Monday, April 27, 2009

Discharged and happy about it...but not as exhilarated as I thought I'd be...

First, sorry to be AWOL here but after my appointment on Thursday, they gave me a few days off so I took advantage of it by doing absolutely nothing other than watching the NFL Draft and about 30 episodes of Battlestar Galactica, which had been highly recommended by a couple of people. It's not without it's flaws, but it's a decent enough potboiler and a good way to pass a lot of time while fatigued and when lying down on a couch for 8 hours a day is the best pastime one can think of.

I went to the ol' seventh floor this morning and had labs done. White count is around 3.6, which is enough to get on an airplane so long as I don't have 15 Swine Flu cases sitting around me. Hemoglobin climbed to 9.1 which is still quite low but it's going in the right direction. Platelets are at 79, again low, but rebounding. Good thing, too, as my resilient beard and moustache have been coming in and I've been afraid to shave. For the last five days I've had this incredibly creepy growth that looks like a 7th grader trying to impress somebody with a wannabe goatee*, and one sideburn consisting of about 20 half-inch long hairs. This morning I finally broke down and shaved -- ever so carefully so as to avoid bleeding that wouldn't stop very easily. Not a drop was spilled, I'm happy to say.

On the hair front, it is worth noting that other than the top of my head, I've not really lost any. I may have mentioned this before, but I'm grateful that I didn't lose my eyebrows (what little ones I have) or eyelashes. I really wanted to avoid that undeniably disturbing Bob-Geldof-In-The-Wall look, and was fortunate to be successful.

And as usual, my potassium was low. As I type this, I've got one balloon infuser of 250ml of some kinda Potassium juice going into my line, and I've got another one that I will swap this out for in a couple more hours. These electrolytes are needed to provide the raw materials for rebuilding blood cells, so take them I shall. Plus, I guess, eat lots of potatoes and drink lots of orange juice. Bananas, evidently, are a red herring -- not even in the top 30 foods for potassium. In fact it's possible that a red Herring might actually have more potassium than a banana. Somebody at the Banana Grower's Association must have incriminating photos of the head of the Potassium Support Foundation or whomever is involved with Banana/Potassium PR efforts.

So I met with BB today, who was quite pleased with my progress and discharged me (hurray!) to go back to LA tomorrow for about 2 and a half weeks. Part of my desire in keeping it short was to avoid "bridging therapy" which is another course of Thalidomide and Dexamethasone (more on this below). I may discuss extending my furlough by another few days, then, to catch Parker's little concert that she gives at her school on May 21st. Right now I'm scheduled to return here on the 16th but if I've gotta take the damn Thalidomide and Dex anyway, what's another week? We'll see. Part of the issue is I want to get all this treatment over and done with as soon as I can, and there will be several days of more tests prior to the second transplant, so if I don't come back until the 22nd, it might be the 30th before I start the second transplant. I can probably shave 7-10 days off that if I try hard.

I also need to take care of the CVL (central venous catheter i.e. tubes that come out of my neck) to ensure it don't get infected. This is fairly easy to do, but normally, for extended trips, they remove these. Removal, as I have likely written elsewhere, consists basically of telling you to hold your breath while they yank the six inch metal wire out of your carotid artery without so much as a hearty handshake, much less any sedation/local anesthesia. This does not sound like a barrel of laughs. Moreover, as the procedure itself takes about four seconds, I can't even justify having them knock me out for it. The thing reminds me of tying a string to a loose tooth with the other end on a doorknob and then slamming the door. This, of course, would be followed up by the inevitable re-insertion of the line when I return, and that is something that I would want sedation for (as everyplace in the world except here does it under sedation). So by keeping the thing in, I can avoid two unpleasant procedures. Sounds like a win to me. BB chuckled at me a little but then he's not the one going through it. We also bonded briefly over a dislike of taking turboprop planes, which is about 90% of the air traffic in and out of the bustling Little Rock National Airport. So he is not impervious to phobias!

BB then narrated his notes to Dr. SF, and described me as "at this time, in very good partial remission at least" (meaning I could be headed for complete remission). I knew this was the case, but hearing him dictate it was very nice. I am a little troubled by my modestly elevated liver enzymes, which were caused by antifungal meds that I've not been on in two weeks -- and I haven't had more than three or four glasses of wine/beer in the last two weeks so it's not that. BB offered his opinion that I might need to drink more! :) We'll watch these although they were very low during the month of March so I'm not sure what is going on.

I was in high spirits until they came in and started talking about bridging therapy. I was really hoping to be off pills for a couple of weeks -- especially off poison. Bridging therapy is used between transplants to ensure the cancer doesn't creep back. The time between transplants is 6 weeks to 6 months, and since BB had previously said "don't worry about bridging therapy" to me an Jill, we assumed I would need it. Certainly if I'm only going to be gone two and a half weeks, I wouldn't need it, right? Turns out: wrong. And it's extensive. Thalidomide DAILY (albeit in a reduced dose of 100mg) for the entire time I am gone. On the plus side, I guess this oughta kill the hell out of whatever cancer is left (I will also be on dex in reduced dose for four days). But between constipation and more importantly neuropathy, I really didn't want to be on Thalidomide for an extended period of time. Hopefully I won't develop anything. But this does mean that now, in addition to these pills and Levaquin and Acyclovir, I've also got to bring all my damn stool softeners and a least one anti-nausea tablet/sleeping aid plus the Metanex B6/B12 pill and the Cymbalta both for the neuropathy. I'm back to a pill breakfast and will probably be stopped at the airport to account for the thirty bottles of prescription meds I'm bringing with me. Sigh. Oh well. Better to have the pill breakfast back in LA than here.

I will also be making weekly trips to a lab out there to get blood work done. Hopefully they can draw from the Cook catheter because otherwise I am looking at those lovely 30-tube draws I love so much. Note to self: check with SH's office and make sure they do this.

Ugh. I really, really hate this stupid disease.

When I return, I'll go through three days of re-staging testing. As we speak, I am once again demanding IV sedation for the bone marrow, and I am arguing against a gene array analysis because we've reached the stage where this isn't being used for my own therapy but is being thrown in the ol' database for posterity's sake. That would be good and fine for a urine sample but I don't feel like approving another course of mining for ore deep in my hip (deeper than a regular bone marrow). I used to be quite proud of my backside and now not only has it lost all its muscle tone from the dex, I've got four dime-sized black circles from previous bone marrows and gene arrays that have been there for weeks and are going noplace. They're awful, and I don't want any more of them.

Oh well.

Putting a positive spin on all this, I'll be taking so much poison over the next few weeks that my Myeloma might even be completely gone before I get back -- at a minimum I expect the M-spike to fall even further. So...there it is.

Okay folks, as always, thanks for your support, emails, comments, prayers, positive vibes, and everything else. I will write during my furlough, but probably not daily, so don't be concerned if you don't hear that regularly from me until the middle of next month. I'm off to convince Bonnie the nurse that I don't need a gene array -- or rather, I'm off the have her convince me otherwise. :)

P.S. Bonnie told me to say no to the gene array. That clinches it!


*I note that what is commonly called a goatee is actually a Van Dyke (no relation). The goatee is only the tuft on the chin, whereas the Van Dyke has the noble wraparound moustache thing going on.


  1. Hooray! You get to go home!! No problem about taking the pills at home. As we have found, you will be taking pills for the rest of your life. You will feel and be so much better at home. I hope you enjoy every minute of it, as I know your family and friends will! Great fight so far - relish the break! Safe travels!

  2. Awesome, Nick. Westward ho! I'm so glad you finally get to see Parker and Carson after all this time. I'd bet missing them was the hardest thing of all. Have a beautiful time with your family at HOME!

  3. Wow that is a lot of stuff ... treatment sucks ...

    All the best to you,

  4. You're doing great Nick. Thanks for keeping us all up to date on the Arkansas protocol. When you eventually get around to having your catheter taken out, the procedure is much more tolerable than it sounds.

  5. A turboprop plane?!! Didn't the magnificent OZ tell you that you just have to click your ruby slippers
    together 3 times and say "there's no place like home." Have a great time!!!