Thankful for our 4some :)

Our Thanksgiving hike up the hill behind the house.  What a VIEW!

Saturday - November 30, 2013

So thankful for Thanksgiving hanging on through the beginning of the weekend!  First we enjoyed our laid back Thursday with our first Thanksgiving meal together since Megan's last year at William and Mary in 2009.  Add some collaborative cooking with Megan, a hike up the Headlands behind the house, and a round of Catan, and you end up with the perfect family day.  Then, our holiday was extended by United Airlines' poor communication about Jonathan's change in Friday's flight schedule.  The error caused a flood of adrenalized panic but eventually gifted us with an additional two days together - free of charge.  We'll take it!  Thanks very much!  The gift of time was shared with our Arlington friend and petsitter extraordinaire, Elizabeth, who joined us on an outing to Tony's in North Beach;  Jonathan ended up getting his sought-after meatball when he could have been sitting on an airplane.  Sounds like a fine trade-off, all in all.

The mystery of my epic stomach discomfort continues.  In fact, it might have accelerated this week.  Joe and I ponder the possibilities and we just can't nail down an instigating event.  Mozzarella or burrata?  Up until last month that had been the theory but not anymore.  Restaurant food?  Nope.  I was sick on my standard homemade pesto last week.  Rich food?  Well, I was up at 3:30 this morning battling my belly when I had only eaten plain rolls and a bit of salad for dinner; our North Beach meal had been 15 hours prior to my  turmoil.  Funnily enough, I was absolutely fine on Thanksgiving.  The methotrexate definitely did a job on my liver.  My AST and ALT liver enzyme levels remain double what they should be.  Next steps:  a consult with a liver specialist and an ultrasound.  If she can't link my increasingly frequent nuclear, jaw-jarring stomach-emptying to my liver levels then ... I am back in "medical mystery land" and I ... LOATHE ... MEDICAL ... MYSTERIES.  As I repeat to myself in the black of night, reviewing my meals, feeling a bit clammy (is it a NIGHT SWEAT?!) and pondering my stomach options, "the scans are clear.  The scans are clear."  That mantra is my Thanksgiving.

Together for First Anniversary of "Ambinder Day"

Sunday - November 24, 2013

Yup, commemorating another milestone; it's been a year since that amazing / shocking trip to Baltimore where Hopkins' Dr. Ambinder rebooted my treatment plan.  An imminent Bone Marrow Transplant was shelved,  "watchful waiting" was endorsed, and we were to resume our interrupted lives.  All of a sudden, we were breathing again.  Hospital incanceration was no longer on the schedule.  Was I cured?  No way.  But "Complete Response" was tattooed on my virtual medical chart and I was free to carry on as usual....

I remember coming home and Joe beginning to plan a Christmas get-away, seizing the opportunity to travel as a family now that I was safe to face the germs and immune challenges of planes, crowds, and life in contact with human beings.  We talked about when I would be strong enough to return to work, how quickly we could travel north to see Joe's mom, and whether we might now resume our plans to move to California.  And now here we are a year later in Sausalito, happily working, enjoying our view from our perch on the hill, and relishing our week of hosting the kids for Thanksgiving after 14 weeks apart....

Blessings.  Gratitude.  Happiness.  Life is oh so good. 

At Rodeo Beach - 10 minutes from the house!

Entering a New Phase

Celebrating with a quick meal at Cavallo Point

Thursday - November 14, 2013

Today's oncology consultation was a wonderful affirmation of all those warm fuzzies that come from discussing no-drama, completely clear, lymphoma-free scans.  YAY!!  Big sigh of relief.  Joe visited UCSF oncology for the first time, participated in the opaque routine of where to put what (in unmarked trays and envelopes) for blood work and vitals, and met my very approachable and reflective oncologist.  In our meeting, we cleaned up a passel of loose ends:

• my scans are now down from every 3 to every 6 months (next scan in April 2014),
• my port is coming OUT (sometime in the next few weeks, date TBD),
• my liver enzymes remain curiously elevated so I am scheduled for a liver ultrasound in the next month, and
• my episodes of nuclear nighttime vomiting are probably NOT a symptom of mozzarella-induced lactose intolerance but are also certainly not a symptom of lymphoma (read: who the hell knows what is going on but maybe it's linked to my liver enzymes; next stop = hepatology).

All reassuring good news. Any (teeny tiny) grains of sand in the vaseline are linked to the repetition of UCSF's view that a Bone Marrow Transplant would NOT have been an appropriate next step in my Stage 4 Large Cell lymphoma treatment plan and that any relapse means an autologous BMT (with its 5% mortality rate) rather than an allogeneic BMT (with its 25% mortality rate).  Say what?  Auto not allo?  Isn't this the conundrum that we faced in July 2012?  I am truly unnerved by how close we came to that allo BMT from VCU.  If I had matched anyone from the registry, I would have ceded my bone marrow to chemo and just rolled right into that high-risk procedure with God knows what outcome....  And mind you we had a second opinion from another esteemed cancer center that allo was the way to go!  Thank you, thank you, thank you Dr. Ambinder at Johns Hopkins! 

So, I embrace my good fortune! I drill down on my gratitude and relief!  I reflect on my amazing great luck.  Friends, community, work, and FAMILY.  That dangerous allo bullet was dodged.  I am healthy, happy, relishing the gift of this BMT-free year, and excited about launching this next stage of health. 

And the Milestones Keep Coming!

Friday - November 1, 2013

Joe and I have been parsing the lingo of this milestone and I will defer to his language:  today marks 1 year since my last in-patient hospitalization, the end of my chemo, my last departure from the kind supervision and attentive care of the staff on CCH2, VCU's Acute Care Oncology ward.  So - by UCSF standards - today I am officially one year clear :)  I do so enjoy racking up these milestones - bring 'em on!

12 hospitalizations in 6 months.  Priceless.