Share. Connect. Love.

There and Back Again (with respect to Mr. Tolkien)

Believe it or not, I’ve been home 5 weeks already. It’s been absolute heaven. The hospital and apartment trauma are starting to fade. If it wasn’t for the facts that I don’t have hair, take multiple pills a day, and have very little balance or muscle tone, I might be able to forget my recent Stanford foray. I really am doing great.
 
I have monthly checkups with my Stanford and Kaiser doctors and biopsies every 6 months. It’s like a tape recorder: the doctors ask exactly the same questions. “Any skin irritations? Any itchy eyes? Anything else unusual?” At this stage, they’re concerned with keeping me free of ‘GVH’ or graft vs host disease. I’ve already had one bout with ulcers on my colon so they want me to be vigilant. I’m more concerned that I have no vaccinations against anything and so have put a kibosh on any interaction with school age children.
 
After keeping the Gap in business, I’ve been spending most of my time creating a new ‘room’ on my deck and joining fun Meetup groups. All those steroid-fueled research hours on the computer in the apartment are coming to life. It’s transformation after ten months of focusing on nothing but survival and medical s*!#. Come visit, sit on my new deck, and let’s go to great (but not crowded) concerts and events!
 
I guess almost-normalcy is boring because I don’t have anything more to report. I just can’t thank all of you enough for your love and support. It has meant the world, and I’ll be looking for ways to pay it forward.
 
With gratitude and a full heart,
 
Joanne[...]

News from the Home Front

Hi everyone. After 3 ½  months away, I finally got home Tuesday afternoon, thanks to a smooth convoy from Menlo Park with Pat and Phil Williams. Thanks again, guys! You are the absolute best.
 
I ended up coming home alone without my caregiver, and it has been completely wonderful puttering around the house on my own with Sam, putting the place back together and resetting the energy. I’m clearing out old stuff, reorganizing drawers and closets, and planning new deck furniture. (By the way, the new dishes are gorgeous. 😊)
 
I am recovering so much faster than anyone expected. This week, my first week back and alone, I’ve been driving, grocery shopping and doing laundry without any trouble at all. There was no way I could have gone to Safeway, Trader Joe’s and Whole Foods in a row back in January. Bone marrow transplants are hell in a hand basket but truly miraculous when they work.
 
Send some gratitude right now to your red blood cells. You gotta love not being anemic!
 
XXOO,
Joanne[...]

Movin' On Up

Hi everyone.

I apologize for the month delay since the last update. I just couldn't seem to find the motivation to write while feeling so sick. The nurses and doctors tell me that my extreme version of a bone marrow transplant is one of the hardest things that our bodies can go through. I apparently did very well compared to others, but boy, I believe it.[...]

10 Days In

Hi all. Seems impossible that I’ve  been in the hospital for 10 days already. Everything so far is going as planned. The transplant yesterday - in this case, a fancy word for an IV blood transfusion - was long (6 hours) but went off without a hitch. Nancy Sheppard and Joanne Sheehy helped me pass the time.[...]

Day 1

 

End of day 1. This will apparently be my easiest week so I should enjoy it. Still very clumsy in my new environment. Have hair for 2 more weeks. The nurses are appreciating the travel pictures on my digital frame and my matching pink slippers, pajamas and bed jacket. It’s a sickness.[...]