Where radiation and MAGA hats meet

I completed day 10 of radiation... I wish the doctor had never suggested that I might be a candidate for 15-25 rounds, because now the grand total of 30 seems so very, very far away! 

Everyone has been checking in - asking questions about whether I have any pain or irritation yet. The answer is: not yet!! I've been applying lotion several times a day as a preventative measure. Although I think radiation effects people in different ways, regardless of what one does to mitigate the damage. Some burn, some do not. My mother in law bought me a lotion from France that has excellent reviews... It smells nice and I consider my applications to be little moments of self care. They also can't hurt helping my scars from surgery. 

And whether it helps or not, I've been drinking alkaline water and trying to stay hydrated. 

Now what is radiation like? I didn't know what it entailed before lying down in the machine myself and it may also be very different in regards to what body part is being targeted. 

I have four little freckle tattoos that were placed a few weeks before this started. They measure your body and make these marks easy to find, as I can imagine that would waste so much time finding those spots again and again for daily treatment. The techs always say "19.5" when I lay down on the table and adjust me to line up under a red laser cross hatch. I still don't know when the actual radiation is being released from the machine because there's noise and rotation and little metal pieces opening, closing and moving. 

Imagine a frog on a dissection tray - that's how I feel on the table. I place my arms above my head (that's still a difficult movement for me, but it's improving) and turn my head away from my right side. They tape a sensor to my stomach, used to gauge how deep a breath I've taken every time they speak from the other room, "Take a breath... Hold... Breathe". If I cough or move or expand my lungs while the radiation is flowing, it will trigger an error and turn off. This is reassuring to me that they are trying their best to avoid damage to my lungs. 

The whole process takes about ten minutes. I take many deep breaths and hold them... Feeling like I did when I was little, holding my breath under water at the pool; keeping track of the seconds with my father's Casio glow in the dark digital watch. I hold my breath and count, feeling that low grade burn in my lungs. The machine has three main parts, they swirl around like you are about to launch into space. 

Every day I try to visualize something different and hope that these radioactive waves are finding any sneaky bastard micro metasteses that are hiding. I may or may not imagine that these cancer cells are wearing red MAGA hats and we're eliminating their awfulness one by one. I visualized that they were invited to a drag queen story hour and came to the realization that it's just one human reading to little humans and as they saw the positivity, removed their MAGA hats and threw them in the garbage. Wouldn't that be amazing? Just a little bit of progress? 

Anyways, these vignettes in my brain help me during the process. My wishful energy for the world and my body to heal. What would you visualize? Laying on a kayak in the ocean? Floating in space? Picking cancer cells off with a gun at laser tag? 

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.*

Mr. Finian goes to Pre-K

Anyone that knows Finian knows that he can be... a lot. He has big, big feelings. He lets you know about these big feelings - and it's usually your fault. 

He has been so happy this summer with outdoor time, smashing things with hammers, searching for bugs, swimming in the pool (yelling "1, 2, 3 applesauce and jumping in) and learning how to ride a bike without training wheels. 

Finian is our COVID quarantine child. He was shy of a year when we locked down and I stopped leaving the house for work. It's hard to know whether it's his personality or the circumstances - but it's fair to say he's been the most challenging. Lots of separation anxiety when he was in the nursery at the school where I teach. Lots of stranger danger. Lots of general mayhem!!! He has very little patience for us as parents and like I said, his feelings are big. 

Big feelings can also be positive, though. We always thought he was a touch angry before he could talk - simply because he really wanted to express himself. He cries deeply when his feelings are hurt and often needs to mend with a hug before he can carry on. He wants personal connection for every minute of the day. 

All of these things made us feel really apprehensive about preschool. We imagined tearful tantrums in the parking lot and constant dread about the next school day. Part of it was my own making because I signed him up (excitedly) for the full day program. A lot of our friends said, "oh man, how's he going to do?!?" 

I am happy to report that now, in our third week of school, he's doing wonderfully. His teacher is fantastic and engaging - it takes a special skill of distraction to get those nervous 4 year olds in the door. We have had a few mornings where Finian says, "I'm nervous" or "it's going to be a long day". I've also bribed him with the promises of bubble gum and the Dollar store after school. I'm at that point of parenting where I don't care if that's the right approach - it's what works. 

The best part has been some pretty epic stories about school. Straight up lies. 😂 First, he had a friend named Drip Dropp (which is an awesome hip hop name) - but now if we ask about Drip... he gets mad that we mention it. Because DUH, that wasn't real. He also supposedly has a friend named Jake in his class that can also drive. And someone named Grim... who I think is really Graham. 

My friend Sharon can bear witness to the true Finian when he is let out of school at 2:35. First, he was nice and said hello. Then asked if I had watermelon gum. (I did not.) He then threw his backpack on the ground, said "I'm not leaving. Go get me gum." I was able to drag him to the car where Sharon was waiting. Somehow, magically, in sync with the universe, she had watermelon gum!!! And he was happy again until he got annoyed with us for "making him smile". 

So, we can't really win for long - but we're winning in the school department for now. 

And we're really in his best season. This little guy loves Halloween and we're making the rounds to every retail establishment to press buttons, look at creepy spiders and buy costume accessories. 

The Before, The After and Now

It's been a little over two weeks since my double mastectomy and I'm feeling ok. The day of surgery -  I was nearly hyperventilating as we checked in at our arrival time, I didn't think the "after" would be anything close to ok. I was in full mourning mode and couldn't believe this was real life. Couldn't believe I was willingly walking into a hospital and signing papers that said yes, I'd like my breasts removed. 

I think I said this about chemotherapy before - that the high volume of people being treated is a little shocking. SO so busy. And the same can be said for the surgical wing at Roswell Cancer center. My surgeon, I believe, had at least three big procedures and I was the last of the day. We saw her talking to the family of a woman getting a lumpectomy and then sat with our nerves firing for the next couple of hours. They call you back to get you changed into a gown, talk to a nurse, pee in a cup (to make sure you're not pregnant!) And then lie there, listening to rows of people talking with their families and their doctors. 

It's a bit much to sit there for a few extra hours, waiting with dread. Looking at the familiar shape of my body under clothes... Not really knowing how to officially say goodbye. 

(Because we're nosy and because we had no choice for privacy - we listened intently as the woman one curtain over was talking with her sons about recovery. She wanted to know if she could have her nightly beer and to eat the leftovers of her anchovy pizza. Gregory may or may not have called her Grouchella... Which gave us some levity in such a depressing situation. I do hope that woman was able to get her beer, at least maybe a day later.) 

Unfortunately for them but fortunately for me, I have several friends that have gone through this surgery or one like it. I asked lots of questions about how they prepared mentally and how they said goodbye to a part of themselves. These women had such good advice and are on the horizon, over this terrible hurdle and that gives me hope. I wrote two letters to my breasts - one that I kept and one that I burned in our firepit. I talked to them about the approximate 30 years we've been together and how I'm sorry they had to be sacrificed for the greater good. I said thank you for the years of service they provided as I breastfed 5 children. Thank you for all of those hours spent cradling my children close to me. 

I was tearful as we waited for my turn to be wheeled into the surgical room and be put out of consciousness. My surgeon drew a photo of where my incisions would be and made sure I was content with my decision to remove both breasts. I believe Gregory had the harder day, sitting there, waiting for updates.

My surgery went as well as possible. They removed all breast tissue and only 3 lymph nodes. They do an immediate test for evidence of cancer and there was none in my sentinal nodes - so my surgeon only took ones that looked suspect. My later pathology confirmed that there was no remaining cancer so I can breathe a sigh of relief. 

My surgeon gave these updates to Gregory around 5 pm but I didn't get transferred to a room until about 9 pm. My memory is very hazy, but I do know I was crying A LOT coming out of anesthesia. The nurse was handing me tissue after tissue and every time she said, "We'll get you upstairs and to see your husband"... I would break down again and say "...sob...my husband...sob". I was like a little kid who just wanted to see someone familiar. 

As for recovery: the pain is not as bad as one would expect. The most annoying part of the process is the drains put in to help alleviate pressure. They sting and are very uncomfortable. I'm sure the swelling and risk of seromas were worse before the common practice of putting in drains... But it sure as hell isn't pleasant having open wounds on your chest with drainage tubes that you end up wearing in the world's worst fanny pack. (They are pictured below.) 

About five days after surgery, the bulb at the end of one of my drains was no longer holding suction and I could hear the whistling sound nurses had warned us about. I must have dislodged it during sleep because (1) I was sleeping like C-3PO and (2) I haven't slept successfully on my back in about a million years. We went into the weekend clinic where one of the surgeons was able to ummm, push it back in (🤮) and give me another stitch to help hold it in place. 

The drain on my left side was removed last week and I should get the last one removed at my next appointment on the 11th. I thought it would be horrible to have it removed - but they basically pull it out with your exhale of breath and the site closes up as a scab. 

I've been using these pink microbead pillows to stay comfortable as I can feel my nerve endings working again. Most of my chest area is numb, which sucks for the future, but is helpful in recovering from major trauma. My muscles are tight and while I'll work this out with some physical therapy, it's unknown how this will feel going forward. Most of my right underarm is completely numb and while my skin feels like it's chafing, it's not - I think that's just a side effect of my skin trying to heal itself. 

Here I am, with a new shape to my body, tingling nerves and about a quarter inch of hair on my head - trying to face a new reality. I honestly feel better than I expected. What's done is done - I can't turn the decision over and over in my head because it's, well, over. I did it. I'm still me. 

My chest certainly doesn't look the same, with some long dark scars - but it's still my skin. If you can imagine two deflated balloons... Well, that's me right now. All of this skin has been saved to give me options for reconstruction later. Unfortunately I have to look at a work-in-progress for maybe the next six months - but I trust my medical team when they say this is the best course. I still need radiation which causes big changes to your skin. They can't "fix" me and risk my skin changing or devices like implants or expanders being damaged or rejected by my body. Everything needs to heal before I can move into my next surgery. 

I'm sure I'll write another post about my research into what I think I'll do next. Some surgeries are quicker than others and while I'm still healing, I am not in the best place to make good decisions about the next time I want to be cut open. It's still hard to see the accurate "after", that comes after all of the bruises and scars fade. All I have is now, where every day - I get a little bit more movement, a little more distance from the emotional pain and I can still write this blog and express my feelings.