Recovery’s Long Tail

After a pause of nearly four months since my last Cancer post, my really good news is that I am still cancer-free, and all continues to go according to plan. The sad and somewhat frustrating news is that that plan changed a little bit, and my treatment is going to last eight weeks longer than expected. This is fortunately due to an administrative error rather than a change in my health: the clinical study, upon which my treatment is based, has a tricky bit of wording which led both my doctor and me to think that it only included three eight-week cycles of arsenic trioxide and ATRA. When the doc reviewed the study last week sometime he realized that it actually prescribes four cycles, and he adjusted my course accordingly.

According to the original plan, today would have been my last infusion. I found out on Monday (9/4) that I will instead have one more round of eight weeks, spanning from early October to early November. Sigh. I had very much been looking forward to being done, and to finally building my strength and energy back toward something approaching normal. Instead I get a fresh opportunity to practice patience and positive thinking in the face of sudden change. I suppose that’s also a good thing to have.

Since my last post, the entire summer has flown by in a flash. My medical leave formally ended in late June, meaning I returned to working at least twenty hours per week. During weeks without chemo I have worked close to a full-time forty hours; during chemo weeks it has been much closer to twenty. Between sleeping, working, family time, and getting infusions, I have found very little energy for anything else such as social interactions or outings. I tried to push through the fatigue a few times, and quickly fell ill (strep throat in summer!) and then lost out on a few days completely. Ergo: no pushing myself. I still yield to my body, for the most part, when it demands rest. Which is a lot. Days and weeks tend to just flow by, and I don’t get out as much on Facebook, Twitter, or real life as I did in spring.

Bright spots in my recent months included bike rides with the kids, beach time with family, catching up with remote colleagues at the Agile2017 conference, and learning to sail in June. We might even be on the verge of buying a small, used sailboat this month! Because today’s arsenic infusion was the last before a four-week break, I do look forward to having a bit more energy for the next month or so.

Another fun note: today marks eleven years since Tricia and I were married. Eleven years of awesome! 🙂

Still I wait eagerly for the time when I can feel only the normal levels of being tired, and when I can begin to build up some level of fitness again. Just as it was eight weeks ago, that time is now eight weeks away.

-Markus

Cross-posted to Facebook: https://www.facebook.com/markus.silpala/posts/10214391283442640

Sleep and Shingles

For the last few weeks, my pattern has been to (1) say that “next week I think I’ll be up to 50% work” and then the following week (2) I sleep through all of two or three work days, and barely get in a couple hours of actual work during the remaining days, and then (3) repeat. I feel for my Leave and Disability person, who has had to jump through administrative hoops every time my return-to-work schedule changes.

My ambition to work, and disappointment at falling short, probably comes about because when I’m not dead tired I look and feel normal—complete with energy and wit. When people see me for the first time since diagnosis, the universal reaction is to say, “you look great! I wouldn’t even have known you were ill just from looking at you.“ It feels as though I should be able to work normally, yet it just doesn’t happen.

To my immense gratitude, my colleagues at Target also have a universal response when they hear of my efforts: they urge me to relax, rest, take care of myself first and worry about work when my body is ready. That universality includes management—a clear sign of a healthy work environment. To all my Target peeps: thank you! I’m doing my best to just relax and not worry.

If you inferred something new from the above paragraph, you were right: last week I physically made it into the office at Target for the first time since my diagnosis in January. I also made it in once this week. After so long away it was weird and nice to be back, also it was great to see so many colleagues again in person. Since I was only there for an hour or so each time, I would not say I contributed much value to the team’s efforts; but since my current sub-team mobs most of the time I was at least able to participate. Yay, mobbing!

Symptom-wise, last week I also got an itchy and painful sore on my forehead. My doctor suspected it was shingles and gave me an antiviral prescription to treat it. Since then, those sores have retreated somewhat and become less irritated. At the same time, I have had some other, less-visible spots break out in a rash which is both itchy and painful (and not at all fun). Going after that with an anti-fungal creme. My skin seems to be extra-sensitive all over. Any time I sweat, I get what seems to be a heat rash (splotchy-red and itchy) in every place with both sweat and constant clothing contact. While I was in bed this morning, Schmutzig the cat licked the left side of my forehead in a gambit for my attention. Her tongue left a red rash behind. Apparently I have a case of “princess skin.”

I am very pleased to report that the numbness in my feet is almost entirely gone at this point. There’s just a touch of tingling there, and even that is intermittent.

Today’s great cause for celebration is that when my arsenic infusion wraps up in less than an hour, I will have a four-week break from arsenic trioxide, from any IV infusions, and in fact from any scheduled, cancer-related clinic appointments. Four weeks! This will set a new record since my diagnosis in January. Hopefully it will also provide a respite from this crazy fatigue, and allow me to spend a little more time among work colleagues. Fingers crossed.

And that’s my recent news. It’s growing less dramatic over time, and that is a very good thing.

-Markus

Cross-posted to Facebook:

https://www.facebook.com/markus.silpala/posts/10213201383735891

More Fatigue, More Rest, and a Tough Choice

After my landing and infusion on Monday, I went home and pretty much slept the entire afternoon and evening. Tuesday I saw my oncologist, and after that the jury came back in: I pushed myself too hard with the weekend in NYC. I have done very little other than sleep since arriving home, and still my body feels like sleeping more.

My tough decision came after talking to my doctor about the wisdom of hopping onto another plane to attend another conference in another city. He did not order me not to go. The choice remained mine to make. He did, however, advise that my body has been through a lot in recent weeks and months, and that pushing it more ran the risk of disrupting my therapy—which in turn could run the risk of a cancer relapse. Although there is no way to quantify the risk, he suggested that staying home to rest was clearly the lower-risk move for my ongoing recovery and health.

Sigh.

To my great relief and gratitude, the conference organizers were more than okay with my last-minute withdrawal: aware of my recent health situation, they suggested that I had made the right choice and urged me to get rest and not to worry. Organizers of Agile & Beyond: THANK YOU! I hope to attend and present in some future year, and I have some great ideas for sessions to give there.

Had I gone through with the conference plan, I would have landed in Detroit just a few minutes ago and would now be connecting with friends and fellow speakers to share a ride to the venue. To my Agile & Beyond colleagues: have a great event and enjoy the camaraderie. I am sorry not to be with you. In particular I am sorry to miss those who weren’t in New York last weekend. Hopefully we can catch up at Agile2017 this summer.

Back on the health front, the days of solid rest seem to be paying off: I had a low-grade temp for most of the last week, but today I was down at normal again. The black circles also seem to have faded from beneath my eyes. Still I tire quickly. Having gotten the conferences behind me, my next focus (other than continuing to get enough rest) will be on really getting myself back to work.

-Markus

Cross-posted to Facebook: https://www.facebook.com/markus.silpala/posts/10213035987081078

Fatigue and Travel

Contrary to plan, last week I logged into work even less than the week before. Apparently the resumption of chemo took an immediate toll. Again. Why would this surprise me? Maybe I’m just afflicted with unreasonable hope. 🙂

The really interesting bit is that last week also marked the arrival of my first scheduled conference of the year: Agile Coach Camp US, which just wrapped up in New York City. I’ll put event details into a separate post. On the cancer topic this event is interesting because it marks the first time that I have really pushed myself to do things that require sustained energy: flying to NYC, attending Coach Camp events, visiting family and a couple of friends (sorry we couldn’t see more!), and generally being out and about for the entirety of Saturday.

To compensate, I did take a brief nap after lunch on Saturday. I opted to go back to the hotel relatively early each night rather than staying out late with friends. Sunday morning I chose to miss Morning News so that I could get an extra hour of sleep. After the event wrapped up Sunday afternoon I returned to the hotel for a longer nap, rather than enjoying New York with fellow campers or with family. Despite all of these measures, I can tell I have pushed my body a bit hard: dark circles under the eyes, lots of yawns, and the sense that I might be on the edge of catching a cold or something.

I do worry on one hand that I might be pushing myself a little harder than I ought to right now—especially given that I am flying out again in two more days to the Agile & Beyond conference in Michigan. On the other hand and on the bright side: if I come through it feeling okay, this may tell me I am ready to ramp up my work re-engagement a little faster than I thought. At least after recovering from this week. We’ll see how things go.

After I land in Minneapolis this afternoon, I head straight to the oncology clinic for another arsenic infusion.

-Markus

Cross-posted to Facebook: https://www.facebook.com/markus.silpala/posts/10213015799936412

Consolidation: Inching My Way Towards Normalcy

My two weeks off of all therapies ended today, with the beginning of my consolidation phase. Now I sit in the oncology clinic’s infusion center, again receiving arsenic trioxide through an IV tube. When people have asked me recently how I felt, I have responded that yesterday was likely the pinnacle of my physical state for a while: my body had two weeks to flush out all the toxins, and most side effects has subsided. Today the toxins flow again, so I expect to feel a bit less well over the following weeks.

My exact regimen is a little different than I had thought before. Here’s the sequence. All of it is weekdays only.

  • Two weeks of arsenic trioxide and all-trans retinoic acid (ATRA)
  • Two weeks of just arsenic trioxide
  • Two weeks of just ATRA
  • Two weeks of no treatment

That whole cycle happens three times, ending in September.

How have I felt in recent days? Not too bad. My physical strength continues to build, gradually. I can run and jump now—although still not very fast or high. I am still prone to running out of energy fairly quickly and needing a nap. My vision is still quite blurred. At night I have trouble falling asleep before midnight, and still seem to need 10-11 hours per night (even after napping). So mornings have basically been shot every day. The numbness in my feet has abated just a little bit, but is unfortunately still quite present and noticeable.

I have been logging into the systems at work every weekday, getting caught up on mail, calendars, and other things. This week I plan to increase that to a couple hours a day, hopefully getting back in sync with what the team is doing. I know a lot has changed and progressed dramatically since I went ill; at my limited rate it will take a while to really feel like I’m contributing. Unless I join up with a sub-team that does a lot of mob programming, of course. 🙂

This weekend I will be in New York City for Agile Coach Camp, and next week in Ypsilanti, MI to speak at Agile & Beyond. I really did expect to be fully back at work and living a mostly-normal life by the time those events came along. As I always say with software teams: When reality doesn’t match your plan, go with reality! During those conferences I may need to take some rest breaks, but I will be sure to be at my most alert when I give my own talk(s).

Also in the near future, I look forward to this blog having more entries in the Software category and fewer in Cancer.

Cheers and happy spring to all (or happy autumn for any southern-hemisphere peeps)!

-Markus

Cross-posted to Facebook: https://www.facebook.com/markus.silpala/posts/10212942343020035

 

Remission! And Next Steps

Another week has slipped me by. Monday’s appointment delivered the news for which we had hoped: 0.00% diseased blood cells in my latest sample. This is a major milestone, and means that I am officially in full remission. Woo-hoo!

Next step: two weeks off of treatments, then on to the Consolidation phase. To put a little extra reality onto it, this does not mean that I am completely safe yet. In the study upon which my treatment is based, the one patient death happened during Consolidation. Although the cancer is gone and likely won’t come back, the treatment still puts me at increased risk of other infections.

As a result, I am maintaining extreme caution in avoiding exposure to pathogens, and giving my body everything it wants to keep my immunity up. If I feel tired, I pause whatever I am doing and go to sleep. I don’t try to “power through” adversity as I normally might. That makes it really hard to commit to things, and that’s a major part of why I haven’t yet returned to work.

Speaking of work, my current plan is to begin working a handful of hours per day next week as my energy level permits. All of it will be remote, from home. This will afford me quick access to comfy, horizontal surfaces in case I need a rest; and it will keep me away from the nasty cold bugs that are still circulating mightily through my team at work.

Since stopping the treatment on Monday, I think I am finally feeling the side-effects begin to fade. My eyes became less itchy on Thursday, and today (Friday) I think I feel my lips becoming less chapped. I want to say that the numbness in my feet has also faded a tiny bit. But I am unsure whether that’s real or just my hope playing tricks on me. One thing for sure: all the sores and rashes around my central port are healing. That’s very nice.

On the other hand, I also have a new symptom: a splotchy, itchy, red rash on my neck, shoulders, and upper back. It feels a lot like minor sunburn: itchy all the time and sore to the touch. At first I figured it was actual sunburn despite the cloudy weather: I have a couple medications that increase sun sensitivity. After seeing a picture of it I think I’ll call it in to the clinic just to be safe.

My sleep cycles have still been super-wack, so this week has ironically had quite a bit less uptime—where I’m actually doing things instead of resting—than last week.

The really good news about remission is that I will likely never again have seven-days-a-week chemo. My side-effect profile will never be as harsh as it has been so far, because my body will have at least two days to recover after any five days of infusions and/or pills.

Looking back, it’s funny that I thought I might be returning to work by the end of February. I guess I really expected the arsenic trioxide and ATRA combination to be a lot friendlier to me than it turned out to be. I also didn’t anticipate being so cautious for so long about keeping out the infections.

That’s a wrap for this update. I look forward to the weekend, and to getting myself back into the swing of things in the coming weeks.

Cheers and hugs,

Markus

Cross-posted to Facebook:

The Last Infusion (for now)

I now await what I hope will be my final weekend infusion of arsenic trioxide. Tomorrow I have no chemo, and I visit the doc to get results of my recent molecular blood test. Hoping for 0.00% diseased cells this time around. If we get all those zeroes then all my future infusions will happen on weekdays.

Hopefully, all my side-effects will subside quickly after the infusions stop. In particular I am quite tired of the dryness and itching that I feel in lots and lots of places lately. Part of that is driven by the dry mucus membranes (eyes, nose, lips, etc), and part of it seems related to my newfound allergy to several types of skin adhesives. Either way I have had several places in recent days where I have to consciously stop myself from scratching the skin raw, and that is no fun at all.

Also high on my list of hope-this-ceases-quickly is the numbness in my feet (that’s Peripheral Neuropathy for you STEM-oriented types). I will pay close attention to that one, as it is known to sometimes become permanent.

This weekend I am super-sad to be missing the Great Boston Double-Header of the Agile Games Conference and the Mob Programming Conference. I attended and greatly enjoyed both of them last year. Shout-out to all my peeps who are enjoying them right now! #agilegames #mobprogconf

Also this weekend I am super-glad to have lovely spring weather in Minnespolis. Yesterday the whole family took a walk along Lake Harriet, and spent an hour at the completely-awesome playground uphill from the bandshell.

Here comes the arsenic. Perfect excuse to close out this post. Good cheer to all!

-Markus

Cross-posted to FB: https://www.facebook.com/markus.silpala/posts/10212753762145631

Three More Days

After this morning’s chemo infusion, I have only three more to go before my Monday follow-up with the doctor and my potential full remission. Exciting. All the same, I am trying not to get my hopes up too high as I recall the disappointment I felt last time around.

Meanwhile, my secondary symptoms continue to bother. My skin’s new sensitivity to adhesives persists even though we have found a type of dressing that seems to work fine. The issue now is the thing we put back onto the hole after pulling out the needle. Normally it would be a piece of gauze fastened with standard medical paper tape. Because that tape also causes an itchy, red reaction for me now, we’ve been using a bandage instead. Alas, yesterday I forgot to remove it for several hours after getting home from the hospital. By the time I did take it off it was stuck fast to some of the red and irritated parts of my skin—and it took some of that skin off with it. Ouch! Aurora heard me scream from the shower when the hot water first hit it, and came running to see if I was okay. What a sweet girl.

I am also feeling quite clumsy of late. Last night I took one of the Airwheels out for the first time since diagnosis, to attend a Jam Session over at DevJam HQ (which is half a mile from our house). Riding from Point A to Point B was fine. Then, while in the basement I made the questionable choice to show some people how I can ride it one-footed for a short distance at low speed. Just a quick little demo. What could go wrong?

While I am happy to say that I did not actually fall down, I am sad to say that I did lose balance, jump off, and try to grab the Airwheel before it crashed into a wall. Instead of catching it in time, I allowed it to smash and grind two of my fingers against that concrete, basement wall. This made for yet another medium-term placement of a bandage on my person—specifically on my left index finger. Nearly a day later, that spot still looks raw and has not scabbed over yet. Ugh. No one else to call out for that mistake. In fact, when I got home Tricia asked, “did I not tell you to be careful!?” In total honesty I replied with, “I don’t remember, but I strongly suspect that you did.” Did I tell you that I love you, Tricia? 🙂

Extra thanks to David Hussman and the whole DevJam crew for putting on the Jam Session and for letting me sneak into it. That was the first time since diagnosis that I  got out into the software community, and it felt really, really good to reconnect with folks. Some were already following these posts and were happy to see me in person; others were shocked to hear my cancer news for the first time. I found particularly touching when one even went out of his way to thank me for providing all these detailed updates online. Doing this gives me a lot of benefit for myself. Hearing that others get value of their own, out of the same effort, serves to thicken that particular silver lining on my bad-old cancer cloud. To quote Maui from Moana: “You’re welcome—and thank you!”

I am typing this up while pedaling on my new bike-desk, and that feels really good. Somehow I had fallen out of my regular-exercise habit since last week. Today (I hope) is the day I break that bad, lazy streak.

And this concludes my best effort at writing a short update. How did I do?

Hugs all ‘round.

-Markus

Cross-posted to FB:

https://www.facebook.com/markus.silpala/posts/10212715373705944

Mostly Just Chugging Along

Hard to believe I am already two-thirds of the way through my three-week regimen of full-time chemo. Today was day fifteen; six days left. They drew the blood this morning which will tell whether the cancer is in full remission. Follow-up appointment with the doctor is in one week (April 10). Fingers crossed.

This time around I have not been quite the star treatment recipient that I was before. All the same side effects are back, and a few new ones have joined the party. I had nausea one day, which I beat back with an “as-needed” dose of Zofran. But then I also got a persistent headache which lasted a few days; so we switched out the Zofran for Compazine. Compazine, as it turns out, includes blurred vision as one of its common side effects. And so does one of my other medications (I think it was the ATRA). At this point I am pretty sure I would fail the vision test if I had to renew my driver’s license. At the same time, I don’t want to get new glasses because I hope and expect that it will improve somewhat after the treatment ends. What to do?

Also, I have been feeling the cold all over and numbness in my feet and hands which are fairly common for chemotherapy patients. It isn’t too bad yet, but it does increase just a little each day. The literature says that this may fade away after treatment, or it may remain permanently. I am crossing some more fingers that mine is temporary.

Unrelated (I think) to the medications, but quite obnoxious in the last week or so: I seem to have developed a reaction to the standard adhesives used in medical tape and in the dressing that goes over my central IV port. After wearing it constantly for a couple months, suddenly last week I would get severe itching and a red rash within about ten minutes of when the dressing was applied. If we leave it on overnight then I wind up with a couple little open sores in among the rash. Nobody wants that. So the nurses (who remain AWESOME and wonderful) have been taking off my dressing nearly every day to give my skin a rest, and have spent a bunch of time tracking down different types of dressing, with different types of adhesives. We think we’ve finally found one that works. Even more fingers crossed that it continues to work.

Thankfully, I can still use standard retail bandages (e.g. Band Aids) without trouble. That would have been quite a hindrance if those also caused a rash. Whew!

My old friend (frenemy?) Fatigue has been back in force, and with the sort of inconsistency that I have grown to expect. Some days I have enough energy to take long walks or to tackle a long-overdue project around the house. Other days I get home from my infusion and quite literally sleep for the entire remainder of the day. Accordingly, I have now pushed back my tentative return-to-work date by a few weeks, to April 24th. That’s three weeks from today. I really, really hope I can at least get started by then if not even a week or so earlier. But I am also sticking to my discipline of prioritizing my own healing first; so we’ll just have to wait and see.

Other bummer news: my conference submissions to both AgileIndy and Agile2017 were declined. There are still some other ways to get into the Agile2017 program, and I intend to pursue those. I had really high hopes for that talk, so this is quite a bummer to me. But that’s life. It may also be the universe telling me that I don’t need the stress of putting together, rehearsing, and refining a brand-new workshop.

My last bit of bummer news: the plan year for our health insurance ended with March. As of Saturday my deductible and out-of-pocket max numbers reset to zero, so we’ll be paying out of pocket again for a while. Hmph. Still, I’ll classify that as a very special case of a First World Problem, because we are fortunate enough to have income and savings to dip into in order to cover it. Unlike so many other Americans we don’t have to fear losing our retirements savings or our house because of this illness. Why don’t I just call it a First World Problem? Why, because other than the USA the entire First World provides health care to all citizens without risk of financial ruin. This is really only an American problem.

Ooo, look: I got a tiny bit political there. That was fun.

Keeping some more positivity here, I will share one of the things that we finally got to after months of delay: getting our little “home theater” set up more properly. Tricia painted the projection wall white; I found us a good deal on a great A/V receiver (Onkyo TX-NR626), extended the wires from the four ceiling-mounted speaker which came with our new house, and hooked it all up. The end result is pretty sweet, both for watching video and for just listening. The receiver can play audio from any device vie Bluetooth, (Apple) AirPlay, or Google Cast, and it sounds great. The TV wall now shows all its 1080p scenes with sharpness and radiance, and the whole system is now ready for the 4K future, whenever that comes to our abode. We can’t wait to start having movie nights again.

One thing I have learned in the last thirteen days is that it gets much lonelier when I don’t post regular updates to Facebook, Twitter, and my blog. The periodic burst of comments, replies, chats, and other types of banter which follow each post really do provide a significant social uplift for me. So thank you all (again!) for helping to keep my spirits up. Thank you in particular to those who reached out proactively to check on me after not seeing any posts in a while. That’s very sweet of you all. 🙂

In order to avoid long pauses in the fun and socializing, I will now work on writing shorter and more-frequent updates. Those who know me and my writing style probably know that this is not an easy goal for me. Usually it takes me far longer to write something concise than to write something lengthy.

To that end, I will now post this entry without giving it my usual editorial pass. Don’t be surprised if I come back in tomorrow and fix a bunch of grammar, spelling, and style issues. If you see any errors that I haven’t fixed (today, tomorrow, or any day) please let me know with a comment or a message of some sort.

Finally, I wish a good night, good sleep, and good health to all. Cheers, friends!

-Markus

Cross-posted to Facebook: https://www.facebook.com/markus.silpala/posts/10212683686393781

Back on the Sauce

The first IV pump of my new chemotherapy regimen.

How quickly those side effects appear when the arsenic trioxide flows. I began my renewed daily infusions on Monday morning, and noticed almost immediately that I felt tired and kind of yucky all afternoon. I did finally manage to get myself outside in the evening, practicing on my new RipStik while the girls rode their scooters. Plus I got in a half hour or so on the new exercise bike. Today, however, I came home from the hospital, ate lunch, and proceeded to sleep the entire afternoon away, not getting up again until around 5:30pm.

Other side effects I felt right away: dry, itchy eyes; possibly a headache. I had a fairly big headache Monday evening, which kept me awake for a while into the night. Eventually it cleared up.

On the bright side (always gotta find those!), this does provide some interesting new information. Last time I started taking this chemo regimen I was already feeling quite sick. My low blood counts meant I was constantly fatigued, bleeding easily, and catching any infection that showed up. I also caught a fresh bout of influenza within a day of beginning the arsenic and ATRA—which brought aches, high fever, and all manner of other un-fun feelings. In great contrast, this week I begin the regimen with completely normal blood counts, no active infections, and a body which—although well weaker than normal—is at least getting a lot more movement in than it was in late January. This time, when I feel a new symptom I know that it’s coming from the treatment and not from something else that’s going on with me. As someone whose StrengthsFinder top-five includes Input, that’s a really cool feature of this repeated regimen.

It does surprise me quite a bit how quickly these effects showed up—after just one infusion! Presumably the chemo played a larger role than I realized in how I felt back when I was living in the hospital. This time around I do hope I manage to get into a good routine whereby I manage to get plenty of sleep at night, and still manage to move about and get things done in the afternoon. If I want to return to work anytime soon (which I do want to), I’ll need to do something like that.

Speaking of sleeping enough at night… Good night!

-Markus

(Cross-posted to Facebook: https://www.facebook.com/markus.silpala/posts/10212554137035128)