I have come to consider my behavior during this transplant as if I were a spaceship in the vicinity of black hole. This astronomic phenomena is a massive star which has collapsed upon itself. We cannot ‘see” them. We only theorize their existence by observing their effects on surrounding material, such as stars. The mass of black hole is so dense that even light cannot escape, so it appears black. All matter comes within a certain distance of the star (its event horizon), it is sucked into the dense collapsed star and torn apart. Stephen Hawking, the brilliant scientist from Cambridge who is confined to a wheelchair from ALS, has written a brilliantly about them. At times the transplant process seems like a black hole.It just does not let you go, is complex, and it may gobble you up.
When I hit physical and mental bottom in December, all the troops rallied. Colleen showed a sense of urgency and concern that impressed even the clinic personal. My angle daughter, Meghan, came from Los Angeles and drove, cooked and gave me invaluable support. At that time we elected to try a change in medicine, instead of another hospitalization. This resulted in a dramatic improvement in my appetite, with a weight gain from 146 to 156 pounds in a week. I was also able to eat foods that I had not consumed for five months because of prior stomach intolerance. Food began to be absorbed, and the vomiting/diarrhea abated. The was miraculous. I got to feeling so well that I even started walking with my son in law Zach (it was a wonderful opportunity to have him all to myself, to enjoy his personality and learn what he is planning to do with his UCLA MBA ). I was not very strong, having lost a lot of muscle mass due to the five months on steroids, being malnourished, and deconditioned. Nonetheless, I knew I was on the right road. Although the graft verses host disease was probably still active, a major contributer to how badly I’d been feeling, were the medications that I had been on since August. Getting control of my symptoms also meant that I could begin to wean the steroids which produced so many side effects including muscle weakness and osteoporosis.
Two or three days prior to Christmas, I began noting swelling in my ankle. It is one that I had broken twice in the past. I waited to tell my doctors, but by the 27th my leg started to swell. The ankle felt anesthetic- like your face feels as the novocaine wears off. I went to the orthopedist on the 28th because I thought I might have a stress fracture. These are common in people on steroids as they cause loss of bone mineralization, leading to bone weakness. I also scheduled an ultrasound looking for a blood clot in the left leg.
Unfortunately, there was a clots throughout the left leg. I had suffered no trauma, and was quite surprised. The protocol for Seattle Cancer Care Alliance is for 3-6 months of self injected blood thinner for patients suffering a clot and who have cancer (we have a markedly increased chance of developing clotting). The treatment costs $240 per day and insurance does not cover it !!! I had a clot in my Vena Cava (lower abdomen) in July of 2004 during which time I was hospitalized and treated with oral blood thinners for six months (coumadin/warfarin). I was diagnosed with a lung clots (pulmonary emboli) in August 2006. This was probably incorrect, and the clot was most likely old since I developed shingles two days later to explain the pain. Interestingly, my brother, who is quite fit developed life threatening bilateral pulmonary emboli (clots) two weeks after my clot was diagnosed (he never could stand for me to get all the attention). His situation was clearly life threatening although he has completely recovered.
In addition to the clot in the leg, a CAT scan showed a new pulmonary emboli and a clot in the left jugular vein at the base of the skull. Neither I nor my physicians, have ever seen the latter occurance before. The bottom line is that blood thinning is imperative, perhaps indefinitely. This may put some of my riskier activities on hold: skiing in high risk of falling situations, mountain biking and some road biking.
I am feeling better all the time. My counts are much better. The CT shows shrinkage of my lymph nodes, with a bone marrow to be scheduled soon. Although I get full quickly, have a off taste in my mouth and have to watch my intake of fats, I am enjoying a ever widening spectrum of foods. I am also successfully weaning my steroids. My activity/strength is improving: riding stationary bike on rainy days and walking uphill for 1.5 hours on clear days.
Just when I begin to feel as if I am making progress, the black hole of transplant sucks me in again. We will just have to keep on trying. Thank you all for your help/support.