love is health
I've got blue genes4/30/2020 I've been taking lots of deep breathes lately. I've also been relying on really amazing puns to see myself through the harder times.
I found out today I have a rare genetic disorder called Li-Fraumeni Syndrome. This syndrome is a mutation in my TP53 gene, which is known as the "guardian of the genome." This is normally a tumor suppressing gene; however when mutated like mine is, it cannot do its job as intended, meaning tumors have an easier time growing without resistance from TP53. "Individuals with LFS have an approximately 50% of developing cancer by age 40, and up to a 90% percent chance by age 60, while females have nearly a 100% risk of developing cancer in their lifetime due to their markedly increased risk of breast cancer. Many individuals with LFS develop two or more primary cancers over their lifetimes." OOFT. Those are some heavy numbers and facts. They are especially heavy numbers to have to explain to my 5 siblings, 3 of whom are women, who have a 50% chance of having this mutation too. While it was heartening to have an explanation why I had/ have cancer so young, it's disheartening to hear this gene isn't specific to breast cancer, meaning I am at risk of developing other cancers as well. I was already making many lifestyle changes to accommodate the recurrent diagnosis. I feel like I'm going to have to make even more changes to prevent any other type of cancer from emerging too. After all, I very much intend to live at least 45 more years, thank you very much. You'll keep hearing me say "this is all happening so fast." I'm still working to wrap my mind around everything, and new information emerges seemingly every day. The pandemic alone was a bit much to digest. Pandemic + cancer again was tougher. Pandemic + recurrent cancer + rare genetic disorder is... it's a lot. This month feels never ending. So what does this all mean? It means that, I am freaking fortunate I caught cancer early, twice. Early detection really does save lives. It means I will be hyper-vigilant for the rest of my life. It means that even when this treatment is done, my life needs to revolve around cancer prevention if I'm going to life the long, lovely life I want.
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"The smoke is a bit dramatic."4/23/2020 *trigger warning for anyone squeamish about surgical procedures or "gory" stuff.*
I had one of the most empowering experiences of my life today. I had my re-excision surgery (where my doctor goes back in to remove the remnants of the tumor missed in surgery last week.) Y'all - I got to stay awake for it. AND - I got to watch it live as it took place. My surgeon trusted me enough to be still the entire time (about an hour), offered me a mirror so I could have a better view, and conversed with me for the duration of our time together. She empowered me with knowledge of what she was doing to my body, answered my questions as she worked, and never for a second was irritated by my inquiry. She welcomed it. It felt like genuine teamwork - my role being to tell her if I felt unwell, her role to educate me on what was happening to my body, while doing it. I watched as she made her incisions, cauterized some bleeds, extracted the tissue (about the size of my thumb) and stitched me up. She frequently checked in with me to ensure I was okay, and cracked jokes along the way, making us both laugh. We talked about how she seemed like a magician, prompting her to make the comment "the smoke is a bit dramatic" while cauterizing me. It was her way of checking in with me to ensure I was okay with it (I was.) She even showed me what she removed. It was the first time she's ever had a patient who wanted to watch, and the first time I've been awake during surgery. It. was. AWESOME. If you can tolerate it, and you have the opportunity, I highly recommend it. It was truly empowering to not lose consciousness during a significant bodily event. It's worth nothing, 8 years ago (before my first treatment), I would pass out from a blood draw. I hated needles. The sight of blood made me lightheaded. This feels like a weird and proud accomplishment in bravery. I'd be lying if I said I weren't squeamish about it at first. My curiosity and anxiety were certainly at odds with each other, and I said as much. But over time, my surgeon put me at ease. She seemed to really enjoy the conversation, and worked on me like someone who enjoys crafting and shaping. We agreed that we are kindred spirits, more driven my our curiosity than by our fear. It was lovely. In related news, AC-T chemo will start in about 2 weeks, and it will be pretty intense. Luke and I are definitely going to have to dig deep over the course of 20 weeks while we adjust to that new new normal. It's going to be a long road, but it's worth the long, healthy life ahead of me. Things to celebrate, things to grieve4/22/2020 Surgery last week went very well in that I had minimal pain, and very few lymph nodes removed. We were able to confirm there is no evidence of cancer having spread beyond my breast, which is great news. That singular bit of news made my week. I was thrilled beyond belief to know my life wasn't in imminent danger from metastasis.
In my follow up today, I was informed we didn't get it all out last week, and that some remained in my skin. Tomorrow I will have that section of skin removed. I was also informed that chemotherapy would be the standard of care for my tumor, given my post-surgical pathology report. Lastly, looking at the full report, it appears to be the same tumor I had nearly 7 years ago. I knew I was a tenacious person. Apparently, persistence is literally in my DNA. Tomorrow, I should have a better idea of the timeline of treatment. As I am in the Bargaining stage of grieving, I'm in full blown research mode; meaning I am looking at every possible form of treatment available, and trying to come up with what I believe is the best plan possible. I don't do well with authority, so I'm not likely to take a prescribed plan at face value without me understanding the pros/ cons, and viability of each potential path. At the threshold4/14/2020 It is surgery day. I am grateful to have the surgery I need in the midst of a pandemic, while also sad to have to do this alone for the same reason. I learned from my first diagnosis that surgery is really only the start of the road ahead.
While I am very ready for this and so grateful for the pace at which we have been able to move from first appointment to surgery (2 weeks), I am also still grieving and processing everything, because it is all happening so fast. When I wake up, I will know whether or not it's in my lymph nodes, which also means I will know if chemo is part of the plan. I usually love speed. And right now, all my mind wants is slowness and quiet space. Update of what's to come4/11/2020 Surgery is tentative scheduled for Tuesday. I'm using this weekend to celebrate my body as much as I can, in anticipation that I will lose some functionality. In addition to having the new cancer removed, I will also have some more lymph nodes taken, and the rest will be radiated.
I will have more physical limitations as a long term side effect of treatment. The first time I went through this, I didn't understand the gravity of having permanent changes to my body. I kept thinking of treatment as an acute and fleeting process, rather than a life-changing endeavor. More than anything I just wanted to get through it and get back to living life, without understanding how different life would be on the other side. This time is different. I have the earned perspective of someone living with long term side effects, so I am far more cautious and fearful of what's to come. There is a 30% chance I will experience lymphedema, and there is nothing I can do to prevent it. The tissue in my chest and underarm will permanently contract due to radiation. The idea of any physical symmetry feels so far out of reach. And, I feel like I have no choice but to proceed. This weekend is one of both gratitude and grieving. I am so grateful for the functionality I currently have - the ability to hold my children with both my arms; to do pushups, handstands, and reach for things above my head; to swing my arms wildly as I dance with my tiny family. I am also grieving the loss of these things, recognizing the body and function I have today won't ever be the same after Tuesday. AboutSnapshots in time across a span of years managing breast cancer Archives
June 2020
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