Monday, July 26, 2010

If I Only Had a Brain

I received an email today titled: "you blog". Not sure if that was a typo or an order. So, to stay on the good saide of J. Sadwith, here goes: First word on the medical front.

Cancer Numbers: M protein 1.5; Iggs 2000. THese are very good numbers for me. M protein varied between 1.7 and 1.9 at MDA. IGGs were aroun 1900. The dropping of the M protein is very encouraging.

My other numbers have been good, EXCEPT for the white count. I don't seem to be able to hold white cells--particularly the neutrofils, which are the really good white cells that fight infection. I am neutropenic (meaning I am prone to picking up bugs/infections). This is due in part to some of the meds I'm on, to the revlimid, and just part of the recovery from a transplant. I'm sure it's also due in part to the fried bone marrow I came home with from Little Rock. You may recall that all of my blood counts were in the toilet and they never fully recovered before my transplant this spring (white count in particular). I got 2 growth shots last week (neupogyn) but, although the white count jumped, it's back down today (2.2). So the plan is to get a weekly shot of neupogyn and to reduce the revlimid to every other day. I'm only on 5 mg of revlimid, which is quite a small dose.

I'm also having dizziness; sometimes fairly significant. Of course I have this hearing/ear problem which could contribute to the vertigo. And I am on a lot of meds which could also be a factor. Anyway, this has earned me a brain scan. Hence the title of this post. Rifkin wants to rule out an infection, which I think is highly unlikely, and also to get a picture of the sinuses and ear canals--which I can understand. I see the ENT (ear, nose throat specialist) tomorrow to retest my hearing and to discuss hearing aids.

But putting aside those issues, the fatigue and the neuropathies in my feet, I'm feeling pretty good. If I could elminate the clinic visits 2 to 3 times a week, and my daily 2 hour naps I might actually be able to put in a full day of doing nothing. Just kidding. I'm mostly feeling that I'm really tired of this 5 year ordeal. I'm feeling worn out. I tried to persuade Rifkin to let me go swimming (since I love to swim), even lining up the pool at a friend of mine's law firm (thanks Jeff, it usually pays to know people in high places). But no go. No swimming anywhere. My bike riding is also limited because I cannot be exposed to sun, even for the shortest time. I have to put sunblock on every morning, even when I'm not planning on being out for long, just in case. (Sun exposure/burn can provoke graft host disease).

Anyway, I just want my life back. Although I have weathered some rough times these past years I have managed not to have much depression. But now, it seems to be creeping in--perhaps, because I'm not feeling like I have to hold it all together in the midst of a crisis--which is how the last 5 years have felt (this is the analysis of another friend, but it makes sense to me). I've never allowed myself to go to this place. I was talking with Rifkin's nurse practitioner today, whom we really love, and she reminded me this is a chronic disease and that's how it's going to be. As she said, "you're going to have a new normal." To which I replied, "that is NOT normal". (incidentally she is moving to Houston to work at MDA. we'll miss her, but will still be able to see her when we're down there). So much for my bitching. I'm sure I'll get over it. If I only could go swimming.

Now on to the social stuff. I made two promises when I left Houston--that I would go back to Dickinson, ND to see my mother and to attend my 40th high school reunion. And to go to NYC to watch Catherine finish the triathalon. I can now confess that I had a good amount of concern about these trips--going through airports, traveling on planes, and being tired. But they were uneventful from the standpoint of being exposed to bugs. The trip to ND was good as it preempted any traveling by my mother, which she finds more taxing as she gets older. Dickinson is a small town and things are a bit slow there, which was fine with me and gave me time to nap every afternoon. A high school classmate and I made a vow at our 30 year reunion that we would see each other at our 40th. At the time it was an easy bet for me and a push for him, as he was wrestling with colorectal cancer. He's had many tough times over the past 10 years, and you know my story. But we made it. As I walked into the opening reception there he was, standing at the door waiting for me. Big hugs, high fives and "we did it," and we went on to celebrate. Don't worry--no alcohol for this guy. My liver is working overtime just getting rid of my medications.

And then there was the triathalon. She did it! Susan and I were at the finish line in Central Park as Catherine ran across. 4,000 swimmers/bikers/runners. She did the entire race without stopping, swimming 1 mile in the Hudson, biking 25 miles and running 6 miles. She looks great. We visited her office at Yahoo! and met many of her friends who were running the triathalon. What a young enthusiastic group. This was a fund raiser for the Leukemia and Lymphoma Society. Yahoo! raised $200,000! Because of their great fundraising the LLS is naming a grant for Yahoo! The firm got to decide which blood cancer the money could go towards and they chose myeloma because of Catherine's moving story of what we've been dealing with these past years. Susan and I got to tell them how much we appreciated their compassion and how much it will mean to research and patient services for people with myeloma. We also got to see Susan's cousin Arlene, her husband Jim, their kids, and their grandkids. It was great but I was exhausted. I came back to Denver after 4 days. Susan stayed an extra week. We had a great time with Catherine and I can't wait to get back there when I have more energy.

Despite my grouching I feel very good about where things stand after this transplant.. We still have some treatment left (the vaccine trial). And as my anti rejection drugs are reduced Mike's cells will hopefully begin a frontal assault on the remaining myeloma. It feels like we may have turned a corner. Maybe that's why I'm feeling low---I want to get back into life but I'm not ready to accept my "new normal." But as Susan always says, "at least you're alive."

So that's the news from last month. I'm glad to be home, in Denver where the weather is mild and I can relax. How's that John? Best to all.


Seal Family said...

SO glad to here from you!! A month is too long but totally understand. Hi to Susan and "Way to go" to Catherine!! The Seal's

Steven L. Ritter said...

What ????? No bike riding!!! Not acceptable!! I have lived on my bike the last 3 months. Riding between 100 - 150 miles per week. It has knocked my numbers down to where I was last October! Now I know it is going to be winter soon enough, and riding is hard in winter because of the cold and rain. What I have planned is a good set of rollers for the house. You get to ride your normal bike and it folds away nicely. You might want to start with that and see how it goes. It's really is nice to read your updated blog. I was sure that no news was good news. Remember all of us here in blog land like to hear from you. Get STRONG and you will see your friend at your 50th!

David said...

I hope you get the same result from your scan that I got on mine a couple of years ago: "there is nothing in your head!"
Thanks for the update and continued wishes,prayers for you. Had a great time seeing your Mom and Bob, they looked great! Dave C

kathy phillips said...

Dan, You have every right to be "grumpy" or whatever you want to be, because that emotion doesn't seem to last with you. You are the strongest person I know both mentally and physicially and I know that soon this will be behind you and you'll be swimming and biking everyday. Please don't apologize for expressing how you are feeling. Take care, clean up that room and God Bless all of you.
We love you, Kathy and Don (CA. cousins)

tim's wife said...

It's great to read your M-spike is going down. Hooray! The story about your classmate and you was very touching and a big thank you to your daughter and yahoo from all us MM families. I think this blue feeling you're having is to be expected. For one thing, sometimes folks tough out the rough stuff and then it hits the old psyche when they
relax and things calm down. Secondly, fatigue like you are experiencing can be a big cause of depression. I suffer from chronic fatigue problems and depression seems to go hand in hand with it.
The body's exhausted and so is the mind.
Lastly, there's just no way that all you have been through with that chemo and all the meds has not affected your serotonin levels and all that. That "new normal" saying is true but sometimes annoying. It's true that we may be forced to accept that MM is in our life but this "living like you were dying" stuff is not "normal."

Susie Hemingway said...

Good news on the M-Spike and although you are still feeling weary, you do seem to have accomplished a lot this Summer. H is not allowed to swim either and I doubt he could ride a bike now but keep improving for no doubt you are. Every best wish from us here in the UK

Anonymous said...

I have been getting the 'fighting blues' too, as I come up on my 2-year mark since diagnosis. I just want a little higher quality of life. It's great that you were able to make your trips and enjoy friends and family, that is precisely what I am striving for. I had to cancel a trip home and I think that has triggered the ol' 'woe is me's' going on in my head lately... But I manage to find things to be grateful for and keep trudging on!