Thanks to all of you, I have been responding very well to treatment. The treatment can eradicate my symptoms completely for several days. The goal is for me to feel the benefits of the treatment longer and longer, to where I only have to get maintenance infusions every 6 months. After that, the hope is to only have to come in once a year. This is the goal, and we were slowly getting to that point, bbbbuuuttt - I had a bit of a set back yesterday.
Before I go into that setback, I wanted to inform all of you about something really important and a part of GOOD MEDICINE. We run genetic panels on ourselves regularly, and even those with no scientific background understand the basics of genetics. I have taken genetics in-depth in college, and, although EXTREMELY difficult to pass that class, it was eye opening. Both cell biology and genetics tested me in regard to my sanity when I was taking both at the same time, but I learned a lot from those two classes alone. So I have a good knowledge of how our genetics work, and our genetics fuel how we do what we do, whether or not we get cancers, and how we metabolize medication. Knowledge in medicine truly is POWER, and luckily, I have a Fantastic team at my PCM's office that actually do good medicine. A mixture of science, homeopathic remedies, and allopathic medicine. I love them so much that I would seriously fly to see them. They do my infusions for neuropathy, and they were the first to identify that the seizures I was getting from the neuropathy were non-epileptic tonic/clonic seizures and not psychological. Anyhow, They ran a genetic panel on me in regard to medication and how I metabolize it. I am going to openly give you some of my personal information, but I think it is important that YOU arm yourself when you face certain physicians, because, in all truthfulness, you have to fight them too, and the way to fight back is to have knowledge in your brain as ammunition. Even though I know quite a bit being a kinesiologist, most doctors seem threatened when I know more about myself than they do, so having this information from my physician was what I needed.
I am what is known as an ultra-rapid metabolizer. It is very rare to metabolize medication with the pathway that my body does. The enzyme pathway is known as the CYP2D6 pathway, and if you have a decent doctor they will understand what that pathway is. I have a genetically elevated amount in regard to this pathway, which makes me an ultra-rapid metabolizer of most medications. So, what may sedate you, doesn't have the same effect on me. See, this is why I chose who I did, because she is very observant, and predicted that I would be an ultra-fast metabolizer. On the flip side to this, I don't always get the benefit of certain medications because I need such a high dose of it to make it work. My own observation has yielded that most DO's understand the pharmacogenetics report. My team - so my PCM, the treatment team that does my infusions for neuropathy, and my pain management specialist understand this report. My medical oncologist - well, I will get to that later.
So, the funny part. ALL THE MEDICATIONS I have been given DO NOT WORK. I don't metabolize them correctly. When I originally was under the care of AMG with Dr. Kuzma for pain control during chemotherapy, I was wondering why the medication he prescribed was not working AT ALL. It didn't touch my pain. The other medication he gave me did work, but it was only supposed to be used when I felt like I was going to have to go to the ER. The reason why I had to go into the ER so many times was because the medication they gave simply did not work, so I was in pain the entire time I underwent chemotherapy. I also found out that I don't metabolize any benzodiazepines, which made sense because EVERY TIME I had a seizure they wanted to give me anxiety medication but, none of it worked. At one point they gave me so much medication and couldn't figure out why I was still walking around and wasn't sedated. The doctor claimed they gave me enough to take down two horses, but yet I was still talking to him feeling exactly the same as when I came in (like shit). I already knew most of this information about myself, but now I have ammunition to prove it. Also drugs like gabapentin and lyrica do not work at all,. which is why I had to find another way to fix my neuropathy. I couldn't go the traditional route as most do. Getting my report back was quite eye opening in the realization that what I felt in my own body was actually correct. It was important to me to have this at hand because it is something I can use in regard to treating me with the correct medications that actually work right. My advice to all of you is to have your own panel done. It honestly changes the game in regard to care. Also, to add insult to injury, come to find out I more than likely had an allergic reaction to Taxol, the chemo drug that I completed 12 weeks of. It didn't present itself like a normal allergic reaction, rather, my body felt it was going to break into a million pieces when I was first dosed. I felt that pain about 2 hours after my first infusion. From the literature I read, that could be a sign of a slight allergic reaction, and to use caution with Taxol or find another drug. WELL - they didn't use caution, I did weekly taxol doses for 12 weeks, which is also rare and not really standard practice. I wish I had known this at the very beginning. It would have changed how I approached my own cancer treatment. Now I am truly stuck and suffering permanent damage from all of this.
Now, the setback and medical oncologist. Originally, I told you all that I liked my medical oncologist - well I was wrong. I have found out that most medical oncologists have a god-like complex and no matter what you tell them, they refuse to listen. My PCM sent over my pharmacogenetics report only for him not to read it. I had intense anxiety, which can fuel my neuropathy. For me it sorta starts out with intense sweating from hot flashes.. The hot flashes then kickstarts my neuropathy, After that I have roughly an hour before the muscle spasms begin to take form, and if STILL left untreated, tonic/clonic seizures. Yesterday, my neuropathy started, and we told the nurse what medications to give in order to keep it under control, and we gave them the note from my PCM in regard to how to treat it AND the genetics report. My medical oncologist wasn't even in the damn building, and failed to read anything or listen to anything I said, or read anything my PCM sent over. They waited too long and I coded. I seized for 10 minutes, had muscle spasms for several hours. My skin felt paper thin, and I can't be touched because the neuropathy at that point is completely out of control. It feels like my body is fully on fire, and when you touch my skin, it feels like you are cutting into me. That sensation is UNBEARABLE. I don't remember much of what happened, but what I do remember was seeing a full team of physicians and nurses when the seizure stopped. The medical doctors all knew it was neurological in nature, and I had to be rushed down to the ED to get treated. Luckily the DO did look at the report and the note from my PCM on how to treat the condition, and it all stopped. Simple as that. From start to finish in the ED, it only took roughly 2 hours to get me back under control. Had the medical oncologist listened to us, this could have been avoided completely.
The anger I feel is, just, ugh. This experience with medical oncology has left a bad taste in my mouth. She made some questionable decisions in regard to my care, and then she threw me out like garbage when my symptoms got out of control, yet forcing me to finish the 12 week protocol. She also made it increasingly difficult for me to get decent care. I am months behind on my herceptin treatments, which means my risk of getting cancer goes up exponentially since I am HER2 positive. The failure of the medical oncologist to listen to a damn thing I say is the most frustrating part. Because of them, I am in the position I'm in. I do place a lot of blame on the 3 medical oncologists I have seen that have failed to READ ANYTHING. It's like they can't read or listen to save their lives. I have no choice but to go through medical oncology to get herceptin, but - after a while, one gets very tired of ice skating uphill, and I am at that point. I have enough ammunition to prove what works and what doesn't - but it gets exhausting when the one person who needs to listen, refuses to do so. Because of the seizure yesterday, it set me back a bit. I hadn't had one in about 6 weeks or so. I place blame on my own medical oncologist for failing to read anything sent over, and failing to react. My condition is serious, and can cause death - I am not 100% sure that he knows this, but in all truthfulness, I am exhausted and tired of trying to explain why and what I need.
A doctor told me something at one point - he said patients that are in my position sometimes have a tendency to want to give up, because they become tired of talking to deaf ears. While I have not given up, I feel it would be easy to do so. In a sense, I want to, but I know I have to keep fighting for my rights as a patient. I had no idea that as a cancer patient, I would have to fight so hard to get decent care. The medical system seems backwards.
Well that is my depressing update. i wish I had something better, but I don't.
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.
Every few days (as much as I can muster) I will do a giveaway for 4 individuals (or more) who donate $25 or more to our GoFund me. I wish I had the energy and ability to give everyone a gift for donating, but at this time, my body won't really allow it. I am a pretty crafty person, you can always check out my instagram handle: @artemis_creation to check out some of the items I had made in the past. I keep track of the first 4 who donate by my phone, in that it gives me updates on who donates.
Today: The first four from the time I post this blog to donate $25 or more will receive a signed copy of my book, "Kinesiology Taping for Rehab and Injury Prevention." My book is available at every major bookseller, including Amazon.
I wrote this book under my pen name Aliana Kim. If you are one of the first 4 to donate and do not feel comfortable sharing your address, please let me know.
I will send you a message via GoFund me asking for your e-mail address and I will give you mine as well so I can get your items to you. I will try to do something like this every few days or so if I am able. I want to give back a little bit if possible, and just know that I appreciate EVERYONE who donates a little something to help me beat cancer and the after effects it has brought upon me.
Please feel free to share.
below is the link to Our Gofund me site:
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.