Yesterday was a crazy crossroad in this journey. I had a full-body exam. I had a CAT scan, PET scan, and blood work to determine the success of 8 months of treatment. At 9:00 am, I went into the doctor’s office and sat down. I was there alone (by choice). I wanted to accept my fate, no matter which direction it took, and come to terms with it. I sat there for about 20 minutes. When you are waiting to hear whether you still have Cancer, 20 minutes feels like a lifetime.
If the tests say yes, it means I have a very resilient Cancer that will most likely come back. I will have to try even more drastic treatment methods. It means the odds of needing a transplant are high. Scary stuff.
If the tests say no, the treatment worked. The odds of my Cancer being gone and staying gone are quite high. I will still be facing two more years of treatment, but it will all be outpatient. I will never have to stay in the hospital ever again. I will be able to resume social activity, eat at restaurants, travel, etc. I will still need to be cautious, but will no longer be the fragile bubble boy that I have been.
The doc asked if I was nervous, and I just laughed. I bet you’re waiting for the results. It is nerve-wracking, right? HA.
At 9:00am yesterday, I was told that my CAT scans and PET scans show that I am in COMPLETE REMISSION. There is NO evidence of Cancer. Holy crap. I can’t scream this loud enough…. There is NO evidence of Cancer!!! I took the biggest and happiest breath of my life.
I immediately called my wife and family, and told them the great news. Then I called my son Brandon. “Guess what?,” I asked him. “They looked through my body and can’t find any Cancer.” All he did was laugh and laugh and laugh. I should have recorded it. It was an 11 year old boy, my boy, experiencing pure joy with me. He asked again, “So they don’t see anything?” I said “Nope,” trying to keep from completely losing it… and then he laughed some more and said, “Well, that’s good. Now you can come to my baseball games.”
This is really one of my happiest moments. Yes, I have a long journey ahead. I am at the hospital now, and just had a bunch of painful procedures, including getting Chemo through my spine. I have two years of treatment remaining. I will be taking Chemo pills every day. My body has to keep fighting. But knowing that it is all working, everything hurts a lot less.
I want to thank everyone that has been supporting me. I want to thank everyone for making me feel so loved. Thank you to my family and friends. I really am alive because of all of you. You all gave me so much strength. A major hurdle has been achieved, and I am grateful to have passed through it.
You know the famous saying: “So Aaron, you just beat Cancer, what are you going to do now??” Well… I’m not going to Disneyland. Instead, I’m just going to the taco shop to get a California burrito. That sounds pretty good right about now :)
PS: If you’d like to post a comment, please feel free to visit the comments section on the site. I will make sure to give it a read. Have a happy and healthy day!
Today I am on my 8th day in the hospital. It has been very difficult for me this round. But let’s first start off with the fun stuff.
I had my son Brandon in San Diego for 32 amazing days. He is the best medicine :) Fortunately, we timed everything just right, and I was only in the hospital for six of those days.
When I got out, I felt surprisingly healthy. I went to the beach, swam in a pool, took bike rides, threw a frisbee, and played catch pretty much every day. I also learned Minecraft, thanks to Brandon. I remember trying to teach my parents Mario Bros, and they were clueless. They just couldn’t pick it up. That is how I felt trying to learn his game. I guess each generation will get more and more confused by the games our kids play.
It felt nice to feel pretty normal. When I say ‘pretty normal’, I mean far from normal, but not in any pain. More energy.
Now I’m back in. This round is called 3B. It takes place over two phases. You go in for 4-5 days, and then out for a week. Then back in again. They give you chemo for 36 hours, and then special fluids to rescue you from the chemo effects. Your levels have to get down to .1.
The last round, my levels dropped to the desired range within two days. This round, however, my kidneys have suffered injuries. Basically, they got their kidney butts kicked. So my levels have not been able to recover at the same speed. I’m stuck. It is now Day 8, and I am still here.
I think it is always important to stay as positive as possible. That is the best way to heal. But everyone has a breaking point. I will fully admit that this round broke me a bit. This round, this final round, has been brutal. It is like a tease. You will see pictures of me at the beach and think, “Wow, looks like he is getting better!” And I am. But then, the second I go back on chemo, I go right back to where I was physically. I feel so weak right now, like an old man.
This round, I have experienced things that I hadn’t really gone through in all the previous rounds, like post-traumatic stress. I have felt anxious, depressed, frustrated, angry, and, negative. These are all words that I would definitely never use to describe me. Actually I am the exact opposite. But you reach a point, (and I believe this exists in every human), where you just can’t take it. You feel defeated. I had moments of this for the first time in my life, and I couldn’t escape it. So yesterday I just embraced it. I cried a bit, then cried some more, and then a little more after that. I couldn’t help it. But after that, I felt a little better.
Now, I believe there are two ways to recover. 99% of the time I am going to keep it positive. I think it ultimately helps the healing process much quicker. But 1% of the time, If I need to, I will allow myself to crawl in a ball and have a little pity party. It mentally released a lot of frustration, and I am feeling better today.
This isn’t easy. It is not the same as feeling tired and waiting to have energy again. There is no feeling like this. Your body just takes a beating. It really is a war.
The good news is that this is my final round of in-patient treatment. Assuming my Pet scan checks out well, I will not have to stay at the hospital anymore. When I go in for chemo, I will be able to leave afterwards. I will also be taking chemo pills/steroids at my own house. It will still be tiring, but there really is no place like home. I wish I could click my heels and be there now. So I am in a waiting game until my numbers improve and my Kidneys repair themselves.
So back to the good news/fantasy. I am hopeful that the doctors clear me to go home tomorrow. I am optimistic that my Pet Scan will be clear, meaning that Cancer can no longer be detected. Then, I begin my two years of maintenance. During this time, I will grow my hair back, start working out more, take a trip with April to see the fall leaves, visit Brandon, work a couple of days a week at the studio, hang out with my new nephew, enjoy my family and friends, throw on the baseball uniform and play first base and bunt, ride my scooter, go to the beach, eat at restaurants, go to the All Star Game, and just enjoy my body getting healthier every day.
I don’t think these are crazy dreams. I look forward to seeing them come true very soon.
I wanted to share this video of my speech from The Love Benefit event on June 2, 2015. The event was dreamed up by my friends and colleagues in the wedding industry, who went all out, and put together an amazing evening. Since I couldn’t be there myself, having come off an intense chemo round, I was asked to prepare a video. I figured I’d surprise everyone and show up instead :) NOTE: I mention in the video modern humans existing 200 years, meant to say 200,000 years.
It has been a while since I wrote on my blog. Call it writer’s block. Or just blocking out writing. Or thinking so much.
At this point, I understand what it takes to get through each new round of chemo. But I am at the beginning of what will be my biggest round. So far, it has been four very intense days. This one will last for 3-4 weeks, and I will remain in the hospital the entire time. I will admit that physically, I am a bit spent.
For example, in the past 48 hrs, I have had: 2 blood transfusions, 2 rounds of chemo, 4 bags of potassium, 2 bags of magnesium, steroids in my eyes, laxatives, Acyclovere, Mepron (which is like paint that you swallow), Lasix (to pee), and a gallon of fluid which made me gain 14 pounds of fluid (I looked like a puffer fish). On top of that, I have shared a room (which is ridiculous). When sharing a room, you don’t sleep, because the other patient’s lights go on and off, and their iv beeps throughout the night. So it has been an adventure. As I write this blog post, I am sitting in a hallway, waiting for my own room. It is 12:15 am.
This process wipes out my body, but I am proud to say it still has not broken my spirit even one percent. I am optimistic. I love the feeling of accomplishing each round. After this, there will be one more intense round next month. Then, assuming all stays on track, I transition to maintenance, which is much easier on the body. About half as intense. The doctors said that my body has handled the treatment very well. They said it has responded quicker than most, so that is good.
I feel strongly that my next chapter will be a happy story of survival, and that I will be looking back on this someday with a new celebration of life and all that it has to offer. I am so motivated to get through this, do amazing things with my life, and make a positive impact on the lives surrounding me.
Well my fingers were crossed last week for my numbers to go up, and the next day they did! I have been in the hospital since Tuesday and was finally able to receive the Chemo that I need. I call this round the Pee Pee round. It is a nonstop pee fest. They give me a chemo that requires a ton of hydration, so that it doesn’t crystallize in my stomach. So I received chemo for thirty-six straight hours and then fluids to help rescue me from the chemo.
With this, it means that about every 40 minutes or so I have to pee. But not the normal version. It goes instantly from zero to, wow I have been sitting in a car for 3 hours and have to go really bad. This gets pretty tiring as I have to go day and night. So I am tired from that, as well as the effects of the chemo.
The goal is clear all of the chemo out. From a numbers perspective I have to get the methotrexate levels (chemo) down to .1. Yesterday I was at 7.0. So there is still a hill to climb to get there, before they release me from the hospital.
Overall I feel ok. I am really bloated from all of the fluids, so I have a nice puffy face, like a puffer fish. But it is better than my old look, like Skeletor, when I was way too thin.
The last two and a half weeks have been all about learning patience. You would think that having a break from chemo would be very nice, but it is frustrating. My chemotherapy has been delayed two and a half weeks now. I am just waiting for my numbers to go up.
Even though my mind is sharp, my body is exhausted. There is no mental effort required on this one. It is all physical. I am at the mercy of my body waking up.
In order to have treatment, my bone marrow platelets have to be at 50,000. Instead, my platelets have been hibernating at around 24,000 – 40,000. A transfusion would get me to the desired numbers. However, with this round of chemo, it is very important for my safety that my body makes natural platelets. So chemo is on hold.
This has definitely been a test of my patience. It is a bit nerve wracking. I feel like I’m in a trap. If I have chemo when my numbers are low, it is very dangerous. But with an aggressive cancer, it is not good to delay too long either.
In a weird way you find comfort in having chemo. You know you’re at least moving forward, and fighting for something. But the last chemo also kicked my butt a bit. I have experienced some nerve damage in my body, and my legs and feet are always very numb. I walk with a sort of wobble these days. Like when you are in a car for eight hours, and then get out to stretch at a gas station. The main difference is that that this feeling doesn’t go away.
The doc said this kind of nerve damage is usually reversible over time. I of course naturally focused on the word usually. Ha.
Every other day, I go to the hospital and get the same news. The numbers are still not where they need to be. I actually have hair growing back on my head. Naturally, you start wondering what else could also be growing back.
I am trying to take my own past advise. Focus on what is in my control and accept what isn’t. It is a tough discipline to maintain, but I do my very best. I try as hard as I can to stay focused on that philosophy. It is very important that I only have small bad moments, and not bad days.
I will fully admit that I felt a bit grumpy a couple days ago. It lasted more than a moment. I got a bit angry at Cancer, and found myself just yearning for normalcy. I found myself just wanting to go to a Padres game, maybe grab a beer and sushi before the game with my friends. But it isn’t possible. So I had to have a serious conversation with myself to get out of that phase of impossibility.
I feel better now, and have my head on straight. But again, I find myself sitting at the hospital, waiting for the results of my next blood withdrawal. This process is much more than just about dealing with pain. It is about handling reality. It is about being patient.
While writing this, I just received my results… I am now at 46,000, up from 40,000. So 4,000 to go and I will start my chemo again. Fingers crossed it will be there by Tuesday :)