I left off by telling you about the first day I found out when I was with my family. I almost feel that everything from that point has been a huge whirlwind. I had my first surgery on December 22, 2011. It was a long surgery about 10 hours I was told...of course for me it was nothing since I was under but my poor family had to wait and wait and wait...I don't know how they did it...I would have been a mess if that was me but one thing I can say about the Sceski's is that we are a rare breed and are super strong. I had a full thyroidectomy, several lymph nodes removed, my parathyroids auto transplanted into my left forearm(which are the little glands in the neck behind the thyroid that controls calcium in your blood, I never heard of them either before all of this!) Everyone is always amazed when I tell them that I have my parathyroids in my left forearm and I was truly amazed too at the things doctors can do now a days! Also due to the cancer being so extensive I had to have my one vocal cord and jugular vein sacrificed. So due to that I have a much softer voice now and I lose my voice a lot....that is one thing I think I miss a lot. I used to sing a lot and I miss being able to sing like I did..now I just sound like a offbeat karaoke singer drunk at a bar..also it really sucks when you go through a drive through and no one can hear you and all you hear is them laughing at you(true story, I was horrified at the time!) I am still soo blessed that I have the voice that I do and I am able to speak as loud as I can. I remember waking up from surgery feeling like my neck was out to the wall and I had to pee soo bad...the damn nurse just threw a bucket under me and didn't help with anything when it came to that. I also remember Mom and Dad coming in to see me and Dad telling me that I had some nice color to my face and I continued to say well the doctors put blush and makeup on me while i was under( I was still groggy from the anesthesia, but still had a sense of humor) I was in the hospital for about a week or so,I was told it would only be about 2 days but since my surgery ended up being more extensive then they hoped for, that was where I spent my Christmas. I remember the first night was rough because they didn't have the best nursing staff on that night....I felt like they didn't care and were extremely loud and obnoxious. Thankfully that was really the only night I could complain about because it got better each day. My biggest complaint when I was in the hospital was about my stupid veins..I must have went through 20 IVS because my body kept rejecting them. This was horrible...at one point the lady was poking soo much that I just started crying..they even had to try my feet at one point. I looked like I had been mobbed in the street with all the bruises that were on my body. It was crazy! So i finally got out of the hospital and stayed at home with my parents since I needed someone to be with me at all times and my husband had to work. I needed a lot of help those first few weeks. I had these stupid bags hanging off of my chest that had to be stripped everyday,(try making those a pretty accessory to match with your outfits) I needed help taking a shower, and couldn't eat solid foods so had to have thickened liquids for a little bit.. Right after New Years Day, I was feeling sick and throwing up...I got admitted into the hospital again for dehydration and an infection. Which was cleared up pretty quickly and I went home about 2 or 3 days after. Since then my life has been filled with many many hospital visits, scans and blood work...but that is part of my life now so I suppose I will embrace it. Also during this time I found out that my cancer is actually stemmed from something called MEN2A. It is a genetic mutation that I was born with, however I found out that I have a de novo gene which means I am the first one in my family to have this and am the start of it. I had signs from when I was younger starting with a back rash that the dermatologist had said was eczema. Which recently I found out it is something called cutaneous lichen amyloidosis. (say that 5 times fast) Of course who would ever think those were the beginning signs that would eventually lead to cancer...I never in my lifetime would have thought that. I feel that my parents have guilt about that but there was no way of knowing at that time that my "eczema" was really something else. So I pray for peace of mind for them all the time because they have always done nothing but the best for me and they continue to do that. I found out shortly after my surgery , They couldn't get all of the cancer and it had already Metastasized to my liver, sternum and also a few other lymph nodes. In the beginning, after finding out this news I felt like I had lost some hope...I was already in stage 4c and from everything that you hear about cancer people automatically think your pretty much dead. However, one thing I can say about my cancer is that it is a slower growing cancer and MTC stages are a bit different from other cancers. I could stay at stage 4c for many many years without the cancer progressing ...so that I was happy for. I stayed stable for over a year without any lesions. Also I should mention that for MTC, radiation and typical chemotherapy do not work due to the cancer being in the C cells. The only thing that can really "cure" you is that first initial surgery and if the cancer was confined to the thyroid which mine was not. I recently on March 7th found out that my cancer is slowly progressing. They found new lesions in my liver and my tumor markers have doubled. Thank God there are oral chemotherapy drugs that the FDA had just approved recently for MTC, before that there was absolutely nothing. So I will be starting an oral chemotherapy in a few short weeks. I am scared, but I am hopeful that it will shrink some of my tumors. I am praying that the side effects are kept to a minimum. I pray everyday for strength to continue to get through this...I have my days where I feel lost but I make it through them. I have the best support system I could ever ask for. I have the most amazing husband in my life who would bend over backwards for me just to make sure I am okay. I am blessed in many ways. I am thankful.
in the hospital after my surgery. Christmas Day 2011. |
Your posts are very inspirational! Stay Strong sista! Love you!
ReplyDeleteA thumbs up even after such a long surgery! Your so strong and amazing Kristin!! Love you!! Mom
ReplyDeleteKelli-It's because of You and the rest of the family that keeps me strong...I love you...Thank you Mom...I love you and Dad very much and Can't thank you enough for everything you have done and continue to do for Jon and I....Thank you
ReplyDelete