This Beginning is the End..

...and this end is a new beginning. ;)

I've given the matter some thought, and I've decided that this story -- the story of Diana Paulina -- is completed. This blog will remain as a tribute to her, and you're welcome to leave comments here if you wish (If you're a comment spammer, you might want to consider the karma you're messing with), but this is the last post.

There is, of course, life after Diana Paulina, and I'll be hanging out with Nancy, Cranium Man and some other people writing about that at these new digs. If you know us this well, you might as well come see what happens next.

If you've just gotten here, I suggest going to this first post in March of 2007 and working your way forward.

One final note -- I meant to say that we got to within a hundred pages of the end of seventh and final Harry Potter book. I finished it myself the morning of the Memorial. It was fun, and I do a mean Mrs. Umbridge, but I doubt I'll be reading it again for awhile.

The last words seem like they're important, so I've been thinking back over some of dp's in her last days. Here's the one I like best:

Wow.

One More Tribute

The Memorial was lovely, moving, and really hard. There are pictures of the tree planting, but I'm not ready to go over them yet.

Here's the article that ran in the Gazette on Saturday. It didn't run in the online edition, so it doesn't google.

‘The magic of Diana’

Former I.C. teacher blogged about her battle with lung cancer
By Erika Binegar
The Gazette
IOWA CITY — Those who knew Diana Paulina, 61, of Iowa City, remembered her this week as a dedicated teacher and witty word game enthusiast who enjoyed making things beautiful and never had to raise her voice to be heard.

“Diana had a real presence,” said her husband, Kevin Crawley. “She’s the kind of person you meet and you just know right away that this is a pretty extraordinary person.”

Her brother, Carl Paulina, agreed. “That was the magic of Diana,” he said.

Paulina died peacefully April 28 after 14 months battling lung cancer. She blogged much of the experience to keep her family and friends up to date, and knitted about a dozen “chemo caps” in canary yellow, turquoise and bright red yarn Crawley, 52, of Iowa City, said his wife was an amazing person who inspired others. Paulina, who loved teaching, reading, music, crafts and gardening, believed there was no such thing as a bad pun, Crawley added with a laugh.

Carl Paulina, 58, of Ann Arbor, Mich., said his older sister taught him to dance, was extremely quick in conversation, didn’t turn away people in need and never shied from responsibility.

“When she was really young, she was already sitting at the grown-up table,” he said.

Paulina, who was raised in Dearborn, Mich., earned her graduate degree in alternative education from Indiana University.

In 1980, Paulina and Crawley founded Unbound Inc., a residential counseling center for people leaving cults. For 10 years, they helped those individuals make sense of what had happened to them and helped them reconnect with family.

From 1984 to 1998, Paulina was a language arts, reading and “school of hard knocks” teacher at the Iowa City alternative high school, CEC.

Paulina didn’t agree with traditional schooling, or shuffling students from one class to another at the sound of a bell, Crawley said. “She always thought it was more about turning people on to education, showing them that they could learn,” he said.

Paulina would read to her students in the morning and let them create art inspired by that story in the afternoon. She took students bowling on Friday afternoons and taught them to keep score — sneaking math lessons in through the back door.

In 1999, Paulina, an organizer, became general manager of Avalon Networks — the first private Internet service provider in Iowa City — and helped tighten up the business, Crawley said.

In 2003, Paulina, her parents and Crawley began running Da Woods Bed and Breakfast out of two houses tucked into the woods on the north side of Iowa City. It was something she could do while taking care of her parents at home, Crawley said.

Because Paulina believed dessert wasn’t just for dessert, her guests were treated to homemade scones and cream puffs for breakfast. A memorial celebration is scheduled at 1 p.m. today at Da Woods Bed and Breakfast, 2030 and 2040 Dubuque Rd.

Gazette writer Stephen Schmidt contributed to this report.
Contact the writer: (319) 398-8255

Pre-Memorial Update

News-type stuff:
The other local paper, the Gazette (do they still call it The Cedar Rapids Gazette in Cedar Rapids?) also wants to do a story about Diana. The reporter hasn't actually talked to me yet, but I heard that she called Carl. They said they wanted it to run "before the Memorial," so I guess that means Friday or Saturday. I'll dump it here when it runs.

The principal of Elizabeth Tate High School, the successor to CEC, left a message on our voicemail today. They want to name a scholarship after her (calling it, appropriately enough, the Diana Paulina Memorial Scholarship). She's asking for my okay, so I'll be sure to give that to her tomorrow.

Memorial stuff:
My family ROCKS! I've got a tree for Saturday (along with a really nice rock), and my sisters (it almost feels like that should be a capital 'S') tell me that my other responsibility is to have an extension cord ready to go in the garage. Seth is picking up a quarter-barrel, and I'll probably add a case of wine. (Do I still get the tables?) They're all consulting with Dede and Nancy, so I'm just trying to stay out of the way.

Please don't try to park anywhere in the driveway on Saturday -- there's parking on the Dubuque Road, which leads up to ACT's parking lot. We'll have the lane open for deliveries and handicapped access, but if you can carpool, that's probably a good idea.

We'll be around all day Saturday. The place will probably be presentable by 1, and the Planting of The Tree will be right around 3. Anyone who wants to hang out for the potluck wake afterwards is welcome to do so.

Me stuff:
Life here is still weird, but going on. I'm still making mental notes of stuff to tell dp, but I don't seem to be wracked with depression or anything.

Bob asked if I was going to keep blogging. After the dust has settled, I don't know. I'm not sure that my life sans dp and life-threatening illnesses is really going to be enough to keep folks coming back. What would you folks want to do here?

The photo is a panorama off the back deck, after Clan Crawley was through mulching it.

Diana Paulina, 1946 - 2008

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

A memorial celebration will be held from 1 pm to whenever next Saturday, May 10 in da Woods at 2030 and 2040 Dubuque Road. A tree will be planted at 3 pm, with the potluck wake going quite a bit longer. In lieu of flowers, memorials may be directed to the Emma Goldman Clinic.

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 agitator. 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, puzzles, 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.

Open Windows Update

I'm doing a lot better than I expected I would be. I started getting caught up on all those appointments I've been putting off -- car servicing, doctor and vet visits, lawn mower repair. Maybe I'll call somebody about the tree on the roof...

I don't have a lot of people around right now, and I'm pretty happy that way. I've told a couple of people that I'm probably in better shape than they are, but I'm not strong enough to take care of them right now.

I'm sure I'll need some help with the memorial -- we're going potluck, since I have absolutely no clue how many people might show up. I'm also not going to make any rain provisions, so think sunny thoughts. I guess I should get some tables and chairs and beer and stuff -- if you want to help out with those kind of arrangements, give me a holler.

Sent the obit to Lensing this morning. I'm going to ask them to run it tomorrow. I'll post it here later.

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..."

Back in the UIHC Again

We're back at the U again, this time on the fourth floor, in Dr. C's service.

dp's legs have been getting more painful, to the point where she couldn't sit up without hurting a lot. She's okay if she just lays in bed, but that leads to a host of other problems, so we decided that we should do something. We left home on an ambulance about 3, and they are still getting her settled in here.

She's got a morphine PCA, which allows her to give herself a dose by pushing a button, and a foley catheter.

We're in the palliative care wing of the oncology ward. I think all the rooms on this end are singles, and they try to keep this area much quieter -- there are reminders to close the door, to try to be quiet, and to feel free to complain if you think other people are being too loud.

Dr. C thought he might be able to move the bone scan up from Wed to tomorrow, but we'll see what happens. In the meantime, dp is comfortable enough, but we're still waiting for the Thicken powder so she can drink some real water.

We spent most of the weekend reading Harry Potter and the Prisoner of Azkaban. We're almost done with that, so now I just have to remember where we stashed the rest of them. I do think the weekend at home was good for her -- she sleeps a lot better in her own bed than she does in any hospital room, so while she is pained, she also well-rested.

Marie seems quite chipper -- she's worried about dp, of course, but looking happy and healthy when I check in on her.

Back in the UIHC

I got a call from St. Luke's about 3 -- they think dp's cognitive skills have been going down, so they called UIHC, talked to the (a?) neurosurgeon, and then called me to say they the neurosurgeon wanted her back.

At present, I'm sitting in the ER waiting room, waiting for dp's ambulance. I'm thinking/hoping that it's probably hydrocephalus, which should be repairable with a magnet -- adjust her shunt valve, and that's that... I hope.

St. Luke's has officially discharged her, I guess -- the nurse said they had packed up all her stuff and sent it along on the ambulance.

Time passes...

Sitting in the ER now -- we've been here for a couple hours, while they took labs and x-rays. The neurologist on call says that they don't see anything wrong with her shunt. He's thinking possibly the UTI and/or some of the meds she's on could have been messing with her.

dp was surprised to hear that St. Luke's was worried about her cognitive skills -- they didn't talk to her at all, until they told her they were loading her up on the ambulance. She was a little disoriented about the time of day, but seemed otherwise on top of things.

More time passes...

Here we are, back on 6JCW. The food is better here than UIHC, so dp's chowing down on fish, cheese sticks, a chocolate shake and a banana. They've stopped the new muscle relaxant (skelaxin) St. Luke's gave her, as well as one of the anti-emetics we've been doing for quite a while, and maybe a couple of others. He tripled the antibiotic to go after the UTI. They'll monitor for a couple days, and we'll see what happens next.

There is an advantage to being VRE-colonized -- we get a single room, which is way better than the double (Not any more plush, just quieter).

Another Sunday at St. Lukes

As usual, we're playing a game of 'two steps forward, one step back.' Thursday, dp showed a fever in the morning. Tylenol knocked it right down, so they really didn't get around to diagnosing the UTI (that's Urinary Tract Infection, for those of you who don't hang around hospitals or Marie) until yesterday. She's on antibiotics for that. This morning, she was pretty sleepy and some of the numbness was back in her right side, so we went downstairs for a head CT. I haven't heard back on that yet, but I imagine I'll hear something before I'm ready to post this.

Yesterday, Sam and JR came over, and we spent a couple hours cleaning, dusting and vacuuming the downstairs. It looks much better now, although we did transfer a few piles to the dining room and the garage. Still, it's definite progress, and a good time was had by all.

Marie seemed in good spirits this morning. Janet is planning on making ham and sweet potatoes, so they'll have a pretty traditional meal. Lauren is going to take over as her primary doctor, so I can just talk to her doctor again, instead of talking to her RN, who talks to the NP, who talks to the MD.

Okay, they say the CT didn't show anything abnormal, but she does seem to be showing some of the hyrocephalus symptoms -- there's some right side numbness, and she's seeing double again. I guess we'll take it up with Dr. D tomorrow...

A Happy First-Sunday-After-The-First-Full-Moon-After-The-Vernal-Equinox to you all.

Moving Along

Marie's cultures came back -- she's got three different bacteria colonizing, and two of them are treatable with the Cipro they're using. We'll keep an eye on the third one, and see what happens. Apparently, she'll always be 'colonized,' so the trick is keep the numbers down to a level her immune system can handle. I don't understand this as well as I should, but I'm sure we'll learn more.

Marie's doctor sent down word that the foley catheter can make matters worse, but we don't like the option of straight-cathing her four times a day either. We talked to the nurse, who talked to the doctor, and they're referring us to urology to re-open the issue of a supra-pubic catheter. It means surgery to put it there, but weighing that against the ongoing issues of the other catheters, we think it makes sense. The nurse thought it was a great idea, so we'll see what the urologists say.

dp continues to work her butt off at St. Lukes. She's pretty sore, but we think that's all from muscles that had gotten used to not doing much. She's still on thick liquids, but they moved her off pureed foods today. Her meat loaf probably looked pretty much the same, but the green beans actually looked like green beans. She has an official discharge date of 3/28, so I guess I've got that long to get the downstairs cleaned up...

Trooley is allowed up in the room, so I've been bringing him up for a short visit each day. The first day had him pretty freaked, but by today (his fourth visit), he seems to be getting the hang of the place. He sitting at my feet next to dp's bed as I write this.

So Far, So Good...

..that's what dp said when I asked her how the first morning went. According to her schedule, I missed ADL (activities of daily living -- aka 'getting dressed'), Rec, occupational therapy and physical therapy. I got here in time to watch speech therapy, more occupational therapy, and more physical therapy. By the time that was done, dp was pooped, and she's napping now while we wait for the food trays.

Food is kind of a pain right now -- she still on thick liquids and pureed foods. The Speech therapist kept saying 'very good' when dp did all of her tests, but marked her down as requiring 'supervised eating' along with the 'thick liquids' and 'pureed foods.' She also requires them to grind up her pills, which we spent the better part of the weekend getting them to stop. Personally, I think she resents the pun dp ran over her head, to the amusement of the student trainee and myself.

Everybody seems pretty pleased with dp's baseline. She walked again with a walker (75 feet at one crack -- the 140 last week was done in three installments), did four stairs this morning, and stood alone to practice balance.


The occupational therapist told her that her left hand is stronger than her right hand. In the next session, the physical therapist told her that her right leg is stronger than her left leg. Go figure... She does have a tendency to lean to the left, and her right eye is droopier than the other.

Meanwhile, the blog was year old yesterday. With this post, I've posted more in March than in January and February combined. I'm not sure what that means, but I'll note it for your collective interpretation. With any luck, we'll make blogging part of dp's activities of daily living, and then it'll be blog therapy...

dp says: "The rooms are nice. Wish you were here!"

The New Digs

I got back to the U a little before 9 this morning. We waited for bloodwork and miscellaneous paperwork, and then I loaded dp into the Baja, and we headed north.

Met the charge nurse, the doctor (Dr. D - we haven't had one of those, right?), a physical therapist and an occupational therapist. I'm not sure why the U did the superbug test, because St. Luke's ordered their own, and we're tentatively quarantined until they return. That means there's a big bag of infection control gowns hanging on her room, and staff is supposed to don those before entering the room.

The physical therapist did some basic assesement -- testing for sensation, strength and balance, and everybody asked what our goals were. We got Diana into bed about 2:30, I think, and she was sawing logs 10 minutes later.

The room is pretty nice -- this whole floor was just remodeled last summer, so everything is pretty new. It's a single room, mostly basic hospital issue. The remote that has the call light and the TV controls also controls the room lights and the curtain, so Diana has a little more control over her environment. There's a not-too-large dining room a couple doors over, and a big honking gym, complete with a mockup kitchen, mockup porch, mockup grocery store and a real car, so you can practice getting into and out of it.

There is a phone -- it's long distance from CR to IC, but tomorrow, I'll bring her cell, so we can talk as much as we want.

They make it sound like the program is pretty intensive -- physical therapy, occupational therapy, and speech therapy morning and afternoon, but Saturday afternoons and Sunday are pretty quiet. Visitors are welcome to hang out and observe therapy sessions during the day, but if you want to come and chat, it sounds like you should wait for evenings and weekends.

Take care, and beware the ideas of March... ;)

The Next Next Step

Okay, 9 am tomorrow, we're outta here, and headed to Cedar Rapids (somewhat-affectionately known as 'The City of Five Smells') for some 'acute rehabilitation.' More on that as it develops.

We did the meeting with the social worker this morning, and an assessment/sales pitch with a St. Luke's woman this afternoon. Dede came over to give a massage at 1, and the PT came back around 3 to work her out (another 120-140 feet with a walker). For some reason, she's tired tonight...

We didn't do the cookie swallow test -- they decided that St Luke's would rather do that themselves. They did take two cultures for 'superbug' infections (St Luke's requires them), and apparently dp passed those tests.

Marie seemed quite chipper today, and everything at da Red House was back to normal this afternoon.

Mother and Child Reunion

Okay, fine, nobody's worried about the missing urine. The conclusion on Marie is that she just has a urinary tract infection, so they're giving her a new antibiotic and sending her home.

First, though, they brought her up to sixth floor to visit Diana. They hung out bed to bed for about a half hour, and Marie and Connie left a few minutes ago.

Diana thanked Marie for coming, but suggested next time, she should just take the SEATS bus...

Thursday on the 6th floor

Shortly after I posted last night, the night nurse agreed that Diana was sleeping a lot more soundly than she had been the previous night, so she talked to a doctor, and we made the trip down to the third floor for a CT, just to make sure. dp slept through all the preparations (unhooking all of her leads from the room monitor and connecting her to a portable monitor, and 'hep-locking' her IV. Just as we were getting ready to pull the bed out of the room, she woke up, chipper and coherent. We did the CT anyway, but she was clearly on top of it.

I got in this morning in time to meet the physical therapist, who did a basic assessment of dp's abilities. Her strength is good, but her balance keeps pulling her to the left. She walked about 70 feet with two of us helping her to keep her balance (but no other assistance) and then 40 more with a walker.

This therapist is also recommending pretty strongly that we go for residential rehab in CR. She says that dp would get three hours of therapy a day, and that the whole program is set up to encourage her to do stuff for herself, as opposed to the hospital mentality (which I probably share somewhat) that the less she tries to do for herself, the less likely she is to hurt herself. We're still discussing it.

She's still on the thickened liquid (disphagia I) diet. We passed on the pureed seafood and pureed beefsteak, and opted for tomato soup, applesauce and pureed mac and cheese. The chocolate pudding was stock, and pretty tasty, according to dp. According to the social worker, the rehab people would teach her exercises to get her swallow back, too.

She still has an IV, but the leads and blood oxygen monitor came off just before lunch, after she finished her last bag of pottasium chloride. The plan is to spend most of the day her chair, sitting up for thirty minutes or so, and then reclining until she's rested. Right now, she dozing and listening to Barenaked Ladies on the iPod. Ah, domesticity...

Time passes, and yet he does not post.

Okay, it's 8pm now, and there's a new development. Marie is downstairs in the ER. Apparently, there's been no output from the catheter for two days now, and when the VNA nurse straight-cathed her, she got nothing. After I told dp, I went down to check on her (Connie came in with her), and she says she feels fine. The ER nurse was shrugging and saying they had flow, but they only got a little, so there's still a lot of liquid to be accounted for.

Somehow, we'll probably get mother and daughter to see one another, but that's the next task. For now, let's post the update.

It's Wednesday, right?

I went home last night about 10 (only took one shot of the good scotch, Sam), and came back in a little before 9, I think. All in all, dp is feeling pretty good (and well!) There is some soreness, but she's not taking anti-emetics, and she feels her right side neuropathy is better already. She was dozing when I came in, but woke up shortly after. I talked to one of the residents (he kinda sounds like Tim D), and the plan was to get her up and see what she could do. It was sounding at that point like they might let her go tomorrow.

The nurse noticed that she was having trouble swallowing (that actually started last week, I think), so a speech and swallow therapist came in about the time she had lunch, watched and felt her swallowing, and restricted her to a thickened diet. You can pretty much have anything you want, but it's either pureed or thickened to the same consistency. There's a swallow CT series (she said they call it the 'cookie test') scheduled now for Friday, so I guess we'll be here until then.

Trooley and I went home for a frisbee/supper break, and got back here a little after 7. She's been sleeping *hard* since I got here, but with some shaking, she woke up long enough to say she wasn't hungry, and to pass the nurse's is-your-brain-still-working tests. Her vitals look good, and the day nurse says that dp was seen by and spoke to one of the staff doctors shortly before I got here, so I guess we'll write it up to catching up.

It was one year ago today that we first heard the word 'cancer.' A weird holiday, I guess, but it does mark the start of a lot of changes in a lot of our lives, so it seems like it's worth mentioning. Happy Cancer Day.

6th Floor -- feels like home

Dr. R came up about 5:30, I think. Everything went as planned, and the big bump on the back of her head is gone already.

They took dp back down for another CT and chest x-ray to make sure the tube started and ended where it was supposed to, and then brought her back to 6JCEast, just one door down from where we got discharged.

Diana is still kind of out of it, but she looks and sounds a whole lot better than she did after the last surgery. With her scalp covered with betadyne and little magic marker lines, she kind of looks like Queequeg (I'm not telling -- if you don't know, look it up). She's already pretty alert, and we're looking through the 'clear liquid diet' menu (I'm guessing Italian ices again).

Anyway, so far, so good. Katie headed home when we heard that dp was out of surgery. I haven't looked at this trip's care package yet, but I did see a pineapple. (Katie mentioned that there was no rum..)

I'll blog again tomorrow morning.

dp says thanks to Katie and Seth.

Day of Surgery Lounge again...

We got here at 8:30, so somebody from neurology could glue the feducials (little lifesaver like things) onto dp's head. That turns a regular CT to a 'stealth' CT (they don't look all that stealthy to me, but what do I know?).

Anyway, Katie met us in the CT waiting room, and the CT was finished about 11. From there we went to the fifth floor -pre-surgery and waited there until about 1:30. A stop to meet the gas passer (an RN!), and they wheeled dp off about 2 for what's scheduled to be a two hour and 20 minute surgery. Katie and I went an got some lunch (the burger grill was closed, so we have to settle for salads), and now we're sitting back in the Day of Surgery Lounge.

Diana was in a pretty good mood -- any healthcare worker careless enough to just ask if she had any questions was queried about who would win the Democratic Presidential nomination. Pretty soon, they were just asking if she had any more questions in regards to today's surgery. She also got to tell the nurse anesthetist her 'why woman have no spatial perception' joke.

I think we'll be going back to the sixth floor neurosurgery ward after this, but I'll let you know when I hear more.

The Next Step

Got in to see Dr. R Friday morning. He agrees that the Diamox is not doing the trick, so we're now scheduled for surgery on Tuesday. Spent most of the rest of the day doing all the pre-surgery stuff, so we can go in outpatient on Tuesday morning. They'll do a head CT first, with the lifesavers glued to her head, and then we'll wait for the Dr. R to complete his first surgery of the day.

This will be a peritoneal shunt, which is a tube under the skin from the back of her head to her abdomen. It's two pretty small incisions (and another hole in the head), so the biggest trauma will be the general anesthetic. She'll probably be back on the sixth floor for two or three days after, and then back home again.

All in all, I think it's a good thing -- we've been kind of 'on hold' while we waited to see what the Diamox would do, and so something that offers genuine progress is kind of a relief.

Marie is weathering the winter just fine, and while she shares all our concern for dp, she is otherwise in pretty good spirits. Ambrosya has joined our family/staff/karass, and takes care of Marie in the mornings so Connie can continue her education.

Last Sunday, the tempurature made it into the fifties, so we got in the car, ran some errands, and went to Red Lobster for lunch. It was nice to enjoy the weather before everything froze again.

Stay warm.

Doctors...

Went to see Dr. C yesterday morning, and then Dr. A stopped by for a home visit.

Potassium is a little low, so there's a new pill, and we learned that the standard course of Lovenox is three months -- one more month to go.

Diana isn't getting any worse, but she's not really getting any better, either. I'm wanting to blame spinal fluid, because it's obviously still there, but in her own subtle way, Dr. A reminded us that we still have the kidney thing. Dr. C doesn't want to deal with that until Dr. R resolves the spinal fluid thing. Pushing him would probably bring up the surgical options, and Diana would really rather not do that if she doesn't have to.

The Diamox does seem to have some effect, but it also seems to be a short-term solution -- the right-side neuropathy improves within an hour of taking it, only to return eight to ten hours later. Meanwhile, I don't think the swelling around the incision site is going down. It's more like it's spreading.

Dr. R gets back to town on Monday -- that'll mark the three-week period we were going to try this for, so we'll see what happens then.

I didn't talk about the surgical options, did I? (reads back) Nope.

Basically, it's the age old art of trepanation. They'd drill a small burr hole on the left side of her scalp to relieve pressure there. The next (and I think simultaneous) procedure would be to use an endoscope (or whatever the brain surgery equivalent is) to make a small hole close to where the clogged drain is now (the third ventricle, rather than the fourth). If they can't do that, then there's a shunt that runs under the skin all the way from the skull to the abdomen. As brain surgeries go, it's a lot less invasive than what she's had already, but it's pretty easy to understand why we'd rather not go that route. (The phrase, 'like another hole in the head' comes to mind..)

We had yet another sleet-turned-snow storm last week, followed by single-digit temps. The City Streets division put out a press release that basically said, "It's snow over ice, it's too cold for salt to work, and we really don't have any salt left anyway. We're screwed." I thought that summed up the situation pretty well. We'll come into March with a foot of snow on the ground, but they say it'll be warmer.

The Day After President's Day

Not much new to report -- we're a week into the new drugs, and if they are working, they're working slowly. Some of the right-side numbness seems a little better, particularly for a couple hours after she takes the drugs. The swelling under the incision site (that's where the extra spinal fluid is going, Nancy) seemed like it got smaller early, but I'm not sure that it's stayed that way. I suspect that it's responsible for some of the swelling at the back of her neck, as well.

As Dede mentioned, the swelling at her temples is down, but I think that's because we're down to just 1mg of steroids a day. dp's blood pressure is back to normal, as is her appetite. We've got an appointment with Dr C (he called Sunday morning just to check in) next week, and with the neurosurgeon the week after that.

And yes, the weather still sucks -- we got another couple inches of slush Sunday, which then flash-froze to be covered with another couple inches of snow. Still, we're in the second half of February, so time is on our side...


Notes from dp:
Dennis: Judging from your schedule changes, we're assuming the current trip is off. Fortunately, our schedule is pretty open, so we'll probably be able to fit you in when you're able.

Packages should be on their way to New Mexico and Lacrosse. Let us know when they get there.

Regarding Marie: The plan A to keep her at home is the clear favorite, and we might be close to finding a new person to help out. Failing that, we're pretty sure we'd like to keep her in a nursing home here, rather than in Michigan.

Nancy: Kevin is injecting Lovenox in my thighs -- not my stomach. From the sounds of it, that's a better way to go...

AJ and Robyn's centurytel email addys are bouncing -- got new ones?

A New Read

Okey dokey, we know a lot more today than we knew yesterday...

As you may recall, when the tumor was discovered, one of the concerns was that the swelling was threatening to cut off the ventricle from which the cerebral spinal fluid drains back to the circulatory system. That's not really opened up as it should have, so spinal fluid has been backing up, kind of like a blocked stream -- it looks around for someplace else to go. It's filled the tumor cavity, the area between the brain and the skull, and through the dura at the incision site. That last is really a good thing -- it's given dp a built-in pressure valve.

When Dr. R showed us the post-surgery and recent MRIs of the incision side by side, it was like looking at aerial photos of New Orleans. Here's a dam, and then here's a broken dam with water collecting everywhere. I have no idea what Dr. S was looking at, but it apparently fluid is not his thing.

Anyway, the good news is they're not terribly concerned about it, and it's not all that uncommon with brain surgery. There are a couple levels of surgical fix, but first, we're going to try Diamox, a drug that's generally used to prevent altitude sickness by reducing the amount of spinal fluid the body produces. It's also a diuretic, and that part seems to be working already.

Good News, Revised

The issue in contention is the amount of fluid sitting where the tumor used to be. Dr. S thought there wasn't much, but Dr. C thinks there's enough there to be putting pressure on the brain and causing some of dp's right side weirdness and returning nausea. He called the neurosurgeon, and now we've got an appointment with him tomorrow morning. Dr. C called yesterday morning and said that the neurosurgeon didn't think that more surgery would be necessary. Googling suggests either bumping the steriods back up, or using an 'osmotic diuretic' like mannitol, but that's pretty speculative on my part -- google doesn't really cover post metastatic craniotomy edemas very specifically...

We've also learned we'll need new help for Marie. Connie, who has been Marie's primary caretaker is getting ready to take a new position, probably at the VA. If someone knows someone who can work split shifts and change adult diapers, give us a holler, okay? Failing that, we may need advice on nursing homes.

Here's some of dp's chemo caps (you'll probably have to click on the image to get the real effect.)

Note from dp: Cinda, thanks for the email with the large font.

Good News!

MRI today. We were both pretty nervous, because the right-side weirdness dp has been feeling could be indicative of another brain tumor. The scan shows perfectly clean though -- no sign of the original tumor coming back, nor of any other tumors starting. We'll do another MRI in three months, but Dr S was very happy.

Still, there's the right-side weirdness, and dp's been feeling more nausea for the last week or so. Metaclopromide fixes it pretty quickly, and she's doing more and sleeping less. Dr. S the radiologist wants to go from 2 mg a day to 1 mg, but we'll run that by Dr. C before we do it.

In other news, my Aunt Mary was buried today in Wisconsin. She found out that she had leukemia on Friday and she died of it on Saturday. I didn't know it could work that way.

We got about 10 inches of snow Tuesday/Wednesday. It's getting old, not to mention expensive to keep plowing, but gosh, it was beautiful.

dp asked me to say three things:
Nancy, the gloves got here.
Clan C, the tulips got here.
Mom and Dad, the low-fat divinity got here.

Some time later...

Yeah, I know -- we're not writing much. There's not a heckuva lot to write about, though. dp's days consist mostly of tv, knitting, and Games magazine puzzles, punctuated by eating, sleeping, and escorted trips to the bathroom. Three days a week, there's physical therapy, and Dede's here for massage two days a week. dp continues to make progress, but she's still weak, tired, and unsteady.

We went to see Dr. C for a follow-up this morning. He's fairly satisfied with the progress -- he says that dp looks better on paper than in person. Her various blood counts are all pretty much where they are supposed to be, and he cut the steroids down again today, with the target of stopping altogether in a week.

We took a bunch of pictures of dp's chemo caps -- I'll try and get something to show off together soon, but I don't think you want me to put this post off until I do that...

We put off the gyn-onc follow-up schedule for last week. As you may recall, the doctor there had said that he saw nothing in the ultrasound, and the follow-up was really just a precaution. Given that, both Drs. A and C agreed that we could probably put that one off until the weather is better and dp is stronger. Next Thursday, there's a brain MRI, so we'll see if anything has escaped the surgery and radiation. Barring any bad news there, Dr. C has tentatively scheduled a follow-up for the end of February.

We had a two-day break from winter -- Monday, it hit 50, I think. By this morning, though, it was 10 below. Still, January is almost over, and I'm looking forward to warmer weather already.

Mehndi Head

The woman who does Mehndi henna art came over today. With Dede watching on, she spent about three hours to do this. Pretty cool, huh?

Dr. C called yesterday morning (yep, Saturday) to check in. We've cut the steroids down to 4mg once a day now, and he confirmed my interpretation of the biopsy delay -- it makes no difference, because Diana isn't strong enough to do another surgery now anyway. It sounds like if it is cancer, they'll remove the kidney, but we'll worry about that later. He's a little concerned that Diana has been having some weird nerve things on her right side (temperature sensations, mostly), but says we'll just wait for the follow-up CT to see what's going on. That's scheduled for February 3.

This Friday, there's a follow-up ultrasound and gynecology exam from the not-tumor incident of last fall. I'm fully expecting that one to be negative, too.

Diana's getting a little more energy back, but she's still poops out pretty quickly. She took a real shower (in a chair) today for the first time since sometime in November. She's gotta bunch of cranium covers knitted up, and is working on more. She's also working on puzzles in Games magazine, and feels that is helping her exercise her brain. Mary the PT will be back tomorrow to exercise the rest of her...

The Ides of January (+3)

Up to now, there's been nothing much to report. Diana is spending most of her time sleeping -- less so this week than last. Her appetite is good, and we walk from the bed to the bathroom several times a day. Her PT has her doing work with weights. No news is good news, ya know?

Unfortunately, there's news.

I think I mentioned a spot on dp's left kidney when they looked at the CT. It was right at the bottom of the field, so they couldn't tell what it was, and we scheduled an ultrasound today.

The ultrasound tech took pictures for about 15 minutes. She said that "the Doctors" wanted to see the results before we left, and she left the room. Ten minutes later, another tech came in and she took pictures for ten minutes. Finally, a doctor came in, introduced himself, and did the ultrasound himself.
When I asked him what he thought it was, he said it might be a cyst that had hemorrhaged, but they'd have to look at the composite images. He was pretty careful to say nothing.

Dr. C called an hour or so later, and said we'll need to schedule a biopsy. I looked it up, and it appears to be done with a long needle, and takes an hour or so. Diana talked to him, and he didn't seem to be in a real hurry. The tumor is pretty small (5mm, I think) and he's not wanting to subject her to any more treatment until she's feeling stronger anyway.

There's supposed to be another major winter storm coming in tonight. A good time to hide out in da woods, I think.

Caucusing With Cancer

The last radiation treatment was Friday -- they gave Diana her positioning face mask (flower basket? bird feeder? avant-garde sculpture?) and a 'Certificate of Completion.' We'll talk to Dr. C next week, and start tapering the steriods down. Then two to six weeks of sleep and she'll be starting to get back to normal. The PT talked about trying stairs next week -- that's what we need to get back to our home.

We both did the caucus Thursday -- you can part a pretty good-sized crowd with a wheelchair and a loud voice. We were in the City High Auditorium -- never a very good place to caucus, particularly with a wheelchair and more particularly with a crowd twice the size of four years ago. Still, we found a more-or-less handicapped-accessible parking space and with the incredible assistance of a City High teacher who was caucusing in the cafeteria next door, we got a space down in the front with the Edwards people.

They used a different procedure this year -- rather than clumping in groups and counting bodies, everybody got a 'preference card' -- a three by five card with a sequential number. They determined the total turnout by the number of cards handed out (541), and then you 'cast your vote' by giving your preference card to your candidate's precinct captain -- the organized campaigns have a designated precinct captain there, and the Kucinich people elect somebody on the spot. The photo shows the precinct captains for each candidate (the woman on the left represents the undecideds), as they are each announcing how many preliminary preference cards they have and making their pitch to attract switchers.

To be viable, you had to have 15% of the available preference cards -- that was 82 in our precinct this year. (Four years ago, I think it was more like 40.) Since we were so close to the Edwards folks, we first learned that Edwards had 153 cards. There was a gasp from the crowd as the Hillary person (at the podium in the photo) announced that they only had 73 cards. Obama had 209, which caused another gasp. Richardson had fifty-something, I think, and nobody else was over 30. After 30 minutes of politicking, Hillary found enough to get viable, and the Richardson people finally gave up finding enough and moved to one of the other three. Obama got three delegates, Edwards got two and Hillary got one. They'll go to a County Caucus and do it all over again to figure delegates to send to the state level. We split as soon as the delegates were divvied up, but hardcores and the inexperienced probably spent another hour at least debating individual platform planks.

We live in the People's Republic of Johnson County, and our votes are generally nowhere near representative of the rest of the state. Hillary did better in the rest of the state, but we were closer to norm than usual.

The Obama people seem like they've got a pretty good organization -- they turned out a lot of new caucusers and they arrived ready to lead them. His campaign is ready to go toe to toe with Clinton. Speaking for all Iowa caucusers, you're welcome, the rest of the country. We did our part to make the nomination race interesting.