At Home

It's 8:34pm.  Jonas is working on homework and Max is in the bath.  Emily is keeping them on task.  I have been sent off to write this post.  It has been a very good day.

We'll start with yesterday.  I have no neutrophils.  I haven't had any for over a week.  I don't just have a few.  I have zero.  Last time they wouldn't send me home in that condition.  I'm not sure why they let me out this time.  Dr. Ash, who is also my favorite, wasn't happy that they were letting me out.  She thought I'd lobbied for it.  This isn't true.  The head Dr. had been telling me for a week that he was going to have me sent home.  She didn't want to overrule him.  So here I am.  I've been given plenty of precautions to avoid public places, going outside, letting anyone in my home - especially anyone who might be sick, and to watch for any signs of illness.

The day started with a spinal tap just before noon.  I stayed flat on my back until 3.  There were a couple of meals in there.  The hiccups didn't get me until later in the day, luckily; they cause a lot of lower back pressure.  As it turns out the dexamethasone is the hiccup causer.  Emily arrived at 4:30 and drove me home.  The checkout process was pretty painless, we were on the road by 5:30.

There is a funky lump where they did the tap but I'm not worried about it.  No headaches, no strange colors.  Lidocaine is known to cause such swelling.  We'll see.

Being at home and on steroids has been wonderful, plenty of energy.  Tomorrow is my last steroid day.  That'll be rough afterward.  You feel really tired until the adrenal gland kicks back in and your body adjusts to the regular 5mg of steroids vs the 45mg they're feeding me.  Still, much less painful than what we did on the last go around with prednisone every day for 6 weeks.

Today I did vacuuming, dusting, dishes, laundry, scrubbed the kitchen floor on hands and knees, scrubbed down every surface in the house, did a variety of exercises, ate a lot of food, administered IV medications, gave myself a shot of neupogen, and did homeschooling with Max in the morning while Emily was gone to work.

In between the doing there were several good visits.  Gavan and Amy stopped by for lunch and we managed to get Gavan to stay much longer than he should've.  Diane, my mother in-law, and Bethanie came by to drop off some dinner.  It was a by request meal, no less.  It was delicious, funeral potatoes, chicken, and salad.  My sister Jennifer came by to visit just before dinner.  She took the boys to visit her close friends and a couple of dogs.  Max loves dogs, Jonas likes dogs.

It's been nice to have the company, the energy, and the free time to eat dinner with just Emily (thanks Jenny).  I'm out of energy now.  But it has been a great day, just like my days were two weeks ago, before relapse.  My natural anxiety level is high.  With no immune system it is a bit higher.  I wasn't able to maintain my cool as well as I normally do today.  There weren't any incidents or anything, I just wasn't as relaxed as I would like to have been.  Emily stepped in to buffer a few times.  It's all good.  Emily is wonderful, she will save us all.  If that's not the case, panicking may as well commence now.

For the curious: I have another 29 days of the first cycle of the Hyper-CVAD protocol left, this is the chemo.  I have no idea how many of those days will be spent in the hospital, at least 5 will.  If I'm lucky I get to be out for 8 more days.  That's when the B leg, which lasts 21 days, starts.  The medicine they give during those first 3-5 days requires that I be admitted to the hospital the entire time.  Sometime near the end of the 29 days I'll have another bone marrow aspirate to determine if they are comfortable with the amount of success they've had with the chemo.  If they are comfortable with my progress we will begin the bone marrow transplant process.  I will not be let out of the hospital during that process.  I will be in for at least 12 weeks.  Some people are in for much, much longer.  So, if all goes well, I'm in and out of the hospital for the next 30 days and then I'm in the hospital for no less than 90 days.  That puts early out at the beginning of July.

That, my friends, is the update.  It is now 9:08.  I have more to share but I don't have the energy to write now.  Feel free to ask questions you may have in the comments.  I may be missing obvious questions, I'm glad to answer them.  I do reply to comments.

The picture of the day, a twofer:  The boys visiting canine friends.