Kristi's Medical Fund
Kristi was diagnosed with epitheliod sarcoma on April 15th of this year. It all started with numbness in her right pinky toe and when she brought this to the attention of her doctor nothing was done and it didn't seem to be a concern to anyone else. Between 2011-2014, the numbness progressed to about half of her right foot and she started to experience pain, which was often times very intense. The pain seemed to be worse at night, which caused her to have issues sleeping. The issue was brought to the attention of her primary care physician once again, at this time she was referred to a neurologist. She visited the neurologist about 6 times. The first time she was tested for neuropathy, which was ruled out. Every visit after that she was told that it was a B-12 deficiency and was only recommended B-12 supplements, no other assistance or solutions were given. At that point, she gave up on visiting her neurologist and just coped with the numbness and pain until the summer of 2015. At this point, she noticed a lump on the inside of her right foot.
No one believed the lump to be abnormal, because there is naturally a lump on the inside of your foot. Hers however appeared to be larger than normal. Finally, she went back to her primary care physician in December of 2015 who said, "I have never seen anything like that before" and referred her to a podiatrist to be seen that same month. The podiatrist thought the cause of the pain and numbness was attributed to Tarsal Tunnel Syndrome. Tarsal Tunnel Syndrome is essentially constriction/compression of the nerves in the foot. He ordered x-rays and an MRI to see what the lump was. Once he recieved her MRI results, he stated he believed it was just a lipoma, or non-cancerous fatty tumor. He then sent her back to her neurologist to confirm his diagnosis of Tarsal Tunnel.
That same month, December 2015, she went back to the same neurologist and he informed her that it could be many different things that are causing the pain/numbness. The neurologist ordered blood work and told her to return in a month. At this point, she was upset and called her podiatrist. The podiatrist had asked her to call if she had the same sense of helplessness after visiting her neurologist once more, since she had expressed her concerns that he had never tried to help in the past. The podiatrist then informed her that there were two options for pain management: 1) medication for nerve pain, and if that didn't work they could try steroid injections to help the inflammation go down. 2) Tarsal Tunnel release surgery to decompress the nerves and have the lipoma removed. She started with the medications, which did not work and had various side effects, which led her to try the steroid injection. The injection made the pain more intense, and at times unbearable.
She met with a surgeon in the beginning of April 2016 to have the Tarsal Tunnel release surgery. The surgery was schedule for April 11, 2016. He informed her that there was a 1 in 100,000 chance the lipoma was cancerous, but he wanted to send it to pathology just in case. She received a call on April 15th and was told the prognosis was not good; it was cancer. She went and had another MRI that same day to see if the surgeon had successfully removed all of the cancer from her foot.
The following week, she had her first appointment with her oncologist after having a PET scan to see if the cancer had spread to anywhere else in her body. She was informed that the cancer had not spread; it was localized to her foot, but not all the cancer had been removed from the first surgery. The cancer had spread all throughout her foot and the oncologist told her the best option was amputation of the right foot. This was the best option, because the cancer she had (epitheliod sarcoma) was very aggressive and has a high rate of metastasis and recurrence. She was also informed that chemotherapy is not effective on that type of cancer and radiation hadn't been proven to be much more effective. However, the cancer is very rare, so the research is limited. She opted for amputation, because it seemed to offer the best chance for survival.
Her right foot was amputated on April 22, 2016. The skin did not heal correctly, so she had to go back and have revision surgery on May 13th. Due to all of the surgeries and doctor's appointments she had to miss a few months of work. After she had some time to heal, her job offered to let her work from home. In August, her insurance approved her prosthetic and she was fitted in September. She was supposed to get to take the prosthetic home in September, but she received a letter from her insurance that the prosthetic was not deemed medically necessary and would not be covered by them due to it not being the most basic model. The prosthetic that had been picked out, had been recommended by her prosthetist as being the best option for her.
She is currently awaiting a response from the insurance to the appeal of the denial of coverage. Along with all the physical struggles she has had to face, she has been struggling with depression. She is now unable to work at the moment. On top of not being able to work and facing issues with the insurance company, she still has to pay rent, bills, car insurance and car payments.
She will be visiting the MD Anderson soft tissue sarcoma center in Houston, TX. With those trips comes extra costs and concerns of how to take care of current costs. Any funds donated will go to bills, car payments, trips to MD Anderson, thousands owed for medical bills or toward getting her prosthetic.
Once again, thanks for reading. And anything and everything is appreciated by Kristi and her loved ones. If you aren't able to donate, please spread the word.
I just wanted to take the time thank you all for donating and sharing the gofundme. Your support and kind wishes are very much appreciated! You are all helping more than you know and I will never be able to thank you enough. Just to keep everyone updated on what's been going on; Kristi has been doing really well, but of course there are obstacles that pop up every now and then. She just had to spend an unexpected $300 to get her car fixed. She is still in need of help reaching her financial goal, but as always, sharing is caring and helps as well! Anything and everything you all do is appreciated, so thank you once again!!
It came as a surprise to me that I would have to fight tooth and nail to even get approved for a disability, despite the fact that just looking at me you can see I'm missing my damn foot. Who knows how long it will take for that to be approved, if ever.
What I'm saying is life is not fair and I'm kind of tired of it. I didn't ask for any of this to happen to me. I would understand things being so hard if I had chosen to have my foot amputated. (I guess I kind of did choose it, but it was literally my foot or my life.) I don't know why there aren't better resources for disabled people in the US. I hope I'm just missing something because it seems ridiculous that you have to jump through hoops (with one foot lol) to make ends meet after dealing with something so debilitating. I know I make light of my situation and that's my way of handling everything. But the constant fear of the cancer returning is very real. Every upcoming scan brings more and more anxiety. Not to mention the immense stress of my massive medical bills that I haven't even been able to start paying on.
I know that there are grants out there, but I've had a hard time finding any I qualify for.
Hey Kristi! I recognize my own journey with synovial sarcoma in your story. I love your photos! When I told my PCP about numbness in my foot, she told me it was probably my bike seat. I'm glad you found MD Anderson.
Jacob Boudreau, I worked in histopathology for 33 years in three different countries, and I can assure you that if people wanted their body parts back, we were obliged to comply. The last thing I returned to a patient, just a few years ago, was a whole leg. I can't believe you have the nerve to be sceptical. Have a look at Kristi's Instagram photos.
Sorry, I'm not able to donate, as Im in a similar situation with being disabled... I have chronic joint infections following a total knee replacement almost 9 years ago. My latest infection was in August and they removed the knee components out and put a rod in that keeps my leg straight all of the time. I would suggest, if it's at all possible to get a disability lawyer to file your case... it increases odds of approval and they take their fee out of your back pay. It was just over $3k in my case, and I had approval within 6 months. I wish you luck and continued good health. Ira
Oops, sorry, this is the right one: https://www.facebook.com/groups/1923836781170483/
Hope this helps :) https://www.facebook.com/groups/1923836781170483/pending/
Sorry I can't donate but just want to say you are awesome and hope everything in you life works out for you god bless you.