October 11, 2008

Gotta Keep Things In Perspective

IMG_3149

I liked this farm.  The man with the walker has lived there all his life---except for four years when he was away.  Owen LOVED the cows...he really didn't want to leave.  Leo thought it smelled worse than dirty underwear.

IMG_3152


Here's a Gina update on Judi:

Hello to all,
 
Most of you are aware by now that Judi's cancer has returned.  This was such devastating news, and the last two weeks have been very difficult on numerous fronts.  There are no further surgical options, and chemo is the only method available to help stave off this insidious disease.  Her oncologist has tried to put together the best chemo treatment available at this time including the use of one type that does not yet have FDA approval.  Her regimen for chemo is much like the last rounds--four days of chemo one week followed by two weeks off.
 
Since learning the cancer has returned, I would like to say her life has been like a roller coaster with a few dips and some strong gains.  If I'm truthful, it has been much more in sync with the stock market--a huge downward slide.  I'll try to explain for those of you not in close contact.  Judi is a fighter, so when chemo was offered, she quickly accepted.  She was told that the chemo treatment this time would be a piece of cake compared to the earlier rounds.  She was already not feeling well before the chemo was begun, so the idea that it would be easier was comforting--until the Monday night of her first treatment.  It made her ill.  Tuesday was a repeat.  Wednesday was a little better.  Thursday was the experimental chemo and wasn't too bad immediately.  During the weekend, however, she developed mouth sores as a side effect, and it hurt to eat.  She was already wiped out and definitely needs to eat, so this was a problem not to mention the continuing nausea.  When we went back to the oncologist on Tuesday, he was surprised to learn of the mouth sores so early in the treatment, so he put her on a prescription to alleviate those.  Her white blood cell count was also down, so she had to go in every day this past week for shots to help boost that.  The GOOD news in all of this is that the bloodwork on Tuesday showed that the chemo had "punched the cancer numbers down".
 
Today is Saturday.  She still feels wiped out but has been cheered by the visit of two friends from Greensboro, NC.  They will leave tomorrow, and a friend from Atlanta will arrive and stay until Tuesday.  Judi wants to sort through some books, and Liz will help her with that while she is here.  She will have her bloodwork done again Monday to see if the changes in some of her meds are helping.  Please send positive thoughts her way that she can regain some energy in order to better endure the next round of chemo starting a week from Monday.
 
Those of you who have ridden out this storm with her know that she absolutely adores the surgeon from Emory who did the Whipple procedure last October.  She already had a followup appointment scheduled with Dr. Kooby for Friday a week ago.  After four days of chemo that week, we headed to Emory so she could say her goodbyes to Dr. Kooby.  It was a happy, sad and amusing meeting!  Happy because Judi wanted to see him; sad because she got her last big bear hug from him; and amusing because these two exchanged professional articles that each had just written and submitted to their respective professional journals.  Now I'm not a betting person, but even I would bet that Dr. Kooby has never had another patient with whom he exchanged professional articles!  His was focused on pancreatic cancer in the half of the pancreas where Judi is affected.  Judi wrote an introspective article for the Journal of Therapeutic Recreation with a main title of "I Love Pumpkins" with a secondary title about the role of therapeutic recreation in oncology.  The main title came from the fact that about this time last year when she spent 12 days in the Emory University Hospital, friends from all over showered her with pumpkins--cards, gifts, etc.--with which we decorated her hospital room.  Anyway, she took a copy of this paper to Dr. Kooby who even asked her to sign it for him.  Then he started telling her about his article and said, "Wait a minute.  I want to get you a copy--I'm really proud of it."  I just leaned against the wall aware I was witnessing something on the surface that was mutual admiration of two people focused on helping others through their writings but underneath was a recognition that they had not been able to help each other to the extent they both wanted.
 
I will keep you posted from time to time as we see how things progress and how Judi handles the future chemo treatments.  She is thinking through many things right now and raising many questions in the process.  Answers will come in time.  For now what I can tell you for certain is that she is SO VERY appreciative of the cards, emails, flowers, gifts, phone calls, car rides, visits and so on.  As she grasps for answers to so many things at this time, she does not have to grasp for the answer of whether she is loved.  Thank you!
 
Gina

This puts my day in perspective of course because I have spent large amounts of it listening to whining and crying and downright tantrums.  Isn't 6 too old for that?  It's wearing me out.  I insisted we do something that I...yes ME....wanted to do and it ended up as less than a success.  Hopefully some of the pictures look o.k. as otherwise the day's pretty much a total loss.  Oh, and can we get rid of these FUCKING miniature black bugs swarming around me? 

Oh, and yeah.....we brought the van in to be fixed as it needs a couple of things done and Ernie takes it to Chicago next week and we'll be going to South Carolina next month.....

$2,400 later.....

Yup.  The same month we're in debt from our Kane Welch Kaplin party.  sigh.

Of course....as I said....gotta keep things in perspective....and the party was worth every penny of debt but geez....

IMG_3135

IMG_3154

IMG_3161

IMG_3167

IMG_3198

IMG_3206

Perspective, perspective, perspective.....

October 10, 2008

Random Notes from a Friggin Friday!

1.  Happy Birthday David Lee Roth!

2. L.O.U.S.Y. day at work yesterday....just one of those days you want to be OVER.  My mother called right before I left work and needed orange juice so I ran to the store and brought it over before I went home.  Got home grumpy and I think  poor Ernie had to make a real effort not to strangle me.   Got me a glass of wine, put a fire in the firepit, Dave brought me some cherry tomatoes and Ernie showed me the present a friend who was at our party dropped off.  It's the new Kate Campbell cd (out next week) with a lovely inscription from her on the inside.  I was so incredibly touched!  What a wonderful gift!!  So I eased out of my day and into my evening.  Made some curried oven fried chicken which is  one of my favorite comfort meals, a long with some lovely fres broccoli. 

IMG_3127

IMG_3125

3.  the  harvest from our serrano pepper plant:

IMG_3119 

4.  this is me being really bored while I wait for Ernie to drop the van off to be worked on:

IMG_3131

5.  Last night I told Owen that Aunt Judi will come and live with us sometime soon.  He got a worried look on his face and said "BOTH grandma and Aunt Judi?"  I had to laugh...it IS a lot to process.  I explained that Grandma probably won't move in for a little while and that Judi will have the other bedroom upstairs.  With that cleared up he got quite excited.  I told him he would have to help walk Wally (her dog) and he was thrilled.  Then he said, "oh wow, can we keep Wally when she dies?" and I was just struck quiet by his matter of fact question. God love children and their acceptance of things.  I explained that Wally had another dog friend that he would go live with and he sighed and said, "well, can we keep him three days?  I said maybe and kissed him and he gave me a big cheerful hug.

6.  I'm so glad this week is over.  I have a lot to catch up on this weekend---emails, phonecall, plans, etc. but I'm going to try to make it a good weekend for all of us.  Hope it's good for you too....

7.  Leo's official birthday picture:

IMG_3103


October 08, 2008

Random Notes from the Sandwich Life

The Millenium Falcon in process:

103_5970 

This has been a long week....and it's only Thursday.  I'm not quite sure why.  I've had some difficult evenings....tired from work and struggling to understand why this is happening to Judi.  Of course there's no way to understand it....it's just the randomness of life I guess but it is hard to come to terms with it.  She's trying to get things in place.....as soon as she decides she can't live alone any longer she will come here.  In some ways I'd like her to come tomorrow but I know how hard it will be for her to leave her house.  She loves her house and it's an amazing place.  The whole thing is hard on Ernie too.  The other night he went off on a rant about winning the lottery and taking her to the top cancer centers to see if they could do anything.  I just smiled at him sadly and kissed the tears in his eyes.

On a brighter note the boys have no school today and were floating on air all evening about it.  They had no homework yesterday and were beyond excited.  It's amazing to me what a big deal that is when they both do their homework in about 30 seconds.....  Oh, to have that big a weight only take up 30 seconds!!

Last night I sat in the yard by the fire for awhile but then ended up going inside, made a quick stew of white beans, leftover pesto roast pork and chard and then curled up by myself in the media room and happily watched tv while my mind hopped around.  Sometimes it's so nice to be alone.

October 07, 2008

Is it still Monday?....or Waiting for Judi....

Geesh what a day. Owen did one of his patented idon'twanttogotoschoolwhydowehavetogotoschooleverydaydon'tyellatmenobodygetsme  kind of tantrums this morning.  Then I called my mother to talk a little bit about Judi and found her all riled up, upset about her homecare worker and in tears about that and of course worried about Judy.  I got her calmed down but I gotta say...but geesh.   Anyway....had a good talk with Judi's friend Gina last night.  What I really want at this point is for Judi to come stay with us for awhile.  We have an office (more realistically a junk room) that we could turn into a room for her....I laid there in bed last night when I couldn't sleep from coughing and thought  about paint colors.  Judi sees her oncologist today.  Hopefully she can get some relief from some of the chemo side effects and get some straight answers.

Gina said Judi is worried about Ernie having to take her to chemo everyday, etc.  He has said he of course would be happy to do that but in addition we have friends that would help out, I know there are volunteers that help with that too.  We could make it work.  When things get  closer to the end I know she wants to be in an area where there is more of a Buddhist community for support....but who knows, maybe we could dig up some Tibetan Buddhists as well!

Anyway....that's my plan.  But of course you know how well my plans seem to go of late so we'll see.  So...Judi?  We're ready and waiting....

October 06, 2008

Monday

A very Monday kind of day.  I felt bleary for no good reason other than the remnants of my cold keep me up coughing at night.  I talked with Judi, yesterday and today, and things are not good. 

I wish I could DO more for her....not that I can solve anything but just to help....she has the inimitable Gina, to whom my family owes well.....just everything.  Jusi has open sores in her mouth from the chemo and doesn't know how much longer she can stay in her house alone.  I wish I could just be there, just BE there with her.  Fix her some food, put her to bed, sit on her deck.  I told her she can come here but I don't know what will be right for her.  Her realtor is coming over in the morning.

I have to admit that I am struggling.  I know that I will always have her with me but it is just too soon.  Just too soon.

I guess it would be easier if I didn't love her so much and well, if I didn't just LIKE her so much too. She's more than just a sister.

October 04, 2008

Hard things to say...

I think I slept 12 hours last night----I kid you not.  It feels like the first weekend in awhile that I could just relax...  Got up, had a bagel with peanut butter and some coffeemilk and talked to Judi.  She has started talking about end of life things....in some ways it's very hard and in some ways it almost makes it easier.  She saw her beloved surgeon, Dr. Kooby, in Atlanta yesterday.  I think it was very difficult.  They have a bond.

This morning we talked to the boys about Judi. It was very hard and of course I ended up crying through most of the conversation.  Owen gasped and said "oh noooooo" and Leo just kind of shrank within himself.  Then we had to talk about the different kinds of cancer and the fact that Daddy's kind of cancer is very different than Aunt Judi's.  The boys have had to deal with too much illness and death in their short little lives.

I talked to my mother and she sounded a little blue.  The boys and I talked and we decided to take her for a picnic to Allerton tomorrow and she perked up at having something to look forward to----we all need that. 

Too bad I didn't tuck myself into Kieran Kane's pocket last weekend....then I could be in San Francisco this weekend at Hardly Strictly Bluegrass this weekend watching my beloved Kane Welch Kaplin play....

Ah well.  I'll find something else to look forward to....

October 02, 2008

I don't know why my sister hates me....

My sister Debbie has done many a cruel thing to me since I've had children....she delights in toys that make obnoxious sounds and have no volume controls.  She gave Owen a drum set when he was 3 or 4.  She gloats every time she give Leo and Owen presents that are seemingly designed to drive a parent mad....

She has outdone herself however.....she gave Leo the Lego Millenium Falcon for his birthday yesterday.



OVER 5,000 pieces of frickin Lego....

This is what a small portion of my dining room floor looks like:

IMG_3052

sigh.

September 30, 2008

Random Notes from the Sandwich Life

1.  Ernie and I are almost like sad children the day after Christmas....except that the glow of the party is hanging on enough to keep us going.

2.  Today is Leo's LAST day of being 8....tomorrow is his birthday.  Do I have any birthday gifts yet?  Nope.  Do I have his party figured out yet?  Nope.  Is he HAVING a party?  I guess so.  HE seems to think so.  I don't think he'll go for the whole 'gee Kane Welch Kaplin was really for your birthday Leo" thing.  Oh well.

3.  One more dark video clip below.  They aren't as dark before I upload them to youtube...hmmmm.  Then my damn memory card filled up and I didn't even get one of my beloved Kieran Kane songs.  Gotta hunt down one of our guests that had a camera and see what he got....


4.  Owen is very proud of introducing the band the other night.  He told me that he thinks Kevin said that he did a great job 'because probably when grown ups do it they think it's a bigger deal than it is and they talk too long.'  I just stared at him and said, "Owen, please do not EVER tell me again that you are not smart because you are one of the smartest guys I know."

5.  Judi started chemo yesterday...didn't hear from her last night....I'm going to try to get hold of her today.  Please send her prayers and thoughts and songs and practices.....

6.  Tonight I actually do not have anything to do after work (other than buy Leo a birthday present) and I can't wait to sit outside in the yard with Ernie and watch the boys run around the field.  That is what is going to get me through this day.

September 24, 2008

oh

Well...Judi saw her doctor today and it was not great news.  We didn't expect GREAT news but just the same it was worse than expected.  If I understand her correctly, he does not expect her to go into remission again, albeit perhaps very shortly.  She will start chemo again on Monday and when it stops working then the expectancy would be something like three months.

It's funny.....I never expected to be without my sister.

You know....when Ernie was diagnosed in 2004 I was pretty devastated.  The boys were only two and four years old and I was terrified of losing Ernie. Although it was not at all rational I developed this picture in my mind....if I lost Ernie, the boys and I would move into the lower level of Judi's house.  I laid in bed figuring it all out.  Judi's sewing room off the guest bedroom would be the boys' room, we'd get a stove for the little kitchenette, my cupboard would go here, this would go there....I figured it all out.  Now mind you...this is totally crazy because if I somehow were to lose Ernie or he were to lose me, the other would stay right in this house with our boys and do fine...well, at least get by...you know what I mean.

Even though that whole plan was irrational it just shows how much of a support and a refuge Judi is for me.  I hope I can be the same for her. I'm here Judi.....and I love you.....

Random Notes from the Sandwich Life

1.  O.K....I've got a frigging cold. Can NOT believe it.  Oh well...hopefully I'll feel better by Saturday.  We're  moving into the pre-party state where you start crossing things off your list and saying, "oh, no way is THAT getting done."  Uhhhhh.....guess we're not painting our porch or our screen door....guess we're not reframing and framing some various pieces of artwork, etc.......

2.  This morning Owen demonstrated some dance moves learned in school.  Leo said, "Owen...that's RUSSIAN dancing."  I asked Leo if he did that and he looked at my in disbelief and said, "NO, of course not."  I can't help myself...he just makes me giggle.  I gave him a hug and told him he looked handsome and as he sweetly hugged me back he said, "I DON'T care."  That's my boy.

3.  Yesterday Owen said to a neighbor, "So who are you going to vote for president in the election?"  She said, "well Owen, we lean a little to the right" and he replied, "well, we're voting for Obama and we have a sign in our yard!"  She said, "I  saw that."  I don't know why that exchange amuses me so but it does.  If he keeps this up I'll have to explain that it's not polite to ask someone directly because for some people it's private.  He's so easily wounded and ready to think he's done something wrong though that I'll let it go for now.  That boy is amazing though...absolutely amazing.  You should see him with my Mom....double checking that her wheelchair is locked in place...one of his new worries is if the food we give her is o.k. for her teeth.  He is so caring that one....and funny...just damn funny....

4.  Judi goes to her oncologist for the official results of her biopsy this morning.  She's having a tough time.  Of course.

5.  We're still trying to track down a stand alone CD burner so we can record the show at our party.  Any ideas?


My Photo

Drive-in Theaters

  • Getting ready for the evening...
    My friend Eileen says that the reason I've been so obsessed with drive-in movie theaters is because my parents never took me to one as a kid. She's probably right. She usually is. Reportedly my older sisters went to the drive-in but I have no memory of it. The first time I remember going to the drive-in theater was with Eileen and I think it was the summer before college. I remember eating dried apricots and some kind of warm pop while watching a bad movie with a Cheap Trick song on the soundtrack..... My friend Alice and I were in grad school together in the late 80's outside Detroit. We ended up photographing drive-in movie theaters throughout the midwest as well as brief trips to various other spots. We always said we were going to write a book but we never did. I just dug out the slides I have though and man, there were some great drive-ins!!! It's been twenty years so of course many of these are gone I'd love to hear from anyone if they have drive-in anecdotes or know if any of these are still around. I took some of the photos, Alice took some---I'll do the Lennon/McCartney things and just list us both on all of them. She can always switch the order of names after I die.

Odds and Ends

  • wedding---October 1988
    Miscellaneous pictures....first up is a photographic history of my husband and me....as requested



  • best counter