Saturday, February 6, 2010

The Whole Story

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!

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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Friday, February 5, 2010

You don't believe me?


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

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!

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!

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....

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!

Saturday, January 30, 2010

Pschyo-so-what?!?

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!


Friday, January 29, 2010

All is good so far!

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!

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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Tuesday, January 12, 2010

Details, details....

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!


Saturday, January 2, 2010

Well Ollie, what should we do next?

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!

Thursday, December 31, 2009

Coming Soon!

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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Tuesday, December 15, 2009

Need O+ if you can help!

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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Friday, December 11, 2009

Hot off the presses

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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Thursday, December 10, 2009

Let's Reiterate - Get a Check Up!

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!

Tuesday, December 8, 2009

End of Cycle2

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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Sunday, November 29, 2009

Working in a vacuum!

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!

Friday, November 27, 2009

And we are thankful?

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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Tuesday, November 24, 2009

Puberty - again?!?

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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Saturday, November 21, 2009

Sleep is NOT over rated

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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Thursday, November 19, 2009

The Other White Meat

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!

Tuesday, November 17, 2009

...I think it's good!

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!

Sunday, November 15, 2009

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

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.

Wednesday, November 11, 2009

Yin 5 - Yang 0

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!

Tuesday, November 10, 2009

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

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

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!

Saturday, November 7, 2009

90 MPH

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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Friday, November 6, 2009

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

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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Wednesday, November 4, 2009

Day 2 of Treatment

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.

Tuesday, November 3, 2009

The Early Bird

"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.
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Son of an Itch!

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!

Sunday, November 1, 2009

1st Day of Treatment: Part Deux

It's just about 30 minutes to hop the bus to the subway for a transfer to get over to SVCCC - which is why, when I guesstimated 20 minutes for the expedition, I was about 5 minutes late. I guess being tardy for your first day of treatment isn't on-par with expectations -- duly noted. And to quell any fears, I did receive my comeuppance.

First - The treatment area has reclining chairs, personal TVs and all the necessary accoutrement's to make this part of your experience as enjoyable as possible. The nurse asked if this was my first time receiving this treatment to which I virginally replied, "yes". To which she responded, "I'm going to put you in a room." My immediate response, again, virginally, was, "that's OK, I'm fine with the chair." And her rapid response was, "that's OK, I'm still going to put you in a room,"
Me: (wondering about my virginal situation)"why the room?"
Nurse: "I have oxygen and everything else I need in that room"
Me: "uhmm, excuse me?"
Nurse: "don't worry, we hardly ever need that stuff"

And in 15 minutes I was on a bed, with an IV in my arm awaiting the loss of my chemo-virginity.

The god of chastity belts reared his head in the form of Mrs Hannibal (yes, Hannibal) who informed me my insurance company had not yet agreed to pay for the chemo treatments so they regretfully inform me they may not be able to provide my treatment today. One frantic phone call revealed there was no pending approvals or rejections at the insurance company. Apparently my age and the chemo didn't go together so, internally, there was some confusion at SVCCC but bottom line it was cleared up and I was no longer a chemo-virgin!

The drugs (which I've outlined previously) and their warnings - life is a bowl of disclaimers!
Revlimid - nausea, tiredness, drop in RBC/WBC counts when the treatment starts.
- take this orally for 14 days and then skip for seven days.
Velcade - nausea, dizziness, constipation
- take this, via IV, twice a week for two weeks, then skip for seven days.
Dexamethazone (Decadon) - steroid - RUN FAST, WORK HARD, STRONG LIKE BULL! I was warned that I better have something to do on Saturday as I'm going to be extremely 'speedy' on Sat and Sun and then will crash hard on Monday. I was warned to tell everyone, it's the drugs, not me. Where I may have never before kicked the cat, I may actually kick the cat (mood swings could be fierce on steroids).
- take this, via IV, in conjunction w/ the Velcade.

More on actual reactions later.

Saturday, October 31, 2009

This is only a test

Trying to see if I can upload text and photo from the iPhone (yes, they have an app for that!)



- Posted using BlogPress from my iPhone

First Day of Treatment

Today was the first day of treatment - I'll write in more detail later, for now, realize that my posting to my blog at 0130 doesn't mean the Dex has really kicked in - contrary - we are hosting a Halloween party tomorrow night so I have been up making 3 trays of Risotto (and will have to cook the meat tomorrow). I don't feel any different and feel like I can crash w/o problem.

But I'll post more detail about today's fun events later! Just wanted a place holder for this first day.

Monday, October 19, 2009

...3 months later...

So in a book, or in a film, there's that moment in time when the writer/director realizes that if they really included that uneccessary time period between plot points it would take away from the overall effect of the movie. It would be boring, uneventful, useless patter signifying nothing (ok - went off on a bit of a Shakespeare tangent there). The events during that time period were of no consequence to the overall, bigger picture. Hence, I was busy (as h*ll), it was summer (we played) and the kids are growing (to be a pain in the...)

...3 MONTHS LATER...

There truly hasn't been anything of consequence in the recent months. I've been taking the sushi, acting as a pin cushion and donating my circulatory fluids to tests and more tests. The sushi surprize is having no effect on me - it's not making me sick and it's not making me better. My numbers have been floating up and down but unfortunately, the numbers of biggest consequence have not been going in the right direction.

The type of Myeloma that I have is IGA Lambda. My IGA numbers, which should be 70-400, are averaging in the high 3,000's. My Lambda numbers which should be 6.1-29.7 are averaging in the 350 range. I hit the IGA 4,000 mark last visit and we decided to watch closely on this visit. Even though I hit 3,800 my total protein count (act: 11.9, range: 6.9-8.9) and calcium counts were both high so we are moving forward with the RVD regimen and getting off the sushi.

Su-Su-Sushi, Goodbye.... This evening's return did not find me loaded up with 112 caplets of foul smelling, regurgitated ocean life. I will be receiving a prescription of Revlamid and will begin my dosing in approximately 3 weeks. The dosing will be 2 weeks on, 1 week off, which will comprise one cycle. The Revlamid is taken orally for 14 days on, 7 days off. The Velcade and Dexomethazone is taken every three days (2x per week). The Velcade is taken via an IV (30 min in a chair) and the Dex can be done either via IV or orally. This is done for one week on, two weeks off .

This continues for 4-6 cycles or till my numbers reach a point where we can begin harvesting. The optimum result is the therapy causes my numbers to reduce down to normal, and, if lucky, potentially negate the need for a transplant (at this time). Otherwise, we will continue till my numbers reduce as much as they can (and reach some type of plateau.) At that point we'll harvest and look at doing the transplant.

While this may seem to be more serious in nature, I guess, it really is and has a proven track record at reducing the aspects of my disease that are most troublesome. Revlamid and Velcade are both attacking the cancer and problem antibodies. Rev is a derivative of Thalidomide (see previous posts for more detail). The Dex is there as a steroid to help boost energy, etc. I'm also being given something else (the name escapes me) to prevent shingles. The biggest issue I need to worry about is neuropathy (tingling/loss of feeling in toes/fingers).

So nothing more to report at this point. I'll do my best to keep the time between plot points more interesting!

Sunday, September 20, 2009

Ok - work/kids/vacation = busy! promise to post something soon but everything's good (just way too busy!)

Monday, July 27, 2009

Tracking Data

For anyone interested, I've created an Excel spreadsheet to help track my bloodwork based upon the reports I get from SVCCC on each visit. I'm happy to share this with anyone interested. The data entry is based upon the reports I get from SVCCC but the basic data remains the same. I'm not a developer so you'll have to bear with the fact this is a very rudimentary spreadsheet/database to track your numbers. The entry form copies/pastes the data into a data worksheet and has conditional formatting to identify hi/low data (based on the reference range used by SVCCC). I've pre-built charts for IGA/Lambda, RBC/HCT, AST, and TotProtein/Calcium levels. The charts can be easily changed and updated with a basic knowledge of excel.

I'm happy to help anyone that needs it in setting up the sheet for themselves. The Myeloma Manager essentially does this but doesn't have the flexibility of charting that can be done in excel. Also, the Myeloma Manager is not available on a Mac. I'm hoping that someone can get this to work on a Mac as well. Please pass along my bloglink to anyone you think may be interested in this. The data is going to be primarily relevant to someone w/ MultMyeloma but any blood cancer could adapt this to their use.

My goal would be to take this kind of piece and make it into something that can be updated and placed on an iPhone app (see last post!) Any SDK types that want to play around let me know. I don't have a Mac so I can't develop it (but happy to try if anyone wants to give me a Mac!)

Thanks all - more info in the next week or so after today's 3 month check up.

Sunday, July 26, 2009

Track Your Numbers

Most of you watching my blog are friends/rels/etc. and for that I am greatly appreciative. For those of you that actually have this disease and are just looking for my inane comments, then hats off to you! And this post might be helpful. I just found an app for my iPhone called myCheckUp which allows you to track information and then chart that information over time. If you're on a diet, tracking sugar levels, etc this is very helpful as it tracks values intra-day (multiple data points w/in a day's time). For those of us tracking reports weekly/monthly it's not as friendly but it's a good start, having something that is handy to keep track of the specific numbers of concern to you. I've sent the developers an email w/ comments to see if we can get them to focus on a few items: option for multi-day view/data entry, ability to maintain ranges to identify hi/low values, ability to include more than four custom fields (or increase the number of base markers they maintain) and, finally, the ability to import data or enter from a computer (and not have to enter everything on the iPhone.)

I'm not touting the iPhone (ok, i'm a HUGE buyer of the iPhone) but this kind of mobile ability to maintain data (when visiting another doctor, etc.) is key. For those w/ an iPhone that are interested you should be able to link to the app here:
http://www.vidaone.com/mcu_iphone.htm

I hope you find this useful and am happy to offer any assistance to anyone looking to bring in this data. The Myeloma Manager (thank's for the reference Dad) has been great, albeit a little clunky. Bottom line it gets the job done but is stuck on the PC and can't be mobile. This app opens another door (unfortunately only a crack as it's limited in what it can do but hopefully my powers of persuasion will convince them to do this!) If anyone is a developer for iphone apps and would like to work together on doing something I'm all ears!

More later - thanks for listening.

Saturday, July 18, 2009

Can you say, "Hit By A Truck?"

On 15 July I started Zometa. Zometa is a bone strengthener. As I've explained previously (but will indubiously outline again here) Myeloma takes over the bone marrow and, when active, actually starts eating the bone itself, along with doing other really nasty things that you'll have to go back to a previous post to understand. BOTTOM LINE, WITH ME, - IT'S STILL ASYMPTOMATIC, OR NOT ACTIVE (that part put in for my wonderful, worrying mother).

Where the Docs can help control other issues brought on by the disease chemically, SHOULD something happen w/ my bones there's no real no fix. So the Zometa is used to strengthen my bones and to help avoid any issues that may occur. You'll all be happy to know that Zometa is also used for Osteoporosis (insert "you're getting old" joke here). Zometa is given intraveneously and I was warned that I will feel side effects in the first session, less so in the second and in the third I probably wouldn't notice. So the first thing they told me was expect to be feverish w/ flu like symptoms for the first 24-48 hours. They didn't tell me it would feel like I just got hit by a truck!


I was told to hydrate that night of so I plowed through 3 liters of H2O before bed. I woke up, felt fine, did my situps/pushups and went to work. By noon it hit me. My back and shoulders were killing me like I'd played rugby that weekend and had been stuck at second row! And yes, Pat, like my ususal out of shape performance, "too winded to run"-rugby. But I must have made a few tackles as my shoulders were killing me! So I got all the pain with none of the game - miserable.

As far as numbers are concerned, I'm continuing to be anemic where my RBC and HGB counts are lower. This is normal as the bone marrow creates the red blood cells and hemoglobin and I've got this rogue protein that's taking over my marrow. So, being anemic would cause certain issues: fatigue, problems w/ bleeding, etc. I've got none of these - well, correction, I'm at work by 8, getting home just before 7 and have a 5 and 2 year old. I am fatigued - but I don't believe I'm any more so than what you would expect in that situation! So, in short, I'm not feeling any of what they say I should be feeling - so that's good.

That's it for now - any questions? Post a comment (and the sushi is still foul, the worst is when you're slurping it and some of the melted ice drips down your chin and onto your dress shirt, "daddy, you smell stinky!"