Share. Connect. Love.

Posted 2019-12-14T03:38:00Z

Back to Stanford

Hi.

I will write more later but wanted to let everyone know that I will be checking back into Stanford Hospital tomorrow afternoon for 1-2 weeks. They need to fix the graft versus host disease in my gut as well as reduce the myelofibrosis, which has increased. I don't know my room number yet, but I will be easy to find in the BMT unit or via text.[...]

Posted 2019-09-23T00:36:18Z

Three Months Later...

Hi all,
 
I just reread my update from June, and I had to laugh. I was so energetic and enthusiastic. Shopping! Decorating! Meetup groups!
 
Ah drugs.
 
Now that the steroids aka amphetamines have worn off, life looks a bit different. Don’t get me wrong: physically, I’m still getting stronger all the time. My blood counts continue to improve, and my spleen is no longer enlarged. I have pretty cute, very short gray hair. I’ve graduated to the fast walking group, and I even drove to Tahoe last weekend. (Thank you Laitys.)
 
However, I spend a significant amount of time tending to my touchy stomach and feeling tired and a bit depressed. I haven’t shopped, fixed up the house or gone to a Meetup group in weeks. I can’t even commit to a weekly one-hour class. When people ask me what I’m going to do with my new life, I have no answer. I just know what I don’t want to do right now, i.e. anything resembling work and stress. Basically, I’m a slug.
 
My Kaiser psychologist tells me that I’m just deeply fatigued in body and mind from this massive thing that I went through. Survival necessity and steroids were simply masking it for a while. He correctly surmised that I like projects and has suggested that I focus on Recovery for the next 6 months. I like this project since it gives me complete license to exercise moderately, nap, and stare into space.
 
My favorite thing to do, besides nothing, is to hang out with one or two friends with whom there is no need for small talk or effort. It’s just easy. So, please continue to call and make plans. I can drive to you now. ๐Ÿ™‚
 
Being on a deserted tropical island with servants and a special someone also sounds perfect at the moment. Any suggestions?
 
Until next time,
 
Joanne[...]

Posted 2019-06-27T00:03:43Z

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[...]

Posted 2019-05-18T15:22:00Z

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. ๐Ÿ˜Š)
 
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[...]

Posted 2019-03-12T22:46:00Z

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.[...]

Posted 2019-02-14T00:39:00Z

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.[...]