#scanxiety

[seeingstarsseeingtheuniverse]

2 rounds left guys!!!!!

[jenthebug]

Talked on the radio for two hours, which was two hours of abject terror.

It was my job to give call information to ambulances and track them through the calls, something I’ve done before, but never in this system.

My trainer for the day, Lt. Buddy (an old friend from the old job), said I sounded “confident and competent!” 😮‍💨

Then I went to get scans. Is my cancer back? Probably not, but there’s always that chance…

Now I’m sitting in silence, trying to plan the rest of my day. My car needs tags, I need a workout, and Jay might need a ride home from school.

For now, rest and quiet is enough.

[heyitssashag]

This is the first page of my CT scan report for the people who are skeptical that I still have a fractured neck because it’s been 4 years and it “should have healed by now”.

I highlighted the part where it says I still have fractures at C5 & C6.

Why is it still broken? Because there’s still cancer in there. lol. This is why I had rods and screws placed (from my C4-T2). My vertebrae needed to be stabilized as my spine was weak from the cancer eating away at it.

It also prevents problems with the cancer interfering with my spinal cord.

The second picture is my most recent bone scan. “Increased uptake” identifies where the cancer is in the bone throughout the body. While the cancer hit my cervical spine pretty hard first, the next worst spot would be the SI joints.

Many mornings I wake up with nasty sciatica and my lower back aches. I’ve been offered palliative radiation a number of times for pain control but I’ve turned it down. Unfortunately, it won’t help to shrink the cancer and the side effects aren’t fun (ie: severe nausea, more pain, bladder issues, etc). The side effects are usually temporary though, so I may still opt for radiation as a pain reliever in the future.

I tried to feed my reports into chatGPT to create a “visual” of my spine so people could understand more (many of us are visual creatures), but it looks like a horrible mess. It’s not as bad as what it’s showing - at least, I hope not. I know I only have a couple of small tumours on my skull, ribs and arms. I especially have no idea what’s going on with the hardware in that left picture. 😂

As AI improves, I’ll likely get a better example to share. In the meantime, I hope reading the scans gives a little more idea. I’ve requested scans pics from the hospital but they put them on CD and it’s a hassle. I wish they could just upload them to the portal. Regardless, they’re hard to interpret by a lay person. So unless you’re a radiologist, they’re difficult to understand.

Anyway, to reiterate from a previous post, my scans are showing stable - which is the best part and all that really matters.

[pitiless-achilles-wept]

Better Living Through Surgery: Life with Less Cancer!

[Originally posted August 13, 2020]

Hello from Penn Hospital!

Not to worry - I haven't been here the entire time since my last post, although I did end up spending an entire week in the hospital. Right now I'm sitting in the outdoor section of the cafeteria, which might be a mistake given that I'm not allowed to eat anything until after my CT scans at 1pm. The CT scans are part of my preparing to resume treatment for the rest of the cancer that's still in my body. The last time I had chemo was June 23rd and I've now hit the sweet spot of being a month past my mastectomy (so, mostly recovered) and out of other treatment long enough that I'm not suffering side effects any longer. It feels...almost like I don't have cancer at all.

Two Surgeries for the Price of...Two!

Let me back up a bit to the surgery though. I'd like to report that everything went totally smoothly...and it sort of did! Except that I had to have two surgeries because it also sort of didn't. As usual, what happened to me was super rare (less than 1% of cases!) and I would like to submit a formal retraction of any wishes I had to be exceptional. I've read "The Monkey's Paw." I know to be careful what I wish for. (Although, actually, I'm lying because I still plan to be the exception to the median life expectancy of those with my particular type and stage of cancer. If I have to be in the 1% of cancer cases it ought to be a good thing at least once.)

I had two surgeons for the two parts of my first surgery: one for the mastectomy (removing that incredibly stubborn initial tumor) and one for a "flap reconstruction," which used my own tissue (from my stomach - free tummy tuck!) to build a replacement. When they do that second part, they also take a blood supply so that a substantial part of it is vascular surgery. The reason that the reconstruction ever fails is if something goes wrong with the blood supply. If that happens, it's nearly always (99% of the time!) within 24 hours. What happened in my case was that everything went well with the surgery, even though it took about 7 hours, and I was recovering well and quickly. I was set to go home after my third night in the hospital (so, on Thursday).

Overnight on Wednesday, however, something went wrong with the blood supply. The new tissue was filling but not draining. What they later learned, once they rushed me back into the OR, was that the vein in it had a blood clot. They were able to fix it by taking a vein from my ankle to replace it. So basically that reset the clock on my recovery so that I ended up having to stay an additional three nights, going home on Sunday. (My initial surgery had been on a Monday.) It's actually extremely lucky that I was still in the hospital, despite how sad I was at having to stay. If I had been at home, far away from experts and surgeons, the tissue probably would have died and the reconstruction would have failed. It was a close thing since I was set to go home.

Anyone who has ever been in a hospital doesn't need a reminder of how, despite everyone's best intentions it is pretty terrible. I hadn't spent a night in the hospital since I was a newborn, despite all my various treatments, so I didn't know. Now I do and I never want to go back. The hardest part is that they have to wake you up almost constantly for vitals and to assess how the blood supply is doing (listening for arterial and venus sounds). For the first day after each surgery this was every 30 MINUTES, then every HOUR, then finally (on my final night) every 2 hours. And I'm the kind of person who's AWAKE as soon as I wake up. So I essentially didn't sleep more than an hour at a time until the bitter end when a nice nurse got a nice doctor to give me some kind of sedative so that I was able to sleep through the checks. I don't have a kid, so let me just say that this level of sleep deprivation was like nothing I had ever experienced. I see why the CIA used it as a form of torture. I'm a veteran of being tired and of many different kinds of fatigue but never have I been unable to get into REM sleep for so long. I am eager to avoid it at all costs again.

I had been more worried about the boredom than the lack of rest (because, at least on paper, the hospital seems like a place where you would mostly be resting/recovering) and it was indeed very boring. I was SO tired that I wasn't able to really do anything like read a novel, knit, or even really watch TV. I did binge a few podcasts, return to some more "Buffy," and attempt to chat to my parents when they could be there. The COVID visitor policy made it even more isolating and lonely than it would usually be. I was only allowed one "designated visitor" per day so my mom and dad switched off on who that was. Visitors could only be in the room and, once you left, you were gone for the day. So, for example, it's not like my mom could say hi in the morning, pop out and get us lunch, and then come back. All visiting was consolidated for the day. That meant that I tried valiantly to be good company for a few hours, but I imagine mostly I was too exhausted to accomplish that.

I took laps around the hallway (in my mask), which was actually a big achievement especially given the four surgical drains that I had (and left the hospital with). It's amazing how quickly you can lose conditioning in your muscles...and also how exhausting it is for your body to have been, essentially, assaulted and be dealing with wounds. That said, I've been super impressed by my body's healing capacity. I got the drains out within a week for one set and 10 days for another. After that, it was much easier to feel like I was healing and returning to normal. I'll have to rebuild my abdominal muscles, since that part of the surgery involved cutting them (and a new hip-to-hip "smile" scar), and for now I still can't bend all the way over, stand up totally straight (did I ever?), or lift anything heavier than a gallon of milk (because of the reconstruction). I'll probably need some physical therapy, but the ability my body has shown to heal is incredible.

Also incredible is the difference it has made to my mood and anxiety. In the hospital, they kept asking me for my pain number (which is kind of a useless exercise anyway, in my opinion) and I kept sort of shrugging and saying "2? 3?" to their disbelief. After all, I had open wounds! I had two major surgeries! But the pain of the tumor itself (and especially of the fluid-filled cyst on top of it) had been constant, increasing, and worrying. The pain of the tumor had meant my treatment was failing me and that my cancer was getting worse. The pain of the surgery meant I was healing so I embraced it. I still get tired more easily than I expect and am sure that the recovery period for this is going to turn out to be longer than I anticipate. But it is a huge relief.

That Bastard Tumor

Now, sadly, they don't actually save your cancerous tumor for you to look at after the surgery. (Honestly sad about this. I wanted to look it in the eye!) But they did send it off to a pathologist. The results made me feel very vindicated in my persistent sense that something about this bastard of a tumor was just DIFFERENT (and worse). They found that it had areas in it that were metaplastic, meaning (essentially) that the cells are hybrid, aggressive, and chemo-resistant. Here's what Johns Hopkins has to say about it:

"Metaplastic breast cancer is a rare form of breast cancer, accounting for fewer than 1% of all breast cancers.  It differs from the more common kinds of breast cancer in both its makeup and in the way it behaves.

Like invasive ductal cancer, metaplastic breast cancer begins in the milk duct of the breast before spreading to the tissue around the duct.  What makes a metaplastic tumor different is the kinds of cells that make up the tumor.

When the cells of an invasive ductal tumor are examined under a microscope, they appear abnormal, but still look like ductal cells.  Metaplastic tumors may contain some of these breast cells, too, but they also contain cells that look like the soft tissue and connective tissue in the breast.  It is thought that the ductal cells have undergone a change in form (metaplasia) to become completely different cells, though it is not known exactly how or why this occurs.

Metaplastic breast cancers can also behave more aggressively than other kinds of breast cancers.

Metaplastic tumors are often, though not always, “triple-negative”, which means that they test negative for estrogen and progesterone receptors, as well as for the HER2/neu protein.

Metaplastic tumor cells are often found to be high grade, which means that they look very different from normal cells and are dividing rapidly.  

Metaplastic tumors are, on average, larger at diagnosis.

More often than in other kinds of breast cancer, women with metaplastic breast cancer can have metastasis (when the cancer has spread beyond the breast) and may be more likely to recur (come back later in another part of the body)."

Sounds familiar, right? I can tell you, it feels good to get that out of my body! I want to be clear, though, that it was only **some** of the tumor that was this nasty metaplastic cancer. It was, as I described it to the amusement of my surgeon, "like chocolate chips in ice cream." (Way less fun than chocolate chips, obviously.)

That is actually good news too, because it means that there's a pretty high chance that the metastatic sites are NOT this nasty form of cancer. It wasn't noted in the original biopsy back in January 2019, nor in the spinal tumor biopsy in Feburary 2019, nor in my biopsy from July 2019. Metaplastic cells are fairly distinctive so they would have been noted if they were there. At some point, metaplastic regions appeared in the bastard tumor, probably a reason that it stopped responding to treatments that worked elsewhere (including PARP inhibitors and the chemo/immuno combo that I'm currently on). If those treatments, or others, can work on the remaining sites that are NOT metaplastic it becomes much more possible to imagine living with this as a chronic disease. We won't be able to tell until I get today's scans and we see how the next 8ish weeks of treatment go. But still, I think cautious optimism is warranted.

Resting and Recovering

My parents were able to stay with me for another 10 days after I went home and it was so wonderful to have them taking care of me. It made me realize that, actually, I have done the bulk of this cancer treatment without that particular kind of support. I mean, I knew that intellectually, but the difference between having someone looking after me and not was something I almost couldn't fathom on an emotional level. They lived with me for the first 3 months after my diagnosis in 2019 but--thanks to how long was spent getting various tests and seeing doctors--that only included a few weeks of chemo. They would obviously have stayed longer--would be glad to drop everything and rush out whenever I want!--but it's been my choice to continue as much as I can with my "regular" adult life. Being forced not to try was actually quite a favor to me. I'm left with a lot of thoughts about how I ask for help, offer it, accept it (or don't), and how I feel about it. I'll save those for another time, though, and just thank both my parents and my wonderful and tireless group of friends for giving me their support in whatever ways they can.

It's almost time for me to go drink some delicious barium and get a CT (bringing me a couple steps closer to lunch), so I'll just conclude by saying that I felt so good post-surgery that I forgot, for a while, that I still had cancer at all. After all, it was that tumor that I could actually see and feel and that was causing me daily pain and anxiety. Taking it away felt like taking away all the cancer. But, of course, it's still there: in my lungs, my lymph nodes, my bones, and my liver. It's a systemic and chronic disease, but I do at least feel more like I've been given a fighting chance again.

Hope you're all doing as well as can be right now. Be well and be kind.

Love, Bex

[securityunit-ese]

Off for the CT scan and bone biopsy :c

[mourning-wolves]

Today is scan day.

We drove 3hrs to Seattle to get my bfs scans done to see if the chemo is still working. We have to drive back on Monday to get the results. We are both so nervous, it is going to be a long weekend.

I sign my papers on Tuesday to officially be his caregiver and get paid for it. Unfortunately it isn't full time, so I can't quit my job but I can drop down to part time. Which is nice because I am so burnt out. I work 8-10hr shifts and then come home and take care of him and my I have split days off which are spent at doctor's appts, chemo, therapy, etc.

I am so tired and worn out.

[jenthebug]

Good news: my cancer is stable!

Now that that's out of the way: WELP guess who has to use more PTO and see her primary.

The oncologist listened to my symptoms, gave me a full exam, ran some extra lab tests, looked at my scans, and basically said...

So we'll find out. But I'm still fucking exhausted.

No bone hurting juice, no extra scans yet, no bitch-out for lack of appointments.

But traffic was this 🚙🚗🛻🚐🛻🚚🚛🚑🛻🚓🚕🚗🚐🚌 on the way home, it took me an hour to get home, so I'm done for the night. I should put on my jammies now, fuck all this.

[jenthebug]

I'm at the scan before my oncologist appointment and I'm suddenly having HUGE anxiety.

What if there's more cancer?

What if Dr. Oncologist bitches at me for not going to appointments for six months?

What if I get Bone Hurting Juice this visit?

But seriously, what if there's more cancer? Or what if there's NOT any more cancer and all this fatigue is happening for some other reason? I seriously doubt this bout of fatigue will be solved by a pill. I just hope it's solvable.