Leukemia

Not all smooth sailing

Posted on by Dan

Well, despite the good news about my bone marrow, I still am dealing with having it newly “rebooted.” So with all the cell counts declining it was only a matter of time before I would need some medical intervention.

I was admitted back into the hospital Sunday night. Virginia actually had to call a few times (the first time we were told to take a couple of Tylenol and see them in the morning). Finally, after my temperature had reached above 103 they started to move things along, transferring a non-cancer patient to another part of the hospital, so I could have his room. I’ve since moved two more times and am back in the room that I was originally in when I first started all of this back in March (nothing like coming full circle for the last stay).

My fevers which have been pretty persistent, and in some cases quite high (so far 104.9 is the highest) are due largely in part to a bacterial infection by a strain called Gemella morbillorum. Of course the infectious disease doctors have tailored the antibiotics, but since I still have been getting fevers (although fewer and less severe) they are wondering about other possibilities.

One thing we’ve found out about our stays in the hospital is that there isn’t a whole lot of patience when it comes to seeing if a treatment is working. I’ve already had another echocardiogram to see if the bacteria has seeded in one the valves (which it hasn’t) and an x-ray of my jaw to see if there isn’t a pocket of the buggers hanging out (haven’t heard about those results, yet). Now rumors are spreading about the possibility of removing my hickman line. I’m like, “can’t we just wait a wee bit longer before doing anything rash.” The antibiotics are supposed to do the trick, right? I don’t know, it’s a little frustrating being at the mercy of some of these doctors knowing that within another week or so my white blood cell counts will start to be high enough that this won’t be an issue anymore. But, I’m not a doctor, and acknowledge that I don’t have the same understanding as they do. 

In the meantime, I’m happy that I’m starting to feel better (the last couple of days totally wiped me out) and can actually sit up for more than 30 seconds, and grateful that there are blood donors for the platelets and packed red cells that I’ve been receiving nearly every day now since Friday. It’s the little things.

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Molecular Remission

Posted on by Dan

“To detect the t(15;17) (q22;q11-21) translocation that is characteristic of acute promyelocytic leukemia, flourescent in situ hybridization (FISH) was performed. Two probes were used in the analysis; one detects the PML locus in G-band 15q22 and the second detects the RARA locus in G-band 17q21.1. The five hundred analyzable interphase nuclei showed no statistical evidence of a PML/RARA fusion signal pattern.“

That, my friends, is taken from the lab report, summarizing my bone marrow study. In other words, not only am I in remission, I am in molecular remission. I still feel like crap from last week’s chemotherapy, so the real celebration won’t begin until I can actually crack open a cold one (and I may actually wait until they remove my hickman line), but there’s no denying the wonderful feeling of relief accompanied by this news.

This morning, before leaving for the hospital, we noticed that our little monarch chrysalis was about to transform. Unfortunately, we didn’t see the butterfly emerge, but she was there waiting for us when we came home. How fitting, even though quite cliché, that we witness this final stage of metamorphosis upon our return.

Monarch Metamorphosis (Milo)

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Finally, the fun begins

Posted on by Dan

Pushing Idarubicin

It’s only a 20 cc injection of Idarubicin (pushed over the course of 15 minutes), but it certainly is potent stuff (note the gloves and blue apron—the nurse also had matching blue goggles, but she preferred not to have her photo taken). I will have two more of these over the next two days and then ready myself for the next round of fun. (By “fun” I mean a clearing out of my bone marrow (and other rapidly growing cells), which will require blood transfusions, becoming neutropenic, staying in the hospital (which they are hoping to keep at a minimum by starting me on antibiotics early and a white blood cell booster called Neulasta—both next week), and other inadvertent side effects—not that I can lose any more hair, but the nausea and sleepless nights I could probably do without.)

The good news in all of this is that this will be my final round of chemotherapy. As long as my bone marrow behaves and continues to not translocate chromosomes 17 and 15 in the retinoic acid receptor gene, I should be able to go about my business in a month or so. Of course, I think I will always have a little corner in my mind that will always wonder why, if my body got it wrong before, won’t it get it wrong again. I guess it’s a price we pay for being ever evolving creatures.

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Abundance

Posted on by Dan

What do you do when you find yourself up to the ears with extra, with more than you need? For the sake of making my point, I say there are two answers to this question. You can either hoard it, stash it away just in case you need it for when there is a shortage. Or—and, this is the one I would like to emphasize—you can create and share something new with the surplus; use it up because who really knows what the next day will bring (maybe more of the same, maybe less, maybe something completely different, or maybe nothing at all).

Why am I talking about this? Today I found out that my bone marrow is doing quite well—creating new cells and essentially bouncing back from the consolidation chemotherapy I received back in early May. The problem is that it seems to be hanging on to the white blood cells, causing a general shortage in my body.

I have a new plan for dealing with my stubborn bone marrow. I will illustrate and talk about all the good things that come about as a result of sharing, in using up the surplus that one has. I figure that by talking about it, and by acting it out (which is the fun part), that other parts of me will take notice and do the same.

The fun (and tasty) part
So, as is typical this time of year in Minnesota, we find ourselves with a surplus of rhubarb and strawberries. Sure, I can hoard them, stash ’em in the freezer for the those deep winter months. Or…

Strawberries and Rhubarb

…I can make Strawberry Rhubarb Crisp.

Strawberry Rhubarb Crisp

Granted, I’m not doing a whole lot of sharing (Virginia begs to differ), but I am using up what we have. Fresh, warm crisp today sure beats frozen fruit in the winter (although, admittedly that is a nice thing to have on waffles in mid-January—so my illustration starts to break down right about now). But, in general, I’m finding a lot of value in taking what each day brings and creating something with the surplus (be it extra energy, creative impulses, or even with less tangible things like love and forgiveness). Of course, it’s much more fun when there’s an edible result of the abundance.

Strawberry Rhubarb Crisp

Take note (and enjoy), oh body of mine.

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Three words

Posted on by Dan

Bone Marrow Biopsy

And, since we’re talking about three, this is the third one I’ve had in as many months. My blood counts are still taking their time to recover. After another blood test this morning, I knew I was going to be in for a fun afternoon when the oncologist said, “Unfortunately, we can’t see what’s going on inside of you, and your peripheral blood can only tell us so much…”

I’ll spare you the gory details (although you are welcome to read the description from the link above), but this time around I was given some premedications (both anti-anxiety and anti-pain) which worked quite effectively (and quickly) since they were administered through my hickman. When asked if the Dilaudid was working, the nurse seemed quite amused at my description of it, “Sort of feeling like a warm, fuzzy teddy bear hugging my inner chest. So, yes, I’d say it’s working.”

Pablo the Teddy Bear

So, back to no bathing for a few days. And, back to waiting… one day at a time, one day at a time.

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