Patient Stories – Amber Kim

Patient Stories – Amber Kim

My name is Amber Kim. A few of you may know me by my pen name, Aliana Kim.

My background is in kinesiology and biology and hold my Bachelor’s degree in both. Currently, I am working towards my master’s degree in molecular diagnostic science and my certification as a medical lab scientist, which is really just a fancy way of saying that I will have to ability to run a lab, and run tests in regard to your health. Before my diagnosis I worked on the prevention and rehab side of medicine. Along with my degrees, I was a massage therapist for about nine years. I hold a lot of credentials and licenses, but the day I found out I had cancer, none of those things really meant much.

On May 23, 2017, at age 31, I was diagnosed with Breast Cancer. This came as quite the surprise as I lived a very healthy lifestyle all my life. I always exercised and ate healthy food, so it was at this time I realized that cancer does not discriminate. I was sick for two years prior to my diagnosis, and it took some time for cancer cells to find an energy source to replicate (capillaries near the breast being that source). I have an aggressive and rare morphology with my cancer. I was diagnosed in Las Vegas, Nevada and I knew I didn’t want to be treated there, so I came back to North Carolina after three years away and began treatment all most immediately. On July 21, 2017 I underwent a bilateral mastectomy with full reconstruction of my breasts. By far one of the most painful surgeries of my life. The healing process was not bad, which I can attribute to having two amazing surgeons. About a month or so after my mastectomy, I underwent surgery again to have my port placed. I wasn’t asleep during that procedure, and it was quite intense in that they are essentially putting a tube in my jugular vein all the way down to the superior vena cava of the heart. I will do an entire article on portacaths in that they are important if you end up with cancer (or any other disorder) and have to do several infusions, as I do.

My story deviates a bit from the norm because of my experience with chemotherapy. After my port was placed, I waited about two months before I saw my medical oncologist. I decided to go to the outpatient clinic locally because I had to do twice weekly treatments. I ended up having to have infusions of Taxol and Herceptin. From day one, I felt like I got hit by a bus. My bones felt as though they were going to break under the weight of my body. Every week I was in pain, nauseous, vomiting, exhausted, menopausal, and had unpredictable bowel movements. Things didn’t really get extremely bad until around week seven. I developed late stage peripheral neuropathy. It was and is a different sort of pain that was unbearable for me. Everyone has that issue that tests their sanity a bit, well, neuropathy was that issue for me. What should have happened at that point was to stop Taxol since I received the bulk of the medication, and it wasn’t the most important medication to be on. That didn’t happen in my case. I finished all 12 weeks of chemotherapy, going into the infusion chair twice a week. Chemotherapy was harder on me than the surgery was.

After I finished chemotherapy things were supposed to resolve, but this didn’t happen in my case. Apparently, my case isn’t quite unique either. My neuropathy got worse, and over time, it developed into something more life threatening. My nervous system was completely shot, and I ended up developing non-epileptic seizures and dystonic tremors. Once a seizure starts for me, they do not stop unless they are treated. The longer I go with untreated seizures, my chances of getting rhabdomyolysis or a heart attack increase. My medical oncologist didn’t believe a word I said – honestly no one did. We had to eventually venture out on our own to figure out what the problem was. I was receiving zero help from the healthcare establishment at that time.

With my health deteriorating, we actually stumbled by chance on ketamine therapy. While in the emergency department, my husband and I were speaking about using ketamine to curb this problem. We already knew Benadryl was a viable form of treatment, but it began to not work. Pain medication was not the answer in that we figured out it made the neuropathy and the seizures/dystonic tremors worse. The emergency department we went to actually did ketamine infusions, and on that day I had my first infusion. I felt zero pain afterwards, and that was the first time in months.

When I spoke to my previous medical oncologist about ketamine therapy, she made a lot of assumptions about me at that point. First, she tried to deny something that clearly was real, and she did everything in her power to black list me for treatment in the community I lived in. I picked up my medical records and found her statements truly appalling, and very obvious that she did not listen to a word I said. So, again, we had to venture out and find a new medical oncologist. I am still way behind on Herceptin treatments. I am still looking for a medical oncologist to finish my last phase of treatment. It truly is a fight. I am fighting for my rights as a patient, and fighting for my life. I think many medical oncologists forget that part in regard to what patients are going through. To this very day, my condition has been deemed “too complex” by medical oncologists and they have since halted treatment. In a very real sense, it feels as though the medical oncologists are holding lifesaving medication hostage from me because I am living proof that chemotherapy can have detrimental side effects if not addressed at the time symptoms start. Currently, I have officially been diagnosed with dystonic tremors and non-epileptic seizures by neurology.

Armed with the knowledge that Benadryl and ketamine stopped my seizures and neuropathy, we decided to find an infusion clinic, and that is how we found Pelican Family Medicine and Kalypso Wellness Center. We spoke to their staff, and for the first time, I felt like I was being treated like a human being. I loved Pelican so much that I switch all of my care to that clinic, and it is two and a half hours away from my home. When I walked into those doors for the first time, I was using a cane, and felt close to dying. Doing the ketamine infusions eventually made it so I didn’t have to use a cane.

Over time, my pain in my hip disappeared, my anxiety level went down, and my neuropathy was less frequent. My seizures went from weekly, to maybe once a month if none of my triggers were provoked. My life was slowly becoming my own again. My primary care manager at Pelican figured out what was happening before my neurologist did. While I am still in treatment for seizures and breast cancer, I have hope for the future, which is something that the staff at Pelican and Kalypso gave me. The road to recovery is not a straight line. You have your ups and downs, and while I still have those downs, I feel better knowing I have people on my side willing to help me no matter what. I have a primary care doctor and the team at Kalypso to advocate for me no matter what, and that is worth its weight in gold.

Essentially this is the short version of my story as of today. I know there are more cancer patients like me out there, and I want you all to know that you are not alone. Some physicians may try to deny what is happening to us, but united our voice is louder, and it is time that we are heard. A clinic like Pelican and Kalypso should be commonplace rather than a rarity.

About Amber Kim

Amber Kim has been in the healthcare field for ten years working with patients on the rehabilitation side. She has worked with a variety of patients including gunshot victims, traumatic brain injury, post-surgery rehabilitation, and surgery prevention. She was a practicing massage therapist for ten years, and has been writing for about six years, including her book “Kinesiology Taping for Rehab and Injury Prevention” under the pen name Aliana Kim. First diagnosed with Breast Cancer at the age of 31, Amber now dedicates her time fighting her condition, bringing awareness to problems in the medical field, and empowering individuals to fight for their rights as a patient.

Amber resides in North Carolina with her husband and two dogs Gordon and Marley. During her free time she enjoys exercise, reading, crafting, kayaking, and of course spending time with her family. Learn more about Amber Kim at her website