treatment

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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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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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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