I am beginning to experience every day as a series of obstacles and opportunities. On the one hand I feel that everything before me is hard and out of reach, and on other hand I feel the possibility of improvement and a life regained if I can just put forth enough effort. Walking between the two cliffs of emotion is exhausting; I have never gone through anything like this before. I truly thought after 12 years of battling cancer there could be little left that would be new, but it seems there is always something to be learned.
The past year has been a lesson for me. I have learned to live and get around without doing things that were simply my second nature. It started in my spring semester of 2014 when I used to bound up the five flights of stairs to all my business classes without a care in the world. As the months went on, I started to realize that my legs were just not responding when I told them to go up. I had a class that was moved to a higher floor halfway through the period, and I burned with shame as I slowly made my way up the stairs and saw that I was holding an entire class back from going at even an average pace. I stopped taking the stairs, and rode the rickety elevator the rest of the semester. I tried to act normal and be the best mom and wife that I could be as I lost all my upper arm strength and could no longer lift Rorie up for a hug. I could no longer go down on my knees without having someone help me back to my feet. I couldn't reach above my head. I had trouble writing. I was losing strength and mobility every day. I couldn't move.
Doctors pronounced this "chronic GVHD" and said that it was rare, but that GVHD could impact muscles and tendons and all the other things I was having issues with. Because we knew that my cancer was back and that I was eventually going to have to pursue more treatment, it was decided to just let the GVHD be and see how things progressed. It is still the hope that this transplant will leave me GVHD free when it is all said and done. So, I learned. I figured out how to do all the things I used to do in new ways, and I made the best of my many physical limitations. Or, what I thought were many physical limitations.
I am currently trapped in a body that wants to do little more than breathe. As far as I understand it, this is due to a combination of GVHD, how long I was in the hospital, the lack of nutrition I had for awhile, and the heavy doses of steroids that I am currently on to help control the GVHD. Regardless of the causes, I am stuck with the consequences. Thankfully, some of the symptoms should get better as I get off the steroids and the GVHD goes away (such as the extreme fatigue and issues with eating), but everything I have lost I will never get back unless I rebuild it. That seems so far beyond me right now. I can't open a pill bottle, or a water bottle. I could literally spend an entire day trying with no success. I have absolutely no muscles in my hands. I can barely lift myself from a chair, and I have to be careful when I stand up that I don't lean too far forwards or I will fall and I cannot get back up. By the end of most nights, Colten just picks me up from the couch and helps me to bed because I have absolutely nothing left to give.
I do not understand how to be this person, and I feel like I should be doing more. Like every day should be easier and I should be getting stronger, and yet I feel more tired and more weak. Simple tasks such as laundry or vacuuming the house are so taxing I have to lay down afterwards to regain strength. That is ridiculous and unacceptable. When I try to stand up after sitting in a chair and my legs lock and refuse to lift I just want to scream! Why can't I make my own muscles work?! It is such a simple thing to just stand up! As I face the 18 steps that lead to our apartment every day I will myself to just race up them, and then hold back tears as I slowly grunt and pull my way up using the railings and every bit of strength I can funnel to my legs. I can't do anything inside our apartment because all the cupboards and appliances are low and if I bend too far over I lose my balance. I want my life back. I cannot be this useless lump that needs help at every turn and is incapable of truly the most basic tasks.
I think back to just over a year ago and wish I was still that person. I weighed 100 pounds more, and I was powerful. I could do anything I wanted. When we went back this past weekend to visit my sister, my little nephew ran up behind me in a store and grabbed onto my hand. He wanted me to swing him around like I always used to, his fun, awesome auntie that always played with him. Instead, the simple momentum of a 6-year-old grabbing my hand was too much and it was everything I could do not to land on him as I headed towards the floor. I felt myself hit the ground and prayed nobody was watching. I tried with everything I had to get up, but had Colten not been there I would have been stuck on the floor. My sweet nephew cried because I fell and he could not understand that it was not his fault at all. I am but a wisp of myself now, and the journey back is going to be a trial like none I have ever undergone, I know.
At my clinic visit this week I met with (yet another) new P.A., and she told me about a cancer rehabilitation program that the hospital is starting to work with that is intended for people just like me: people undergoing bone marrow transplants and suffering from GVHD. The program focuses on helping patients regain strength and mobility, as well as preventing further decline. They actually work with all cancer patients, but they have special programs for bone marrow patients. I am terrified and excited to start. We are supposed to call this next week to see if insurance and so forth will cover everything. I know that it is going to be very hard and very disheartening in so many ways, but I also know it is a chance to become who I used to be, and I want that more than anything in the world right now.
My doctors are most worried about me continuing to decline right now, particularly since I am still on the steroids. Their worries are compounding my worries, and so I feel like I need to push more and more each day, and yet I feel worse and worse each day. I was reading the pamphlet from the rehabilitation program and it stated that 75% of cancer patients who undergo major treatments are never able to fully enter the work force again, or regain what physical abilities they felt they previously had. That number was staggering to me. It went on to explain that this happens because cancer patients do not go through the necessary physical (and mental) therapy to regain what they had, and thus the importance of the program, outside support, and, especially, self-motivation. It talked about the internal battles patients must face, and the very much uphill climb that regaining life can be. It is daunting. I have truly been so blessed for so long having never faced anything like this before.
I can do so little, and it takes so much effort; I can hardly remember what it was like to be a "normal" person. To be able to chase after my daughter. Wash dishes. Bend over. Stand up. Open a water bottle. Throw my arms over my head. Sit on the floor and get back up again. Walk steadily. Go up stairs. Eat whatever I want without being sick. These things will never happen over night. I will be striving towards them for a very long time. And the journey will have (and already has had) many days that I want to just give up, that I feel there is just nothing left I can give. But I just can't accept that. I can't be imprisoned in a body that was meant to do so much more. God gave me a vessel to live through, not be trapped in. It is meant to serve me, it is meant to move, and it is going to do those things again. But I am scared. And overwhelmed. And inadequate. How will I ever have enough grit to get back to all that I lost? Well, I guess I can either find it, or stay as I am. Grit here I come.
On a strictly transplant note, things are progressing fine. My clinic visit this week went well, and I was able to leave the hospital, once again, without any transfusions or other interventions. I am still stuck on the high dose steroids until my stomach stops being such a bother about eating. It is starting to accept most foods, but not as well as the doctors would like. I was advised that maybe next week we could start to taper down my dosage, but it might be two weeks if the gut issues persist. My face is starting to swell from the lovely fat deposits that that steroids leave in your cheeks and I feel hungry all the time from the steroids as well, yet can't digest much. They also increase muscle weakness, so I am really hoping to start a taper this next week. We shall see. Otherwise, though, the GVHD seems to be under control and everything else is stable.
On such a brighter note, it has been a wonderful week. The best I have had pretty much all summer. And oh my heck, this summer is pretty much already gone! We spent the weekend with my sister's family and my mom, and we got to celebrate Christian's birthday (which he said was "the best ever!"). When we got home, my parents paid for us to go to the aquarium and celebrate my birthday and it was so much fun. Aurora had an absolute blast! The newly added shark tank was definitely everybody's favorite attraction. Then, with Aurora gone to a family reunion, Colten and I finally got to celebrate our anniversary with a movie and Joe's Crab Shack (always wanted to try it, very expensive but good for a one time visit). It was so amazing being out of the hospital and trying new things, just being a person about the world again. To top everything off, my sister's adoption of my amazing new nephew was finalized today and he is officially and forever part of our (crazy!) family. I wanted so much to be there, but I got to take everything in via speaker phone and I am just so thankful he is finally their's (our's). Tomorrow we are going to pick Aurora up and see some family at the reunion, which will just absolutely make this week for me. I am so thankful for the respite.
So. The rehabilitation journey begins. I am going to kick GVHD's butt. I have already kicked cancer's butt. I am going to become who I used to be. It won't be tomorrow. But tomorrow is a good start.