Chemo Brain. It’s a real thing. Chemo brain is when you lose your memory, permanently or temporarily. For me, I can barely remember the 6 months before starting chemo, most of the chemo months are gone, and several months after chemo are also gone. I find writing this blog post difficult because I truly only have bits of memories.
Chemotherapy. I was dreading it, but not nearly as much as I should have. We’ve all seen people on TV with chemo. They look a little pale, throw up here and there, but they still live life. Look at Walter White from Breaking Bad, he started a successful company while on chemo! Let me tell you, TV lies!
The first round of chemo I received while I was still living in the hospital. My friends and family gathered around me as the first batch of poison flowed into my veins. I was smiling and laughing at first, but then some nausea kicked in and it was no longer a party. In addition to the pain of the chemo, I felt sick from wearing dry ice on my head. Brian had bought me some “chemo caps” that you freeze in dry ice to decrease blood flow and thereby chemotherapy to your scalp. The caps had to be switched off every 15 minutes or so to keep them as cold as possible. Putting dry ice on my head gave me a horrible headache, and added to my nausea. But I survived treatment #1 and had two weeks until my next treatment. I was discharged from the hospital and ready to start living my life again.
I moved in with Brian and was quite excited to be living with my first boyfriend, even if the circumstances weren’t that great. We celebrated our six month anniversary, but at this time, I still had stitches in my pecs, so every move hurt. I walked around with my hand over my chest, as if I were having a heart attack, to decrease the pain. We went to a steakhouse, which was a real treat after eating hospital food for so long. My steak arrived and I tried to cut it, but I couldn’t because evidently you need your pecs to use knife. Brian cut it up for me and I took my first bite. It tasted so good in my mouth, but I couldn’t swallow it. My throat was tightening up and the steak was moving very slowly down my esophagus. Next I tried to eat my chocolate lava cake, but unfortunately, I couldn’t swallow this very well either. I could no longer eat my favorite foods.
Even though that adventure didn’t go well, I still wanted to celebrate my birthday a few days later by taking a trip to Pittsburgh. The doctor didn’t recommend it, but I was determined to not let chemo ruin everything. The day of the trip, I felt particularly horrible. Bad chest pain at the surgical site, every bump in the car made me want to vomit, and on top of that, I felt like I had a horrible flu. While driving to Pittsburgh, we stopped to get a thermometer because I felt so bad. My temp was 99.9F. I was directed to go to the emergency room if my temp reached 100.1F. In retrospect, the accuracy of the cheapest CVS thermometer is probably not that great, and I should have gone to the hospital to get checked out. But I was too stubborn and said, lets keep going. When we arrived in Pittsburgh, I was so sick, I could barely walk from the lobby to the hotel room. I spent the rest of the weekend, shaking in bed, staring at the ceiling…too sick to sleep and too sick to live. Brian had really wanted to go to a brewery in a Cathedral, so on our last day, I ventured out of the hotel room. At the brewery, I looked so bad while I was eating that another patron who was also a nurse came over to me and asked if I needed medical care.
After this trip, I gave up on trying to lead a normal life.
Now, It was time for my second round of chemo. My body didn’t tolerate it as well as the first batch. After I left the outpatient treatment center, I couldn’t stop vomiting and had to go back to the hospital for fluids and anti-emetics. After my third round of chemo, I also had to go back to the hospital for more supportive care. After this trip, the doctor said, I either need to learn to tough it out at home or I would have to be inpatient for the next 9 rounds of chemo. I decided to “tough it out”.
After my next round of chemo round, I went home and vomited my head off. Then I would sleep for the next 3 days. I assume I got up to go to the bathroom, occasionally, but I have no memory of that. Words can’t describe how bad I felt waking from my chemo coma. My mouth was super dry, and my throat hurt so much from candidadias that I couldn’t swallow the little spit I did have. I was dripping in sweat from the menopause hot flashes but shivering due to wet clothes. My chest still hurt from the surgeries, and the nausea…..the vibration from a pin dropping would make me vomit. I would fill buckets at a time with various colors of sludge. If I could manage to open the fridge, most times the door was too heavy, I would vomit because the cold air reminded me of the dry ice caps. Driving by the dry ice store also made me vomit. Thinking about dry ice right now years later is making me very nauseous. I was going through all of this to live, but it was just too much. Through sobs and tears, I would ask Brian to kill me because I just couldn’t endure this life (torture) anymore. He obviously declined.
This was my life now. Chemo. Coma. Wish for death. Back to Chemo.
All this time, I had been receiving my chemo in my arm veins, but the medicines scar and kill your veins. Unfortunately I had run out of veins, so it was time for me to get a port. A port is a tube that connects a disc directly underneath your skin to a large vein. Due to my complicated medical history, I had to get the port in my leg/groin, which about 0.1% of people get a port there. Although the doctors and nurses at the Cleveland Clinic had no experience with ports in this area, they assured me that it would not impede my already poor quality of life. I agreed to the surgery, which went horribly. The doctors gave me several medications that I was allergic to, even though I told them several times my allergy medication list. Afterwards, the surgeon told me he wouldn’t work on me again, as if I were my fault the surgery went poorly.
I was in tremendous pain in the post -op waiting room. I asked a doctor if they could do anything for my pain. They told me No, so I just went home in a very pathetic state. I could put no weight on my leg whatsoever, and I was down to one working limb, my left leg. For the first couple of days, I was on a bathroom schedule. Brian would pick me up and carry me to the toilet before work and after work when he returned. During the midday, my good friend Matt picked me up and carried me to the toilet. When you’re healthy, a friend placing you on a toilet seems pretty mortifying, but at this point, I was just a shell of myself and I really had to pee. As the weeks went by, I could limp around, but with the port in, I was never able to sleep on that side, walk normally, or wear pants. Wearing dresses or skirts in the snow in Cleveland, strangers would heckle me…You must wana look cute and freeze! The look on their face when I explain I had cancer and couldn’t wear pants.
I dreaded going to the Cleveland Clinic, not just because that’s where I received my chemo torture, but my doctor and his nurse were really unpleasant. My doctor was really cold and didn’t seem to care about me as an individual. I had no way of contacting him for questions. I could only talk to his nurse, who is the worst person I have ever met. Even writing about her years later, makes my blood boil. I have several examples of her unprofessional and unethical behavior, but here are two of the most upsetting. One day, I was in the dermatology clinic for evaluation of a rash, and they found that one of my surgical sites was infected. The dermatologist said call your oncologist to get antibiotics, but of course I didn’t have any way to talk to him directly. I called his nurse, who said, I could get treatment in three days when she would talk to the doctor. Clearly, someone who has no immune system should not let an active infection go untreated for three days, so the dermatologist reluctantly gave me a prescription.
From the get-go, I had wanted a second opinion, but there was no time at the beginning since I needed urgent treatment. Whenever I asked my oncologist for my records, he referred me to his nurse, who never gave me my records and looked annoyed when I asked. I would fill out forms and submit them to other people and somehow, I still never got my records. Two-thirds done with my treatment, I still wanted a second opinion, so I asked the doctor again for me records. After I left his clinic and headed to the chemo infusion center, the nurse tracked me down and yelled at me saying things like “Think you’re too good for the Cleveland Clinic?”. I stood there shocked and angry, but so weak that I couldn’t fight back. I really wanted to leave the Cleveland Clinic now. I hobbled over to the infusion center secretary to tell her I was ready, and she said, your chemo has been cancelled. Shocked and confused again, I ask how and when was it cancelled. She checked the records and said, here is a note that said, you called in three days ago and cancelled it. Clearly I hadn’t called because my chemo wasn’t cancelled when I checked in and wasn’t cancelled when the doctor approved me to get it 15 minutes early. The nurse out of spite had cancelled my chemo and falsified records. I worked it out with the facility to get my chemo that day, but I did not feel safe. This nurse was clearly crazy and I was not sure how far she would go to stop me from getting a second opinion. For as long as I was awake, I checked every bag of drugs that was given to me to make sure nothing was off. The drugs made me sleep so I asked my mom to check every bag while I was incapacitated. After this chemo treatment, I didn’t return to the Cleveland Clinic.
I switched over to University Hospital Rainbow Babies to the pediatric oncology group. Even the doctors there requested my records from the Cleveland Clinic, and they were shocked at how they never received them. I had such quality care from the entire staff, and I even had the cell phone number (which I never used) to my oncologist. I am thankful the UH could show me that hospitals can be compassionate and healing places.