I’m doing a little better. I am finding that more peaceful spot inside me where have given in to the fact that life will never be what it was. Things are different now. If I want all the good things life has to offer I must […]
I am a dumb workaholic who tries to do too much every day, hence this note to my future self. I’ll add to this and refer to this to try to keep myself from being an uncontrollable nut after I have my surgery. Wish me luck!
- Rest some more
- Accept help
- Drink water
- Don’t lift anything heavier than ten pounds
- Don’t open heavy doors
- Take pain meds on scheduled (I hate medication.)
- Write it down when you take pain meds so you know what the fuck you are doing
- Don’t shower alone in case you need help getting in or out of the shower
- Shower, wash insition with antimicrobial soap and pat dry insition. No baths. (Damn. I love baths.)
- Call doctor if pain gets much worse, fever over 101 for 24 hours, nausea, difficulty breathing, unusual bleeding, and/or leg pain
- I’m probably feeling better, but don’t rush things
- Life will wait, rest if I am tired
- Accept help
- Don’t lift anything heavier than ten pounds
- If tummy hurts or is swollen, I am overdoing it
- Go slow, watch movies, do art, sit still, nap, read, internet
- Engage with your post-menopause wellness plan
- Walk but not too far from home
- Don’t go in to the office
- I can make a simple dinner or fold laundry, but no vacuuming or gardening
- Keep listening to your body
- Be sure to actively work your post-menopause wellness plan
- Doctor should schedule an appointment around week six
- Ask her about working out and sex
- Ask for copies of pathology and surgical records
My surgeon said no sex for six weeks. I made her qualify that by asking, “No penetrative sex, right?” She said, “Yes, nothing in your vagina.” Ok. I can deal with that. Y’all know sex is an important part of my life. Affection is equally important […]
I am still waiting for my surgery.
In the meantime, I do art. I use these beautiful markers that have tips like paint brushes. I have two crochet projects. I catch up on TV show in chunks. Thankfully my husband has a real knack for knowing when I fell asleep during any given episode of any given show. The next night he will pick it back up where I left off. May sound simple, but you have no idea how awesome that is! I never lose a storyline. It’s good for my brain.
In other news, I have a million tests and appointments this week. My job has been so cool about letting me bank my hours and use my days to get to these appointments cared for. I’ll be getting a CT scan of my pelvis, a mammogram, blood work, urology consultation, medical clearance for surgery, and finally, I developed a swollen lymph node this weekend so get to see if that is something horrible or maybe just an infection from the last surgery. WTF? This little body is in peril.
Last week I got to review my pathology and learned I have a genetic syndrome that makes me 80% more likely to have pelvic cancer. Oddly this made me feel better. I was sort of kicking myself about because I was thinking perhaps I did not care for myself well or some such shit. (I know, it’s all bologna. The conversations we have in our head are not always logical.)
I have my brainiac sister doing research on what I can do to better care for myself after the surgical menopause comes on. It’s a little scary. Nature would have allowed my body to go through menopausal stages when the time was right. I mourn the loss of that natural process. I seek to just do the best I can to take good care of myself. Without the option of hormone replacement therapy, my options will become pure holistic means– like exercise, food, and herbs I think. My sister is the most intelligent researcher in my family so having her help is a blessing.
I am also having all sorts of normal but difficult feelings about sex. I have the most amazing partner and the best sex of my life with him. I know I am lucky to have this kind of relationship. We are brutally honest with each other. He lives with chronic pain so our sex is this amazing combination of rough and compassionate. Every time we have sex I have thoughts on how this may be the last time sex will feel like this. My body is going to change and I fear the unknown. I try to recognize these thoughts, acknowledge them, and then shake them off. It’s all speculation and speculation is a horrible waste of my mind right now.
Due to the never-ending wait, It looks like I will have one last cycle before I lose my uterus. I’m very private. It’s awkward writing about it but I feel like I want to tell you everything. I want future and past survivors to know the truth about uterine cancer.
When I was younger I had a true hate for my cycle. It interrupted “my life.” The pain, the products, the expense. In my early 20s I read a book called Cunt: A Declaration of Independence by Inga Mucio. While I did not chime with everything the author had to say, there were some lovely messages about the female body and its cycles that really resonated with me.
Loving, knowing and respecting our bodies is a powerful and invincible act of rebellion. -Inga Mucio
I grew to appreciate my cycle and listen to my body. I became more kind to myself. (Every woman deserves to have that kind of love and care inside herself and for herself.) I grew to understand that my cycle was not interrupting my life, it was simply part of my life. Making peace with my body made my cycle much easier. I had less pain and brighter days.
I think the day my last cycle arrives I want to celebrate. Maybe I will get a velvet red cake, red balloons, and solicit all red images and gifs from all my friends. It will be my chance to celebrate this little uterus while she’s still with me.
(Photo of my inner left arm, with the words “Force of Nature” written in script.)
Last week I publicly shared my cancer diagnosis. That was scary as fuck. Since then my husband and I went to a follow-up appointment with my first surgeon. He set us up with the next surgeon. She is supposed to be good, uses robotics and is as […]
I can’t tell you much about Jo. She was a Holocaust survivor, having been freed from Auschwitz concentration camp in her early teens. She couch-surfed through Europe, hopped a boat to America, and eventually landed with her extended family in New Jersey. When I met her she was in her 80s. She was retired and had developed a passion for photography. She wanted to take my picture. I let her.
We developed a friendship. We would talk about art, drink tea, and find good food together. Every once in a while I would see a little bit of her pain as a survivor. Having come from a rough place myself, I appreciated it when she would be vulnerable enough to allow me to see it.
One day I arrived at her house to find she was wearing her camera strap with her wrist tucked in, like a sling. I asked her why.
She explained that she was suffering from a shoulder injury.
I asked her if she had seen a doctor.
She explained that they wanted to do surgery but she was not going to do it. She did not want to spend the estimated 5 days in the hospital.
I totally understood. When you have experienced institutional trauma as she had, being confined and not having control of your moments and days can be unbearable. It’s panic-inducing.
By this point in my life, I had been trained as a patient advocate. I had been spending days and nights in the emergency room with domestic violence and sexual assault survivors. It was my job to sit with a patient, help them understand their medical and legal rights. It was my job to give back some of the power that had stripped away from them by trauma.
In an effort to encourage Jo to care for herself I offered to go with her to the hospital. I offered to sit with her, by her bed, 24 hours a day, for all the days she may need to stay. She declined my offer.
I respected that her body belonged to her. I reinforced that fact that if she ever changed her mind, I would be there. I was ready to care for her.
When I left Jo’s home that day I had this overwhelming sense that if I could not care for this survivor, then perhaps I should learn from her. I made a promise to myself that if ever I was in need of medical care I would not allow my past trauma and pain inhibit me from seeking that care and submitting to the treatment that would give me the highest quality of life. As a form of revenge against the world and all the pain it has caused Jo, I would work to only take better care of my body.
Today I give thanks to Jo. She taught me how to be stronger and how to take better care of myself. When my body began to bleed and bruise it was my memories of Jo that made it possible for me to push past the tears and fear and achieve my cancer diagnosis. I will draw on this strength as I move through treatment.
(Photo by Jo.)