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  • Writer's pictureMia Rose

So.Much.Pink (part 2)

It's weird when you finally open up your eyes to signs from the universe that are guiding you to something. I know many of you might think that's a bunch of bologna, but if I've learned anything in the last two years, it's to go through life with eyes wide open and see what lessons and experiences it is trying to prepare and guide you through. Last week when I started working on my blog entry, I realized I hadn't really divulged much of my radiation story to people and on Thursday I sat at a luncheon where a fellow cancer survivor actually started asking me questions about it. I'm taking that sign as how I should go forth with the direction for this week's blog post so that I can share my insight and what it taught me.

I was originally slated to start radiation in the month of July, following chemotherapy and my double mastectomy/reconstructive surgery. The unexpected ICU stay and sepsis put a little hold on the start date for radiation. For the first time in my cancer treatment ( 7 months in at this point), I decided to take a leave from work. Even through chemo, I worked full time and kept my schedule going as close to normal as possible. Looking back, I'm insanely proud of myself for doing all of that. My near death experience, however, taught me that it was time for me to slow down and just breathe for a moment. I was going to have daily radiation treatments at my cancer center 90 miles away. I just decided to put work on the back burner. I had set it up so that I could get my kids off to school each morning in order to keep a sense of stability for them. I would then go for my morning run to clear my head. That would be followed by me getting dressed and ready (of course with my red lipstick...warrior game ON!) for the daily drive to and from my cancer center. Sometimes I went alone, sometimes I had family or friends go with me. This is where I began my love affair with some amazing podcasts and I had the best time jammin' out to my favorite playlists. Music really fuels and heals my soul. My treatment began in August and ended in late October. I saw the seasons change before my eyes and enjoyed a road trip on some of the most beautiful days of the year. Silver lining. I was surprised by how much went in to the pre-planning stages of radiation. I figured I would just go, get zapped and come home. naive!! I had weeks of scans and the fitting of a specially made bolus for the targeted area that was to be treated, as well as tattooing done to prepare me for this round of treatment. The first tattoos of my life came as five little freckle looking marks on different parts of my body. Most people wouldn't probably recognize them as even tattoos because they are so small, but I felt my rockstar status diminish a little with the fact that THIS was my first tattoo experience...not so hot. Because I was young and a runner and I wanted to continue this type of lifestyle, my radiation oncology doctor went to great lengths to come up with a treatment plan that would protect my heart from damaging effects from radiation. I had to go through testing simulations to see if I could maintain holding my breath at great lengths of time, so that when it was finally time for treatment to begin, I could inflate my lungs enough and hold my breath as to protect my heart during radiation. It was like when you swim under water for a really, really long distance and you come up for air gasping. I had to do this 4-6 times a day during treatment. I passed all of the practice trials of this and it became a joke that this was going to be my party trick at social gatherings..."Look how long I can hold my breath!". Needless to say, I purposely haven't put myself in a situation to hold my breath since.

Treatment finally began and I got into a routine. I was really bonding with my crew who took care of me each day and I started to get used to laying on that cold table, crazy lights and beams all around me with my girls completely exposed, while the machines were zapping and making their weird noises. My team was securely behind the lead door to protect themselves, which was good but it also made it feel like I was this creature being exorcised. Two things still haunt me about incredibly alone and completely terrified I felt in those ten minutes it took to radiate my body and also how completely numb I had become to feeling so out of control of my body and well, life. Life was just happening to me and there wasn't much I could do to stop it or turn things around. I also discovered how normal it became to be half naked in front of people. My team was of course so sensitive and professional, but I felt like everywhere I went, I was exposing my boobs. Thank goodness Dr. M did a good job...haha! Around week three, my doctor was going on a well deserved vacation for two weeks. She too, was a mom of little kids and I was so supportive of her taking this time off that I sent her off with well wishes of so much rest and relaxation. I was going to have one of her partners look in on my case while she was gone, which didn't concern me much because she would be back for the last few weeks of my treatment. Everything was going fine until I was home one evening and something very unexpected happened. I had just finished dinner with my family and I felt like something was suddenly lodged in my throat. Not so bad that I couldn't breathe, but just like it hurt so bad to swallow and something was just wrong. The next day it was still there. Inside I was beginning to panic. The last time something went wrong in my life, I wound up in an ICU bed. Those demons don't go away very easily. This time would my airway be compromised? What was going to happen to me? I was scared. I went to treatment the next day and met up with my team. They told me it is common for the way I was positioned on the table and the areas that I was receiving radiation, to end up with some of the radiation impacting areas of my throat. It was like a really bad sunburn on my esophagus. Awesome. My techs worked diligently to position me better to attempt to limit the exposure my throat had. It helped a little, but over the next days it became even harder to swallow much of anything, including my own saliva. It felt like cancer was laughing at me once again. I met with one of my fill in doctors who gave me the experience of what it's like to have a shitty doctor. I hadn't experienced that yet. She didn't know me...she didn't really know my history...and she didn't really know (nor did I up until this point) how incredibly fragile I still was at this moment. She tried to prescribe me something called "Magic Mouthwash". It was a combination of pain killers, including codeine that would coat my esophagus so that I could potentially swallow with little consequence. I never tried it. I didn't even take more than Tylenol and Ibuprofen when I had my double mastectomy, why would I take something this strong now? My goal everyday was to go home and be the best mom I could to my crazy drugs and side effects please. This may sound weird, but I think not giving in to pain killers gave me some control, some power. The last time I saw this doctor (thank god) she made me feel so small and powerless. Rather than try to understand my objections to the medications, she made me feel stupid for not using it. She wouldn't even listen to the objections I had about it. I was not following her recommendations and she made sure to point out how wrong I was. She also told me I was wearing the wrong bra because it was going to irritate my skin even more once the radiation burns start to surface. I was still trying to figure out my new boobs, let alone what bra to wear. Also, I wanted to feel pretty and feminine because inside I felt like complete shit. I'm sorry if the black lace bra wasn't as good as the ugly white surgical looking bra. I cried the entire 90 minutes home that day.

I was happy once my regular radiation oncologist came back because she got there just in time for my radiation burns. The left side of my torso became pretty raw. It was ugly. It was painful and it forced me to delay my second to last week of treatment. My body needed a break. I got through it and I focused my attention on the completion of this part of my cancer journey. Looking back, I was tired. I was ready to be me. On the upside, I made new friends during this time of my life and I realized the importance of taking time for myself. Being away from work and focusing on my health, my children and just processing what I had been through was so important. I went back to work just one week after completing treatment. In retrospect, I should have taken a little more time, because while the treatment itself was over, my body and mind were playing catchup and what a tricky thing that can be. being dedicated to my mission for this month of taking back my power and being grateful for what cancer has given me, I'm going to share what this experience has positively done for me. I am stunned to say that I'm experiencing tears falling as I write this...these wounds were buried ya'll! I realize that even though time moves on and our lives change and evolve, some experiences were meant to stick around and that's ok! We shouldn't feel shame or embarrassment for not being over something that left a permanent mark on our existence. I didn't think reflecting about this time in my life would stir it all up again. I guess even now, I'm still raw. Being sensitive about other people's experiences and traumas is a gift. I'm able to listen and really understand. There is something beautiful about being a little broken. Those cracks truly do let the light in and make us the kind of vulnerable that opens our hearts and minds to really connecting with others. As bad as my experience was with the doctor from hell, that experience and cancer in general, has given me this sense of strength that I believe in myself and what I"m capable of so much more than I once did! I have a voice and it is loud. I don't back down like I might once have. I see an obstacle and I plow through it. Sure I might have been like this somewhat before, but this go around it's different. I remember talking with my plastic surgeon, Dr. M, about the best type of bra to be wearing now and I told him my story of "Cruella Devill". He looked me dead in the eye and said, "Mia, you just need to do you". Do you. So simple, but so completely true. I have recited those two words COUNTLESS times to myself in the past year. I will never make excuses for doing what I need to do to make myself feel whole, strong, powerful, happy and complete. Whether it's the bra I'm wearing, the trip I'm taking, the clothes I'm buying, the joke I'm laughing at, the song I'm singing, the tears I'm crying or just the fun I'm having...I'm just going to "do me" always and forever. -M

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