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'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.


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.