Bonnie Recovery

Declaration of InterDependence on the 4th of July

We had a wonderful time to day on this warm 4th of July with Bonnie on her Day Pass from noon til 9PM.   But it does feel like high school when I have to drop my girl off before her curfew and do not dare kiss her in the car. 

Bonnie is making blood platlettes at the border of normal and they are coming up steadily.   Bonnie's other red blood cell components seem to be recovering as well.  This being Day 36 of Bonnie's fourth Chemo Cruise... we will soon meet with the doctors for Bonnie's bone marrow biopsy.  We hope and pray to be able to go on to coordinate the many highly interdependent actions that compose a successful bone marrow transplant and recovery of one's natual immune system without triggering Graft vs. Host Disease.   We are interdependent on the donor, two key doctors, a dozen nurses, nurse assistants, housekeepers, pharmasists and a dozen or so specialists who are on call.   On this 4th of July we celebrate our interdependence.

We had a great 4th of July.  Ryan and Jackson came over to get ready to watch the World Cup.  Ryan went and picked up a wonderfully skilled Jamacian soccer player who plays on his Harvard Medical School team and his Russian girl friend. 

We all watched Germany vs. Italy on our HDTV.  A World Cup day indeed.

Counts

On day 37, we are still patiently awaiting a robust production of those white cells called “neutrophils.” When you ask a leukemia patient how she is on such days, she is likely to tell you first about her “counts” – her blood counts that is. I even pulled that trick on Katherine, the chaplain here. It is a challenge to look beyond the daily blood tallies to take in the rest of life and spirit. Today I’m indulging myself in a blog entry that is mostly about counts. As for the whole of me: My spirit is good. I’m up to Psalm 120 in my Bible listening. I had a fantastic 4^th of July weekend; in his entry yesterday Daniel talked of some of it. I’m out on pass for my 5^th day in a row. 

While I had hoped that my neutrophils count might recover to the 2.0K or better level by day 35, it hasn’t gone beyond .43K yet. (4.0K is low normal). However, I continue to make red blood cells. These were boosted along by a big piece of tri-tip beef cooked by Beanie Weaver when Daniel and I took a day trip to Wrentham on Monday. I haven’t had a transfusion in twelve days and yet I remain at near normal levels. This is particularly impressive when you consider that to test my blood they take as much as a unit of blood every ten days. 

The good news about my blood counts is that my platelets are now in strong normal range, which is 150-400. My platelet count today was 190, up from only 7 two weeks ago. Dr. Stone observes that this is “usually” the sign of a healthy bone marrow. He will be doing a bone marrow biopsy soon, probably Friday. I’ve had no leukemia cells (blasts) showing up in my circulating blood. 

On the continuation of this entry is more discussion and a diagram of all this blood stuff.

Can't Sleep - Frightened .. what if ..

I can't sleep tonight.  I am alone in our bed.  I miss sleeping with Bonnie.  I miss reaching out in the night and touching Bonnie's back or her breast.  Never once in the two decades we have slept together has Bonnie said "I am trying to sleep" when I tell her I love her, even at 3:30 in the morning.  Bonnie, somehow, is always there for me.

I am sad now and a bit frightened.  What if Bonnie is not here this Christmas or Easter.  She can not live for years on antibiotics.  She must make white blood or it will be "game over" one day. 

We tell our grandsons that it is alright to be frightened when there is a big explosion on the 4th of July.  But who is to comfort the grandfathers? 

I dread the possible news from the bone marrow biopsy.  We are not likely to get a meaningful report until Monday or Tuesday of next week.  Over the weekend we will certainly do our normal things and be cheerful and happy.  Maybe we will have a BBQ.  But dread is never far from me.

What if ....  No do not think it,  It is simply too empty a bed to stare at directly. 

I will try again now to go back to sleep.  It is 3:30 AM again.  I would call Bonnie to tell her I love her, but she needs her sleep. 

So I am telling you.  I love that Bonnie Jean.  What an unusual woman.  She sure has range:  From history to math, from architecture and design to rhetoric and Plato.  From Texas to Silicon Valley, and Boston.  From diamond rings to wooden crosses.  From books to bonsai.  From New Testament to Old. 

I pray that God does not allow her to range too far from us now. 

/Daniel  for BanD.

Feeling no pain

While we were waiting for the doctor, Bonnie decided to listen to the Dali Lama chant a Tibetan healing prayer.  He has an amazing singing/chanting voice.  The chanted prayer goes on for over an hour.  Within minutes Bonnie's eyes lit up with an inner light -- and her left cheek shone with light almost as bright as the glare of the sunlight being reflected off of her glasses.  It was so vivid and persistent that I am sure a camera would have captured the light coming from her eyes and cheek.

Bonnie now knows the Dali Lama's healing chant well enough to anticipate it's changes of scale and tone and to make many of the right sounds at the right moments.  It is wonderful to see our Bonnie going "out" of her mind and body space and smiling at me and the world all the while.

Bonnie did a wonderful job of handling her bone marrow biopsy scheduled for 2PM, though we had to wait until around 5PM.  I think that this is the tenth or eleventh such incursion into Bonnie's hipbone.   

You have done this proceedure when you push an oven thermometer into a big roast, but you are only half way complete.  Think of pushing the metal shaft of the thermometer deeper... all the way into the shank of a leg bone and stopping midway in the bone and twisting and pulling out a hollow shaft with a core of bone and marrow.  Ouch.   

This time the doctor probed before the numbing medications had fully worked and so Bonnie experienced and dealt with bone pain as I held her arm and shoulder.  She is amazing: she simply lets go, as if forgiving the pain.   By the time the proceedure was over the morphine drip and other drugs she had been given washed over her and the pain dissolved. 

We will know the results by Monday, or Tuesday at the latest. 

Sunday Blues - Awaiting Monday's news.

I have the Sunday Blues as we sit awaiting Monday's (or Tuesday's) news. 

The World Cup Championship was not very satisfying.  It feels like watching the exchange of penalty kicks to be waiting to hear what is "so" from the bone marrow biopsy.  Hardly the way one would want to have the future decided.

Bonnie looks the best I have seen her look since November.  Furthermore her blood counts are the best they have been since Noveber when she was diagnosed with the relapse of her Leukemia. 

Bonnie made some Neutrophils over the last couple of days.   While her white blood counts need to come up at least 10 fold to approach normalacy, she may be in a range that would allow her to come home this week.   This is Bonnie's 41st day in the hospital on the current "chemo cruise".  Bonnie has been in the hospital about 76 days in the last three months.

The nature of Leukemia is that one can have mostly decent blood counts, but still have deep-seated malfunctions in blood production lurking in one's bone marrow.  This is a trickster disease.  Nothing is as it seems.

Monday - no news - waiting

I picked Bonnie up at BWH today as usual.  Bonnie told me... oh yeah, I saw our amazing Dr. Stone, but there was no word from the Pathologists yet on the results from the Bone Marrow Biopsy.  Dr. Stone is hopping on a plane and so we may not hear until Tuesday or Wednesday.

So we painted the kitchen cabinets and walls above the new counters in the kitchen.  We are getting the house ready for the housekeeper to do another round of deep cleaning tomorrow so Bonnie might be able to come home after 42 days of hospitalization. 

My semi-commercial espresso machine should arrive today, but it is purely sublimation and whistling in the dark.  I ordered it with Red side panels, just like our Honda Odyssey is Red to denote strong blood production. 

The La Spaziale S1 espresso machine is made in the same town in Italy as the Lamborgini.  I look forward to making perfect espressos with fragrant crema for my "La Crema" for decades to come. 

We are nothing, if not rhetoricians seeking to call out our future.

Leukemic cells still in the marrow.

Dr. Stone is in Washington DC to review new grant proposals for new clinical trials for this vexing and still mysterious disease.  A part of our amazing karma is that we were referred to such an eminent doctor for Bonnie's care.  We are truly blessed with amazing care from all around us.

Meanwhile the pathologists are still working on the bone marrow core, but the intitial and partial report relayed via the attending oncologist, based on the aspirate, is not great.

Apparently there is still a "significant" level of Leukemic cells in Bonnie's bone marrow.  Less than before.... although given that Bonnie marrow was up to 90 percent blasts, how much higher could it have gone?   

The level of blasts currently in the aspirate may not be low enough to risk a bone marrow transplant.  On the other hand the pathologist is not certain enough of what they see on the slide to call the questionable cells they see "blasts" for a written report.  A blast, you recall, is an immature cell that will NOT grow up, which in Bonnie's unusual case, looks very much like immature cells that DO grow up. 

So the news today is as it has been for the last 9 months:  we still do not know.  The Pathologists still do not know.  The Doctors still do not know.  We still do not know.  We should know more soon.   

The good news is that Bonnie seems complete at peace with all of this and is even upbeat.  She wants to eat at her favorite Mexican restaurant for lunch and she sees that we have several options going forward.

Maybe Thursday, Maybe Not

This is an update to Daniel's message below.

The pathologist charged with interpreting my bone marrow aspirate declined to make a final report.  The cells that might be leukemia, might also be immature white cells that will grow up.  The pathologist will wait to make a judgment until the "core sample," or the hard part, of the biopsy sample can be read.  This is likely to be on Thursday. 

However, the core sample was only about half the size of what pathologists want for analysis.  On Thursday we may hear that we need to do another biopsy and if that happens, we'll have no results until sometime next week.

Our waiting time continues as it has for nine months. We continue to enjoy our life and especially my furloughs from hospitalization.  We have faith in the ultimate grace of our situation.

And we especially appreciate your good thoughts, prayers, and concern.

Love, B.

Wonderful Day with Bonnie - No Bone Marrow Results Yet. Yikes!

Bonnie had to tank up with one unit of blood, so she was late in coming out for her furlough.  This allowed me to get the last bits I need to finish plumbing-in the new La Spaziale Vivaldi Espresso machine.  What a project.

Bonnie cleverly re-arranged the timing of her anti-biotic infusion so she could stay out later this evening.  I grilled some wonderful 1.25" thick, ground-steak tavern burgers on the Weber BBQ in the pouring rain.  We see a direct correlation between Bonnie getting lots of protein and her red blood counts going back up.  It is not very encouraging when Bonnie has to dip back into the blood bank.   So I splashed out to the Weber to flip burgers and toast the challah bread buns in the pouring rain.  Bonnie laughed when I came in looking like a drown sailor and had to drain rain water off of the platter. But Bonnie ate 1.5 of these wonderful burgers.  I love to see her eat with appetite. 

It feels soooooo good when we just hang out at the apartment and putter around cleaning up various incomplete cycles of action.  I feel my shoulders go down and my whole nervous system go into flow when Bonnie gets into the car. 

Maybe ... it's good

The news from the doctors is mostly good. We will not redo the bone marrow biopsy, at least not right away. The report from the pathologist after viewing the “core sample” was that about 30% of the cells in my marrow are leukemia cells, BUT that my marrow is very “hypocellular” (not many cells total, mostly fat tissue) Most leukemia patients have “hypercellular” marrow (crowded cells). The key factor in deciding about a marrow transplant is the total leukemia cells because these cells can kill off the donor cells. So, even though 30% of my cells may be leukemia cells, there aren’t so many of them. (Got that?)

The plan from here is probably this:

• Tomorrow, I get discharged from the hospital (Day 46!). Yeah.
• Also tomorrow, the transplant folks begin to contact the donor and schedule him for the preparatory injections. The casual estimate is that with tests I need and the donor prep, it will be a month before I go back to the hospital for the transplant.
• Sometime in this month I will have another marrow biopsy, both to assess the extent of leukemia and also to take aspirate that will be used to create a “vaccine” that I’ll receive after the transplant that will help the new cells to kill off the rest of my leukemia.

As we contemplate this direction, we recognize that the path of transplant is the “aggressive” path with considerable risk of its own. 

Daniel and I are gratified that this second round of chemo therapy has been successful enough to qualify me for a transplant. This is the step we have prayed and hoped for.  And we are so grateful for all of your prayers.

Daniel has the new espresso machine installed (and I do mean installed with all the plumbing done for the two filters and direct feed of this filtered water into the machine).  Pictures to come.

He reminds me to remind you that the operative word is Maybe…maybe I’ll be out tomorrow and on my way to a transplant.

Love to you, Bonnie

Bonnie is home - huuuu-rah. What an odyssey.

Bonnie called me this morning.  She said that Dr. Stone had prevailed in his consultations to get her anti-biotic infusions stopped.  Her blood counts were up again.  Her discharge papers were being processed.  I should come and get her.  The clear, unspoken message: "I do not want anyone to change their mind... get here - NOW!"

Bonnie had organized her hospital room's contents and made ready to place everything into the suitcases and duffle bags I dragged up in the elevator.  By the time I returned to her room with the hospital's brass "hotel cart", Bonnie had her iPod based stereo system, her color scanner, lamps, laptop, library of DVDs, 2 dozen books, and the wall full of photos and cards, and her clothes and duvet cover and pillows - all packed and ready to go. 

Bonnie clearly learned something in her reading of Exodus;  She was fairly humming to get out of Brigham and Womens Hospital before any locusts or frogs started to rain down.

The nurses laughed and sort of cheered as I rounded the corner behind the hotel cart overflowing with the black leather glider chair and half a dozen suitcases, followed by a bald Bonnie with her greeny-blue face mask.  We said goodbye and thanked them for their care throughout this fourth round of Bonnie's chemotherapy.   

Once clear of the nurses' station, Bonnie did not looked back.  She had read all about Lot's wife. 

Life at Home

We’re I’m celebrating my 5^th day at home. My nurses were suprised that I could clear ALL the stuff from my hospital room in half a day.  Daniel and I weren't smiling as we left my room, but we were joyous on the inside.  Here is Daniel with my chair, my suitcases and other stuff on a cart heading for the car.  I'm about to erase my name from the door.

I can hardly remember being in the hospital now.  I’ve adapted my morning tea and orange juice routine to home; I now use the water spout on the big espresso machine instead of the hospital microwave to brew morning green tea .

Jackson and his mom (Debrah) came back from twelve days in San Diego yesterday.  As you may know Boston’s “Big Dig” project is having more problems; the Williams tunnel from the airport is closed for repair.  Daniel braved the traffic to pick up his grandson (and mom, of course).  Jack is fond of computers as well as soccer; he hasn’t tasted latte from the new machine yet.

Daniel and I went to Dana Farber for my first post hospital blood tests yesterday.  My counts continue to improve.  I have very strong platelets, over 250 (normal is 150-400) and my red blood is completely normal, even the “crit” level is well within the normal range.  My total white count continues to be slow in returning.  I’m now up to .7 (4.0 is normal), but neutrophils as a percentage of white blood is almost normal (46%, only 2% short of normal).  So my total neutrophils count is now 320, climbing toward the 500 when I’ll no longer be neutropenic. 

Have Chair, Will Travel

Late Friday afternoon we got the good news that my donor has been contacted, but that he can’t be ready for my transplant until Aug 22. YEAH. This means that we can go to NC for Zac’s fifth birthday party and indeed stay nine or ten days in our own beach house (which is rented to others until Aug 11).

When the case manager told us how important it is that I continue to move around and not stay in bed during my hospital stay, we asked about bringing my big chair and she said, “of course, as long as it can be cleaned with sterilizing cloths."  The minimum stay will be eight days and rather than return to the clinic for long appointments the three days after I get out, we will probably lobby for me to stay in the hospital for a total of fourteen days or so.

I was so thrilled to know that we can be in NC, I immediately started looking to rent someone else’s condo for the week of Aug 5-12. I found a great place with a pool and tennis courts where we can have “Camp Zac.” As if to remind me that nothing is certain in the world, I started to have slight fevers on Friday night.  On Saturday, I booked “Camp Zac,” but paid for “insurance” just in case my health changes or hurricanes decide to interfere. When my temp got up to 101º this morning I called the doc; he wants to hold off on antibiotics until I see him tomorrow until I have a fever spike or other symptoms. As we say, “well, well, well, you can never tell.” On Friday we got the firmest schedule we’ve had in the last nine months of waiting. And within hours, I was uncertain again.  We are still “all systems go,” but I’m not as cavalier that I know what happens next as I was Friday night.

Speaking of schedules, here is what we have, assuming that I actually enter the hospital on Aug 22:Aug 22: I enter hospital for four days of chemo and immune suppressors, intended to make my system open for a change.

Aug 27: “Day of rest"

Aug 28: Stem cell infusion. This will be my new “birthday.” Nurses urge me to be sure and celebrate it as a birthday. All days are counted with the infusion ad “day 0.”

Aug 29: 24 hours after stem cell infusion, I get immune suppressors for the donors cells to make them not so aggressive that they kill me.

Aug 30: Potentially I can leave the hospital, but continue to get donor cell suppressors.

Sept 7 (day 10), is the crash day when all my counts are low and I may feel like I’ve been hit by a Mac truck.

Sept 11, (day 14): “engraftment” begins. My white blood cells should begin to rise using the donors stem cells as the progenitors that create the cells.

Sept 26 (day 29) bone marrow biopsy to determine the extent of my “chimerism.” Yes, I will be turning into a sphinx-like creature. The DNA of my saliva will be the DNA I was born with. The DNA of my blood however will be the donor’s. My blood type will change from O+ as it is now to A+ (the donor’s type). My chromosomes will be male: XY. You may have read mystery novels about chimeras resulting from transplants. Daniel continues to be concerned that all this chromosome change will led me to make lots of testosterone and he won’t be able to keep up with my new sex drive. The doctors won’t confirm or deny this; they just laugh.

For a year post transplant I will be immune compromised as my unusual new immune system tries to figure out how to protect me from everything in the world. I’ll continue to get immune suppressants.

Well, that's our story for today.   Thank you for checking in and for all your prayers and good wishes.

B for BanD

 

Bonnie back at BW Hospital to Knock out her Fevers

Bonnie is now safely ensconced in a new room high up on the tenth floor of Brigham and Women's Hospital and being infused with antibiotics. 

Bonnie finally has the Boston City Lights view she has wanted for so long.

Bonnie's doctors have her where they can view and treat her fevers with a broad spectrum antibiotic, while the Infection Disease folks await the lab results to see if they can discover exactly what has been causing Bonnie's recent fevers. 

With a 0.7 neutrophil count (normal is 4.0 - 8.0) Bonnie's fever can be from one or more different kinds of infections.

Bonnie had chills and a degree or two of fever for a couple of days.  By 1PM Sunday, Bonnie's fever went above 101.5 and we knew we had to call and report in with Dr. Stone.   

A few hours later her temperature went over 102.5 and we knew we had to go to BWH Emergency Room, and probably get admitted again.  Such is life without an effective immune system.  Until fifty years ago, such fevers would have spelled the end for a person with Neutropenia.  For folks like Bonnie who are severely allergic to Penicillin and Sulfa these fevers would have been most dangerous just a few years ago.

Expletive Deleted

Yes, expletive deleted.  Bonnie is alternately shivering and then flush with fever.  She cycles up and down from 99.5 to near 103 depending on when she has had her latest infusion and Tylenol. 

Dr. Stone says the tests and cultures so far show no sign of what kind of infection she has and Bonnie's blood counts have dipped.  I was too disappointed to pay the exact figures "too much mind".  I think everything went down by about one third or so.  Apparently, Dr. Stone was not happy.  If Bonnie's fevers continue and there are no better clues by Thursday. Dr. Stone says we will have to do a bone marrow biopsy, since an explosion of Leukemia in the bone marrow can cause fevers.  Yes, expletive deleted.

I need a miracle ... everyday.

At about 9 PM Tuesday Bonnie had sudden rashes, hot flashes and burning cheeks and ears.  It seemed to take forever for the resident to arrive.  And then another long while for the Benedryl to reduce the discomfort to arrive.  We all had to guess that it was simply a drug reaction, though Bonnie was on her tried and true drug combos.  When the Benedryl arrived it was half of Bonnie's normal dose.   She had to wait another hour or two for the second dose.

So I slept in Bonnie's double hospital room on the tenth floor much of Tuesday night / Wednesdy morning.  Not exactly a vigil, as I was doing it more to be near her than to watch over her.  Bonnie has become the master of watchfulness.

Anway, if felt good to be semi-sleeping in the same room with Bonnie again.  Bonnie watched the last segment of "String Theory" on PBS.  It is a wonderful counterpoint to the hot flush she was experiencing.  We are clearly trying to find the worm hole to a cure for Bonnie's Leukemia, without creating a tear in the universe. 

Bonnie may be coming home soon.

Thanks for your love and support. 

As of 6 PM tonight, Dr. Stone has cleared Bonnie to come home when she is without fever for a day or two.  Bonnie's fevers are down under 100 today.

The inconclusive evidence from the bone marrow aspirate is as follows: "There appears to be no big change in Bonnie's bone marrow, which appears to continue to be very hypocellular.  The initial look does not show any significant change in her Leukemic load."

Of course, this is accompanied by the usual disclaimers, including that the aspirate is hard to read and inconclusive, and the boney part of her marrow will not be ready and read by the patholigist until sometime next week etc.

Impossible

By the time you read this, I will be out of the hospital once again. Monday and Tuesday were complete “wipe out” days for me. I forget easily how sick having a fever can make you. None of the tests revealed what, if any, infection struck me. We’ve learned something new about Leukemia; it can cause a fever without an infection. 

The week hasn’t been without its bright spots. I’ve had great visits and good meditation time, and at least one good reminder that there are few things certain in life. I had tried every imaginable route to finding a way to get broadband access in Brigham & Women’s Hospital short of signing up for a year with Sprint, whose access might not work. We had hoped when I was put on the 10^th floor with its open view we might get signal from some powerful source (no pun intended). We could see ten or so possibilities and actually sent one message. But no enduring joy. I was absolutely convinced that there broadband availability was impossible in BWH.

On Wednesday I learned I was moving to the 5^th floor. I had mixed feelings about having tiny room and a view of the building only feet away across an alley. Much to our surprise, when I turned on my computer in 5A-15, it immediately connected to Children’s Hospital, that building across the alley, and easily connected to their patient’s network. I had assumed that Children’s was part of BWH and therefore would have not had patient wireless either. Since I’d been in room 16 in April and hadn’t seen a sign of access at CH, I never imagined that I would have good access next door. Well, well, well, you can never tell. If something truly IMPOSSIBLE, like wireless access, is indeed possible, what are the possibilities? 

I feel as though God is reminding me (again) that what I can’t even imagine can still happen. I’m reminded of EDS’s 2005 orientation shirts that quoted from the closing of Morning Prayer:

Glory to God whose power, working in us, can do infinitely more than we can ask or imagine. Ephesians 3:20    

When I think about this wonderful statement of Paul’s, my disease seems so small. 

And now, on a bright (and hot) Saturday morning, I am packing to leave for Cambridge. It's 10am and the docs have already signed me out.   YEAH.