Heading into 2023 Cancer Free
Turning the corner to a new year and being cancer free is a true blessing. In life we all will be handed shitty situations, it’s part of life. I’m extremely grateful that this round of being handed a pile of shit was not nearly as bad as it could have been and I have come out on the other side healthy, cancer free, and strong. Also, with a new personal commitment to using my story to spread the message of early detection to ensure the shit others are handed are as early and addressable as possible. There’s the notion of turning lemons into lemonade – I chose not to try to come up with a similar idea using shit. You’re welcome.
Last Friday I met with my Oncologist, Dr. Lassi. We discussed the surgical pathology discovering the 1.3mm tumor of invasive cancer. I didn’t ask her, but I do believe having that teeny tiny bit of cancer that escaped the ducts actually made my diagnosis Stage 1 cancer, not just the Stage 0 as originally thought. All that imaging – two 3D mammograms and an MRI and that invasive cancer never showed up. If I had done a lumpectomy for the stage 0 cancer we knew about, it wouldn’t have meant finding or removing this tumor. Dr. Lassi reinforced the mastectomy got it out – and then discovered, reinforcing my decision to have the mastectomy in the first place. Even though the invasive cancer was small in size, it does change the statistics for recurrence. If I do nothing, it’s a 5-10% chance of recurrence, which is low. If I go on Tamoxifen, a hormone treatment, it reduces the risk of recurrence to under 2%. She said while from 5% to 2% doesn’t seem like a lot – it is statistically significant. I asked if the cancer tends to return to the same spot – like the DCIS (stage 0 cancer) does. Unfortunately, invasive cancer likes to return to the bones. As I sat there on the call, I felt my stomach drop and I felt gutted. By the time I started writing this blog I was past the initial shock of diagnosis and extreme fear I felt right away. This was the first time since diagnosis that the feeling was back. Yeah, coming back to the bones is bad – very bad and if there’s anything I can do to minimize that risk, I’ve got to do it. Last Saturday I started Tamoxifen and will be on it for 5 years. I’m assuming at that time we can re-assess.
There are side effects and risks with Tamoxifen. To mitigate side effects, I’m on a 50% dose for the first month. So far, so good. The bigger concerns are the risks. Blood clots – not good, but I’m taking a baby aspirin to combat those. I also already take fish oil and I know that thins the blood, so that can’t hurt. For pre-menopausal women Tamoxifen can damage bone density. I have baseline bone density imaging this coming week and we will monitor it. The good news is strength training, weight bearing exercise, eating lots of vegetables, getting enough protein, and taking calcium and vitamin D are all things that strengthen bones – and they are all things I already do. Check. Another risk is endometrial (uterine) cancer. 1% of women on Tamoxifen get endometrial cancer. Of course, hearing about another potential form of cancer was jarring, but Dr. Lassi told me the good news is that uterine cancer doesn’t travel – so worst case, they just remove yet another organ if needed. I’m not sure that’s actually good news, but from a medical outcome perspective, I’ll take it, plus 1% is low. In any case, cancer to bones = not good…so in the spirit of doing what I can, on the hormone treatment. In addition, I will have ongoing blood test screenings to look for cancer markers, changes to my liver and bones. While I don’t love more appointments and blood tests, it’s comforting to know Dr. Lassi will be proactively looking for changes/trouble.
Note – the Dr. did say a side effect of hormone treatment is irritability and moodiness. I said if you ask Marc, Gracie and my dad they will think I’ve been on this treatment for decades, so don’t worry – there won’t be a noticeable change 😊.
To date I’ve had two reconstruction fills. I was warned about extreme pain that can come with the expansion. So far, I’m doing very well. I’m starting to wonder if I’m part robot (let’s go with Bionic Woman for those who remember the Lindsay Wagner show) because I’m not in pain. My pain tolerance has been incredible, which tells me how very, VERY bad the nerve pain must have been 4 years ago when I had a herniated disc pressing on a nerve to my shoulder and arm and was at a 10/10 for pain for a very long time. That was horrible, this is not so bad. I’m thinking 2 weeks and maybe I’ll be done with this part – and then I get to wait 3 months until the next surgery. The good news is when you see me – I look like me and it’s not a bra stuffed with socks like I tried to do in 6thgrade (after I got the idea in the book, Dear G-d, It’s Me Margaret)…it’s me.
Have I told you how much I loath my tissue expander? Earlier this week I referred to it as a plexiglass bustier. It’s a real nuisance and I cannot wait for it to come out. It also creates a strange shape that reinforces the plexiglass bustier visual. That won’t be with me forever – just during this part of the process. Sleep is still an issue, BUT…in 6 days I will be able to sleep on my side. That day cannot come soon enough. Being stuck on my back with the tissue expanders just digging into me and not being able to move around – leaves me crazy stiff. I mentioned I’ve been walking very slowly. It was 1.0 then 2.0 and eventually 2.5 on the treadmill. Note – that is the speed not the incline (zero incline) …I’m forced to be a tortoise right now. Walking has helped with the aches and yesterday I happened to mention it was really helping to my doctor. I very quickly wished I hadn’t brought it up. I got in T-R-O-U-B-L-E. He said no walking. I told him he said I could walk around the house – just nothing that could get my heart rate up. He again said no walking. I said, but my heart rate is around 70 beats per minute…that’s not elevated…that’s some people’s resting heart rate. Last time he adamantly said – no walking. Well, dammit.
I did ask when I could begin exercise. He said 4 weeks. That’s this coming Thursday (okay, call it Friday). I asked what I can and cannot do. He said – anything, just take it slow and be careful. Wait a minute – this week I can’t walk at a nearly standing pace and next week…anything? Challenge accepted. I asked about running. Yes. Weightlifting? Yes. But with everything – take it slow and be careful. This makes no sense to me. How can I go from ZERO walking at a snail’s pace to running and lifting weights? I know, he’s following the recommendations, but I am taking some personal interpretation and creative license here. I am going to continue to walk at my snail’s pace this week (it’s not even like I go a long time and I don’t even use my arms at all), with my PT (which is approved). Late next week I will commit to being very careful and start SLOW. That is so hard for me, but in the spirit of not injuring my reconstruction (or my back that hasn’t had the full weight in the front for all this time), I will onboard and gradually expand. I’m not sure I will get to my heavy weights while this tissue expander is in – it does like to sharply dig into me. That means between now and recovery from the second reconstruction surgery in April I could be off the heavier weights until July. And then there is likely to be a 3rdreconstruction procedure in July/Aug. Sigh – I’m going to have to test my ability to be flexible and adapt. I’m a creature who loves her routine – so this will be a legit test for me. I know – cry me a river, Pam.
I have said it before and will say it again – the support has been phenomenal. Hearing from people in my life – those from my past and present has been a real treat. It also serves as an important reminder that I need to make more of an effort to stay connected to people in my life. We all get busy and it’s so easy to not make that effort but connecting/reconnecting reminds me how fortunate I am to have such incredible people in my life.
Speaking of support – the name of this blog is Pink Sky, a reference to my mom and the epic pink skies I have seen since she passed away January 31, 2020. Many people have texted/emailed/Facebook messengered me photos they took of the pink skies. I kid you not – I see pink in the sky all the time – sometimes pale pink, often bright pink. And apparently, my mom is not just in Minnetonka – but in cities all over the place. Likely places that have great shopping or gossip. If you haven’t noticed – look outside when you wake up, look outside at sunset. Pink skies are there and are a constant reminder of strength, love, hope and support. A tangible reminder of some of the best parts of life. As we head into 2023 may you all have great health, strength, love, hope and support.
Bob Barker used to end every episode of The Price is Right with his public service announcement (PSA). He would say “Help control the animal population, have your pet spayed or neutered”. It’s not nearly as succinct or memorable, but as we leave 2022 and enter 2023, here’s my PSA. If you are a woman (of appropriate age), please get your annual mammogram and ensure it’s a 3D mammogram. If you are not – please encourage the women (of appropriate age) in your life to get their annual mammogram and ensure it’s a 3D mammogram. In all cases, prioritize your health and do what you can to keep what you have or make it better.