SATURDAY'S SPEECH—i COMPLETE MY EULOGY AND THE PEDESTAL DISAPPEARS
Note:
This is what I hoped to say on Saturday. I did manage to say it, but
not exactly the way I wrote it (for one thing I started with a story I
never intended to tell). I thought I would post this for the
record. Someday the grandkids will be able to access the CaringBridge
stories when they want to know more about Grandma Kathy (or Grandma SaSa
as Eliza called her—Eliza started this practice by calling Troy’s mom
(Elaine Schoeneberger) Grandma GaGa. These were not any part of her
early “baby talk” but rather a function of her humor. I do not know why
she landed on Grandpa BlahBlah for me.
HELLO. THANK YOU FOR HELPING US CELEBRATE.
STARTING ON MONDAY, MAY 9, I USED CARINGBRIDGE TO POST 5PARTS OF MY EULOGY TO KATHY.
TODAY I WANT TO FINISH MY EULOGY.
BUT FIRST, I WANT TO CHANGE THE STORY ABOUT HER REBIRTHPARTY.
IN
EARLY MARCH, SHE SAID SHE WANTED TO INVITE EVERYONE WE KNEW TO COME TO
OUR HOUSE AND CELEBRATE THE 4TH ANNIVERSARY OF HER STEM CELL TRANSPLANT.
SHE WANTED THE PARTY ON MAY 14, AND WHEN SHE WAS DYING SHE ASKED ME TO
STILL HAVE THE PARTY.
I KNEW KATHY LIKED TO BRING PEOPLE
TOGETHER SO THEY COULD STRENGTHEN THEIR BONDS. BUT SHE ALSO WAS NEVER
COMFORTABLE BEING THE CENTER OF ATTENTION. SO ALTHOUGH I KNEW THERE WAS
SOMETHING DIFFERENT ABOUT HER “REBIRTHDAY” PARTY REQUEST, I WENT AHEAD
WITH IT. HER SISTER BETSY TOLD ME A FEW NIGHTS AGO THAT SHE THOUGHT IT
WAS UNLIKE KATHY ALSO.
AS WE WERE PLANNING FOR TODAY,
ONE OF THE INITIAL PLANNERS TOLD ME KATHY HAD QUIETLY SHARED HER MOTIVE
FOR THE PARTY. THE “REBIRTH” WASN’T THE REAL REASON. I WAS. KATHY
TOLD OUR FRIEND THAT SHE WAS WORRIED ABOUT ME. SHE THOUGHT I HAD
BECOME TOO DISCONNECTED FROM FAMILY AND FRIENDS AND THAT I NEEDED TO
RECONNECT. IT REMINDS ME OF THAT O. HENRY SHORT STORY,WHERE THE WIFE
SELLS HER BEAUTIFUL LONG HAIR TO GET MONEY TO BUY A WATCH FOB, BUT THE
HUSBAND SHOWS UP WITH COMBS FOR HER HAIR THAT HE PURCHASED WITH THE
MONEY HE GOT FROM SELLING HIS WATCH. WHILE I WAS TAKING CARE OF HER
KATHY WAS TAKING CARE OF ME.
I HAVE TO TELL YOU, WHEN I
REALIZED WHAT SHE HAD DONE, I HAD TO LAUGH A LITTLE. THERE WERE TIMES
WHEN I USED A LITTLE MISDIRECTION TO PULL OFF A SURPRISE FOR HER, SO I
APPRECIATE WHAT SHE DID.
AND ONE MORE THING---
(KATHY SAID “ONE MORE THING” TO ME SO MANY TIMES THAT“O.M.T.” BECAME A BASIC COMPONENT OF OUR COMMUNICATION).
SO “O—M—T”—
I DO HAVE A PROBLEM I WANT TO ADDRESS.
IN
MY CARINGBRIDGE POSTINGS, I CELEBRATED KATHY’S COURAGE,THE COURAGE THAT
IS NECESSARY IF ONE IS TO HANDLE THE PRESSURES OF LIFE WITH GRACE.
I
PUT KATHY ON A PEDESTAL. SHE HAD CHALLENGES RECENTLY, SHE HAD
CHALLENGES WHEN SHE WAS YOUNG. SHE HANDLED THEM INCREDIBLY WELL. SHE
IS MY HERO. BUT SHE WOULD NOT BE COMFORTABLE ON A PEDESTAL, SO I NEED
TO FIX THAT.
I WANT TO FIX THE PEDESTAL PROBLEM THIS WAY. I AM
TOTALLY CONFIDENT THAT ALL OF YOU KNOW SOME PEOPLE WHO HAVE HANDLED A
VERY DIFFICULT CHALLENGE, PEOPLE WHO HAVE RESPONDED TO PRESSURE WITH
GRACE. THAT IS COURAGE. AND THEIR COURAGE DESERVES CELEBRATION.
DURING
KATHY’S LAST 48 HOURS, I WAS LUCKY TO BE THERE, TO TELL HER THANK YOU,
TO TELL HER I’M SORRY FOR ANY STRESS I ADDED TO HER LIFE,TO TELL HER I
LOVED HER. I WOULD GIVE A LOT FOR THE CHANCE TO TALK TO HER ONE MORE
TIME.
SO WHILE YOU HAVE TIME, I HOPE YOU CAN TAKE SOME
SPECIAL TIME TO TALK TO YOUR HEROES, TO TELL THEM WHY YOU ARE SORRY OR
WHY YOU ARE THANKFUL. ONCE IN A WHILE, INSTEAD OF“LUVYA” SAY ALL THE
WORDS—“I LOVE YOU.” WE CAN MAKE KATHY’S PEDESTAL WAY LESS NOTICEABLE IF
IT IS SURROUNDED BY MORE PEDESTALS.
SHE WOULD APPRECIATE THAT.
OH.
AND ONE MORE THING. ACCEPT IT WHEN SOMEONE THANKS YOU FOR THE WAY YOU
HANDLED A CHALLENGE. ACCEPT IT WHEN SOMEONE THANKS YOU FOR YOUR
GRACIOUS COURAGE. I KNOW WITH CERTAINTY THAT ALL OF YOU DESERVE SOME
TIME ON YOUR OWN PEDESTAL.
WHEN THAT HAPPENS, KATHY’S PEDESTAL DISAPPEARS.
AND SHE WOULD REALLY, REALLY APPRECIATE THAT.
SO THANK YOU. THANK YOU. THANK YOU.
Monday, May 23, 2016
Sunday, May 22, 2016
THE EULOGY--PART IV--GRACE AND PRESSURE AT AGE 15 - By John Dorn
THE EULOGY—IV—GRACE AND PRESSURE AT AGE 15
Kathy’s High School End-of-Year Reports (maybe written by homeroom teachers). These reports were in her scrapbook (where, among other things, she saved the tape she used to make my high school class ring fit her finger. She probably saved the tape because she had lost the ring. I would put a higher value on the tape than the ring).
To me, the reports are priceless. The more I thought about them, the more I realized what they were saying, both directly and indirectly. Given the pressure that confronted her (in later years she told me that a priest had visited the home and told her she might have to drop out of schoo lto support the family) I celebrate how much she flourished between the ages of14 to 17. It is during these years that we became friends (mostly at the Wagon Wheel) and then finally dated in the late summer before our senior year (it was a double date; we went to the movie "On The Beach"--“Waltzing Matilda” was a featured song). At that time I had no clue she was dealing with the issues the nuns reference. Two of her closest friends recently told me they, too, knew nothing about this until I showed them the reports. I would only add that during the summers she worked full-time.
THE FIVE REPORTS
9th Grade: “From last year’s record it looks like she has generally improved. Quite sensitive, rather reserved and quiet. Has a good sense of responsibility. Does very well in art.”
10th Grade: “Kathleen’s father was taken to St. Peter early in year because of nervous sickness. He had previously been in another hospital. Kathleen was much affected. Mrs. Ruddy has been very sensible about it and wants the children to recognize his affliction as a sickness.
Kathleen works in the evening at library. Money is needed.
Good worker. Very cooperative--Kathleen must be watched that she does not overdo it.
11thGrade: Wants to do more than she can really manage. Made a very good homeroom chairman. Not always prompt in assignments. Keen sense of humor. Did excellent job in portraying “Eloise”(school speech competition) Cooperative, likeable.
Interview September 21, 1960—Interested in becoming a teacher of biology—says she would like to teach for six or seven years and then study to become a pediatrician—says she knows this can never work out, but she would be happy if it would in spite of all appearances—is practically supporting herself by working a few hours after school and on Saturdays at the public library—her father is now working again but finds it hard to support the family withou some aid on the part of the children—Kathleen has high ideals and wants to do the right thing—is popular and has been chosen as the Senior Class President.
End of 12th Grade: A good, clean-cut girl—chosen by class as their president, which shows in what esteem she is held by them—always willing to cooperate with faculty—takes corrections well and tries to profit by them—takes part in class discussions and comes forth with some really good ideas and conclusions—has high ideals and follows through—well-liked by the faculty and the student body—wants to attend the College of St. Teresa, but will have a rather hard time because of finances.
Kathy’s High School End-of-Year Reports (maybe written by homeroom teachers). These reports were in her scrapbook (where, among other things, she saved the tape she used to make my high school class ring fit her finger. She probably saved the tape because she had lost the ring. I would put a higher value on the tape than the ring).
To me, the reports are priceless. The more I thought about them, the more I realized what they were saying, both directly and indirectly. Given the pressure that confronted her (in later years she told me that a priest had visited the home and told her she might have to drop out of schoo lto support the family) I celebrate how much she flourished between the ages of14 to 17. It is during these years that we became friends (mostly at the Wagon Wheel) and then finally dated in the late summer before our senior year (it was a double date; we went to the movie "On The Beach"--“Waltzing Matilda” was a featured song). At that time I had no clue she was dealing with the issues the nuns reference. Two of her closest friends recently told me they, too, knew nothing about this until I showed them the reports. I would only add that during the summers she worked full-time.
THE FIVE REPORTS
9th Grade: “From last year’s record it looks like she has generally improved. Quite sensitive, rather reserved and quiet. Has a good sense of responsibility. Does very well in art.”
10th Grade: “Kathleen’s father was taken to St. Peter early in year because of nervous sickness. He had previously been in another hospital. Kathleen was much affected. Mrs. Ruddy has been very sensible about it and wants the children to recognize his affliction as a sickness.
Kathleen works in the evening at library. Money is needed.
Good worker. Very cooperative--Kathleen must be watched that she does not overdo it.
11thGrade: Wants to do more than she can really manage. Made a very good homeroom chairman. Not always prompt in assignments. Keen sense of humor. Did excellent job in portraying “Eloise”(school speech competition) Cooperative, likeable.
Interview September 21, 1960—Interested in becoming a teacher of biology—says she would like to teach for six or seven years and then study to become a pediatrician—says she knows this can never work out, but she would be happy if it would in spite of all appearances—is practically supporting herself by working a few hours after school and on Saturdays at the public library—her father is now working again but finds it hard to support the family withou some aid on the part of the children—Kathleen has high ideals and wants to do the right thing—is popular and has been chosen as the Senior Class President.
End of 12th Grade: A good, clean-cut girl—chosen by class as their president, which shows in what esteem she is held by them—always willing to cooperate with faculty—takes corrections well and tries to profit by them—takes part in class discussions and comes forth with some really good ideas and conclusions—has high ideals and follows through—well-liked by the faculty and the student body—wants to attend the College of St. Teresa, but will have a rather hard time because of finances.
Saturday, May 21, 2016
EULOGY--PART III. THE GRACE - By John Dorn
THE EULOGY—PART III—THE GRACE
I recently found this handwritten draft of a letter in Kathy’s appointment book. I’m guessing it was written late in 2015. She used it to guide a visit with her primary dermatologist (wonderful Dr.)
I considered adding a list of her prescribed creams, lotions, ointments and drops (it is quite complex) but decided to just let her voice be heard.
Dear Dr. B.—
First, I want to thank you and all the other derm docs,nurses, and clerical staff for the excellent care you’ve provided me as we try to sort through this very complicated case. GVH, lichen planus, squamous cell carcinoma and just plain old advancing age have made it difficult to diagnose and treat. I so appreciate the effort.
I’m not sure how much time has been allotted for today’s appointment, but I have a few things I’d like to discuss—if we need to schedule another appt. I’m fine with that.
I believe the purpose of today’s consultation is to: check the wound on my right ankle, review suspicious spots, check fungal infection (breast), and determine how to proceed with future treatment.
I am particularly interested in getting a better sense of what the future may hold.
Some questions, concerns…
1. I’m experiencing a lot of pain from my feet to my scalp, most of it emanating from my feet, both lower legs and my fingers. I’ve been using thee prescribed ointments although I admit to skipping a step or two.
2. I’ve been taking oxycodone with a combo stool softener and laxative. I worry about having another bout of diverticulitis (I was hospitalized in early June with painkiller-induced constipation).
3. I have an appt. scheduled with a therapist to discuss pain management and end of life issues.
About that last part…End of Life
I know you can make no predictions, no guarantees, but I need to get a better grip on what I might expect. Today I’d like to find out how much more cancer I need to have removed. Bottom line: if it’s going to be one more procedure after another on many (as I view it) suspicious areas, I don’t think I can handle it. I am grateful the transplant afforded me 3&1/2 more years of Quality Life, but I am in a downturn now and feel the quality has diminished. Because of the pain I am experiencing, I am less mobile and active. It’s taking a toll.
Depending on today’s visit, my plan is to go for another 2 months. If there is improvement and/or a realistic chance of improvement, then we can proceed as usual.
If the prognosis is too speculative and there is very little light at the end of the proverbial tunnel, then I am prepared to discontinue treatment and start palliative care and/or hospice.
Am I overstating the situation?
With all my heart, I hope so.
Kathy
TOMORROW:GRACE UNDER PRESSURE AT AN EARLY AGE
I recently found this handwritten draft of a letter in Kathy’s appointment book. I’m guessing it was written late in 2015. She used it to guide a visit with her primary dermatologist (wonderful Dr.)
I considered adding a list of her prescribed creams, lotions, ointments and drops (it is quite complex) but decided to just let her voice be heard.
Dear Dr. B.—
First, I want to thank you and all the other derm docs,nurses, and clerical staff for the excellent care you’ve provided me as we try to sort through this very complicated case. GVH, lichen planus, squamous cell carcinoma and just plain old advancing age have made it difficult to diagnose and treat. I so appreciate the effort.
I’m not sure how much time has been allotted for today’s appointment, but I have a few things I’d like to discuss—if we need to schedule another appt. I’m fine with that.
I believe the purpose of today’s consultation is to: check the wound on my right ankle, review suspicious spots, check fungal infection (breast), and determine how to proceed with future treatment.
I am particularly interested in getting a better sense of what the future may hold.
Some questions, concerns…
1. I’m experiencing a lot of pain from my feet to my scalp, most of it emanating from my feet, both lower legs and my fingers. I’ve been using thee prescribed ointments although I admit to skipping a step or two.
2. I’ve been taking oxycodone with a combo stool softener and laxative. I worry about having another bout of diverticulitis (I was hospitalized in early June with painkiller-induced constipation).
3. I have an appt. scheduled with a therapist to discuss pain management and end of life issues.
About that last part…End of Life
I know you can make no predictions, no guarantees, but I need to get a better grip on what I might expect. Today I’d like to find out how much more cancer I need to have removed. Bottom line: if it’s going to be one more procedure after another on many (as I view it) suspicious areas, I don’t think I can handle it. I am grateful the transplant afforded me 3&1/2 more years of Quality Life, but I am in a downturn now and feel the quality has diminished. Because of the pain I am experiencing, I am less mobile and active. It’s taking a toll.
Depending on today’s visit, my plan is to go for another 2 months. If there is improvement and/or a realistic chance of improvement, then we can proceed as usual.
If the prognosis is too speculative and there is very little light at the end of the proverbial tunnel, then I am prepared to discontinue treatment and start palliative care and/or hospice.
Am I overstating the situation?
With all my heart, I hope so.
Kathy
TOMORROW:GRACE UNDER PRESSURE AT AN EARLY AGE
Friday, May 20, 2016
THE EULOGY--PART II--A FINAL MEMORY - By John Dorn
THE EULOGY—II—A GOOD MEMORY OF THE LAST HOURS
I cannot begin to imagine how difficult it would be if the love of my life died on an airplane that crashed into the middle of an ocean. When Kathy said “We won’t be going home” at least I knew I had some time to say goodbye. In the final forty-eight hours I was able to say “Thank You” multiple multiple times. I could say “I’m Sorry” for any stress I added to her life. I said “I love you” over and over again. I was able to say these things, stroke her hair, gently rub her shoulder and arm, and softly sing bits and pieces of songs we sang to our kids and grandkids. At one point I said to her nurse at the time (Rosemary—she lost her spouse after 36 years of marriage) that I would put my hand on Kathy’s forehead and pretend that she knew I was here. Rosemary responded immediately: “She knows exactly where you are every second.”
Rosemary was right. At some point I told Kathy that I had said “I love you” so many times that I would not say it anymore. I would just hold her hand and say “ditto.” I don’t remember if tha twas one of the times Kathy opened her eyes, but I do remember that her gasp was one of delight. I knew she knew where I was when she squeezed my hand and with a bit of a laugh said “Ah—Ditto.”
The rest of the story: When we were seventeen, we were willing to share our feelings for one another but public displays of affection were not our thing. So rather than do or say anything overt, we were satisfied with referring to our affection by saying “Ditto” when the situation seemed to warrant it. I will admit, I hesitated to even share this flashback to our teenage years, but it is my final memory of Kathy and I am so, so glad I thought of saying “ditto” while the clock ticked away n room 402, C wing, 5th floor of the UofM Fairview Hospital on Harvard St.
PS:Totally by chance, I read a poem a few weeks ago that spoke to me.
I rearranged the final lines a bit because I am putting them in a different
context. I wish I had written them.
“There we sit, together, one last time
As all that sweetness slowly disappears.
What remains, the memory of how
She taught us all the way we need
To learn to live with wasting.”
Tomorrow: Kathy's Turn To Be Heard
I cannot begin to imagine how difficult it would be if the love of my life died on an airplane that crashed into the middle of an ocean. When Kathy said “We won’t be going home” at least I knew I had some time to say goodbye. In the final forty-eight hours I was able to say “Thank You” multiple multiple times. I could say “I’m Sorry” for any stress I added to her life. I said “I love you” over and over again. I was able to say these things, stroke her hair, gently rub her shoulder and arm, and softly sing bits and pieces of songs we sang to our kids and grandkids. At one point I said to her nurse at the time (Rosemary—she lost her spouse after 36 years of marriage) that I would put my hand on Kathy’s forehead and pretend that she knew I was here. Rosemary responded immediately: “She knows exactly where you are every second.”
Rosemary was right. At some point I told Kathy that I had said “I love you” so many times that I would not say it anymore. I would just hold her hand and say “ditto.” I don’t remember if tha twas one of the times Kathy opened her eyes, but I do remember that her gasp was one of delight. I knew she knew where I was when she squeezed my hand and with a bit of a laugh said “Ah—Ditto.”
The rest of the story: When we were seventeen, we were willing to share our feelings for one another but public displays of affection were not our thing. So rather than do or say anything overt, we were satisfied with referring to our affection by saying “Ditto” when the situation seemed to warrant it. I will admit, I hesitated to even share this flashback to our teenage years, but it is my final memory of Kathy and I am so, so glad I thought of saying “ditto” while the clock ticked away n room 402, C wing, 5th floor of the UofM Fairview Hospital on Harvard St.
PS:Totally by chance, I read a poem a few weeks ago that spoke to me.
I rearranged the final lines a bit because I am putting them in a different
context. I wish I had written them.
“There we sit, together, one last time
As all that sweetness slowly disappears.
What remains, the memory of how
She taught us all the way we need
To learn to live with wasting.”
Tomorrow: Kathy's Turn To Be Heard
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
(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
Wednesday, May 18, 2016
A EULOGY: GRACE UNDER PRESSURE (intro) - By John Dorn
THE EULOGY—GRACE UNDER PRESSURE (INTRO)
I am sure there are people who could verify that I have been able to talk for a long time even if I had very little to say. But for Kathy’s celebration I have very much I want to say with almost no ability to say it. I can’t control when a wave of emotion will suddenly surface and overwhelm me so I’ve decided to write what I celebrate. (I may record some comments for the 14th) The added advantage of writing what has become my eulogy to her is that it is available to the family and friends who can’t be in North Mankato on the 14th. And it will stay available if our grandkids are more curious when they are grandadults. And folks who can celebrate on the 14th don’t have to watch me blubber and slobber while I---speak---very---slowly---for---a---very---long---time.
In Kathy’s obituary I implied the essence of my thoughts without explicitly expressing it. The words belong to Aung San Suu Kyi (with a nod to Ernest Hemmingway):
“Fearlessness may be a gift but perhaps the most precious thing is the courage acquired through endeavor, courage that comes from cultivating the habit of refusing to let fear dictate one’s actions, courage that could be described as ‘grace under pressure’—grace which is renewed repeatedly in the face of harsh, unremitting pressure.”
I’ll expand a bit on the obituary by sharing some thoughts of mine, thoughts from a letter she wrote, and thoughts from a few of her teachers.
Bottom Line For Today: A hero has courage. Kathy had courage. Kathy is my hero.
To Be Continued.
I am sure there are people who could verify that I have been able to talk for a long time even if I had very little to say. But for Kathy’s celebration I have very much I want to say with almost no ability to say it. I can’t control when a wave of emotion will suddenly surface and overwhelm me so I’ve decided to write what I celebrate. (I may record some comments for the 14th) The added advantage of writing what has become my eulogy to her is that it is available to the family and friends who can’t be in North Mankato on the 14th. And it will stay available if our grandkids are more curious when they are grandadults. And folks who can celebrate on the 14th don’t have to watch me blubber and slobber while I---speak---very---slowly---for---a---very---long---time.
In Kathy’s obituary I implied the essence of my thoughts without explicitly expressing it. The words belong to Aung San Suu Kyi (with a nod to Ernest Hemmingway):
“Fearlessness may be a gift but perhaps the most precious thing is the courage acquired through endeavor, courage that comes from cultivating the habit of refusing to let fear dictate one’s actions, courage that could be described as ‘grace under pressure’—grace which is renewed repeatedly in the face of harsh, unremitting pressure.”
I’ll expand a bit on the obituary by sharing some thoughts of mine, thoughts from a letter she wrote, and thoughts from a few of her teachers.
Bottom Line For Today: A hero has courage. Kathy had courage. Kathy is my hero.
To Be Continued.
Wednesday, May 16, 2012
Hi...we have moved
Hi everyone! Just in case you've checked in here, I want to let you know that you can find all of the up-to-date information on my mom on her CaringBridge site. Just click here to be taken to all the news that's fit to print.
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