9/27/14 Update: Cancer, weddings, fundraisers, and trials
Since my last post, I mentioned I was checking-out of UCSF just in time for my best friend's wedding. I was ecstatic that I was able to attend, especially since he's the first out of my friends to get married and I was as the best man. If you know me, I take these roles SERIOUSLY. It's my duty to make sure everything goes right without having the newlyweds stress over anything else. The wedding went perfect! It was honesty the best wedding I been too. There was a bridesmaids catwalk while one of the grooms and yours truly performed "Sexy Back" from Justin Timberlake with the bride singing for last verse (she's a really great singer). On top of that, there were other surprises, all of friends were there, the DJ was great, and my date was great also. Oh, and I heard the Best Man speech was quite memorable. :)
The only bad thing about that night was that I was still recovering from chemo. I was very exhausted and to be honest, I didn't like how I looked.I felt like I was ruining the bridal photos. I know it's all mental, but I was just happy to even be able to part of it. I never cared really cared about my appearance before being diagnosed, but when you start dropping 30-40 lbs, have your skin tone chance and have no hair, facial hair, and no eyebrows; it does start making you feel ugly. I think I'll make a post about cancer and self appearance one day .Look out for that in the future.
That night was really important for me, not only for the couple, but for personal reasons too. I honestly went above and beyond the Best Man role because in my condition, getting married might never happen. So i took this moment to vicariously live through the whole wedding process.Thank you to Toan and Ferieann for sharing your wedding with me and accepting my weird ideas for the wedding!!!
Here's a picture of the bridal party courtesy to Alfred and Emma Photography
After that lovely event, I had to focus on my next treatment. You all saw the list in my previous post and I narrowed it down to locations that provided immunotherapy trials. The standard treatments for any cancer are chemotherapy, radiation, and surgery. Immunotherapy is a new type of treatment which stimulates your immune system to fight out the cancer cells. They can even inject man-made immune system proteins to give the same effect. The most important thing is it's not toxic and doesn't have the strong side effects that the other treatments could provide.The best choices was either going back to MD Anderson in Houston or UC San Diego. MD Anderson is the #1 cancer treatment in the country, but my experience there didn't go too well. UCSD is within the top 30 facilities and it's a closer to home. I chose UCSD.
UCSD and I communicated while I was getting treatment at UCSF. We were working on a date for me to come in for a consultation and they gave me an overview of the clinical trial. After a week or so I stopped hearing from them. I sent an e-mail and received a response stating that the lady had quit and the person taking haven't even heard of me. I was then told that they will call me back to retrieve the information and call me back whenever I can start the pre-screening process.
During that waiting period I was enjoying my time being free from the hospital walls and spent time with family, catching up with friends, and getting my rest. A week or so later I noticed I still I haven't heard from UCSD. I contact my Oncologist from UCSF, to please talk to them, especially since I haven't been getting any treatment for a few weeks now. 3 hours later. I get a call from UCSD and they schedule a consultation 3 weeks. Apparently it was the earliest appointment, so I took it.
My counts were doing okay that point, but since I wasn't receiving any treatment for my leukemia, other than blood and platelets transfusions, my my white cells were abnormally getting higher. It's typical for a leukemic patient whose not showing improvement and not receiving treatment to have their white cells increase suddenly. My white counts jumped from 7k to 90k in matter of weeks, The normal range is 3k-12k. This meant my cancer was getting a lot worse.
The day after my UCSD consulation, I was put on this drug called Hydrea to help bring my white counts down, but it also brings all my counts down. Meaning my white cells and platelets will drop leading to more transfusions. I was told by my doctors that I should be hospitalized just in case because of my blood counts. My stubborn self declines because The Celebration of Life 2 was just a few days away. It's difficult for myself to miss these types of events because these are the events you life for. Sometimes you just need to take risks to be able to experience these amazing moments.
The night was amazing and full of entertainment! Kudos to the Save Ryan Team for organizing it. Thank you to everyone who attended, donated, and participated in the games.
Here are a few pictures. You can find more on my FB like page:
www.facebook.com/HelpSaveRyan
Well...shortly after the event I was hospitalized for a fever and stayed for about a week. My condition was getting worse, and I started developing these lymph nodes around my neck which made it hard for me to sleep. Still no word from UCSD, I started to doubt my decision and that maybe I should have just chosen MD Anderson. More time passes and at this point I'm getting extremely frustrated why it's taking to long.
Finally, I receive a call from them and the told that I start my pre-screening process on September 17th. Me and dad pack up and head straight over, The initial pre-screening process went well but just after 2 days I develop a fever and they find a lung infection which pushes back my clinical trial. I had to undergo a bronchoscopy to figure out what my infection was. I started treatment for my lung infection on the 22nd and so far I feel improvement. We went know for sure until my next CT scan on the 29th.
Well that's my update! I have other new to talk about about but I feel like this post has gone too long and I'm getting tired.
