After 6 weeks in the hospital, they finally sent me home. My white counts are safe enough to not be isolated, but I’m still taking precautions especially with the flu going around. The chemo I received was strong, but I handled it well. I probably felt nauseous once or twice, only lost a few pounds, and I felt I could have stayed longer if needed. I guess I’m just getting used to it; and I was also more prepared for the side effects this time around. After 2 years of this, you eventually somewhat become a pro at it.
Unfortunately, no matter how hard you prepare and how great you handle the chemo; the cancer can still get worse and that’s what happened. I received my bone marrow biopsy results yesterday and the blasts jumped up from 30% to 70%. The other reason why they sent me home is because they currently don’t know what to do and thought it would be for the best that I go home to get my mind right while they figure out what the next step would be.
They’re hoping they can find a possible solution by next Friday. I have a group of oncologists from 3 different hospitals tying to figure out another type of chemo that would work, and they’re also checking with other centers in the country.
As of right now, I don’t really know what else to say. I’m still trying to take it all in. I just thought I’d keep you all updated.
First off, I apologize for taking forever to respond, I actually do not check my blog often and didn’t notice this until now.
I don’t even know where to start…It’s easy to say to “remain positive and hope for the best!” In actuality, its going to be hard…really hard. There’s going to be moments when you feel like you can’t even move forward anymore because you’ve been beat down and trampled on by cancer. Then when you gather all your energy and find the strength to stand-up and move forward, you’re going to get knocked down again.
There’s going to be a time when you’re going to want to give up and quit because you’ve just gone through much physically, mentally, emotionally, spiritually, and financially.
BUT that’s when it’s up to you if you want to stand-up and move forward again. Everyone’s different, every cancer is different, and its really up to you whether you give up or not. You have to find your own motivation and your own reason to want to live. For me, it was my family, friends, and everyone I loved. There was no way I was ever going to hurt them and have them go through me dying. Even though I feel it’s out of my hands, because I’ve seen so many people stronger than I am who eventually passed. But when it’s your time to go at least you’ll know you didn’t go out without a fight.
AND I PROMISE YOU..if you decide to move forward and beat it..you’ll see the world in a whole different way. A way that most people would never see. Because you’ve seen the worse, you’ll start seeing all the good and beauty in everything. I mean, how can you truly say you’re happy if you’ve never been sad, or even truly loved if you’ve never hated? After all the sadness, hatred, and ugliness…you’ll start feeling true happiness, love, and see the beauty in everything. You’ll appreciate life in ways you cant even imagine. I know it’s a hell of a price to pay, but you’re already in it, so why not make the best of out it? But then again, that’s up you.
After 3 months and two rounds of mild chemotherapy, my results from my bone marrow biopsy came in. Back in late August they found 2% blasts in my bone marrow, now it jumped up to 30%. What does that mean? I’m not sure..could be a lot of things. For sure, it shows that its a lot stronger than the last time I had leukemia because it seems to be resistant to the mild chemo which helped me get into remission the last time. Also, a 28% jump in 3 months is A LOT.
The plan is for me to go take a larger dose of chemo, which means I need to check back in the hospital and stay for at least a month. I’m definitely not looking forward to live in a hospital room again, especially during the holidays, but waiting longer to get treatment would just increase my blasts.
Assuming I get into remission, I’m looking at another cord blood /bone marrow transplant, which means I’ll be flying back to Seattle and staying there for another 3 months (one month in the hospital).
Before all that, I’ll need to visit my Oncologist next week and they’ll run tests to see how my heart, kidney, liver functions are. Going trough 8 rounds of chemo, full body radiation, and a cord blood transplant takes a lot of damage on the body, and these tests will show if I can physically handle another round of chemo.
A couple positives:
- It sucks that I have to go through all this again, but at least I have an idea what to expect. It’s like passing the hardest level in a video game and having to play it again, but this time you know which items to take and know what to do or not to do.
- Transplant was by far the worst thing I’ve ever gone through and I do not want to go through that again. However, Seattle has been a second home for me and I’m looking forward to spending time with my family there. Shout out to Seattle!…except this Sunday when they play the Niners lol
- Spending Christmas in a hospital room is not ideal, but I’ve also spent 28 Christmases at home, so this year is going to be extra special…
- I am worried how my body will handle another round of strong chemo, but mentally, I’ll be ready. Right now I’m taking it all in, but I know when I officially check-in and enter that hospital room, I’ll be fully-focused and will be ready for the worse and adjust to it.
I had a few more things to say, but my chemo brain is kicking in and can no longer focus. I’ll try to keep you all updated as much as I can, especially since I’ll have more time in my hands now. Thank you again to everyone that’s been supporting these past 2 years! All those kind words really do help and I’m looking forward to see ya’ll again when I get out!
As some of you know I went back to Seattle last week for my one year follow-up. I had a couple skin biopsies done to check me for GVHD, had 12 vials of blood drawn, a pulmonary test to check my lungs, a couple x-rays, and another bone marrow biopsy. All of my results came out great except for one..my bone marrow biopsy. They found 2% blasts in my bone marrow, which means I’ve relapsed; my Leukemia is back…
I’ll need to go through 2 rounds of chemo for the next 2 months and get another biopsy done to see if it goes away or if it’s gotten worse. There’s also a good possibility that I’ll need to undergo another transplant. I didn’t find a bone marrow match last year, but was thankful that I found a cord blood match for a cord blood transplant. Unfortunately, since I used up those matches, statistically I have a very low chance that I will find another match whether is cord blood or bone marrow. My oncologists are currently searching for matches, which can take up to 3 months. Until then I can only hope the chemo will keep it low or make it go away.
I always knew that I could relapse, so I prepared myself for it. It still sucks, and I hate that my family and friends have to go through this again, but I’m thankful that they found it early this time. Most Leukemia patients would hope for 2% blast and never get that low. Granted I was at 0 for almost a year, but at least it wasn’t at 70% like when I first found out.
As far as the event goes on Saturday, we’re still definitely moving forward with it. Even more so now. It wasn’t a full one year recovery, but we’re still celebrating life! I’m still alive! You’re still alive! I’ll still be on that stage greeting everyone and thanking everyone for being there for me the past year. If cancer wants another fight then I’m stepping in the ring again. By no means was it easy, but I’m more prepared for it this time. I will knock this motherf***er out!
I can’t do it all by myself though. That’s why I need you all to please register to be a possible match for the thousands of patients who need it.I know it seems scary, and I know a lot of you don’t want to do it because you don’t know anyone personally who needs it..but you all know me now. It’s not officially yet, but I can very much be on that list 2 months from now. I don’t want to wait until then for everyone to start registering, we need to start doing that now.
It’s been a rough week, but I’m still excited to see you all this Saturday! I’ll do my best to keep you all updated..but I have another fight to prepare for.
There are hundreds of songs about cancer but here are my personal favorites in no order. Enjoy!
1) Jason Mraz- The Remedy
This song was released back in 2005 and is dedicated to Jason Mraz’s friend who was diagnosed with cancer 10 years ago. I remember listening to this song because of the melody and lyrics, but never understood the meaning of it until recently. It’s definitely one of the more upbeat songs about cancer.
2) Taylor Swift- Ronan
Taylor Swift performed “Ronan” earlier this year at the Stand Up to Cancer Teleton. It’s about a 3 year-old boy named Ronan who passed away in 2011.
3) My Chemical Romance- Cancer / My Chemical Romance- Welcome to the Black Parade
My Chemical Romance’s 2005 album Welcome to the Black Parade is about a character named “the patient” that dies and reminisces back on his life, which also parallels the theme of cancer. I thought it deserved 2 songs from the album. “Cancer” still gets to me everytime. Here’s a quote from the lead singer Gerard Way regarding “Cancer”
"It’s very direct, very brutal, but that’s the way disease is. Obviously cancer is being used as a metaphor.
“But I also wanted the song to be directly about the disease, because it’s something that the patient has gone through and it’s a very powerful thing. For me it was almost like an attempt to write the darkest song ever, and I think we achieved that.”
4) Simple Plan- Save You
"Save You" is about Pierre Bouvier’s brother’s battle with cancer.
"It’s about my brother, he went through a two year battle with cancer and he went through numerous chemotherapy sessions and went through a bone marrow transplant and it was really tough time for my family and I. Just going through that and seeing someone so close to you go through that kind of stuff is very difficult. The song is about how I felt powerless in that whole situation. Now he’s better, which is great news, but that is probably the song that I feel most connected to."
5) Martina McBride- I’m Going to Love You Through It
The song is mainly focused on breast cancer, but the video includes various cancer survivors as well as celebrities who have experienced cancer personally and/or through family. This is easily one of my favorite songs about cancer because it captures the importance of having someone there for your physically, emotionally, and mentally during your battle with cancer.
6) Rascall Flatts- Skin (Sarabeth)
When people think of cancer, I believe most people picture a middle-aged or elderly person. However, cancer affects all ages, and “Skin” focuses on a young girl who was diagnosed during high school.
7) Regina Spektor- Chemo Limo / Regina Spektor- Sampson
Regina Spektor has a lot of dark undertones in her music which makes it difficult to interpret the true meanings behind her lyrics. Chemo Limo seems to be about a mother of four and her reaction and decisions regarding her bring diagnosed with cancer and needing to undergo chemotherapy. Sampson seems to be a woman singing about a man going through cancer which is also parallels the biblical story about Sampson.
“I don’t fully understand the fascination of people wanting to know the ‘real’ you after listening to your songs,” she said. “People always want to know which part of the song really happened, they want to know some sort of a ‘Truth’.
8) Tim McGraw- Live Like You Were Dying
This song perfectly captures the realization of fulfilling your life after finding out you might not have enough time. It’s also accepting your condition and finding peace within yourself. “Live each day like your last” gets tossed around a lot, but people do not fully understand those words until death becomes reality.
9) David Tokaji- I’ll be the Father Now
This song is dedicated to David Tokaji’s father who was dying of cancer in 2010. His lyrics says it all.
10) Sufjan Stevens-Casimir Pulaski Day
Casmir Pulaski Day is a holiday that is celebrated the first week of March in Chicago. This song is about a boy who, that day, reminisces about his lover who passed away because of bone cancer. Its also about losing his faith because of this experience.