Trapped

Since the surgery Friday, I have really become quite body conscious.

Saturday, I was in agony. Every shallow little breathe I took spurred pain somewhere. My abdominal muscles were cut and I was in a binder which made trying to sit up on my own a scrambling mess. I had to fast for 3 days prior to surgery and then had absolutely no ability to eat. My mother or a nurse had to help me to the bathroom. Even the ability to urinate on my own I had to force. My insides were so swollen that I could barely even piss on my own.

Sunday I came home. Instantly, I had to be better. My mother has to go back to work and is freaking out about leaving me. To get her to calm down I have to now hide my sickness like an animal. That’s what I feel like sometimes, a sick animal. Trying to put on a healthier face than what’s really there so others don’t worry. Smiling through the tears like Pagliacci. I feel like the Performer in me is doing a grand job. Because really right now, I feel very trapped by my body.

I have a friend who is very fit and posts WOD’s (Workout Of the Day) on his facebook feed near daily. I feel jealous that I cannot do them. I feel bitter that these bandages holding me together are really holding me back.

There is a part of me that imagines doing all the fun things I used to do. Biking around Berkeley and Oakland every day. Going to yoga in the evenings and getting that blissful stretch in. Being able to run and jump and laugh without grabbing my ribs and wincing in pain. I actually had to tell someone yesterday to stop making me laugh because it just hurt too much.

I’m afraid of people seeing me as nothing but a sick person so I don’t let them see the sick person part at all. I’m so afraid to show that I don’t feel good to some people and only really feel comfortable being the cancer patient with a few people. When I talk about the trials and tribulations of cancer to some of the people in my life I can see this depression and fear roll over their eyes. It’s a bummer and they want no part of it. It makes them uncomfortable and they don’t know what to say. But it’s my life right now. It’s what I have to experience. I don’t begrudge anyone of living a normal life and sharing that with me. I just feel a little jilted when I listen to tales of dating and kids and cannot share chemo and cancer.

On Surgery

So, I did it. I went through with the surgery and lived to tell the tale. For those of you who want in depth details regarding it – here it is.

They put five new holes in me. One on each hip, through my belly button and one two inch incision right above my pubic bone where they dragged my uterus and remaining ovary out. The fifth hole is on my right lower rib. That’s the port they implanted to be able to pump the chemo in Intra-peritoneally.

Right now, writing is difficult for me. Perhaps it’s the morphine haze I’m in or perhaps something else but right now words are not coming easily to me. Right about now all I want to do is turn on the TV and just allow myself to be thoughtless and stupid. I want to not think right now.

So that’s exactly what I’m off to do. More updates later.

Me right before surgery.

And Now, For Something Completely Different…

Hope. :)

For the first time in three months today I actually felt a glimmer of hope and joy. I met with my surgeon today to discuss exactly what it is we’re going to do this Friday (FYI – I climbed off the crazy horse and re-booked my surgery) . I went in there with my list of requests preparing to negotiate things such as keeping my cervix and minimal incisions. To my surprise, he agreed with me. There was no need to take my cervix so I could keep it. They would do the surgery laprascopically. A port will be placed under my skin against my rib cage for the IP (Intro-peritoneal)  chemotherapy.

After discussing completing the surgery and chemotherapy, I asked my doctor “So…what happens next?” . He replied that I get back to my life. The concept of that seems so foreign now. It has only been three months but it feels like 3 years of dealing with this. I don’t completely know how I’ll adjust to my old life, but lets take a look at what we can expect…

Old life was….

Me working for a jewelry store in winter. I had a promising burgeoning relationship and a social life. Christmas was just about to happen and I was completely healthy. I rode my bike down San Pablo Ave. everyday and had a routine. I had an apartment.I had a beautiful head of raven hair. I had room mates.

New Life…

New apartment (yet to be found) which means a new bike route to work. Going back into life and seeing people who I haven’t seen in 3 months bald. Explaining to my clients what I’ve been doing these past 6 months. Doing things for myself again like grocery shopping. Not feeling tired or in pain all the time. Being single and dating again. Leaving behind people in Sacramento that I have really come to love and be close to who are still struggling with disease themselves. Not depending so much on others to help me. Being independent again. Going to school.

While I’m very excited about the dream of my new life, I am also scared. I am scared to believe that it is possible. That there is life after cancer. I am forever changed by this disease. In my brain – I am somewhat stuck on Christmas Eve 2011. Time stopped for me then. Christmas never came and I took on a new identity in the blink of an eye. For the last 3 months I have been preparing to die. Now, how do I live?

I guess we will have to see…

Time Delayed, or Not at All

I have made the recent decision to not have surgery at this time.

It’s not because of anything health related. It’s because to my mother, getting her way is worth me dying over.

I recently had an amicable breakup with a guy I had been seeing for 4 months. It saddened me sure, but I prefer to mourn the loss privately. I knew if I spoke about it to my mother, all she would do is demonize him and it would not make me feel any better. So what does she choose to do?

First, she harasses me constantly by pounding and screaming through my locked door that she wants to know what happened. She harasses him via text and phone demanding to know the details. She has absolutely no respect for the fact that I am an adult and NOT 15 years old. She doesn’t care that stress exacerbates cancer. What happens in my personal love life is none of her or anyone elses business.

My ex and I remain on good terms. We are friends. When I told him my surgery date he offered to come to stay and help. I accepted. My mother will not allow him to stay here because she feels he “was mean to me”.

Now firstly, that is an incredibly juvenile term for a 48 year old woman to use. Secondly, he was never “mean” to me. Did he beat me? No. Did he run around on me cheating? No. It is my business who I keep as my friends and honestly he was offering to help HER with the care of me.

All of this is a childish way of trying to control me and the situation. I refuse to be controlled. If my mother is going to restrict access to those I care about as I am potentially dying of cancer then I will leave. I will move out. And that is exactly what I am doing. I would rather die free then live in bondage. I realize I am playing with my life and I honestly don’t care. Everyone in my life talks about how much they love me yet rarely prove it with selflessness. If my mother really did love me she wouldn’t sacrifice the life of her child to retain her own dignity.  If my bay area friends really cared one of them would let me stay with them until I found a place. I have done that with my friends (Hell, one of my friends lived with me for 3 months in NYC when he wanted to move here – in a studio no less!). I’m not asking for hand outs – I will pay my share of the rent and look avidly for other places. Yet there have been no offers.

I feel so sick and tired of fighting for a life nobody really cares about. I am sick of hearing people proclaim love without the actions to back it up. Unless someone can convince me with actions instead of words that my life is worth something, I see it obviously isn’t.

And I am letting nature take it’s course.

How it all Began

I'm the one to the far left not smiling. Can you guess why?

Christmas eve of 2011 began as an ordinary day. No, in fact it began as a great day. I woke up in my apartment in Oakland CA and ate breakfast for the first time in 4 days. I had been mysteriously sick and hadn’t been able to eat anything. For the first time in days I actually felt great.

On my bike ride to work I was a little sad because I would be  spending Christmas Eve alone. My family wasn’t coming up to see me until tomorrow and my new boyfriend of the last month and a half had already gone to visit his family. A few solitary tears rolled down my cheek as I pedaled.

At the Jewelry Store I worked for it was all holiday cheer. We had matching light up Rudolph shirts and festive accessories. The customers were out and we were making money. It was an incredibly busy day. Since I was the opener I took my lunch early. At 11:30AM I called my boyfriend Jeremy and discussed some holiday drama that was occurring. At 12:15 I was sitting in the stockroom in the back of the store. “How are you feeling?” my manager Courtney asked. “oh great! Thanks for asking” I replied. Yet literally as the words escaped my lips I felt the beginning of a pulling sensation in my lower abdomen. I attributed it to cramps. After all, I was just a few days out from my period and I knew I wasn’t pregnant because I took a stick test a day before due to the persistent nausea.

At 12:20 I went out to Courtney and let her know that I wasn’t feeling that great again and it was just going to be a minute. Since only one person can go to lunch at a time I was holding up the line with my sickness drama. But as I sat in the bathroom trying to will this pain to go away it only got worse. 5 minutes later I would be writhing in pain on the floor.

I waddled out to the front of the store and told Courtney I needed to leave NOW. I was visibly hunched half way over and very pale. Not wanting to pay for the ambulance ride I asked them to call a cab. “cab will be here in 30 minutes” my coworker Patrice informed  me. “Just call the ambulance. I can’t wait that long” I screamed. Since I couldn’t sit down I was resting my knee on a chair. I had tried to sit down and it hurt even more. The ambulance arrived minutes later as well as the owner of the company. She had just finished battling breast cancer just a few weeks before and was herself recovering from surgery. She had come bearing tacos as a holiday treat and was surprised to see me being wheeled out on a gurney.

The  ride to the hospital was hellacious. Every bump and pothole had me screaming in pain and clawing the walls. For those who live in Oakland/Berkeley you know there are a lot of potholes. The EMT gave me two shots of morphine by the time I got to the hospital at 1 and the pain was still not all the way gone. I called my mother after I was checked into a room and she offered to come up early. “Nah, I’m sure it’s nothing mom. Don’t waste a trip”.  A few minutes later I would recant that statement.

After examining me the doctor was pretty sure I had diverticulitis. She wanted to do a CT scan to make sure but informed me of the cancer risk associated. I almost did not go through with the scan for that reason. The scan yielded the results that I had a grapefruit sized cyst hanging from my right ovary. “Probably nothing” the resident assured me. Probably nothing? NOTHING? I had a huge…thing…growing on my organ and it was probably nothing? I wanted it gone.

They decided to hospitalize me after the ultrasound yielded the result that it was septated and did not look like your average fluid filled cyst. My parents arrived and around 10 pm that night I was checked into the in-patient ward of the hospital. Christmas day I met with the surgeons and it was me who asked them to take it out. I didn’t like the idea that this pain could come back and that I had something massive growing inside me. They wouldn’t know for sure until they were able to remove and biopsy it whether or not it was cancer. Since I was so young they didn’t think it was.

As I was wheeled into the OR I remember visually taking stock of everything I saw – overhead lamp…check. Scary looking scalpels and instruments on table…check. Doctors and nurses running around repeating medical jargon I had no clue what they were saying…check. I was surprised to be lifted onto the operating table under a comfy hydraulically warmed blanket with the image of a teddy bear on it. The anesthesiologist said she was injecting me with some medicine and after that there was nothing.

What felt like minutes later I was being wheeled into the recovery room screaming I was in pain and begging for more morphine. I was begging them not to release me since they said before I would be going home that night. I was in so much pain. I recalled a scene from When Harry Met Sally in which Billy Crystal said he would just sit at home and moan he was in so much emotional pain . That was exactly what I was doing…sitting there helpless and moaning a very guttural soft moan. I was surprised to see my mother and father sitting there. They had told us before that family was not allowed in the recovery room. “Meh, they’re being lax with their rules” I thought. As my mother talked to me everything seemed like it had gone normal, until I looked at the clock. “Is it really 8pm?” I asked. My mother nodded in agreement. Considering I went into the OR at 3:30 and this procedure was supposed to only take about an hour something was amiss.

The surgeon came in as the pain started to subside and delivered the news to me. They found cancer. CANCER. Was I dreaming? How could that be? I was young. I did yoga and was a vegetarian. I didn’t smoke. I biked at least 10 miles a day. I did all the right things and I had cancer. I looked to my mother and she calmly nodded in agreement. The recovery room nurse was looking at me solemnly. Everyone knew before I did and nobody told me. I felt like I was just let in on some cruel joke. As I was being wheeled back into my room I saw Jeremy’s face in the waiting room. He came and sat down on my bed quietly. I asked him what he knew. “Everything” . “Yeah, well do you know I have cancer?” I asked in disbelief myself. He said yes.