I will deliver the critical news first, like a headline.
Bone Marrow test shows no cancer; all white blood cells are from donor.
That is the truly good news I have to share. That means no mixed “chimerism”. In my bone marrow, there is no trace of my old cells. It is just Mariya’s cells doing their work, leukemia free.
I can’t say it’s been easy… but considering all the scary things they tell you of the things that could go wrong, I feel so damn lucky and grateful.
I know it’s a long time. I had the intention and even the need to write. For the first week, I was teased by feeling pretty good. I thought to myself, is this it? Have I somehow escaped the side effects? I am thinking this as I am running my hand through ¼ inch of soft downy new hair. The next morning I notice most of that hair has landed on the pillow. By the next, I am once again totally bald. I was told this would happen, a result of the last chemo and radiation. No. I am not going to escape the side effects.
There followed the flinty all-encompassing period of time listed in the literature as “fatigue”. After 7 months of this, I have found there are layers of fatigue, and I am talking about one of the very bottom layers. I wanted to sleep nearly 24 hours a day, and had to fight for the ambition to do anything else but that. Standing up would make my heart race and blood pressure drop or jump to the point of feeling like I might faint (and sometimes I did.) So even getting around the house meant walk a few steps –sit, walk again, sit and then go lie down. One thing I did do for some reason that I cannot articulate, other than I needed a huge graphic story of the human condition, was watch nearly 60 hours of documentary and mini-series about World War Two, (Ken Burns: The War; Herman Wouk’s The Winds of War and War and Remembrance.)
During all this time the docs were calm. They aren’t a real communicative lot. They could have said things like –“well, of course you feel terrible, you have a stiff case of anemia!” Or, “look at all these drugs you’re taking and their side effects. Fatigue is top of the list of every one.” What they did tell me was the blood tests looked good and I showed no signs of GVHD. The only thing they worried about is the return of the CMV which should subside with antibiotics and the strengthening of my new immune system.
A few days ago, I woke knowing that I had to grit my teeth and go against the inclination to rest all day. Participating in the life of the world was a tremendous struggle at first but it’s gotten easier. Though Fatigue is still very much present, it no longer rules my life with such an iron fist. Slowly I am building stamina once again.
Eating remains a challenge. On the plus side, I have an appetite and no weird taste effects or nausea. But on the side of anorexia, I weigh 110 lbs., and my stomach has shrunk to the size of a walnut. Plus eating takes energy. The girls have been diligent; alternating stern lectures with deliberately eating in front of me, making helpful yum yum noises, and whipping up calorie and protein rich foods that are easy to get down (a shake made by Elena delivers about 700+ calories, Mariya’s cashew-based soup innocently slides more than 500 calories down my gullet and Steve’s Grand Old Diner serves up the standards, like bacon and eggs with toast and lots of butter. Since no one else eats this way that I know of, it is a bit weird to focus on trying to gain weight. I don’t have time to mess around with anything that doesn’t pack a big caloric punch or I will lose more energy than its worth.
Time for the 2nd Headline:
Mariya returns home to Tahoe, after 3 months in Seattle. Elena is going to Cuzco, Peru in March.
This week felt like closure. The graft has been successful! I may have CMV and anemia and other temporary things, but I don’t have cancer. It’s time for Mariya to return to her home and back to her life, starting with a certificate in Personal Training and moving on to a nursing degree. And we are all delighted that Elena, who put her plans to go to South America on hold when I got diagnosed, is going to Cuzco, Peru to get classroom experience and a certificate teaching English and working at a hostel. Her goal, for years has been to get perfectly fluent in Spanish, written and spoken. So, she is going, alone on an adventure and the three of us couldn’t be happier or more proud.
I am left with the simple monumental task of getting well again. Re-learning the basic skill of learning to be social, after so much time in isolation or just with family. Being able to walk enough to fill my soul. I am eager to regain the carelessness of life, not being so fragile, or so metered with my energy. Go slow, my body will remind me. This next part of the healing process opens the package of long term side effects and looks inside. I know my body and mind have taken a beating. I know I have miles to go before I feel “normal”. Just trying to get grounded and stop thinking things like “why are the pumpkins out, isn’t it still spring?” will be a big step toward belong in the world again.
Ok. More coming and in a more timely fashion. I will just end with one little happy dance and the title to one of my favorite songs: Gracious a la Vida (thanks to life).