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 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. I already refer to myself as a broke-down Pinto so the “toast” factor was almost too much to bare.

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 a mood swing or two. 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.

I’m nearly 6 months in and I feel great. Not so much as a hot flash to mention. 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 trillion 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 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 will 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.

Ta Da

Amputating both my breasts was a very scary decision. Research prior to making the decision mostly set an expectation of total loss of breast sensation, painful complications, numerous surgeries, and, ultimately, a strong likelihood of deformed reconstructed breasts. I was sternly warned to expect nothing and prepare for the worst.

The other day, I was reminded by my boyfriend that my decision to do it anyway, to take that risk, was courageous. I want to share with those making the decision for themselves that such risks can have positive results.

I am now nearly 8 months post mastectomy and 4 months post exchange to implant and everything is going very well.

I had no complications with surgery or healing whatsoever, perhaps because I took extreme precautions and had excellent care throughout. Perhaps because I’m just lucky. My new breasts actually look pretty darn good! They are softening significantly and even have an unexpected bounce. The scars are smooth and nearly completely hidden in my breast fold (underneath where the breast hangs down).  My skin and nipple sensation is slowly returning, though I don’t think I’ll ever have full nerve function again.

I ended up with 310cc Natrelle Inspira smooth round gel implants, otherwise known as a gummy bear implant. On my body frame (5’5″, 135 lbs.) this makes them a 34D bra size, quite a bit bigger than I started with but a nice, balanced, natural look.

Breast implants are typically placed under the pectoral muscle. When you are getting a breast augmentation, that’s cool because you have the added cushion of actual breast tissue over top of the implant. But, with breast reconstruction, there isn’t that added layer of breast and fat so the implants can move quite a bit when placed under that strong pec muscle. My plastic surgeon opted for over the muscle placement to avoid implant movement. This was especially nifty for me because it will allow me to get back on the silks faster (healing is typically expedited when you don’t have to stretch that muscle) and not have obvious implant squashing when I’m using my upper body in dance.

I’ve continued to take supplements for healing (Vitamin C, B complex, Calcium, and Gotu Kola) and also get monthly cold laser therapy (available at my Austin-based chiropractor) to reduce inflammation and expedite cell repair. I was given a scar protocol that includes 3 creams to apply every few days but, honestly, I couldn’t keep up. Scarring is minimum anyway so I gave myself a break.

My doctors were exceptionally talented and I cannot thank them enough for making me whole again. I recognize myself. I can get past this. It was risky, no doubt. Sometimes you have to double down and hope for the best.

If you’re looking for advice, I have little to offer I’m afraid. Everyone is so very different in their anatomy, desires, fears, and expectations. Shop around, educate yourself, and do what you think is best. The choice you make is the best one. Promise.

WARNING: ACTUAL BREAST PHOTOS
I decided to be courageous again and share actual images of my breast metamorphosis. Images are of both my breasts including nipples. Please do not share the images. Please click to view the images only if you are seeking information about mastectomy and breast reconstruction. Please be respectful and know how sensitive this is for me. View images here.

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.  ♫

Fear is Relative

I put on the suit and harness, walked out to the plane, and watched the ground disappear as the plane rose. I hadn’t wanted to. I’m not a thrill seeker. We were celebrating the very special woman who orchestrated my cancer survival so I did what I was told.

20170516_121508
White knuckles anyone?

They opened the door and I took deep breaths of the fresh air. I felt tears. This, my mind’s voice reassured, was not nearly as scary as the last 12 months. But, the sensation felt familiar.

The feeling of powerlessness and anxious anticipation, not knowing what will happen but doing it anyway, is commonplace to me now. This isn’t like the old me. I used to be in control and preferred it that way. I’ve changed.

Fear is apparently relative. I’ve already done something incredibly scary, perhaps the most scary thing I’ll ever do. Nothing can scare me more. Not standing in front of an audience with no pants, not spiders or sharks, not even skydiving.

The night before wasn’t sleepless. I felt oddly calm before and during my jump, even during the free fall. I didn’t scream or close my eyes. I’m so glad I didn’t let the fear ruin it for me. I looked around and it was beautiful. I let go and it felt okay. It is a good lesson for all of us.

And at the end I hugged my people. Will Smith was right…the best things in life come after the maximum fear.

You know? You know.

Nearly everything I own fits far differently or not at all. My friends are having fun shopping in my closet. I’ve given away many of my tiny sundresses, bathing suits, and even my pretty lingerie. My bra drawer took the hardest hit. I’ve got nothing but a sports bra that was too big before my mastectomy.

This week, after I got the A-OK from my plastic surgeon that surgeries are finished and this is the size I can expect to stay, I went bra shopping. Petticoat Fair is known across the country as one of the leading bra fitters so I couldn’t wait to support my local bra slinger in person. They were charming when I went in pre-mastectomy to get info on therapeutic bras. They even work with insurance! These ladies are simply the best around.

My patient and gentle fitter asked a lot of questions so that I got not only what I wanted but also what was allowed per my surgeon’s instruction at this stage of my healing. She measured me and brought in a ton to try on. She stayed to adjust straps and check fit, making sure that every detail was supportive, comfortable, long-lasting, and pretty. I was glad she expected my new bra to be ALL those things equally.

I ended up with an every-day molded cup wireless bra that would be smooth even under tight, thin knit. It doesn’t press anywhere on my breasts or incisions so it won’t be painful or affect healing. I could have probably gotten one in every color since they are so versatile. I also got a sexy, black French lace bralette from the sale bin. These things can be expensive, especially those with fancy lace or trendy design. I was glad I was able to get one fun thing at a discount. (Heads up…French lingerie is still expensive even when it is on sale. Those curves though!)

They keep everything on file, including my wishlist with exact sizes. (Just in case my beau needs gift specifics…)

One of the best moments was when my fitter told me she was herself a 20 year cancer survivor. We shared a little about our experiences and she finished by saying, “you know,” not as a question but as a statement. It felt strange to “know” just what she meant, having just met her. It also felt good. It felt reassuring. She’s still here. I will be too.

Thank you, Cinco, for my Petticoat gift certificate! And, thank you Petticoat for making the downs an up, in all the ways.