Update from Markus from February 8, 2017

I have been remiss about updating this blog for the last few days. A lot has been happening. Here is the last post from Markus from two days ago...

February 8, 2017

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.

Hugs,

-Markus

Update from Markus...

Dear Friends and Family,

Here is an update directly from Markus' FB page. We are still standing strong, one moment at at time, and one day at a time.

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,

-Markus

Markus's flu seems to be under control. He continues to respond well to the chemo treatment. Since his admittance into the hospital last Monday and the beginning of his treatment on Thursday, his white blood cell count has remained low - which is to be expected with the treatment. However, today his white blood cell count has gone up a bit, which, according to our doctor, is a good sign that the treatment is working. We gladly accept this bit of good news and are feeling positive about his treatment regimen. Thank you all for the outpouring of love and moral support. Together we will stand strong.

Curve Balls

I've heard that saying that life throws you curve balls every once in a while - oftentimes when something unwanted occurs and you have to stand strong to face it. We've just been pitched one of the shittiest curve balls...

On Monday this week Markus was admitted to Abbott Northwestern Hospital. He is doing well, but as of Wednesday he was diagnosed with acute promyelocytic leukemia (APL). As you can imagine, this is devastating news to us. We are taking it in stride, one moment at time, one day at a time. Our doctor has told us that APL is very treatable and treatment has an 80-85% success rate with treatment. Treatment is underway and he is being monitored very carefully along the way to ensure that things go well. I will explain more about his treatment down below. 

Background/how we got here: After reporting low energy and getting easily fatigued for a couple of weeks, Markus went to the doctor on Monday to see what was going on. We learned that his hemoglobin was low and it was suspected that he had internal bleeding - possibly due to an ulcer. He was sent to the hospital for admittance and for a blood transfusion. At the ER we learned that all of his blood counts were low - hemoglobin, white blood cells, and platelets - all severely low. When further tests showed that it wasn’t an internal bleed, they recommended a bone marrow biopsy. The biopsy was done on Tuesday morning. By Wednesday afternoon we had our diagnosis.

Treatment has started already. On Wednesday he was given a preliminary drug to prevent any side effects from the form of chemo treatment that he’ll begin on Thursday. It is a less invasive and least toxic form of chemo. It is called All-trans ketonic acid (ATRA). It’s a chemotherapy drug in pill form. Our doctor said that ATRA paired with arsenic trioxide (ATO), which is another chemo drug, has proven to be very successful in curing this disease.

Treatment will be administered in phases - induction phase, consolidation phase, and maintenance phase. Markus is currently in the induction phase. He will continue to to get fluids, platelets, and blood transfusions from time to time. Once he is stabilized, then he will enter the consolidation phase of treatment that will help to keep him stable and get him to the maintenance phase. The induction and consolidation phases can be as long as a few weeks (say a month or so) and then the maintenance phase can be a couple of years. 
From what we have heard from the doctors and nurses, although this is very rare, the few cases that they have seen have all had very successful outcomes. This is encouraging, and so we remain optimistic and will fight our hardest to beat this back. Markus is in good spirits and is very positive.


We welcome any help and support that you are willing/able to lend while we focus on Markus’ health. Our dear friend Clare Nieto has put together a care calendar for us. Let me know if you interested in helping out and I will share that calendar with you. Otherwise, Markus welcomes visits (send him (or me) a quick text to see if/when he is up for a visit), jokes, and moral support. He is at Abbott Northwestern Hospital in the East building in room E3065. You can also reach him by cell phone.


Please note that he is in the oncology wing now and there are a few restrictions for visitors. As of today (Friday), he has contracted influenza because of his compromised immune system. He is being treated for it. If you have not had the flu shot this year, it is recommended that you stay away. If you do get the flu shot, please wait until it is effective before you visit. If you have any symptoms of a respiratory illness, please stay away until you are well (at least three days symptom-free). You are encouraged to wear a face mask and foam in and out when you enter and leave his room. No coats/jackets in his room - you’ll have to leave your coat in the hall. No plants, flowers, or balloons. No fruits.

Thank you all for your love, friendship, and support - every little bit of it helps us to stand strong.


Tricia
tricia@silpala.com
http://facebook.com/tsilpala