Wednesday, March 25, 2009

And the Plan Is......

We will be proceeding with the "super beam" high dose chemo next week followed by a stem cell transplant. Beam is just an acronym for 4 of the 9 drugs I'll be getting. We met with Barlogie yesterday and unfortunately, the bone marrow continues to be "packed" with myeloma cells. Although the IGGs have come down to around 3200 that apparently is not significant in light of the bone marrow being so full of myeloma. I've been given another week off to continue to recover and to regain some strength. I start physical therapy tomorrow and otherwise have daily labs until the chemo starts next Wednesday or Thursday. The chemo will be administered over 5 days, after which I'll be given my stem cells back and then we wait for the stem cells to produce new cells to replace the ones destroyed by the chemo. Everything will be done on an outpatient basis, although I'll spend about 5 hours a day at the hospital getting the chemo and being observed for any reactions. Catherine and Julia will be here next weekend which will be a big lift for me as well as Susan. I do wish it felt like we had made some progress over the past 2 months. The most I can say is we've held it at bay, but now it's time to start slicing it up. Not much going on for the next week, so I likely won't be posting much until the chemo begins. Here's hoping you have great spring weather for the next week ---yes, even you North Dakotans who are apparently homebound due to a blizzard. Why did I ever leave that state? Oh, yeh, the weather did play a role in that decision.

Monday, March 23, 2009

Four Years

Yes, four years ago today I received the diagnosis of multiple myeloma. Faint memories are all that remain of the life before cancer treatment. I have replayed the words my doctor told me in March 2005, "it's incurable, but treatable," a thousand times in my mind and all I can do is smile with disdain. "Treatable?" Infections and broken bones are treatable. The past four years of "treatment" gives new meaning to the word. But here I am, the journey having now placed me in Little Rock, Arkansas. If nothing else we are learning to live with the unexpected. It seems we plan our lives so carefully, work so hard to get somewhere, whether financially, professionally, socially, but our efforts at control are illusory at best. So we learn to accept what life brings us and to seek the joy of each moment, rather than dwell in the fear of what the future might bring. Oh, we have our moments when we look upon others whose lives seem to go along without a hitch; whose plans in fact come to fruition; whose lives seem to work. But amazingly, there is no resentment, no self pity. When dealt this hand, at least for us, it came with acceptance. And so we move forward.

As much as we have learned about ourselves over these past four years, we have learned more about the compassion within so many of you. We have been overwhelmed by the outpouring of love and support for our family from so many people, all over the world. I've never seen myself as someone who was there for people during their times of struggle, because I was mostly too wrapped up in pursuing my goals. Yet, without regard for whether I was there for others or not, it seems the world has reached out and taken us under its wing to nuture us through this struggle. You have made us much better people through your compassion and support. You have taught us what a simple phone call, email, or card can do. You have taught us that we can make a difference in the quality of other's lives, and it takes very little effort, only thoughtfulness. So, those are my thoughts on this 4th anniversary. We are so grateful for everyone who has stood by us, carried us, and cared for us. Our little world is a better place because of you. Thank you.



Friday, March 20, 2009

Once More Just For Grins

Met with Barlogie this morning. Within an hour I was having another bone marrow biopsy. I'm not sure I have any hip bone left; but I'm so used to the procedure that I took it without a hitch. The med techs only said, "what are you doing back here? Why is he doing this?" With me, it seems its an integral part of restaging my disease. Either that, or they're coming out with a new jigsaw puzzle---reconstructing Dan's hips.

Not a lot of info to work off during the exam with Barlogie, as I haven't had any testing in a few weeks, so not much new there. I am recovering well from the hospitalization; the blood counts are gradually coming up and the infection index going down. Based on some IGG numbers (3200) and M protein number (2.4) I think I've had a moderate response to this latest chemo--it just took awhile to show up. Anything that will reduce the tumor load for the transplant is good. Barlogie wants me to have some time to recover from the hospitalization and the chemo, which I'm interpreting as perhaps another week or so without any treatment. We see him again next Tuesday.

After I recover I'm pretty sure we will be going into transplant with the Beam treatment--9 high dose chemo drugs administered over 5 days. He says it is the best treatment they have for resistant disease and has optimism about its effectiveness with me. No second transplant. If it doesn't bring me into complete remission, then he would hope it would lower the cancer levels enough that we might squelch them with further pharmaceutical treatment.

The days continue to feel very long (8 hours at the clinic today) and the boredom with a life centered around treatment keeps me thinking of how much I love Colorado and the incredible number of friends we have waiting for us to return to our life there. We love you all and can't wait to see you.

Wednesday, March 18, 2009


I was finally discharged from the hospital last night; after a week of having my sleep interrupted every 2 hours, and feeling like a caged tiger. For the first 4 days I was in "isolation", which I was told meant I couldn't leave my room. Then the ban was lifted and I was able to walk the halls. Discharging diagnosis: influenza and viral pneumonia. We're now trying to get tests scheduled but so far, no cooperation from the insurance company. Had 2 tests cancelled today due to nonapproval. In the meantime, we will continue to go in daily for lab work, a growth shot, and infusion of antibiotics. The blood counts are gradually coming up and the infection index going down. We'll see Barlogie after we get testing done I suspect. I need as much time as I can get to recover from this episode. In addition to just feeling weak, I dropped 12 pounds over the 10 days. Not a diet I would recommend. Susan has been such a champion through this. How utterly boring for her to choose between sitting in a hospital room or coming back to an emptly apartment. When the hospital food turned my stomach she ran out to find something more palatable. She would come into the room every day and "straighten up" as they weren't very good about that. She ripped a few doctors and nurses about the care I was receiving and has shown despite 30 years in Denver, New York continues to run in her veins. What would I do without my Suz?

We've received some beautiful and thoughtful notes from a number of people, as well as some gorgeous flower arrangements that bring life and light to the apartment. We are so appreciative of all your support and please know we feel as though you continue to carry us.

Sunday, March 15, 2009

And So It Goes

The weeks continue to present new and unexpected challenges. I survived the two bone marrow biopsies and had my chemo bag removed a week ago Friday, then promptly spiked a high fever and found myself on a different course this past week than aniticipated. We were dealing with daily lengthy visits to the clinic from Saturday through Monday, trying to keep my fevers of 103 to 104 in check. We saw Barlogie on Tuesday and put me in the hospital, and I'm still there. Seems despite a flu shot and tamiflu, I got the flu. Right at the time my white count was as low as it could go, so absolutely no immune system to fight. The biggest concern being not just in shutting down this viral influenza, but also making sure I don't pick up something else while I'm so immune suppressed. Fevers are lower but still pop up around 102 at night. I've been pumped full of more antibiotics, etc than I could recount. Hoping to get out of here by tomorrow, but it could be a couple of more days. Then some recovery time. While the meeting with Barlogie was supposed to discuss the plan going forward, we spent little time on that given my fevers. We'll keep you informed. Thanks for all your good wishes.
Much love to all,

Tuesday, March 03, 2009

Wrestling With the Beast

I'm old enough to know, if it sounds too good to be true, it probably isn't true. I told Susan a few days ago that I was prepared to hear that the latest bone marrow where the myeloma cells dropped from 90% to 5% was an abnormality. The meeting with Dr. Barlogie today confirmed those suspicions. The "numbers" from the last bone marrow (last Friday) don't show any significant improvement from the bone marrow of mid January, ie. 90% myeloma cells. Although not that bad, the numbers are all over the map from the 3 bone marrows since then, leaving him to explain that we're not getting an accurate sampling from the aspirations probably due to the adherent quality of these myeloma cells. As he said, we haven't made much progress and this will call for more "drastic" measures. I think I've been riding this roller coaster so long I can see the ups and downs coming. But before we go to drastic measures, we start with a few days with an increase in the thalidomide, followed by a double bone marrow biopsy on Friday--one on the right and one on the left. (I'll no doubt be waddling like a duck after that procedure). I don't think any of us are expecting some great change in test results.

The more drastic measures probably involve that "Beam bomb", which he so readily dismissed at our last meeting. This is a one time transplant with 9 high dose chemo drugs administered over 5 days. Then I receive my stem cells back and recover from the ordeal. This would be done on an outpatient basis and as he said, "you can handle it." I'm not sure what other choice I have, but my response was simply, "I'll do what I have to do, you do your part." It's that ornerary trial lawyer in me that will carry me through--either that or those strong North Dakota roots. Always the optimist I told Susan on the way home, that at least its only one transplant. We see Barlogie in a week and he will have a plan for us then.

Yeh, this is tough stuff. More mentally than physically. We are forced to draw down into resources we never knew we had, but we continue to discover that our depths have not yet been reached. Susan and I looked at each other as we left the doctor's office and she said, "we'll get through this, we've done it before." Yes, I know that to be true. My stalwart supporter is always at my side.

Never underestimate what you do for us with your unwavering love and support. It's hard being away from home, dealing with this nastiness, and contact with all of you keeps us going. We'll let you know the plan in a week.