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.

The Ride as Sacrament

On Saturday, I will start a 2-day, 180-mile ride to raise money for cancer research at The James, the cancer center where I've received all my treatment and where my friend, John Rucker, is currently receiving his second stem cell transplant for Multiple Myeloma.

This graphic captures one of the main reasons I'm riding (beyond the fundraising)....to prove to myself, my loved ones, the world and this disease that I am walking, or rather, riding away from the negative effects of the disease and treatment.  It will be a demonstration that I can leave behind the negative physical effects but will also be a time for me to leave behind the negative emotional and mental effects, as well.

In my church, a sacrament (baptism, wedding, funeral), is defined as "an outward and visible sign of an inward and spiritual grace."  Those 180-miles will be that outward sign of my re-birth, the final shedding of the chrysalis of these last 18 months...10 miles for every month.

Seems fitting.

Final results of Gist Week

Hematologist results are all good!! The one key number--kappa free light chains aka the dirty bastard--is still as low as it's ever been. Normal is 3.3-19.4 and my lab results show less than 3.3...still at that level 3 months after stopping chemo. It was 79 when I was diagnosed. WooHooo! Thanks for the prayers and encouragement one and all, and thank you God for all the blessings you've given me throughout this journey. Now I can not think about this for a few months.

So begins KATE (Kat After Transplant Era), Cycle 6. It's 6 because that's how many oncology appointments I've had. With this, you kinda live in little chunks from oncology appointment to oncology appointment. That phrase "new lease on life" is real. It feels like my contract has been extended for another 3 months. Here's the closing song for Gist Week. It's about trying not to think about it for the next 3 months. Roll credits. 

http://youtu.be/LHJhyrrUTgc

Results of Gist Week--Episode 1

Part 1) "Live and Let Liver" Liver gist says things are great and I'm "the example of recovery from this disease." We joked around about me being able to die from something else and he said that would be great unless I get killed by a pick-up truck while I'm out cycling in the near future. If that happened, he said he'd stand on my grave shaking his fist saying, "You wasted all of this!" Sounds pretty morbid but it was really funny at the time.
 
Part 2) "Kidney Time" Kidney gist agrees about how well I'm doing and said I could cut my last medication dose in half. If I don't have any issues with fluid from that after a few weeks, I can discontinue it. The recovery of my protein loss through my kidneys has slowed down but is still improving and may continue improving for another two years. Last test, in March I was improving by more than 6 grams per day and now I'm down to a little over 4 per day. But, as my phlebotomy buddy and I say, "Slo motion better than no motion." AAAAND...I see the kidney gist one more time in 6 months and if things are still doing well, I won't have to have regular visits with him so I'm not only reducing the number of medications, I'll be reducing the number of physicians. Love ya, Dr. Parikh but it's time for me to move on. Really, it's me, not you.
 
So, great news across the board today but tomorrow is the big one! C'mon plasma cells, don't let me down!

The Gist of What I'm Sayin'--Part 1

Tonight, I'm talking about the gists...both kinds in my vernacular.  The first is how I refer to my medical specialists--gastroenteroloGIST, nephroloGIST and oncoloGIST.   That's the subject for part 1.  In part 2, I'll get to the gist that refers to "the substance or essence; the main point."

This week is Gist Week in my medical schedule because I have appointments with all my main peeps--liver gist, kidney gist and cancer gist. Now, you may think Gist Week is cool, maybe even like Shark Week on Discovery Channel.  The only similarity they share is that they both involve lots of blood---mine from a phlebotomist stick and not a shark bite, going into a tube and not the ocean.  That's about the extent of the excitement in my week.  But I do get to see my buddies at the phlebotomy lab at Stoneridge.  As I said on Facebook after my last visit, it's nice when the 60-year-old phlebotomist and I can quote the same lyrics from Common simultaneously--"Slo motion better than no motion."  :D

While having all of these the same week really messes up my work calendar and probably causes my admin to direct some not so nice words my way (even more than usual), it's nice to get them all done within a few days of each other.  It just condenses the time I have to think about my disease and lab values, and gives me more time to forget I'm dealing with this.

This will be an important diagnostic week for me for several reasons.  I'll go through them gist by gist.

Liver gist--I'm hoping my liver has softened and gotten smaller so he doesn't make the "this thing is really effed up" face he usually does when examining my liver, if that's even a face a 70ish year old Harvard educated physician could make.  I know my liver function tests are all normal because I got a sneak peek before I went on vacation.  I wasn't feeling well and Tammy wanted to check a few key things before I left.  Thumbs up!

Kidney gist--I'm hoping the protein level in my urine is low enough that he'll take me off my last prescription medication.  One little pill twice a day may not seem like much, especially considering what I've been through, but for someone as anti-medicine as me, it's just a daily reminder that I have Amyloidosis and it would be great to be free from that.  If the protein level has to be normal to take me off of it, it probably ain't happening this time. According to my spreadsheet then it won't be until September 19.  This assumes the recovery is linear (which it probably isn't damn you diminishing returns) even though it looks like this.

Here's the waterfall chart for my protein levels showing how much it's come down since diagnosis....yeah, it's nerdy but I think it's cool....so it is....

Cancer gist--The other gists are on Wednesday and Dr. Efebera is on Thursday.  Before my appointment with her, I have an ultrasound to measure my liver span.  It was 24cm last summer and in January it was 18.6cm.  I don't have a big enough data set to have any idea what it might be this time.  Based on how it feels, it's down a lot...I can sleep on my stomach again, YAY!!  I'm hoping it's below 13cm but anything below 15cm will be a win in my book.

Now, the real magic numbers with Dr. E are my free light chains.  Those are the bad proteins produced by the aberrant plasma cell clone who caused all the problems  Those are the guys who clump up and form the amyloids that clog things up...and, even on their own before they clump, they're toxic enough to cause damage from the oligmers.  Fun stuff, eh.

The test this week will be the first real test of how my bone marrow is working since the transplant.  Last September, I started the oral chemo, Revlimid, to "clean up anything that was left after the transplant", according to Dr. E.  It worked so well that the bad free light chains, the kappas, just showed up in April as "< 0.33", the lower end of normal.

And, just to be sure, I did a 3-sigma control chart based on all my normal values and have this.  Looks like the system has been behaving OK up to this point.

This week will be the first time to check and see if the free light chain process can be in control without any pharmaceutical intervention.  The magic number there is less than 1.94 mg/dl but I'm OK as long as it's still within the control limits...one point does not a trend make.  (Yeah, I can say that now....hopefully I'll have the strength of spirit to be OK if it is above normal.)

So, there's my Gist Week.  I'll get to the other gist in a later post.  As I said last summer, I feel like I can live more boldly, and maybe more honestly now.  I've got a few things I'm struggling with and I need to come clean.

But as long as the gists above say everything is ok, I can handle the other one.

The Pressure to Parent

Probably the worst part about receiving the diagnosis of a terminal, life shortening disease is the pressure I feel to try to be the best, most effective parent I can to my two daughters.  Yes, Amy is 28 and Claire is almost 17 and a lot of the "heavy-duty" stuff is done but I feel they're both getting to the ages where I can help them the most.

I've helped and mentored a number of young women in my career and have always enjoyed it and felt like I'm pretty good at helping them figure out when to make a job change, have a tough conversation productively, improve work relationships, balance work and family...topics like that.  From what my friends and "mentees" tell me, I have a really good ability to frame up the choices people are facing and organize the factors they should consider so they can make an informed decision.

Just last week I had such a rewarding phone call with a former co-worker who is considering a job change and we talked through the pros and cons, how it fit into her longer term career and family goals, and how and when she should share with her boss.  I really get a lot of satisfaction from those conversations and see it as a way I can use my analytical mind, that can drive people who know me well crazy at times, to help others.

I've had the opportunity to do this with Amy some over the last few years as she's started her career and think I've helped her out with some sticky situations at work and the impact they've had at home.  It's been great to be able to invest that skill in the success and happiness of one of my children.

Claire is at that age where parents are not at the top of the list of sources for good advice.  Plus, she's always needed to have a clear view into the direct return on engaging in any activity.  I've had the chance to help her figure out how to be a better teammate on her sports teams and productively deal with personalities that she finds challenging (ie irritating...and that's a lot of personalities.  She doesn't suffer fools easily.)  But there's so much more I feel I need to teach her about how to be a happy, balanced woman and it pisses me off that this disease might take that opportunity away.

Alan and I have been working almost continuously with Claire on the need to do the things people in authority over her expect of her, even if she doesn't see the benefit.  Right now, those things are Alan and I wanting her to be better organized, manage her time better...just develop the habits and practices that help her keep up with the increasing demands of college and a career.  She's been pretty resistant because she doesn't see how it will help her now.

She and I had a great discussion about her resistance last night.  I told her that when we tell her to do things, she needs to trust that we have her best interests at heart.  I pointed out she wants us to trust her in situations where we don't have all the details we'd like and we are pretty accommodating of that.  I told her she shows her respect and trust of us when she does the things we ask even if she doesn't clearly see or believe there will be a benefit.

It was a great discussion.  She never disagreed or got defensive and could clearly see the validity in my perspective.  She's got a tough outer shell that rejects anything weak or irrelevant and I've gotten pretty effective at getting past it.

Not having THESE ^^ moments with my daughters is what pisses me off, and frankly scares me the most, about the single-digit lifespan that many patients with this disease experience.  Now, I've met folks who are 20 years out from their diagnosis, too, but there's no way of knowing where I'll fall on the bell curve--short tail, middle or long tail.  I cried a lot while I pondered this, not out of fear or anger but just sadness over what this might mean.

This insecurity about being around to guide them causes me to over-react when I think something is interfering with my ability to play an active role in guiding them.  I'm getting better but it's somewhat insidious and many times I only recognize it in retrospect.  

The bottom line is that I need to trust God and do my best to stay in the moment without worrying about what I expected in the past or what the future might bring.  That living in the moment, the "I AM", seems to be the foundation of so many of the world's religions.  I saw this on the blog of a fellow cancer patient who was talking about the struggle to deal with the daily fear this diagnosis brings.  She shared this photo.

Daily, I read the "Litany and Novenas to Saint Faustina" that were given to me by John Reiner of Oakland Nursery last summer.  He said it was part of the regimen he used to beat stage IV colon cancer that had metastasized to his liver.  http://www.dispatch.com/content/stories/local/2012/10/28/to-your-health/nutrition-plays-role-in-prevention-treatment.html  I'm doing great at following his spiritual instruction, I'm still not as good at following his nutritional advice that he shared here  Nutrition Confusion but I'm trying. 

Last night, it said, "Saint Faustina, obtain for me the grace of a childlike trust in the Lord God who can do all things.  He is Wisdom itself and loves with an everlasting love."

So, whether it's the guidance of The Bible, Taoism, Saint Faustina, or a modified version of what I shared with Claire, I need to continue to trust that God has my best interests at heart and live in the moment.

THAT is the only way I know for me to have a happy life...regardless of how long that life is.