Yesterday was the second anniversary of my big surgery. Oddly enough, I completely forgot what day it was yesterday. I don’t think I actually noticed the date at all - I was reminded today through Apple Photo memories on my phone.
The coincidence that two years later, I am preparing to go under the surgical knife again is not lost on me. There are a lot of emotions surging from the realization of the April 12th anniversary having gone by that I need to process.
The feelings are eerily familiar, yet so completely different at the same time. I know what I’m getting into yet I had a better idea of what the process would be last time. Maybe I should start by listing the similarities and the differences?
Similarities: I’m about to enter short-term disability leave again, and I have a surgery planned at Mayo Clinic on April 24, 2025. This surgery will see me recovering in the hospital for about a week before finishing my convalescence at home. The healing process will take at least 6 weeks, though likely more. I don’t know what part of me will be missing, if any, when I wake up. I have recently (well, tonight actually) fished the last of my chemo (yes, I know I said the same thing 3 - or was it 2? weeks ago, but my oncologist thought we’d squeeze one more week before surgery). I still have stage four metastatic cancer of the sigmoid colon. I don’t know if this surgery will bring me into remission, if there will be any “mop-up” chemo afterwards, or if it will even be successful. I know that I am in the hands of an amazing team and I trust them with my life. I don’t know how this surgery will affect my quality of life. I am hesitant to type out my hopes, but here it is: I hope with all of my heart that this surgery will obliterate all traces of cancer from my body, that I will have no evidence of disease (NED), enter remission, and not see a recurrence and eventually be declared cancer-free. I know that the odds are against me on that. Beyond these wishes, I also hope that I can run again before the end of the summer and that my blood counts rise up and stay stable. And as last time, my parents will be here helping Michelle and I during my convalescence for about 5 weeks.
Differences: I haven’t had a successful diagnostic laparoscopy, so we don’t know what’s in there. It’s been about 2.5 months since my last CT scans, so I don’t know what has been going on. I know what I’m getting myself into with recovery and fully expect that it will suck and that I will get depressed for a little while until it gets better. I am better prepared to deal with all of the handicaps that come with recovering from an abdominal surgery. I am better educated, thanks to ColonTown, on what outcomes are possible and not. I know that I am strong and that I can handle what’s coming, even though I wish I did not have to. I have the skills (and meds) necessary to cope with the depression and anxiety.
Having to go through surgery and all that it entails again is heart breaking, nerve wracking and soul sucking. Realizing that it’s already been two years since I’ve gone through it all is also quite the mind fuck. It feels like yesterday, and it feels like it has also been so much longer. I know I should be grateful for those two years, which have been, all things considered, lived healthily. And I truly am… but I want more. I want 10 more. I want 20, 30, 40 more years. I want to go on my own terms, when I am ready, in my sleep of old age, having lived a long and full life. I am starved for more time, more experiences, more learning. Aside from that, not actually knowing what’s going on in my body is quite confusing. When I went to Yale in February, Dr. Turaga ordered a ctDNA test.
Signatera™ is a highly sensitive and personalized molecular residual disease assay (MRD) using circulating tumor DNA (ctDNA), custom designed for each patient to help identify relapse earlier than standard of care tools.
My oncologist mentioned he doesn’t like ctDNA for cases like mine, while I was mid-treatment, because it doesn’t tell the whole picture. Of course it doesn’t - it will tell me I have cancer, which I already know I have. It’s just an additional data point to be compared against itself over time, like my tumor marker levels (CEA). Well, I finally got the results. They tested against the tissue obtained during my October 2022 colonoscopy from the tumor at the original site. And the results were … negative.
Knowing all that I know and have described in the previous paragraph, I am a bit ashamed by my reaction. I never expected to get a negative test result, to be honest. I just expected it to say yes, positive, here’s a nonsensical number you’ll learn to understand as you keep testing. A negative results took me by surprise, and I spiraled a bit. Like, what the actual fuck? How is that possible? My CEA levels have been in the normal range for months, too. I tried so hard to keep the door to false hopes firmly shut, putting all of my weight against it. What if Lonsurf took care of business - NO! What if my scans show that everything’s dead - NO! What if I don’t need surgery after all - NO! I cannot, WILL not entertain these ideas. ColonTown showed its value again by reminding me that false negatives are not uncommon. Not all tumor sites shed as much DNA, and in some cases, it’s not enough to be measured. This spiraling lasted about 45 minutes. My best friend, my oncology office, and ColonTown helped stop it. I’m ashamed because I know better. I pride myself on my critical and analytical mind. I honestly thought I was immune to this wishful thinking. It doesn’t feel good to be faced with one’s weaknesses.
Tomorrow, I am meeting with a cardiovascular health specialist at Mayo. Two weeks ago, I had a follow-up appointment with my OBGYN. I think I’ve mentioned it. Turns out that cardiovascular wants to see me in person to assess any potential risk of surgery given the history of blood clotting in my family. I’m super grateful that my doctor took the initiative to involve them, so that we can minimize any risks for the best outcome possible. Mayo Clinic has served me so well, and so has MN Oncology.
Aside from that, my parents arrive Wednesday night. Friday is my last day of work before two days of PTO and then my leave of absence from work. Monday the 21st, I will meet with my first surgeon virtually, and then with my new surgeon on Wednesday the 23rd, along with blood draws and a CT scan. Then, I’ll have to do a mini colon cleanse to prepare for surgery the next day. The thought of Gatorade still makes me want to vomit from two colonoscopies ago!
I’ve been coping by being over-prepared for everything. I draw from the annoyances of last time - for example, I bought a pack of grippy socks that are fuzzy on the inside. Hospital socks are truly an abomination - there’s no heel so they twist around. The seam is right against the edge of your toes which is a big yucky feeling. And if that’s not enough, they are never warm enough. I fully expect to have worsened neuropathy in my feet post-surgery, so I’ll want warm socks to keep ‘em toasty. Last time, they ran out of robes at St Mary’s, too, so I had to wear a gown backwards in addition to the one that opens in the back so I wouldn’t flash everyone. So I got a brand new, lightweight robe to bring to the hospital that I’m keeping in the package until I get there. Finally, since only have a single pair of running shoes that are “clean” for the treadmill downstairs, I got some cool Nikes that slip on hands-free so that I can use the treadmill to build up strength during recovery without needing the pre-workout that bending over to tie shoes would be. I’ve got a mental list of items to bring to the hospital - phone charger, eye mask, noise-cancelling earbuds, dry shampoo, hand lotion, etc.
As for what’s next after surgery.. well, I talked with my oncologist two weeks ago, asking him what his plans were for me. Did he think I would do chemo again, or just wait and see? Last time, I had three different opinions concurring that I didn’t need to do any treatment. We would just do quarterly scans and labs and proceed from there. I have no regrets over that choice, but I want to keep my options open. It will be a question that I ask my Mayo oncologists and surgeons as well. Last week, my local oncologist shared this plan with me and I agreed:
About a month or so post-surgery, we’d test for ctDNA again, using the tissues from surgery this time. If those results are negative, and we’d do the same thing as last time - quarterly scans, labs, and ctDNA test. If positive, or if ctDNA ever became positive, we’d think of restarting Lonsurf, with Avastin (Bevacizumab) if appropriate. We discussed how this is NOT standard of care, but I’ve never been one to be comfortable with the status quo. I want to throw everything we have at this cancer. We discussed studies using similar (but different enough to not fully apply) medications and approaches. Most of those were for stage 2 or 3 parents, and being stage 4 is a whole different story.
I think that’s it for tonight. There’s probably a whole lot more I need to get off my chest, but I’m tired :)
Thanks for reading!
xo Isabelle
Sending hugs, strength and best wishes, Isabelle.
You're probably all sorted for your hospital bag, given what you've shared, but just in case, this is what we have in our 'gobag' and a few other tips: https://www.carermentor.com/p/caregiving-hacks-and-tips
I hope something in that helps.
That is a lot. Know that you are in or thoughts. And just as you have been so good to us sending love and healing in our direction, we love you and return the thoughts and positivity for healing and to wipe away all of your cancer!!! You will be top of mind today and especially tomorrow!! We love you!!! Stay strong!!