Straddling Both Worlds

I wish I could share glowing, heartwarming memories about Art Bra 2019 with you. There are some, absolutely, but another lesson was also learned that night, one not so rose-colored.

Until coming off stage, I was indeed surrounded by my new breast cancer sisters, feeling understood and supported in a new and powerful way. Every single one of them was breathtakingly beautiful. The joy I felt for them as they worked that runway was overwhelming as was my own trip down the aisle.

I’d celebrated being finished with chemo and surgery, the strange victories of living 1 year and then 2. But, let’s be honest, I wasn’t really celebrating, just appreciating the support and trying to make the best of an incredibly impossible and painful situation. I hadn’t celebrated the grit and tenderness that remain forever after breast cancer. The runway felt like that sort of celebration, finally something I could really participate in.

quoteOnce I came off the runway to greet my family and friends, I immediately realized what a different person I now am.

I used to be known as the ultimate party girl, drinking, dancing, and getting into mischief until the sun came up. I did this regularly, in Boulder, DC, and in Austin. I’m the one you called not when you needed a shoulder to cry on but instead when you wanted to drink and dance the memory of him/her/it/them away. I abused alcohol but I wrote it off as fun. Once I started abusing alcohol to numb the pain and fear of cancer, I realized what a mess I was making of my life. I started making changes in early 2019 and things have gotten much, much better for me.

While I still love a rowdy night on the dance floor and a wine night with my girlfriends that lasts until 4am, I often feel I am straddling both worlds in an uncomfortable way. I know I need to tone it down but my lifestyle, social circle, and even family life has never been one of moderation.  I don’t have terrific self-control and maybe never will. But, I need to heal my brain and I can’t do that if I’m wasted.

Art Bra meant so much to me so I was disappointed when I realized many of my supporters were not celebrating for the same reason as me. I felt isolated from my most precious people as they partied and drank and the night disintegrated into the usual diaspora of stunted communication and ghosting.

It seemed they missed the point. And why wouldn’t they? They’ve never gone through this awful thing. They’ve never been scared like this. Maybe I hadn’t articulated the significance of the night. Maybe they just simply don’t or can’t understand how things have shifted for me.

I’ve been told many times since Saturday that I should appreciate the intention. My friends got together to rally me, some going far out of their way, paying a lot, and traveling long distances, and I do appreciate it. But, appreciation can get muddled when the outcome is so far from the intention.

The lesson learned is this: Sometimes things happen to you that change the very composition of your personality. You can’t unknow something. You can’t always go back. The world around you might need to change a bit too for it to remain intact. Moving forward can look a lot different than looking back.

2nd Birthday

Hooray! We’re alive! Is it strange to also be excited about not dying? We’re accustomed to celebrating life in our culture but how often do we get to also celebrate not dying?

They are the same, after all; living and not dying. Marinate on that for a minute.

On Friday, June 7, I will reach the 2 year mark from my final Herceptin treatment, the date after which my doctors started the clock on my survival. Most breast cancer recurrences happen within 5 years. Because my cancer was HER2+, 2 years is instead an enormously important milestone for me. (Five years is still a big one for me too.)

Why? HER2+ breast cancer is aggressive and has a higher rate of recurrence than other types of breast cancer. Because it tends to be faster growing, the time to wait for it to come back is also faster. At 2 years, my doctors take a big sigh of relief and so do I. It didn’t come back yet so there is a better chance it won’t.

If you get to the 2 year mark without a HER2+ recurrence, you’re not in the clear. You’re never in the clear. But this Friday is the day a tiny bit of this planet I’ve been carrying can be put down. That tiny bit sure has been heavy!

As the unpleasant anniversaries of my illness begin this summer, I’m taking a different approach. Instead of moping through days of sad and scary memories, this year I have a day to truly celebrate living and not dying! It even feels a bit like a 2nd birthday.

My day was given to me by my doctors. Maybe we should all have one just because.

I don’t need a gift more than that but if you want me to squeal with delight at my big “2nd Birthday” Party called Art Bra Austin supporting the Breast Cancer Resource Center, I’d sure appreciate it. Art Bra is SATURDAY!!!

Photo by VINICIUS COSTA from Pexels

The Murky Next

New normal.

That is the phrase for the phase I’m now in. It took a long time to let that phrase sink in and even longer to allow it to be applied to me. I went through treatment like I go through anything difficult: laser-focused on completion, hyper-diligent of details, emotional but trying my absolute best. At the end, I assumed I would pick back up my crown and move forward unscathed. I always considered myself resilient.

My medical team didn’t mention when I finished treatment that my life wouldn’t ever look like what it did before. Why would they? It would have been too depressing and I wouldn’t have believed them. The shock of it even happening made visualizing a new life incomprehensible back then.

A year went by. I still didn’t feel okay. Crying uncontrollably, drinking too much, staying in bed for days…I needed to make changes and fast.

In October, I decided to metaphorically #konmari my life. I began removing things that didn’t spark joy, even precious things like my relationship. New year came and still I didn’t feel enough progress had been made. The nagging sensation of faking happiness led to emotional outbursts and then waves of shame and grief. My mental health was in serious trouble. I decided to finally reach out to an organization equipped to guide me through this troubling and unexpected phase, the Breast Cancer Resource Center.

What’s important to note here is that I have been incredibly supported throughout my cancer journey. My friends and family were there for me comprehensibly. But, when treatment was over, it seemed hard for my support system to understand my continued pain and hard for me to articulate why I still felt pain. For all of us, the words just weren’t there.

I told my navigator at the BCRC that I should have reached out sooner. She disagreed. She understood that I just wasn’t ready and she insisted that reaching out at all takes a lot of courage. She set me up with all kinds of resources that I could explore, specifically for women in the phase after active treatment (i.e. the rest of my life). To the BCRC, that phase is a real thing. They had the words that I lacked.

I’m looking forward to sharing what I’ve learned about survivorship and how I’m crafting my new normal with help from the BCRC. I’d also like to ask that you help make sure the next girl, at whatever point she needs it, gets access to BCRC services. Please help me pay it forward by making a gift to BCRC. I’m participating in their Art Bra event (more on that later). With my whole heart, I believe this organization deserves our support.

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New Cold Cap Resources

A fellow cold capper friend and advocate started a great new online support group, Facebook page, and Instagram page. She just featured my story! Such an honor! Join us!

My IG story:

I sat in the lot of the 3rd radiology center that week. It was hard to get out of the car. Before I did, I called my Mom to say, “We have to try. Even though they say it won’t work, we have to try.”

I had spent the previous day at chemo training, genetic testing, and fertility discussions. I came home and broke down completely. After a therapeutic cry, I did a web search for “cold capping.”

I had heard about it through a friend, though she didn’t have specifics. I asked my oncology team about it and was met with curt dismissal. “It doesn’t work,” was the response. “Not for your kind of chemo. Don’t waste your money.” Or the worst, “Focus on getting better, not how you look.”

My web search that night led me to Penguin Cold Caps. I devoured their website and got up to head to that parking lot the next morning for more scans with one thing on my mind…saving my hair.

Having something like cold capping to focus on during chemo was a much-needed distraction. Proving wrong those that tried to dissuade me was also sweetly validating. It worked! I didn’t lose my hair. The privacy I maintained by keeping my hair was like a gold crown. That I could still recognize myself were the jewels in that crown. But, the real majesty of cold capping came afterward.

I began connecting with newly diagnosed women, serving as a rare cold capping success story. I now get to help others defy chemo hair loss. That’s where I found my strength. Educating the world that #itsmorethanhair is how I’m truly healing.

If you’re in the Austin, TX area, please join our local Cold Cap Support Group too!

The bell as a symbol

 

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I keep the bell my work family gave me on display so I have a constant reminder.

I’m helping a friend use Penguin Cold Caps. She is triple positive like me and is nearly finished with 6 rounds of TCHP. I inquired of one of her chemo nurses about ringing the bell when she finishes. I hadn’t heard a bell ring during her treatments which I found strange considering the high volume of patients this cancer center could accommodate. Surely people finish every day!

The nurse told me that they didn’t do it anymore because, “some people went a little overboard.” For once, I had nothing to say. I don’t believe I’ve ever heard of such a hurtful, selfish policy.

There is nothing more powerfully healing than the sound of that bell ringing for finishing cancer treatment. Nothing. That sound ringing for other patients gave me indescribable strength and encouragement. It reminded me each time I heard it that this ends. This hell ends. The louder it rang, the more it soothed me.

When I think about that sound ringing for me it still brings tears to my eyes. That was the most sweet and satisfying sound I have ever heard. And I rang that thing like my life depended on it, because, basically, it did.

Did I “go a little overboard”? Damn right I did. I earned it. We earned it. And everyone else in the room needed it too. If there is ever a time to overdo something, it is that moment.

What do you get to do when you finish the grueling task of chemo? I guess, at that particular cancer center, you just say, “Cheers, thanks a lot.” Then you pick up the planet that you’ll be carrying for the rest of your life and go home. No cheering. No celebration. No encouragement to others still in the thick of it. Nothing to honor the enormous accomplishment of completing the hardest thing you’ll ever have to do.

Of course, patients with good support systems celebrate in other ways I’m sure. But, what about those that don’t? It is very sad.

The bell, that sound piercing through the silence, is a valuable symbol. It honors the patients’ battle and it also pays tribute to the battles that aren’t won, the raw difficulty of both. It announces to the room that progress is made every day and reminds that room to not give up. Most importantly, it celebrates the person ringing it. They did it!

I hope that treatment centers don’t take that away from us and I hope that this treatment center reconsiders their silent policy. Ringing the bell, loud and proud and as overboard as possible, is the farthest thing from a disruption.

MTHFR

While it is unlikely I’ll ever know why I got breast cancer as such a young age, collecting information on how I can avoid it coming back again is a pastime to which I am ferociously devoted. There is much information to digest, most of it vague or contradictory. There are so many variations of breast cancer and therefore nearly infinite variations on how to prevent recurrence.

One of the things my primary care doctor recommended was to be tested for a genetic mutation commonly called MTHFR. Sign me up, obviously!

The two most common MTHFR gene  mutations are C677T and A1298C. If you are mutated on 1 allele (heterozygous), you may have mild symptoms. If you have mutations on both alleles (homozygous), symptoms can be more severe.

I have a heterozygous mutation on both C677T and A1298C (also referred to as compound heterozygous). This is considered by many doctors to be the worst combination of mutations and puts me at risk for some pretty unfun stuff, some that I’ve probably already struggled with and others a risk for the future.

What do these 2 genes do exactly? This is where it gets complicated but the short story is that MTHFR is an enzyme that is responsible for methylation, a critical process in neurological and cardiac function as well as detoxification, cell repair and a whole laundry list of other super important stuff your body needs to stay alive.

Sleep, anxiety, and other psychological challenges (even Alzheimers) are associated with a mutation on A1298C. This is because the mutation affects the creation of neurotransmitters like dopamine, serotonin, and other stress/coping-related hormones. C677T is more closely associated with susceptibility to cancers and heart disease.

In other words, in the big poker game of life, I got dealt a shitty hand. On the bright side, combating my genetic predisposition to poor health is relatively easy. I simply need to give my body the stuff it lacks but already methylated (since that’s the part my body slacks on). I need to supplement methyl-folate  and methyl B12.

One downside is that methyl-folate can make you feel worse before you feel better. I mistakenly started off with too high of a dose (1000mcg/day) and ended up sleepless and jittery. I went off of the supplements for 6 months and am now re-starting with a very low dose (334mcg/day). I’ll increase my dose up to 5000mcg/day as my body allows. Knowing how I felt on just 1000mcg/day, I may never reach that dose comfortably but that’s okay. I’m also taking B12 as Methylcobalamin, which is a more easily absorbed version.

Being compound heterozygous, I’m likely unable to properly metabolize and detoxify pollutants, medicine, even my own naturally occurring hormones. I’m planning some rigorous detoxification processes but I’ll post more about that later.

It is hard to know where to go for help. Even doctors don’t always have all the information. Alternatively therapies are notoriously under-researched. This seems like a relatively new treatment so we’ll just have to see where it goes. Please share any useful info on MTHFR with me. I’m still learning about this myself.

Further Reading:

https://www.jillcarnahan.com/2014/02/23/health-tips-for-anyone-with-a-mthfr-gene-mutation/

http://www.mthfrtreatment.com/

http://doccarnahan.blogspot.com/2013/05/mthfr-gene-mutation-whats-big-deal.html

https://www.dietvsdisease.org/mthfr-c677t-a1298c-mutation/

Time Being

The love I thought was strong enough to get me through this is in trouble. We met only 6 months before my diagnosis so it is a shock that he stayed at all. But, he did and he was great. Not great, incredible. And then chemo ended. Physically, I started to rebuild. Emotionally, I was and still am a mess. Instead of the supportive man he was during the most physically taxing portion of my treatment (TCHP), he started to turn on me. Perhaps the price was as expected…too high.

A passage in a book I’m reading struck me as a truth so vivid and terrifying I had to put it down for a while:

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I don’t know how much time I have. Neither do you. A unique difference between me and most others is that, because of cancer, I have a deep and visceral sensation of time as it is happening. I feel it all around me, in every breath and mostly in every smile. I also feel it in every moment of sadness. I can feel time going away. It causes me enormous stress, which I try to relieve by packing my life so full of things that I won’t feel cheated when the time is up.

I tried to define clear goals and hoped that he would support them or even share them. But, he didn’t and that hurts.

While it is completely unfair to expect anyone to share the sensation of circling the drain with me, those around me must be above average in the gentle department or they must leave. I admit I’m fragile, sensitive, and anxious, personality flaws that don’t usually do well in the relationship game. The instability of my life is on par with California’s fault lines. I needed extra love and instead I got yelling, leaving, and confusion.

Eventually, the hurt began to span weeks, months, and now even years, time I wasn’t sure I’d have and certainly not time I wanted to waste. Was cancer the culprit? Yes, in a way. Cancer took everything from me and left me to pick up the pieces where they lay. Cancer made me need more out of the time I have left, a lofty predicament indeed. But, cancer also opened my eyes to the preciousness of time and how I had been spending it. There just is no going back.

I’m definitely struggling with letting go of the only comfort I had during my terrible treatment. But, like all things – winter, reading War and Peace, even cancer – this too shall pass. I hope there is something better waiting for me on the other side.