Bonnie Recovery

Ernesto from my hospital room

I started this blog entry on Aug 31^st; I’ve been unable to post until now because of connectivity problems. Daniel made valiant efforts to seduce the wireless signals outside my window to come in, but we have given up, and I’ve gone back to dial-up. I have a rant about dial-up services, but I’ll spare you that now.

Here is what I wrote on Aug 31:

Thank you for your blog comments, emails, and phone calls. I am awed by the many many communications of love and support I've gotten from you.

Today I’d expected to be blogging about the stem cell transplant. Because Daniel has written an amazing moment by moment account of that, I don’t feel there is much more to say. I am feeling better. 

Labor Day in the Hospital

I knew the moment I woke up that Labor Day ’06 would be a good day for me. The sky was blue for the first time in a week. Ernesto had moved on his rainy way. Crepes from the “nutrition dept” had already arrived in my room. The nutrition dept offered lobster salad and watermelon as a consolation for those confined here on a sunny day; I had ordered both for lunch and for dinner. Most important, I was feeling good. No longer was my body aching when I turned over; I wanted to get out of bed. When you’ve had a week like the one I just finished, walking across the room is a Labor Day trip. I had prepared for a special Labor Day journey … to Hogwarts. Finally I had converted the seventeen CD set of Half-Blood Prince to iTunes/iPod. And thus it was that I spent most of the hours of the day listening to Harry Potter 6.

I was also able to travel vicariously with Jen, Scott, Zac and Luc as they went out for their first ride on their new boat. I don’t know much about boats, but I understand that this one rides high in the water so that they can dock it at the end of their street and take a short ride to an uninhabited barrier island where Jen and boys can play while Scott fishes from the boat. How cool is that! As she did on Labor Day, Jen sent me pictures via cell phone many times through the day. When I was at Interval, we understood that phones would, sometime around 2002, become instruments for photo exchange. I didn’t understand then how satisfying the experience would be. I feel like the nursing home grandmother character in the informance (informational performance) we did to explore the future of technologies through fanciful enactment. Yes, indeed I’m living that fantasy.

“Don’t Forget Your Spunk”

On my last trip to Dana Farber I met a man who had been in remission for 14 years. I’d never heard of anyone with a relapse after such a long remission. We had a good talk, commiserating about induction chemo (he’d just finished his first round of it). As we said good-bye to proceed to our infusions, he called after me, “Don’t forget your spunk.” How good to be reminded.

The last week I’ve been feeling new sensations, some of which are painful and I’ve let myself get into a “disabled mentality.” Indeed I’ve forgotten the spunk which has carried me this far. Sometimes angels speak to you through the most unlikely mouths.
I’ve only been out of the hospital five days (Sept 6^th), but it seems like a long, long time. My hospital memories are fading fast. I was greeted by a great welcome home sign by our upstairs neighbors Christi and her son Sam. I have been so tired that I didn’t get a picture of it until the balloons shrunk. I’ve slept much of the time I’ve been home. 

I get out at least twice a day to go to the Harvard infirmary where I get infusions of antibiotic. I have my own room, at least until students return for the fall term and all the beds fill up.  The nurses here are great to me. It takes a couple of hours for each infusion. I get a pretty good wireless broadband signal from some open Harvard server that allows me to work on my BLOG while getting the infusion. I also listen to Harry Potter 6 with headphones (until that puts me to sleep).

My goal is to walk to Harvard Square by the end of the week, but now it is all I can do to drive and park here. I have two modes: “sick feeling” and “well feeling”; I’m in my sick feeling mode now. I need my spunk back. 

Frisky Daniel is also under the weather these days. He has quarantined himself in the guest room until his cough is gone. It’s times like these that make us grateful for our ultra simple life. 

The doc is being very strict with my own reverse quarantine. I planned to start Chapel attendance this week; no way, says the doc. Visitors have to wear masks in the house. I can’t go to the supermarket even with a mask and gloves. I’m hoping that all these odd feelings I’m having mean that my biology is starting to change and that I’ll soon be building blood from my new cells. As soon as I start to have blood count, the doc says I can go to Chapel at least. Let’s pray for that.

Love and peace, Bonnie for BanD

Changes to BLOG

Welcome to the new BLOG format.  The new left column allows you to click to previous entries, by month or category.  Each month links to a Word doc with summaries of the entries and links back to individual entries.

GRAFT!

My blood tests today showed that my new stem cells have engrafted.  In three days my white blood count went from 600 to 18,000.  I've been trying to get my absolute neutrophil count up to 500 for almost  a year.  Today my neutrophil count is 11,000.  Those shots I've been taking at Harvard zoomed my counts up, way beyond normal, but that couldn't have happened without cells to make all this blood.  The doc pronounced that I have a strong graft of donor stem cells.  Given my history of chemo failure, this is really impressive on day 13 of my transplant.

My platelets went from17 on Sunday to 191 today (Tuesday), again a sign of a strong graft.

I still need to be careful in wearing my mask and gloves because, while I'm no longer "immune compromised," my immune system is still "confused."

It will take a few months before my red cells are type A rather than O.   My blood response is so good we will do the bone marrow biopsy sometime around Oct 6 rather than Sept 29th as we had planned.  Daniel hopes to go to the Interval Picnic in California on the 30th.

As friend Donna Geiger says, "GLORY BE!"  Propects for a cure look good from here.  Thank you for all your prayers.  With only a 15% probability of engrafting, I feel the strong force of the Divine on my shoulder, and God laughing that I might doubt She could do this.

Love and wonders, Bonnie for BanD

We are brewing along here

I went to the doc today expecting to have a weekly meeting with him. On arrival I learned that my appt was not until next week. There was a bit of confusion about when I was supposed to come, but the doc said that I only need to come every other week. I had a blood test anyway; it confirmed that my counts are continuing to improve. My white count is now in the strong normal range. Altogether the counts look great. I continue to brew cells on a good schedule.

Still improving; still sleepy

Doctor’s reports continue to be good. At my bi-weekly visit yesterday I learned my blood counts were mostly normal, though my red count is still low. When I complained to the doc about being too tired, he just smiled and assured me that being tired is entirely normal. “Your body is hosting a battle, and that will make you tired.” My red blood count is low enough to keep me tired, but not low enough to need a transfusion. 

Daniel and I wanted to celebrate continuing good news when we left Dana Farber. The doc was insistent again, “no champagne.” We decided to drive to Maine. It is still a bit early for leaf color, but we thought we’d check it out. We needed to get out of the house for a while. We drove as far north as Kennebunkport then thought we might drop in on the Bush’s. Turns out they were still in Houston, so we stopped by one of their favorite lobster places. It was a good place for me to eat. I got a whole lobster so hot that I could scarcely hold it to crack it open. We ate outside on a bench with paper plates and plastic forks. It satisfied my craving for a bit of restaurant food without going into a restaurant or eating food that had been “prepared” outside our own kitchen. I think this celebration was even better than champagne.

Days are pretty slow around here. I seem to be sleepy all the time that I’m awake, making it difficult for me to have conversations by phone or in person.  I’m so looking forward to awaking up!

Bonnie for BanD