Since Being Home

I would have been just coming home from the hospital today. It would've been incredibly difficult for all of us if I was still there. I'm grateful Heavenly Father inspired a concerned and caring doctor to let me go home after we were done with the chemo. Dr.El-Shami (my oncologist) has told me several times how unusual and risky it was to let me go home. But, he did it because I've got a family at home and he knew we all needed each other. I've had to return to his clinic twice a week to have my blood drawn. As expected, my white blood cell count was down and my immune system shot. He warned me several times to go right to the ER with a fever, diarrhea, etc. In fact, he fully expected me to get a fever last week. Between the priesthood blessing Cory gave me and the careful hand washing we've all been doing, I've been able to surprise him with no fever.
 I have had to have 3 transfusions. The first time was just a platelet transfusion. The 2nd time, I needed both blood and platelets. I got through the first unit of blood and a unit of platelets when I started to itch on my trunk. The nurse asked if it was normal itchy. I thought maybe it was just from hair (my hair had started falling out the day before), but it started spreading. She turned off the platelets and called the doctor. My bottom lip started to swell and I broke out in hives from my neck to my toes. I was itching like CRAZY! I felt so bad for all the times I've told my kids not to scratch their eczema. The doctors came in and gave me more benadryl (I'd taken some before started the transfusion as a precaution) and some steroid in my picc line. The reaction made me really nervous. I called my dad and said a lot of prayers to help me to be OK and to feel calm. Within half an hour, the itching subsided, my rush of adrenaline slowed down, and I was able to go to sleep. I emailed Dr. El-Shami (this was all done overnight in the hospital) to let him know what happened, and that it really freaked me out. This was his response:

Hi Janna, Thanks for keeping me in the loop. Transfusion reactions are not uncommon. And I apologize for not having counseled you in advance on such reactions. Blood transfusion is essentially an organ transplantation and immune-mediated reactions are not uncommon. The vast majority though are benign and respond well to steroids and antihistamines (as the one you had yesterday did). So do not worry. Everything is under control. This may not be the last transfusion reaction you have, but then again, nothing that we cannot take care of. Hope your weekend is relaxing and enjoyable. See you on Tuesday.

 I was able to go home the next morning. That day (Saturday), I felt the best I have for weeks. Getting some new blood really helped! I didn't get lightheaded every time I moved, my head wasn't spinning, I felt more energetic. My mom and I took Clara for a walk and that felt WONDERFUL. I also had more of an appetite than I have for a long time. Not only did I want to eat, but it didn't hurt my mouth.  By Tuesday, I was feeling slightly less energetic and somewhat headachey.  I ended up needing another platelet transfusion.  Since then, I've continued to feel better.  My appetite kind of ebbs and flows, but it's been on the up again the last few days.  I went in today for another blood check and, while my levels (white blood cells, hemoglobin, and platelets) haven't fully recovered, they are moving up.  Fortunately, they've recovered enough that I didn't have to stay for a transfusion, but not enough that I have an immune system.  Thankfully, I really feel pretty darn good; close to normal!

When we met with the doctor on Tuesday, I finally showed him a picture of my kids (why haven't I done that before?!).  He smiled and said, "Yes, you needed to be home with them."  I told him how healing it's been for all of us for me to be home and he said, "And you need to know it has been for me, too."  We feel grateful that he has been so mindful of us and our situation; not just shuttling me through as a patient, but helping a family.

Janna and Clara