Sunday, March 31, 2024

What It's Been Like

I remember that when I first got diagnosed with stage 3 lung cancer, I worried that I would lose my hair. "That's such a little thing," my mother scolded me. "The hair will grow back." But one of the first times I visited the cancer ward for a round of chemotherapy, I saw a young, extremely thin man coughing into a handkerchief. He was not only bald but also had no eyebrows or eyelashes. I felt sorry for him, but I also tried not to cry, thinking that I would soon lose my hair too. 

I didn't. "You have enough hair for three people," more than one hairstylist told me. My hair is long and thick, and even after multiple rounds of chemo, I still have all of it. Or I may have lost some hair, but since it's so thick, I didn't really notice. 

I remember that my doctors told me, "You're younger than most of the other cancer patients. That could prove to be an advantage in your recovery." When I went to the cancer ward for chemo every three weeks, as well as to receive fluids through an IV twice a week for three hours each time (the chemo was bad for my kidneys, which is why I had to receive fluids), I noticed that most of the patients were decades older than me. One old man sat next to his wife as she received chemo, and he held her hand for hours as she slept. All the patients looked so sad and scared, and I dreaded going to the cancer ward each time. 

What I dreaded most was the lobectomy, a surgery where they would remove part of my right lung and the lymph nodes, the area where the cancer was. It was scheduled much sooner than I expected. I was in the hospital for five days. I remember being in the operating room on the day I had surgery, with the nurses and doctors moving around briskly. And then I remember waking up several hours later, being told that the surgery was over. "On a scale of one to ten, how would you rate your pain?" the nurses asked me. 

"Twelve," I said, as I struggled to sit up in bed. Every time I sat up or even moved, it hurt like hell. A physical therapist had to help me walk for the first time after surgery; I could barely stand up, and when I did, I felt dizzy and tired. I had to use a walker the first time, and I kept wobbling as I walked. 

I remember that it was difficult to sleep in the hospital. The nurses woke me up several times a night to give me medication and to take my vitals. During the day, doctors and nurses kept coming in and out, and the woman I shared a room with, who also had a lobectomy, kept complaining the whole time.

The lobectomy was successful. They removed the tumor. A few weeks after the surgery, my oncologist had me start taking Tagrisso, which is a targeted therapy for cancer patients; he described it as "oral chemo". It's a pill that I have to take every day for three years. 

I took the spring semester off from teaching; fortunately, I had accumulated a lot of paid sick leave since I'd never taken a sick day since I first started teaching in College Town. I didn't want to take time off from my job because it was the only thing that made me feel normal when everything else in my life had turned upside down. But it was difficult to teach during my cancer treatment last semester. I started chemo last fall, and I felt nauseated after each round of chemo. I usually don't sit down while I'm teaching because I'm often writing on the chalkboard, and I move around the room as I talk. But because I felt tired and sick, I stayed seated most of the time. My students were understanding; they felt sorry for me, and one of them told me that they were praying for me. Another student gave me a card after the semester was over, and their classmate gave me a coffee mug and a card.

It was the right decision not to teach for the spring semester. I was in a lot of pain after the surgery; the surgeon said the pain would last for months, which it has. I ended up with a large scar on my body from where they operated on me.

The bad cough that lasted for months, which was what drove me to seek treatment in the first place and proved to be the first symptom of my lung cancer, went away after I started getting chemo. But after the lobectomy, I started coughing again. It's now been almost two months since the surgery, and I'm still coughing constantly. It's worse than before because due to the surgery, I still have pain on my right side from where they operated on me, so every time I cough, it aggravates the pain. My surgeon said the cough could last at least two more months and that it's a common side effect of a lobectomy because my body is adjusting to the fact that I am now missing part of my right lung. I often wake up coughing in the middle of the night. My oncologist prescribed me some cough medicine, but it doesn't help much. 

I get winded more easily now; shortness of breath is another common side effect of having part of your lung removed. I used to be able to work out for hours at the gym at a time, and now I am out of breath just from climbing the stairs of my apartment building (there is no elevator). I feel tired almost all the time, even after getting a full night's sleep. I've lost weight because I struggle to finish meals; I just don't feel hungry most of the time. Food and drinks that I used to love, such as chicken tenders, Frappuccinos, and chocolates, now make me feel sick. My oncologist said that cancer affects your appetite and even your taste buds.

I remember that my oncologist ordered tests to be done on me once a month, to monitor my kidney function among other things because I have kidney disease. The most recent test showed that my kidney function has gone way down since last month. It was always expected that my kidney function would decline because that's a consequence of having polycystic kidney disease. But it's gone down quickly and significantly since I first started cancer treatment. 

My nephrologist, who I met with recently, said it's most likely due to the cancer treatment, especially because the type of chemo they put me on was bad for the kidneys. But as I stated in my last post, he reiterated that I had to prioritize the cancer over my kidneys at the moment, which is why I had to take the risk with the chemo. He said that they would continue to monitor me. He thinks that my declining kidney function might be due to the Tagrisso pill that I have to take, and if it is, I'll have to stop taking it and take a different medicine. But Tagrisso has a high success rate of enabling cancer patients to become cancer free.

I'm scared that I'll be on dialysis years earlier than expected. It's bad enough that I have cancer, but to have to deal with this on top of that is almost more than I can bear. When I saw the results of my most recent tests, I cried in my car in the Walgreens' parking lot; I go to Walgreens often now to pick up yet another medication I have to take or to buy another bag of cough drops. 

I honestly never thought that this would happen to me. You hear stories of people with cancer, but unless it runs in your family, you don't think it could happen to you. And I never expected lung cancer, especially because I never smoked or did drugs and none of my blood relatives have it. 

Whenever people hear that I have cancer, they say, "I'm sorry," with a worried look on their faces, because they all seem to know someone who suffers from it or someone who died from it. There is no cure for cancer, and there's always the fear in the back of my mind that even after going through all of this, it could come back. And if it does, I'll be stage 4, and there won't be half as much they can do for me.

I try to have hope. I was raised Catholic, and they taught us to have faith. But sometimes, it feels like I'm losing mine. 

What about you? How do you hold onto hope when bad things happen?

Monday, January 8, 2024

I Have Cancer

It started with a cough. 

At first, I thought it was allergies. Then I thought it was a cold; I often get sick when the weather changes. But the cough started in June, and by July, it had gotten worse; I couldn't go five minutes without coughing. It was difficult to work out because I couldn't stop coughing, and people moved away from me in public because they thought I had the coronavirus. But I tested negative for the virus, and I'd already received two doses of the vaccine and the booster shot. 

There aren't that many specialists in College Town, so I wasn't able to get a doctor's appointment until August. My general care provider prescribed me some cough medicine and listened to my lungs, which he  said sounded clear. He also recommended that I stop taking one of my blood pressure medications (I take two because I have high blood pressure due to my polycystic kidney disease) because he said it might be causing the cough, although I'd been taking both meds without any problems for more than two years. His supervisor dismissed my concerns when I got upset that he didn't call for any tests and made it seem like I was the one with the problem (I wish that witch nothing but the worst, including a lifetime of stepping on Legos and being stuck behind tall people with big hair at every movie and concert they ever attend.) But my cardiologist, who I also met with in August (I regularly have appointments with my cardiologist and nephrologist to monitor my health due to my kidney disease), also recommended that I stop taking that blood pressure medication. "I don't think it's anything serious," my cardiologist said.

They were wrong. Two weeks later, I went to urgent care. I literally fell to my knees in the shower one day because I couldn't stop coughing. I'd wake up in the middle of the night and cough for several minutes straight. The nurse practitioner prescribed me an inhaler and a week's worth of prednisone and amoxycillin, which helped slightly. 

I went to another doctor, who ordered a chest X-ray. It showed a dark mass on my right lung, so then he ordered a CT lung scan. It showed that the mass was either an infection...or cancer. So he ordered a bronchoscopy, which meant they took pieces of my lung and examined it. 

If it had been an infection, I would have only had to take some pills and go to the pulmonologist a few times. But it wasn't an infection. The bronchoscopy confirmed that I have stage 3 lung cancer. 

I got the test results right before I had to go to work. My voice broke while I was teaching, and I swallowed hard so that I wouldn't cry in front of my students. I didn't understand how this happened. I had never smoked or done drugs. I didn't hang out with people who did. None of my blood relatives have lung cancer.

They did genetic testing, which confirmed that I have EGFR, a mutated gene that causes cancer. They said it was from an "acquired event", which means that something happened to me that caused me to get cancer. But they don't know what it was. 

After that, things happened really fast. I had to get a port surgically implanted into my chest for chemotherapy. I started chemo a week later, and the doctor said I would need at least 3-4 rounds. I also started taking cancer medication for nausea because the chemo made me feel sick and tired all the time. I've been going to bed earlier, but I still wake up tired. I went shopping, and I felt tired just walking around the store. 

Through it all, I struggled to keep up with my work. I was back in the classroom two days after the bronchoscopy. I also had the port placed into my chest on a day I wasn't teaching, and I was back in the classroom less than a week later. I only cancelled two classes because of my cancer treatment. When I got ready for work in the morning, I kept having to lie down because I felt so sick.

Even though I didn't feel good, I kept teaching. My work has always been very important to me, and it frustrated me that I couldn't put in a hundred percent like I normally did. It also frustrated me when I got emails that said stuff like, "Sorry I missed the last three classes, but I have a cold, so could you email me everything I missed?" I wanted to say, "I have freaking CANCER, and I'm still getting all my work done, so DON'T EVEN, okay?" But I didn't.

The chemotherapy they put me on is harmful to the kidneys, and it made my kidney function go down significantly in just three weeks. But my nephrologist told my oncologist, "What good is it to protect her kidneys if she doesn't survive cancer?" He also told me to do what my oncologist said. Because of the effects of the chemo, my oncologist kept me on the same type of chemo but reduced the dosage. He also required me to come to the hospital twice a week, every week, and be hooked up to an IV for two hours in order to receive fluids. It did help my kidney function recover, somewhat. 

I met with my oncologist recently, who told me that I have to do a fourth round of chemo. Then they'll do another chest scan to see how much the tumor has shrunk, and about a month after my fourth round of chemo, I'll have a lobectomy and a lymph node dissection. Basically, they're going to remove part of my lung and the lymph nodes where the cancer is; the surgery will be done at a hospital several hours away because there's no thoracic surgeon in College Town. 

The doctors told me that I'll have to stay in the hospital for at least 4-5 days after the surgery. I won't be able to drive for at least a month. I'll be in pain for weeks, possibly months. Because the surgery and the recovery from it will take up so much time, I made the very difficult decision to take a leave of absence from my teaching job. I will not be teaching for the Spring 2024 semester. Fortunately, I have a lot of paid sick leave because although I have been teaching in College Town for more than six years, I've never taken any sick days until now. It's harder for teachers to take sick days because if we're not there, there is no class. It's not always possible to find a substitute at the last minute, and even if one is found, they won't necessarily teach the class the way I want. 

My mother is angry at me because I won't let her be there for the surgery or the recovery. It's one thing when she's ranting/screaming/crying on the phone or when I visit (I visit my parents for a few days twice a year, although this Christmas I didn't because my doctors say I can't travel; the cancer has severely weakened my immune system). The phone call or visit will eventually end. But when I'm recovering from the surgery, I won't be able to escape her. She hasn't been any help anyway. The other day I was at the hospital, and she called me crying; she was upset because some distant relatives had found out that I have cancer and demanded to know if I'd told them, which I hadn't. She conveniently forgot that she was the one who broadcasted my diagnosis on Facebook. I told her that I was receiving chemo, but she just kept crying and ranting. 

My father got mad at me because although he'll be there for the surgery, I won't let him come with me to meet with the thoracic surgeon beforehand (my sibling will accompany me). He has given me some money to help pay my mounting medical bills, but he said that if I wasn't going to accept his help, he might as well not help pay the bills either. I told him fine and to keep his money. 

My last blog post made me wonder who would be there if I ever ended up in the hospital. All I know now is who I don't want to be there. My oncologist told me, "You have just one shot at beating cancer. If it comes back after all of this, there won't be much we can do." So now, I'm doing everything my doctors tell me to do. After surgery, I'll have to take Tagrisso, which is a chemotherapy pill, for three years. 

I don't want to die. There are so many things that I never got to do. I want to live a better life than the one I've had. And I hope that cancer won't prevent me from experiencing that.

What about you? Do you know anyone who's had cancer? Do you know anyone who's had a lobectomy and what their experience was like?