I have written about my cancer journey before. I’ve mentioned my care team, who make my life easier, and their credentials. I’ve written about how to interact with cancer patients. I’ve even spoken on the topic for a third time at Woodhull Sexual Freedom Summit.
I’ve tried to be kind and jovial, and reasonable about the entire thing. I’ve tried to be educational. I’ve tried to be happy just to be alive. I just can’t anymore. I can’t advocate for patient rights, I can’t advocate for science without a little venom. Coming off a post raging against alternative medicine, I can’t be quiet about it anymore. This post is incredibly, intensely personal. It was very hard for me to write. There are things in here that some of my best friends do not know. In fact, the only person who does know all of this is Jon. Now, I’m laying it all out for you all.
I had walking pneumonia when I was a senior in High School. I was very sick during a production of Footloose, but I kept chugging through it. When the show was over, and I was still sick, I went to see my PCP in Pittsburgh. She told me I had bronchitis and walking pneumonia. I got treatment for it, and most of the symptoms went away. During my checkup after that, I told my doctor I wasn’t quite recovered and I still had a cough. I was told to give it some time. I was 17.
Over a month later, and I was still coughing. At that point, I was told that I had bronchospasms. She gave me Advair and a rescue inhaler. I was told to lose weight, that it would help. I was told that losing weight would probably fix the problem entirely. At that point, I was at my lowest adult weight. I continued to take the medications as expected, and I made a reasonable recovery. This cough continued through two years of college, before I moved home. Even despite making the walk up “cardiac hill” at Clarion University on a nearly daily basis, I was not getting any better with being able to breathe when I got up the hill. I paid it no mind. My weight stayed around the same. Any time I went to see the doctor to figure out why I couldn’t shake this cold, or that cold, I was given an antibiotic and told to lose weight. I was 19.
Eventually, I met the partner who would become my spouse. The first Thanksgiving I spent with him, he got me sick. Of course he did. It was one of the rare times he’s been ill, and so naturally it was more contagious than anything I’d ever experienced. I went home from our trip, snuffly, and coughing. I anticipated it would be fine, just a cold. I picked up some Robitussin and called it a day. I figured that the cold was just aggravating my bronchospasms and that’s why it was taking so long to recover. I had just turned 21.
For almost a year, I blamed the consistent cough to bronchospasms, continued to take my asthma medications and try to lose weight. It was getting harder to exercise when I was getting out of breath doing things that I had done for much of my life. I was finding it harder and harder to hold notes for long periods of time when I sang. I was finding it harder and harder to play my flute. I shrugged it off that I wasn’t practicing enough.
The first time I coughed up blood, I shook it off. It was just a little bit, and chances are it was just from a raw cough. I shrugged it off and kept going. It was just a cold, you know? I was living in York, PA the next time it happened. The blood was bright red in the palm of my hand. I went to the ER only to have them tell me that there wasn’t anything they could do for me. It was probably just a broken blood vessel. They prescribed me some antibiotics, told me that if I lost weight, I would have a stronger immune system. I didn’t have insurance, and I’m still paying that medical bill off. I was still 21.
I was scared. My partners were scared. I was starting to think that there was something really, really wrong with me. I felt like I was stuck in a nightmare, and that the cough would never go away. We moved to Virginia, and a week after my 22nd birthday, Jon and I got married. I had a physician diagnose me with GERD, so I started taking Prilosec. I was informed that if I ate healthier, and lost some weight, that would help with the reflux. Things continued to get worse. I was hardly able to climb a flight of stairs without getting winded. I was tired all the time. My doctor felt that losing weight would help. Maybe I could try yoga, or swimming. It was very hard to continue to move when you can barely breathe. I turned 23.
We moved to an apartment in an area with a beautiful waterfront. My hubs and I found out we were pregnant, and we were so incredibly thrilled. We barely had time to process the news before we found out I miscarried. I was miserable. I couldn’t function. I assumed it was because I was fat, and had heard that fat women have a harder time having children. I internalized a lot of that self hate during that time.
So I walked.
I walked nearly everyday. It was easy to walk in the area I lived in. I walked to work, to the bus stop, to the metro. I walked in good weather and bad. I never lost weight, in fact I gained some, getting to my highest weight of my adult life. Walking short distances left me sweaty and breathing heavily. Eventually I asked my husband to take me to work, because when I walked the 1.7 miles to work, I was barely able to function the rest of the day.
During this time, I began seeing a new doctor. She did her damndest to help me, and expressed a preference that I lose weight, but was never pushy or demanding about it. She understood that it’s hard to lose weight when you can’t work out. I was given multiple inhalers. I was on Prednisone (a steroid) more often than not. I was given a diagnosis of asthma, and a number of other potentials. I took a Z-pack so often that I know how to spell Azythromycin. I took so many antibiotics that I am able to tell you that Levaquin makes me violently ill. I kept getting worse. I had a CT scan [AN 6/28: at an emergency room] that diagnosed me with a touch of pneumonia in my left lung. I was treated for the pneumonia, but it didn’t really get any better. My doctor worked tirelessly, and I will never forget how kind she was.
After one particularly stressful day when I couldn’t get into my apartment, I sat in the hallway coughing, and coughed up about a teaspoon or so of blood. Bright red blood in my hand. I shrugged it off again. Shortly after this point, my coughing spasms became terrible. I was having a hard time holding my bladder. Often I would need to close the store I worked at to run to the bathroom. Often I would miss. I got very paranoid around this time, always bringing extra panties with me, sometimes bringing a second set of clothes. I was 23, and who really wants to be peeing themselves every time they cough? I would leave parties early because I was terrified that I’d cough and pee myself. That I’d sit on someone’s couch and leave a urine stain behind. The concept of that was mortifying. I learned very quickly how to hide my coughs, a tactic that I still use now.
I began wearing pads, but eventually had to switch to adult diapers. I remember the first time I bought a pack, I sat in my car crying. My preferred brand was Silhouette, because I could wear them under my jeans without anyone noticing. I noticed. I noticed all the time. I was ashamed. I cancelled plans. I stopped having sex because I stopped feeling sexy. Jon was incredibly patient with me, but I know that it took a lot out of him. If you know me at all, you’ll know that sex is my preferred method of meditation. Sex is my religion, and I worship with my body. Sex is how I connect with my partners, with my body, with the universe. It was around this time that I sunk into the deepest depression I’d ever been in. My doctors still had no idea what was wrong with me. I went to see an allergist, thinking that maybe it was something in the Virginia ecosystem that was making me sick. I found out that I wasn’t allergic to anything.
I didn’t want to be “that sick girl”, so I spent my time when I had to be social smiling and laughing. Shrugging my cough off as allergies, or a cold, or GERD. I was always sick. I just wanted some nights to pretend to be normal. Pretend as though I wasn’t going to go home to one of the most humiliating parts of my existence. Diapers are nothing compared to what was happening when I was at home. We tried everything. I spent time researching medical interventions, and my doctor, to her credit, helped me try all of the ones that she felt could help. I spent my spare time researching alternative medications. Apple cider vinegar, eucalyptus, mint, custom teas. We cut out gluten, cut out dairy, cut out acidic foods. I ate so much fucking rice during this time period that I can barely stand it now. I tried crystals and healings. I tried meditating. I would have tried anything if it made me feel better. One of the people who worked and lived in our apartment complex commented to Jon that she heard me coughing at night.
I remember spending my nights hacking in the shower. Curled up under the stream of hot water in a too small tub. I had the hot water on my chest, the steam rising up, trying to help me breathe. My coughing spasms now made me vomit. My coughing spasms made me urinate. I spent my nights in the shower curled around a bucket coughing, vomiting, urinating. It was fucking humiliating. I had only been married a year, this wasn’t fair. I wanted to enjoy my time with my partner, not have him rubbing my back when I couldn’t sleep at 2am. I remember one particularly bad night when I hadn’t eaten in about 24 hours because I couldn’t keep anything down, the coughing fits were so bad. I spent my night in the shower and he napped on the bathroom floor, effectively force feeding me toast so that I would stop vomiting bile and mucus. This was the first and second year of our marriage. I wanted to be having sex with my new husband, not spend my night sleeping, sitting upright so I could breathe.
It put a strain on our finances, it put a strain on our relationship, neither of which have really recovered. I started thinking that I was just a hypochondriac. That the things that were wrong with my body were coming from my mind. This was affecting my life so badly that I began researching inpatient facilities for mental health. I felt like I needed to check into a facility that could help me manage my hypochondria. At this point I had a gallon sized ziplock bag of medications. I was taking meds 3-6 times a day. My ziplock was nearly overflowing. Most of all, I felt like I needed a break. So I went camping with my then partner Kai.
Much of the camping trip I spent with Kai, was in the rain. When I came home, I got so incredibly sick, and for the first time had a fever. I got a chest X-Ray and a CT scan. An ER physician gave me Levaquin as an antibiotic and suggested I see a pulmonary specialist. The Levaquin made me violently ill. When I eventually followed up with my Pulmonologist, he pointed out something in my CT scan. There was something in my bronchial tube. I went for a bronchoscopy, and was then referred to a surgeon. He diagnosed me with cancer on October 23, 2012. You don’t forget a date like that. My surgery was scheduled for 13 days after my diagnosis. I had just shy of two weeks to prepare for all of this. Part of that preparation was creating an Advanced Directive just in case I was part of the 10% who did not make it through this surgery. Another part was writing letters to all of the people I loved. I wanted to make sure the people who were important in my life at that time knew that I loved them. 13 letters for 13 days. 12 people I loved and cared about, and a final letter to all my friends to be read at my funeral. “Any surgery has risks” is a phrase I never want to hear again.
I had my lung removed November 5, 2012 from a 5cm incision in my left side. My surgeon wouldn’t let me keep the lung (rude), but he did take photos (more than what is pictured here). The bottom half of my lung was black. It was dead. I had a rotting piece of tissue inside of me for who knows how long.
Were it not for physicians who tried to treat something beyond my fat, physicians who saw my whole health rather than make assumptions in an otherwise healthy 20-something, I would still have cancer inside of me. I would still be sick. I would still be sitting in showers at night, coughing and vomiting. Or, the cancer would have spread and metastasized inside of me. Were it not for physicians that saw me as a person, rather than seeing my fat as something to treat, I very well may have stopped seeking medical treatment, thinking that I was simply mentally ill. I could have died.
Now, instead of being dead, I live with a tiny amount of fear. Every time I cough, every time I get sick, every time I am around someone who is sick. Every time I’m near someone who doesn’t believe in vaccinations I get scared. I get scared that the one lung I have is gonna give out. Every time I get a cramp in my stomach, or have diarrhea I’m scared that the cancer has moved to my abdomen (where this particular cancer typically presents itself). I live my life as best I can, as strong as I can. I also live it afraid that this will happen again. Now, I’m lucky. I get a blood test every few years. I get some x-rays, some CT scans. I go for check ups with my physicians. Everything has consistently come back clear. The fear is still there. Jason Mraz said it best in his song “The Remedy” when he said “The tragedy is how you’re gonna spend the rest of your nights with the light on”. I’ll spend the rest of my life checking to make sure my cancer doesn’t come back, and the rest of my life afraid that it will.
If you’re a patient, advocate for yourself. Do research, and find a physician who work with you and treat you how you want to be treated. If you’re a physician, try to see the whole patient, rather than just the one part of them that you think can cure all their ailments. If you’re a person who doesn’t believe in vaccinations or believes there’s a magical cure to fix all cancers, go to hell. I would have done anything, paid any amount. I would’ve begged, borrowed, or stolen to get that cure. My cancer wasn’t even the worst or the most humiliating. When I see doctors only treating fat instead of treating patients, and people saying that cancer has a magical cure, it’s a slap in the face to me, and a terrible blow to anyone who has lost someone to cancer after spending their time begging for a cure. After spending their money desperately trying to be well.
When my surgeon told me a diagnosis five years prior could’ve saved my lung, I remember a feeling of complete and utter rage. Because I remembered the five years I spent looking for some kind of reason why I was always coughing, always sick. Most of all, I remembered being consistently told that the reason I was sick was because I was fat.
My doctors treated my fat, rather than investigating the real reason I was sick and it could’ve killed me.
In November 2015, I’ll be three years cancer free. I have one of my lung photos framed with the letters I’ve written. They were displayed at an art gallery in Alexandria Virginia. November 5, 2022 I am going to throw a party, and light a fucking fire. I’m going to read all of the letters to myself, except for the last one. The final letter I’ll read to everyone there. Then I’ll throw those fuckers in the fire, and celebrate no longer being afraid.
I’ve learned that I’m a bigger bitch than cancer could ever be. To quote my friend Crista, I am fucking MIGHTY.
-The Frisky Fairy.