Leukemia

Back to bad food and sleepless nights

Posted on by Dan

Well, that patience that I was talking about could have come in handy yesterday. I spiked a fever in the morning, and after consulting with the on-call oncologist, went to the emergency room. Eight hours later (most of that time spent sitting and stewing about the inefficencies of the system, lack of communication and the fact that the eight-hour wait could have been avoided if they had just admitted me like last time) I was welcomed back by the staff in the oncology ward for another stay.

So, here I am again, waiting for my blood counts to go back up, waiting for the fevers to subside.

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A little patience

Posted on by Dan

I realized it has been awhile since my last update, so for those of you still keeping tabs on what has been going on with me, here’s the scoop.

I started my second round of chemo two Mondays ago (technically it’s the first round of my consolidation treatment, but to me it’s the second time being administered chemo). I went to my new home away from home (Regions Hospital Cancer Care Center) three days in a row for a 15-minute injection of Idarubicin. There’s something disconcerting about seeing a bright orange liquid entering your body; even more disconcerting when the nurse administering the drug is wearing googles, gloves and protective gown; and, if you didn’t think the medicine was potent enough, when they suggest you flush the toilet twice during the days that follow… well, you catch my drift.

Now that the three infusions are finished we wait. My blood counts started to drop on Monday. By Wednesday I was back to being neutropenic and Friday I received another transfusion of platelets. I kind of wish I had kept track of the amount of blood products I have received over the course of my hospital stay and now during these rounds of consolidation… you could probably start measuring it in gallons. It certainly has made me a more outspoken advocate of blood donation. In fact, let me just restate my request to those of you who have asked what you could do during this time… give blood!

The silver lining in all of this is that I am still at home. As long as I don’t get an infection, I can continue to hang out and wait for the cell counts to start increasing again. But, waiting starts to become more like sitting around the house and getting grouchy. I’m not sure how Virginia puts up with me, but she does. More than that, she takes care of me so much that I feel like I’m probably getting spoiled.

So, as we make adjustments to our schedules for our tri-weekly visits to the cancer care center, wait for the marrow to start making non-mutated white blood cells again, and do a lot of other rearranging of priorities, we require patience and a little bit of flexibility. Some days are better than others, as this is not the most forgiving way of developing patience.

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Caring, Warming Blanket

Posted on by Dan

On Friday we received a very beautiful and generous gift from our friends at The Yarnery in St. Paul. Pooling together talent and stashes many of the employees contributed to this body and heart warming blanket.

Caring Blanket

It did come as a sweet surprise and we are both touched by the time and effort (and organizational prowess) that went in to creating this.

Caring Blanket

Caring Blanket

Thank you so much for this. I have already made good use of it, especially during my naps and rests during the day. I’ve definitely been needing extra covering as my body still seems to have a hard time keeping me feeling warm (even during the past 75º days, but especially now since it’s back in the 40’s). And, since I start my second round of treatment on Monday, I have a strong feeling this will be seeing a lot more use in the coming weeks.

Caring Blanket

It’s hard to pick a favorite square, they all offer interesting color and texture. I do have to say, though, the owls on the corners are a nice touch—like watchful sentries making sure the warmth stays in.

Thank you, again, for putting this together.

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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

Posted on by Dan

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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