Day +10

Last night was rough.

I now have sores over much of my mouth and throat. I had a small headache last night that I assumed would go away with a night of sleep. But I couldn't get comfortable enough to sleep. My mouth guard (for clenching my jaw) was rubbing on the sores, so I decided to take it out. Then I chomped down on my tongue and got a big hematoma on my tongue.

I decided to try what they call radiotherapy--a magic mouthwash type rinse that isn't drying like magic mouthwash. That seemed to help somewhat with the pain. But the headache just got worse. I knew that Ativan made me very sleepy the day after I took it at midnight so didn't want to take any. Because I have no neutrophils (and my temperature has been elevated--but not high enough yet to be considered  a "fever") I cannot have Tylenol. I tried an ice pack, which didn't work. Finally at about 3:30 am I agreed to take a low dose of Oxycontin--which I wanted to avoid as much as possible this stay. I'm not sure if it helped with the headache, but I was able to sleep for a few hours.

I have no appetite and am having trouble forcing food. Previously my days had been nicely broken up by meal (and snack) times. Now I dread meal time. I've been ordering some solid food each meal to attempt to eat, but subsiding mostly on protein shakes--which are still not great, and hurt my mouth and throat.

My blood work was decent today in that I didn't need platelets, red blood cells, or magnesium (hoping that trend continues with the oral meds). Still no neutrophils. Tomorrow is methotrexate #4 and I'm scared because it will likely make things (counts and mucositis) worse. But I will be happy to have that last med crossed off my checklist and then hopefully the climb back up will be able to begin.

Today was a cap change day, so I was able to be disconnected from the IV for several blissful hours. Earlier in the week I envisioned myself walking all over and being super active to enjoy my freedom, but I was only able to take two short walks. So tired...

Still felt good to wear my own clothes

As I walk around the unit, I see some of the other patients--either walking the halls, or working with PT/OT, or in their rooms. There is one patient on the other side of the floor who is in really rough shape. I have no idea whether it's transplant-related or GVHD-related or something else, but this patient is wrapped almost head to toe, does not get out of bed, has a feeding tube and always has a room full of medical staff. It's scary to see, but it also reminds me that while I may not WANT to shower or walk some days, that I am able to do both and that alone is a tremendous gift. This patient inspires me to push and also to appreciate what I have.

My hair is falling out. It's amazing how quickly that happened, as I've been gently tugging at my head, wondering when it would happen. Today I didn't even try, but saw hair on my pillow. Sure enough--it's coming out in clumps! I'm reminding myself that this is just more evidence that the chemo is working! (in case the mouth sores weren't evidence enough.) Unlike the past leukemia chemos, I'm pretty sure that this time I'll be completely bald again. And I'm glad I brought hats from home because I'm suddenly cold again.

I am planning to use topical lidocaine to numb parts of my mouth before meals and try to get some food in each day. No more being tough and putting up with the pain! I've asked for Ativan early tonight so I can hopefully sleep through the worst of it (besides night time labs, vitals, etc.).

But again, I'm just where I am expected to be--none of this is cause for concern or unusual. And it's another day in.