cancer tax

The first half of March was amazing, after deciding not to get a second transplant Micah and I decided to get after that bucket list. Between treatment and appointments we were able steal some time and made it to Champagne, Paris, Cinque Terre, Rome, and the Amalfi coast. By steal I mean I just told my Oncologist’s what I was going to do and they had to be ok with it. I am sure they’re annoyed but they’ve started to get used to my surprises. And ok, cancer isn’t all bad, it can force you to move your bucket list dreams from “someday” to “today”. No one knows how much time they have but the second someone with an “MD” after their last name tells you how much time they think you have, I promise you will stop creating excuses for the big ticket bucket list items and just go for it. I have been able to sky dive, drink champagne in champagne, learn how to scuba dive in the most beautiful parts of the world, see the Mona Lisa, visit the colosseum and so much more. And there’s magic that can happen every day that’s always right in front of you. I have been able to spend more quality time with my friends and share the deeper parts of my heart with them. My friendships have grown in intimacy and vulnerability because of what I’m forced to face and there are some days I can’t do it alone. My friendships have become deeper and more meaningful to me. Traveling is cool but this is one of the greatest unexpected gifts, suffering brings people closer together. In those regards, cancer can be bittersweet and exhilarating, it’s a reminder that keeps me constantly in the present.

This outlook is easy to maintain when you have quality of life and most of your daily functions can be handled on your own. At the end of March this came to a screeching halt. The side effects of cancer had come to take it’s tax on my remission. This is something no one prepared me for, I don’t think anyone is prepared for. This has been harder on me than than the actual cancer itself. Remission comes at a cost and no one talks about it. Two days after our trip to Europe I ended up in the hospital with an infection and immediately needed surgery. I wasn’t going to say what kind it was, but then I remembered saying that I wouldn’t spare any details. So here we go, I had ass surgery. I had an abscess in my rectum that my body couldn’t heal because I have such a compromised immune system and raging GVHD in my colon. Over the next 2 ½ months I would be admitted to the hospital 3 more times-even on my birthday, like what the hell?!

At this point I was constantly in pain and lost control of my bowels at home, I went back to needing full time caretaking and I started to experience the loss of functioning in my fingers and extreme nerve pain all this stress caused me to be diagnosed with high blood pressure and then they found a clot in my neck. Everything just started to go downhill from there. With all the infections my body was trying to fight off I had NO ENERGY, I was in diapers and started to lose motor skills in my fingers. Oh, and my body decided it wanted to start menopause. I am sure I was a joy to be around with all my raging emotions from that plus the steroids. My bucket list quickly changed from traveling all over the world to just making it to the toilet without shitting myself.

But I was cancer free. Why couldn’t I be grateful? I was extremely depressed and could not pull myself out of it. Honestly, I was so miserable some days I just wanted to die. Hope is hard to find when your quality of life is stripped away.

One of the hardest parts of these last few months was that I had a trip planned for Vietnam in April that I wasn’t able to go on. But Micah was still able make it, I mean everyone needs a break from the cancer patient right? (that is another blog at another time…haha). I was in the hospital with a recent blood infection and was in no position to travel, my dreams were crushed. “Live your life” they say! But what happens when all these other illnesses get in the way? And what is shitty about this whole thing is….it’s not even the cancer, it’s the aftermath of survival. Who knew surviving the cure would be harder than the disease. Missing this trip was my tipping point, it completely broke me down. I was trying to do everything I could to live my life and I was just getting defeated over and over again. There were so many other things that I missed out on over the past several months. I was in remission but I felt like I was missing out on so much. I was grieving my former self, but I felt like I shouldn’t have anything to grieve about…I was cancer free! It was hard not to feel guiltily for not always be grateful for that.

Part of what makes this journey so hard is that when you’re fighting for your life you don’t realize how much it is going to cost you later. You’re only focus is on survival, at any cost. I have also learned that cancer isn’t just hard on me but it’s traumatic for the ones around me, the ones who chose to put themselves in my circle, cancer places a tax on them too. That’s the hardest to watch and honestly it makes me feel guilty. Even though I know none if this is my fault, it doesn’t change that I am ultimately the cause of all of it. That’s what makes it so hard to ask for help, because I am asking them to enter into an area of my life that will deeply cost them. I have worked really hard the past several years to handle cancer the best that I could because I didn’t want people to watch me struggle. But I had come to a point where I just couldn’t hide it anymore.

Micah of course has been affected by this the most. He made a career change because of my illness last year and has been a full time caretaker for over a year now. After his trip in April and getting a break from me and our situation he had a lot of self-realizations. He learned that in trying to keep all of this shit together he wasn’t being honest with me or himself anymore, he lost an important part of himself in the process. We also lost integral pieces of our marriage in trying to survive, everything just kind of came to a tipping point when he came back. We needed to a take a break from each other and assess the damage that had been done over the last several years. It was hard to admit that we needed it.

The longer I’m married the more I’ve realized that in order for us to be on the same page we have to protect each other’s autonomy. This is one of the most important things for us if we want to find a way to not just to be constantly “surviving”. My identity isn’t just “cancer patient” and his isn’t just “caretaker” we were meant for so much more in our marriage but it’s easy to slowly lose it in the chaos. If we don’t protect our personal dreams and individuality we aren’t living out our true identity and we won’t grow into the people we are meant to me. Even in survival mode we have to make sure we are feeding our souls, separately and together. Micah and I are both very different people, that is why we want each other, that is why we need each other.

I haven’t had any great epiphanies that the last few months have taught me and I don’t feel like all of this hardship has produced any internal or spiritual growth…Yet. That’s what has kept me from writing honestly. I feel like right now I’m just in this zombie mode of survival. In fact, I’m writing this from a hospital bed because I had to have another surprise stay. I have 15 different appointments with specialists just in the month of July.

I am trying to do the best I can and show up for myself in any way that promotes healing and reduces stress. I am trying to stay active through yoga and light exercise and I fight back tears almost very time I do because everything is so much harder than it used to be. I am halfway through my Masters program and have almost quit aa million times (it’s really hard to type when you can’t feel your fingers). It’s hard for me to admit that things are hard when people ask me how I’m doing. It’s almost as if I feel an obligation to pretend it’s ok. I guess I feel like if I admit that it’s hard it’s like I’m failing in some way, like it shouldn’t be that hard. My progress is slow and frustrating, it took me literally the entire month of June to learn how to do a half push-up again.

But guess what?

I have been doing one push-up everyday. And you bet your ass that eventually it will be two push-ups and hopefully I’ll get back to regular push-ups. I hate doing one measly half push-up, it feels like I’m doing nothing! I feel pathetic. But I tell myself everyday “Nothing changes, if nothing changes.” right? At the beginning of June I couldn’t even do one! Let’s be honest 30 days to do one-half push-up is pretty depressing but, progress is progress no matter how small. And it’s MY progress. Sometimes you have to restrain your ego and start small in order to get somewhere. I am giving it my all and still moving at a snails pace. The person that I compare myself most to is my my former self and I have had a hard time letting that go. There are some days I don’t even recognize myself in the mirror because of all the weight I’ve gained from the medication I need to keep me alive. But, I am still here and I am trying to focus on what I can do even if it’s small and even if it feels slow.

Maybe I have learned something, I have had to trade progress for consistency. When I used to set a goal it was about the amount of progress I made and how fast I could reach it so I could make it to the next one. But now it’s not about the amount of progress for me, it’s about consistency. It’s about showing up for myself everyday and trusting that the consistency I put in will eventually turn into progress one half push-up at a time.