HOSPICE UPDATE

One of Valerie's GREAT-nieces (in both senses of the word).
She was doing a dance for her lovely Great Aunt Val.

We officially entered into hospice care this past Monday (4/22).  I have had many chances to update the blog but have been so pulled between the imense vulnerability of this situation vs. your continued love and participation in this journey with us.  And so many of you contnue to text, email, facebook, etc. to check on us.  So I'm opting for an update.

As so many of you have aptly said, there really aren't words.  There's really no way to describe what this process is like.  I will say that I naively thought that Valerie would sleep peacefully with moments of clarity until she drifted off one last time, never to wake up again.  That is far from the truth.  I'm sure it's different for everyone, but for Valerie, there are many moments of sheer confusion - ex: she asks for an "ice cold drink" - I bring her some tea from the fridge and after her first drink she winces and says "that's really cold!"  After living with Valerie for the past 15 years, moments like these make me smile and say "I'm sorry baby, I must have misunderstood."

It's the confusing moments that seem to cause her distress that are harder to watch - forgetting how to stand back up and wondering why I'm not doing something; or mumbling something incoherent that makes perfect sense to her, but no sense to me.  Those are harder to watch because there's absolutely nothing I can do about it.  The most difficult part of this confusion is that she seems to have forgotten the decision to move to hospice care.  When she woke up Monday morning, it was as if she needed to keep fighting - she wouldn't use a walker or wheelchair even though she's been severely weak and wobbly on her feet - she is confused by the flowers and cards being sent - she doesn't understand fully what's happening.   That is the hardest of all. (I told her they are all belated anniversary gifts - our 15th anniversary was on 4/16 - and she smiled and nodded her head in understanding.)

It's an all consuming process, while having stretches of doing nothing but sitting by her side.  It seems like an ideal time to catch up on something, but I can barely manage to take the time to write this.  I've never had such long stretches of doing nothing.  I just watch her sleep and wait for a moment that she might look at me with some recognition and affection.  Valerie has always been much more introspective than me and it's always been a huge difference between us - she can sit quietly with just her thoughts, and I can do that too.... for about 2 minutes, then I'm watching somehting, listening to something, you get the idea.  She used to threaten to hide my iPhone after we first got them because I couldn't put it down. :)

For the past several weeks, different family members have been to stay and/or visit - all 3 siblings, Michelle, Sara, and Jon, and a niece Vanessa, with her youngest baby, Gabe.  Valerie has seemed to know all of them at different times of their visit and has been able to share a moment here and there.  Those are priceless.  Valerie has also been able to FaceTime with many nieces and nephews.  Those times with her nieces and nephews are the moments she's smiled the most.

In the hopes of reconnecting with some of our oldest and closest friends - even ones we haven't maintained regular contact with in the past few years - I sent out an email to alert people of Valerie's circumstances.  The responses have been so heartwarming and helpful for me - I haven't read them to Valerie, due to lack of comprehension or confusion.  But the comfort they have offered me has been immeasurable.

Lastly, for now, I want to say something about all of the kind words that people have said about my care and dedication to Valerie during all of this.  While I appreciate the kind words, I want to be clear about where that drive and devotion comes from... it is a reflection of Valerie.  She has inspired in me a love and devotion so deep and abiding that I never knew was possible.  So when you see the actions that come from my love for her, you see HER inspiration, HER dedication to us, and HER strength.  I am only priviledged to reflect it back in a way that I hope is comforting to her.

love to you all.

TO CONTACT VALERIE

Many of you post thoughts and comments here and on facebook - and Valerie sees none of those. I do try to relay them to her, but it's often overwhelming for me to just sit and read them to her.

If you would like to contact her directly, snail mail is probably the best way:
1575 E. Appleton St.  #16
Long Beach, CA  90802

That way, she can open cards at her leisure and enjoy them directly. xoxo

MORE DETAILS

I realized this morning that I had left out a chunk of details that many of you don't know about.
I started a blog entry at the beginning of the month with lots of details but never finished or posted it.

Over the past 4-6 weeks, Valerie has gone to some treatment, test or dr visit almost everyday. And in her severely weakened state, it's taken a awful lot out of her.

Then last week she was hospitalized for 4 days to try and figure out the fatigue and the numbness in her chin and lip. While we were at the hospital then ran a lot of tests. One of them showed that there is now cancer involvement in the lining of her brain - the menenges. That drastically changed their prognosis. And the only targeted treatment for the brain involvement is radiation. There was a lot of thought that while the radiation may extend her life a little, it would also make her miserable in the meantime.

So all of the doctors made their recommendations for treatment, we took a week to consider all options and Valerie has chosen comfort and some relief from the relentless chasing of health.  She still has some conflicting emotions about it because she has so much still to offer and experience.  But she has also began to experience some relief from the never-ending pills, visits, juices, procedures, and eating exactly the right thing.

Hope this helps - I realize for some of you it jumped awfully quickly from fighting to hospice.  Reality didn't really happen that way, I just couldn't keep everyone up to date.

Peace love and hugs.

THE WORLD IS UPSIDE DOWN

Valerie has spent the past 2 years battling not only stage IV breast cancer, but all of the associated complications - extreme fatigue, anemia, compromised adrenal and thyroid function, shortness of breath, dry itchy skin, sore ribs, hospitalizations, blood transfusions, countless MRIs and CT scans, endless needle sticks, trouble sleeping, and severely weak muscles.  While battling all of this, she has faithfully taken handfuls of pills, drank daily green juices, and schlepped all over Southern California and Baja California to fight for even just one more day.

Valerie has told me many times that she's not afraid to die, but she sure would still like to live.  But the past several months have not included a whole lot of living.  She's been pretty home bound and it takes every ounce of energy she has to walk down our stairs and get into the car - to go to yet another treatment, test or doctor's visit.  She's made the brave decision to move from home health care to home hospice care.

We will be meeting with the hospice providers in the next few days to see how they can help and provide a way for to live out her days in comfort.  She will obviously want to see loved ones but her capacity for that is very limited.  So please no surprise visits.  I will be coordinating friends and family visits around her wishes and abilities.

This probably goes without saying, but my heart is breaking into a million pieces every minute of every day.  The thought of losing my best friend, my confidant, my love, and my sweetheart is more than I can bear.  I have been the most fortunate person to have been graced with her beautiful presence for the past 15 years and I will continue to treasure every moment.