Wednesday, July 1, 2015

Day +28

I cannot believe it has only been a week since my last post. It feels like a decade. The pain of Kaedmon's loss is still fresh, but much less raw. We still have not come to a decision on what to do with Gidget and Bao. I expected a lot of condemnation from family and friends, but was surprised to get nothing but support and advice to wait and grieve before making any decisions. It was amazing. I  was excited to get some relief from the dog issue when my sister, Jess, offered to come visit for the weekend and help me set up the house (and give me cuddle time with my precious new nephew). She brought along my nephew Christian for Rorie to play with, as well, and I was looking forward to a wonderfully distracting few days. My parents came up on Saturday and I spent the evening at their hotel watching the kids play in the pool, enjoying the feeling of family, and eating good food. And then I broke out in a rash. Everywhere. The tell-tale sign of GVHD.

We went back home and checked my temperature. It was climbing, but had not reached the "threshold." Colten called the doctor and was advised to have me take some allergy medication (to see if I was having an allergic reaction to something) and to go ahead to bed if I had no temperature. So I did. My rash was markedly better in the morning, but my temperature was not. I watched it climb every hour inwardly knowing that I was going to have to go to the hospital, but fighting it with everything I had because I wanted to stay with my sister. So I cooed at my nephew and soaked in his gorgeous baby smiles. And I cuddled him and caught some extra sleep. I basked in knowing that Rora was happily playing with her cousin. I cherished my sister. Right after my parents came to our apartment, my temp shot above the threshold, Colten made the call, and we headed to the hospital. I knew I would be checking in. I didn't pack any clothes, didn't make any plans, but I knew. I cried and hugged my sister goodbye.

When we got there my temperature was 103.6. The nurse did labs and blood cultures, and told me in a soft and sad voice that I would most likely be admitted. My favorite P.A. (please sense the sarcasm here), Jeff, came in to confirm my nurse's prediction. This time I was led to room 807. It is even smaller than the last room, and the "view" is literally nothing but the hospital wall. Lovely. The digs here keep getting better and better. Jeff got us checked in and Colten was so upset with him by the time we were settled (he's just...Jeff) that I haven't seen him again. Literally. The next day he was scheduled to be my P.A. but I got Barb (a very large, older, imposing woman who I would, personally, send in to deal with angry patients and/or their families) instead because Jeff was "busy." Worked out in my favor, I think. I like Barb. She's got grit. She asked if my husband was always "tense" and I told her, "Just when he's worried about me and doesn't feel like I am being taken care of." She nodded.

And then began many days of sickness, sleep, and the endless drone: "we just don't know for sure what is going on." A rash all over my body, fevers every time the Tylenol wore off, diarrhea, extreme fatigue, nausea, loss of appetite. It all pointed towards GVHD, but the doctors were hesitant to immediately treat for GVHD as many of the symptoms also pointed towards an infection. This is the tricky part of transplants. Doctors have to treat the underlying cause of symptoms, and the underlying cause of GVHD. An infection can ramp up the body and cause a GVHD reaction, or a GVHD reaction can just occur. What was actually happening?

Well, that was what we spent the last three days trying to figure out. Oh my gosh. I have been here for four days already. I turned 27 today. The past three days were a fog. None of my symptoms could be treated so as to not "mask" the possible GVHD. So I was given pain medications and made to sleep--a lot. And there were blood cultures. And skin biopsies. And questions and questions and questions. Katie came in to see me and give me a hug. I felt ashamed. I had done something to get my self sick and landed myself back in the hospital. I didn't want to face her. Jessica came and sat with me on Monday. She had to leave Tuesday, and she wonderfully took Rorie back with her to stay for the week so that Colten could be with me while we got things figured out. Although it hurt so much that all this happened right after losing Kaedmon and right during my sister's visit, it was actually a huge blessing that she was here to help. Once more, what would I ever do without my sisters?

Today, I opened my eyes with a dull "ugh" and prepared for another worthless day wasting away in a bed. Chalk this up as the worst birthday ever and go back to sleep. I haven't walked around in three days. And I don't care. Why not lie in this bed until I become a part of it? Today was my victory day. Birthdays are so special to me. I want to get old. I think it is such an honor. I can't imagine anything better than getting to live a long life surrounded by family. With each year that passes, I have proved someone wrong, and been given another miracle. Another year! Maybe I'll have more children. Maybe I'll get to see Rora get married. Maybe I'll get to hold my grandbabies. Maybe Colten and I will celebrate our 25th anniversary (hopefully not in a hospital). Birthdays remind me that anything is possible. But today I did not feel the usual birthday magic. Just another day, in another hospital room, surrounded by sterile instruments and random medical personnel.

I groggily pulled myself out of bed for my morning weigh-in and exam and then flopped to the other side of the bed and prepared to go back to sleep. But a face I didn't recognize popped itself into my room after a fluttery knock. She introduced herself, I'm sure, but I can't remember her name, only that she was a P.A. The thing about GVHD: they don't lie about its side effects. The mind is the first thing to go. I do remember she had a stud in her nose that I found to be quite tasteful but still odd for someone in her profession. Anyway, she finally had results. All the blood cultures were still negative (it takes 3 days to be absolutely sure), all my viral tags were negative, and the skin biopsy of the rash on my back came back positive for GVHD. So, it appears that I am just having a GVHD reaction, and will have to start steroids to get it under control. No infection. Finally. An answer. And relief. What was not wonderful was the added little present of starting an all-liquid diet to give my stomach a break from the GVHD attack. Since I had no appetite anyway it sounded like no big deal, but the steroids have worked wonders and as the day has gone on I've felt more and more like myself. And like I need a hamburger. With bacon. And another hamburger on the side. And some freaking birthday cake. But I have chicken broth. Yummmmmm.

My doctor stopped in for his usual 30 second meet-and-greet in the middle of the day and wished me a happy birthday. He looked at me for a minute and then said, "GVHD is actually a very good present. This means your graph is strong and your donor cells want to fight. They will kill that cancer. And we can control this GVHD. It's very good. Perfectly smooth transplants are not always the best transplants." This made me feel infinitely better. You see, I had been feeling infinitely crappy (both mentally and physically). This is the first transplant I have ever gotten a fever after the transplant. This is the first transplant I have ever had to return to the hospital after being released. This is the first transplant I have ever had a hiccup. Ever. And maybe that will be the difference. Like my sister said, maybe my birthday present was to finally be cancer-free (be careful what you wish for, you never know how it will be granted). So today sucked. There were no celebrations. No planned events. No friends or family around. No freaking cake. But I turned 27. So anything is possible. And when I get out of this hospital room (in likely 2-3 days depending on how things progress), I am going to celebrate. I am going to celebrate my birthday. And my anniversary. And being out of the hospital. And GVHD. And Kaedmon. And life in general, the good and the bad, because it is worth it. And I am going to eat cake. You should, too.


  1. I'll make you a cake any kind you want just tell me and it will be there

  2. I LOVE YOU BABY. You better believe we will celebrate when you get out of this dang place.

  3. Happy birthday! !! Glad you're feeling better mentally and physically! Love you!

  4. So, irritating PA Jeff was never seen or heard from again? Any Sicilian heritage on Colten's side of the family?

  5. Still praying for you. We love you.