The Ups, Downs, Pros and Cons of Maintenance

It has been a very interesting couple of months (to say the least) since I last wrote in my blog. With me being in full remission and in maintenance mode, you would think that that it would be all peaches and cream. It really hasn’t been. Maintenance is a cute word for “we’re going to still kick your ass, but now you don’t stay at the hospital.” There of course have been many highlight moments. I will start with those.

The Ups:

  • I took an amazing trip with my Dad through the coast of Big Sur.
  • I surprised Brandon by visiting him in Rocklin. I saw him hit a baseball to the wall in center field for a double, swam in the river with his brother and sister and mom, and watched him run a jog-a-thon.
  • I have enjoyed restaurants again with April, and riding my new fat tire bike on the sandy beach of La Jolla.
  • I have been able to play with my hero, Brighton (sister’s baby)
  • I have hair on my head and have enjoyed a second round of puberty!
  • I have gone to the office a few times and enjoy being able to chat with people a little more again.
  • I have seen my family more and have been able to relax
  • I carved a pumpkin for Halloween and got to hang out with friends at the house.
  • I love being able to spend time with April 24-7

The Downs:

  • Getting balanced on the chemo pills and steroids is a big, frustrating challenge. I feel great one day. Then, literally the next day I have a fever, aches, and headaches that feel like a sudden zap to my brain. I can’t get off the couch because it almost feels like I’m short-circuiting. I’m fine one minute… but it is a tease, because then my body crashes.
  • I have had to go to the ER, and spent 6 days in the hospital because of a fever. When I get a fever, it is life threatening because I don’t have the immune system to fight it off. So guess what I get… More drugs.
  • Adjusting to food has been a crazy transition. An example is salad and chicken slices. I loved it in the past. But now, any of the foods I was given in the hostpital are a struggle to eat. They make me nauseous, like trying to eat in a porta-potty. Chemo (although amazing) is the most disgusting feeling mentally. You are putting poison through your body. It just feels gross. So anything connected to it is now gross. Now, certain smells and foods I associate with Chemo are no longer enjoyable.

My biggest challenge has been readjusting to society. When you’re in the hospital, you are thinking about one thing, and that is surviving. But then when you get out, there is a lot more to think about. I now have work, friends, family, and all of these other thoughts on my mind. Even good things can be overwhelming.

People often say, “Congratulations, it must be great to have this behind you. You must be excited to just live a normal life again.” I would have said the exact same thing if the tables were turned. Like I said, being in remission is a good thing. But it is not like a light switch. I can’t just go from normal to Cancer patient and back to normal. I have been so programmed over the last 9 months of things to watch out for that I tippy toe around a bit. Going into a bank is super uncomfortable. Eating at a restaurant where the tables are near each other is strange. Going to a public bathroom, shaking a person’s hand and just being around people is scary. It has gotten easier, but it will take time.

My Predicament:

If I posted all the fun things that I have done since remission started, it would look like I am back to normal. In some ways I am. But it feels like there are two of me, the sick guy and the healthy guy. They are constantly battling each other. The sick guy loves the Chemo because it is like fuel. The healthy guy also likes the treatment because it will ultimately help him defeat the sick guy. But that leaves me, my soul, caught in the middle. I hate them! I can’t wait to be done with them and say goodbye to the sick guy. I’m so ready to work out, travel, explore. I’m ready to have a cold or fever without fearing if I will wake up the next day.

My Discovery:

They say “Live Life to the Fullest.” “Live Every Day Like it is Your Last.” I remember thinking about these two phrases even before I got sick. They didn’t make total sense. I took it literally. Like, if I am to live everyday like it is my last day, then screw work. I’m going to a tropical island and am going snorkeling. But I understand the true meaning of that statement now. It is basically saying don’t take a single day for granted. You can be healthy one minute and the very next day wake up, feel a little funny, go to get a check up and find out you have a rare Cancer. Ok… maybe that is a little dramatic, but that is my story.

Appreciate something every day. Take a moment to realize how special the simplest of things are. When I walk, my feet are numb and tingly. I can’t even feel them. Are yours? My head is in a constant pressure cloud from these drugs. Is yours? Appreciate being healthy, appreciate being able to run, appreciate walking outside, looking at trees, meeting up with friends, etc.

Now we can’t stand around appreciating all day long, every second of the day, or we will be hippies twirling and dancing in a forest somewhere. To me, living every day like it is your last just means to take time out at some point in the day, step back, and smell the roses. Realize not what you wish you had, but appreciate what you do have.

“Live Life to the Fullest” to me means to cut out as much BS as possible. Get through all the bullshit that exists out there, and find what is real and meaningful in your heart. Believe me, I don’t want to ever go back to intensive Chemo in the hospital again. But the one thing that I have discovered and appreciate is how real it was. My disease was 100% real. My battle is 100% real. There was only one thing to think about and that was to survive. No BS. It was honest and didn’t beat around the bush. Now that I am in this “maintenance” mode, I see all the BS much more clearly than in the past. It sticks out like a sore thumb.

I want every decision that I make to be a good one, because it will ultimately make me feel more fulfilled as a human. I only want to associate myself with people that enhance and make my life better. I see how much we do for show. I would say we were born into the fakest generation yet. It is all about the glitz, all about living a facade. It’s a fake-it-till-you-make-it mentality. We don’t really talk to each other and don’t really listen either. Now this isn’t the case for everyone, but overall, it is what I see. I see it in business. People have 50,000 Instagram followers, yet when a picture is posted they have only 83 likes. How is this possible? Well, because they pay people on fiverr.com to add a bunch of fake friends. That is social media.

People also become “friends” with other business people, but it isn’t because they like or care about the other person. It is because they can gain from them. So there is a fake friendship established there as well. I have discovered a few of those since I have been sick. A few people I thought were friends, I didn’t hear from once, throughout my journey, at a time I didn’t have anything to offer them. This has been a big discovery. On a positive note, I also learned who my real friends are.

My main point is that “Live Life to the Fullest” isn’t about just buying a house, making connections, showing off how great you are, etc. It is discovering what truly makes you happy, who truly enhances your life (surrounding yourself with genuine people) and where you want to dedicate your precious time.

I find myself anxious to get my health back on track. I look forward to all that is ahead. I look forward to feeling more balanced mentally and physically. It continues to be a big challenge. In many ways I feel like I have come back from war. But it is all within my own body. It is strange to love your body but also be so afraid of it. I look forward to my own continued discovery of what gives my life the most meaning, and how I can make other peoples’ lives better.

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