Friday, May 29, 2015

Day -5

Well, today I started out feeling very determined, but I have ended feeling pretty dejected. There are only a few things that any BMT patient needs to do: eat, drink, move, sleep, repeat. Sleep is sort of optional, but the others are required. The patients who are stuck in the hospital for endless weeks, or the ones who never make it out, are the ones that refuse to do one of those things--most patients refuse to move. Like my social worker said, "They think they can lay in bed and sleep through it, but they are killing their own bodies." I know this. And while my first transplant kept me incredibly restricted (i.e. never allowed to leave the room), I was still told to do minimal exercises with physical therapy bands and such. Times have changed, and patients are now strongly encouraged to go on walks three times a day around the bone marrow floor (suited in mask, gown, and gloves, of course) as well as perform physical therapy exercises in their rooms multiple times a day. For those of us lucky enough to have our blood counts still up, we are even allowed to walk around outside.  And there is laughter here. Kids run around outside the rooms and I hear conversations and happiness quite a bit. My first transplant was very different. There were no running children, and there was no laughter in the halls. Actually, had I gone to Huntsman for this transplant, there would have been no running children there, either. So I am grateful to be where I am.

But exercise is key. It helps your body heal, and that is true of just about any sickness, mental or physical. The other component is a positive attitude. So, I set out today to achieve both things. I got up, had a great breakfast, dawned my germ-free garb, and walked a full mile around the bone marrow unit. Then, I met with a physical therapist who gave me many great exercises to help get my muscles back in shape, and I did every one with gusto. I moved and grooved the whole day, and I positived the pants off any nurse or aide in my room. One nurse hugged me and told me that patients like me made it worth it to her. She also told me I'd definitely be out in 21 days (the average for haplo patients). I felt great. And as a complete side-note, I always try and be extra kind to nurses. They seemed shocked when I say "please" and "thank you" for just doing their job, but they do all the work and are underpaid. Doctors I don't have a problem copping an attitude with when necessary. They do hardly anything and make bank. Besides, getting in good with the nurses is just smart, they have the power to do many things. Anyway.

This evening, I finished my day with a walk outside. This took a lot of guts for me because I truly don't appreciate being stared at, and trust me, nobody misses you in the getup I have going on here. But I walked out of my room with my head high, rode the elevators down and walked through the hospital with a defiant glare (all people can see are your eyes, anyway. It's actually fun to stick your tongue out at people because they will never know...). Then, I started the trek around the hospital. I just did this same walk last night with Colten and Aurora, and I knew there was a rather large hill that Colten had supported me up, but I was determined to conquer it. And I did. At a much, much slower pace, but I made it up. And then I went and sat on a bench and just watched the sun go down, smelled the flowers, and enjoyed the breeze laughing in my ear. It was beautiful.

But then I came back to my room. And it sunk in that I had done great today, but I was very tired. And I had to get up tomorrow and do it all over again. That's the crappy thing about a day well lived, it has no bearing on tomorrow. And then I started to get a cough. And then my temperature started to creep up. Nurses are not worried yet, but if I get sick, it will definitely postpone the transplant (at the least) and I will be stuck in here a lot longer than 21 days. It hurts so much to do everything right and get nothing but bad stuff back. And I miss my husband. And I miss my gorgeous daughter, who I said goodnight to on a screen once again. So I feel blue.

But I met some amazing people today, and I think God knew I needed them. The woman who cleaned my room was from Africa, and her name was Beatrice. She was beautiful and had a personality that sparkled, but I could tell she was lonely. She asked how I was doing in halting English, and when I responded with a smile the floodgates opened. I sat somewhat shocked as she told me that she moved here with her husband from Africa and was so happy; they had three children and she was pregnant with a fourth, and then he died. She had no education, did not speak any English, and had four children she needed to care for. She told me, "I cry. And cry and cry and cry. And then I think, this does not fix. I have four children. So much to be happy for. There is always something to be happy for. I come from bad place, see so much bad and so much sad, it is best to be happy." And she talked and talked and finally stopped and apologized. She said, "I am sorry, I talk too much. Most patients are grumpy, not talk, too sad. I just wish to tell them to be happy, to get better, to always be happy. There is always reason to be happy. God is good." And then she took her ray of light and left my room. I truly detest meeting new people, hate talking to people I don't know, and generally feel awkward in social situations that involve people other than my family and friends. But I hope to see her again tomorrow.

And on my walk, I met a little girl. She was sitting on an exercise machine set out for the BMT patients on the floor, and she caught my eye because she had dark hair and captivating blue eyes like my Rora. I waved as I walked by, and she piped up, "You're just walking?" I responded, "Yep, I am just walking. It's good for you." She started after me and said, "Where's your thing?" I stopped, unsure what she meant, and then realized she was talking about the pole most patients walk around with that has medications and the saline crap they load us up with all day long. I am allowed off mine a few times a day because I drink enough I don't need constant liquid infusions to protect my kidneys. I said, "I don't have to have it for awhile, that's pretty neat, huh?" She looked at me like only a little girl can and said, "My daddy is really sick." Without her speaking the words I saw a dad who is not "just walking" anymore, and who is probably never disconnected from his pole. I burst into tears and wanted to hold her close, but all I could think to say was, "I really hope he gets better, sweetie." She nodded and wandered off down the hall. I saw her on and off throughout the rest of my walk, peeking around corners and giving me smiles and giggles. I really hope he gets better.

That was the first time I truly thought about the other patients on the floor. My nurses are always busy, and I hear other patients, but I never see them. I think I am one of the few lucky ones who is not down for the count. I really hope they get better. And Colten's cousin has a little two-year-old battling cancer whose pictures melt my heart. I look at her sweet face and I just want her to be well. She is at Primary Children's Hospital, which I can see from my room. She got chemo there today and I tried to send as many positive and healing vibes as I could. I really hope she gets better. So I guess it's ok to feel down, as long as I get up tomorrow and try again. Because we all just need to get better.


  1. You are loved beyond belief and you are in our prayer constantly

    1. I love you, too, Dad. I will give you guys a call tomorrow.

  2. Hang in there, Jaymi. I have found that whenever I start to have a pity party, God brings along someone who has it far worse than I do. It helps me put things in perspective. You are always in our prayers. (In case you haven't figured it out, this is Aunt Mari. The only way I can comment is if I have a Google account, so I'm borrowing Joey's.)