Tuesday, June 2, 2015

Day -1

Today is the last negative day. That means it all gets real tomorrow, folks. Day 0. D-Day. Transplant day. Today has been a blur. My mom got a picc line placed early this morning and I went to sit with her while she donated. She was amazing, by the way. The nurses went on and on about her. She never got nauseous or dizzy so they were able to go at the fastest speed and she was done in just a couple of hours. She didn't complain about a thing, and even kept pushing my dad around in a crappy wheelchair after the picc line procedure (not ok, not supposed to lift, pull, push, etc. anything over 10 pounds). When she got back to my room she looked like she was about to fall over, so I asked her to go back to her hotel and sleep for awhile. I hope it helped. She does have to donate again tomorrow, but they said that is pretty standard for anyone over 20+ years (so the majority of people donating).

I had to leave towards the end of the donation to go have radiation, which was a breeze. They offered me my choice of Pandora station, and I requested Third Day. I believe God speaks to us. It might be a person He puts in our path at a certain time, a conversation that happens just when you need it, or, in my case, a song that just touches my heart. I needed to hear God speak today. Radiation has never been a problem for me before, but it seems to be the thing that doctors and nurses worry about the most. Regardless of my personal history, if enough people worry about something, they can eventually make you worry, too. So I was worried. Would I get nauseous? Would I feel dizzy? Would my weakened muscles hold me up? God responded pretty quickly. I love Third Day, and any song would have soothed my nerves, but God chose "Mountain of God" to be the very first song I heard today. "And even though the journey's long, and I know the road is hard, well, the one who's gone before me, He will help me carry on, and after all that I've been through, I finally realize the truth, that I must go through the valley, to stand upon the mountain of God." So thankful for a Savior that lives, and that gives me comfort in every moment of doubt and despair. I am going to stand on the mountain.

I felt held today. Loved. Seen. Cherished. I saw my parents this morning, talked to my big sis for a spell, and then spent the early afternoon with the radiation crew (who are their own kind of wonderful). Each of the kind ladies who worked with me thanked me for my choice of Pandora station, and commented on how beautiful the music was. The radiation doc stopped in to mention again what a miracle Rora was and to wish me well on the transplant, and also said, "This station is awesome!" It was nice to be with fellow believers. Then I spent the late afternoon with my newest nurse, Tina, who is now also my favorite (along with Katie). She literally spent almost an hour in my room shooting the breeze and giving me a glimpse into the life of a transplant nurse. Their jobs are rough. But she told me, "It's a balancing act. You always take patients home with you. Patients you love, patients you lose. You take home happiness and you take home agony. But it's worth it, because I go through each day with such a wonderful perspective. No matter what I come up against, I've seen a patient go through worse, and I know that I have it good, so I'm always thankful. And I love my patients. If I can make their lives better, it's worth it."  She's amazing. And she loves (and owns) pitbulls, so I like her even more.

I have not really met a nurse here I did not like. This unit is filled with amazing people that I feel blessed just to know and interact with. I do not know how they do what they do every day, it takes very special people, and it would be easy to be distant and cool towards patients and just get the job done. But they aren't. They are warm and funny and caring and all have their own little quirks. I love being here and getting to know them. They also took very good care of my mom. All the nurses met her and complimented her and advised her to rest and take good care of herself. I appreciate it more than I can say. And it's not just the nurses. I'll admit, I honestly have only met a couple of doctors here that I really like, but all of the NP's and LPN's and PA's are also amazing, as well as the aides. My favorite NP is a doppelganger for my Aunt Becky. Colten actually calls her "Becky" when we talk about her, but her real name is Melissa. She was the very first person I met when I came here two years ago, and I have never forgotten her because I feel an instant affection towards her due to how much she reminds me of my aunt. And like my aunt, she is also just an awesome person. She is so laid back and funny, she tells me what is going on straight up and actually listens when I express concerns, or when I tell her that nothing is wrong. She always wears bright colors and fun shoes and she makes my day. I had her for the last time today because she is going back on outpatient rotation for 5 weeks. She said, "I better never see you again on inpatient rotation, you had better be long gone. I'll catch you on the free side." I can't wait.

I realized today how many people are around me and how much they care about me, even though they don't know me that well. And that's true of the many people around the world praying for me, too. It's humbling and comforting. I had very few moments alone today, and many moments of laughter and companionship. The time passed so quickly. I overheard my nurses talking about me today. Tina was telling my night nurse, Amy, how much she loved me and how sad she was that she would not be here to do my transplant tomorrow. Amy responded that she understood because she loved having me as a patient. It felt really wonderful. I hope that no nurse ever leaves my room without feeling appreciated. I hope I can make them smile, give them a room to sit and chat in, and let them take home some happiness for the day. That's my new goal here, to make the day (or night) a little better for each of my nurses. They deserve it, and they give back in kind. I am so blessed. 

So many people wanted to talk about my transplant tomorrow. Tina, particularly, wanted to know if I was feeling anxious or excited. I also had a lot of people wish me a new happy birthday tomorrow (most hospitals celebrate transplant day as a birthday as your body is basically being reborn, so I guess I will now have four birthdays). I had not really thought about it. Maybe I didn't want to. It is a very exciting day, but it's also the day there is no turning back from. I could leave the hospital right now and honestly be just fine. I could go home and life could go on as usual. After tomorrow, that all changes. And after tomorrow comes "the storm," which I am worried (terrified, extremely upset, petrified; pick your word of choice) about. In haplo transplants, because the donor is not a complete match, GVHD sets in almost immediately. Some patients manage to avoid what doctors call "the storm," but most don't. Patients get fevers, aches, chills, etc. I've been told the sickness ranges from "Eh," to "Wow, I feel sick," to "Oh my gosh I feel like I'm dying!" This lasts for two days, and then patients are given chemotherapy again for two days and all the symptoms "magically" (that is the word the doctor used) just vanish. Then it's just a matter of waiting for my blood counts to go back up and I am out of here, providing it all goes as planned. Which it will. And everything will be fine. It always is. But I'm scared.

Every time I do this, as I watch the stem cells go into my body, I have to push down the absolute panic I feel knowing that I can't take them out, and I can't control what will happen next. It's a terrifying feeling. Which is probably why they heavily medicate you so that you feel lethargic and disconnected. They say it's to prevent physical reactions, but it probably helps dampen the mental ones, too, because I have yet to yank my line out and run like I have seen myself doing in my head. :-) Tonight I am taking solace in my favorite Bible verse, Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." This verse is written on my heart (and I eventually plan to have it partially written on my back as a tattoo that says "be strong and courageous") and it always brings me comfort. I need it tonight. Please Lord, let everything go well tomorrow, and in the days ahead. Here's to tomorrow.



  1. Praying for you! You have been in my thoughts since I talked to you yesterday. Keep your chin up and continue to trust that God has you in His hand and won't let go. You are loved!

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  3. When you come home, I'll buy you that tattoo and hold your hand while you get it done. Wish I could be there to hold your hand right now. I'm so proud of you and the incredible woman you are! Love you!

  4. Your blog today is beautiful! It shows what a strong constitution and mind set you have, which they say is more than half the battle. If sheer will power would get you well, you'd be a shoo-in for success! We are a family of very strong-willed women - just ask our husbands! - PRAYING FOR YOU RIGHT NOW, as I'm assuming you're having the transplant about now. We'll pray those little bugger cells will behave and take hold so you don't have any of the scary after effects - after all, they're coming from a strong woman, too, so will have a mind of their own!! Love you so much and am very proud of your courage, witness, and sunny personality that lights up everyone who comes into your room. "One day at a time, Sweet Jesus....."