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. 🙂
This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212190430942703
Another day light on news, which is nice. I am scheduled for a platelet transfusion tomorrow, followed by the installation of a central port. Barring any delays in those or other surprises, I should be discharged and sent home tomorrow. Tuesday at the latest.
Tomorrow afternoon will mark exactly three weeks since I arrived at the hospital. Since then I have not set foot outside, even once. Tonight might be the last night that I sleep here. Wow.
This also means that today’s session playing on the bed-ride might have been Aurora and Audrey’s last. Whatever will they do?
This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212181313234766
A shorter update, today (I think).
The good: I finally managed to sit still long enough to watch not just one, but two entire movies from beginning to end (“Captain America: The Winter Soldier” and “Iron Man” – catching up on my Marvel superheroes). I also napped more than usual, and enjoyed another quiet-time-together visit from Tricia in the afternoon. White blood cells finally got down into the teens, which is their target. Woo-hoo!
The okay: We had a minor setback in blood numbers since yesterday. My platelets dropped back below fifty, which means I again lost my neti pot and teeth-flossing privileges (boo!). Hemoglobin also dropped below seven; that meant I got another blood transfusion to bring them back up. That low reading may also be part of why I was more tired than usual.
The big learnings: contrary to what I thought until yesterday, it’s actually okay if I still need the occasional transfusion even after I am discharged from the hospital. Even though today’s transfusion felt a bit like a setback, it turns out that it probably won’t affect my timeline for going home. Monday or Tuesday is still the plan, and that is very, very soon. 🙂
I remain amazed at the power and love that is humanity reaching out to offer support in so many—often unexpected—ways.
Hugs to all,
This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212172431452727
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),
This post originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212162574806317
I almost didn’t write an update tonight because I was too tired and opted for bed. But now I have a little bit of insomnia, and I’m taking advantage of it.
Yesterday’s platelet transfusion did the trick, in spades: Nurse Melanie won the wager in a big way, and my counts went up to triple their previous high. With that, my propensity for getting little blood blisters faded away. At least for now. All the other blood numbers continue their moderate course of “basically doing the right thing,” and thus the waiting continues.
Today brought two unexpected treats. First I got to eat not just one, but two tasty outside meals. This was courtesy of Annie and Hannah being at the Midtown Global Market for lunch and offering to bring me a little something while they were in the area (Vegan Channa Burrito from Hot Indian Cuisine, for the yum!). Thank you, Annie!
The second treat was that since Aurora and Audrey had their music lessons right after school today (guitar and ukulele, respectively), the instruments came along when they visited my room. I got a pair of little shows. Can’t complain about that. My ever-wonderful dear Tricia made the trek to La Loma Tamales to fetch my tasty dinner.
Over the last two days I have really noticed some allergy-like symptoms: itchy eyes and slight stuffiness in the nose. This is odd for me because I normally don’t have itchy eyes in winter, even when home in our house full of dust and cat hair. Hospital staff first guessed it was just from the dry hospital air, and gave me some saline eye drops with which to treat it. The drops, however, actually sting when they go in—also not normal for me when merely dry eyes are involved. I was guessing there must be some allergens in the hospital air which affect me; since my room’s isolation features were turned off the other day, now those allergens are getting into my space where before they weren’t. The doc also suggested this might be a minor side-effect of my temporarily-high white blood counts: all those extra immune cells want something to attack, so they’re inflaming my eyes and nose a little bit. He isn’t concerned about it in any case: my lungs continue to sound clear, and THAT’s where the potentially-hazardous inflammations tend to show up with my style of chemotherapy.
Of course I want to reduce or eliminate those annoying symptoms, AND of course I like to figure things out and come to know what’s up if I can. So naturally we’re running some experiments. Tonight my room’s positive-air-pressure isolation feature is back on even though I don’t technically need its protection anymore. All air now flows out from the room to the hallway. If the issue is allergens in the hall, then the symptoms should fade fairly quickly just from that change. If instead the symptoms persist, then we’ll know it’s something else going on, and we can come up with a way to prove and/or resolve that. It’s fun to be curious.
Thursday I won’t have my usual family visit because after-school activities will keep the girls away. I’ll miss seeing them, but this also means there’s a bit more of a time slot in case anyone else wants to swing by for some chats or to bring me dinner. I enjoy all visitors. Just ask about a time; I am mostly just hanging around here all day and night so it’s generally other people’s schedules that provide the constraints.
Let’s see if this sleep thing works now.
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Today my energy was up a little bit, which suggests that yesterday’s lower hemoglobin count had something to do with the fatigue—and yesterday’s blood transfusion helped to relieve it. My platelets took another little downward turn as well, so I also got a fresh transfusion of those today. A couple of nurses and Tricia and I have a betting pool going on what my platelet counts will be in tomorrow’s measurement. I hope I lose the bet, because I made the lowest wager. In any event I look forward to higher platelet counts so I can shave again without fear of excessive bleeding (yes, even from my silly electric shaver!).
I have now been in the hospital for just over two weeks, which is a pretty weird thing. Despite the little setbacks in numbers I mentioned above, all is still on track in the big picture. The doctors remain optimistic that I’m on my way to a full recovery. For now it’s mostly just a waiting, watching and wishing game. It also surprises me how the days go by without much seeming to happen. On a normal “sick day” at home I could easily sit through two movies as a way to pass the time. The best I’ve done so far in the hospital is a single movie in a day, even though I don’t seem to be doing much else.
One lovely development, though: we seem to be getting into a routine where Tricia brings the kids over right after school gets out at 2:00 PM, and we have a couple hours of just “regular” family time in my hospital room. Today it was card games: Go Fish followed by Old Maid. And lots of hugs. And lots of “I hope you come home soon, Daddy” too. They also taught me that what I thought of as a hospital bed—once the proper buttons are located and pressed—is actually a super-fun kid ride. This is a routine I can definitely live with for as long as I’m here. 🙂
Today being Tuesday, we had a babysitter at home with the kids (you ROCK, Lauren!), and Tricia brought some take-out dinner to my room for our weekly Date Night. Hospital rooms aren’t the most romantic of venues, and we were both pretty well exhausted. Despite that, it was wonderful to get a little time to just be together and process some of this strangeness without having to break up any kid fights. World Street Kitchen delivered on the culinary goods, to boot.
And that, as they say, is that. Another day of good outlook in strange circumstances. I continue to be amazed by the outpouring of love and support from seemingly every direction, and I send out heartfelt thanks to each and every gesture—no matter how large or small. They all make a difference.
Post originally published on Facebook: https://www.facebook.com/photo.php?fbid=10212134581426500&set=a.1834290623740.2113083.1434673644&type=3
Another sleepy day today. The highlight: a visit from the kiddos plus Tricia and my dad which involved hugs, snuggles, chats and a board game.
I also (just now) made a few talk submissions for the Agile2017 conference in August. Tonight is the deadline for getting submissions into the system, but I still have a few weeks to edit and refine them. Given my overall reduced energy and focus since December, I pretty much just dropped in some placeholders which will need lots of love and iteration in the coming weeks. Hopefully the conference chairs will sympathize.
Numbers-wise, my prognosis continues to look excellent. The doc said that I’m very nearly past the point of risk of complications, and he’s very happy with how I’m continuing to progress. The sleepiness may just be the chemotherapy finally beginning to catch up with my body after nearly two weeks. Still no pain; still feeling very fortunate.
One notable bummer from the day: it appears that I won’t be getting a discharge this week as hoped, but will still be in hospital for another 1-3 weeks yet. Ironically, this isn’t because I’m doing badly; it’s because I’m doing so well. Until the cancer reaches full remission, I still need daily intravenous chemotherapy, seven days a week. There are facilities in town that can do that on an outpatient basis five or six days/week, but apparently none at all that provide it on Sundays. Thus, the only “package” in town that provides the ~2 hours of IV plus observation that I need each Sunday is the same package that has me living full-time in a private hospital room with round-the-clock nursing service. Because it’s so rare for a cancer patient who needs daily infusions to also be mobile and stable enough to be at home, the market simply hasn’t provided an economical path for daily outpatient infusions. I cringe on behalf of my insurance company.
And that’s the news from ANW E3065, where all the visiting kids are cute, all the nurses and doctors are awesome, and all the patients count their lucky stars, with wonder, every day.
Bedtime for Markus. Good night and love to all.
This post originally published to Facebook: https://www.facebook.com/markus.silpala/posts/10212124508414681
Today the overall news remains good: white blood counts have peaked and begun to head back down to normal levels. This should make room for the hemoglobin and platelets to again rise towards where they ought to be. Doctors are still talking about a potential discharge from the hospital sometime this week, though we don’t know yet whether that would be early or late in the week.
The downer of the day is that I had a really hard time sleeping last night, and then didn’t feel like doing much of anything other than sleep all day today (Sunday). It’s just about bedtime for me now, and hopefully I can get into a more normal cycle again. If you’ve been missing messages, updates, or calls back from me that’s why: nothing but sleeping going on. Tomorrow should be a bit more active; I’ll try to return calls and such.
Today’s great joy was that Aurora and Audrey got to visit me, enter my room, and snuggle up on my lap for a while around mid-day. That was the first time we had had full contact in thirteen days. I look forward to lots more of it.
Sleepily (and still optimistically),
This post was originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212115416067378
We’ve been less than stellar at keeping status posts up to date around here, so here’s a summary:
I am still in the hospital, and have been since last Monday (1/23).
Most of the time I have been on some level of isolation status, party because my immune system has been so compromized, and partly because I came down with Influenza shortly after arriving. This has meant that nurses and visitors alike had to wear surgical masks in order to enter my room, and I have not been able to leave the room at all. Because both Aurora and Audrey have had colds the whole time, I have not actually been able to hug or even touch them since arriving here. That has easily been the hardest part for me. A couple days ago Tricia Silpala also fell ill, so we have also been relegated to video chats as our main means of contact.
Today’s great news: those restrictions have both been lifted. I look forward to my first walk in the halls shortly after I send this message. Alas, I still don’t get to have visits from sick people, but simply escaping the room now and then will make a world of difference.
The bigger great news is that, thus far, my body has been responding perfectly to the treatment. No pain. No nausea. No side-effects. My blood counts are all creeping steadily higher as the days go by. More than likely this means that the treatment is working, and my bone marrow is again able to produce some fresh blood cells for my body to use. Energy and immunity are both on the rise; proper blood clotting should follow very soon.
Once my platelet counts reach a certain threshold I will be allowed to leave the hospital and continue my treatment and recovery from home. Currently things are on track for that to happen some time next week.
In short, I count myself extremely fortunate. Cancer can hit anyone, any time. I did not expect it to hit me; but then no one does. It hit me in a form with high treat-ability and low discomfort. It hit me at a time when I have employment with insurance, disability pay and a strong support system. It hit me at a time when I have family and friends crawling out of every corner to offer their help, thoughts, prayers, spells, regards, comfort, company, and so many other things that help just by showing their presence. It hit me in a way that my body was well-positioned to fend off, and it hit me when I lived near a hospital with an outstanding Oncology staff, who have given me outstanding care all the way through. I literally have nothing to complain about where this is concerned; for that I am deeply thankful.
I will endeavor to keep posting updates as new information arrives. Many, many thanks to all who have expressed their concerns and wishes. It really does help.
With love and smiles,
This post was originally published on Facebook: https://www.facebook.com/markus.silpala/posts/10212093207592180