My Creaks and Cracks and Letrozole Dreams

I’ve been on the aromatase inhibitor Letrozole (generic for Femara) for a month now.  My breast cancer is estrogen receptor positive which means it requires estrogen to grow.  Aromatase is the enzyme that synthesizes estrogen.   Before Letrozole I took Tamoxifen which attaches to the hormone receptor in the cancer cell, blocking estrogen from attaching to the receptor.  According to my oncologist, Tamoxifen is not as effective as aromatase inhibitors once a patient is post-menopausal and it’s really not as effective with my type of breast cancer, Invasive Lobular Carcinoma.

Both are powerful medications that come with a multitude of side effects.  So far I feel like I am experiencing the side effects of Letrozole way more than I did with Tamoxifen.  I’m more fatigued, I have increased joint pain and every time I move any part of my body it creaks and cracks.  Loudly.  I experienced mild joint pain with Tamoxifen but this is so much worse. I’m trying to be more active.  I practiced softball again with Lili for the past three days and I am still sore.  I’d like to know why it takes forever to get in shape but conversely just a blink of an eye to get out.  One thing that makes me twitchy is I am STILL a good player albeit much slower but when I tell people I’ve been coaching Lili for her upcoming tryouts they kind of give me the side eyes.  They assume she gets her athletic ability from her dad (understandable as he is actually super crazy athletic but has never played any American sport ever).  Yes I am a bit fluffy and may look as though the only sport I’m good at is couch potatoing, and yes I had cancer and cancer treatment but you know what? I played soccer, tennis, softball, baseball and ran track.  I’ve still got it dammit!

So speaking of Letrizole and its side effects, there is one new side effect I’ve been having and that is crazy-ass dreams.  I think the oddest one I’ve had was a couple of weeks ago.  I was with a group of people at some kind of sports bar and baseball Hall of Famer Reggie Jackson was there and I was taking a selfie with him.  I’m sure the dream was prompted by my recent softball outing with Lili but why him?  Maybe he was in a commercial or something, I have no idea.  I used to follow baseball as a kid but that was like more than 35 years ago.  I’ve had other weird dreams too where I’m working in retail which I also haven’t done since my twenties.  In those dreams I’m all stressed out because I’m either being called in to work on my day off or I’m at work and can’t ever figure out how to operate the cash register.  Meanwhile the line is getting longer and longer with pissed off customers.  Sometimes I have dreams that are just a jumble of different people who I may or may not know, in various realistic and unrealistic situations. I wake up kind of foggy like “what?  Huh?  What just happened?  Is it a work day?”  If you’ve ever watched Mr. Robot or Legion it’s totally like that.  So stay tuned, hopefully I will find a remedy for my new creaky cracky joints and Lili will have made the school’s softball team.

ADDENDUM: In the interest of full disclosure, another side effect of Letrozole is dryness EVERYWHERE. For two weeks I’ve been pooping little rabbit pellets. True story.

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I Cried, But Then I Laughed

This week I’m sharing my guest piece for Breast Cancer Sisters’ Blog which is an awesome site created by fellow blogger and breast cancer warrior Taylor Eames.

Breast Cancer Sisters

By guest blogger Kelly Nemecek

In the weeks after my diagnosis of Stage 3 breast cancer, I found myself crying, out of fear and hopelessness, devastated at the thought that my 12 year old daughter might lose her mommy.  But as I got closer to my surgery date, a strange thing happened.  The hopelessness turned into determination and a sense of purpose, like a soldier preparing for battle.

I knew that I would be relying heavily on my faith in God, but what I didn’t know at the time was that my sense of humor would also be a huge factor in how I would cope with this new threat on my life.  I have always been very self-deprecating, and my husband and daughter can pretty much make any situation hilarious.  Case in point- after my surgery as I was slowly regaining consciousness and trying to get my bearings in…

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My Latest Tumble and I Explain Breast Cancer Alphabet Soup

Well I’m still in limbo about whether The Boob Whisperer will take my new insurance or not.  Apparently his office has applied for a contract with my new health plan but it hasn’t happened yet.  Meanwhile I’m still having some shoulder and muscle pain on my left side.  It’s exhausting especially if you’re out of shape which I totally am.  I was practicing softball with Lili this morning for a couple hours and I’m completely whacked.  I barely even ran and the one time I did I tripped and went down like a lead balloon.

Lili thought it would be fun to point out that’s the third time she’s seen me trip and fall in the last year.  A couple weeks ago we were walking to the car in a parking lot and I tripped on a curb and biffed it.  Right in front of this guy sitting in his car.  He was very nice and ran over to see if I needed help.  Once we got back in the car I laughed and said “well that sucked.”  Lili said that it was the longest slow motion fall down she’d ever seen.  Most of you know I’m blind in my left eye from meningitis in 2004 so what looks like clumsiness is actually no depth perception and a huge “blind” spot.  You can read more about my blind adventures here.

Moving right along, I wanted to have a little teaching moment.  Many women (including me before my diagnosis) think breast cancer is a lump found on your breast.  Sometimes that is the case but many times it’s not.  The most common type of invasive breast cancer is ductal, and about 70-80% of all invasive breast cancers are ductal or IDC-invasive ductal carcinoma.  My cancer was lobular which is the second most common invasive breast cancer although it only represents about 10% of cases.  Invasive means the cancer has “invaded” or spread to the surrounding breast tissues.  Lobular means the cancer began in the lobules where the milk is produced.  Milk travels from the lobules into the ducts which then carry it to the nipple.  The thing about lobular breast cancer is that it is super sneaky and is often not detected on regular mammography especially if you have dense breasts. I probably should have been getting 3D mammograms but even then it’s not always detected.  It frequently presents as a thickening of tissue as opposed to a spherical shaped “lump.”  I always thought it would feel like a marble.  You need to be aware of ANY changes in your breasts, armpits or nipples.  IDC or invasive ductal carcinoma is when cancer cells begin forming in the milk ducts and have spread beyond the ducts into other parts of the breast tissue.  There are non-invasive forms of both lobular and ductal carcinomas known as LCIS-lobular carcinoma in situ and DCIS-ductal carcinoma in situ, where the cancer cells are contained in the lobules or ducts.  There are also some less common breast cancers like inflammatory.  I know it’s a lot of letters, like breast cancer alphabet soup but since 1 in 8 women are diagnosed with invasive breast cancer in their lifetime it’s important to educate ourselves.

There are numerous factors oncologists use to determine what stage a patient’s breast cancer might be.  Staging goes from 0 which are the non-invasive or in-situ cancers to stage 4 or metastasis (mets) where the cancer cells have traveled to distant organs like bones, lungs, liver, brain, etc.  I was Stage 3A, 8.5 cm tumor, 2 out of 14 lymph nodes positive.  From breastcancer.org:

Stage 3A describes invasive breast cancer in which either:

  • no tumor is found in the breast or the tumor may be any size; cancer is found in 4 to 9 axillary lymph nodes or in the lymph nodes near the breastbone (found during imaging tests or a physical exam) OR
  • the tumor is larger than 5 centimeters; small groups of breast cancer cells (larger than 0.2 millimeter but not larger than 2 millimeters) are found in the lymph nodes OR
  • the tumor is larger than 5 centimeters; cancer has spread to 1 to 3 axillary lymph nodes or to the lymph nodes near the breastbone (found during a sentinel lymph node biopsy)

Once there is a Stage 4 diagnosis it is usually treated like a chronic disease.  I’ve probably said this before but it bears repeating – there is no 100% cure for invasive breast cancer.  If you’ve had a bilateral mastectomy followed by chemo, radiation and hormone therapy if warranted like me, the best you can hope for is no evidence of disease (NED).  Even if the surgeon believes all cancerous tissue was removed there is the possibility that one or more of those cells sneaked by.  There is just no way to know definitively.  This is why my oncologist and most others say NED and do not say “cancer free.”  I think it is an important distinction because one sounds cautiously optimistic while the other sounds a bit like a false sense of security.  I’m sure there are those that will disagree with me because maybe hearing the words “cancer free” makes it easier to live with the uncertainty, but I am a realist and the reality is every day is gifted but not guaranteed.

I Was Always Strong and Beautiful, Who Knew? I Didn’t.

I was supposed to see The Boob Whisperer this coming Monday. He was going to schedule the minor revision to correct the little divet and extra skin on my right foob. I was also going to ask him about the 3D nipple tattooing process. As it turns out, he is not contracted with my new insurance. His wonderful patient liaison called me with the news. I mentioned that he’s listed in my network but she said they are still trying to get contracted. I also told her that it’s the only insurance provider of individual plans and I have no other options. She said they are hoping the contract will go through soon. So, until then I’m in limbo. Otherwise they’re still very numb and now my left shoulder hurts when I lift my arm. I probably need physical therapy. Maybe my yoga teaching husband can show me some stretches or something. I am pretty tired of doctors and such. After The Big Chop I saw my breast surgeon frequently, followed by the oncologist every other week, chemotherapy every three weeks, then radiation every weekday for six weeks. A few months later I had my reconstruction surgery and saw The Boob Whisperer pretty much once a week for 8 months. I was in a doctor-visiting bubble.

I remember The Boob Whisperer telling me about a clinical trial underway for larger than 800 cc (the largest legally available in the U.S.) implants for reconstruction patients, going up to 1,400 I believe. 800 may sound like a lot when uttered in breast augmentation circles, but with reconstruction it’s not that large unless you’re like 5 feet tall. For a taller woman with a larger frame, 800 might mean a B cup or less. For me it’s about a full C. I was chatting with a woman on Facebook recently who is part of this Athena trial at the Mayo Clinic and she has 1240 cc. These extra large silicone implants are expected to be available to breast reconstruction patients (who fit the criteria) some time in 2018. I would have liked to have gone larger, but hey these are still fabulous and very perky. Right now I need to work on getting the rest of my body in shape to match my new foobs. It’s funny how one’s perspective evolves depending on current circumstances. After The Big Chop I didn’t give two craps about having boobs. Good riddance. I felt that way all through chemotherapy and radiation. I did notice though that it seemed like boobs were everywhere I looked, in my face, mocking me. A couple months after radiation I admit I was longing for boobs again, but I didn’t want to wear a bra with prosthetics and mostly it’s because I hate wearing a bra at all now after going without for almost two years. Bras are just not comfortable and the ones that are comfy don’t do anything a cami or going commando can’t do. Anyhow, once my radiated tissue had healed I consulted with The Boob Whisperer about the plan for reconstruction and he explained how with the tissue expansion I could decide how big I wanted to go. Apparently he would just fill me up until I was satisfied-ahem-was a satisfactory size. At first I felt like, oh a C will be fine, it’s what I had before The Big Chop. But then I got kind of greedy, picturing a nice perky porn star rack. This of course prickles my feminist sensibilities, and of course I wouldn’t be happy with boobs so enormous they could double as floatations when the plane I’m on crashes into the ocean. I wonder if the idea of getting large breasts was kind of a fuck you to cancer, like “you may have taken them but they’re back baby-bigger and better than ever so suck it!”

I realize I need to love myself the way I am-no matter my breast size and give myself time to get to know this new version of me and be comfortable in my new skin. I also found that as much as my reconstructed breasts have done for my confidence and self image, I was actually a strong and beautiful person all along, even more so when I was bald and without breasts.  This is because during that time in my life I really learned to appreciate my inner qualities and let them carry me. It may sound kind of braggy but it’s true, and I recommend everyone look for this within themselves.