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 Struggle Is Real

I used to be smart, articulate, with an above average memory and an excellent aptitude for multi-tasking. My job requires it. The high expectation I have for myself demands it.

Which is why it is hard to admit that my brain doesn’t work like it used to.

The first indication things were awry was immediately after chemo. The challenges of those 6 months were so great that I thought for sure they would be forever burned into memory. Certainly, there are some things so awful or so heartwarming that they are truly unforgettable. But, much of the time is simply a blur, almost like it didn’t happen.

I am unable to recall details like who was there and what was said, including valuable conversations I wish to reflect on now. The emotional weight I assigned to things that happened is also missing. On the bright side, I try to view the mental void from June 2016-September 2016 as a gift, sparing me the memory of the hardest, most painful part of my life.

This far beyond active treatment, I assumed my memory issues would improve. I could tell this was not happening but only began to worry when my boyfriend mentioned he thought I was senile. I’m wondering myself.

I wrongly assume a person had a conversation with me and then feel confused when they gently remind me that “must have been someone else.” I have forgotten whole discussions where important decisions have been made. I can sense the frustration for others when I have to be given a recap. I misalign the who with the what and where.

I’m gaining an understanding of what a person with dementia must feel. The subtle nature of memory loss is, perhaps fortunately, lost on the person who doesn’t remember. Because memories construct our reality, if the memory isn’t there, the reality, for me at least, is that it didn’t happen. However, being the only one who doesn’t retain the memory is frustratingly embarrassing. It’s hard not to be able to trust my body or, apparently, even my mind anymore.

Unfortunately, there isn’t a lot known about chemo-induced or cancer-induced mental fog aside from that it exists. I’ll continue to exercise, read, eat well, and sleep, the recommended treatment for memory loss, regardless of its origin. I may also need a hammock and some palm trees. Or maybe a nice snowy mountain with a hot tub at the end. Hopefully all I  need is a little more time.

Some excellent articles about chemo brain, if you’re interested:

https://www.cancer.gov/about-cancer/treatment/research/understanding-chemobrain

http://www.reuters.com/article/us-health-cancer-ptsd-idUSKBN18P1H3

https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/changes-in-mood-or-thinking/chemo-brain.html

https://www.mayoclinic.org/diseases-conditions/chemo-brain/symptoms-causes/syc-20351060

And, because chemo brain (and this whole unfair, shitty, no good disease) pisses me off to no end…

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.

 

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.

Smile as you walk by

Last year on this day my life abruptly changed forever. I sat in the gynecologist office and only remember him saying, “It’s bad.” My boyfriend sat in my hatchback with me in the parking lot while I cried. My charmed life was over. I just got a lot more interesting. The transition was a lot like driving into a brick wall.

There was only one way to proceed: one foot in front of the other until the end, just like before, only a little harder.

As independent as I like to believe I am, I knew I couldn’t do this alone. I called the person I knew could handle a crisis of this magnitude and she dropped everything for the next 6 months to help me.

The single most important piece of advice I can give to the women who come after me is to surround yourself with capable people before you need them. Cultivate meaningful friendships, especially with other women. You never know when you’ll need to call in your troops. Make sure you have them. I simply could not have done this without her.

As this day approached, I anticipated cringing at the date May 17. Terrible, no good day! This day caused me and many others so much pain. I wanted to skip this day. This day…I can’t even.

My boyfriend wisely reminded me that tough girls would take their day back. It doesn’t have to be a reminder of the pain but instead a reminder that I’m still here, a day to celebrate all that we did. So, I’m taking it back. My mom, so charmingly, said it is my day to say, “I won!” and then make lots of noise.

Okay, then. Noise starts now! Loud.

♫  Your life will be just fine and troubles do not stay. They get replaced with good times. Now you got a great life! Smile as you walk by. Thinking about the Day.  ♫

New Toons…in more ways than one

Maybe I shouldn’t have. I really can’t afford it. I’ve got credit card debt now and enormous medical expenses. But, happiness should not be postponed indefinitely. After all, cancer happens.

I bought myself a brand new, beautiful pontoon and today she got a pink tattoo to recognize, honor, and hopefully make up for some of the pain of the last year. I also hope this boat serves as a reminder to myself and anyone who sees it just how fast it can all be taken away, how much we should all cherish every day we get.

I asked my wise Dad if I should do it. He said he didn’t know. If floating around listening to Louis Armstrong sing La Vie En Rose in the sun is how I want to spend my time, he figured it was a good thing to consider. Happiness, he said, is a choice you make. If it makes you happy, then do it.

He told me to ask myself how much happiness it would bring to my life. When I told him how I love to watch the swan family at my boat doc, how I could sit there every evening and watch the sun set over the water and how peaceful it made me feel, I basically talked myself into it. This is how he gives advice.

I don’t know what about the boat inspired a breast cancer pink ribbon decal. I was quite opposed to pink earlier on actually. Something about gifting myself happiness seemed to require it. When a decal appeared on Etsy that also said “survivor” I was struck. I am a survivor. That’s big. I hadn’t considered it like that before. I’m in the club. I earned that ribbon. I cried at my desk at work.

I’m not a flippant spender. I don’t make decisions lightly. Something has changed, however, and it is uncertainty. I don’t know what will happen. So, I choose happiness…just in case.