Hey look it's me!

The winter newsletter of the Amyloidosis Foundation featured my story.

You can read it here.  https://origin.library.constantcontact.com/download/get/file/1103817697559-49/Dec_2014_newsletterfinal.pdf

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.