February 14, 2017

Home at last!

I was discharged from the hospital in the mid-afternoon today. After 22 days it felt positively odd to be detached from my IV pole, to don regular clothes again and to actually walk out of the building. Fairly quickly I realized that in those 22 days I had neither worn normal-weight shoes, nor climbed even a single flight of stairs. Trying to do both at the same time felt shockingly awkward and difficult. My calf muscles have definitely lost some power. Wow.

Tricia and I walked to the Midtown Global Market to grab a late-lunch/early-dinner at La Loma Tamales before driving home. Again I was surprised at how much the simple walk (of one quarter mile) wore me out. I had done nearly the same walk just on Sunday without feeling so tired; I guess it made a big difference today to be wearing real shoes and a full set of clothing, carrying a small bag, and probably walking a little faster since I wasn’t rolling my IV pole along with me. The trip was well worth it, though: yum.

Being home has felt wonderful. Aurora and Audrey were super-excited, and there was much hugging and cuddling. Schmutzig (our elder cat) also took great advantage of my newly-returned lap. Also, being home has felt very tiring in ways I didn’t fully expect. Two little school-aged dynamos of energy and attention-seeking, though delightful, do take their toll. So does the flight of steps I have to climb every time I need to use the toilet. I expect I will spend a fair bit of time now just rebuilding basic strength and stamina, and re-adjusting to a life in three dimensions. Tonight I feel exhausted, but I also look forward to taking that journey.

The surgical wounds from my central port installation are coming along nicely, but still a bit sore to touch and movement. Hugs have to land left of my center in order to avoid pressing against them, and I can’t lie down on my right side. This, too, will improve over the next few days.

As for my ongoing treatment, I came home with a sizable supply of medications, which will continue most of what the nurses administered during the last three weeks. Also I will return to Abbott Northwestern Hospital daily at 9:00 AM for my arsenic trioxide chemo-therapy infusion. Twice a week they will also take Complete Blood Count (CBC) measurements, to monitor my progress towards remission as well as to detect whether I need any more transfusions to keep things healthy.

“Daddy, do you still have cancer?”

“Yes Aurora, I do. My body is still working hard to fight it, and I am still taking medicine for it. In a couple weeks I might not have cancer any more, but we just don’t know yet.”

At the end of next week I have my first follow-up with the oncologist. That will be the 30th day of my treatment—exactly the median time to full remission for patients with my condition. Depending how I look at the time, I might get my second bone-marrow biopsy out of the deal, and might possibly be declared cancer-free and cross into the Consolidation phase of treatment. Fingers crossed that all of those things do come to pass. If not that day, they should come within another week or two thereafter.

Today is a huge day in my personal cancer journey: the first big step in getting back towards normal life again. It feels great to be back home. The unexpected exhaustion does temper that joy somewhat, but removes none of the relief I feel at being back. I can clearly see Tricia’s sense of relief as well, after holding down the fort on her own for three weeks. Seeing that in her adds immeasurably to my own relief and joy.

I also do not forget how lucky I am within the realm of cancer patients. Since my diagnosis I have had a number of people reach out to me to share their own cancer stories, both past and present. None of them has had as smooth a journey as mine has been so far. My heart goes out to them and their loved ones, and I continue to feel amazed and thankful (and yes, a bit guilty) that I and mine have been spared so much discomfort and pain.

Time again to sleep. Tonight I do so in a bed that is bigger, and in a room that is colder than I am used to from my hospital nights. But I also sleep next to a warm and loving wife for the first time this month. That is a wonderful, absolutely delightful change. Good night and Happy Valentine’s Day to my dearest partner Tricia. You have handled this sudden turn admirably, and I cannot tell you how much I love you.


This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212200158345882

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