On January 14, I published my first medical update of 2021, which you can access here, if you missed it. Basically, the cliff’s notes version is this: pesky met in my pelvis won’t die, first biopsy attempt did not show anything actionable, and we’re trying to figure out what to do next.
One major ah-ha moment for me this past week was when I was able to speak directly with the cryoablation expert at the Duke Bone Mets Clinic, Dr. Sag. My husband and were very impressed by his empathy, caring, and ability to translate complicated medical concepts into plain, understandable language. To me, that’s the true test of being an expert — being able to translate their expertise into plain language. The light that he turned on was about the question of pain. I’ve been telling everyone that the pesky met is asymptomatic; however, some of the pain I’ve been attributing to the mets in my hips and the surgical changes from inserting the titanium rods inside my femurs, is almost certainly attributable to the pesky met per that discussion.
Understanding that I am experiencing some symptoms from the pesky met was a pretty huge ah-ha moment and something that definitely has changed some of the urgency of addressing the pesky met. As my medical oncologist said, it’s always good to get confirmation that we’re on the right track and need to deal with it rather than just watching it.
Also last week, on inauguration day, I underwent a CT planning session for SBRT and, on Friday, consulted with the interventional radiology experts as recommended by my medical oncologist to get better information and to be able to compare apples to apples when selecting the best next step for me. I haven’t had radiation since 2017 when, just after my leg surgery, the rods inside my femurs were radiated along with L2, where a large lesion was threatening to collapse that vertebrae. I vaguely remember the planning session and undergoing radiation, but I was still in the haze of being newly diagnosed and was still using a walker to get around, so I’ve forgotten a lot.
So different this time!
For the planning session, I had to completely disrobe and then they used some strategically placed pieces of cloth to preserve my modesty (for those of you who are cancer patients, you are probably laughing here since there is really no modesty in cancer treatment). Then, I laid down on the part of the CT machine that would slide in and out or up and down, whichever way they needed me to go — its usually hard and cold. However, this time, the place where I was laying had a special bag full of pellets that look like styrofoam. Once I had laid down, they confirmed I was straight, and the air was then pumped out of the bag I was laying on. By doing so, there is now a bag shaped imprint exactly like my body that I will lay on during the three (3) session of radiation treatment, if we indeed decide to proceed in that direction. Then, a large plastic sheet was draped over me and connected to the bag I was laying on by tape and other sticky areas after they had put a tube over me — no, it wasn’t duct tape, although it looked like it! Once a seal was obtained, the tube was activated to suck all the air out of the sandwich with me inside (you can see the tube covered with white cushioning in the pictures below).
In essence, I was shrink wrapped to the table. My entire body was compressed inside the bag molded to my body and covered by plastic. The purpose of this process is to keep me 100% entirely still during the radiation treatments and boy is it good at that — I couldn’t move a muscle even if I wanted to and it wasn’t super easy to breathe.
The techs only needed to give me one more radiation tattoo since they can use the other tattoos I got to cover the scars of my leg surgery to ensure that I’m in the same place each time. There is literally a grid of lasers that is embedded in the room where the radiation occurs and they use the bio markers or tattoos to ensure that I’m in the same exact place each time. The radiation physicist paid us a visit during this session to check to give the thumbs up.
When I’m nervous or feeling unsettled or there is too much seriousness, I tend to try to lighten the mood by cracking jokes. Ok, so I’m not that funny, but I can usually get a few smiles and things feel a little more comfortable. My feelings of anxiety are exacerbated when something is happening to me, to my body, and no one is explaining what they are doing or why. I’ve found that trying to be funny and failing usually reminds the people in the room that I’m a person and I don’t have to ask “what’s happening now” or “why are you doing this” too many times, which some people have interpreted as interference in the past.
Just one of my coping mechanisms that sometimes works and often just makes me sound a little like an unfunny person trying to be funny. Clearly the techs were humoring me by chuckling at my efforts, but I could not for the life of me get that physicist to crack a smile. Guess I’ll have to brush up on jokes that would resonate with a physicist — if any of you know some, feel free to include that in the comments or send me a message.
During the consult last Friday with the interventional radiology experts, we went over the need to get another biopsy (I can’t do radiation without a biopsy that shows cancer), the potential of using cryoablation to deal with the pesky met, and attempting to compare the options (cryoablation versus SBRT radiation) head to head as much as possible. I’ve not yet encountered a situation like this, where there are small (10% or lower) differences between two potential options and there isn’t a clear best option. The way I deal with decisions usually is to obtain as much concrete, objective information as possible to be able to literally list out the pros and cons — this applies to medical decisions as well as anything else.
The emotional impacts of procedures is a hard thing to quantify and are usually the last thing I enter into an equation, partly because it is truly difficult to quantify, and yet there is an emotional element to this decision. It’s hard to describe how heavy this decision weighs on me and how hard it is to see a clear path through all of the options and risks and side effects and time and different offices. As much as I am trying to make this an objective though process, I’m still sorting out how I feel as well and that can be truly heavy.
Stay tuned for the decisions and how the treatment goes!