DEMO DIVA

I'm sitting here having a platelet transfusion at HUP, actually the Perleman Center which is brand new and very nice. I had Chemo in the hospital last week and I felt terrible all weekend as the worst of the side effects kick in. I should feel better once I get the platelets flowing.

I decided to have the bone marrow transplant. Going though months of Chemo with it's attendant side effects and then having a 70% chance of a recurrence in the next two to five years was emotionally and physiologically too much to consider. I have been cancer free since the first round of Chemo and it's very possible I would fit into the 30% who survive long term without any complications or recurrence of the ALM. The transplant is very high risk but also higher rewards, 60% chance of long term survival and almost no chance of having another bout of leukemia. In the meantime a few thoughts.

Cancer does not define me. I consider it a way station, a place to reflect and regroup and plan my future. Why then do strangers who see my bald head feel compelled to tell me their cancer stories ? They assume that I need reassurance from those who have survived. Truth is that 50% of all woman and 1 in 3 men will get cancer, and almost all of us will have a part in taking care of someone with cancer. One older lady grabbed my hand that was holding a slice of cranberry nut bread and a coffee and said "it's going to be alright"like I was in distress or something. Please lady I just want to be left alone to enjoy my cake ! she then launched into "her story" of survival hair loss and regain and on and on, while I nodded and felt my coffee going cold. Another woman accosted me at Trader Joe's while I was enjoying a cruise in the produce section, imagining all the wonderful things I was going to make and pondering which apples would make the best pie ! Again it's this need to tell "their story" and somehow having had cancer makes them my BFF ! Annoying to say the least. I almost feel like I should disguise myself but a wig no matter how flattering is still a wig, hot uncomfortable and not for me.
I'm playing in my garden most days and everything is growing albeit with the attendant bugs and worms trying to spoil my squash and gourds. I squished a small army of yellow and green caterpillars who were munching away on my fennel. Not very zen of me. I'm eating the tomatoes cooked which is how it has to be while I'm in the low blood count zones. Can't risk bacteria and or fungus getting into my immune compromised system. Enough venting ! The platelets are working their magic so it's time for a quick shop at TJ's then cooking, eating and sleeping. Nice this is.

So big decisions to be made. MY younger brother is an excellent bone marrow match for a transplant, and very willing to be a donor.There are three categories of Leukemia patients: Favorable, moderate or Unfavorable. If you're favorable you can select just chemotherapy and expect a good outcome with just Chemo, if you're unfavorable you must hope that you can find a transplant donor since you're odds are not good for survival with just Chemo. I of course am in the moderate group which means my outcome can go either way. This makes for a great deal of deep thinking about which option is best for me. No one can make this decision but me. If I opt for continuing with Chemo then I have four more rounds of six days in the hospital then three to four weeks of recovery so around four to five months in remission after treatment with a 30% chance of long term survival. I have done very well on the the Chemo with minimal problems. I was very healthy without any other serious chronic health problems before the diagnosis. I could easily be part of the 30%. A bone marrow transplant is to quote my doctor "the riskiest thing we do in a hospital" and creates all sorts of scenarios for complications. No matter how good a match there is always a chance of rejection, immunosuppresent drugs leave your body totally vulnerable to life threatening infection. The convalescence after a transplant can be expected to take as long as a year with the four to six weeks in the hospital to start and months of recovery at home.The up side is a 60% chance of long term survival, or about double what you would have with just Chemo. You could just do the Chemo and risk a relapse at which point the process starts all over again and there is no choice but to do a transplant, and then you may be older and sicker. Oh what would a OUJI board say ? I have a week to make my final decision. In the meantime I've been cooking and doing body work to increase my core strength.
The pictures are of two of my sisters and I. My younger sister, a physician was kind enough to go with me to my doctor's appointment and listen to all my options and give input. She also shaved my stubbly head which was making me crazy and was going to fall out anyway. The other pictures ( I'll post on Facebook ) are my latest food creations. Trader Joe's had some boxes of Georgia peaches for sale so I made a luscious peach cobbler served warm with vanilla ice cream. The entree is a Mahi Mahi poached in a shallot white wine lime butter sauce over organic spaghetti with steamed asparagus and fresh beet greens from my garden with a tomato reduction sauce flavored with fresh herbs from the garden.
I go back into the hospital tomorrow for my third round of Chemo and will be there until next Tuesday or Wednesday. I'll post my room and phone numbers on Facebook. Most of the time I like calls and visitors but sometimes not. Call if you plan to visit and I'll tell you how it goes. Thanks everybody for all your support, it helps me tremendously !