So I thought I would write a short blog post to update all of you in regard to my treatment for neuropathy, nerve damage, and seizures. Many of you donated to our GoFund me (we are 1/2 way to our goal) and it is only right that I keep all of you in the loop.
I've been doing this treatment for about a month now. I mentioned to all of you that we spent the initial $3,000 to be treated for the permanent nerve damage I suffered from chemotherapy. We started the GoFund me because we needed help to pay for the rest of the treatments during my breast cancer fight. Well - the treatment has finally bore fruit.
My treatment team is in Wilmington, NC because I was so disappointed by the caliber of care I received from my previous care team. I also made an immediate change with my medical oncologist when she pushed me to continue treatment knowing that I could have irreversible damage from taxol (the chemotherapy drug that you can taste through the IV/port - and it tastes like BLEACH). Another medical oncologist told us he would have stopped treatment because of that exact reason - and I ended up with that exact problem. What they don't tell you is that many patients develop late stage chemo-induced neuropathy on taxol. I am not an isolated case. I may be a severe case, but this is common. So if any of you face this sort of situation know that what you are feeling is real and valid. Don't let anyone make you feel like you're not. I faced that a lot during my treatment, and it was really discouraging and hurtful. I cried a lot during that time. Since I changed providers, I feel like my care team is on my side and advocates for me versus making me feel bad about having complications.
Anyhow, I had my infusion, which lasts roughly 2 hours, and afterwards I had ZERO neuropathy or pain for several hours! It was amazing. I have been living with neuropathy and phantom pain every day for 3 months. Today was the first day I found relief from my symptoms, even if it was only for a few hours. I was so happy I could cry. The treatment is finally working! The twitching stopped, and I haven't had a tonic clonic seizure for about 3 weeks. Even though the neuropathy did come back, it isn't NEARLY as bad as what I deal with on a daily basis. I still need more treatments to continue going on this upward trend, but this was a huge milestone for me. This treatment has saved my life - in that the tonic clonic seizures were getting so severe I thought at any moment I could die if Doctors waited too long to treat me, or I was home alone. My doctors are working with me and told me as I continue to get infusions, I will continue to see improvement.
Those of you who have donated or shared my story, thank you. Your donations are saving my life. These infusions are giving me my life back. I had to stop everything - work, school, crafting, exercise, ALL OF IT. This treatment is slowly giving me a chance at a normal life even though I am still fighting breast cancer. I suffered so much the last 8 months. It has been mentally and physically taxing to fight this battle on two fronts: breast cancer, neuropathy and seizures. I want all of you to know that your money is put away into a separate account and is used for my treatments ONLY. I don't use your money for anything else but my infusions. I wish my insurance covered this form of treatment, but I am happy that I have friends that are walking this path with me. I felt like it was only myself and my husband walking this path, but many of you made me realize that others were walking this path with us. Thank you for that.
We are halfway to our goal on our GoFund me campaign. Please keep sharing and donating if you can. My hope is that my neuropathy will be completely controlled and I will only have to go in every 6 - 12 months for maintenance. I am pretty far away from that goal, but today made me realize that we are one step closer to it. I am so happy at the possibility that I can live without this one day.
Thank you all for donating. I am hoping to open up my ETSY shop again, but I am creating items at the moment for that (as my body permits). Below is a link to our GoFund me that you can share or donate. Anything you donate helps us with the financial burden of this treatment, even though it is worth every penny. I will keep you updated as time progresses, as you all are walking this path with me.