OK, so now what?

This post has been a long time coming.  I've been turning it over in my head for many, many months.  I'm not sure why I feel comfortable writing it now...maybe it's the approach of the holiday season, maybe it's the recent suicide of a former work colleague, maybe it's the knowledge that I'll have an empty nest in about 624 days (but who's counting), maybe it's the overwhelming sense of normalcy these days, maybe it's a combination of all of those.

When people ask me how I'm doing these days, or more specifically how my health is, I usually reply with, "It's pretty much back to normal.  I'm in remission, my damaged organs are recovering and I just have follow-up care until something changes."  And that's true physically.  Emotionally, it's a bit of a different story.

Emotionally, I look around and think, "OK, so now what?"  Many people fighting serious illnesses talk/write about "not being defined by their disease" but sometimes I think maybe I was defined by my fight.  Now that this round is over...OK, so now what?  I look around and see how much of my life these last two years has been focused on my health.  After that, it's been about supporting Claire in her school and sports activities.  Knowing the first is gone and the second soon will be..OK, so now what?

I don't really have any buddies in this area.   My two best friends are 350 and 2,000 miles away.  Yes, I have a lot of friends in this area and a really wide social circle.  But that expanse doesn't mean that I don't miss having a few close buddies.  You know...the ones who you know that every Friday night, you'll head out to have wings or who call you and say, "I'm watching a movie tonight,  Grab some wine and come over".  It's pretty much the same situation at work.  I'm just missing those 2-3 "go to" friends that you know if they're doing something, you're going to be a part of it.

I found that during my illness and recovery, I was suspended between these two poles in sort of a no-man's land.  I was the center of attention but on the periphery of action and interaction.  As I recovered, I got a lot of, "We need to catch up,  we'll have you over for dinner" but the invites never came.  Or, "We had this get together and we were going to invite you but we weren't sure if you were up to it."

Things weren't all that great before I got sick.  I was wrapped up in work and Claire's activities.  (Or maybe I was/am an a-hole.) Those things aren't as consuming as they once were.  I guess my experience has made me see some deficiencies in my current life.  Just like when I first got out of the hospital and spent a lot of time looking around the house at things that needed to be improved here, creating a lengthy "honey do" list, I've been developing my "Kathy do" list.  Unfortunately, there's not an entire industry with multiple store chains and TV networks devoted to my fixer upper.

There are times when I think I'm being petty and ungrateful.  I consider folks with my disease who would love to have this set of problems and I remind myself how fortunate I am to be alive and living a normal life.  But then I think, "Aren't these normal expectations all part of being normal?"  Except things aren't normal.

As you can see, I've got a lot to figure out.  Do I move back to Florida where I think I've got some buddies?  Do I try to build something here I've never really had in my almost 9 years of living here and if so, how?  Do I reset my expectations?  It's like an episode of "Love It or List It" for my social life.

I do know that I'll continue to try to get up every day knowing that if I'm alive and not incapacitated with illness or treatment, there's something God wants me to do.  That's where my focus has been and where it will continue to be.  Like so many challenges throughout this journey, I just need to do what God puts in front of me and trust that He'll work the rest of it out in just the right way, at just the right time.

The "13 Wardrobe"

I finally had a chance to get my winter clothes out and put my summer and fall clothes away.  I decided it would be a good time to go through my clothes and purge things I didn't wear anymore.

I usually follow the rule of "if I haven't worn it in a year, get rid of it."  That works great....unless you have a two year period during which your normal wardrobe doesn't fit, as I have.  During the winter of 2013, I was so bloated that I had to wear really blousy shirts and elastic waist pants.  While I was better in the winter of 2014, I still couldn't wear much of my normal wardrobe.

So, now it's been almost three years since I bought any "normal" clothes so the nice work pants that I do have are waaaaaaay out of style.  I had to get rid of most of my "normal" winter work pants.  Yes, it's an excuse to go shopping but I don't like to go shopping, especially for work clothes, and I don't really want to spend money on that now, anyway.

I also got rid of many of the blousy shirts and elastic waist pants that were the staple of my wardrobe from May 2013-April 2014.  When I would show something to Alan that I was getting rid of, he'd ask, "Is that a 13?" ie did you buy that in 2013.  If I said, "Yes", he'd say "pitch it."

I do get the feeling that I'm tempting fate when I get rid of those clothes...like I should keep them around in case I need them again. And if I keep them, I won't need them but if I get rid of them....Logic tells me that I shouldn't live my life preparing to relapse but being a Gator fan has made me pretty superstitious.  I've been banished and have banished others to inconvenient locations during Gator viewing parties because the team started doing well.

Logic did prevail and I did get rid of them.  I hope my co-workers will understand if they see the same pants or skirt a bit too regularly since the wardrobe is really depleted.  I figure if the male anchor on the Australian Today show can wear the same suit for a year ( read the story here ), I'll be OK if I wear a pair of pants more often than I'd like.  I promise you they'll be clean.

My Latest Adventure--Cyclocross

I've started competing in the cycling discipline called Cyclocross.  Wikipedia says-

Cyclo-cross (sometimes cyclocross, CX, CCX, cyclo-X or 'cross) is a form of bicycle racing. Races typically take place in the autumn and winter (the international or "World Cup" season is October–February), and consist of many laps of a short (2.5–3.5  km or 1.5–2  mile) course featuring pavement, wooded trails, grass, steep hills and obstacles requiring the rider to quickly dismount, carry the bike while navigating the obstruction and remount.

I'd seen Cyclocross races on TV, and Alan and Sean went to the National Championships held in Louisville, KY a few years ago.  I like the athleticism it adds to cycling and since it requires strong technique and a dose of bike smarts, I believe it might be one of those sports in which age and treachery can overcome youth and skill...just like my previous favored sports endeavor, beach volleyball.

I attended a day long clinic in August put on by a local women's racing group, Lady Gnar Shredders I was hooked.  It was so much fun and the people are so nice.  I've competed in three races so far.  My primary goal is to not DNF (did not finish)--that would most likely be due to a crash and that would be no bueno.  I also try to not FDFL (finish dead f--ing last).  I've met my goal in all the races.  I got 3rd place out of 9 racers in the first time racers category at my first race.  I finished 21 out of  31 racers in my second race and 7 out of 9 racers in my last race.  I'm still figuring out the best technique, riding really tentatively because I don't want to hurt myself, and thinking way too much to be good but it's fun, the people are nice and it's starting to feel more natural.

It is fun to beat people much younger than me plus I'm pretty sure I've gotten first place in the stem cell transplant survivors category at all my races.  And, I am the number one ranked female cyclocross racer in the state of Ohio for my age....of course, there's only 2 of us.  ;)  In the ranking report on USA cycling, I'm at about the 65th percentile in the different ranking categories they track, . Not too bad for this old dog who's learning new tricks after 3 races.

Here's a video of the elite race at my second race.  Same course, we're just not as fast.

http://dirtwire.tv/2014/10/ovcx-3-gun-club-elite-women/

And here are some pictures from my last race--

In my first race, I was on the grass and going through a hairpin turn a bit too fast when my bike slipped out from underneath me and I landed on my hip.  It took about 5 days for the bruise to show and more than 3 weeks for it to go away.  When I was at my checkup with my oncologist this week, they asked the standard question "Have you had any falls since you're last visit?"  I replied, "No", figuring the type of fall I had isn't really the kind they're worried about.

It's so nice to be able to go out and do something new.  This is so much fun!

Hair Regrowth

I put this collage together to share on the Bone Marrow Transplant Facebook page when someone asked about hair regrowth.  Mine came in curly but got back to normal after about a year. And yes, I keep it really short because it's so easy and who wants to spend time on hair when there's fun things to do like ride cyclocross races or watch Outlander or photograph Claire's sports or so many other things.

  

The "C" Word

Every description of Amyloidosis includes the word "incurable" very early in it's verbiage.  The reality of the condition being incurable is reinforced as we patients discuss our disease and treatments.  I've seen people on line who are usually pretty low-key and easy going react rather vigorously when someone says they might be cured.  "No," we're told, "it's incurable.  The best you can hope for is a durable, long-term remission."

I've met personally or on line folks who have relapsed two years after their stem cell transplant and some who are still in remission 20 years after their transplant.  The disease is so poorly understood that the physicians and researchers can't really predict into which group any individual patient might fall.

The hidden message always seems to be "don't be too hopeful, it will most likely come back", 96% of the time according to one article I read.  As Dr. Hofmeister states in his data registry and sample resource clinical trial in which I'm enrolled, "Because nearly all myeloma and amyloid patients relapse and treatment is eventually unsuccessful...".  Unfortunately, we Amyloidosis patients seem to feel an obligation to make sure one another remember that.

Today, while I was working on a project for an Amyloidosis group, I was reviewing some of the medical literature on Amyloidosis and Multiple Myeloma that I've saved on my computer.  Only 77 documents amounting to about 697,000 words, according to my calculations.  Those aren't all the ones I've READ, just the ones I wanted to save for future reference.

I was a little surprised when I came across this statement from an article published in the journal of the American Society of Hematology in June 2013 by researchers at the two premier Amyloidosis research centers in Europe (Systemic light chain amyloidosis: an update for treating physicians)

Novel agents and therapeutic approaches, such as those targeting amyloid deposits, are now under development and, hopefully in the near future, will be used synergistically to give a concrete hope of curing AL amyloidosis.

It's one of the few times I've seen the word "cure" applied to Amyloidosis by researchers.  It is considered a possibility in the near future.  The key is to stick around long enough and be healthy enough to benefit from it.

In the spring a group of us had the opportunity to tour the lab of Don Benson Jr., MD, PhD  one of the Multiple Myeloma researchers at The James.  It was really inspiring to hear about the progress that was being made and meet some of the folks on the front lines in the fight to cure cancer.  After the tour, we made a donation to Dr. Benson's Pelotonia ride as a thank you.  He told us later that he had just come back to his office after losing two patients when he saw the notification of our donation.

As I drove home after the tour, the song "Not the Same" by Ben Folds came up on my playlist.  I rewrote the chorus to this--

You see us drop like flies from our bright sunny skies
We come knocking at your door, we’ve got tears in our eyes
We need that cure quick and we’re hanging on, we’re hanging on...
For it

(You can read the entire re-write here-- https://docs.google.com/document/d/1k7WpxLEoimdZsYeGxBISYAvEVOUNMh4Zp24tPP1bOE4/edit?usp=sharing )

So, as a patient, that's really the goal...to hang on long enough to be here WHEN the cure comes.

Limits

Today, I'm following along as a friend competes in an Ironman race in Louisville.  It reminded me of this Radiolab episode called "Limits" http://www.radiolab.org/story/91709-limits/ that I listened to several years ago at the recommendation of my son-in-law, Sean.  It talks about the limits of physical endurance and mental capacity.

Sean has always been great at finding media that I would like...this Radiolab episode, the Tig Nataro standup set, my new favorite artist Jason Isbell.  I've talked a lot about the role of Al, Amy and Claire in my recovery but Sean was there every step of the way doing what he does best...being a strong and quiet force contributing when he could and supporting others, like Amy, so they could as well.

The first 10 minutes of the show talk about Julie Moss' Ironman race in 1982.  Long story short, she wasn't really prepared for the race but ended up leading the race and became attached to the idea of winning.  She became severely dehydrated, couldn't even stand anymore and ended up crawling the last 30 yards.   She kept going even after seeing a competitor pass her, knowing that she wouldn't win but still wanting to finish. You can watch the painful and inspiring footage here http://youtu.be/VbWsQMabczM

Here is an excerpt from her Radiolab interview as she described her feelings after she fell--

"My life was going to be different; I mean I felt my life changing.  I made a deal with myself, a deal was struck.  And I don’t care if it hurts, I don’t care if it’s messy, I don’t care how it looks, I would finish. I would finish……It was a pivotal moment in my life. That voice, that I hadn’t ever called upon that just said, 'Keep moving forward'.” 

 I thought about this story a lot during my treatment and recovery.  Last night, at a fundraising event to fight brain cancer, I was talking to some folks I'd just met about my journey.  Like many people who hear my story, one of them wondered what it was that kept me going, that gave me the strength to get through treatment and have such a strong recovery.

I don't know everything, but one thing I do know is that, like Julie Moss, I found that voice.  Pretty much from the beginning, it was there.  I think knowing about stories like Julie's and others with inspiring stories about overcoming physical limitations gave me an idea of the possible.  And, perhaps, my competitive nature told me, if they can do THAT, I can do THIS.

Sean and Amy kept reminding me of the movie "Meet The Robinsons" with the theme of Keep Moving Forward.  http://youtu.be/FeBLi81708U  I even watched it in the hospital.

As you can see, I heard that message "Keep moving forward" a lot....so that's what I did.

(To my cycling buddies, if you have time, listen to that entire Radiolab episode.  The part about the Ride Across America race that starts at about 16:30 is pretty inspiring, funny and crazy.)

Pelotonia--180 miles

As many of you know, I rode in Pelotonia, a cancer fundraising bike ride, on August 9-10.  I had originally signed up to ride 100 miles but after some prodding (nagging) from my husband I decided to do the longest ride, 180 miles over 2 days.  It was an amazing experience...more than 7,000 cyclists, hundreds of volunteers including paramedics, physical therapists, police officers and thousands of supporters...all focused on our One Goal ==> End Cancer.

Of course there were people lining the streets in downtown Columbus at the start but there were people cheering us on and encouraging us throughout the route.  There were many, many people throughout the ride holding signs, shouting encouragement and always saying, "Thank you for riding." ...even in some pretty remote locations.  The volunteers always thanked us and of course we thanked them back since they had the food :) and the police officers manning the intersections always thanked us, too.

One small town east of here, Granville, had hundreds (thousands?) of people turn out, lining some sections of the course 2-3 people deep.  It came when we were 60 miles in, starting to feel tired yet knowing the worst was still ahead of us.  What an adrenaline boost that was!  I started tearing up as I rode into the town seeing the support and was a boo-hooing mess as I passed through.

It was a physical manifestation of an image I held on to during some really dark nights in the hospital....all my family and friends surrounding me and cheering me on....that's what I saw and felt as I rode through Granville and many other times during the ride.  Here are a few good pictures of the scene in Granville.

Most of the day Saturday I rode with my husband Al and Tammy, my oncologist's nurse practitioner.  Although Tammy was riding really strong and I was having some hip and foot issues so she dropped us, well dropped me, like a used Kleenex.  But we would meet up at the rest stops and take off together.

Crossing the 100-mile finish line alongside Alan and Tammy is a feeling I will never forget.  Those two are the people most responsible for getting me to the mental, emotional and physical condition to successfully complete that ride.  My training and toughness may have been what got me to the finish line, those two got me to the starting line.

After we got off our bikes, we all exchanged congratulatory hugs and I just broke down sobbing on Tammy's shoulder.  I spent a lot of time on the road thinking about these last 18 months...not so much the bad stuff, just a little bit of that.  But I thought so much about the love and support that had gotten me to that finish line and I was just overwhelmed by it all.  

Alan and Tammy weren't riding the second day so we ate dinner, they left, I got a massage and some first aid for my foot, and went to sleep in my dorm room.  My roommate was a lovely young lady who is majoring Marketing and Finance at OSU who will be a senior this year.  

On Sunday, we lined up to start at 7am on a cool foggy morning.

As you can vaguely see in the above photo, we started riding uphill pretty quickly and we continued going uphill for another 20 or so miles.  Ugh!

Since Tammy and Al weren't riding Sunday, I rode with some folks I met on a training ride that I wrote about here--Pelotonia.  I was having issues with my foot and it really slowed me down on any sort of hill, of which there were many.  So I would take off with the group but would get dropped pretty quickly.  That gave me a lot of time to ride by myself.  It was an interesting metaphor for how my fight went, and how it might go in the future.  Sometimes, your loved ones are fighting with you, side by side but there are also times when you're fighting alone.

The other interesting contrast on the ride is that my primary riding partner on Sunday was Chris Scarcello, Director of Research Operations at The James, the cancer hospital where I had my treatment.  She is the sister of Michael Caligiuri, MD, the CEO of The James.  Dr. Caligiuri rode with us for extended periods of time.  It was nice to see him thank every rider he passed.  Chris' two daughters, Liz and Gina, and friend Julie also rode in the group.  So, on Saturday, I rode with the people personally responsible for my recovery and on Sunday, I rode with some of the people corporately responsible for my recovery.

I crossed the finish line with their group at about 2PM.  Waiting at the finish line were Al, Claire, my niece Samantha, brother in law David, nephew Max, Tammy, and a fellow with whom I work, Greg, and his family.  It was such a feeling of love and support and I was grateful that they were there.

Here's a link to all my pictures from Pelotonia-- Kathy's Pelotonia Album

On Monday, as I was still basking in the post-Pelotonia glow, I had to grab a late lunch in the 30-minute window between meetings after our cafeteria had closed. As I ate my lunch at a sidewalk table near my building, a 20-ish year old man approached me with a story about needing money to get out of a parking garage because he lost his ticket. I sensed it was a scam but told him I'd give him money if he told me his story and he listened to mine.

He told me he's a recovering heroin addict
he wants to attend OSU
he had a dope sick, jail house encounter with God that powers his recovery
that he's scared he will relapse
that it hurts to get shot.
I showed him a picture of me last year
told him about my transplant
shared the grim prognosis and relapse statistics for my disease even with the transplant
told him there was nothing I could do to control my relapse, that it was a roll of the dice with the odds set by the biology of my plasma cells.
I told him that over the weekend more than 7,000 people rode between 25 and 180 miles and thousands of others volunteered to try to change those odds for me and for millions like me.
I asked him that, when he's faced with a choice of whether or not to use again, to think about the gift of life God had given him and to make a choice that honored that gift...because there's millions who don't have a choice as to whether we relapse but would do anything to have one.
I handed him $35, gave him my phone number and told him to call me if he needed anything, and that I'd pray for him.
It may not have helped him, but as those encounters usually do, it really helped me.

I will ride in every Pelotonia for as long as I'm able.  Yes, it feels great to raise money for cancer research and to complete a challenging physical activity.  But what Pelotonia is for me, as I ride through the streets filled with supporters cheering me on, is a physical manifestation of the love and support I felt during my illness, treatment and recovery that carries over once I get off of the bike.

I'd ride a lot longer than 180 miles to be able to feel that every year.