After having a good Wednesday that got better as the day went on, Kathy went from bad to worse on Thursday. The chills arrived while reading the morning paper, then the fever. We finally made it to the scheduled blood draw at 2:00 but the nurses couldn't eliminate the fever either. I think it was in the 103-104+ range.
So, back to the hospital. They used cold cloths or ice packs when it spiked around 2 a.m. and when I got there at 8 a.m. she was fever free. Let's hope it stays away so we can start Round 2 of the chemo on Monday (scheduled for Nov. 21,22,23,25,28,29,30.
Kathy did have some toast and bacon for breakfast and then needed to sleep. I'll try to update this tonight or tomorrow.
Bad News and Good News: The bad news is that at I am not a viable candidate for a Blood and Marrow Transplant; the good news is that I am not a viable candidate for a Blood and Marrow Transplant. Say what?
Late afternoon on Thursday we (John, Pat Dorn and I) met with Dr Hogan, one of Mayo Clinic's hematologists/oncologists and an expert in BMT transplants. We had seen him in August and after that meeting, I was pretty sure I didn't want to pursue a transplant. But after encouragement from others--family, friends and medical personnel--I decided to kick the door wide open, the door I'd left open in August, in order to at least explore my eligibility. Nothing to lose, right?
Well, It was the right decision and I didn't lose a darn thing in the process. In fact, I think if I would have lost had I NOT pursued the exploration. I can say with satisfaction that I did everything I could and left no stone unturned.
Here's the gist of our meeting:
Blood and Marrow Transplants are dicey for everyone, but dicier for people who have a number of risk factors. The disease itself, of course, is the biggest risk factor, but pile on a few others and the chance of a successful outcome is greatly diminished. The risk factors I'm dealing with include my age, the nature of my particular type of Myelodysplastic Syndrome (atypical, with a relatively rare chromosome abnormality), and a history of breast cancer (even though my breast cancer was teeny tiny, removed with a lumpectomy).
What Dr. Hogan was most worried about was that even though I have good health in many ways--low blood pressure, low cholesterol, no history of heart problems--my disease is not under control enough to consider a transplant. I've had only one round of chemo, not enough to determine the efficacy of the drug. He said I really need to complete 4 or 5 cycles, followed by a bone marrow biopsy, to know if my blood has gotten healthy enough for a transplant.
Add an extremely short list of possible donors to the mix and it becomes formidable. My siblings are really the only donors to consider because, in my case, anything less than a perfect match would be another risk factor.
I asked Dr. Hogan what he would say if I insisted that we go through with a transplant. His answer was sobering. He said, "I would have grave concerns if we were to attempt it."
So, here's where we are...
I will continue to have transfusions as needed while I'm having chemo treatments. In February or March, assuming everything goes as planned, I'll have the biopsy and we'll see. Dr. Hogan said it's always possible to revisit a transplant if my disease stabilizes. If, after another evaluation, I'm still not a good candidate, there are other options, clinical trials among them.
So how is this Good News?
Because I actually felt a sense of relief by the time our meeting was over. Quality of life is more important to me than length of life and post transplant life, with all of those risk factors working against a positive outcome, would most likely be a hell more hellish than Hell.
My sister-in-law said that if they told you that a there was a 90% chance of a successful cure after you put in the biggest fight of your life, (which, by the way would never happen for anyone) you may be more willing to go the distance no matter how hard it is. My chance is under 40%, probably closer to 10%, and that's the deal breaker.
I want to live the rest of my life as normally as possible. I want to spend time with my husband, our children and grandchildren. I want to visit with my siblings, my in-laws, whether by phone or in person. I want to stay connected to my friends. I don't know how the future's gonna look, because my crystal ball is on the fritz, but I hope to live each day to its fullest even if that means only reading the morning paper.
Next week I have a blood draw on Monday and another on Thursday. If a transfusion is necessary, it would probably be on Friday. Thanksgiving week I will start my second round of treatment in Chemo Bay.
We'll be hosting our family again the Saturday after Thanksgiving, if all goes according to plan. We'll make the turkey and all the rest will be provided by the kids. If there's some reason they can't come here (I'm sick, the kids are sick), the back-up plan is to go to Megan and Troy's. We will have much to be thankful for this year.
Oh, yeah...I've thrown myself a big old Pity Party the last few days. I know all about being positive in times of health crises; however, emotions hijack my intellect and negative thoughts poison my outlook. I'm not beating myself up for how I feel -- I think it would be worse if I didn't acknowledge my feelings -- but the hard part is getting back on an even keel, not dwelling on the stinkiest aspects of this stinky experience.
So what does a Pity Party look like? I submit that most people know because they've thrown one of their own. (Aside: What's the origin of THROWING parties? I mean, I've thrown showers, birthday parties, anniversary celebrations and I can't recall even one time when I've actually THROWN something. Just wondering.) In my case, the party "un-favors" included fear, frustration, sadness, anger, exhaustion -- just overall bitchiness. OK, so John asks how different is that from my everyday demeanor. But, seriously and, more importantly, honestly, I am trying to teach myself to embrace these emotions because I think it helps me better appreciate the tiniest of silver linings that appear now and then. I want to be fully human and that means I need to accept the whole kit and kaboodle of this disease and all of its implications.
Full disclosure -- nobody would want to come to one of my Pity Parties; they're not fun. There's a lot of crying, arguing, and blaming (self and others). I think my biggest issue is loss of independence. I've never wanted to be a diva or princess and consider myself to be fairly self-sufficient. Now I rely on others for so much and it doesn't sit too well with me. I know the drill -- other people want to help just as I want to help others -- but it's just so damn hard to accept!
Pity Party's over, folks! Thanks for listening. Oh, one last thing...cancer sucks! OK, now it's over.
John and I are heading to Rochester this evening ahead of my appointment tomorrow with Dr. Hogan, one of Mayo Clinic's hematologists. By the weekend we should know if I am a viable candidate for a Blood and Marrow Transplant (BMT).
John's brother and his wife, Dave and Pat Dorn, graciously invited us to stay at their home in Rochester when we have appointments. We are so grateful for their kindness and hospitality. Plus, Pat will come to our appointments to be another pair of ears. See, that's one of those silver linings!