I’m still here. There’s a lot to be said for that. As you may be able to see (especially those who follow me on twitter) I am spending my time just keeping up with life and processing this whole surviving thing. I am hitting the six-month […]
Tag: genetic testing
Yup… I stepped off the ledge and talk about all sorts of things, including dildos, strap-on harnesses, surviving cancer, and caring for assault survivors. We packed a lot into the conversation! It’s Just Ducky! In town from New York, it’s the triumphant return of renowned sex […]
Last month I struggled with a sense of aimlessness. I am now about five months into remission and that feeling still exists to some extent but has been overtaken by a sense of doom. Thankfully I am not moving through my days feeling depressed. I get to work and get things done in a day. This sense of doom is more like background noise. A feeling like I can’t trust my body because it could be or will be at some point harboring more cancer.
There are two contributing factors to these feelings. The first is that my oncologist urged me to see a genetic counselor. I went. The counselor mapped my “pedigree.” Which means she literally had a sheet a paper with a circle in the center. That circle represented me. She then asked me questions and formed branches off me to represent my family and their histories of cancer.
My tumor has already tested positive for MSH6, a category of hereditary Lynch Syndrome cancers. We know I got this from someone up the line. Couple that with the very limited information I was able to share about my family and it was obvious that cancer runs in my family and genetic tests were warranted. (All that has to be establiished and signed off by a docor before insurance will cover the tests.)
I gave them some blood and we went ahead with the full bracket genetic tests, testing for 68 genetic markers. The results will help my doctor better assess what proactive steps we can take to keep cancer from stealing my life away early.
The second contributor to my sense of doom is that I also joined a couple closed facebook groups for people with Lynch Syndrome. The conversations in these groups are very informative but also kind of frightening. There’s some scientific information on our kinds of cancers but in these groups, we share personal experiences. I may have to just stop reading the posts. The stories have been at times reassuring, make me feel less alone but they are also scary.
It’s heart-wrenching to learn how aggressively they push people who test positive to have preventative surgeries, rather than allowing cancer to ever form. For example, if they knew I was positive for MSH6 when I was 18 years old, doctors would tell me to have the children I want to have as early as possible and then remove my uterus ASAP. These are the conversations young people with MSH6 have with their doctors.
The stories shared also illustrate that it seems a person with Lynch Syndrome gets cancer, gets a break, then fights again. We may get a 6 month to 16-year break in between fights. But no one can speculate how long their break will be. If you are proactively testing your body, many people live into their 70s or 80s. But not without a fair amount of pain and ruin in your life.
The testing is miserable and happen in annual rotations. If they catch something then it’s surgery, perhaps chemo, perhaps radiation, all the ramifications of the treatments… and then of course if you are really unlucky, it could mean death. The cancers focus on the reproductive and pooper regions. (Don’t you love my science talk!?!) But they can pop up almost anywhere, like your skin, stomach, brain or pancreas.
The shit’s serious enough where anyone who does genetic testing and comes up positive is no longer eligible for life insurance and your eligibility for health insurance becomes limited. So now I have to think about the fact that I will never be able to get life insurance and the impact that may have on my family.
Couple that with how the medical bills continue to come in, the unraveling of the financial progress we had made before I was diagnosed, and how this has all put us in a hand-to-mouth financial state– you can see how one might feel a sense of doom?
We are not hungry, but we are struggling to live up to all our obligations. Thank you to those of you who have donated to the YouCaring campaign. It really has helped us. We’d be royally fucked with you.
But like I said I am keeping my chin up. I got good fight in me. I got my husband, family and friends to back me up in this fight.
I have been working on crossing things off and adding things to my list of things to look forward to. I have started that new tattoo!
There are people all over the world who carry the mermaid inside them, that otherworldly beauty and longing and desire that made her reach for heaven when she lived in the darkness of the sea. -Carolyn Turgeon
My brother’s wedding happens in a couple weeks! I am his best man. The next Deadpool movie will be released in May! Soon I will be buying seeds and begin my garden for the year. And we have added a staycation in July to our plans. We live just five miles from the beach, so we are going to pack a cooler and lay on the beach for a week.
There are good things are happening along with having to learn how to be a survivor. I’m trying to stay focused on the positive while facing all the realities. I can do this.
I have added some resources on genetic counseling, Lynch Syndrome, and the facebook groups I found to the resources page.
Uterine cancer is also called endometrial or womb cancer. People don’t talk about it enough… perhaps because it mostly happens to older women? Perhaps because women are not sharing their grief with this diagnosis? But uterine cancer can also happen to younger, body positive, fearless women like me. […]
Still managing to keep my head in a good place. I have these passing panicked thoughts about surgery and incisions and losing part of my body to cancer. I am getting pretty good at setting them aside. The mind is a funny thing, you can play honest […]