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 […]
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.
I’m presenting ‘Sex For Survivors: Healing After Trauma’ at Smitten Kitten. There will be limited seats but please know getting there is the hardest part. Once we start, there’s lots of love and ideas for how to squeeze more out of your lovely life. April […]
Howdy! Welcome to my February roundup. You can by the date that I almost missed it this month! Working in the sex toy industry means I get clobbered with work every February by perverted Valentines who need vibrating doo-dads. Bless their hearts.
I am doing well with my plan to eat well. I am working out some. Not doing as well as I would like. Ugh. I’m going to do better.
I am replacing my love of baking with making other things. (I have not been baking or the last year and a half. I miss it!) I finally have everything I need to make my first batch of oatmeal and goat milk soap.
I use to make banana bread for all my friends and family. Now I can force them to be clean and smell good. This makes me so happy!
This month I want to introduce you to AnaOno, a little company that makes beautiful underthings and dresses for breast cancer survivors.
Why? A survivor’s body changes and their relationship with their body changes upon diagnosis.
There are surgeries, scars, procedures, and ports. As a survivor herself, Dana insightfully makes things that make those other things easier to live with. Dana’s creations are beautiful. (And could be worn by anyone, not just survivors– anyone can support her!)
I had the pleasure of facilitating a Sex After Cancer presentation with Dana before I was diagnosed. She was so full of wisdom and warmth. That experience stayed with me and her words from that day helped me as I came to grip with my diagnosis.
One of her mottoes is, “…whatever stage you’re in, AnaOno is with you. We hope you find comfort here.” Her blog is full of insightful articles like Post-Mastectomy Fashion: 5 Things I Wish I Knew Before My Mastectomy and Intimacy After Breast Cancer. I encourage you to visit her site and share her work with any survivors you may know.
I have been working with Kinkly to help this own find her first orgasm and then how to expand her orgasms. It’s so lovely to work with a person who is willing to slow down and take some time to explore their body. Not to mention how amazing it is that she is willing to share her experience with all of us! I also wrote a piece on pain during penetration.
For all my friends who write about sex toys, this piece SugarCunt has a good post on writing sex toy reviews. And for those of you who enjoy reading sexuality-related blogs, Lilly has a great post on easy ways to support your favorite bloggers.
I’m still in a place where I am sort of pummeled from having cancer. I am now cancer free but the frenzy of diagnosis and treatment is over and now I am picking up the emotional pieces. It’s not easy. I do however have a lot to be thankful for. One thing I am thankful for is your willingness to read my blog and experience it all with me. I am less alone because of you.
Now that I have beaten cancer (OMG that feels so good to say!) I will start blogging about how I manage my medical bills, the insurance company, and the VA. (My husband is a disabled combat veteran. I figure there are more vets and those who love them that can benefit from my experience.) Managing medical bills is not exciting, but valuable. Perhaps I can help people this way?
I am accountable to you and you can watch my progress here. You can donate here. Every dollar over what I need for my bills will be given to another yet-to-be-determined person in need of help with medical bills. When we meet that goal, I’ll let y’all suggest who that person may be.
In the meantime, my mind is blown by how generous people have been and by how much you care. I still have a long way to go to get these bills cared for but I feel so empowered by you. THANK YOU!
Even if you can’t give money, to share the campaign also helps so much.