If nothing else I got dressed today. A little over a week ago I lost my job due to the coronavirus. I’m not writing that sentence for sympathy or awareness of how its affecting everybody, I write it more for posterity sake. Its been a struggle today (and the past few days) but I eventually got myself out of bed and if nothing else I got dressed today.
Real fast and unedited. I’ve been trying lately to figure out “who I am” beyond cancer. Sometimes, I feel like its all that I am, a cancer survivor. I’m currently in a job that I don’t like and makes me feel less than great a majority of the time. I’m not a wife or mother. I don’t have a dog or house so those as a part of my identitiy are out.
Some of who I am consists of a daughter, a sister, and aunt, all pretty great things to be. I’m also a genetic mutant and a rare one at that so that’s cool minus all the tests and the anixenty those tests bring once or twice a year.
I’m also a reader and I like to read it all, from fiction to non-fiction, light and fluffy chick lit to self help books. I relectutanly say that I’m a runner. I mean if you get jealous when you see people running outside in the winter I’d say that makes me a runner. I’m also a dailyish mediatator. I’m not always good about meditating everyday but I try to do it a number of times a week because I find it keeps me present and from going to far down the rabbit hole of dark scary emotions and wondering what if. I’m also a fan of learning foreign languages, for seven years I’ve been perfecting my Spanish with Duolingo while attempting to also learn French and Italian.
Some other things that I hope to be outside of a cancer survivor include a blogger. I don’t necessarily want to be famous, I just want to more frequently but my thoughts out there in hopes that it might help somebody. I want to a be a world traveler because I think that’s been my dream since I was a child, dreaming of one day going to places like Morocco, Cuba, and Japan. Mostly, I just want to be more comfortable being me, I think that is going to be the best way to figure out who I am.
I keep seeing things about the tops of the year and the tops of the decade. I realized the other day that the decade thing is something that really upsets me. This decade has been long and hard and I’m not sad to see it go. Between cancer and it’s endless gifts there has been plenty of other crap in this decade I’m happy to forget.
Instead of dwelling on the negative I’m trying to think of the positive. I made a career transition where I have learned so much more about myself than I thought I could learn in a job. I went all over the state and got to see just how awesome Michigan is and why I don’t ever want to leave again. I made some friends and said good bye to some others.
Truth is though the tough times of the decade really outweigh the good times, so I’m ready to say good bye and embrace this new one. I’m ready to go after my dreams and live the life I’ve imagined.
The one true vacation I took in 2014 and my day at the beach
Almost a year ago I had my DIEP Flap Breast Reconstruction surgery. The main surgery was an experience in itself. The year that’s followed as been its own crazy journey to try and conquer.
The cool thing about surgery is the time travel you experience when you are the patient. My major surgery where part of my abdomen was just to reconstruct breasts was something like six hours, for me it was like the blink of an eye. Being sliced open from hip to hip really hurts. My abdomen hurt, my chest hurt, my head hurt and think all of me hurt. The worst when was I vomited, twice never before have I experienced such pain. Five days later I left the hospital and started the recovery phase of my surgery.
Eight weeks later, I went back to work and quickly scheduled the next phase of my reconstruction. Revisions. Basically, I think of revisions as the nip and tuck portion of the reconstruction. We cleaned up some shapes and scar lines. Recovery was pretty easy, honestly the drugs are really what took their toll. It was hard though to once again get used to a changing shape of my body, suddenly my muffin top from surgery was gone and the shape of things was a little different.
Three months later because both myself and my plastic surgeon weren’t quite pleased with the results I had some fat grafting done (basically its liposuction or moving fat from one place to the other). This is surgery number three in the whole diep flap reconstruction process for me. What I thought was going to be tough with bruising and pain was easy, I barely bruised at all.
I thought maybe I would be done after surgery number three but I still wasn’t quite satisfed. So three months after fat grafting I went back in for another revision surgery. My plastic surgeon is some sort of sorcerss because she really fixed what I wasn’t liking.
So in a year since the major surgery, my diep flap reconstruction has included three more surgeries, its been a journey to adjust to an ever changing body and accept that I continue to put myself through so many surgeries. I wonder sometimes when I’ll reach a point of satisfaction. Thankfully, I don’t ever have to go through the major surgery again. Most important is that overall, I’m so incredibly happy with the results. I know I made the right choice.
Today is National Cancer Survivors Day. I don’t know who made this declaration but I’m ok with it, I like that it’s for all survivors not just one type of cancer. It does make me think about those who have not survived this awful disease because survivor’s guilt is real but I think a little recognition of survivorship isn’t a bad thing.
Because sometimes I think surviving cancer is a bit harder than having cancer. For me surviving cancer has been trying to figure out what the hell my new normal is supposed to be. Surviving cancer and life afterwards is the one part of cancer they don’t seem to have a piece of literature on like they do with everything else that cancer has to offer.
Survivorship has come with periods of depression and agonizing self doubt. I feel as if my life has been on hold since September 15, 2016 and I struggling to find a way to make it move forward because there still seems to some surgery or doctor’s appointment lurking around the corner that makes me think I can move jobs just yet or take a vacation.
But there are positives that come with having survived cancer. I mean the first is obviously that I survived. Others include that I am much braver than I ever thought, I’ve done things like learning to share my story both in person and on this blog for all to possibly read. I’ve met fellow survivors in places where I didn’t know a soul. I’ve learned to make tough decisions and speak up for myself.
At times being a cancer survivor is tough but only because I now know how fast everything in my life can change. But in many ways being a cancer survivor has given me so many more positives to add to my life.
I’m returning to work next Monday after being off for the last eight weeks to recover from my diep flap reconstruction surgery. And for some reason I find myself stressed about going back in a way that I haven’t dealt with before. After my mastectomy, I was more concerned about radiation beginning that I don’t really remember feeling nervous about going back to work. Now I have all sorts of nerves this time.
First, I’m worried about expectations being different now that I’ve had reconstruction. My work has been very understanding about when I have to leave early or come in late, now I’m worried that they are going to think everything is all done and I won’t have appointments anymore. I find that I’m so worried about this, that I feel as if I need to tell my boss that I’m still going to have appointments and possibly follow up surgeries in the reconstruction process.
Second, I’m worried about the expectations I have for myself. I find that I’m worried about not being able to handle my workload and the things that I was doing before surgery. So far I have a hard time standing for an extended period of time which is something that my job requires and I know that my coworkers are eager not do to this part of my job anymore. I’m also just worried about general fatigue being an issue.
Finally, I’m just anxious about all the little things. Will I remember passwords and pin codes? Will they have hired someone new? Well I be able to handle the long commute to and from work?
Bottom line is that I know all of this worry is useless. And that as soon as I settle back into the routine of it all everything will settle and be something that I can do. It might not be like it was before but that’s ok, it’ll be something that works.
Sometimes, I think I should start playing the lottery. It’s really fueled by the feelings that I must have some sort of luck, just not necessarily good luck. I got cancer at 32, not exactly lucky. Another example of my luck, my cancer is hereditary. I saw somewhere that 10% of cancers are genetic, again luck. Finally, my hereditary cancer is from a 1 in a 200,000 genetic mutation called pTen. I mean put these all together and I clearly have some sort of luck, so it could possibly translate into winning the lottery right?
Jokes aside, I feel like my luck as brought me cancer and a rare genetic mutation as way to give purpose to my cancer journey. First, to find some sort of way to give voice to the pTen mutation or Cowden Syndrome as its often referred. Basically, as I understand it, my genes are missing some sort of tumor suppressor. As a result I’m at an increased risk of a number of different conditions including an increased risk of breast cancer, endometrial cancer, thyroid cancer, kidney cancer, colon cancer, and melanoma. As you might imagine, to learn of all these risks after learning of cancer diagnosis is a lot of information to process. What was even more to process was that this was even a possibility, because all my doctors ever talked about was the BRCA mutation, that’s really all I had ever heard talked about when it came to genetics was the BRCA mutation. And as I write this I’m realizing the first way to give purpose is to share my story and advocate for the rare mutations.
The second way I have given my mutation purpose is that I get to tell others what it’s like to go through the screenings for different cancers. After I finished radiation, I started screenings for all the other cancers where I have an increased risk. I could tell my coworker that a colonoscopy isn’t a terrible procedure the hardest part is the preparation the day before. Screening for melanoma, easy peasy you just get down to your undies and the doctor looks over every bit of you, between your toes, through the scalp and it takes no time at all. Mammograms are easy compared to the hell you go through if you don’t monitor things. And that’s usually what I point out to people if I need to, that the screening for the cancer is not that hard at all when compared with fighting cancer. And if they make the screenings a regular thing any potential cancers are probably going to be caught early, which is always better.
Probably the best way to use my luck is to continue to get the screenings for surveillance, to take control of the increased risks. And maybe I’ll buy the occasional lottery ticket.