About that rope... it snapped.

Two things: I joined an online writing group in hopes of stretching my skills and our recent prompt was "Write as if you are a rope about to break .." 

Monday was my first radiation treatment and I was scheduled to follow up with my oncologist before radiation - to talk about my blood estrogen levels and whether I'd get the shot to suppress my ovaries. 

We checked in at 9:45.... Waiting waiting.... 10, 10:15, 10:30, 10:35.... They've called literally every other patient back and my radiation is supposed to start at 11:15. I'm pretty sure this is how all radiation departments work - but they want you there on time, in the gown, ready to go. Plus my anxiety was THIS BIG, feeling a bit out of my element with yet another unknown. 

I was getting fired up and I gave my dumb little patient stickers back to reception and said I'm not staying - I don't understand why you've let everyone else in ahead of us. I have a radiation appt! 

First she argued that my appt was only at 10:30 (it's 10:40 at this point) and I reminded her that my appt calendar had us check in at 9:45. This is what time we got there after rushing to get our two littlest ones to school. Then she tried to say I still had a little time to get to radiation, as if I want to run to the other side of the hospital, nervous for my first treatment. 

I think my rope just snapped. Why is it acceptable for them to just change appt times, add extra days that we need to take time off of work, and have us sitting around waiting for hours!?!? I don't know how patients do this that are primary wage earners or have small, small children or rely on others for rides. What a f$&king mess.

My "rope" has been hanging on since February. Stretched one way through chemo, stretched through the long days of blood draws (and my needle anxiety with the damn port), then the oncologist, then back upstairs to a chemo chair - knowing that the side effects would hit full force a few days later. My rope stretches with my children and the worry that I'm dropping the ball times five. My rope frayed after what I thought would be a less invasive surgery turned into a mastectomy. My rope was pulled down for another surgery a month later. My rope has gone through spring, summer, fall and into winter with one treatment plan after another. 

 My rope wasn't made of stainless steel - it's made of fibers that need protection from the elements. My rope hangs with the weight of my family, my obligations, my love for this life. My rope frays with these extra hiccups- every extra appointment and every extra frustration. My rope is stretched between the expectations of "enjoy every moment" and "give yourself time to recharge". I can't do both all of the time. 

So as I was low-key raging at a reception desk, where I think they've become accustomed to late appointments and patients held captive by the care they need... I could feel a major strand of my rope break. I don't feel like being a nice patient all of the time, regardless of whether I am directing my anxiety in the right direction or not. 

Almost a week later and I've gotten through the first 5 rounds of radiation. Happy that my side effects didn't start day one, but also feeling like the train is about to hit me. 

I also did make up that appointment with my oncology team - they rescheduled it for me. I went into that office with more needle anxiety (it does not improve with time, honestly seems to get worse) about the potential shot to shut down my ovaries. Because my cancer was fed by hormones, the long term care plan is to get me fully into menopause. Which brings a host of unpleasant long term side effects to my body. Osteoporosis, muscle pain, joint pain, hot flashes, mental fog, etc etc freaking etc. My age is not my friend in this department, because even though chemo pushed me closer to menopause and I did experience a drop in estrogen and hot flashes... There's a very viable chance that my poor ovaries will start doing their job again. For now, my estradiol levels (estrogen in my blood) is *right* on the cusp. So if they stay where they are, I can avoid the monthly shot (into my stomach 🤮) and only take the other two unpleasant medications. 

My rope, it stretches! It strains with every unknown turn and disappointment. But it also relaxes with each horizon I meet and become familiar with. It endures. And it is strengthened by everyone that is helping to weave new strings. 

Pink isn't ALL Bad

You don't know until you know... And now I know what it's like to be on the other side of awareness during October. Or Pinktober. Breast Cancer awareness month. 

Via my multiple Facebook groups for women facing cancer, the resounding sentiment is that this month is difficult. A reminder for those that are survivors or thrivers. Or confusion over what this awareness is supposed to mean or actually accomplish. Some women are just happy that talking about it may lead another to finally get that mammogram. Some are triggered and some wish we had higher expectations for charities or companies just taking advantage of the chance to sell a pink T-shirt. 

I don't like the pink NFL jerseys and I don't like the targeted ads selling me cute catchphrases about being a FREAKING WARRIOR. I want to see more money given to patients and their families, for help with medical bills and the costs of treatment. I want less trite slogans and more attention paid to aftercare. I want the FDA to pay more attention to dangerous food additives and to remove black box labels from estrogen therapy. I want more medical studies for women. We are doing a lot of this treatment wrong for young survivors that are trying to maintain a high quality of life. 

The aim of "awareness" is so vague and unquantifiable, when breast cancer is the second most diagnosed cancer. We're aware. I believe it's a nasty loophole for certain charities to collect a lot of money and not really do much with it. We could raise awareness every second of every day - but if we're still pumping our food and skin products full of parabens (which mimic hormones), we're just talking to talk. 

I am thankful that my ailments come with an automatic club membership. There is comradery, understanding and a plethora of resources as a patient. My disease is "seen" and many, many other people can't say that if they have something rare or untreatable. It's not lost on me that I will most likely live many many more years only because of the many many women before me, and the research knowledge gained by time and modern medicine. 

I had a beautiful bright spot in the month where I'm rolling my eyes at pinkwashed advertisements. My friend, more specifically her daughter, invited me to her volleyball game. Of course I would always want to go but this was the first time she had asked me to come to a game. My brain said... Hey wait a second, it's October, you're in the middle of treatment for breast cancer and usually there's a Pink out or pink jersey game....

 And it was. My dear, sweet Girl Scout that I've known since she was in elementary school gave me flowers and a balloon during her game. Tears were brimming on eyelids all around and I was brought back into the reality of why Pinktober might actually be more therapeutic than I thought. I forget how others are watching my actions, behaviors and words about cancer and the realities of treatment. I forget that sometimes we just need a pathway or ritual to mark a moment in time to acknowledge an ongoing endeavor. 

October is now my birthday month and stark reality month! All together! I am counting my years and think about how I hope to keep celebrating this birthday month for ummm, lots of decades into the future. Reminder that there's thousands of people out there fighting breast cancer and thousands that had it long ago and thousands that need a moment to remember and honor people that were taken by the disease. 

** I know I've blabbed a lot about charities that I dislike, but I'm finding many organizations that provide real solutions to cancer patients and their families. The National Breast Cancer Foundation is a good one! They send this Hope kit if you request one and you can also donate to help. ***

But do I have to miss dance class?

As the months go along, and I continue to take step after step to kill cancer cells and rebuild my body... My biggest question is beginning to revolve around whether I can continue to go to dance class. 

Obviously I still care about staying alive and free from disease. I still research the best diets and supplements. I still Google unpleasant things like "images of radiation sarcoma". I am tired and wonder daily if any symptom I feel is an infection or reaction to my breast expanders. 

But. It's that time of year when I want to be back in tap class!

I've held it together for the most part - facing chemotherapy and surgeries, all with overwhelming support. I was able to tell my coworkers that I had cancer without crying like a baby. I continue to be able to talk about my medical status, without embarrassment. 

The time I did lose my shit? When I had to tell my dance teacher this past March that I wasn't going to be able to dance in the recital. 

I figure I had to break down somewhere, and in the comfort of a dance studio is where I did it. I remember holding it together during class as we walked out our formations and my teacher put her finishing touches on the routine. I'm always amazed by anyone that can choreograph - and our teacher had just coordinated the movements of more than thirty women in our adult tap class. The dance was finalized, I had my spot... And I knew I wasn't going to be able to follow through. 

I asked my teacher after class if we could talk and ... I cried like a baby. I bursted out "I have breast cancer" and of course, the overwhelming feelings were fear and sadness. But I also felt guilty that I was fucking it up! We were arranged in "windows" and lines and a missing person messes it up. After all that work, I have this stupid diagnosis. 

My teacher was understanding. We'd had other people in the class out with knee injuries or pregnancy or whatever else happens to adult women! But if I'm being honest, THIS - my sacred hour on Wednesday night - was what hit me the hardest. 

I love dance. I'm not fantastic - but I love it. I have the fondest memories (that have only gotten more fonder ((is that a word)) as I've gotten older) of my time in dance growing up. That was my team sport. 

And it's my current team sport. I cannot express the good hearts of the women I'm surrounded with at the dance studio. They are supportive and welcoming and hella fun! They've followed up with me as I sat out of the dance recital and brought over meals, fresh fruit, care packages and beautiful plants. They wrote a shout out to me in the recital program that made me ugly cry. They are an incredible group of women. 

Having to step away (even if it was temporary) hurt like hell. 

I went back in September... Only to tap and not lyrical, since my recent surgery restricts my arm movement and strength. And when I found out I needed another surgery after going back to class - my first thought was not "damn it, more anesthesia" but "damn it, I have to miss dance class". 

Expanders, You Say?

!! Warning: this post contains a picture of medical bandages, some of my exposed skin and drains. Don't proceed if you're grossed out by such things. !!

When I told most people that I was headed back into surgery in September, the response was generally, "What? I thought you just had surgery..."

Well, yes, yes I did... but there's more to do. 

Breast cancer is a curious and frustrating thing to treat because most patients end up treating two things at once - of course you are taking the steps to minimize/remove/diminish the cancer but also attempting to rebuild your body. At this point in time, I am NED - No Evidence of Disease. (I'll talk more later about how that's a more appropriate term than "cancer free").* All remaining DCIS cancer and areas around my tumors were removed with my bilateral mastectomy and lymph node removal. 

However, due to the area of the body that was affected... I am working towards reconstruction. Even though I said goodbye to my breasts, I was not ready to go completely flat. I can choose to get implants or implants with fat grafting or something called a DIEP flap. I was making decisions left and right and honestly could only mentally handle preparing for the surgery, not life long implications just yet. 

So now I have these things called expanders. Basically tupperware underneath my skin that is gradually filled with saline to mimic the shape of your old breasts or the future implants. Their main purpose now is to hold space and prevent my skin from shriveling away to nothing during radiation. They aren't very comfortable but are getting better every day. 

And why must I still do radiation if I'm free of disease? Because my cancer was in the lymph nodes... trying to get everywhere else in my body. Radiation, and my future hormone blockers, are all modern day attempts to reduce reoccurence. 

This is a picture of me, wearing the Bair Hugger before surgery. It attaches to a tube which blows warm air under your gown, to keep you nice and toasty as you wait impatiently to go into the surgical suite. 

My biggest annoyance with going into surgery again was (1) the mfing drains and (2) dealing with anethesia again. I was very, very sick the first night coming home. I couldnt eat or drink , but was able to take anti-nausea meds and some CBD oil. I had the kind of sleep that one has during the stomach flu... where you're hovering below consciousness, literally feeling like you're holding back the vomit every second. 

The drains were put in different spots, as I'd really only had about a week drain free from the mastectomy. Luckily, one was placed on my stomach instead of my side - so I was able to sleep more comfortably. Those drains are just gross and inconvenient.

But now they're gone! 

I had the added robotics of these vaccuum sealed bandages. I carried around battery packs attached to bandages that offered constant suction. Really smart for reducing infection risks and avoiding surgical glues & stitches.

My scars look WAY better than one would imagine. I also think there's a huge misconception about what the body looks like after a mastectomy, as if there are huge scabs and incisions. I have relatively small "omega" shaped incisions that have already faded to a very light color. 

This is photographic evidence of how f@cking annoying recovery can be. And I can only imagine if you're squeamish or don't have a partner willing to help look at gaping holes in your skin! 

So, I've gone through another hurdle - while life continues to speed by with kids in school, daily reading, daily pick ups, permission slips, dance class and general need to eat food. Tomorrow is my meeting with the radiation department to figure out the logistics of the last big step of active treatment. 

*I have recently learned that it's not quite appropriate to say "cancer free" when it comes to my type of cancer, and probably others. The risk of reoccurrence is high. And removing my breasts didn't really change long term statistics... one can have breast cancer return without having breasts! Fun, right !?! So that's why I did chemo (to attempt to kill all of those unidentifiable cancer cells floating around). Some doctors don't like to promise their patients that they are officially cancer-free, because damn, you just can't guarantee it.*