Just Getting The Hang of It

Part XI

The days following were filled with different events. Carrie, the old art therapist from Millers, came to visit me during one of my visits to CHOP before T-Cells. After T-Cells in the weeks that came my dad and I went to see the Rocky statue. We ate at a Ruby Tuesdays for the first time. Which is now a tradition every time I go to Philly. I visited the different parks. We walked around the the neighborhood and went to watch a movie. When side effects kicked in I was mostly fatigued and had no appetite. I had a day where I was mentally, a little slower than usual. Well, that's what the CHOP staff said, but I don't remember it. Which is what they said would happen should I encounter some minor temporary neurological deficit disorder. There was this instance when I couldn't stop vomiting and had to go to the E.R. The vomiting got so bad that I was throwing up stomach bile and my throat was bleeding from how raw it got. Now to be completely honest I don't even remember what happened after that. I was drugged up so bad that I woke up Friday morning lost. I went in Thursday in the wee hours of the morning give or take around 2 am and I woke up Friday afternoon. I have no recollection if I was even awake later that day or if I slept until Friday. Oh well. A month after the infusion I had a bone marrow and L.P done along with some blood work. The results to the two were negative and the MRD (Minimal Residual Disease) was negative. I don't know if I've explained what an MRD is, but it is a more specific specialized test that allows us to see cancer cells that we cannot pick out with the naked eye under a microscope. I also was given a report of no B-Cells which means my T-Cells are still there doing their business. I was good. I was in remission. Cancer free. I got to go home on time to celebrate the holidays with my family. I ended up back in the hospital for respiratory distress. I was put on have high flow oxygen and moved from the oncology floor to the ICU. because of the high flow oxygen I couldn't go to the bathroom I was given a commode instead. I eventually got better and moved back to the oncology floor.

My best friend Yasmeen Anis, who I met the second time at Dream Street, came up from Florida to spend the holidays with me and my family. My family fell in love with her more than they already had her first time visit back in the summer of the year prior. I don't know if I stated this before or not, but Yasmeen is my precious cinnamon roll who must be protected from all evil in this world. I absolutely love Yasmeen. She's my tiny, but fierce warrior. Intelligent with a heart of gold. That girl doesn't have a mean bone in her body despite what life has handed to her. Out of respect for Yasmeen I won't be too privy with details, but she was diagnosed with a blood disorder called Thalassemia. It's a disorder where the body isn't producing enough hemoglobin which is a protein in red blood cells that carry oxygen. There is no cure and life expectancy isn't very high though there are a few who pass the expectancy. Yasmeen is one of them and I pray everyday that she continues to. Yasmeen despite the real crappy cards she was dealt with in this life she continues to move forwards following her dreams, not letting anything stop her. She's a constant reminder that God gave us two good legs that we should use to move forward in life one step at a time, to live, and if that isn't beautiful then I don't know what is. She is an inspiration and I know she's gonna change the world one person at a time. I know this because she changed mine.

Here is where I have to explain that when we were told we got into the trials Philadelphia it was only explained to us that we would be going twice. Once to collect T-Cells and once to inffuse T-Cells. Imagine our surprise when it was explained to us that we per trial regulations had to come back every 3 months for a year to do a bone marrow and L.P, then every 3 months the second year for a check up and blood work, then in the 3rd year every 4-6 months or so. Back to fundraising we went.

In January 2018 I had my 3 month check up and I went back to Philadelphia with my little sister Susana. She had just turned 21 and I thought getting out for a bit to experience a different place would be good for her. We ended up having a really good time. I took her to eat a Ruby Tuesdays and it was overall a blast to have some time with my sister like that. Away from everything that was burdening her at home.

Coming home I had a couple of complications. Nothing too serious. I ended up in the hospital for the Flu, Sinusitis and RSV (Respiratory System Virus) all at one time. I also got another ear infection, but nothing close to as bad as what I had before. On the lighter side of things My fiance and I got the ball rolling on our wedding for this year. At the end of January we had our engagement photos taken. I loved every single photo. A big thank you goes to our photographer that day, Natalie Baidiuk. You can check out her work at nataliebaidi.com.

As of now I have a routine that consists of once a week labs and platelet transfusions, once a month doctor visit and IVIG at the end of each month. In April 2018, before I went back to Philadelphia for my 6 month post T-Cell check up, I got to attend Dream Street at Canyon Ranch once again. Only, this time it was different. It was a camp they just started to experiment with for other who already have been to camp before. For many it was a second chance to say what they couldn't before. For others a chance to talk about new issues that had occurred during the last few years or months since they attended. Dream Street takes place at the Canyon Ranch Resort and Spa in Tucson, Arizona. This new camp took place in the Canyon Ranch Resort and Spa in Lenox, Massachusetts. The staff at Canyon Ranch in Tucson and as well as Lenox were fantastic. Shout out to Tom Owen the chef who was always providing us with memorable food.

After such an incredible week seeing an old face while making new friends, I went back to Philadelphia with my mom in tow. Everything was good. LP and bone marrow were negative and MRD came back negative as well. Blood work showed no B-Cells meaning my T-Cells are still there doing their business.