Well, I realized it’s been a while since my last post. Much has happened, and I’ve been very busy. I think it also goes to show how cancer is beginning to have a smaller influence in my daily life. However, the past few weeks have involved alot of cancer things, so I thought I was share.
February marked three years since my diagnosis, and subsequently March marked three years since my surgery. Three years since I heard the words, “it’s cancer”, and my life changed. Three years since I had not only my first surgery, but my first three surgeries in a short time span. Three years since the third of those surgeries was 7+ hours long and required a 5-day hospital stay in a step-down ICU. And three years since I started to come to grips with the fact that I would lose my hair as a result of chemo.
This time of year also now means that it is time for my annual scans. I had a regular check-up with my new oncologist in February, when she ordered my annual MRI and also requested a mammogram. I scheduled both quickly, wanting to get them done. However, the day before my appointment for both, I got a call saying that the MRI was denied by my new insurance. I kept my mammogram appointment, since they said that might help get the MRI approved. The mammogram went fine, and everything looked normal. However, the tech scared the sh*t out of me when instead of just taking me right inside the door from the waiting room, saying everything is clear, and letting me go, she took me all the way back to speak with the radiologist. All the radiologist wanted to do was (semi)lecture me on how I should not be getting mammograms because I am so young, and I should get an MRI or 3D ultrasound. When I told her that not only was my MRI rejected (to her shock), but the mammogram was ordered by my doctor, so I just requested that she send that as a note to my doctor. I had other things to deal with.
Getting the MRI approved ended up being a much bigger fight. It took almost two months, and numerous calls to my insurance company and my doctor’s benefits office. It got rejected multiple times, including more than one phone call that my doctor personally made to my insurance company. Apparently, I did not meet their criteria, and did not show sufficient medical necessity. I finally got a nurse navigator from my insurance involved, who at first did not prove to be extremely helpful. Once she found out that it had still gotten rejected after my doctor called, she suggested that I try to find a grant from the American Cancer Society, since it probably wouldn’t ever get approved. This was the tipping point for me, and I got mad (regrettably, at her). Even though she was very apologetic and also thought it was ridiculous that it kept getting rejected, she said there were not many other options. However, the next day, I got a call at the end of the day from her saying she had gotten it approved! Apparently, she had gotten pretty much everyone she could find involved, including her superiors, and they somehow approved it!
I quickly made an appointment to get it done, since I had been in a state of quasi-scanxiety for a solid 2 months. Luckily, I was even able to make an appointment for an evening time, so I didn’t have to make up yet another excuse for why I have so many doctors appointments. I went this week, and it went relatively smoothly. Of course when the nurse took me back, she was looking over my forms, and the conversation went as follows:
Nurse: “You said you have an implant? A breast implant?”
Me: “Yup, on the right.”
Nurse: “You mean, just one?”
Me: “Well, I had a mastectomy.”
Nurse: “And you’re 26? Oh my! You’re so young!”
Me: “Yup : )”
Keep your fingers crossed while I wait for the results!
I’ve also been trying to plan for yet another surgery to try to fix my reconstruction. Even though I received a small implant during my last surgery, I am still noticeably uneven. While it was definitely an improvement, I still struggle to find bras and shirts that I can wear that try to disguise the fact that my reconstructed side is still significantly smaller. While it has been good enough, “good enough” is not really the way I want to describe my chest long term. So, I found yet another new doctor, and met with her a few weeks ago. She was super nice, and went over my options. Basically, my best option is to have another surgery to get a larger implant (which is exactly what I was expecting her to say). However, because I had radiation, which leaves skin very tight, she said she will be limited in the size since my skin won’t stretch easily. But, I really think any improvement will help, and I am currently trying to plan when would be the best time. Luckily, this will end up being one of the easiest surgeries I’ve had.
The past few months have also included some bad news for other people in my cancer orbit. A friend has suffered a local recurrence, requiring her to start chemo, and one of the bloggers I follow has suffered a metastatic recurrence. Then, earlier this week, I found out that my favorite blogger, Mandi Hudson of Darn Good Lemonade, passed away. I first came across her blog when I was recovering from my surgery. At the time, she was in remission from an early-stage diagnosis, and continued to publish amazing posts about advocacy and the after-effects of cancer treatment. A few months later, while I was going through radiation, she was officially diagnosed with a wide spread metastatic recurrence. Since then, she struggled to find a treatment that worked and seemed to have the bad luck of getting every odd side effect from her various treatments. But, her positivity never stopped, nor did her will to keep trying new drugs in the hopes that it would keep her here a bit longer. She is proof that you are never too young to be diagnosed, and that catching the cancer early is no guarantee of a “cure”. My thoughts are with her family and her husband, and I hope she is finally in peace and pain-free. If you would like to make a donation, she was a strong supporter of Metavivor, an all volunteer and metastatic cancer patient run organization, that works to increase funding to metastatic breast cancer.
All of these are reminders of just how quickly life can change. Along with my renewed empowerment from my trip with First Descents, I was inspired to sign up for something I NEVER would have considered before my diagnosis. In October, I will be participating in the Young Survival Coalition’s (YSC) Tour de Pink, their annual fundraising event. This means I will be riding 200 miles over 3 days, and raising money to support the programs that YSC offers to young women who are diagnosed with breast cancer. A HUGE help in making this possible (given that I do not currently own a bike) is that I was lucky enough to receive a survivor bike from YSC’s partner, Liv Cycling. For the past few years, Liv Cycling has been kind enough to donate bikes to survivor riders who do not already own bikes, and would not be able to purchase one. I am SO incredibly grateful to be receiving one, and I cannot wait to be able to start training! Once I finalize my team, I will post more about my fundraising efforts!