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
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3 comments:
Hi guys,
I was thinking about you all day, today being it is the first Monday of the month. I was going to call when I got home from work, but when I logged on, I saw that you had already blogged.
Dan, I know that you will do what it takes to get through this once again, as will Susan and the girls. We are all with you here in NY. You know that we are praying for you.
As for Florida, that will just take some extra, "you guys need a trip" kind of prayers from everybody, so I say just pack the bags and be ready to fly.
Talk to you soon.
Love you all,
Arlene
Hello Pattersons,
Its hard to believe this is my first visit but I suppose you always have to start somewhere, so here I am. I've been doing my best to update myself through the information and websites posted on here and have to say I am sorry for the disappointing news after all the positives you've been having lately. Please know that my thoughts and prayers are with you as they have been in the past.
I also wanted to ask you about an intriguing opportunity I recently stumbled upon. Its a program called Team in Training run by the Leukemia & Lymphoma society that helps people raise money by training for and participating in endurance events such as marathons, 1/2 marathons, triathlons and cycling events. The website is www.teamintraining.org/. I'm very interested in it but thought I might consult with you first as I know not all charities are as charitable as they could be. Judging by the website, it looks legitimate but I figured you may have more information than what I found during an hour of research.
Best of luck with your trip and happy 25th anniversary.
My love to all of you,
Bob
There sure are a lot of hills and valleys on this pathway. The great thing about that, is the view that you get when you are on the top of a hill. Julia, have a great semester.
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