What a drag it is getting old....
My dear mother is having difficulty with her memory and getting the right things into her purse, though she is perfectly lucid, even erudite on a wide variety of topics. This is the woman who gave me life and took care of me when I was too little to do so on my own. This is the woman who served on the Glencoe School Board and twice on the New Trier School Board and the committee to interview and select a new Rabbi for her Temple. Ohhh my, my dear mother. sigh.
My dear wife, continues to suffer under the drag of Graft vs. Host Disease. Her mouth hurts. It is hard to eat. Even Key Lime pie is too "sharp" in her mouth. Her beautiful Scots-Irish skin is plagued with rashes and scabs where the tiniest bump creates bruises that later bleed. The surface of her eyes are again roughened up and hurt. Only her scleral lens are protecting her from the pain that is difficult to bear when she takes the protective lens out. The eye surgeon says her cornea graft will fail sooner or later and Bonnie will have to have another cornea and lens replacement to save her eye and hopefully give her decent sight in her left eye.
Bonnie saw the Graft vs. Host dentist and mouth specialist at Brigham and Womens Hospital 4 months ago to have the sores in her mouth evaluated and treated. She had no cavities at that visit. She returned to see him yesterday and she had 10 cavities, mostly where her gums and teeth meet, and a few under gold crowns that were solid for years. Bonnie's dental work will require 4 two hour appointments over the next four weeks to correct. Due to Graft vs. Host Disease of the mouth and the anti-immune drugs to treat the GvHD, Bonnie developed more cavities in four months than she has had in the previous 64 years of life. And Bonnie has been swishing her mouth with Flouride every day. Arrrrgggggghhhhhh.
It is a challenge to know which specialists to see to stay ahead of the effects of her GvHD, much less to get appointments booked in time to save Bonnie's health. We must find a real effective cure for this GvHD with Dr. Cutler's help. There is a promising trial, but it is over now. We shall see what we can do.
In the next four weeks Bonnie has to have neurophysiological and psychological testing, bone density testing, pulmonary function testing, an echo cardiogram, more blood tests for liver function, kidney function, vitamin D, calcium, and the rest of the electrolytes she needs for proper heart and brain function. She has to see a GvHD dermatologist and a nutritionist and then a rehabilitation and muscle function doctor. I am sure I am forgetting some of the doctors on her dance card.
We have to get her patient records from 2 hospitals, and several clinics and two pharmacies and pack to move by July 19 th.
Today we saw three eye doctors, who each did a different exam and the Lance Armstrong Adult Survior Bone Marrow Transplant Nurse Practioner who reviewed Bonnie's entire medical history since her transplant. That took nearly two hours.
It was tiring just thinking through all of the issues and appointments we have to attend to.
And of course, Bonnie being Bonnie, we just went on home and chatted about the grandkids and the Buddhist Nyingma teacher / monk I met in Palo Alto and how much we are going to enjoy writing our book and being in North Carolina.
It is now clear that we will have to return to Boston every 90 days for checkups and continuing treatments.
Our Bonnie never ceases to amaze me with her equanimity.
as ever, only with more grey hair /Daniel for BanD
Your comment about getting old is so true. But it's more "draggy" for some than others. My dad, who was a very chipper and pretty healthy sort, characterized it as "hell". Speaking of drags, this GvHD is a big one. Just thinking of all the docs and procedures Bonnie has to see/go through in the next few weeks (with Daniel by her side) makes me weary. Bonnie's indomitable spirit never ceases to amaze. This will be the focus of my prayers for awhile - that Bonnie may continue to be strengthened and sustained by the Spirit, and that all who cross her path will know that spirit/Spirit, too.
Love to you both, Margaret
Posted by: Margaret Irwin | June 28, 2008 at 11:31 PM
Did either of you ever read "Grace and Grit" by Ken Wilber and wife Treya? It is a story of their journey through breast cancer diagnosed shortly after their marriage. In the end she dies but in it is a powerful spiritual awakening. It is as if she were polished to pure light, often through the pain of anguishing treatments. She too went through a transplant, treatments in Germany, many spiritual practices. I'm sure you both know of Ken through his profuse writing in transformational psychology---but for me this is by far his best work. It is all written through their journals throughout it all.
Bonnie's latest struggles with her teeth and her eyes and mouth bring it to light. I just want to scream "ENOUGH". It is so unfair. Reminds me so of Christ's journey. I hate it!!!!
We are on our journey as it becomes more and more likely that our beloved son Nate will face jail on July 14th---his best shot may be a long term diversion program. Surreal.
Daniel----I am touched by your writing of your mom. May her transformation be gentle and easy whenever it is her time. my best to all, betsy
Posted by: Betsy Hall | June 29, 2008 at 12:13 AM