love is health
The Second Time Around12/26/2020 It is surreal, amusing, and bittersweet to read old posts on this blog from the time of first my mastectomy in 2013, and compare it to my current experience. Although it was just 7 years ago, I feel like a very different person in a completely different body. While a lot has changed, some things remain the same.
I am still filled with gratitude, and healing fast. I am thankful for the ability to shower and shave again, be cozy at home, and be well enough to watch my girls literally tear through Christmas morning with excitement and glee. And as always - I am so lucky to have Luke as my rock and partner. Cancer either makes or breaks a marriage, and after this year I know nothing can rupture us. Luke is my best friend, and the most impressive human I will ever know. This was the hardest year of our life together, and I am taken aback by how he navigated it with grace, authority, and grit. He's a fairly private man, so it's a privilege to witness. My pain is well managed, and I haven't been on prescription pain killers since the day after surgery on the 18th. (I hate how opioids make me feel, so I try and get off them as soon as I can). Although I have some surprising scapular pain, I can already raise my arms above my head, which is an accomplishment for anyone after breast surgery. Much like in 2013, I go for walks to get my blood flowing, and am pining for the time when I can get back to regular exercise. My drive to return to fitness is nothing new. I don't want to give the impression all is sunshine and rainbows. It is not. There are most certainly struggles that come with this mastectomy. But if I'm being totally honest - I'm really tired of focusing on them. I've had a lot to grieve this year, and focusing on the things I'm grieving is exhausting. I just want to get past this moment.
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No looking back.12/11/2020 This is heavy. Maybe it's the clouds. Maybe it's the long winter nights. Perhaps it's that I was off letrozole for a week while it was lost in the mail. Whatever the case - this is where I'm at right now, for better or worse.
It's sinking in that I'm going to be in treatment and surveillance for the rest of my life. I'll always be on oral chemo to prevent recurrence. I'll always have some sort of scan, exam, or test each quarter, and I will have to deal with the anxiety that comes with waiting for results. Li-Fraumeni Syndrome (LFS) is a real motherf*cker. I was so looking forward to the end of this year, because the end of 2020 meant the end of active treatment. It signaled the completion of 5 surgeries, 5 months of chemo, and the rebound of my suppressed immune system. I have been so focused on just pushing through each phase until active treatment was done. Get through AC chemo. Finish Taxol. I wasted no time getting back to work, then cruised through my ovary removal. My mastectomy is next week. December felt like the last leg of an Ironman. I just needed to cross the finish line. Just. Keep. Running. But there is no finish line. It hit me today while planning out my next procedure after my mastectomy. As my new care team member (I collect physicians, lol) talked me through the procedure prep - what I could eat and when I could eat it, what would be done to me while I was sedated, recovery details - I zoned out for a moment to recognize this is the rest of my life. There will never be an end to prevention and maintenance. Because of LFS, I will always need to be very cautious and vigilant. This realization just about broke me. One quarter it will be an MRI, the next, a bone density scan, the next a dermatological pat down, a colonoscopy, endoscopy, ultrasound, another MRI. With each birthday, rinse and repeat, ad nauseum. There's no more "wait and see" when it comes to bumps, lumps, or any symptoms out of the ordinary. Ordinary is gone. But there are plenty of opportunities to find cancer again, or appreciate near misses as they happen. Speaking of near misses: When my ovaries came out, there were 2 benign tumors on one of them, in addition to multiple inclusion cysts on both of them. 90% of ovarian cancers start as inclusion cysts. I felt like I dodged yet another bullet. I can't help but wonder what pathology will uncover after my mastectomy. I certainly won't be surprised if there's a finding. I'm not hoping for it, but after my oopherectomy results, the reality is really setting in that my body isn't great at preventing tumors. There's no going back to normal. I knew I couldn't return to life as it was before I had cancer in 2013, but there was part of me that still believed I could return to life as it was before this year. We're all yearning for life pre-pandemic, yet that's not an option for me. My LFS diagnosis means there will never be a year that passes when I don't have to deal with a battery of scans, tests, and procedures - and the anxiety that comes with them - to catch cancer early should it emerge again. Of the losses I've experienced related to cancer, this one may sting the most. Being diagnosed with LFS means I've lost the privilege of believing my likelihood of getting cancer again is low. While I take a lot of pills, that's the toughest one to swallow. Routine as an act of appreciation10/25/2020 Going out to a restaurant for the first time in 6 months. Giving my sister a hug on her wedding day. Hitting the skate park. Going for a hike. Biking to the mountain. Getting back to a predictable work schedule. Holding my children tightly. Waking up to hands that feel normal, a body that feels strong, and a life that feels familiar, pandemic aside.
It has been a month since completing chemotherapy, and I have wasted no time trying to recreate a sense of normalcy, even if just for a little while. Spontaneous at heart, I used to rebel against anything remotely routine. Yet for this month, all I have wanted and worked toward is a pattern of predictability. I know it's ephemeral, which makes me appreciate the routine even more. Everything is about to change yet again. I'm staring at a few months of recovery. Before the end of the year, I will have 2 more surgeries aimed at preventing recurrent or new tumors. The result of these will be surgical menopause, and the landscape of my chest will change yet again. My Li-Fraumeni Syndrome diagnosis means the likelihood of having another tumor in my lifetime is unfortunately high. So, I'll take the hard steps needed to reduce my risk as much as possible - even if that means giving up my only healthy breast, and young ovaries. I intend to live a long life, albeit in a body that will feel so different come 2021. For us young survivors, cancer treatment ages us far more rapidly. Menopause comes sooner. Joints ache. Chemobrain slows our thinking. Our metabolisms decelerate unpredictably. And in some cases (like mine) our hair turns gray prematurely. Our bodies feel foreign to us. The athletic, energetic, spirited body I once inhabited is softer, slower, and collecting scars. However, I appreciate how this vessel feels right now because I know there is so much to be grateful for. I can still move. I have all my limbs. I can bend over to pick up my youngest child and hold her. My children can fall asleep on my chest. We can still have living room dance parties in our pajamas. I have the privilege of mobility, of having all my five senses - of being in a body that tolerates change well, recovers fast, and is tenacious down to its core. So I enjoy what I can, when I can. Last night that meant shaking my ass to Baby Got Back next to my mom on the dance floor of my sister's wedding. Tomorrow, and for the next week, it will mean embracing a routine until surgery day. It will be here sooner than I know. The final countdown9/17/2020 I'm a week away from finishing the chemotherapy leg of this journey. I feel like a barn sour horse - I can see my base in the distance, and am sprinting toward my return to it. Emotionally, I feel so ready to be done with chemotherapy, yet I'm painfully aware some of the side effects will hang on to me for months and years to come. I'm also cognizant of the fact that chemo isn't the end of the road - there are still several surgeries to get through. This can't restrain my optimism though. I'm alive, I'm energetic, and I have my faculties about me. I'm still grateful, and so ready to celebrate the end of this section.
Speaking of side effects - Taxol has been much kinder to me than Adriamycin + Cyclophosphamide were. I am so fortunate these past 11 weeks have been completely nausea-free. I've (mostly) had my energy, and have been fairly functional. While my skin is drier than the AZ desert, hands itchier than a pile of red ants, and brain slower than tortoise - I would take these over the GI upset (and, you know, hospitalization) of May and June. So there I am, standing at the threshold of the next stage - so close to the end of chemo. I'll see you at the finish line. Change and Gratitude6/24/2020 Has it really already been a month since the last update? My, how time flies. So many good things have happened since being discharged from the hospital.
There is still a lot more change on the horizon. Nothing is predictable; everything is in flux. However, many hands make light work. To Everyone who has helped us, be it by sending money, meals, gifts, healing thoughts/ prayers, healthcare advice, or staying with us - you will never know how much you have helped us. We are just so incredibly grateful. We very much consider your support as one of the many good things happening in life right now. Thanks for being our silver lining. Relentless5/28/2020 I'm beginning to see a very obvious pattern in my life that started since before I was born.
Coming from a large family, my parents took "certain precautions" to ensure they didn't have a 6th child. However, in spite of that, my mom became pregnant with me. During her pregnancy she was told her health was in danger and that the pregnancy wasn't viable. She ignored her doctors recommendations to terminate the pregnancy, put her life at risk, and birth me uneventfully. I was her easiest pregnancy. When I was around age five or six, I accidentally swallowed a penny, which lodged itself in my throat. Being the exact size of my airway, had it moved even a little, I would have choked. That car ride to the ER had my parents on pins and needles, as they struggled to keep an energetic, young me still. Just a few millimeters is all it would have taken to completely occlude my trachea- a pot hole, a sudden stop. From what I was told, I was bouncing around the back seat of the car in excitement while my parents white-knuckled their way to Phoenix Children's from north Phoenix. It was an uneventful penny extraction. My dad called me his little piggy bank for a while after that episode. Around age seven, while crossing 51st avenue with my older siblings, a car cut around the stopped traffic we created. My sister Nora grabbed my hand at the last minute, pulling me up toward the sidewalk as my other sister was stricken by that vehicle. (She lived, albeit with a story to tell). I was unscathed. I managed to avoid near death experiences until 2013, when I became neutropenic with a viral infection, and was stuck in the hospital for 5 days. My white blood cell count was so low my life was endangered. I had no immunity to fight the infection, and simply had to wait it out. Eventually my white blood cell count rebounded, and I lived to tell the tale of how I got (the childhood illness) Croup at age 30. That brings us to now. I'm in the hospital again for neutropenia and sepsis. My white blood cells dropped, which opened me up for an e. coli infection, and my body responded with systemic vengeance. Normally, sepsis creates a situation where your immune system attacks your healthy tissues, leading to organ failure, shock, and death. In this instance, we caught it so early that I have no significant tissue or organ damage. As one of the doctors so eloquently said to me, "your body was in complete control." Nonexistence keeps coming at me, and I keep circumstantially evading it. And while I'm not about to make loud declarations about Life's Purpose or Meaning, it does make me feel wanted, even loved. I don't claim to understand the way the universe works. Maybe this is a beautiful, intended, and elaborate design. Maybe it's well organized chaos. I'm frankly not sure that matters. What matters is that I keep getting more time - another chance, another opportunity to enjoy life's pleasure. And for that I am infinitely grateful. Here's to dodging yet another bullet. The way it feels: cycle 15/12/2020 Everyone deals with chemo differently. This is how it has affected me so far.
While receiving chemo, my muscles almost immediately took note. They would twitch and glitch in resistance, like they knew they were being poisoned. It was a bizarre feeling I hadn't anticipated. Between adriamycin injections (I had 2), I needed to take a break to address the fact my chest was tightening, so we (my nurse and I) allowed that feeling to subside before proceeding. To make up for lost time we cranked up the speed of (chemo drug #2) cytoxan from a 1 hour drip to 30 minutes, only to be thwarted by sinus pain telling me I can't handle that speed. (Imagine feeling like you just dove into a chlorine pool without plugging your nose. That's what it felt like. Strange, no?) What was supposed to be a 3 hour therapy session took closer to 5 hours to account for the breaks I needed to put my resistant body at ease. My nurses were awesome, accommodating, and gentle. I appreciate that they were cautious with me, despite my desire to just keep going. During the days following, each of my main organs did a roll call. This is a challenging feeling to describe. They weren't in pain per se, but they weren't unnoticeable. It's like they each took turns speaking up, intervention style, to say they are concerned for me. First it was my heart through fleeting chest discomfort, then my intestines and ovaries. Eventually my kidneys, bladder, and liver all said "hey - is everything okay?" While it wasn't painful, I felt compassion for them, as I knew they were all saying "Hey! what's going on up there? Why did you poison me?" That's a challenging thing to explain to one's own body. I've been taking much needed naps. These drugs are toxic, (specifically to the heart), so energy wanes. My peak energy seems to be within the first 3 hours of waking, them dwindles over time. Although nausea has been mild, my digestive system is a hot mess. Imagine feeling like you just ate 2 XL pizzas (ouch!), but that you're hungry; however you don't want to eat because the idea of eating sounds like more pressure/ pain on your digestive system. It's like that. I'm proud when I can finish a small meal, and grateful when it doesn't make me feel like I am going to burst. I am so grateful to not be vomiting (hooray for the little wins!), though sometimes I wonder if doing so would make me feel better/ less full. Cognition is slower. I only have patience or bandwidth to process one task at a time. It's forcing me to slow down, be present, and not sweat the details, which you can imagine is very counterintuitive to who I am. But, all in due time. There's no rush, no sense of obligation, and utter patience/ compassion for where I'm at. All in all, it's not so bad. I'm not in pain, I'm not vomiting, and I have energy enough to play with my babies on occasion and get some work done, so I call that a win! 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. "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. AboutSnapshots in time across a span of years managing breast cancer Archives
June 2020
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