From the Horse's Mouth

Here is Katie, the day nurse today.  She is changing out
things on my IV cart

Here we are at day 9 (at the hospital); day +5 per the stem cell transplant calendar.  We’re almost to the half-way point (yea!).  Here’s Don’s current report from the source--Don. 
So far, the overall experience has not been as difficult to deal with as I anticipated.  The doctors say that I am at the good end of the scale on everything, so that helps.  I should be at my lowest point in the next two or three days, and then start on the path to improvement.  I’m keeping graphs on several of the key blood readings, and I’m going down for a soft touch and go landing.  Extreme fatigue will likely be the new thing to deal with for a while.

The biggest issue so far has been keeping the dreaded nausea at bay.  They are quite good at that by constantly tweaking drugs and doses.  The nausea is never out of sight, however…more like it’s masked.  My appetite has diminished, and it’s hard to find something appetizing to choose for meals.  I have a button on my IV cart that gives me extra anti-nausea drugs.  I use that when I wake up, and also before breakfast.  Ensure has been a fallback when I don’t feel like eating anything.

The drugs altogether are keeping me tired.  I nap a lot.  I am sleeping pretty well at night…given that I am awakened several times by staff, and also to go pee in the urinal pails.  I am limited to sleeping on my back, because my IV lines are hooked up 24 / 7 (don’t want to get tangled up, and don’t want to lie on my catheter).  Mobility is interesting in that any movement requires taking in to consideration the linked IV cart.  Bathing has the same considerations, but I’ve worked out a system (in addition to being connected to the cart, I can’t get my lines/dressing wet).  I can leave the IV cart unplugged (electric cord) for a while, but generally plug in whenever moving to another party of the room.  The air circulation system in the room is quite noisy, and is hard to put completely out of mind.  I am sleeping with my hearing aides in and on enough to communicate to the staff when they come in during the night.

I have not shown any hair loss yet…may still happen, but maybe I’ve got superior genes.  Also, I got a Nuprogen  shot this afternoon, which will continue daily.  They will stimulate stem and white cell production.  I may experience some lower back aches as a side effect.

Here I am, roaming the halls to get some
exercise.  I'm masked because I am now
neutropenic (very subject to infection)

I have done my share of reading and watching television / movies.  Having all the available options makes a BIG difference.  It would be a challenge to stay cooped up for multiple weeks without such things.  I have the guitar here, but haven’t really felt up to doing anything on it yet.  I have played the harmonica along with Sami on the uke several times.  The train watching has been limited, as I have to stand up to see out and down well enough to watch.  By the time I am aware of a train going by, it’s often half by.  I may need to do a couple of dedication sessions.

The staff, without exception, has been really great.  I’m sure that has been a big help in making this a more tolerable experience.  I do look forward to breaking out of the ‘pen’ soon, however, and being in my own familiar surrounds and not tethered to equipment.  I probably won’t feel much better for a while, but we’ll deal with that.

Thank you all for all of your supportive thoughts and comments!  They mean a lot to me and have helped me deal with this.