Leukemia

Getting back into shape

Posted on by Dan

It is quite astounding how quickly one loses muscle and overall fitness in just a short while. My forced inactivity over the past 8 months has left me pretty flabby, short of breath and needing some serious muscle rebuilding. Bike riding seems to be a good way to start, and we have very good trails all around us (including the Gateway Trail which we can hop on three blocks from our house).

Vintage Dunelt Bike

I am fortunate to have a good friend who (besides being a good friend) is knowledgeable in servicing bikes. So, after plying him with beer and pizza, had him show me some of the basics of fixing up our bikes (they had been sitting unused for over a year or more).

Vintage Dunelt Bike

Virginia and I have two pretty basic mountain bikes, but we also had this dusty old bike sitting in the back of the garage. We took the opportunity to clean up this one as well. (It’s pretty safe to say that Virginia will most likely be abandoning the mountain bike for this beautiful vintage Dunelt 3-speed.) I’m a little jealous, but it was satisfying to be able to return this one to working order.

Vintage Dunelt Bike

Vintage Dunelt Bike

I rode for the first time yesterday, and it felt great. I was a bit jelly-legged and winded, but no pain, no gain, right? In some ways, the restoration of this old bike illustrates the transformation from an ill body to one that is back in working order. A little elbow grease, some fine tuning, a new set of tires, and wah-lah. I can’t wait until this transformation is complete.

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Untethered, at last

Posted on by Dan

Today I took another step away from cancer and towards being myself again. The hickman catheter, which has been the link between my body and my treatments for the past 5 months, was removed. All that remains is a small hole that will soon heal, leaving all but a small scar (one of the few that have been left in various parts of my body).

We’ve been anticipating this moment for awhile—it being the signal that no more treatments are anticipated. Granted, I’ll still have weekly labs for awhile, but there’s a huge difference between “monitoring” and “treating.” I think making this transition from “treated” to “monitored” requires much celebration (which we’ve been doing), and it also requires another photo of some flowers to show how happy I am.

Dahlias

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As promised, one celebratory beer

Posted on by Dan

My numbers are finally starting to come up (mostly on their own—there’s probably a small bit of Neulasta in my system that is helping out), and I’ve now gone 4 days without needing a transfusion. I don’t know, that to me seems like I’m finally moving out of the side-effects phase of my last chemotherapy treatment. So, last night I decided to “crack open a cold one” courtesy of a gift from my uncle and aunt in Oregon (Thank you! I’m saving the barley wine for when I’m feeling completely 100%).

Celebratory Beer

And, yes, that’s a veggie burger with homemade sweet potato fries in the foreground. Life is indeed returning to normal. So, cheers to that.

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Home (for good this time)

Posted on by Dan

Tuesday evening marked the end of my third (and last) hospital stay. As more and more “lasts” are reached, the more concrete it seems that I will be through with this cancer.

Lately, I’ve started to think back on the last 6 months, and have been roughly adding up all the tangible experiences and treatments that I have undergone in order to help my body resolve this illness. In some ways, the list is a good way to remind myself that this was no easy thing to go through (as if I need a reminder of that). A quick (and, by no means comprehensive) list includes the following, in no particular order:

  • 65 nights spent in the hospital
  • 2 MRIs
  • 3 CT Scans of various parts of my body
  • 1 full-body bone scan (checking for other cancer)
  • 5+ chest x-rays, and 1 x-ray of my mandible (all looking for infection)
  • 2 echocardiograms, and 1 ultrasound (checking for infection, heart function and blood clots)
  • 3 in-hospital visits to a retina specialist to confirm/diagnose retinal bleeding (due to low platelets)
  • 3 (and counting) bone marrow biopsies
  • 3 procedures to insert various catheters (both PICC and Hickman)
  • At least 300 doses (and counting) of Heparin to flush and lock my catheter (about half of those administered by Virginia)
  • 168 consecutive hours of a Cytarabine drip
  • 9 doses of Idarubicin
  • 50+ (and counting) units of platelets, packed red blood cells, cryoprecipitate and plasma (although, most of these transfusions were platelets and blood)
  • 436 (and counting) 10 mg tablets of ATRA (the main medication I’ll be on for the next year)
  • 13 injections of GCS-F
  • 2 injections of Neulasta
  • Countless other medications (mostly antibiotics and antifungals), including vancomycin, clindamycin, levofloxacin, ceftazidime, flagyl, ciprofloxacin, voriconazole, and caspofungin to name a few
  • Many doses of demerol and dilaudid (to ease rigors from the many fevers and to kill pain. Of all the drugs I was given, these remain the ones I most looked forward to, since they acted immediately and quite effectively… not to mention pleasant side effects.)
  • Countless blood draws (at least once a day while in the hospital, and every other day while out), usually for a CBC, but also to look for infections
  • Etc…

Unfortunately, the more I think about the list, the more I think I have forgotten. Although, perhaps that is a fortunate thing. I’m sure it will be good to have some sort of record of this ordeal, but I’m also beginning to feel the need to move on.

My body has survived both the disease and treatment, and I would like to take on the responsibility of making sure this experience was not in vain. What that means, I’m not exactly sure. I do know that I will not look at my future the same. To use another cliché, I have been given a “second chance” to experience the life that I have left to live in a way that honors both the illness and coming through it. I’m sure there will be plenty of adventures ahead (good and bad), things not taken for granted (as much), trips and travels, the making of arts and crafts, good food and drink, and attempting to answer the question, “What will I do that will make today worthwhile?”

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Still in one piece

Posted on by Dan

First I want to thank those of you who offered advice and experience when dealing with treatment and medical opinions. I should have been a little more clear that we are fairly comfortable with how things have gone, and we definitely pose a lot of questions to the doctors. In fact, Virginia has sort of developed a reputation with the doctors, knowing that she asks important questions (especially during the days when I’ve been at my lowest and least able to keep on top of things). Some doctors even ask her whereabouts if they happen to be in the room and she’s away. So, it’s not without our wits and rights that we face decisions about my treatment.

I am still in the hospital (this is night #10), but have improved quite steadily. On Friday I had a long discussion with the infectious disease doctor that resulted in him backing off of pulling the hickman. The decision to do that was based on my overall fever curve. I think it’s good that there isn’t just one person making decisions about my care. The hospitalist basically runs the show, but gets input from the oncologists (mainly), and if needed, the infectious disease doctors. Of course, this means having a pretty steady stream of visitors throughout the day, but that’s become so routine with me, that I hardly mind anymore. It’s still nice, though, once 5 p.m. rolls around I’ll have a relatively quiet evening without much interuption.

So, we are back to waiting for my white blood cell count to be high enough for me to fight infections on my own. I’ve started receiving a daily injection of GCS-F to help boost them, but so far they’re staying low. I went in on Sunday at 0.1 and, 10 days later, am at 0.4 (I should be at or around 1.5 or 2).

This means, of course, more waiting. But, we are quite used to that.

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