Bonnie Recovery

Back in Cambridge

We left NC Saturday afternoon and drove home to Cambridge, stopping overnight in Northern Virginia.  No stop at IKEA on this trip.  In the middle of the Labor Day weekend, the roads were empty, at least going in our direction.  It was one of our speediest trips yet.  We were making such good time, we decided to drive by our old house it West Hartford.  It looked terrific.  The driveway we put in nearly twenty years ago has aged very well.  We also ate at what we thought might have been our favorite Vietnamese restaurant (it wasn't). 

I saw Dr. Cutler yesterday.  My blood counts were good except that I'm low on "antibodies."  I'm to get a monthly infusion of hemoglobin.  I'll be seeing Cutler monthly for a while.  He said my "hay fever from hell" is actually a sinus infection and gave me an antibiotic for it.  This will be my third round of antibiotic for this same problem; I hope this one works.  I am so tired of blowing my nose and coughing.  This is a "disease of the living," I feel I shouldn't complain about something so minor, but it is another irritation in my long history of feeling not well.

This is orientation week at EDS.  Today I paid all my bills and tomorrow I can get registered for my two courses.  Chapel has started.  I missed the welcoming Eucharist because I thought orientation was next week, but I plan to be there for morning prayer tomorrow.   The weather  has cooled a bit reminding us that we are starting autumn in New England. All around me I'm being called to rejoin life.  I'm moving, slowly, but surely toward that new life.

Bonnie for BanD

Life One Year after Bonnie's Bone Marrow Transplant.

Well, we have made it to the magical ONE YEAR mark since Bonnie's Bone Marrow Transplant August 31 of 2006.

Our medical lives were supposed to be "all better" by now.  On the other hand, life after years of intensive chemotherapy and dramatic medical proceedures is rarely "as advertised". 

Bonnie is putting a good face on how she is, and while she IS better, better includes vomitting several times a week, and having her RESTING heart rate reach 120 beats per minute, both for no apparent reason. 

When Bonnie is not taking care of her grandchildren, she sleeps as much as 18 hours a day, and is often fatigued by simply putting the dishes away in the kitchen or folding some laundry.  Life is still very up and down.  Bonnie is amazing in how she simply goes with the flow, though from time to time, she seems to tire of this marathon.

This week Bonnie restarted school as a final year student at the Episcopal Divinity School seeking a Masters of Arts and Theological Studies.  Bonnie did all of her reading and wrote her first paper today, while waiting for an emergency call back from our doctor.  We had to page him due to her nausea, and insanely high heart rate and shortness of breath.

Our doctor did not return 2 emergency pages.  Apparently he forgot to check out for his week of travel / vacation.  I am not amused by the systemic and grave error where a DFCI doctor does not return emergency pages even though the page operator promises a return call shortly, twice, over a three hour period of time.

You can bet, that I have DFCI looking into how this was possible, and promising to call me by Friday to tell me how this has been corrected so it will never repeat. 

My advice to you is = do NOT GET ILL.  If you do, do not rely on promised call backs etc.  Be vigilent.  Your life is in your own hands.    

Patience for Recovery

Thank you for your various expressions of shock and sadness that my weakness continues. It has been indeed a shock to me to find myself so weak a year past transplant. I was much stronger when I was in NC in August; I attribute this to the healing effects of grandchildren and the roaring of waves from every window in our beach house. When I returned to Cambridge, it seemed that I had little to look forward to other than cleaning and taxes, oh so depressing. And so I gave in and began to sleep more and more. I spent many days asleep until 2 or 3 in the afternoon and then back in bed for the night at 6. That schedule doesn’t leave much time for living. It is hard to think how I could sleep that much. But being up, even sitting up in the living room, has actually been painful. Moreover, I wasn’t awake enough to eat what I need to stay alive; my calorie count dropped below 500 as it made me nauseous to eat anything. Daniel was wonderful. As you can tell from his writing, he was very scared for me. Nonetheless, he hung in there, cooking and even taking back the chores that I’d started to do like emptying the dishwasher.

This week I am doing better. I had my second acupuncture treatment on Monday and have been more energetic ever since. My doc is also a psychiatrist; we discussed the possibility that I’m clinically depressed, but concluded that I’m not since I WANT to do things that I’m too tired to do. I’m confident that the acupuncture will help. 

I’m now in school. I have two online courses. In my Intro to the Hebrew Bible, I have online dialogues with other students and also write about how I’m interpreting scriptures. This week’s unit study is the first eleven chapters of Genesis. As a way of shedding light on the role of the authors, we were invited to compare the Biblical version of the creation stories (the two of them) with how we would write the creation. In particular, we were asked to examine how God is characterized in these stories. If you haven’t read Genesis recently, be prepared for a pretty scary God portrayed there. My spiritual director, William Barry, talks of how most people are scared of God and cannot understand the possibility of God as friend. Well, I can certainly see why that would be given how “he” is described in the creation. Apart from the sexism and portraying women as the source of evil found in Genesis 2ff, God is shown as a jealous and impetuous as well as violent creator. I enjoyed writing my own creator story and applying my story-like understanding of string theory to a creation narrative. I’m attaching a copy of my story with apologies to those of you who have a more sophisticated understanding of contemporary physics. Here is the link:  Download my_creation_story.doc . I encourage you to read Genesis and to write your own story; it is a wonderful way of seeing what you believe about the world while being playful and indulging your child-like notions.

My other class is a continuation of the Spirituality and Healing course I started last fall with Kwok Pui Lan, one of our fine professors of theology. The course will help me focus on the project Daniel and I have started to write about my experiences in a way that can help other people who are patients. It will also be a good writing workshop for me in helping me deal with the trauma that this illness has been. My next unit is on Chinese approaches to healing; it will be good background for my acupuncture and also the Qigong that me doc insists that I start. Daniel and I have a DVD of Qigong practice that hopefully both of us will start to use.

As you can see from what I have written, I am more optimistic; I’m still really tired, but I have more hope in my life. I saw Dr. Rosenthal today; he is the hematologist I first saw at the Harvard Clinic two years ago. He runs the clinic and also the Integrated Medicine program at Dana Farber. I’m fortunate to have access to a doc so knowledgeable about leukemia and also about alternative, especially Chinese medicine. He reminded me that I have been very sick and should not expect to be back to my condition two years ago. His prescription: food and Qigong as well as acupuncture. 

   

Energy and Overabundance

I’m now paying more attention to my energy levels than before. In the past year or so, my “energy” has been like an external force, most notable when its absence was like a foot on my neck and holding me down. I would gripe and whine about it, or rather the absence of it. Since reading about Chinese medicine, I’ve begun to examine what’s going on with me when I feel energetic and when I don’t. 

I’ve noticed that my Hebrew Bible readings are having a distinct and negative impact on my energy. Last week we were reading the first eleven chapters of Genesis. In them God is portrayed over and over as a capricious parent. The enthusiasm of writing my own creation story kept me from being caught up in those stories and my energy level was high. This week we finished reading Genesis (chs 12-50) and encountered all those family stories of deceit and destruction. My energy level took a dive, and I haven’t done any writing that energizes me (maybe this posting will help). Daniel and I have also been watching Ken Burns’s documentary, The War. I’m amazed at how much I didn’t know about WWII. When I first start to watch, I find the experience relaxing, even comforting. I think this must be because good documentary is so engaging. As the two hours goes on, however, it becomes depressing. The mud and the blood become almost too much for me; the numbers of casualties are staggering. What a saga of human cruelty as well as courage. It could be right out of Genesis. 

My professor for the Hebrew Bible course, Dr. Gale Yee, introduced our study questions with an observation I won’t ever forget. She observes that when she hears people talking about the Bible as a guide to family values, she wonders what Bible they are reading. These “family values” readings are particularly potent in a week when the Episcopal bishops have been struggling with how to preserve communion with the larger church while being consistent with their own values about human rights.

I’ve found solace this week in my continuing readings about Chinese medicine. Some of this comforting feeling comes from engagement in learning new (to me) ideas. I think most of the feeling comes from a belief that I can be healthier and that I’m learning how to do that.