I haven’t posted in a while, mainly due to the fatigue. I’ve written dozens of posts in my head but haven’t had the energy to type them out. This AC chemo + immunotherapy is awful. I’m currently a week out from my third dose and still having trouble getting out of bed. I only have one more, but the thought of going back for my last one is giving me extreme anxiety.

A friend left this comment on Facebook so I decided to answer it here.

how are you feeling?? how many more treatments? can you talk about your cancer? my mom has it and she c/o pain but can’t explain the pain and she says she feels different, but can’t explain that either. i’m always curious how these cells transform our bodies and it’s mind boggling to me. I wonder is it the csncer that changes you or the treatment. whatever is happening in your part of the world, I pray God continues to watch over you and protect you and your family. I hope today is a good day, friend. 

I feel horrible but agree with your mom – it is hard to explain. During the first phase of my treatment (Dec-March) I was getting Taxol (chemotherapy) every week and Keytruda (immunotherapy) every 3 weeks. I would be fairly sick for 2-3 days and very fatigued for 2-3 more. The last day or two before treatment were good, so I looked forward to those. Looking back, I can’t believe I was even complaining. I switched to AC chemo (Red Devil) and Keytruda every 3 weeks and the last couple of months have been so hard. I get sick before even leaving the infusion center and it is two weeks of feeling like I’m going to die. The third week I still feel sick, but it is more like the way I felt for the first medicine. Tolerable.

So what does it feel like?

Fatigue. It doesn’t get better with rest. It is overwhelming. Even small things like sweeping the floor or folding laundry will tire me out and I will need a two hour hap after. Some days I can’t do anything at all. It is hard to explain, but even my brain is tired. Like, I can’t use the energy to think. I’m forgetting words, have to write notes and set reminders on my phone. As soon as something goes in my brain it is gone.

Pain. There is so much pain. I have had a headache for five months. On bad days I can’t even stand to hear the television or music, so I lay in bed in the dark trying to sleep. Everyone responds differently to chemo, but I have a lot of bone pain. It feels like growing pains or shin splints… Also abdominal pain. I don’t know if that is from the chemotherapy or the immunotherapy, but the inside of my body feels like it has been put through a mixer. I can’t point at one specific spot and say that it hurts. It is very non-specific. After starting AC, my abdominal pain has gotten 1000% worse. It comes in waves and when it gets bad, I double over in pain, in tears and unable to speak.

My oncologist said that the chemo works by attacking cells that divide quickly, so any cells in your body that divide quickly are going to be affected. That is why your hair falls out, mouth sores, stomach pain, etc. Before starting treatment, I had no symptoms associated with the cancer except for weight loss.

I also have neuropathy in my hands and feet. They are constantly tingling – like pins and needles.

The immunotherapy makes me break out in rashes all over my body, so my skin is also sensitive.

I have insomnia, but sleeping is the only way to escape the pain. I’m awake at 4 am and end up taking naps during the day. By 7 or 8 I’m exhausted and in bed. But I can’t stay asleep for more than a couple hours at a time.

Nausea. I have three different medications for it and they have worked well to keep me from actually throwing up. But the queasy feeling never really goes away. It feels like motion sickness, but painful? It is like I am aware of every part of my body all the time. While the pain fluctuates, the constant awareness does not.

Any one of these symptoms would be hard to deal with, but the fact that they are all happening at the same time and they never stop is crazy. The mental part is almost harder, because you know that as soon as they ease up you are going in to do it all over again. There is also the worry about whether or not it is working – if this is going to be worth it. I have triple negative breast cancer, which is very aggressive. There is always the fear in the back of my mind that the chemo isn’t working or that the cancer will come back or spread.

Since I started treatment in December, I’ve had fifteen rounds of chemotherapy and seven rounds of immunotherapy. On May 28, I will have my last one (Yay!!). The 29th I meet with the surgeon to go over options and schedule surgery. June 25th I have my breast MRI. Hopefully, the cancer is gone. Of course, we won’t know for sure until pathology comes back after surgery.

Even if the cancer is gone and I achieve pCR (pathological complete response), my oncologist still wants to do another twelve months of Keytruda. If any cancer cells are remaining, she said it will be another six months of chemo, in addition to the immunotherapy. Honestly, I can’t even think about that. I don’t know how I could do this for another six months. So, I’m hoping for the best and trying to keep a positive attitude. That’s half the battle!