miércoles, 5 de junio de 2013

My sad tale - Paraneoplastic Neurological syn. (PNS) community - RareConnect

My sad tale - Paraneoplastic Neurological syn. (PNS) community - RareConnect


My sad tale

Written by aimska, published 17 days ago.
So let's rewind to March 2011. I had just finished my divorce, life was good again. Work was good. I was single and ready to mingle. Around mid March, I felt a lump on my right breast. It was up near the top of the breast close to the armpit. It was hard, the size of an olive. I was nervous, I was only 30 years old. Could it be cancer? I doubted it. I made a quick appointment to see the doctor. The problem with these doctors is that they never have immediate appointments, so you are left there wondering what is this lump for days even weeks.
Fast forward a little more to March 27, I had a photoshoot. I wasn't officially diagnosed with the cancer yet but I knew I had a strange lump. After the photoshoot, I started having weird symptoms of vertigo and double vision. These symptoms did not go away after a few days and it was really really difficult to function. I visited my primary care doctor and he directed me to the emergency room for a CT scan of my brain. Everything from the scan was normal from what they could tell, but watching me walk in an attempted straight line, you would know everything was NOT normal.
Shortly after this emergency room trip, I was officially diagnosed with breast cancer stage 2. I remember crying my eyes out at the doctors office. I cried all the way home and I cried for hours after I got home. I could not believe this was happening to me. I decided to put my symptoms of vertigo aside while I dealt with cancer treatment. May 2011, I had a lumpectomy to remove the breast cancer. Surgery was successful. In and out the same day.
I met with an oncologist to discuss the start of chemotherapy. I was advised of the risks of the damage chemo do to my ovaries and the possibility of never producing eggs again. So I decided to do in-vitro to freeze some eggs. This went on June 2011, daily injections in the stomach and doctor visits every other day for bloodwork and sonograms. We successfully extracted 20 eggs after this process.
Now we are in July 2011 and ready to start chemotherapy. I was going to have 6 rounds of chemotherapy every 3 weeks. Chemo was okay, not enjoyable but doable. Lost my hair, that was really hard. Cried for a few more days..
Meanwhile while all of this was going on, I was still having the neurological symptoms, dizziness, not balanced, and stiff leg, double vision on right gaze, hand tremors. I was seeing multiple doctors on top of the cancer treatments. These doctors included neurologists, opthomologist, neuro opthomologist, neuro oncologists. No one could tell me what was going on and why I was having these symptoms. My symptoms were not getting worse, just pretty much staying the same.
Now we are in January 2012, chemotherapy is done and radiation has started. The neuro oncologist I was referred to ordered a spinal tap, he wanted to rule out that I had spinal cancer. I had the spinal tap done and no cancer was found in the spinal fluid. I did some research of my own online and read about paraneoplastic syndrome. I asked my doctor about it but it is so rare, that not a lot of doctors are even familiar with it. We had my spinal fluid retested for the antibodies and sure enough, it was positive. I felt so relieved. FINALLY I know what is wrong with me and I can start addressing the problem. Another issue the doctor told me was that my symptoms were so mild that it was unlikely it would be PCD as most patients are wheelchair bound.
I made an appointment to see Dr. Darnell at the Rockefeller Institute. I met him and his nurse assistant. Both were very nice. He reviewed my history and took video of my walking. He said I was very lucky. He said what he has seen, I had world's most mildest case. He said all the patients he has seen, they were in wheelchairs, could not speak, write, or eat. He had a blood test done to confirm I was positive for the antibodies, and I was. He also tells me there is no cure or treatment. I was heartbroken. On the one hand I am very lucky, on the other hand, I can't walk down stairs without feeling like I'm going to fall. I walk with a gait that makes me self conscious and unable to socialize.
I tried physical therapy, but that didn't help much. Same with acupuncture. I'm trying a different physical therapy place now. If only my walking could get better.
My story is under construction.... I'm sure I'll think of more to add.
I just passed my 2 year cancer anniversary. It's unreal. Time flew, it feels like just yesterday I got the news.

No hay comentarios:

Publicar un comentario