I tend to write and talk about my experience with cancer and how it relates to relationships and sex. While I find this is an important thing to do, I also recognize that it’s not really sex related. I’m writing this to put the story out here, so that it can be referenced as needed.
Starting in about 2008 (18) or so I was having issues breathing and migraines. I was coughing a lot and getting sick rather frequently. I continued to assume that it was just general sick, and mostly ignored it. As it kept happening, I mentioned it to my doctors, and was told that it was a bronchiospasm, and given an inhaler and another medication to help keep it under control. I continued to get progressively sicker, and after catching a cold from a partner in 2010 and having it stick around for months after, I realized that something was wrong. I continued to press after my doctors who diagnosed me with all manner of things. Acid Reflux, GERD(Gastroesophageal reflux disease), allergies, bronchitis, pneumonia, asthma, and suggested I lose weight. I cut out soda, started eating healthier and exercising more, and still, couldn’t get better. In fact, I was getting progressively worse. We moved to the DC area from Pittsburgh and I found a primary care physician who listened, and began to take my complaints seriously (Hey Dr. Desai!)
My amazing primary care physician didn’t know what was wrong with me, so she tried everything she could to figure it out. I was recommended to a slew of different types of doctors who were testing for everything in their arsenal. They gave me inhalers, pills, syrups, anything to ease my coughing and help me sleep. I wasn’t sleeping because any time I lay down, I began to cough. There came a point when I was taking so many medications that my brain is fuzzy on the things that happened. I would remember having conversations with my partner that didn’t happen, and forget ones that did. Not only was this sickness affecting my brain, but it also started to mess with my body too. I was coughing so bad that I was vomiting daily. I was coughing so hard that I couldn’t hold my bladder, and I ended up having to wear pads to assist. My body was betraying me at 22, and I didn’t know what was happening to me. I could no longer exercise, because I could no longer breathe when my heart rate went up. I stopped feeling sexy. I stopped having sex. Forget the fact that I couldn’t breath when my partners and I started having sex…how could I possibly feel sexy, or want to have sex with my partner when I was essentially wearing adult diapers?
The shame of it all was stifling.
Eventually my life became a play, something I felt I had to do to hide my sickness from the rest of the world. I learned how to cough quietly, behind my hand. Enough to attempt to stop the tickle in my throat and allow me to attend movies without upsetting other people. I carried multiple pairs of spare panties with me in my bag on dates in case I was struck with a coughing fit and needed to change in a hurry. I excused myself out of a lot of evenings with friends, and became incredibly paranoid about my own bodily fluids. I was so ashamed of myself and my body, but I knew if I hid away it would only make me feel worse.
Then I got worse.
In March 2012, I felt awful and sicker than I had in quite some time. My partner began to worry and sent me to the hospital. The ER doctors diagnosed me with pneumonia on an x-ray, released me and sent me home with a note to follow up with my primary physician. It took quite a while, but I started to feel stronger. Then, after a camping trip in late September 2012, I started coughing and wheezing. My partners took me back to the emergency room, and the doctors did quite a bit more. With the X-ray and CT scans, they diagnosed me with pneumonia and sent me to follow up with a pulmonary specialist (Shout out to Dr. Herscowitz!).
I saw my pulmonary specialist once before scheduling a bronchoscopy. There was something in my lung and it showed on the CT scan. It was a tiny shadow of a thing, but it was there. A bronchoscopy showed a strange lump of skin that bled when poked. The humor in the situation was that in the pictures from my bronchscopy, the mass looked a bit like the head of a penis, leading to a number of jokes about my blowjobs. My pulmonary specialist referred me to a surgeon to remove the mass and I scheduled the appointment as I waited for my bronchoscopy results to come back.
I waited for the surgeon having told myself that it’s just a cyst, and it’s nothing major, but upon meeting my surgeon, he laid the information down pretty immediately. “You have cancer” is not something someone wants to hear in their lifetime, much less when you’re 23 years old. Having that sentence followed up with “We’re going to have to remove your lung” is equally as unpleasant. No matter how you build yourself up, you’re not ready to hear that information. My surgeon (What up Dr. Khandhar!) was incredible though, and wonderfully efficient. He explained the cancer I had, and how it behaved. He told me that I would have to have my lung removed, but he would do everything he could to save as much as he could. I took a deep breath and scheduled the surgery.
Funny enough, the entire thing happened over about two weeks. I had two weeks to reconcile with the fact that I had cancer, and that my lung was coming out. It was scary. It was heartbreaking. I drafted my living will to ensure that my partners would be able to take care of things if something went wrong. I told my partners I loved them. I wrote everyone I loved letters in case I became one of the 10% of people who did not survive a complete left pneumonectomy. I spent a lot of time alternating between crying, coughing, and making terribly morbid jokes. By the time my surgery rolled around I felt like I was going to throttle the next person who told me to “Stay positive” or that “God doesn’t give you more than you can handle”. In reality, the entire thing solidified my lack of religion rather than pushing me closer to a deity. My partner surprised me with a custom cancer pony because of my love of My Little Pony.
I had my lung removed November 5, 2012. I arrived at the hospital so early that I felt like I shouldn’t have even slept at all. I showed up with my adorable custom cancer pony, and the nurses kindly placed her in a bag and attached her to my clipboard during the procedure. I went in with no less than three IV’s in my arms, anticipating an incision from sternum to shoulder.
After my surgery, I woke up in a room surrounded by my loved one and got the news. The cancer was gone, the lung was gone, but my surgeon took it out in a 5 cm incision. I was okay… I was okay enough to post an “I’m alive” Facebook Post that my friends laughed at.
I spent one night in the hospital and was discharged the next day to recover at home. Two years later and I’m cancer free. I have some bad days. Some hard times when I am terrified that the next cold could actually be my cancer coming back, but I’m still here. I’m still breathing.
To see pictures of the lung and tumor, click here.
To read more about Carcinoid cancer, or donate, click here.