Living In Hope

Living at The AstraZeneca Hope Lodge is like nothing I have ever experienced.  It's the most interesting mix of people; all ages, colors, accents, but all with one thing in common: cancer.  And there are many types of cancer here, all types of treatments, people in many different stages and conditions, and a lot of stories. There is a lot of sadness here, but also a lot of resolve and strength, and a lot of hope.

The first person we struck a connection with was a much older guy, here as caretaker to his wife, who we never met because she never left her room.  She was on a breathing machine and a feeding tube.  They had been here a while when we met him and they left a few days after we arrived.  But, his advice to us was to talk to people, get their stories and take hope from them.  He said to find hope in every story, even the seemingly unhappy ones.  That's the hardest part for me.  When I see the pain in the eyes of the guy dealing with two different types of cancer at once, or hear the lady with half a tongue answer the question of how are you doing with "They are burning me," or hear the sweet little woman talk about beating cancer 12 years ago just to have it come back as radiation induced cancer, it is hard for me to find a lot of hope.  But, I have to remember that each one of them is here, doing what it takes to live.  They have hope in the midst of the suffering.  Right now, Scott doesn't even seem sick.  He has some pain and fatigue, but overall he appears healthy.  I think it helps him to realize how fortunate he is compared to others, but also shows him that no matter how bad things get for people, they continue to fight and hope and he can gain strength and hope from that himself.  Hope is where the heart is.

The place itself is wonderful.  Very comfortable and homey.  So far we've spent a lot of time in our suite, which is very nice and comfy, but there are a lot of areas to hang out when the walls start closing in. Morning news and coffee out in the shared living room is becoming routine.  I think my neighbors are getting used to seeing me in my jammies and fuzzy slippers getting coffee in the mornings.

Cooking meals in the shared kitchen is kind of weird, but kind of cool too. There are 4 kitchens, each one with 2 stoves, 2 microwaves, 3 sinks, lots of cabinets, 2 refrigerators and a large freezer.  Each room has an assigned shelf in the fridge and freezer, and a cabinet for food.
Eating in the large communal dining room is social time.  One night a guy played harp.  One night volunteers came in and cooked Italian food for everyone.  And Scott has even played a little guitar down there while I cooked a few evenings.

They have movie night in the theater room once a week.  There is a library with a fire place, an art room, a game room, and a lovely little garden area that will be nice when it warms up.

Today I found myself a great little quiet space while Scott naps.






I haven't had much opportunity to explore Boston yet.  It's been cold and rainy much of the week.  And the trips to and from treatment take a good chunk of the day.  I am doing my best to avoid driving and parking downtown, so we are taking various forms of transportation each day.  The Hope Lodge provides a free shuttle to treatments, so we've been taking it to the hospital each morning.  That ride is a trip!  I'm very thankful that I'm not drinking here because if I was even the slightest bit hungover in the morning I would definitely hurl all over the van.  Since right now Scott is still one of the visibly healthier people here, we usually volunteer to crawl all the way into the back seat of the van so the ride is rougher, kind of like being in the back seat on a roller-coaster.  The roads from here into town are very narrow and hilly.  We've been catching either the 8 or 9 o'clock shuttle so traffic is pretty heavy heading into downtown.  The driver, Cheresa (like Teresa but with a K) drives that bus like she is driving a little sports car.  She takes curves so tight and so fast, and forces her way into traffic, I just hold on and hope we make it.

Three of the days this week we weren't able to catch her for the return trip, so we took the train.  Riding the "T" is an interesting experience too. The first day I felt like such an idiot trying to figure it out...had to ask for help 3 times.  I'm sure I'll be a pro before this is all over.



We found out this week that after his surgery in August, Scott will have to come back for another round of radiation in September.  We are very hopeful that he/we will be able to get back in here at that time.  This is THE place to be, living in HOPE.

The Murder Of The Dolls

Tonight I'm going to share a funny story.  Well, morbidly funny.  In fact, it's kind of a horrific story, but I bet you laugh.

Several months ago, my parents sold the house they had lived in for 40 years.  My brothers, sisters-in-law and I did all the packing and moving, and in the process, we came across some treasures from childhood. Among the loot, there was Ken's 4-H trophy, Mark's Star Wars figures and Commodore 64, and my dolls. Years ago I had asked Daddy to get my dolls out of the attic so they wouldn't melt and ruin.  I'm not sure what I thought I was saving them for.  I knew they weren't collector items.  I played with my dolls.  Maybe I was still holding on to the idea that I would pass them on to someone one day.  So, on packing day, I found the box in the hall closet, carried it to the living room, sat down in the floor, opened the box and prepared for a walk down memory lane.

As I pulled each doll from the box, I realized that they were in pretty bad shape.  Like I said, I played with my dolls.  Not only were they not collector items, they weren't even something to be passed on to the most wide eyed little girl.  Their hair was matted and tangled, or missing all together.  As I removed each doll, I would say her name and state her special ability, such as, "Oh, it's Cathy Quick Curl.  She had hair you could curl with a little curling wand.  And, it's Peaches the Puppet Girl.  She had little puppets you stuck in her hand and when you pulled her string she made the different puppets talk.  This is Me Too Baby.  I think I named her that because she looked like the baby sister in a book I had called Me Too.  When you laid her on her back she made a little cooing sound and her eyes closed, and when you sat her up, her eyes opened. Oh, and look, it's Baby Tender Love. I loved her.  This was my third one.  She drank a bottle and peed." But, I noticed that not only was Cathy Quick Curl's hair mostly gone; all of Peaches puppets were missing and when you pulled her string, she did a sort of Darth Vader impression; Me Too baby's eyes were stuck closed; and Baby Tender Love, whose mouth used to make nursing motions when she drank her bottle, had a split lip showing metal like a little Terminator baby. When I pulled out the one legged Ken doll, my brother Mark exclaimed, with a look somewhere between horror and disgust, "Dolls are so creepy!"

I reluctantly packed the poor misfit dolls back into the box, and looked sadly at my mother who had been watching me closely through this whole process.  I really think she was seeing the little girl Suzi who dearly loved every one of those dolls and played with them constantly.  When I announced that I didn't think any of them were worth saving and were probably just trash, mom said, "But you can't just throw them away.  That would be like murder!"  She had me there.  So, I promptly carried the box out and loaded it into my car, with the intention of taking them home to throw in the garbage in order to save my mother the trauma of murdering my childhood babies.

Upon arriving back home, I carried the box of dolls into the house while Scott looked on in disapproval. While I had made a virtual pinkie swear to resist the urge to load up my car with lost treasures, here I was unloading a box of beat up babies, along with a big bag of my great-grandmother's needle point, a couple of children's books (including the above mentioned "Me Too" book which I loved so much as a little girl) and some clothes and shoes dating back to Mom's shop-a-holic days that I rescued from her closet.  Over all, I thought I held up my end of the bargain pretty well.

The box of dolls sat stacked in my guest room for several weeks.  Finally, on a ruthless cleaning day, I announced that the dolls just needed to go. But, I was still having trouble with simply throwing them in the trash, remembering my mother's use of the word murder.  Then I had the bright idea to just put the whole box up by the road and see if anybody took them. I guess it's a fact of life most places, that if you want to get rid of something you simply place it at the road and it will disappear.  So, we carried the box out and set it between the driveway and the road.  Scott even opened the lid to the box so passing cars or pedestrians could get a good look at the merchandise.  That's when it really got creepy.  There was a beat up cardboard box, with the lid thrown back, and all those nappy headed dolls staring vacantly at passersby.  Upon leaving and returning in the car at one point during the day, I noticed that the Me Too baby now had both eyes wide open, but one of them had bleached out white so she had one brown eye and one glowing white eye.  I realized at the moment that nobody was going to take that box of misfit toys.  I had to admit that they truly were bound for the trash.

Being the nice guy and good husband that he is, Scott volunteered to dispose of the pitiful collection for me, thus saving me the heartache.  He didn't even announce when he was going to take care of it, only promised me that they would go away and I wouldn't have to watch.  Much later that day, I was working, when I heard Scott come in from outside and exclaim loudly, "Well, that was horrific!"

Since I had last taken a peek at the box of horrors terrorizing the neighborhood, it had rained.  It seems that at that point, the dolls were all water logged, what hair that remained was plastered down to their little plastic heads, the ratty frills on their dresses made thin and even more threadbare by the soaking.  The poor stuffed Raggedy Ann doll was bloated with water.  And through it all, the Me Too baby with her big blind white eye was staring accusingly at the cruel world that had left her as no more than a pile of wet garbage on the side of the road.

Scott dragged the box back to the trash can, and Me Too baby was the first one thrown in.  As she hit the bottom of the can and landed on her back, she made her little signature cooing sound, and the eyes, which should have closed for the last time, remained wide open, one brown and one glowing white, staring up from the depths of the trash can.  Poor Scott.  The plaintive little cry coming from the bottom of the can was just the creepy finishing touch he needed on the whole macabre scene.  But, then it got worse.  As each and every water logged doll followed Me Too into the trash can and landed on her soft upturned belly, they caused her to make the coo or crying sound...every single doll, every single time.

The trash can is waiting by the road for trash pick up day, and I try not to think too much about its contents.  I admit that I'm afraid to get too close to the can for fear I will hear that little cooing cry coming from inside.  I hope the garbage men don't hear it and attempt a rescue only to find the creepy valley of the misfit dolls inside.  That is truly the stuff of nightmares.

One more for the road...

"So make it one for my baby, and one more for the road."  ~The Chairman Of The Board, Frank Sinatra

Yeah, well, so my good buddy alcohol and I may have to separate for a little while.  Since Scott is in the clinical trial for Nilotinib, he isn't supposed to drink alcohol after starting it today.  Dr. Cote was pretty funny when we were there last month and first discussed drinking while on the drug.  He started by asking if Scott drank alcohol.  I piped up and answered, "Well, doc, we do live in the Keys so it's kind of a way of life." That got a big laugh, but then they started asking if rehab was needed... I had to retract my joke, and I hate having to retract jokes.  Damn doctors for not being able to take a joke.  He said he would prefer that Scott not drink while on the drug.  "Prefer" doesn't mean "NO" but, after today, Scott probably won't be drinking. I know he drank rum in the hotel last night, but as of today, for all intents and purposes, he won't be drinking alcohol until treatment is finished.

What about Suzi?...you may be asking... I know I am!  Out of respect, I will be seriously cutting back on my drinking.  I told Scott that I wasn't going to promise to tee total during all this, but I would cut back, and try not to drink in front of him, much.  I'm not even sure if alcohol is allowed in the Hope Lodge....probably not. I would guess most of the patients aren't allowed to drink.  And while the caretakers might NEED to drink, it's not about us, it's about the patients.

So, tonight while Scott is still in Boston, I'm gettin my drink on.  Cheers!

Put on your big girl panties...

Sometimes it just sucks to have to be a grown up.  I tend to think I'm a super woman, but today I had to admit my limitations.  After many tears this morning, I had to admit to myself, and then to my girls, that I am physically not able to make DIVA Fest this week.  The only way to make it work would be pushing the drive up and back in one shot deals, almost 12 hours of driving each way, and cutting it down to just a few days.  That wouldn't give enough days to recover from the long drives, not to mention not allowing any time at home to pack and prepare the house to leave next Monday and be gone for a month.  It just isn't physically possible.  But, I can't believe I'm missing our 10th Anniversary.  So, I'll cry a little more...ok, probably cry a lot more; then probably get drunk...ok, I will definitely get drunk.  But I will do the responsible thing and admit that I am needed for other purposes this summer and I'll do what needs to be done and then life can get back to normal.

Staying home this week is the right thing to do for Scott too.  He has been so sweet insisting he wanted me to get the girl time in before everything started in Boston.  But, I really wasn't feeling right about leaving him all alone during his last week at home.  I feel much better about being home with him this week.

So, I'll pull up my big girl panties and be a damn grown up.
I'll be missing my girls this week; I'll miss dancing to the DIVA anthem. See you next year beautiful DIVA's!  All I wanna do is have some fun...

Please Come To Boston

“Please come to Boston for the springtime.”

Well, she might have said no, but yours truly will be going to Boston for the spring and summer.  Well, at least I hope it is springtime when I get up there.  When I was there at the end of April it was still wintertime.  Surely by the end of May it will be springtime.  Surely.  Maybe even summertime.

“Please come to Boston, she said no.”  I’ve always wondered about that song.  I mean, come on….

“We’ll move up into the mountains so far we can’t be found

And throw ‘I love you’ echoes down the canyon

And then lie awake at night until they come back around”

That’s one of the most romantic lines I’ve ever heard.  How could anybody say no to that?

____

  

Scott has insisted that I go to DIVA Fest next week.  He’s going up to Boston for another quick two night trip by himself.  I felt like I should have canceled the DIVA trip altogether, but he made a pretty big fuss over it.  But I am cutting it short.  Just feel like time is precious.  Especially healthy time.  He might be pretty sick before the treatment is over, and I feel like I need to be with him and help him make the most of every minute. 

Pretty much as soon as I get back, we will be packing the car, shutting up the house and hitting the road.  All three of us as far as Atlanta.  We will be leaving SugarBear in Atlanta with his foster family.
I’m going to miss that cat.  He has become the sweetest, funniest cat I’ve ever known.

I know that leaving him in a stable loving home for a few months is the best thing for him, but damn I’m really going to miss him.  And I worry that he will think he’s been abandoned again.  Poor little guy.  But it just wouldn’t be fair to subject him to the uncertainty of Boston.  And we will eventually end up in the Hope Lodge and they don’t allow pets anyway.  I know SugarBear will be fine, but it’s been a hard decision.  It’s going to be a weird summer, but then our life will get back to normal.

It should be interesting driving all the way to Boston.  I’ll be seeing country I’ve never seen.   It will be a lot of time on the road.  All by myself on the way back.  

I really hope the time in Boston is fun as it can be.  At least the first few weeks Scott should still be feeling pretty good, so I hope to spend time exploring the city.  His treatments will be every day, but only for 30 minutes or so, I think.  Looks like there will be plenty to keep us busy the rest of the time.

So, “Please come to Boston.”  

What else can I do but go to Boston?

“Now this drifter’s world goes ‘round and ‘round

And I doubt that it’s ever gonna to stop

But of all the dreams I’ve lost or found

And all that I ain’t got

I still need to lean to

Somebody I can sing to”

____

I Cry

I cry

Sometimes I cry

For you for me

What could have been, what might could be

I cry

Sometimes I cry

For him for her

For dreams denied, for what comes after

Tears drown reason

Regardless of season

You used to hate winter

Now you go on a bender

Meet each day in a daze

In an alcohol haze

I’m not gonna lie

Sometimes I cry

The future’s uncertain

Ignore the man behind the curtain

Home is yours indeed

If life gives you what you need

A heart or courage or a brain

The scene plays out again and again

Ask and you shall receive

See there’s nothing up my sleeve

Tears may be a blessing

A special kind of cleansing

You know you should embrace it

Admit you never could replace it

But at the end of the day

I got one thing to say

And I’m not gonna lie

Sometimes I cry

I cry

Sometimes I cry

For you for me

What could have been, what might could be

I cry

Sometimes I cry

For him for her

For dreams denied, for what comes after

I cry

___

Faith, Hope and Love

I just had an epiphany regarding the nature of faith.  I have to admit that I associated the idea of faith strictly with faith in god and, not being a religious person, never gave it much thought.  But, I think I now realize that faith doesn't have to be in god or a higher power or in anything specific.

Faith is simply believing.  Not just believing, but knowing.  Knowing in your heart that what you hope for will come to be.

My previous posts have been about hope.  Hope is something to look forward to, hope makes life worth living.  I think that faith is belief in hope; faith gives hope a chance.  I've said that hope is where the heart is. Then I think maybe faith is where the soul is.  If hope can make a heart soar, faith gives wings to the soul itself.

And love, well love...  "Now Faith, Hope and Love remain, these three things, and the greatest of these is love."

Several years ago I was asked by a therapist to write a short essay on what love meant to me.  It was a tough assignment.  I thought I would share.

What is Love?

How do you describe love?  Romantic love.  Poets, songwriters, authors and philosophers have tried for years to put words to the feeling of love. 

 “Love is a many splendored thing.” 

“Love lifts us up where we belong.”

“All you need is love.” 

“Love makes the world go ‘round.” 

“How do I love thee, let me count the ways.”

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.”

“The greatest thing in this world is to love and to be loved in return.”

I worried over this little project for days before I even started trying to write anything.  I began with the question “What is love?”  I puzzled over this, and every time I thought I had an answer, it was simply how love made me feel, or how it made me behave.  This soon made me realize that I don’t know how to define love itself; I can only describe what it means to me.  And, perhaps in doing so, it will help me come to a better understanding of the thing itself.

Loving someone means that I put their happiness above my own.  I realize that recent events may seem to imply the opposite.  But, hurting someone you love as a result of your own selfish or foolish actions, or even as a result of decisions they wish you hadn’t made, is not the same as intentionally causing them pain.  But, the heart is a precious thing, and loving someone, giving them your heart, requires so much trust.  If someone trusts you with theirs, and you accept it, you take the responsibility to protect it, to cherish it.

Loving someone means that I want the best for them.  The best of health, happiness, success…

Truly loving someone means loving them for who they are, accepting and loving everything about them, and not wanting to change them, not wishing they were different somehow.

Loving someone makes me want to be a better person.  Makes me want to be a person they would be proud to love, proud to be with. 

Of course, on the selfish side, I want to love and be loved by someone who makes me feel good about myself; someone who gives me positive energy, someone who shows me love and affection.  Someone who accepts and loves me for who and what I am and doesn’t want to change me or wish I was something I’m not.  I want to be cherished.

“Shouldn’t I have this, shouldn’t I have this?  Shouldn’t I have all of this, and passionate kisses… passionate kisses from you?”

Loving someone is so much more than physical, but physical attraction is important.  Beauty seen through the eyes of love creates a physical attraction that goes so far beyond simple lust. 

Loving someone is a physical chemistry, like electricity…their touch is like feeling that spark you feel when you shuffle your feet across the carpet in winter and then touch something metal.  Meeting their eyes across a room causes my heart to skip a beat.  The thought of their touch makes me shiver, makes my private parts flutter.

So, what is love to me?  Love is what keeps me from just being another lonely person living a solitary life.  Love connects me.  Love completes me.

I didn't write this next part, but I just saw it and thought it was so perfect I had to steal it.