It's Game Time, Again!
My last update was January 22, 2023. I said there would be a pause on posts because if all went well, I wouldn’t have much to say and thankfully, that has been the case. However, with my 2nd reconstruction surgery days away, it seemed like the right time to post an update.
The last three months have been great. I’m in the best physical shape of my life, able to do anything I was capable of before. Running, weights – you name it, and I think my arms are even stronger than before the double mastectomy thanks to my determination to not be held back by a major surgery. The pesky tissue expanders stopped bugging me about 2 months ago and life has been normal. I feel good, the reconstruction looks pretty good – though my family tells me when I hug them, they feel like I’m pressing into them with Madonna’s bustier or those hard massage balls. That means those of you I’ve hugged haven’t said anything but may have thought to yourself that I was trying to puncture you with my beastly tissue expander. Never fear – it’s coming out on Thursday, soft hugs ahead.
Thursday, April 20 is the date! Tissue expanders and saline implants that have been with me since December 8 will be removed and my new, snazzy silicone implants will go in. They won’t inadvertently injure others, will be more comfortable, look more natural and will be adjusted for optimal looks. Since I recently went on senior spring break with 20 of my favorite high school senior girls and their parents and made it through a week in a bathing suit just fine – I’m thinking the new upgrades coming are just icing on the cake!
The past few months did have a fair amount of “my new normal” experiences. It’s a lot of appointments, but they are important. I, like many of you, feel like I never have enough time to have tons of personal appointments, but I prioritized getting it all done.
I had additional genetic testing – a deeper dive from the one I was able to get right after diagnosis to rule out BRCA 1 and 2. I was tested on more than 80 genetic markers that would mean a greater risk for things like colon/pancreatic/melanoma and all 80+ (including BRCA 1 and 2, again) all came back negative. That was great news. Doesn’t mean I can’t get them (I don’t have BRCA, but I did get breast cancer – likely environmental vs. genetics), but lower likelihood.
Having cancer does mean higher likelihood for another cancer so I had/have additional screenings. Did my annual dermatology screening – had two moles removed and while both came back benign, the one on my back had cells that were “changing”, and they didn’t like that. I need to have them go back in and go deeper and ensure everything is cleared out. Since I will need to sleep on my back for a month after my reconstruction surgery, I’m waiting until right after that to have the back work done since it will mean stitches. Sleeping on my back with stitches seems not ideal. They said that’s perfectly fine – it was benign, just being cautious so it doesn’t morph on me. In May I have a colonoscopy. I did have one 10 years ago, but…it’s been 10 years and now I’m at the age where I am supposed to get them every 10 years. So that is coming. I’m a big fan of being on top of screenings – they are not fun, they take time – it’s easy to not do them because none of us have the time and the hours they’re offered are not convenient if you work. Many reasons to avoid/delay – but my breast cancer screening saved my life, so I’m doing my part to be proactive.
I did have oncology blood work done. Dr. Lassi said I will never need a mammogram again, but they will do physical exams in the office and I will do bloodwork. If breast cancer returns it likes the liver and bones – so we will watch those. My blood work in March looked good and we have a great baseline.
In early January my oncologist put me on Tamoxifen. Since I tested Estrogen Positive and HER2 Positive (I was Progesterone Negative, for what that’s worth), it means I will respond well to hormone therapy. Tamoxifen basically quiets down my ovaries/hormones to protect against breast cancer recurrence. Many women have terrible side effects and can’t live with them – I’ve been incredibly fortunate and have had ZERO side effects. I will be on this for 5 years and it puts the risk of recurrence to under 2%. 98% chance of positive outcomes – those are odds I would take any day of the week at the casino. Tamoxifen can cause uterine cancer so being on it means screenings. So – being proactive, in March I got a pelvic ultrasound. It was supposed to be a baseline. That afternoon at 4:30PM (on a Friday – meaning I wasn’t going to hear from anyone until Monday), MyChart had the report. I got it at the same time my doctor got it. The report called out a benign cyst and a couple fibroids. Many women my age have those – they’re normal and you don’t even know they’re there. However, it called out my uterine lining was thick. 20mm thick and I should have an OB-GYN follow up.
Despite knowing better, I turned to Dr. Google. As I was furiously researching – Marc is standing there saying “put the phone down, please stop Googling, PLEASE”. You know I didn’t. Normal pre-menopausal women can range (depending on time of the month) from 5-11mm. Post-menopausal women (and women on Tamoxifen – which mimics menopause) should be 5mm or less. I am at 20mm. According to “the Google” that is high risk for malignancy. As you can imagine, that was a fun weekend. Sunday Gracie and I flew out of town for a college visit. Monday morning before Admitted Students Day – I call the OBGYN office “I need to see a doctor; I need a biopsy”. This was March 20. “We can see you April 19”. You know my response “that’s not going to work for me…I need a biopsy”. They got me in the next day. They determined they needed to do a hysteroscopy biopsy – for those who know the term D&C…I needed one of those. I miscarried once but didn’t need a D&C, so this was a first. The issue was timing. My urgency was high and normally for a D&C you go to a surgical center or hospital and get put under. Those appointments were booking further out, and I wanted it done STAT. The doctor asked, “how’s your pain tolerance?”. Very high. Well, we can get you in and do it in the office, but you can’t be put under. I’ll do it.
Two days later – they let me take 3 Advil and only 3 Advil before the procedure. For perspective, Gracie recently had her wisdom teeth removed and she was taking the equivalent of 4 Advil at a time during week of recovery, but I was having a procedure women go under for and I only got 3 Advil? That’s correct. It took about 15 minutes and let me tell you – I do have a high pain tolerance, but this was no damn joke. I was channeling my mom and her tough as nails pain tolerance and when I got done, I decided I truly was badass. OOF! However, by the time I got home and walked around a bit – I was back to fine. I dare anyone to challenge that women aren't tough! Great news – everything was benign. Doctor thinks the radiologist read the fibroid pushing into the uterus wall as uterine thickness. I’m good for now. But I did learn something interesting during the process. If at some point I do need to get my uterus out (and/or ovaries), they now can go right through the belly button…no scarring. My mom and two grandmothers with their abdominal scarring from hysterectomies sure would have appreciated that.
I did have an experience that was heart wrenching and inspiring at the same time last month. A colleague named Matt lost his wife, Heather, to breast cancer less than two years ago. Matt reached out to me and asked if we could meet for coffee and I was happy to. To be clear, I didn’t know Matt and Matt didn’t know me – we knew of each other. Matt proceeded to tell me his and Heather’s story. There was a ton of inspiration and heartbreak in his story and they now live in a place in my heart. But the reason Matt came to me was because Heather was diagnosed at Stage 0 in her early 30s. Because it was Stage 0, she didn’t get any additional treatment. He was glad to know I was on Tamoxifen to minimize recurrence and as a reminder – if they hadn’t found the 1.3mm Stage 1 tumor AFTER surgery (it didn’t show up on imaging), the oncologist wouldn’t have recommended Tamoxifen. Matt’s wife, Heather, was good and clean for 5 years. At the end of the 5 years, they were told “you’re good – you don’t need to be seen anymore”. Off they went to live their lives. At 9 years Heather was diagnosed with cancer – it had metastasized. After fighting like hell (and they did fight and try anything they could find), Heather lost her battle. Matt came to me to say if they ever tell you ‘you’re good, you don’t need to be seen anymore”, please don’t accept that. Fight to continue to be monitored, even if you must pay out of pocket. He said he will never know if Heather’s outcome would have been different if detected earlier, but she would have had a chance and/or more time. Matt said he wasn’t sure how I would react to him coming to me – not knowing each other and not knowing if I would be angry or scared with what he wanted to say. Think about the gift Matt gave me. Taking the painful learning he and Heather had and trying to turn it into saving someone else. Generous, inspiring, and important. I’m tearing up even writing this. Trust me – I wouldn’t have known better, but now I do. I will not take “you’re good” as a decision and I will continue to be monitored for as long as I walk this earth. And I will tell everyone I know to help pay it forward.
The surgery on Thursday is not nearly as big of a deal as the double mastectomy. It’s in a surgical center, it’s outpatient. I am taking off the day of surgery and the next day. I’m betting on my ability to bounce back quickly. It will mean a month of sleeping on my back (which I hate) and no exercise. I will break the rules and walk the 1-mile Minneapolis Race for the Cure on Sunday, May 14. I would love for anyone who wants to join my team “Pink Skies Forever” to walk. I’m also happy to share my fundraising link if you can’t walk and want to support the cause. Many of you have already given and I am behind on thank you responses – I assure you; they are coming.
Think positive thoughts for me on Thursday and please keep spreading the word about getting those annual mammograms and opting for the 3D version. The number of people who have told me they got one makes me truly happy. You can’t control what happens to you, but you can control what you do with it. Early detection is everything.