Thursday, May 19, 2016

EULOGY--PART I--THE PRESSURE - By John Dorn

THE EULOGY—PART I—THE PRESSURE

(Some of these details were in earlier posts but I thought they deserved repeating)

On the 7th day in May of 2012, the Doctors completed the destruction of Kathy’s original immune system.  A bag of stem cells from her brother Rob were then transplanted.  This is about as transformative and fundamental as any medical treatment can be. Giving Kathy new DNA was the best chance she had to defeat her blood  cancer (MDS) and form a bond with our four grandkids.  And the transplant was successful in that regard—the blood cancer was eliminated.

But with any transplant, rejection is an issue. When Kathy donated a kidney to her brother Tom, the concern was that his body would try to expel it.  The reverse is true for a stem cell transplant.  It is the new immune system (the Graft) that will, in many cases, attack the body(the Host).  We’ve met people whose GVH attacks differ greatly in terms of frequency and severity.  They range from mild to even non-existent to more difficult ones, like Kathy’s.

In Kathy’s case, the GVH went after her skin and gradually paved the way for other diseases: lichen planus, squamous cell carcinoma, and what appeared to be scleroderma.  Over time, this gang of four went after scalp, her eyes, her ears, her mouth (in late December her dentist said there was nothing he could do about the rampant tooth decay—we drove through the community festival of lights and cried almost the  whole time).  This foursome also attacked her throat, her hands (fingernails were mostly gone, fingertips were raw) her torso, her legs,her feet (toenails disintegrating, bottoms raw, so we worked dead skin into position until I could snip it with a scissors and then massage with whatever cream or ointment was best for that area). Of course the many meds that were used, over time, probably did some damage as well (maybe they triggered her “Digestive Issues”—they don’t add those “can also cause” warnings on commercials for no reason). 

But I need to emphasize that all this trouble was gradual. It varied in frequency and intensity. It receded on good days, or during some good hours on most days,or during some good hours on some days. Sure she had times when it got to her, but she was very good at making plans to do something special and then working out the details over time.  She knew how to choose her attitude.

In February, the diseases took control.  We had to call 911 and get help moving her to the ER two blocks from our house;after 5 hours there, she was taken by ambulance up to the UofM for a five day stay.  In early March she had started to plan a party for her “4th birthday”—or “rebirth day”—to celebrate the anniversary of her stem cell transplant. She told me she wanted to have it at our house, and we would invite everybody we knew and all our neighbors (many are friends, but we don’t know some of the newer ones).  She thought May 14th would be the best day.  I did notice that she made no mention of what we would do to prepare the house—she liked her home to be clean and presentable for company, so the omission was noticeable.  And she was gracious in a way that I did not know at that time.  (I’ll deal with that in a later posting)

Her March planning was interrupted by a twelve-day stay in two hospitals.  Similar to February, the incident started with another call to 911.  After one day stay in the Mankato hospital Kathy was taken by ambulance to the UofM.  But as she improved in March, she talked some more of what we would do to have the May 14th celebration.  Friends would bring cakes, it would be an open house affair, very loose and informal.

Unfortunately,any recuperation in March disappeared as April approached.  Her lower legs, always a real problem with blistered skin, started to swell more and more, no matter how she positioned them.  Then the edema progressed to the upper legs.  We worked via telephone with her Doctor and upped the dose of lasix but nothing helped.  In March we had said no more ambulances, no more hospitals, but we had no choice.  We wanted to go directly to the UofM instead of stopping first at the Mankato ER,  but ambulances aren’t a taxi service so we did our best to make the trip go as smoothly as possible. We called 911 on the morning of April 5th and by early afternoon we were back at the UofM, 5th floor, room 402. 

At the UofM I always stayed in the room with Kathy (32days in 2012, 5 in February, 12 in March—it is an interesting experience to live at a hospital when you are not a patient).  I was there when a Dr. came into the room very early in the morning of March 6 and told her that her kidney was not functioning.  I know he said other things, but all I heard was that her kidney was not functioning. When he left, I got off my padded bench/bed and went to the side of her bed and stroked her arm.  She looked and me and said, very simply in a voice crackling from the perpetual dryness in her mouth and throat— “We won’t be going home.”
I am sure, I was sure then and am still sure now, that she said that to comfort me.  She wanted to be certain that I knew she was fully aware of what was going on and that she accepted it.  Maybe a little bit of her message was intended to make sure that I, ever the optimist, got it. The fight was over.  Later she negotiated a few details with her lead transplant Doctor (he is a wonderful Doctor, programmed to never give an inch to a single disease cell) and she agreed to a few medicines that could help reduce the swelling and thus give her some comfort.  She also accepted few more powerful machines that might help her breath more easily.  But no more talk of dialysis or similar things.

However,after saying “we won’t be going home,” the next sentence from her mouth was this question: “Will you still have my party?”

There are some folks who would tell you I made a living not answering the questions I was asked, and I guess I do know how to do that.  But this was a question that had only one answer, and it was the only answer I wanted to give.  Yes. Of course. Yes. 

And that is why we will celebrate her life on May 14th.  The only change was the venue.  My kids and I debated it a bit, but ultimately the concern that a rainy day would spoil the party convinced us to find a place with more parking.  And more room.


TOMORROW—A GOOD MEMORY IN THE LAST HOURS

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