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.