Daily Radiation and Chemo Induced Peripheral Neuropathy

Two weeks after my final round of chemotherapy ended 6 weeks of daily radiation began. By then I was just putting one foot in front of the other. I have heard horror stories of the pain and burning that radiation caused. If I’m being honest, my radiation was not as bad as I anticipated. Yes, I had some burns, deep aching, and additional exhaustion, but compared to chemo, not that bad. It was during these 6 weeks that the Chemo Induced Peripheral Neuropathy symptoms began. At first I didn’t know what was happening. My hands and feet were getting numb and feeling really heavy. Then they started tingling and burning. By the end of radiation I was barely able to walk because of the total numbness and excruciating pain (yes, at the same time) and was shuffling like an old person. The constant pain was so bad I barely got out of bed. I didn’t know how I was going to live like this (let me add that I was still terribly sick and weak from the chemo). My Oncologist sent me to a Neurologist specializing in Neuropathy. After evaluating me she asked what was the dose of chemotherapy drugs I was administered. When I told her about the high dose of Cisplatin she shut my chart and said there was never going to be any improvement. This was going to be a chronic condition I would have to learn to live with. Even at half the dose I was administered the Neuropathy would likely be total and permanent. She prescribed a high dose of Lyrica (which was later changed to 2400 mg/day of Gabapentin), said there was really no need to schedule a follow-up because there was nothing she could do, and that her office would continue to refill my prescription as long as I needed it (as in “forever”). Doctor 1, Hope 0. My logical brain understood what she said, the Cisplatin dose was twice the dose needed for permanent damage, this pain was my new normal. I didn’t want to accept it, but what choice did I have? After all she’s the expert. This is a question I still struggle with every day. You see, this was almost 4 ½ years ago and I am still in chronic pain. But I now believe that that doctor may know what she learned in Med School, but she doesn’t know me, my body’s ability to heal, or my God. I have spent the better part of the last 4 years researching alternative healing modalities and I have tried quite a few. I don’t mind being a guinea pig in this lab called my life. I will biohack myself until I heal this Neuropathy or run out of time on this planet (I will share the different modalities I have tried and what my thoughts/results are in future blog posts). You see, I truly believe that if I have hope it’s not over yet!

 

High dose Cisplatin and Adriamycin

Five weeks after surgery I met with my Oncologist and the recommended course of treatment was high dose Cisplatin and Adriamycin, four days in a row, every 3 weeks, for 6 cycles. And then the words that sent a chill down my spine. “We will take you as close to death as we can every cycle and hopefully bring you back.” REALLY?!? I realize this is a really rare, really aggressive form of bone cancer with not enough of a sample size to determine an approved protocol, but really? I had only two choices, do it with determination and fight or pass on it all together. I determined that if the cancer came back and I had not done it I would always wonder if that would have made the difference. So chemo it would be. What followed was 18 weeks of what Melissa Etheridge described as “descending into hell.” During that time my bloodwork was so dire that I received Neulasta injections each cycle to bring my white blood cell count up from almost 0 (once it was measured as 0.1) and 10 blood transfusions of red blood cells and platelets. Three of those transfusions were on my wedding day. I went in for what was supposed to be routine bloodwork after cycle 4 and they immediately sent me to the hospital for 3 blood transfusions (2 platelets and 1 red cells). Good thing we were only planning to have 6 guests (no immune system, no guests) at our home for the service and my husband’s sister was the minister. My point is, no matter how horrific it was (and it was horrific), I’m still here! Again, don’t let the people in white coats steal your hope. If 1 person has survived it, it is possible and I have survived it. Always choose hope!!