New Normal

I have officially lost track of my post-transplant day due to all of the unexpected happenings around here.  I believe I'm in the mid-40s somewhere, but honestly, the transplant aspect has become a little less important as we're back in active treatment.  The past week or two have been a big blur--it's a strange thing to lose days of your life, and it seems like every day/week is filled with both good and bad  news.  I guess this is a good thing--there is at least some balance.  But there is a sense of one step forward, three steps back.

I ended up getting released from the hospital this past Tuesday.  The horrific headaches continue, and that's my biggest complaint right now.  The theory is that the cancer cells in my brain fluid are causing inflammation, and that is causing the pain.  I'm fine if I'm laying down, but sitting and standing are very difficult.  One piece of good news is that my original lumbar puncture showed 21% myeloma cells in my spinal/brain fluid, and in just a week, that number went down to 9%.  That means that just two chemo doses have cut it in half.  We're hoping that means that the inflammation will reduce pretty quickly and I'll get some relief.

The best news is that I'm now back at home.  I made that decision while I was in the hospital, and that has made a huge difference.   I just could't bear the thought of going back to the apartment when I knew that I had this huge fight ahead of me.  My team has been vey understanding, and they support me balancing my physical healing with my emotional/mental healing.  So, I'm back home with my family, and get to sleep in my own bed every night.  It has meant daily trips into Seattle this past week but it's worth it.

The schedule right now is full of juggling chemo appointments.  I have my "brain chemo" on Mondays/Thursdays via my brain port; and I have my regular chemo on Wednesdays/Thursdays.  And we monitor weekly and see how things go.  The main concern is my brain fluid involvement--that one is going to be harder to control, although it appears that the chemo is making progress.  My systemic treatment (marrow) isn't quite as concerning because the chemo has worked for me before.  I spend most of my time laying down avoiding my nasty headaches, but we're hoping relief is imminent this week.

My life-long best friend, Kristina, flew in from Colorado this weekend to hang out with me--it's been so nice to have such a fun distraction, and  I know Philip appreciates a break.  We've been busy catching up, and she's been good at forcing me to take my meds and stay on track.  My parents are holding up well, and the kids are busy with their fun summer plans.  Will and Anna just finished up a week-long football/cheer camp this past week, and my biggest blessing all week was that I was able to be there on Thursday night to watch the cheer finale and watch Will at  practice for a bit.  They start their official season this week and both are so excited.  I'm so grateful that with help from our village, their lives have remained virtually the same through all of this craziness.  We have some pretty tough, resilient kids.

Thank you to everyone for the continued cards, texts, emails, gifts, etc.  I feel very remiss that I haven't been able to stay caught up with my thank you notes, but please know that every word of encouragement is greatly appreciated.

Day 37 - a big detour

It is very safe to say that life handed us a GIANT (and not in a good way) curve ball this week that we never expected to have to try to manage.  I will tell you, a cancer journey is not for the faint of heart.  You've always got to be ready for change--good, bad, and very ugly.  And we're being tested in a big way.

My  headaches continued last week, but they discharged me back to the apartment last Thursday with a regimen of pain pills that I was hoping would mitigate the discomfort.  The kids and my parents returned from Black Butte over the weekend, so we got to send some time on Sunday with them which did my heart a lot of good.  And, on Monday night, my bestie from college, Trea, flew in to take over babysitting duties for the week.  I'm so lucky to have so many incredible friends willing to come and watch over me!!!  However, I woke up on Tuesday with a splitting headache and unfocused vision.  So once again, we called triage at SCCA and were told to come in.  Long story (day) short, by that evening, the headache was so bad I couldn't stand or walk because of the pain so they transported me to UW via ambulance (thank goodness Trea got to share that scary ride with me--Philip followed in his car).  Back to the transplant floor.  Fortunately, we've gotten familiar with many of the nurses and medical assistants on the floor, so we're quite comfortable here now.  On Wednesday and Thursday, I had MRIs, a CT scan, a chest x-ray, two lumbar punctures and probably some other procedures that I can't remember.  We've met with many teams--transplant, neuro-oncology, neurosurgery.  Once again, I'm so grateful that Trea was here as she was able to help us keep it all straight and take notes.  Too much information at an emotional time is extremely difficult to digest.

Bottom-line--cancer cells showed up in my spinal fluid which means they've traveled to my brain.    This isn't news we wanted to hear.  It creates a whole other challenge  when attempting to treat these particular cells.  The MRI shows that there isn't a mass or collection of cells, which is good.  Rather, they're circulating in my spinal fluid.  I already started chemo--during the second lumbar puncture on Thursday, they injected a dose of chemo into my spinal fluid so those cells are officially under attack.  And this evening, I underwent brain surgery to implant an Ommaya Reservoir in my brain, which is essentially a port placed under the skin on my head with a catheter that is threaded through a small hole that they drilled in my skull and leads to a ventricle about one-inch deep into my brain.  It will facilitate the chemo process--they'll just be able to use the port in my head, and it will be much less invasive than having do a lumbar puncture each time.  Seriously, I'm writing this just a few hours after brain surgery, so who knows what I may start rambling about.  Also, this surgery required them to shave a "small" section of hair on the side of my head that is currently bandaged.  If you hear screams coming from Seattle, you'll know that bandages have been removed, and I've seen the hair challenges that I have to deal with on top of everything else.

So, suffice it to say that this transplant didn't give us the results we were so hoping to see.  I can't say I'm shocked, but I certainly didn't expect to go backwards so quickly.  My bone marrow biopsy from last week did show cancer cells (not a surprise now), but it showed a chimerism of 100% which means that my immune system and blood system is now 100% donor.  I'm fully engrafted, but unfortunately, my donor's cells were no match for my nasty myeloma cells.

The emotional toll this has taken is immense.  This jump to my central nervous system and brain have, without a doubt, negatively impacted my prognosis.  This is not something I will beat.  We will hopefully get some more temporary victories, but this myeloma is tenacious.  It's on a  mission.  But so are we.  I just don't think we can win this fight, unfortunately.  And wouldn't you know it--only 1% of myeloma cases have cells that travel to the central nervous system.  What??  I'm another anomaly.  So we not only have to ask why did I get this disease, but why did it come with so many "improbable" characteristics that are going to make it impossible to beat?  What do we do now?  We attack.  We've started my brain chemo, which is a different protocol than we use for my systematic myeloma. I will resume the chemo protocol I used just before transplant since that was very effective.  We will use every chemo drug we can get our hands on that may buy me some time.  We'll talk to my oncologist, Dr. Libby, about revisiting potential T-cell immunotherapy studies that I may now be a candidate for.  I'm still in fight mode, but I also have to be realistic.  That's a very fine line.  Every time I start to feel hopeless, I get a call from Anna begging me to let her get a kitten from her friend's new litter (that's not happening), or Olivia calls me and wants to play her new piano masterpiece for me over the phone, or Will sends me a picture of his new football cleats and tells me how excited he is to start his new season next week.  I have football games and piano concerts to attend (and kittens to avoid!).  I have more life to live.  I need to be here as long as I can, which will never be long enough, and now looks frighteningly short.  Philip and I have shared many tears this weeks, we've had discussions that you never want to have (cancer forces that upon you), and have wondered why our life has been attacked by this vicious disease.  But we've also worked hard to find the joy.  It's always there.  The support is overwhelming--my girlfriends are incredible (Trea was with us through all of the hard this week and was a huge blessing to both Philip and me), my parent have kept the kids happy as can be, my husband is by my side constantly, anticipating what I need before I have to ask.  But we find that joy mostly in the form of our babies' sweet smiles, funny dispositions, and simply the sheer love they bring us.  They will help guide us as we navigate these very unchartered and undesirable waters that are ahead.  I thank God for them every single day.


Day 27...Back in the hospital

This will likely be brief, as it's been a very rough week or two and my energy is low.  My headaches have continued and started to get worse.  I spent three days in the triage department of SCCA while they tried to determine a course of action. We had a difficult time finding a medication that would cut thru the headache.  Finally, this past Monday, I had reached my pain limit, so they admitted me to UW Medical Center.  We've spent the week working on finding a drug cocktail that will give me relief.  I think we've finally found a protocol that seems to be working, and there's talk of getting me out of here today.  Fingers are crossed.  It'd be nice to be able to get back to the apartment and get some freedom back.

They're still not certain of what is causing the headaches.  Could be the cyclosporine, one of my immunosuppressants that I started right around the time of my transplant.  They did switch that drug out last week, so if that was causing my headaches, they should be coming to a stop.  They could also be caused by my cell engraftment.  All of my cells have officially engrafted this week, which means the donor cells are now making new cells.  My bones are very full of cells, and that can cause bone pain (or in my case, head pain).  Or, the headaches could be attributed to one of my current meds.  We just don't know.  The plan is to treat them, and hope they come to an end on their own.

So, it's been a rough couple of weeks, and it's been a struggle to stay positive.  But there is always joy!  One of my joys this week is that one of my besties, Lis, flew up from Reno on Monday and has been here at the hospital all week with me.  That wasn't the plan when we scheduled her visit, but she's done a great job keeping me distracted, and forcing me to eat and walk.  It's been a great treat to get to catch up with her.  She leaves this evening, so Philip will be back on duty tomorrow.  Another big joy is that the kids are off on our annual trip to Black Butte in Oregon with my parents.  We were all supposed to be there this week, but since my transplant messed up that plan, my parents decided to still take the kids over for the week.  While I'm missing them like crazy, and so wish we were there too, I'm very grateful that they're still able to be over there swimming, golfing, paddle boarding, bike riding, and visiting all of our favorite restaurants.  I can't wait to see them when they get home this weekend.

Going forward, the plan is to return to the apartment today; I have my Day 28 bone marrow biopsy scheduled for tomorrow.  Not a procedure to look forward to, but it will give us a lot of information.  They'll be checking on presence of disease, and they'll also be able to determine how much of my immune system is my donor's, and how much of it is still mine.  They want to see that I have at least 50% donor immune system.  So that will be good information to have. Otherwise, I'll be taking it easy and trying to stay on top of these headaches.  One day at a time...







Day 14

Two weeks.  Most certainly, they haven't been the quickest two weeks of my life, but we're making progress.  I feel like I don't have a whole lot to report as each day feels like the last.  It's a lot like Groundhog Day around here.  Lots of challenges, balanced out by more blessings.  It's important to count both, and helps to keep me sane.

Health update:  my counts have bottomed out, and it looks like they're starting to turn the corner.  I've been to the lab every single day since transplant, and they're watching my numbers closely.  Fortunately, I haven't reached the thresholds where I would need blood or platelet transfusions, and it looks like I probably won't.  As my counts begin to rise again, we know that the new cells are engrafting, which means they are taking over and making new blood cells.  My immune system is fairly non-existent, and will continue to be compromised as I'm on several immunosuppressants for several months.  These meds keep my immune system from fighting off the new cells.  So far, everything is going smoothly and as expected.

My biggest challenge this week is that I'm experiencing debilitating headaches.  They started almost two weeks ago but have gotten worse over the past few days.  My team is concerned and a bit perplexed.  I had a brain MRI today to rule out brain inflammation, which apparently can be caused by one of my meds.  Fortunately, the scan came back normal, but we're still without answers.  They've adjusted dosages on my meds, so now I have to be patient and wait and see if there's any improvement.  The headaches aren't constant; they most often happen when I stand up, and result in an intense pressure in my head/neck.  They only last a few minutes, but they stop me in my tracks.  I'm trying not to be too cranky and tough them out, but I'm frustrated and a bit disappointed that there wasn't any resolution before the holiday weekend.

Fortunately, I've had a bit more energy this past week.  Each day is different, but we've been able to get out and about a bit.  It's such a treat to get out of the apartment and get some fresh air every day.  I've been able to see the kids a few times over the past week which definitely helps my mental state.  My parents took Olivia up to Victoria, B.C. for an early birthday trip, and they're having a fabulous time.  While they're gone, Philip got to go home to spend a few days with Will and Anna.  The kids are keeping him busy.  And I get to be babysat by one of my middle school/high school besties, Stephanie.  She came up on Wednesday and will head home tomorrow.  We've had a great time balancing our laziness with some fun outings for lunch and shopping.  We've watched many chick-flicks, and she's taking excellent care of me.  It's been a treat to get some girl time.

Steph and I in front of the American Girl store--we had to send this photo to our daughters so that we could all reminisce about our many shopping trips here when they were younger.
This weekend, we get to celebrate Olivia's birthday, and get together for the 4th of July.  We get to watch fireworks right outside our window over South Lake Union.  If the weather is nice, we can go up to the rooftop garden for a perfect view.  While we'll miss our usual 4th of July traditions, it'll be fun to be in the city and try something new.

We're hoping this next week will be uneventful, and that I'll get some headache relief.  All in all, things are going very well and I'm in pretty good shape for Day 14.  We will continue to take things one day at a time.


Day 7


One week.  It's been one whole week since my transplant.  Honestly, it feels like it's been much, much longer than that.  I've discovered over the past week that this road is going to be very mentally tough.  I was expecting the physical challenges--the nausea, the fatigue, the side effects of my many meds.  But I hadn't realized just how difficult it was going to be to get through each and every one of these 100 days.  We're only on day 7.  We have 93 more to go.  I decided today that it feels much better to count it in weeks.  One week down, 13.3 to go.  The significance of the 100 days is that that's the amount of time I'm technically a transplant patient.  And that's the amount of time that we have to live here in Seattle.  On day 100, if all is going well and I'm in reasonably good health, I graduate from the transplant clinic and return to the care of my oncologist.  And we get to move back home.  Hence, the daily countdown.

My three days in the hospital last week are a bit foggy for me.  I was extremely ill from the combination of the three days of chemo, the radiation, and the myriad of meds that I started that week.  Some of my immunosuppressant dosages were started too high, and they have since been adjusted.  Fortunately, they got my nausea under control and I was able to come back to the apartment on Sunday night.  I'm grateful that I've been able to get through this week at "home," rather than being in-patient.




A visit from three of my favorite people.



My small bag of potentially life-saving stem cells.


I've received a lot of questions about my donor, but don't have a lot of answers.  I still don't know where the cells came from, geographically.  My donor is a 21 years old woman living here in the US.  The transplant itself was quite anticlimactic, and mine was especially low-key since it started around 3:30am.


Since being back at the apartment (it's very hard to call this place home!), our days have been long and uneventful.  While I'm feeing better, my energy level is still very low.  I have appointments at the clinic every day--they're checking my blood counts constantly.  My counts are still coming down--my neutrophils have almost zeroed out which means I have no immune system at the moment.  They should start increasing again in the next 5-7 days, which means the new cells have engrafted and are taking over.  In the meantime, I have to be extremely careful about avoiding any potential source of infection, so I'm not going out to busy, public places.  I wash my hands constantly, and am careful about what I eat.  Eating is still a big chore for me.  I was lectured by my team this week about eating more--I still have no appetite, so it's challenging for me to find foods that taste good and settle well.  I did a bit better today, so I'm hoping that I'll be able to improve a little each day.  I was told that I'm not allowed to lose any more weight.  We'll see...

Today we decided that we needed to bust out of here for a little while, so after I did my labs, we drove over to the Ballard Locks.  I had never been there, and it was a great place to get some walking in.  The grounds near the locks are beautiful, and it was nice to be outside for a bit.  



Our field trip to Ballard.

Philip is working from here most days, I'm spending a lot of time binge-watching mindless tv shows, and we FaceTime the kids as often as possible.  They're in Portland this weekend with my parents--I'm happy that they're getting a nice change of scenery, and they were thrilled to be able to spend time with their cousins.  They're all doing pretty well--good days and bad days.  The bad days aren't fun when I can't be there to wipe away tears and help them cope with all of this.  I've had moments when I want to just scrap this whole thing and go home (I know...it's a little late for that).  But as a mom, when your kids are unhappy and your heart is breaking, you'd do just about anything to "fix" it.  I've had to do a lot of pep talks, which are good reminders for me, too.  We will get through this.  We need to take it one day at a time and not look at all 93 days that are left.  Life will return to our normal again one day soon.  We're all going to work together and get this done.  And God willing, this will all be worth it.



Transplant - Days 0 and +1

This has been a wild ride so far, and it's only been two days.  And to be honest, there are parts that are very foggy for me, but I'll do my best to recap.

Day 0 - Transplant Day
I started the morning (Thursday) by hooking myself up to my IV pump for four hours of fluids.  This was required before my radiation appointment.  Around 11:30, we headed over to SCCA to prep for the appointment.  I had never had radiation before, so I wasn't sure what to expect.  It was actually much easier than I had expected.  I had TBI--total body irradiation.  This is done before transplant to attack my immune system which creates more space in my marrow for the new cells.  We want my immune system to be fairly inactive so that it doesn't fight off the new donor cells.  The procedure required me to lie down for about an hour with several markers on my body, and that was it.  I didn't feel anything at all.  No pain, no heat.  It was a pretty simple procedure.

However, about an hour after we returned to the apartment, I became extremely nauseous.  That's not uncommon, which is why I took an anti-nausea med before the appointment, but it apparently didn't work.  I also developed a severe vise-like headache very quickly.  Philip spent some time on the phone with my transplant team, and because my nausea was getting worse, they decided to send me to the hospital a bit earlier.  I was scheduled to be admitted at 8pm, so we just jumped the gun a bit.  I got settled in the hospital, they got me on IV nausea meds, and I napped. My cells arrived around 3:30am, and the actual transplant started quickly and was uneventful.  They hooked the bag of cells up to my IV, and it took around 4 hours to complete the infusion.  No problems at all.  So, because the  transplant didn't start until after midnight, Day 0 is actually Friday, June 17.

After that, things get a bit foggy for me.  The nausea continued, I was on a lot of meds, and I slept most of the day.  My parents brought the kids in for a quick visit that evening--it was great to see them.  They had finished school the day before and had all sorts of exciting stories to tell us.

Day +1
Today was the first day after transplant and was a little more of the same.  The goal is to get past the nausea, start to eat again (I hadn't eaten since Wednesday), and try to take some of my meds orally rather than IV.  That's how I'm going to get out of the hospital.  So I worked hard today at taking a few bites of anything--cereal, soup, toast.  Just had to get something in my stomach, even though I have absolutely no appetite.  I slept a lot, worked on my meds--by tonight, I've been able to take all meds orally.  And no vomiting today.  That's big.  We got another visit from the kids--love seeing their sweet faces. Truly, my reminder as to why I'm going through all of this.  To be honest, these days are numbingly boring, but I know they're important steps considering everything that is going on in my body with the new cells taking over.  I just try visualizing them attacking those cancer cells and obliterating them.  Over and over again.

My plan tomorrow is to BEG to get out of the hospital.  I think I've met my goals, so we should good.  It'll be nice to get back to the apartment where I can walk around without an IV pole and have a better bed (and no nurses waking me up during the night).  But this is a good place to be when you need this type of care.  My nurses have been excellent and so kind.  Still, I'd rather be back to our own place as soon as possible.

It's crazy to think that after all of the planning, and the many, many appointments, tests, scans, biopsies, the transplant has actually happened.  Now we pray for the results we want to see.

Gratitude

Thank you.  Two very small words that hardly begin to express the gratitude we feel as we look at the long list of names of friends, family, acquaintances, and even strangers, who have donated to our housing/medical fund.  First of all, we are so appreciative of our dear friends, Sheridan and Ray, for convincing us that setting up a fund was an acceptable solution, and then making that happen for us.  And then the response...absolutely overwhelming.  It's hard for me to wrap my brain around the help and support.  As difficult as it was to ask for help, it's such an incredible relief to know that we no longer have to stress about paying these housing bills.  As I sit here tonight, on the eve of my transplant, my list of worries is long--my kids (how much I miss them), worried about missing their last day of school tomorrow, worried about whether or not I'll be able to keep my meds down tonight (suffering mild nausea from chemo and my new immunosuppressants that I started on Tuesday), worried about having to endure full-body radiation tomorrow, worried about how my system will respond to my donor's cells, worried about how I'll get through these next 100 long days.  We have a full plate of worries, so to receive the gift of not having to worry about money right at this moment is an extraordinary blessing.  Thank you.

Tomorrow is the day.  It's strange, after talking about it for so long, and working through the long preparation process, that's it's finally the time.  I've survived the three days of conditioning chemo with few problems (a little fatigue and nausea).  Tomorrow morning, a 21 year-old woman will give up several hours of her day to go through the aphaeresis process, where they will remove her blood, sort out the stem cells, and replace the leftovers.  Those cells will be hand-carried on to a plane and will arrive in Seattle around 9:30pm.  The courier will then carry them to a cell lab at Fred Hutch, where they will be treated and prepared for infusion.  Meanwhile, at 8pm tomorrow night, I'll be admitted to the UW Medical Center and will be prepared to receive the cells.  At approximately 1:30am, the cells will arrive at the hospital and the transplant will begin.  The infusion lasts approximately two hours, and there's little fanfare.  It looks like a basic bag of blood that will be hooked up to my Hickman line.  Not very exciting, but at the same time, so very exciting.  These cells could have the power and strength to attack and kill the stubborn myeloma cells in my marrow.  These cells will completely change the make-up of my body.  I will inherit a brand-new immune system and blood type (after learning that my donor is 21, I joked that I'd also love to inherit her energy, metabolism, and collagen, too).  We hope that this simple infusion will extend my life by many, many years.  This is the beginning of a long road, but so worth every bump along the way.









New Digs

Yesterday was moving day.  It was a very full day--we started the morning off by watching William and Anna walk in the Maple Valley Days parade.  They walked with their football/cheer teams, and braved the cloudy, wet weather.  I forgot to take pictures (oops!), but they had a great time, and it was fun to see so many of our friends and neighbors at the event.  I love living in a small town.  As part of the event, there's a kids' art show.  Anna was one of three second graders at her school to be chosen to have her art displayed, so we definitely had to go view her masterpiece.  She was so proud!

Showing off her artwork.  So excited!!

After we celebrated Maple Valley Days, we quickly packed up and headed into Seattle.  We found out just a few days ago that an apartment opened up at the Pete Gross House, which is where we lived last time.  We thought we'd have a few more weeks on the waiting list, but fortunately, we got a unit just in time.  So now we just have to move once, which is a relief.  We have a corner apartment on the top floor, with a view of Lake Union.  It's more spacious than our last apartment, and it's nice and bright.  And, it's just a 2-3 minute drive to the SCCA.

It didn't take too long for up to unload and get things organized.  We had lots of little helpers.  Anna has been making me pieces of artwork to decorate our place, so she was busy hanging them up for me.  I had each of the kids give me something special of theirs so that I can have reminders of them--I got two stuffed animals and a baseball.  Love them.  We're settled and mostly comfortable, and ready to get this show on the road.

We all went out to dinner in Seattle last night before my parents took the kids home.  The kids are doing really well with all of this so far.  There were some tears last night, but I'm hopeful that new routines will kick in, school will shortly be out, and they'll be able to manage these strange circumstances.  I know there will be many bumps in the road for them, emotionally, and that's to be expected.  But, they have a lot to look forward to this summer, so I think they'll be distracted and having fun.

We were at SCCA early this morning to start Day #1 of my chemo conditioning.  I had a thirty minute infusion, so it was a fairly quick appointment.  I'll have three doses of this chemo before transplant, and fortunately, it sounds like this chemo drug is well tolerated.  They did give me some anti-nausea meds beforehand, just in case, but I'm not expecting to feel too poorly.  I got my Hickman line put in last week, so now my labs and chemo no longer require any needle pokes.  That's the only upside to having a line.  I'm still trying to get used to the two tubes/leads coming out of my chest.  My chest is still a bit sore from the surgery, but I'm slowly becoming accustomed to it once again.  Showering is a challenge, but I've discovered that Glad Press 'n Seal works very well to keep my line dry.  You do this long enough and you get to learn all sorts of tricks.

We're going to enjoy an appointment-free afternoon, and gear up for more chemo tomorrow.  And, I get a visit with my kids today.  One day closer to Transplant Day!

For those of you who have asked, here is our new address for the next 3.5 months:

525 Minor Ave N, #614
Seattle, WA 98109

Just like last time, no flowers are allowed.  But we will be able to receive mail:)







Asking for help

I'm not good at asking for help.  Never have been, and probably never will be.  I also, along with most, I presume, don't enjoy talking about money.  So, put the two together and I'm very uncomfortable.

Philip and I have managed, over the past 16 years, to meet our financial obligations.  With a few hiccups in our early married years, we've been able to make ends meet fairly well.  He earns a very good income that has allowed me to stay home with our kids for the last 13 years, and we've been able to live comfortably.  While we certainly aren't living on "easy street," we've been able to pay our bills, fund the countless fees for our kids' many sports and activities, and enjoy a vacation every year.  We've also been the beneficiaries of my wonderfully generous parents who have helped out when needed, taken us on many fantastic vacations, and frequently gift the kids with the things they "need."  We also consider ourselves extremely blessed to have good health insurance coverage.  Our insurance company has paid every single claim we've submitted since my diagnosis, no questions asked.  But of course, they don't cover 100% of these costs.  We've been able, up until now, to pay our portion (or set up payment plans that we will eventually pay off).  It's been a juggling act, trying to make ends meet through this 14-month journey.  But we've been able to do it while keeping the roof over our heads.  It goes without saying that we've been able to see, first hand, just how devastating cancer can be to a family's financial security.

With the recent news that Philip's firm is transitioning to a new insurance company in a few weeks, we've been spending countless hours trying to assess the effects on my coverage.  While the actual benefits are quite similar to our former plan, the costs will be higher.  And, most important for us right now, they will not cover transplant-related housing.  I so wish that housing wasn't required.  I'd much prefer to be able to stay at home and recover with my family.  But, because of our distance to the UW Medical Center, it is an absolute requirement that I live in the city, no exceptions (believe me, I've tried!).  Our former insurance company granted us a generous housing allowance that would cover most of our lodging costs.  But that has now changed, and we are looking at having to fund over $10,000 for housing for the next 100 days.  With our moving day just days away, this has caused significant stress.

Friends have offered, from time to time, to set up a Go Fund Me account since my diagnosis.  We've politely declined because we felt that this was our responsibility, and that with our insurance coverage, we'd be able to sufficiently cover our medical costs.  However, we now have to set our pride aside, and ask for help.  It's not easy.  Sleep has been lost over this.  But I have to remind myself that the most important task at hand for us right now, beyond all else, is for me to exhaust any and every opportunity to extend my time here on this earth.  This transplant, while certainly not a guarantee of a successful remission, is my best chance at a few more years before we need to look towards the next treatment plan.  There are so many incredible therapies that are emerging on the myeloma front (many being studied and tested right here in Seattle)--I'm very optimistic that we'll have more and better options for treatment down the road.  The trick is to stay alive long enough so that I can potentially benefit from them.  That's my mission.  I don't want to leave my kids motherless while they're in elementary school.  Or middle school.  Or even high school.  The goal is to beat the statistics and odds; to take advantage of every treatment and myeloma therapy that I can possibly get my hands on.  I will do just about anything for more time.  Including asking for help.

We are so very grateful for our friends that set this fund up, and for each and every one of you who feel compelled to help us in this fight (click on link below to view the fund site).  The generosity of others is staggering.  I never thought I'd have to be on the receiving end of a fund like this.  But here we are, doing the best we can.  And we certainly couldn't do it without the help of all of you.  From the bottom of our hearts, thank you.

Karen's GoFundMe page




On the road to transplant.

Somewhere within this country, a very generous woman is getting ready to start a series of injections this week that will prepare her body to donate millions of stem cells.  These cells will then be put on a plane, flown to Seattle, and transfused to me on Thursday, June 16th.  I don't know much about her yet--only that she lives in the U.S. and has a blood type of A+, which will become my new blood type after transplant (I'm currently O+).  I also know that she is beyond benevolent to give her time and energy (and blood) to help me extend my life.  It's hard to put into words how grateful I am that she, along with the many other stem cell/bone marrow donors, are so willing to help those of us who desperately need it.

I've spent the past two weeks going through my extensive pre-transplant work-up.  I've had just about every x-ray, scan, MRI and blood test possible.  They've tested all of my systems:  heart, lungs, liver, kidneys, bones, teeth--you name it, they've looked at it.  Plus, meetings with nutritionists, nurses, pharmacists and doctors.  I have to say, they are extremely thorough.  Fortunately, everything has checked out well and there are no concerns.

This week holds more of the same.  We have my final data review with my transplant doctor on Monday to go over the aforementioned tests; I have surgery on Tuesday to remove my chemo port and "install" my Hickman central line that will be a part of me for the next 3.5 months.  I'm not at all looking forward to having a line again--it's not terribly comfortable, and makes taking a shower a huge annoyance.  The rest of the week will be spent learning about my conditioning chemo and radiation that will begin next weekend.  Next Sunday, they'll start my three days of chemo, Wednesday will be a "rest" day, and then on Thursday (the 16th) I'll get a dose of full-body radiation, followed by the transplant later that day.

We will be moving into our Seattle apartment next Saturday.  We're on the waiting list at the Pete Gross building, which is where we lived last September/October.  We're hoping an apartment becomes available soon, but in the meantime, we'll be staying at the SCCA House.  Their apartments are much smaller and not as self-contained as Pete Gross, but it will serve it's purpose until we can  move to a more long-term apartment.  Both complexes are designed for SCCA patients, and are a very short distance from SCCA, which is where I'll be spending a lot of my time.

Surprisingly, the transplant is considered an out-patient procedure.  Half of their transplant patients get through the process without any hospital time, which is encouraging.  Last time, I ended up in the hospital immediately following my conditioning treatment (before the transplant actually happened) because the chemo made me so violently ill.  This time, my conditioning chemo is much more gentle and shouldn't cause me problems.  Hopefully I'll be able to get through the first couple of weeks out-patient.  Once the donor cells start doing their job, they may start to cause some problems for me.  If I spike a fever, or have any severe graft vs. host (GVHD) issues, they'll admit me to UW Medical Center.  This process will be a lot different than last time, and there's just no way of knowing what issues may arise over the next few months.  They do a great job of educating us and informing us of the possible outcomes, but we'll just have to see what we're dealing with.

On the home front, things are going great.  My parents are here for the duration, the kids are busy with end-of-the-year school activities, and they're making their summer plans.  I know it'll be tough when Philip and I leave next weekend, but I also know they'll do great.  We're looking forward to many visits in Seattle as I start to feel better post-transplant, and we'll all just try to take one day at a time.  I'm grateful that I've been able to be here these past couple of weeks to enjoy school BBQs, carnivals, field trips, open houses and all of the other fun stuff that has been happening.  It's a fun time of the year, and we're lucky to be able to enjoy it together.


Starting over.

Today is the day we start over.  Stem cell transplant, round two.  I've been looking forward to getting to this point, but at the same time, dreading every single thing it means.  On the "good" list--we're moving forward, hopefully heading towards a more successful treatment course.  I'm being aggressive, which, from the start, has been so very important to me.  I have too much to lose to NOT be aggressive.  I'm receiving treatment at one of the premier medical facilities in the country, with incredible physicians and medical staff.  They found a willing donor for me (not an easy task!).  My amazing team of caregivers is ready for action--my parents arrived on Sunday, and are ready to take over kids/house/life management.  Philip has cleared his schedule (we are blessed that his firm is so compassionate and supportive of us and our challenges).  Things are lined up, and we're ready to tackle this.

On the "not so good" side is the emotional/mental side of the situation.  I'm dreading the next two weeks of pre-transplant tests, scans, meetings, labs, biopsies, etc.  That's hard stuff.  Not necessarily physically hard (well, the biopsy isn't much fun), but it's more of a mental hard.  Especially since I feel like I just went through this whole process.  It's a wearying process.  It's a big lead-up to a huge procedure.  With constant reminders of just how risky the procedure is.  I'm scared.  Scared that something will go wrong.  Scared that the transplant may work, but that the donor cells will wreak havoc on my body and cause other long-term, serious problems.  Scared that the transplant won't work.  Just scared.

I'm also struggling with leaving my kids for the summer.  We knew this was coming, and we know that it's necessary.  And the logistics are all in place for everything to work smoothly.  The kids will be blessed to have a fun summer with Nana and Poppi.  They'll get to have a few trips to Portland to visit the cousins, they'll go to Black Butte and the beach for quick get-aways, they'll make all sorts of fun memories, and will be in exceptional hands.  But, I won't get to be with them.  As a mom, that's beyond tough.  As everyone else is counting the days until school gets out, and making fun summer plans with their families, I'm having to say good-bye to mine.  This summer will be long.  And hard.  I'll be counting the days until I can return home in September.  We'll get through it, but I can't help but be sad about all that I will be missing.  Three months is a long time.  I'll get to see the kids here and there for visits, depending on how compromised I am.  We know the beginning few weeks will be rough, but we're hoping that once my health is stabilized, we'll get to have more frequent visits.  Time will tell.  And I know I'm sacrificing this summer to hopefully have many more summers with my kids.  But right now, this one looms large.  I'm sad, and a little bit resentful.  Ok, I'm a lot resentful.  Some days I just want to scream that it's not fair.  It's not.  But that's ok.  It is what it is.  And we'll get through it.  And we'll try to smile and find joy.  It'll be there, just not exactly how I pictured it.

Today I meet my transplant team and get the ball rolling.  The rest of this week is filled with a multitude of appointments--we'll meet my attending transplant physician, have various tests (EKG, chest x-ray), lots of labs, meetings with social workers, nursers, pharmacists, and others.  All important steps to get to transplant day.  That's the goal.  And we'll get there.

The Plan

I'm not good at waiting.  Especially when I'm waiting for a plan.  I've been a planner all of my life.  I specifically remember studying my high school class schedule, planning how I was going to get to each class on time, sometimes coming up with alternate routes just in case my first plan didn't work (I also have a serious problem with being late to anything--it stresses me out).  You can say I'm a bit Type A.  I love a plan.  I love to know what's coming up, and I love to be prepared for it.  Since my cancer diagnosis, I've had to relinquish control over making plans.  I quickly learned that I don't get to plan much of anything.  The planning has turned into waiting.  Waiting to be told when to be at doctors' appointments.  Waiting to be given a chemo schedule.  Waiting to learn if they've found a stem cell donor.  Waiting for test results.  Lots and lots of waiting.  The waiting makes me cranky and frustrated.  It makes me start to doubt the course of treatment that we've chosen.  It gives me too much time to worry about what's ahead.

The past few weeks have been a waiting game--waiting to hear about my one potential donor, and waiting for a transplant time frame.  In the meantime, I've continued my chemo protocol--I just started my third cycle this Monday and Tuesday.  This week has been a bit harder as they increased my dosage.  I'm definitely feeling the effects now.  My numbers are still looking very good and stable--no cancer cells detected in my blood.  They're still in there, but they're being held down by the chemo and aren't causing problems.  That's great news, and exactly where we want to be as we head towards transplant.

The waiting finally came to an end yesterday when I got a call from my transplant coordinator.  The ball is rolling, and once it starts, it moves quickly.  I'll start my pre-transplant work-up on the 24th--this consists of two weeks of all-day, every-day procedures and tests to make sure that my body can tolerate the transplant.  I'll have yet another bone marrow biopsy, full-body x-rays, cardiac/respiratory/pulmonary tests, dental exams, MRIs, and another surgery to remove my chemo port (I had a port put in my chest in early March) and replace it with a Hickman central line that I'll have for three months.  All of this should be completed in early June, at which time I'll start the transplant conditioning.  This involves getting a chemo infusion for three consecutive days, followed by full-body radiation, and then the actual transplant which is scheduled for June 16th (dependent on the donor being available that week).  It's a lot to wrap my brain around, and will be a very busy few weeks of preparation.

In the middle of all of that, Philip and I will need to move to Seattle.  Once again, we'll have to procure housing that is closer to the hospital and SCCA.  Unfortunately, we live about 15 minutes too far south of the city.  The requirement is that we must be able to be at the hospital in less than 30 minutes.  We can generally do it in 45 (not in peak traffic), but they're very strict about this rule.  This time, we'll be required to stay in Seattle for 100 days.  That's a long time.  I'm really struggling with having to leave my kids for that long.  I'll see them, but not at home.  I'll miss the entire summer with them.  I'm trying hard to not dwell on this because when I do, nothing good happens.  It makes me so sad to miss this time with them.  My transplant is scheduled on their very last day of school.  I know I have to look at this as a temporary challenge, and that by giving up one summer with them, I'm hopefully going to have many more summers with them.  But that's hard to do.  I know I won't get to see them every day.  They'll be in great hands with Nana and Poppi, but I want to cry every time I think about not being here to tuck them into bed each night.  And I do cry.  There will be lots of tears.  But we'll get through it.

So, we have a plan.  I feel better knowing that, but it's all very overwhelming at this point.  We've done this before, and I know that the key is to take one day at a time.  I have my wonderful support system in place--my husband, my parents, my amazing local friends who are taking great care of us, my faraway friends who are ready to hop on a plane and come to help out whenever needed.  We'll get through this, and I hope and pray that we get through this with good results this time.  It's very risky, and very scary, but if there's a potential for a long remission, then we need to give this a try.  I remain optimistic that this will help me get some of the years I so badly want.  That's what makes it all worth it.










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.