February 10, 2017

I missed posting an update yesterday. Just ran into bedtime, and nothing huge had changed. Now it’s bedtime again, but there’s some very exciting news to report: I have a tentative discharge date of either Monday or Tuesday (3-4 days from now)! That really feels like turning a corner.

So here’s how it goes: assuming everything continues smoothly over the weekend as far as my blood counts and lack of side-effects go, I’ll be prepped to leave the hospital and continue my treatment as an outpatient. The picc line (semi-permanent IV in my right arm) will be removed and replaced with a central port (semi-permanent IV in my chest), which is less prone to issues and doesn’t require the same degree of cleaning and re-dressing. I am told that, as with the picc line, I do not have an option to install a laser on my central port. How lame.

While again living at home, I will still come back to the hospital daily, seven days a week, for a chemotherapy infusion through that new central port. This goes on until my blood numbers look super-stable and normal, which would indicate that the cancer is completely gone from my system: full remission. If my course follows the average timeline, this would happen about two weeks from now. Could be sooner. Could be later. Just ask a statistician.

To verify full remission, I’ll get another bone marrow biopsy which, alas, is not my favorite procedure. A negative biopsy result will signal that I have completed the Induction phase of treatment. From there I move on to the Consolidation phase.

Consolidation means reducing my infusion schedule from seven days a week to only five; and alternating in a two-weeks-on, two-weeks-off cycle for some period of time. I need to read up to confirm how long that lasts and by what criteria we decide that Consolidation is done. When it is, I move on to Maintenance.

Maintenance is an even lower frequency of infusions, and can last for months or even over a year. I also need to read up more to get those details into my head.

The fantastic news is that just by getting past the first two weeks of treatment with no side effects, I have already passed the point of highest risk. My chances of a full cure are now above the 80-85% rate for the condition in general. If I reach full remission and enter Consolidation, I believe that will increase my chances even more. Relapse of this type of Leukemia seems to be fairly uncommon. Have I mentioned yet how fortunate I feel about all of this?

After some period of rest at home, I expect to ease myself back off of disability leave and back to work. Since I know I will be inclined to rush that process, I encourage anyone and everyone to remind me of the importance of recovering sufficiently before I put too much focus on my day job. Thanks in advance.

One interesting trick will be scheduling my attendance at software conferences this spring and summer. If I am still in Consolidation when a remote conference comes around, and if the conference happens to fall in one of the “off” weeks of the Consolidation cycle, no problem. But if it falls in one of the “on” weeks then I may not be able to travel to attend. But: since I need to submit talks well in advance of the actual conference dates, I may not know until it’s too late what type of week each conference will land inside. As I submit talks I will keep all the conference organizers appraised of what I do and don’t know, and we will adapt accordingly. In any case I am thrilled that my recovery looks quick enough that I won’t have to miss the whole conference season.

For those still interested in visiting me in the hospital, this weekend will make for your last, best opportunity. The kids will be mostly away on play dates, while Tricia prepares the house for my imminent return. I expect I will have more dead time than usual and I will welcome all comers as always. Just check in ahead of time with a text or a call to my cell: .

If you don’t catch me here, you can always visit me at home after my discharge. Reconnecting with people has been one of the many silver linings of this whole cancerous affair. I would love to keep it up even after I have left my IV pole and hospital gown behind.

Many, many heartfelt thanks again for all the gestures of support and love. Another silver lining of the illness is that it has so strongly reminded me of how wonderful humans really are.

Delightedly (and a bit sleepily),

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212162574806317

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