for research, treatment, etc., everyone misses StV's. As an entry to this miserable disease, and having seen a few other institutions in advance of going to StV's, this was a wonderful place to go through the treatments, check-ups, and what not. From the moment you arrived, they knew who you were, what you were scheduled to do and where you were supposed to go. And though I've waited there at times, it was never a truly miserable experience. I have even shown up on a Sunday to drop of two liter bottles of 'samples' to a couple of nurses in the treatment area not quite knowing what to do with these.

Now on to Mt Sinai - it's HUGE. The building I'm in covers two square blocks and is affiliated with the other 6 or so blocks of hospitals around it. I've not yet been for bloodwork where I wasn't 11th in line in the queue. To get to the MM section (Ruttenberg clinic) you have to walk through the treatment center (hereafter to be referred to as Grand Central). Now granted, they're new there - so none of the computer stuff is up and running correctly so there's going to be a bit of confusion. But it's still a bit tough to get your arms around when you were used to something so completely different.

My buddy the nurse put it more precisely, "StV's was a boutique...now you're at Macy's." Well my mother should like that! :)

by for now

Back and At It!

2010-08-21T13:42:00.000-04:00

Vacation is definitely over. Now I need a week to recover from my first two weeks back at work. I'm finishing the last week of my 6th maintenance cycle of Rev. All is well and having no issues (aside from the fact that I am too lazy to get up and work out!)

A special thanks to all the reader's down South. It was great to meet so many people that are reading the blog. Now, based on my Son's recent experience down there for golf camp, how much is she paying you to say that!?! In all seriousness, it was great to meet and talk with each of you and thanks, as always for reading.

I have bloodwork being pulled next Tuesday and I believe I'm on target to see Dr J the first week of Sept. I don't expect anything crazy but I will be hoping to get off the Lyrica leaving the only real "drug" being the Rev.

Thanks again to all!

A Long Overdue Update

2010-07-24T08:36:00.000-04:00

It has been weeks since my last post. All is going well. I had two back-to-back visits at Dana Farber and Mt Sinai (formerly St Vincent's) and bloodwork only at DFCI. Bottom line, my numbers are in line and I've been able to back down on some of my meds. I don't want to repeat myself (and haven't previewed my prior post so am not sure if I am repeating myself but here goes), but I've dropped the Nortriptylene altogether as well as some of the other supplements (alpha lipoic, etc.) I've reduced the Rev from 25mg to 15mg.

I can start to feel the Nortrip wearing off now. I've been able to get up and actually do some exercises. Not as much as I'd like but at least I'm doing them. I'm still around 206 and want to get back down to 189 if possible. Additionally, I'm only seeing the doc every three months but still doing bloodwork every month (to get the Rev scrip). Also, I have a very special friend at the hospital which is a huge advantage. One of the NP's from StV's used to be in myeloma and moved to solid tumors. When the change took place she followed Dr J and is back in MM and is helping me out LOADS!

So, as promised, I'm going to try and post some before and after pictures (yes, the hair is all back, it's come back full force, and a bit more curly than I would have wanted. I'll also try to post a few pics w/ a relatively mild Rev reaction.

So this pic is the "day of". In the shower, everything started falling out. Actually, not everything, it really only fell out in two strips off center of the skull. So I had hair around the ears and on the top (mohawk) but nothing in between. It was a really bad Bozo look! After consultation with the wife, I took out the shears and got it down to what you see here.

After a few days, it ALL fell out. This was not caused by any clipper or razor - this was a "Trim By Cytoxan"! I took this with my iPhone for posterity.

When I went back on the Rev (the first maintenance cycle) I had a really bad reaction. This example here is either the second or third cycle. I have the reaction around the 4th or 5th day of the cycle. Notice the red patches on the side of the scalp. If you look closely, you'll see red on the inside of the eye socket, that's the first place it starts. On my first cycle I was triple this with my eyelids and eye socket swollen along with the skin of my scalp, over the ears, also swollen. I looked like a really bad Frankenstein!

I'm now back to full growth and, today, actually had to go to the barber as I could no longer handle the trim with my clippers (without it looking like I had handled the trim with my clippers!)

I head to Mt Sinai on Tuesday to have bloodwork and get my numbers. They're still a bit crazed there with setting things up but at least I'll know where I stand this month. Thanks to everyone reading this and, as always, any questions, please let me know!

What's next?

2010-07-01T23:37:00.000-04:00

Actually, having typed that, I realized it could quickly be misunderstood as a statement of frustration. That is certainly not the case here. By "what's next" I simply mean to provide an update to what seems to be my less frequent postings. As has been lately the case, I offer apologies to those "avid" followers, again, as there hasn't been a recent update to my blog. The days just seem to escape like a poorly monitored, greased swine! (going for visuals tonight!)

Having taken a long weekend in Boston (at a beautiful home with gorgeous views and company that too frequently tip the bottle), I had my visit at DFCI which was promptly followed by a visit at my 'new', New York digs: Mt Sinai (I believe the correct name is the Ruttenberg Cancer Center but I will confirm that in a later post). Bottom line, my numbers remain where they should be. IGA is normal, IGG/IGM are low but approaching normal. WBC, Hemo and Hemato are normal where RBC is just below normal. TotProtein, Globulin and Calcium levels are all good. I had no m-spike so DFCI now considers me to be in near CR (complete remission) as well. Having met w/ Dr Jagannath at Mt Sinai after returning from Boston and DFCI, the following are the changes going forward:

we will drop the Revlimid from 25mg down to 15mg, still 21 days on, 7 days off. I anticipate this being followed through end of this year while dropping to 10mg (21/7) beginning in 2011.
we will drop the Dex altogether (yipee! perhaps this means an end to the c-word?)
we will drop the Nortriptylene as well while keeping with the Lyrica at 200mg/day for the time being. I'm anxious to see where this leaves my feet.
we will drop the Accyclovir as that is really utilized in conjunction with the Velcade and unnecessary in my current state.
there is still a question with respect to the Zometa - DFCI is recommending once per month where MtS is saying not only is that not recommended but something they would avoid. Their belief is that this only raises other potential issues due to the compromises it could pose on the bones itself where I have nothing showing any concerns with my bones or lytic lesions that would demonstrate a need for this active a routine. I've not yet done enough research to say either way so I'll let the two of them chat it out.
I've also opted to drop out of the other daily meds that I don't believe are having an impact: alpha lipoic acid, acetyl l-carnitine, etc.

So my daily regimen is essentially Rev for 21 days along with Lyrica (100mg 2x), BabyAspirin, VitC, VitD, VitB12 (500mcgr - highly recommend this one for an energy boost to anyone taking some of these other meds), FlaxseedOil, sennacol (during Rev days) and finally, FishOil (highly recommended from the pill poppers in Boston!) I now need to get myself to bed at a reasonable time and start getting up and back to my exercises. I was also chastised for not having exercised, which I hope to correct in the very near future. But part of that means getting to bed at a reasonable time (did I just say that twice, probably because it's 23:26 and I should have been in bed hours ago!)

I'll write more re; where I stand and also post some before/after hair pix. I also took some pix of my most recent reaction to the Rev. It wasn't bad but hopefully someone new to the regimen will have a sense of relief that it's not long lasting and Zyrtec will take care of it! Thanks to Beth Morgan for sending me pix of how her eyes reacted to the Rev, I'll try to think of this as I move forward. I'll also put something together re; long term thought process as I've spoken to both docs re; that issue and have some sense of what to expect. But for now, I need to get to bed!

Thanks for reading and I'll talk w/ everyone soon!

To Dex With Love

2010-06-15T00:02:00.001-04:00

It's Monday, it's only 8mg of Dex, it's currently 23:58 AND I'M WIDE AWAKE.

More important, my flaxseed oil wasn't as successful as it was last week and I've even taken to a full 16oz glass of prune juice at dinner (and still no success). But I just realized I haven't even taken my night-time meds and probably need to do that now! But for those of you awake and bored, I've not much to report beyond my lack of sleep. Should be a wonder at work tomorrow. Perhaps I'll get up bright and early and work out (and perhaps I'll win the lottery as well!)

Good night for now!

The Drugs and What to Expect

2010-06-11T19:09:00.000-04:00

One of the recurring themes in my posts is getting caught by surprise when something expected doesn't go the way you expected! Specifically, the drugs you're given and your reactions to them. I created a page on my site called The Drugs and What to Expect that's outlined my experiences. I'm hoping that people just getting into this mess find it useful but I'm also looking for feedback for those that have had other effects. Being I'm using an "off the shelf" blog template I may not be able to do this effectively but at least I can gauge response and determine if I need to do something differently then.

I've not gotten everything in yet but I've tried to capture as much as possible and will continue to fill in when able. Please provide feedback (and in the case of Beth, pictures!) where possible. Hopefully this will prove helpful to others as well. Please also indicate dosages as that may be of relevance (dependent upon age, current bloodwork status, etc.)

I'll leave everyone on a quick tip to combat the C word! Flaxseed Oil, 10o0mg (or is it mcg)! It's been the solution!!! I am also taking "SennaCot" or similar name, which is a mix of Senna and Colace (50mg). Two of those as night and the Flaxseed Oil during the day and aside from two days this week I've been business as usual! :)

On that note....

Dexa-ticipation!

2010-06-11T07:15:00.000-04:00

Last Monday, a week late, I started my next cycle of Rev/Dex. Sunday, knowing that Monday will bring a fairly sleepless night and the onset of consta...nevermind, I got into bed, just before 10, looking forward to a full night's rest. At 1240 I put my book down, finally tired enough to go to sleep. At 1241 my daughter came into our room - I had to bring her back to her room and BAM, I'm wide awake. 0130 I finally was able to get down to sleep.

The bad news? I didn't start the Dex till the NEXT day!

Other than that, I've not had any real issues. As this is the first week of the cycle (25mg of Rev) I got the reaction a bit earlier than normal. On Thursday I had the red head, eyes and ears - and the itch! Today (Friday) is a bit of the same, a bit less red.

I've successfully scheduled an appt at Mt Sinai (Ruttenberg Cancer Center) but it was a bit tough as everyone was just getting started but then I met Gladys and my life is saved! :) At first I was a bit worried but then Gladys came onto the scene and set everything up. I think she realized the mess and wanted to make sure everything was working smoothly (even though most people answering the phone weren't even sure who the doctor was!)

Short one for now - thanks for reading.

Too Busy To Comment

2010-06-03T22:50:00.000-04:00

My last doctor's visit was 28th of May. In general, all is well. I've been so busy I've not had the opportunity to call SVCCC and request copies of my bloodwork but my IGA and Lambda levels are good and I still have no M-spike. The immunofixation still identifies the fact the disease is there but there's nothing else showing it's a problem. After my prior visit (and in one of my previous posts) I had backed down on my Lyrica dosage just due to the fact that I couldn't remember to take my afternoon med (compliments to the boss man for setting up a recurring email that hits me at 1230 each day with my quote, "...as I can't seem to remember to take my afternoon pill.") I'm now officially dropped the Lyrica to 200mg and have also dropped the Nortrip to 10mg. Having done that, I'm noticing a numbness and cold in my feet but thankfully no pain. I'm not noticing any increase in my ability to get up and workout...but I'm still trying! I will update a post with actual numbers but suffice it to say things are good and normal.

The interesting news is the change in hospitals. For those in The City, you've heard that St Vincent's Hospital has gone bankrupt. I may have mentioned this before, but in addition to being the primary hospital for Sept 11 victims, it was St Vincent's that took care of all the Titanic victims as well. A piece of history lost (and a big impact on the neighborhood.) The good news is St Vincent's Cancer Care Center wasn't directly affected by the bankruptcy (they weren't directly attached to the hospital). The bad news is, they were affected and SVCCC will now be under Beth Israel. The further bad news is that BI doesn't have any direct MM related research, doesn't have transplant beds, etc. So I received three letters. 1) Dr's Jagannath and Chari were both moving to Mount Sinai Hospital. 2) Dr Mazumder (who headed up the Sushi protocol) is moving to NYU and 3) Mt Sinai will be taking over care of my 19million frozen stem cells. After a very quick consultation with DFCI, I'm heading to Mt Sinai for future work. Crain's Business News had a quick story on Dr J going to MtS which helped solidify the decision. Additionally, Dr Chari explained that MtS had a growing research group and was looking forward to building a first class MM group with grants coming in, so this is good news. The bad news is the commute is longer, sending me back up to the hold 'hood, the UES (bordering more on Spanish Harlem).

The interesting piece was getting my appointment on 28th May. The letter stated that after 28th May all appointments would take place at MtS. I confirmed my appointment on the Tuesday prior only to get a message on my home phone (after numerous times trying to tell them they needed to call my mobile) saying my appointment needed to be Thursday now. Only problem - I was in San Francisco and wasn't returning till late Thursday (and got the message late Friday eve.) After a few frantic phone calls and emails, I received a call (this time on my mobile) as I was buckling my seat belt on the plane. Confirming I COULD come in on Friday. The visit was fine but you could tell everything was changing. The good news (more good news) was the people I most liked at SVCCC seemed to be coming to MtS. Now I have to confirm all my medical records have been released to MtS and will have to make my next appointment. And since that Friday was everyone's last day, nobody seemed to be present which caused me to not get my Rev script till Wednesday evening, where I was supposed to start on Monday. So I'll be a week delayed in starting that but again, things are good so i can't complain!

Enough for now.

(and glad to see that Mike's back from the hospital and commenting on his blog!)

Up In The Air

2010-05-28T12:32:00.000-04:00

It was a movie available on my flight - didn't watch it (though it's supposed to be great) I stuck w/ Invictus (did you notice my blog name) though the rugby shots weren't great and the documentary, "The 16th Man" was much better; and the Ricky Gervais movie (city of the dead or something like that). I made it safely on my flights: JFK>LAX Sunday; SNA>SEA Monday; SEA>SFO Tuesday; SFO>JFK Thursday. I was able to take my Lovenox injections for the flights to/from JFK. Economy travel still sucks, business class sucks less, but nothing compares to my days on Cathay Pacific! I hate air travel in the US. I wasn't bothered by TSA for having a needle in my bag except on my flight from SEA>SFO. TSA asked if they could look in my bag and then asked, "if I put my hand in your bag is there anything sharp that my cut me"? To which I answered no but I have a hypodermic needle. No, it wasn't that, "those things are so light, we can't even see those in the scanner." Well that made me feel comfy cozy! I got busted for not having pulled out my toiletry kit as it had a small bottles of shave, soap and shampoo. The person traveling with me called me a rookie!

Lovenox, now there's some fun! Remember my prior post in which I stated I didn't know when to take it and there weren't any instructions? It gets better. The CVS paper said something to the effect of, "if you're giving the injection to yourself, your health care provide will instruct you on the proper use." Ok, he said pinch a roll of fat, insert, plunge. To take this further, there's absolutely NO instructions on literally using the needle. It comes with a dark grey cover. Looking at the cover I thought this may be some ingenious way of keeping the sharps safe, you plunge thru the cover and retract the needle into the cover when done. Push hard on the plunger, nothing happens and I realize that's not going to work. Then I realize the cover and the needle fuselage (best word I could come up with) are spring loaded and seem to have some sort of child safety cover. Press in the sides, push down the grey cap, turn clockwise, or was it counter-clockwise, cut the blue wire...wait...i digress. I was able to remove the cover, bend the needle at a 20 degree angle and start spurting lovenox onto the sink. I took the shot, couldn't find the entry point so just slapped on a bandaid. Upon arrival in LA, I notice the bandaid missed the spot by about 1/2 an inch and I had a nice little bruise. Same thing occurred on my trip back home (bent needle, etc) but I was a bit better at finding the spot and almost got it covered by the padding, not the sticky part.

Bottom line, my page of Drugs and Their Effects, will clearly outline steps and techniques. Hopefully I won't have to do this often. I didn't notice much of a difference. All is good, heading to the Doc today for tests and re-up on my Rev scrip. Need to call CVS/Celgene in advance as I'll be pushing this along trying to get a Saturday delivery on my Rev.

By for now!

Back Into The World Of Air Travel In The USofA!

2010-05-22T23:37:00.001-04:00

When I lived in Hong Kong I did quite a bit of traveling for work. I arrived in late October of 1999 and by January of 2000 I had already reached the second highest level of Cathay's membership. Travel in Asia, albeit still stuck in a tin can for 4-8 hours depending upon where you're going, was spoiling. Truly spoiling. For that reason, I do not really travel for work any longer. I'm sorry, but travel, in any class, on a US airline in the USA, pales in comparison to travel in economy on DragonAir! Throw in Cathay or Singapore Air and it's like having a pint of Guinness in a small pub in Ireland for your entire life and then being given a Coors Light (sorry sir, that's all we have and that will be $5 please.)

So tomorrow I head off for 5 days: LA, Seattle, SanFran and back, departing Sunday, returning Thursday. This wouldn't be of concern but of course I have other issues now - and one of the concerns with Revlimid is clotting. Now I take a baby aspirin every day to assist with this. And that was the first recommendation of the doctor. But since I've got a flight cross country, to be cautious, he's recommended I use Lovenox 40 prior to my long flights. Now this is a drug that is self-injected - that's correct, you inject yourself, with a needle, right at home (or hotel, or airport bathroom - I feel so....Trainspotting!) He asked if I had ever self injected before, to which I responded emphatically, "no -- I've given them to my cat, but not myself." Grab that fatty spot around your belly into a nice pinch, simply stick it in and plunge. Tomorrow I get to give that a whirl. I'm soooo looking forward to that! I've also been instructed to walk around every hour or so on the flight. What's interesting, is when I got the script, there were no instructions. And of course, they take the script when filling it, so even his notes (which, in typical fashion, are barely legible) were gone.

When do I take the drug? Just before, a few hours before? I pose the question, asked almost every day (but usually due to a need for some senseless drivel), "what would we do without the internet?"
I would discuss (and probably recommend) a pre-flight heparin shot (such as Fragmin® 2,500 U or Lovenox®40 mg 1-4 hours before the flight) with these patients. However, often these patients are on long-term anticoagulants anyway. I would then not add additional heparin (see "A").
Now there were other sites that actually mentioned the fact that you were given a pre-loaded syringe with really no instructions whatsoever. No detail as to how to inject, where to inject, when to inject, etc. So I will include this in my page on 'drugs and their effects" when I get around to actually updating that page!

So, for now, don't expect anything till next weekend unless I get some gob smacker of a story while traveling. The next fun bit will be next Friday. I go back to the doctors on Friday and need my clearance check for the next dosage of Rev. The trick is to get that 'go-ahead' and get my order processed in time to get the drugs on Saturday in time to start on Monday. All of this shouldn't be an issue - except the fact that Friday, 28 May, is the last day my doctors will actually be at St Vincents. For those in the city, you're quite aware of the issues that St Vincent's, the hospital, has been facing. In addition to being the primary location where the injured were taken during Sept 11th, I recently found out that St Vincent's was the hospital where all the injured from The Titanic were also taken. Talk about a loss of history! Well SVCCC, not directly affiliated with SVH, was bought out by Beth Israel Hospital (approximately 3 blocks from my house). So I was thinking it can only get better - but apparently BI has no interest in MM as two of the doctors are moving to Mt Sinai (where I'll be going) and one of them is going to NYU. I'm not sure if that leaves anyone associated with MM. I'm covered but it's a shame as SVCCC was a great place - my hat's off to everyone working there! The good news is I received a letter today notifying me that my stem cells (currently in a really cold refrigerator) will be moved to Mt Sinai as well - so I'm good in that respect.

Till next week - happy flying!

Friends Are Friends

2010-05-18T01:57:00.000-04:00

First - I did get up on Monday and did a fairly weak set of pushups and situps. But the point here is I DID get up! I guarantee you I will NOT be getting up to do the same tomorrow (or is it today).

Years ago, I played rugby in Hong Kong. I met the then captain of my team in a bar, in MidLevels with my Gran. Yes, with my Gran - who was working her one Diet Coke for the evening while I was drinking pints of Guinness due to the fact that a guy I didn't know was leaving back to India tomorrow. However, Richie, made me an offer (at 130am, while continuing w/ my Guinness while my Gran STILL had her one diet coke - a lesson learned there) to play rugby for Select the next morning at 1130. I showed up (hungover) and was the only, of a group of about 10 second rows, that played that match. And we beat Sequins (our inner-club rivalry) for the first time in 12 matches. There's a story in that but that's for another day.

Bottom line, in that one game, even after irrevocably pissing off the other second rowers that had played w/ the team for years, I was welcomed, quite warmly, into the Select crew. If you have played rugby, you know what this means. If you haven't, ring me up and we'll discuss, better, meet at a Pub here in the city and we'll discuss in-depth. I met my wife through the rugby team in NY and in HK I immediately had a group fo 60 friends/family. The guys I met that day, to this day, even though I've not seen some of them in years, will remain some of the best friends I've met in my life. Sweetie (Pete Record) who conveniently carried his beer wrapped around his wrist and balanced against his chest, which led to the inevitalble stain over the right breast on every jersey he owned. Clive Walton, Esq (who wasn't actually a lawyer, rather, he worked for DHL, but he DID carry himself like an esquire) who could combine any group of people for a night out, including those people who unfortunately were stuck in the Curry House (Shaffi's in Causeway Bay) where 25 of us showed up one Saturday Night. Clive "introduced" us to every single patron in the restaurant by inviting the entire club to have a beer w/ the patron. Clive was also known for the ability to consume his own perishables, much to the chagrin of a bunch of Kiwi girls who were 'offended' by his action in the south stands of the HK Rugby Sevens many years ago. But hell, it was a long way to the pisser....

Include Tom, Dan, Ed (who put his tooth thru the headgear of Jake), Jake (who received the tooth, and then proceeded to play three more matches with breaks while he replaced the butterfly bandage to help stem the bleeding), Stevie (who was Scottish, hooker, can couldnt' be understood from any side of the pitch). Then there was Charlie, who joined the same day I did, who ALWAY was out on the piss Friday night and ended up vomiting on the sidelines 5 minutes into the game, but then proceeded to just blow away the competition (having relieved the internal pressures!)

All of these mates were sorely loss in the bombing in Bali in 2002. I, luckily, was in Barbados for my Brother's wedding. Having said that, when I heard what had happened, I was devastated. The same person that had called me on Sept 11, 2001 had called me after the bombing to tell me of the loss of so many of my mates. All of these guys had taken me in (a Yank - how can a Yank know how to play rugby!) It was a group of gentleman that, for me, has never been matched. Two weeks prior to Bali we had lost miserably to a local team in HK (yes, Pat, it was Valley Mustangs). After Bali, having lost a core component of our team, we met the same team and came back to win, devastatingly! That day, we pulled it together for the boys up in the Sky Bar - to show them The MIghty Select would not be beaten! And we ended up winning the Grand Finals that year - playing the same team that we had beaten my very first match with Select. For me, it was my crowning glory!

Over the time, the wounds have healed - what was drastically taken from us in that mess that was Bali, has scabbed over and, though still hurt, live goes on - as the boys would want. But what brings me to this point is the friends that still exist, over thousands of miles and dollars of phone calls. Luckily brought together (at least for some of them) through FaceBook. As an ExPat, keeping in touch with other ExPat friends is always tough due to changing emails, etc. I joined FBook solely for the purpose of staying in touch w/ these mates. And that's paid off in the nines. Tonight, as usual, my friend Deansey showed up, texting me at 1030am, "I'm in from Dubai, you around in the next 24 hours?" It reminded me of the need to keep in touch w/ these close friends. He joined me, with my parents, brother, sister-in-law, etc., and we chatted till 0100 but though I see him, at best, once a year, he is someone that I wouldn't miss no matter when he called. He was the one that got the team back together on a Forced Night Out (no excuses, everyone's going out) after Bali happened. Beyond Deansey there's Scarthy that calls once a month or so, "...out, just checking in, how are you doing mate?" as well as AliMac, via FBook, moving between India and HK just checking in to see what's happening.

The last time we all met (was really the HK 7's in 2003, the year of SARS when we all referred to it as Single Again and Running Stupid) was in Cambridge when Polly Miller, who was one of the survivors in Bali, had coordinated a rugby tourney in Cambridge to support Dan's Fund For Burns. That weekend was a sevens tourney in the AM, followed by a 15's match sporting Matt Dawson as well as Justin Leonard (for those Eng-el-land fans), then followed by a black-tie dinner at St John's. That was then followed by an equally entertaining night out at an after-hours place in Cambridge. Bottom line, sitting with a mate and regurgitating these stories, much to the chagrin of my wife, reminded me what it means to have friends.

Now I've lived in a large number of places and can safely say I have a number of friends in many locations (whether they'd admit to that or not is yet to be said) but the point of this story (aside from the fact that today is Monday and I had my steroid dosage today and a vast number of beers) is that you can't ever forget that group. No matter how long since you've last spoken/seen these people, if they were friends, they were FRIENDS. So to those boys in HK, Eng, Singapore, India, Thailand, Washington DC, Florida, wherever - hello and when can we next get a beer? And for those of you yet to be friends (people that are going through this same disease as me) when are we next getting together to have a beer (or perhaps a soda or water as I probably should be doing)? And, before I get in trouble, for those that aren't boys but are the significant others (Arianne!) of some of the boys I played with, let's also get together for a beverage or two. Friends are friends and life is too short not to remember to reach out and relive - the past is always best when celebrated with others - especially if some of those others can't be there to enjoy it.

Cheers and good night (posting w/o proofing so deal w/ the mistakes!)

Business as usual

2010-05-16T12:39:00.001-04:00

With nothing to report I find it difficult to find topics or stories to post on my blog. I feel like I'm getting back to normal. I also find (or at least I believe) that the nortiptylene is also affecting my general capacities (in other words I'm a perfect target for those old blonde jokes).

I still have issues with my feet and hands but by no means is it like it was previously. I'm wearing my regular shoes and just dealing with a dull soreness and numbing at the end of the day and first thing in the morning. I'm not sure when the docs will let me get off the drugs as I feel like I'm getting to normal. I'd like to try without and am hoping I can do this come June.

But all this is really just business as usual. This week my friend fighting AML came down with a 103f temp or over 2 days. They couldn't find the cause and were going through a series of antibiotics until finally one worked. Apparently he had a strep infection of some sort. Bottom line, it was one of the toughest things he's been through in his life. It's also been a time that he's had to face mortality.

Now everyone knows my blog never really approaches the issue of mortality. Is it because I'm scared? Because I've never had to face that issue? Perhaps. But in my eyes, I could spend time worrying about that or spend time in what I believe to be a more productive fashion. I dont believe it's that I want to face this issue, as I believe I will have to at some point. At that time, I'll deal with it. Till then, I'm only looking forward. And if I can get off the drugs, perhaps I can do so in a more organized fashion than I've been doing lately - and be a bit less blonde-like!

For now, my goal is to get up tomorrow morning, do my pushups, situps and pullups. I want to be able to get a 20 min workout in each morning. From there I want to get out running 2x per week. What finally got me in this mood? First, i'm starting to feel more normal. Second, I'm starting to look fat! ;) But last, and most important, I see what happened to my friend and realize that I can help prevent getting into that position if I get myself into better shape.

So tomorrow it begins.

Wish me luck.

- Posted using BlogPress from my iPhone

Round 3

2010-05-04T00:10:00.001-04:00

Please do notice the time of this post. But to truly set the picture, we should discuss the prior week and the 'restful' weekend we had. Last week was just plain busy. It was my week off the drugs so my systems were starting to get back to normal but of course, the weekend took its toll! My son had his purple-belt test in TaeKwonDo on Friday so I left work early to see that. Afterwards we took him out to dinner and then headed home at a reasonable time. But of course, by bath, etc., my little one wasn't down till 830 and the older one stayed up to watch an episode of Ben10 and some other Anime style teen show (at the ripe age of 6). My wife went out with the girls and I went to bed early. But my youngest decided her big-girl bed just wouldn't work for her and she needed our bed. Hats off to my wife who, having come in a bit late, actually just got up, and slept with her in her bed. I was allowed to sleep in on Sat but I still felt like I'd been hit by a truck. We had a full day on Sat (soccer, swimming, etc.) and the wife and I decided to stay home and watch a movie. Needless to say, she fell asleep about an hour into the movie, tried to get a second wind, and it just didn't work. Sunday was a full day of church, burning some energy off the kids at the playground afterwards and then prepping for an hour drive out to Long Island for a nieces' first communion party. We got home around 7ish, had dinner and then washed the kids and put them to bed. Again, the little one not till 830 and the elder shortly thereafter. But it was hot - damned hot! We put on the aircon in their room and ours but refused, on 2 May, to put it on elsewhere. The youngest got up around 4 to go to the potty (again, hats off to the wife) and the eldest got up around 5 to say it was too hot in his room (w/ the aircon) and he wanted to sleep on the couch. He was put back to bed (again, hats of to the spouse) and back to sleep (or so we thought). Needless to say, it was so hot, we just tossed and turned the entire night. And this, was our restful weekend. NB - when I got out of the shower around 630 that morning, my son was sitting on the built-in looking out the window and playing w/ his legos. He said he'd come out to watch the thunderstorm and had been up since 6:05 (he's telling time now!)

So today is Monday, my first day of round 3. As noted previously, I've backed down my steroids to only 8mg. When I started this mess I was on 40mg, now I'm only 8mg (I should be able to handle this, big strapping lad that I am, righ?) Well, now it's Monday at 23:46 and I've been trying to setup my blog to be able to print to a PDF file that I can print and send to my MIL who doesn't own a computer. It was midway through downloading the equivalent of 127 pages (boy I talk a lot) that I had these musings and decided to post. 8mg and I'm wide awake, wired for sound, completely refreshed and DREADING GETTING UP TOMORROW!

But enough of that...some key points to note on this cycle.
1) going into this cycle I was prepared. Having come out of a weekend wherein I truly believe I lost 5 pounds just in the bathroom, I was prepared to go after this cycle full speed. I took my Metamucil in the morning, had a spinach salad for lunch (w/ beets, asparagus, peas, etc.), and my wife cooked a healthy meal of porkshops w/ fig/rains sauce, broccoli and rice pilaf. I'm feeling like a champ
2) the Doc offered me a scrip of Senna and I think the quote takes it, "Sennas act as purgatives and are similar to aloe and rhubarb in having as active ingredients anthraquinone derivatives and theirglucosides. The latter are called sennosides or senna glycosides. Senna alexandrina is used in modern medicine as a laxative;^[10] acting on the lower bowel, it is especially useful in alleviating constipation. It increases the peristaltic movements of thecolon by irritating the colonic mucosa." Irritating the colonic mucosa - it doesn't get much better than that. He also offered me a scrip of Colace commonly known as a stool softener. The pharmacist at CVS was kind enough to point out to me that the box of Senna that I picked up already had Colace and I only needed that one box to get everything I needed from the Docs scrip (please note - these are over the counter drugs, located next to the Gas-X, and all those other, aptly named, embarrasing to purchase bowel related medications.) But the better part of this is - if I hadn't asked her and bought both, I would have been taking double the amount of stool softener. That could have been disastrous!
3) As today is my first dosage of Rev/Dex, I've been paying attention to see what, if anything, may happen (due to the decrease in Dex.) I have noticed, upon eating my fruit this morning and having an orange later this evening, that I am having a Niacin like reaction - a quick flush and tingling to the skin, specifically to the head (for me.) Not sure if that's related but will keep on watching.
4) hair is coming back. I bought another trimmer and tried to just trim my hair (having the setting on 1) and took off more than I expected. But I have a nice dose of peach fuzz and will continue to let it grow somewhat. It's really quite nice as I have been able to buy a couple of small Trilby's (had to look that up, under Fedora) at street fairs here in the city and everyone seems to comment (or is just being nice as they know I have cancer!) Whatever the case may be, I like the hats (as do the kids.) So perhaps I'll stay short and sport the hat or perhaps I'll grow long and still sport the hat. One way or the other, after being bald it doesn't really matter!

Enough for now. I need to depart for sleep (or the 30 min of reading prior to falling asleep!) Time for a warm glass of milk and to turn the aircon on in our bedroom! I hope everyone had a restful night!

Update (boring title means boring post!)

2010-05-02T09:41:00.000-04:00

As noted in the title, not much to update here. I had my meeting on the 27th and numbers are looking good. Red Cell counts are approaching normal w/ Hemoglobin in the norm. IGG and IGM aren't quite up to normal (still low) but IGA and lambda remains normal. I guess the good news is there isn't enough IGA to cause a beta m-spike reading but there are still trace amounts.

In talking to the doctor about status, etc., I told him that I basically dropped down to 200mg of Lyrica (from 300) as I can't seem to remember to take my afternoon pill. I've not noticed any side effects from this. My feet still have issues but not anywhere near what they had prior. Still a numbness, specifically from walking alot. I've yet to get the motivation to actually go out an run but one weekend, in the near future, I will go and do that and see what happens. I was given a few more prescriptions (not really scrips but things to buy at the pharmacy to assist with the issues metamucil don't seem to resolve.) We've opted to cut back on the steroids to 8mg/wk. I'll see how I fare w/ that dosage in conjunction w/ the Rev.

For now, not much else to report but I wanted to keep everyone in the loop. It was 80 and muggy yesterday...that's not spring weather! Have a great week everyone.

1 outta 10

2010-04-21T21:46:00.000-04:00

So I've been unbelievably busy at work and at home. The time in VT was great but since my return it seems there hasn't been enough time in the day to get anything done. I'm in my third week of this cycle and return to SVCCC on 27 April for my checkup. But I haven't really updated things from my last visit. Some of this will be stream of consciousness so apologies in advance but its been weeks since I got this info and I just haven't had the opportunity to put "pencil to paper."
My numbers are in line, IGG and IGM are coming back in towards normal (from low) and IGA (the primary culprit) remains normal. RBC/Hemo/Hemato are all below normal but closely approaching normal so in a good position. All other indicators are in place and good. My night at the hospital (after day one of the harvest) had a variety of tests performed, all but one of which came back negative. The "sputem" test (such a refined word) turned up the H-Flu virus (if I'm remembering this correctly) which is closely related to a bad cold. Bottom line, the doctor decided it would be best to get a variety of shots to help fight off future infections. These shots were part of my one big day of many tests.
Now if you remember from my Ohhh Loopy....I'm home post, I had a mini-lyposuction done to test for existence of the disease within the fat cells of my body on that day. They ran this test due to the late peripheral neuropathy that I was experiencing. There is a 1 in 10 chance that a MM Patient may have this issue (and I'm sorry, but I'm not sure if that's related to my form of MM, IGA Lambda, or MM in general.) Guess what, I'm 1 in 10! Now I'm not sure if I fully understand what this means but I've been told not to be concerned and I'll do my best to explain why here. Unfortunately, the report, which has two pictures (labeled "Congo Red" and "Polarized Microscopy") has only one line of diagnosis, "adequate fatty fragments focally suggestive of amyloid deposits (focal congo red positive under polarized microscopy)." But here's my interpretation and it's relation to the bizarre, delayed p/n I've been experiencing.
There are two types of Vitamin C you can buy: regular and time released. The regular VitC is water soluble: your body uses what is needed and flushes the rest out. The time released VitC is fat soluble so it stays in your body for a longer length of time as it's dissolved within the fat cells so takes longer to digest (for lack of a better word.) Where MM is a bone/blood disorder and you expect to see the proteins running rampant within the bloodstream, in my case, the proteins are also present within my fat cells. So where I may finally get to a point where my blood tests are showing me in a complete CR, the potential exists that the proteins could still be present in my fat cells. So the Docs are all saying, we want to keep business as usual to make sure we eradicate all presence of the rogue proteins before we consider me in full CR.
Keeping this same line of thought, if the Velcade got into these same systems, it may be taking longer than normal to get out, thus the delayed effect of the p/n that I've been experiencing. My feet have been better, but I'm still limited in what shoes I can wear and for what length of time I can be on my feet. Now my feet are more numb than anything else. Also, based upon the few acupuncture sessions I had, I can see a definitive link between my feet and my hands - when my feet are hurt/numb, my hands are are hot/numb. If you remember, at the end of each chemo cycle, approximately 3 days after the last Velcade shot, my hands would get abnormally hot. I think this was my first sign.
For now, I'm on 20mg of Nortriptylene and supposed to be on 300mg of Lyrica per day. As I can never remember to take my mid-day pills, I'm only taking 200mg of Lyrica but keeping up with the Nortrip. Unfortunately, I still can't seem to get myself out of bed and doing my exercises which is driving me nuts! But I am getting closer. My goal is to get back into that swing within the next three weeks. My hair is starting to come back but still not everywhere. I believe I'll have to trim one or two more times before I finally let it just grow but I can see it coming. Of course, now my wife is saying she likes me bald (I still hate it!)
So bottom line, the Amyloid Deposit, as I've been told, is not something to be worried about, but I am glad that I'm aware (one more thing to check and confirm). I'm hoping to get more detail on what this means when I'm back on the 27th. Until then, I've got about a dozen other things I need to get done.
One last thing, which I hope to update further in the near future, I've added a page (linked at the top of my main page) which is the drugs and their effects. I've tried to start covering each of the drugs I've been taking, their purpose and the effects I've seen. Each of them have a slew of potential side effects and warnings, which for me, never seem to be applicable (except for hair loss!) So I wanted to put down in writing what was happening to me and hopefully that will help someone else out down the road.

Bye for now.

Let Loose The Seuss!

2010-04-17T11:03:00.000-04:00

More than a week has gone by and not a word on my blog,

The readers down in blog-ville were running agog.

“What could have happened to that glorious author,

was he stuck without tools, a phone, a catheter?”

Well it seems, grateful readers, that the time that doth past

was spent on quite an adventuresome repast.

Add to that a somewhat substantial workflow

It’s difficult to say where all the time go!

Vaction in Vermont, for six lovely days

It was stress-free but action packed in ways.

Daytime saw poodles and bunnies and swingsets

Hidden treasures, woods and lots of cool insects

Ice cream, teddy bears and other fun toy-sects

Mario, Luigi and “Wii would like to play”-sets.

Where evenings were more focused on the adult time

Nice vino, good dinner and…well a whole lot more wine

We talked, shared stories, forgot the daily grind

We even saw an ‘80s band that knew Simple Minds!

But then later, we would break into my favorite libation

A bubbly amber substance from some foreign nation

And at times like these as everyone knows it

You break out the Wii for a few laughs and how goes its

Alas, all this ends when you must finally return

To face that dreaded ogre that is work and your churn.

The 5 hour drive does not help in the little

Knowing soon you’ll be attached to a desk by the middle.

But you Bloggers must be wondering, “why he doth rhyme

Like some two-bit hawker seeking a dime.”

Well it seems that the only way my daughter would sleep

Is to tell her a rhyming story to help earn my keep.

And in that store, what was found, soon to be my noose?

Just a book, aptly named, “A Hatful of Seuss”

So Sneetches, and Ooblocks and Zax’ do beware

My rhyming, my timing, and whining is clear.

Finally a post, though no update is new

At least it’s different than Horton Hears A Who!

But the blog watchers in Blogville would soon look askance

If I didn’t say something regarding my stance.

Numbers stay good, my feet still circumstance

I don’t believe I’ll soon be attending the dance

But Hellboy remained absent (at least at first glance)

And thanks to “UPS Bill” for keeping meds in presence

That’s it for now, my tongue be doth tied

Arrivederci, Sayonnara, Adios and good byed!

Only in Vermont!

2010-04-04T10:47:00.000-04:00

While at the Ben & Jerry's factory, during the tour, my phone rings (and of course I have the "DIVE, DIVE - NUCLEAR DISASTER" sound for my ringtone.) I turn off the ringer and don't answer the phone. After the tour, I listen to the voicemail and it's Bill from UPS saying he tried to deliver and noone was home but was going to give it another try if we could coordinate being there. I called back and Bill told me he lives up near where we're staying and said he could drop it off on his way home. My friends coordinated with their neighbors to accept the package (it took three calls to find a neighbor home on a Sat afternoon in VT that was 78 degrees and sunny!)

Bottom line, thanks to UPS Bill, I got my package and all is right in the world. My only question, would this have happened in the City? Happy Easter all.

The wonders of a 21 day cycle!

2010-04-03T11:23:00.000-04:00

We are visiting friends for Easter Weekend so apols to all that are anxiously awaiting my next update. I will give all the details later when I have some time but for now, suffice it to say, I'm taking it easy and enjoying the GORGEOUS VT weather!

Well actually right now I'm enjoying the weather on hold with CVS trying to figure out where in the hell my next scrip of Revlimid is. The problem with a 21 day cycle and Rev is the Rev is a controlled scrip and there is no auto renewal. If you can't get an appt till Wed that means they have to call in the scrip that day and then it's overnight delivery on thurs for arrival on Friday. We're on vacation so needed to get that delivery to VT. I got a call late Thursday telling me they didn't get the scrip from svccc in time so it will now be delivered on Sat. Again, this is a controlled substance so someone has to sign for it. But it's guaranteed delivery by 1030.

But its also Sat in VT, Easter weekend. And as I said I'm enjoying the great weather, on the back deck, on hold with CVS in Lenexa, KS for 19 min and 08 seconds now. Can I blame my sunburn on them? I wonder what the guarantee guarantees? Oh well, we'll head to the Ben & Jerrys factory and deal with the Revlimid later!

- Posted using BlogPress from my iPhone

To Clip or Not To Clip

2010-03-28T10:48:00.000-04:00

I was given a time frame to expect the Cytoxan to have it's effects. Unfortunately, nobody thought to alert me to the fact that other side effects may take longer to rear their ugly head. I know, you've all heard this complaint before but utilizing my poetic license I'm setting the mood for the primary plot of today's story. So, after I lost my hair, I asked the doctor how long this would last. The response, "well if you had done the transplant, it could take as long as three months for the hair to grow back." So I only had the harvest, and therefore the level of effect should not be as much as a transplant. Appropriately, I've set my internal clock at sub-three months for my hair to be back to normal.

This begs the question as to when to just let it grow. I've grown hair in the only place that I can currently do so - my chin (with a little soul patch under the lip as well). So aside from the fact that I look like I should be a bouncer at a biker bar, it's led to much confusion. People actually think I shaved my head on purpose (lost a bet, coming out with my more "edgier" self, etc.) You then tell them you have cancer and we're back to that awkward moment discussion. Nevertheless, my wife misses my hair. Hell, I miss my hair (no matter how many people tell me, "you have the head for it.") So for about two weeks I've been letting it grow in. If you picture a ChiaPet that's been lovingly cared for by a 3 year old (picture more water going on the table than the ChiaPet) and you've got a good idea of how my hair has grown in. It's a really bad crop of corn there on my head. individual hairs getting as long as 4-5cm but spaced out approximately 4-5cm from each other.

So the question comes up, To Clip, Or Not To Clip. I'd rather the awkward moment, explaining I didn't do this by choice, that I have cancer, and that I'm OK but thank you for asking. The alternative is someone figuring out I have cancer by the sickly appearance of my cranium and then being afraid to ask as they're not sure how I'm going to react. So I posed the question to a few friends and we all came up with, "CLIP IT!" Of course my wife is still in the "half-full" court, saying, "it's starting to grow back." I apologized profusely, waited for her to go off to church and then speedily broke out the clippers and cleaned up my skull. So I'm back to biker bouncer and will explain to my wife that it was done in a complete fit of vanity (and that I have Cancer so I can do whatever I want! :)

Sorry - it's my blog so I can say what I want!

2010-03-25T21:26:00.000-04:00

BP, Sunoco, Exxon (Esso for those old enough), Shell - this isn't a diatribe about the oil companies - this is a serious issue that I am dealing with at this time.

Years ago, I caddied growing up. I will say, my experience at Westwood CC was similar in nature to what everyone has seen (and quoted numerous times) at Bushwood CC (aka Caddyshack). We had gambling in the clubhouse with penny caddy golf, we had Mrs Gotshalk who came dressed in her night shirt, had a humped back and sneered at you when you ordered that glass bottle of Coke and a Payday bar. There were HOURS of time watching really bad Sunday TV as you didn't get to the club until 730 that day so were at the bottom of the list of caddies getting out that morning. Cable TV wasn't invented yet so all we had was Davy and Goliath or really bad Christian TV (wait - I forgot about Candlepins For Cash.)

And then there were the 'Gofers' (I meant to spell it that way Bill Murray!). On Tuesday's, Ladies Day, you could caddy for an entire foursome, two carts. Get out the three woods and meet them 20 yards in front of the green. You had Mr. Michaelson who's entire life was spent trying to scare a caddy to death so that he could bring him home and mount him on the trophy wall. ANY MOVEMENT, ANY SOUND, was sheer death to the caddy. You had to hold the bag between both legs, holding the woods together while cupping the irons with both hands. The towel couldn't flap in the wind, you best not drop a head cover, and if the irons clanked.... And then you had Mr DeLorean, Uncle or cousin to the inventor of the automobile featured in the Back To The Future movies. He could hit a 300+ yard drive and carried a bag that would put Rodney Dangerfield to shame. Wait, correction, HAD a bag that put RD to shame, I'm the one that had to CARRY it!

And then there was that fateful day - I can't remember his name but believe it may have been Mr. Michaelson as well (a different one.) He was on a cart so I had him and his partner while I was running along the side. At one point he was so upset he told me to hit the shot. I told him we weren't allowed to hit the shot. He got angry, but I really was in the right on this one. So he asked me what club to hit. He was in the bunker, which made my decision rather simple, but I still nervously replied, "uh...I would use your sand wedge sir." To which he grunted approval and I ran back to get his club. Luckily his shot did get out of the sand and we continued on. I must have done something right as he was kind enough to reach into his golf bag and pull out a plastic baggie with apple slices (that had been there for all 13 holes today) and offered me one. Since we had just turned the nine I had told him I still had half a Payday bar and was fine.

It was at this point that I noticed something kind of funny. It kind of smelled, there, near him, when giving him his putter. And then I noticed it, as he approached his putt and leaned over to pick up his marker - a visible stain - on his pants - I was like 14 years old - I was at a loss!

OH MY GOD! HE SHIT HIS PANTS!

He putted out and walked off with his friends realizing the cart was on the other side of the green. He told me to bring the cart around. I went to get the cart, started to get in when I noticed the seat.

OH MY GOD! HE LEFT A MARK! AND I HAVE TO DRIVE THE CART!

To this day, I'll never forget that moment, nor the many others like that, where my elderly golfer friends (who were immediately responsible for my ability to get a new comic book or cool Star Trek thingy) flatulated without knowing. Walking along, leaving their invisible trail in the air; that unmistakeable sound (to any 7th grader) while going along as if nothing happened. I swore to myself that I would never let that happen to me. Sure, if home alone and it happens, so what - but in public, outside, at the office - never.

OH MY GOD! I HATE THESE STEROIDS - I'VE BECOME MR. MICHAELSON!

That's what BP, Sunoco, Exxon and Shell have in common with me - GAS! I am sick and tired of spending the first 4 days of every week blown up like a balloon with any movement: stretch, reach, hiccup, whatever; eliciting a noise that any 7th grader would immediately recognize. Luckily, the 7th graders I work with have all forgotten the joys of their childhood or there would be much hell to pay. But I know - and I'm embarrassed - but i'll never admit it! :) So perhaps this is a bit TMI, but again, It's my blog and I'll whine if I want to!

So now I know that...and other, more serious, drivel!

2010-03-22T23:03:00.000-04:00

I heard from the neurologist today. The bloodwork I had drawn on 11 March was finally back and I received a fax with the details. Judging by the results (and the report's ever so meaningful representation of what they mean, in harsh black and white), I'm guessing he was checking a variety of things in addition to seeing if I may be diabetic and that is causing the neuropathy. I'm not diabetic. Pretty much everything was normal except for VitD. He's suggested I start taking a VitD supplement.

So now I know this, what's next?

"Wait it out and if things haven't changed in about a month, ring me up again." So I'm guessing acupuncture is my last hope. The Olbas oil isn't doing anything for my feet though it is quite effective for my sinuses and as everyone in the house BUT me has some sort of cold it must be working somewhat. Of course, I don't catch colds now, I only get sinus and bronchial infections, it goes straight to the heavy stuff!

But all of this I have to sort of put in place. Previously, I had discussed the pain measurement, on a scale of 1 to 10. I had my idea of what that was but I don't think I've really (recently) been at a level 10 or even close. I think the same goes for where I stand personally, as it pertains to the disease. First, my selfish side (it's always first, isn't it?) says, "this is miserable - I have cancer, I'm not supposed to get cancer." You can't rule out your selfish side, you can only apply it to something meaningful. Not everyone can be like Lance Armstrong and not only beat the disease but "prove it" to everyone (while raising a global awareness of the problem and basically affecting everyone dressing styles.) But you do have the ability to put the thoughts, anger, selfishness, concern, and even the pain to something productive and meaningful. For me, currently, it's this blog. I'm hoping that I can step up and do more in the very near future (which definitely means fundraisers of some nature with my one promise (ok two) of drinks and a good time, ok, three if you include the inevitable stories that will result). But for now, I need to deal with my issues and deal with my 3 and 6 year olds which, thankfully, occupy the bulk of my time.

This weekend, while unsuccessfully trying to find comfortable shoes that I can wear to work, I happened upon three people coming out of the subway, wearing a bright orange shirt saying "Multiple Myeloma Runner Support Team". I forgot there was a half marathon that day. One of the priests at our church was running in support of one of the school mothers who has MM and who, when going through her transplant, required platelet donations (of which my wife was a donor). That means her numbers were probably not that great, which means just more shyte you have to go through in the overall process. But back to my runner support team, I didn't do this as my feet were killing me, they caught me off guard (I was passing them on the stairs and I almost missed a step in indecision), and they really had no clue who I was or that I was even looking at them. BUT, I wanted to stop them, introduce myself, let them know I had MM and thank them for supporting someone! I wish I had, and I hope next time I do. But I'm guessing that the person they're supporting wasn't in as good a position as I.

In addition to this, I've already told you of my friend, battling AML, who's in a good position but still going through a chemo I have never had to deal with. Lastly, another friend shot me a message this weekend, telling me his niece, 17 years old, was diagnosed with stage2 lymphoma. I'm not going to get into a debate as to when is the best time to find out you have any cancer but I can safely say, in my thoughts, 17 has got to be one of the worst ages, for the patient. It sucks to be the 'mom' at any age (and I know someone that would agree with me there, correct TaiTai?) but to be the kid, in High School, going through chemo, etc and knowing (or learning) that so much of your life that was still dreams, just can't happen is beyond my capacity to perceive.

It brings me back to the pain scale - where am I on that scale of 1-10 - selfish is pushing 4 and humble is putting down a 2 - so I'll split the middle at 3 with the caveat that I still get to play the C-card when necessary. On a serious note, everyone tells me they're impressed with my "up-beatedness" (is that a word) and outlook. I just can't think any other way, and perhaps that's helped me be where I am. If you have friends and loved ones in a position like this, it's your duty to make sure they stay that way - it truly helps.

Thanks for listening, and again I've stayed up way past my bedtime (thanks Mr Dex!)

Same Ol' Same Ol'

2010-03-22T07:27:00.000-04:00

Nothing really to report. Feet still hurt, more of a frostbite kind of pain (tingling then needles). Beyond that, all is well. It was a beautiful weekend and I didn't have any bizarre happenings or something stupid to report. So that's all for now.

Get To The "Point" with Acupuncture

2010-03-17T21:30:00.000-04:00

I know everyone out there is waiting with baited breath on the outcome of my acupuncture visit. Especially my friends in Hong Kong, wondering if I've finally been able to balance my Chi. Well, the outcome - as my mother can already tell you, my wiring is all screwed up!

I had two very impressive (I am being serious here) doctors. One born in Malaysia but from HK parents and the other born and raised in HK. The new doctor was not aware of my infinitely tiny understanding of the Cantonese language until he asked me a question and I (of course) answered, "Moh Men Thai" (no problems/no worries). We then compared notes and he took me to the extent of my language abilities (my old address, "midlevels", beer please). I was then told to relax and stick out my tongue. I apparently have some 'heart' problems (not literally, but spiritual heart issues). Of course I couldn't think of what these were so we moved on. I had needles placed between every finger of my hand and in about 8 other places on my legs. They were trying to connect my chi from the hands down to the pains I have been having in my feet. They were cautious as they didn't want to over-needle me on my first visit. I learned a lot about "spleen5" and "kidney9" (eyes closed, relaxing thinking I'm going to get a needle in the belly only to get one in the ankle!)

Unfortunately I didn't really experience anything. I'm going back next week to try again and we agreed to try approximately five sessions to get something going. I would really like to see this work but I think you do have to have yourself in the correct mental state for it to work. Coming from work and having had three cups of coffee that morning I don't believe I really had myself in the correct mental state. My feet did hurt, so that part was right! Since I don't have pain in any singular spot it's tough for them to diagnose the best direction to a cure. Pain in your heel is treated differently than pain in your toes. The pain I'm experiencing varies in type and strength. My heel and ball of my feet have a dull burning ache. My toes will have a tingling, electrical pain. I will then get a shooting pain on the instep by the heel or a shooting pain starting on the outside of the ankle, above the heel, that runs around the heel and back up the inside. They ask you to rate the pain on a scale of 1-10 (w/ 10 being unbearable). I would say on average it's a 4-5 but last night, at our school function, while standing I could say it was at a 6-7. I don't think I've gotten really beyond a 7 but perhaps my 7 is really a 5. Who knows!

I tried to find some cool maps of the acupuncture meridians and you really have to know what you're looking for to identify something on the map. I do have a better understanding of what the docs were talking about when they were reviewing me in advance. Just google "acupuncture "spleen5"" and go from there. Good fun!

If anyone has had any experiences with Acupuncture, please comment as I would love to hear about it.

Customer Service - the long lost art of retaining a customer!

2010-03-14T16:16:00.000-04:00

My title has no bearing on Myeloma, but to keep in the theme of my blog, I no longer look "red in the face". The reaction to the Revlimid seemed to wear off yesterday evening. I had taken a Zyrtec earlier in the day which has helped and not knocked me out for the day. This morning I no longer see much visible redness (beyond the pinkness of my bald head anyways.) I will note that my feet are now hurting more so and I've noticed it the last two evenings. It's become more difficult to sleep. I actually feel better standing and walking than I do laying down. Having said that, at the grocery today I started getting shooting pains in the instep. Since I saw the neurologist on Wednesday I've not taken the Dilaudid. Tuesday I have acupuncture and I am keeping my fingers crossed that it will have some effect on what is going on currently.

Now on to my rant! Netflix may have finally convinced me to jump the Blockbuster ship. Our Blockbuster store (Stuy Town/1st Ave) has been miserable for years. Miserable service, selection, etc. The ONLY saving grace is you have to walk by two grocery stores and our Korean deli. This means if I convince number one son to go to Blockbuster I can get him to hit the grocery stores on the way home. I think I have reached the end of my rope with that store and will have to resort to simply threatening my son if he doesn't come with me. We went in for one movie, Ben10 Alien Swarm. Now granted, it's a new release so it may be difficult to find. In addition, I wanted to get number one daughter Beauty and The Beast. The kids selection has NO Beauty and the Beast, no Snow White, no Little Mermaid, it's like they've boycotted Disney films. But they did have Apple Dumpling Gang, 6 copies of Alvin and the C's, etc. On to Ben10 - the had one, count them, one copy in the new release section, and it was out. We were able to find a Pokemon movie to suit our needs but at checkout I asked about the possibility of the Ben10 moving being available. Of course, she had no idea what I was talking about. When she finally identified the movie she said it says one was there, when I told her the cover was there but no disc was present she said they probably shipped it to another store. The ONE copy of the NEW RELEASE was sent to another store? This is the epitome of retail customer service at it's worst! BUT WAIT - THERE'S MORE! She then proceeds to tell me, "You are aware that kids movies are no longer 99 cents, right? They're full price now." My only response was, "That doesn't surprise me." I think I'm done with Blockbuster, even if it helps get someone off his bottom and away from the DS for 30 minutes.

Next stop Gristede's. Aside from the fact that you're unable to shop due to the fact that they have parked themselves in front of the shelves loading items so you can't buy anything, this is the closest store for staples (bread, cereal, etc.) Once you've gotten the goods you need, you have the wonder of experiencing, "The Checkout Lady". I truly believe they get paid extra to take items like bread and put it into a bag so that when you return home you have something more resembling Silly Putty than bread. Three times I had to ask her to put the bread items into a separate bag. She was quite upset with me. Again, service at its best! All the while my feet are flaring up at me - luckily, this was the last day of my Dex dosage, otherwise that lady could have been "toast" (like the bread reference?)

Give me a cigar, I look like HellBoy!

2010-03-13T10:47:00.002-05:00

For those that have been to the movies in the recent past, HellBoy is a comic gone cinema creation. He's all red, two stubbed horns on top and all red. And that's exactly what I look like right now! Yesterday I woke up with my eyes swollen, red marks in my eye sockets and red patches across the front of my forehead. Today is a bit better but I am all red, I have a red mark across my shoulders and a red stripe on the base of my spine. Back to the lotrimin comment from an earlier post, I had to put that on today and will again take the Zyrtec to help stem the itchiness, which isn't too bad today. However, last night was miserable. Aside from my 3yr old daughter coming into our room multiple times, my feet and calves were killing me. Burning sensation, cramping in the calves and feet just hurting from the neuropathy. I'm able to deal with it. The redness though is disturbing as it really does make me look evil. Of course the little tuft of WHITE beard I've grown on the stubb of my chin doesn't help. :)

Though I'm writing about how much crap I'm going through, please remember, it's my opportunity to whinge and moan but I'm dealing with it and I'm in a good spot as far as numbers, etc. It could be alot worse. So let me vent and remember to keep the faith and keep the good spirits - remember, St Patty's day is just around the corner! Perhaps Guinness is a good cure for RevRedness!

I had to put in an image!

The Raccoon Is Back

2010-03-12T10:23:00.000-05:00

The Revlimid has started to kick in. I could feel it yesterday when the skin of my scalp, by the top of my ears, started itching. I also saw the raccoon eyes start yesterday(bright red spots on the inside of the eye socket). But this morning - I've not had this before - the insides of my eyes, specifically my eyelids, are swollen and reddish blue. As if I had been in a fight. I always had a reaction to the Revlimid within the first 4 days of taking the drug. See "Son of an Itch" post for the details on my first encounter with this effect. I've taken a Zyrtec and called in sick (but have to find someone to cover a client meeting). The effect of the Rev is much more noticeable now that I have no hair. In addition to the eyes; my ears, and the skin around, is bright red. I have two red patches that flow down on either side of the front of my scalp (around where the hairline should be located.) Last, my big red birthmark, usually only subtly pronounced, is now bright red like a neon sign saying, "eat at Joe's".

The only change that's taken place is the addition of some very difficultly named vitamins that the neurologist recommended I take. I met with the neurologist on Wednesday. He looked me over and checked my legs with a tuning fork (so much for carrying a tune). He told me to take Acetyl L Carnitine and Alpha Lipoic Acid along with Vitamin C. I ran these by the docs in Boston and all was fine as long as I wasn't taking Velcade. Additionally, he told me to stop taking the Dilaudid as the morphine that drug provides to my body, for pain relief, actually prevents my body from making it's own morphine. He specifically mentioned that if I was to have acupuncture (currently scheduled for Tuesday, lunch time) it may not work due to the fact that my body wouldn't be releasing the morphine it would usually release with the acupuncture as it's been dulled by the dilaudid I'm taking into my system. So I stopped taking the Dilaudid as of that day. And boy were my feet killing me yesterday.

The docs also upped the dosage of the nortriptylene. I'm now taking 20mg per day (in the evening) and I actually believe that may be helping. However, it's tough to get up in the morning! I feel good, but wish I could get this issue with the feet resolved, in addition to the reaction to the Rev. Hopefully that will be lessened as time goes on. So now, my daily intake is as follows:

Revlimid - 25mg
Dexamethazone - 20mg (1x per week)
Lyrica - 300mg
Nortriptylene - 20mg
Accyclovir - 400 mg
Acetly L Carnitine - 500mg, 4x per day
Alpha Lipoic Acid - 300mg, 2x per day
Vit C - 1000mg, 2x per day (revised to 500mg/day by DFCI)
Vit b12 - 500mg
Vit b6 - 100mg (upping that to 200mg today)
multi vitamin - 1
baby aspirin - 1

So now for some fun - first, one of my avid readers (who shall remain anonymous) was kind enough to bring to my attention the Wikipedia entry for hiccups (see link). Now the cure fo hiccups I had written down was not mentioned but he did point out the cure outlined in the second paragraph under the heading "Medical Treatment". Specifically, this is what you should do before you actually pursue any medical treatment. Luckily, I was able to cure my hiccups prior to having to resort to these tactics - lucky for my wife, that is! It was interesting to read about the young girl that had hiccups for five weeks continuously.

This same anonymous reader is the one who sees my video chat at work. I have strategically positioned the camera so that all you see is the top of my head. Apparently this person is a bit slow at work as he likes to watch the video of my bald head and has asked if I could potentially put something on the top of my head so that it might better resemble a different part of the anatomy (put your thinking cap on as I'm not describing this in any more detail!). After trying to find different objects on my desk that might suit this purpose I realized I had a chat open with approximately 12 different people and all of them had the ability to see my misbegotten attempts. Unfortunately, I will not be able to fulfill his request and have ceased trying to find a way to do so (and embarrassing myself in the meantime!)

Enough for now!

There is a cure!

2010-03-10T18:13:00.000-05:00

For Hiccups! (sorry, had you going there for a minute, didn't I!)

You'll need two people or a very coordinated mouth. Apparently the Dex is causing hiccups this time versus the acid reflux last time. But these hiccups stay with you for quite awhile. So here's the cure.

You'll need to be drinking water while holding your ears closed (pushing on the nubs over the ear hole so that no air can get in or out). I said no way and was immediately resolved after trying this, in a cab, heading downtown. It worked immediately and the person that taught me swore it has never failed.

So there's my two bits!

My Medicine Cabinet Isn't Big Enough

2010-03-08T22:22:00.000-05:00

Today started my first maintenance cycle - 21 days on, 7 days off. So here's my list of meds at this point:

- Revlimid, 25mg

- Dexamethazone, 20mg (one time per week)

- Lyrica, 125mg 1 in morning, 1 in afternoon, 2 at night (300mg total)

- Nortriptylene, (dosage?) 1 in evening

- Dilaudid, 2mg per tablet, as needed (approximately 6-8mg/day)

- Accyclovir (dosage?) 1 per day (to stop shingles, believe it's needed in conjunction w/ the rev and dex)

over the counter stuff

- one baby aspirin

- one multi vitamin

- one 100mg VitB6

- one 500mg VitB12

Since I didn't start the Rev till tonight, I can't take the next one till tomorrow afternoon, then I can get on a morning schedule (which is easier to remember). The dex I won't take till tomorrow as I wouldn't get any sleep if I took it tonight.

The dilaudid is helping but I've limited the amounts being taken as it becomes tough to function. This leaves me with my feet hurting, just not as much. I see the neurologist on Wednesday. Not sure if I'll get anything out of that visit but I hope something will come up. Till now, I just make sure I have my pill container clearly outlined. Sometime soon I may actually try to get up and workout - a novel undertaking! Till next time...

It's all about the dosage

2010-03-07T20:38:00.000-05:00

I did my best to work out the dosages this weekend. I think I'm best suited to take 2mg in the morning and then save the next 2mg tab till later and slowly work the dosage over the day. It doesn't remove the pain but does curb it to be more bearable while not putting me into space (literally). Today I took 2 tabs (4mg) in the morning and I haven't had anything else since. I spent a bit of time outside with the kids in running shoes and my feet don't feel too bad. I do believe I will make tonight an early one due to the fact that my experiment last night had a bit too good of a result - in fact I was "resulting"' all morning (just hungover, not sick)!

I took three tablets yesterday: morning, afternoon, early evening. I also went to the Russian Bath House yesterday evening. I will tell you, after about an hour and a half in the Russian and Turkish Saunas; and the aromatherapy steam room; and the ice cold pool, my legs and feet felt great. The massage from the rather large lady in the hard to find room left me melting into the massage table. When she hit my feet and calves I thought I was going to cry - but boy I felt great afterwards. From there we headed downtown for dinner and beers. A big rib eye and roasted veg coupled with a number of beers. Guinness, without doubt, but they also had Chimay Cinq on tap - that was a first for me! After about 5 beers (and a 14oz steak) I felt pretty good and didn't feel any reaction with the pain killers. We then hit two other places until I realized it was 2am. I wasn't so much concerned with the alcohol or drug interaction as the two kids that would be up at 0630! I made a hasty exit and headed home. I realized later this afternoon, after a late night flashback, that I had made a peanut butter and jelly sandwich when I got home - it was all very fuzzy. This morning hurt - but the experiment worked - I was able to have a few beers without becoming a blithering idiot! But hangovers are miserable. That's all for now - more later.

Getting to Know Yin and Yang

2010-03-06T17:06:00.000-05:00

Someone was responding to my comment about balancing work and drugs, "if you figure that out, let me know." Well - I've not quite figured that out. Yesterday I took two pills when I woke up but I went straight to a client's office. After being there for a bit my feet were flaring up so I figured I would take one more as the first two weren't really working. Needless to say, by the time I got back to the office I had realized I was truly quite worthless. In a conversation I could hold my own as I was able to focus on one topic. But at my desk, responding to emails, answering questions, and just listening to the general hullaballoo in the office I was a mess. I just couldn't keep my thoughts in one place and kept losing track like I was Gilbert Grape! There was an astonishing brilliance surrounded by a blithering idiot!

I think the perfect analogy was a joke sent by a friend. The CEO of a company was standing in front of the shredder holding a piece of paper. He obviously couldn't figure out how to get the machine to work. Some low life peon in the company structure came along and offered to help. The CEO just said he couldn't figure out that darn machine. The Peon proceeded to feed the paper in the shredder. As the boss was walking away, he looked over his shoulder and said, "I just need two copies, thank you!"

That was me - time to get back on the scooter and work on my balance!

Ohhh Loopy....I'm home

2010-03-03T16:57:00.003-05:00

So my feet have been killing me and today I was at SVCCC to run more bloodwork and have a few tests done. It was an exciting day. I drew 14 tubes of blood - I had to wait as they had to warm up some of the tubes (apparently some tests require warm tubes!) Additionally, I had a mini-Lyposuction done today for one of the tests. This test has a great visual but I forgot to take a picture. There's a needle (of course) and this massive aluminum handle gadget, imagine the extension gripper thingy you see on late night informercials (to get that cup from the top of your kitchen cabinet - they never explained how you were able to place it there initially but hey, it works!). The doc goes to a nice fatty area of your body (which, due to my recent bout of inactivity, I was easily able to provide), sticks in the needle and then pokes around in a variety of directions while using the gripper to slowly suck out the fat cells. "You may feel a bit of pain, if it gets bad let me know as we may be hitting a nerve rather than getting into the fatty tissue." Me: "Ok, I feel that now, yes, it's starting to hurt now, yes, that part is painful". Him: "I'm going to count to 10 and then we'll be done, one............two........" and this goes on for the slowest 10 count I've ever experienced. So what happened to we may be on a nerve? He had to do this twice. It wasn't really that painful and he was done in about 10 minutes. This test is to rule out another related issue (related to Myeloma) that could be potentially causing the neuropathy.

There were a rash of other tests performed today as well, checking B vitamin levels, as well as testing for other potentially harmful bacteria or viruses in my system (hepatitis, etc.) I was also given two injections/vaccinations to help prevent against potential issues. As mentioned previously, due to my low IGG count, I am susceptible to infections (sinus infection, etc.) These vaccinations will help prevent any issues. So let's think about my day thus far: blood drawn (one needle), liposuction (two needles) and vaccination one and two (two needles, into muscle area of either shoulder). I'm having a blast thus far just trying to find all the band aids I need to remove.

I next met w/ the pain management nurse to discuss my feet. We discussed a variety of options and she got me over the scare of opiate based drugs. To start, the expectation is the neuropathy should be over with in about a month and a half. We decided on two things to assist. First, there is the Nortriptyline (see link for details) that is supposed to work with the Lyrica to assist in rebuilding or fixing the nerve endings that are being affected. Take one of these at night time (as it will make you sleepy). Next is the Dilaudid (again, see link) which is an opiate derivative. This, like morphine, is the pain killer. To make sure it worked, she gave me two, very small tablets, 2mg each. We had to wait for 45 minutes to confirm if it was working. At the end of that time, my feet were still shooting their fireworks with really no change (except for a slight fuzzy/tunnel vision feeling around my face). When the 4mg wasn't working, she gave me two more, saying, "well, you are a big guy." After the prescribed period I could definitely start to feel an improvement in the feet. There was a markedly increased amount of fuzzy and tunnel vision as well. It isn't quite like being drunk, but there's definitely a buzz and I'm walking around in a displaced, absent minded manner (please feel free to insert the sarcastic comment I know you are thinking of at this time.) Everyone should be pleased that I did speak w/ the nurses in charge and did get clearance to have beer while on the medications. I was told I may get loopy rather quick but go slowly and gauge myself. I'm all set for that scientific experiment!

I will say, this process started around 11am with the second dose shortly after Noon and my feet still feel free and clear (as of 1740). This isn't the end as I'm still going to see a neurologist next week so they can look at my feet and I'm also scheduling an acupuncture session to see if that helps (SVCCC has an acupuncturist on staff).

For me, this is very good news. I was also cleared to start up the Revlimid maintenance. That will all start in the next week or so. Numbers-wise, my WBC and RBC counts are still a bit low but very close to normal and everything else is looking fine. So potentially I may not have much news in the immediate future - so I'll try to find something funny to talk about!

Cheers...

Multitasking can be dangerous

2010-03-03T12:57:00.001-05:00

Work is too busy - juggling projects, phone calls and people coming up to the desk. My lips got dry and I opened my drawer and reached for the Carmex (lip product, like chapstick for dry, chapped lips) while speaking with someone. I grabbed too much on the tip of my finger but managed to apply appropriately and not look like some eHarmony wannabe with the poutie lips and fake.... (sorry, I'm at svccc and testing out some new pain meds so I take no responsibility for my references and analogies.)

While continuing to talk with my colleague I commented on the fact the Carmex was a bit hot and I hadn't felt that before. Only after I had left that discussion to then carry on another and finally returning to my desk that I discovered I HADNT USED THE CARMEX, I HAD USED THE TIGER BALM!

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A rough night

2010-03-01T08:51:00.001-05:00

On Sat I went to SVCCC for my Zometa. While there I spoke with my Newfie nurse about all the issues I've been having with my feet. Due to the nature and variety of my pains she thought perhaps it might be some other issue (podiatry related). I shot a message to the SVCCC docs and mentioned this along with the fact that my Lyrica prescription would run out Sat night.

DO NOT LET YOUR LYRICA SCRIPT RUN OUT!

I think I understand the nature of lyrica - it gets in and works slow enough (over time) that you don't realize the benefits you're getting till they wear off! The doc called me on Sunday and said he would call CVS to refill my scrip. Unfortunately he left them a vmail and Lyrica is a controlled substance and cannot be given without a written scrip. The pharmacist was nice and gave me enough to last through today.

I went to bed at 2030 last night and woke up at 2200 with my feet shooing fireworks! Serious pain. I finally got back asleep around 0200.

The lesson here is don't underestimate the power of the drugs you're given. They may be working better than you think. I go in to SVCCC on Wed for bloodwork and tests. I may also see a neurologist re the neuropathy to test my feet and see what's going on. For now, I plug away at work!

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Bald spot

2010-02-26T22:45:00.001-05:00

Where everyone else has a bald spot I have a hairy spot. How ironic is that?!?

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Let me describe my feet

2010-02-26T05:22:00.003-05:00

As I sit looking out at the wonder of The City after The Snurricane (snowicane, snowmageddon iii), I thought it the perfect opportunity to describe my feet and the pain I'm experiencing. It has nothing to do with the fact that my feet woke me up at 0503 in the morning and I couldn't get back to sleep - honest - it was a burning desire to lay down on paper (electronic paper, well sort of) the experience and adventure that is my foot pain. Now that I've got everyone pepped up for a good read...!

I don't know if this is immediately resultant of the Cytoxan. Refer back to this post for details on Cytoxan. If you look closely at the card, neuropathy is not one of the side effects listed (and thank god I didn't look closely at the card - losing your nails!?!) Now Velcade, the last dose of which was on 12 Jan, is in fact known for causing neuropathy and if it occurs you actually dial back your dosage to help stem the effect. So the Docs are a bit stuffed at this one, there are other causes (related to Myeloma patients) but I've got none of the symptoms associated with those causes - we're testing for them next week anyways. But back to my feet.

There are a variety of pains I experience. First - the dull ache in the heels. If you wear a bad pair of shoes you may have experienced this but I liken it to jumping off a small ledge, 3-4 feet and landing, bare-foot, on your heels. The resulting bruised heel would ache on a regular basis. I can't say that it's constant but, like I'm in near-complete remission, it's in near-complete awareness. Next, there is the ball of the feet, towards the front of the ball of the feet. this is an ache but mixed with a burning sensation although not hot to the touch. Again, this part is in near-complete awareness. Next, I have a variety of sensory effects that can be described but the description wanes in contrast to the physical experience. Everyone tells me, "you have to go on a cruise - until you've done it you just can't understand." I have no desire to take a cruise, perhaps I'm missing something. I have no desire to experience the sh!t that's going on with my feet but I didn't have a choice in that matter and am not recommending you give it a try! :)

To set the stage, as I said, there are a variety of sensory inputs. Where possible, I'll give you the opportunity to associate. Take a 9v battery and, gently mind you, tap the +/- ends to your tongue. That quick zap, very directional, of pain occurs in my toes. I can't say it's near-complete but it is a regularly occurring effect. Next, when you twinge a muscle and experience that sharp, inner pain that starts in a location and then seems to linger down a path, reducing in its power, that occurs in various parts of my feet. This isn't the constant muscle ache of a pulled muscle, this is picking up the kid in the wrong manner and that sharp, swift, twinge is the pain I'm talking about. I will be in a meeting and will physically jerk as something like that occurs, usually around the front of my heel, leading into the instep. This morning, waking up, the pain across my instep was electrical in nature but more of an irregular, pulsing flow that would approach the threshold of truly hurting but never quite cross, causing a dull but annoying pain. I can only liken, and again, not comlpetely, to having a muscle, taught across the instep, that is stretched too far and then released back to normal and then stretched again. It's not quite that as stretching the instep doesn't help. Then there's the irregular occurrences, one of which was this morning where I would move in a manner that is similar to the achilles heel stretch (find a fitness site to explain if this thought isn't familiar to all you slackers! :) and I would experience a sharp, shooting pain from the top (ankle) of the heel up the ankle into the back of the calf. Lastly, there's the overall burning sensation along with a dryness which feels like my feet are cracking. With the Olbas Oil and Cocoa Butter it hasn't been as dry but last night I didn't put on either of these which may be the reason I was up at 0503.

I think I've highlighted the bulk of what's going on in the feet. Beyond that I've also experienced a "mushiness" in the calves, like I'm really out of shape and just went and played touch football in Central Park - wait, that was 15 years ago when I really was out of shape. See how you can tie back these experiences if you really try!?! I'm not sure if the pains in my calves and the additional pains in my knees have been caused by my walking differently due to the issues in my feet. I don't notice the knee pains at all unless I have been walking alot, and usually in dress shoes. Aside from Monday, I've been wearing my aptly described 'man-clogs' every day. Today, with the Snurricane, I'll need to wear my Doc Martens and will hope for the best (they've not been the best thus far.)

For now, I hope you've enjoyed my little masochistic treatise on feet - now I must shower and prepare for work!

Oh...I didn't recognize you...

2010-02-24T07:29:00.003-05:00

Before - After

Hair - Bald

For most people, work friends, rugby friends (anyone that hasn't seen pix on Fbook) I can understand the look of surprise if you see me outside of normal circumstances. Most work friends see me at my desk and then ask, "did you lose a bet?" To which I respond, jokingly, "sort of, I guess." and then explain. There are some that come up and talk to you till you actually say something about what's going on. And there are those that outright just ask, "is everything all right?" The latter I probably prefer as it's straight and to the point.

But what caught me the most off guard was the people at SVCCC. When dealing with cancer patients all the time, the change from hair to no-hair I would imagine is quite often. So when someone shows up bald the, "you look different" comment catches me off guard - well of course I look different - you gave me drugs that made my hair fall out! :)

This post was written Monday so the novelty has worn off - well at least for those that haven't asked me to launch my video chat for the entire trading desk to see! All is good except for my feet - my feet are still killing me! I've increased the dosage of the Lyrica and it's not doing anything but making me stoned. Apparently, if this doesn't go away in a few days then I'm to get in touch w/ one of the nurses about a trial of one of their opioid pain medications. Let's break down the word opioid - opiate - opium?!? Sounds like fun!

Dilyn's going to take a picture of me with hair which I'll try and post!

bfn

The glare, the glare!

2010-02-23T20:47:00.003-05:00

Today was a day to test the video on my chat. Trading desks everywhere asking me to wave and show off my bald pate! And that fluorescent fixture above my desk offers a wonderful glare on the chrome dome - perfect for entertaining....

Later I went to St Vincent's - and apparently I captured 16.9mm t-cells, about 1mm more than I originally thought! I can't say that's a record but I'm damned impressed with myself. I also found out that the various tests they ran (for bacterium) when I was sick all came back negative except the Sputum - the medical term for loogie! Apparently I had the H-flu bacterium. There is a big name I don't remember and no, it is not related to H1N1, it's essentially the same bacteria that causes a cold. My numbers were good - WBC still a bit low but should be coming up, RBC and similar all the same. Nothing of significance there.

I'll go back next week for another round of bloodwork to determine if I can go on the Rev/Dex regimen. I expect that will start in about two weeks. In addition to that, due to the neuropathy I've been experiencing, and due to the fact that I've had three incidences, in the last six months, where I've required anti biotics, we'll do a few more things while I'm there. I'm scheduled to get a few injections. Currently, I have IGA myeloma. Since the IGA protein has taken over my body, it depleted my abilities to create the IGG protein (antibody) which helps your body protect against infections like the sinus infection and the cough I more recently experienced. Rather than do an IGG transfusion (as my IGG numbers are coming up), and to protect against further issues, these shots will help protect me like a flu virus. In addition to the injections, there will be one or two other tests to help rule out other causes for the neuropathy. The doc definitely doesn't believe this to be otherwise caused (i.e., an issue for a podiatrist) as this is occurring in both feet/legs, not in one. These tests will help rule out any other issues (of which I have no other symptoms.) As usual, I have thrown everyone for a loop as what's occurring with me should have happened with the Velcade, not the Cytoxan.

Regarding hair loss, if I had gone through a transplant (not a harvest) then my expectations for the return of my lovely locks would be about three months. Since I didn't have the level of chemo required in a transplant, I can hope this return will be far quicker. But I'll set the countdown clock at three months!

Regarding the neuropathy - he's telling me I can increase the dosage of Lyrica (I guess it's pronounced Ly-REE-ka) up to a point and see if that helps. So I'll try taking two in the morning, one in the afternoon and one at night. If that doesn't work he said I can start getting a more narcotic solution, such as morphine (yes Janie, I can get a script for Morphine!) I ruled that out saying I'll fight through the pain - I draw the line at medical marijuana.

Lastly, the doc (Chari) is going to turn me over to Dr Jagannath (head of the group) as he (Dr J) has a closer relationship with Dr Richardson (DFCI). This could be prompted by the request of Dr R for a monthly Zometa regimen over two years. Dr Chari thought that somewhat aggressive but understood this is what Dr Richardson was asking for. Bottom line, I'm happy with Dr J driving things here locally.

I think I covered everything - except that I finally found two hats - one winter one, and one more like a runners cap, that I'll probably never wear as it looks more like a dew rag. I never realized how hard it was to find a nice hat! On that note, I hear the Olbas Oil, Cocoa Butter and LyREEca calling!

Just a Quick Post

2010-02-22T22:55:00.003-05:00

Nothing much to add - my feet are still killing me and nothing seems to work. I am a fan of Olbas Oil though - sort of like the old 'liniment' that they used to have at football practice. I head to SVCCC tomorrow and hopefully we'll be able to do something about the neuropathy and get this over with - finally! I did get my IGA/Lambda numbers back and they look good - still in the normal range. The doc at DFCI said, "they look superb".

So now I'm heading to the bathroom to cover myself in smelly oils and then on to bed!

ok, so a bit TMI

2010-02-20T18:27:00.002-05:00

Hair loss on the head has been discussed. Today I took a shower and shampooed and conditioned my head. Why, you ask? I'm not sure if I can tell you why but it seemed better than soap. Well afterwards, I was putting a little cocoa butter on the head (it's dry here and my head was flaking!) when I noticed my hands were covered with little pieces of hair. What's left is continuing to come out. Not sure if I have the wherewithal to break out the razor.

How does all this work? Well, as I've been told, it takes a bit over two weeks for the hair cells that have been killed to release the hair. And that began on Monday. Now what's funny is I've been able to keep my side burns while the top of my head continues to shed it's little weight of stubby hair. My eyebrows are fine. My chest hair, what little I have, is all there. But Wednesday, when in Boston, I noticed in the shower that my armpits have started to thin. In addition to that, I'm losing hair down below. I expected to be bald on the head, but elsewhere...? I realize all of this is really a bit TMI but hell, it's my blog - I can say what I want!

After Much Delay...Fun With Chemo!

2010-02-19T19:17:00.003-05:00

I apologize for the delay but I headed (pardon the pun!) back to work Thursday so I've been a wreck! My son told me Thursday, "are you excited to go back to work and show everyone your bald head?" I want to be six again!

The short story - I'm in either near or complete remission (this is where everyone stands up, raises their beer and says cheers! Please do so now.) From a regular blood test you wouldn't be able to tell that I have Multiple Myeloma. If you do a bit further research, you'd see that there is a trace of the disease but only a trace. So to keep that trace I will most likely go onto a regimen of Revlimid (21 days on, 7 days off) in the near future. And I will maintain that regimen until the numbers start to change. Should there be a change, I'll go back on the original chemo routine (RVD) for four cycles and then back onto the maintenance program. The additional good news is my genetic profile (cytogenetics) is such that the potential exists I may not have to do a transplant. That is really good news (again, raise the beer please!)

The bad news is my feet are killing me! Firstly, the Cytoxan was given to me with a card (you saw the picture in a previous post) warning me of everything that could happen. I was then told that the full effect would occur in approximately 8 days. I was not warned that in a fortnight, the alopecia they warned me about, would then kick in. Once I enquired of other chemo patients they all told me it takes about two weeks. Why couldn't someone have warned me?!? I had thought I was safe from the clippers! But the bald head, which everyone has clearly pointed out, "...looks good on you...", is something with which I can deal. The feet - that's another matter. But again, nobody seemed to clue in on the fact that what's happening with my feet is neuropathy (except my wife!) DFCI definitely believed it to be neuropathy and suggested a few things (detailed below). I can't say they're working well but I did sleep more Thursday night than in the last two weeks!

For now, I am in a good spot. If I can get rid of the neuropathy then I'll feel somewhat normal (chillier upstairs but normal all the same). I am also going to investigate creating another blog page off this one that simply outlines the various drugs I've taken and the reactions from each so that anyone else who has Multiple Myeloma has a simple resource guide! If you're in this for the short ride you can leave now - the rest is details on what the docs at DFCI told me at my visit.

First - the numbers - I've not gotten everything back yet (IGA and FLC) but the basics show everything else is pretty normal. Blood counts were low across the board but just below the normal ranking. Globulin, TotProtein, Calcium were all normal so everything looks good.

Second - the doc is recommending I go on Zometa, monthly, for the next two years. Where the docs at SVCCC were all saying the amount of zometa I was receiving was the same as most people would get in one year, DFCI had a different thought process. As a reminder, zometa is a bisphosphonate (everyone clear now?) and it's used as a bone strengthener that is usually associated with osteoporosis or other bone disorders (normally associated with older people). DFCI is saying it's not the amount of zometa that is stored in the bones (to strengthen and support) but the action of the zometa getting to the bones that is important. This step, the transport of the zometa to the bone, supposedly blocks the myeloma from getting to the bones, according to DFCI.

Third - post harvest strategy, as also mentioned by SVCCC, will be Rev maintenance program (as mentioned above). This will also include some Dex (steroid) but there's a concern if the dex goes beyond six months. If I remain in CR or near CR then we will maintain the Rev maintenance program.

Fourth - if there's an increase in my M-spike (i can't explain that one - bottom line, it identifies a protein spike specific to the iga, igg, igm lines.) or if I step out of CR then DFCI wants a consolidation of RVD for four cycles and then back to rev maintenance. DFCI's studies, for persons with the cytogenetic profile like mine, were all built around two rounds of RVD so this is right in line w/ the protocols they've already tested.

Fifth - for the neuropathy he provided a script for Lyrica. The wonderful thing about Lyrica is it could: make me high, make me sleepy, make me not sleepy (seriously, one page says sleepiness, the other says trouble sleeping), have suicidal thoughts (honest, it says that) and cause, and I quote, "new or worse irritability". So I may be come 'worse' of an irritable arse than I am right now! Additionally, he's recommended two items to assist with the neuropathy: Cocoa Butter and Olbas Oil. The Cocoa butter - real cocoa butter, has the same type of ingredients as real dark chocolate (the 80/90% cocoa chocolate) and the type of ingredients in the cocoa are beneficial to the nerve endings. I would warn, don't wear clogs - the cocoa butter, on your feet, makes for a slippery situation and your shoes will slip off! The Olbas Oil is a swiss made concoction of menthol, eucalyptus and camphor which is also designed to help. It's also a massage oil - perhaps I can convince my wife....wait - sorry, wrong blog! :)

So all is very good for now! I am still bald but at least the Lyrica is letting me sleep (not doing much in the daytime but will let me sleep at night). That's enough for now!

Cold and spiky!

2010-02-16T08:58:00.003-05:00

You don't realize how cold it is outside until you've gone hairless! Wow - what a difference. And the same goes for ball caps. When you have a wonderfully done buzz like mine (please add the dripping sarcasm that I can't quite replicate in print) those spiky little leftovers will kill you! The ball cap just helps point out where these are located. I'm going to solicit my wife to try and clean up the missed spots in the back of my head as I really look more like "orange prison jumper" bald rather than clean "Lex Luthor" bald. I am not at the stage where I am ready to break out the razor on my scalp - I just foresee that as being one big, bloody, mess!

My feet are still killing me. Granted, we did spend the day at ChuckECheese in the Bronx and the Museum of Natural History but I don't believe my feet should be hurting as much as they do. My wife was kind enough to loan me her PediEgg to help scrape the inch of callous off the heel and ball of my foot. I rapidly applied lotion and felt like I gave myself quite a nice pedicure (sans any nail work.) I was a bit jealous as my wife had gotten a nice foot massage when she got her feet done. I'll have to go do the same.

We're off to Boston today to meet w/ the Docs at DFCI. This will be the first bloodwork I've received since prior the harvest. During the harvest my numbers all went askew as my blood counts were down (since we were taking it all out) and my WBC counts were high as the Neupogen was making them run rampant! Spending the evening with friends in Boston so it should be a nice trip as well. Back to work on Thursday, with a bald head. Shot a message ahead so that everyone can be forewarned.

Thanks all for your thoughts on FBook, here and via email.

Cheers!

I look like my brother!

2010-02-15T08:41:00.004-05:00

Never before have I looked more like my brother. As fate would have it, I slept like sh!t last night and my head felt like straw, to the point of hurting as I lay on the pillow. All I wanted was a nice hot shower and to wash my hair so that it wouldn't be so dry. WELL THAT WASN'T A GOOD IDEA!

So I called in Lil and we had a quick, mid-game huddle, and decided that the story would be I did it for my friend Kieran who lost his hair. I broke out my clippers and did my own marine cut. And I have to say, I think I did a pretty good job. I've uploaded two pics w/ myself and the kids on my kodak site but can't seem to get these to publish and be viewable.

Today I'll also post pics, and my link, on Facebook as I've not done that before - so I guess this is sort of my coming out party for those that aren't already aware. If you're on Fbook you'll be able to see. Until then, I need to sort out how to do this best. Need to go now as the kids are getting crazy!

Need an excuse?

2010-02-14T23:42:00.001-05:00

The entire time that I've been going through all this my saving grace has not been the fact that I've not gotten sick or that it's made me miserable. It's been the sheer fact that I can get through all of this without having to explain to my son what's going on. To him it's life as usual.

This recent onslaught of hair loss gives me pause. The sheer (pardon the pause) reason is I don't want him to be worried or even try to understand what's going on. At some point we can talk about what's going on (hopefully at that point it's what went on) but for now I'd rather keep him blind to the entire mess. My daughter is still young enough it won't register but will only be a memory. My son is too old and will catch things if there's not some sensible reason (aka excuse).

So now the question is, "what's the excuse?" I heard from my friend Kieran that the length of time it took for the hair to fall out is not unreasonable as it's the dead hair cells that are finally coming to the top. Though I've not confirmed this with a doctor, K's comment makes sense. I also did a quick test and tried pulling a bit from the hair that's shorter on the side of my head and I was easily able to pull out a lock without difficulty. This tells me I think all of it's going to go (contrary to my previous comments and hopes).

Now I make the decision whether to break out my clippers and pull a Marine cut or head down to Sigfredo's and get Bruno to give me a clip. Or deal with what happens and hope for the best. I'm thinking the clip is the best bet but first I need to determine what I tell Number One Son.

I can say I'm doing it for my friend or just ask him if he wants to cut it really short with me (no way he's doing that!). So tonight I'm just having a few beers and thinking through the various options (in a public manner as posted in this blog.) We'll see what happens. I'm open to suggestions if anyone has sone great ideas! Cheers for now.

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The hair products?

2010-02-13T13:30:00.001-05:00

Today was the first day that I pulled a pile of hair out of my scalp. I blame it on Ireland (playing Frahnnz in the Six Nations).

I've no idea what this means. I still have the bulk of my hair and the Cytoxan is days old so not sure if I'll just lose some or all but I guess we'll play it by ear (and how much of my ear becomes visible!)

Keep you fingers crossed and pray to the lord of hair products! Not sure I'm ready for the Mr Clean look! ;)

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"I'm not an aminal...I'm a human be-innng!"

2010-02-12T14:45:00.002-05:00

Ok - so I'm almost feeling human again. I did take my full dose of cough med and vicodin before bedtime and felt like I'd slept the whole night. When I looked at the clock it said 0612. WHEN I WOKE FROM THE DREAM AND ACTUALLY PICKED MY HEAD UP TO LOOK AT THE CLOCK IT WAS ONLY 0116. Where do you draw the line on your own body tricking you into believing you slept through the night?!? I did stay in bed (and slept) till just after 6 when number one son came in to wake us up. Though I've been coughing up a mess of stuff and awoke with a head ache, I seem to feel better now.

Yesterday I purchased a B12 supplement and stopped taking my B complex supplement. Today I even skipped the multi-vitamin. So far today my feet feel better but I've not really done any walking (aside from taking my son to school). I finally took a good long shower and was able to change the bandage on my catheter wound. I also had some of my mother's home made chicken soup (very well done mom!).

I can't say I'm fully rested but I feel a 100% better than I have in the last few days. Now I'm trying to clean up all the crap around our computer! Also, I'm working on Excel within the Mac - if anyone reading knows how to create macros or scripts for Excel w/in the Mac, please message me!

Gladys, my feet are killin me!

2010-02-11T11:47:00.002-05:00

Last night I slept without any meds. Felt wonderful when I awoke - only to realize it was 1230am and my feet were burning! I'm not sure what the cause of this is but when I last spoke with the docs they mentioned an after-effect and neuropathy. Neuropathy is damage to the nerve endings resulting in 'negative' (loss of feeling) and 'positive' (increase of feeling - aka PAIN) reactions in the body. Velcade is a known cause of Neuropathy but my last does of V was 12 Jan. I also noticed that a toxicity of vitamin B6 could cause this as well as a deficiency of vitamin B12. I happen to take a B-complex 100 (which results in a heavy increase in various B vitamins.) I'm going to stop the bcomplex and get a b12 supplement to see how that works. The doctors have always been ok w/ the B complex as it should help the Neuropathy. I'm also checking with them to see what's happening. The original source of the pain was a pair of shoes and it feels like i'm banging on my heels and the balls of my toes. Couple that with the fact that the house is sooo warm and lack of humidity that my feet feel like they're cracking.

I still feel a bit of the bone pain but unlike the other night, I was able to get back to sleep albeit with some very bizarre dreams. I then woke up at 630 to get the wife in the shower and ready for work only to find out she wasn't working today! Well, the kids still needed to get up so my morning wasn't completely wasted!

Took a nap after the kids went out for the day (and also took some more cough medicine.) So catching up on rest but still a bit under the weather. Hopefully I'll be better in the next day or so. I know I won't have any issues w/ food as my mother has cooked enough for the incoming army she's expecting to our house! Dad's suggesting a TaiTai cookbook (and after last night's dish, I'm in agreement). So look for book sales to begin in the near future!

cheeers.

Fair To Midland

2010-02-10T08:42:00.003-05:00

Day three is here and I'm starting to actually feel like myself. The catheter is being removed today, much to my pleasure and delight! Yesterday I was miserable - the evening in the hospital, the day in the pheresis area, approximately 3 hours of sleep and just not being able to get comfortable. And then there was the cough that rattled through my chest and left my throat feeling as if I swallowed razor blades! So now, 4-5 drugs later, I'm starting to feel somewhat normal (fair to Midland).

I was given (from this point forward to be known as) the Aflack antibiotic, then after my harvesting I was given a scrip for zithrocycin (zpack), robitussin w/ codeine and I still had my vicodin. I took the cough medicine when I first got home expecting to get knocked out and sleep for a good three hours. I slept one! By the end of the night I got myself ready for bed, took my two TBP of cough syrup and two vicodin hoping for the best. When I woke I felt better than I'd felt in days. Then I realized t was only 330 in the morning. I took more cough syrup, one more vicodin and went back to sleep - or at least tried. I guess I just don't react to drugs a expected. So I did sleep from about 1000-0330 but nuthin after that.

I've now had the catheter removed and am feeling pretty good. Still am not over the cough/cold but can feel the antibiotics working. You are all lucky as I opted out of taking a picture of the catheter after it was removed. It wa pretty amazing - snipping the stitches hurt more than pulling out the cath.

Enough for now. (not checking for errors!)

Day 1.5 and 2

2010-02-09T14:22:00.002-05:00

So they knew I had a cold and were worried if I had a fever. I was feeling like sh!t last night but didn't believe I had a fever. They told me to watch if I started coughing up anything with color and I promised to keep an eye out. So before bed, whilst attempting to gargle w/ Listerine, i choked, put myself in a coughing fit and sure enough - good, colored phlegm! Mm, mm, good! So then I took my temperature (I was watching for 100.5). In right ear, 101.3; in left ear, 101.5; switched to a real thermometer and got 101.1 and 101.3. So I called the hospital.

As a precautionary measure they had me come in and get some antibiotics via IV. I can't remember the name (kept calling it Aflak!) but it was Amiflax or something like that. It was really cool - prestone green in color! They took blood cultures, from both ports and both arms to see if they could identify if there was any infection. This was all done around 12/1230 and I stayed the night at the hospital. Needless to say, I never broker 100 at the hospital but they realized I definitely had issues. The night nurse ran into the pheresis nurse in the subway and told her she recommended a chest xray. Bottom line, fever's gone, chest xray was clear. I'm coughing up some miserable crap and they've given me a scrip for robitussin w/ codeine so I should be able to take some of that and sleep like I haven't slept in days.

Now for the good news! On Monday I was able to get 9 million tcells. My target was 10 million. Today I had already filled about 2/3's of what I had filled on Monday so I figure I'm in the 15 mm range. Catheter comes out tomorrow so between sleep tonight and the catheter being gone tomorrow I may be a happy camper - if i can get rid of this cold!

by for now!

Day 1

2010-02-08T17:21:00.001-05:00

I survived. Not sure how much I was able to get but it wasn't difficult. The process that is. Sitting in a bed for 6 hours was miserable. My cold also is NOT going away and has left me beyond miserable.

I'm home now, just need to be cautious that my cold doesn't turn into a fever. Drinking lots of Gatorade and trying to cough out the crap.

Now since I promised - here's the T map with all the "wires" connected. There's a level of comfort that the device is set up with "color by number" tubing. Put the orange striped tubing when heading to Malden and the green strived tubing for bagels in Brookline! (my Boston fans should like that reference).

Till tomorrow...

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Thus far today...

2010-02-08T14:04:00.001-05:00

This is what we're after. The clearer stuff at the top are the tcells. I should be done for today soon.

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My own tap

2010-02-08T08:37:00.000-05:00

So I'm getting ready for the harvesting. The nurse needed to take some blood for labs prior to starting. I asked, "which arm" and she replied, "neither". I have a direct tap!

Literally - she just plugged in, pulled what she needed and I just laughed.

And here's a pic of the pheresis machine.

Doesn't it look like the T in Boston? I'll post an 'after' shot as well (when all the tubes are hooked up.)
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Super Bowl - Super Sick!

2010-02-08T06:21:00.000-05:00

I spent yesterday miserable. The cold I had been fighting last week kicked into full gear Saturday night and left me miserable on Sunday. What's better - the Neupogen started to make itself known as well. Now I understand bone pain! And yes, it's sort of like rugby, afterwards, after the beer has worn off! I didn't want to lay down as I needed to bend at my waist/hips to relieve the dull ache occurring there. I was able to get myself a bit of a nap, waking only once, by my own snoring. I did end up taking a vicadin along w/ another mucinex and started to feel better by the middle of the SB game. It was probably the first beer-free game I've watched since I was in Ohio and the parents let me stay up to watch the Denver game (brother will laugh at that - were the broncos in the SB in the late 70's?)

Today we venture into the harvesting. I start around 830 and have about 6 hours sitting in a bed with my blood running through a cycler. I'll post when it starts (keeping everyone in the play by play) and will have plenty of movies/tv shows on my iphone and my kindle to keep me busy. Wish me luck!

Catheter and Bone Pain

2010-02-08T06:20:00.004-05:00

Ok - this one is really only for those that are currently going through or perhaps will be going through the harvesting process in the near future. If there's anyone out there that has gone through this and would like to add their comments, please do.

Bone Pain - the Neupogen increases the creation of the t-cells that you're going to harvest. These t-cells are created in the bone marrow. So imagine if you did 10 push ups a day then you'd feel pretty good and you'd be able to do 10, perhaps 20, without skipping a beat. Now today, and the next five days, you need to do 100 pushups a day. You can imagine the kind of pain you'd feel - and that's what's going on in your biggest bone marrow locations: hips, legs, chest, upper arms. I hadn't felt this till the last day of the neupogen shots and it was like having a crick in your back and you couldn't lay down or sit; and standing up, after awhile, would make you sore.

The harvesting catheter - the catheter used for the harvesting is more a temporary insertion as we'll only need it for a few days. If I was doing a transplant immediately after then they may have put in a medi-port or porta-cath (I can't confirm that, you'd need to confirm w/ your doctor). As seen in the posted pics, this piece is long. The doctor warned me of a potential for pain in my shoulder, behind the catheter. I haven't felt that but I have felt something similar. I can literally feel the catheter in my body. I am crossed as to whether or not I should have viewed the xray pic I put up showing the catheter placement. If I wouldn't have known I may have been better off. Having said that, knowing let me know it wasn't something bizarre happening to me when I laid down at night.

As mentioned previously, the catheter is flexible but not soft. So as you move your body, it's putting pressure internally which can cause some pain. I'm not playing any sports and I've been sick all weekend so I've not been doing anything strenuous. However, what I've noticed, is two things:

1) dull pain - I feel the dull pain in my shoulder, behind the cath and I can sometimes feel it in my chest on the other side.

2) when I lay down at night it takes a good 15-20 minutes for everything to 'settle' and allow me to lay down. It feels like something is out of sorts and you may need to stand up, stretch about at the shoulders and then lay back down. The vicadin didn't seem to help this much but I think everyone reacts differently to those drugs.

Again, the purpose of this post is for anyone that has the disease and is going through this. Sometimes the explanations you get don't full prepare you for what really happens. I hope this helps and if you're going through it as well, please put in a comment with your experiences.

The Whole Story

2010-02-06T09:39:00.007-05:00

Let's go through the whole story of what happened yesterday. It was tons of fun and is part of the reason why I hurt so much yesterday. I have to say, one Vicadin into the day, I'm still sore but I don't think I'm as bad off as yesterday (this was posted earlier this morning - took 2 more Vicadin, a Mucinex and saw Eng beat Wales in rugby so I'm all better now! :)

We arrived just prior to 0730 and registration wasn't available yet so they just sent us on to surgery. It was there that I started things off right. As I'm holding the door open for my wife, I let my hand slide down along the emergency release bar and my pinky found its way into the housing of the release bar, proceeding to get stuck and twisting/pinching my pink causing me to scream, "ouch!" and having my wife and the three nurses enjoying their pre-surgery coffee to look at me as if I was "one of those people". "Any blood?" and "do you need anesthesia" were the two laughing comments I received. No blood, no foul - they sent me back to the room to don the hospital fashions: smock, robe, footies and a beautiful blue hair net - 'in fashion you're either in, or your out'! They then showed me the catheter that will be put in (see prior pic) which had me a bit nervous. As I mentioned to my brother today, this isn't like a piece of soft, flexible aquarium tubing - this is a bit stiff (see my reference to not being able to put my arm over my head for confirmation on this point.)

I avoided all thought on the catheter and was met by the nurse, anesthesiologist and, finally, the Doctor. All of them gave me the warnings - nausea, going under, you didn't eat anything, how much do you weigh - but the one that caught me most off guard was the fact that we are putting a pointy piece of plastic into a vein in your chest - and there is the slightest (really slight) chance that we may puncture a lung - , "you're ok w/ that, correct?" "uhhh....sure doc!"

Then it was time - and Lil was brought to the waiting room while I was brought to the OR. I've never been to the OR before. I've only seen the OR on TV or in movies. I've never been to the OR before - and it caught me COMPLETELY OFF GUARD!

My first thought was either Star Trek or Aliens - it was all white, centrally focused on one area, very clean and two big important looking lights over an extremely narrow operating table. I know I paused upon entry - it all got VERY real!!! I sat down on the table, which was heated so I was fine in the gorgeous hospital smock (that of course, opened in the back). There was a towel rolled, and placed lengthwise on the table so that it sat under my spine causing my shoulders to roll down (thus opening them for easier entry). Everything started happening at once - one of the male nurses ("do you need any anestehsia" from before) said, "hi - how's your pinky?" I couldn't recognize anyone due to the mask. I asked them if I could get a mask (and I think I was ignored). The anesthesiologist (i need to find a shorter way of saying that - it's tough to type) then started to put in the IV with a convenient table attachment that my arm can rest on.

Now this guy was all about effieciency - I've been through quite a few IV's in the recent months and can tell the good, the bad and the ugly. He was hideous - it hurt, he then taped it down, pushed on it a few times for good measure and started it flowing. He then went to the other side, wrapped my arm in the blanket over me and then tucked it under the table pad so my arm would stay in place. My shoulders were wider than the table by about two inches on either side, if he didn't do this, my arm would have hung by the side of the table. He then returned to the other side, took my arm w/ the IV and proceeded to wrap that arm, giving a few good nudges to the IV, and tucking it under the pad. At that, he removed the table attachment. While this was going on, the other nurse proceeded to strap me in - big belt around the legs and waist, pulled tight so I didn't roll off. I went from Aliens to Frankenstein in no time flat!

The doc then walked in (couldn't recognize him due to the mask) and asked how I was doing. I told him I wasn't prepped for the OR - had to repeat this as one, I was a had a bit of nervous laughter and two, his hearing aid wasn't working too well (forgot to mention that earlier!) The table then started to tilt up at the feet and I was told to expect a warm sensation in the IV to which I replied, "I don't feel anything warm but I think it's starting to work as I'm feeling kind offfffff.......(out cold)."

They then started moving me around and I was a bit pissed - I mean, why couldn't they get me in the right place so we can just get this done and over with.... Then I realized we were over and done with. They asked me to step down and sit in a chair - at my first step I said, "wow, this stuff is good." They then covered me with two warm blankets and rolled me out to the recovery area. I fell asleep for a bit, then the nurse came and took my BP and Temp. He told me to go back to sleep but by that time I was up and he got my wife for me. He also asked if I'd like anything to drink and brought me a great cup of coffee, graham crackers, peanut butter crackers, etc. The xray tech came in later and took pix and also told me where to get the best bacon, egg and cheese on a roll (which was exactly what my "doctor" had ordered after going through all this crap! I then had the bright idea of posting the xray and he burned me a disk of the shot and my last three bone surveys!

Two nurses came back and started fixing me up, removing the IV, etc. Apparently I was fine. One talked to Lil about the customer service survey they'd like me to complete (WTF?) and the other proceeded to tell me I shouldn't be operating heavy machinery, driving a car, signing any documents (really, I'm not supposed to sign anything - not like I had any big contract signing scheduled that day, but really?) He then told me that for the next 12 hours I should only have oatmeal or something bland like that, "...uh, so no bacon, egg and cheese on a roll?" "Oh no, anything that might repeat on you wouldn't be good as you may get sick". I nodded my head while crossing my fingers - nothing's keeping me from that BEC on a roll! I spent the next hour waiting on my Neupogen injection as the nurse that usually gives them was out and everyone was a bit flustered. We finally finished and left for the BEC!!! I never did get to registration - I wonder who's paying for all this?

Instead of going to the technician's recommendation we found a quaint coffee shop that had great coffee and a BEC on a roll. Only issue here was the roll was a very fresh, very healthy multi-grain nut roll - not the greasy spoon I was hoping for. But that's ok - there was fun to be had here! The place was small, three two-tops by the window and only about 6 other tables in the place. There were three girls taking up most of the right side of the restaurant so we took the middle table by the window. While doing this, a guy walks in, survey's the tables and sits at the one next to ours - I mean really! Worse - he brought in a Starbucks coffee and sandwich from across the street! But wait, there's more - he's an actor and was studying his lines - "Dammit Jim, I'm a doctor", "But Margie, I really DO love you", "This town isn't big enough for the two of us", "Let me introduce you to my leetle friend!" I sat there quietly and ate my BEC and tried to talk to my wife. But in another, alternative universe, I was turning to this guy saying, "go back to Jersey and don't quit your bartending job - you suck!" It was the meds speaking, I think the nurse had earlier mentioned, "don't sit next to any dufuses in a Chelsea coffee shop" in addition to the contract signing.

I decided I didn't want to go home and instead ventured to the Apple Store - this was my first big mistake. I should have gone home and gotten the Vicadin - as you saw from my previous posts, I fell to its sultry suggestions rather quickly as I was sore with a capital ORE! But no, we went to SoHo and found the Apple Store and proceeded to chew this guy's ear for 45 minutes. I finally realized he may be sick of me when I said I've no more questions and thank you. To my surprise he asked if he could ask me a question (much to my wife's dismay and crestfallen face as she was sure we were finally going to be able to leave). He asked my thoughts on the iPad - to which I then needed to talk for another 20 minutes and display my Kindle. We finally left and it was the worst subway ride ever - I was beat.

I got home and immediately sent my wife off to CVS for the vicadin. I laid down, only to find out that really hurt. I spent the rest of the day trying to find a comfortable position sitting on the bed watching primtimetv on demand (catching up on Caprica). She came back at one point and I thought, "finally, the drugs have arrived", only to be told it would be another 20 minutes before she could pick them up. The rest of the day was uneventful - I was able to update posts, pull my xray pix and finally call my mother. The vicadin didn't seem to do anything and now I was really getting that chest cold that had been creeping up on me. My poor brother - he had been fielding all my mother's calls as she didn't want to bother me or potentially wake me up as my one post, early in the morning, said I can't take calls! I give her credit - she listened!

That's all for now - this seemed a bit drawn out - I hope you enjoyed it - it's much better in the telling rather than the writing!

I slept!

2010-02-06T07:13:00.001-05:00

I made it through the night without too much trouble. I definitely feel better today than I did yesterday. I woke up about 0230, used the boys room and took two Tylenol for the remainder of the night. The two vicadin I took prior to sleep didn't really do anything.

If you've seen the xray then you should understand this next part. When I put my right arm up over my head we're bending the cath and it puts pressure on the right side of my chest. So I've pretty much laid flat the entire night. I did test laying on my side and was able to do it but not for any length of time.

I got better sleep than I expected and feel pretty good for now.

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You don't believe me?

2010-02-05T19:39:00.003-05:00

Ok - proof of how big this thing is!

You'll have to click and enlarge the image but the left hand pointer is pointing at the end of the catheter and the right arrow shows where it comes out of my chest (not my neck as previously, and mistakenly, posted). If you look closely, under the right arrow, you'll actually see the two red/blue pieces that are actually outside of my body. They're very, very faint.

I've got a whole day of stuff to write about but will get to that later.

...I'm waiting

2010-02-05T15:35:00.001-05:00

Ok - it's about 25 minutes since I've taken the Vicadin and I still feel like sh&t! I'm fine, just sore as sh&t!!!

More later.

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Wow backwards is OUCH!

2010-02-05T11:23:00.001-05:00

So the doc asked, "what kid o pain killers do you have at home?". I'm guessing that the respectable, cancer patient, household has much more powerful painkillers than just Tylenol. The doc said, "I'll give you a scrip for Vicadin." I said sure but I wouldn't need it.

I lied!

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WOW!

2010-02-05T09:00:00.000-05:00

I'm out of surgery. More on that later. But look at the freakin' size of the thing they put in me. The whole thing is in there. It's not cut to fit, they use the whole tube!

More later. Enjoying coffee and Graham crackers. I can't take phone calls (mom).

And then the pig says....

2010-02-05T06:37:00.002-05:00

Have you ever walked up on the end of a joke and not had any idea of what the joke was about? But of course, you nodded your head and smiled as if you were there the entire time, trying, desperately, to grasp the meaning of the joke and ending with laughter only because everyone else was laughing as well.

Today I have the surgery to insert the catheter in a vein in my neck. This is a simple surgery that will allow the pheresis (sp) to take place at a faster rate (sort of like cable modem vs dial-up!) And beginning Monday, I start the harvesting process. It is true that I had a heavier dose of chemo (Cytoxan) last week and I've started getting the Neupogen injections Wed. But neither of these have really had an impact of any significant level. So for me, I feel pretty much as I have felt. Perhaps my stomach bothers me a bit and I seem to be breaking out on my arms and shoulders like a big-time wrestler on steroids (without, of course, the muscles and tight jumpers!) Bottom line though, I really don't seem to be noticing anything. My disease is in "Near Complete Remission" which means if you look at my blood work you can't see anything. It's not until you look very closely, with a very big wrench, that you can find a small semblance of what was the disease. This is a good thing!

Perhaps I've entered the conversation a bit late - because the number of emails, comments at work, and, of course, the calls from Mom have me wondering if perhaps I really look like the defecation of a large canine! Three people at work wishing me luck and hoping everything goes well. One that's going to send me positive thoughts. Various emails all with this note of concern. FIRST, LET ME BE CLEAR - IT'S ALL VERY MUCH APPRECIATED!!! Second, let me be doubly clear - I'm fine! I'm going to be fine! I'm going to get a giant pint of Guinness when this is all through (perhaps more than one!)

Yes, I have cancer, and yes, I've beat it into 'Near Complete Remission'. I will harvest the t-cells and then continue on as if nothing has happened. I may still be on steroids and may have some very interesting stories about the in/out process of harvesting, but I don't expect to be in a position where anyone should worry. And I most definitely do NOT believe I look like an example of canine defecation.

So, should you start offering me concerns and wishes, don't be surprised if I respond as if you've just entered two thirds of the way through the joke with, "....and then the pig says, what do you think I am - a piece of meat?!?" and then start laughing hysterically.

Just chalk it up to me being a nutter as always! Have a great day and I'll try to send pix from today's surgery - supposedly they're giving me some type of anesthesia that will put me into a hypnotic state. I'll make sure the wife has my iPhone so we can video tape me clucking like a chicken!

Pschyo-so-what?!?

2010-01-30T08:27:00.005-05:00

When you're taking a week off between medications then you are sort of used to what you're getting. I was able to handle 40mg of Dex and did even better with 20mg of Dex (last two cycles of treatment). Yesterday I received 10mg of Dex - at 03:30 I was well aware of that point! I finally fell asleep around 0400. Second, "potential side effects are nauseau,..." So all night I had heartburn/upset stomach - no porcelain god trips luckily - but part of me thinks it was the 4 portions of Chinese food followed by HFSundae and part of me is thinking"...potential side effects are nausea...." Bottom line, I am fine - had some cereal this am and am working on my second pint of Gatorade. At some point I need to get some additional sleep but will sort that out later! So is it psychosomatic or what?

For now - I need to voice a concern - as some of you who have been reading my know, my friend was diagnosed with AML, a version of Leukemia. First, he's doing well and potentially may be able to get out of this without a bone marrow transfer. Second, he found his sister was a match should the BMT be needed. Third, he hosted an event at Cornerstone Tavern (a friend of ours pub in Manhattan and highly recommended for those looking for a nice pint and some pub grup) to get people to join the bone marrow registry. Along with being a great time, they had over 600 people join the Bone Marrow Registry. For those that couldn't attend but still want to put themselves on the registry for a match it would be near and dear to both mine and Kieran's hearts. Get details here.

So Kieran's got some good karma working for him and the results are starting to show. First, during my treatment I didn't think to take a picture of my room as it really wasn't much and I wanted to be in the chair anyways. But when I asked for a snack the little sandwiches they brought back were quite nice. See picture here:

Later on that evening I received an email from K telling me he had moved rooms and sent me a picture. Looking at this, I'm guessing that his menu selection is slightly more, 'diverse' than mine. Additionally, if I'd had a room like this I probably wouldn't have wanted the chair! This picture reminds me of Matilda Hospital in Hongkers! Keep up the Karma K!

All is good so far!

2010-01-29T22:28:00.002-05:00

Sorry for not posting an update earlier. I'm fine (yes Mom, I'm fine!)

I survived the chemo - 2 hours of hydration, an hour of drugs and two more hours of hydration. Part of the chemo was Dex, and as I predicted...i fell asleep! What a bizarre sleep - kept dreaming the wife was talking w/ the kids when I realized it was nurses dealing w/ patients! I did ask for a snack after I got the chemo (and before I fell asleep) and they were able to get me a 1/2 tuna sandwich, 1/2 a vegetable wrap, a V8 and a grape juice - doesn't sound like much but I was starved and it was great.

I didn't get to eat anything else till dinner (which was a wonderful selection of leftover Chinese food!). I will say that I ate like an absolute porker! And of course, now I feel like an absolute porker!!! I probably shouldn't have followed it with a hot fudge sundae but I was told eat whatever you want, even if it's not healthy! And the boy passed his belt test in TaeKwonDo so we HAD to celebrate. It was good but I definitely didn't need it!

So things to watch for going forward: blood in the urine and hydration. If I do get nauseous they'll get me something for it. I'm also told the Neupogen (starts next Wed) will cause bone pain. I had likened this to what I experienced when I took the Zometa - but this is less muscular and more bone. To the point that the Doc asked what painkillers I have at home; he seemed upset to hear I didn't have anything stronger than Tylenol. He did offer to remedy that should the situation reveal itself.

I'll post more this weekend if anything occurs but I'm expecting all to be rather tame!

Thanks for reading.

Aaaand...they're off!

2010-01-29T09:59:00.001-05:00

Let the fun begin! I show up at SVCCC today, say, "hello gents" to the guys in reception only to find out I don't have an appointment. Well that's a bit of fly in the ointment. In my best attempt at The Force I simply tell them I DO have an appointment ('these aren't the droids you're looking for') and they call Zach who comes out to assist. Zach is the one who has scheduled all my appointments and is also very receptive to the Force. Last Friday he tried to reschedule my Tues appointment - needless to say I kept my scheduled appt! Apparently Zach had mistakenly cancelled my appointment today. We had a talk with the treatment center and they snuck me in.

Luckily I've got Donna as my nurse once again (the Newfie!). Donna was my nurse for my first chemo treatment - refer back to that post for details. Like that time, Donna asked, "is this your first time?" and I replied, "yes." So now I'm in a room with the red toolkit. For those of you who haven't referred back to the previous post, the red toolkit is there in the event I'm allergic and have some massive reaction to the drugs they're giving me. I'm in a room for the same reason. I hate the bed - I want the chair! You never forget your first time!

I'm receiving Cytoxan today. Here are the details:

I've got two hours of hydration about one hour of chemo (Cytoxan, Dex and Kytril for nausea) and then another two hours of hydration. Did I say I hate the bed?!? I've got my Kindle; Farscape and Logan's Run on the iPhone and a bottle of water. We'll see how things go.

If anything more happens I'll be sure to post.

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Details, details....

2010-01-12T19:53:00.003-05:00

So as I meet more people related to the harvesting and read more 'stuff' (ok, only one stuff but I was able to upload it to mine and Mom's Kindle to make for easy reading!); I find that, like any good politician, what I wrote earlier may not be totally correct....

Yes, you guessed it - I did try it but I DID NOT INHALE!

Ok, now that I've gotten that small tidbit out of the way :) I will add modifications, alterations and other finely tuned pieces of material to make sure you all are aware of the intimate details of the process I will be going through. First, for any of you that have ever gone in for a blood test, you may have had the shot in the arm and filled up a tube or two. On my best day I had to fill four. Today, I arrived for treatment and had one tube taken for CBC (blood profile, RBC, Hemo, Hemato, WBC, Platelets, etc.) I was warned that when I return that afternoon they had more for me - and they were NOT joking! I swear, I thought this was the nephew from Caddyshack ordering at the halfway house, "i'll have a hamburger, and a hotdog, and a coca-cola..." This lady just kept pulling out tubes - honest!

Luckily, I, "...have good veins." It didn't prevent me from counting out random numbers while she tried to count the total number of vials in comparison of the total number of labels she had printed. I swear, I almost got kicked out, "7, 3, 12, 26, BINGO!" Apparently they need all these vials to test the overall counts (iga, lambda, etc) in addition to testing the t-cell counts (I believe those are the orange tubes).

Now these are the 'modifications' I've learned thus far (and I reserve the right for future modifications as my level of knowledge (for those of you familiar with the 12 sided die, my skill and resource level) increases).

- it's not a portacath - disregard my wikipedia reference (though that was kind of cool) DO NOT LOOK AT THIS IF YOU'RE FAINT OF HEART - first, it's not me, but it is a real picture! That's going to be messy! (photo credit is due to Thompson Cancer Center and Google search)

- the neupogen injections happen from Wednesday through Sunday - every morning I have to got there to get my shot, including the weekend. Now, if I was daring, I could do these shots myself; simply find a piece of fatty part of your body (ok, so that's not tough right now after the holidays), pinch it between two fingers and place the needle within the fatty part and 'shoot'! Isn't that simple.... Sir, ahhh, sir, are you awake? Someone call a nurse (oh sh!t - I'm home, no nurse!)

- The Cytoxan (given 1/29) takes a week to kick in, which means 8 days later I'll be at a very low WBC count. The White Blood Cells are your immune system - low blood count means boy in the bubble - can you drink Guinness through a bubble? This means we ship the kids off to the Aunt's house for the weekend (don't you love portable germ factories) without all the fun of going out and not having to wake up for the kids the next day. And I may lose my hair - Bruno (the barber), here I come - take it down to the tarmac and smooth it over.... That is a last resort - I don't think I'll make a very good Mr. Clean. But if it goes there, there will be a reflective photo collage - how many things can I reflect off my chrome dome? I'm going for some serious Dali-esque shots!

- The harvesting is pretty much the same as I described earlier. Bring a good book, load up some movies on my iPhone and potentially see if I can get my brother's big screen tv glasses to work! 6 hours in a room, with those tubes, blood coming in and out. I will do my best to describe ALLL the sensations - just like being there. Perhaps I can get James Cameron to do a 3D movie with smellovision (or do you think Dolby THX will be enough?)

The rest of my tests today were fun - I had a sonogram of my heart (it's there and it works and I don't have a baby). I have a new respect for expecting mothers - that stuff is COLD! Next was my breathing tests - including a little glass room which I guess isolates the pressure for when you breathe through the tube - apparently I did well (read as I have a lot of hot air, witnessed by this drivel) Then the radiology department was closed (the light burnt out in the xray machine - reschedule that appt. The vmail was as follows, "Regarding your appointment today, the x-ray machine is broken so please DO NOT SHOW UP FOR YOUR APPOINTMENT TODAY." I don't think she looked at my schedule to see I had seven other appointments that day.) I met with the nutritionist - at the point of harvesting and on day 8 after the Cytoxan, I have to maintain a Neutropenic diet - in other words, food that can have any sort of live bacteria is a no-no. Cheese Whiz is good, Spam is good, burnt steak is good and yes, Mom can make chicken noodle soup but it must be eaten w/in 72 hours of being prepared. Essentially, anything in a can is OK - actually, I'm embelleshing a bit, I can do more but cheeses are bad, fresh fruit must be washed well or peeled - just be cautious! I also met the psychotherapist! She asked if anyone in my family had any history of mental illness or had any psychiatric treatment - my response, "not that my mother's ever admitted to...." Was that the wrong thing to say? "How does this process make you feel?" 'Aside from the bed wetting, I'm pretty much getting used to the idea.' All joking aside, we connected and she has a cousin in Hongkers that I'm going to try and see if anyone knows. I'm all clear on the shrink-front!

So that's it for now. A special thanks to Danny for sending me his message in a bottle, though his response to my last post would have been good fodder for the blog. Something about reading my blog while he was at DFCI getting ready for a radiology treatment. When I mentioned "not RVD but just VD" he apparently laughed out loud and the crowd in the waiting room thought he had laced his Barium! (didn't I mention Danny would laugh at that!?!)

As they say in Bangkok - night, night Mama San!

Well Ollie, what should we do next?

2010-01-02T13:57:00.006-05:00

Twas a few days after New Years and all through the house,

Not a creature was stirring, not even a louse (thank god!)

The kids were at the Aunts and Mom & Dad are a cleaning,

Christmas is put away and it's time to do preening -

Stuffed animals, toys, clothes, and plenty of other stuff,

Either in the bin or out to goodwill - looking around it's still not enough!

But enough about the holidays - we're filled with good cheer and my last doctor visit shows I'm in a form of chemo driven remission - they did use the term CR (complete remission) and I had reached that after Cycle2. Apparently I am ahead of the bell curve (for once in my life I can tell my mother I'm ahead of the bell curve!) with my reaction to the chemo. Based upon these results I'm continuing on Cycle4 but we have removed the Revlimid and I am only getting the Velcade and Dexomethazone (so no RVD, just VD - had to add that so Danny will laugh!)

Revlimid, as I understand what I've been told, will inhibit the production of the t-cells needed for harvest. It's necessary that a full four weeks have past after Rev before the harvesting can take place. Since I've so drastically dropped they expect that my plasma cell penetration, which last was 80% is down to normal numbers (I'm saying 2-5% but I have no idea what the actual percentage, is - what can I stay, I didn't stay at the Holiday Inn Express last night!) So my body is in perfect position for the harvest and using the Rev could potentially make it more difficult to get the good cells I need at time of harvest. So I'm off the Rev for now in prep for the harvesting. Here's where it gets fun....

My schedule as it is thus far (with explanations of all below)

5 Jan, 8 Jan, 12 Jan - Cycle4 continues - VD chemo sessions in morning
12 Jan - after chemo I have a full regimen of pre-harvest tests (day out of the office)
29 Jan - chemo with Cytoxin (below) 5 hours on an iv, prep for harvest (day out of the office)
3 Feb - Neupogen injections (below) to amp up the t-cells
4 or 5 Feb - insertion of a 'portocath' in my neck/chest area (day out of the office)
8 Feb - start harvesting, 6 hours per day in a chair pulling out the good stuff (it's harvest time - in the middle of winter!) (week out of the office)

First, the explanations (with hopefully useful links to Wikipedia for those that truly desire to be that As Seen On TV Doctor).

Cytoxin - the link is to Wikipedia but my understanding is Cytoxin is used to prep for the harvesting and specifically will assist in pushing back the bad proteins and prepping the body for the actual harvest. This is a more rigorous chemo therapy and could cause nausea and hair loss (although that varies from patient to patient, so perhaps I'll get that close haircut just in case! :)

Neupogen - "is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes." Ok - did everyone get that? This is like steroids for t-cells and will amp them up so that when the harvesting takes place we're getting the most bang for the buck. No real side effects aside from potential bone pain which will be less than I experienced from the Zometa.

Portacath - This will be my Borg plug!! A catheter, inserted into a vein, in my upper chest area. This will be in for the duration of the harvesting. I need to be careful in the shower to avoid getting the bandaging wet and I need to be careful with the kids as they can't be bangin on daddy's plug!

Harvesting - the allotted time for harvesting is 3-5 days. I'm allowing a week (5 days) as I'm unsure how long the entire process will take. Having said that, the doctors are saying due to my good numbers and current physical health (I have them all fooled: insert evil, world-dominating doctor laugh here) we may be able to get all we need within two days and once counts are confirmed (number of t-cells taken) we'll be able to remove the portacath. I don't expect there will be any side effects, potentially just tired. I also don't expect the harvesting process to have any concerns to my day to day health.

So then...? There are two options: immediate transplant or maintenance chemo and monitoring. The first option will be much more involved and is a more permanent step in trying to reach a more long-term remission. Let me be clear here, there is no cure for my disease, not yet. By doing the transplant I'm killing all the existing cells and then replacing them with what I have harvested. I intend to harvest enough to handle 3-5 transplants if needed. With the transplant they expect I could last a year or so without any chemo, drugs, etc. before the disease resurfaces. This could be longer, it could be shorter, bottom line, it's not permanent. The second option involves me taking the Revlimid 21 days on, 7 days off, for the foreseeable future until some level of toxicity becomes present or it just stops working and the disease resurfaces.

With my reaction to the drugs thus far, option 2 is where we are headed. I've had a great reaction to the drugs and hopefully will be able to keep that up and buy myself a year or so and in the meantime some Doc at DFCI or SVCCC will come up with a cure. At whatever time the drug resurfaces we can then schedule the physical transplant. Till then, I need to call CVS in Lenexa, KS and speak to a pharmacist each month and then call Celgene's 'RevAssist" automated phone survey to confirm, if I am having sex with a woman who still has her womb, that I'm using protection. I also have to confirm I'm not chewing the capsules and, on a serious note, that I'm keeping them away from the kids. One day I'll record the Celgene number and post it as it's quite funny to hear an automated fon voice talk to you about how you're having sex! Apparently I'll still need to have the Dex, but I may be able to take this orally as the Rev is oral as well. So I'll still be on the steroids, reduced amount hopefully, but it's not been that big of an issue thus far. I'll just be happy not having to deal with the twice weekly iv's and mess that goes with it. I will have to go in each month for monitoring.

As an aside, if I were to let this go and just not take anything, they expect the disease would return within months if not weeks.

So I hope that fills everyone in. It's good news, this month will suck with a bunch going on but I'm really pleased with how everything is going and looking forward to getting back to a basic routine and not having to get over to the hospital so often. Everything I've mentioned above is out-patient work so it's easier and less explaining I have to do to the kids!

Stay tuned for more as the saga progresses!

Coming Soon!

2009-12-31T00:10:00.001-05:00

Ok so the holidays have been crazy and I'm migrating to a Mac (thank you Santa!).

Needless to say I've been busy. Just had my visit following Cycle3 and things look great. I have a lot more details but have our annual NYE party tomorrow night so expect more details in the next few days. I hope everyone can stand the wait (actually, I'm not worried about that - you'll get the update when I post it, so there! ;)

Happy New Year to all!

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Need O+ if you can help!

2009-12-15T08:43:00.002-05:00

As I mentioned in a previous post, a close rugby buddy of mine was diagnosed with AML (acute myeloid leukemia). Unlike my disease where they are attacking the proteins with an intention to harvest and then transplant my own cells, he's in a position where a transplant of his own cells is not an option. He's also having to go thru a lot more with respect to chemo, etc.

The biggest issue though is blood and platelets. A bit of a lesson. I have O- blood, sometimes referred to as babys blood as it can be used for almost any blood type. My friend Kieran has O+ blood which means he can only get O+ blood, which isn't readily available. Hence this request.

Anyone in the NYC area with O+ blood that can donate please do. I've included a link below from NYU that was provided by Kieran's sister. Blood and platelets are needed but you must be O+.

Thanks, in advance, for anyone that's able to help!

Patient: Kieran Holohan
NYU Hospital 31/1st
The following link should give you all the details necessary. You can request the donation go right to Kieran. If not needed at the time it will be given to someone else - which is how Kieran will be able to spend Christmas with his family, thanks to the blood of others. Please help if you can!
http://www.med.nyu.edu/patientcare/guide/blood-donations.html

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Hot off the presses

2009-12-11T16:08:00.001-05:00

Just got my labs back:

Calcium - 8.4 (just below the minimum norm value - where previously I was worried about it being high)

Total Protein - 6.3 (6.9 is the minimum, norm value so now my protein counts are low! From Oct'08 they've been 9 and above)

IGA - now this is where the fun starts. *** 276 ***. Yes, 276 - my IGA COUNT IS NORMAL!

What does this mean? Beats the F out of me but I'm celebrating tonight!

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Let's Reiterate - Get a Check Up!

2009-12-10T23:33:00.003-05:00

Ok - so I happened to look at my blog and realized, "holy sh^t - I write alot." Some of you have reached out to my parents or others and have told me you've enjoyed my viewpoint (some have even said I come across as funny!) There are some things I've written that are relevant to the moment and there are others that should be repeated - and here's where I get on my soap box (yes, again!)

GO TO THE DOCTOR - GET AN ANNUAL PHYSICAL.

For those with the attention span of a flea - LOOK A NAKED GIRL - NOW GO TO THE DOCTOR AND GET A PHYSICAL!

Yesterday a rugby buddy of mine FINALLY decided to go to the doctor. Basically his wife had to promise he wasn't seeing her side of the bed until he did so. Bottom line, he was lethargic, no energy, but the worst piece was bruising at the least amount of contact. Within 48 hours he was diagnosed with Acute Myeloid Leukemia, admitted to hospital and started on chemotherapy.

It's not so much that he found out he was sick - it's that it took him so long to go to the doctor to find this out. Get an annual physical - get it every year (for those who's English, albeit their primary language, don't really get that last point - 'annual' means every year!) For the next 10 callers that prove they've had their physical this year I will send you a Tootsie Pop!

On a serious note - I was lucky in that I was able to diagnose my disease prior to it having any serious impact on my body. And all because I finally went to the doctor (I had actually missed a year). It's a pain in the ass (especially the prostate test for those of you old enough) but worth it in the end (how's that for a pun!) I know my friend will kick his disease just like I know he will tell his wife, when it's through, that he can get at least one more season in at hooker (and i'll be his number 8 any day of the week!)

Cycle3 starts tomorrow - should have results and numbers coming after tomorrow's doctor visit. Till then GO TO THE DOCTOR!

End of Cycle2

2009-12-08T07:08:00.001-05:00

I've arrived at the end of my second cycle of chemo and, without official medical opinion, my numbers look great. Red blood cell production (red count, hemoglobin, hematocrit) are all moving up from thenlow range into the normal range. They aren't there yet but they are all higher than they have been in quite awhile. White cell counts are still low but I hit 8 and change this past week where the numbers have been 4-5 for the last six months. Where white cells are the antibodies used to help your immune system my disease has one anti body going crazy and the rest have been somewhat suppressed (again, my non-medical opinion). This number moving into normal is good.
Total protein has dripped to 6.9 which is the low end of normal. Any lower and my protein levels would be "low". It was this marker (at 9.2) that originally pinpointed the fact there was an issue. This number dropping so low is a great sign. Globulin is also an indicator for the IGA number. Globulin hit 3 on the last visit where it was between 6-8 over the past six months. Next Friday I will start Cycle3 and will have full blood work done. Last IGA count was 1700 (down from 4200) so I'm not sure what to expect but
I'm hoping to be in the low 1,000 range. I'm really unsure what I should expect. The high end of normal is around 400 so that's the target.
The only issue I faced on this cycle was hot palms. Really hot palms! I had some acid reflux issues and they recommended I use Zantac. Immediately after that I found my palms burning up. I stopped the Zantac and the palms continued. I'm being told it's a reaction to the dex (steroid). The one thing you can look forward to as the dex/velcad wear off is a departure of the constipation! Time for a big steak dinner with broccoli!!!

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Working in a vacuum!

2009-11-29T15:37:00.002-05:00

Imagine yourself on an deserted island. Your only means of communication is paper, ink from some red berry and a collection of empty bottles. You keep writing things, putting them in the bottle and setting them out to sea. The only issue is you never get any bottles back!

If you have a comment click and add it below - send me back a couple of bottles!

And we are thankful?

2009-11-27T09:15:00.000-05:00

Ahh the holiday traditions - the three F's: Friends, Family and Food. With thanksgiving now behind us we reflect upon the wonderful day we enjoyed. The prep time the evenings before, for both food and cleaning. The arguments the morning of for what clothes the kids should wear (and what clothes they DIDNT want to wear). But all in all a most enjoyable day and, compared to years prior, almost stress free. For those of you reading this blog as a tourist (aka you don't have MM) this will be a nice read. For those of you reading this blog as a local (aka you have MM and may be going through with RVD now) this an important post so please pay attention.
Let's go through the lineup. The day started with a massive selection of cheeses and prosciutto/spinach quiches. The Danish Bleu was my fave with just the correct amount of pungent bite to go well with the dried figs. The quiches are always a winner and this year was no different. There was, of course, a selection of crackers and breadsticks to complement the cheeses. Once the turkey was out of the oven we could warmup the rest of dinner, which was plentiful. We had spaghetti squash lasagna (a recipe from the Italian Beauty Giada) that was almost decadent in it's sweetness. You would never expect squash to be sweet like this but it could have been a dessert and put the sweet potato casserole to shame in the sweet department. Sweet potato casserole (since I already mentioned it) was also a winner. I was afraid it wouldn't be the same style as I was used to having most of my life: brown sugar, nutmeg, cinnamon, marshmallows. You can't have turkey day without it. Mashed potatoes - a must have for any thanksgiving but I have to say they paled to everything else that was offered. However, when paired with the gravy they were superb! The stuffing was mom's normal recipe - a mouth watering mix of bread crumbs, celery, carrots, stock and Bell's poultry seasoning. I believe it needed a bit more time in the oven to crisp up as it was a bit soft but still had great taste. The corn muffins (or as the kids referred to them "cupcakes") were a big hit for the kids, I unfortunately was unable to sample and hence can't provide an honest review. The cranberry sauce was grand as usual, regal in color with a tartness to pucker your mouth but a sweetness to offset the tart and help provide a great complement to the meal. And the other regal-in-color food was the beet salad - I'm a huge fan of beets and this mixture of baby beets with goat cheese was an absolute winner. Last in the sides department was the Brussel sprouts with bacon. I'm sure there were other components to this dish but, like beets, i'm a huge fan of Brussels sprouts and as they say on Iron Chef, "bacon with anything is good!"
The turkey, using the Italian Beauty's Herbs de Provence recipe, was again phenomenal. We brined the turkey two nights prior and dressed the turkey the evening before. The fresh herbs and citrus flavors (as opposed to more traditional stuffing) coupled with the brining process makes for an extremely moist and delectable bird. In addition to all this there was wine aplenty to help lubricate both the food and the conversation.
All of this lead to the inevitable conclusion - dessert! There was a pumpkin pie that made my hair stand up it was so good. The apple pie, almost like an apple crumble in pie form was great with no dry crusts! The brownies were dry and crunchy on top but moist and fudgy within. Of course there was RediWhip to complement it all and coffee to round out the night.
Aside from the muffins, I believe I successfully sampled every item on the menu. Unfortunately I could only fit one helping; a single plate (albeit heaping) of food. I don't believe I could have fit even one "wahfer-thin" dinner mint. My stomach was full to the brim, it was maxed out, stretched to the limit - full!

Another successful holiday to be thankful for - or was it...

HAVE I MENTIONED THAT A SIDE EFFECT OF VELCADE IS CONSTIPATION?

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Puberty - again?!?

2009-11-24T08:56:00.001-05:00

Today is the second treatment day in cycle2. Like cycle1, I am experiencing a reaction to the revlimid - at least this time I was prepared for it. On Sunday I felt it coming on and took a zyrtec to fight the itch before it came. I never got the itch like last time but I'm definitely having the reaction.
Where my gut, back and legs all feel 45 years old, my forehead looks like I'm 15! Across my entire forehead is an acne style breakout caused by my reaction to the revlimid. To add superhero status to this, I have two, almost glowing, red marks on the inside of my eye socket giving me a very otherworldly look as if I could leap talk buildings (of course the suit kills the look but I'll work on that.) My ears are also flaming red on the top and behind in reaction to the rev.
But I'll take puberty anytime if it's going to get rid of this mess inside of me. At least I don't have to worry about any Jr High dances or asking girls out!
I'm getting treatment as we speak and just got this morning's labs back.
- blood basics are the same although my hemoglobin count is increasing (which is good)
- for the first time my "page1" of the labs has NOTHING "out of range"!
- globulin dropped to 3.7
- total protein at 7.7
- calcium at 8.7
All normal!
On that note, I'll close for the day with this thought: be thankful for all you have, be helpful with all you can - just always make sure you're having fun and have a pint for me! I hope everyone has a happy Thanksgiving!

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Sleep is NOT over rated

2009-11-21T11:22:00.001-05:00

I began cycle 2 yesterday. This means I got my dosage of dex, velcade, and revlimid. I also got my monthly dosage of zometa. (I did not get my flu shot as they hadn't gotten their shipment as of yday) Now granted, I did go out for Malaysian food (and 2 beers) but stopped for gelato and coffee afterwards. The coffee may not have helped do anything but assist in kicking the Dex (steroid) into high gear. In other words i was in bed last night reading, tossing but I'm working on basically no sleep and a huge schedule ahead of me today.
715 haircut
8 (more like 830) skating
11 swimming
1230 Taekwondo
2 playdate
5 dinner/playdate

Luckily I may be able to sneak in a nap during the 2p playdate. But right now I'm updating my blog so that I won't fall asleep at swimming! Need more coffee!

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The Other White Meat

2009-11-19T19:32:00.001-05:00

I lived through SARS and was more scared of alcohol poisoning than I was the bogus issue that arose over there at the time. I won't complain as all the wives and kids went home leaving us poor, defenseless chaps to protect the bars! So swine flu catches me a bit tongue in cheek and I've not really considered it a big concern. And now it's being made into one for me.

My son got his H1N1 vaccination today (god forbid we offend Arnold and the pork industry). There are two types: the shot and the intranasal application. The intranasal is a 'live' virus (where the shot is dead). This makes it more dangerous for someone who has a compromised immune system. At this time, that's me!

So at this moment I'm sitting at Molly's enjoying a Guinness while waiting for my wife to take the kids home from my parents apartment as I'm being quarantined from my son for the next day. Tomorrow I should get my own H1N1 shot and be well prepared to fight that live, porker virus!

Until then, I asked for a pint of Guinness and a pint of water. The barman misunderstood and provided me one Guinness and one Murphys so I will be conducting a taste test as I await my order of pork chops w/ pork rind chips! I'll beat the swine at their own game!

...I think it's good!

2009-11-17T21:22:00.003-05:00

This week I'm in my "one-week off" mode until Friday. Last Friday I went in for my checkup to confirm how the first two weeks of RVD have impacted my system. I'm not an expert (but I did sleep in a Holiday Inn Express last night) but I have developed a bit of a background on what means what and I've been tracking bloodwork and numbers in a spreadsheet since September last year. And I have to say the results have been quite amazing to me! Here's the breakdown of everything.

Basic blood counts have stayed what they've been in recent months.

- WBC counts are in normal range

- RBC counts are low averaging around 3.4 (should be 4.16>5.72)

- Hemoglobin and Hematocrit are also low 11.4 and 33.5 respectively

(should be 13.5>18 and 38.7>49.9 respectively)

Total Protein was the original indicator that helped me identify the fact that I had Multiple Myeloma. Since September of last year that value has never been less than a 9 (should be 6.9>8.9). As of last Friday my total protein count was 7.9. That's down from 11.9 the previous check (and 11.5 and 10.8 the two times prior.)

Globulin is another factor that is monitored. In Sept '08 it was at 4.0, since then it's been fluctuating in the mid-6's (normal would be between 2.3>4.2). My last three checks were 8, 7.1 and 6.7. As of Friday that number was down to 4.1.

Calcium, which is used to identify the fact that potential bone degeneration is taking place, is another flag. Normal is 8.5>10.5 and my last three visits were 10.8, 10.4 and 9.7. Friday's visit was 8.7 (on the low side of normal).

The type of Multiple Myeloma I have is IGA Lambda. This signifies that the protein antibody that is present and overtaking the marrow is IGA (vs IGG or IGM) and is working in tandem with a "Lambda" Free Light Chain (vs Free Kappa and only appropriate as my fraternity was Lambda Chi Alpha!). The norm for IGA is 70>400 and my lowest count has been 2,900 but my average has been around 3,800. Most recently the numbers were 4116, 4370 and 3951 and that increase was the cause for taking the next step to the RVD regime. The free lambda numbers should be between 6.1>29.7 and most recently were 344, 357 and 379.

As of Friday IGA was 1759 and free Lambda was 69.7.

(THIS IS THE PART WHERE EVERYONE STANDS UP, GOES "WOO HOO" AND DRINKS A BEER!)

So what does this mean - well I had to read one of the Doc's messages twice to realize he actually did say these results were "fantastic". The other doc said this is a good sign. Neither of them is quite as impressed with the results as I am but then again, I'm always impressed with myself ;) Bottom line, the results are good. This Friday begins Cycle2. Before that, I have my regular doctor visit so I'll be able to see what, if any, changes have taken place in my 'week off'. Till then, here's to keeping the numbers low!

As we always prove, it truly is a small world.

2009-11-15T22:18:00.003-05:00

For those that know the family, it's difficult for us to go many places without having some bizarre 'small world' story. So it's no wonder that it happens now.

Saturday night, out with friends at an Indian 'fusion' restaurant (Bombay Talkie). Someone in the booth next to ours gets up and the person next to him has to stand as well. When he stands he turns and we both look at each other an do a double take:

"Hi Doc - how are you? My numbers came back yesterday and they dropped significantly." Idle, brief chit chat ensues, "I'll let you get back to your dinner, great to see you."

Our two friends are wondering a) you're on the West Side of town, how do you know someone and b) doc? I then had to explain that the person sitting directly behind our friends was the same person that extracted a piece of bone marrow slightly larger than a large grain of Basmati rice from my upper ass just last week. You don't expect to see that doctor out at dinner. But when you are part of our family, it becomes common place.

I'll have final numbers tomorrow and will post status after my first cycle of chemo.

Yin 5 - Yang 0

2009-11-11T05:40:00.003-05:00

During my treatment yesterday I asked what I should do about the Zyrtec as I've not had any of the scalp itch but I have been ungodly tired and wasn't sure if that may have something to do with it. They told me I could stop and only use it when I felt the scalp itch coming but I potentially may not need it as the Revlimid reaction is usually only for the first four days. So last night I didn't take the Zyrtec - nor did I get much sleep!
I awoke around 0130 for a potty break. When returned to bed I closed my eyes and rolled alot and around 0245 I started reading my book. Around 0400 I tried to go back to sleep and I was up about 2 min before my 0500 alarm went off. I'm not tired now but expect I'll be a wreck tonight! I wonder if I can use the 'quiet room' at work today!
One day I'll get my yin/yang balance back!

It's now time for the penguin on your Tele to explode!

2009-11-10T20:20:00.006-05:00

For those of you expecting to find a Monty Python blog, my apologies - I have been told my blog is quite funny but I would never endeavour to think it might rank up there with the MP. This blog covers my diagnosis of Multiple Myeloma, the fact that it has prohibited me from playing rugby, drinking incessantly; it has caused me to eat some miserably horrid pacific-seafood concoction and have myself poked/prodded and tested for quite some time now. Having said that, it is time for a bit of comic relief in the blog. So this next bit has absolutely nothing to do with my treatment or diagnosis - it was just something I found funny and appropriate.

First - what is the etiquette in the cancer treatment center? I watched one lady, making her tea at the coffee/tea/water/snack counter in the waiting room spurt creamer across the counter, twice, only to find out she's waiting for an appt that isn't till tomorrow. I watched a second lady try to 'not' be intrusive while she got her tea during the time the other lady was making the mess. I was having coffee and was able to sneak in and trigger the Kuerig (due to my intimate knowledge from my folks house) and get out of the way. Apparently not in time to get out of the way of the spurting creamer. I was holding my jacket, saw the creamer spurt and did a quick lord of the dance back and out of the way. The lady apologized and I pointed at my legs and the floor and said she missed me - she pointed at my jacket and said she didn't! all down the front of my brown suit-coat - at it's 801 (I've not yet started my day!) Contrary to popular belief, the 'roids didn't take over and I was quite nice (my treatment for the roids was starting in 15 min so today probably would have been a different story! :)

Second - compliments of Pat's father - I had just returned from the hospital and this caught me as quite funny!

A sweet grandmother telephoned St. Joseph 's Hospital. She timidly asked, "Is it possible to speak to someone who can tell me how a patient is doing?"
The operator said, "I'll be glad to help, dear. What's the name and room number of the patient?"
The grandmother, in her weak, tremulous voice, said "Norma Findlay, Room 302."
The operator replied, "Let me put you on hold while I check with the nurse's station for that room."
After a few minutes the operator returned to the phone and said, "I have good news. Her nurse just told me that Norma is doing well. Her blood pressure is fine; her blood work just came
back normal and her physician, Dr. Cohen, has scheduled her to be discharged tomorrow."
The grandmother said "Thank you. That's wonderful. I was so worried. God bless you for the good news."
The operator replied, "You're more than welcome. Is Norma your daughter?"
The grandmother said, "No, I'm Norma Findlay in Room 302. No one tells me shit."

0 mph

2009-11-10T06:09:00.002-05:00

The best response to my prior post was "HULK ANGRY, HULK SMASH THINGS!" After all the JerseyBoyz and Goodfellas on Sat Night I was definitely feeling that way (it was the pint of Guinness that finally calmed my nerves!) But as they said in the '70's - what goes up....must come down...HARD!
It's a bizarre, mixed, feeling to have one side feel like you could successfully fight a bunch of out of shape mobsters and the other side know you need a nap (at the same time). I think this is part of what has put my yin and yang out of sorts. I'm sure others will be quick to point out that I've always been imbalanced but I seriously was in bed by 830 on Sunday and around 9 last night - totally without function - just drop dead tired. I'll get two paragraphs in my book before I fall asleep hard (not 'drift' but 'DROP' to sleep!) Could this be the Zyrtec and other things causing this or is it just the Rev - we'll have to ask the docs and nurses. On another note, I've noticed a tingling in my right foot, calf down to ankle so need to confirm that's not caused by the neurapothy. Again, will check w/ the docs - noting here for posterity sake!

90 MPH

2009-11-07T11:18:00.001-05:00

So the Dex is definitely kicking in. Where last weekend I was unable to notice a difference, the last few days it has most definitely been noticeable. My tipping point, or threshold for stupidity has dropped dramatically. If, on a scale of one to ten, with one being the lowest, I would usually trigger an insane rant (or muffled naughty word) at a level of 8. As of yesterday I believe that level has now reduced to .01.
Delivery bikers are my nemesis (I have the light you ignorant $&@&$!). Taxi cabs are a close second. Some clients at work have recently joined those ranks.
But on a serious note, I find myself blowing up more quickly with the kids. I'm trying to closely monitor as part of me is wanting to make sure the kids understand there are boundaries for what they can and cannot do. However, if my level of ptlatience has decreased then I need to make sure I understand that and deal accordingly.
To be clear with everyone I'm noting it here as it's something on my mind that I'm trying to monitor to keep balance. It isn't a problem and I don't need any assistance or advice. As I said at the very beginning, it's my post to rant and rave and if you find it interesting then great. If not, apols and I'll send you the link to Brittany Spears' blog!
That's all for now!

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Today's treatment is brought to you by...

2009-11-06T09:09:00.000-05:00

Nothing exciting today. I did get a little background on the numbers I'm watching for now (vs what I've been monitoring more recently). The concern now is with the WBC counts (antibodies), the hemoglobin/RBC counts (good blood) and platelet counts (clotting ability). I'm tracking these in an iPhone app so I can at least stay aware of where I stand.
I arrived today at 0730 and it's currently 0906 and I've got another 20 minutes or so left on the IV. So my thinking I can be in and out of here by 9 was a bit off.

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Day 2 of Treatment

2009-11-04T09:26:00.002-05:00

For those of you that have played online shooter games with my brother, you know what it's like walking around, KNOWING you're about to be nailed but not knowing when. You hope you get a chance to get him but you also know there's no way in h*ll that's working out. So the day after treatment 2 I'm walking around waiting for my brother to ping me with a clean head-shot just when I think I'm doing pretty well. After the first day of treatment, expecting one thing and getting another, I'm walking on the proverbial tight rope wondering what will happen today or the next day.

I slept well last night - didn't really feel like getting up. I no longer have this acne rash across my forehead like that girl from the Star Trek DS-9 or Voyager series (at least it's not as pronounced). I do however, feel a bit speedy and a bit dizzy. I'm working from home to be cautious and will try to get a nap if possible.

One other reaction not mentioned in last nights post was a rash, on my lower spine, about 8 inches in length. I hadn't felt it and it wasn't itching (that was the head). So the Doc recommended Lotrimin for the rash and asked that I monitor. For those not in the US, I'm not sure if you'll recognize Lotrimin or it's intended use. It's for jock itch - better defined as fungus around the 'package' that causes itching - usually acquired by those with an impetus for sport but not cleanliness (see prior post for reference to cleanliness, godliness and timeliness!). Now where I am so inclined to sport (and killing me not being able to play rugby) I am also so inclined to make sure that 'area' is clean and dry! I have NEVER had jock itch.

So if you come to visit and happen to be rummaging through my medicine cabinet, the Lotrimin is for my BACK, not my PACKAGE!

I'll keep everyone in the loop as things progress - be sure to stay tuned to my next "live" broadcast which I'll try to do Friday morning (it will most likely be very boring so have some coffee if just getting up or a beer (one for me) if you're just getting home from work.

The Early Bird

2009-11-03T17:25:00.000-05:00

"The early bird gets the worm" is a truism worth noting and remembering. For my second day of treatment my schedule was as follows:
- 11:00 skeletal study (xrays)
- 14:00 labs
- 14:30 bone marrow biopsy
- 16:30 treatment

It's now 17:35 and I'm sitting in a room awaiting a nurse to come in and plug me in for my chemotherapy. I'm going to post this now so for those of you who got TaiTai's email on how to setup the RSS feed you can almost experience this realtime!

When I arrived this morning the radiology group was rip roaring and ready to go. My appointment started promptly at 1100 and I was done within 20 minutes. My next appt wasn't till 1400 so I had my labs drawn early, now I didn't need to be back till 1430.
I ventured around Union Square to keep myself entertained, got a bite to eat and finally decided to head back early. I was a bit over an hour early but surprisingly they put me in a room to see the doctor at about 1410 - I was early! And that's where my luck ran out!
The Doc didn't arrive to do the bone marrow biopsy till 1535, then we needed consent forms -the list of interruptions continued. When we finally got to the point we were all waiting for - my lying flat on a table while he sticks a rather sharp instrument into my pelvis to extract a piece of marrow and fluid - it was just after 1600. The marrow we got without complication but the fluid wa a bit more difficult. He kept having to go in deeper, to no avail. He finally had to "re-position"

**** LIVE UPDATE ****
1807 and the IV has just started. I've been informed that I have an hour of hydration in addition to the chemotherapy. I may get tobtuck the kids in.
****************
so repositioning means he has to take another jab - and this time he finds his mark! It's tough to describe the biopsy. You know where your skin is and even with anesthetics, you can feel when someone is under your skin - they're just not supposed to be there. And the "pop" that goes along with the removal of the marrow is just enough to grate your nerves. But the removal of the fluid is like a thousand nails on a chalkboard while liquid fire is shot down your nerve endings. The pain is numbed but you know it should be hurting!
Here's a quick pic of the bone marrow biopsy tool kit. I meant to get an after shot (blood everywhere, 3 stained slides, container with marrow) but I forgot.

The round container with the white lid is where my marrow ended up. I have no idea what everything else was being used for (and can't see it on this screen)

WAIT - U CAN ORDER FOOD?
one of the orderlies just came by asking who ordered the Pad Thai. I was so taken aback I just said no. I should have said yea as I've no clue when I'm getting out of here! Remember my comment about the chair vs the room? Well I'm in a room again today as the chairs are all full. Here's the IV tool kit (is anyone bored with my pic and play by play?)

And here's my IV that had to be done twice as she missed my vein the first time!

Notice the band aid at the top. That's the first stick. The iv is now in the vein at the bottom left of the wrist. I'm signing off for now but if anything else funny happens I'll add to the post.
- Posted using BlogPress from my iPhone

Son of an Itch!

2009-11-03T08:55:00.006-05:00

If you've not read the previous post, please do as I wouldn't want you to get out of order and not understand the situation, as it stands, at this moment. Timeliness is everything (and right up there with the fabled cleanliness and godliness!) Which is why I'm posting about my first day of treatment (prior post) and the reactions I had to the treatment (this post) on the same day. Timely, eh? The potential reactions I mentioned before was the list of items for which I was forewarned. Here's what I took out of Friday's meeting (and worried over the entire weekend).

Revlimid will make you drowsy, take it at night. RBC/WBC counts may drop, you can't do anything about it till you know the counts which means next visit, so don't worry about it now. Velcade will make you constipated - focus on spinach, broccolli and those other 'moving' veg. Dex will knock your socks off, make you really speedy, you'll be looking for things to do, kick the cat (they actually said that), etc. Expect to be wired Sat thru Sun and crash hard on Monday. Do the Velcade and Dex in the morning

I FELT COMPLETELY NORMAL - I NOTICED NOTHING - AT ALL

Until Sunday around 4pm.

I took my daughter to her swimming class on Sunday. It was my first adventure actually in the pool at the 14th street Y. Afterwards we went for Ramen across the street - really good, Japanese style Ramen - Mia Loved it. We then went to the playground and I noticed my head and my rectal area (I couldn't just say butt) both itched. Yes, itched.

First thing through my head, "oh my god - my kids swim in that pool every week!" Second thing through my head, "i can't have been allergic to the Ramen - I'm not really allergic to anything". When I got home I took a shower to be safe and didn't notice much of a change. But it wasn't till 33o in the morning when I woke up scratching like an old blood hound with the mange. I couldn't stop - it was killing me! I had a glass of milk and went back to bed. I tried to get up and work out but that wasn't working for me. I went to work and was fine (again, no crash) but if I just touched my head it turned into a 5 minute scratch-fest complete with bouncing leg (if you hit my ear just right!)

A frantic message to DFCI informed me that this is the Revlimid - nothing to be worried about. A later message from a DFCI RN told me I could take Benadryl, 25-50mg - which put me out, like a light, in the third inning of the game (which is probably a good thing). I took another 25mg at 2am and at this moment I'm hoping SVCCC has something more for me when I arrive there today as this itch is driving me crazy!

So my biggest reaction to the treatment? It's a son of an Itch!