27 years on the 27th

Saturday - September 28, 2013

Taking a lesson planning break to enjoy a crisp glorious day and to remember our wonderful anniversary celebration last night:  27 years.  I walked down to Sausalito and met Joe as he came off the ferry from work.  We celebrated at Scoma's, sitting outside in the perfect weather, looking at Angel Island and the city in the day's golden last light, watching the seals and that perky, red-nosed Margaret Wise Brown-esque dinner cruise pass by, just soaking in a laid back delicious meal ...  Then we walked back up to our perch on the hill.  Life is good :)

... AND I'm sleeping better!

Sunrises over the Bay

Sunday - September 22, 2013

Another glorious early morning in Sausalito.  Reds and oranges herald the first sunrise of autumn, the bay is glassy calm, the superyachts are lit up just below our perch on Hurricane Gulch, and that full fabulous fall moon is bathing our bed in bright moonlight.  But how did I become an early riser?  Jonathan has said that I am still functioning on East Coast time and that comment may contain a grain of truth.  Even on the weekends, I am generally up before dawn and my weekday work schedule and commute mean that I have the chance to enjoy a spectacular sun rise as I travel north up the 101.  Waking to the alarm is a rare treat.

I don't think I ever re-established my deep-slumber, truly Olympian sleeping ability after being stricken by that lymphoma-induced migraine on 12/28/11.  Slicing horrible pain (I can never forget how bad it was) robbed me of sleep, then steroids first stole away my deep REMs, followed by the thieving chemo, mucositis, and hospital interruptions.  But what about those early mornings and brief slumbers when I was healthy and back at work in Williamsburg?  What about these consistently early starts here on the west coast?  Perhaps I am simply in a new pattern - anxious to not miss a perfect sunrise, grateful to have those found moments of calm in bed (without an alarm) where I can listen to Joe and the hounds slumbering away alongside me and I can take a deep breath and reflect on my great good fortune.  In the calm of this silent start to the day, I can embody my morning prayers of gratitude and thanks ... for family, friends, opportunities, experiences, and health.

Have I mentioned that I am happy?  SO happy to be working and engaged and present in the world.  Life is indeed fine (but still incredibly busy).  Work is engaging and satisfying; learning and fun are going hand in hand.  I love it, I love it, I love it, I love it!  Being in the classroom is energizing and inspiring.  How lucky I am to work in a job where I am utterly content and constantly challenged!  When I pause and consider why this work is so completely satisfying, I believe it comes down to  interacting with the broad array of young, developing personalities.  At Rock Spring, I loved meeting the children as babies, watching them discover their strengths and preferences, and seeing them develop their talents and follow their instincts over their four years at our school.  In third, first and now second grade, I enjoy that same rush of discovery as students stretch and grow, become comfortable, stock their intellectual and skill arsenals, and seek further challenges.  What a GIFT to be able to support their journey, to help guide them through any bumps in the road, and to witness their thrill and joy as they move forward.  I'm where I am meant to be, in the classroom ... and all is well :)

Best of all, I have no cancer updates to report  :)  My next oncology consult is 10/3 with scans to follow in mid-October.  Work is the ultimate salve.  Work in the rush of a classroom and with the demands of full student engagement means that I can sometimes forget that we are still "watchfully waiting."  I do have those moments of realization that "lymphoma may be lurking" but they are rare and only a blip in the course of my happy, full days with Joe, Megan, Jonathan, and supportive circle.

What a Difference a Year Makes

Friday - August 23, 2013

I can't imagine ever tiring of our glorious view

Although my energy is flagging in the midst of this final full-focus push to Monday's start of the school year, I need to pause and blog, to memorialize my awareness and gratitude for the stark difference between August 23, 2013's inclusion in life and participation in community and August 23, 2012's (rare) episode of tears on a generally frustrating day.  I was aware that a long-anticipated school year was starting without me and physically feeling the symptoms that would morph into an unexpected (and ninth!) hospitalization the following day.  And today?  Well, personally I am enjoying some comfort from yesterday's procedural lets-just-check-in oncology visit and professionally, I am enjoying the sweetest treat of all:  making connections with my new students and parents visiting the classroom for the first time.  What a difference a year makes :) 

A Better Kind of Summer

Saturday - August 17, 2013

Well, THAT was an improvement!  Summer 2013 was a definite upgrade from the neutropenic, chemo-filled, no-hair, collapsed-on-the-couch, hospital-centric, mucositis-afflicted summer of 2012.  Not that last summer harbors all bad associations.  After all, here I am. Under the care and love of Joe, Jonathan, Megan, and Carolyn.  With the hands-on support and emotional boost of my family, colleagues, and friends.  I survived.

Yet, it isn't saying too much to say that I prefer life as it is this summer.  Our children have regained weight and peace of mind, Joe and I are feeling more settled into California living (after a year's delay), I am embarking on a new classroom adventure in a fabulous community, and Andy Murray even won Wimbledon.  Yup.  Summer 2013 beat Summer 2012 hands down!  I continue to REJOICE in my migraine-free, single-vision life.  No constant crushing pain, no eye patch, no dizziness.  No uncertainty about an imminent Bone Marrow Transplant.  Am I still walking on broken glass every time I feel a speck of sweat?  Of course.  Does my stomach plummet if I think I might have the slightest twinge of a headache?  You betcha.  But another season has passed with my lymphoma still purged from my strengthening body.  Every clear month breathes more hope into my prognosis.  I am inching away from that Summer 2012 brink.

Summer 2013 is now officially over.  Jonathan and Megan have returned to their studies after a week of play, hanging out, and eating here in Marin and San Francisco.  Cancer was not hanging over us.  The fatigue and hair loss that branded cancer into our lives has receded.  I can hike and am not as visibly marked as I was even a few months ago.  We can push our concerns back into our minds and just focus on finding the best pizza in the area, watching the America's Cup qualifier, going to a baseball game, laughing at the hounds as they shake off the wind, and appreciate the vista from our perch above Sausalito.  Is there ever enough time to be with your children?  As they establish their independent lives and schedules, our time together assumes even more importance, truly precious time.  Only 14 more weeks until we see Jonathan (but who's counting?).... 

Summer's end is also measured by a full return to work.  In truth, I have been back at work, readying my classroom and lessons since we arrived in California.  17 days in the classroom and it is just about fully cleaned out and set up.  I have also been forging a cheerful and satisfying collaboration with a teaching partner with whom I share similar energies, passions, and point of view.  I am SO SO mindful of this gift of connection, opportunity, and community.  As Joe points out, I have always enjoyed great good fortune in finding a collegial community - ISG and ISB in Beijing, PPA in Hong Kong, PS 183 in Manhattan, Rock Spring in Arlington, and Matoaka and DJ  in Williamsburg.  I am excited to see what's next.

(Calmly) Resetting the Clock

Saturday - August 3, 2013

Thursday's visit to UCSF brought the comforting confirmation of last week's phone call from the oncologist:  the scans are clear; nothing has changed; no lymphoma is visible.  And THAT's a true relief!  Hurrah!  Normalcy is not just an illusion.  It's confirmed. 

What a nice ride home!

When Megan and I asked about port removal, continued anti-shingles medication, and - most importantly - how have the odds of relapse shifted from the 50/50 of last autumn, we learned that dates are all relative.  That is, my new oncologist is dating my current status from the end of my last treatment (Halloween) rather than VCU's dating protocol of from my "all clear" PET scan of early August.  Joe has his own dating standard of late May/early June when my migraines abated and my double vision vanished.  But dates are just dates and who really knows when I transitioned from cancer-afflicted to cancer-free?  It's a mystery at the molecular level and I'm just riding this welcome wave of restored good health and function.  So the port?  Well, the goal is to get it out when it is clear that it will NOT have to be surgically re-implanted.  The oncologist wants us to hold off until Halloween?  Fine by me  :)  

And, as for those odds ... every month of health and each round of clear scans improve the likelihood that my lymphoma is either beaten into remission OR upon relapse CAN be beaten into remission through salvage therapy.  My oncologist kept citing "presumed CNS involvement" in my medical records rather than definitive CNS complications so that's also very good news.  While I have always had some doubts about CNS involvement (dictated by the presence of lymphoma in my left eye socket  and trace lymphocytes in my initial spinal tap), I am grateful that we attacked my disease with CNS in mind, slamming it with methotrexate in reversed Hyper-CVAD rounds and then piling on two extra-intense methotrexate cycles after the initial protocol of six chemo rounds.  Whatever it took.  That being said, I do like the word "presumed" - it makes everything seem rosier. 

Last - but certainly not least - I do so enjoy when an oncologist uses the word "cure."  This lymphoma can be cured.  I like hearing that.  Say it as much as you like, doctors.  "Cure."  And that's the goal ladies and gentlemen.  Cure.  Health.  Many more years.

GOOD News by Phone

Phone call from my oncologist?! UH oh .... BUT GOOD NEWS! The MRI is definitely clear and although the radiologist has not yet written a PET report, the oncologist says it looks all clear to his eyes: "nothing lighting up, looks completely unremarkable." Oh, UCSF thank you for not making me fret for a week! Oh, new Dr., thanks for a phone call that brings GOOD NEWS! Oh, universe, thanks for my restored health. Oh, family and friends, THANKS FOR YOUR SUPPORT! I LOVE GOOD NEWS!!! Time to celebrate at the DMV  :)

Scanning By The Bay

Thursday - July 25, 2013

Yesterday was my first set of scans at UCSF and an opportunity to drive across the city.  The UCSF imaging center is at China Basin next to AT&T Park.  I may be jinxing myself here but San Francisco traffic cannot hold a candle to northern Virginia's morass and the I-95 crawl up to NYC.  Even when reports announce slow rush hour traffic crossing the Golden Gate, we do move along.  Nothing like the American Legion Bridge and the Beltway :)   So with that perspective, I flew happily across town:  NO back-ups AT ALL at 8 am.  NoVA traffic has made the driving world a piece of cake ....

Worlds collide in San Francisco :)  Such a happy jolt to see the crest!

Anyway, the scans themselves were different in many fundamental ways.  For example, gowns were required; my metal-free proven-to-be-okay-for MRI street clothes were NOT allowed.  Also, the rest time after my PET nuclear injection was not prone in the dark for an hour but sitting in a chair in a waiting room - allowed to read!  allowed to move!  That being said, given my VCU experience of repeated cautions not to move and create false activity readings, I sat very still reading my "New Yorker" taking care not to clench my hands or tense any muscles.  Even the MRI symphony of sounds was altered.  "The news" consult is scheduled for next Thursday, August 1.  Megan has said that she will try to come with me ... just in case.  I am phobic about getting any bad news alone in a consult with the oncologist.

But in the meantime, I am NOT incredibly nervous this time.  Am I tempting fate?  Or is this calm just a reflection and tacit acknowledgment of my body's return to normal?  I CAN say that I am extremely busy and distracted with preparations for school and with continued settling-in-to-dos in the apartment.  Joe provided an immediate distraction for me after my scans, meeting me for a delicious lunch at the Ferry Building.  I enjoyed a warm and wonderful walk along the Embarcadero before coming home to crash with fatigue; it must be all the contrast dyes as well as that useful nuclear tracer that cause me to have such an energy dip after scans.  Today brings more distractions from worries about "the news" as Joe has the day off and we are having a big date ... at the DMV :)

A Phenomenal Long Weekend

Monday - July 22, 2013

Combine Carolyn and Megan for a cheery joint birthday celebration.  Add in the pleasure of Chris' company.  Mix with many fine meals including Joe's introduction of a favorite North Beach pizzeria and Megan's hosting us at a familiar favorite in Davis.  Flavor with multiple walks around Sausalito, Fort Baker, San Francisco, and Angel Island.  Spice up the long weekend with many laughs about the unusual-for-us July weather, our success in figuring out the apartment's heating system, our triumph in jerry-rigging the dogs' access to the front yard, and Sadie's stealthy counter-cruising, food stealing and burying exploits.  What do you get?  Normalcy.  Happiness.  Diversion.  It's been a fantastic long weekend :)

Dodging a Bullet?

Saturday - July 13, 2013

Usually, I am very quick to post an update following a visit with an oncologist; sometimes I update from the clinic waiting to check out.  But obviously this time I have delayed 2 full days. Why?  It was a smooth, professional, pleasant, and all-good-news consultation.  For example, my next MRI and PET are already scheduled for July 24 with a follow-up for "the news" on August 1st.  In addition, I had team care, meeting with both an oncology fellow and my new oncologist and hearing that they had input on my scans and records from another more senior lymphoma specialist (I do love being cared for at a teaching / research hospital).  My vomiting episodes did not raise alarm nor did they trigger a clear to-be-expected-after-chemo response; my abdomen is scanned during my PETs and they rechecked my May scan and confirmed nothing of concern was evident.  AND the team fully agreed with both my R-Hyper-CVAD protocol, the additional rounds of methotrexate, as well as Dr. Ambinder's "sit tight" decision to NOT proceed with a Bone Marrow Transplant.

And there - right there at the end of the last paragraph - is the source of my delay in posting.  I am mulling over, digesting, contemplating, the oncologist's strong affirmation that I should NOT have gotten a Bone Marrow Transplant.  He stated - quite firmly - that Hopkins, UCSF, and other (what was the adjective that he used?  top?  elite? ) cancer centers are NOT advising Bone Marrow Transplants after achieving complete response from Stage 4 DLBC lymphoma.  If I relapse then have successful salvage therapy that results in another complete response THEN a BMT would be warranted but NOT after a first remission.

Joe said that I "dodged a bullet."  A potentially fatal bullet.  I am - once again - tremendously grateful, tremendously relieved, and a little bit breathless from dodging that BMT bullet. What if a donor had been available off the BMT registry?  What if I had matched?  Aside from the lethal dangers of cancer, the mortality rate from an allo BMT procedure is 1 in 4.  Yup, 25% from the BMT itself.  And then of course there is the graft versus host issue and the possible failure to graft and subsequent loss of immunity.  Bullet dodged.  Phew.  Bad luck can be good luck, I suppose  :)

Settling Into Our Perch on the Hill

Wednesday - July 10, 2013

Our view:  Belvedere and Angel Island

Today we celebrated many move-in milestones:

• The last of our moving boxes was broken down and put in the recycling!  HIP...
• All of my classroom materials are now IN my new classroom (after three car trips)! ... HIP...
• Joe and I enjoyed our first meet-at-the-ferry-then-eat-downtown-then climb-the-hill-home dinner!  ... HOORAY!!!!

Life on our Sausalito overlook is absolutely drop dead gorgeous; we can scarcely believe it.  The scenery is constantly changing.  Fog creeps over the hills to our west only to evaporate before our eyes in the sunshine and the wind.  The water and the light are everchanging with whitecaps alternating with surprising calm.  And of course, the birds, ferries, sailboats, barges, kayaks, and paddle boards always provide interest.  Living theater right outside our spectacular windows.

Happily, all of the furniture fits into our much tighter quarters, the "stuff" all has a home, and the closets are sufficient.  In fact, we have room to spare (phew!) particularly in the kitchen (which is officially the best we've ever enjoyed).  Driving up (and down!) the hill is becoming more routine, the dogs are somewhat less freaked out by the wind every day, and slowly but surely we are arranging all of our unboxed belongings.  Joe started at work this week and has commuted successfully by ferry, bike, and bus.  He is supremely content.  Life is GOOD!

Another sun spot for Baxter

This week, I have been thrilled to begin settling into school.  It truly is a fabulous environment with lovely, welcoming staff and an expansive, well-appointed classroom.  A splendid fit.  I am so happy to set down professional roots and to get prepped for students in a few short weeks.

Of course, hovering in the background (or "lurking" as lymphoma was first introduced to us in April 2012) is the nagging ever-present worry that somehow I am tempting fate with every box unpacked, taunting cancer with every instance when I forget my past illness.  My head knows I am well but my gut will no longer trust my head.  Tomorrow I visit UCSF for my first meeting with my new oncologist.  It feels a bit like a blind date so of course I will dress up (for me that's a low bar) and carry my "big girl purse."  The goal is to schedule my next series of scans and subsequent results consultation for mid-August.

I also need to discuss 5 incidents of middle of the night vomiting since March.  No nausea at all - just awaking, knowing it's coming, waiting about an hour, then emptying my stomach.  At first I thought it was an isolated bout of food poisoning but now with 4 incidents in the last month (and some reluctant googling), I think that I might be suffering some lingering effects of my chemo.  Needless to say, I am also obsessing about stomach cancer ... but nothing seems to corroborate that fear .... Best to consult with my oncologist .... Tomorrow ....  I need some reassurance ....

Our view north, across to the next ridge

Lastly, these last few weeks cancer has reared its foul head once again.  Megan's close friend from high school continues to battle her scourge-relapsed-lymphoma with salvage chemotherapy in preparation for a Bone Marrow Transplant.  Carolyn's dear friend has finished her chemotherapy only to now be suffering through her radiation treatments.  Mark has now been gone for 3 months and I hold his parents and family close in prayer as they endure a summer without their 12 year old.  And now a dear friend from our early days in DC is enduring treatment for an aggressive form of breast cancer.  I am railing at the universe with the injustice of this brutal diagnosis.  She is a physician herself who has been vigilant about annual mammograms and self-checks yet the mammograms missed the disease which has apparently been present for years.  Wretched disease.  Please hold her in your thoughts and prayers.  Her boys need her.  Her family and friends need her.  The world is a better place with her smile, laughter, and gentle heart.