Sunday, May 31, 2015

Day -3

Transplants are like marathons. I am not a runner. I have tried to be a number of times, but always ultimately fail. It's just not my thing. But my big sis is an avid jogger. It clears her mind and relieves her stress (she's cool like that). Half marathons are something she takes on as personal challenges, and she has described them to me as mind games. The problem is not actually getting your body to go 13 or whatever miles, it is getting your  mind to let your body go 13 or whatever miles. You might start out strong and positive, have some moments of doubt every couple miles, and believe that there is absolutely no freaking way you will survive another step around mile 9, but if you mentally push past that, you make it. Transplants are like that. A transplant is a huge marathon, with each day being a mini-marathon of its own. And really, the problem is not getting your body through the procedure, it's getting your mind through the procedure.

My first transplant was an emotional experience for me. I was terrified that I would die during the transplant--actually, about 100% sure I would not make it. Many doctors had been unkind about my chances of beating the cancer with it having come back a second time in general, and looking at papers I was expected to sign at 17 that said I had a huge chance of dying from said transplant did not help my emotional state. I did not feel like I could agree to the procedure. My social worker sat down with me and said this: "You're scared of dying? That's why you don't want to do the transplant?" (I nodded.) "Well, you are definitely going to die if you don't do the transplant. And you know what? You could die when you get in the car and leave this hospital. I could. Your doctor could. You could die tomorrow. You can't let the possibility of death dictate your decisions." He was kind of a jerk, but his words stuck with me. I can't tell you how many times in the past year I have heard, "'re very strange. There are just not many people in your position. When Hodgkin's comes back, that's usually it, and we definitely don't see many third time transplant patients." I chock it up to my innate stubbornness and some purpose that God still has for me. We'll see.  

Anyway. It was emotional. The worst part of the transplant actually happened while my grandparents were visiting, which was about halfway through the procedure. So far, my mom had warmed me up canned Campbell's Chicken Noodle Soup that we had personally purchased for most of my meals. I had mouth sores and no appetite, but I was determined not to have a feeding tube put in. So I choked down the only soup I could handle that had enough calories to keep the dieticians off my back. The nurse I had on this particular day was apparently "not aware of" (not accepting of) the new policy that patients could bring in their own food as long as it was processed--i.e. canned, in a sealed bag, etc. He threw a fit that my mother was trying to bring me in food other than that from their cafeteria, and actually took the soup away. I lost it. I bawled and bawled, and felt like such an idiot as my wise and calm grandma hugged me and said that it would be alright. She was on my side, of course, but I felt stupid for being so upset over soup. I was just working so hard to eat, and we had done nothing wrong. It was unbearable. The nurse ended up being "told" about the policy (I am not still bitter about this) and I got my soups back, but I will always remember that day. It just about broke my resolve, and I have thought back to it many times. I had pretty firmly convinced myself it was just because I was a hormonal teenager until today.

Today was really emotional. Lot's of drama that really stemmed from nothing. It's ridiculous how pleasant conversations can turn into huge miscommunications and thoughtless words beget more thoughtless words. And it doesn't even really matter if someone is sick or what the circumstances are, drama happens, but I have the emotional fortitude of a 17-year-old right now, it seems. And I cried like I did at 17, and I felt like the whole world was out to get me and that so many people are terrible human beings. I wish my grandma had been here to give me a hug. I also really miss my daughter. Seeing her face on a screen brings me almost immediately to tears. This is also illogical (we just watched Star Trek) as we have sent her away for 3 or 4 days before and enjoyed the freedom to spend time together many times, but right now I physically ache for her. I just want to see her sweet face and wrap her up in a hug. I want to hear her babble on about all her little passions and just soak in her presence. Three more days.

But really, the transplant is going ok. I have been nauseous the past two days, but still able to go on walks and eat the calories I am required to. My counts just barely hit the "normal" range today, which is somewhat humorous. For some reason, my blood counts have been incredibly high for months. Doctors thought it might be a secondary cancer and have cut out more portions of my body than I care to think about, as well as required me to have another (unnecessary) bone marrow biopsy, all to no avail. No one understands what it means, but all the medical master minds have decided it is odd and interesting, but nothing else. One doctor told me that high blood counts are sometimes seen in people who are very stressed, and that's probably as good an explanation as any with my mental state over the past few months. If my blood counts did not drop as low as normal patients because of how high they have been, it would get me out of here a lot sooner. Also, one doctor told us that studies have shown patients whose counts do not completely bottom out tend to fare better post-transplant. Maybe there is a higher plan in the works.

Today was my last day with my favorite nurse and I soaked up every minute. She got called out of my room twice because she had stayed to talk for 15 or 20 minutes. :-) I cherished the conversations full of belly laughs and shared stories. I'm going to miss her. Colten also leaves tomorrow morning, and just typing those words just about brings me to tears. I am not sure how I will fare without his steadfast spirit and reassuring strength as the days get harder. I have to admit, I am not much looking forward to tomorrow. But, tonight we took a walk around the hospital after the sun set. The walkway was lit with pretty lanterns and the trees were silent silhouettes above their glow. Their leaves were mostly dark as we passed underneath, but they were flecked with bits of light that were stunning. I guess it comes back to the age old adage, "the light always shines in the dark," and that is true no matter how much darkness there is, and no matter how small the light.

Saturday, May 30, 2015

Day -4

Last night ended in a very unexpectedly pleasant way: my hubby drove up to surprise me and is going to stay with me for the weekend. Pardon the sap, but I wonder on almost a daily basis what I did to deserve such an amazing man. He is one of my greatest blessings. End sap. :-) Anyhow, the day passed much quicker today, the walks were not as hard with a hand to hold, I got foot and calf massages, and life in general was much happier. I also had my favorite nurse again, and found out that I get to have her one more time tomorrow. She is fantastic. Her name is Katie, and she is the perfect combination of a super laid back, by the book, and yet all-around compassionate nurse. She is also very dry and sarcastic, so we get along well. She is a lot younger than me (which is a crazy sensation, many of my nurses are younger or the same age as me, while during my first transplant I was just a kid), but I feel a great kinship with her. She met my husband this morning and told him "she's my favorite patient" with a big smile, and then proceeded to stop in all throughout the day for long chats about Netflix, Facebook, iPhone watches, you name it. It was fun and such a wonderful distraction from what is actually going on. I am so thankful for the blessing of being surrounded by good people. I also got to talk to my sister for awhile, and my dad, so it was a day filled with people I love.

Unfortunately, my chemo finally hit. One of the chemotherapy drugs I am on I had in my last transplant as an outpatient and had no trouble tolerating it, but the second chemo I am taking is a very harsh chemo, though I am on low doses by transplant standards. Actually, I finished my last dose of it yesterday, but I felt the effects today. The past two days I was given anti-nausea medications before the chemo, and since I did not have it today, I was allowed off of my all day liquid infusions and not given any anti-nausea medications. Turns out that wasn't the best plan. I've been feeling pretty pukey (in every sense of the term) all day. I think the official term for this feeling after chemo is "meh." Not terrible, definitely not great, just "meh." Kind of like this blog tonight. ;-) Really, I guess I don't have much to report. Another day down, ready for another day tomorrow, and hoping this chemo junk has finally worn off by then. Good night. 

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.

Thursday, May 28, 2015

Day -6

Here we go again: bone marrow transplant take three! Third time is a charm, right? Today was spectacularly surreal. It was a combination of the transplant I experienced just two years ago, and a huge time warp back to the one I had when I was 17. The worst part is always the drive away from the house, knowing you might not see it ever again, knowing that you want more than anything else to just be home with the people and the things that you love and not dealing with this crap. The second worst part is walking through the door into the room you will spend many days of your life trapped in, something I did not have to endure on the last go around.  It is always silly to me because I realize that the transplant has to start at some point, it has to be hard and protocols eventually have to be followed, but medical personnel seem to feel that the moment a patient crosses that threshold into "the room," that patient could at any moment die if he or she were to step back out without being wrapped up and wearing a mask.

I experienced this today when my aide came to get me for weight and height measurements and escorted me to the different stations without having me put on a mask and a gown. I had just walked through the entire hospital, had not had a drop of chemotherapy, and could leave that very moment without a thing happening, but because I had stepped through that stupid door, the charge nurse (who was holding the door and motioning me out to follow the aide, I might add) felt it was pertinent to rake me over the coals about never leaving my room without that mask, gown, and (the new addition) gloves. I calmly and happily informed her I had not even been given a mask yet, to which she replied, "Well, I will fix that right now," and pompously walked off to find that blessed mask for me.  I swear, people who do and say such stupid things make rational people like myself want to do equally stupid things. Lick the wall. Run through the halls of the sickbay.  Encourage someone to cough on me. I don't know. Something that might actually be worth her tirade about the necessity of the stupid mask getup. By the way, I detest masks.

Anyhow, the rest of the day wasn't so bad. I lost it a little when Colten and Aurora had to go home, but I composed myself pretty quickly. A week is not so bad, and they will be visiting again before then, too. Nothing hurts quite like sitting in a room you can't leave and watching your world freely walk out the door, though. But the nurses are mostly nice, and the recliner isn't too shabby.  I am about to try out the bed, and hoping for some good rest tonight. Until tomorrow...