Just when things began to look good.. everything fell to pieces. I finally felt well enough to post again today, and I want to start off by saying that a lot of hospitals do things their own way and follow their own specific procedures. I’ve been to El Camino, MD Anderson, UCSF, and so forth, however, UCSD has such a unique process it’s actually pretty mind-blowing. I don’t want to go into too much detail because I’m not sure if I am allowed to, but let’s just say I had to give the attending doctors and nurses advice on how to help me…
I mentioned in my last post that my next CT scan will show if my infection is going away. Unfortunately, the results show that it has gotten worst. I suggested they put me back on Ambisome, the drug I was previously using. I suggested to go back to Ambisome even before they found out about my infection, but they refused to listen then. Now, after the turmoil and difficulties, they have finally put me back on Ambisome.
The biggest twist however, was my AML(Acute Myeloid Leukemia) has now turned to ALL(Acute Lymphocytic Leukemia). It doesn’t happen that often, but in my case it did. This is kind of a good thing for me because I was given every treatment for AML. Now that I have ALL, it opens me up to more treatment!
Bad news is my infection is still there. My doctor went through my biopsy results and concluded that he did not have any treatment for me and suggested hospice…HOSPICE..I mean what the fuck!
That was the turning point for me. All this time waiting and slow responses leading up to this… It was a huge disappointment. I spoke to my doctors back home right away and after 2 days I was headed back to El Camino Hospital.
I’m currently receiving treatment for my infection but we’re still waiting on UCSD to submit their results (surprise surprise). I just finished a round of chemo for my ALL and can’t officially say it’s working yet, but there are signs showing it is.
It’s been a milestone and up and down battle recently, but I am still surviving, and still fighting!
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:
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.
-Ryan (still fighting)
Commemorating Ryan’s long battle with Cancer, the Save Ryan Family would like to cordially invite you to this year’s Fundraising Event: A Celebration of Life and Love.
Ryan has become a hero and role model in the eyes of many who have heard his story. Over two years of fighting an acute leukemia and receiving various types of alternative treatment and traditional chemotherapy, Ryan’s body has been changed forever - but not his spirit.
To this day he is the same, fun loving, generous, and heart warming character that he was before he started this battle. Despite the rocky path to recovery, he continues to put others above him, and wants nothing more but to spread his message and continue to help others in his situation. He has not given up on life, and he is filled with immense love for his community.
And now, he wants to invite you all to celebrate his progress and lessons of life, and love. Join us for a night filled with laughter, dating games, and motivational speaking from the team you adore.
All funds raised and donated to this event will help Ryan fund his extensive list of medical bills. Please help spread the word and have a drink with us!
I started chemotherapy on 6/21 with UCSF. I’ve been trying to avoid chemo and tried 2 different clinical trials that was safer than chemo. Once at Md Anderson in Houston and once at UCSF. Both didn’t work, and though the “natural” way was working, it wasn’t working fast enough as the leukemia continue to spread into my bloodstream. It’s been just over 3 weeks since chemo and it’s starting to show some results. I’m finally starting to create more neutrophils, which I haven’t had in 2 months. Neutrophils are an important part of our immune system. The lower your neutrophils you have, the more susceptible you are to fighting diseases. I was in and out the hospital during May and June because I didn’t have any neutrophils. Now that I have some, I feel a little bit more safe being outside.
These past 2.5 years it seems like there’s been good news, and there’s been bad news following it. I’m starting to create healthy white cells, but there are also leukemia cells this early in my recovery. Meaning, this past chemo is not working as well as it should. I’m already aware that any approved chemo we use doesn’t have a good chance, but it did buy me more time. According to my doctors, the next logical step is to move forward to another clinical trial. Even though I handled this past chemo pretty well, I still lost a lot of weight and got physically weaker.I also have a couple infections which limit what I can do. As strong as I think I am, I don’t think i’ll be able to handle another round of chemo anytime soon. Therefore, I’ll need to choose another clinical trial.
This time, my doctor reached out to hospitals all over the country. To all my NBA fans; I’m starting to feel like Lebron or Carmello in deciding where to go. Instead of getting paid millions to choose a city, I’ll be the one paying for it, but they might be able to save my life; which costs more. It seems like which ever facility I choose, the chances are about the same of it working. I’m just mentally tired of making constant life and death decisions on a regular basis, to the point whether I should decide to stay home and just enjoy life. I’ve been fighting for 2.5 years, and 7 oh those months has been in a hospital room. I’ve Been to Seattle, Mountain View, Stanford, UCSF, and Houston. I’ve met and followed a lot of patients but I haven’t met anyone whose been as many places and has gone through so much. Actually, I did meet this woman who has done over 40 bone marrow biopsies, compared to my measly 15+ biopsies.
Even if the next trial works, I still need to go through another transplant. I think the common person has no idea how difficult transplant is. Just keep in mind, my blood original blood type was B+ and now it’s O+. Changing someone’s blood type is not easy. It takes at least a year to recover from a bone marrow transplant and the survival rate is only 50% after one year. Finding a full match raises the survival rate, therefore, it’s important that people register.
Anyways, that’s what going through my head the past 2 days since hearing the bad news. I just want everyone to know, I’m not giving up. I’m going to move forward with another clinical trial in hopes to putting me in remission to do another transplant. The issue now is where to go. Here’s a list of facilities that has a treatment option for me. While reading it, keep it mind I have to make a life or death decision on where to go.
University of Florida
San Diego, CA
I have until this weekend to make a decision. Until then, it looks like they’re going to release me pretty soon. They just need to schedule a few things with my doctor back home. I have one of my best friend’s wedding coming up next Saturday and I’m the Best man. I’m just happy that it looks like I’ll be able to make it. My doctor’s said they’ll work around date to determine when I should be released and when I should be heading to my clinical trial. I’ll keep you all updated real soon when I make a decision.
As I mentioned in my previous post, I developed a lung infection 3 weeks ago. They put me on home IV treatment in order for me to start my clinical trial at UCSF. This past Wednesday, I developed a fever during my check-up at UCSF and had to be hospilized again.
After a few days UCSF discovered I developed a cold which may sound mild to a healthy person, but it would cause fevers for someone who is neutropenic like me. The good news is they did another ct scan on my lungs and it showed that my lung infection is going away. The bad news is the clinical trail doesn’t seem like it’s working so I decided to stop the trial.
Chemotherapy seems like the best option at this stage, no matter how hard I tried to avoid it. I had an option to go back to El Camino Hospital, Stanford, or UCSF. All three has the same chemo regiment which they think could help. Initially, I wanted to go to El Camino where I’m treated like family and they know my history well. Stanford is another clinical trial but would take longer to set up. I’ve heard good things about them but I’ve never stayed at their hospital before. UCSF so far has been great. They have an awesome organic menu that compliments my diet. The staff are really on top of things and are used to treating transplant/relapse patients. It’s a bit far from home but I decided to go ahead and start my chemo with them. They can also start ASAP. They’re literally setting it up right now as I’m typing on my phone. The chemo will everyday for 5 days and I’m expected to stay here for at least 3-4 weeks. Wish me luck! And please please please register to be a bone marrow match. You can order your free home kit at http://www.aadp.org/learn/how-to-register/
I recently watched this movie based off the novel by John Green starring Shailene Woodley (very talented up and coming actress) and Ansel Elgort. I’m really hesitant when it comes to movies focusing on cancer, especially romantic drama, but I thought it captured the emotions, issues, and the need to want to be in a relationship in a 126 minute film. I haven’t read the book; I’m more like a movie going guy, but I can imagine it covering more about cancer in the book.
It’s more marketed towards teenagers, but it does cover how family and friends are affected by it too. There’s scenes of how the parents struggle emotionally knowing their child may pass away at anytime and how they can cope with the internal struggle. I suggest that parents and friends of teenage cancer patients to watch it to see a glimpse of what a teenager would go through facing a terminal disease.
I’m fortunate/unfortunate enough to be diagnosed in my late 20’s. I think if I was diagnosed during my teenage years, the way I would have handle it would be much different. During that stage, you’re just finding yourself and wanting emotional relationships more than ever. In my 20’s I’ve experienced life enough where I can say that I’ve been in love, done the things I was allowed to legally and illegally, and experienced life for my age. I’m also a ton more mature than I was when I was a teenager.
With that being said, 50/50 is a great movie to watch if you want to relate to someone going through cancer in their mid to late 20’s. This is the time when you’re trying to finally be an independent adult and transitioning to find a career and/or start a family. Both 50/50 and The Fault in Our Stars also covers how difficult it is for a person with or without cancer to be in a relationship with someone who has cancer. I think this is often overlooked. Most people are too focused on treatment and often forget that cancer patients has other things in mind other than beating cancer. I’ve heard many stories on how typically the husband is more likely to leave their wife for having cancer, specifically breast cancer. This really upsets me because you’ve taken a vow or marriage; “For richer, for poorer, in sickness and in health…til’ death to us part.” If you really mean that than you need to be there for your wife/or husband until the death. I understand to an extent if you’re in a non-marital relationship and your significant other is diagnosed and it makes you want to end the relationship, because “you didn’t sign-up for this.” However, please think twice whether you’re married or not, to leave that person for just a matter of respect. Don’t just up and leave, cheat, never say a word or make up excuses to not be with that person. I’m too lazy to site, but I read somewhere that 60% of cancer patients are more likely to beat cancer if they’re in a loving, healthy relationship than those without. Meaning in some ways you’re giving them a less chance or survival. It makes me believe in true love, when I see cancer patients in their late 60’s and up with their life partner still pushing that wheelchair, holding hands, and laughing while sitting in the clinics.
This post went longer than I initially thought, but at least I’m keeping you all updated, and I hope this shines more light to what a cancer patient goes through. I urge cancer patients, family and friends of cancer patients, or if you’re just a curious being; to watch films and read literature to be able to relate to that person to an extent. If the patient is willing, then its easier to just talk to them and ask them specific question, instead of just saying “How are you doing?” The answer to that question is usually quoting The Fault of our Stars; “You mean besides having terminal cancer? I’m alright..I guess.”
I’ve been meaning to blog more often, but it seems like just when I’m about to write about something I start to not feel well, or I’m headed to the ER, and another thing pops up making the previous event irrelevant. The last time I blogged I was getting out of the hospital and received the news that my blasts has jumped up to 70%. I decided to try a clinical trial at MD Anderson in Houston TX. The trial was a pill that’s suppose to target the leukemia with minimal side effects. It was quite the hassle of finding a place close to the Medical Center, but fortunately we found an apartment that was a mile away. We had a lot of help from contacts through AADP who lived in the area (Thank you Megan and Tim!). Rent was also paid off by all of the donations. Thank you to everyone who donated and/or bought shirts! It really helped.
It was my first clinical trial and I didn’t realize how strenuous the whole process would be. I honestly felt like a lab rat. Which is fitting because they’ve only tested it on lab rats. On top of all the EKG’s, chest scans, and countless blood draws; I had to get 3 bone marrow biopsies within a month. I already had 2 the month before, my lower hip has so many dots and scar tissue in that area that its starting to look like a tramp stamp. After 6 long weeks, the results showed that my blasts has jumped up to 94%. It was disheartening to say the least. I was away from family and friends, went through all those biopsies, and my cancer was getting worse. I felt down and needed the support I had from home. I don’t know if I’m just getting used to hearing bad news, but I was emotional for a few hours and reminded myself to move forward and focus on the positives. One big positive was I wasn’t feeling the side effects that most patients would feel with blasts that high. Most patients start feeling bone pain because their bones are being filled with healthy and unhealthy cells. My blood counts was looking good too, which meant I didn’t need as many transfusions as most patients would at that stage. We flew back to San Jose shortly thereafter to decide on the next step.
When I came back I decided to focus on an all natural ways of treating my cancer. With the help from one of my friends (what’s up Nancy!) and some research, there’s been other ways to treat leukemia from teas to watching your diet. One tea that seems to work so far is Essiac Tea. It’s not your average tea and it takes a long time to make, however, there has been many stories about it curing people with leukemia. I also started taking coenzyme Q10, which is basically a pill that promotes cell growth and protect and restore cell damage. The CoQ10 I’m taking is called coquinone 30. A lot of multi-vitamins, antioxidants, and probitiocs seem to help as well as far as how I feel physically. Most importantly is watching my diet. To all my cancer patients out there: stay away from red meat, dairy products, and sugar. I can go on all day and cite articles, but the aforementioned has been shown to increase cancer cells in the body. Another friend also introduced me to the Alkaline diet (Hay Jen!), which I’m slowly transitioning to. Ever since I started, my blasts dropped from 94% in April to 73% which where I am currently.
Now the not so good news. Even with the 21% drop, I still have a lot of cancer in my body. I’m coming in for transfusion more often, still not creating enough healthy white, blood, and platelets, and I’m learning that this cancer needs to go ASAP. Just last month I developed chills and a fever which turned septic, which meant I had an infection and it was starting to spread throughout my body. I was never one for pain medication unless it was before bone marrow biopsies, but I needed it after my stomach and my legs started to feel like they were cramping up. I was hospitalized for almost a week and temporarily needed a wheelchair. I was sent to the ER again a week later because of vomiting and fevers and stayed for 2 days. At that point, I was beginning to lose hope because I followed a lot of leukemia patients, and this is usually the trend until they eventually pass. Then last Sunday during a blood transfusion, I developed a fever again. After a few days we found out I have a fungal pneumonia in my left lung. The doctors said I didn’t catch it from the outside, but leukemics who has had cancer for this long will eventually start developing these symptoms.They also think that’s whats been causing the fevers and I was hospitalized for another week. . As you can imagine I was distraught. Things weren’t looking good at all and started to lose faith.
Until something amazing happened, and I don’t know if it was because of all those antibiotics that was running through my system all day or those high fevers, but I started seeing a lot of signs, especially in my dreams that made me feel better. I know it sounds a little crazy and it’s not something I would normally share. Sorry, I’m not going to go into any details because it’s a bit too personal, but don’t you ever feel like there’s outside forces looking after you? I felt that my grandparents who passed away a few years ago were looking after me. They showed up in my dreams and I felt their presence. I also felt a higher power trying to guide me. I don’t really want to get into religion because that can be a whole new post but needless to say, when I checked out of the hospital my faith was restored and so was the confidence that I can still beat this thing.
No matter how damaged I am checking out of that hospital, I’m still walking out of there breathing. I’ve been through so much this past 2 1/2 years and I often wonder “How am I still alive?” What’s the point of putting me and the ones I love through this ordeal if nothing good is coming out of it? But when I hear that this person and that person heard my story and they’re spreading the message that it’s important to register to donate for bone marrow, especially Filipinos; it makes my day better. My mom told me during my previous stay in the hospital that my family back home in the Philippines all gather together and pray for me. We have a huuuge family, my mom is the youngest of 9. Like most families, there’s always turmoil between family members, so its a big deal when people can put their differences aside and get along when another family member needs help. There’s a flip side to that unfortunately. I’ve noticed a lot of people who supposedly “loved me’, “got my back”, “there for me” who quietly faded away from my life; which is disappointing. I’m sure some of them just don’t know how to react to someone in my position or maybe they care about me too much to the point where they have to distance themselves from me to protect themselves emotionally. I believe that to a certain extent, but why is it that strangers and people I barely even spoke to in high school and college all of sudden popped up and giving me the support that “those” people are suppose to give me? The way I see it the real people in your life stay during real moments. A metaphor I could think of is like watching your favorite sports team. When I beat cancer the first time I had all these people cheer me on and post/share/like stuff on Facebook talking about how they support me. But when things got rough and not looking good, I started seeing less off it and started to notice the true “fans”. It’s like I’m down 20 points in the 4th quarter and I start seeing people leaving the building. I want to thank all of the ones who’s staying to watch that come back. You all know who you are! My true fans.
The big thing I learned this past hospital stay is the saying that cancer patients are “battling” cancer. I believed that for awhile, but it’s a not just a battle. It’s WAR. Fevers, septic infections, lung infections, chemotherapy, radiation, and transplants; those are battles. Battles that a lot of patients succumb to. My battle scars are the scars from the biopsies, losing weight, losing muscle strength, chemo brain, damage to my organs, difficulty to walk and eat. The list goes on. There’s been so many other patients who I felt that were stronger than me and they didn’t get even get the chance to get as far as I have been. I’m thankful for that, and I continue to fight for them too.This whole cancer is war and I’m the soldier trying to survive until the end.
Thank you for registering your family members! I’m glad to hear from people who don’t know me personally but continue to give me support and helping spread the word. It means a lot. Thank you again.