No one ever pretended that this was going to be easy, not even myself, but I just never could have fathomed the brutality that I've gone through. This transplant has been by far the most difficult thing I've endured in my life and I'm nowhere near the end. I've started going over discharge instructions and just do not understand how I am going to ever fit back into that world out there. For at least six months I'll still be on extreme precautions, and it can take up to a year for my body to full recover and rebuilt it's immune system.
I don't want to look at the packet of limitations anymore: no restaurants, no crowd, no events, no exposure to anywhere that there is sickness lurking, no un-Purelled babies, no walking past construction sites, no cuddling with my dog, no dusting, vaccuming, cleaning, or gardening, no public transportation, no fresh food, no berries, no fruit, no veggies, no cheeseburgers unless they're cooked to gray and oozing white liquid; no swimming in rivers or lakes (which means no kayaking), no alcohol for six months.
I have to be on constant watch and report anything as small as a pimple that pops up as it could be a sign of graft vs host disease. I have many bone marrow aspirations in my near future to check how much of my blood is Kristen's and how much is mine. I have a PET Scan in two weeks so see if there is any lymphoma hanging around and if so if it's time to unleash this new immune system after it, which means I'll also suffer the effects of it potentially eating away at my eyes, my skin, my bodily functions.
The pills will be tough. I'll be leaving with about 20 that I'll need to take multiple times a day. They've been weaning me off the IV form into the pill form over the course of this week in preparation of me going "home" to NYC's American Cancer Society Hope Lodge. Some are very large and uncoated and I am a big baby taking pills. For a few months I'll need to come into the clinic to check the therapeutic levels of the immunosuppressant tacrolimus and sirolimus drugs in my body to know how much to take each evening.
I am grateful and honored that I am now considered "engrafted" with my sister's cells meaning that all of my blood cell levels are back to normal, so her stem cells have done the job of growing and transforming into what's been needed there. However, I am disappointed in how awful I feel. I thought I'd be better by now. I have never been so tired in all my life – I'm tired all the time. I'm like a little baby that falls asleep eating, typing, even talking in mid sentence. And I am so weak. I feel that my legs have lost all of their strength and I'm so scared that I'll never get it back. That is devastating to me. I fell over in my bed the other night and I literally did not have the muscle strength to get back up. Taking a shower completely wipes me out of energy and I need to have Craig or my mom or an aid help to get me dressed. I'm doing the stupid physical therapy exercises as much as I can but there is only so much I can do in this small space that is just so conducive to healing and sleeping.
I am just about off the pain pump that had been on constant drip, which is great as I've hated being in that drugged stupor, but it's also made me realize how much it was covering. Every muscle and bone and my body is achey – much of this relates back to the five days worth of Neupogen shots I received to push my sister's new cells into my blood stream and bring my counts where they need to be. My bone marrow has been doing a tremendous amount of work.
I worry all the time about how I'll fit back into society. I worry about if I'll ever feel strong and healthy again. I worry about what opportunities will be left for me when I finish this. I worry I'll never be able to relate to anyone ever again because no one can fully understand – and I don't ever want them to. At least the doctors and nurses have seen it before and they know how awful it is and when they look at me and say: "You're doing really well," I can believe it. They can explain to me why my diarrhea is inhuman in texture and size. They can explain to me why I'm puking up foam like a rabid dog. They can explain why my face is bruised and why my vulva was 10 times its normal size for so many days. How am I going to talk to people in the outside world about that? Only those who are in this or caring for those who are in it can understand how utterly inhumane cancer treatment is and all the things that having cancer takes away from you. This is supposed to be summer filled with BBQs and firepits and the five weddings we are supposed to be at. I will not be at any. Just like I couldn't be there as maid of honor for my college roommate last year as I was in the midst of my auto stem cell transplant. It breaks my heart.
People say that they look up to me, learn from me, think of me as a hero, but I think that I'm just doing what any of us would do. I'm doing my absolute fucking best in an absolute fucking awful situation. I continue to move forward because I don't see the alternative as a viable choice. I breathe through the pain. I remain as patient as is humanly possible. I know that it's only me that can endure this and come out of this on top so that doesn't leave a lot of choices. I'm doing what I have to do to say alive. I can't give up and let myself down – not after all I've been through.
If I do have any influence on anyone, what I hope they take away is not to take their health for granted. It's to treat your body like a temple because you only have one. Don't smoke: it will kill you. Don't drink in excess. Don't abuse your organs. Don't ignore your high cholesterol or the plain facts about how bad a diet of fast food can be. Don't be a lazy piece of shit – get your body in shape, keep your lungs moving and your legs working because someday you may not be able to. You'll be amazed at the benefits that gives back to you. Carrying extra fat can be detrimental to any recovery you may have to go through as well. Wear sunscreen, always. It's not worth it. It's not worth that one month of a tan body for a death by melanoma.
I've seen it in plain face at all these cancer clinics that I've been to. I've seen people speaking through assist devices. I've seen people with no nose, no eye, carrying oxygen, with black deep unmistakable legions of skin cancer. The problem is that not enough people talk about it and it needs to be talked about. Cancer isn't only a killer. In fact, more and more people survive many types of it, but that survival comes at a huge price that will leave you forever broken. It's tough being a survivor as well: these people are warriors.
It's unfair. It's unbiased. I was healthy. I was strong. Now, do you think I'll be able to grow a baby in this ravaged body? Do you think I'll be able to fulfill the physical challenges I've wanted to in my life? Right now I can't see it, but I still believe that it will come into focus.
I'm not pretending I'm an angel and that's not my point: I drank, I smoked clove cigarettes on occasion at high school parties, I've smoked weed out of an apple. But it was always about moderation and balance. I'm all about inserting the fun and craziness in life, but that doesn't mean trashing yourself and sacrificing everything else. It means respecting yourself and finding the beauty and laughter and fun in all else that is out there. I'm not saying you have to live in fear of landing where I have. I know in my heart that it is not my, or anyone's fault, that I am in this place. What I am saying is that you need to build your body strong so that it can endure the physical tests that it no doubt will need to endure. You need to live every day with full zeal as you have no idea what news will come at you the following day. If you're not happy where you are in your life, change your attitude toward it or maybe it itself. It's that simple. Surrounding yourself with negativity will get you nowhere. You are the only one who can choose how you react to a situation.
I think back to Karin pre-cancer. What if I wasn't an athlete? What if I didn't run? What if I didn't love myself unconditionally? What if I didn't go to the gym every morning before work? What if I didn't eat a healthy diet? What if I wasn't intelligent with jobs that challenged and excited me? What if I didn't have an incredibly supportive husband? What if I didn't have parents and friends that love me unconditionally? I would never be doing as "well" as I am. Build your support system on every level and you will get over the bridges you think are impossible to pass. But most importantly you need to focus on you and getting yourself to that place of gratefulness, understanding and love.
I posted something on my Facebook page early this morning in a groggy Ambien stupor but I think it resonated so I'll share here:
If you ever think you can't do something, you can. I promise you whatever it is, with fearlessness, persistence, focus and drive you can do it. There is no room for second guessing yourself, only room for trusting in the power that is in you and will never let you down.