Thursday, December 27, 2007

Memorial/Celebration of Life - May 17, 2008

Hi all, Caroline's memorial has been set for Saturday evening, May 17, 2008, 6:00 pm, at the Ouray Community Center.

If you're able, we would love for you to come cry, laugh, tell Caroline stories, and celebrate Caroline's life with us. While I'm sure there will be some tears, Caroline fully intended that we gather to celebrate her time with us and have a good time while doing so.

Following is the website for the Ouray Chamber of Commerce. It will provide you with some information about Ouray and there's a link at the top titled "Lodging". The motels I'm familiar with and can recommend are:

Box Canyon Lodge
The Best Western
The Comfort Inn (which accepts pets)
The River's Edge
The Victorian Inn

There are also several Bed & Breakfast facilities but I haven't stayed at any of those.

http://www.ouraycolorado.com/


I spoke with Robert about driving from the Dallas area. He said it would probably be best to drive:

Dallas to Albuquerque
Albuquerque to Pueblo, Colorado (Interstate 25)
Pueblo through Gunnison to Montrose, Colorado
Montrose south to Ouray

Let me know if you need specifics.

You could drive from Albuquerque to Durango, Colorado, but you'd have to go over Red Mountain pass --- it's definitely NOT for the weak of heart. You could go to Cortez and come over via Telluride. (The same for the New Mexico folks as well if the roads north of Durango are bad.) If you would like to come and would like to car pool, let me know and I'll try to connect people.

Please let me know if you have any questions or if I can get any information for you.

We're all doing well. Ian has been in Ouray with Robert since Sunday which has been great for both of them. As always, they opened the Buckskin for several hours Christmas day. Ian's due to depart tomorrow but I heard on the news this evening that the Denver airport has cancelled a ton of flights due to weather. Here in Prescott it's just cold (well, cold for us desert rats).

We miss Caroline terribly - I think of calling her all the time. I'm old enough to know it takes time - it just doesn't make my heart hurt any less. Thank you for the cards, emails, phone calls, love, and sympathy. I just love hearing from Caroline's friends. We hope to see you in May - if you can make it there safely.

Love to all,

Caroline's Family - Robert, Ian, Diane, Al and Suzie

Suzie West
suziew@cableone.net
Home: 928.776.0202

Sunday, December 23, 2007

Correction to site for Caroline's video

Sorry, folks! The correct link is:

http://www.cholangiocarcinoma.org/video/caroline/

Who knows what you got at the other link?!?!?!

Suzie

Caroline's Video: In Case I Die

Rick has posted Caroline's video to:

http://www.youtube.com/watch?v=szLmAPW39uE&feature=user

Thank you, Rick!

This video was made by the Ouray High School Film Class - specifically Kelsey Winfrey and Zach Ficco, as well as their teacher, Nancy Nixon.

Zach and Kelsey apparently shot about 5 hours of film. The video, In Case I Die, has been edited to 17 minutes.

Those of you who come to this CC site are dealing with a very important fact of life: facing your own death or that of someone you love. I think those of you who visit this site and are familiar with Caroline's blogs will appreciate this film - its humor and honesty.

I've decided God needed someone who thinks outside-the-box. I'm sure Caroline is shaking things up a bit in Heaven.

Love to you all,
Suzie

Sunday, December 16, 2007

My Sister - Sweet Caroline





Caroline loved the whole CC Family and your support meant the world to her. Following is a copy of an email I sent today that I thought I would share with you. I want you to know how much your blogs and posts also meant to me, Caroline's sister. You provided information, hope, comfort, and support. I also shared the heartbreak of families and friends who lost loved ones. We thank you from our hearts for all you gave to, and shared with, Caroline.


My dear family and friends,

Caroline lost her incredible battle with cholangiocarcinoma at 9:09 am, Friday, December 7, 2007, in Montrose Memorial Hospital. Diane and I, as well as her husband, Robert, and her dear friend and health-care nurse, Colleen Hollenbeck of Ouray, were all with her when she slipped away.

Robert, Diane and I truly believe that if Caroline had to die now, she departed in just about the best way possible: Wednesday she ate crab, lobster and shrimp; she bowled with her beloved bowling team Wednesday night (and even increased their score!); Thursday morning she could not be wakened; Friday morning she died. We are incredibly thankful Caroline did not linger for days/weeks/months - Caroline would have hated that.

WARNING: This is going to be one of my long emails which will be cathartic for me and will share information some of you will want - others will not, and I understand. If you want, just skip to the part below the asterisks (*******) near the end of this email.



Robert called me Thursday, December 6, and told me he was following an ambulance to the Montrose Memorial Hospital. After not being able to wake Caroline Thursday morning, he called Colleen. Colleen took Caroline's blood pressure, which was extremely low, and after checking with St. Mary's Oncology Center in Grand Junction (where Caroline was being treated by Dr. Bergen) they called the EMTs in Ouray. They stopped the ambulance three times on the way to Montrose trying to get a line in Caroline but her blood pressure was so low they were unable to insert a needle in a vein. Tests at Montrose Memorial revealed that Caroline was suffering from various infections in her bladder and bile duct, her kidneys were failing, her liver was gone, and her blood pressure was close to nonexistent. The damage to her body was irreversible. If they had been able to stabilize her, they would have flown her to Denver to have the stint that was placed in her bile duct early November cleaned out. Blood tests taken earlier that week revealed that the stint was blocked and Robert had scheduled an appointment to take Caroline to Denver on December 19 to have the stint cleaned or replaced. Robert called me several times with updates and Diane and I decided to head to Ouray.

Oh emergencies! The oil in my 4-Runner had to be changed (as storms were entering Colorado, we needed to take a 4-wheel drive) so Al took the car to have the oil changed, Diane had been in the process of passing a kidney stone and had decided not to go until she passed the stone. Robert called again saying the doctor wasn't sure Caroline would make it through the night. Diane repacked her things, Al returned with the car, and Diane and I departed Prescott about 8:40 pm Thursday night. I hit a deer just north of Flagstaff. I found it beside the road and when I approached it with a flashlight it stood and ran off using all four legs. I remember being panic stricken as it ran off that it would be using only three legs - I was so thankful it was running away with all 4 legs down. I mention this as many of you know I am so acutely aware of deer and elk beside the road at night and try to be so very careful. The car was ok (until we turned left into a gas station in Kayenta when I realized the bumper was bent in towards the wheel) but I was near hysteria --- it just felt like a really bad omen. The wind was tremendous in Arizona and after entering Colorado we decided to take the long route through Dove Creek and Naturita to avoid steep mountain passes as the rain and snow were blowing vertically either from the left, right, or head-on depending on our direction and it was really dark. Unfortunately it took us 11+ hours to arrive at the hospital. The turnoff from Highway 62 to Highway 550 to Montrose was the longest 26 miles I've ever driven in my life. We arrived after 7:30 am Friday.

When we entered the ICU ward at Montrose Memorial, the nurses told us they had been waiting for us and took us immediately to Caroline with Robert and Colleen by her side. The attending doctor, Dr. Felberg, told us they had been giving Caroline the strongest possible heart medicine to keep her blood pressure up, and her alive, until we arrived. Oh my god, had she suffered just so we could say good-bye? Colleen and Dr. Felberg explained to me that actually the septic type gases or substances, like ammonia, produced by the infections are a blessing as they go to a person's brain and just make them go to sleep --- it's like a sleep-inducing drug that eliminates pain. It's the reason Robert couldn't wake her. How in the world was she able to bowl Wednesday night???? To ensure Caroline wasn't in pain, they gave her morphine. Dr. Felberg swore to me she wasn't in pain. When I went to Caroline and held her and told her I was there, she opened her eyes very wide. She did the same when Diane and Robert spoke to her. I honestly believe she knew we were all there with her. They gave Diane and me time with Caroline and then began pulling all the tubes out of her body. That incredible body - that body that had been poked, tested, filmed, filled with too many drugs to count, bruised, and swollen yet still responding to her absolute will to live. What an amazing body. Her hands - which touched, felt, wrote, expressed her essence with and without words. Those hands that shook when I last saw her in Socorro, New Mexico, as she tried to hold or manipulate something. We all touched and held her, talked to her, and then her breathing began decreasing and she very quickly and easily left us. Our beautiful, bigger than life baby sister was gone from this world. Did Caroline fly away on the back of that deer from Flagstaff?

A life fact: Even though you know it's coming and you try to prepare, it still somehow is an absolute shock and your heart breaks just the same. I cannot believe Caroline is gone. I cannot believe I can't pick up the phone and call her or that I'll pick up the phone and hear "Suuuuuzie, this is Caroline." I cannot believe I'll never see those big brown eyes again. I cannot believe she'll never again drive me crazy with her tardiness or undeniable insistence on something. I cannot believe she won't walk into this house again with 15 bags filled with crocheting, knitting, books, and who knows what else. I cannot believe I'll never again laugh at her. I cannot believe I'll never again enjoy her outlandish sense of humor. I cannot believe she'll never again put her arms around me when I'm sad and cry --- like now.

Our sweet baby sister lived big and out-loud. It was with care and interest that Caroline knew the name of almost every one of the 800+/- residents of Ouray, Colorado. That was Caroline. Ouray was not only Caroline's home but the people of Ouray were her family. During her years in Ouray she often worked at 2-3 jobs there at a time from City Treasurer to waitressing. She was involved with numerous organizations, publicly played the flute and recited her own poetry, supported everything and everyone "Ouray", and ultimately co-owned Buckskin Booksellers with Robert. Caroline even had her own radio show on Sundays - Sweet Caroline's Oldies. She loved the Beatles - a year ago we took her to Cirque du Soleil's Beatles' show "Love" at the Mirage in Las Vegas for her birthday. Apparently she told lots of "sisters" stories as she played old songs that reminded her of our youth in Duncanville. Caroline remembered everything! As some of you know, in addition to her blog on the cholangiocarcinoma.org website, Caroline had been producing a film about her life with cancer and her impending death. She enlisted two of the Ouray High School film class students - Kelsey Winfrey and Zach Ficco. In fact, during one of my visits with her in Ouray, I tagged along with the three of them as they filmed a scene. I tell you, Diane and I had no idea what this film of Caroline's would look like.

As Caroline states in her film, her control issues were too great to leave the planning of her memorial service to others. Because of the weather post December 7 affecting Colorado, Nebraska, Missouri, Texas, and New Mexico, and because the editing of her film, which contains five hours of footage, had not been completed, Robert, Diane and I decided to wait until May to hold her memorial so out of state family and friends might attend. Caroline's good friend and soul sister, Nancy Wolkin of Ouray, had lunch with Robert and me a day after Caroline died and told us the town of Ouray wanted, "needed", to celebrate her life now. Following Nancy's lead, the people of Ouray held a celebration of Caroline's life at the Ouray Community Center on Wednesday evening, December 12. The Community Center was filled with Caroline's Ouray family of friends and food. Diane and I heard great stories and left with a greater sense of the woman Caroline had become and why she so loved these people of Ouray. Something that really pulled my heartstrings was the number of young people who got up and spoke of Caroline and the impact she had on their lives. Nancy Nixon, the teacher of the high school film class, and Zach and Kelsey, worked diligently to edit 17 minutes of the film Honestly, I had such mixed emotions about seeing Caroline on film --- I had no idea whether I could stand it but it was, after all, her wish. I think tears shot straight out of my eyes when she first appeared on screen but the film was both hysterical and poignant ----- soooooooo Caroline. I was so amazed and proud of Caroline, Nancy Nixon, Kelsey and Zach. I swear this should be a short on PBS or HBO --- truly. The film addresses a fact we all live with every day of our lives but seldom speak of: death - our own death. How brave and inspirational that Caroline would so publically address and share this intimate part of her life with anyone willing to watch. I'm in awe of her tenacity and courage.

Diane and I remained in Ouray with Robert until yesterday (Saturday, December 15) until the roads cleared. It was good for Diane and me to be with Robert and I think it was good for Robert, too. We cried and laughed together and shared this time with some of the people of Ouray - including Elwood Gregory, whom Caroline dearly loved. As some of you know, Caroline was on extremely strong steroids which affected her in some interesting ways and provided challenges to those around her. For one thing, the steroids gave her tremendous energy and she often cycled into a very manic state. I remember sitting in Dr. Bergen's office and telling him that if he couldn't reduce the steroids, he needed to prescribe them for her caretakers. In all honesty, there were times we all wanted to throttle her. On the other hand, they seemed to reduce Caroline's inhibition which was revealing and often a lot of fun. And ..... her head became even harder ---- ugh. She also became more compulsive and compulsive about unusual things - like needing to buy "things"; the need to shop, shop, shop (I hate to shop and could easily live the rest of my life without ever walking into a mall again); at night instead of going to bed, holding and fondling objects and refusing to get into bed even though she was falling asleep sitting on the its edge while holding these items; refusing to allow even the smallest scrap of paper in her possession to be thrown away; sometimes talking nonstop; a need to continuously dump everything out of her multitude of purses and bags to "organize" things; the need to cover every surface around her with her things - sometimes falling asleep in a bed covered with her prized trinkets and slips of paper. Obviously there were very real psychological reasons for each of these idiosyncrasies: not wanting to go to sleep for fear of not waking up; not wanting to waste precious time on sleep; the need to control anything she possibly could since she couldn't control the cancer; the need to see and touch everything, big or small, that meant something to her; the need to have as many days on her calendar booked with at least one activity so she knew she had events to look forward to and, God willing, days to be lived. Her mind --- so complex and so active. She became enthralled with a TV program about the Dallas Cowboy Cheerleaders' tryouts because one of her best friend's daughter was a Kilgore College Rangerette and one of her Rangerette friends had tried out for the Dallas Cowboy squad. Since she became more debilitated and house-bound she loved the TV show "House", "Dancing With the Stars" (heaven knows she probably voted from her home phone as well as each of her and Robert's cell phones), Oprah (previously she never could understand how anyone had time to watch Oprah!) ---- all of this after the year before admonishing Diane and me for watching too much network TV (although she was appreciate that we turned her on to HBO's "Big Love"). Problem: when visiting us in Prescott, AZ, after watching Big Love, she wanted us to take her to one of Warren Jeff's towns, Colorado City, located in northern Arizona. I told her no way (this was during his recent trial) - I had no doubt she'd want to get out of the car and talk to the locals. I'm surprised it didn't occur to her to attempt to haul Zach and Kelsey over there to film an interview.

It was hard being in their house - it was even harder leaving. My car's battery had died the night it reached 10 degrees below 0. Robert and I pushed it while he tried to jump start it; then I pushed it with Robert's vehicle - the battery tried to ignite but just couldn't quite make it. Robert and the 4-Runner wound up near main street. A friend saw Robert, stopped and jumped the car. Do you know you could sit by the road in a big city for a lifetime waiting for someone to stop and offer a hand? The sky yesterday was clear and blue. The roads were amazingly clear affording Diane and me safe passage out of Colorado. The snow capped mountains stood tall and strong acutely reminding me that this life is not of man alone.

The last time I saw Caroline was a few weeks ago in Socorro, New Mexico. She and Robert annually attend a mineral symposium there and I drove over to see her. I took her to the Bosque del Apache Bird Refuge where we saw thousands of assorted geese, ducks, cranes --- and even a coyote. It was the kind of day together that has left me with a special, very visual, memory of a beautiful day with Caroline. Beverly Bowden was going to fly into Phoenix this Thursday and she, Diane, and I were going to drive to Ouray to spend three nights with Caroline prior to Christmas. We were all really excited and I'm so happy Caroline had that time on her calendar to look forward to. Ian was arriving this Thursday to spend Christmas with them. I'm so sad Caroline didn't get to see Ian one more time - she so loved him and got the biggest kick out of him and the events of his life.

From the beginning, Caroline's oncologist, Dr. Bergen of St. Mary's in Grand Junction, wanted to provide her with the best quality of life for as long as possible --- and that's exactly what he did. In fact, Dr. Bergen probably had no idea how well and long a life he would help give Caroline. As those of you who have read her blog know, she packed more into the last two years than many pack into a lifetime. I will be forever grateful to Dr. Bergen and Caroline's other doctors for the incredible care they gave her. She so wanted to live but, as Diane says, if Caroline lived to be 150 she'd still have a zillion things she wanted to do. Well, she got to mark a whole lot of them off her list. Dr. Felberg and the staff at Montrose Memorial could not have been any more compassionate and concerned - I will forever remember their care of Caroline and us.

****************************************************************************************************************************

Caroline's memorial will be held in May and everyone is invited. Be forewarned - it WILL be a celebration and it will be as unique as the woman being celebrated. Caroline had conspired with one of the local entrepreneurs, a man named Jody from New Orleans with an incredible kick-ass accent, to be in charge of a New Orleans jazz style funeral parade. Caroline has requested that part of her ashes be divided into baggies and given to those who promise to take her along with them to one of this world's beautiful spots and sprinkle her there. She would like fireworks - which Robert, who is on the city council, is going to try his best to arrange. Her film will be shown. I have no doubt that warmth and love will be extended to Caroline's family and friends by the people of Ouray. It will truly be a celebration of a very special life in America's little Switzerland - Ouray, Colorado.

Diane and I thank you for your love, support, comfort, and prayers these last 2+ years. It meant the world to Caroline and kept her going. As many of you know, I could not have gotten through this without it. While this is one of the most heartbreaking times of my life, I am forever thankful for my time with Caroline, my family, and my friends.

Love to you all,
Suzie

P.S. Please let me know if you think you may want to attend her memorial celebration in May and I'll let you know when the exact date is set and keep you posted as plans proceed. suziew@cableone.net

P.S.S. The attached pictures were taken March, 2007, while Caroline and Robert were visiting his family in Mississippi. They include Caroline, Robert, Lois (Robert's mother), and Ian (Robert's son and Caroline's step-son). I just love these pictures. The reason for the "You're Looking at a Legend" shirt is: a friend's daughter who lives in another city in Colorado mentioned that she was going to see Caroline in Ouray to someone. The young man replied he knew Caroline and said "Caroline's a legend." And that she truly is!

Friday, December 07, 2007

The Saddest Blog

Caroline died this morning at 9:09 at Montrose Memorial Hospital. She was taken to the hospital yesterday by ambulance, after her husband Robert and Colleen Hollenbeck, our local home health care nurse, were unable to get her to wake up, and after consultation with the St. Mary's Oncology Center. Her blood pressure was very low, as was her blood sugar level. The emergency room determined that she had massive infection, probably in the liver, as well as bladder infection which had been diagnosed the day before. She was put on high-powered antibiotics to try and control the infection, with little response. Caroline's sisters, Suzie West and Diane Gray, drove through the night from Prescott, Arizona, arriving in Montrose about 7:30. Caroline was able to open her eyes and recognize her sisters, as well as Colleen, this morning. The attending doctor had told us that Caroline was just being kept alive by the blood pressure medications, and we decided to stop them, as there was no chance of her coming back from the infection. Her husband Robert, sisters Suzie and Diane, and Colleen, the home health nurse were with her at the end.

Caroline asked to be cremated, and part of her ashes made available at her memorial service for people to take and spread wherever they wish. The memorial sevice date will be posted later when determined, but will be after the movie she was making about having cholangiocarcinoma is finished. In lieu of flowers, please send your donations to Second Chance Humane Society based in Ridgway, Colorado, the Ouray Public Library, Hospice and Pallitive Care of Western Colorado, or Cholangiocarcinoma.org.

Thank you to all our friends and to everyone who has corresponded with Caroline over the last two years of this journey. We gained so much support from so many friends and relatives, and families of fellow cholangio sufferers. Our love to you all.
Robert Stoufer, husband of Caroline

Thursday, November 29, 2007

Something New to Live For; Headed to Los Alamos

New bass guitar! Thanks to Steve & Ruth for sending the bass guitar. This will give me a new interest in life.

We are headed to Los Alamos, New Mexico to do a gem & mineral show. Then I come back next week do chemo again at St. Mary's in Grand Junction.

I'm sorry I've not been e-mailing or blogging. I have to put my leg in a difficult position to sit at the computer.

We saw three bald eagles on our way to Montrose last weekend. We have a bit of snow in our front yard.

Gotta run. Have to leave later today.

Thank you for all your prayers.

Just up here in Colorado staying warm.

Sincerely, Caroline

Wednesday, November 21, 2007

Sorry I haven't blogged in two weeks!

TRAVEL
We went to Socorro two weekends ago. I got to see my New Mexico friends, Dave & Mary Lou Comer and Toni Duggan. My sister Suzie came from Prescott and we went to the widlife refuge. We saw a coyote there. Got home and did poetry classes again and then went to Denver for a second time to talk to Dr. Durham and SIRT spheres. She said the juandice is an issue and I have to get my billirubin down below two and it's at 8 currently.

MEDICAL
Dr. Bergen in Grand Junction referred me to Dr. Durham in Denver. So did Dr. Kane from CU Med Center. They also want me to see another oncologist at CU Med Center, but Dr. Durham said we don't know if that was necessary. So last week, we saw Dr. Bergen on Thursday for a bone hardener infusion, then drove to Denver that night for our appointment with Dr. Durham. There is another chemo that Dr. Durham thinks I should try, as well as Dr. Bergen.

I also have an appointment for a stent replacement and to watch for malignancy in the liver bile duct in Denver with Dr. Fukami on January 16th.


BEEN FEELING TIRED AND DIZZY LATELY
I have felt tired, dizzy, confused, clumsy, pain, and fatigued. I still have hearing loss in my left ear. My hair is growing back which is nice. I'm going to a luncheon next week in Grand Junction for my support group which I always enjoyed.

And my 53rd birthday on Sunday! So I will make it another year.


Thanks again for cards, letters, help, support, prayers.

Just up here in Ouray happy to get one year older.

Sincerely, Caroline

Wednesday, November 07, 2007

Doing Better

We got home Saturday from the surgery on Friday. I rested up on Sunday, attended two writing classes, one Monday, one Tuesday. Jaundice isn't gone, but is much better. And I confess: I bowled last night at the Elks in my league for the first time this year. My average was 66! But I had a good time. Unfortunately, my feet are swolen today as a result. I weigh 178 pounds and every week it's a challenge to find thingst to wear; hence, the gastroenterologist gave me an RX for a diuretic. He said it's mostly fluid build-up.

I saw both my oncologist and gastroenterologist today in Grand Junction. I'm to check in with Dr. Durham at CU Med Center in Denver to see about radioactive spheres or chemoembolization. I liked her very much and am willing to work with her. I also need to see if there's any clinical trials out there. I have a friend doing stem cell therapy at MD Anderson and that is another possibility.

I am going to Socorro, NM tomorrow with Robert for a gem & mineral show. There's a wildlife refuge near there that I really enjoy. I posted a picture last year from our trip there. There are Sandhill Cranes and Snow Geese - they make they neatest noise. My sister Suzie is coming from Arizona - it's her day to watch me.

So thank you everyone for your thoughts and prayers. I meant to call some friends in Denver while I was in the hospital, but my throat was sore from the ERCP. I also have a clogged ear from lying on my side for almost four hours and I can't hear out of it very well. I used an ear irrigator and apparently made it worse.

Just up here in Colorado, truly appreciating every day I have left, and looking forward to seeing the big birds in New Mexico again.

Sincerely, Caroline