What Doesn’t Kill You…

…makes you STRONGER?

Day 1 of CODEX=M/IVAC chemo, and my body is handling it pretty well.

Todays Chemo Specials!

Of course, the chemo drugs haven’t really been IN my body long enough to cause the brutal side effects they keep telling me I’ll be seeing.  AND the nurses are doing an amazing job of both explaining the prophylactic measures they’re taking to prevent bladder problems, nausea, headaches, dizziness, unexpected bleeding—if it is an undesirable side effect, the chances are it’s part of my chemo journey!

I can be relaxed about this so far because it’s only day one.  We’ll see how happy I am on day 7, when the side effects begin to come into their own.  For now, I’ll enjoy what I can enjoy, not that getting liters and liters of fluids pumped into me all day is terribly ENJOYABLE, but it’s not horrible.

Amusingly, one of the drugs can have neurological side effects that show up when the patient tries to write a sentence, so the nurses had me pick a sentence that I can write over and over through the day to make sure that my brain is working as we all want it to work.

There’s ALWAYS money in the Banana Stand!!

The sentence I chose?  “There’s always money in the banana stand!”  Neither of my nurses had heard of it.  There’s nothing quite like explaining an obscure cable TV joke, entirely out of context.  I probably should have chosen, “NO TOUCHING!” as my sentence.

Today Gerry was down at Mayo meeting with his new cardiologist.  I’m so excited about this, because we’ve put his heart health on the back burner since my own diagnosis, and it’s high time that he got a little attention paid to his health issues.  One of my dear knitter friends volunteered her husband to drive Gerry down, and he seemed happy to do it, so we are VERY excited and VERY grateful to Wilson for ‘volunteering’ to be Gerry’s driver, that was a gift!

Andy was taking care of getting me settled in my 5-day hospital room, so they weren’t available for the drive down.  I ended up needing some stuff from home that I forgot, so it was very good that Andy was nearby.

It feels a little surreal to be back on the same ward that I was in when I was diagnosed, now I have no hair, but still the nurses seem to remember me.  It’s a really lovely group of folks here, I feel like I’m visiting family a little bit!

More Weight

There is an odd heaviness surrounding me right now.  My legs, hips, my arms – everything just feels HEAVY.  As if I’m wearing those velcro-on walking weights, as if there’s been an extra 5 lbs added to every limb.

I don’t know what this new symptom means, but it reinforces that
today is a REST DAY, a sitting in my chair and crocheting day.

Cardiologist
Gerry and Andy are headed down to Mayo (we just can’t get enough of that place…) because FINALLY Gerry’s been assigned a Mayo cardiologist to coordinate his heart condition with his Multiple Myeloma.  We’ve sort of been in a holding pattern as far as HIS chemo goes since March, when he was put on Velcade, and that drug seemed to cause conditions where his two heart attacks (March 15 & 30) happened.

I’ve watched Gerry slowly sinking into a very sad mindset, I know he’s feeling so overwhelmed by weakness, and some days I feel like he’s in danger of just giving up.  When he was getting Cardio Rehab he was doing SO well, every day he was a bit stronger, walking a bit longer, just feeling BETTER!  I want that Gerry back!

Around the time I was diagnosed with my cancer, in late July, Gerry had another heart pain episode. Not a heart attack, just angina (that’s a silly way to phrase it – there is NO “just” with heart pain!)  That really seemed to set him back, and my cancer diagnosis didn’t help matters.

And at the same time, it seemed like he couldn’t get in to see a cardiologist up here through HIS clinic (we have different insurances, different clinics – we’re just weirdos) and  instead of me following up on that (as I normally would…) I was dealing with my own health stuff and he was dealing with it right along with me.

So we’re hopeful that this Mayo trip will be the start of a BETTER care plan for him. We want to be able to coordinate his heart AND his Multiple Myeloma treatments so that the left hand knows what the right hand is doing!

Today is mostly testing, then on Tuesday he returns to have an actual VISIT with the cardiologist.  Andy is run pretty thin between Gerry and myself, so we are SO grateful to a good friend’s husband who has volunteered to be driver for Gerry to get him down to Rochester and back.

I don’t dare send Gerry down alone.  Each time I’ve driven him in the
past few months he’s fast asleep by the time we’re past the city limits,
waking up just as we pull up to Mayo.

I am still Gerry’s caregiver, although not as active as I’ve been in the past. I’m not able to carry as much of the burden as I used to, it’s too heavy in addition to my own healthcare issues.

Oncologist
As I’ve stated before on this blog, I’m not a doctor (I don’t even play one on tv…) and for the most part test results just go over my head.  But apparently some of the testing that was done down at Mayo over the past 2 weeks have yielded results that give my oncologist up here at St. John’s, Dr. N, something to consider.

It seems that the cancer is now in my nervous system, and in* my bone marrow, and that’s not good.  Yesterday, instead of getting the spinal tap I usually get (little did I ever think that the words “usually” and “spinal tap” would be used in a sentence involving my health) I was told to just stay home.

My doctor is ‘regrouping’ and I’ll be seeing someone (Doctor? Nurse Practitioner?) on Monday to discuss the route forward for my treatment. During next week I’ll be getting two different Spinal taps, because I am VERY special.

It would be ironic if, after all of the Mayo drama of the past week, I ended up receiving the same chemo cocktail that Dr. T was proposing, but via a different clinic up here (the University or Park Nicolette)  Maybe ironic isn’t the word.

One thing I know for a fact, though, is that I HATE feeling like something is growing & spreading, and I’m just sitting here having a cup of tea.  The exhaustion I’m feeling is absolutely overwhelming (just when I thought I couldn’t get any MORE tired!) and lifting the tea mug to my mouth takes a Herculean effort.

Everything is heavy these days.

*I was, thankfully, mistaken about this.  I misunderstood something my doctor at Mayo had said, but she just messaged me with clarification.  Yay clarification!

My Favorite Story

Gather ’round, kiddies, it’s time for Granny (me) to relate the famous story of How I Met Your Granddad.

I’m writing this as if future me is telling
yet unmet grandkids our story,
because that’s the dearest wish of my heart;
that I will someday be able to meet a grandchild,
and hug them,
and teach them cool stuff.

There was a popular 1980’s movie starring Mark Linn-Baker and Peter O’Toole called, My Favorite Year  It’s a lovely, warm film about a young, father-less, TV writer’s first real job in the industry, his adventures with a movie star who he has long idealized as the ‘perfect dad’ and the way he deals with the disillusionment of learning your heroes have feet of clay.

Go — watch it — I’ll wait.

I love that movie. It came out the year I graduated from college, I thought I wanted to work in TV, and I love Peter O’Toole.

Fast forward 10 years, it was 1992 and I had just been awarded my MFA in set and costume design AND had been initiated into Local 629 United Scenic Artists Union (USA)

Mom, I MADE IT!

After spending the summer designing costumes for a huge outdoor theater fest in central NJ, I’d snagged my first real job on Broadway as a costume assistant on a musical based on My Favorite Year, to be staged at Lincoln Center.

The size of the house determines whether a play is on or off Broadway, but my memory was that this was designated a “Broadway” production.  I may be mis-remembering.

Working with designer Patricia Zipprodt, who I’d long admired, was heady stuff. Even more heady was being assigned to be the “shoe buyer” for the whole production

There were some triumphs (finding shoes to fit tiny male dancers’s feet, shoes which were perfectly in period and beautiful!  Thank you, Nordstroms!)

Mr Curry On Stage, Comfy In His Well Broken-In Shoes

And some debacles (getting shoes re-heeled in the wrong size so the dancers kept getting stuck in the ‘tracks’ along the set – dang!) 

But anything I did wrong was fixable, and I did a LOT wrong.  But I did some stuff right.  And I learned SO much. And it was my first BROADWAY SHOW.  And I was happier than I’d ever been in my life.  It was a reason for celebration, and my mom and her good friend Ruth Clark flew out to witness my triumph as 4th person mentioned in the program under Costume Assistant.  Could life get any better?

When one works in costuming, the day the show opens your job is essentially over and wardrobe (a different union) takes over.  So upon opening of My Favorite Year I finally had my weekends to myself and began pondering what would be next in my brilliant career as Broadway Shoe Buyer.

THIS is how one pays for that $20,000 degree in folding
I’d just acquired at Rutgers, one shoe at a time.

In a side note, the star of the musical, Tim Curry, happened to wear the same size shoe as myself (European 42)  He had MANY pair of shoes, and I was responsible for breaking them in, which was fun and pretty damned cool.  Yes, I have walked in Tim Curry’s shoes, and I can say that he was a delight to work with!  And thank GOD none of the shoes were stilletto 6″ heels.

Hirschfield sketch from the NY Times. Heady stuff.

Also in the cast were my personal heroes Andrea Martin and Lanie Kazan.  Could a young wanna-be designer get ANY luckier than to be able to work with such a kind, funny and exceptional cast?

The show opened in Fall 1992, and not long after I found myself at home, in my teeny-tiny Brooklyn apartment, listening to NPR on a Saturday morning and calling in to try to become a contestant on the Wisconsin Public Radio game show, Whad’Ya Know? which was broadcast live from Madison, WI.

I actually got on the air, and I answered the qualifying question (“Which couple was the first to SHARE a presidential bedroom, not have separate rooms for President and First Lady?”) by, basically, begging the host, Michael Feldman, for the answer.  (The Fords)

Home Sweet Tenement, 106 President Street, Apt 2R, Brooklyn. Or, as my father in law called it, “The Love Grotto”

I was paired with a fellow from the studio audience named Tom, and together we proceeded to win the BIG KIELBASA of prizes.  I’m afraid that I talked pretty much non-stop, which I do when I’m nervous (and when I’m not)  I’m a talker.

Poor Tom didn’t stand a chance.  I think he was able to say maybe 2-3 words.

I talked about me, my hair color, my purse, being from the midwest.  I talked about Kilroy (as in Kilroy Was Here) and driving and making two different types of stage blood (edible and washable)

I did NOT shut up.

And we won!  I don’t remember if we shared the same prizes, but my own prize pack was a book on tape, a cat toy, a 36″ inflatable figure from the Edvard Munch paining, “The Scream” and a tiny chocolate cow.  All of them VERY Wisconsin Public Radio type of gifts.

And then I promptly went on my way, dining out on my very exciting
story of When-I-Won-A-Cat-Toy-On-NPR, which tells you a bit
about my friends at the time, and didn’t think much more about it.

UNTIL a few weeks later when, leaving my Brooklyn apartment for a long 3-bus trip to NJ to visit my dentist (I’d moved from NJ to Bklyn in late Summer, and still had some filling work at the U of NJ Dental School to get cleared up.) I discovered an odd letter in my mailbox.

My dentist was Vinny, a southern NJ cutie who was just about the most handsome dentist I’ve ever met.  I loved Vinny, we had a great rapport and he did a lovely job on my teeth. There is NOTHING like a handsome dentist to get a girl to floss.

So stopping by my mailbox to pick up reading material for the bus rides, I was confused to find an envelope with a Queens, NY return address, but a postmark from Madison, WI.

The letter was — Odd. This was happening during and after the 1992 presidential campaign, and the letter opened with a quote by Admiral Stockdale, Ross Perot’s running mate, which (being a bit of a politco) I found amusing.

“Who am I?  Why am I here?”

Then the letter went on to explain that the writer was in fact living in Queens with his brother after recently relocating from Vermont, but had heard me on the radio and thought that he would like to meet me.  He stressed that he had NO IDEA where I lived, that Ruth Ann Bessman, the producer of Whad’ya Know, had agreed to forward his letter on to me.

So there we were.  Would I like to get together and meet?  He understood if I already were seeing someone, but he thought I sounded “nice” and “funny”

I had NO idea what to do.  I showed Vinny the letter and he thought I should just walk away.  I showed a group of undergraduates from The Stern Yeshiva For Women (the cast of a production of the Dybbuk I was designing) and they all thought it was VERY romantic!

I showed my married friends, and my single friends, who pretty much lined up with married friends warning me off, single friends saying, “Go for it!”

I compromised by sending a Christmas Card.  And I waited.  And apparently the card got lost under a stack of mail at Gerry’s brother’s apartment.  When he finally found it, it was late December.

So Gerry called, we met at the famous Peacock Cafe in Greenwich Village just to have a cup of coffee and scope each other out.  The date was Dec 23, 1992, and on the way I ran into a friend and cast member from My Favorite Year on the subway and told them all about my upcoming adventure.  They told me they had a really good feeling about the meeting.  They were right.

All I knew about Gerry was he was 5’9″ and had a beard.  At that time I was about 6′ and was at my thinnest (I think for about 36 minutes in 1992 I was a size 12, this was that period) so I figured my height wouldn’t be a deal breaker.

This is how tall women used to think about dating smaller men;
if our body mass is relatively equal, it will be okay.

I, being a Virgo Methodist from Ohio, showed up early. I swear that EVERY man in the greater NY area who was 5’9″ with a beard was at the Peacock Cafe.  It was a veritable CONVENTION of them. I should note here that Gerry INSISTS that he NEVER told me he was 5’9″  But I swear he did. And I also swear he WAS 5’9″  So there.

With my recent compression fracture in my spine, I’m currently 5’9-1/2″,
so I understand how important that half inch is.

After asking, and dispatching, a number of bearded fellows, I looked up at the front of the restaurant and saw the sweetest guy looking SO nervous in an ill-fitting jacket. My immediate thought, “I can work with that, I can make him look better…” 

I walked up and asked him, “Are you Gerry?”
Gerry: Yes.  Annie?
Annie: Yes.  I have a table in the back, it’s a bit nicer, let’s move there.

And that brief conversation set the tone for our entire relationship.  We can always do better, and let’s move to my table.  Odd, how those things resound through the years.

I don’t remember Gerry eating anything, but I had a bowl of Minnestrone soup and it was delicious.  Then we went for a walk around the village, and ended up at the Prince Street Cafe.  It seemed like a nice date, but nothing earth shaking.  And then we noticed that all of the chairs were upside on the tables and the wait staff was eager for us to leave. We’d closed the place down, and I felt as though I’d been talking to one of my best friends for 3 hours.

Gerry walked me to my subway stop, a brief little peck on the cheek kiss, and we agreed to get together again.

Of course, that proved to be more difficult than we’d expected.  Crossed wires left me with NO DATE on New Years’ Eve (for whatever reason, after asking me if I were free on NYE, Gerry felt that he was supposed to WAIT until I called him. I assumed he would call me, since he brought up a party he wanted to take me to…  Poor, shy, Gerry.)

We did have a few dates in January, then I asked him over to dinner on Feb 13 so we wouldn’t have Valentine’s Day pressure.  I made him my mom’s fried chicken with some veg and some starch.  Nothing spectacular.  But he fell in LOVE with it, and it’s become his favorite meal to make for me.  Gerry does most of the cooking in our household these days, he’s exceptional at it, and whenever he makes this for me it’s as if my mom is cooking dinner, and it’s lovely.

The Feb 13 date was when I realized that I loved this guy.

Not long after that I headed to North Carolina to work on a Japan-bound Arena Stage Production called LUCAS LIVE!!, featuring scenes from several block buster George Lucas films. My job was to make the Wookie costume and mask.  It was spectacular.

While away, I asked Gerry to cat-sit as I had found a stray a few months earlier, and evidently she got knocked up, and kittens were on their way.  I didn’t want to leave her alone.

One day upon returning to my hotel in Carolina, I had a message at the front desk, “It’s a girl, it’s a boy, it’s a girl, it’s a boy, it’s a girl!!” and the clerk said, “I REALLY hope we’re talking about some kind of animal…”

By the time I returned home, Gerry’d settled in, and he never moved out.  My neighbor across the hall, wonderful Rose Verde, had lived in a 600 sq ft apartment (the match of mine) and had raised 3 kids there.  She kept an eye on me, watched out for me, and was VERY concerned that Gerry and I were living together.  I promised her we’d be getting married, and then it occurred to me I should pass that by Gerry.

He agreed.

So much for romantic proposals.  It doesn’t matter in the least, because when you know, you KNOW.

We called my mom on Mother’s Day to share the joy with her.  My mom, a lovely and kind person, was also a child of her environment.  She was born in 1919 in West Virginia, her father had been in the Klan (although “only for a week, until he figured out what it was!” my mom always insisted) and, although she and dad had several Jewish friends through his business, she was a product of a different generation.

I knew we’d have to handle the matter delicately.

Me: Mom – I’m calling to tell you that I’m in love!
Mable: Oh, honey, I’m SO happy for you!
Me: There are three things you need to know about Gerry, though…
Mable: Ok…
Me: Number one – we’re living together right now.
[pause]

Mable: Well, you KNOW I don’t like that!
Me: Which is why I’m calling to tell you we’re getting married in August!
Mable: Well, that’s a relief!
[pause]
Me: The second thing is — he’s Jewish.
[pause]

Mable: Well, you wouldn’t be the first…

Please note how absolutely enlightened this is coming from someone like my mom.  I like to think Mom was just thrilled that he daughter wasn’t a lesbian.

Me: The third thing is — Gerry’s shorter than I am.  By about 4 inches.
[pause]
[pause]

Mable: Oh, honey.  Oh, HONEY.  Are you SURE you love him?

So the biggest problem my mother had was with Gerry’s height.

Eventually Gerry became so deeply entrenched in my mom’s
(and Aunt Wanda’s and Cousin Jan’s) hearts that they told me if we ever divorced,
THEY would get custody of Gerry.  Thanks, family…

And THAT was how Gerry and I met.

One of the plot points of My Favorite Year was that it was the year the protagonist began his career AND found love.  And the same thing happened for me.  Which is why 1992/93 will always be my OWN favorite year!

This Monday will mark 25 years since Gerry and I were married in Judges chambers in Brooklyn.  The next day we had a more spiritual ceremony with no minister, but led by my best friend and his brother.  A lovely day.

We remain two of the luckiest people in the world.  At this point we’re sharing cancer (he diagnosed with Multiple Myeloma, a bone marrow cancer, in 2006 – myself with Lymphoma, a blood cancer, diagnosed this July) but I wouldn’t trade anything for our 25 years together, and our amazing family of gingers.

Max and Andy at Uncle Joel’s & Aunt Takako’s Wedding

I love you, Gerry.  You make me the happiest woman in the world every day!