The Journey Continues--After A Trip to Florida

No surprises today at Rifkin's office. IGGs are up to 5000. Treatment is scheduled to start September 17th, the day after we return from Florida. Yes, we are going to Florida. Susan and I agreed in advance of the appointment that we would not press the case for going to Florida, but rather would let Rifkin make his recommendation and we would accept it. While he's not at all happy with the rising IGGs he does believe in our having a life. When asked what risk I would face by delaying treatment 3 weeks, his response was simply: "you'll be at risk for hurricanes." So we are, of course, very happy that we'll have 2 weeks in sunny Florida to celebrate our 25th anniversary, and rest up for the next onslaught of chemo.

Following Rifkin's exam, 2 nurses gave us the rundown on the chemo I'll be receiving: VDR--velcade, dexamethasone (steroids), and revlimid (a thalidomide derivative), along with some type of antibiotic. So, we got the list of horribles (possible side effects): fatigue, neuropathy, blood clots, muscle cramps, diarrhea, constipation, and some lesser ones. Nothing new, but a bit sobering after not having to deal with these issues for the better part of a year, and while the 2 chemo drugs bring a greater chance of efficacy, I have the sense they bring an increase in side effects. The plan is to treat me with 3 or 4 cycles of chemo--3 weeks per cycle and then reassess. The cost of this new treatment??? An astonishing $10,000 per week.

Following that course of treatment Rifkin suggested we'll talk about another transplant. I still can't bring myself to think about going through that again, so I pressed him on whether the new drug combos would, in fact, decrease the chance for another transplant. He was encouraging, but noncommital. The standard of care these past 5 years or so is to have 2 transplants, as that has proven to be most effective in stemming the growth of the disease for any significant period of time (2 to 3 years). But the toll is high and the recovery excruciating. Besides, my autologous transplant (using my own cells) was not successful--according to Rifkin at the time. Now, it seems he wants to reassess that impression in light of my last year of stability--or look at a transplant from one of my brothers, although he said he would prefer not to put me through that, as a transplant from a foreign donor (yes both of my brothers are "foreign" to me!!!), is even more difficult to deal with.

Are we having fun yet?? I am still of a mind that the fast paced research will bring enough drugs on the market that I can be on a maintenance dose for the rest of my life, rather than having transplants every 2 to 3 years. The trick with that approach is to find drugs that the myeloma doesn't figure out how to work around. It is apparently a smart disease--certainly too smart for my own good!

So, I'm working on adjusting my mind to deal with the return to chemo, as well as an unknown future. (but then aren't all of our futures unknown?) I'll get there and going to Florida with my bride will certainly help. I guess it's also time to kick up that meditation practice, even though I have maintained my daily practice, I found that adding an extra hour of meditation helped keep me out of depression during the rough spots. Kind of the opposite of the mob's "going to the mattresses", I guess.

And Julia leaves for South Africa on Wednesday. Boy are we going to miss her. This is such an adventure--3 1/2 months on the other side of the world! Her blog address is southafricanstudies.blogspot.com for those of you who are interested in following her adventures. Tune in as it will likely provide some interesting narrative about the South African culture. What would we do without the internet?

Catherine will have to carry us while Julia is away. We expect that we'll probably see her every day for her morning cup of coffee with her parents before she heads off to work, as well as for at least one dinner a week. Both girls are already stepping up to keep their Dad in good spirits through this next ordeal, with funny greeting cards and "you'll get through this Dad" words of encouragement. Susan is similarly positive and none of them will let me spend any time worrying about how I will handle this next round.

So there you have it. It has been a nice break but I guess it's time to get back to work. I hope you all are ready, as your shoulders proved quite large and strong for us in the past, and we may need them once again. Bill Withers' song "Lean on Me', comes to mind:

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

Our family continues to marvel at the hidden blessings cancer has given us. Life has blossomed into an amazing experience, and after all, isn't that what we all want out of our lives? So, on to our next adventure. We're sure glad you're with us on this journey.

With Much Love and Gratitude,
Dan

The Run is Over

Much to our surprise, given how I have generally been feeling, and the good bone marrow biopsy, we had a difficult visit with Rifkin today. The IGGs have spiked to 4200, up from 2900 last month. I pressed him on how the IGG's could be so high, given the bone marrow biopsy. It seems that myeloma is "patchy", meaning that the bone marrow biopsy can tap a lower concentration of myelma and give a distorted view of the degree of myeloma. And I thought the bone marrow biopsy was the definitive test!

I told Susan they should have put me in a blender and shaken me up before the biopsy to make sure the myeloma was fully diluted. She didn't think I was funny. Anyway, the IGGs are concerning enough that we will be starting treatment--the only hitch being our 25th anniversary trip to Florida planned for early September. I have another visit with Rifkin in late August and if things are relatively stable we'll get the green light and I'll start treatment as soon as I return. Otherwise, our trip is cancelled, which would be the 3rd cancellation for me this year. Does it seem that the message I'm being given is that I should just stay home?

The treatment options are also more narrow than I expected. Although there are new drugs being tested, the criteria for the clinical trials generally exclude you if you've had 2 cancers, so my prostate cancer excludes me from participation in at least one trial, and may exclude me from the very promising HSP-90 trial. We are most likely looking at the 4 drug combo of velcade, revlimid, dexamethasone (steroid) and an antibiotic.

While difficult to hear, it is not as if I ever thought my cancer was gone, or that I would escape further chemo. We will deal with this, as we have with much worse over the last 2 years.

We continue to be blessed by the support of family and friends. My brother Tom and his daughter Gina were here over the weekend. Gina is a wonderful young lady and we were very glad to be able to spend some time with her, and for our "girls" to have the chance to meet her, as young adults. My cousin Sheila Carpenter and her daughter, Diana, arrive today for a short visit. It has been years since I've seen Sheila and we are looking forward to her visit.

Julia leaves for a semester overseas--South Africa, at the end of the month. We will miss her greatly but are excited for her and know that she will return a very changed person.

And our lives go on. As I've often said, it's certainly not the life I would script for us, but it is a life. And all of you make it worthwhile.

Love,
Dan