Swab Your Cheek, Save A Life

Sharing this for a friend and fellow Amyloidosis survivor--

WILL YOU MARROW MY DAUGHTER?

Tracy Jalbuena, age 43, wife , mother of two beautiful kids, ages 15 & 10 years of age, Emergency Room physician.

She has a very rare disease. No, let’s back up. Her dad has a very rare (9 in a million) serious disease called Primary Amyloidosis. Tracy has the same disease ... which is not hereditary. This set of circumstances has not been seen in first degree relatives before! The world over!

Now Tracy has Multiple Myeloma, a blood cancer and a cousin disease to Amyloidosis. But wait. She has a rare subset of Myeloma which is very aggressive. Both of these diseases arise from the bone marrow and are insidious and vicious.

Tracy urgently needs a stem cell transplant, formerly known as a bone marrow transplant. This will be her second one. The first was an “auto” with her own stem cells; the second will be an “allo” with donor cells.

Guess what? There is no donor! There is ONE person out of the millions listed in the National Marrow Registry who matches Tracy, but this individual is unavailable to donate for one year. Why a scarcity of donors? Tracy happens to be of Filipino and European-American ancestry and there are not enough Filipino American people who are aware of the need to donate life saving stem cells. There are not enough Asian donors in general to meet the needs of our diverse melting pot culture. A Caucasian person has a 93% chance of finding a match, while one of Asian or mixed Asian descent has only a 73% chance of successfully matching with a donor. A sibling has only 30% chance of matching and Tracy’s sibs did not.

Tracy’s work in her chosen field followed an extended medical school course and residency. For just three years, Dr. J. cared for patients in Camden, Maine and surrounds with great skill, professionalism and compassion. Then her career was interrupted. This is when Amyloidosis stepped into her life. And now Myeloma, too. The many years of study and preparation were more than the number of years that she practiced her profession in the ER. Oh, how she loves and misses her work and has earned the respect of patients and colleagues!

Her mom .. that’s me .. always knew that her firstborn child, a daughter, was a matchless, one-of-a-kinder. Tracy has a personality that stands out and shines brightly! Yet she seems to be in a class of her own when it comes to misfortune, too. The rarest of the rare diseases and no stem cell donor because of her uncommon ancestry.

In my mother’s heart, I know that a life saving donor can be found for my “matchless” daughter. You can help. You can help Tracy and you can help many others of any and all backgrounds by signing up to be a donor. It is easy to enroll with the National Marrow Registry. If you are 18-44 years of age, just go to BE THE MATCH (bethematch.org), sign up and receive a free cheek swab kit by mail. Parents of my generation, please, please encourage your young adult kids to sign up and be there for someone in need. Also, kindly share this message with family, friends, organizations, universities and especially in the Fil-Am community.

Be a matchmaker, a marrow mate, a life saver by giving something so precious that only YOU can give ~~ your healthy stem cells ~~ to another who needs it!!

Kathryn Jalbuena

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.

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. 

The Lurking Bear

I read an article last week, Life after near-death:  why surviving is only the beginning that detailed life after near death experiences.  It really resonated with me and made me reflect on how I'm doing after my stem cell transplant.  Now, maybe I wasn't at death's door but I was a lot closer than I've ever been, say maybe in death's zip code, just passin' through thank you very much.

The article starts out telling the story of Patricia and Trevor who were attacked by a bear while on a hike in Waterton Lakes National Park, Canada.  They were both seriously injured in the attack, requiring extended hospital stays and surgeries, and both were left disfigured.  The article details how Trevor rapidly moved on from the experience and looked to face life as a new man.  Patricia was very fearful and was never able to regain any peace after the attack.

The article describes Trevor's ability to repress his fears and use humor and logic may have helped his ability to move on--

Psychiatrist George Vaillant, in his Study Of Adult Development, found that this type of suppression was straightforward, practical, and it worked. "Of all the coping mechanisms," he wrote, "suppression alters the world the least and best accepts the terms life offers." Contrary to what many psychologists would have you believe, he says, simply suppressing a traumatic experience and getting on with business is "the defensive style most closely associated with successful adaptation". Trevor forced this hard-nosed logic to dominate over emotion, telling his wife, "We won't be attacked again, Trish. We're predisastered." (In quoting from the movie The World According To Garp, he was employing one of the best strategies for successful adaptation: humour.) In the midst of the attack, Trevor recalled feeling distant and philosophical about it. He had seen the bear attack Patricia and was under the impression that she had been killed. When the bear returned to attack Trevor for a second time, he later told his wife that he was convinced he'd die, but his only reaction was curiosity. He thought: "So this is how I die." Patricia's response to the bear was pure panic and terror.

I've used many of those techniques myself in trying to manage my reaction to my disease...my bear...with humor being my go-to response.   I love the predisastered quote. That sentiment is what drives my crazy behavior like not using sunscreen even though I've had five basal cell carcinomas removed and not caring about my cholesterol anymore.  Yeah, I'm living the wild life post-transplant.

I've always been one willing to fight and work hard when needed and I'm rarely intimidated.  I've always been that way, probably due to my brother's attempts to repress me, starting from the moment I was born, to hear my mom tell it. (Help, help, I'm being repressed!)  He taught me early how to stand up to an opponent that, based on appearances, you have no chance of beating.  Thanks Rob!

I really believe that attitude has helped me emotionally and physically.  I've met some patients who have become fearful and retreated from the world when diagnosed with AL Amyloidosis...reacting as Patricia did.  I've met some who have faced it as a big challenge they need to get through and approach it with confidence and optimism...reacting as Trevor did.  I wonder what causes the different reactions.

Patricia was never able to regain a joy in life because she was always afraid the bear was lurking to attack her again.  I can really relate to this feeling due to the relapse rates of AL and Multiple Myeloma.

I often say that AL may be incurable but neither is asthma or diabetes and I'm counting on being able to manage the disease well into my golden years.  The problem is, unlike AL and MM, asthma and diabetes are not continuously evolving in this sinister, genetic mutation arms race trying to gain an advantage.  The bear is out there and, at some point, he may regain his strength and grow stronger and more threatening.

Now, there's a word I see used quite often to describe the plasma cell clone that causes AL.  That word is "indolent".  In medical terms, indolent means 1) causing little pain 2) slow growing.  I knew when I first read that term I had a flashback to Jane Austen or the Bronte sisters or some other 19th century writer and I thought it was applied to a lazy, slovenly character, usually the sort of man that would not be an advantageous match for one of the female protagonists.

I found the character in Pride and Prejudice whom Jane Austen calls "indolent."  It's Mr. Hurst, who married Louisa Bingley.  If you've seen the BBC mini-series with Colin Firth (sigh) it's this guy.  That's how I picture the AL clone, lounging around in the parlor of my bone marrow, drinking wine and eating snacks, not really doing much.  More in line with the non-medical definition of indolent--averse to activity or showing an inclination to laziness.

If I have MM, well, lets just say I've never seen the term indolent used to describe the MM clone.  That guy seems a bit more busy and industrious than our Mr. Hurst up there.  I guess that's why the percentage of plasma cell clones in your bone marrow is part of the differential diagnosis between AL and MM...just how much work has that little clone been doing, knowing that if he's been busy before, he'll get busy again at some point after the transplant.

But, I won't really know what the clone is doing until that activity manifests itself in a relapse.  And I can be like Patricia afraid to move along the trail because I might encounter the bear.  Or I can be like Trevor and get on with my life.  I've said all along, the only thing I can control in my whole situation is the depth of my faith and the strength of my attitude.  If the bear is going to return, all my worry and fear until then will do nothing but keep me from fully enjoying the remission I currently have.  I'm on a trail in bear country, there's no changing that.  I can choose to curl up in a ball and wait in fear, or I can keep moving forward upon this path which God has placed me, enjoying the scenery and making progress in my life until the bear comes back.  I think I'll choose the latter.

In 1993, Amy and I went on a hiking, biking and rafting trip through Yellowstone. One of our guides had served as a bear naturalist with the US Fish and Wildlife Service.  She said that if you encounter a bear on the trail, you should never run.  You should stand up as tall as you can and wave your arms to try to make yourself appear as large as possible and stand your ground.  Now, she did admit the first time she encountered a bear, she turned and ran out of instinct.

I think that's a good metaphor for what I need to do if my bear returns--try to be as big as possible, emotionally and spiritually, and stand my ground.  I pray I'll have the grace to overcome the instinct to turn and run.

Pelotonia

As you can see by the banner on the right side of this blog, I'm riding in a fund-raising ride for cancer research in August called Pelotonia.  It's a big event here in Columbus.  It has raised almost $3 million so far this year and has raised over $61 million in its five years.  I've committed to ride 100 miles and raise $1,800 but because all of you are so generous, I've already raised $3,500.

The finish line for the ride will symbolize that I've left behind the impact of the disease and treatment, and that I've regained the physical performance status I had before I got sick.  I'll be riding with my husband Alan and my oncologist's nurse practitioner Tammy Lamb.  Those two have been key in getting me back to normal and I'm so happy I'll be able to cross that finish line with them.

The cool thing about Pelotonia is that every dollar donated to support a rider goes directly to cancer research at The James Cancer Hospital and Solove Research Center.  Local businesses and corporations fund all the administrative costs.  And the research they do there is really making progress.  Here's an article about a new pill developed at Ohio State that helps chronic lymphoctytic leukemia (http://www.nbcnews.com/health/cancer/new-pill-helps-leukemia-patients-live-longer-n118566)  Some of the foundational work for this promising new Multiple Myeloma treatment, Elotuzumab, (http://finance.yahoo.com/news/bristol-myers-squibb-abbvie-receive-120000568.html), was funded by Pelotonia and completed in the lab of one of the physician researchers who rides on the Ride MMORE team, Don Benson, MD, PhD  These are just two advancements coming out of Ohio State that I'm aware of in the last month.

I was fortunate enough to get Shelley Meyer, wife of Urban Meyer the football coach for Ohio State, to hold a fund-raising spin class for my peloton--my riding team--Ride MMORE on May 18.  That raised $1,000.  Shelley and I both tweeted about it a lot and one of the local sportscasters came out and did a story on it. Here's a link to the story http://vimeo.com/95812325 recorded off of my TV (apologies for the quality.)  Shelley was so supportive and gracious.

Yesterday, I went on a training ride with about 200 other Pelotonia participants.  Here's a picture as we were lining up to leave.

There were options for 19, 39 or 57 miles.  I wanted to do the 57 mile route as a prep for the 100 miles I'm riding in August.  I made arrangements to meet up with a woman, Tanya Knauss, who joins us for our Ride MMORE training rides on Tuesday evening.  Her husband of 8 years was 33 years old when he died from brain cancer in 2013.  Her spunk, spirit and sense of humor make her a blast to hang out with.  Tanya's sister and a few friends were with her at the start of the ride.  We took off a little bit after 8 and about 15 minutes into the ride, I was feeling really strong and just wanted to ride for speed to make myself stronger.  I've ridden close to 350 miles so far this year (not counting a few hours on the trainer in the basement in the winter) but I'm still nervous about riding the 100 miles on August 9.  I want to use the training rides I have to push myself so I'll be ready for that and can finish strong.  Between vacations and work travel, I only have 4 more weekends available for training.

So, I took off and rode what I'd call comfortably hard.  Turned out it was between 15-17mph and I was by myself for about 20 minutes (it seemed).  I came on a group of two men and one woman who looked about my age and were riding at about my pace so I thought I'd hang with them for a while.  It was nice to be in a group and the pace was good so I just tagged along.  We chit chatted a little bit while we rode along.

When we got to the first rest stop, we took off our helmets and sunglasses and started introducing ourselves.  Turns out I had crashed the group with the CEO of The James Cancer Center, Michael Caligiuri, MD.  Also riding with the group was Christine Scarcello, Director of Research Operations at The James.  I told them my story, incessantly praised the care I've received from Yvonne Efebera, MD and her team, and shared how thankful I am to have The James available locally to provide my care.

Now, those of you who know what a die-hard Gator I am and remember how poorly the Ohio State football and basketball fans treated me when I first moved up here will find my affection for Ohio State a bit surprising.  At some point in this fundraising adventure, I will be donning a cycling jersey with this Team Buckeye logo on it.  I now have lots of love and respect for Ohio State for creating such an incredible health system--The James Cancer Center, Dodd Hall Rehab Hospital, The Wexner Medical Center and all the physicians and care givers that I've encountered.  If you've been reading this blog for a while, you've seen my praise for these physicians--Dr. Efebera, Dr. Levin, Dr. Blum (the doctor who cared for me during most of my transplant), Dr. Parikh, Dr. Benson--and their teams...especially Tammy Lamb, Dr Efebara's nurse practitioner.  All incredibly smart and incredibly caring.

I rode most of the day with Christine and Giorgio whose last name, according to my internet stalking skills, is Bittoni.  We talked a lot about The James, cancer research, Pelotonia, our families and interests.  It was great to get to know some new folks who are committed to ending cancer by riding in Pelotonia.

If you haven't given to Pelotonia yet, consider a donation to my ride or to Alan's  You would be so impressed with the commitment of so many people to create a cancer free world.  I got to know three more of them on Saturday and rode with another couple hundred.  Watch this video and hear my riding partner from Saturday explain how the money is used and then please give a gift.

I'm raised $3,500 now.  $5,000 sounds like a nice, round financial finish to go with my 100 miles of riding.

How 'bout it?!?!?

Here's the link for those of you on mobile-- http://youtu.be/Y8t7y1umCNs

Unblinded with science

I've spent a lot of time since I was diagnosed trying to understand this disease from a purely intellectual perspective.  My general interest in science, two semesters of biology, one semester of anatomy, three semesters of chemistry, three years doing media relations for a teaching hospital and 15 years in the field of data and analytics give me enough of a base that I can understand a good majority of the articles and studies that I read.  Well, good majority for someone not in the science or healthcare field.  I'm still working to understand more...I remember b cells and t cells and plasma cells and cytokines and antibodies from my biology classes but it wasn't in as much depth and/or I didn't sufficiently synthesize the information to provide antyhing more than a shaky foundation upon which I can build a real understanding of my current disease process.

As my friend Judy (PhD in Statistics, analytics professional extraordinaire and breast cancer survivor)  said to me last fall when talking about this need to understand the disease and research, "Cancer is my hobby."  I read a lot and go on internet wanders to fill in the missing gaps in my understanding.  Whenever I've had the opportunity to validate my understanding with someone more knowledgable than me, I usually get it right...conceptually at least.

Two things crossed my media stream over the last few weeks that really smacked me in the face with why this disease, and most cancers, are so freaking hard to beat.  It would be reasonable to think that this realization would upset me and perhaps make me depressed but my need to understand is greater than my fear of my disease.  I was almost giddy when I figured this out.  I'm going to talk a little about what I've figured out and whenever I make what seems like a statement of scientific fact, just know there's an asterisk after it followed by "as far as I know" or "from what I understand".  I recognize I could be off on a lot of this.

Now, some of the information is related to Multiple Myeloma, not AL Amyloidosis and those of you who have been around a while remember my struggle about whether or not I have MM or Smoldering MM.  I discussed it in "The Real Slim Shady and Multiple Myeloma".  If I don't have MM or SMM, then I don't have cancer.  AL Amyloidosis is not cancer.  Which sorta pisses me off sometimes because when you say "cancer" people almost immediately understand this could be really bad.  You don't get that reaction when you say AL Amyloidosis, or "rare, incurable blood disorder that's fatal if left untreated."  AND, the 2 diseases basically start out the same with a plasma cell clone that goes haywire and starts causing problems.

(There's a whole class of diseases from those haywire plasma cells called "plasma cell dyscrasias".  Dyscrasia is just a fancy medical word for when something in your body doesn't work right.  I think I might start using dyscrasia as a euphemism for "effed up.")

The difference between MM and AL is in the mechanism of death.  Cancer causes death by the damage from the proliferation of the cancer cells.  In AL, we start off with the same process that might eventually develop into MM, but if it doesn't develop into MM, we die from the organ failure that's caused by the misfolding of a by-product of that plasma cell clone going haywire.  A technicality, if you ask me.

This story from the NPR show RadioLab about Famous Tumors really helped me understand the progression of cancer and the challenges in developing effective long-term treatments or cures.  Here's the relevant excerpt (about 12:40-15:30 in the show)--http://youtu.be/cVrNOkKoQW0  I like to listen to RadioLab or This American Life when I'm driving solo.  I listened to this a few weeks ago as I drove for an hour to meet Alan for the TOSRV ride.  As I listened to it, I wondered if this was the same mechanism that happens in multiple myeloma.  It would seem that it would be, but I'm never sure about anything with this crazy class of diseases.  I shared this clip with my 16-year-old daughter and she said, "It's just like Darwin's theory of natural selection."  Exactly...which takes me to this article that came in my email several days later from an Amyloid listserv to which I belong.

The article, "The impact of intra-clonal heterogeneity on the treatment of multiple myeloma" starts off with this--

 It is clear that cancers comprise a mixture of clones, a feature termed intra-clonal heterogeneity, that compete for spatial and nutritional resources in a fashion that leads to disease progression and therapy resistance. This process of competition resembles the schema proposed by Darwin to explain the origin of the species, and applying these evolutionary biology concepts to cancer has the potential to improve our treatment strategies.

Exactly the process described in the Radiolab show and identified by Claire.  This picture from the article effectively demonstrates the challenge in finding effective treatments because, as they noted in the RadioLab story,  "it sounds like cancer is always evolving to be more cancerous."  And if that's true for cancer cells that originate in something like lung tissue, it blows my mind to think of how quickly cells could evolve that start in your immune system.  I mean that system is programmed to produce cell differences so it can fight never before encountered pathogens. Hijack that system for evil purposes and you've got something pretty powerful. (Since originally writing this, I've learned that the "anatomical" perspective of cancer is outdated and that the future of cancer research and treatment is to approach it from a genomic and immunologic perspective.  So, I'm striking that statement because I'm not sure if it's accurate.  Seems like bad cancer is bad cancer regardless of where it manifests itself.)

Think about it...it would be hard enough to come up with an effective treatment that wiped out all the gray cells in the diagram above. That's the single cell theory in the RadioLab show (what they really describe in the RadioLab show would be more accurately described as the single type of cell theory.)   But, the gray cells evolve into gray cells with horizontal stripes and right angle stripes and those two evolve into gray cells with boxes and gray cells with arches.  As Dr. Hofmeister noted in the Imagine Mmore Multiple Myeloma Symposium, a cure will come when they can find the "queen termite" the original plasma cell clone that started all the mess.  When they can get rid of that, then all the copying and all the errors and mayhem that follow will cease.  And that is called a cure.

Now, for those of us with AL Amyloidosis, we have hope on two fronts.  Researchers can find and eliminate the queen termite.  OR, and this is a benefit from this disease not being a cancer, researchers can figure out how to keep the plasma cell by-product (free light chains) from mis-folding and clogging up our organs.  (Although I have heard there's a toxic effect from the elevated free light chains whether or not they mis-fold so keep looking for that queen termite, guys and gals.). There's an article starting on page 11 of the Boston University Medical Center magazine about research they're doing in that area.  http://www.bumc.bu.edu/comm/files/2014/04/Spring-2014.pdf

The Amyloidosis info starts on page 19.  David Seldin, MD, PhD, professor of medicine and microbiology and director of the Amyloidosis Center said in the article that even though different disease processes can produce mis-folded proteins that turn into amyloids, the amyloids all look identical microscopically so there must be something similar in the way that they are formed.  There's a whole group of diseases caused by mis-folded proteins: Alzheimer's, Parkinson's (my maternal grandmother had both of those), type 2 diabetes and Amyloidosis.  Isn't that great--I get to be in the plasma cell dyscrasia club AND the protein misfolding disorder club.  Actually, it is good because advances in treating either class of disorder might help in treating my disease.

So, while I could look at this newfound understanding as bad news, its really not new news,  I knew it was bad, I've seen pretty scary relapse numbers (~96%), the words from Dr. Hofmeister's database documentation ("Because nearly all amyloid and myeloma patients relapse and treatment is eventually unsuccessful...") is burned into my mind.  What I've learned through this isn't new info for me.  But, I do feel I've had a breakthrough in my understanding which will help me as I continue to learn about this to satisfy my intellectual curiosity and to feed my need to understand the world around me.  And it's confirmed my sense that I don't really need to worry about what those tater tots will do to my cholesterol nor be uber-diligent about the sunscreen.

I'm sure this learning process will go on as long as I'm able to do it.  I'm still working to get through the Immunology course from UMass that I've downloaded on iTunesU.  Who knows what mind-blowing understanding that might bring into my world.

Again, just another opportunity to trust God. I know He has a plan for me and I just need to be faithful and follow it.  Regardless of how wacky my plasma cells are or how poorly my proteins are folded. So I can learn about these topics, but I don't have to worry about them.

Ends of the Earth

Today is my husband's 60th birthday and I've been thinking a lot about our journey together over the last week.   In the midst of this, I've been obsessed with a song that I listen to whenever I can.  It's called "Ends of the Earth" by Lord Huron, an indie-folk band based in LA.  The song is about someone who wants to go explore, and conquer, unknown lands and he's asking someone if they would follow him to the ends of the earth.

The description of the journey struck me as a metaphor for how I see my health journey.  The song starts out with

Oh, there's a river that winds on forever
I'm gonna see where it leads
Oh, there's a mountain that no man has mounted
I'm gonna stand on the peak 

Out there's a land that time don't command
Wanna be the first to arrive
No time for ponderin' why I'm-a wanderin'
On while we're both still alive

It closes with this

I was a-ready to die for you, baby
Doesn't mean I'm ready to stay
What good is livin' a life you've been given
If all you do is stand in one place 

I'm on a river that winds on forever
Follow 'til I get where I'm goin'
Maybe I'm headin' to die but I'm still gonna try
I guess I'm goin' alone 

Here's the video..

(and the link for you mobile folks...http://youtu.be/O42EKFw99yQ)

As I said on Facebook, regardless of what this health journey brings, I know Alan will be with me...pushing me, pulling me, carrying me as needed...while we laugh together at every step along the way.  I know he'll follow me to the ends of the earth and I know I'm not going alone.

Happy Birthday, BPK!

Being a "Good Patient"

A blog post about the pressure to be a "good patient" came across my Twitter feed last week and I can relate to many of the scenarios the writer discusses.  The author, a fourth year medical student at Harvard, describes the characteristics of a "good patient" in her post "Good patients cover their emotional cracks"--

"There’s a lot of pressure to be the stereotypical “good patient”.  It doesn’t necessarily mean inviting the medical team to your house on Cape Cod for a traditional Russian dinner.  But there are certain characteristics I’ve noticed that my medical teams like: a “good attitude”, politeness, agreeability, compliance with treatment, and the ability to understand without asking too many questions.  Fall down on one or more of these and during a busy morning we may round on you last, or we won’t round on you as a team at all.  (Instead, you will have one-on-one conversations with your physicians throughout the day, so as to spare the members of the team not directly involved in your care the inconvenience of meeting you.)"

Now, I've never experienced the "medical shunning" she describes and I don't know if that's due to me, my team or some combination.  I do know that I've felt a pressure to fit into the system and manage my behavior accordingly.  I'm not sure if that pressure comes from observation or intuition but I certainly feel it.  Those who know me and have seen my usual attitude of "this is who I am and I don't really care what you think" would be surprised at the deference I show my medical team.

Don't get the idea that there's this huge observable difference between how I usually behave and how I behave with the medical team.  It's not like I'm generally a completely self-absorbed, inconsiderate a-hole (unless we start talking college sports and you're ragging on the Gators) and become the epitome of niceness with my medical team.   Most people generally consider me a pretty likable and caring person.  But within the medical system, there is an underlying tension to be a "good patient".  It's not overwhelming and definitely doesn't interfere with developing strong relationships but I know I feel it.

When diagnosed with an incurable disorder that will require intense management for the rest of your life, the need to have a strong relationship with your health care team increases exponentially.  Multiply that when it's a rare disease with few experts and the patient is a bit of a victim of supply and demand.   Again, whether real or perceived, I have that sense. Back to my Managerial Economics class, the exit costs in this patient-provider relationship are exceptionally high.  There's also the element of knowing that your life depends on the full engagement of your medical team.  Back to Managerial Economics, the incentive to have the team, especially the physicians, really, really, really like you is also really high.

As a patient, you hear this drumbeat about asking questions, understanding your disease and treatments, and being an active partner.  What's not understood is where the line is drawn between engaged patient and problem patient.  When do questions move from accepted need to know into the realm of questioning an expert's professional competence?  How is that "engaged patient" behavior practiced appropriately?  It's like you're traveling in a foreign land that you know has mores and behavioral standards but there's no tour book to tell you the words and gestures that will offend the locals.

The inextricableness of the patient-provider relationship found in my situation does have an up side.  The providers seem to have a real sense of caring that transcends what I would normally expect.  I understand this could happen routinely in situations with serious diseases.  I recognize that my sample size of one has limitations on how broadly it can be generalized.  But this sense has been confirmed by my husband who has spent the last 35 years of his life participating in and observing patient-provider relationships.

As we discussed this dynamic the other morning, he talked about a patient he had cared for the night before.  This gentleman had Castleman's Disease and had undergone a stem cell transplant seven years ago at the University of Arkansas and was still being followed by a hematology oncologist there.  Alan said that the cell phone number for that hem/onc was in the chart.

He talked about how impressed he's been with the strength of the patient-provider relationships that he's observed...not just with me but in general...within the Multiple Myeloma team at The James.  He said, "If you went up to the average Cardiothoracic Surgeon a month after he operated on you and said, "Hello" he'd give you a sideways glance that says, 'Should I KNOW you?!?!?'"

Granted, my time working at the teaching hospital that had 13 residency programs showed me that certain specialties had a higher ego quotient.  I can imagine that with the diseases as poorly understood, and with the high morbidity and relapse rates of plasma cell dyscrasias, the ego folks may shy away from this field.  If a 0.300 batting average gets you into the Baseball Hall of Fame, I'm thinking something similar will get you into the Plasma Cell Dyscrasia Hall of Fame, if one were to exist...which would be pretty weird.  (I mean, really, purple blobs and exposed epitopes are not all that interesting to the general public.  But, it wouldn't be any more weird than the Strollin' Colon, the giant inflatable colon you can walk through at the Mayo Clinic.)

I'd love to hear from other patients with serious, incurable diseases to see if they feel the same pressure.  I recognize that my ENTP personality type may play into this.  This description of the ENTP may describe some of what's happening--

As an ENTP, your primary mode of living is focused externally, where you take things in primarily via your intuition. Your secondary mode is internal, where you deal with things rationally and logically. 

With Extraverted Intuition dominating their personality, the ENTP's primary interest in life is understanding the world that they live in. They are constantly absorbing ideas and images about the situations they are presented in their lives. Using their intuition to process this information, they are usually extremely quick and accurate in their ability to size up a situation. With the exception of their ENFP cousin, the ENTP has a deeper understanding of their environment than any of the other types. 

So, maybe some of this is just me trying to understand this new world that I will live in for the rest of my life.  I'm guessing neither Fodor's nor Lonely Planet has published a tour book.  Maybe I should.