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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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/

Proverbs 16:27

Everyone reacts differently to traumatic situations and everyone has different coping mechanisms that align with those reactions. Cancer has reiterated something I probably already knew about myself…my thoughts go to a very dark place if left to fester.

Cancer also pointed a spotlight at something I had taken for granted. I had always been capable. I got things done. I’m Leslie Knope, getting involved and sometimes over-extending myself. When I got cancer, I was no longer able to trust my capabilities. I was weak, physically and emotionally. I was, for the first time in my life, fragile. And it didn’t sit well.

So I set a nearly impossible goal, a goal beyond my physical strength and experience level. I would turn a place beautiful using power tools and my own stubborn grit. I would rebuild my life in a most literal way. Chemo and surgery and depression be damned. I would do whatever the fuck I wanted to do; just like before, only a little harder.

My mom, who had already given me everything, gave me one more precious thing: the condo next door.

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There were probably many who thought this was a lousy idea. There were even a few who didn’t think I could pull it off. I mean, I had just had 6 months of chemo and a double mastectomy. Should I even be on that ladder with a crowbar?

That is exactly why I did it. I needed an accomplishment that exceeded even my own high expectations. I also wanted proof that breast cancer can’t hold a woman back, not even close. Mission accomplished.

My uneventful Tamoxifen experience

In late July, I took my first dose of Tamoxifen. It was strangely ceremonial because I had for so long considered the drug just short of a nightmare. It was one of those moments where you just do it because you’re told and don’t have any other options…like chemo…like surgery. I was terrified but, frankly, just too worn out on the topic to resist any longer.

Because I’m pre-menopausal, my body is still creating plenty of estrogen. But, my type of cancer thrived on estrogen. Removing estrogen from my body can “starve” any pesky cancer cells that may be still floating around trying to take up shop somewhere in my body and kill me. That’s where Tamoxifen comes into play. The 5-year daily pill is able to target and protect breast cells (or rogue breast cancer cells) from estrogen uptake without tinkering with other important things that need estrogen like bones.

Why was I scared of a drug known to significantly reduce chances of recurrence of estrogen receptive breast cancer? Some women do not tolerate the drug well and I had heard of a myriad of awful side effects. The official list of side effects were very similar to going through natural menopause, but more severe. Loss of libido, mood, and skin changes were top concerns for me. I was afraid it would turn me into a tired, cranky, dried up piece of toast.

My doctor told me that I should at least try Tamoxifen. My other options were removal of my ovaries or doing nothing, treatment options that felt either extreme or careless.

The first month on the pill I had night sweats and mood swings. Luckily, my experience was nothing like what I’d heard from other women. It wasn’t a total breeze. Hormones are delicate things after all. But my body adapted. It was much, much easier than I expected.

Lexapro, which I had already been prescribed, can help with some of the side effects. My 3-month supply helped level out the bumps I believe.

I’m nearly 6 months in and I feel good. I have energy. My skin is in good shape. Sex drive is in full swing. Not so much as a hot flash to mention anymore. One added bonus is that it has nearly cleared up my debilitating menstrual cramps and lightened and shortened my periods significantly. I cling to these sorts of silver linings.

I did the right thing…kept an open mind, had sex regularly, maintained fitness, all the things that a healthy girl my age should do anyway. The peace of mind alone should have been enough, but, as always, it wasn’t enough for me. I want to enjoy life, not just live it.

Yesterday I went back up in the aerial silks for the time in 18 months. Being back up in the air, feeling a tiny bit of the strength I used to have, felt so blissfully familiar. As enormously as things have changed since May 2016, it was a relief to know that some things, the important things, could stay the same.

 

Artificial Happiness

After the 6 rough rounds of TCHP and my surgeries I was quite low. I couldn’t sleep, didn’t want to see people, cried a lot. I had all the characteristics of depression and possibly PTSD, things my doctors assured me were normal after experiencing my life crumble to dust without notice. I believed them when they said things would start looking up but I also wasn’t too proud to admit I could use some help.

Strangely, my cancer team did not feel that my mental health should be included in their treatment plan. They recommended I see my regular doctor. But, I didn’t have a primary care doctor. Remember, before cancer I was the image of health and fitness. It was quite devastating. It took quite a stern demand but I was finally able to get help.

My oncology nurse practitioner prescribed me 10mg of Lexapro daily, an anti-depressant and anti-anxiety pill. Almost immediately, glory hallelujah, I slept. It was just what I needed. However, after about a week of deep, restorative sleep, I began to notice that I was emotionally flat. Nothing mattered. I couldn’t enjoy sex. Information was just absorbed. I basically felt numb. While this was not a pleasant feeling, I decided that it was better than how I had felt before. For the first time in my life, I wanted to feel nothing instead of something. That’s how low I was.

After a month of nothingness, I reduced my dose to 5mg a day. Things started feeling more normal. This is important because this dosage is half of the lowest dose recommended by the drug maker. You can do that, you know. With my nurse practitioner’s blessing, I took less and it worked. Take that, pharmaceutical companies!

For 4 months, I allowed my brain to feel artificially happy and I’m so glad I did. This also coincided with beginning Tamoxifen, which I believe lessened my side-effects significantly. I’ll post more about Tamoxifen next.

Get the help you need by any means possible. Demand it. Negotiate. Bribe. Scream. Yell. Cry. Do whatever you have to do to get the help you need. You don’t have to suffer.

 

 

 

I’ll do it a thousand times again

June 7, 2017, my (hopefully) last chemo treatment ever, came and went. I completed 6 rounds of TCHP and 12 more rounds of Herceptin. I’ve been doing this every 3 weeks for 1 year. Add 3 surgeries, probably a hundred needle pokes, nearly a million dollars, and over a bagillion tears and it ends up being quite an eventful year. It must sound like a monumental understatement to say that I’m glad it is over.

I anticipated it being a day of immense relief and joy, like I would have pride in accomplishing something so hard and celebratory to not have to do it anymore. Instead, I felt tired, ready to get on with it, and very, very worried. Treatment is over. There is nothing more I can do to keep cancer from coming back. In fact, if the cancer comes back, it could be Stage 4 and terminal. Instead of feeling elated at my last treatment, I felt solemn as this realization sunk in.

Immediately, my busy mind got to work cataloging coughs and aches and blaming a metastasis. A sore spot on my spine landed me back at Radiology for a bone scan.

Negative. Likely a result of the Shape of You Videodance class at Ballet Austin. Or was it that fall on the boat? Maybe it was that heavy, new bathroom door installation.

Remember, Rach, life is getting back to normal. Sore backs are normal for someone who dangles from aerial silks, stumbles around on boat docs in various states of sobriety, and flings herself across dance floors in 7 inch platforms.

Worrying about this for the rest of my life is just simply not going to be sustainable. I never worried about being hit by a bus or murdered before cancer so why start now?

When my busy mind starts to get the better of me, I remind myself that I did it. And I’ll do it again if I have to. I’ll do it a thousand times, for myself and my parents and Cindy and Cinco, for all the people that helped me this year. I’ll worry about it when it happens, not before.