Thursday, December 31, 2009

Happy New Year's Eve

I'm dashing to prepare what has turned into a seven course meal (five courses for six people plus two additional dishes for one in our party who is allergic to shellfish). What have I gotten myself into!!! :)

So this will be quicker than I'd like.

It's been an extraordinary year. One marked by fear, despair, and pain...but also hope, faith, and love.

I have been so moved to have seen this community of support grow...I've mentioned this before but you each mean a lot to me.

I'm incredibly lucky that I had the time to research the disease, find BB, and put my trust in him.

And I look forward to a new year that begins with no disease, and ends the same way, as I march towards MRI remission and, hopefully, a formal statement of "you're cured, Nick."

I'm assembling some interesting charts on bloodwork that I'm resolving to publish here in the New Year. That's one good resolution that I think I can keep! We'll see what others pop up. But for now, it's time to eat a lot of food, drink a lot of wine, and celebrate the end of our Anno Horribilis.

Tuesday, December 29, 2009

Blood counts...

So I had my weekly infusion appointment. The nice nurse (who is good at accessing the port without pain) informed me she is leaving the office, which is a bummer. I'm sure they have other competent people but I have a good relationship worked out with this woman: she doesn't hurt me, and I don't scream bloody murder. Hopefully that can carry over to whomever is next responsible for me.

One thing that drives me grazy about Dr. GD's office is they won't give me my damn labs. It's MY BLOOD for Pete's sake. I'm entitled to it, and I also know how to interpret it better than anybody there except the doctors. But for example, they didn't have last week's labs in my file yet, because "the doctor hasn't reviewed them." This, I feel, is bullsh*t.

What they DID have was today's bloodwork, which I wasn't crazy about. White count is 3.7, which is getting low. Hemoglobin is 13.4, which is okay but not as high as I'd like. Platelets are at 108, which isn't great since they'll be going down for another two weeks while I"m on Revlimid and they'll probably get well below 100 this time. Plus that RDW marker, which I've come to associate with Myeloma since it was screwy when I had it, is back up to 14.3 -- just a little outside the normal range, which I don't like.

I would have liked to see the immunofixation results to assuage my concerns. But they weren't available. GRRRR....

A note on hair regrowth...

I realize this topic doesn't have the urgency of some past posts, but I'm in a position to post some interesting observations, at least!

* I was told by my original hematologist that hair loss would occur after the high-dose Melphalan administered during the transplants. In reality, my hair loss occured during induction (in fairness to my original oncologist, he didn't anticipate Adriamycin being included in the induction protocol) and I started REGROWING hair during the transplants, particularly on the face. Regular readers may recall my colander-helmet photo taken after the second transplant.

* I was told that it would take about two months before hair started regrowing; this was basically as expected. It took probably another month before I had a decent covering of hair, and two months before I had a full head of hair.

* I was told that hair can grow back in a different texture and different color post-transplant, but that if one's own cells were used, the variability was much less than with other cells. Interestingly, mine did grow back in a different texture (much more fine, initially) and different color (a dusty medium brown rather than dark brown). However, this changed over time, particularly the color. I'm now three months post-commencement of hair regrowth (i.e. five months from the last treatment of!!!!) and my hair is the same color that it was when this whole mess started. Texture, however, is another thing. It isn't as fine as it was, it's a bit richer (not yet how it used to be, but on its way). But I have a patch about two inches square that is very wavy, and I have another patch that grows forward where all around it grows backwards. This makes for hair that doesn't yield to styling. My solution thus far is to keep it quite short...however pulling off that look requires me to lose weight which, given my Dex schedule, is rather challenging. Hopefully I can accomplish something, though! I've had to abandon physical therapy due to the work schedule, but I really need to try to get back there at least once a week, both for weight loss and for maintaining muscle.

* My hair stylist points out that hair cells retain whatever chemicals are in the body for a long time, which makes perfect sense -- we've probably all heard about drug-testing that can be done on a strand of hair that retains literally years of memory. So it's going to take some time for my hair cells to get done regurgitating all the drugs that have been in my system.

So, like I said, not exactly gripping but potentially interesting for somebody about to face their own hair loss situation.

In other news, everything is pretty darn good. I slept poorly last night which is a bad thing since today is a Dex day and that means there could be shakiness ahead. I'm going to continue to follow the suggestion of taking it right before bed this evening.

I'll have a final 2009 post later this week. Hope you are all doing well!

Wednesday, December 23, 2009

Delayed update!

Happy holidays to all of you -- I'm sorry to take so long with this but I am happy to report that I am very busy at work! :)

Quick highlights:

* I got rid of my cold on the 21st day. That's a LONG time to have a cold. Longer than I ever want to have one. I'm looking askance at my bottle of Revlimid right now...but in the grand scheme of things, I'd rather be alive with a cold than dying from cancer, so once again, not much to complain about.

* I am still in complete remission. The visit to Arkansas in four weeks will hopefully indicate improvement in the MRI as that is really the last piece before BB will be relatively confident in saying that I am cured.

* Arkansas just presented its most recent data two weeks ago at the ASH conference in New Orleans. Of those newly-diagnosed patients who reach complete remission, NINETY PERCENT remain in complete remission FIVE YEARS OUT. The plateau in the recurrence curve is reached by then. That means a "cure signature" of about 90% -- pretty remarkable. I'm on the track and will hopefully stay there.

In light of this, it occurs to me that what is most important now is not so much the data coming out of Arkansas -- but the data elsewhere. I do believe Arkansas can cure the majority of newly diagnosed Myeloma patients. The issue is now: what can be accomplished without going through all that? We don't yet fully understand just how powerful Velcade and its derivatives are. Hopefully everyone with this disease will enjoy a very, very long remission!

Happy holidays once again, and I will be posting more in a few days!

Friday, December 11, 2009


Still need to take Ambien on Thursday nights, evidently! Got about four hours of sleep last night...not good. So next week, continuing to perfect the formula: dex before bed on Tuesday, Ambien (or Tylenol PM) on Wed and Thursday nights. Should do the trick!

Still can't shake this damn cold...two weeks today and counting. But it isn't worsening and appears to be on its way out, just taking forever!

Thursday, December 10, 2009

A gold star for Tim's wife!!!!!

So I took the Dex before bed on Tuesday night and slept like a rock -- for about six hours, anyhow. Then I woke up, ready for bear! Made it through Wednesday with high energy, took an Ambien before I went to bed Wednesday night (no Tylenol PM on hand), got another six hours. By far the best I've slept since I've been on Dex in maintenance.

Taking Dex before bed is a winning strategy! Thanks Tim's Wife! :)

Still fighting off this cold...will be two weeks with it tomorrow but it is on the way out. The lingering cough is a real pain, though!

Platelets were below 100 on Tuesday -- 98 to be precise. This required the nurse to check with the doctor before administering the Velcade. She asked me if Arkansas would have a problem administering the Velcade. I told them Arkansas would have a problem NOT administering the Velcade, and would give it to me if my platelets were at EIGHT, much less 98! I checked with Arkansas to see if I should eliminate all the aspirin. I'm on one a day, still. I don't know the connection between deep vein thrombosis, plateles and aspirin, but it seems to me if the aspirin is to thin the blood, the low platelets probably mean I can discontinue it. One less pill would be a good thing!

Monday, December 7, 2009

I'm getting sick and tired of being sick and tired...

Day 11 of this cold, which remains in my chest and sinuses. No real change -- it doesn't get worse, but it doesn't get better. I don't have a fever, there's no sign of infection or anything like that -- but I don't have the immune system needed to clobber it.

I'm getting very tired of coughing all the time. I remember when I had just left the hospital earlier this year, I was literally coughing about 200 times a day. I remember starting to go stir crazy from it. I'm not there, but I'm probably at 75 times a day and it's very irritating.

I could tell last night that I was going to have trouble sleeping so I took an Ambien and I got a good six+ hours. I don't want to become reliant on the stuff but I had to get rest to break the cycle.

The plan, based on feedback from some of you here and some other folks as well, is to use Tylenol PM tomorrow night and see what that does. I may also, depending on whether or not the clinic approves this, take the dex at night instead of in the morning, with the hope that I will be wired on Wednesday morning and that by Wednesday night it will be hopfully on its way down. If I can get by with 1-2 nights a week of Tylenol PM, that would be great. However I don't want to screw up the cadence of administration -- the dex, Revlimid and Velcade synergies are important so I'm going to clear this concept with the clinic.

Have a good week, folks! At some point soon, I'm going to post all my blood numbers over time so that we can look at the impact the therapy has had on everything. I'm sure you will be on the edge of your seat waiting for that! :P

Thursday, December 3, 2009

Note to self...zzzzzz....must....take....Ambien....


Tuesday night four hours sleep with Ambien.

Wednesday night forgot to take Ambien, slept for 90 minutes.

Cold is lingering -- no surprise given lack of sleep.


Tuesday, December 1, 2009

My dreams of being Barry Bonds are over...


Got the news from the pee-pee doctor today. My testosterone is around 400. The end of normal is 250. I'm squarely in the normal range. All the other markers he tested for are likewise normal. I don't have any hormonal issues. Evidently there is no muscle-saving benefit from juicing me once my testosterone is already normal (I don't think I agree with this, given the success of certain baseball players, but whatever) and he is trepidatious about side effects, so he doesn't want to do anything.


Well...I could go anywhere with a host of jokes but at this point I'll keep my mouth shut.

Other bloodwork came back fine today. White count is up, mid 7s, in response to the cold I've got. Nice to see my marrow can still make the good guys. All other counts basically normal, with the continued situation of having more young white blood cells than old ones. That will be the case until I'm off Velcade.

Rotten Dex day. Throat is killing me. Wide awake...hoping the Ambien will work tonight!