It’s Sunday, 199 days ATN and three days til chemo-radiation.
(Ok, like the last post I’m writing this a couple weeks late. But I’m still trying to get everything done that got put off during chemo. And I’ve concluded I’m still waaaay behind on eating ice cream due to that Oxaliplatin in my chemo cocktail so yes I’ve been eating a lot of it.)
My body continues to recover from chemo, and I find an increasing urge to sleep in later. Even better the radiation crew seems to vampire-friendly and all of my appointments are in the afternoon!
On the down side my hair seems to be recovering. I’ve still got lots of soft silky hair. Along with some coarse thick hair. Having either type of hair is problematic. Having both at the same time is just unmanageable.
And now that I’m off chemo I appear to be losing a little weight. So if I die on the operating table I may have bad hair but at least I won’t be fat.
Aside from visiting with the radiation oncologist, the main prep for radiation treatment is simulation. The purpose of simulation is two-fold. One is to align the treatment machine to your body. During radiation treatment I’ll be going in every weekday and they (and frankly I) would like to minimize the setup-time. The second is to figure out exactly how (directions, patterns, dosages) the radiation will be applied.
The simulation session took about an hour, most of which was spent waiting and chatting with the nurse after she gave me two cups of water to drink. Apparently they forgot to tell me to drink the water before coming. The nurse explained that they want a full bladder so that it’ll help push organs away from the treatment site, and that I should drink two glasses (16 oz) about a half hour before each treatment session.
After downing the two glasses and waiting we started the simulation session. This involved using a special simulator, which really looked like a huge doughnut. During the simulation they’d slide me into the doughnut hole, image the tumor, and then make tattoos on my body so that they could align me on the (real) machine each day and we wouldn’t have to go through the time-consuming process of calibrating the machine to my position each day. Depending on the area being treated they sometimes use immobilization devices. In those cases casts or braces will be made which ensure the exact position each time. I guess in my case that’s not practical so they rely on several small tattoo dots.
The worst part of the simulation was being face-down on the table for 20 minutes or so. For one I usually don’t lie on my stomach so it just felt odd. Then there’s the face cradle like you find on massage tables. That’d be fine if we weren’t COVID-masking. My mask was being pushed against my face a bit which made it harder to breathe. I was double-masked (cloth over KN95) and ended up removing the cloth mask. Of course it doesn’t help that you’ve got a full bladder as well.
Oh yes I should add that to help in imaging and identify the tumor location, the radiation oncologist stopped by to insert a tube…where no tube should go. Did I mention that doctors don’t seem to know which parts of your body things go into and which parts things come out of? You’d think that at some point in all the schooling they get it’d be covered. I was assured that this was only being done during simulation and would not be done during the real treatments.
The radiation oncologist had told me it’d take about seven to ten days to get everything set up once the data from the simulation was taken.
Its In The Genes
One of the things on my To-Do list was to go through genetic counseling and testing. Basically the human genome is now understood enough that various risk factors – for cancer and other diseases – can be examined from the standpoint of your genes. I actually wasn’t aware of this until one of my friends mentioned it. He lost his wife to a cancer that perhaps could’ve been caught earlier if it was known she was susceptible and screened. And when I mentioned to my radiation oncologist that genetic testing was on my “to-do” list he called his nurse in and asked her to put in a referral to “Frank.”
After getting home I saw the appointment pop up on PAMF’s MyHealthOnline, and also that Frank was in oncology, which struck me as a little odd. I spoke with my friend who said he met with a genetic counselor, and at Palo Alto (Frank was in Fremont). I was debating whether to message Frank to clarify what I wanted, but figured I’d just go ahead. In the worst case we’d set up another appointment with a genetic counselor.
Fast forward a week and I met with Frank, who is a really nice guy and as it turns used to be my radiation oncologist’s nurse back then. He knew my medical oncologist as well and also was involved in bootstrapping the genetic counseling service at PAMF Palo Alto. So all in all he was definitely the right person to talk to!
The genetic testing is done by a company called Invitae, which has a number of testing options. Frank indicated that with respect to colorectal cancer a lot of times they don’t know why people get it, but especially in younger cases (apparently I’m still considered young), genetics can play a role. In particular there’s something called Lynch Syndrome which can make you predisposed to colorectal cancer and that can be genetically tested for. the Invitae cancer test looks at 84 gene sequences which are linked to various types of cancers. In addition if in the future additional gene sequences are identified they can be run against your sequence data.
The testing can be done against either a saliva or blood sample. Frank seemed to indicate that the blood sample was preferred, unless I had an issue with having blood drawn. My only concern is that I’ve had so many blood samples taken that I’m probably at risk of running dry. (I’m convinced that the PAMF labs are run by old-school vampires. The type that still think blood makes a good drink, perhaps over ice and with an olive. I don’t see why they need to take two full vials from me each time and suspect one is set aside for Happy Hour.)
The results will take a couple weeks to trickle in and we’ll see what my genes have to say. I wouldn’t be surprised if I got a note saying that they concluded I was 30% vampire bat.
Another thing on my to-do list was to get my COVID booster. My medical oncologist had indicated that I should wait until after chemotherapy was done and maybe a couple weeks before chemo-radiation. The reasoning is that since my immune system was depressed by chemo it wouldn’t mount any reasonable reaction to the vaccine.
I got the J&J one-shot primary vaccination, back in April, which seems to have done its job at keeping me safe. For the booster there’s some data indicating that a full dose Moderna booster provides the best protection. The fly in the data is that the booster is usually given with a half dose (50 mcg vs 100 mcg), so it’s not really clear which is better (Pfizer vs Moderna). As it turns out PAMF was giving Moderna shots so I signed up for one.
When I went in there was some discussion with the staff as they asked if I was immunocompromised and said sort of since I had just completed chemo. They kept asking if I was there for a booster and I finally said that my medical oncologist said to get a booster and said nothing about re-doing a two-shot primary vaccination. That seemed to pacify them.
When I was finally sent to a nurse to do the shot I asked her if they aspirate the needle. She seemed taken aback and said “oh no!”. I don’t think she understood that I wanted the needle to be aspirated and so asked if she could. She looked at me a bit oddly and said well she could. She then headed to talk to someone who I think was her supervisor, and they went to talk to a third individual who came back to tell me that they don’t aspirate and won’t because the CDC guidelines say not to.
For those of you not familiar with aspiration, it basically involves pulling back on the needle a little after they stick it in your arm. If the needle tip is in muscle nothing should be drawn back. But there’s always the small chance it hits a vein, in which case blood will be drawn into the syringe.
What does this have to do with getting vaccinated? Well the COVID vaccines are to be admnistered intramuscularly and not intravenously. All the clinical trials are done intramuscularly and there’s really no data indicating what happens if its intravenous. There’s increasing data that some of the rare side-effects (thromboses, mycarditis/pericarditis, etc.) may be related to the vaccine being injected intravenously by accident. They only way to know the needle tip isn’t in a vein is to aspirate.
I seriously thought about walking out of the clinic at that point. But COVID booster appointments are difficult to get and I had a short window before starting chemo-radiation. So I reluctantly let them go ahead. But I encourage all of you reading this to ask your provider to aspirate. If they’re reluctant ask them how they know they’re delivering intramuscular and not accidentally hitting a vein. As for that CDC guidance – it has nothing to do with safety and all to do with patient comfort. Aspiration takes a second or two and if the needle isn’t held still it can cause a bit of pain. But I’d rather suffer though a moment of pain than die of a rare “side-effect”.
If you’d like to know more about aspiration and COVID boosters, this video (“Poor Jab Methods Cause Of Blood Clots and Myocarditis” by Dr. Moran) gives a good overview and also some recent findings about how intravenous application of the AstraZeneca vaccine can lead to clots. Dr. John Campbell in the UK also has a YouTube channel with daily news about COVID and many about the need for aspiration.