day 44 a personal update: things are going well

Today, just a personal update. I met with my oncologist yesterday, for the regular monthly checkup to see how things are going. Then I did my taxol #5, which was uneventful. I even  managed a brief nap between the blood pressure cuff automatically squeezing my arm and a neighbor’s care taker having long, loud cell phone conversations in the hallway 🙂

The headline is that things are going well. My doctor is pleased overall with my health. The blood counts look good, I am having only minor side effects as described on day 38 which are worth watching, but aren’t a concern. This morning I am on my post-taxol “burn” – apparently this is alot like a menopause hotflash. I call it a burn, because flash doesn’t do it justice, considering it is pretty much lasts a couple of days! 

I had been keeping a list of questions to ask over the past couple of weeks, and got these answered. My health record had shown a diagnosis code for cardiac arrythmias which came from the pre-chemo EKG, and my doctor confirmed that it was not a diagnosis as such, and so nothing to worry about. 

I am having some sleep disruptions, and regularly wake up around 4:30am and only get back to sleep about half the time. Nothing unusual. Probably also a little stress ivolved in that – still processing all of this, and probably will for some time. Keeping caffeine levels down. Trying to get my work schedule under control to take the stress levels down a notch or two.

We discussed getting a dog – our family had made a plan to add a dog some time before the diagnosis, and we had since read that this might be a risk if I become immunesuppressed. I learned that this would probably be fine, as we don’t anticipate my immunosuppression to be profound enough for it to be a risk. And as my doctor said, a dog is good for the soul! I know the kids will also be pleased. 

The other thing we discussed was additional cancer screening. Getting a rare cancer relatively early (I’m in my mid-40s) and then the finding of the nodule on my thyroid (day 30) which although likely benign, is still some kind of growth, has made me look at my genes somewhat askance. While there is no evidence for an inherited cancer syndrome from my family history, and we ruled out BRCA mutations (day 29), that doesn’t mean that I don’t have a predisposition. I could be the genetic “founder” meaning that during my conception or early embryogenesis a mutation appeared, much like Queen Victoria is credited with spreading hemophilia throughout the royal houses of Europe. Important difference: I have no biological offspring, so the imperative to know is not that high, beyond knowing what my chances are of developing additional cancers. (Oh, and I am also not royal 🙂 Anyway, given my sudden loss of trust in my genome I asked about further screening that might make sense at this stage. I had thought of a thorough skin screen for melanoma, and a colonoscopy. My doctor recommended the first, and suggested the second could well wait for a few more years. So that’s the plan!

The last thing we discussed was chemo brain. Beyond surviving the cancer, for which the odds look very, very good for me, my main concern is taking a long-term hit on brain function. I think that is a unversal fear, exacerbated perhaps for those who make their living with their wits. Being an academician I feel vulnerable here. My oncologist allayed my fears largely, and said she had not had any patients who suffered a decline in cognitive function that was so profound that they weren’t able to continue their work. That is certainly good news, and reflects my wife’s experience, but everyone is different. My doctor did point out that it is a more common experience that some functions are suppressed. She mentioned a former patient who ran a daycare center and found remembering the names of her kids and their parents more difficult after chemo. Developing coping mechanisms must be part of the plan, not something that worries me as I fully express the teutonic organization gene! I have to say that I sometimes feel fuzzy, but it is hard to know whether that comes from tiredness that comes from the emotional strain and (mild) sleep disruption. 

To work against chemo brain I decided at the beginning of October to learn something new. I had a latent interest in doing small maker projects, and had been reading some websites for a while. October’s Wired issue which featured MakerBot rekindled this interest. I had also been looking at the Arduino platform which combines simple electronics and programming that allows you to make things that interact with the world, and it is ripe for an amateur with no real programming or electronics experience. So, I have been working on my first project, writing very simple code (well, patching it together from bits I can find elsewhere) soldering LEDs and having a wonderful time! Once you have cancer, you stop deferring plans, and this is part of how I have decided to live more today.

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