"All Clear" and Swooning with Relief

Monday - October 28, 2013

"Your scans are all clear" and "everything is perfectly normal" infuse true energy.  My relief is completely tangible - I tingled from toes to ears as my body relaxed? released adrenalin? celebrated with an electrical outburst? Happily, I was sitting down in the car having just emerged from the market on my way home from school.  If I had been driving, I would have had to pull over ....

Well, it is truly one year now, even by UCSF's measurement.  One year since my last treatment without a relapse of this stage 4 scourge.  One year and 3 months since active lymphoma was extinguished from visibility on current-technology scans.  Seventeen months since "the particularly nasty chemo protocol" of Hyper-CVAD gifted me with migraine relief and restored vision.  One year without allogeneic Bone Marrow Transplant and its risks.  One year of feeling grateful and strengthening and enjoying my days.

Thank you everyone for your words of support and acts of kindness.

Next steps will be decided when I consult with my oncologist on Nov. 14.  As for my port?  Well, if that proverbial green light is lit, then "Bye-bye!"

Muddy Distraction

Megan is a (muddy) fundraising warrior in gorgeous Yolo County!

Sunday - October 27, 2013

As an optimist, silver linings can be found everywhere - even in cancer....  I suppose that one of the most obvious positives in our initiation into the cancer club is our heightened awareness and support of cancer research.  Relay for Life and St. Jude resonate much more personally these days.  Last April, I visited Jonathan at Tech for a profoundly moving Relay for Life that seemed to mark an affirmation of my return to work and readiness for our move to California.  Yesterday, Megan's Warrior Dash Fundraiser not only provided a welcome distraction from this long wait for my latest scan results but also marked Megan's passing the $2000 mark in her fundraising efforts this year.  Thank you, THANK YOU to everyone who donated!  Megan ran up hills, hoisted herself over walls, and slogged through mud to raise funds for pediatric cancer research.  Her proud mom soaked up the ambiance if not the sun (I staked a spot in a scarce corner of shade) until I went on camera duty when Megan emerged from the fire pit jump and dove into the mud pit.  As a top fundraiser, St. Jude gifted Megan with a public hose down followed by a private portable shower :) 

Reading the (Lack of) Tea Leaves?

Waiting (for dinnertime or for test results) can create anxiety

Friday - October 25, 2013

Waiting ... waiting...  waiting ....  But NO news.  What does this lack of news mean? 
Is the oncologist not in the office? 
Have the results not been read? 
Or is it bad news and ....
Well, my oncologist said he would phone me one way or the other
so ... therefore ... I may infer ... I can guess ...
that there is no news yet
or no one to deliver it. 
But I'm not freaking out or overthinking ... yet.
Am I?

Thank God I am working in a happy job where I am "in the moment" for the vast majority of the day.  Otherwise I would go absolutely ... CRAZY!

A Familiar Routine

Monday - October 21, 2013

Details may be different but the routine remains the same....  Hands above my head or strapped to my waist straight-jacket style, the PET scan always proves irresistible for a nap underneath a warm (sometimes hot blanket)....  And either in my own carefully selected metal-free outfit or the UCSF mandated multi-part green gowns, the MRI remains a loud raucous hour where I find myself counting the beats and wondering about the reasons for the different rhythms, pitches, and decibals.

Details, details ....

Yes, it was scan day once again.  "Watchful waiting" means that every 3 months I load up with contrast via IV and enter into the multimillion dollar machines that peer inside me looking for masses, tumors, and any other harbingers of lymphoma activity.  I'm not sure if it's angst, hunger, contrast-reaction, or a general undercurrent of fatigue but I always get home ready to snuggle the hounds and grab a late afternoon snooze.... Tired.

The oncologist should be in contact this week with the PET and MRI results.  Then it's decision time.  Either we're back in chemo action against a relapsed disease OR -- let's hope -- we're retrenching a bit by removing my port and lengthening the time between scans to 6 months.  Tick tock.  Can't wait for the call.  I just can't stand the waiting....

All Seems Well (... but let's check that liver)

Thursday - October 3, 2013

Today's check-in with my oncologist meant a noon visit to the UCSF clinic in the city.  Having juggled my schedule with very supportive colleagues, I left my students with familiar teachers rather than a substitute and got in the car at 11 to head south down the 101.  Many positives came to mind as I headed in for this let's-hope-it's-banal visit:

• I am feeling just fine.  No symptoms  prompted this trip.
• This commute is even closer than that familiar trek to VCU - and of course - I reap the happiness that comes from traversing the Golden Gate, viewing the crystal clear city from the Marin Headlands, and taking in the great architecture as I head up to Parnassus Heights.
• Every month ... week ... day! ... that passes without relapse brings me a bit more hope that this dread lymphoma might have proven defeatable or might be banished once again if it does indeed recur.

So, my port is now newly flushed on both sides, my vitals are confirmed as normal, no lymph nodes are palpable and worrisome, and my blood work shows... - RATS!  Again, a small blip on the health radar screen.  Those pesky liver enzymes continue their downward trend but remain elevated.  Yes they are on the decline but they have not returned to normal after last autumn's 2 rounds of high-dose methotrexate.  Just to be sure that my liver inflammation is methotrexate-induced and not a symptom of anything else, my oncologist is referring me for a liver ultrasound and follow-up with a specialist. This procedure will be scheduled for my next scan day:  on Oct. 21, I will be getting my next PET and MRI scans as well as this liver ultrasound.  It will be a full medical day :)

In anticipation of those scans, we discussed possible options IF the scans continue to be clear.  At that point, I may go to scans every 6 months and will have the option of having my port removed.  Hmmmm.... my love / hate relationship with the port continues. Yes, I want it OUT.  Who wants a foreign object in their body with a direct link to your aorta?  However, once it's out, I cannot imagine how devastating it would be to have to get it reimplanted for treatment in case of a relapse.  Relapse made real.  I need to think this option through carefully.... but let's get another clean scan first.

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.