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Diagnosis / Treatment Update: LAR Surgery and Hospital Stay

I’m one week out from my Lower Anterior Resection (LAR) surgery and things are going well so far. My surgery was done with the da Vinci Surgical System, so it was minimally invasive—though it’s strange to think that four robot arms digging around in your abdomen and pelvis is minimally invasive. But I’ll absolutely take it over being completely cut open.

Here’s what I walked away with:

  • Five incisions on my abdomen, four of which are about a centimeter in size (where the robot arms went in) and one of which is about an inch and a half (where they pulled the tumor out)
  • No ostomy 
  • And, perhaps the most important part: the tumor is gone. I did get my pathology report back, and while I don’t want to share all of it until I speak with my oncologist to gain a better understanding of it, I will share that my surgeon got clear margins—no cancer cells at the edges of what she removed. This is HUGE news. 

Some side notes on my colorectal surgeon, Dr. Matzie:

  1. She’s awesome—female, no bullshit, blue eyes that make direct eye contact, Harvard degree, hiked the Grand Canyon down and up—twice, in two consecutive days—and cusses just as much as I do.
  2. She wasn’t my original surgeon, remember? Unbeknownst to me and my colorectal concologist, Dr. Cannon, my original surgeon left his practice this spring and went to Vietnam…forever? For real. So, Dr. Cannon recommended Dr. Matzie… and so had my breast surgeon way back in early February when we first learned of the second diagnosis. So, Dr. Matzie and I believe we were just supposed to be together all along. Which is 100% true because this woman just helped save my life in a major way.

Here are some highlights of this surgical journey:

Prep Day: Monday, July 27

I had to do an all liquid diet—but it didn’t have to be all clear liquids like it did for my colonoscopy! Dr. Matzie said I could drink whatever I wanted and to “not worry about all those little details.” My bowel prep was two bottles of Miralax in eight 8oz glasses of whatever I wanted over two hours. So, no yucky tasting stuff this time. I had prep that was mixed in orange gatorade, red gatorade, beef bone broth, chicken bone broth, coconut water—what delicacies! And, we all know what happens next, and that was completely fine.

I did my first Hibiclens shower, dried off with my clean towel, dressed in my clean pyjamas, and went to bed in my clean sheets—just like I did for the other two surgeries I’ve had in the last five and a half months.

Surgery Day + PACU

I had to wake up at 3:30am to drink one final thing: a bottle of Ensure Pre-Surgery. Gross but tolerable. Then, Hibiclens shower #2, dress in clean clothes, and leave for the hospital—Inova Fairfax, where I was born. This will be the first time since my birth I have been hospitalized.

The only interesting pre-surgery thing to note: I agreed to a research study, so part of my tumor now sits in a tissue lab for years, available to anyone studying this. I gave extra blood, did a half-hour interview, and it felt good to help in the smallest possible way I could given the circumstances. If a tiny piece of my tumor helps someone else someday, that’d be great.

I was given Versed and wheeled into the OR—without my glasses, which was super disappointing as I am blind without them and therefore couldn’t see the robot. They set me in place and I remember my drunken-Versed self asking if they could play Into the Mystic, and they did! It was loud in there (or I was very high) so I had to strain to hear it. Then, unlike the first time, I heard the whole song. It ended and Brown Eyed Girl came on. I exclaimed, “You can skip this one!” and someone in the room said, “Why, because you don’t have brown eyes?” and I said, “Yes!” (I’ve never liked that song…) Song three came on and I remember thinking, “Oh I love this song… what’s the name of it… don’t forget this song, Alli…!” Then I was out. No clue what the song was. I’m looking forward to six months from now when I hear it and my little trauma memory pops back to life. 

Surgery took exactly four hours. During it they removed the tumor, most of my rectum, surrounding fatty tissue (the mesorectum), 37 lymph nodes (they usually aim for 12), and a couple centimeters of my colon before reconnecting my colon to what little rectum remained.

I woke up in the PACU, learned I didn’t have an ostomy, and was totally high on all the meds so things get a little spotty for the next couple days. Here’s what I remember:

  • I was on a clear liquids, then liquids only diet until Wednesday night. (That’s three days without food.) I had water, broth, apple juice, jello, and one popsicle.
  • I walked across the hall (like, 15 feet) within hours of waking up.
  • I had a Foley catheter for two days (which had to be wiped by a nurse any time I used the bathroom)
  • I had no control over any bowel function for about one day and very little control for about another day.
  • I was in the PACU for 30 hours waiting for a room.
  • I was in very little pain because I was on a solid Oxy/high-dose Tylenol/high-dose Ibuprofen rotation + Anesthesia come-down
  • My mom, dad, and step mom were there
  • One of my nurses worked at a five star resort in Mauritius and while he wanted me in a room he didn’t want me to leave because anyone could come out of surgery and take my space, including a prisoner, and he thought I was nice. 
  • I walked to the bathroom, supervised, a couple times. I walked down the hallway, supervised, once. All times with a walker. 

Hospital Stay 

  • I was moved to my room on Wednesday around 6pm—private room, 11th floor, view of the sunrise.
  • By the time I was moved upstairs I had pretty good control of my bowel movements.
  • Because I was tolerating liquids well, on Wednesday night I was transitioned to a regular diet. I had three bites of chicken salad and two bites of bread.
  • I was taught how to get in and out of bed using a little roll and press technique since my abdominals (and fascia) were cut through.
  • I did three to four laps of the hospital wing each day with my IV pole for balance, and was supervised by a family member most of the time.
  • Over these next several days the spasms, cramping, gas pains that happened throughout my entire digestive tract were insane.
  • On Thursday, my colleague Ben called (he never calls) and said, “I’m asking permission!” I said, “For what?” He said, “To come visit!” He was 15 minutes away and had just finished a workshop. So, he came and visited for about two hours and brought me a stuffed Capybara. Totally f’ing random but a) so cute and b) at least 75% of the people who came into my room the following days exclaimed “Is that a Capybara?!”—including Dr. Matzie and all of her residents. I was really touched.
  • Then, after Ben left—or even a bit during—things got rough. My pain skyrocketed to what had been about a steady three/four on the pain scale up to a steady eight/nine.

    I couldn’t sleep (more than I already couldn’t sleep) and got out of bed to pace across my room, then eventually out in front of the nurses’ station. After a few steps it was hard to move my right leg.

    The nurses wanted to give me more oxy, which I took, but I kept telling them it wasn’t touching the pain. I cried a lot during this time but it is very hard to cry or blow your nose when you can’t contract or really move your abdomen without even more pain. It was incredibly painful to breathe, sit, stand, lie down; nearly impossible to get my legs in and out of bed.

    When the surgical team checked in on me Friday morning in rounds they said I could probably go home that day and when they asked me how I felt about that I said, “Scared.”

    I explained to them what was going on and requested to go off the oxy and onto Gabapentin, as I had for my mastectomy and told them my pain was so bad in the lower right quadrant of my abdomen—where my surgical drain was. (And we all know how much I love drains….)

    That afternoon (Friday), one of the residents came in and said she had spoken with Dr. Matzie and she said it would be safe enough at this point to pull my drain—I had already asked if I’d be sent home with it, we had already talked about how they can become a nuisance. I had three for my mastectomy, remember?

    But let me tell you: it is one thing to have three drains pulled out of your rib cage—one of which looped up over my left breast—and it’s a whole other thing to have a drain that goes from the right side of your belly all the way down to your rectum pulled out the side of your abdomen. And no, they don’t anesthetize any of it.

    “It will hurt, but it will be fast,” they say. And it does, and it is. And just like last time I didn’t care how much it hurt to take out because it hurt so much to have it in. And just like last time, within 45 minutes I felt so, so much better.

    As I said to my mom, “I’m so glad I had a mastectomy so I knew what this pain was and how to make it better!” Silver linings I guess.
  • Some things I enjoyed: waking up Thursday as the sun rose and thinking, that’s so beautiful, before grabbing my O2X Sleep Specialist–approved eye mask and going back to sleep for the twenty minutes before rounds. My TV had a white noise feature, so I had ocean sounds and images on the screen practically around the clock. And Dr. Matzie’s entire surgical team was women — two or three of them knocking each morning, walking in after my sunrise and my tiny nap, and I’d think, I love my team.
  • I was discharged Saturday morning, making my total hospital stay four nights.
    • P.S. Discharge happened in the “Discharge Suite.” Inova Fairfax is amazing.

Where I Stand Now

  • I’m still on a tight Gabapentin/high-dose Tylenol pain management cycle. Pain is low—a two?—and only spikes when I try to sit up, sneeze, laugh, cough (I can’t do any of those things); and is agitated when I roll over, stand, and walk. But…they cut through my entire abdominal wall and operated deep into my pelvis, so I get it. It will take several weeks for this to heal.
  • I’ve started little walks outside and hope to do a four block one this evening 
  • I’m sore and swollen and get tired pretty easily
  • Bowel movements are under control—just happening in their new strange way almost every time I urinate. This will likely shift and change as swelling decreases (I’m very swollen) and I begin to eat more. It will be a multiple-month process to see what my new normal is since I no longer have a rectum. (I think maybe 1cm remains? I have to check the surgical note or ask her.)
  • I’m eating four to six small meals per day, taking it gently with what I eat and stepping it up a little each day. So far, no problems. 
  • My mom is staying with me for the week to help take care of me, walk Toby, and drive as I’m still on movement restrictions.

I know I’m still in the period where complications can happen. Anastomotic leaks and infections are still possible, and my body has a lot of healing left to do.

But today—one week after surgery—I have no ostomy, clear margins, manageable pain, and a body that seems to be healing well.

I honestly wasn’t sure, after everything my body has been through in the last six months, I would be able to say that. So, to me, this is an enormous win. 

 


 

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Diagnosis / Treatment Update: Post-Op, Pre-Op

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.

 


 

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