I have been through many ups and downs in the course of my fight. I was diagnosed in August of 2009, after months of stomach pain. Who would have thought at age 24, almost 25, that I would be presented with the diagnosis of "stage IV incurable cancer". However, if anyone can be blessed with cancer, I have been. Thankfully, epithelioid hemangioendothelioma is often called a "lazy" cancer, and in me, has not grown since the end of 2011. However, previous to that, I had been on 4 different types of chemos, and experienced about every possible symptom from chemo that one hears about. My hair turned white from a drug called sutent, my skin turned yellow, and I lost my entire taste for salt. Now, I am not your typical female who likes dessert. I like chips, crackers, pretzels - the salty side. So to lose your taste of anything salty was horrifying. One of my breaking points that I can remember was when my dad had so nicely brought me a Wegmans turkey sub, and I sat there crying, with tears running down my face, and eating, but not being able to taste. My hair changed back to its natural almost-black color after we stopped the sutent, so I ended up with a skunk stripe, only mine was horizontal across my head. I went to the hairdresser and everyone came over to look, because they had never seen anything like that before!
I was a liver transplant candidate, and got a call on St. Patrick's Day in 2010. I went in, they knocked me out for the surgery, and I woke up stapled back together - but everyone was crying. I cried too, the first day, when the wonderful transplant doctors came in and told me that they weren't able to complete the transplant, because they had found microscopic cancer cells outside the liver that did not show up on the scans. They thought that if they transplanted the new liver, and I was put on all the anti-rejection drugs, that I would end up in the same position as I was already in, with cancer in my liver, and then I'd also have a supressed immune system.
I was also on intron A, which I had to inject into my stomach, and I never could get used to that. Then came the combination chemo of adriamycin and avastin. I lost all my hair, got a wig, wore it for a few months...and then managed to land in the hospital with virtually NO immune system and a couple of serious infections, in December of 2010. We stopped the adriamycin and continued on with the avastin...until I ended up with internal bleeding, and another stay in the hospital in December of 2011. I had 2 units of blood transfused, and iron injections for 4 months following. In there somewhere, I started developing severe ascities, which lead to me needing a paracentesis (essentially a draining of anywhere from 2L up to a max of about 6L of fluid out of my abdomen) about every two weeks. I had 40 of those (literally) before a shunt was put into my portal vein to try to help the matter in September 2012. It was working great, until it collapsed about 3 weeks later. Back I went into the hospital in October, where a shunt was placed inside the original one. I thought I was going to be doing pretty well after that...until the umibilical hernia that I had had for around a year started to act up in December. It happened back in September of 2011, and had stayed roughly the same size for about a year. Then it started getting larger and larger...and eventually wouldn't be reduced by January. I had surgery to repair that mid-January 2013, and I am about as well put back together as I have been since being diagnosed, so the fact that I will be able to walk 5 miles is a HUGE achievement for me!
The Warrior Walk will be a fun-filled event for cancer survivors to connect with one another and share in celebration with their friends, family and caregivers. Today, there are more than 12 million cancer survivors in the United States, a number that increases every day. These survivors deserve to have the fullest, healthiest possible life after their cancer care yet face many ongoing health challenges. The effects of cancer treatment can be far-reaching, and dependent upon many factors, including the type and progression of the disease, length of treatment, and the ever-evolving drugs and therapies used.
Please join us on June 2, National Cancer Survivor's Day, as hundreds will come together to support Judy's Fund at the James P. Wilmot Cancer Center at the University of Rochester Medical Center. http://warriorwalk.urmc.edu