Thursday, September 22, 2011

A Funny Thing Happened on the Way to the Infusion

Although I live in a small town of less than 2000 people, the neighboring burg, Branson, MO, is a noted tourist destination that brings in several million visitors annually.

Enticed by nearly 100 live shows, shopping, dining, theme parks and attractions, friendly, hospitable people, and pristine lakes - all set in the spectacular natural beauty of the Ozarks of southwestern Missouri- Branson and its surrounds can get awfully busy.

That's the good part. We genuinely like the visitors we get from all over the world. We even like the folks that amble up from Arkansas.

The not-so-good part is that our roads are often filled to the gills- Ozark's talk for 'crowded'. Branson, itself, has added roads and special routes to handle the traffic quite well, but some of the neighboring towns have fallen behind in improving the infrastructure to handle the steady stream of travelers.

Yesterday I was running late to my 91st weekly maintenance chemotherapy appointment (half an hour away in Branson) and I was aggravated that a road flagman stopped me so that the construction crews could continue their unending work of adding new traffic lanes. I was told that it could be a delay of 15 minutes or so.

15 minutes in  OST (Ozark's Standard Time) is likely to be 30 or 45 minutes in reality. It's not quite as bad as 15 minutes in DAT (Doctor's Appointment Time), which could easily translate into 1 or 2 hours. You know what I mean.

Now mind you, I don't like being late. It's not that I thought that the infusion center nurses would give away my $3500 vial of Velcade or my overstuffed, window-side Lazy Patient recliner, but I like to be on time, nonetheless.

Perhaps I could've made a break for it and chanced that I would avoid the dynamite charges they were setting off, but if my timing went awry, consequences could have been dire. How would it look in the local paper?

'Local Kimberling City man injured in dynamite blast. Runs over flagman. Arrested by police. All because he couldn't follow the directions.'

My wife has been a much loved and respected teacher in our area for 16 years, and I couldn't see her career sullied by a husband forced to sport a scarlet 'BFD' on his overalls. BFD - bad directions follower - words of utter shame to a teacher. What did you think it meant? Totally rhetorical - don't answer that. BTW - I don't really wear overalls - in public, that is.

Perturbed as I was, I turned off the car, called the cancer center and then stepped out to enjoy the sunny, mid 70s day. Others followed suit. A little extra Vitamin D couldn't hurt anyone.

The gentleman in line behind me approached and asked for a 'light'. I'm not a smoker, but he seemed a bit agitated, so to ease his burden, I popped in my car's lighter and handed it to him. I did wonder why his all-the-bells-and-whistles Lexus didn't have a lighter. It probably has  satellite driven, ONStar waffle iron, though. Maybe he just wanted some fresh air as he smoked.

I shared what the flagman had said and that we should be on our way soon. I was startled when he practically screamed 'You don't get it! I just found out that I have cancer and I have to get to Springfield for a doctor's appointment! Come on!'

Ha! I wish I didn't 'get' what having cancer meant. And I've been 'getting' it, one way or the other, for nearly three years. Sadly, I also certainly understand his outburst.

'I'm sorry to hear that. I know that a cancer diagnosis is a scary, scary thing.'

'It's not just cancer. It is an incurable blood cancer called multiple myeloma. Very rare.' he practically whimpered.

I must have said 'what?' or 'what did you say?' out loud, because he repeated it again.

Now please understand, I don't have a myeloma bumper sticker on my car or a vanity license plate that reads 'BLD CNCR' or a scarlet 'MM' stitched on my overalls. And here is this guy, obviously in deep pain and fear, having recently found out that he has myeloma, and he's melting down in front of me.

I have been amazed how myeloma has been inserted into my life in the most curious ways. Here we go again! I took a quick breath and stuck out my hand.

'My name is Sean and I have myeloma, too. I was diagnosed nearly three years ago.'

He got a puzzled look on his face and said 'You have multiple myeloma?'

I'd like to believe that he was looking at me while thinking 'You mean that, after three years, I could still be dashing around on my own, a full head of hair, a smile on my face, ruggedly handsome good looks untouched...' In reality he was probably thinking 'I hope myeloma doesn't make me bald and fat and that I don't have to drive a mini-van like this nut-job.'

The fact was that this guy had been told that he had MM over the phone just a couple of days before and that he practically knew nothing about what he was facing ahead. He hadn't had THAT meeting yet with his doctor. Of course, he had jumped on the internet and was struck by words like 'incurable', 'bone destruction' and the other dark prognostications that cancer seemingly promises. A lot of us did that internet thing.

I had to decide. Do I just wish him well and change the subject or should I reach out to him?

'I have something for you.' I said calmly. I opened my minivan's cool electronic sliding door (take that you 4 standard door Lexus!), and pulled out a rolling black bag of... yep, ever present myeloma information. I felt like a salesman working a hot roadside prospect. I set aside materials from my doctors at UAMS in Little Rock, pamphlets from the Multiple Myeloma Research Foundation and from the International Myeloma Foundation.

I pulled out a couple of cold ones, Gatorade, that is, and swung open the hatchback on the van and we took a seat. Then I very slowly began my simple, well practiced, 4 minute Multiple Myeloma 101 Primer to give him some basic information. As I handed him the goodies, I encouraged him to visit the MMRF, IMF, the Myeloma Beacon and other points of interest detailing new treatments, major advances, and current MM news.

I said that from personal experience, things would be overwhelming for him, for his family and friends for awhile, but that with time, what seems like the end of the world, is but another chapter in his life. An unwelcomed, overly wordy, cloak-and-dagger chapter maybe , but just another important chapter of the many-to-come chapters in his personal story.

I told him that I didn't know where his particular MM journey would take him, but that my advice was to educate himself about the disease. Knowledge would give him a better sense of how the big and little pieces of the MM jigsaw puzzle fit together. I encouraged him to seek opinions from qualified myeloma specialists, to take things a day at a time, and to not give up on his dreams. Things may be different moving forward, but the world can still be a wonderful place. Somehow, at that moment, what I said didn't seem overly sentimental. It just seemed right.

He cried. I teared up. I gave a quick hug and asked him to keep in touch. We'd met for a reason.

It was then that the aggravated flagman saw two men hugging and walked over anyway. I prayed that he didn't have myeloma, too. I wouldn't have been able to handle the emotional strain or being even later for my appointment. Instead he said 'Let's get it going - you're holding us up!'  I also hoped that his kid wasn't one of my wife's students and that, seeing my picture on my wife's desk during a parent teacher conference, would say 'That's the guy hugging strange men over on Highway 13.'

I hopped into my minivan and headed to my chemotherapy appointment. My new MM friend drove forward into the rest of his life.

Thank you, God, for some of these unexpected, but fruitful delays that come our way. I always preach staying connected in the MM world, I'm glad that you force me into it sometimes. I was hoping, though, that could you get them to move a little faster on the road building project? And if you just have to send me a Lexus, I'd be okay with it! 

Peace to you out there in Myelomaville! Reach out and help somebody if you get a chance.   


Julie Shilane said...

Wow, that's an amazing story, Sean. It's wonderful that you were given the opportunity to help this man in his moment of need.

Sean Murray said...

Hi, Julie - my Myeloma Beacon mentor! We've talked about it before, but I run into MM patients/ caregivers in the quirkiest (is that a word?) ways. I guess however it happens, it's good to stay connected. I haven't heard back from him yet. Be good!

Mike said...

Well in a curious way MY life is so much richer since my diagnosis, even though I have been through quite a lot...... Can't explain properly what I mean.

Sean Murray said...

Mike, I do know what you mean! Getting up every day, fighting the fight, adapting to drastic changes in life perspective, feeling gratitude for the little things which may have escaped our view in the past, getting through the pain with resolve, facing fear head-on, and much more, can't help but offer us some positive benefit - as weird as this is. There is nothing noble or enriching in getting cancer. The richness that you speak of, comes in the next step that you take, and then the next. Has it been worth getting myeloma to also get a deeper understanding of life and how we fit in the universe? In some ways, I'm afraid that it is. Do I wish that I could have reached some of this deeper understanding without MM? You bet! Blessings and good health to you, Mike!

tim's wife said...

WOW if that is not the most spectacular example of divine intervention, I don't know what is. Very cool. God is working through you Sean, for sure. He is obviously guiding you and literally putting people in your path. One little traffic jam and a man goes from being bereft to blessed.

Dom and Nan said...

Sean... that story is too cool. It makes one reflect on a "higher power". So glad that you could guide a new MM patient.

We're with you, man! N & D

Sean Murray said...

Hi, Denise, Dom & Nan! Hope you're well & thanks for your thoughts.

Update: The gentleman from the Lexus sent me a msg that said that he's been diagnosed with MGUS, no overt symptoms, no treatment called for. He understands that not all patients move on to MM and he's breathing a lot easier today. In the scheme of things, the news isn't too bad at all. I hope that he can dodge the MM bullet.

The flagman remains on duty, and as far as I know, he doesn't have myeloma either!

Lileng said...

You have done good, right place at the right time! I would have like to meet someone like you when I was diagnosed. You are so humorous too. Reading this makes me smile more than once. May our LORD GOD bless you, bless you as you bless others and give them hope.