Thankful Heart Happy Heart

Thanksgiving was very interesting this year.  Several weeks before, I had been trying to decide whether or not to cook Thanksgiving dinner.  I wanted to go back to Chattanooga, but we just weren't ready to travel again after being gone so long and home so little this year.  We often spend the holiday with some good friends here in the Keys, but hadn't yet made plans, so we were up in the air.  Then, Scott received an email from Al.

The very first phone call Scott made to Massachusetts General Hospital back in April was answered by the admitting RN, Al Ferreira, at the MGH Center for Chordoma Care.  Al was our contact at the hospital for pretty much everything.  He navigated the red tape, scheduled the appointments, coordinated the whole team of doctors/nurses/radiologists, answered our questions, assuaged our fears, and fought the insurance company for pre-approvals and pain med authorizations.  He was a friendly face during morning rounds in the hospital after surgery; he took Scott’s stitches out, and he was a friend to just shoot the shit about Dr. Who when that’s what Scott needed.  Just a few weeks ago, he was kind enough to take time from his busy day to get on the phone with me and the insurance company fighting another charge they were trying to deny.  He was the first person Scott spoke to at the hospital and the last person we said goodbye to.  The entire staff at MGH was amazing, but Al made it all work.

So, the email said that he and his wife were going to be waking up in Key West on Thanksgiving Day, leaving at 10:00 a.m. and driving to Fort Lauderdale.  He wanted a recommendation for somewhere to get a turkey dinner about 2 hours up the road from Key West.  Of course, we suggested that since our house is almost exactly 2 hours from KW they should join us for Thanksgiving dinner, and they accepted.  I was happy to cook and we were tickled to get to host them in our home.

I have written about Scott’s battle with Chordoma, and there is a lot more about it on his Caring Bridge page.  

http://www.caringbridge.org/visit/scottyoungberg/journal

Basically, it is very rare bone cancer.  Very rare.  They call themselves one in a million.  There are only about 300 cases in the U.S. per year.  About half of those are treated at MGH, which is why Scott was there and also why we actually know quite a few chordoma patients from all over the world even though there are so few of them.  But, the one that totally blows the statistics is the other sacral chordoma warrior right here in the Florida Keys.  Out of roughly 80,000 people in our little chain of islands, there are 2 in a million.  How ‘bout them odds?

And it gets stranger.  The guy lives right here in the upper Keys.  And we have, like, a ton of friends in common.  We had never met Jeffrey and his lovely wife Shevaun before this all started, but I guess life or fate or karma or something has a way of bringing people together.  As soon as friends in the Keys started to hear Scott’s story this past spring, the first thing many of them said was, “That sounds like the exact thing Jeffery has.”  Before we knew it, mutual friends put them in touch, Scott called Jeffrey and a friendship began.  Jeffrey was also treated at MGH, had the exact same team of doctors, and basically the same procedures except unfortunately, his was significantly worse.  His chordoma was one of the largest they had treated at MGH.  His battle has been even longer and harder than Scott’s, with a few more after effects, but he is also finished and cancer free! 

Of course, Jeffrey and Shevaun knew Al, so we also invited them to join us for Thanksgiving dinner and they accepted as well.  It was quite a day of giving thanks!  Just being in the company of both Scott and Jeffrey for their first holiday since kicking cancer’s ass was such an incredibly positive and uplifting feeling. But when you added Al into the mix, one of the people directly involved in saving both of their lives, it was kind of magical.  I know Jeffrey and Shevaun both felt it, I hope Al and his sweet wife Ginger did as well.  We all tried to thank Al and tell him how much he meant to all of us throughout the whole process, but he shrugged it off.  I just hope he got a feel for how much he means to the patients he helps. 

I don’t think anyone can go through something like cancer treatment and not be changed by the experience.  Just being the caregiver of someone in treatment has changed me.  Life seems a little more precious.  I feel like I've been given a gift of seeing more clearly the people who truly love and support me and to more easily forgive and let go of those who don’t.  Sometimes it’s been surprising to learn who is in which column.  The generosity of people has humbled me.  I will be forever a more charitable person as a result of this experience.  Every day is a gift and I will try and greet each as such.

 

I am so proud of Scott for how strong he has been and how he fought and won his battle.  It was a hard year.  Cancer treatment is weird medicine…making people sicker to make them well.  The treatments were tough and I know there were days when Scott wanted to quit, but he kept going.  So did Jeffrey, so did little Madi in California, so do all of the Chordoma and all the cancer warriors every single day.  If they can wake up with a smile and a thankful heart, we should all strive to do the same.

It was a real pleasure to have such an amazing group at my Thanksgiving table this year.  As Jeffrey often says, “Peace, love and light” to you all.

Our good buddy Wood was invited to join us as well but wasn't able to make it.  He did, however, do his usual rogue decorating…

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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!

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Bicycle Follies

So, I'm waking up on Saturday morning, a little hungover from the Full Moon party the night before. Scott's already gone, but bless his heart, he left me hot coffee in the carafe. He left before 8 a.m. for Cheeca Lodge to set up for their Earth Day celebration. After our late night, I hoped he wasn't feeling as bad as I was. But, I remembered he had been working most of the night and hadn't drunk as much as I had. Even so, I knew he was worn out…I was feeling for him.

Donna called and we commiserated with each other and blamed Pierre's chocolate martinis AGAIN. They hurt us every time but we keep drinking them because they are just so damned good. Between the two of us, we piece together all the events of the party the night before. "The fireworks were great." "Did I see the fireworks?...oh yeah! I remember, they were awesome!" Stuff like that.

I hang up and decide to go for a bike ride. It's a glorious day and I think it would make me feel better to get some fresh air and some exercise. Fully sun-screened, I put two bottles of water in a small cooler and place cooler, cell phone and house keys in my bike basket and off I go.

The bike path is finally open to the north so I decide to go that direction. The day is absolutely beautiful, a nice breeze blowing and very little traffic on the bike path. After a while I stop in the shade for a drink of water and check the time. I've been riding almost 30 minutes and I wanted to ride an hour, so it's almost time to turn around. I ride just a little further up the path, and then make a leisurely turn to head back the other way. As I turn, my front wheel goes off the path and hits some loose gravel. You know that feeling when you are falling and it seems like slow motion? It was like that. I knew the bike was going down, almost caught it, then went right down on my knee. In coral gravel.

I got up immediately, thinking, "Whew, that could have been bad, I'm glad I wasn't hurt." Then I look down at my knee. Then I pull the walnut sized piece of gravel out of my knee. It's kind of numb and doesn't start to bleed, so I tell myself it is fine and get back on the bike and start riding south. After a few seconds I look down and there is blood running into my shoe. I say, "F**k, f**k, f**k, f**k…" and on like that for a few more seconds, then think, "What am I going to do?" I'm still 30 minutes from home and I have a huge bleeding hole in my knee.

As I pass the Key Lime Products store at MM95, I decide there really is no other choice, so I pull my bike up to the door and go in. I walk up to the counter and ask the woman working there if I could trouble her for a paper towel and kind of gesture toward my leg. She looks down, gasps, then hands me several paper towels and offers the use of her bathroom. I thank her profusely and take her up on it. In the bathroom I take a good look. It is pretty bad. The skin is actually curled under inside the gash…it looks really weird. I wash it as best I can with soap and paper towels and sort of get the bleeding stopped.

When I walk out of the bathroom, the lady working there is waiting and offers me a band-aid (I can't believe I didn't get her name. She was so nice. I intend to go back and thank her and buy something! They have really cute stuff…if you are local, go buy something from them.) There were two woman sitting having coffee at the counter and one of them says how it must hurt. I say, "You know, it looks like it should, but it is actually numb." Then I say (just to gage their reaction really,) "I'm wondering if I need stitches." They all agree that I probably do. Damn.

There is really nothing to do but get back on the bike and ride home. I knew I could call Steve or Donna and they would come get me, but it didn't seem that bad. As I'm riding, the band-aid starts to come off. I have to keep reaching down and patting it to keep it stuck on. Other than the mantra of "F**k, f**k, f**k…," the ride is kind of a blur. I was so mad at myself and so not looking forward to the prospect of an emergency room visit.

I finally make it home and have a chance to really look at my knee. I try to tell myself that I just need to get it cleaned up and maybe it's not as bad as it looks. Then I realize there seems to be bits of gravel embedded in the raw skin. Then I pull the folded skin out of the cut and stop what I'm doing immediately, grab my purse and keys and head to the hospital.

It was my very first time as a patient in an emergency room. Luckily they were not busy and they took me in right away. The doctor came in and said, "We're going to numb it up, clean it up, then sew it up." And that's what he did. Once he numbed it with tiny needle pricks all around my knee, which did hurt a little, I watched him clean it out. Whatever he used to numb it was amazing. The wound was immediately numb. He pulled up the flap and used tweezers to pull quite a lot of gravel and coral pieces out, and I didn't feel a thing. Then he squirted liquid into it and washed it good, then started stitching. I had never watched anyone stitch me up before…it was kind of fascinating. (It's funny how the mind works. As I watched him sew my skin, I was thinking of movies I've seen where the hero stitches up his own wounds, and how I didn't think that was something I could ever do.)

The topic of bicycle accidents was readily discussed by everyone I encountered during my visit at the hospital. From the receptionist, two different nurses (including a really cute male nurse who bandaged me up!) to the doctor himself, I heard horror stories of bike accidents. The most common apparently is being hit by a car. It seems that happens a lot here in the Keys. Also, the doctor had some funny stories of people who were riding their bike because they were too drunk to drive. According to him, the law is cracking down on biking under the influence. Of course the doctor asked me if I wore a helmet and of course I said no, although I might be considering knee pads after this.

Seven stitches later, a bandage on my knee and a band-aid on my shoulder from the tetanus shot, I was headed to CVS with an antibiotic prescription. The doctor thought with the sheer amount of gravel and dust he found that both the tetanus shot and the antibiotics were necessary. Later, finally at home settled on the couch, I had time to reflect that my day had certainly not gone the way I had expected. But, my hangover was gone.