It’s been a few months since I’ve written last and it’s not for a lack of things to say because trust me I always have something to say. It has less to do with that and more to do with what to say, and wanting to keep more parts of this journey to myself, but then I think about how many people I’ve been able to reach and help because of my writing and well here I am.
Last time I wrote ‘Long Road Ahead’ I knew all the scheduled tests, chemotherapy, transplant, and 5 week California stay was coming, but what I didn’t realize was just how incredibly hard everything would be. I’m not even talking about the physical stuff although peeing in a ‘hat’ for 3 weeks so they can measure your urine every 4 hours, or eating atrocious hospital food for 20 days, or having to be covered with loads of tape just to pretend you can shower like a normal person wasn’t a walk in the park. It was absolutely nothing compared to the emotional trauma I’ve dealt with in and outside of the hospital even on day +35.
Don’t get me wrong the nurses, doctors, volunteers, social workers, etc were absolutely amazing and they did their best to make sure I was comfortable. But just how comfortable can you be in a hospital room? Not being able to feel the warm sun on your skin, or eat the food you’ve been craving for weeks, sleeping in 2-4 hour intervals because people almost always want something from you it takes a pretty heavy toll, and those are just a few examples.
So many of us ‘survivors’ seem so strong and brave on the outside. People even call us ‘inspirational’ but all any of us want so desperately is to wake up one day and not have ‘cancer’ be the first word we think of or the word ‘relapse’ or ‘refractory’ or the newest in my vocabulary ‘infertile’ I have learned more lessons about this life than my brain can handle and that’s where it gets messy. More often than not we feel the need to be more than what we are because we fought to get to this place, we were injected with poison that nurses literally put suits on to administer to us, we shave our heads and listen to people tell us ‘I could never pull off being bald’. We do all these things because we have too because what other choice do we have? We feel so much more pressure to make something out of this second chance because there are those we know or connect with that sometimes can’t or weren’t able to. We’ve seen our whole lives flash before us and know that from diagnosis day forward things will never be the same. This is now my reality, my new
normal and it will never really be over.
Honestly I waited months for the transplant to happen and in the blink of an eye I’m on day +38 which sounds great, but I still can’t find a job, I still have barely any money, I still have doctors appointments every 2 weeks, I still have to wait 2 months to find out if it even worked, I still have to deal with the fact that I’ll probably never have my own children, I will enter menopause for the third time, I still get paranoid anytime I go out in public, oh and I still have an entire year left of chemotherapy because of how quickly I relapsed the first time. I am more lost now than I ever was before. One of my Lymphomies to whom I will forever be grateful for puts it this way ‘when you go through treatment it’s as if your entire body and mind is in survival mode and you do whatever it takes to get through it, but after is when it gets really hard.’ I have never felt something so deep in my core then that statement right there. I’ve lost more than anyone can possibly imagine unless you’ve been there, and rebuilding your life every day when you are still so restricted is mentally challenging.
I have so much hope for my future, but I keep having to remind myself that I have a LONG road ahead of me and I can achieve everything I want to or I hope to but it will just take time. Just like everything else I’ve gone through it takes time. Which is a very ironic statement because when you’re struck with something as tormenting as cancer you realize just how much time we don’t have.
“Not all storms come to disrupt your life, some come to clear your path”