Bonnie Recovery

Romantic evening by the light of...

Bonnie and I had a romantic evening by the light of ...
the infusion machine.

We sat in the dark together.  The main feature in the dark was a fancy chrome pole on casters crowned with four hooks, each hung with different size bags of anti-biotics, anti-nausea drugs, and a succession of 3 different chemo drugs.  The pole has a computerized pair of pumps and LCD screen and status lights.  It looks like the displays in the pilot house on a small yacht.

We sat in the dark and enjoyed each other's company ...

Getting Slower

I’ve been in the hospital a week now. Last night was the last of my six days of chemotherapy infusion. Recall that with “induction chemotherapy” the goal is to give high doses of chemo fast to knock out ones “fast growing cells” as rapidly as possible. I will be staying here for some weeks because this process knocks my immune system and so they keep me here so that they can attack any bacteria or fungal infection quickly. I’ve not had any fever.

Over the weekend I mostly slept. The nurses have me sign my name every day and also do some coordination exercises to test my cognition. So far I’m passing those tests.

The area around my central line is quite red and painful; if that doesn’t improve by tomorrow, they will take out the central line. This means they will be inserting and removing new infusion lines into my hands and arms every four days, and sticking me to take blood once or twice a day, yuch.  What I most wanted to have a comfortable stay here was to have a good central line. I’m trying not to be discouraged about the prospect of losing the line.

Daniel comes to the hospital a couple of times a day. We had a “movie night” on Saturday. Yesterday he kept Jackson in the evening and came by afterward to tell me stories of Jackson’s latest achievements. I have some great pictures of Zac catching his first fish of the season.

I enjoy Eucharist often. Mary Wenzle, who visited me often in April, has been in the hospital getting a new knee. She is now in rehab and I hear that she is recovering well. Sue Cronmelin is doing the required hospital chaplaincy training in the northern suburbs of Boston; with travel that is a 12 hour day. Still, Sue comes to see me on weekends. Susan Langle brought Eucharist today. Besides the spiritual uplift, Susan can get me engaged in the events of next week’s Episcopal General Convention. We are hoping for a Convention that focuses on the important peace and justice issues of God’s work and is not too distracted by right wing attempts to make political capital out of the event.

I feel weaker all the time and expect that I will be spending many days asleep in the next couple of weeks. The anti-nausea medicine I’m getting isn’t working as well as before. I hope that this is because the chemo drugs are actually working better this time. This isn’t a cheery post. I’m taking the bad with the good. So far, apart from sleeping and nausea, the good has dominated my time here. I’m grateful not to have sickness distract me from prayer time.

Infected Central Line , High Fever - Lost Wedding Band and a "Quicky" Remarriage.

Infected Central Line -- yowww.

The "Hickman" line inserted 16" up a vein in Bonnie's chest had become sufficiently red and swollen with an infection, that the Doctors ordered that it be pulled out.

This is tricky on three counts: 

Bonnie needs a port into a large vein or she will have to be subjected to a fresh needle insertion in her arms or legs every four hours for the nearly endless infusions of anti-biotics, anti-virals, anti-fungals and for all blood draws over the next month.  If you do not like the blood draw done at your annual physical, imagine such a needle stick every four hours, and drip lines running for hours into such needles.   So, if Bonnie does not have a Central Line, the next thirty days would be come a series of "stick, stick, stick, Oh sorry to awaken you, stick, stick etc."

Bonnie can not have a new central line inserted into her arm or leg unless she is without fever for fear of compounding an infection: she is severely neutropenic (ie. without white blood cells or neutrophils to fight infections).   

Inserting and removing central lines involves small surgeries that impact veins that go straight to the heart and thus require great care and skill to keep the operating theater sterile and the proceedure quick.  If it can be done in Bonnie's room this saves her from being exposed to hospital halls, and elevators which are hostile environments for folks without immune systems.   

A highly skilled nurse practitioner and surgical assistant came to Bonnie's room yesterday and were able to accomplish the surgery without needing to move Bonnie to radiological surgery. 

We were very fortunate because within a few hours Bonnie began to run a fevcr of 102.6 which would have prevented her from having the PIC line installed. 

Her fever has not dropped with doses of Tylenol or the infusion of a second intravenous anti-biotic.  It is best to watch the top right hand corner of this weblog and call Bonnie only when she has fevers below 101, as she needs her rest when her fevers are over 101. 

Looks like we got the new PIC line (Perphierally Inserted Central line) installed just in time.  We thank God for small mercies. 

Now on to how I lost my wedding band and our "quicky" remarriage...

The PIC line must go - Infections ++

Well, in the continuing saga of this chemo cruise, Bonnie's new PIC line had to go;  "The Boys from ID" found an e-coli-like bacterial infection in some cultures of Bonnie's blood. 

So the Infectious Disease Docs said "Let's take the PIC line out until you have no fever for at least 48 hours and clean bacterial tests."  Badda Bing - No Central Line.

Let it suffice to say that for the last couple of days Bonnie has been physically sick from the Chemo aftermath and leave it at that.  This is par for this course of chemo.  She would rather be playing golf.   

Bonnie trusts that she will feel better in a day or three.  We have learned what happens when we dance with the Mac Truck-like impact of induction chemotherapy, which seems to really hit in days 10 - 25.

It feels like there is a tango with modern medicine: It is one step forward, one step sideways, twist, and two steps back, then two steps forward - the sinusoidal path of allopathic medicine. 

For those who like the mushy stuff:  Bonnie and I had another wonderful evening of hanging out together in her room, talking about everything and nothing in particular.  The leather glider chair is heaven sent.  Every chronically ill patient and family should have one in their hospital room.   

One highlight of the evening was discussing Jennifer's call, complete with the "Zachay and Lucas report."   We have a great portfolio of grandsons and wonderful dividends in joy.   

Mostly we found ourselves again grateful for our time together now.

And sort of laughing at the accident of running into each other twenty years ago.

I am glad we were both crazy enough to marry the other. 

Our Bonnie is a beautiful woman - heart, face and soul. 

/Daniel  for BanD.

Day Pass

The doc has signed for me to leave this hospital for a few hours this afternoon.  On Monday, Stone said that he would approve, assuming I had no fevers or other apparent illness.  When the fevers hit on Wed, I lost hope of the possibility.  And yet they were able to identify the little bug that was up to mischief and within 24 hours of the treatment, I was once again fever free.  I got two units of blood and one of platelets yesterday and I’m feeling strength from that.  Even a few hours away will help me remember what trees look like and give me the opportunity to use video Skype to call Zachary and family.  I’ll also get to see my friend Mary who has a new knee.

I woke up to bright blue skies this morning, after a week of rain in Boston.  Looks like a good day for an outing.

Today is Trinity Sunday.  It was a special Sunday when I was young because our parish was called Trinity, and that was the day Bishop Hines came to visit us. Last year I wrote a sermon for Trinity Sunday.  Download bjohnson_trinity_circulate.doc .  Writing it was way for me to explore relationships within families.  The beginning also has a brief history of the concept of Trinity, which many people find puzzling.

My phone was not working yesterday for the last round of switch arounds.  I should now have stable working service on my cell phone (650-324-3816).  Just as my phone problems cleared up, I find that I have an email problem.  Yahoo insists that I upgrade, but in two tries I’ve not bee about to download the new release.  I guess this is the best possible day for me to be going home so that I can be broadband long enough to get my mail working. 

This is the first day since Tuesday that I’ve even wanted to look at my computer.  I am way far behind on email.  I’m so grateful to Daniel for keeping up what’s going on; he helps me find humor in the worst of circumstances.  I continue to think of my journey as one on a tightrope.  I had a little slip this week, but I’m still going. 

Another Day Pass

Last Sunday's escape from the hospital went so well, I'm going out again today.

I would never have guessed from how I felt last week that I'd be able to get out.  Once my fever broke, I have felt stronger each day.  I'm still not able to eat much.  It is not so much nausea as food tasting bad because of the medications I'm on and the assault the chemo made on my whole digestive track.  At home on Sunday, while watching the last show of the Soprano's season that Daniel had recorded for me, I ate two pieces of pizza without difficulty.  My distaste for food may also be related to the repetition of hospital food and and the general smell in here.

I have a quarter inch of fuzzy grey hair now.  It should fall out any day now as the result of the second chemo round.  I'm getting used to being bald and can't remember what I looked like with hair without looking at a picture.  I've put a picture of me having a really good "hair day" on my wall, to remind myself that it will be ok to have hair again.

Daniel got the Bette Crocker award for laundry yesterday.  He came in last night with a big bag of folded clothes and declared that all the laundry was done and put away.  How can two people produce so much laundry?  And he completely prepared our apartment for the visit of our housecleaner.  Why is it that we spend time preparing to have a place cleaned?  Beanie had sent me this amazing "pop-up" card of a flower pot.  It was a good way to present him with a well deserved Bette Crocker award.

I'm sitting in my black glider right now getting an antibiotic infusion.  Daniel will pick me up downstairs and I'll have eight hours from the time they started this infusion before I have to be back here for the next one.  hmmm I guess I'd better get dressed for my day out.

Failure is not an option.

We have been quiet.  Not just quiet in this weblog, we find ourselves quiet in our time together.  I think we are just plain tired.  We have been at this for months on end. 

Even when we are talking of grandkids, our minds seem to drift further out to sea;   What will come in over the horizon in the coming week or two? 

Success or failure?

Furloughs

Daniel's lovely June 17th post says it all about what's happening with us these days.  We are just unbelievably tired.  Most of my furlough time is spent on the sofa, enjoying the light from the French doors behind me, and maybe watching Sunrise Earth in HD on TV.  Now that my red blood counts are in low normal range, I hope to be getting more energy.  I suspect that it is the suspense of not knowing what's going on inside my bone marrow that contributes to this tiredness, both mine and Daniel's. 

On each furlough we do something with friends or outside.  Last Tuesday at our EDS neighborhood picnic, I tried to find a "Hot Spot" that would give me enough bandwidth to have a video conference with Zachary.  There are a half dozen of us who have wireless networks around that yard.  I managed a short video contact before giving up.  Lest you think from his last message that Daniel has lost his inclination for kidding, please regard this picture of us.  I'm working diligently to get Skype connected and Daniel... well, Daniel is being Daniel.

BK Hipsher took these pictures of us.  Here I am trying to get my Zac in video communication with the EDS kids. We like this picture with the light alot; could that be an angel amongst us?  I took this picture of BK being very much BK in one of her rare moments of relaxing.
 

Daniel says that I am managing the rehab of a little rent house my Mom left me in Baytown.  My cousin, Claudia, is the one who is managing the process of bringing back a house that has really declined to be a wreck. I won't go into details of all that work! Because of all the construction and rehab going on in the Houston/New Orleans area, no sheet rockers were available.  Daniel asked our friend Joe to go to Texas and do the rocking.  Here he is talking with Joe from the restaurant where we went yesterday to get a little Boston atmosphere.  I was inspecting the construction detail of the restaurant, which was once John Hancock's Counting House, while Daniel was talking with Joe about the detail saving the little Baytown house.

Furloughs are fun, and now I'm off for my fifth one.

Conversation is Life

I continue to wait for the first signs of my making white blood cells.  I was able to go 13 days between red cell transfusions; I feel very good about this accomplishment.  I’m on day 26 of this induction chemo round; Dr. Stone said it could take as long as 45 days until we know if my white counts will rise to normal.

It’s been a great week.  It started out really well with the election of a Ph.D. in Oceanography to be the Presiding Bishop of the Episcopal Church.  As I understand more and more about global warming as a spiritual violation, I am so proud of our church for electing a person who can speak strongly over the next nine years about this catastrophic issue.  I haven’t seen Gore’s new movie yet, but I’ve seen him many times on the TV talk shows; the Charlie Rose interview was particularly good.  I accept his conclusion that humanity has about ten years to save life on this planet.  I’m happy for his optimism; I’ve been concerned that it is all over with, though we won’t know it for another hundred years.

It was good to be able to turn from my attention to global warming to a visit from Daniel’s sister, Bev.  Bev is not only a wonderful sister, but a social worker.  She has fine communication skills and the three of us had long conversations each day about the present as well as the past and future, particularly my health future.  We spent Wednesday in conversation in my hospital room, expecting that I’d be on furlough Thursday and Friday.  However, by Friday, my red blood had tanked (out) and I needed a two unit fill up.  That is a seven to eight hour process, so we spent the day and the evening here in the hospital room.  By evening we were giddy and decided to break out the champaign Daniel had brought in as a joke after I told him to ice it so we could have it on Friday.  I’ll include a picture of our hospital celebration when I figure out how to get pictures from my new phone onto my computer.  We did get out on Thursday and drove to Swampscott for lunch by the sea.

I’m on furlough both Saturday and Sunday.  Yesterday, despite showers, we drove out to Concord for an afternoon with Cory Lefebvre at her beautiful country home. I felt like a real person eating lunch and having conversation in a beautiful natural setting for the second time in a week.  I am overcoming my “hospital patient” mentality.  Today I’m seeing EDS friends; Susan Langle was a delegate from NH to the Episcopal General Convention.  We are all looking forward to conversation about Susan’s stories of the Convention.

From all this chatter, you can tell that I’m living life and being conscious of the grace that life can be.  Daniel and I marvel each day about how fortunate we are to live so full of love for our family and friends and indeed to appreciate this love in ways that we did not when we took it for granted and made little time for it.

In Audiobook Land

The blood count watch continues and may for another week, maybe even two weeks.  My platelet count climbs everyday.  Nancy, the senior nurse on this unit, says that in her experience (of 27 years), platelets climb first with white count and then red count following. I take my rising platelets as a good sign that my bone marrow is recovering from the chemo and that we have the Leukemia on the run.  Daniel cooked me a big steak on Tuesday and I ate the whole thing, and my red count was normal the next day.  It dropped off a bit today; I guess it is time for more red meat.

I’m out on furlough most days, leaving the hospital about 1 and returning at 9pm.  Mornings are quiet, sitting in my chair getting my morning antibiotic infusions and doing stuff on my computer.

I have an 80 hour “dramatic” reading of the Bible (New International Version).  Though the producers put music behind the most dramatic and also the most boring parts, on the whole it is easy to listen to.  I’ve just finished II Kings and am about to plunge into the Prophets.  It was tough sledding through Leviticus, Numbers, and Deuteronomy, yet those are the exactly books that I’m least inclined to read on my own, and I wanted to know what they said. 

Living in Limbo

There is good news and bad news about living in limbo.

You guessed it.  The bad news is the stress that goes with our uncertainty;  Even little things create dilemmas.  I spent ten days not being able to think through and act on replacing our espresso machine, which sprung a leak.  Should I invest in a semi-commercial espresso machine and plumb it into our rental apartment?  Who knows how long we will be here?  Or do we just throw another 600 dollars into a home espresso machine, the kind we routinely wear out in 15 months?   I understand Hamlet's soliloquy, though I doubt that he was suffering from caffeine withdrawl and headaches when he could not make up his mind.

And the good news....