Today has been by far the worst day of this 2+ year battle with cancer. I have been struggling with extreme side effects from this pre-transplant treatment of Rituxan and Revlimid. I may have mentioned before, but I’ll repeat myself for those who haven’t read my recent(ish) posts. Rituxan is an infusion that I get once a month. Revlimid is a chemo pill that I take for 21 days straight with one week off in between cycles. It’s not a typical treatment for Hodgkin’s patients so there’s not much research about the side effects specifically for Hodgkin’s.
I have been in so much pain. I came home from work one day unable to walk or move at all. I refused to go to the hospital so I just took as many painkillers as a could and went to bed. But now, I wake up in the middle of the night crying because everything hurts so much. My first ER visit within this month was because I woke up in the middle of the night in excruciating pain. It felt like someone was crushing all of the bones in my legs. I couldn’t walk at all. Justin had to carry me to the car basically and immediately get a wheelchair when we got to the ER. Of course, no one at the hospital knew what to do. My history is complicated so that’s understandable. He called my oncologist’s office to talk to the on-call doctor. She said to call when they open the next day to get an emergency appointment. They gave me more medications and discharged me.
I had already told her my legs had been hurting for a while now but she just said it was a side effect of the new chemo and it would get better after my body got used to it. There was just some hardening on my L 1 vertebrae from radiation.
When I got to their office the next morning, no one knew why. She had me get an MRI to see if there was something they were missing. But, it came back fine. So we just kept going with the treatment. The pain just got worse and worse. Then, they ordered a PET scan to check if the cancer had spread.
At my next infusion, the LPN said that my PET results were good but not much else. I told her I was still having pain. My white blood cell count also came back very low. I was still able to get my Rituxan infusion, but she said to take an extra off week for the Revlimid.
Just filling the Revlimid was a pain. You have to be registered with Celgene, the only company that makes the drug. 21 pills costs around $30,000. I had to call my mail order pharmacy with only 30 minutes to spare to get my pills in time after a runaround with authorization codes anyway. I finally got my 20 mg pills scheduled for delivery in time for my next cycle. But since my oncologist decided to change my dosage to 10 mg, I have to go through the entire process again. My LPN sent the prescription to a Publix pharmacy nowhere near where I live. When I got that corrected, they called to tell me that they’re not part of the Celgene program so they can’t dispense the medication anyway. I called Celgene and they’re not even sure the insurance company will pay for this one because I just got it filled and they can’t take medications back.
Last night, I woke up again in pain. This time it was all in my back, pelvis, stomach, and sides. I had tightness in my chest. I threw up twice. It didn’t feel right at all. So I woke up Justin to go to the ER. They did a chest x-ray and a CT. Everything came back fine. They gave me some potassium, prescribed me some more pain medications and anti-nausea medications and discharged me. I decided to go to work because I was just going to a training today. I was struggling to stay awake. I wish I could tattoo my forehead with, “Please don’t judge me. I have cancer.”
I feel like a giant burden on everyone: my family, my friends, Kelsey, Justin. I feel like people are tired of me complaining about cancer. It’s so hard. I know I’m saying I’m tired all the time, but this is just too much. Just waking up in the morning is such a challenge. I feel like I’m not myself anymore. I can’t do any of the things I used to love. I can barely walk. I try to stay positive and not allow it to affect my work and relationships, but it’s so hard. I just cried so much today.
What kind of life is this? How do people do this with kids? Why won’t the doctors just listen to my complaints the first time? I feel like they’re not listening to me. I don’t want to do this anymore. I want to live a normal life. Even after this is all over, there’s so much more that could happen. It’s hard not to think about. This will never end for me. I just want to live my life.
People keep calling me a hero. I’m not a hero. I’m not a fighter. I’m just trying to hold on. I’ve accepted that I may not make it. I hope other people will too. I’m not saying that I’m giving up. But, sometimes there are other plans in your future. But, I will keep going. I know that the more I endure means less for someone else.
Two years. I have had cancer for two years when my first oncologist told me it would take 6 months to cure. I want this to be over so badly. I want my life back. It’s getting harder and harder to put a smile on every day. I just need some good news that’s not immediately followed by bad news. I need something. I need anything. I can’t live like this anymore. It’s so hard. I just couldn’t be happy today.
“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”