Bonnie Recovery

Hello. August

Oops, I wrote this in word last Friday, but then couldn't get into Typepad for some reason.  Daniel had the same problem and straightened it out with them.  Daniel arrived Saturday morning on the red eye from SFO via Atlanta.  Lucas came to the beach with us.  It is the first time he has been here without Zac.  We have been playing match box cars many hours a day; Lucas is a great layout designer for the long tracks we use to race the cars. 

I heard today that my second MRSA test was negative.  I am clleared for surgery.

Here is my post anticipating August >>>>>>

We are entering our eighth month of 2009.  The cliché fits so well:  where has the time gone.  Today is my “pack out” day.  Daniel arrives at 9:30 tomorrow morning from California.  Lucas and I will pick him up and head for the beach, possibly stopping at Costco on the way.  Daniel and I are looking forward to being together again.

Zac arrives from his visit in CT on Monday to join us there.  These kiddos spent a week with Scott’s family at the other beach house this summer.  They are used to going to the water everyday, most all day.

I’ve been thinking how I get over the soft sand dune to water’s edge with them.  I announced to Jen and Scott that I was going to go to (a store named) Play it Again Sam’s to buy a pair of ski poles to help me get over the moat to the beach.  They laughed and talked about how funny my images are.  I forget that the used equipment store is called Play it Again SPORTS.  (I was close.)  I think of the barrier between our house and the water as a moat, it is a depression that gets water on a stormy day.  My thinking is a bit screwy; I seems to live in a metaphoric world, all my life, but now more than ever.  I did go to Play it Again Sports where they were able to find one pair of ski poles in the back storage.  I also bought a pair of used size 4 soccer shoes with cleats.  I hope that with this much traction I will be able to get over the moat.  We will need to buy an umbrella; I have LOTS of #70 sun screen.  Daniel will get beach chairs out there for me.  Most people just leave their chairs and umbrellas there overnight.  We moved to the beach because we love the water.  I am so looking forward to being “out there” again

I’m on my second round of antibiotics since coming here.  I learned my lesson (hopefully) last year.  I take my temperature several times a day.  Last week started by my being so tired I could hardly function.  Then my throat started getting sore. On Saturday I had a temp of 99.5.  I started taking Cipro.  Abi and Luc had very runny noses.  I had seen my doc on Friday morning and discussed my throat and tiredness.  On Friday afternoon Jen learned that there was strep throat reported at the Children’s Learning Center.  She took them to the doc at walk-in hours Sunday afternoon.  After sleeping 14 hours on Sat night, I slept through her visit.  At first the kids doctor dismissed their symptoms as “just a cold.”  Jen insisted that Luc be tested for strep throat, though he wasn’t even reporting a sore throat.  They both had Strep; each got a shot instead of ten days of antibiotic.  By Monday, after two days of Cipro, I my throat was better and my energy was much improved.  When I think that I had Cipro in my bag last year and might have avoided months of trauma, I am sobered. 

It took such an incident to bring home to me the reality of being immune compromised.  I’m mentioned in the blog over the last years that I “walk a tight rope” between too few drugs that would lead to graft vs. host disease and too much drug that leads to infection from low immunity.  I am so fortunate to have survived my own ignorance; now I am working to be more alert to the little sways that can push me off that tight rope.

Speaking of patient expertise, our book on that topic is coming along.  I’d hoped to have 300 pages written by now, but I’ve spent too many days asleep.  I do have most of two chapters done and a detailed outline.  With my sight returned, I’ve been able to do the reading I need to do.  I’m the proud owner of a new Macbook Pro.  Daniel found an interesting program for authors called Scrivener.  It has much of what people who do these long research/writing projects need: a way to relate research and text.  It seems to offer good support for people like me who write in chunks and then organize them.  I’ve often compared my authoring as creating a quilt, first developing an overall design, then making the pieces randomly, and finally putting them together and securing a backing to hold it together.  That is pretty much what we are doing.  On Monday before my incident last October, Daniel and I developed an overall conceptual schema while driving home from Mary’s ordination.  I had some time to put that schema into a PowerPoint drawing before the incident.  I worked on fleshing out the concepts, mostly in my head, over the months in the hospital.  This summer I worked on refining the overall design.  Daniel has worked on the web site that will accompany the book, both extending its usefulness and providing an avenue for marketing.  Over the last couple of days I’ve moved my Word draft into Scrivener so that we have a detailed outline in which to develop chunks of text and also attach research to be used whenever the chunks are written.  It is clear there is much to do, but it is happening.

I’m now off to do my packing and restoring the Pollard house.  I will miss the kids and the little cat that has kept me company.  Beginning tomorrow, I won’t be chasing a cat off my keyboard all day long; that will be a mixed blessing.  Lucas talks of time as something happening before GrandB came to live with us and things that happened after GrandB lived here. I expect I’ll always mark my time as before I lived with the kids and after.  I’m moving on now to the “after” time with the joy of hope and satisfaction, but also with some sadness.  Welcome August whatever you bring.

Love and peace,
Bonnie for BanD

 

Stuck on the NJ turnpike and on to Boston

We had a grand time with the grandchildren last week.  They keep me so busy that I don't have time to post or do most anything else.  We had Lucas for two days by himself, then Lucas and Zac were there two days.  We took Zac's  "family birthday party" dinner to Jen's house on Wed and brought all three kids back to the beach with us until Saturday morning.  On Thursday we crossed the dune (aka moat).  My snow ski poles and size 4 soccer shoes with cleats worked great to get me to the beach on my wobbly feet.  When I got tired of standing, I sat on the sand and was able to get up from there.  This is really a big accomplishment for a person who could not stand up from the sofa in May.  The kiddos had a great time in the water.  Zac will be ready for surfing lessons by next summer.  Lucas braved the waves with his buggy board more than ever before, and Abi went fearlessly into the water though she'd had a nasty stingray bite (sting?) only last week.  It was all great.  The week was enchanting for Daniel and me; it was a fine finale for my summer with the kids.

We are now on our way to Boston where I have been cleared for surgery Thursday afternoon.  After a short time at Zac's "real" birthday party (aka kids party) on Saturday we drove to Norfolk for a weekend with Sue Crommelin.  Sue preached at the church where she is interim rector.  The lectionary readings from John these weeks are about bread.  She read from the liturgy our EDS spiritual directions group did regularly when I was in the hospital; Sue told the story of our spiritual times during my recovery.  She drew from a similar sermon Mary Wetzel had done the week before.  It was wonderful for me to be with people at coffee hour who seemed to get so much from the story.

We left for Boston early this (Monday) am, but we are now stopped at a Honda dealer on the NJ turnpike getting our passenger window fixed (so it will stay up).  More later on the continuing saga ...

5:30 pm and on the road again.  We need a new part to fix the window, but the service people got it raised and took the fuse out so that it won't lower itself until we get it fixed.  It was great to have WiFi at the service shop.  I'm writing about being in the hospital in 2002 and how difficult it was to get online while in Stanford Hospital.  Now all my hospitals have WiFi of course; broadband is everywhere.  Yeah.

Daniel seems surprised at how strong I got while he was away.  I can walk barefooted now.  This is quite a breakthrough for me because I don't have to put on my shoes when I get up in the middle of the night to go to the bathroom.

Now it is Wednesday... We made it to Beanie's wonderful house in Wrentham MA about midnight on Monday after a stop in CT at a great NY deli in Vernon.  We collapsed until Tues morning when we made our way to the Mass Eye and Ear Infirmary in Boston.  I got my final clearance for surgery at 2 on Thursday.  Since they assume I have MRSA because I only had TWO  tests showing I'm clear, they have scheduled me last in the day so they can do an hours cleaning after I contaminate the room.  Because I will have a general sedation, I will be admitted overnight.  That is ok for us since I have an 8am appt with Dr Colby the next morning.  I may still decide to go to a hotel with Daniel overnight rather than the hospital. 

Broadband is not everywhere.  We were hours at the MEEI, no broadband.  How rude.  As Daniel says, they do no hospitality here.  Daniel and Eric Dishman, discussing health care delivery systems while Daniel was in Portland last week observed the almost unique situation of having waiting rooms at all.  Shouldn't a good health system be waiting room free?  What would it take to evolve to such a system?

Speaking of health care delivery, I am really mad these days at all the lies and intimidation around health care reform. 

Here is a link to the White House "Reality Check" website: http://www.whitehouse.gov/realitycheck/

And here is the Moveon.org piece from Health Care for America Now on some of the most outrageous lies: http://www.moveon.org/r?r=51729&id=16778-3151461-4JMsMJx&t=1

Please write your congressional representatives to support health care reform now.  I'm getting that feeling I had back in the Bush days when I felt our country losing rational sanity. 

Daniel may post sometime after my operation or it may be the weekend.

Love to you,
Bonnie for BanD

Bonnie's left eye reconstruction went well - sight coming soon.

We made it to Boston in time for Bonnie's pre-operative exams, though we were both with colds and tired from travel.

On Thursday Bonnie went in to Massachusetts Eye and Ear Infirmary for her surgery to remove her cataract and replace it with a plastic lens and to remove and replace her left cornea. 

The surgery took about two hours under a general anesthetic.  The surgeon told me that Bonnie's cataract was one of the densest, most opaque she had ever seen, and so Bonnie should have much better sight when everything in her eye settlles down. 

Bonnie's left cornea was replaced with plenty of stitches to hold it in place and then tissue from a placenta was placed over her eye to aid healing and her eyelid was sewn shut. 

Bonnie's eye lid bruised quite a bit during the surgery, probably due to the blood thinner she is on to deal with the blood clots she has had in her thighs. 

We are told that all should heal well and we shall see what kind of sight Bonnie has in a couple of weeks. 

In the meantime, we are sleeping a lot to recover from the stresses involved in getting to and through this long anticipated surgery.

I am wiped out.  I feel like I have made it to the end of an ultra-marathon.  I promised Bonnie I would see to her getting back up on her feet and being able to walk and see again. 

We are close to that goal.  I feel empty and like I have been running on fumes for many months. 

No reserves left to proof-read.  this is wsiwig.  what you see is what you get.

Good night.  /Daniel Shurman for BanD

No-Hospital Decade! Bonnie's post-op story

I write my posts off line.  We had some connection problems here today and it has ended up that both Daniel and I created posts (probably at the same time) about my operation.  Here is mine. b --->

My operation went well, or so I hear from Dr. Colby and the docs who assisted her.  I have an amazing black eye.  I'm glad she warned me about that before I saw it.  I had stopped my coumadin a week before, but some vessel or vein popped, leaving me a swollen and dark eyelid.  I may post a pictue in a new album I'll create.  I don't want to just drop a picture here because frankly it looks too scarey.  I'm wearing a patch so that Beanie and Daniel don't have to look at it.

We won't know for several weeks, possibly months, how much sight I will get in my left eye.  It is mostly closed as well as swollen.  When the doc removed the bandage I was able to count my fingers and also see the color blue.  Colby said my cataract was one of the worst she has ever seen (and she sees many).  It was not only thick, but dark brown; hence I've not been able to see anything blue in a year or more.  I've also been very light sensitive, meaning that we have been keeping out blinds closed with no view of the ocean.  Both Daniel and I will be happy to have our blinds open.  It is curious to me that with so much more light getting into my  eye without the cataract I am much less bothered by light.

I elected to go into the hospital overnight after having general sedation.  The operation was over by 3:30 pm, but I wasn't taken to my room until 8:30.  Half the beds were empty and so I don't know why it took so long to clean a bed for me.  I had a double room to myself; getting me a private room may have been the issue.  I said in Wednesday's post that Mass Eye and Ear isn't much on hospitality.  I found that in my hospital visit.  I was there primarily because my operation was so late in the day and my post surgery visit was so early the next morning.  I wasn't sick enough to be there. Most eye and ear operations are outpatient procedures these days; only very sick people stay over.  Hospital procedures are set up for them. 

I got up early Friday to have plenty of time for my 8 am appt.  A woman from food service helped by coming in to take my breakfast order at 6 am.  (The good hospitality at MEEI was the food: a great sandwich at 9 pm and breakfast at 7 am.)  I started to get dressed after the breakfast order and could not find the ONLY pair of slacks I'd brought, a pair I'd left on the chair so that the wrinkles would fall out overnight.  I then noticed that housekeeping had come during the night and made up the other bed in the room.  Where were my slacks?  I turned on the call button.  After 20 minutes, no response.  I headed into the hall in my open back hospital gown.  I was upset.  How would I get home without my slacks?  How could I go to my doc appt?  Who took my slacks?  I found a housekeeper in the hall.  She was entirely unhelpful, though she offered me a pair of hospital slacks.  I found a bin with dirty laundry in the hall and started throwing out sheets and stuff.  Hospital laundry is either very dirty or hardly used. Thankfully, this laundry was hardly used, folded blankets, etc.  On my second pass through the contents, I found my slacks, oh so wrinkled, but otherwise OK. 

By policy, I  was supposed to have an IV in my arm until discharged.  At 4 am Nurse Mary woke me up to check the IV; she found that it had popped.  Another nurse came in to install a new IV (this only hours before I was being discharged).  I refused the IV; nurse Mary confirmed with me "you are refusing the procedure"; I said "yes, I am refusing the IV."  "OK," she said.  One important practice I've learned over the years is refusal.  I think that my own assertiveness has evolved along with hospital policies about being more patient centered.  It seemed obvious to me that Nurse Mary had been trained that I could refuse and taught to confirm and document my refusal.  I've learned to listen to how much and what kind of resistance a nurse gives me when I refuse.  I sometimes consent.  I've noticed that my trust in the nurse is important in what I decide:  is the nurse speaking to me of real dangers and concerned with my interest, or is the resistance because of hospital procedures that are not in my current best interest?  I trusted Nurse Mary. I've never had a nurse say to me that I can refuse; I had to know in every case that is my right.  I have mostly used this right to get more pain medicine before a procedure.

No one came to take me to my doctor's appt by 8 am and so I headed down the hall again.  I told the people at the nurses station that I could walk, but they insisted I had to go in a wheelchair.  About 8:15 "transport" arrived with a wheelchair, but seemed to be confused, thinking that my appt was at noon.  After the appt, I walked back to my room and got only a small scolding from the nurses.  Daniel arrived shortly after that and after my formal discharge I walked out, across the street, and into the parking garage. (Nurses didn't object to my walking out.)

With all these adventures and more, I have decided that I was just not sick enough to be in the hospital.  I have to say also that I had to remind myself that I could get up and walk to the bathroom.  Something about a hospital bed makes me want to stay in bed and call people to do anything for me.  Habits are strong.

My eye operation was long planned, at least since a year ago April. This is my last planned surgery.  I've decided I've had enough hospital.  I'm committing to staying hospital free for a decade!

On the other hand, our hospitality at Beanie's house is extra fine.  Beanie has been taking great care of us as Daniel and I can barely drag ourselves around.  We are looking forward to energy soon.  And, we are so grateful for all our blessings.  How blessed we are not to have all the terrible problems of Betsy's friend, for example.  How fortunate that I have medicare and do not face the problems so many people with "pre-existing" conditions must face.

Love and peace to you,

Bonnie for BanD

Life: Post Surgery

It’s been more than a week since my corneal transplant/cataract removal operation.  I’m doing OK, not really great.  I have overcome the experiences of my funny hospital stay.  On Sunday night my left (operated) eye started to tear.  I don’t have tears; so where did this liquid come from?  My only answer was that my eyeball was leaking.  It wasn’t much, just a few large tears.  My eyeball wasn’t sore and it felt “firm.”  On Monday morning I called Dr. Colby’s office and talked to one of her assistant docs.  (She has a cadre of young docs who are more than interns; I suppose they are residents seeking certification in corneal surgery.)  I discussed the tear situation; she assured me that Dr. Colby did a really good job of sewing the cornea and that it was highly unlikely that my eyeball was leaking.  We discussed how tear glands can produce some tears which might be trapped inside my lid (since it is sewn) and them come out all together.  We agreed that I would come in to she her and Dr. Colby the next day.  Later Monday I started to get a fever that eventually got to almost 101.  I was talking with Zac when I had to throw up all the pills I recently taken.  This was all bad.

My visit at Colby’s office went well.  No sign of infection or perforation.  All the docs who saw my eye (5 of them) thought the work was “beautiful.”  But Colby wanted me to get to Dr. Cutler (transplant doc) right away because of the fever.  So, off we went to Dana Farber with me on the phone, calling Cutler’s office to get an emergency appointment. When we got to DF, the receptionist again paged Cutler about me.  When I saw him crossing the waiting room, I wasn’t surprised to see him.  But he was surprised to see me:  “WHAT are YOU doing here?”  We did get to see him after every imaginable blood test for infection.  The tests were negative.  I am on antibiotics again.  I haven’t had a fever since Monday, though I continue to feel not quite well.

This morning I got an email from Malcolm Slaney saying that two patents we worked on together at Interval have now been published.  My, it is fun to hear this after all these years (dating to 2000).  Malcolm has done the hard work of writing them initially and then rewriting them to meet examiners’ objections.  Daniel and I talk often of how our  Interval visions of the future of life are more and more our real life. These are TV related patents:  AUCTION FOR TARGETED CONTENT and TARGETED TELEVISION CONTENT DISPLAY. 

I’m having a good time here with Beanie.  Today we spent the day each working on our own book.  She is a mentor to a half dozen people in AA and does amazing work with them.  It is heart warming to see how much good she does with her AA work.  Bean has Patriots’ tickets as part of a set of season tickets on the 50 yard line.  She went to the opening game last night.  Daniel watched it on TV.  I went to bed!  It was so much fun hearing about it this morning.  I’ve become quite adept at enjoying virtual experiences from stories regardless of media.

Daniel went to Amherst to see the chiropractor he used to see in Palo Alto and also two of his high school teachers who arew still his friends.  How many people still know any of their high school teachers, much less are friends with them!

Today I continued not only writing the book draft, but also learning new software.  I’m trying to figure out how to do things on the Mac that I take for granted in Windows.  If anyone knows how I can get a “forward delete” function in addition to the backspace that Apple calls “delete,” I’d sure like to know about it.  I figure since they now have a way to do right click, there must be a work around for forward delete.  I have a couple of other questions, but Lyn and Taro are looking into them with the Apple experts.  I’m also making an appointment to see a Genius next week when we go into Boston.  I’m slowly learning the ins and outs of three new applications for writing.  Scrivener and I are getting along pretty well.  Exploring the Scriv forum today I learned about Bookends as a Mac alternative to Endnote.  I think that will stop my hair pulling about references (I don’t have enough hair for hair pulling). Daniel put iWorks on my Mac and so I now have a real word processor that brings me joy as I write this, though again there is a learning curve.

Oh, yes.  I had a chat with son Ron.  I was telling him all the stuff about unexpected tears and fever.  He asked after that how my vision is in the left eye. VISION was in fact most of the reason for the operation.  The answer is I won’t know for a while.  It may be weeks before we unstitch my eye.  From the corners of my eye I see better than before.  I can count my fingers, but I don’t have anything like “good” vision.

Love and Peace, Bonnie for BanD

3-D Movies

In June Zac and I picked up Lucas from the Learning Center and joyfully headed to see the new Ice Age movie in 3-D.  Rosemary had been telling me about the amazing new technology.  I loved the old 3-D and was really looking forward to seeing the new stuff.  I planned carefully to arrive in plenty of time so that we would not miss a moment.  As I approached the theater it suddenly occurred to me that I couldn’t SEE a 3-D movie.   I imagined that all I would see was outlines of the characters and sets in either red or blue.   I told Zac about this.  I don’t know that he really understood my amateur technical description of stereo vision, but he assured me in typical Zac fashion that it was alright.  We could see the movie in 2-D.  We arrived in time to do that.  I was the only one who was disappointed. With my new operation, I believe I will someday be able to see a 3-D movie. 

My eye is healing much faster than in January of 2008 when I had the emergency transplant.  Still all is not great.  I saw my surgeon a week ago Tuesday for the emergency I talked about in my last post. She was very pleased with how my eye was healing.  Recall that she had put a piece of placenta (called an amnio) on my eye and stitched it mostly shut with just enough open to inspect it.  When we talked about when we might unstitch it, she said she did not want to do than until the amnio had completely dissolved and that could be weeks.  She was certain that it would not dissolve in the week before my next visit.  But surprise; it did.

Yesterday it had completely dissolved.  She decided to unstitch it for a couple of reasons:  first it looked like I might have an abrasion (a hole in the surface layer (epithelial) and second she had secured the amnio with a ring that needed to come out since there was no longer an amnio.  When she took the stitches out; I could see better than I remember seeing out of that eye in a couple of years.  My vision is not good in that eye, but I am much more able to see shapes, such as Daniel’s beard and glasses.  Before the operation I couldn’t see any detail of faces; in most light conditions I couldn’t see heads. 

However that abrasion is a problem.  Colby wanted me to see Drs. Jacobs and Johns at the Boston Foundation for Sight right away.  The Foundation people are the ones who have helped me be so much more comfortable as well as saving my eyeballs from damage due to ultra dry eye.  These folks are the most dedicated doctors I have ever had (and I have had many).  When I first got the lenses they make, one of them came into the office each day over a holiday weekend to check my eyes.  They define hospitality.  Not only do they have wireless internet and computers for patients to use, they have a fully stocked snack kitchen for patients.  Patients come from all over the world to be fitted for these miracle lenses.  Dr. Rosenthal, who invented these scelerial lenses, invented the original contact lenses and started the Foundation with the money he made by selling the patent to them.  The office is more and more filled with people from all over the world for whom these lenses are life savers.  Medicare only reimburses about half of the $6000-7000. cost and many insurance companies don’t do that.  Many, many patients have to get free care.  These doctors just don’t turn away people in pain.  This is a very busy week for them; their busiest of the year and yet because they knew I was in pain they made time to see me today, tomorrow, and probably Friday.  I have a soft contact on my eye until tomorrow when they will make a new left lens for me.  I think the prescription will let me see letters.   We’ll see.

We’d planned to leave Saturday for Chicago via State College to see the Bensons, but plans are on hold for a couple of days.  I am hoping to be able to see Daniel's mom Margery as well as friends.  We’ll see.  You know my motto:  well, well, well, you can never tell.

Meantime, we are so comfortable at Beanie’s.  She the the best hostess.  We came home exhausted after a day at the docs to find a beautiful lamb chop dinner.  Yummy.

Pray for the fine senator we lost today.

Love and peace.  Bonnie for BanD

My Third Birthday

It’s been THREE years today since my stem cell transplant.  Daniel and I are thankful to Jay for his donation.  We feel especially blessed that such a spiritual person from such as spiritual family was my donor.  We know that God has blessed us.

Here is a picture of the actual event three years ago.  There was no “operation” of any kind, rather it was like a blood transfusion.  Those of you who have had transfusions will recognize that the liquid is bright pink and not dark red like blood.  After I got one bag of stem cells, I was surprised to get a second large bag.  The doctors and nurses who do this all the time were also surprised at the volume of stem cells. 

Normally a transplant does not work unless the percentage of leukemia cells in ones marrow is less than 20%.  Chemo did not work well on me, leaving me with too much leukemia.   More than 60% of the cells in my bone marrow were leukemic.  Yet, before the transplant my bone marrow was very low on any kind of cells, healthy or not.   The only hope for the transplant was that I was so “hypocellular.”  Those big bags of stem cells did the trick.  Within two weeks, much to my doctor’s surprise who thought I only had a 10% chance of a successful transplant, I was leukemia free.  A year ago I celebrated my second birthday.  Few people relapse with leukemia after two years.

Unfortunately, passing that second birthday was deceptive for me.  While I was beating the odds for leukemia relapse, I was not paying adequate attention to my chronic graft vs. host disease (GHVD).  A sunburn in the summer had caused a flare of GHVD and I was on a relatively high dose of prednisone and another immune suppressant.  My ignoring the immune compromise this created led to my fall and all the trauma of last October and afterward.

I am doing better.  My vision improves each day.  I’m very glad I’ve been able to have the corneal transplant in my left eye.  I am able to drive myself to the eye doctors whom I see EVERY day. 

We’ve been here in Boston for three weeks now.  Beanie continues to be wonderful to us as I slowly heal.  None of us expected our one week stay to last this long.  Tonight we will have steaks and a grand celebration of birthday #3.  Hopefully by Friday we will know what happens next.

Love and Peace,

Bonnie for BanD