Hope Is Where The Heart Is (5)

"Hope is where the heart is." Wonderful words, written by my dear friend Lisa just before we lost her to leukemia at the young age of 32. She used it to say that those who had never suffered in some way were missing out on understanding the joy of hope. She was an amazing person and inspired everyone around her right up until the day she was taken far too soon.

I wrote the first blog entry under this heading back in April 2014 when Scott was first diagnosed with cancer. What a journey it's been! (Sorry Scott, I know I'm not supposed to refer to it as a journey unless we're going on a cruise...but you won't go on a cruise!) Scott still endures the agony of scanxiety every six months, and he never has to wonder if he'll meet his insurance deductible, but he remains cancer free, and that's a wonderful thing. Our good friend Jeffrey, our "2 in a million" friend, was also recently declared clear after a long, hard battle. He was the other chordoma patient right here in the Keys; statistically impossible, and yet, there it is. We are thrilled for him that he can now look forward to the rest of his life!

Many we know haven't been so lucky. We lost another chordoma warrior this week. A beautiful young angel named Madison Rose. She was 23 years old. When I read the words this morning, I sobbed. First I yelled an expletive I won't repeat here, then I sobbed. I sobbed for a girl who's late teen and early adult years had been nothing but surgeries, treatments, recovery, wash, rinse, repeat. She had endured so much by the time we met her, and yet still smiled the biggest, brightest smile. When I met her, she was in a hospital room at MGH undergoing chemo. She had no hair, was very thin, wearing sweat pants and a Boston Strong t-shirt, hooked up to tubes and wires, but she still sat up and talked and laughed and made everyone in the room feel better. She was one of those souls who gave hope to everyone trying to comfort and take care of her. Her strength, courage and grace were amazing, especially for one so young. She was 19 when we met her, in Boston for her second surgery. She and her family were so full of hope, it was contagious.

It was really Madi's dad, Chris, who started it all! When Scott was first diagnosed, he "went a little crazy" (his words) and did a lot of research; as a result he found a wonderful chordoma support group on Facebook. It was so helpful to us...we found out that MGH was where the experts were, found out about Hope Lodge, and so much more from that group. We jokingly say that Facebook saved Scott's life. I don't know what we would have done without the information, advice, support and encouragement we received from that group. Scott was pretty open on social media, and that extended to the chordoma group.

As you can imagine, a lot of the people we met on the group page were also seeking treatment, or had been treated, at Massachusetts General Hospital. Many had the same doctors, and many also stayed at Hope Lodge. It's such a small number of people who have chordoma, it's really a small community. Scott was in the breakfast line at the hospital cafeteria, "Eat Street," (where they had the best breakfast sandwiches in Boston!) when he heard someone behind him say, "Are you Scott?" When Scott turned around the guy behind him said again, "Are you Scott? I recognize your jammie jeans." Many jokes and pictures had been bantered around on Facebook about Scott and his jammie jeans, and Chris recognized him! That happened after Scott had been in Boston for almost a month, and during those 2 weeks that I came home and let his parents take turns staying with him. I believe his dad was there when they met Chris and Madi's mom, Colleen. Madi was post-op and not up to visitors, but Scott and Chris became instant friends.

I met them through email and social media right away. Scott and Madi exchanged encouraging messages to each other. She sent him this picture when he was in the hospital, post-op. I remember how it made him smile!

Her hair was growing back, and she looked so cute and healthy. Hard to believe that just a month later, she was back at MGH for another round of chemo.  Her chordoma was clival (at the base of her skull.)

I was finally able to meet Chris a few weeks later, along with his wife Angela, and Madi's mom, Colleen. On one of our daily visits to the hospital for Scott's treatment, Madi felt up to saying hello and we spent some time in her hospital room with her and her family. Chris later wrote about our meeting and the "uncommon bond" Madi and Scott shared on Madi's blog page:
Madison Rose-One In A Million: West Joins East/East Meets West

Later in the summer, following Scott's surgery, Madi was back in Boston for chemo. We were able to have breakfast with Chris and Angela, and even meet up with Chris in the hospital lobby when we had to go in for a check up. Here are he and Scott chatting while I was in line at the pharmacy. Scott is laying down because he still wasn't able to sit well during this time.

I remember we were planning to ride the "T" back to Hope Lodge like normal, but Chris insisted on paying for an Uber ride. He requested the larger Uber EX so Scott could lay down in the back seat. Chris was so helpful and encouraging to both Scott and me during that time. He was the first person to warn me about friendships and relationships changing as a result of what we were going through. We really did seem to share a bond, the uncommon bond of chordoma. Even though he was constantly worried and in fear for his baby girl, he would still find time to send us information and helpful advice. He even ended up taking on an administrative role for the Facebook chordoma group page.

We continued to stay in touch periodically after that. We followed Chris's blog and knew that Madi had a couple of set backs. It was so hard to hear that she had started back to college!...then hear that she was back for more chemo or another surgery. I knew it was a difficult road for her, but they were such a strong family, and she remained such a shining beacon of strength and hope. It never entered my mind to consider any option other than her beating chordoma finally and going on to live her life to it's fullest.

When I read the words this morning, I sobbed. I sobbed for that beautiful young girl, with so much life to be lived. I sobbed for her father. I sobbed for her mothers. I sobbed for my own guilt over feeling grateful that Scott's outcome wasn't the same. I sobbed because cancer has claimed one more person. I sobbed because we lost a little bit of light from the world this week. I sobbed because I know that Madi and her family experienced and understand the tragic beauty and wonder of hope. And even when it breaks your heart, hope is where the heart is.



READ MORE STORIES ABOUT LIVING IN HOPE

Hope Is Where The Heart Is (4)

It's that time again.  We leave tomorrow for another trip to Boston.  It's funny the mixed feelings I have towards that city!  On the one hand, every time I have headed that direction, there has been a sense of anxiety and dread.  On the other hand, they saved my husband's life there, so the city of Boston will forever have a special place in my heart.

It was one year ago that they removed the tumor and Scott became "cancer free."  Aren't those beautiful words?  Six months ago, we heard those same words, and we'll hear them again on Monday. 

Being sure we'll hear good news doesn't lessen the anxiety...or scanxiety.  It's a strange mixture of feelings itself.  On the one hand, I have absolutely no doubt that the results of the scans will be good, Cancer Free!  But, on the other hand, I am still terrified.  Scanxiety, indeed.

But, we have Love!  Love makes us strong, love is strength.  

We have Faith!  Faith and belief that the best is yet to come

And we have Hope!  Hope is Strong!  Hope Is Where The Heart Is!

Hope, Love and Faith all together are unstoppable! 

Read more about Scott's story, and our story of HOPE.

HOPE IS WHERE THE HEART IS!

Hope Is Where The Heart Is (3)

It has been 6 months since Scott finished cancer treatment, and it's time for the first post-treatment scans.  It's been almost one year since we first heard the word "chordoma."  Life has gotten more or less "back to normal."  Scott is working regularly, and is doing very well.  His strength will take a while to come back, he still gets fatigued, and he still has a deal of pain, but when we think about all that he went through, it's a miracle he is doing so well.

Now we prepare for a return trip to Boston for scans.  I've picked up a new term over this last year, "scanxiety."  Following the chordoma support group on facebook, I've read many stories of the fear and anxiety leading up to follow up scans.  Chordomas like to come back, and that's a scary thought.

In it's own weird way, almost scarier than initially hearing the diagnosis.  Thinking back, once the "C" word was out, all focus, thought and energy went into figuring out what needed to be done next and dealing with setting up treatment, surgery, travel, lodging, caregivers, insurance, financial aid, etc.  There wasn't enough time or energy left over to worry about even the possibility of treatment failing or a return of the tumor at some point in the future.  But now, with all that behind us, I find myself terrified at the prospect of going through it all again.

Having watched Scott handle whatever was thrown at him for 6 months, I can't imagine having to watch him endure it all over again.  I have figured out that when people refer to cancer patients and survivors as warriors, and talk about fighting and staying strong, it's because the cure is hell.  Cancer patients go through hell to come out well again.  To watch them making that journey through hell with grace and especially with a sense of humor, is truly something amazing to observe.  But, they do it because it's what must be done.  Life wins.  But, to knowingly take that same path again, and sometimes again and again...to walk back into hell, with the memory and scars of your last visit there still fresh on your brain and your skin and bones, takes more strength and courage than is right to expect of any human being.  But, they do it everyday.  You do what you have to do to live.  Because life wins.  Still, it breaks my heart for Scott having to even contemplate the possibility of walking back into hell while he is still healing from his last trip.

I know that his scans will be clear.  I KNOW they will be clear.  And, I truly think he believes that they will be clear.  He hasn't expressed a lot of fear or scanxiety, but it must be there.  I've joked that I am more nervous about it than him, but of course that isn't true.  I think his dreams are troubled, how could they not be?

His scans will be clear this time, his scans in 6 months will be clear, and the next and the next, and the next, and so on...  HOPE is strong, HOPE is strength, HOPE is courage, HOPE IS WHERE THE HEART IS.

Hope Is Where The Heart Is (1)
Hope Is Where The Heart Is (2)

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.

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.

Hope Is Where The Heart Is (2)

After writing the previous post, I have spent a lot of time thinking about my old friend Lisa.  It may seem funny that I am looking for hope from someone who didn't survive their battle.  Lisa was one of the best, most positive people I have ever known.  To this day, thoughts of her are accompanied by a soundtrack of Billy Joel singing "Only the good die young."  She inspired love and hope in everyone who met her.  When she was at Vanderbilt Hospital for leukemia treatment, she was an inspiration to every single person who came in contact with her.  The doctors and nurses would spend time in her room when they needed cheering up.  Even as they prepared her for the bone marrow transplant surgery from which she wouldn't wake, she was so full of hope and encouragement to everyone around her.  So, yes, I still look to her for hope and encouragement now, knowing that was perhaps her purpose in this life.  I still think about her and miss her, but I know what she would tell me if she was here today.  She would tell me to have an open heart, to love and to HOPE, always.


I've also been spending a lot of time thinking about how this "C" word has actually been more a part of my life than I was giving it credit for.  But, I also realized that my experiences have really been more positive than otherwise, so I find even more reason for hope.  Within my group of girl friends there are 2 breast cancer survivors.  One of those lovely ladies only recently completed her ordeal and came out the other end a survivor, complete with the most amazing positive attitude and love of life I have ever seen, along with a beautiful head of soft curly hair and the new "girls!"  The other wonderful breast cancer survivor is married to a colon cancer survivor, now both in their 70's and healthy and cancer free.


I love that word, "survivor."


While we are drowning in bureaucratic red tape this week, I know that Scott will soon be in the best hands possible.  It really is criminal how the insurance companies and so called medical specialists make you wait and fight, fight and wait, and go round and round before the proper approvals, tests and results can be scheduled and forwarded to the right places... all before the poor patient even gets to talk to the "experts."  All made even more difficult by the fact that said patient is probably scared, a little freaked out and extremely anxious to start getting answers and a plan of action for treatment. 


But, one fight at a time.  I have promised to keep Suzi Bitch under control and only let her off the leash when she is really needed.  My primary role needs to be companion and play mate, and focus on giving Scott something to hope for and look forward to.  I will also learn to be a better nurse/care giver.  If you know me, you know that is not my natural proclivity.  Poor Scott is so patient as I fumble my way through wound care and bandaging...I am getting better every day!  At least I can make him laugh with my inadequacies.  If I can keep him laughing then I am doing ok.


So, as long as we can fight our way through all the sticky tape this week, things get real next week.  The experts are ready and waiting for him at:
http://www2.massgeneral.org/chordoma/


This time next week, hopefully we will be in Boston getting answers and making a plan.  Scott will be a survivor.  I have no doubt.  I have HOPE.  Because HOPE IS WHERE THE HEART IS!

----

Hope Is Where The Heart Is

It seems the "C" word has come into my life.  I consider myself fortunate that I haven't been forced to become more intimate with the hated word so far in my 47 years.  I lost a friend and a grandfather to leukemia, and just lost a good friend/fellow DIVA very recently to what may or may not have been cancer...I really don't think they know what took sweet DIVA Sue, it was just sudden and tragic.  And, Dad had prostate cancer 5 years ago.  While it was big and scary at the time, surgery and some basically simple follow up treatment has left him cancer free and healthy.  As a matter of fact, I just got back from moving him and my mom into a new place and helping set them up for the next phase of their life.  So, while it has certainly touched my life, I hoped to never be on a first name basis with any type of "C."

Count your blessings when you can, because life can change in the blink of an eye.

The same week that I was rejoicing in the fact that my parents were finally in a better place, both physically and financially, and the fact that I wouldn't have to spend so much energy helping them and worrying about them, Scott's doctor calls and uses the "C" word.  Well, actually he used a completely unfamiliar "C" word, Chordoma, which Google revealed to be the damned dreaded hated familiar "C" word.

Now, as I begin to prepare myself for this next phase of our lives, trying to study and learn and figure out how to keep Scott positive and happy, I don't seem to have words.  The last words from my old friend and co-worker, Lisa Parker, who was lost to leukemia when she was only 32 years old have been echoing in my head.  So, for now, I will borrow words from someone so much stronger than me until I can come up with my own. 

Lisa's Journal Entry, 8/24/01 - "I have always been a big believer in P.M.A. (Positive Mental Attitude.)  ...It really works.  There are so many people that complain about things and go through life mad.  Those are the people that have it made and just don't know it.  I think that the happiest and most appreciative people in this world are the ones who have experienced trials and tribulations.  And the reason for that is they have known the greatest emotion of all... HOPE!  HOPE IS WHERE THE HEART IS!  If we don't have hope, then we have nothing to look forward to.  And can you imagine what kind of life we would have if there were nothing to look forward to?"

He will beat this and we will make it through to the other side and have a long and happy life ahead of us.  I know and believe that.  I have to.  I have to hope.  Because hope is where the heart is. 

----