- It’s Sunday evening Seattle time, six days since I got my new cells. At this point in the transplant process–with my old immune system demolished, and the graft (transplant) of the new stem cells infused but not yet engrafted–no news is good news. The last few days have not been a picnic, but the doctors and nurses all seem pleased that everything is going according to plan.
- It’s still far too early for there to be any early signs of engraftment, so all we can do is wait, trying to be patient, for engraftment. We will know that engraftment is occurring when both my white blood cell and absolute neutrophil counts start to rise. Both numbers (which indicate infection fighting capacity) have been at zero since June 18.
- My biggest challenge continues to be the mucositis, which makes it very hard to swallow, chew, etc. I’ve been using morphine to control the worst of the pain, but apparently it’s not possible to eliminate the discomfort entirely.
- I am grateful that I continue to be able to drink (ice water provides great temporary relief to my mouth) and to consume various soft foods–soggy cereal, some fruit, shakes made with milk and Carnation Instant Breakfast mix, yoghurt, chicken noodle soup, etc. It’s not a very glamorous diet, but so far I’ve been able to avoid having to use the TPN (total patient nutrition–IV bags of sugars and lipids) which can be “fed” to me via my Hickman line.
- We had one short-lived moment of concern (no doubt the first of more to come) a few days ago when I got a mild fever. Even mild fevers in an immuno-suppressed patient can indicate the start of big problems. The team boosted my antibiotics, ran various blood cultures, and the fever soon passed. Also, my blood pressure is up, likely from the cyclosporine I’m receiving, which helps to prevent graft vs. host disease. So I’ve had to start taking a BP medication as well.
- All of the morphine I’m getting means that the days pass in a dozy blur. With Lisa’s help, I’m still walking about 1.5 miles in the hallways each day. My mom has come to Seattle for a visit, and so she too is learning the finer points of walking the halls (which windows have the best views, who among my fellow patients are talkative, etc.). Caleb and the girls also visit daily. I’m lucky to have the company.
- The nights also pass in a dozy blur, made a little less pleasant by all the fluids that are going into me via the Hickman line (lots of trips to the bathroom). My kidneys are definitely having to work overtime. Despite the kidney overtime, I have gained a striking amount of fluid weight: my normal weight is about 200 pounds; this morning I weighed in at 217. The doctors assure me that this situation is only temporary.
- We’ve continued to have great seasonable weather in Seattle, and the views of Rainier from my window are spectacular. The girls will spend this week in a kayaking/rowing/sailing camp on Lake Union (a 5 min. walk from our apt.) before resuming day camp at the Hutch School.
