Life Lately

Ever since we returned home from vacation, life has been out-of-control crazy busy.  It's all good stuff (minus the two days a week of chemo), but we've all been running in different directions, trying to get to baseball games, riding lessons, gymnastics, piano lessons, and everything else in between.  It's hard to believe that April is almost over!

Here's a little bit of what's been going on...

Baseball

If you can't find us between now and late May, chances are that we're at the ball field.  The boys have three games a week (Philip is coaching Will's team), so the girls and I are getting good at making ourselves comfortable on the bleachers, cheering on our Crimson Knights.  I plan to take some pictures at each game, but always forget.  I have a few not-so-great ones of Will on the pitching mound.  He's doing great this year--he's had some power hits this past week and some great pitching innings.  The Knights don't have a stellar record right this second, but the season is young.

First Grade Music

Anna's class had their music program the other night.  It's always so fun to see the entire class perform.  No big surprise that she's among the tallest in her class and got to stand on the highest riser. And the best part?  Ice cream with her BFFs after the concert.

Ready to sign their hearts out.

Dessert with Haley and Gracie.

Doctors

We seem to be plagued with some mystery ailments around here lately and have been spending lots of time in doctors' offices (in addition to my multiple weekly appointments).  Poor Anna has been struggling with some low-energy symptoms and had to go through a very not-so-fun day of tests.  Lots of blood draws, and a couple of them didn't go so well.  Poor thing.  Hard for this mama to watch.  We're still trying to chase down the culprit and get her feeling like herself again.  And Olivia is battling fairly frequent migraines (a problem she shares with her sister and her Nana), so we're working on finding the right medication for her.  Hopefully both will get some relief soon.

Trying to stay entertained while feeling not-so-good during a five-hour day of testing.  She was a trooper!

A Girl and Her Horse

Olivia takes riding lessons each week with her horse (not ours--she gets to borrow him every week).  She's been riding a beautiful horse named Tristan for several months, but tonight she graduated to a bigger horse, Premoe.  She started riding almost a year ago and absolutely loves it.  It's so much fun to see the progress she's making.  I think her weekly riding time is very therapeutic for her.  I was never a big horse person growing up (unlike most girls, I think), but she is passionate about them.  I'm grateful that she's found something that makes her heart happy and that she looks forward to every week.  And I've promised her that we will never, ever buy her a horse.  I'm still trying to wiggle my way out of promising her a dog.  And I'm failing.

Olivia and Premoe.

Leavenworth

With our busy days and very little family time these past two weeks, we decided to carve out a day to spend together.  We've wanted to visit Leavenworth for years now, and finally decided it was time.  Last Sunday we piled in the car and took a day trip.  It was a gorgeous day, and we were there in two hours.  Such a pretty drive.  And I was amazed at the scenery once we got there.  This little German-esque town, sitting at the bottom of snow-capped mountains.  It truly felt like we had traveled to Bavaria.  Leavenworth is a darling town.  We spent the day walking up and down the main drag, visiting pretty much every shop there was.  Actually, we ate our way through town.  We hit the cheese shop, the oil and vinegar shop, the candy store, the ice cream store, the sauce/jelly store (and yes, samples were consumed in each and every one).  Philip and I managed to sneak in some wine tasting while we made the kids sit and wait for us (is that bad?) and came home with a fabulous bottle of red.  We traipsed through multiple souvenir shops, and even found a store that Olivia hunted down that told us the meaning of our family name (a very German name, mind you).  Schmitt means blacksmith.  Who knew?  We ate lunch at a little bistro--Olivia and I stuck to the theme and had schnitzel and spaetzle.  Delicious!  It was a perfect day.  The kids loved it and can't wait to go back.  We're thinking maybe a winter trip next time, to see it decorated for Christmas and maybe get a snow fix.  It was a fabulous family day, and we enjoyed some much needed time together.

Gorgeous!

My babies.

Enjoying dessert on the town square.

The kids think we should move there.  Apparently they liked it.

Health Update

I continue to get my weekly chemo treatments.  Today I finished my second round and now get to enjoy a recovery week.  I still have to go back in tomorrow for my transplant intake appointment.  They're getting the ball rolling on my transplant and I'm hoping to learn more about the donor status.  I'm still feeling really good, which I don't take for granted.  I know that it is not typical to feel this good while going through chemo.  I'm so grateful for these drugs.  Not only are they allowing me to maintain my quality of life, but they're killing my cancer.  How blessed am I??  I should have updated blood results in the next couple of days and we're hoping to see even more improvement in my myeloma markers. My hand tremor has returned, and they're taking that very seriously.  But at this point, I don't want to make any changes.  I'm guessing the tremor will decrease during my week off--it seems to be very responsive to the chemo drug.  While on chemo, it flares up; while off treatment, it settles down.  It's not terribly impairing--I have a little trouble writing sometimes, and Anna wanted me to paint her toes the other day which was a fail, but I can manage most things just fine.  The priority is to kill the cancer.  And that's what we're doing.

Some sweet friends have gotten together and organized a stem cell donor drive at the kids' elementary school tomorrow.  My friend, Keri, is spearheading the effort and we're hoping to get a great turnout.  Through this journey, we've been made aware of the thousands of patients who are looking for bone marrow or stem cell donors.  This awareness makes me want to see something good come out of this horrible situation.  I truly believe that with every "bad," there comes some good.  And I'm hoping that this small effort will result in a lot of good.  We're working with Be The Match, an organization that manages the largest marrow/cell donor registry in the country.  The goal is to get people to join the registry--people who are committed to donating bone marrow or stem cells should they be determined to be a match for a patient in need.  I think this process can be a bit scary for those who don't have a lot of education or information about the process, but I'm hoping that those who come will have open minds and kind, giving hearts.  The process to join is very simple--just an easy cheek swab.  And the actual donation process differs, depending on whether or not the donation is marrow or cells.  But in both cases, with a little time commitment and some very temporary discomfort, a life is saved.  The chances of finding my donor in my little town of Maple Valley are extremely remote (although stranger things have happened!), so the goal isn't necessarily to find my donor, it's to raise awareness and stimulate the registry with a bunch of new potential donors.  I'm looking forward to seeing everyone who joins us tomorrow.

Vacation Recap

Spring Break 2016 is in the books, and it was one to remember.  I honestly feel that this Palm Springs vacation was our best one yet.  Maybe it's because I wasn't able to travel last year, so I had a greater appreciation this year.  Or maybe it's because traveling with our kids has gotten so much easier over the years.  After spending many vacations standing in the pool catching jumping kids, carrying them in and out of the pool, dealing with floaties and rings, it's a whole new world now that we have three kids who are strong swimmers and can take care of themselves in the water.  Or maybe it's just that I felt more "in the moment" this year, and tried to enjoy and absorb every minute of this treasured family time that I could.  I have to admit, as much as I try to fight the "bad thoughts", they still managed to crawl into my brain every so often.  Will I be healthy enough to travel next April?  Will I even be here next April?  Is this the last time I'll be able to share this tradition with my kids?  While I can't always control these thoughts, I'm smart enough to know to shut them down quickly.  I don't have the answers to these questions, but I know that there's nothing to gain by worrying about them.  My goal these days is to stay in the moment, and to not look too far forward.  Easier said than done, at times, but very important to remember.

We thoroughly enjoyed our week with my parents.  The kids swam daily--Anna became a professional mermaid with her new tail that my parents got for her.  Lots of football-catching, cannon-balls, a little Marco Polo (until the adults shut it down due to the annoyance factor), night swims, and hot-tubbing.  Poppi spent some time in the pool with the kids which is always a favorite.

At the airport, ready for vacation to begin!

Our little mermaid.

Poppi and his kids.

We hit up our usual spots.  On Sunday morning, we headed to the College of the Desert street fair to wander the shops.  I like to go check out the jewelry, sunglasses and kitchen gadgets.  The kids like to go for one reason, and one reason only--the freshly-made donuts with maple glaze and cinnamon sugar.

Donuts!

We made the tour of our favorite restaurants--Ruby's Diner, Las Casuelas Mexican restaurant, and our annual pilgrimage to In 'N Out.  Philip and I managed to squeeze in a date night and had an amazing dinner at the Ritz-Carlton.

Dinner at the Fish Market & Grill.

Mexican food (and margaritas) tradition at Las Casuelas.

Our annual In 'n Out fix--when will they open in Seattle?????

The kids' favorite--burgers at Ruby's, and our annual photo with Sonny Bono.

We spent one day at the Wet & Wild water park.  William went down just about every slide there was--even the huge 7-story vertical slide.  No thank you.  He survived to tell the tale, so all was good.

Water park!

On our last day, we went on a little hike in Indian Canyon.  Beautiful desert views, some small falls to explore, and groves of palm trees.

Walking to Starbucks for some pre-hike sustenance.

The falls at Indian Canyon.

Philip and I took Olivia out for a "drink" at one of the hot-spots in town one evening.  She was very amused when the waiter brought her a real margarita rather than a non-alcoholic one.  She's 12.  I know she looks older than her age, but really??

Olivia and her non-alcoholic cocktail.

But then I saw this photo and realized that she does look all grown up!  Where did my baby go???

Having fun on Palm Canyon Drive.

Mom and I escaped one afternoon for lunch and shopping.

Early morning flight back home.  Farewell, Palm Springs.

It was a fabulous week, and many memories were made.  The kids are very sad that they have to wait 365 days until they can return.  And I am, too.  But we're back to reality and looking forward to fun times ahead.  

On the health front...

I'm not going to lie...this week has been tough.  It's always difficult to come back from a wonderful vacation (I'll recap our fun spring break trip tomorrow), but we flew home last Sunday, and then I was back in my chemo room bright and early Monday morning.  Rough transition!  I started my second round with infusions on Monday and Tuesday, and have been feeling the effects since then, which is to be expected.  My sweet friend Bobbi went to chemo with me on Monday and kept me company (I figured Philip could use a day in the office after being on vacation for a week).  Philip joined me on Tuesday because we met with my doctor that morning to map out the next steps (more on that in a minute).  Fortunately, my chemo appointments are a bit more streamlined this round.  Last month, when I started these two new drugs (carfizolmib and pomalidomide), they started me a bit conservatively.  The carfizolmib is my infusion drug, and I take pomalidomide orally each night.  The infusion takes only thirty minutes, but they were adding pre/post hydration for two hours.  I would get a bag of fluids for one hour, then the infusion, followed by another hour of fluids.  While I wasn't crazy about having to be there for 3+ hours, I was very surprised and grateful that I tolerated the chemo so well.  The hydration is primarily used to help the kidneys, but it can also help with general tolerance.  When I started this new round on Monday, I found out that they removed the hydration and increased my dosage (because I didn't have any problems/side-effects last time), so I knew that this week may be a bit different.  The up side is that my appointments are fairly quick.  The downside is that, while I'm not feeling horrible, I'm certainly feeling like I'm getting chemo.  Tired, not a lot of energy, and maybe a wee-bit cranky.  But, I'm glad they bumped up my dosage--I want to blast those cells with everything we've got.

In the last month, we've been working on figuring out the next steps.  I made a doctor change that was  unexpected but gives me a lot of reassurance that I'm in the right place.  My original doctor was traveling during March, so she connected me to Dr. Libby, a multiple myeloma physician, in her absence.  We met with Dr. Libby as I started this chemo protocol in early March, and as soon as we were done with our meeting, I told Philip that I wanted to make a switch.  I had absolutely no problems with my first doctor--she's the one who diagnosed me  a year ago and has worked hard on my case.  But, I just liked the way Dr. Libby communicated with us, liked his approach, appreciated his directness.  I let him know my wish to make a change, and it was a seamless transition.  My original doctor called me to follow up--she's happy that I'm happy, and will stay "in the loop" as needed.  I was impressed and grateful that they made the process a comfortable one.

As far as my treatment plan goes, we've been looking at various options.  An allogeneic (donor) transplant is the obvious choice at this point, and the donor search continues.  But we've also been exploring CAR T-cell immunotherapy, which is a very new experimental therapy for myeloma.  It's been used primarily for leukemia and lymphoma up to this point, but there are a few studies for myeloma around the country (NIH, Dana Farber, and MD Anderson).  It's less invasive/risky than a transplant, and is showing promising results.  In a nutshell, they take out t-cells (a specific white cell), and they alter them in the lab (they make them "bionic").  They infuse them back into the patient, where they're trained to attack the cancer cells.  That's my very elementary understanding of the process, and probably not exactly how a physician would describe it.  But, you get the gist. My doctor has been doing some research as to how to get me into one of these studies, as this is something I'd like to try before heading to transplant.  We had a few programs narrowed down this week, and he was getting ready to "sell" my case to these programs.  I was ready to pack my bag and head to Bethesda, Boston, or Houston for a few weeks.  But then I got the good news/bad news call.  The good news--my Monday labs came back yesterday and my myeloma markers are completely normal.  No cancer in my blood.  That's good news.  That means the chemo is working, my body is still responding to it, and although my cancer is aggressive, we're still able to control it.  And that was just after one round of chemo.  The bad news--because I'm now in "remission", I don't qualify for the T-cell studies.  Patients have to be in active relapse, and I'm not.  And my doctor doesn't want to stop chemo at this point as they're worried that the cancer would take off.  So, while I'm disappointed at not being able to try this new therapy right now, I'm grateful that there's no decision to be made.  I firmly believe that things happen for a reason, and in this case, I'm meant to do the transplant.

So, we move forward, waiting for a donor match.  I'll continue this round of chemo, and will possibly start a new round in May if we're not close to doing the transplant.  They only want me off chemo meds 2-3 weeks before transplant, so I'll keep doing what I'm doing until they find a match and we get the transplant scheduled.  I got a call yesterday to schedule my transplant intake appointment (on the 27th), so they're getting the ball rolling.  I'll meet with a transplant doctor to discuss the process--a lot of it will be redundant as I've been through it already, but there will be a lot of new info as a donor transplant is a different animal than an auto transplant.  There will be lots of new information/procedures to digest.  I'm hoping that my donor will be finalized in the near future.  That's an integral part of the process, so fingers crossed that a viable, willing donor will be located.

We're comforted to know that this chemo is working, that these drugs are effective, and that my body is still responsive.  We are controlling the cancer.  That's huge.  I've always been a control freak.  I figure I've just been in training for this challenge.  Control buys us time.  And that's what we're after.

The desert.

When I was 12 years old, my family decided to head down to Palm Springs over our spring break to visit my grandparents who were "wintering" there.  Little did we know, we were starting a life-long family tradition that is still going strong.  We continued to fly down to the desert every March to spend time with my grandparents, and when they aged and were unable to travel down there, my parents started spending a couple of months there every year.  So, our spring breaks in Palm Springs continued.  In the past 33 years, we've only missed two of our annual trips:  one year, when I was in my early 20s, we opted for Hawaii instead (a true sacrifice), and last year, I was in the beginning stages of my illness/diagnosis and was unable to travel (the kids went down with my parents).  So I've spent 31 spring breaks in the quiet, sleepy desert town of Palm Springs.

The trips have evolved over the years.  At first, my brother and I were kids and spent countless hours in the pool playing Marco Polo.  During my middle school years, we watched as Palm Springs became THE PLACE for college spring breaks in California.  The town was filled with kids, riot police were on every corner, and they all provided great people-watching opportunities.  As we got older, we brought friends into the mix.  My senior year of high school, I flew down with three of my best friends and we got to stay in a hotel and do our own thing (my parents were only five minutes away and for some reason, trusted us to make good decisions).  Eventually, there were a few boyfriends who made the cut and joined our family vacations over the years (until I met the right one, and he still gets to come with us).

We were in Palm Springs 23 years ago when we got the 2am call that they had procured a liver for my dad, who had been on the transplant waiting list for nine months.  We quickly packed, headed to the airport, jumped on a private plane sent by a friend, and went straight to OHSU where he underwent a life-saving surgery.  That particular vacation was cut very short, but for a very good reason.  And it's a day we continue to celebrate every year.

Now, we get to take our kids to the desert every year.  And they count the days/minutes/seconds until we board that plane.  We get to do the same things my brother and I grew up doing.  Swimming (lots!), walking up and down Palm Canyon Drive, visiting our favorite restaurants and shops each year, lots of golf (real and mini), the occasional trip on the Palm Springs Tram.  Flying into Palm Springs feels like we're coming home.  Everything is so familiar and comfortable, and it's a place that's filled with so many cherished memories.

Olivia's first trip - March 2004.

First trip with two kids--Olivia and Will in 2006.

March 2007.

Three kids (one silly, one mad, and one cranky--quite the crew)! March 2009.

March 2011.

High Desert Museum - March 2012.

A fro-yo stop - March 2014.

Today we get to hop on a plane and begin our vacation with Nana and Poppi.  I am beyond grateful that my health is stable and that I'm allowed to have this week with my family.  I don't take that for granted.  We have many more memories to make, and we're all ready to get started.