Happy New Year!

We have received so many cards, calls, and messages over the last few weeks. Be certain: we feel the love.

We wish for a peaceful and happy 2012 for all of you.

so it goes

David has made the decision to stop treatment and go on hospice care. The treatments weren't really doing much in the way of making him feel better. In fact, the latest one required a 48-hour infusion time so for two days he had to wear a fanny pack with a pump in it. It was cumbersome and made sitting and sleeping uncomfortable. David isn't really doing a whole lot besides sitting and sleeping so you can imagine that this was not a fun weekend for him.

We met with his oncologist last Friday and she fully supported his decision. She will still be kept in the loop about David's progress but all of his care going forward is being managed by the Heartland Hospice team. His regular nurse will come to the house about once a week to check in, take his vitals and answer any questions. A social worker came out to meet us and is going to be helping me navigate the Medicaid application process. They have also taken over all of his prescriptions: not only do they deliver everything to the house but we don't have to pay copays any more! They offer just about anything you can think of including equipment, bereavement counselling, massage therapists, home health aides, volunteers and so on.

We both feel a not-so-small sense of relief. First, I'm glad that we were able to come to this decision in our own time. Second, there will be no more driving to appointments, blood draws, allergy testing, fanny packs or lunches at the U of M Hospital cafeteria. Our focus now is on staying warm, pain-free and comfortable.

David is sleeping a great deal of the time now which makes it less likely that he'll be up for phone calls or visitors but that doesn't mean you shouldn't try if you feel so inclined: please leave a comment or email if you've got something to say or give a call if you feel like talking or want to set up a visit.

Thanks for reading.

There's no place like it

David came home this afternoon. He and his doctors decided mid-morning that he was going to go home but it still took until almost 3 pm to get him discharged. No complaints, though. He received excellent care at the University of Michigan Hospital. In fact Joanne, the nurse he saw the most of, referred to herself as the Queen of Poop and she was really great. You just don't want to see her crown.

So, he's home but he's got a busy week ahead of him: there's a full DVR and two little dogs who missed out on a few days of snuggle time.

Thanks for all the well wishes and support. You'll hear from us again soon.

Here's what we've been doing

There is quite a bit to catch you up on so I'll jump right in:

Since our last post we've had some visitors starting with Kira and Matt. Kira is Darla's daughter and David has known her since she was a wee one. She and her friend Matt were in the process of hitchhiking from Portland, OR to New York City for the Occupy Wall Street protest. They stopped here for a hot shower, a good night's sleep and a big Bomber breakfast before thumbing it the rest of the way. They are still there, still protesting nad probably getting snowed on as I type this. Check out their blog (although I think they update less frequently the even we do!) Go, Kira and Matt!!!

Then my parents were here for a few days. Mom made us 2 apple pies and some stuffed shells for dinner. The took their usual trip to Ikea and we played about a million games of cribbage. It had been a year since they were here last so it was great to see them and spend time together.

The following weekend was the Purple Stride walk at the Detroit zoo. It was really something to see: there were thousands of people there walking and cheering. The event raised over $175,000 and Team Martini raised over $2,000 of that! David actually walked the entire 5k which made the day even more special. Plus, animals! Detroit has a really impressive zoo. In addition to usual assortment, they had peacocks wandering about freely and a pair of very frisky aardvarks. Here is Team Martini (with the exception of Liz who took the picture. Thanks, Liz!)

We are all sporting another Matt Sturm original t-shirt. Awesome!

In the few weeks since the zoo walk David has been feeling poorly: more and more tired, no appetite, another allergic reaction to the latest chemo drug, a birthday spent sleeping and feeling crappy. Then, early Thursday morning I took him to the ER with abdominal pain that no amount of drugs could touch. It took them some time to get his pain under control. Meanwhile, they did x-rays and an ultrasound and were initially afraid that he had a bowel obstruction. A CT scan on Thursday night showed no obstruction but he was severly constipated. He is still in the hospital and has had some improvement but not enough to come home. He just needs to poop, really. That's all. One good poop. there have been rumblings and considering the variety and amount of things they've been administering it shouldn't be much longer. Sorry for all the poop talk but if you have kids or dogs or saw Bridesmaids I'm sure this doesn't bother you.

He's feeling some better, his pain is under control and he has a private room so it could be worse. His mom, dad and sister Danielle are here and while they're not having quite the visit they were expecting, they are glad to be here for him. They've also been a big help with the dogs while I've been otherwise occupied.

So, that's what new with us. Sorry if I burried the lead by putting the big news at the end but I wanted to share some of the good stuff too. There's always good stuff. Thanks for reading. More soon.

shedding and other side effects

Hi everyone.  Been feeling very tired the past few weeks.  I think part of it might be a minor cold but I know some of it is due to the bad sleep I've been getting since being on the anti-depression (also anti-nausea) pills the psychiatrist prescribed.  The ironic thing about the drug is that it was supposed to help me sleep and indeed it makes me tired but it also makes me have weird dreams that end up leading to a crappy nights sleep.  I had an appointment with the shrink on Friday and we agreed I could/should stop taking it.

The other problem with sleep has to do with my inability to control my body temp.  I wake up several times in a night (or even during a nap) and I'm saturated with cold sweat.  As are the sheets and pillow cases.  For some reason, when I nap on the couch downstairs I do not have this problem (at least not nearly to this extent) so last night I decided to try sleeping on the couch and I was dry all night for the first time in a while.

On the opposite side of the body temperature issue is how cold I get when I stand up after having been sitting for any period of time (or when I get up from bed).  Within 15 seconds of getting up I am shivering like it's below freezing in the house.  My body does warm up after a minute or so of shivering so it's not a major issue but I do find it odd.

Finally, in side effects updates, I have begun to lose my hair.  My doctor had told me the new chemo drug would cause this but for some reason it didn't start until two weeks after the dose so I had kind of forgotten until yesterday I woke from a very damp nap and noticed tons of little hairs on the pillow.  If I brush my hand over the top of my head the hairs just fall like snowflakes.  I wonder how long it will take to fall out completely?  Just like finding out how many licks it takes to get to the center of a Tootsie Pop, I may never find out because I will probably shave it rather that deal with hairs falling down my back and being all itchy.

Now, after four paragraphs of complaints, I want to make sure you don't think I'm all down in the dumps because generally speaking I'm pretty content most days.  True I can't get around as well or even as much as I would like but we've got about a week of warm Autumn temps coming (and a break from the rain) and that typically inspires me to get out and at least go for a short walk or even bike ride.  Additionally, there's the big zoo walk next weekend.  Team Martini has really come together and generated more than $1200 in donations - and there's still time to give if you meant to but didn't quite get around to it.  Can't wait to see everyone who's coming out for the day and I'm excited to see the zoo, too. 

That's all for now - take care!

T-shirts for the Zoo walk

Hey all,

As mentioned before, there's a big group of peeps gathering on October 9 for the pancreatic cancer walk at the zoo.  There's still time to register to join us (or to just donate a few bucks): http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=482316&lis=1&kntae482316=BC95DCB9F3254B0FA104833331AE9338&team=4207404

Also, there will be Team Martini t-shirts (only $10/each !) that can be ordered through this site: http://www.surveymonkey.com/Home_Landing.aspx?sm=2GORKMLBcn49ZwDH%2btai2pnZaCJLZIBF9uH6gFYPaYE%3d

T-shirt design is top secret and shirts will be available for pick up at the walk.  Big thanks to Matt Sturm (again) for making them!

Thanks!

The Portland Years (part 2)

As I mentioned in the earlier Portland post, my first job in Portland was at Zell's, a funky little breakfast/lunch place.  There I met Kelly & Michael (among many other awesome peeps) and along with Michael's friend Ken and my friend Julie, we opened a restaurant.  We decided to call it Wild Abandon because (a) we wanted to change the menu every night so that when you arrived you were taking a chance on something new and (b) because we were certainly headed into something new and unknown ourselves!

None of us had a lot of money but together we scraped enough together to take over the tiny little space formerly occupied by the uber-successful Bistro Montage.  Having eaten there several times (it was a cheap place to eat and just a couple of blocks from my apartment) I was disgusted to see the conditions of the kitchen - see top photo for an example.

The middle picture shows the space in progress and the bottom show a working kitchen (pounds of grease scraped from the wall, all new equipment, etc.).

With minimal experience, we gutted almost the entire restaurant.  I even got a tool belt for the occasion:



Lots of hard work but that doesn't mean there wasn't time to snap some photos for the "Men of Wild Abandon" calendar.



Here's a shot of the dining room when we took it over:


Here it is again (from the opposite angle) after we were done with it:


For my part, I helped with all the front of the house aspects (from hiring and firing to waiting tables and hosting) and some back of the house.  Notably, I was in charge of desserts for a time and then, of course, there's always this:


Everyone took their turn washing dishes.

We met with some early successes.  Here are a couple of reviews:



In the end I spent just a couple of years with the organization.  It got very tiring working 70-80 hours per week with no end in site.  Obviously this is the kind of commitment needed for any new business but I was too young to be tied down so I bowed out.  It was a great experience and I met a very good friend through it (Hi, Darla!) and learned a lot.  Not just about running restaurants and managing people but also about myself.

If you're ever in Portland you can stop by; Wild Abandon is still a going concern and seems to be doing well and the food is as good as ever.  If you go, ask for Michael and tell him David sent you.

medical updates

Last weekend I had another CT scan and we got the results yesterday at my doctor appointment.  It seems the Xelodna (chemo pills) are not doing their intended job and the tumors did actually grow since the last scan. So, this coming Friday I start another new treatment.  This one is back to an infusion (luckily only an hour every three weeks) and then there's the big question:  How sick will this make me?  This regiment involves taking nausea-reducing steroids before, during and after the infusion so hopefully I won't be too sick.

Until Friday, at least, I should be feeling pretty good.  Fingers crossed that I will also feel OK post-treatment.

I also had a cold earlier this week.  Still a little congested (though not as bad as Dave) but feeling like it's mostly passed. 

Hope you are all well!

The time I met David Taffner

I was never one to keep track of how many sorts I did but suffice it say, I did a lot of them in the several years I was a trainer and then as Retail Coordinator (later Sort & Remodel Manager).  Most were pretty good projects though many were several steps beyond "challenging".  In the summer of 2003 I went to Kansas City to open a new Borders on the north side of town - one of the less challenging openings in which I played a part.  In addition to the trainer group (an overall set of awesome people) that I was supervising I was also tasked with training four interim SRMs (with lots of help from Dee Ellis!).

Of the four interims, I only knew one going in (hey there, Yasuaki!) but Marla had worked with one of the other three when he was a trainer on one of her sorts.  She predicted we would get along just fine. 

That one trainer was, of course, the one and only David Taffner.  Do you believe in love at first site?  I do.

Here's what he looked like back then:


Pretty handsome, huh?

A good sort has many things that make it good:  great staff, great managers, great trainer group, good construction conditions, deliveries arrive as scheduled (etc.).  We had most of that going on in KC so when I say it was a good sort it has more to do with just meeting the love of my life.  The trainers and interims (and me) bonded pretty quickly (with one exception; can't win 'em all, I guess) and had lots of fun outside of work.  For instance, we taught Lynda Lawrie how to drink martinis:

Step one, clink glasses and say a toast.Step two, sip and...aahhhhh.

That's us with Lynda and Ed Krien (already an established martini lover, he).  Ignore the glasses, I was pretending to be emo (but not Phillips).

And we went to World of Fun, or something to that effect and rode lots of rides.  Here's me with Lynda and Dee getting strapped into a crazy harness so we can go flying through the air:



Dave and I rode the ride that I call The Enterprise because that's what they called it at Valley Fair where I grew up.  It's basically a super fast, psychotic Ferris wheel where you spin upside down.

This is one of my favorite pic of us.

Nearly all of the trainers and interim sort managers (and even our TNC, Jenny Weed) bought some Chucks.  It was almost cult-like.

After the sort, Dave and spent about a year living apart, he in Providence, me traveling while based in Austin, though our paths crossed a few times that summer and fall (Hello Louisville, Keene and New York) while on official Borders' projects and also during some down time; we went to see Belle & Sebastian in NYC as well as Boston and I spent Thanksgiving in Rhode Island.

During that time we spoke every day except for one (no big story we just didn't connect that day) and naturally talked about the future.  We were both ready to make a sacrifice to be with the other.  If necessary, I would move to Rhode Island, even though my career options would be more limited.  He was ready to move to Austin if it turned out I had to stay.  In the end we both moved to Michigan because I had an opportunity to get off the road but still be a part of Store Planning and he had several options for stores in which to work or even a home office gig (as long as it wasn't my department!).

So we moved to Michigan.  We spent about a year in a rental before buying our current abode which we really love.  Which brings us to now. 

Borders may be gone but friendships survive and my relationship with Dave has never been stronger.

We do not celebrate an anniversary, in fact most of the time when people ask us how long we've been together we have to stop and think about it.  We just live our lives and the anniversaries come and go like all the other calendar dates.  Sometimes in July it will occur to me that we're at that time of year again and I might mention something to Dave if he's around when the thought comes into my head.  Or I forget entirely, which is what Dave also usually does and is one of the reasons why we are so compatible.  Not that we take each other for granted it's just that...well, we're on the same apathetic wavelength in this matter.

PurpleStride Detroit 2011 - can you donate?

Hi everyone! 

Next month the Detroit Zoo is hosting a walk to benefit the Pancreatic Cancer Action Network and once again, Team Martini is poised to make its presence known!  If you are able to join us on October 9th you can register through this web site which should take you to the Team Martini page:

http://www.kintera.org/faf/search/searchTeamPart.asp?ievent=482316&lis=1&kntae482316=DB5AD7D9DAF447D6A3C0045DD462AFE5&team=4207404

You can also donate through the above link as well.  It should be a really fun time and rumor has it that there will be new t-shirts.

Thanks for your support!

Quick Update

Hi all,

I've started a new drug this week that is making me very sleepy.  While we're waiting to see if I acclimate or if we need to pull back on the dosage I might not be posting as much as I have in the recent past.  Trust me there's more to come!

All in all I do feel better though.  The combination of a lower dose of chemo pills and a higher dose of the nausea drug Zofran seems to be keeping the once daily nausea at bay.

If only I wasn't so sleepy...

The Portland Years (part 1)

When I was in my early twenties, I had an epiphany whilst shoveling snow:  I don't have to live in Minnesota where it snows 6 months of the year.  I eventually came to realize that this was wanderlust as much as anything;  I need to live somewhere new and experience something new.  I first looked to the East coast cities (New York, Boston, etc.) but thought better about it when I researched cost of living.  Also, still have to deal with snow. Changing my sites to the West coast, I identified Seattle as my choice of new cities (this was, after all, right as grunge was starting to break).  As fate would have it, our friend and co-worker from the Dakota, Maureen, had decided to move back to the Pacific Northwest where she had been raised.  She had settled in Portland and in the summer of '92 I took a road trip with three friends (well, two friends and one "other" - the story of the trip could be its own blog post) to visit her and use the opportunity to hop up to Seattle for some research.

We ended up having a really great visit and saw so much of Portland and the surrounding areas that even though I really liked Seattle when we visited, I felt at home in Portland.  I spent a year working my butt off (I took every shift I could including lots of catering work on the side) and in the early summer of '93, Kristina and I moved to Portland.

First priorities were to find a job and to find a place to live.  Since I had a good amount saved I focused on the apartment search*.  We wanted something that was in Southeast Portland (which is where Maureen lived) because we liked the funky flavor and there were cool places available for pretty cheap.  What we ended up with was so awesome I ended up staying for four years.  It was right above a record store (I had always wanted to live above a shop front, it seemed so urban) and right in the heart of SE.  Some people expressed concern about the neighborhood but whatever the rep it had before we moved there, it felt safe when we were there.

Anyway, the place was huge with tons of windows and beautiful, just re-done, wood floors.  Here are a few snaps:

The main living area. 
The adjacent dining room.

Awesome back deck (Hi, Donna!).


Kristina and I lived there on our own for the first few months before I met Ned.  We dated for a couple of years and he moved in shortly after we met.  She stayed for a year and when she left, much to my chagrin, we needed to find a third roomie because Ned, being a student, couldn't afford half the rent.  So we found Mike which was a really lucky break.  Mike was a friend of a friend and was moving to Portland from Las Vegas.

We had a great place for parties and we had people over all the time.  And in all the years I lived there there rent only went up by $75.  When I moved in it was all of $550 per month. 

Built in buffet dressed for Autumn brunch.

The friends gather.  I can only name half the people shown here.  And I'm one of them!

Only know one of three here (Hi, Amy D!).

Eventually I found a job waiting tables (my experience at The Dakota turned out to be helpful as the assistant manager was from the Twin Cities and knew that if I worked there I could certainly sling hash - he literally pulled my resume from the trash heap) at a breakfast and lunch place called Zell's.  While the food there was great for what it was, and I made plenty of cash to get by, it was the connections I made that turned out to be the true benefit.  Along with two of my co-workers, I helped create and open a new restaurant called Wild Abandon.  That, however, is a blog post for another time.


*As an aside, related to finding a job, I feel so lucky to have been young at a time when the country was doing well and was full of optimism (we had Bill Clinton!).  There's no way I would consider moving halfway across the country without a job waiting for me in the new city in this day and age, but back then?  It didn't seem like a problem to hop in the car and go.  And, naturally, we found jobs almost as soon as we started looking.

early training for being an SRM?

Here are a couple of things I came across whilst pawing through my boxes of junk.  In retrospect, I think these courses were probably very helpful in my job as a Sort & Remodel Manager.  Actually, there are a few jobs where this might be true...

still feeling pretty good!

Hello - I hope you've been enjoying the posts I've been putting up.  As I mentioned before, it's been very fun for me so expect more.  :)

As for today, just a quick little update to let everyone know that I'm still feeling pretty good and since I restarted the chemo pills on Friday, by now I would be nauseous if the new routine wasn't working.  So, hooray for that!

The weather has been very mild lately and I've been trying to get a bike ride in every morning as well as taking the dogs for extended walks.  Some exercise, not too much - I do still get tired pretty easily.

The milder weather has meant that the tomatoes are ripening more slowly but we still have lots on the vines and so will have plenty of toms soon.  The rest of the garden is doing well, especially the rogue pumpkin plant that sprang from the compost bin.  Since it's getting the best possible nutrients it's gotten out of control.  It's managed to not only climb the chain link fence but also the old rusted out laundry post in the neighbor's yard and there are actually pumpkins growing from the vines.  There are two in this photo but one is obscured by leaves:



And then of course, there are the pumpkins growing on the ground.  We already have a couple that are ripe and there are LOTS more to go.  Too bad they will probably be too far gone by Halloween.  Does anyone know if we can store them once they're cut from the vine?  Obviously they last a while, but how long?



More soon - hope you are all well.

Was I really so young?

My first job with an actual paycheck (ie: not babysitting) was at Arnold's Hamburger Grill.  It was a knock-off of the Happy Days hangout and I was a malt maker.  On the weekends there were three of us scooping and blending ice cream but most nights it was just me.  After a few months I was "promoted" to fry cook (onion rings, french fries and chicken tenders) and about nine months after I started I got a job with Schmitt Music at the local mall and (temporarily) abandoned my burgeoning restaurant career.

For a high school job, it was pretty cool.  We didn't sell records and tapes but rather musical instruments and accessories and while I knew a lot going in (years of piano, violin and bass lessons will do that) I realized quickly I had a long way to go before I could be trusted to work the counter alone.

We had to wear name tags, of course, but we also had to wear these giant, garish buttons to promote group guitar lessons (it was a really good deal actually).  This fashion faux-pas was mitigated  by the fact that I also got my own business cards.  Of course, I don't think I ever gave any out since we weren't on commission.


One of the great aspects of the job was that I got to work with friends from high school.  One of them was Kristina (she of the Sandra adventure in the previous post) and another was Traci.  We worked hard when it was busy but we also had quite a bit of downtime.  Summertime in the mall was pretty slow traffic-wise so we played around with the various instruments (lots of squeaks and squats when I picked up a wind instrument) and generally screwed around.

(Traci and me)

Check out my attempt at a new wave 'do.

One of things that used to crack us up was an early version of what is now known as "Sleeve Face".  This is where people hold up album covers and "be" the cover.  Here's a web site devoted to it: http://www.sleeveface.com/

As I mentioned, we didn't sell albums but we did sell sheet music which generally had the same cover art as the records.  When the Sleeve Face book was published, we snagged a free copy from work and while flipping through it I had deja-vu that caused me to rummage through old photo albums.  Here's the image from the book (and presumablely the web site):


and here's the photo it reminded me of:


This photo was snapped more than 20 years ago meaning we were WAY ahead of the trend.  Well, mini-trend.  :)

This job was so long ago (I was a teenager for crying out loud!) that it seems like a dream.  A very nice dream, to be sure!

The time I met Sandra Bernhard

Back in the early 90's, I was a huge Sandra Bernhard fan.  I had seen her one woman show Without You, I'm Nothing (the movie version of the stage show) and played the cassette version almost constantly.  I almost literally had the whole thing memorized.  Most of my friends shared this passion and when we found out she was coming to town with her new show, Giving Till It Hurts, we bought tickets immediately.




As we waited for the show date to come around, my then-BFF Kristina and I started to wonder how we could meet her when she came to town.  As we both had restaurant experience (she in the back of house, me in front) we thought about putting in a bid to cater the show.  The hitch?  Neither of us had any experience with "putting in a bid"; we knew what it meant but were unsure how to actually do it in a way that didn't make us look look like lunatics.  We knew we could pull off the catering part but since we didn't even have a business (you know, with like actual letterhead and such) we figured we would appear to be just what we were:  fans looking to meet SB.

As fate would have it, we were discussing this at work one night and our boss, Lowell - the owner of the Dakota, overheard us.
"What's this you're trying to do?" 
"Cater Sandra Bernhard's show at the Guthrie Theater."
"I have known Sue (who booked acts for the Guthrie) for more than 20 years, would you like me to call on your behalf?"
"Um, yes.  I mean YES! YES! YES!"

The next day, he gave her a call and despite her (correctly placed) concerns, she agreed to let us do it based on just Lowell's reference.  She probably would have been less suspicious if we hadn't offered to do the job for just the cost of goods but we were desperate and it seemed like the best way to make sure our bid was lowest.

Cut to the night of the show.  We arrive with plenty of time to set up and get the backstage area ready.  As show time approaches we're getting nervous.  Sandra goes on in about a half hour from now - she won't have time to eat.  Will she?  With our excitement turning to disappointment, we tried to find something to get happy about.  Maybe she'll come by after the show?  Maybe we'll get to glimpse her as she heads out the stage door and into her waiting town car?

With show time rapidly approaching we were just about to give up and head out to our seats when - ta-da! - there she is!  In the middle of hair and make up, she and her assistant and band came down to get a bite before the show.  Success!  Everyone is thrilled with the food (most venues will fulfill the requirements of the contract but only just barely) because we, naturally, had pulled out all the stops and went way, WAY above and beyond.  The big bonus?  Sandra was very nice!  She was super chatty and happily posed for pictures even though she was wearing big rollers in her hair.



Pre-show meal complete, we head out to our seats (as she was leaving, Sandra turned and said, "Do you guys need tickets for the show?" which we thought was super cool).  As I mentioned earlier, we bought tickets with a group of friends.  As we took our seats the friends were very concerned, "Where have you been?  The show could have started any time!") but we were able to brush them off with a simple, "Oh no, we were just back stage with Sandra and she's just finishing getting ready and should be out soon.  The best part?  We had Polaroids to show everyone!  Oh yes, we were very cool people that night!

There are several other bits to the story that were memorable (e.g. having to track down some pot "for the band") but the best footnote has to do with Remy Martin (with a water back, godammit!") a very lovely cognac that is featured prominently in her first show, Without You, I'm Nothing.  We had no idea if she really liked Remy or if it was just part of the act but it turns out she really does love it.  For her encore she reached back and did the Remy Martin bit - with the bottle of Remy (and brandy snifters) that we brought.  We feel we can honestly say that the Minneapolis crowd would not have been treated to such a thing had we not thought to bring (mostly as a joke) the bottle of Remy.  After the show (we did get to see her then, as well) we told her we weren't sure if she really liked the stuff or not, to which she replied (in a fake, drunken slur), "I love my Remy Martin!"  She left with the bottle but left the snifters behind.  I still have the one she used, I even left it unwashed for years because there was a lipstick stain.  :)

Good news from the doctor

I had my appointment with the doctor yesterday and we agreed upon a variation of the previous routine.  The chemo dose is reduced by 25% (only three pills twice per day as opposed to four) and the dosage of zofran, for nausea, will be doubled.  Hopefully this will alleviate some of the extreme nausea and I won't have to spend the next two weeks on the couch again. 

The good news is that the pills are working and the tumors don't seem to be growing.  Let's hope the smaller dose continues to work.

In other news, I have been scanning some other memorabilia to post.  It's been fun for me, I hope you, dear readers, also find it at least interesting.  If not, oh well.  Like I said, it's fun for me.  :)

Portrait of the reader as a young boy

Some more stuff from the time capsules.  My mom gave me a box of things she had saved from quite a while ago.  Some of it is so old I have no recollection at all; my first library card (pictured below) from when we lived in Rochester, MN is the perfect example.  I know my mom and I lived there briefly when I was a baby and I know I had her maiden name at the time but I do not have actual memories that go that far back.  (My memory barely extends to yesterday sometimes.)

The MS READ-a-thon was something we did during the summer.  I remember having to get people to sponsor me (maybe a nickle per book read or something?) and I know I did it more than two years.  I either lost or failed to get my other certificates.  Or maybe I didn't complete my missions?  It's hard to be Mystery Sleuth, you know.  One thing I do remember from this period is frequently riding my bike up to the strip mall (about 1 mile away) that had our local library branch.  I loved it there even if, in retrospect, it was pretty crappy, small and dimly lit.  Always left with a good sized stack for the week.

As I mentioned above, the library card was from a time before my mom got married and we had her family name.  So no, that's not the world's craziest deviation from Sholl but it is actually spelled wrong.  Bonus points if you can figure out how "Przylilla" should really be spelled.

Finally - feeling good!

Greetings!  I'm writing this in the midst of my chemo "off-week" and am feeling pretty good!  I've actually had a several good days in a row and have been enjoying every possible minute knowing that it all goes south once I'm back on.  I see the doctor on Friday and am hopeful that we can switch up the current chemo cycle enough so that it isn't quite so terrible.  More on that later, in a different post.

While I have been trying to get out and get some exercise (light bike riding, walking the dogs) I'm not supposed to spend much time in the sun because of one of the meds I'm taking so I have also tackled a few indoor projects.  My closet is finally back to thinned out and organized and now I am sifting through boxes of memorabilia trying to organize piles based on who I think might get a kick out of receiving some of my old crap.  I'm talking about ticket stubs for a show we may have seen together, not my old binkie or something.

From the collection:

A drawing of my mother, I must have been about 7 or 8 years old.  The information in the bottom corner is as follows:
Age: 29
Weight: 109
Favorite Food:  Chow Mein (!?)



A selection of concert ticket stubs.  Guess who saw Culture Club in 1984?  I had to beg (it was a school night after all) but it was AWESOME!

Clockwise from the top:
Culture Club
Kronos Quartet
Squeeze
Paul Young w/ Wang Chung
Paul Weller
Morrissey
Howard Jones
The Cure

Good times!

Ok, back to cleaning up and such.  Just wanted to say hello and let everyone know I was feeling good for a change of pace.  Hope you are the same!

More of the same

Hi there.  The last two weeks have been pretty rough for me.  I usually wake up to a wave of nausea that comes out of nowhere.  It passes pretty quickly (15-20 minutes) but leaves me exhausted and feeling ill.  This has meant that most days are spent on the couch watching TV and snuggling with the dogs (which is pretty good medicine).  Typically I start to feel better (not good, just better) around the middle of the afternoon and with the help of a different kind of medicine entirely, I am usually able to finally eat something.  Never let anyone tell you that marijuana isn't a helpful drug.  I would be down to 100 pounds if it wasn't for the appetite stimulation.  Today, however, is a good day so far - no pukes or even dry heaves.  If you'll recall, I am currently on the "two week on/one week off" chemo cycle (with the eight pills per day) and this week is an off week so I'm pretty sure that's why I am feeling so much better.  I have a doctor appointment on Friday where hopefully I can be prescribed a stronger anti-nausea pill.  (The smoking helps nausea, too but I also have Zofran that I take every eight hours and Compazine for any breakthrough illness.)

Speaking of TV, I have been watching quite a lot and it sort of surprises me how much lower my standards have gotten.  Instead of feeling as though I should spend my limited time watching classic movies and reading all those books I have stacked up, I am more content to watch Project Runway marathons, House Hunters, Always Sunny repeats and read Entertainment Weekly.  I guess the thing they all have in common is that I can be in and out of consciousness and not worry that I have missed anything important while I doze.

My entertainment consumption mirrors my eating habits of late, too.  I still love a garden fresh tomato (hooray for tomato season!) and other fruits and veggies (except raw green peppers - keep them away!) but other things, previous favorites, make me gag.  Things like mushrooms.  I had never met a mushroom I didn't like until the smell of them cooking became literally gut wrenching.  My tastes evolve almost weekly.  For instance, I wanted nothing more than a Subway sandwich one day and Dave very graciously went to get me one.  This lead to another the next day and so on.  I'm starting to tire of them at this point but I'm sure there will be another fast food craving coming along.  I haven't been eating a lot of junk food like this since my early twenties but if that's all that sounds good then what are you going to do?  Previous craving include fried chicken from KFC (with a biscuit and slaw, please) and sometimes Taco Bell..  Normally all this crap would have me concerned for my health but since I don't have any issues with cholesterol or sodium and I have to keep my weight up, I don't worry about it all.

Dave is doing well and doing good.  He did have a summer cold that lingered for too long but he's all better now.  He's also been relatively busy with housework projects (hello clean windows!) and the always-needing-attention garden and yard.  He's also been helping out our older neighbors with a few of their projects.  He does still have plenty of time to read, go to the gym or pool, meet up with friends for lunch etc.  He is doing his best to enjoy his temporary retirement.

We are right at the one year mark since my diagnosis and it's been quite a year.  Ups and downs?  You bet.  The bad parts are pretty easy to figure out but at least we got to balance that with lots of visitors who gave up their time, put their lives temporarily on hold, and came out to see us.  Oftentimes more that once.  It has been great to see everyone and we wouldn't have changed a thing but now we realize, after seeing we had no scheduled visitors for August or September, we decided to give ourselves a little break and declare these two months "our time".  As great as our friends and family have been about understanding our situation (e.g. not expecting us to make them dinner every night) it is still work to prepare for a visitor and when you have them on average of two or three times a month, it adds up to a long year.  So please, if you have come to see us in the past and/or wish to visit in the future, do not feel as though you are unwelcome.  We're just recharging the batteries right now and as has been true since we moved in together, we love having visitors.

Also, having lots of out of town guests means seeing less of our local friends.  All you SE Michiganders who might want to get together for lunch or something should give us a call.  We aren't trying to shut everyone out during these two months, we just want you to go somewhere else to sleep when bed time rolls around.  :)

Hope you're well and enjoying this mild weather!

well, that wasn't so bad

Yesterday's chemo was a bit anticlimactic.  In the end the doctor decided not to administer the infusion, at least this time.  While it's nice to not have to worry about those side effects I am a little concerned that my limited options are growing more limited.  I'm still taking the chemo pills though so it's not like I have no protection.

Otherwise I'm feeling ok today (so far anyway).  A little better than the day before which was better than the day before that...

three weeks later

Hello.  Today is the next dose of the new chemo.  Given how poorly it went last time, I am curious to hear what the doctor has in mind to correct the issue.  Extra Benadryl to start?  Slower drip so the infusion is more diluted?  Something entirely new?  I'll find out in a bit.

The side effects that were the most troublesome had to be the cold sensitivity and the daily nausea and vomiting while I was taking the pill version of chemo (two of the last three weeks).  The last week has been better though I am still very tired A LOT and occasionally nauseous.  I was told the cold sensitivity lasts around 72 hours.  My experience with it was a little different - it was really bad for closer to 5 or 6 days and even today there's a mild amount of discomfort when I reach for ice cubes.  Not too bad but it makes me sad that the cycle begins again today because as I have mentioned before, I really love ice cubes in the summer!

In other news, most of you already know that Dave is officially out of work now.  The last day for most of the corporate employees was to have been today but they gave most people the day off with pay so he's done a day early.  Yes this is a modestly scary thing to have him out of work (and really sad that Borders is all but a memory) but the truth is it's good timing as far as being my caregiver goes.  Not that there had been an issue while he was working since he was able to leave basically anytime I needed him (his superiors were very understanding about our situation) and we have many friends to rely on as well but as my health declines there will be more and more situations where I want only him to be there.  Almost a little like how a little kid wants their mommy when they're sick.  And he really deserves a break, to take more than a week off for vacation.  I have had a couple of times in my life where I was in a position to take a few months off between jobs to recharge, rethink and just plain relax and let me tell you, it's wonderful if you can swing it.  Since he's getting 12 weeks of severance we have some breathing room which is great. 

We began scaling down a while ago (this mostly amounts to going to the grocery store Meier as opposed to Hiller's - think Walmart compared to Whole Foods) as far as spending goes so even though we'll tighten the belt a little more for right now, we've been living pretty simply anyway.  I think getting rid of so much stuff at the yard sale helped with that "clear the clutter" mentality and reinforces the fact that we don't really need much to get by and still live reasonably well and within our means.  It's not like we're dumpster diving or switching to bottom shelf booze (well, I'm still not drinking but no reason Dave should have to drink martinis made from rubbing alcohol).

In "news that makes us happier than you could possibly know", last night we had a dinner that was composed of pasta tossed with pesto made from our very own basil and a big bowl of tomatoes from the garden - the first of the year!  Nothing like a garden fresh tomato and it looks like we're going to have a bumper crop compared to the last few years.  For whatever reason, we just weren't having success with tomatoes but this year has changed all that.  And normally we are very generous about sharing our garden bounty but I think we'll probably be eating every last one of those tomatoes.  We will have plenty of squash pretty soon for those who are interested.  :)

Well, off to chemo - wish me well!

new chemo? not so great.

Yesterday I began my new chemo routine with the pills at breakfast and dinner as well as my first infusion with oxiliplatin.  The infusion begins with 30 minutes of calcium and magnesium supplements (delivered via IV) followed by 2 hours of oxiliplatin and then another 30 of calcium/magnesium.  I was about 5 minutes from being disconnected and sent home when I became suddenly and violently ill.  Nurses, techs and PAs gathered round.  They pulled the privacy curtains and hooked me up to a heart monitor as well as a blood pressure cuff and some oxygen up the nose for good measure.  After I puked a few times and they injected 50 mg of Benadryl into my IV I started to fell a little better.  It took a while to get back to breathing normally but eventually it passed and I was sent on my way.  What happens now is unknown.  My doctor (who was not present during the infusion) knows what happened and so will be following up with a new game plan.  That may mean pre-dosing with Benadryl or it may mean switching to something else entirely.  Not sure yet...

The other thing that's a bummer is the extreme sensitivity to cold.  I was warned that even putting my arm in the fridge would be painful and while it's not quite that bad it's bad enough that touching something in the fridge feels like getting instant frostbite.  Forget about drinking anything colder than room temp (my stomach seizes up and I puke) which really sucks because I have been drinking iced tea and iced coffee like crazy this summer.  Luckily, this side effect should be gone within about 72 hours of infusion so if I stay on this routine it will mean three or so days of wearing socks (because the bathroom tile is way too cold for bare feet) every three weeks.  I don't think I could bear the prospect of this side effect being permanent as it means quite a drop in my quality of life so I try to stay focused on the fact that I can have cold food and beverages again soon.

There was one bright spot over these past few days.  We had a lovely visit with Dave's sister Debbie and her gentleman friend, Dana.  Well, I slept through quite a bit of it but did get to spend some time with them. 

Thanks for reading - take care!

new chemo routine

Hello.  I know it's been a while (funny how most posts start out with an apology for the long time between posts.  Why should I feel the need to apologize for that?) but there hasn't been a lot to say with regard to my health; I have good days and I have bad days.  Thankfully, we're still at a point where the good outnumber the bad.

We've also just been busy with the usual:  yard & garden, visitors, birthdays, dogs.  Good stuff.  July is looking to be pretty busy at this point as well.

There have been some big developments on the treatment front.  My doctor left for another local hospital and I met my new oncologist yesterday - I really like the new one!  The old doc was fine (very professional and knowledgeable but somewhat robotic) but I felt an instant rapport with Dr. Chen (new) and she has a much better communication style.  Anyhow, the true test is how good is she?  For her part, she took me on at a crossroads; the old routine was predictably losing effectiveness with an accumulation of side effects and, new doctor or not, it was time to switch it up. 

The new chemo routine involves two drugs, just like the previous routine, where one is more mild and one is more toxic.  The more mild drug, Xeloda a/k/a capecitabine, is in pill form.  I take four with breakfast and four with dinner (this brings my daily pill count to 30) every day for two weeks and then take nothing for one week.  Every three weeks I will be treated with Oxaliplatin, the more harsh drug.  This is given via IV (my power port) and requires a dose of calcium and magnesium (also through IV) so the infusion time is back up to three + hours each session.  So each treatment day, when you incorporate blood draw and doctor visit, is again an almost 8 hour day.  Kind of like going to work except I can nap (and they have warm blankets!).  And I only have to go once every three weeks.  So it's really more like the job I wish I had.  :)

Of course, with each new treatment comes diminishing returns.  The doctor is hopeful that the new combo will keep me going for at least several more months but we started with the best treatment for my situation and we can only go down from there.  New possible side effects include:  mouth sores, hand-foot syndrome (google it if you're curious), heartburn, nausea (surprise!), diarrhea, rash, clumsiness/unsteadiness (worse than now?!), confusion (what does that even mean?), dry cough, fever, chills, body ache, numbness in extremities, seizure or tremors, swelling, unusual bleeding or bruising, jaw pain, joint pain, courtney payne (just checking to see if you're still reading) and, the best - extreme sensitivity to cold.  Extreme like eating ice cream will cause excruciating pain.  I really hope I don't get that one!  Thankfully there's no mention of my least favorite side effect ever (it's from using the fat substitute Olestra) - anal leakage.  Now are you still reading?  :)

We're also coming up on the one year anniversary of my diagnosis.  Statistically speaking, most people with stage 4 die within a year of diagnosis.  I have relative good health (other than a little cancer) and youth on my side.  And, of course, there are people who last longer than one year so it's not like some miracle but I still can't help but feel like everything after August is just bonus time.

Take care!

Green Grass

It took a while to get scheduled because of all the rain we've been getting, but we finally have a new front lawn.  To go from mud to lush, green grass is quite a transformation!  Thus concludes the great sewer pipe fiasco of 2011.



Too bad it wasn't done in time for the big yard sale this past Saturday.  While we looked bad from the curb, we obviously had what people were looking for because we sold a ton of stuff - the sale was a resounding success!  We had lots of help from Regina who was visiting from Minneapolis as well as having Irene there all day and Blair and Michell (with Avery, of course) were there for most of the day, too.  Then there's the dozens of friends who stopped by (great to see everyone!), the great weather - all in all, a great day.

Gotta get back to my strawberry pie.  Melissa bought us some great little berries from the farmer's market and I was in the mood to roll out some dough...

So far the big benefit to stopping the cisplatin is that treatment time goes from 4 hours to 45 minutes and even though the were running behind this week we were able to get out in time to meet Val for lunch. I think we can get used to this.

They were running beind at the U of M Cancer Center this week because of the holiday - they usually see about 100 people a day (!) but on Tuesday they were seeing 160!!! The waiting room was quite crowded. We waited on a bench across from a woman and her baby who couldn't have been more than 8 or 9 months old. A nurse came out to greet them, chatted with the woman for a few minutes, gave great big goo-goo ga-ga's to the baby and then said to Mom, "Let's go get her vitals." The baby was the patient.

It shouldn't have surprised me but it did. The peadatric infusion area is right next to the general waiting room and it's always startling to see little kids coming and going. It's easy to think that 40 is so young but so is 4 and not that anyone has it better or easier than anyone else but it does make one pause.

I'm reminded of another treatment sometime in late November or early December. We were in one of the big rooms with rows of reclining chairs. David was sleeping and I was reading. I noticed a young guy two chairs down. He was going back and forth between a laptop and a thick text book. I heard him tell the nurse that he had a final that afternoon. I thought, "How does he do that? I'm exhausted after treatment and I'm not even the one getting chemo!"

Eventually, the chair in between was filled by another young guy. I'd say he was about 25. He was in a wheelechair and not very well put together. He was wearing sweats, untied sneakers, and a rumpled t-shirt and his dirty hair was sticking up all over the place. His nurse was chatty and asked him about his condition. The book was open in my lap but I had stopped reading - this guy's story was so incredible!

When David woke up I couldn't wait to tell him. I whispered the details to him: "See that guy? In the wheelechair? He had to have parts of his spine fused together so they could remove his tumor! He was in the hospital for 6 months recouperating! And he's still got cancer and has to have chemo and radiation!" David glanced over at him and said, "Yeah, but would it have killed him to brush his hair?"

-----

I'm about halfway through my vacation. I had originally taken this week off because my parents were planning on visiting. They didn't come because my mom is getting over being sick but I still took the week off. We've been doing jigsaw puzzles, walking the dogs, catching up on It's Always Sunny in Philadelphia (hilarious!) We saw The Hangover II (skip it and see Bridesmaids instead) and we've been getting ready for the Normal Park neighborhood yard sale. Regina arrives tomorrow to help us with that. The weather has been awesome - hot at the beginning of the week and now just nicely warm. All of last week's rain has really made the garden pop. I'll try to get some pictures together for another post.

Thanks for reading. Enjoy your day!

dialing back on the chemo

Hello.  I finally have some updates to share regarding my treatment.  About a month ago I went from having chemo three weeks of the month to now just every other week.  Now, my doctor would like to take me off of one of the two chemo drugs I have getting because there are long term implications with it (it's called Cisplatin) such as hearing loss, ringing in ears and nerve damage - all things I am experiencing.  Luckily I am stable enough to do this at least temporarily and the other chemo drug, Gemzar (I know I am spelling the wrong), while mild in comparison, should provide enough of a dose for maintenance.

Day to day I have been feeling pretty good as of late.  Still occasional waves of nausea but nothing like I experienced over Easter weekend.  Been getting out for longer and longer walks with the dogs (and sometimes Jenny Weed!) and finding time to spend with friends and going to movies and such.  (For the record, Cave of Forgotten Dreams is visually really amazing and Bridesmaids had me almost peeing my pants.  We recommend both very highly!)

Not much else going on.  We're going to participate in the Normal Park neighborhood yard sale this year (mark your calendars, it's on June 4) so we're getting ready for that.  Visitor-wise we're looking forward to seeing Regina again even if it's only for 5 minutes.  Lucky girl gets to help with the yard sale!  And then there are those Taffners - we're looking forward to getting a visit with Dave's parents in there sometime soon as well.

I guess that's it for now.  Be good!

Easter!

Well, that was fun! Too bad you couldn't be here because we had an awesome time! See...

We colored eggs! Three dozen to be exact! We tried foil embossing and stained-glass-window but decided that just dying in a simple vinegar solution was best. Don't you agree?

Okay, some of the foil ones look pretty cool! We also had fun with bunny ears and candy!

although Marla couldn't get the grillz just right despite trying many, many times...

Courtney and Tanya managed to have a good time:

even though we discovered you can't save a Faygo pop no matter how much you want to

Flat Stanley survived the trip in cargo:

and everyone was happy that the easter Bunny visited the Ypsilanti fairy door:

Hope your Easter was a blast and your Spring is off to a good start!

What next?

Regular readers of this blog will remember that just a couple of months ago we had to have the sewer line from the house to the city line replaced which resulted in our front yard being decimated.  Then we had the dishwasher crumble before our eyes.  Well, we must have been cursed when it comes to water and water related appliances because yesterday we lost our water heater and then this morning the coffee maker started emitting puffs of smoke.  Hopefully the water heater can be repaired (we'll find out tomorrow afternoon) and the coffee maker is already replaced (20% off at Bed, Bath & Beyond - those coupons work even when expired!), but seriously, WTF?

It's been a while since I have posted.  I've been feeling mostly ok but am still having bad days, too.  Been trying to keep up with some pop culture. Tina Fey's book doesn't disappoint, it's one of the better of that genre (Sarah Silverman's recent book was good, too).  At the movies, Insidious was really f-ing scary and Scream 4 was a lot of fun but not that scary.  Was on the lookout for Michigan landmarks during Scream since it was filmed in the A2 area but didn't recognize anything.  Was that downtown Plymouth I saw?  Not sure.  On TV, Portlandia is the funniest show in ages (and I love seeing Portland because I miss it terribly) and The Killing is really good (shout out to my friend Amy D who works as an editor on the show!). Also still digging 30 Rock, Community, etc.

With the nicer weather (never mind the snow today) I've been trying to get out for walks more, too.  Dogs are digging it and on Wednesdays Jenny and I are doing the nature trail thing (unless it rains and then we go to the mall).

Thanks to all who donated to the cancer walk.  It's not too late if you meant to do it but didn't quite get there.

More soon.

Cancer patient flies kite

Sounds like an Onion headline, doesn't it?

David bought a kite at The Rocket last week and we took the dogs up to the school yesterday evening for a test flight. It was super fun! I don't think I've ever successfully flown a kite in my life before yesterday! Once you get it up in the air it's all about keeping moving and giving the string little tugs if it starts to fall. Also, wind really helps.

When is the last time you flew a kite?

We had an all-around lovely day yesterday: I took the day off and in addition to our kite-flying fun, we went to see Scream 4 which wasn't very good but was a whole lot of fun.

What's your favorite scary movie?

Today was another lovely day: grocery shopping and then lunch with Wendy at Beezy's. This afternoon David napped while I read on the couch with the dogs and the wind and rain whipped around outside. I can't believe I have another whole day off tomorrow! What kind of fun will we have? Stay tuned!

Well, hello there!

Wow, it has been a long time since the last update! DT here, slightly shamed since I believe it was I who promised to never go a month without an update. Um, sorry?

I wish I could say we've been busy but that's just not true. It does feel a little like we are slowly waking up from our long winter's nap. There are some lovely signs of spring out there: birds now acompany us on our morning walks, the plastic sheeting is off most of the windows and there are a few green shoots poking up in various places. I was thinking of posting some pictures of our front yard; what with the giant clumps of dirt and the tire tracks from the backhoe it almost looks like flowers blooming on the moon but instead I'll post this:



Front row: Greg, Emily and Dave; back row: Ellen, Amy Beth, Anne, David, Melissa, Tom, Jenne, Stan, Matt, Jenny, Raegan, Kramer, Karen and Matthew. Despite our smiles, we were missing Jane (who was sick) and Dana & Debbie (who broke her foot) and so many others who wanted to walk with us.

Here is Team Martini in lovely East Lansing last Sunday for the Spartan Stride 5K. We were the last team to arrive and the last team to cross the finish line but we had the best t-shirts!

Isn't that awesome? A million thanks to Matt Sturm for the sweet logo. This is actually the second shirt I've owned that Matt designed. He also came up with a fantastic Flash Gordon-inspired design for our bowling league a few years ago. Besides being a very talented designer, Matt is an all-around great person. If you have any design-related needs, let me know and I'll put you in touch!

Thanks also to Emily who coordinated the production of the shirts and to Jenny who got this whole ball rolling. When we first heard about the walk, we never imagined that anyone would be getting up early on a Sunday morning to drive over an hour to walk in who-knows-what kind of weather. And then people started signing up, people we know, people from other cities and states! Once someone mentioned t-shirts I knew I had to do it!

So, thanks everyone for spending a lovely day walking with us. Let's do it again soon!

And before I forget, you can make a donation here. Tell them Team Martini sent you.

Thanks for reading and I hope everyone is enjoying what counts as spring where you are!