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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Cooling Down

Posted on by Dan

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

Posted on by Dan

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

Posted on by Dan

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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Thank you (and update)

Posted on by Dan

Thank you for the well-wishes, prayers, good thoughts and vibes, and offers both on and off the interwebs. I’m beginning to more strongly believe that regardless of relationship, faith or even proximity the great pooling effect of all that thought and energy can provide a cushion of support upon which to rest. I am touched. I’ve also been encouranged to post updates on the blog (even if there isn’t always scratchcrafty goodness to include). So, I’ll do my best to provide you (and me) with a central spot of information (so I’m not sending out so many different versions of it in as many different e-mails or calls).

I will be spending the next month (the 1st in a series of at least three extended hospital stays) at Regions Hospital in St. Paul. Like I mentioned in my previous post, I was admitted Monday night (March 16), after a bone marrow biopsy (taken the same day) confirmed what the hematologist was suspecting with my blood results. Tuesday, after a sleepless night of vitals, bloodwork and enough plasma and other blood products to get my coagulation factors high enough to have a hickman line put in, they final were able to do that. Treatment for the leukemia actually started Monday night with the main drug ATRA (basically a high dose of Vitamin A). Chemo started on Tuesday and will run for a total of 7 days.

So far the side effects haven’t been too bothersome (although I’m told they don’t really start to hit until a week or so in). Until then, I’m doing my best to choke down the “wonderful” food they serve here and gain as much reserve energy in case I can’t eat much later on.

I’ll post some more later with a description (and photos) of my new home away from home. Knowing that my immune system is completely gone really puts the kibosh on getting out of the room, the hospital does provide some equipment to help wile away they days (including an in-room treadmill, this laptop I’m writing from, and other forms of electronic entertainment). My friends from work sent over a ton of books (thank you!), and I’ve already finished Kevin Kling’s The Dog Says How.

Thanks, again, for the outpouring of support. This is going to be a strange ride, but one which we’ll look back on not just with bewilderment, but also amazement and newfound strength.

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