Sunday, June 07, 2009

Status After A Month Back in Denver

First, picking up where the last posting left off--the bike ride. Prior to embarking on the Little Rock aggressive chemo regime, I was able to ski for 4 hours, or ride my bike 15 or more miles, or swim a mile. The bike ride last week, a mere 2 miles, just about did me in. Not enough, however, to stop me from doing it again the next day, which further leveled me. Today, however, the 2 miles were easier. Strength is gradually returning thanks to physical therapy twice a week. I've also gained 6 pounds in the last 10 days or so--although I lost 5 pounds in the first week back, so I'm a net + 1 pound since returning home. The appetite is improving, although the taste buds are still impaired from the thrush I have had for the past 6 weeks. That also is improving but quite resistant--I'm on my 3rd medication. And then there's the rash, which appears to be history. At first it was thought to be graft host disease, but given the rapid improvement once I started administering a steroid ointment, the thought now is that it was my body's reaction to the thrush, an "oh my god, what is happening to me now" kind of reaction, as explained by my dermatologist. Never heard of that before.

And now the "numbers" report. Myeloma markers (IGGs) jumped from 3800 to 4200 early last week, which caused me much concern, given that my white and red cell counts, as well as my platelets have not yet returned to normal or stabilized. Dr. Rifkin was about to start me on some steroids to try to contain the upward movement of the myeloma, but decided to wait to give me a few more days to continue to "heal", as he put it. Then I get new myeloma numbers: IGGs drop to 3660. Go figure. No treatment and numbers are going down--contrary to the trend over the past month? I didn't believe it, and emailed Arkansas and requested that they ask the lab to verify that number. Six hours later I'm told the lab says the IGG number is correct. I don't know whether we are on a downward trend or just bouncing around, as can happen. The next week or so will tell the tale I guess.

I should note that 2 days before the blood was drawn which resulted in the lower IGG number I started drinking a concentrated vegetable potion that a close friend sent to me. She has been trying to get me to take this for a couple of years, but I have resisted primarily because I didn't know whether it would interfere with the chemo I was taking. Now that I'm chemo free I thought I would give it a try. I would be surprised if some change in IGGs could result from just 2 days of ingesting this new potion. I will, nevertheless, continue to take it as long as I am not on any chemo.

The adjustment to being back home has not been as easy as I expected, but is getting better. The first couple of weeks we were so wiped out we could hardly do much. Then we got the news that my blood counts were not recovering. Then we got hit with a major flood in Julia's room (in the basement) from a heavy spring rain--the third year in a row, despite having hired people each to fix the problem. New contractor has now deposited big piles of dirt on our front lawn as he digs around the foundation to locate the problem. Meanwhile Julia is displaced from her room once again. But, after a month we are returning to some semblance of a life. Susan is pulling out the depression that we both suffered as a result of the lengthy stay in Little Rock with little progress in terms of eradicating this myeloma. I've got more energy and hope that my blood counts stabilize in the next couple of weeks so we can develop strategy for getting back at this myeloma. In the meantime I have tried to get more involved in the trial lawyer's work as I am still the president, even though I've not done much for the association in the past 6 months. In addition, I continue to do what I can to regain my strength. I desperately would love to return to my swimming but I'm sure I won't be allowed in the pool until the white cells have been normal for a few weeks or more.

So that's the scoop for now. Hope you are all enjoying the beginning of summer as much as I am.



Nick said...

Dan -

Glad to hear, first of all, that you're far from giving up. I told Susan that we weren't going to accept that if you were, so I'm glad we didn't need to take sterner measures! :)

I'm told the IgG can bounce around + or - 10%, and if you get a cold the IgG will almost certainly spike, so I wouldn't get too invested in one set of numbers. Let's hope they're edging down so you can continue to recover before Rifkin hits you up with the Dex!

We miss you here. Please let Susan know we had ANOTHER FIRE DRILL IN THIS STUPID BUILDING today. Somebody burned toast. :)

Be well -- and keep in touch! We told Susan we'll come to Denver to have a celebratory dinner when we're both feeling better!


Nick and Jill

Ingrid said...

Hey, did you forget ?
One step at a time.
One after the other.
Two miles of bike ride, hey, great, wonderful, don't forget: it IS a lot.
Especially for all you've been through. It TRULY IS a lot.
My congrats to you, just take it easy.
And to Susan, I wish I could be there to borrow you my shoulder to lean on. Hug you. Give a smile to Dan, help you out with the little things.
Love is all I can send you, but believe me: I have a lot of it !

tim's wife said...

Garlic is very good for thrush. Eat it raw, gargle with it(mixed with water), take as much as you can. That and acidopholus can help alot along with avoiding sugars and fruits(which feed it.) IGG numbers can bounce back and forth due to many reasons but I'd like to think this drop is due to your
own immune system healing and getting back "on-line." Wishing you well.