Hello everyone. It has been some time since I last posted. I am currently writing my book on my cancer journey, so I haven't had as much time to blog on my site. I felt compelled to write today, on Easter, because in the wee hours of the morning, things reached critical mass in my home. While everything is fine at this point, it made me want to address something that I think will help others that have a serious medical condition or conditions, not just cancer.
Having a medical condition, especially a complex one, can be severely taxing on immediate family in the household. While yes, primarily it is the individual who is suffering bearing the brunt of a lot, the family advocates for the individual. There is a reason why there are support groups for caregivers. My immediate advocates has always been my husband and sister, who both have taken a lot of time out of their work schedules and personal lives in order to care for me while I was at my worst. My mother-in-law and my biological mother have also taken time/resources/money to help us. Many of you are walking this path with us - in everything you have done in donating, calling, messaging, the whole works, which I am forever grateful. When I felt like my life was not worth living, and honestly felt like giving up on everything, it is my tiny family (not all biological), my friends, and my military family who has rallied around me to push me forward. I want to tell all of you: THANK YOU. You all mean everything to me.
I will use my situation as an example for this post. Many of you already know I suffer from Breast Cancer (triple positive) and non-epileptic seizures/dystonic tremors. My condition with dystonia is EXTREMELY rare. I was recently diagnosed with it through a neurologist, but we have always known how to combat it. One of the symptoms for me for a dystonic attack and/or tremor is my voice box will begin to seize and I also get a form of lock jaw. Eventually, I lose my ability to speak, so my husband has to speak for me. Once a dystonic attack has started, it doesn't stop and has to be treated immediately, or it becomes a lethal situation. When this happens, the person to speak for me is my spouse. If a doctor is a complete asshole, guess who he/she/they scream at? My husband! I have seen this in full action, and felt utterly hopeless in the fact that I can't speak for myself. Being a caregiver isn't easy in that you are dealing with the brunt of what the medial community brings at you. So, what I can say, is make sure you have a group of providers that understand this element and treat BOTH parties with respect. We have had a handful of doctors AND nurses (hate to say that) who have been utterly nasty to my spouse, even though he is doing exactly what he is supposed to be doing - advocating for his spouse, and I do the same for him when he is sick or has surgery.
While not going into too much of the details, things reached critical mass at around 12:00 AM on Easter Morning. I began to seize AGAIN - because two of my triggers for seizures are lack of sleep and extreme anxiety. My condition is not under control yet, so the "big" cancer hospital refuses to take my case, even though we (myself and my spouse) have been working our ASSES off to get things the way the medical establishment wants it. We got the care plan they wanted from my primary care, the diagnosis codes, and ALL MY MEDICAL RECORDS so we can be treated fast and effectively if I have to go to the Emergency Department. It gets old when doctors see that and throw it back in your face. The odd part I will add, is that nurses have told us we are the most prepared and well informed couple to come into the ED. We now exclusively go to Womack ED because they actually called my care team to confirm all the paperwork, whereas Moore Regional ED failed to do that and pretty much told my spouse that we forged the letter from my primary - even though we told them to call her and they will tell them the exact same thing - I have NEVER forged a document (and I can go to JAIL for that).
Anyhow, last night I had to go to the Womack ED because my seizures became out of control at around 3:00 AM, after having seized for about 3 hours. We fought before we went into Womack, and I mean blow out fight in my fragile state. I again, lost my voice, and it was just overall terrible. I realized then that cancer, the seizures, everything had taken a huge toll on my spouse and myself. We had to make changes in order for our marriage to survive this. We could no longer revolve our lives around the medical system, in that it can become extremely stressful. We both needed to do better for ourselves and each other. Our lives for the past year has been nothing but medical visits and dealing with my deterioration.
After everything was all said and done, we both equally came to the realization that in order for us to survive this together, we needed to work on us. We have to take care of us first before anything else. It isn't about the physicians, in case they forgot, it is a service position, but increasingly it became all about them and their fear of losing licenses in NC, not me, not my spouse, not my family, only about them. The treatment protocol works, and for a while it was working really well, until triggers left and right just happened.
We decided that we needed to take care of our individual selves in order to strengthen our relationship. So, I wanted my spouse to hang out with his friends, workout more often as that is an outlet for him, and to spend more time doing things that help him relax. For my part, I plan to get more massages (I haven't had one since my diagnosis), float tanks, facials, and eventually I will workout again. For those wondering, I can't workout until I go at least one month without a seizure - so you can imagine how much that drives me crazy. As a couple, we plan to do a stay-cation (hopefully this week as this is an emergency, but we are waiting for a few medical reimbursements) and just leave our home for a few days to just get away from all this. We both realized that we were giving everyone so much power over our marriage, our emotions, and our sanity - so we plan to release that and come together to fight. We need a reprieve before we head back into that fight.
Anyone going through something similar, my advice to you is that you can't take care of anyone if you don't take care of YOU. Some may find that selfish and say, well I AM THE ONE FIGHTING! But honestly, My spouse and I are BOTH fighting. His feelings and thoughts are just as impacted as my own. Caregivers need the time away from the situation. The person affected needs time away from the caregiver on occasion. It is about maintaining your own mental wellness and balance. Once that is maintained, you are more prepared to deal with whatever comes in your direction.
I'd like to add that another reason why we feel so much stress is that physicians fail to understand sometimes that it actually takes a long time to get in with some of these specialists, and blame us constantly if they believe we are not moving fast enough. We have had to be extremely firm in saying that we have done everything we can physically do short of just walking up in there (the drive is over an hour so that was not an option). First, we scheduled with Duke - only to be booked out by 4 months. They told us we were lucky - usually people wait anywhere from 6-8 months. We then decided to research neurologists that specialize in movement disorders and got a call from Raleigh. We were able to get in within 2 weeks because of a cancellation, so we got extremely lucky. We have the EEG scheduled already, so we are moving rather quickly, but I still find it odd that physicians (medical oncologist specifically) believe that we are sitting on our ass on this. Actually, we busted our asses (including my primary care and the nursing team) to get those appointments. Instead of bashing us, I wish they would say okay instead of this long ass lecture on things we already know.
I want to state that my case isn't exactly unique. My friend with cancer ended up with Bell's Palsy for over a month. So nothing about me is truly extraordinary in regard to what happened to me after chemotherapy.
YOU are important, and no matter what may be going on, each individual should take care of themselves in order to keep their own sanity.
Thanks for reading as always, and if you have questions for me, feel free to ask. I'll be happy to answer.
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.
It has been quite some time since I have last written a blog post about my cancer battle. I do my best to do short updates on facebook, but since one of the horrid side effects of chemotherapy is the inability to sleep properly, I thought I'd update you all on how things are going, and just be an open book to you guys.
My first infusion did NOT go as smoothly as I thought it would. First, I was in the infusion POD for over 5 hours. I did not anticipate the searing pain I'd experience after the infusion. The really horrible thing about chemotherapy is that it really is a crap shoot on how your side effects will manifest. Some people have zero pain, just severe nausea, vomiting, and diarrhea (among other things). My personal side effects manifested as severe joint and bone pain the first night. I honestly felt that every bone in my body was breaking to pieces, and it took every ounce of energy I had to make it to the restroom. It was awful. I have never felt such pain in my life. I screamed in pain that night as it was so incredibly difficult to get through it. Day two, well the pain isn't AS BAD, but food was just so unappealing. My stomach was mostly in knots all day, and all I wanted to do was vomit, which I did. Unfortunately for me, my chemotherapy manifested itself with constipation versus diarrhea, so I can't really figure out which is worse. I can't eat much at once. I am pretty much relegated to soup, oatmeal, and bread - oh and protein shakes. I tried eating different things, some made me sick, so it has been a lot of trial and error. My hair has already begun to fall out. Every time I mess with it all kinds of hair comes out - which I was not expecting until around week 3.
I can't say this is easy. This is incredibly difficult and much worse than the bilateral mastectomy. I am really fortunate to have a job that keeps my mind off of some of the worst of it, but this is really testing me mentally and physically. I know I should be happy that at least my cancer was caught very early on, but it is hard to have those feelings when you feel like you're dying once a week. Luckily, I have a pretty amazing team of physicians between here and Chapel Hill. It is a totally different experience versus what I went through in Vegas.
Chemotherapy has tested me in a way the bilateral mastectomy did not. I feel much weaker with chemotherapy - and the end is not in sight. This isn't a month of healing. It's a full year of SHIT - the worst of it being the first 3 months. I am extremely nauseous right now, ugh. I want to workout, but it seems it takes roughly 3 days for me to recover from treatment - and I receive treatment every Tuesday morning. So counting Tuesdays, I will probably change my workout plan to Friday, Saturday, Sunday, and Mondays (If I can deal with that).
I can honestly say I feel all most a shell of my former self. It is hard to accept the body I have at the moment. I know I should appreciate my body more for fighting, but it is hard to be in a position like this when I have lived a healthy lifestyle all of my life. I miss my strong body so much. I guess I should be thankful that I worked so hard in the beginning, because I feel like I was better equipped to deal with the torments my body would go through for the next year and a half. I am really happy I worked out as much as I did, but I also miss the part of me that lifted heavy things, ran, and was trained to fight with or without weapons. I miss that part of me. I know those parts of me are not gone forever - they are just sort of lying dormant for the next year. As I say this, it doesn't exactly make it easier either.
Many of you already know that my breast cancer was not genetic (not all breast cancers are genetic people). My cancer was more than likely an environmental cause. I have a lot of time to think - and I was diagnosed with cancer in Las Vegas, and more than likely cancer cells started making their happy way throughout my body about 2 years prior to my diagnosis. Las Vegas is probably one of the most toxic places I have ever lived in. Some areas you couldn't even drive on because of radiation and other toxic waste. The smog was so bad (not as bad as L.A but close) and the air quality was just awful. I sometimes wonder if the environment I was a part of contributed to my cancer diagnosis at such a young age. For this reason, after my treatment is complete, I plan to get my MPS (Master's of Professional Science) in Toxicology. I would like to specialize in Environmental Toxicology. I plan to start studying for the GRE in about 3 months, and apply to the program at UNC Chapel Hill. I have the classes to apply right off the bat (thank god) so I don't have any pre-reqs. I need to take besides the GRE (yuck). It will take me 2 years to complete, but this experience changed my outlook on how I see our world, and in some small way, I'd like to make a change. Even though I teach college students, and I do enjoy it - it is NOT my calling in life, but I honestly believe what I have decided to do is the direction my heart is wanting to go.
Well - sorry for the long post guys. Long update. I hope you like the new format I picked for my page since I am no longer practicing massage therapy/rehabilitation anymore, I wanted to change my page a bit.
OH - which reminds me. I noticed a huge influx of yoga instructors and those going to yoga teacher training. Although I left yoga years ago, as I felt that it wasn't for me to teach, I want to mention something to you. I know it is cool and hip to do certain types of yoga, but this area actually has a huge population of cancer patients, and I was super surprised to see only one location that offered yoga for people with cancer (in Pinehurst). I am a cancer patient, but I see other people like me or worse than me on a daily basis, and many of them could benefit from someone with some knowledge about cancer and how yoga may benefit them. I know when I practiced as a massage therapist, I did donate some of my time to charitable events and things of that nature. If you are an instructor, it may not hurt you to donate 1 day a week or 1 day every two weeks or even once a month to cancer patients. Many of those patients will go into remission, and may see you for some of the harder classes in the future. But it doesn't take much to make someone in this situation happy - and it is an amazing way to give back to your own community, especially a community of individuals who are struggling.
Okay - Much love my friends. Thank you for all your support and love that you all have given me the last few months. You all have given me strength to continue and that means the world to me.
- Amber -
If you follow my Facebook you probably already know about my consultation with the medical oncologist. Well, I thought I would give you all the details of the events of today. First, I saw my plastic surgeon Dr Roughton. I sort of royally screwed myself because I worked out yesterday and holy jesus I was in a lot of pain today. So much so that at one point I felt like my upper chest was on fire. I get phantom pain in my chest area - and that was in full force today and still ongoing. By the time I saw medical oncology, I was crying in agony. Soooo yeah, I did breakdown eventually.
I will be undergoing chemotherapy and taking herceptin. My type of chemotherapy is not as bad as some, but I will have some of the same side effects, just not at the same intensity. For 12 weeks I will be going in for chemotherapy treatments once a week. You have to sit in a chair for 90 minutes so that is something I am not looking forward to. During this time, I will be doing herceptin treatments (which is also IV) once every 3 weeks for a full year. So, since both drugs are IV based, I decided on getting a portacath placed inside me so I don't have to be IVed several times. Basically, this treatment plan will eradicate any lingering cancer cells that are looking for a nutrient source.
I will admit to you, this has not been the easiest road to travel on. Depression hits a bit hard when you can't workout and your body has changed on you. Chemotherapy will force my hair to fall out, and I will go bald for a period of time. The hormone therapy in pill form I will be taking for 5-10 years. The goal for me is to go into remission - I am not there yet and won't be for an entire year. That can be a hard pill to swallow. I can't exercise for another week or so - basically there are some areas that have not healed from the double mastectomy.
I am prepared to undergo chemotherapy. I did have an odd experience with the cancer support coordinator. She was a PA-C that decided to practice in psychiatry. One thing I will tell you, in my own mind I can really only handle one big hurdle at a time. Trying to dig into my past and deal with some of that bullshit is really for another time. It always feels weird when you feel pressured to talk about your experiences in life, especially since I have made the decision to not let those situations define me. One piece of advice I would probably give her is that I can face cancer head on, but the rest of the bullshit will have to wait.
I am a bit of a realist - it is impossible to stay positive 100% of the time, and today was one of those days that positivity was just impossible.
Well, I am starting to feel a bit normal, which says a lot considering I still have tubes in my underarms and no feeling in my chest. The surgery was, well, the most painful surgery I have ever experienced - but I should remember I did undergo a double mastectomy with reconstruction at the same time, so, it wasn't going to be the most comfortable surgery I have ever endured. I did stay overnight at the hospital, which, if you have ever stayed the night at the hospital, you will know you get everything BUT SLEEP. They wake you every 4 hours for medication, bathroom breaks, ect. So, I was ready to be home when I came home.
For the most part I am healing pretty quickly. I don't feel as much pain at this point, and I can take a shower (no soap though, UGH). I think a lot of what you experience is mental, but you do feel pain from time to time. I just feel fortunate that I could exercise today for a good 32 minutes. I guess I should start from the beginning. The first day is by far the most painful. I don't remember this, but I was in so much pain I was crying and the anesthesiologist had to do a hard reset on me. After I came to, I was being rolled into the short stay room. After that, the pain was there, but always under control. When I came home, it was hard getting up and down the first day, but thank goodness for TGU because I actually used much of that technique to get up and down. I am 4 days post op and I actually feel pretty decent. I can move my arms, workout lightly, get things unassisted, take a shower, put my own clothes on - you know the basics that you sometimes take for granted when you realize you can't do it on your own.
One thing I will say that makes this difficult - I look different. Not my face - but my chest area. Dr. Gallagher and Dr. Roughton did a FANTASTIC job, I mean, on the plastic surgery end they didn't have a TON to work with, but she made the transition much easier for me. Dr. Gallagher saved my life. She removed all the cancer growths in my breasts and lymph nodes. My left side looks well, not like me. The first time I saw the divet where my lymph nodes were located I was quite shocked. I understand that I will NEVER look the same again, and that is a tough pill to swallow at age 31, but for me, I realized it was either have cancer kill me, or get it out of me. I think anyone would choose the latter. I am really proud of both of my surgeons. I honestly couldn't have asked for a better team to work on me. They saved my life and made me look right at the same time. I understand that things will be different - I have absolutely no sensation on the front of my chest (ZERO). I do get phantom pains sometimes, which was something we expected, but it isn't bad. It just feels weird. Overall, I am happy to be over this first stage of cancer treatment.
Stage 2 is chemotherapy. We are not 100% sure if we will have to undergo chemo, but we do know that I will be taking the medication herceptin. That is about all we know for sure. It really depends on what the pathology exam shows from this past mastectomy (yes they sent ALL the tissue to a pathologist). Once we get an idea of what the pathology results show, we will know how aggressive the treatment for chemotherapy. I was lucky to have caught this in the earliest possible stage. If you are going through something similar, the best advice I can give you is BE PERSISTENT. Some doctors will tell you, you're crazy or it's in your head - well, let me tell ya, it wasn't in my head it was full blown cancer. So listen to your body.
I hope to update you guys a bit more frequently, but I had to recover a bit in order to get my thoughts together. I feel okay now and ready for physical therapy to actually start for me, but I have to wait till the tubes are out (less than a week).
Much love and thanks for reading. .
Well, tonight is my last night with my real breasts. Honestly, I am really okay with this situation as my breasts have been hurting me for the past month. So, I apologize in advanced for any typos, ect. because I am in a hotel room writing this and the WiFi sucks ass - like every damn hotel you go to.
I have to be at UNC at 6:30 AM, and that is damn early - but the surgery starts at 8:00 AM. I would be lying out of my ass if I said I wasn't scared. Yes, I am scared shitless. This surgery is incredibly invasive and I will be out for roughly 5 hours. I have no idea what to expect afterward. All I know is that I will be staying the night at the hospital before we head back home to our area.
One thing I will say is that having my husband and my sister Ashley here has been a true blessing to me. When I was hurting the most, my sister knew how to make me laugh and calm me down. Both James and Ashley have calm demeanors and that is lifesaving when you get nervous. Having both of them here has made this experience run smoother for me and I am forever thankful for both of them. I love them both for the sacrifices they made to be by my side during this time. During a time like this, I have to say, having a support system, no matter how small, can make a huge difference in how you react and feel to a scary situation.
Tonight is the last night I will ever have real breast tissue or nerves in my chest. I am afraid of what else they may find, and if I will lose some of my pectoralis major muscle since the tumor is located around that area. I won't really know 100% of what they performed until after it is completed. I have full trust in my physicians to do a great job and essentially keep me alive.
I will be offline for sometime in that I will have drainage tubes hanging out of my body for 7 days. It will be hard to update you guys, but if you follow me on FB, I will let you know that I am alive and if the surgery was successful.
Thank you for all of your loving thoughts, donations, love, prayers, and letters you all have sent. Some of you have even seen me in the hospital and spent some time with myself and Jim (Paul! Thank you). I have gotten many text messages and I read all of them and try to reply back. Thank you all for thinking of me during this time.
after I heal from surgery will be the next large step: Chemotherapy. To be continued...
I thought I would write a blog post because I am in a shitload of pain right now. Cancer is funny sometimes - some days you are asymptomatic, and other days you feel like you're dying - which is a weird choice of words but hey I don't really care right now. I know many of you have wondered how I keep such a positive attitude much of the time. Well, the truth is, I don't always have a positive attitude. I do my best to stay positive, but there are days where positivity is so incredibly difficult, and I can't do anything but cry it out (or punch it out). I try to think to myself, you know Amber, you could be a stage 4 patient which is, well, bad news. But you can't help but think in the back of your mind that you have something inside you that is trying to kill you. A bullet didn't do it, a knife, a fight - no - my body was invaded by cancer cells and it found a capillary source to supply it nutrients for growth and replication. The next logical step for something invading your body is to spread to other areas and attach itself near another capillary source (which it did in my lymph nodes). For those of you wondering, capillaries area an exchange area of nutrients to different areas of the body including organs. Okay enough about the biology lesson (sorta). I am just writing information on the fly here.
As I write this, I am in an intense amount of pain, and usually during these moments are when I feel the saddest. It reminds me that something is inside me killing me slowly. My cancer is located in a weird position, the 11:00, which makes it near my heart. Much of that is incredibly scary. I have no idea how I will feel during and after the surgery - I have no idea how I will handle Chemotherapy. Those things are incredibly scary. As much as I try to stay positive about the situation, all of this is unknown to me. It doesn't really help much that I have been alone most of my time in North Carolina except for times when I go to the gym and shop for things I need for the house. I don't know anyone here in NC that has faced similar challenges (yes, people I know they exist). I just want to survive all of this intact - physically and mentally. I know it will be a long 8 months to a year - but I want to eventually go into remission. The fear still remains: what if the cancer comes back somewhere else? I know I shouldn't think that far, and just be here right now, but that is incredibly difficult. Everyday I notice my health is slowly beginning to fail me. I am constantly tired, I have more days in pain than I do not, I am losing weight rapidly, and I have resorted to protein shakes at this point because I can't get the nutrients I need. All of these things are really starting to play into my psyche a bit.
I guess what I am trying to explain is that it is nearly impossible to stay positive everyday. There are days that you wonder about your life, and the fact is - it is hard to plan just about anything because you have no idea what the future holds for you. All you can really do is take everything one day at a time. I would be lying if I said I wasn't afraid - yes I am afraid. Everything that I know to be is changing and I am completely different from what I was, physically. I am doing my best to accept and embrace those changes, but it is incredibly difficult. So, in this blog, I wanted to be truthful to you that I don't always stay positive everyday. There are days where I am seriously struggling to maintain my own sanity. This is my own show of vulnerability to you that is legitimate. As things get closer to treatment, the more fear I feel inside of me. I go in for the double mastectomy in less than 2 weeks, and yes there is fear there. I know I will never look normal again, and I have come to terms with most of that - but I never expected to go through this type of change at 31.
I just have to continue to believe that I can do this - and put one foot in front of the other everyday.
I just thought I would write what a rollercoaster cancer can damn well be. I also wish they had darts somewhere. I do enjoy playing darts. I guess throwing things at an object can be quite cathartic.
Much love guys.