Bonnie Recovery

Red Sox Fever

Daniel and I are doing what everyone else in Boston is doing these days, watching the Red Sox in the baseball play offs.  Go Sox.

We are planning out next trip to North Carolina.  It is our intention to drive to NC, leaving here on Oct 19th and arriving in time to go to Lucas' second birthday party on the 21st.  I'm looking forward to the festivities and also to going trick or treating with the kiddos the following week.

My doc insists that I cannot go until Nov 27th before seeing him.  He thinks that I may have abscessed sinuses and insists that I see an eye, ear, nose surgeon as soon as possible.  Scheduling a time is proving to be most difficult.  Daniel and I've decided that the thing to do is to fly back for appts with Cutler and the Nose Doc.  I'm hoping to get both docs scheduled the first week of November.

Mostly my blood counts are good.  The exception is that my white blood count is very very high, mostly lymphocytes.  The presenting problem for my leukemia was very low white blood count;  there are forms of leukemia characterized by high white count.  The count is too high to ignore.  I also continue to have a very low count of what they call "antibodies," and I need monthly infusions of gamma globulin.  It is a bit paradoxical that I'd have such high levels of white cells and yet very low levels of antibodies. 

It seems urgent enough that we listen to our doc and schedule a trip back here in the middle of our trip. I dread seeing the nose doctor since those guys do some pretty painful procedures.  And, of course, I am anxious about having abnormal counts with no good explanations for them. 

Assuming we pull off this little trip back here and then returning to NC, we plan to drive directly from NC to Chicago to see Daniel's Mom for Thanksgiving.

My general state of health continues to be about the same.  I'm strong one day and then weak another.  I'm doing Qigong, Chinese breathing exercises, every day.  They seem to be helping me already, though as I said, on some days I just can't seem to get out of bed.

That's all the news from here.  It is mostly a story of "more of the same."  This week we enjoyed a visit from Daniel's sister Bev and her husband Alan. And, of course we are enjoying regular visits from Jackson who continues to be enchanted by all his cars.

Love, Bonnie for BanD

Chinese Medicine

This week I finished the Chinese medicine unit in my Spirituality and Healing independent study. I wrote an essay about my experiences with Chinese medicine and realized (1) how many experiences I’ve had and (2) how much I have been helped by acupuncture and Qigong. It was my acupuncture doc, Ed Weiss (also a western trained doc) who saved my life after my 2002 experiences with chemo therapy. While my western docs were telling me that I’d be getting better soon, Ed looked up my medications and found that I was being poisoned by too large a dose of heart medication. Lyn Bishops came to our house the night before I checked in to Stanford Hospital; she gave me coaching on breathing exercises that really helped me keep up my strength.  Chinese medicine can be so subtle that it is easy to forget to do for those of us who weren’t raised in a Chinese culture. I do not know why last year I ignored practicing the Qigong breathing that had been so helpful to me in California. Well, I feel we are back on track now. The acupuncture treatments I get on Mondays are helping with my stamina. Daniel has joined me for nightly sessions of Qigong using our tape.

This week I turn my readings and attentions to “Disease as Trauma”; my goal is to revisit, with a healing attention, my various traumas over the last five years of illness. I want to inspect why I call my experiences “traumas” and how this characterization can help me get beyond my current phobias (for example my fear of the nose doctor and my despair at every setback in strength). I have been reading a great book called Writing as a Way of Healing. The author, Louise DeSalvo, cites literature on the healing value of keeping a “process” journal; the key to healing effect is to write both about traumatic experience and also what one felt about it at the time and since. Over the 23 months that I’ve been writing this blog, I’ve been gratified by the healing effect it has had for me. Time and again I have been able to pull myself from despair just because I had some place to “talk” about what was happening with me and how I was feeling about that. Looking back on some of my entries, I can see that when I covered up my feelings and wrote only about what was happening, or when I used the blog to vent feelings, I did not experience the relief from despair that I found when I wrote more. It has had a miraculous effect in our family; the times when I was not able to write were the times Daniel most needed the lovely “listeners” that we find here. Often we have found that the blog tells us more about what is happening with the other than we learn in our conversation. We are so grateful to you for being the loving listeners that you are.

Still more patients please....errr uhhh patience I mean

We are in NC.  Daniel did not feel well enough to drive as we'd hoped Friday before last and so we left Sat morning.  The trip was tiring, but altogether doable.  However, we have both been sick since we got here.  We have only seen the grandchildren once and then for only a couple of hours.  If one has to be confined to bed, this is a great bed to be in, with its panorama view of the ocean. 

We had planned to fly back for a few days doctor visit next week, but now we are thinking of packing out of here Tuesday and heading back to Cambridge until I'm better.

I have all the symptoms of a pretty bad relapse of graft vs. host disease.  The intestinal disruption is particularly uncomfortable.

Once again, the best laid plans . . . \

Well well well, you can never tell. Here we go again.

Two weeks ago we were planning our future - moving to the beach house on Oak Island, NC at the end of Bonnie's EDS school year. 

Now we are racing back to Dana Farber to get Bonnie treated for the return of her Graft vs. Host Disease. 

Bonnie is sick and fatigued.  Her stomach and intestines are under attack again.  Her rash is spreading.  Her eyes and face are swelling.  We have an emergency appointment with Dr. Cutler when he returns on Friday.  We have to pack up and drive 18 hours to make it back. 

The good news is that Bonnie is not running much of a fever.  I am recovering from the cold and sinus infection that settled in for a month.  I am in condition to drive and take care of our Bons.

People have asked how I am doing.  I am remarkably happy and peaceful, even though we have both been sick.  I had scheduled a trip to California for some oral surgery and to see friends and my beloved Pacific Ocean at Bean Hollow.  If you have never been to Bean Hollow, go;  Exposed there is Beauty, Creation, God (or whatever you hold to be the source of existence).  I am altered whenever I go and hangout, whether ocean is lit by sun or the moon.