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.