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 […]
Tag: medical care
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 […]
I am a very stoic individual. I don’t like to express my pain or vulnerabilities publically.
I was at work when the doctor called. He did not ask me where I was or prepare me for the news. He just said hello, told me who he was and said, “I have the results from your biopsy. You have cancer”
I was sideswiped. I had been so happy to have the biopsy surgery done that I had almost forgotten that there were results to come.
I ducked into a nearby office and exploded in tears. I was full of fear of the unknown. What is cancer? Is it death? Destruction for my family? Is it the loss of my hair? Is it painful? I had no answers.
I needed to hide my face and tears. I could not face my coworkers. I was trapped in this office. I contemplated climbing out the window. Nope. I needed my coat and bag. I sat there crying for a long time. I called my husband. I called my sister. I slowly pulled myself together and slipped out the front door. I emailed my boss later that day. They love me. My health was their only concern. I was ok.
But tears kept quietly flowing. Every day I would get up early, before my husband was awake, and write here with you. I had to cry but did not want to subject him to it. My friends got used to the idea that I would not pick up the phone. I could not have the conversations. But I used this blog to express myself and wring my eyes out for the day before I would have to go to work and be strong. I’d put all my feelings into these post and gave them to you.
I can see the analytics. I knew that if I expressed them here you would show up and process them with me. You’d collectively write comments and send me little notes. I got emails and messages from people who have survived the process, from people in the middle of the chaos of cancer, and from people who work in medicine and cared enough to experience this with me. My words and tears have been serving more than just myself and that too has kept me writing.
One by one packages started to arrive on my doorstep. Fuzzy blankets, bath bombs, books, and chocolates. You stepped into the unknown with me, to live in this place where we sat together in fear of the unknown. You sent me things that soothe my heart and remind me I am not alone. I wrap myself in these things and they emanate you. I can feel you. I kept writing to you so I could hide my tears in public.
I had some horrible days trying to schedule endless medical appointments. The person on the other end of the phone might ask me why the procedure was being scheduled and I would be forced to say out loud, “I have uterine cancer.” And then I would fall apart in tears. It was hard to say those words out loud to a stranger. I’d have to apologize and fight through the tears to finish the call.
I got in contact with a short-term free counseling service. They only had counseling hours during my workday. I said to the woman, “I have to work, I can’t make any of the times you have available.” She asked if I could speak with a counselor during my lunch break. I said, “I can’t spend that time that I should be caring for myself with lunch on the phone– crying. I can’t then go back to work and behave as if all is well.” Counseling was not an option for me.
Instead, I came here and I have processed my tears with you. You allowed me to express them at 4am or 5am. I was able to make it to work. To make money for my family. To hold it together most of the time. To use my experience and my pain to write and help others. I was able to give my tears to you. I opened up. I said yes to your help. These are no small things for me.
Try as I might, I still could not control the tears.
There would be little tears that would spill out during a tough medical procedure. The medical professional might exclaim, “Why are you crying? You’re covered in tattoos! This doesn’t even hurt!” Or a more empathetic professional would say, “I’m sorry. We’ll get this over with as quickly as possible.”
Afterwards, I might get very quiet in the car as tears slipped down my cheeks. If I could pull my heart out of my throat I would tell my husband, “I don’t want to have cancer.” My husband is a silent person. The bullet he took through his neck, that exited out his mouth only encourages his silence. I have learned to listen to what he does not say. A gesture, a lack of gestures, the tension in his jaw or hands, the flush of his cheeks. He did not want me to have cancer either.
I had one uncontrollable outburst two nights before my surgery. I tried to hide in the bathroom but my husband pulled me out and I sat in his arms and bawled. As hard as I tried I could not stop the tears. The only words I had to explain them were, “I am scared.”
That was the last time I cried. Until yesterday.
Last night I was feeling physically weak. I had just finished my first week being back at work. It was not easy, but I needed to get back to making a living. We beat cancer (YES! YES! YES!) but every day the mailbox is full of bills. Big, ugly fuck-me bills. Bills that illustrate how hard it is to be in need of medical care in America.
And then this happened. Thank you Lilly and to each person who has donated or shared the campaign. Your love and support feels like you are pulling wreckage off of me, brick by brick and relieving the pain and stress. And this morning I sit at my computer, blogging through tears with you again. But these tears? They are not based in fear or pain, they are tears full of joyful disbelief. I feel so loved. Thank you so much.
This is a timeline of my healing process. I’m creating it to remind myself how far I have come and to help other people who experience a robotic, radical hysterectomy to know what they might expect. Doctor’s say it should be six weeks until I am fully […]
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. […]
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 […]
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 accept the cost. The cost now is that I invite healing professionals into my life. I allow them to touch me. I trust my body, I trust my mind, and I trust them.
Trusting others and allowing them to touch me is no small thing. I have something of a reactive attachment disorder that stems from the neglect and abuse I endured as a child. I was physically abused, I suffered immense medical trauma, I was not touched in positive ways, and I was passed around to different caregivers.
This means that as I grew up I had to learn how to allow people to touch me. I had to let go of my impulse to injure people who tried to touch me. There are times when my reactions to touch saved my life and there are times today when I still need to talk myself down from what may look to others like irrational behavior.
I don’t think of my natural reactions as a disorder tho. It may feel that way to others, but that just means they have not taken the time to get to know me. Generally, I sum this up by saying I am both instinctually gifted and a little feral.
So yes, I am now looking at healing professionals as teammates and learning to trust them. (Writing this here with mixed intentions, to share with you but also to remind my inner feral self! Ha!)
It has also taken some time to figure how to address the fight inside my body. I have often in my life used the power of my mind to visualize an illness. I have used my mind to picture the bacteria or pain and talk my body through how to release it and fight it.
Cancer has not been that easy. The mutated cells are also my cells. They are made of me. There are no external invading properties. The flaw exists in my genes. I was having a hard time hating myself or part of me. (Which is kind of awesome, in its own way.)
Then I got a call from the doctor. The CT scan shows there is something on my liver. They don’t know if it is cancer yet. If it is, that’s devastating. It means cancer breached my uterus. If it’s nothing, then no big deal.
A sign that there may be a breach pissed me off. It’s like the mutated cells are bullies, coming after all the healthy cells and organs. And that made it possible for me to visualize this fight. The mutated cells are bullies.
Couple that with having cleared up the mean UTI I was suffering from and the gloves are on. I am fighting bullies, which a very natural thing to do in real life! I don’t hate bullies, I hate their behavior. I want to isolate and remove them from the situation. That is my attitude toward my bully cells.
Ok, enough of my inner blabber.
In other news, I had an MRI yesterday so they could get a good look at my liver. I learned something interesting… A CT scan with IV contrast takes two minutes and destroys my heart. An MRI with IV contrast where I’m stuck in this tightly enclosed tin can for 30 minutes is 1000 times easier for me. The contrast fluid for an MRI does not trigger me. As a crackpot scientist, I found this to be fascinating!
My mother in law is staying with us. She is taking some of the daily tasks off our hands and enduring the emotional labor with us. What a saint. I love her so much. Yesterday she sat at the kitchen table with me and we went over all of the appointments, paperwork, and bureaucratic bullshit together.
We have my medical appointments, insurance junk, my husband has a bunch of care and benefits stuff we are working through at the VA, and we have to get our car registered in NY since we moved here a few months ago. Couple that with my work schedule and I have been swimming. Thank goodness she arrived.
(Photo: Street art of a cat. San Francisco, circa 2007)
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 […]