Wouldn't it be nice just to enter a witness protection plan from bacteria and viruses? Ha!, not in the real world. We are locked down into an abyss of solitary confinement. It's really not bad so I don't want to petrify anyone of what to expect here during isolation.
Introverts will absolutely relish the idea of a week or more of blissful rejuvenation. Myself, I am looking forward to writing my blog a little more consistently and thoroughly. To eat up more time I have lugged some study material for work that require large chunks of time. That is if my foggy head will allow me to do so. Will see if that is a possibility. Between fighting the drugs, esp. chemo and steroids, I feel quite loopy and that is not a way to study and retain my readings. So, I am being optimistic that my brain will clear enough to be productive for some work in the coming week.
In full disclosure I did not know what to expect with this treatment in regards to how my body and brain would cope with the trauma it is going through. Trauma to your body it is. My wife is a professor and as such she grades constantly, I mean constantly. So I am going to use a grading system, like she does at work, here to relate to you, the reader, the grading of how I perceive my body's reaction to the treatment thus far.
Usually I like to start with an expectation of what I believe would constitute success or accomplishment of what I have set out to do. It's the norm for me to set a lower bar of expectation so when I do exceed my expectation I am not at risk of disappointment, but rather proud, and accomplished. To be clear that does not mean that I set unreasonably low expectations just so they can easily accomplished so I can falsely inflate my ego. Grade: B
Of the top I had concerns about taking High Dose Chemo Therapy day after day for 4 days. My expectation was to have nausea at the very least and likely some vomiting (hopefully not intense.) Minor nausea was my thought would be a medium probability, with some vomiting. Some of my stem cell family did suffer through this, but persevered. Being in the lucky circle of our group here I did not suffer neither the nausea or vomiting. Chalk one up for beating expectations. Grade: A
Sometimes there are issues lingering out there a person isn't aware of or didn't think would be a concern. Introducing to you Aphresis. He did a little number on me that I was unprepared for. It was not a major issue but one I was unaware could be an issue. While I was cognizant that I would go through Aphresis, to harvest the stem cells from my blood, I was naive to it having some difficulties some times. So I had not set expectations on this event. Generally, Patients will harvest enough stem cells in one setting to be able to transplant them back into your body for engraftment. So I enter the Aphresis stage naively thinking "OK they harvest my stem cells and I'll be back in my room fat, dumb, and happy" Stories are not usually that fluid and smooth. After 4 hours of harvesting my medical team informed that we were only able to collect less than half of what will be needed to transplantation. We'll start over in the morning and hopefully collect the remaining amount needed. In my mind I say "Well tomorrow we will get the remainder needed and move on, will just set me back a day. Next morning I am awaken to start again harvesting more stem cells. This is 2 days in a row, four hours each, no breaks.(They do allow you to wear a diaper if you wish). But alas I again come up short of the required stem cells for transplant. Close but no cigar as they say. Let's just do it again tomorrow!!! That afternoon I took a hard nap, unbeknownst to me it was due to second Aphresis. The third attempt is successful in harvesting over 2 million stemmies (WoooWooo) that my immune system needs for the completed transplant. Here comes the rub. My expectation, in my mind, was Aphresis was to be a non event. Whoa, 3 straight days of Aphresis really took a load out of me energy wise. During Aphresis the machine cycles your entire blood system 4 or 5 times. It does this in order to strip out the excess stem cells and bag them for storage to be returned to you later, That puts quite a strain on you body to have the blood work that many hours and be returned to your body.
The strain on me going through three straight days of Aphresis resulted in sleeping 20 hours of the 24 hour day.By far and away the expectation for Aphresis, which is normally one of the easiest steps, was greatly underestimated, Mostly because of my underestimating of what it could actually would be. Grade:D
There are some issues that I find hard to set expectations to. This next topic is one in which I didn't feel that I could get my head around easily. Its the whole specter of traveling to a different country/culture, not as a tourist, but as a patient stuck away in a hospital. The itinerary calls for a months stay. That's a long time, what if I don't meet people who I can communicate with, enjoy some free time together, maybe they are stand off-ish. The best that I could come up with is to attempt to befriend a person or two. Enjoy our stay at hospital and not be bored to tears through the complete treatment time. Expectations of great camaraderie was fairly low for me to really meet and enjoy the company of my fellow patients. Nothing could have been further from the truth. To a T every patient here has been exemplary. Everyone wants to help one another out, after all we are all in the same boat and we have the same motive to keep the boat sailing smoothly and safely. We have taken a family approach to this new environment here, the love and support is palpable in the air daily. Faces light up when we meet in the common room. Laughter is aplenty when we have our stem cell parties, and the birthday cakes and pizza's, A festive ring is in the air. My expectation on relationships, camaraderie, and humanity for one another was greatly unexpected, This topic has made the stay in a few away land very bearable,comforting and downright pleasurable. I am so thoroughly grateful for this one. I can see life long friendships within our group of warriors. Grade; A
To this point in this blog post it been discussed things in the past on this blog. We are just over the half way point of completion. Our little group here is either in isolation or being released from isolation. So there isn't much to point out on expectations or experiences on isolation for another week. Keep tuned and you will learn more about our experiences there.My individual expectation is that I may have some platelet problems that would require a transfusion, My concern for platelets are not unfounded. I was treated for AFIB and am on blood thinners. Platelets are required to clot blood. My doctor has ordered me to stop the blood thinners during engraftment. In fairness to his actions platelets should not be a concern, but a minor issue lurking in the shadows. if it were to arise. On the psychological front I may have some more difficulties. First and foremost I am not the most introverted person. Not sure how tormenting it will be to stay locked up like the "Bubble Boy" for that length of time. I've put coping strategies in place to deal with this issue. We will see how effective my strategies will play out. My expected Grade; B-
Hope you enjoy this blog entry. For the veterans I think it may conjure up some very touching memories. For the incoming patients my wish is to instill some confidence in you that being here is not some scary place and you will most likely come away with some memories that could not have been foretasted beforehand. Must call it a night, I am totally brain fried.
Till next time.
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