Benji posted a brief update, on my behalf, when I came out of surgery safely. Since then, I've thought about writing several times, especially since last Monday, when I got home from the hospital. Of course, thinking about writing, and having the focus and energy to write are two different things. This afternoon has been good, more energy than the past few days. A good time for an update!
First, some of the important (and good!) details:
- the surgery went well. I was in the OR for about six hours, and came through healthy enough to go straight to a regular room, instead of intensive care. My surgeon described the surgery, with the expected complications, as "text book".
- the key decision, the choice between a "neo-bladder" (internal) and a urostomy (external), was made by the surgeon during surgery. In a key area, there was not enough salvageable tissue for the neo-bladder, so we went with the urostomy. As I've written before, that was something of a relief for me. The urostomy will take some getting used to but, for me, it beats having a lot of complications from a neo-bladder.
- And, the best news came last Friday morning, about 10 days after the surgery ... all of the biopsies taken during the surgery came back negative! This confirms what we saw in the last MRI, that there is no sign the cancer spread beyond my bladder. There are no guarantees with cancer, but that was wonderful news. I'll be monitored closely, but this news makes it that much easier to focus on healing, and the future.
To all of you who have been thinking of me, praying for me, and, in so many ways, helping care for me these past months, you've carried me a long way - the chemo and surgery are done, and the biopsy results are as encouraging as I could ask for. Thank you!!
|May 28, Checking Out!|
My six days at Brigham & Women's went well. I was in the urology ward, where the nurses, care assistants, doctors, and others were all very attuned to my needs. My big surprise was coming to fully realize how extensive a surgery this was. I'd been referring to it, and thinking of it, as a bladder surgery. No small task, but contained. Of course, I thought of it that way even as I described it as including removing a section of my intestines and building a replacement (internal or external) for the bladder. A few of the staff on the urology floor described it to me as the most extensive urological surgery that they do. For me, the truly unappreciated part was that this was intestinal surgery too -- and that it would take a bit to get my intestines working properly again. Somehow I thought I'd mostly be focused on the incision healing, and the wound around the urostomy. I've since learned better. In any case, with me up and walking every day, and some signs that my digestive system was beginning to work again, they let me know on day #5 that I would be discharged on day #6, May 28th. I appreciated that day's notice, as I took the news with mixed emotions -- it is still the early days of my recovery, and there was a lot of comfort in depth of care at the hospital. Being home, even with the care of family and friends and regular visits from home health care, would be an adjustment.
I've been home since May 28th. Seems a long time, though I haven't quite settled into a new routine yet. The advice from one of the home health nurses was pretty straightforward -- focus on rest, then hydration/diet, and exercise, in that order. I'm doing well on rest! Some days, even little things (e.g., a shower) can take a lot of energy, and leave me ready for a nap. On days with warm weather, I've been good about getting out for short walks (emphasis on short!). Short visits are energizing! Still not eating much, until the digestive system settles down -- I expected pain/discomfort from the wounds that are healing, definitely didn't anticipate that it could be trumped by digesting food! So, I've mostly been on a liquid diet, though I've tried a few more solid foods. I'm trying to take it easy, and focus on the adjustment to my new parts (I keep a few spares around), healing, hydration, starting to expand my diet, and, as the weather improves, getting back out for those walks. No need to focus on all those things at once, or without an occasional nap in between!
Perhaps the hardest thing is not the healing, but the missed moments -- Josh graduated from Prozdor (the Jewish high school supplement at Hebrew College) this past Sunday, Benji graduated from McGill, in Montreal, on Tuesday, and Sara comes home from six months in Israel this Saturday evening. I missed the ceremonies (unless you count text messages) for Josh and Benji, and probably won't be at the airport to greet Sara's flight. Shucks! On the other hand, the whole family (Fran, Adam, Benji, Sara, Josh & me!) will all be here on Sunday. Considering all that's transpired over the past few months, that is a bit like having Thanksgiving come early this year!
It is good to be home.
It is good to be home.