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 […]
Surgery happens this Friday. Now there is a low hum of nervousness that constantly resonates out of my chest. It started yesterday and is so real that I can damn near touch it and see it. I wish I could make it stop. The thing that I have been asking for and not wanting is almost here. It’s inevitable.
It does not help that I can’t drink tea until after surgery. I have no problem with the other restrictions in part because my foods and drinks are already so fucking healthy. I don’t do any medications, no alcohol, coffee, soda… I do however like my ritual of tea in the morning. Grrrr…. I did find some almond milk eggnog, so I have been heating that up in the morning. Seems to me tea would be a million times better for me, but I give the doctors what the doctors want.
It’s been an interesting experiment in boundaries to put this whole thing out on the internet and write about my feelings and experiences. It has allowed those who are close to me to understand what I am feeling. (I don’t verbalize this stuff much.) It has allowed those who don’t know but care about me to express their love and cheer me on. It has brought a number of strong survivors into my life and threads. And it has brought a few thoughtless fools. I don’t think they mean any harm, but the things people say sometimes is so inappropriate.
Generally, the only things that irritate me are people giving me advice on what I should have done to prevent cancer. IT’S FUCKING GENETIC. It’s not about my behavior and it’s not my fault. So those people can go fuck themselves.
And then people make flip comments about my reproductive organs being removed. Things like how my uterus “It was a baby maker and now it’s a playpen.” WTF? Gross.
Or how I don’t really need these organs anyway. Umm… A women needs her ovaries and cervix at the very minimum. Ovaries produce feel-good hormones. A cervix is also a sexual nerve center that plays an important part in pleasure for many people. We can live without them, but we’d have a better life with them. Let’s remove any part of you and tell you “it’s ok… you can live without it.”
Let’s not forget that fact that even if I do not have children that does not mean I do not want children. I have always looked at myself as a future mother. When I was young I purposely sought to not have children because I was in poverty and did not have a partner I trusted enough to reproduce with. I could just barely care for myself and refused to have a child I could not care for.
Of course, poor people are allowed to have children– they just can’t always give them the best lives. Gandhi (he was a disgusting creature in the way he treated women and children, but he said and did some good things in his life) said if poverty was an excuse to not have children, there would be no children in India. I say never disparage a poor person who has children and is doing their damn’dest to give them a good life. I just chose to wait.
Anyway, once I was married I experienced more miscarriages than I care to share. This little body just would not carry a baby. I could have gone the medical route and tried to force my body to carry a child. I made the choice to respect my body and allow it to be just as it is.
It also helps that I know I can foster and/or adopt children. I grew up in foster homes. I know the reality of that world. There are good children out there who need homes. Some of these kids may be mine? I don’t know yet. At some point, my husband and I will buy a house and then we can see how we feel about that.
Reproduction may be limited to some of us but children are always available. I wish more people would get their fucking instincts and egos out of the way and consider fostering kids. Giving foster children and teens homes, even if they can’t keep them forever.
Anyway, opening myself up to the world has also opened up doors for strangers to say things that don’t sit well. Here’s a good guide to what to say to someone who is diagnosed with cancer.
And please enjoy this video of B movie monsters destroying shit. I understand them.
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. […]
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 […]
Yesterday I completed all the pre-surgical appointments. As soon as we got in the car I called the desk where they are to schedule my surgery. Got the voice mail. Again. Fuck.
They may be hating me over there, but I am over it. I left another message. This time I told them “I have achieved EVERY obsticle you have had to scheduling this surgery. The surgical urologist is ready to coordinate the times with my surgeon.” It’s so frustrating because she told me she was speaking with the surgeons to get it scheduled a week ago.
I hung up and felt instant frustration because I have done everything I could do. I have nothing left to do. I also had this feeling that I will spend the rest of my life waiting. Now I am waiting for surgery. I’m waiting for more pathology reports and cancer staging that will come immediately after surgery. After that, I will be waiting to heal. I am waiting to learn how my body will change. Will I need radiation? Chemo? I don’t know. I am waiting to find out. Eventually, I will see an oncologist every 3 months to monitor my body. If I am lucky I’ll spend the rest of my life seeking and waiting for NED (no evidence of disease) reports.
I have resigned to the fact that I can’t sit here waiting. I have to make the most of every day. I have to change my mindset. I am not sure what that means yet, but I’ll get there.
Tuesday was my hardest day since I was diagnosed. It started with a mammogram. I walked into the office and they told me this was a woman’s clinic and my husband could not be there. Yet there was a dude standing at the counter. I pointed to him and said, “What’s he doing here then?” They tried to tell me he was there for some other procedure. Needless to say– I kept my husband by my side.
Why would you tell any patient that the person who cares for them enough to come to an appointment with them was not allowed to be with them in the waiting room? Men get breast cancer, men get mammograms, men love women who need mammograms, and you can’t look at anyone and assume their gender. Their practice is antiquated. (My breasts scans looked great tho!)
Next was my pelvic CT scan with contrast. Contrast is so gross. I had drink fluid. More fluid was put in through an IV. The IV fluid is hardcore. When they initiate it your body turns hot, you feel like you are gonna pee (so weird!), and you get this metallic taste in your mouth. I had this done endlessly when I was a child.
Perhaps it’s more uncomfortable than painful for most people? For me, it’s very triggering. It’s as if I can taste a nightmare that I actually lived if that makes any sense? I taste the needles they put in all my veins, one by one until they all collapsed. I can feel the IVs they put in the tops of my feet after the exhausted the veins in my arms. I remember the bruises and residual pain from the needles. I remember the Pakistani doctor who grabbed my arm tightly, pinned it down and threatened to hit me because I was a noncompliant seven-year-old child. I remember the hospital elevators, halls, rooms, the spots on the ceiling tiles, the neon light bulbs, the patterns on the hospital gowns… all of it. All those memories exist in the taste of contrast fluid.
Through this, the medical pros that were administering the CT scan could see I was distressed. I am alone in the room, but they can watch me on the little close-up camera above the CT table.
I lay there. I am silent. The tears run down my cheeks, through my purple hair at my temples, and onto the pillow under my head. When I got up there were purple teardrops on the pillow.
“Are you doing ok?” they ask.
I can’t reconcile why I still cry over long gone pain and why these tears feel so humiliating. Is it the heat of the contrast fluid? That someone is doing things to my body against my will? Is it my lack of self-control? Is it that my body had betrayed me again with illness? I don’t know.
I have started to compile resources for myself through time, but I can’t help but notice how none of the medical professionals I have seen has had a single mental wellness conversation with me or a single resource to share. You would think any doctor office would have a printout, a pamphlet, or a phone number one can call for help through this process. Instead, they all have pharmaceutical pamphlets on injectable weight loss drugs and fertility. It’s fucking frightening.
I ended the day with more blood work and a medical clearance where they found I have been peeing blood. Who knew?
Not me. I think with all the discomfort and pain, I can’t even recognize where it’s coming from. So now I am on antibiotics, I am pretty sure I’ll get some of my energy back after I complete this round.
So what does today bring? My last cycle has arrived. I thought I might throw a party and celebrate this day, the last hurrah of my little uterus, but mostly I just feel unwell. 🙁 Grrrrrr…
I do have an appointment with a naturopathic doctor today to seek answers on how I can heal and care for myself after surgery. My sister delivered her well-researched list on actions I might take to deal with abrupt surgical menopause. I think I’ll work that list over this evening.
To my family and friends… you have no idea how much your letters, packages, tweets, and replys mean to me these days. I know I am not the best communicator/responder, but I am so thankful to not be alone through this. I love you.
(Photo: Me and my husband.)
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 […]