February 27, 2017

In addition to the antibiotic eye drops to which I alluded yesterday, I have also been placed on a regular oral antibiotic. This, as I understand it, is a precautionary step to guard against additional infections while my white blood counts are so low.

This morning I got an EKG, and am now awaiting my daily infusion. Tomorrow: bone marrow extraction and biopsy. We continue to hope for the best as all the results come in. Because I am taking antibiotics again, my doctor has again ordered blood work daily instead of twice per week. So now every infusion visit is a longer one, as we wait for the blood counts and the doctor’s go/no-go decision before even mixing the arsenic. I’m completely on board with that plan, though.

Good news tidbits since yesterday:

  • The sore inside my eyelid has already shrunk a bit and become less irritating. Looks like the antibiotics are doing their job!
  • All my vital signs continue to hang out right in the normal range.
  • I submitted a session proposal to the AgileIndy 2017 conference last night, getting it in just before the deadline. It’s a brand-new talk which is informed and inspired by my experiences since diagnosis: how my involvement in the agile software movement has changed the way I approach many aspects of life, and specifically how I credit those changes with helping me to deal with this new onslaught of uncertainty in my personal life. I don’t know if it will be accepted; if it is, I will look forward to developing and delivering it. I count this as yet another silver lining of the diagnosis.
  • Preliminary blood counts just came back, and all three values (hemoglobin, platelets, and white blood count) have increased since yesterday. This is good.

The downside of getting that conference submission in so late last night is that it stole time from my night’s sleep. To make up for that, and to make use of this longer wait for my infusion, I will keep this update short and settle in for a nice hospital nap now.

Thinking of you all, and giving thanks again for the support you have shown and continue to show.

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212327268403554

February 26, 2017

Several days of no updates now. Looks like the morning infusion slot isn’t working out quite so well after all. Here’s a bit of catch-up.

During the week I made good use of the crazy-warm weather we had in Minnesota, and walked 2-3 miles each day.  That felt really good. In the same timeframe my malaise seems to have settled down a bunch—double-good! This leads me to suspect that exercise, specifically the lack thereof, was a bigger contributor than the arsenic trioxide. Given that I can control my exercise and not my treatment regimen, this was a nice realization.

I also learned that, after all those sedentary weeks in the hospital, I have lost the ability to do some pretty basic things, such as running. When I tried to take just a couple quick steps to catch the walk signal at a crosswalk, I nearly fell down on my face. Yikes. It’s also very hard now to go up a step which is more than about eight inches high. So, even though I could probably ride my Airwheel or a bicycle, doing so would be a bit risky: I would have no way to catch myself if I lost my balance. That’s a pretty sobering realization. Looks like I have a lot of work to do this spring to get myself back into some semblance of fitness. One of my first techniques: while the girls play on the playground at Barton Open School, I walk repeatedly up and down the levels of the school’s little outdoor amphitheater. Boy, do I feel that in my muscles the next day.

A little downer related to that is that some minor infections have managed to get into my system: a tiny bit of sore throat, a sore on my lower lip, and a really weird sore inside one of my eyelids. That last one is by far the most irritating; all the others seem to have cleared up on their own after a few days, but that eye is still quite unhappy. At first I had thought it was a stye, but today a doctor looked at it (convenient that I’m in the hospital daily for my arsenic infusion!), and deemed it to be an infection of some sort. I see antibiotic eye drops in my immediate future.

Friday I had my first visit to the oncology clinic for post-discharge follow-up. The news there was good: based on the blood counts, I am likely at or near remission. The next step is to get a fresh bone marrow biopsy to find out for sure. That happens on Tuesday morning. We should get the results on Wednesday or Thursday. If all is well, then my infusion schedule drops from seven days a week to five, and I get to take two-week break from it every two weeks. That level of treatment goes on for six cycles: twenty-four weeks. Fingers crossed that the biopsy comes back as hoped. Today’s infusion of arsenic trioxide will be my 32nd. That’s exactly the median time to remission from the study upon which my treatment regimen in based.

Today Aurora and Audrey came along for my infusion, and had a blast playing with the bed and seeing nurse Melanie again. Nurse Mary Ann also got in on the act as well, and taught the girls how to use a stethoscope to listen to their bodies “making poop.” For a seven- and a five-year-old it doesn’t get much more entertaining than that!

On the home front, I have continued to need and take a lot of rest. Our community has also continued to show love and support in myriad ways, for which we remain deeply thankful. We have enjoyed getting visitors to the house. Thank you, thank you, thank you!

More causes for thankfulness: with my daily infusions I get my vital signs measured: body temperature, blood pressure, heart rate and blood oxygen level. All of those have been 100% good, every single day. Given my low white blood counts, I particularly like having no signs of fever.

Today’s infusion has just begun. Now I’m going to get this update posted and see about catching a little nap until it completes.

Hugs and warm thoughts,

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212319346085501

February 21, 2017

Lunch at Victor’s 1959 Café, on our way home from my infusion. Yum.

Today’s infusion visit took three hours—far longer than usual. Mostly that was because they took blood counts first, then waited for lab results and my doctor’s decision before beginning. This will be the normal case on Tuesdays and Fridays: the blood counts they took daily during my inpatient days are now twice per week, on those two days.

The good news: numbers were all fine, so the infusion went forward.

As the course of treatment continues, I think I am feeling the toxicity increase gradually over time. Although I was awake for most of the infusion today, I didn’t feel the mental focus to write or to do much of anything brainy. Instead I wiled my time away on little iPad games and surfing news headlines. Also, the sense of malaise that I feel afterward in the day is increasing.

This makes sense: although the body flushes out arsenic trioxide fairly quickly, it can’t keep up with daily infusions. A persistent level of arsenic will build up slightly with each day of treatment, so it makes intuitive sense (to me) that I would feel a bit crappier as each day passes. This may also be a main reason I have felt more fatigued at home than I did in the hospital: more arsenic hanging out in my body, around the clock. One more reason to be eager for remission and the shift to the consolidation phase of treatment: the two-week infusion breaks will give my body time to flush that stuff out, and hopefully let me feel a bit better. Fingers crossed that this happens in the next week. I should know more after my clinic appointment on Friday.

On the bright side, we are having yet another beautiful-weather day in Minnesota, and I will be getting outside for a walk right after the girls come home from school. For that I am thankful.

I should note: for those who have been contemplating a visit, we are and remain open and welcoming. Just call, text, or message to arrange a time that works. Generally afternoons and evenings are best. With all the warm weather we have already opened our deck for seating and socializing. We’d love to have you there.

-Markus

Update: after getting the girls out of school, I took a walk with Aurora all the way to the Lake Harriet bandshell and playground. I walked; she rode her new scooter, and loved it.
 
Total distance: about 2.5 miles (4 km). That makes it by far my longest walk since my hospitalization. Now my body is confused about whether to feel crappy from the malaise or to feel reinvigorated from the fresh air and exercise. That’s a marked improvement from how it felt beforehand. 🙂

Aurora rides her scooter way ahead of me, next to a frozen Lake Harriet.

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212274065873524

February 20, 2017

Two minor but not-fun things: chapped skin and cramps.

The itchy eyes I mentioned a couple weeks ago never did go away completely. Nor did the dryness around my lips. Both of these persist despite my taking in lots and lots of water, and my no longer being in the dry hospital air. Now I suspect that it is a side-effect of the arsenic trioxide, as it also seems to be spreading to other orifices. Daily infusions of arsenic trioxide will tend to build up over time, so it would make sense that nuisance side-effects would slowly increase over time. Fortunately it is only a nuisance: medical staff have recommended just treating the symptoms with eye drops and petroleum jelly.

It does, however, make for another reason I really look forward to achieving full remission so my dosing can be reduced.

The cramps are a bit of an oddity. Yesterday afternoon, after a period of holding some papers in my hands while reading an article (yes—paper!), both of my hands suddenly began to cramp up very quickly. I had to press them flat against a surface or against each other to stop them from painfully bunching up like little claws. Shaking them out didn’t seem to help. For a while I tried to completely avoid gripping anything small, lest the cramps return. It was quite odd, and quite inconvenient!

Around the same time, my feet also had a couple bouts of cramping. Thankfully those were less dramatic, and less odd. My feet have had a cramping habit for a while now.

Cramping doesn’t seem to be a known side-effect of any of my medications. My doc recommends making sure I stay hydrated, and using hot packs or a hot shower to relax the muscles. From my own experience I also know I can get crampy when I don’t move enough. Yesterday, for reasons I can’t explain, I never did make it out of the house for a walk. So that might be a factor.

I didn’t sleep very well last night, again having a really hard time just getting to sleep. To compensate, I spent most of my infusion time napping rather than typing. That’s why this post is coming out in the afternoon rather than the morning.

On the other hand, showering without IV tubes was just as delightful as expected. 🙂

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212266427802577

February 19, 2017

I am adjusting my update cycles, because the evening slot seems not to work as well now that I am home. By the time I finish with kid bedtime activities each night, I only want to go to sleep myself. Taking time to write up a report—though satisfying—keeps me awake later than I want. Hence my lack of posted updates since Thursday.
 
Conveniently, my daily arsenic infusions provide a perfect opportunity: every morning at 9:00 I come to the hospital, check in, take some anti-nausea pills, wait half an hour, get my arsenic infusion started, wait an hour, and finally head home again. That’s a lot of time to write, should I choose to. So here I am today.
 
We have had several days of record-breaking warmth in Minnesota: above 60º F (15.6º C) in February! This has made for some really nice opportunities for me to get out of the house and take some very pleasant walks. I have now moved well beyond my once-around-the-block-in-nineteen-minutes pace from last week. Yesterday I walked around several blocks, down to Lake Harriet, past the Rose Garden and Peace Garden in Lyndale Park, and back home again. Then I napped. Meanwhile, Audrey and Aurora delighted in riding the Razor scooters which Santa Claus gave them for Christmas. I project that our household will have two newly-competent bikers in the very near future. 🙂
 
I drove myself to the hospital this time, so that Tricia and the girls could enjoy a morning of sunshine and warmth rather than sitting cooped up with me in a hospital room. It was my first time driving a car in at least four weeks—weird!
 
Having been home for five days now, I think I am beginning to get a feel for my new cadence of energy and rest. It still involves a whole lot of rest, and that’s okay. The change in my chemotherapy timing seems to play a bigger role than I had realized. At home, my daily infusion happens at 9:00 AM; in hospital it was always at 1:00 PM. In the hospital I did not realize how tired I felt immediately after the infusion was complete: being tired in the afternoon just felt like normal after having a fairly energetic morning. At home I don’t have much of a morning: I wake up, get dressed, eat breakfast, and head to the hospital for my infusion. I get back home shortly before noon and am already feeling quite tired. So I eat a quick lunch and take a nap. By the time I wake up, the afternoon is half gone and it seems all I have done is eat, sleep and receive medication.
 
This I don’t intend as a complaint; I value rest and recovery over productivity and action. It’s more of a recognition of reality. It also means that I may miss more of the 2017 conference season than I expected, as submission deadlines loom and I have not yet managed much time to refine my proposals. So it goes.
 
Today I call out two things for which I am highly thankful: one small thing and one huge thing.
 
The small thing is that my infusion has just concluded, and the nurse has “de-accessed” my central port for the first time. This means that when I get home, for the first time in twenty-seven days I will have no intravenous tubes sticking out of any part of my body. I can shower without having to cover those tubes in plastic and tape. Woo-hoo!
 
I have mentioned the huge thing before, but now I can underscore it with some frightening numbers: I am still alive today thanks to medical research and advancement. The particular form of cancer I have is called Acute Promyelocytic Leukemia, or APL. When it was first categorized as a specific sub-condition of Leukemia, a diagnosis was almost definitely a death sentence: remissions rates were 5-14%, and the median length of survival was 3.5 weeks. My diagnosis came on January 25—exactly 3.5 weeks ago. If not for the advancements in treatment over recent decades, I would have a fifty-fifty chance of already being dead today. Even if still alive, I would have a near-certainty of dying within the next month or two. Instead, thanks to the modern treatments available, today I am well past the highest-risk period. I believe this puts me well above a ninety percent chance of coming through it and avoiding relapse. That’s rather amazing. Thank you, modern medicine!
 
Fun fact: a major component of my treatment—the use of arsenic trioxide instead of standard chemotherapy drugs—came into use via traditional Chinese medicine. Modern medical researchers in China experimented with arsenic trioxide as a cancer treatment because it played a role in traditional treatments. Through scientific experimentation, the modern doctors refined the ideas from the traditional practices, isolated its effectiveness, and turned my condition from one of the most lethal forms of cancer into one of the most treatable. Thank you, traditional medicine!
 
 
 
Hugs and warm wishes to all. If you also live where where the weather is crazy-beautiful today, please get out and enjoy it.
 
-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212254684789009

February 16, 2017

Today I was just slightly less tired than yesterday, which was nice. We went in for my daily chemotherapy infusion again, and again it went smoothly. While there we also caught up with Melanie, one of our fave nurses from my inpatient days. That was fun.

Most of the day went to napping, with a few bits of eating and doing little things around the house. Somehow these days at home seem to go by much more quickly with much less “stuff” happening than my days in the hospital. I expected exactly the opposite.

In the afternoon I surprised a lot of people by actually showing up with Tricia for a meeting of the Barton Leadership Council, which is a crew of parents, teachers and principals who lead and advise on several aspects of the community around Clara Barton Open School. That’s where Aurora and Audrey both attend. Also, it’s a totally awesome school. But I digress.

My plan had been to at least make an appearance at the meeting, and likely to leave early when I ran out of energy. As it turned out, I found the conversations engaging from start to finish, and by closing my eyes a lot of the time I managed to keep my mind active and focused for the two-hour duration. It felt really good to be back into something normal after all the not-normal of my recent weeks. Also, the whole council were wonderful in their expression of support and love. I’m pretty sure I got more hugs tonight than in all other leadership council meetings combined. 🙂 They also managed to circulate a get-well card around the room—during the meeting—without my noticing until it was all filled out at the end. Thank you, council members! That was a really sweet and touching surprise.

That’s about all for today. More tomorrow—and hopefully another small increase in my energy level.

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212224928005108

February 15, 2017

Today’s word of the day is fatigue. Waking up at home was awesome, even though I had a lot of trouble getting to sleep last night. As soon as I got up I could tell that I still felt just as exhausted today as I had yesterday evening. It did not let up all day.

In the morning, Tricia drove me back to Abbott Northwestern for my first outpatient chemotherapy infusion. It felt strangely comforting to be back at the hospital for a couple hours. The infusion went off without a hitch.

In the afternoon I took my first outdoor walk since my hospitalization. Keeping it light and simple, I only went around our block. Total distance: 0.5 km (0.3 miles). Total time: nineteen minutes. Very, very slow. I plan to do more of that every day, to build my strength back up.

Since the day was mostly about resting, I don’t have a whole lot else to report. Let’s see what tomorrow brings.

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212211402786986

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.

-Markus

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

February 13, 2017

I’m still at the hospital for one more night, but this time I know it’s my last: my discharge is scheduled for tomorrow.

In preparation for my new central port I had to fast, beginning at midnight last night. No food, and not even water. The procedure ended up not happening until after 2pm today. When I got back to my room at 4pm I was quite hungry.

I will certainly post more info after I arrive home tomorrow afternoon. 🙂

-Markus

This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212190430942703