I kinda left y’all hanging… My last visit to the doctor was so brutal that I could not even write about it. I can recall every detail and every word exchanged. I choose to spare myself and you the nitty gritty of it all. In […]
Tag: self care
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.
This little Canadian company is full of heart! The owners come and go because it’s a worker-owned cooperative, but collectively I have friends who have been happily entangled with them for almost 15 years. My entanglement with them means I have been eating food with them, flopping […]
Hi! I am pretty well healed! I am moving out of full sloth mode and into some more active means of caring for myself. How? Well, I have this list I made while I was in the thick of cancer treatment of things to look forward to. Now I need to make them happen!
My big goal is to get some of this fat off of my body. (Fat produces estrogen, estrogen has the potential to produce cancer in my body.) I need to get strong so I can get back to martial arts.
I also just sent another email to this local organization that does housing advocacy for the elderly, mentally ill and homeless individuals. I submitted my application to volunteer last month but have not heard back. Either they are overwhelmed and really need me, or they don’t need me at all. Either way, I’m gonna try to put my skills to use. If not for them, then for some other organization. As a formerly homeless person, I can not sit back and hope that someone else takes care of the problems in my community. If you don’t know… volunteering is a super awesome selfish act… for many, it elevates depression and makes your heart feel good. I recommend it.
I am really excited about this cookbook. It’s called Greens Glorious Greens!: More than 140 Ways to Prepare All Those Great-Tasting, Super-Healthy, Beautiful Leafy Greens and it’s full of recipes that take what may have been bland leaves and turns them into deliciousness!
At work, we use bonus.ly. Everyone in the office gets points at the beginning of the month. If someone helps you with a project or goes above and beyond we can give each other points as a thank you and recognition. I recently cashed my points in for a Sephora gift card and scored this stunning Bite Beauty Lipstick in a color called beetroot. It’s a deep, dark, sexy lip color. I also got a pallet of Stellar Stardust Lip Powder. The powder is great for layering. It adds some metallic shimmer.
I have always loved Eric Stanton’s illustrations. Here’s a great collection of his pulp book covers. I wrote this article on sex toy materials. I also answered this question about sex toys throughout history and this piece on why people engage in kinky sex. On this podcast, EmmelinePeaches talks about how fitness effects sexual wellness. And for those who like to wear your cock, AFemmeCock has this cool tutorial on how to make a rope strap-on.
My family gave me some beautiful books for the holidays. My Favorite Thing is Monsters is a huge, beautiful graphic novel, page after page of beautifully drawn storytelling.
My husband gave me a copy of The Quotable Anais Nin: 365 Quotations with Citations. He also gave me Raw Erotica: Sex, Lust and Desire in Outsider Art. I do love outsider art, but this volume is more about explicitness than it is erotica. Still a lovely and disturbing book.
Thank you to beyonddelights.com for coming to my online classes for retailers and turning what they learn into thoughtful articles, like this one on sex and unwanted pain. I love seeing good hearted companies bringing good things into the world.
Thanks to Women of Sex Tech for inviting me to be a part of your group. I am honored to be a part of this powerful force!
Thank you (x1000) to Lilly for telling the world I am one of her blogging inspirations. This is a huge compliment.