Tag Archives: cancer

Go In Peace and Worry Not, Hallelujah

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date: Dec. 10, 2008

subject: This is VERY long. You may want to print it before you read it . . .

Dear Friends,
Dad died Monday, December 8th at 11:15 a.m. His passing was very peaceful.
As many of you know, Dad went to St. Mary’s Residential Hospice center on Wednesday, December 3rd. Within an hour of his arrival, he wanted to lay down and take a nap. He never got out of the bed again. Late that afternoon he did awake and have one last latte with his best friend, Reese. Our sister-in-law Sheila sat with him early Thursday morning and joined him for his last meal (which he only partially ate, he had enjoyed his real last meal during our impromptu picnic the day before). Afterwards, he had no more interest in food.
Mom stayed with him Wednesday and Thursday nights; Hannah, Friday night; and I, Saturday night. The three sisters then stayed with him Sunday night. As he slept he slowly withdrew from this world. The hospice books told us that he was preparing himself for separation from this world. The books also spoke of someone lingering only if they have any fear of death or “unfinished business.” To ease his release, we each told him in our own way that it was okay for him to go when he was ready. “We are all fine and you don’t need to worry about us. We will take care of Mom.”
The nurses thought that Sunday was most probably the day. Jan arrived from Pittsburgh, and some other family members also gathered. As I wrote to you earlier, in the late afternoon of Sunday, the immediate family and Dad’s best friend gathered around Dad to read his favorite Psalms (121), sing some hymns (albeit in our pitiful but loving way) and share good DAD stories. As you can imagine, as we all spoke fondly of Dad, belly laughs came as well as tears.
Dad’s last night was peaceful. He slept comfortably and even began to snore in his more typical way. I made my nest in his wheelchair with its deluxe $400 cushion–tipped the chair way back and set my feet upon an adjacent pillowed chair. Hannah took the not-so-very-comfortable reclining chair. Jan set up her camp at the table where she was finishing 10 pages of photos with relating copy . . . pictures of Dad as a kid, Dad with his grandchildren, Dad at the beach, etc. (remember, she’s the Creative Memory pro).
Just about when Hannah and I had managed to sort of relax for half a moment, Jan said, “I need some copy.”
“That’ll be Susan,” Hannah replied.
The last thing Jan was designing was a large poster. She wanted to add a few lines about Dad. The first two sentences came easily, then it all just started sounding incredibly hokey and NOT like Dad. I said to Hannah under my breath, “He could also be ornery too.” Hannah burst out laughing and said, “Put that in, I like it.”
We three kept working on it when I said, “Well, we all know that Dad’s not your average bear.” That made the cut too. I volunteered to take the guff from Mom when she reads it and tells us it’s not proper (earlier in the evening she’d told us, “I don’t want any of that digital nonsense at my funeral. It’s just not proper!”)
Dad’s last morning (in this world) was incredibly peaceful and beautiful. Mom and Tony (Tony graciously offered to take Mom home Sunday evening) arrived around 6:30 a.m. Jan has just laid down on the small 2 person couch a few hours prior. So she proceeded to move to a more comfortable couch down the hall in the family dining room, I took her place on the small couch. About an hour and a half later after a deep, deep sleep, I awoke to find myself in the room with just Dad and Tony. Mom and Hannah had gone to IHOP for breakfast. I was awake but just deeply exhausted, so I chose to stay comfortably cozy on the couch with Dad’s tennis quilt wrapped around me (Hannah gave Dad this, his quilt on his 87th birthday on the 8th of March earlier this year.
It’s very colorful with tennis rackets and balls woven into the design, as well tennis type prints throughout). Tony was simply sitting at Dad’s side holding his hand. He then pulled out his ukulele and played a variety of pleasant tunes. He also began singing (something that you who know Tony know he rarely does). It was beautiful.
“Row, row, row your boat, gently down the stream. Merrily, merrily, merrily, merrily, life is but a dream.”
When he started playing “Michael row your boat ashore” I couldn’t help but join in and sing. “Hallelujah. Michael row your boat ashore, hallelu . . .u jah.”
Next came, “Daddy loves us and we love him, Hallelu . . .u jah. Daddy loves us and we love him. Hallelujah.” Followed by, “Go in peace and worry not, Hallelujah. Go in peace and worry not. Hallelu . . u jah.”
Tony continued to play and sing. “Oh when the Saints, go marching in. Oh when the Saints go marching in. Oh how I want to be in that number, when the Saints go marching in.”
I contemplated getting up and going to Dad’s side but thought, “No, he knows how exhausted I am and he’d want me to rest.” I then closed my eyes and gave thanks to Dad for his wonderful early birthday gift. As I remembered him singing and then bursting out laughing, “Happy Birthday me again Daddy!” (a unique trait of mine–since childhood I would ask Dad, “Happy Birthday me again Daddy!” and he would), Dad sent me another gift. I don’t know how else to describe it but to say that within my very core I felt my father’s presence. He was within me, yet separate from me. With my eyes closed yet fully awake I saw his right arm (which was also my right arm) rise up and show me how he had held me in the palm of his hand when I was newly born.
And then I knew (I suppose this may sound presumptuous to some, but I really felt it in the core of my being) what he’d been doing for the past four days as he slept, he had been going through memory after memory, looking at it, cherishing it and then moving on.
I stayed in my cozy nest for a few minutes more before Tony sat down his ukulele and joined me. Still reclining and wrapped in the quilt, I draped my legs over his. We cuddled and I told Tony what Dad had just shown me.
A few minutes later, my brother Dayton arrived. He asked if there’d been any changes. “No, not really. He’s resting well and breathing more calmly. But his feet are very cold now.” Dayton checked them and said, “One’s cold and one’s warm.” “It keeps changing,” I replied. Jan then returned from her nap in the family dining room. She readied herself for a shower and disappeared into Dad’s bathroom. Dayton sat down at the table to open his address book for numbers of friends to call. Tony and I stayed snuggled on the couch.
“His breathing has stopped,” Dayton said as he rose from the table and went to Dad’s left side. Tony and I got up and stood next to Dad’s right. We waited and maybe 15 seconds later there was a very short exhalation, more like a muscle spasm really. Dayton rapped on the door and called for Jan to come out. There was one final puff and he was gone.
I cradled Dad’s head and sang, “Go in peace and worry not, Hallelujah. Go in peace and worry not. Hallelujah.”
Mom and Hannah came in the room maybe 30 seconds later. We held hands and gathered around Dad and gave thanks for his life.
I’ve wondered at times whether it was appropriate for me to write such personal thoughts and experiences to you all, but then your replies would come and I’d feel a confirmation of how connected we all are and that you DID want to be informed of the changes . . . . I thank you ALL for “being there” in spirit and remembering my family in your thoughts and prayers. I know I’ll miss my Dad, but I can’t help but feel so very thankful for his very full life, and for the time we got to spend with him saying goodbye, and for his quick departure. And mostly, I am just so very thankful for getting to have him as my father.
And as if this missive wasn’t long enough, I’d like to end with a bit of humour. It ends up that his older sister Hannah was mistakingly included in the “preceded by” section of the obituary (she’s still alive). No one, and I mean NO ONE, caught it before it went to print! (Please realize that Dad died at 11:15 a.m. on Monday and the deadline for the obit was 4 p.m., I think it’s amazing we got anything in there on the same day at all. Well yes, we had a draft written, but still . . .)
So, guess who called yesterday morning saying, “I’m still alive!”
We’re all calling it a Freudian slip . . .
love and hugs to you all,
aloha,
Susan

Enjoy A Picnic Whenever & Wherever It Appears, for It May Be Your Last

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date: Dec. 7, 2008

subject: The “end” is near . . .

Dear wonderful Girlfriends,

Dad’s course really took a turn on Thursday . . . he has begun his journey and the “end” is near. Jan, Hannah and I (the three sisters) are here in the room (Jan brought her computer, turned it on and found that there is Wi-Fi here) and we’re staying the night together.

Earlier, the entire family (the four kids; my husband, Tony; Dwight, Hannah’s husband; Mom and Dad’s best friend, Reese) gathered around Dad and sang songs, read Psalms 121 (Dad’s favorite) and #130. We then each shared many, many good memories. It was truly beautiful.

Then we sat down to a dinner of salad and hamburgers that Dayton brought (we hadn’t had a “real” meal all day and everyone was ravenous). We obviously don’t know when Dad will go . . . but we feel it’ll be when things quiet down. Mom said very comforting words to Dad including, “I know you’re tired Clyde. It’s okay to go . . . we’re all fine, you don’t need to worry about us.”

Yes, of course I’ll miss my Dad; but at this moment, I can’t help but feel so very thankful for the good, long life he’s had. He has obviously touched so MANY people. What a gift my siblings and I have had to have him as a father. I will carry him in my heart forever . . . when he was ill and I was still at home, I carried him perched on a pedestal in my heart as I went for bike rides . . . now I feel like he’ll have a permanent place there.

Love to you all and mahalo for your many, many wonderful and caring emails.

Susan

p.s. There’s one story I didn’t share . . . our last “picnic” with Dad.

Tony was driving Dad and Mom from the Patricial Neal Rehab center in downtown Knoxville to St. Mary’s hospice facility in the north part of town. Jan and I were in Dad’s Subaru Baja truck. Jan had asked Dad if he wanted to stop at a drive-through for lunch. “No, “ he adamantly replied, “I want to go straight there.” But after we passed a Wendy’s, Jan’s cell phone rang. “Dad wants to stop for lunch,” Mom said. We all turned around and pulled into a Wendy’s.

We parked side-by-side and went inside to order lunch. It was a beautifully clear day (amazing how that has happened on the days when Dad’s been in transit . . . it’s been so cold and rainy on all the other days). Tony, Jan and I piled into the back of Mom’s Toyota Avalon. Mom sat in the driver’s seat and Dad in the front passenger seat.

First Dad devoured (and I mean devoured) his chili. “Yum, this is good!” he said. Then he devoured his burger. Again, “Yum!” Next followed the frosty and a milk. At one point I said in my typical optimistic way, “This is fun!” Dad burst out laughing. He didn’t say anything, but I could feel him thinking, “You always have so much fun Susan doing the simplest things.”

That was our last picnic with Dad. What a gift!

That was on Wednesday the 3rd. Later that same afternoon he said he was tired. He’s been sleeping ever since. The two booklets that Hospice has on hand have been incredibly helpful in describing the journey he’s currently on. And reading them, we realized that he had begun the journey several weeks earlier. I think my Dad in his ever tenacious way had been giving every moment ALL of his energy. Once he arrived here he could feel (I think) this special place’s spirituality and that he had arrived at a safe haven. What a gift we have been given. May this and all hospice facilities continue to be blessed for the wonderful care and compassion they provide so many people.

Love to you all

Bonnie Meets Clyde

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date: December 5, 2008

subject: Dad’s in a wonderful hospice facility now . . .
Dear Girlfriends,
I sent this note to a few of you on Wednesday. I don’t know why, but on Wednesday I didn’t feel ready to send it to you all; but you’re all part of the family now, so I thought I should pass it on . . . An update will follow in a few . . . .
And as some of you know, today is my birthday. I’m on my way over to be with Dad. Hannah’s there now. Things have changed and he has one foot in the next life . . . we’re happy he’s sleeping peacefully. Early Wednesday morning he sang Happy Birthday to me . . . we hugged, he talked about my birth . . . I’m very blessed.
love to you all,
Susan
written 12/3/08:
We moved Dad today to St. Mary’s in residence hospice . . . As I was putting Dad’s right leg on the ground in preparation for a transfer from the car to the wheelchair, he said, “I don’t want to go in.” Tears were running down his face. I stopped what I was doing and made room for my sister Jan to sit in the wheelchair, which was right next to the car. Tony sat in the driver’s seat next to Dad and I kneeled in front of him. He talked and cried; we comforted him and hugged him. After a bit he said, “Okay, I’m ready to go in.” He’s so concerned about being “abandoned” inside this place . . . we reassured him that we’re not abandoning him and that if he’s really unhappy there, we’ll figure out a way to be able to bring him home. He said, “I have no doubt that you wouldn’t do that, you ALL have so much gumption.”
My man knew exactly what to say, “Clyde, we all learned it from you. You’re our role model. You’re a very strong man.”
He turned to Tony and said, “Thank you.”
(*)
Poor Dad . . . in September he won a 3-hour tennis match in a national tournament and now he’s essentially a paraplegic with terminal stage 4 cancer . . . it’s been a lot to absorb.
We’re continuing to take it one day at a time . . . right now T and I are scheduled to return on the 11th. I may extend my stay . . . I’ll see.
When we left Dad this late afternoon (Mom’s sleeping over with him on this first night in a new place) he was really looking the worse we’ve seen him . . . he was chilled, then got warm and seemed feverish, he just seemed so . . I don’t really know how to say it . . so, uncomfortable. He said he was in pain but he didn’t know where. His hands were so swollen. We left him with his feet elevated and hands resting on his chest. I hope he and Mom have a restful night . . . will keep you posted.
aloha, Susan
(*) What I didn’t write at the time because it took all I had to simply write what I did, was that once Dad had made up his mind to exit the car and enter what he knew was to be his last resting place, he put on his smile and noticed a nice looking, petite blonde volunteer in a Christmas sweater who had just stepped outside of the building into the bright sunshine. She approached my Dad with a huge grin on her face. Dad, ever the flirt, grinned right back.
“Why hello there!” she said, “I’m Bonnie and I’m happy to meet you.”
“Bonnie,” he said, very matter-of-factly, “Well, you know what my name is, don’t you?”
She looked puzzled and replied, “No, I don’t.”
“Well it’s Clyde, Bonnie.”
They enjoyed a moment, which us outsiders can only imagine. And with that, he entered the hospice facility.

A Thanksgiving to Remember

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date: Nov 29, 2008 at 9:16 PM

subject: Aloha from Tennessee
Aloha Girlfriends,
The notes you’ve sent have been beautiful. Mahalo.
Here are excerpts from a few of the emails . . .
Sending much Love & Aloha from California….take care of yourself
and loved ones.Peace be with you and Tony,
Fond Aloha,
Regina
I am sure there will be no better medicine for your dad then to have you there. 
Adie
I am so sorry to hear this news of your Dad. It is a good idea for you to be home with your family now, and I am sure they will find that being together is a huge source of strength for everyone . . .
Love,
Liz
These are the toughest of times….Even when the principals involved are intelligent, knowledgeable, fully aware of what is happening and as positive, pragmatic and prepared as possible, it is still an unbelievably difficult path to walk down.  I know your father is brave and courageous…it’s great that he knows he is well loved and honored…Please tell him of his “fan club” in Hawaii (your mother too) . . Know that you and yours are in our  thoughts daily  and forever in our hearts.
Take care of yourself, Susan and hold Tony close when he arrives in Tennessee . . . This is a most important chapter in your life.
Much love,
Char
Chocolate ice cream and smiles truly can make a world of difference… I am very happy to hear about your dad encouraging the lady and making others laugh, laughter is such good medicine! I especially enjoy the visual of the orange top and Tabasco pants!! It must be so incredibly hard to keep ones spirit up with what he is enduring, but having you there obviously brings joy and consolation. What a “ride” you guys have been on, with all the back and forth about where he was to go and all. Hats off to you and Hannah for insisting on the therapy that your dad should have been receiving, and look where it took him! . . .  I can picture all the family gathered together in that updated kitchen to give thanks for everything your dad has brought into this world, a celebration of his life  . . .
Love,
Jocelyne
Okay, I really am there with you on the “sharing the moment with chocolate ice cream!” And no, it doesn’t get any better than that! We all love you, support you, and are there with you in spirit, holding your hand in the hard moments and celebrating every joyful sharing! Wishing you many more special happy times with your dad and your family,
Love you bunches,
there in spirit,
Katie
Wonderful story of courage and caring . . . Our team is like the Verizon ad. We got your back girlfriend.
Adie
This time with Dad is such a gift . . . that has NOT been lost on all of us.
Thanksgiving Day was an absolutely perfect day. Tony and I went up to the hospital early. The sky was clear, clear blue and the cold temperature of last week (20’s and 30’s) had disappeared and was replaced with a pleasant mid to high 50’s.
Dad was sleeping so peacefully when we arrived that we decided to let him snooze for a while. Did I mention that his window faces the “strip” (the college hang-out of bars and restaurants) with the Smokey Mts. in the distance? As both Tony and Dad dozed, I sat in Dad’s wheelchair and gazed out over the buildings to the mountains. The calm was very pervasive. The peace, all-consuming.
Then suddenly it became time to rise and shine. The skeleton crew at the hospital was comprised of some of the best of the best. The mood was cheerful and happy for Dad that he got the “green light” to head home for the day. Tony trotted off to get the car after we got Dad dressed (and most importantly, catheterized). The transfer to the car didn’t got quite as smoothly as when the PT was looking over our shoulder, but no harm was done (Have I mentioned how Tony has just shone at this position of “captain” of the transfers? His experience with his Dad years ago has come to the front of his memory and his experience has proved to be invaluable). It felt good to sit in the back and see the 2 most important men in my life in the front of the car.
“I’d really love a latte,” Dad said once we pulled out of the hospital porte-cochere. In two shakes we found an open Starbucks (surprise, surprise) and I bopped in to place an order. Lo and behold they even sold a New York Times. Now I could gift both of my 2 favorite men.
Standing in line I noticed a father and son in bicycle riding garb. That’s nice, I thought. I glanced up and thought, I know that face, don’t I? “Excuse me, I think we might have gone to high school together . . .” Before I could finish the statement, he shouted, “Susan!” It was Preston, an all-round nice guy, always had been. He and his son had ridden to the strip from west Knoxville. After some fun hugs and general joviality the coffee was ready and I joined my guys.
We gave Dad a small tour down memory lane, part of the campus, the main boulevard with all the high falutin houses, his son’s pest control office/house, the old house we lived in when I was born, the house his brother used to live in. We were just about to turn right up the steep hill to Mom and Dad’s house when he yelled, “Keep going! Turn left, here. Here!” Safely landed in the Bugg’s driveway, Dad was immediately surrounded by lots of Buggs, the good kind.
Dr. Bugg (retired head of the Physics Dept. at The U of Tenn.) turned to me and asked, “Head nurse Susan, he requested a glass of red. Is that okay?”
“I reckon,” I replied.
More hugs and hellos followed and the party expanded as more neighbors joined us. Soon my Mom even came down the road to join in the fun.
Fortunately before we could wear Dad out before he even made it into the house, the cool air decreed that it was time to move on. The glass was returned (still half full) and Tony drove the patriarch home as Mom and I dragged ourselves up the steep hill.
The rest of the day was right out of a movie; family gathered one by one. Hugs, kisses, quiet tears and LOTS and LOTS of photos (my sister Jan found her calling with Creative Memories).  The family had arranged the dining table so that Dad could still sit at the head, the food turned out perfectly . . . it was just a wonderful day.

Fast forward to 6 p.m. It’d been 7.5 hours since he was catheterized and he’s supposed to be “drained” every 4 to 6 hours. It was time for either to take Dad back or to get down to business. Tony asked, Dad said he’d think about it. Jan asked and Dad said,” I guess I should go back.” But darn it if that Jan didn’t intuit what Dad really meant, “I’d like to stay but I don’t want to put ya’ll out.” So she proceeded to say what needed to be said with charm, style and a heap of real compassion. The next thing we knew, I was crouched in middle of Mom and Dad’s huge bed next to Dad. Hannah was standing next to the bed opening the catheterizing packet. I found myself repeating what the nurses had told us over several instructional sessions, “Don’t touch anything else with that hand now that you have the sterile glove on, and on and on . . . . “ Hannah took a big breath, asked Dad, “Are you alright with this?” He simply nodded as he kept his eyes tightly shut. Okay, Hannah began and
we all began to coach her (much easier to do than the REAL thing!). I looked up and to my right and felt like I was in a tiny amphitheater. There was Mom, Dayton and Jan. Dad’s wife and four children were all with him as we watched BIG sister play the role of head nurse. Amazing. We never could have predicted such a scene. Maybe that one of us would need to do this. But that ALL of us would be there???? And it was all so positive. Only words of encouragement were shouted out on this stage. But when’s it going to come? When’s the urine going to start to flow? We all watched and held our breath as she slowly, slowing kept inserting the Christmas red tube. “There it is!” we all shouted in unison. You would have thought that the Martians had just landed, that’s how loudly we yelled. Then we could relax and just want for Dad’s bladder to empty.
And the next scene is the clincher, the scene-stealer. Once Dad was cleaned up and made presentable, Mom crawled up beside Dad, each was lying on their side and facing the other–two long lost lovers so happy to finally be together. “Now this is what I’ve been wanting, “ said Dad. We unplugged the phone and crept out to give Mom and Dad an hour together before we had to make ready and return to the hospital.

Sigh. Yes, there was not a dry eye in the house.

Oh, and to add to the moment, my girlfriend Katie called right during this fabulous scene of family taking care of dear old Dad. Thanks Katie for calling right then. You somehow added a sense of reality and connection to the world at large, plus, we both know that you’re my third sister . . . .
Love to you all. Thanks for taking the time to read my ramblings and please excuse me for not proofing or even re-reading this before I hit send.
aloha,
Susan

How Can They Know When I Just Found Out?

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date: Mon, Nov 25, 2008 at 9:16 PM

subject: Aloha again from Tennessee
Hi Girlfriends,
I hope this missive finds you all well and happy. Best wishes also for a Happy Thanksgiving.
I thought I would send an update on my Dad.
It’s been a good week at the Patricia Neal Rehab Center. Dad even got to meet the movie star herself (Patricia Neal, in case you didn’t know) when she stopped by on Friday to say hello to all the rehab patients. Tony and my sister Hannah arrived just in time to join us and we have a wonderful picture of the entire gang.
We had a large print made and it’s on Dad’s very large board directly across from his bed. The board is slowly getting filled with all kinds of photos of his grandchildren and well wishes from cousins.
Then this past Saturday evening Dad was a little more tired than normal. He’d been freezing for several days, so we brought out the long john top and layered him with many fuzzy tops. Sunday he slept practically the entire day and we thought he seemed very hot to the touch (Hannah and I held guard on either side of Dad, we’ve become very protective with our dear old pop). A temp was taken and sure enough he had a temperature (102.2). The next thing we knew the medical staff was on all alert: tylenol to lower the temp, an x-ray to examine his lungs . . . The next day we learned that he has a slight case of pneumonia in his left lung. He’s now on antibiotics and the chemo is on hold. Yes, his temperature dropped almost immediately due to the Tylenol.
Fast forward to Monday morning and you’ll find Hannah and me at his side again in the early morning. Hannah was on her way to get some scrambled eggs and a biscuit and jelly for Dad when she noticed a doctor with Dad’s chart. He and two hospital big wigs were discussing something very seriously. Hannah asked, “Are you talking about Dad?” (He’s become EVERYONE’s Dad btw). “Yes,” they replied (practically in unison). “Did you know it says FULL CODE on his chart?” “No, what’s that?”  So, we proceeded to find out that Dad ‘s chart had instructions for full resuscitation and full shocks upon his heart stopping . . . The nice doctor (not THE nice doctor, this doctor sends his dad to THE very nice doctor, but this one is very good too) pulled up a chair and proceeded to make himself very comfortable. He took his time to talk about all kinds of things before he got to the heart of the matter. He explained to Dad what his chart said, Dad replied that of course he wants that. The nice doctor talked about how dignified Dad’s life has been, being in the war, all the good things he’s done and how his death should be dignified as well . . .
Dad slumped down in his chair . . Hannah asked if Dad wouldn’t like to discuss all this with Mom, he nodded,“Yes.” We called Mom and they discussed it. She later told me that she would stand by whatever decision he made. Dad said that he trusts the doctor’s opinion and said that he wanted to change the code.
After the doctor left, Dad said to Hannah and me, “Now who’s going to get those eggs?” Hannah jumped up and said, “I will!”
After she left, Dad and I were quietly sitting alone. He said, “Please tell Katie and Logan (his youngest grandchildren) that I’m very sick and I’m going to die.”
“They know that already, Dad” I replied.
“How can they when I just found out?” he said.
So, my Dad had not really comprehended the severity of his illness. And my sister and I agree that that was fine. He’s been taking it all in as he’s ready. Also, he had prostate cancer 10 years ago, had radiation and a very radical surgery and completely kicked it. His psa always measures 0.0. So, Dad just thought he’d kick this cancer too. The doctor also told him that this particular type of cancer isn’t curable. Unlike the prostate cancer which was.
So, fast forward to today. Tony and I arrived bright and early and had a perfectly ripe avocado for Dad. We even had the vinegar and hot sauce to go with. We three gathered round, Dad ate and Tony serenaded us with his ukulele–pleasant tunes including the Tennessee Waltz. Afterwards we practiced and passed helping Dad make the transfer into Mom’s Avalon–this is in preparation of taking Dad home for Thanksgiving (he can go home as long as he doesn’t have a fever again, please pray for the green light to go home on Thursday, also Katie’s 14th birthday, mahalo).
And this afternoon my sister Jan, Tony and I got training in how to give Dad a bath when at home.
Tones and I left with Dad in his wheelchair with Mom and Jan by his side. We hear that more visitors came after we left . . .
Tony just stepped in the room and says “Howdy” to you all!
So, that’s the update from Tennessee. We’re continuing to enjoy precious moments with Dad. And we’ll keep enjoying them for however long they last.
Thank you all for your warm thoughts and prayers.
aloha,
Susan
p.s. I also asked the other nice doctor on Monday if we should just bring Dad home on Thursday and then start hospice. He said that he thinks we should ride the Patricia Neal train for as long as we can (Dad’s able to participate) and then when Dad says he wants to go home, go home!!!
***Here I am with Dad just after he was awarded a medal for participating in the therapy sessions.
You think he looks unhappy?  Well, he was.
Just a few weeks before he’d won a match in a national tennis tournament, and now he’s being given a medal just for participating?
Fortunately, he was able to rally and change his outlook . . . though he remained saddened by all he has lost.
Tennessee turkey

Who Wants Ice-cream?

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date: Tues, Nov 18, 2008
subject: Mahalo Wonderful Friends!!!
Wow!
How can I thank you ALL for your wonderful words of support? How fortunate we all are to have each other in our lives.
Bevin’s note painted a picture, which I will continue to carry around with me, “Thanks for the update Susan! It’s like we’re right there with you holding your hand. Your report had it all. Thank you for letting us in on your dad’s health.”
I feel you all around me (holding my hand, giving warm hugs and great big smiles). And whenever the next difficult moment comes, I’ll look up and then turn around and “see” you all there with me. Mahalo.
Today Dad awoke in the most despondent mood I’ve seen since this all began on September 28th. We spoke on the phone and my sister Hannah called him too to encourage him. Later I walked into the therapy room to see him sitting in a wheelchair wearing his bright orange fleece top and Tabasco/red chilies pants batting a balloon over a net to other spinal chord injured patients. He was making jokes and making them all laugh; he was encouraging the lady directly across from him (there were 3 people on either side of the net) who was having an especially difficult time. He rejoiced with her when she was able to hit it several times in a row and then knock it over the net.
Later as he wheeled himself back to his room, he said, “You know, I’ve had a complete turn around since this morning . . . Can you show me where they keep the ice cream?” He then wheeled himself up to the fridge in the dining room, which is at the far end of the long hallway directly down from his room. We sat together and looked out over Knoxville and the bright orange fall leaves and ate our chocolate ice cream. It was a beautiful moment. Heck, it doesn’t get much better than that–sitting with my content father AND sharing chocolate ice cream.
Love to you all,
Susan
p.s. oh, and last week my cousin from NYC flew to Charlotte and drove in with his sister, their mom, his sister’s 2 year old and a 4.5 month old . . . and my other sister with her husband and 2 kids were here . . . the doctor had said NOW’s the time to visit while he feels well enough . . . and anything could happen any minute. It was so great having them all here. And Mom and Dad’s house somehow held us all. And Dad saw a real reason to be positive, etc. He’s become the patriarch of the family and surrogate grand pops to MANY! and so it goes . . .
Smokey Mountain Stream

Choices Arose from the Ashes

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date: Mon, Nov 17, 2008 at 9:16 PM

Dear Girlfriends (and cousin J.),
Mahalo for the nice card from the bookclub ladies to my Dad. He was very appreciative.
And mahalo for all your well wishes and prayers.
Here’s an update. This afternoon Dad was moved from Park West Hospital to Patricia Neal Rehab Center.This was quite an upset to the predictions of last week . . . Without going into all of the details, it’s been a roller coaster ride. Where could Dad go after leaving the hospital? First choice was the brand new VA place; they denied him and we were told that EVERY skilled care or long-term care place would deny him because he’s on PO chemotherapy (pill da kine). We were told we should bring him home. Positive-attitude-me looked at all the ways this could be possible . . . and we tried to wrap our heads around that (not too easy since Dad’s non-ambulatory, etc.). One day at breakfast there were NO options and by lunch we had possibly two. I wrote letters to senators, etc. about the VA–still to no avail but when my sister and I went over there to play the role of bad cop/good cop (long story) they pulled out a file a mile high on him. And why do they have that if they’re denying him . . . ? Anyway, we found a place, he was going there on Friday and then this thing came up (remember, this is the SHORT version). It’s all fine now, but he did have to go off the chemo and food for a few days. He’s now on soft food, chemo should start tomorrow. And in the meantime, he lost his space at that place (very close to my parents’ house).
But here’s the kicker. Since he was in a hospital, therapy was intermittent. My sister and I have been squeaky wheels, so guess what, he had therapy every morning after we squeaked. And get this, he walked 42 steps one day (with a walker and two PT nurses on either side and me in back with the wheel chair for when he got tired), 60 something the next day, 120 something the day after that! and then after a day off he walked 167 steps! So, the staff took notice and lo and behold Patricia Neal Rehab Center said today at 2:15 p.m. they’d take him on a trial basis (5 to 7 days to see if he can handle 3 hours a day of therapy). And I had to give them a decision before 3 because the other facility would only hold his bed till then. I called and left messages with the Mr. Incredibly Wonderful doctor’s phone message centers . . . thought it over, called my sister and thought it over with her . . . and decided, let’s go for it. I gave Dad the scoop, and the bottom line is that if he turned down this chance, a second one wouldn’t come his way. The rehab place wouldn’t take him from a nursing home . . . and if it doesn’t work and he can’t handle it, he can go to that facility (when they have a space, that’s the kicker, the one available Friday was lost, then magically one appeared Monday afternoon, so I’m just believing that another one will magically appear when it’s needed). And the long shot is that Dad can keep improving and maybe be able to come home at some point. We’ll see.
He does have stage 4 cancer (which simply means it’s spread to many areas including the pancreas). But my Dad’s not your average bear. Also, the steroids they’re giving him to keep the swelling in his spinal column down is masking the affects of the cancer and helping to boost his mood (per the doctor and remember how they—steroids—helped Fido 4 years ago?).
So, that’s the deal, pickle.
And in the middle of all this my Mom has gotten new kitchen cabinets, and appliances . . . I think the distraction is doing her good. So after all day at the hospital, we’ve been putting things in drawers. Tonight we were too pooped though to do so . . . so it’s to bed early.
And, it’s COLD!
And I know Tony’s home literally working his okole off . . . and he’s gotten a cold to boot; he’s working so hard so that he can leave Wed. night to join up with me.
Thanks for reading this very long missive and mostly MAHALO for all your prayers. My Dad keeps touching people everywhere he goes. The two physical therapists both were in tears the other day when he hit 126 steps. You should have seen all the people coming by to say bye to him at the hospital (the staff, nurses, etc.) and then to come back to Pat Neal and have people remember him is cool too.
We hope to be able to bring him home for a few hours next week on Thanksgiving . . . please send good thoughts that way too.
Oh, and today he gave his 66 year old bamboo fly fishing pole to the incredibly wonderful doctor . . . he was very moved by it . . . and today is my dad’s 65th anniversary of being enlisted as a lieutenant in the army . . . have I been gone for a year already? It sure feels like it.
Love and kisses and aloha,
Susan
Boy with pet calf 1920s Knoxville, Tennessee

The First Letter about Dad

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Sent: 11/6/08 @ 10:15 a.m.

Subject: howdy

Hi Girlfriends.

I’ll miss you all this week at bookclub (enjoying the book A., “What is the What”).

FYI, I just booked a flight to Tennessee and am leaving Sat. night.The docs now say that Dad has cancer in his pancreas (in addition to what they originally found in his spinal column . . . which was found because of the shingles).He’s been on radiation since the 1st, so it’s helping him be able to move from his bed to the wheelchair . . . and he even took a few spins around the nurses station in his chair (on his own).

His attitude is good, but I want to go back and help out (I was there 10/14-21 already).

So, I’m writing because I love knowing that my many wonderful girlfriends are holding my family in their hearts and prayers.Tony will be joining me in Tenn. on the 20th of November. Until then he has his hands full doing all our video da kine . . . . (we also have a few house guests who were momentarily homeless . . . they should be taking care of Rocket Girl until we return on the 11th of December).

aloha,

Susan

• • •

Also sent the following to my cousin in Brooklyn:

Right now he’s responding to the radiation. He’s got a good attitude. H.’s dealing with the hard red-tape of setting up another place for him after he leaves the hospital (probably on the 11th of Nov.).

WE’RE NOT LETTING DAD KNOW ABOUT THE RED TAPE. NO NEED TO STRESS HIM OUT AND CAUSE HIM TO FEEL GUILTY . . .

So, I’m writing to you just to keep you in the loop.Best to you and C.

P.S. Dad L O V E D his pet calf. Knoxville, Tennessee 1920s. The depression was ever present. Food was scarce. But for my Dad, this calf brought hope of milk . . . and love. ;-)

Lyon flower sculpture

A Year Ago

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When I look at my calendar notes from a year ago today, here’s what I see:

– S. French lesson

– mailed DVD to D. @ Grand Hyatt

– S. trimmed mock orange hedge, listened to Les Miz.

– T. finished poster for E., printed @ UH Kinko’s (M. agreed to delivery . . . )

– T. to Ycamp, windsurfed and got T’s camera

– T. rehearsal in Lihue, came home with idea for Sunday

– S. watched French movie with RG

It must have been a day off because there’s no “S. office work” or “shoot @ . . .”.And when I thumb ahead I see that there are no more entries like “S. French lesson” until late in the spring of the following year.And you can see that on 9/24/08 I did several things relating to French studies—the lesson, listening to the story of Les Miserable (en francais for kids) and watching a movie with Rocket Girl.For those of you who know me, yes, I did get to go to France four months later to study French, but I didn’t crack a book once between the 24th of September and then.Why?Our life was about to change though we didn’t know it at the time.

Looking at the calendar notes, I see that M. at Kinko’s agreed to deliver a poster. This was a big deal because Tony had been working hard on a surprise poster for a friend with cancer.He and his wife were in Honolulu where he was being treated with radiation.Tony had photographed the important people in E.’s life and made a fabulous poster—a collage of all these happy, smiling familiar faces.We wanted to bring some sunshine into his life, surprise him, and remind him that he wasn’t alone and that we were all thinking of him.Long story short, it was going to be too late to get the poster to him before they left Honolulu because of all kinds of boring, real-world things.So I called back.

“It’s really important that it gets delivered because . . .”“Okay,” she said, “Someone can simply drive it over to their hotel.”

Sigh.We were so glad to know that they were going to get it.We imagined their happy faces and felt glad to be able to do a little bitty something to make their lives better—for the moment.

Little did I know that this was the last week that my 87 year old Dad would ever play tennis.

An 87 year old man playing tennis, you ask? Yes, my Dad was an amazing athlete.He’d been playing tennis since he was a kid in Knoxville, Tennessee during the depression.He and some life-long friends made a court in the dirt.Little did they realize how much that one simple act would affect the rest of their lives. Earlier in September 2008 Dad had won a three hour match at a national tennis tournament. Yes, a 3 hour match!And he and mom had driven to the tournament in their 35’ motor home.

So, fast-forward to Sunday, September 28, 2008.Dad had trouble putting his shoes on for church that morning.

Refusing to be discouraged by his heavy feet, he met friends at the court the following day for their weekly match.The heaviness continued and by Friday the 3rd of October, he couldn’t walk.

Later, I wrote some letters to girlfriends about what was going on.