Irene B’s Update

I think it is safe to blog now … hopefully I have done my disaster of the day.
If you don’t like the ickier first part, there is lighter stuff near the end.

Part 1 - Daily Disaster
I noticed the dressing on my pick line was still seeping blood, so I call the infusion nurse and they said come on in and they should change it, it needs to be dry.  Ed and I decided to combine errands so he dropped me off in front of MD Anderson.  While he was there (thank goodness) I stepped onto the curb just like I thought I was a normal person, and ended up on my knees and hands due to the steroid muscle weakness.  I couldn’t get up .. but of course Ed got me up.  The next thought is that this is a very very bad idea if you have bleeding issues (and who wouldn’t with low platelets and blood thinners?) and virtually no immune system.  I could walk fine and had done no serious damage… minor abraisions on one knee (blood clot side) and super slight abrasions on one hand …and wouldn’t have thought anything about it … except for those other facts.  Of course, they don’t have a minor emergency center there and I certainly wasn’t going to emergency room for that.  The diagnostic center felt sorry for me and gave alcohal wipes and band-aids and I carry triple-antibiotic ointment and band aids.  I went to the restroom where the have lots of anti-bacterial soap and washed it well and doctored it up right away.

Next I went to get my dressing changed which by now was bleeding a little more impressively. I noticed the one knee was starting to swell a bit so I mooched an ice pack (OK she didn’t have an ice pack but she filled a glove with ice and put a wash cloth around it for me.) So while they doctored the pick line insertion area, my knee was chilling.  She gave me special anti-bleed powder and a compression dressing and so far so good.  I talked to my doctor’s PA about the fall and after asking me lots of questions we both think I am fine … but we verified I had Leviquin (a good anti-biotic I had left over from pre-transplant) so if I had the least sign of infection I could start it immediately.  So I may have  been lucky on this one.  Until I recover from the muscle atrophy no steps or curbs without a rail .. I should walk around and use the wheel chair ramp.  That’s OK, I need the exercise.

Part 2 - Life here
On a lighter note .. Ed and I are getting this infusion routine down .. and both of us got reasonable chuncks of sleep last night.  Things always look better when you have had sleep.  We also figured out if we take the next med out after the refig right after the last infusion and put in our softside insluated lunchbox it is about warmed up for the next infusion.  So that eliminates the 2 hours before step.  We had been using the lunchbox during the infusion for me to put the infusion bottle in and hang around me neck, so I didn’t forget it was attached and try to walk away with it hanging … which wouldn’t be pleasant. Ed, bless his heart, just got me a new purple water bottle holder with strap today. It is much more convienent and way cooler looking! Also, I am so glad Ed can be a “cheapskate” and wears in socks until they are way stretched out and holey … the tops of stretched out socks make  wonderful sleeves to support the pick line (hold the end up out of the way) and he had two pairs to donate to the cause.  Am I lucky or what???

I have good news … Ed is “out of the closet” … the closet is way too small here.  Now he is “Living in the Bathroom”.  OK, he doesn’t have a full office in there, but the strongest internet connection in this hotel is in our large bathroom next to the bathtub. Luckily I have been doing OK from one of the chairs. Ed temporarily moves our little folding table, the roll around chair and his computer in there when he needs better access or just wants to hide.  I also have successfully used that room as a phone booth when Ed is trying to watch TV.  You just have to get creative.

Now if can just avoid disasters until I see the doctor on Monday. I know you are with us in wishing/praying for a turnaround on the numbers and news quickly. Drink, drink, drink (water), Walk, walk, walk. Die, CMV, Die! Go, platelets, go!  Irene