New Stoffs
Saturday October 25, 2003
Meet the new furry addition to the family! She is a four month old completely adorable kitty, cat-apulted into our lives by our pal Zeke. She just arrived late Thursday afternoon, and she hasn't told us her name yet, so stay tuned.
Upon meeting her, Laurie observed that she is an absolute blend of Sophie and Ernestine...her coloring is gorgeous - light grey tabby markings, plus some cream and brown and orange. Can you hear her purring? Can you feel the joyful swell of my heart?
Dr. Frank DaKine
Friday October 17, 2003
This is a little comedy routine which is an imaginary visit to a spooky island oncologist by a Mr. Jim Kauahikaua. It's an MP3 by Mike Helms. The MP3 is over 6MB so it may take up to 20 min to download if you are on a 56k modem. If you don't want to wait just go back
Mahalos
Friday April 11, 2003
~for room service in paradise meals, Asta, XT, Kim, Leslie and Jackie.
~for Jenda and her homemade squash soup as well as bird feeder hanging services
~for beautiful Big Island anthuriums from Bob K. and his wife
~for the "made it alive" gorgeous orchids from Fran and Jim
~for the most recent package of good Easter cheer, from Kathy C.
~for the silver Mexican bracelet from Julie Mc.
~for love and ongoing support from Lori B.
~for the chimes and sweetness from Kris and Dick
to Debbie, Mick and Bruce for cancer survivor counseling
to Judy F. for being an incredible colleague turned dear friend
to Kim M. and Leslie for more dinner deliveries
to Linda and Rick for undreamed of generosity despite the fact that our situation must be triggering their own grief
to Tom and Char for a flying bovine that brought a laugh out loud up from the depths
to Mama Bear for protea that keep on being beautiful
to Fran and Jim for orchids and care packages extraordinaire
to Dachs for weekly doses of Dachliness
to Ruthie and Sarah for hand made cards and pixie dust
to Jan for grass seed science project and aloha wear cards
to Kim T. for caregiver support
to Puppy Child for music to kill cancer by
to Carol and Mike for purple toenails and swimming in the blue, a year ago last week
Once we made the difficult decision to relocate to oahu ( the island of Jim's birth), our friends shifted into high gear to help us find a place to live in Honolulu. Judith Fox Goldstein, forever friend, sent emails to everyone in the western hemisphere and heard back from a very special man named Peter Mouginis-Mark.
Pete is a planetology professor at UH Manoa, has known Jim for many years, and they have occasionally worked together. We talked and Pete told me that he and his wife Ada are currently living in a condo that they wanted to sell so they can make renovations to their new empty home on Round Top Drive. In a gesture of incredible generosity, they offered their home to us for a period of time that will cover most of Jim's treatment. All we have to do is rent furniture and cover the utility bills.
Jim said that it was almost as devastating to think about leaving the Big Island as it was to receive the cancer diagnosis. But once we set foot in Pete and Ada's house, we both knew we had found a place that would be a genuinely healing place to stay. there is a palpable sense of peace and calm in this light-filled, airy home which sits on a peaceful hill on 70,000 year old round top ash and overlooks waikiki and the pacific blue just beyond the buildings. We will never be able to adequately thank Pete and Ada for this blessing.
And since we are here at the blessing portion of this ramble, please know that Jim and i both feel grateful to have each of you in our lives. Thank you for giving of yourselves so completely.
Thank you, thank you
~ for packing our stuff up and sending it to us
~ for walking, petting, feeding and surrogate parenting our "girls", Girlie, Gimel and Ernestine.
~ for the prayers you have sent out to us,
~ for noni juice and lettuce, and massages,
~ for the generous donations which go to helping us defer our expenses here - especially to the AAUW women, and to the group that funded our Fed Ex boxes,
~ for the books and videos and dvds,
~ for the shaving of the beard,
~ for the chocolate and cd's and photographs,
~ for the long hugs and understanding looks,
~ for the messages you leave, and the songs you sing to us on voicemail,
~ for celebrating with us when we feel renewed and hopeful, and even more for hanging in there when we are blue and cranky.
~ for the cards you spend your lunch hours buying and writing, for the stamps you put on the colored envelopes that arrive in our mailbox at the bottom of our driveway.
~ for the bamboo ridge babes of Hilo, so consistent in their writerly ways
~ for the flowers that come in baskets and bunches and vases, and brighten up the rooms
~ for the candles that burn bright with hope
~ for the balloons that buoy our spirits
~ for the non-sense games and toys - they make exquisite sense to us, and are healing tools.
~ for the large-as-life lava photos, and for the golden light that Brad pours in every time he writes.
~ for the Ernestine polaroids and lunchtime sagas
I walk down that 50 meter long vertical drop driveway each day. Those of you who have visited us - please tell the others that like my hero dave barry, i am not making this up. It is a daunting driveway. The climate zones differ from top to bottom. Quite possibly the time zones as well.
More often than not, I am rewarded at the bottom with a treasure in the mailbox. You have no idea how you carry me back up that hill. I fly back up with your cards and letters - and frequently i am humming "the wind beneath my wings" how sappy is that?
Before the sap runs too deep here, i'm gonna go. but i'll be back, to try again to express how much we love you. HVO/USGS/Volcano National Park People Jim's colleagues have been incredible. They are better than cross-your-heart bras in terms of being uplilfting and supportive. Long distances are made short by their outpouring of genuine friendship. We lava them!
Jeri's co-workers are great. In her absence, The East Hawaii Big Island staff is covering Jeri's full caseload of special education students in foster care. She knows how busy any given workday can be, and is grateful for the extra time that Sherry and Pauline are putting in, on top of their own heavy loads. Much love to Stan, Kathie, Steve and all the surrogate parents of EPIC.
~for Jenda and her homemade squash soup as well as bird feeder hanging services
~for beautiful Big Island anthuriums from Bob K. and his wife
~for the "made it alive" gorgeous orchids from Fran and Jim
~for the most recent package of good Easter cheer, from Kathy C.
~for the silver Mexican bracelet from Julie Mc.
~for love and ongoing support from Lori B.
~for the chimes and sweetness from Kris and Dick
to Debbie, Mick and Bruce for cancer survivor counseling
to Judy F. for being an incredible colleague turned dear friend
to Kim M. and Leslie for more dinner deliveries
to Linda and Rick for undreamed of generosity despite the fact that our situation must be triggering their own grief
to Tom and Char for a flying bovine that brought a laugh out loud up from the depths
to Mama Bear for protea that keep on being beautiful
to Fran and Jim for orchids and care packages extraordinaire
to Dachs for weekly doses of Dachliness
to Ruthie and Sarah for hand made cards and pixie dust
to Jan for grass seed science project and aloha wear cards
to Kim T. for caregiver support
to Puppy Child for music to kill cancer by
to Carol and Mike for purple toenails and swimming in the blue, a year ago last week
Once we made the difficult decision to relocate to oahu ( the island of Jim's birth), our friends shifted into high gear to help us find a place to live in Honolulu. Judith Fox Goldstein, forever friend, sent emails to everyone in the western hemisphere and heard back from a very special man named Peter Mouginis-Mark.
Pete is a planetology professor at UH Manoa, has known Jim for many years, and they have occasionally worked together. We talked and Pete told me that he and his wife Ada are currently living in a condo that they wanted to sell so they can make renovations to their new empty home on Round Top Drive. In a gesture of incredible generosity, they offered their home to us for a period of time that will cover most of Jim's treatment. All we have to do is rent furniture and cover the utility bills.
Jim said that it was almost as devastating to think about leaving the Big Island as it was to receive the cancer diagnosis. But once we set foot in Pete and Ada's house, we both knew we had found a place that would be a genuinely healing place to stay. there is a palpable sense of peace and calm in this light-filled, airy home which sits on a peaceful hill on 70,000 year old round top ash and overlooks waikiki and the pacific blue just beyond the buildings. We will never be able to adequately thank Pete and Ada for this blessing.
And since we are here at the blessing portion of this ramble, please know that Jim and i both feel grateful to have each of you in our lives. Thank you for giving of yourselves so completely.
Thank you, thank you
~ for packing our stuff up and sending it to us
~ for walking, petting, feeding and surrogate parenting our "girls", Girlie, Gimel and Ernestine.
~ for the prayers you have sent out to us,
~ for noni juice and lettuce, and massages,
~ for the generous donations which go to helping us defer our expenses here - especially to the AAUW women, and to the group that funded our Fed Ex boxes,
~ for the books and videos and dvds,
~ for the shaving of the beard,
~ for the chocolate and cd's and photographs,
~ for the long hugs and understanding looks,
~ for the messages you leave, and the songs you sing to us on voicemail,
~ for celebrating with us when we feel renewed and hopeful, and even more for hanging in there when we are blue and cranky.
~ for the cards you spend your lunch hours buying and writing, for the stamps you put on the colored envelopes that arrive in our mailbox at the bottom of our driveway.
~ for the bamboo ridge babes of Hilo, so consistent in their writerly ways
~ for the flowers that come in baskets and bunches and vases, and brighten up the rooms
~ for the candles that burn bright with hope
~ for the balloons that buoy our spirits
~ for the non-sense games and toys - they make exquisite sense to us, and are healing tools.
~ for the large-as-life lava photos, and for the golden light that Brad pours in every time he writes.
~ for the Ernestine polaroids and lunchtime sagas
I walk down that 50 meter long vertical drop driveway each day. Those of you who have visited us - please tell the others that like my hero dave barry, i am not making this up. It is a daunting driveway. The climate zones differ from top to bottom. Quite possibly the time zones as well.
More often than not, I am rewarded at the bottom with a treasure in the mailbox. You have no idea how you carry me back up that hill. I fly back up with your cards and letters - and frequently i am humming "the wind beneath my wings" how sappy is that?
Before the sap runs too deep here, i'm gonna go. but i'll be back, to try again to express how much we love you. HVO/USGS/Volcano National Park People Jim's colleagues have been incredible. They are better than cross-your-heart bras in terms of being uplilfting and supportive. Long distances are made short by their outpouring of genuine friendship. We lava them!
Jeri's co-workers are great. In her absence, The East Hawaii Big Island staff is covering Jeri's full caseload of special education students in foster care. She knows how busy any given workday can be, and is grateful for the extra time that Sherry and Pauline are putting in, on top of their own heavy loads. Much love to Stan, Kathie, Steve and all the surrogate parents of EPIC.
The Nurses
Monday March 31, 2003
Carol Lieban presides over a talented group of nurses on Tower Seven. Her adept ways come from her absolutely grounded personality and over 25 years of experience as an oncology nurse.The first time Jim had chemo, six weeks ago, she helped make everything about the experience go smoothly. Even when she wasn't our assigned nurse, Carol has been there to talk with and to intervene when the going gets tough. She is direct, articulate and compassionate, and a patient advocate to the bone . Photo to follow soon.
The other nurses of Tower Seven who have helped us immesurably are June-in-Maroon, Lydia, Willy, Katie the Floater, Sandee, and Noe.
Tower Seven is not just a place that you stay when you are getting cancer treatment, but a place that stays with you. We have at least three more rounds of heavy duty chemo in the next few months, and we are comforted to know that these amazing nurses will be there to help get us through. Although the oncologists are the authors of Jim's treatment plan, and we love and trust them, they are but one part of the team that is helping jim to recovery.
The radiation team and the nurses at Queen's Medical Center are amazing. (We will have some photos up on the website soon.) In particular, our dear friend and nurse Scott Gilbert has been a in every sense you can imagine, the human embodiment of an angel. He appeared on the first day we got to Queen's - he was sent to put in a routine i.v. before Jim's surgery to insert the stomach feeding tube.
We had known Scott and his wife Lori from when they lived on the Big Island years ago. Scott is always a welcome sight, but on February 6th, Jim and i were overjoyed to see him again. Scott is an expert i.v. nurse. A guy who is good with a needle is exactly who you want walking in the room on the first day of a long journey with cancer treatment. But Scott is not just proficient in his work - he is a magnificent human being. There can be a lot of gloom associated with cancer - the "c" word - as people used to say. But when Scott walks in, all gloom vanishes. The light seems brighter, and it feels like there is more oxygen and good stuff to breathe in the air. If we could bottle the essence of Scott, many drug companies would be filing for bankruptcy. Scott is all the good "C" words - caring, conerned, compassionate, cute, courageous, conversationally gifted in that he listens and speaks with equal energy. Scott brings cancer literature, statlocks, extra gauze, better tape which is less irritating to Jim's skin, a whole goodie bag of medical stuff that makes life easier - but most of all he brings himself and his calm, welcome energy whenever he visits, which is often. We are so grateful that he is here.
The other nurses of Tower Seven who have helped us immesurably are June-in-Maroon, Lydia, Willy, Katie the Floater, Sandee, and Noe.
Tower Seven is not just a place that you stay when you are getting cancer treatment, but a place that stays with you. We have at least three more rounds of heavy duty chemo in the next few months, and we are comforted to know that these amazing nurses will be there to help get us through. Although the oncologists are the authors of Jim's treatment plan, and we love and trust them, they are but one part of the team that is helping jim to recovery.
The radiation team and the nurses at Queen's Medical Center are amazing. (We will have some photos up on the website soon.) In particular, our dear friend and nurse Scott Gilbert has been a in every sense you can imagine, the human embodiment of an angel. He appeared on the first day we got to Queen's - he was sent to put in a routine i.v. before Jim's surgery to insert the stomach feeding tube.
We had known Scott and his wife Lori from when they lived on the Big Island years ago. Scott is always a welcome sight, but on February 6th, Jim and i were overjoyed to see him again. Scott is an expert i.v. nurse. A guy who is good with a needle is exactly who you want walking in the room on the first day of a long journey with cancer treatment. But Scott is not just proficient in his work - he is a magnificent human being. There can be a lot of gloom associated with cancer - the "c" word - as people used to say. But when Scott walks in, all gloom vanishes. The light seems brighter, and it feels like there is more oxygen and good stuff to breathe in the air. If we could bottle the essence of Scott, many drug companies would be filing for bankruptcy. Scott is all the good "C" words - caring, conerned, compassionate, cute, courageous, conversationally gifted in that he listens and speaks with equal energy. Scott brings cancer literature, statlocks, extra gauze, better tape which is less irritating to Jim's skin, a whole goodie bag of medical stuff that makes life easier - but most of all he brings himself and his calm, welcome energy whenever he visits, which is often. We are so grateful that he is here.
The Doctors
Monday March 31, 2003
Dr. Clayton Chong came to see us in the hospital on Thursday night after 6:30 pm. He had begun his day making hospital rounds around 7am, seeing patients in two offices ( Queens and St. Francis hospitals) and still had a meeting to go to after his visit with us. This Clayton guy is so much more than a ton of clay. He takes excellent care of Jim, gives big bear hugs. He even tells us his dreams of an oncology center, and stories about his life. I would hate to add even a minute more of work to his day, but if any of you ever are in need of a medical oncologist...run, do not walk, to his door.
Dr. Lederer was on vacation giving a talk in Canada this week. We missed him and hope he gets some accolades and rest. He deserves both.
We met with James Conant, our dosimetrist - the guy who helps Dr. Lederer figure out the doses of radiation. He is a big man with a big heart - he spent time with us to give an understanding of how complex Jim's radiation plan has been and will be in the next several weeks. We know that both he and Dr. Lederer have worked late nights and weekends to dial up the right stuff to zap the tumors into oblivion. Drs. Clayton Chong and John Lederer are working hard to design and deliver the very best treatment program to cure Jim. They are both highly respected experts in their field and champions in our eyes. I'll try to get photos of them soon. We see them at least once a week to fine-tune this cancer-beating machine.
I was going to tell you that Dr. Chong is Hawaiian-Chinese, and Dr. Lederer is Haole, but it is starting to sound like intros for a Miss Aloha Hawaii contest...
Dr. Chong is the medical oncologist - he drives the chemotherapy, and we can tell he drives a hard bargain with cancer. He comes to see Jim in the hospital frequently during the chemotherapy... and offers us encouragement, new drugs, his time and his akamai ways.
Dr. Lederer is the radiation oncologist and he dials up a mean program of zapping rays. An interesting thing about Dr. Lederer is that he has interns. (who we have dubbed "the ducklings" because they follow him around exactly like baby ducks to their mother) The ducklings have also been very helpful to us.
We love them both. They are honest and direct, and although they are incredibly busy, they always make themselves available when we have questions, which is often.
I can't remember if i wrote this in an earlier website entry, but Jim observed that both of our doctors have the ability to listen and respond to our concerns as if it is the first time they are hearing them...as opposed to the 87th time that day.
We have great confidence in their skills - human and medical.
Dr. Lederer was on vacation giving a talk in Canada this week. We missed him and hope he gets some accolades and rest. He deserves both.
We met with James Conant, our dosimetrist - the guy who helps Dr. Lederer figure out the doses of radiation. He is a big man with a big heart - he spent time with us to give an understanding of how complex Jim's radiation plan has been and will be in the next several weeks. We know that both he and Dr. Lederer have worked late nights and weekends to dial up the right stuff to zap the tumors into oblivion. Drs. Clayton Chong and John Lederer are working hard to design and deliver the very best treatment program to cure Jim. They are both highly respected experts in their field and champions in our eyes. I'll try to get photos of them soon. We see them at least once a week to fine-tune this cancer-beating machine.
I was going to tell you that Dr. Chong is Hawaiian-Chinese, and Dr. Lederer is Haole, but it is starting to sound like intros for a Miss Aloha Hawaii contest...
Dr. Chong is the medical oncologist - he drives the chemotherapy, and we can tell he drives a hard bargain with cancer. He comes to see Jim in the hospital frequently during the chemotherapy... and offers us encouragement, new drugs, his time and his akamai ways.
Dr. Lederer is the radiation oncologist and he dials up a mean program of zapping rays. An interesting thing about Dr. Lederer is that he has interns. (who we have dubbed "the ducklings" because they follow him around exactly like baby ducks to their mother) The ducklings have also been very helpful to us.
We love them both. They are honest and direct, and although they are incredibly busy, they always make themselves available when we have questions, which is often.
I can't remember if i wrote this in an earlier website entry, but Jim observed that both of our doctors have the ability to listen and respond to our concerns as if it is the first time they are hearing them...as opposed to the 87th time that day.
We have great confidence in their skills - human and medical.
Non-Cancer Stoffs
Sunday March 23, 2003
Our dogsitter Auntie Bev, is taking a break from daily duties, but she directed us to a great woman named Layne Novak, who we have hired to care for Girlie and Gimel while we are gone. Layne has a professional pet sitting service and you can contact her at watchyourtail@yahoo.com. We are happy to have her on the support team. The girls already jump to greet her when they see her car appear in the driveway!
Bev will still see the girls on Saturdays and Jill and Max Savage will be there for them on Sundays. Jill is one of our jockette hero pals, and takes G&G on long walks in the cane up in the cane fields, swims in the Wailuku river, and to their doggie delight, weekly car rides!
Many of you know that we have a bird feeder here at round top. Jenda got it up for us using medical tubing from Jim's feeding bags... i realize that sounds deviant, but just get your minds out of the sewer for one minute! I love to feed things, people, and it has been comforting to know that if you hang it, they will come. (Feed the birds, tuppence a bag...)
We've enjoyed watching the fine feathered population dine at the cedar gazebo, and having them here every day brought to mind an old favorite Emily Dickenson poem - just right for our circumstances...
Hope is the thing with feathers
that perches in the soul.
And sings the tune without the words
And never stops at all.
Anybody out there need to be rubbed the right way? This is an unabashed plug for our friend and massage therapist extraordinaire Kris Short. You can reach her in her home studio at Kilikina Massage - 961-5767. If you live on the Big Island and want to experience therapeutic horizontal heaven, give her a call.
And speaking of heaven, Dylan Morris is starring in the Hilo High Performing Arts Learning Center Production of Jekyll and Hyde. And I do mean starring. This boy can act, move and oy, such a singing voice!
His performance was a bright celestial object streaking across the sky. Listening to his voice - like velvet as Jekyll, like gravel as Hyde - gave me chicken skin. I am proud to be one of his former directors. Imua, kid. Shine on.
My much-loved and only brother Mikey is celebrating his 45th birthday today in Denver. Wish that we could be together...and we hope he gets whatever he wishes for when he blows out his birthday candles. He believes the NCAA final four has been scheduled on his birthday weekend as a present directly handed down from above. I believe it too. May my brother have all the love and joy and roundball that life can offer.
We were welcomed home from the hospital today (Saturday, 4/5 ) by an amazing present that came from Volcano. Janet, Toni, Norrie and Jay fashioned the most beautiful quilt we have ever seen. Each of the fabrics is an art piece, and best of all, there are dozens of good wishes printed on many of the segments from HAVO, HVO, VAC, Kileaua Chorus, and other dear Volcano friends.
We thank all of you for the work of your hands and hearts. We will wrap ourselves in this quilt and be comforted by your aloha.
We like to drive on roads other than the H-1 freeway whenever possible. So far my favorite route to the hospital is Nehoa over to Keeaumoku and on to Beretania for two reasons. 1) there is a cool little roundabout thing, which for some reason makes me feel like I'm in Europe, (I've never been there) and, 2) we get to pass by the 8 FAT FAT 8 bar and grille on Beretania. We've never eaten there, but brother Dave tells us that Frank Delima says the food is ono.
I just like the name and the way it looks so happy, painted boldly on the side of the building. 8 FAT FAT 8!
Several friends have sent us the following poem. We share it with you and hope you like it as much as we do.
Crying by Galway Kinnell from Three Books (Houghton Mifflin)
Crying only a little bit
is no use. You must cry
until your pillow is soaked;
Then you can get up and laugh.
Then you can jump in the shower
and splash-splash-splash!
Then you can throw open your window
and, "Ha, ha! "Ha, ha!"
And if people say, "Hey, what's going on there?"
"Ha ha!" sing back,
"Happiness was hiding in the last tear!
Mazel tov to our friend Avi Soifer, who has accepted the postion - (will assume the position?) of Dean of the law school here in Honolulu. Avi and Marlene ( if a rabbi's wife is the rebbetzen, does that make Marlene the deanitzen?) will be calling Hawaii home before summer's end!
Friday night 3/21 offered us a harmonious and welcome break from television war coverage. As the sun went down over Punchbowl, na leo nahenahe - the sweet voices of Kamehameha students rang out in the air. Live from the Blaisdell arena, and televised for our enjoyment, the 81st annual song contest was a perfect gift at the end of this long week.
Jim has memories of being really nervous during his song contest years. Dave is onstage tonight in his regular gig with Frank DeLima, so I didn't get the chance to ask him about ghosts of song contests past.
It's still going on as i write this, so we don't know which class will win. So far, the junior boys and the senior girls sound like pretty strong frontrunners...Imua Kamehameha!
In the radiation center waiting room there is a giant television that is always tuned to Fox news. In our opinion, this is an appalling choice of waiting room programming. We think they could have slack key guitar music playing or something equally as soothing, but so far, we don't get to make those decisions. (give me time...) It is rude to be constantly bombarding cancer patients with grim news. But last week, we walked in on the tail end of a story that was actually wonderful, and not about violence and war.
If we weren't hallucinating, we believe it was a report that Stephen Sondheim intends to adapt the movie Groundhog Day into a stage musical for Broadway. Like the bookmark says, there are some things that cancer cannot do, and diminishing our pure unadulterated glee at hearing this news is one of those things. Can anybody confirm this? And if it is true ---oh joy ---- we have planned our first post-cancer trip. Save us two seats on the aisle...
We have been learning to appreciate the beauty of O`ahu. There are different birds here than there are in Hilo, and though none are native, they still give lovely morning concerts.
The air is decidedly non-voggy, and the views from Round Top are breathtaking - or breathgiving.
The Ko`olau mountains are tall, green and sentinel-like.
As Stephen Stills might say, "love the island you're with..."
Dear Kathy O. sent a section of the San Diego Union Tribune dated Feb. 26th. We were delighted to see one of Jim's credited photos. The paper must have pulled it off the USGS website. The skylight in the picture is called "cookie monster."
Our cardinal strengths are serving us well. For those of you who have been worried about me holding up, please believe that I am nothing if not resilient. I have felt the rubber in my soul flexing and bouncing again.
Jim is gathering data like the world-class scientist he is - quietly and reflectively taking in stuff - reading Lance Armstrong and other books that friends have sent.
We've got great books to dip into - kitchen table wisdom, full catastrophe living, wherever you go there you are, love medicine and miracles, lots of cancer literature, and dave barry's column every sunday.
Grammy awards night when we sat on the couch together and watched and listened as James Taylor and Yo Yo Ma played their chicken skin duet.
Jim's sense of humor is alive and well and..."surviving" last night he said he is going to name his pink throw up pail "Wilson."
Bev will still see the girls on Saturdays and Jill and Max Savage will be there for them on Sundays. Jill is one of our jockette hero pals, and takes G&G on long walks in the cane up in the cane fields, swims in the Wailuku river, and to their doggie delight, weekly car rides!
Many of you know that we have a bird feeder here at round top. Jenda got it up for us using medical tubing from Jim's feeding bags... i realize that sounds deviant, but just get your minds out of the sewer for one minute! I love to feed things, people, and it has been comforting to know that if you hang it, they will come. (Feed the birds, tuppence a bag...)
We've enjoyed watching the fine feathered population dine at the cedar gazebo, and having them here every day brought to mind an old favorite Emily Dickenson poem - just right for our circumstances...
Hope is the thing with feathers
that perches in the soul.
And sings the tune without the words
And never stops at all.
Anybody out there need to be rubbed the right way? This is an unabashed plug for our friend and massage therapist extraordinaire Kris Short. You can reach her in her home studio at Kilikina Massage - 961-5767. If you live on the Big Island and want to experience therapeutic horizontal heaven, give her a call.
And speaking of heaven, Dylan Morris is starring in the Hilo High Performing Arts Learning Center Production of Jekyll and Hyde. And I do mean starring. This boy can act, move and oy, such a singing voice!
His performance was a bright celestial object streaking across the sky. Listening to his voice - like velvet as Jekyll, like gravel as Hyde - gave me chicken skin. I am proud to be one of his former directors. Imua, kid. Shine on.
My much-loved and only brother Mikey is celebrating his 45th birthday today in Denver. Wish that we could be together...and we hope he gets whatever he wishes for when he blows out his birthday candles. He believes the NCAA final four has been scheduled on his birthday weekend as a present directly handed down from above. I believe it too. May my brother have all the love and joy and roundball that life can offer.
We were welcomed home from the hospital today (Saturday, 4/5 ) by an amazing present that came from Volcano. Janet, Toni, Norrie and Jay fashioned the most beautiful quilt we have ever seen. Each of the fabrics is an art piece, and best of all, there are dozens of good wishes printed on many of the segments from HAVO, HVO, VAC, Kileaua Chorus, and other dear Volcano friends.
We thank all of you for the work of your hands and hearts. We will wrap ourselves in this quilt and be comforted by your aloha.
We like to drive on roads other than the H-1 freeway whenever possible. So far my favorite route to the hospital is Nehoa over to Keeaumoku and on to Beretania for two reasons. 1) there is a cool little roundabout thing, which for some reason makes me feel like I'm in Europe, (I've never been there) and, 2) we get to pass by the 8 FAT FAT 8 bar and grille on Beretania. We've never eaten there, but brother Dave tells us that Frank Delima says the food is ono.
I just like the name and the way it looks so happy, painted boldly on the side of the building. 8 FAT FAT 8!
Several friends have sent us the following poem. We share it with you and hope you like it as much as we do.
Crying by Galway Kinnell from Three Books (Houghton Mifflin)
Crying only a little bit
is no use. You must cry
until your pillow is soaked;
Then you can get up and laugh.
Then you can jump in the shower
and splash-splash-splash!
Then you can throw open your window
and, "Ha, ha! "Ha, ha!"
And if people say, "Hey, what's going on there?"
"Ha ha!" sing back,
"Happiness was hiding in the last tear!
Mazel tov to our friend Avi Soifer, who has accepted the postion - (will assume the position?) of Dean of the law school here in Honolulu. Avi and Marlene ( if a rabbi's wife is the rebbetzen, does that make Marlene the deanitzen?) will be calling Hawaii home before summer's end!
Friday night 3/21 offered us a harmonious and welcome break from television war coverage. As the sun went down over Punchbowl, na leo nahenahe - the sweet voices of Kamehameha students rang out in the air. Live from the Blaisdell arena, and televised for our enjoyment, the 81st annual song contest was a perfect gift at the end of this long week.
Jim has memories of being really nervous during his song contest years. Dave is onstage tonight in his regular gig with Frank DeLima, so I didn't get the chance to ask him about ghosts of song contests past.
It's still going on as i write this, so we don't know which class will win. So far, the junior boys and the senior girls sound like pretty strong frontrunners...Imua Kamehameha!
In the radiation center waiting room there is a giant television that is always tuned to Fox news. In our opinion, this is an appalling choice of waiting room programming. We think they could have slack key guitar music playing or something equally as soothing, but so far, we don't get to make those decisions. (give me time...) It is rude to be constantly bombarding cancer patients with grim news. But last week, we walked in on the tail end of a story that was actually wonderful, and not about violence and war.
If we weren't hallucinating, we believe it was a report that Stephen Sondheim intends to adapt the movie Groundhog Day into a stage musical for Broadway. Like the bookmark says, there are some things that cancer cannot do, and diminishing our pure unadulterated glee at hearing this news is one of those things. Can anybody confirm this? And if it is true ---oh joy ---- we have planned our first post-cancer trip. Save us two seats on the aisle...
We have been learning to appreciate the beauty of O`ahu. There are different birds here than there are in Hilo, and though none are native, they still give lovely morning concerts.
The air is decidedly non-voggy, and the views from Round Top are breathtaking - or breathgiving.
The Ko`olau mountains are tall, green and sentinel-like.
As Stephen Stills might say, "love the island you're with..."
Dear Kathy O. sent a section of the San Diego Union Tribune dated Feb. 26th. We were delighted to see one of Jim's credited photos. The paper must have pulled it off the USGS website. The skylight in the picture is called "cookie monster."
Our cardinal strengths are serving us well. For those of you who have been worried about me holding up, please believe that I am nothing if not resilient. I have felt the rubber in my soul flexing and bouncing again.
Jim is gathering data like the world-class scientist he is - quietly and reflectively taking in stuff - reading Lance Armstrong and other books that friends have sent.
We've got great books to dip into - kitchen table wisdom, full catastrophe living, wherever you go there you are, love medicine and miracles, lots of cancer literature, and dave barry's column every sunday.
Grammy awards night when we sat on the couch together and watched and listened as James Taylor and Yo Yo Ma played their chicken skin duet.
Jim's sense of humor is alive and well and..."surviving" last night he said he is going to name his pink throw up pail "Wilson."
Kamehameha Alumni
Friday March 07, 2003
As many of you know, Jim graduated from Kamehameha Schools, from the oh-so-fine class of 69. He told me that he has the distinction of graduating with the highest number of demerits possible. I believe there is a Jim Kauahikaua indentation around the parade grounds where he used to march off those demerits.
His classmates have rallied in a big way. Their support and prayers have been amazing. From Hilo to Hanalei and from every corner of the mainland, we have heard from that great, energetic Kamehameha group.
Jim has been singing bass with the alumni chorus in Hilo (Na Leo Mele O Kamehameha No Hilo) for the past several years.As the wife of a grad, I was invited to join, and took my seat in the alto section two years ago. We both love being part of that merry harmonious group, and miss our tender, musical and good fun ohana. They keep our spirits up with all their gifts - from love and prayers in cards and letters, to the live CD that Darlene and Keala sent - recorded live during a January 16th concert at the UHH Hilo theater auditorium.
Roy Horner has been the go-to guy on Molokai - the one who has rallied the call and initiated an email list to contact the 69ers. Your contacts give us hope, and peace and great memories.
His classmates have rallied in a big way. Their support and prayers have been amazing. From Hilo to Hanalei and from every corner of the mainland, we have heard from that great, energetic Kamehameha group.
Jim has been singing bass with the alumni chorus in Hilo (Na Leo Mele O Kamehameha No Hilo) for the past several years.As the wife of a grad, I was invited to join, and took my seat in the alto section two years ago. We both love being part of that merry harmonious group, and miss our tender, musical and good fun ohana. They keep our spirits up with all their gifts - from love and prayers in cards and letters, to the live CD that Darlene and Keala sent - recorded live during a January 16th concert at the UHH Hilo theater auditorium.
Roy Horner has been the go-to guy on Molokai - the one who has rallied the call and initiated an email list to contact the 69ers. Your contacts give us hope, and peace and great memories.
Keeping It Up
Friday March 07, 2003
Here are the words printed on a bookmark. The radiation team gave it to us on the first day of treatment:
Cancer is so limited...
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot conquer the spirit.
Cancer is so limited...
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot conquer the spirit.
Jeri’s Family
Tuesday March 04, 2003
Jeri's family in Denver and on the East Coast continually provide inspiration, humor and love. Her mom even sends Jim letters of encouragement direct from Elvis. She is the only person on the planet who knows wherehe is...somewhere out there, Elvis is alive and thinHVO/USGS/Volcano National Park People Jim's colleagues have been incredible. They are better than cross-your-heart bras in terms of being uplilfting and supportive. Long distances are made short by their outpouring of genuine friendship. We lava them!
Jeri's co-workers are great. In her absence, The East Hawaii Big Island staff is covering Jeri's full caseload of special education students in foster care. She knows how busy any given workday can be, and is grateful for the extra time that Sherry and Pauline are putting in, on top of their own heavy loads. Much love to Stan, Kathie, Steve and all the surrogate parents of EPIC.
Jeri's co-workers are great. In her absence, The East Hawaii Big Island staff is covering Jeri's full caseload of special education students in foster care. She knows how busy any given workday can be, and is grateful for the extra time that Sherry and Pauline are putting in, on top of their own heavy loads. Much love to Stan, Kathie, Steve and all the surrogate parents of EPIC.
Jim’s Booster Club
Tuesday March 04, 2003
Every day it gets more difficult to swallow due to throat burn from radiation, and feeling junker than junk from the chemo. The doctors have ordered Jim to ingest - either orally or via the stomach tube - 5 cans of Boost-Plus daily, in order to maintain healthy body weight. There are 360 calories and lots of vitamins and minerals in each can. He's also trying soy mixtures sent by Marilyn in Colorado and Peter in Los Angeles.
No Fire Rock, Pale Ale or Guinness Stout after a hard day of chemo and radiation. The new regime makes Boost-Plus the standard cocktail. It's the Pre-hana, Hana, and Pau Hana drink of choice here on Round Top Drive
No Fire Rock, Pale Ale or Guinness Stout after a hard day of chemo and radiation. The new regime makes Boost-Plus the standard cocktail. It's the Pre-hana, Hana, and Pau Hana drink of choice here on Round Top Drive
The Road To Discovery
Tuesday March 04, 2003
For those who like their stories in chronological order, here is a look back at the road that brought us to treatment in Honolulu:
September 14th, 2002:
Jim started having double vision.
He saw our family doctor, Lynda Dolan. She referred him first to an eye doctor, and then when nothing showed up there, to a neurologist.
October 4th, 2002:
MRI and blood tests -- all of which, according to the Hilo people who are interpreting them, come back normal - no disease, no tumors, zip, nada. Jim is treated for migraine with some medication.
January 7th, 2003:
We go to Honolulu for a second opinion appointment with neuro-opthalmologist (one of the heroes in this tale) Dr. Scott Kortvelesy. He reviews the MRI from October, confers with a colleague, and concludes that there is a mass in the nasopharynx and on the brain. He encourages a biopsy as soon as possible
January 16th, 2003:
Dr. Lovina Sabnani performs biopsy in Hilo Hospital.
January 23rd, 2003:
Dr. Lovina calls us into her office to share results of biopsy.
Jim has cancer. The tumors are called nasopharyngeal carcinoma.
February 6th, 2003:
We learned of two experts in the field of nasopharyngeal cancer in Honolulu. Our friends Sheryll Mylenek and Kim Tsukuzaki were incredibly helpful, and went to great lengths to get us appointments with Clayton Chong and John Lederer, both practicing at Queen's. (location, location, location!)
After consulting with doctors in Hilo and Honolulu, we decided to begin treatment with the dynamic duo of Dr. Clayton Chong, medical oncologist, and Dr. John Lederer, radiation oncologist.
Jim is admitted to Queen's hospital for two things: 1) to make a webbed mask that will assist in the precise delivery of radiation, and 2)a surgical procedure to insert a stomach feeding tube. The tube will be necessary in the next few weeks as side effects from the proposed program of simultaneous chemo and radiation treatments will make it difficult to impossible for him to swallow.
February 11th, 2003:
Jim begins chemo and radiation after five days of recuperation while staying in Kailua with his brother Dave. Radiation treatments will be administered daily, and chemo will be given once every three weeks. The chemo requires Jim to say overnight in the hospital and receive nutrition and hydration intraveneously.
September 14th, 2002:
Jim started having double vision.
He saw our family doctor, Lynda Dolan. She referred him first to an eye doctor, and then when nothing showed up there, to a neurologist.
October 4th, 2002:
MRI and blood tests -- all of which, according to the Hilo people who are interpreting them, come back normal - no disease, no tumors, zip, nada. Jim is treated for migraine with some medication.
January 7th, 2003:
We go to Honolulu for a second opinion appointment with neuro-opthalmologist (one of the heroes in this tale) Dr. Scott Kortvelesy. He reviews the MRI from October, confers with a colleague, and concludes that there is a mass in the nasopharynx and on the brain. He encourages a biopsy as soon as possible
January 16th, 2003:
Dr. Lovina Sabnani performs biopsy in Hilo Hospital.
January 23rd, 2003:
Dr. Lovina calls us into her office to share results of biopsy.
Jim has cancer. The tumors are called nasopharyngeal carcinoma.
February 6th, 2003:
We learned of two experts in the field of nasopharyngeal cancer in Honolulu. Our friends Sheryll Mylenek and Kim Tsukuzaki were incredibly helpful, and went to great lengths to get us appointments with Clayton Chong and John Lederer, both practicing at Queen's. (location, location, location!)
After consulting with doctors in Hilo and Honolulu, we decided to begin treatment with the dynamic duo of Dr. Clayton Chong, medical oncologist, and Dr. John Lederer, radiation oncologist.
Jim is admitted to Queen's hospital for two things: 1) to make a webbed mask that will assist in the precise delivery of radiation, and 2)a surgical procedure to insert a stomach feeding tube. The tube will be necessary in the next few weeks as side effects from the proposed program of simultaneous chemo and radiation treatments will make it difficult to impossible for him to swallow.
February 11th, 2003:
Jim begins chemo and radiation after five days of recuperation while staying in Kailua with his brother Dave. Radiation treatments will be administered daily, and chemo will be given once every three weeks. The chemo requires Jim to say overnight in the hospital and receive nutrition and hydration intraveneously.