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.

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.

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.

 

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.