Monday, July 20, 2009

Inside Looking Out

I think I'll start from the beginning. That is, when I first considered going to Arkansas for treatment. Many of you were with me in those early postings last November and December. In brief, my maintenance treatment here was no longer working. Rifkin had not articulated a definitive treatment plan. And quite frankly, I was encouraged by my meetings with Barlogie that he might get me into remission (I was, after all, "low risk", according to his testing). Almost 4 years of treatment made us all want to believe this nightmare might be brought to an end. Well, 2 months delay in getting treatment (again, Barlogie thought it better for introduction of his protocol that I not be in the middle of a treatment regime), and my cancer levels jumped from a stable 10%--12% to 90%. Change of plans, hit me with everything in the cupboard. Spare no cell in my body from the assault.

And herein lies the great divide between the Arkansas treatment plan and that used by Rifkin, Mayo, and a number of other cancer centers. Blast it out of existence vs. manage it with a combination of drugs. Each has its risks. Neither is a "cure". Being in remission does not equal being cured. Managing the disease is not remission. No one has the answer. As you all know the "blast it out of existence" approach didn't work for me. Instead I now bear the scars of that unsuccessful approach, which is marginally functional bone marrow, completely numb feet, and skin that flakes off like dandruff. And those scars (primarily the injured bone marrow) now impede my ability to withstand even the mildest of treatments. I am not one to look back and live with regrets. I made my decision with as much info as I could ingest. I know that had I stayed in Denver for treatment that course may not have been successful either, and I might now be shuffling off to Little Rock for treatment. That being said, I must admit I am extremely frustrated that my Arkansas treatment regime has left me in a state where I can currently receive minimal treatment for a disease that is "angry", as both my doctors say. As a former trial lawyer, it feels like I've just gone through a "bet the company" piece of litigation, and haven't fared very well. I always counseled my clients against taking things to the brink--too risky and they needed to be able to afford losing it all. And I must say that I never appreciated that the super beam plus chemo along with the transplant was an "all-in" bet, that might leave me with no more chips to bet. I even specifically asked whether the super beam plus chemo would prevent me receiving a transplant in the future (whether from my own cells or my brothers'). The answer: absolutely not! hmmmmm. So, you ask, what's my point, other than venting? I'm not sure, except to say, sometimes learning the lesson, once again, that we can't see into the future can be very frustrating and difficult.

So, on to the current numbers and the plan. Plasma cells (which are the cancerous ones generated by myeloma) are at 75%. They were 50% when we left Arkansas. They were at 90% or higher before the transplant. The disease is still "angry" according to Rifkin. More info on things such as "flow", that I don't really understand, will be available next week. The plan? Rifkin told me there were 2 courses of action: blast it or go at it with more finesse. Blasting it, per Rifkin, would likely leave me with bone marrow that will never recover. He didn't recommend that course but said that is undoubtedly what would happen if I were in Arkansas. (My marrow is slowly recovering. This is the first time since I returned to Denver that I have not needed a blood transfusion within 2 weeks of my last one. The white count is now 2.0, having received a neupogyn shot last Monday. Slow progress---but progress) Back to Rifkin: I didn't even consider the "blast" given the difficulties I have had since receiving the high dose chemo in early April. He says he does not want to give me any mylosuppresants, i.e., drugs that might potentially suppress the myeloma, as those drugs would also adversely affect my white and red cell counts. So I'm starting a regime of prednisone, 50 mg., every other day. Roid rage anyone? If this holds the myeloma or brings the numbers down, then he will introduce another drug (perhaps thalidomide). If that works to some degree, and my white/red counts are stable, then perhaps another drug, and so on.

The watchword is patience. Whether it takes 6 months, a year, or two years, I am confident the cancer will begin to lose its anger (no one or no thing can stay mad forever--it is a law of nature), the counts will stabilize and new treatments will begin to surface. Susan and I have been through this before. We have tapped our inner resources like never before. We know that is the source of the strength to weather this storm. Susan has been the most unbelievable pillar of support for me and she continues to show that behind those tears that constantly flow is a block of granite so solid that no storm could crack it. Similarly, Catherine and Julia are worried but steadfast in their resolve to help us through this. Catherine told me she is very frustrated with that cancer and is going to have to have a stern talk with it. Go get 'em Cate!

As we walked out of the cancer center I looked at Suz and she at me. We could see the love we have for one another in each other's eyes. We're more in love than ever. Funny how life's most difficult moments also bring blessings. And though we have to walk this difficult path, it is a long road but we're gonna make it.

Much love to all of you.


Brother Ted said...

Thank you for the last paragraph. I must admit that your reflections on the LR protocols caused me some anger and "oh s_____!" feelings. As you described Rifkin's slow and steady "We will get the marrow going again and then we will tame this cancer," approach I began to feel better. But, it was your loving tribute to Susan's strength and your wonderful love for each other that really calmed my fears. Yes, there are days, weeks, months and years ahead, each being filled with that love. Peace and Grace my dear friends.

sigun said...

Dear Dan,

That was a tough one. But I am so relieved Dr. Rifkin has worked out a plan for you. Slowly but surely is will work. We are sending all our love from grey Normandy... Bises, Sigun.

Arlene said...

Hi Danny,

We all love you too!!

Ingrid said...

Right, this is an extremely though post.
And I am with you for no regrets.
As well as I believe that such a strong person like you, with Susan's love on his side can only make it, there is no other possibility.
I am with you two and hug you strongly,

tim's wife said...

Totally agree on the marriage statements. Since Tim's diagnosis,
despite the stress, we are stronger than ever as a team. I have told him in no uncertain terms that he will never go through anything without me by his side and there is nothing I would not do for him. Period. Just a thought here but do you have any more stem cells in the old beer cooler? Tim's doc defrosts bags of stem cells and gives them to patients who have had high dose chemo treatments that have brained their bone marrow. Re-populating the bone marrow with stem cells can help your blood making abilities.

sailor said...

Hey big guy,

One of these days you will invite me for tea and I will fix it and drink with you. You are the light and will rise. You are not leaving! Love, Sailor

sailor said...

Hey big guy,

You must SEE the MOVIE---- The Diving Bell and the Butterfly. It is absolutely beautiful. One day, we'll have tea, and I will fix it and drink it with you.

Love you all,

Becky said...

Hi Dan,
I happened upon your blog a few months ago and printed out what I could to bring to my mother who was in Little Rock preparing for her 1st stem cell transplant. She ended up having some kidney problems and was able to come home for a 5 week "break" before returning again about 3 weeks ago. Tomorrow will be 2 weeks since her transplant and she is not doing very well. Was admitted to the hospital yesterday so they can run multiple tests. She's having kidney and liver problems. She had a reaction to pain patches and morphine and was basically up for 5days with barely any sleep. My sister and brother are there with her. Unfortunately our father passed away 9 years ago from pancreatic cancer. I sure wish he was here for her as your wife is for you. But at least she has all of us.
So sorry to hear everything you've gone through and are going through. This is such a crazy disease that I hadn't even heard of until February of this year when my mom was diagnosed.
I will stay tuned to your blog. The information is very helpful. We're still so confused by MM. It's difficult to absorb everything.
I'd like to stay in touch. My email is
Stay strong & keep fighting.
Becky Hildebrand
Pensacola, Florida