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.