Friday, September 9, 2011

Dana Farber Study on MM Cancer Inhibitor

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

Wednesday, July 6, 2011

Breast Cancer

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

Monday, July 4, 2011

Vacation, Retraction And Assistance Desired

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

Sunday, May 22, 2011

Life Of A Blog Writer and His Family

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

Wednesday, April 13, 2011

The Maintenance Continues - All Is Well!

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. 

Sunday, January 16, 2011

Ode to a Jets Fan (my wife)

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!

Friday, January 14, 2011

What goes around, comes around, again and again!

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!

Tuesday, January 4, 2011

Hotel Review

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