Cancer updates: post-mastectomy, post emergency tissue-expander removal, post-infection, mid-pandemic.
How am I? I'm okay. I'm 2.5 weeks post-emergency-surgery. It was rushed and a not-beautiful job of being sewn up flat, with extra skin squishing around the stitches here and there. It's evening out a bit, but it's not the pretty flat-job that the GoFlat Movement Instagrammers receive.
I am slowly getting my energy back, but most movements are still completely overwhelming. Fun fact: I've been to at least a dozen appointments since my mastectomy and not a single one has suggested physical therapy.
I'm grateful to have such a huge community of friends because one of them happens to run a Mastectomy PT clinic. Eventually I'll go see her, but right now I'm not interested in risking the COVID numbers.
Mostly, I continue to be enraged by America'a healthcare system and am upset that someone with fewer resources would have an even WORSE experience.
I shouldn't be surprised. It was awful for my mother. It was awful for my father. It's been awful for me. The only time I've been pleased was when I lived in a country with universal health care. Either it was just that they attitude is totally different and people actually care about their neighbors, or it simply behoved the medical staff to take care of their patients (because it was cheaper).
Whatever the reason, preventive care, follow ups, home health visits and mental health checks were prevalent when I lived in Scotland. In America it's the Wild West, and you'd better have written a dissertation on How To Be a Patient with the Knowledge of a Doctor if you want to know exactly how to get what you need.
I wonder about switching plastic surgeons, but I'm also not sure that would solve the problem. Technically, I like the doctor, but he only spends about 90 seconds with me each visit and always seems to be backing out the door the second he sets foot in. I can appreciate that during COVID-times, but I also think if he'd spent more time with me he would have noticed the infection the week before when I first asked if something was wrong with it. Instead I got a, "No, it looks fine," and out the door. I'm not sure if anyone else would be better though, particularly in during a pandemic.
The gatekeepers are really difficult to get through too. This surgeon is at University/Brown Cancer, and while they have the best researchers/scientists/doctors, their administrative staff is ... difficult. My dad had a nightmare of a time getting appointments there (and when he did, the appointments were literally hours behind schedule). I've had the same issue. Long waits for short visits and dismissive tones, followed by absurd medical bills. (My dad just got a bill for a biopsy performed almost two years ago! He died in June 2019. FACE PALM.)
I was supposed to get my stitches out this morning, but it appears that the staff never made the follow-up appointment for me. (Any nurses reading this want to make a house call?!)
Anyway: that's how I'm doing.
-I have one fake breast that's about a B-cup.
-I have one flat no-breast that is kinda concave and loaded with scar tissue.
-I am so so so happy that the only medicinal treatment I need is ten years on Tamoxifen.
-I am still exhausted most of the time, but see a glimmer of hope in eventually being able to walk up the stairs without my pulse racing.
And how is the family doing?
-My boys (4&8) are stressed and anxiety-ridden. I wish they had my parents in their lives to distract, send gifts, run to the zoo, anything.
-They are doing well in "school," which mostly just involves lots of conversation and googling and coloring with me in bed. They are doing Prodigy for math, which they love ... it also tells me that my 4-year-old is almost finished with 1st grade math and that my 8-year-old is in middle school.
-I'm beyond grateful that they are so clever. It reinforces the idea that they are not missing anything in school, aside from social interaction. Which no one is getting this year, so all kids will be equally messed-up from that I suppose.
-David is working his ass off between 12-hour-days on calls solving innovative strategy stuff or whatever it is he does and the rest of his waking hours spent doing my dishes and laundry and fixing up the kitchen renovation that we were in the middle of when pandemic struck. One of these days we're going to actually have a kitchen counter, and I'll actually be able to chop a vegetable! #AGirlCanDream
What to look forward to from me... because I don't know how else to pay it forward right now than to write, share stories, provide something useful.
- Gift Guide for people undergoing surgeries/mastectomies!
- Questions to ask when you've been diagnosed with Breast Cancer
- How to navigate the healthcare system (once i figure this out ha ha!)
Ways to Support Me:
Tip Jars & more at https://linktr.ee/brigidkaelin
Patreon Commnity: https://www.patreon.com/brigidkaelin
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5 comments
I am so sorry to hear of the frustration with the staff and docs at your cancer center. Ten yrs ago when i went thru breast cancer i went to the cbc thru Baptist. The staff and docs were wonderful. And my plastic surgeon may not have had the best bed side manner but he was absolutely the best surgeon. Dr. Noel. When i subsequently went for mammograms the tech knew it was his work because of how good it looked. And how wonderful you dont have chemo and/or radiation to contend with. That was not fun! Thanks for the update and remember this too shall pass!
ReplyDeleteOh goodness, I've heard GREAT things about Dr. Noel. Thanks for sharing your story with me! I am switching doctors for sure, but can't get into anyone knew until Dec 23.
DeleteNoel was my surgeon and he was incredible. He's very dry, and that took some getting used to. But before finding him I had many, many referrals from several ob/gyns who had seen his work and knew him. He was both obsessive with how the final looked and with infection control.
DeleteSending lots of love to the Kaelin/Caldwell crew!! Wish I lived there to sit in your driveway and fold laundry or entertain the boys.
ReplyDeleteThank you so much xoxoxoxoxo
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