Sunday, July 5, 2015

Day +32

Well, another birthday and anniversary have come and gone. My second favorite time of year (Christmas will always be the first, of course) has passed by in a blink and I have missed it wasting away in a very tiny room hidden away around a long-forgotten corner of an old hospital. I am tired. More mentally than physically. I am finding that I have no mental fortitude left. I came to the hospital angry with myself, thinking I had somehow managed to get an infection by eating improperly washed or cooked food, or rubbing elbows with a sick stranger, but the anger gave me fuel to function. I vowed I would be out by the next day--just as soon as they got my fever under control. The doctors obviously had different plans, and my anger dissipated into disbelief and apathy as the days continued to stretch out and it became more and more apparent that I wasn't going to be leaving anytime soon, and it likely wasn't an infection that I had somehow caused.

I turned on the T.V. I only watched the television one time during my stay in 812, and once I saw that it was broken (a line ran through the middle) it drove me crazy and I opted to spend my time doing other things. The T.V. in 807 works perfectly. It is on most of the day. I don't really watch the shows on the screen, I just like the noise in the background. Sometimes it puts me to sleep, sometimes it drowns out the nurses and their lectures, and sometimes it is just a drone in the back of my mind as I stare at the walls and wish myself far away. I don't think the nurses like me anymore. I have a hard time being overly kind, or even civil, while they write "personalized care goals" for me on my white board (goals that I am supposed to set, but they feel the need to write instead due to my lack of interest) that include things like "walking around today." I still haven't walked around. I can feel my body weakening along with my resolve, and I know I am becoming the patient that I swore I would never be, the one that wastes away in a room. Yet here I sit.

I can't walk the halls. I can't be a transplant patient again. This sounds absurd and would make sense to no one but the other voices in my head because I have never stopped being a transplant patient, but putting on that stupid yellow gown, slapping on a pair of gloves and covering my face in that horrid mask to walk the same hallways I walked for 23 days is simply too much to ask. I can't bear it. I was only out of the hospital for just over a week. And it was a terrible week. And then I was back. Here. Away from my family, my home, my bed, my privacy, my everything. It was not enough time. I can't be that patient again. I can barely carry on a casual interchange with my nurses and aides (that I actually like). I find myself giving stunted answers and staring at the floor, my computer, the T.V., anywhere but their eyes, which might encourage them to continue speaking to me. I just can't be here anymore; I need to go home.

The past days have made me someone new. I don't recognize the gaunt face that stares back at me in the mirror. My cheek bones stick out too far and my eyes appear too big for my narrowing face. The all-liquid diet the GVHD in my gut requires has reduced most of my body to nothing but bone, and I cringe at my sallow skin, knobby knees, and other new angular proportions. I look like a cancer patient. A dying one. I've never really looked this way before thanks to genetics and the extra layers of padding I have always tended to carry. Regardless of the cancer treatments, I've always managed to have body to spare. It seems that I carried quite a bit of strength and motivation in those lost extra layers, as well, because I find my own thoughts to be as foreign as the body they inhabit. I cry over the smallest things. I cry in front of nurses. I cry because I can't do anything else. I feel utterly incapable of caring for myself; I hate being alone. Which is why I am writing, because Colten had to leave today--for the whole day--to finally go and pick up Aurora. And I am broken. I cried when he left. He won't be here all the time anymore. He has to be at home and be a dad again, and I will be here. Alone. Drowning. Fading.

Who is this frail woman? How is it possible that one week's time has reduced me to this? How can a decade's worth of determination and faith evaporate in days? I don't know, but I am struggling to hold on to what remains. I have never felt so...defeated. I try to pray, but hear a deadening silence I have not experienced in many years. Is He even listening? I can't finish my thoughts, but only hope He can feel my sorrow and my need, my desperation for this particular part of my trials to end. I was supposed to be going home tomorrow, but the doctor stopped in to inform me that that was a bit too optimistic due to how my gut is responding to the GVHD. He is hoping for Tuesday, perhaps Wednesday. His words fall like ash on my already sick stomach. Maybe next week. Or the week after. Maybe months. Who knows? There is nothing I or anyone here can do.

Yesterday drove me to the depths. My birthday is special. It is a victory I cherish each year. But the rest of the world doesn't care. It is something that is meaningful only to me and to my loved ones, and so I can celebrate it anytime because the rest of the world does not take any part in it. The 4th of July is different. Yes, it is my anniversary, which means nothing to the rest of America, but it is also so much more. It is my favorite holiday besides Christmas. I love my country, the men and women who fight (and fought) for it, fireworks, good food, family; I love every single thing about the 4th, and I love that all of America comes together to celebrate it. Getting fireworks every year for my anniversary is just a huge bonus. It is done once a year. There is no "do-over." My chance to celebrate it this year is over and wasted in a hospital room.

I poured over Facebook yesterday looking at pictures of people at parades and with their families. Jealousy and sadness reared their ugly heads. My favorite thing about the 4th? My absolute favorite? The memories. The general feeling of happiness that comes over me when I think about the day. My family has always gone to Idaho Falls and watched the Melaleuca Freedom Celebration. Sometimes we would go to Driggs and watch the hot air balloons, or take in a parade, but we would always end up in I.F. on the river bank (in the scorching sun) most of the day to get a good spot for the fireworks. We would play games, each junk food, sun bathe, talk, even occasionally take in a minor league baseball game when my dad got tickets from trading work at his print shop. We would bicker and banter and sometimes the day would drag on forever, but then it was finally time. The sun would set. The temperature would drop. People would stop talking and walking; my sisters and I would cuddle into our blankets. And Classy 97 would begin its patriotic soundtrack to the beautiful fireworks display cascading over the river. For 30 minutes, everything was perfect.

Not yesterday. I had some sort of reaction (possibly? Doctors still have not determined 100% what happened yet) to my blood transfusions on Friday that left me with intense lower back pain. So I spent most of the 4th in bed with an ice pack on my back, half-watching movies with Colten to try and pass the time instead of thinking of all that I was missing in the world outside. Obviously, traditions have changed a bit, but Colten and I have made it a habit to get back to Idaho Falls every year, one way or another. I really thought this year would be no different. But it was. Colten knew I was upset early on this week and talked to the nursing staff about taking me somewhere in our car to watch some fireworks, but this was not well received due to insurance liabilities, or some other such nonsense administrative staff hands out so they don't have to deal with any sticky situations. The staff knew we were upset and so concocted a plan to take us up on the roof of the hospital to watch the fireworks displays all around Salt Lake. This sounded amazing at first, but ended up being a roller coaster of emotions all week long. Some days the nurse came in and thought it looked like security would allow us to go up, other days it appeared that it was not going to be possible. Had it been our idea I would have understood the back and forth, but since it was instigated by the hospital staff I started to feel more and more bitter towards the people and the program here for proposing an idea that could not be brought to fruition. It seems to be a trend at this hospital that everyone says a different thing and no one really knows what is going on. It is a trend I am sick of in both my medical care and every other aspect of being involved here.

Anyway, we spent the day not knowing what would happen with the roof situation. The charge nurse brought us treats from our favorite restaurant, Kneaders, which I could not eat due to my stomach, but the thought was incredibly sweet. I tried to get my spirits up and appreciate the small things happening around me. Around 8:00 last night my nurse came in with the news that security would not allow us on the roof. She was quick to apologize and suggested that she take us to floor 7 where construction was taking place. It was empty for the holiday and had great windows for viewing, she assured us. By that point, I was honestly too depressed to care. I reiterated all my bad thoughts about this hospital in my own mind and tried to care what was flashing across the T.V. screen. About half an hour later, my nurse and two new faces showed up to inform us that they had pulled strings and we were going on the roof after all! The constant change of information had made me numb. I felt a small amount of elation, a bit of a care, but the week had already worn most of me away. At least I was getting out of my room and going on that walk everyone kept pestering me about.  

We were accompanied to the roof by Brian, the head security officer, and Nina, my nurse, should anything happen. They brought us chairs and an umbrella in case of rain, and I was distantly touched by their gestures. The height should have been dizzying, but Brian switched off all the lights so we could see the fireworks and I realized I was not afraid of a ledge for the first time. I stared out over a city absolutely full of light. Hundreds of thousands of blazing lights everywhere, a swell of people all around us. It was beautiful in its own way, but nothing compared to a country night full of stars. And then the fireworks started. It looked like the city was exploding. Celebrations were beginning all around us, from behind the mountains, to the middle of the city, off along random streets, at the baseball stadium, even at houses right near the hospital. They were everywhere, and yet far removed from us. We couldn't hear a thing, just see the explosions. Colors. Sparks. Light. A city on fire for freedom and life. The two things I crave most.

It was beautiful. And I am very grateful to the staff and to my husband for trying so hard to make a crappy day something slightly better. But it wasn't the same. We left the roof and I was disappointed; I missed standing right beneath the fireworks and being so small beneath the sparks reigning down, feeling the explosions in my chest and the pride and awe as patriotic songs rose and fell with the powerful display. It definitely wasn't the same without hearing Neil Diamond's "Coming to America" and Lee Greenwood's "Proud To Be An American." So many medical personnel have remarked to me that "there will always be next year" to make up for this dismal week and lack of celebrations. I hate this sentiment. Only people who are not ill and have never been truly ill treat years so casually. There is not always next year. There is no guarantee of even tomorrow. And the amount of things that can happen in a year's time is staggering. But I truly, truly pray that next year is better. The past year and a half have been chock full of trials for both me and my family. I am battle weary and have little left to give to the fight. I just want to go home, and I want things to be calm and peaceful for just a little while. "Faith is the assurance of things hoped for, the conviction of things not seen." - Hebrews 11:1. "The secret to happiness is freedom, and the secret to freedom is courage." Courage. Strength. Freedom. Faith. My goal today is to find and exhibit these traits again, for my own sake.

1 comment:

  1. My heart aches for you, Jaymi. I know how important these days are for you. And I understand that sense of awe of standing in the darkness and feeling as if the fireworks are showering down on you. There is nothing like it. I also know how vital a can-do attitude is in conquering the big C. Hang in there. We're all rooting and praying for you.