A month after surgery
Luck on my Side, Physically:
- I managed to avoid major pain and discomfort for a full five days after surgery due to a pain block they injected during the procedure. I am very lucky this worked and very lucky that it was made available to me without any sort of “well, sometimes insurance won’t cover it” negotiations. I am aware that apparently not everyone in my situation gets this and not everyone’s body reacts to it with equal spirit.
- Days 6 - 19 involved a daily hives breakout/rash on about 80% of my body which...didn’t feel at all lucky at first but I’m calling it lucky because it went away quickly with the help of Claritin or Allegra or Benadryl (Benadryl aiding in a two-hour zonk out as a bonus). Turns out I am allergic to sulfa drugs, specifically Bactrim this time - the antibiotic they prescribed to ward off infection after surgery. I took the antibiotic for five straight days, reacted on day 6, then had to endure the daily reaction for several more days for it to completely exit my system with the help of drinking Niagara Falls equivalent amounts of water. But I’m calling it lucky because there was an immediate path to relief, enabling my mental space to calm the you-know-what down about it relatively quickly. I also forged a friendship and admiration for Dr. Vargas' nurse, Mary, who was on the phone with me daily, sometimes several times in one day, helping me navigate this with a calm demeanor, tricks to try for more comfort, and most of all - empathy. Nurses are amazing and this one, in particular, is quite special.
I should insert here that I, until this health episode, have had zero allergies other than occasional hay fever in the fall, a one-time severe poison ivy allergy during which I thought I might actually die, and generally above-average sensitive skin. Now I can add breast cancer and a sulfa allergy to my health record, you know, for excitement and variety.
- We have eaten so, so well - probably a little too well, due to the outpouring of both pre-scheduled meal train contributions and surprise meals/gift cards/donations/things that have shown up. I cannot describe my gratitude for how tremendously easier this has made things for particularly my husband and in turn, our son. There is a huge boost of “can people BE any kinder” with each and every show-up. I am vowing to pay this forward every chance I get, now that I truly know what it feels like. Please, continue to share your celebrations but also your challenge so I may do so.
- My body continues to heal, working through its own systems of combating the various things that have happened to it. I am less swollen and less bruised which makes looking in the mirror less stressful. The drains came out during the third week which enables me to move more freely, shower much more delightfully, and access more of my closet. My closet is, er, on the robustly stocked side of things and thus a noticeable improvement in the day-to-day, she humbly admits.
- I've started physical therapy exercises. Most of them are easy and cause very little pain or distress. Two of them are quite hard and painful and require deep breathing to do them without crying. But each week the pain decreases, mobility increases, and I'm confident I can get back to where I was before my upper body completely changed.
Mental Health Stuff:
- I’ll start big:
September 29, 10 days out from surgery, on a Thursday around 9:30 am, in a small exam room at the Virginia Cancer Specialists Fair Oaks office, via the words of Dr. Vargas, his nurse Mary, and a guy named John who had interpreted the final pathology the day prior, I learned that I am now cancer free and need no additional treatment. Nothing invasive was found, my margins are clear, my lymph nodes are intact, and the mapping showed that nothing had spread beyond the milk ducts. Basically, everything found and analyzed were things they expected to find and analyze and were consistent with the original diagnosis. I do not return to this surgeon's office for six months, like anyone who has had surgery might, for follow-up. This very scary thing that has taken up expansive real estate in my mind, was declared over.
- I will be taking off the 29th of September, or the surrounding Friday or Monday, for the rest of my life.
- Another biggie: the pathology report confirmed that not only did I have DCIS on the left side in the two places they biopsied, but that it was present in eight of ten glass slides - meaning I had an extensive amount of it elsewhere. The surgeon's and radiologist's best guess was correct and their recommendation for a mastectomy on that side was the right call.
- Another biggie, Part 2: The decision to do a double mastectomy (vs. a single) was my own choice, to mitigate long-term risk. The pathology report on the right side showed a pre-cursor to the same cancer I already had confirmed in the left, making it four times more likely that I'd develop that same thing later over the next 25 years. I was told that they would've strongly advised me to take the hormonal therapy medication for five years, had I decided to keep the right side. This is all great news, albeit somewhat camouflaged good news, as I would rather avoid having to go through long-term treatments of any kind if possible - particularly with the side effects of the hormone therapy and particularly being of pre-menopausal age. So getting this pathology report was very validating and gives me much peace of mind that I made the right decision under my circumstances. Now I get to move forward without the constant worry and aggressive monitoring I would have had to endure.
- Have you ever tried to thank someone for something so big that you can't imagine there to be words to catch it? It's hard to describe. But I did try.
- This will sound cliche, but all inhales and exhales since September 29th have truly felt different. That whole breathe out the old, breathe in the new thing. But also honor the old, and give acres of space for the new.
- What is new? Moving forward, I'm taking a solid look at how I respond to stress. I tend to turn stress into a project, mulling it over, inviting it to stay way too long, not realizing its impact. Imagine inviting the opposite of stress - peace, calm, relaxation for example - for extended stays, and realizing that impact. The last piece I wrote here was all about being resistant to change and wanting stability at all costs. I now have a lot of thoughts swirling around about new habits, boundaries, and ways to invite more of the things that I know are helpful. I tend to treat every single thing as important and high-priority. I'm not doing that anymore. It doesn't even feel like a new choice I'm making; it feels like a requirement. I've even had thoughts scroll by like, "I require less." Or, "that simply cannot require urgency or importance." Another one is that "not everything requires validation; I can validate myself." In general, my energy could be better spent in different baskets, rather than equally dispersed in some of the wrong ones.
- I originally began writing this piece on October 10th, which dates out to 10/10. The punny-minded have taken to calling it "10 out of 10 Day". This day's purpose is to celebrate the things that are going right in our lives. It was also World Mental Health Day. Part of being a cancer patient is a multitude of resources offered, not only for physical treatment but for mental wellness too. There is free counseling directly related to oncology, tailored to all stages of diagnosis, pre-treatment, remission, post-treatment, and more. I've had one session so far, another next week, and will likely continue for a little while. My focus is on learning about how to come away from this experience with closure, how to handle the real fear of something like this happening again, and what I can learn about coping skills and healthy mental habits.
- The truth is, I thought I would be fighting major depression during this time. I prepared for a whole downward spiral. I've had depression before, always situational. Getting cancer and having a double mastectomy would definitely fit the bill for a situation. I figured this recovery period would be spent on hyper-alert for signs of spiraling out. Everything I read before about having a mastectomy suggests that the depression sinks in afterward when all that has happened settles in your thoughts. Instead, this has felt very much like a second chance, an excuse for a clean slate of mental health. Just as I'd like to make some physical health upgrades in choosing the quality of what I intake and prioritizing quality sleep and exercise, I'd like to equally upgrade the mental health menu - choosing more wisely what to welcome in and what to skip.
- Not that this hasn't been difficult. I've definitely sobbed in the shower, both before and after surgery. I've been in a sort of thought daze for hours at a time, in attempts to make sense of any of this. I've been at the grips of trying to figure out "why" - always pointless, or maybe it is actually the point - not to know why. The entire month of August was horrible - the researching, tests, worrying, shock, and deciding what to do - all particularly terrible. September was a smidge better once I made a real decision on a plan. But then I had to go through with the plan, which was every bit as scary as it was prescribed to be. But maybe I suffered enough pre-surgery to grant this surprise influx of peace that is now October.
- I do have a totally unrelated follow-up appointment with the dermatologist this afternoon. And I'm terrified. I have no reason to expect the appointment to be terrifying, only that it is the first "check-up" of any kind since all this has happened. But I'm working through it and will advocate for myself in explaining my fear. The therapist told me to expect to feel this way for a while and that it's completely normal. She also said the more open I can be about it, the better, so here we are.
The "what else" I've been up to:
- Daily walks with Matt. They've all been wonderful and I will be forever thankful for this time together. This has felt like a vow renewal type of reset, without having to book a trip to an island.
- I've watched a few of my favorite movies like Moonrise Kingdom, L.A. Story, and The Jerk. We're catching up on Only Murders in the Building and enjoying family time watching The Price is Right.
- I caught up on some photo projects that I meant to do this summer. And some other things that just couldn't happen this summer once I got the cancer news. Basically, I'm reclaiming my summer. Even just walking around my house and noticing all the things I somehow got done over the actual summer (we had a major remodel of the main level) with new, less panicked eyes has been a boost.
- I've been reading. I'm in the middle of a delightful British mystery fiction by Richard Osman. ("The Thursday Murder Club"). I've played a little piano, but never as much as I plan on playing. I've meditated more times than I ever have before. I'm running a little experiment on what part of the day makes the most difference. So far, mornings seem to be the best.
- I've attended almost every baseball practice, baseball game, soccer practice, and soccer game with Arthur. I've also tried to participate as much as possible with his fundraisers, school meetings, occasional homework, as well as board meetings at his before & aftercare school, too.
- Family and friends have visited. We've shared lots of food, drinks, and snacks. My mom baked my favorite - pineapple upside-down cake. We discovered a great dessert cafe in Vienna. I replaced my very old phone. We took a fresh load of donations to the Goodwill. I've gotten so many nice gifts, flowers, and cards from friends and students. They are all displayed where I can see them often.
- We decorated for Halloween. I've entered the world of inflatables with a green zombie who rises out of our garden each evening at dusk. A bright purple spider web flashes in our tree nightly. There's just as much spooky decor going on inside as out, and Arthur and I are doing lots of silly Halloween crafting almost nightly now. Last night we played a fun family pumpkin drawing game.
- I attended the Gotham Writers Conference this past weekend, held virtually. It was wonderful as always, with my favorite session being a very practical hour on pre-query research. I have a LOT of new information that I previously thought was locked in a vault somewhere only for "real writers".
- Back to that punny date of 10/10: I left that morning on an Amtrack train to NYC - my idea of something 10 out of 10. I treated myself to a top-three-best-ever trip to my favorite city, by myself. That's a post for another time, but good golly it was perfect. Highlights were seeing "The Music Man" (including Hugh Jackman himself at the stage door afterward) and the New York Philharmonic in their beautiful, acoustically perfect new concert hall at Lincoln Center. I also wandered the city and the park for hours upon hours, being spontaneous about food and tea and hot chocolate and pastries and conversations with artists and conversations with musicians and conversations with locals and conversations with cashiers and picture-taking. It was so much of the soul nourishment that I've needed for months. It's truly one of my absolute favorite places on the planet. Also to note, I didn't think about the word cancer for over 72 hours; a real mark in moving on.
- And...I'm going back this weekend - this time with my sister-in-law! So grateful and excited!
* * *
So, that's the gist of what's been going on, inside and out, this past month. Hard to summarize, which is probably why it took me over a week to write this. If you read this far, thanks for being part of the troop I'm so grateful to have had through all this - your good thoughts have truly meant the world to me and to my family.
A picture that captures a moment when I've felt really great. This time in particular, in front of the fountains at Lincoln Center just before entering.
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