Author: Dan

Home at last

Posted on by Dan

Wednesday was the magic day. Ever since beginning chemotherapy, the routine at the hospital had been to draw blood at 6 in the morning, so by the time the doctors started making their rounds at 9 my blood counts would be in, and the course for the day could be determined. Early on, while everything was at rock bottom, I was given a variety of blood products to help boost some of the numbers (packed red blood cells for my hemoglobin, platelets for my platelets, etc…), but my white blood cell count was left to grow on its own, so that the oncologists could see what was happening with the treatment. Last weekend the numbers started to go up, slowly but surely. And, by Wednesday they had finally gone beyond the level that was considered neutropenic, thus giving me the green light to go home.

The discharge process is an interesting one. One of my nurses suggested I start making “a lot of noise” just to make sure all the coordination that needed to happen actually happens between the medical doctors, the oncologists, the infectious disease doctors and the pharmacy. It went as smoothly as possible, with the exception of the pharmacy. Apparently I was the only person in the hospital taking ATRA (Tretinoin – the main drug used to combat acute promyelocytic leukemia) and they only had enough pills to cover two doses (or 9 capsules) — enough for one day. I needed enough for a month. Not sure where they got them, but we returned to the pharmacy on Thursday and they had the remaining 261 capsules ready. (On a side note: I’m not exactly sure what I would be doing if I did not have health insurance — I found out the cost of that particular medication runs around $7,000 per month, and I’ll be on it for at least a year… do the math.)

At any rate, I’m home now. I’m mostly spending my time resting, sleeping, watching movies, eating, sleeping, sitting in the sun (nothing feels better after 31 days in a hospital room than fresh air), taking baths (as a parting gift they removed my pick line, so I am catheter free until my next round of chemo), and the best part, sleeping in my own bed (I think I can get used to not being able to raise my head and feet, having my vitals taken at all hours of the day and night, starting an i.v. at 2 a.m., etc…).

Regions Hospital, Room 8102

It’s not over, yet. The plan for the next stage includes visits to the oncologist, several days a week of lab work, commencing the next round of treatment (consolidation) — which will require another hickman inserted in my chest and more chemotherapy — reduction of white blood cells (which means becoming neutropenic again), another stay at the hospital, rinse and repeat (at least twice). But, it’s one day at a time here at the Sattler-Reimer residence. So, we are enjoying the days I do get to be at home, even if I am sleeping for most of it.

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Part of the lucky few

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I haven’t really delved into my personal depths while posting about fighting this disease, but there have been a few questions asked about how I’ve been coping with this mentally/spiritually in addition to the obvious physical coping.

I’m not a very eloquent writer, and I’m even worse at producing the right words to describe the depths of my “soul,” so to speak. I have, however, not changed much of my way of thinking about how the universe chugs along, keeping all of us in tow. And, in the act of doing so, some of us get a little beat up along the way (some worse than others). I think Annie Dillard, in her book Pilgrim at Tinker Creek, puts it best:

“I am a frayed and nibbled survivor in a fallen world, and I am getting along. I am aging and eaten and have done my share of eating too. I am not washed and beautiful, in control of a shining world in which everything fits, but instead am wandering awed about on a splintered wreck I’ve come to care for, whose gnawed trees breathe a delicate air, whose bloodied and scarred creatures are my dearest companions, and whose beauty beats and shines not in its imperfections but overwhelmingly in spite of them, under the wind-rent clouds, upstream and down. Simone Weil says simply, ‘Let us love the country of here below. It is real; it offers resistance to love.'”

To say that I am lucky is to also say that I am one of the survivors, as are you. There are plenty of reasons to keep being and doing my best, but this one stands above the rest. I’ve made it this far, others have not. You’ve made it this far, too. There may not be answers to all of the questions I have, but there is definite cause to celebrate (especially once I am stronger and out of the hospital). I will, with the help of  medical science, friends and family, and my ever-loving partner and wife, pull out of this with a few scars, but alive nonetheless.

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Cooling Down

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This past week or so (I guess it’s been at least that long) was probably the hardest. My days were basically a series of rigors (which quickly disappear with a 50 ml injection of demerol) followed by a fever spike (including all the fun that comes with a fever) and then a slow descent back to normal –all this happening 2 or 3 times a day. This seems to be par for the course for neutropenic patients, yet the medicine doctors (not the oncologists) jump at any fever and draw blood for cultures, other lab work, start an new antibiotic, order chest x-rays, anything. The oncology nurses seem more familiar with fever patterns and, as with the oncologists, are convinced that once my white blood count increases, particularly my neutrophil count, things will start to level out.

Needless to say, I’ve been feeling a bit under the weather, and haven’t even looked at the computer for the last 4 days. Details are a bit murky, as well. I’ll try to be better about more frequent posts, once my body start to cool down for a bit.

Thanks again for all the well-wishes, the meals, the books and dvds (not much of that going on right now, but there’ll be plenty of time for that in the near future), and general outpouring of generosity. It really helps.

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What you can do

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It’s been a rough week. I’ve been fighting infections for the past several days (meaning spiking fevers, having ice packs applied and being the recipient of the “big guns,” as far as antibiotics are concerned). It now looks like they’ll pull out my hickman line, as that is the most likely source. The bummer about that is that I’ll have to have the hickman reinserted for my next chemotherapy treatment. But, that won’t be for another 6 weeks or so. But, there’s nothing you can do about that.

What you can do is this:
From day one I have been the grateful recipient of the life-saving blood and blood products (plasma, cryopercipitate, platelets, and hemoglobin). I made my first blood donation last year (about this time). That tiny amount pales in comparison to the amount that I have used so far. Spread this need across the city, the state, the country and the need, to say the least, multiplies greatly. So, if you really want to do something (and qualify), please donate blood or platelets. If you live in the Twin Cities, the Red Cross has a direct relationship with Regions Hospital, and there is an option of designating me as a recipient (it’s more of an honorary designation – won’t actually go to me, but the hospital does actually keep track).

So, that’s what you can do.

ETA: The laundry list of things that I normally do around the house is being created, so those of you who’ve offered help in that specific manner may be tapped. It is tremendously appreciated.

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Tired, to say the least

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I’m forcing myself to stay upright for a little while, since my M.O. has been one of a horizontal position. The last couple of days have been a blur of sleep, vitals, blood work, mushy food, sleep, measuring pee, more sleep, and visitors (did I mention sleep?). My parents made the trek to be with me for awhile and my dad did the honors this afternoon of preemptively letting loose my mane. So, monkish I sit before this laptop, wrapped in white cotton.

Virginia has taken it upon herself to make sure I don’t lounge around in bed all day. We went for our first walk outside the room yesterday, but I made a quick retreat after seeing all manor of coughing and general illness in the public hallways. Hey, I might have roguish tendencies, but I’d rather err on the side of caution while my immune system performs a reboot. She’s also named my inspirometer Babar, and boy does he want to play all the freakin’ time.

Tonight will be the last bag of chemo for this first round (called induction), then it’s dealing with side effects (intended and unintended) and waiting for my white blood count to start to go up enough to leave.

That’s about all I’ve got energy for. Until next time… take a moment to breathe in some wonderful, outdoor, springtime air for me.

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