September 17, 2021
Turns Out A Pulmonary Embolism Is A Big Deal
I’m really, really, really tired. Who knew that can happen when you get a clogged up artery in your lung? Who knew about breathlessness, a more rapid heart rate– which makes sense, since poor Mr. Heart has to work so much harder to pump that oxygen around. I’m walking with Dear Husband every day at lunchtime and we take a very deliberate pace. I read this morning that building endurance is something a PE person needs to do. DH & I can walk a fair distance, but then I have to go to bed at 8:30, so endurance is now something to build a plan for. That, I think, is one of the realities of cancer write large. You just have to keep keep adjusting.
Get a load of this, though. They– Mayo Clinic, Johns Hopkins, other reputable sites– say that the source of a blood clot is usually somewhere in a leg. The clot eventually travels merrily through the pulmonary system until it ends up lodged in an artery or vein in the lung. But, and here is the totally coolest part: the source of a clot could also be a tumor chunk. C’mon, now, isn’t that amazing? But also, stupid cancer. It can’t keep its hands off anything related to my lungs. See the bottom of the page for more info about PE.
Working with Doctorly Ego
I anticipated an interesting visit on Wednesday (9/15), one, because there would surely be discussion of next treatment steps, and two, because CancerShrink — have I mentioned what an important part of the team he has been?– listened to me read the pulmonologist’s notes from last week’s visit and laughed– “Oh, he is really pissed,” he said. “Really?” I asked. “Ohhhh yeah,” he said. Having watched a fair amount of Grey’s Anatomy, perhaps I shouldn’t have been surprised that doctors get mad at each other. But it added to the nervousness I already felt about having gone to talk with Dr. Pulmonology. How was Dr. Oncology going to react?
Patients are encouraged to be advocates for their care. To get answers to all their questions, be assertive about posing options such as clinical trials, newly approved treatments, etc. Let me tell you, that is much easier said than done. These people basically hold your health– maybe your life– in their hands. I don’t know about you, but I do not want to piss them off. OK, OK, maybe there are some authority issues there, too (thanks for the insight, CancerShrink. NOT.). That just raised the stakes on Wednesday’s appointment. But, going forward, since cancer will be folded in to my regular life, I need to practice a new life skill. (Oh, goodie. As a friend used to say, “Another GD growth opportunity.) I would like to see a resource somewhere that spells out exactly how to approach talking about difficult topics, ask questions so that you get answers and information, etc.
Since the beginning, I’ve felt Dr. Oncology has tended to soft-pedal the hard news. She has seemed reluctant to do a deep dive into some of my questions. As I look back, I see that her initial response to an atypical patient question comes as a broad brush stroke (useless, in my opinion). Then some minutes later, she will return to it and give a much more satisfying answer. It’s been a little like dancing with an eel. I haven’t wanted to push too hard, on one hand, but on the other, information is part of my coping strategy. I think I started to dance a little more gracefully on Wednesday.
Dr. Oncology’s Response
Dr. O gave no indication that anything might have been done differently when my breathing went to hell. To be fair, I was pretty insistent that the ER was not in my plans. But at some point, doesn’t a medical professional have to push back really hard? Dunno. That’s on Ms. PA-with-the-Excellent-Shoes.
What was very interesting was the way she talked about Dr. Pulmonology’s notes as though she had been part of his planning process. She explained things about blood thinners, for example, saying that usually they put people on the for three months, maybe six. Dr. Pulmonology said a year, but she didn’t need to hear that. She asked if he were going to supervise the prednisone tapering. Here’s where I wussed out in the assertiveness department. I shrugged and made a helpless gesture with my hands, as though it had been totally out of my control. My words were clear, though. “Yes,” I said. She nodded. 👍👍👍
Then she talked a bit about the upcoming pulmonary function tests Dr. Pulmonology had ordered and how those would work. That’s where they have you do treadmill-y stuff while they measure what’s happening with your lungs. I think that will be very interesting. But why she needed to get into that…I take that as a signal of her ego glomming on to a piece of the action. To be fair, she also has been my lovely, skilled, supportive main caregiver for seven months, and has real skin in the game, so if she wants to be part of this little segment, fine. What I cared about was managing my part of the dance. I’m mostly satisfied with how I did that.
Treatment Moving Forward
I expected that Dr. Oncology’s main focus would be on treatment moving forward. I did not expect how swiftly that would unfold.
Dr. Oncology reviewed the events:
We did chemorads and started immunology.
Pneumonitis 1 happened and we stopped the PD-L1 inhibitor to get the pneumonitis under control.
We re-challenged with the PD-L1 inhibitor and Pneumonitis 2 happened in a new location in the lung, with the added bonus of a PE.
Conclusion: This immunology thing is not working for my body. “Not everybody finishes the immunology,” she said, “and maybe you got enough.” (I got about 20% of the existing treatment protocol.) This was the first signal of where the conversation was headed. (Maybe I got enough? Enough for what? To prevent recurrence? Death? I wasn’t able to focus on this small sentence until now.)
Is there anything else to be done now? Nope. (Can you imagine my silent Holy shit on hearing that?) We reviewed my EGFR mutations and options that can respond to that, but because my cancer was “unresected”– IOW, not able to be operated on– those options are not approved for me. “Somebody will have to do a study on this soon,” she observed, “and they will.” However, if anything new were to develop, the EGFR mutation offers some very targeted treatment options. “That’s a good thing,” she said.
The important thing right now is to focus on my quality of life and my values, she said. “Let’s get you back on that bicycle,” she said. But even as she mentioned my bike, a chill settled into my bones. That phrase, “focus on quality of life” echoed back to times I’ve heard that about patients being sent out to live their final months, years, maybe days. Did it feel a little like a death sentence? I think so. Do I need to work on shaking that off? HA! What do you think? (See why CancerShrink is such an invaluable part of the team?)
Now we enter the phase of “active surveillance.” A CT scan every three months to check for recurrence. Then, after a number of years, every 6 months.
“I know you won’t answer this,” I said, “But how about some odds?” “You’re right,” she said. “I won’t.” The conversation swirled away from that. She went over to the computer to do some stuff, then casually looked up. “Before all the research on treatment [I didn’t really catch all she said here], I think we might have said 50-50.” “OK, then,” I said. “OK,” she said.
There wasn’t a straightforward path to the end of the conversation. Maybe she was waiting for me to indicate I was done. I thanked her, said how safe and confident I’d felt all through the treatment. She told me they were always there, and to call any time. There was some hugging. Then we were done.
The scheduler came in to cancel all the immunotherapy appointments that had been scheduled, and to make an appointment for my surveillance CT. And I left.
I’m really tired. A little shell-shocked. And, I gotta say, I’m kind of back to the beginning.
Well, fuck.
Thanks for reading.
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More about PE (Pulmonary Embolism)
Johns Hopkins PE Brochure
Johns Hopkins PE Video
The Bummer
Pulmonary embolism (PE) recovery period or healing time differs deeply from individual to individual. The experience depends essentially on how prolonged the affected individual had the clots of blood prior to they were identified and cared for and how harsh the pulmonary embolism (PE) was. For many affected individuals recovery/ healing will take a couple of years.
Only some patients will be fortunate enough to possess a short upturn within a month. On contrary of the scope there are affected individuals who have to wait a several years for a recovery from pulmonary embolism (PE). As of the great deviation in upturn times and knowledge, slight information is there to a pulmonary embolism (PE) survivor.
There are ups and downs in recovery process for pulmonary embolism (PE). Signs will appear and leave. Talk to a physician with latest or reoccurring signs to confirm they are not new blood clots, however expect these signs to happen.
Pulmonary embolism (PE) triggers a lot of bodily damage. Recovery can be vigorous. Intense fatigue and confronts with the behaviors of daily livelihoods are normal. This may get improved as the time pass. Consult your doctor concerning ways to develop endurance.
Photos:
- Pink Pulmonary Embolism https://healthjade.net/pulmonary-embolism/
- Dancing Eels
- Graduation by IamPANAN from Pixabay
- Aggressive NOT Assertive www_slon_pics from Pixabay