If I had to summarize the three weeks since my last diagnosis and treatment update I’d say it’s been about wrapping one thing up and kicking off another.

But I guess I could say that about this whole damn process.

Let’s start with the wrap-up:

Breast Surgery

I had my post-post op appointment with my plastic surgeon. I’m cleared for baths / submersion in water. I can also lift light weights for PT….like, 2lbs.

I have some cosmetic “concerns” I addressed with her but I’ll tackle that when all this life-saving stuff is over.

Actually, maybe that’s interesting. Let’s get into it real quick. Scroll down to the next section if you don’t care about boobs.

Both of these are about Left Boob (mastectomy side):

1. There’s a little poofy part above where a nipple would be, at the top of that scar. Turns out it’s just a little bit of extra fat that can be removed in the office. I don’t understand how they can stick a needle into my boob and not puncture the implant but this is why I’m not a surgeon and why I don’t ask certain questions. 
2. Just in case this hasn’t been clear, getting an implant for a mastectomy is not like getting a regular implant. My understanding is that for a regular implant they just shove it in there with the rest of the fat. In the case of a mastectomy they remove all the fat, ducts, vessels, nerves, etc. so nothing remains. So my whole left boob is an implant. And I’ve noticed that on the top left side of this boob there’s a decent “indentation” – which is just an area of missing fat surrounded by remaining fat. Things are still shifting around so we’ll see how it turns out. There are a couple surgical options to fix it—fat grafting or adjusting the implants—but that’s a decision for much later. And, thanks to the Women’s Health and Cancer Rights Act both procedures would be covered by insurance. (PS I love this law. It’s incredible.)

Like I said, both of these are cosmetic. Therefore, they can wait while we get this life-threatening stuff out of the way.

Herceptin Pause

I had another Herceptin infusion (the breast cancer maintenance immunotherapy drug) and a new friend came with me for the first time! So fun to introduce people to the cancer center… My sense of good times has really been skewed. (But really, it is a nice place…) Still no side effects from the Herceptin-only infusions, which is nice. Maybe a little tired? But I’m always tired. And I got briefly nauseous in the car ride home but… it’s the beltway? Who knows.

I had the next Herceptin infusion scheduled for today (Monday, July 27th), the day before my LAR surgery for the rectal cancer. My breast oncologist said we’d check my blood levels and see if I was good to go. A little flag went off in my head. Seems… strange to have intense immunotherapy within the 24 hours before a major surgery? I asked a nurse during my previous infusion what she thought. She said it’d probably be fine but she’s just a nurse and can’t say. I asked the nurse that did my anesthesia pre-op (who told me to stop the typical list of things – multivitamins, magnesium, etc. etc. days before). She sorta cocked her head and was like, “I’m not sure. Ask the surgeon!” So I asked my surgeon and her whole face wrinkled and she said “Yeah… that doesn’t sound like a good idea.”

So, we’re not adding a cancer immunotherapy drug to my liquids-only diet for Monday.

Go team.

I’ll resume Herceptin infusions mid-August. It’ll be fine.

PT

I was cleared to go back. So, I got in and then I got right out. Four sessions is all I could do between clearance and the next surgery.

I was back for my left chest/shoulder because of the expander to implant swap. Same deal as last time. Limited ROM. Can’t use weight yet. Basically she did a ton of manual work which involved digging into my ribs which was just deeply unpleasant. (Ribs and arms are like besties—they gotta move together. Also, I’ve got scar tissue in there.) 

My last session with her was Friday and she sent me away with three plans:
1. Some stretches I can do while laying in a hospital bed.
2. Some stretches I can do when I’m no longer laying in a hospital bed.
3. Some upper body movements with super light weight—which is where I was about three weeks before the last surgery.

I gotta wait to be cleared by the other surgical team for any lower body work. So, peace out Bulgarian Split Squats. Was nice to see you again, albeit briefly—by which I mean it was not really nice to see you but I did it anyway.

When I was laying on my side on the PT table during my last session and she was digging into my lat and telling me about the plan, I couldn’t resist saying, “Cool. So I’m going to be doing PT because of one cancer surgery while laying in a hospital bed recovering from the other cancer surgery.” We laughed. This has now been added to the list of things that are funny, by which I mean not funny at all but this situation continues to be just insane and amusing. She said I was an “interesting medical case” for all of them. I said you’re welcome. Also, I look forward to being boring.

Acupuncture

Same deal as PT. I was in and out! I was able to get in two sessions between surgeries. I’m back at the place “on the economy” (not at the hospital). We ran through the whole list of symptoms I’ve got goin’ on but I told her I just really wanted to be “fortified” before surgery. Or, as I put it, “If I’m going to get knocked down again I want to do it from as high as possible.”

If you’ve been following along the whole time you know that’s how this arc has gone: Alli starts off super great! Gets her ass handed to her. Rehabs for four weeks and climbs up a bit. Then, gets her ass handed to her again and falls lower. Then, rehabs for four weeks and climbs up a bit, gets knocked down again, etc etc.

My goal has been to just try and climb as high as I can in these in-betweens, I guess. Gently, without overdoing it, and with movement—and sometimes food—restrictions.

Hair / Hot Flashes / Brain Fog / No period

News I keep forgetting to share but may be obvious: I haven’t had my period since March. Thanks, chemo. So we don’t know if I’m in “chemo-pause” (chemo-induced temporary menopause that can last months) or “menopause.” It’s probably the former. The good news is, my period can come back and symptoms can subside. Bad news is, “chemo-pause” comes on fast and feels more intense than typical menopause. It’s like falling off a cliff.

My acupuncturist asked how I feel about not having a period. I said, I have no problem not having a period. I do have a problem with: hair loss, hot flashes, waking up at night and having trouble going back to sleep, and brain fog.

Yes, the hair loss is continuing at a very high rate. My guess is I’ve lost 50-60% total? Many people tell me that they can’t tell, which is nice. And also, I can tell and washing my hair remains a very upsetting task. I was going to get it cut so at least the volume of loss would look like less in my hands but I got a case of the fuck-its and am hoping this too shall pass. Plus, I gotta get surgery and my focus needs to go elsewhere.

Hot flashes have gone away with Veozah. But, since starting Veozah my resting heart rate has increased, my HRV has tanked, and my Readiness score is declining. Thanks Oura ring. That data’s coming with me to my next breast oncology follow-up in a few weeks. I don’t like it. It also doesn’t seem like an ideal place to be going into surgery, but that’s what’s happening.

Yes, I’m still waking up multiple times between 2am and 5am. But, it’s not because of hot flashes. So, win? I am, however, in sleep debt for the first time since—wait for it—the week before my mastectomy. A trend!

And, yes, I’m experiencing brain fog but I forgot what I wanted to say about that.

Birthday / Get Away

My birthday was last week. I’m 45! I can get screened for colorectal cancer now. *cough*

I went away with my dog for my birthday, which was nice. I went to a town on the Bay in Virginia I thought I’d love and I was low-key considering moving there when treatment is over. (My body is craving more nature.) But, I didn’t love it so it got crossed off the list. 

P.S. If you’re 45 or have a family history of colorectal cancer, please get your colonoscopy.

LAR Pre-Op

Now for the big one.

I had my two pre-ops for my LAR surgery which is scheduled for tomorrow—Tuesday, July 28th.

I met with a nurse about the anesthesia prep (I’m basically a pro at this now) and my surgeon about everything else.

The nurse gave me my incentive spirometer (remember that?) and actually took a baseline measurement this time. Goals! Love it. I also got my own little bottle of Hibiclens for my showers (even though I still have some left) and a delicious bottle of Ensure Pre-Surgery something or other which apparently has been “proven to help recovery time.” Curious as to how, I turned the bottle around and looked at the nutrition label. It has 50g of carbs and no protein. I asked no questions. I just don’t understand the medical world sometimes.

But, they probably gave it to me because eating is going to be a problem.

Today is my prep day. Bless my surgeon for giving zero fucks about the “clear” part of the clear liquid diet I need to do. She crossed that word off the paper and wrote “ANY COLOR” on it which made me laugh. I was so paranoid about “clear” for my colonoscopy.

So, hooray for orange gatorade. 

For my prep I’ll only drink liquids, start an excessive consumption of Miralax starting at 1pm, take three rounds of antibiotics (on an empty stomach… good times… I got me some new Zofran though! Too bad they’ll want me to poop at some point), and wake up at 3:45am to drink my delicious 50g of Ensure carbs.

Surgery’s at 8am. Should take four-ish hours. Then recovery, get wheeled up to a private room on the 11th floor with a view (yes, another trend of mine—so fancy), and will be walking by the end of the day.

That is a hilarious joke. But, I like jokes so I’ll give it a go. 

Also, I do not like blood clots, so.

I’ll do a liquid diet for about another 24 hours and if I’m ok progress to soft foods then A REGULAR DIET. The paperwork says (and so did the dietician, initially) that I’d need to do a low-residue diet for the first few weeks then add food in slowly. But my surgeon literally ripped that page out of the packet and said, “there’s no scientific evidence supporting this anymore” at which point I almost cried in joy. 

But I’m still going to buy Rice Krispies just in case because, tradition.

And, I’ll have to do it if I get diarrhea which is like, way super super likely. But hey, another small win.

I asked the dietician if I should be logging everything I eat and all bowel movements to track trends and she actually said, no…? She didn’t want me to be focusing on that while I was in recovery. I’ll see if I can stop myself…

I also got more clarification on the likelihood of me getting a temporary ostomy (called an ileostomy). This is very common for this type of procedure. My surgeon said if she gave me one I’d have it for two months. I had to remind her I’d be back in chemo in two months so an ostomy reversal would have to wait. I love my team but they keep forgetting about all these competing timelines. I’m so glad I am who I am so I can keep all these geniuses in line. Can I get my PMP cert just for having gone through this? Seriously.

So, the ostomy plan is: she’ll decide in surgery. She’s going to make the larger of the several incisions I’ll get in my abdomen (the one through which she’ll actually remove the tumor) where the stoma would be for the ostomy. Then, if I “even so much as blink funny in that room,” I’m getting an ostomy. If everything looks perfect (good blood flow, no tugging or tension in my colon, and whatever else magic they sniff out in there), I won’t get one.

She said, “if you even so much as blink funny” a few times. I loved this because what I heard her say is “I am not fucking around with your safety.” Here’s the big reason why:

A big complication for this surgery is an anastomotic leak—a leak in the area where they connect the colon to the very small (in my case) remaining part of the rectum. If you have an ostomy, stool is diverted from that area. If you do not, it flows through making sepsis pretty much a given if there’s a leak—then everyone goes crazy and I get rushed into emergency surgery and knocked out and cleaned up and 100% get an ostomy, hopefully not permanently. An anastomotic leak usually happens in the first 10 days post-op. My anxiety and I are already having long conversations about this following what happened post-mastectomy. I will talk with my psychiatrist to see how much of my Ativan I can safely take in this time frame.

But look. This surgery and the complications and the side-effects are so… all over the place. 

I’ve been doing better with my mindset, which at this point is:

1. Once this is over there won’t be a tumor in my body. 
2. Once this is over I will no longer be bleeding and shedding tissue every time I go to the bathroom.
3. It is what it is.
4. Can we just get this over with, please?

Which, I think, is a pretty ok place to be.

And, yes, I’m also still really scared.

But, it’s another opportunity to hold two truths at the same time.

 

---

 

To get posts sent directly to your inbox, click “Subscribe” at the top of the page.

To listen to an audio version of this on Spotify, click here. To listen on Apple Podcasts, click here.

To read other posts, visit the archive here.