Written Stuff

Memorial/Wake will be held on Saturday, May 10. Wake from 1 to whenever, with the tree planting at 3 and the tequila toast at 7?

Here's the Press Citizen Article Dede mentioned in the comments...

Alternative education pioneer, 'lady of letters' dies
Diana Paulina, 62, succumbs to cancer

By Rob Daniel
Iowa City Press-Citizen

Diana Paulina is being remembered as a strong woman who influenced the lives of alternative school students in Iowa City.

Paulina, 62, died early Monday following a lengthy battle with cancer. She had taught language arts, reading and drama at the alternative Community Education Center in the Iowa City School District for 14 years. In recent years, she had worked as vice president of Avalon Networks in Iowa City and as co-owner of da Woods Bed and Breakfast with her husband, Kevin Crawley.

Hani Elkadi taught with Paulina at CEC from 1984 until her resignation in 1998. He said she played an integral part in the growth of alternative education in Iowa City, including winning Educator of the Year from the Iowa Association of Alternative Educators in 1996. Elkadi said he, Paulina and current Tate High Principal Stephanie Phillips were part of the same generation of alternative educators.

"She would give hours and hours of time," Elkadi said of Paulina. "(Her death) closes a huge chapter of alternative education in this town."

Phillips said she became friends with Paulina while working as a coordinator in the district's Central Administrative Office, where the CEC was housed until 2005, when it became Tate High and moved into its own building at 1528 Mall Drive.

A painting depicting Paulina sitting on a crescent moon that had been recovered from the Lenoch-Cilek building downtown now is displayed at Tate High. Phillips said it represented Paulina's love of reading and students.

"She was a lady of letters," Phillips said. "I was always impressed with her ability to connect with disenfranchised young people. It's a huge loss."

One of the students she connected with was Katie Bender. Now a 33-year-old cosmetologist in Iowa City, Bender said Paulina was a great influence on her and anyone she came into contact with.

"She was an amazing woman," said Bender, a 1994 CEC graduate. "She was an independent, decisive voice. She had a great faith and determination to see the worth in everyone. She was very strong-willed, and she brought strength to her students."

Arrangements are pending at Lensing Funeral and Cremation Service, with no date set yet for services.

Here's my first draft of the obit:

Diana Paulina died peacefully Monday morning, after fourteen months of intense negotiations with lung cancer.

Diana was born and raised in Dearborn, Michigan, and received her undergraduate degree from the University of Michigan in 1969. She spent five years in Europe, taking courses in what her father would call 'the school of hard knocks,' and then enrolled in the Alternative Education graduate program at Indiana University. After a brief stint at a one-room alternative school in central Iowa she moved to Iowa City to complete her Master's coursework.

In 1980, she co-founded and co-directed Unbound, Inc, a residential counseling center for people leaving cults. She was a language arts, reading and school of hardknocks teacher at the Iowa City alternative school, CEC, from 1984 to 1998. She also served variously as librarian, volleyball and softball coach, drama instructor, videographer, prom coordinator, banker, computer teacher and troubleshooter, assistant janitor and political agitater. She was an active member of the Iowa City Education Association, serving as both Vice-President and President. In 1999, she took a position with Avalon Networks. She retired from there in 2003 to care for her parents and to open da Woods Bed and Breakfast.

She was diagnosed with cancer in 2007, and she blogged much of the experience. Friends are invited to kevin-and-diana.blogspot.com for the gory details.

She loved wordplay, reading, music, gardening, crafts, learning and teaching. She was also pretty fond of her cohort of thirty years, Kevin Crawley. Diana approached everything she did with passion and determination, and she served as a role model, inspiration and font of wit and wisdom to her students, friends and family.

She is survived by her husband and her mother, Marie Paulina, both of Iowa City, her brother Carl Paulina, of Ann Arbor, MI, her sister Susan Johnson of Osceola, WI, as well as sixteen brothers-and-sisters-in-law, twenty-two nieces and nephews and a host of friends she called her 'Iowa City family.' She is preceded by her father, Walter "Shorty" Paulina.

A memorial will be held on Saturday, May 10 in da Woods at 2030 and 2040 Dubuque Road. A tree will be planted around 3 pm, with the wake going quite a bit longer. In lieu of flowers, memorials may be directed to the Emma Goldman Clinic.

Writers and Biographers Needed

So, there's this obituary thing...

I do fancy myself a bit of a writer, but I don't much like deadlines. Anybody who'd like to throw in some thoughts (which may end up re-written, plagiarised or ignored) is welcome to chime in, either here or at my email at kevin@dawoods.com

Also, I wondered about putting the blog address in the obit. It might give people who didn't know what was going on a place to catch up, but as that includes your comments, let me know if you think its a bad idea.

There's a basic un-proofed fact sheet below.
I'm not all that hot on dates, particularly before we met in 78, so fill in where you can.


Born: December 12, 1946

Dearborn
College
Europe
Master's Degree
Unbound, 1981 - 1991
CEC, 1986? - 1999?
Avalon Networks
da Woods Bed and Breakfast - 2004 - present

Survivors:
Husband, Kevin Crawley
Mother, Marie Paulina
Brother Carl Paulina, Patty Turpen
Sister Susan Johnson, Brad Johnson
Father John Crawley and Olive
Sister Kathleen Crawley, Tim Dybevik
Sister Ellen Thorn, Mark Thorn
Sister Sara Poser, Steve Poser
Sister Colleen Schell, Doug Schell
Brother Dennis Crawley, Jane Pacheco
Sister Ann Crawley, Jeff Gerner
Brother Patrick Crawley, Kerry ODell Crawley

da Nieces: Valerie Johnson, LIllian Paulina, Amber Johnon, Carrie Johnson, Robin Dybevik, Lauren Schell, Elizabeth Thorn, Kathleen Thorn, Hanna Thorn, and Keira Crawley

da Nephews: Andrew Johnson, Andrew Dybevik, Joe Dybevik, Sam Poser, Gabe Poser, Patrick Schell, Gavin Crawley, Alexander Gerner, Christian Gerner, Liam Crawley and Emmet Crawley

Diana's Next Great Adventure

...began officially a couple of minutes ago. May God have mercy on us all.

Would a memorial next Sunday work, or should we push it to the weekend after?

The Eye of the Storm

-- a multi-leveled title.

Partly, it's the constant flow of visitors -- Nancy got here Wednesday (last Wednesday, now -- she left today), Carl left Thursday, Pat and Kerry arrived Friday, and Mom, Dad, Katie, Ellen, Sara, Colleen and Ann were here yesterday. There was mulching and raking and cooking and cleaning and we even managed to get my office at work ready for the new paint and carpet job next week. There are also the visits by Dede, Sam, Seth, Lee, Marcy, Janet and JJ (and I'm sure I've forgotten a couple). I got to chat with everyone, I think, and everybody hung out with dp at one time or another, but it still kind of feels like it all goes on around us.

There's also the weirdness of waiting. Behind us is a little over a year of battling with cancer -- four surgeries, three months of chemo, and forty-one radiation treatments, and ahead, the imminent death of a woman who's meant a lot to all of us. Right now, though, we're in between, hanging out and reading Harry Potter (We're getting close to the end of book 6 now!)

Finally, there's the concept of jumping in the dungpit -- once you're in there, it's not as terrible as it looks from the outside. I remember trying to empathize with what I thought at the time was the horror of others who've been in similar situations, but now that I'm there, I'm reminded of what Sam said when he moved to Cedar Rapids -- "It's not that bad." dp is not in pain -- there was a bad headache on Monday, but that seems to have been a one-day deal. She's also not zonked out on painkillers -- we've learned that aside from being available when you push it, the PCA is also doling out 1 mg/hour as a baseline, but she's pretty used to that now. Some days are better than others, but every day is still worthwhile.

There are a bunch of photos showing the highly-presentable Woods, but for today, all you get is the the chemo-cap models...

Back in DaWoods again

Hello all, it's tonight's guest blogger. I arrived this afternoon after an uneventful trip and apparently brought the first warm day of the season with me. Everyone has commented on how nice the weather is today. (Must be my sunny personality.)

I must say it is good to be here. There is something magical about these woods. People say that about my space in New Mexico, too, but I really feel it here. There are bits of green peeking up through the ground and the birds are singing.

In terms of an update, I don't think there's much new to report. dp gave me her big smile when I arrived and wants to ensure that I am getting enough chocolate. I think Kevin has done a good job of describing her in and out states. Just when you think she is off in her own world, she says something that lets you know she's right here with you.

Rumor has it that we may be seeing some of you this weekend. I'm looking forward to it!
Nancy

A Sunday Sort of Update

Yes, we did finish The Goblet of Fire, and we're now on chapter 12 of The Order of the Phoenix. We spend a fair amount of the day reading.

Food just magically appears. My mom's been cooking and baking, as has Patty, and Cinda stops off every couple of days with various goodies. I fried myself a meatloaf sandwich for lunch, and that's the most I've put toward food preparation or cleanup in a week. Tonight Patty is cooking a Roman something -- she says it's the meal she gets for her birthday. I don't know anything more about it, except that it smells pretty good up there.

We continue to hang out in da Woods -- the weather's still pretty crappy, but Dede noticed Bardo the barred owl over across the ravine, and they say it'll hit 60 by Tuesday. Life, as they say, goes on...

Oh yeah, Nancy provided the photo.

Another Friday in da Woods

Well, what to say? dp looks like she's in better shape today than she was when she came home last week. She's not eating or drinking a whole lot, but as long as we don't move her around or bump the bed much, she's in no pain -- she still has the morphine PCA, but she hasn't hit the button in a couple days now. She does have a harder time distinguishing her dreams from what I'm calling reality, but she's still on top of things most of the time.

Lily flew back to NYC today. Perry heads back to Oregon on Sunday, and Patty is training back to Ann Arbor on Monday. Mom is still here, making food and entertaining visitors and generally holding down the fort.

So, we hang out while we can. We have said all the important stuff, I think. It really comes down to the same three words -- "I love you." Do yerself a favor, and say it to someone today.

Wednesday

I'm pooped, so this is short. Okay day -- Carl, Patty and Lilly not only hung out, but cleaned up the back yard. Perry was here most of the day. Diana slept more than she has the past couple of days, but when she was awake, she was very much here.

Tuesday night in Da Woods

I stopped by on the way to band practice to bring my customary offering of single malt scotch. I sampled some to be sure it was safe. On my way home, it occurred to me that the scotch might have spoiled and that perhaps I should assure Kevin's safety by testing in just one more time. It is fine.

Diana says "thanks for all the visits!" Lilly, Carl, Patty, Drew, Cinda are all guilty of hanging out and spending time. Jeffy Vaughn has used Kevin and Diana as an alibi for a long time and now he's claiming to have been here when the fire started at his previous place of employment. All bets are off.

A social worker from Hospice came and was impressed. This is my interpretation. Damn it, why wouldn't she be?

In our own way we are all thinking about saying goodbye and it's good to think about doing that. I'm not going to say goodbye. I'm very grateful to be local and to have the luxury of spending time, and being whatever passes for "normal" fo us.

As one of those Beatles said, "You say goodbye, I say 'hello.'"

And what's up with Olive? She is just GREAT. Casually hanging out and being integral. I can see how all you Crawleys got reared.

Okay. I'm going to hang out more.

For right now, it's a sleepy evening in Da Woods.

S.

Open Windows

From the time I was pretty darned young, I was going to be a veterinarian, like my dad. My high school and the first couple of years of college were all solidly based on an aspiration.

After I got to Ames, I started to have second thoughts, and I decided to take an occupational interest survey to see what the data said. The way to get an interest test at Iowa State was to go through the University Counseling Service, and before you could take the test, you had to have an interview with one of the staff psychologists.

I got there to take my test, and they gave me a short form to fill out, with name, rank, etc, and a short answer that was something like "what problems can we help you with today?" I wrote "if I'm not going to be a veterinarian, whatever will I do with my life?" When I sat down with the counselor, he began by looking over my short form. He read the question aloud, and then replied "for starters, you can stay away from open windows."

After we'd talked for awhile, he re-evaluated, and said "I guess you can leave the windows open after all..."

I've been thinking about that exchange more than a few times, lately. Today, after I warded away the hospice chaplain, I got a call from one of their social workers, who really wants to come for "a visit."

Maybe I'm horribly mistaken, but I think that both dp and I have made our peace with this. Yeah, it sucks, and yeah, it'll hurt, but I think the denial, bargaining, anger, depression and acceptance bases have all been covered. So tomorrow, we'll let the social worker do her thing, so that she can reassure herself that it's safe to leave us near open windows.

Anyway, today was a pretty busy day for both of us. Dede did a massage at 10:30, while I went to work. The hospice nurse was there at 1 to redo her foley, and then there were visits by Lilly, then Bree, then Tim, Robyn, Lauren and Joe (who fetched root beer floats) and then Jeff and Lilly again. dp's probably eaten more today than she's had in the last week.

Sunday

Nothing much new to report, I guess. Dede gave her a good massage, but most of the day was spent resting.

She's still here sometimes, but spending more time somewhere else.

Visitors

After a whirlwind cleaning and yardwork marathon, my sisters and dad headed back north again this afternoon. I think Dennis is hanging for another day or two, and Mom is here for the duration. Cousin Linda and partner Mary arrived shortly after the girls left -- they got the nickel tour (their first time in da Woods) and mostly hung out with mom and Dennis while dp and I got quiet time -- both of us, as well as Dennis were up most of the night.

Sam came by this afternoon, and he did find the irish whiskey, and I got a nice phone call from dp's sister Sue and her husband Brad.

Marie seems to be coping with this okay, so far. She was watching the History channel when I checked in on her today.

Trooley has become the ferocious watch dog, warning pretty much anyone who comes downstairs that he's on duty. dp is relatively pain free, as long she's not moving around much. Given that, we're reconsidering going back for last three radiation treatments, which are just for pain control anyway.

I think we're going to be early tonight.

Dede

It occurred to me tonight that a way under-represented heroine in this blog is Dede, another woman who has been like a sister to Diana for longer than I've known her (Nancy being the other).

When dp was first diagnosed, Dede stepped up to oversee the care of Marie, a job she's continued ever since. She's been there for chemo sessions, Doctor's visits (until we realized she kinda freaked out Dr. C) and countless in-patient visits. She's brought comfort and pain relief with massage and her own special "Dede-ness" as she's been here week after week, day after day.

I've written about reading the fourth Harry Potter book, but I didn't mention that when the hospital library told me it was checked out, Dede jumped on her scooter and grabbed it from the public library, and threw in sub sandwiches to boot. That one's easy, because it only happened a couple days ago, but there have been a countless number of acts of assistance and kindness during the last year.

There are an incredible amount of people who have helped out over the last year, to whom I will always be grateful, and maybe someday I'll get around to showing them the recognition they deserve as well. Top of the list, though, has just got to go to Dede.

The photo is part of the virtual vacation stuff we did last summer.

Home again naturally

Kevin is taking a break, this is Katie, honored to be letting everyone know that all is well. DP is home and resting, we think comfortably. As you know, she got home last night and had a little bit to eat and drink. Marie came to visit last night and mother and daughter were able to spend about three hours together. Kevin's mom and dad arrived last night, Brother Dennis got here at 3 a.m. Katie, Sara, Colleen and Ann got here at about 11:30 and we all gathered this morning. dp is weak, but definately with us, as Kevin says and we all agree, her smile lights up a room. She chooses her words carefully, but I think we're used to that as well. Ellen and Mark arrived this morning as well.
It has been a beautiful day, Kevin and dp are progressing through Harry Potter and she has been seeing people who love her, mainly Kevin's family but also Seth and Ron. Other out-laws, including Steve Poser, Jeff Gerner, Tim Dybevik and Mark Thorn are also here to lend support and rake and help. Wonderful, loyal and loving Dee Dee came to give her a message before she went for another radiation treatment, always working to make her feel loved and comfortable. I guess the news of the days is that with brother-in-law's and Ron's help, while dp was getting her radiation treatment, we were able to move her bed downstairs, and as Kevin puts in, she is home for the first time in about five months. Her bed is right down at the bottom of the stairs, so she can look out of the window onto the deck and out to the woods. We were a little dubious that the ambulance dudes could get her down there but they took the outside route, and she is safe and sound. Bree and Aerial (sorry for spelling) came for a visit this evening.
We, feel very honored to be here and to be able to help. We know everyone feels very helpless and to be able to rake and take down lights and put up lights and to pull creeping charlie and fill bird feeders and wash windows, makes us very happy. We don't know what tomorrow brings, but we know dp knows that so so many people love her, and she has the best life partner she could ever have.

Going Home

Things seem to be set up.

We'll go downstairs Real Soon Now for the first of what should be five radiotherapy treatments. Someone from Hospice will be here around 12:30 to take out her IV, and change to a morphine PCA that is administered subcutaneously. That will be more stable than the IV, but it means the only fluids she'll get are what she can take by mouth, and that hasn't been going so well. That puts us much more on the 'days' than 'weeks' side of the prognosis. If you want to stop by before dp's Next Great Adventure, I'd plan on doing it pretty soon.

At this point, I'm thinking we'll do the Memorial service much like Shorty's, which includes scheduling it a couple weeks out. That will give those of you who do want to engage in our very informal process of planting a tree and throwing a party a little time to work out logistics.

I haven't allowed myself to go here before now, so those plans are very tentative. I'll post more as we develop a plan.

Meanwhile, "Real Soon Now" has turned into "Eventually" for the radiotherapy treatment. Since the Hospice person is scheduled to arrive at 12:30, maybe we'll do that first, and RT after that. I don't really care, as long as we're home by this evening.

dp, Kevin, and the Goblet of Fire

When I told Dr A about the three-to-six-month prediction, she said she thought that was awfully optimistic. "Days to weeks" is her analysis.

There are times when I think even that's optimistic. We're working on Harry Potter and the Goblet of Fire, but I'm not stopping when she dozes now, cause it's a fitful in-and-out sort of dozing (and she says it's a nice way to wake up.) Her throat seems to have gotten worse -- even thickened liquids seem to start her coughing, so we've gone back to the little lollypop sponges. Her blood sat is low, even with an oxygen mask on, but when she does wake up, she's pretty coherent, and generally manages to crack a joke or two. And then there's that smile, which still lights up the room, to the comments of more than a few staff.

I think we can have our cake and eat it too, though -- we should be able to do most of the radiation treatments outpatient -- Dr A says that Hospice will pick up the cost of the ambulance to transport her daily from home to the hospital. Social Work was supposed to come visit us today for a referral to Hospice, but it was a pretty busy day, so it's quite possible they just missed us. Still, if I don't hear from them pretty early tomorrow, I'll just go call Hospice myself.

I'm getting pretty good at working this hospital. When it seemed to take a long time to get through official channels that we wanted to proceed with the radiotherapy, I just walked over their office, found Dr. B's nurse, and told her what was going on. Shortly after that, dp's nurse came in to say (somewhat incredulously) that radiotherapy was sending a person up to transport her there. We got the aiming CT done, and he'll compute the best paths to hit the tumors before we go back tomorrow. They like a week to do that, generally. Dr. A was also pretty pleased that he could even get it down to five treatments, saying that twenty or more had been the norm not too long ago.

Despite all the frustration that goes with any inpatient hospital stay, we're truely grateful to most of the staff here. Dr.s A, B and C have all been phenomenal, and the vast majority of nurses and NA's we've worked with have been fabulous. Still, we're both ready to go home. There's only so much sleep you can get on a reclining chair, and a view of da woods beats a view of the fieldhouse...

Me? I'm doing okay, so far. It took a bit to reframe from fighting cancer to accepting cancer, but I've still got my tasks. I'm dp's advocate (and a damned good one, too), and we've got Hospice to set up and stuff to get done. I'm planning on leaning on a lot of people when my tasks are completed, though...

Palliative Treatment

Another day at the U. Our task today is to determine if we want to do palliative treatment first, or just proceed directly to Hospice (do not pass Go, do not collect $200).

We turned down a bone scan this morning, because dp doesn't want to do anything she doesn't have to, and the bone scan was actually scheduled last week, before the MRI.

It's 8:30 now -- soon, they are supposed to load her onto a cart so that we can go have a 'consult' with nuclear medicine. We need someone to tell us a timeframe today -- I'm thinking they are not going to want to do that, but we'll see...

Our radiotherapy doc is Dr B, who sat down with us and showed us the MRI scans. There are at least seven different tumors running down the length of her spine, starting at her shoulders and going to the small of her back. Radiotherapy should help relieve the pain in her legs, and maybe give her back bladder control, but they don't hold a lot of hope that they can give her the use of her legs back. I pressed Dr. B to see just how few treatments we could get away with. He was already recommending five treatments instead of ten, but he'll see if we can get away with as few as three. That would get us home Friday or Saturday.

I expect we'll start talking to the Hospice folks today. We're both committed to Hospice at home -- I'll see how much time they can give me to go to work each day, and we're hoping we can get some blog-reading volunteers to pitch in.

Nobody, of course, wants to answer the really hard question -- how long do we have? Dr. Y (who in charge of our just-arrived wet-behind-the-ears resident) went statistical -- three to six months, although I'm getting the feeling that it's closer to three than to six. Sometime today, we'll talk to Dr B. (who was here yesterday during the only hour I wasn't here) - if she can't pin it down, probably nobody can.

Bad News

Things are changing fast -- in her PT session, dp couldn't raise either leg off the bed today. She's got a little more control of her right side, but it's also starting to be affected by whatever is going on.

We still haven't heard much. They brought in a portable x-ray about nine last night, and took a bunch of films. I can tell by the changed sheets that dp was taken somewhere after that. Her memory is pretty hazy, but she thinks it was for more x-rays. The nurse came in a little while ago, and said that there's an MRI scheduled for 12:30 to look at some "cord issues" (she said this while pointing to the base of her own skull).

We're still waiting to talk to a resident, but it's the first of the month (Happy April Fools), and they're changing rotations today. The name of her Doctor is on the door, but it's not Dr. C -- someone told dp he (Dr. C) was in to see her this morning while she was sleeping.

Meanwhile, a fresh young volunteer person came in to ask if we needed anything. At first, we said 'no,' but then she asked if we knew about the library. They've got the fourth Harry Potter book, and they called to say they were sending it up as we were finishing up the last chapter. (chapter 22, for those of you who go back to Unbound days...)

A couple of Doctors just came in. They again asked dp about movement and pain, and then said that they suspect a spinal tumor. They'll put her back on steroids immediately, to try and get some short-term shrinkage of the tumor, and the MRI will be to look for that.

...just got back from the MRI. They made me stay the waiting room (or was wait in the staying room?). dp says she stopped the test, but it took the hour that they said it was supposed to be. I'm thinking they might have ignored her pleas to stop until they got enough.

Now a resident came in to say that her potassium had dropped a lot yesterday, so they've done a couple of EKGs. They suggests that she's having a mild heart attack, so now we're waiting for the cardiology folks to come up and have a look at her. This seems like a crappy place to publish this, so I'll wait around a bit and see what happens next.

The cardio folks came in and listened to her heart. It sounds pretty good, and there's an old EKG somewhere that shows that she's had this rhythm before. They suggested another beta blocker, but weren't too concerned.

This was followed immediately by a neurosurgery resident, who did the same poke and prod and "how's the pain in your legs?" routine, and then disclosed that the MRI shows multiple spinal tumors. They don't know exactly which ones are causing the problems, so they want to nuke them, instead of the more normally-prescribed surgical intervention.

Still, this is the diagnosis I've been dreading for over a week now, and whatever treatment they choose is definitely in the realm of 'palliative' care.

They've sent up the neurosurgery resident that I talked to last Friday -- the guy to whom I told my fears, only to have her discharged the next day. Well, at least I got to say "I told you so..."