It has been sometime since I last updated all of you about my cancer fight. Well, things have not turned out the way we planned, but life is weird like that and it seems like life never goes the way you want it to.
I am still in treatment, but I will start with Chemotherapy. I ended up with EVERY SINGLE SYMPTOM possible in regard to chemo. If you can look it up on WedMD I had the symptoms. The one that is the most pressing is the chemo-induced peripheral neuropathy. It started at late stage for me, so a little over half way through my treatment. I was told by my previous medical oncologist that it would dissipate in a month or so. There is a reason why I said previous, because she is no longer my medical oncologist. She should have stopped my actual treatment when the side effects became unbearable, but she failed to do that. I went through all 12, weekly rounds. Anyhow, back on topic, the neuropathy didn't dissipate at all. Instead, it got insanely worse. Just to give you an idea of how neuropathy feels - it literally feels like you lit your hands and feet on fire, and you will do just about anything to make that sensation stop. On top of that, if you touch the area, it feels a bit like when lidocaine wears off after you have had a procedure done., and then someone just so happened to jab your hands and feet in a pile of needles. I am not kidding about this. This issue is the ONE issue I can't deal with. Joint pain, nausea, diarrhea, intractable pain, water retention, constipation - all of those chemo symptoms I can deal with, neuropathy is on another level to these in my own body.
Fast forward to December 2017, I suffered my first seizure. It started with neuropathy in my underarm. During the lymph node removal, they moved the nerves on the left side. I went to the emergency room, only to have to wait forever. During that time, the neuropathy began to spread into my arms, hands, legs, feet, and torso. I began to try to create another stimulus in order to stop the pain from going any further. My attempts failed at the ED (i was still waiting) and I began to have intense muscle spasms. Those spasms began to get worse and I found that I lost control of my muscles. I lost my ability to speak, and before I knew it, I had a tonic clonic seizure (or Grand Mal). Eventually I was treated, but this was just the beginning of something much worse.
On January 8, 2018 I went to see a medical oncologist and I was having intense neuropathy at the time. I was absolutely scared shitless. I began to sweat, hot flashes in full force, and my face full of pain. She looked at me and said I have never heard of neuropathy this bad before. Now let me tell you all something, my situation is NOT uncommon. It is actually quite common with patients that have taken taxol. I have joined several support groups and some people have even gone paralyzed from this chemotherapy drug. So for this medical oncologist to say the aforementioned statement was appalling - and NO she isn't my current oncologist. Anyhow, I was lucky to be at UNC because my neuropathy turned into another tonic clonic seizure, similar to the one I suffered in December - only this time I all most lost my life to it. I went under respiratory distress, and had to be rushed down to the Emergency Department at UNC. They saved my life in the process. I've had a total of 4 seizures so far. My neuropathy is permanent. Not only is the nerve damage here to stay for the rest of my life, but I was also diagnosed with complex regional pain syndrome. I will live with this agony forever.
Because of what happened to me, I had to stop teaching quite abruptly, so I lost my job. The neuropathy and nerve pain is constant, and seizures not always predictable. I lost feeling in my right arm. While it isn't paralyzed, I have lost complete sensation. I have to fix myself before I can move forward with anything else.
I started an experimental treatment and so far it is working fairly well. We have paid out of pocket roughly $3,000. It is expensive, but it has been one of the only treatments that work for neuropathy AND seizures. Unfortunately, TriCare will not cover this treatment (even though it would ultimately be cheaper for them to pay for this treatment versus the emergency room bills that have accumulated).
Many of you may be asking, why not take Neurotin and a seizure drug? Well, I did take neurotin, and it didn't work. It completely failed, and I still suffer from neuropathy. I am already on a shitload of meds to help me with all the symptoms I suffer from, if I can take less medication, it is worth it to me.
SO - for those of you who have wondered, this is what has happened to me. It has been a really hard fight, and many times, I have felt like giving up. In my mind, it is all most like, is all this worth it? And there have been a few days where I wish cancer had taken my life, because the aftermath has been so horribly bad. Please do not look at that as me being suicidal now, because I am not - it is evident that I am still fighting for my life. - but I didn't anticipate having the fight this on two fronts (cancer and neuropathy induced tonic clonic seizures).
Below I started a GoFund me again. We paid for half of my experimental treatment, and money is tight since I lost my own job. So we are asking for help again, and it is needed. I do my best to keep you all informed on my condition, but for a while it was impossible to do. I hate asking for help, but this treatment is the ONLY treatment that has been working for me - and the long term benefit is high. There is a high chance that I can remove the seizures for good. The treatment works by rewiring the brain and how it deals with neuropathy. I haven't had a seizure since I started this treatment. The neuropathy will pass eventually over time.
This is my update for now. The link is below to donate. I appreciate your help and thank you for reading my story so far. This isn't the end, and I am fighting my ass off to have a successful future. I am not cancer free yet, so I am fighting extremely hard to reach that point, AND to have my neuropathy and seizures under control.
Much love to all of you.