A Pretty Difficult Week

Challenges punctuated by appointments punctuated by delays

Thank goodness for the Disney filter! - I had a “bad face” week

Fatigue, pain, hair loss, and more of the same

This week has brought more of all the things I was already dealing with. I’ve been struggling with fatigue presumably because I’m struggling with anemia (a longstanding and now apparently permanent feature of life as a “heavily pre-treated” cancer patient). Then, I woke up on Monday also dealing with pain in my left upper abdomen and between my left shoulder and neck, but only when upon inhaling. And then there’s the hair loss - the weird gift that keeps on giving - it started 2 or 3 days after surgery and is continuing to happen, now 5+ weeks after stopping systemic treatment (a systemic treatment that was not expected to cause me to lose my hair).

I had an appointment at the sarcoma clinic Tuesday morning for blood work and to discuss next steps regarding systemic treatment. I expected to be there for two hours. But my symptoms (other than the hair loss, which has them mystified) all caused concern for a potential pulmonary embolism (i.e., life-threatening blood clot in my lungs), so the next thing I knew, I was slated for what they called a “sit-and-wait” CT scan, which is exactly what it sounds like. They tell the CT folks you need a CT even though you don’t have an appointment. And then you go over to radiology and you sit and wait until they can work you in.

Six-and-a-half hours after arriving at the hospital, I was finally free to go.

Pulmonary embolism or nah?

It was not a pulmonary embolism. This was a huge relief, since it was very unclear what exactly they would do about a pulmonary embolism, given that I’m already on therapeutic levels of blood thinners.

Having ruled out PE, however, there wasn’t anything further done to determine the reason I’m having pain in my shoulder and abdomen when I breathe in (though I should note that, by the end of the week, the pain was happening even when I wasn’t breathing in; it was happening all the time). I figure the shoulder part of the pain is referred pain from the upper abdomen. The pain is reminiscent of pain I had back in February, involving my right shoulder and right upper abdomen; that pain seemed related to liver inflammation and irritation, and after several days of agony, it subsided.

My sarcoma team agreed that my hemoglobin level, combined with my fatigue level, did call for a blood transfusion. So on Thursday, I went to the hospital for another 5 hours for that. The good news is that today (Saturday), I seem to be feeling the effects of that good blood. Woohoo!

The other good news is that after a short course of ibuprofen (which I’m not supposed to take in any kind of sustained way while on blood thinners), the pain in my shoulder and abdomen seems to be better today as well. Double woohoo!

Surgical consult

Being confronted on Tuesday with the alarming and very-real-seeming possibility of a pulmonary embolism definitely made me even more concerned than I already was about the fact that a large and growing tumor is currently compressing my femoral vein, apparently completely blocking it. I’ve been waiting for a call about a surgical consult, and this week I finally got one. I’ll be seeing the surgical oncologist on September 21. I’m hopeful that it will work out for me to have surgery to remove the primary tumor in my upper thigh. And if it’s going to happen, I’m hopeful things can get moving in that direction quickly.

Systemic treatment

As noted above, I’ve been off systemic treatment for five-and-a-half weeks now, and it is feels like living inside a bomb, which is not a fun way to live, let me assure you. It’s been troubling to know that I have to stay off of systemic treatment for radiation (which hasn’t started yet and which is unlikely to start until September 20 at the very earliest) and for surgery (which hasn’t been scheduled or even agreed to yet but which can’t be scheduled before September 21, which is when my surgical consult is, after which I will almost certainly also need a consult with a vascular surgeon). The whole situation has been pretty unsettling.

At my sarcoma appointment on Tuesday, we discussed how best to handle the systemic treatment situation. It was pretty clear pretty quickly that the option my team was suggesting was really the only viable option under the circumstances. It’s a targeted oral drug called Votrient (or pazopanib), a tyrosine kinase inhibitor (TKI) related to the TKI I was on as part of a clinical trial in late 2020 and early 2021. In that case, my main side effect was a bad case of hand-foot syndrome (which affected primarily my feet). In this case, that particular side effect should be less likely.

The most obvious side effect of this drug is that it’s supposed to turn my hair pure white. As someone who has managed to hang onto my natural hair color (albeit at a greatly reduced thickness and volume) into my 50s, I’m not super-thrilled about having my hair turn white. (Trust me, telling me that white hair will be cute on me doesn’t really soften this particular blow.). But who knows. By the time my hair starts turning white on this drug, I may not really have much left, thanks to my mystery hair loss.

There are some other decidedly unpleasant side effects that come with this drug, but the thing that makes it my best option right now is that it can be easily stopped and restarted around radiation and surgery without much of a “washout” period. So I just need to it to keep me alive long enough to get me through radiation and surgery and then we can revisit what other options might be better than this one, if there are any.

But first? First, I have to deal with that systemic cancer known as health insurance.

Health insurance headaches

I thought the hard part would be finding a viable option for a systemic treatment I could be on until radiation starts and then between radiation and a hoped-for surgery. But oh, my friends, I somehow forgot that just when it finally seems like things are going to come together, Blue Cross likes to pop up to say, “uh-uh-uh, not so fast!”

And so it was that, on a late Friday afternoon (i.e., yesterday; i.e., the last day of the week the cancer center pharmacy is open before they close for the weekend), Paul went to pick up my new cancer drug only to be told that my insurance company hadn’t approved it yet. Never mind that they’d been told by my sarcoma care team (i.e., the specialists who have actually seen me and know how to treat sarcoma and are in fact treating me for sarcoma) on Tuesday (i.e., the first day of this short week) that this was the drug I needed. They (my insurance company, who have not actually seen me and are not sarcoma specialists and are not in fact treating me for sarcoma) still hadn’t decided whether or not they would approve this drug for me.

Paul waited around for awhile for all of this to get sorted out. It showed no signs of getting sorted out and he had to go take care of other things. I eventually got a call saying that my insurance company would approve the drug for 15 days, with a $1500 copay. I have a lot of words to say about this, but none of those words are fit to print, so your imagination will have to supply them.

The pharmacist told me they had a $0 copay card for me to use, so that part wouldn’t be an issue. I will only be able to get the drug in 15-day increments, but it sounds like I can get a $0 copay card every time. Unfortunately, there was no time left for Paul to get back over there before the pharmacy closed. So the start of my new treatment is delayed by three days (i.e., till Monday, when the cancer center pharmacy reopens) thanks to my insurance.

Coming up

Today has been my best day of a bad week. I’m scheduled to preach tomorrow, and Paul has been preparing a back-up sermon all week because he was not convinced it would, could, or should happen. But if I feel tomorrow the way I do today, there is no question I’ll be up for preaching and for everything else I have planned for tomorrow. It’s amazing what a blood transfusion and a little ibuprofen can do.

Then, if all goes to plan, on Monday, I will start Votrient, and on Tuesday at 6:30am, I’ll show up at Interventional Radiology for a myelogram - where they will bathe my spinal cord in something that will cause it to light up on scans so the radiation planners will know how to spare my spinal cord from radiation. From Interventional Radiology, I will be taken to Radiation Oncology for simulation scans, to plan the actual radiation. On Wednesday, I’ll have a neurosurgical followup, to see how things look five weeks post-surgery. And at some point this week, I might get scheduled for my actual radiation treatments.

In between, I hope to just keep moving forward without too much fatigue or too much pain or much more hair loss and with as few insurance headaches as possible.

Thanks, as always, for reading along, and for loving and supporting me through it all.