The Value of Just Hanging Out

Wednesday - December 31, 2014

Sometimes the best times are defined not by significant events but by the minutiae of the everyday.  Simply being with the people you love best sustains us - enjoying the ordinary pleasures of sharing meals, laughing over a new game, strolling a new town, dog-handling three pets  ....  Happiness is spending time as a family at Christmas.  Learning to knit, becoming ultra competent (and competitive) at Ticket to Ride, getting into "the mind of the judge" in Apples to Apples, and taking full advantage of every opportunity to laugh and eat and have fun.  Together. 
Merry end-of-2014 and Happy 2015! 
Here's to more family time in the new year!

Precious and Rare Days

Our 4th is behind the lens

Sunday - November 30, 2014

Megan is currently on her way back to Davis and yesterday Jonathan returned to Virginia after a short but fulfilling 48 hours of family Thanksgiving togetherness.  As the children successfully engage on their independent trajectories, these interludes become less frequent, tremendously precious, and carefully guarded.  Our farewells are easier this time around since we will be reconvening with board games, hounds, and family for a Christmas vacation in only 3 short weeks. Yeehaw!

I am also feeling refreshed after a month of waiting for - and yes worrying about - additional scans and tests to deal with a troubling Oct. 23 mammogram.  Yes, I have had flagged mammograms and even positive PAP tests in my pre-lymphoma days but somehow in my new post-cancer incarnation, the uncertainty of those inconclusive, "can't be cleared" tests weighs heavy.  After all, prior to every intrathecal (spinal tap) chemo and upon admission to my many in-hospital chemo stays, I was duly informed that my treatment might result in leukemia or - wait for it... - lymphoma!  HA!  We actually always laughed about the irony of the situation as I signed form after form after form, time after time after time.  I confess that with the news of the "concerning mammogram", I worried.  It nagged at me....

So our happy foursome gathering soon after my "all clear" felt a bit like a celebration :)  But then again, it always is!

Bamboo Blues

Thursday - October 23, 2014

Today felt a bit like time travel when I entered the newly remodeled UCSF Hematology clinic for my quarterly consult (and consoling hand hold from a professional).  See that bamboo grass-infused laminated glass over there on the left?  Well, if cancer has a specific decor, in my mind this is IT.  My stomach truly dropped when I walked into the clinic's new digs and saw those frosted and clear room dividers.  Slammed in the gut.  Immediately, I was sucked into a vortex of memories from all those many many visits to VCU's Dalton Clinic with its EXACT same bamboo grass-infused laminated glass.  Times when I could barely stand up and walk to get my vitals checked.  A visit when I knew that I would not be allowed home that day but would be deemed neutropenic and ushered upstairs to a sterile hospital room.  Visits with husband and children and sisters. Autumn and winter visits where the healthy people who I first saw in April 2012 were now in wheelchairs.  That bamboo witnesses much terror, pain, disfigurement ... and caring, hope, and love (I need to focus on the latter).

I woke up today prepared for a trio of medical appointments (mammogram, infectious diseases intake meeting, oncology consult) that were simply routine -- procedural -- nothing to write home about since I am fully asymptomatic of lymphoma ... But then... a little bit of redecorating - some pretty panels of free form bamboo - kicked me in the teeth. So...  it was a long day at 2 UCSF campuses.  My plans for super productivity in the late afternoon have evaporated.  Instead, I have cuddled with the dogs and walked outside on eucalyptus lined roads here in Sausalito above lovely Richardson Bay.  My goal is to replace bamboo memories with eucalyptus reality.  So far so good.  Time for another walk....

Summer Memories and Autumn Dreams

28th Anniversary breakfast at Fort Baker.  Yum.

Sunday - September 28, 2014

I think that I can state with perhaps 85% confidence that my scourge lymphoma is retreating onto the back burner of my consciousness.  Yes, perhaps "the emperor of all maladies" has robbed me of true peace of mind and does occasionally ambush me with ferocious inhumanity.  For example, in August my first ever UTI  had my emotions convinced that I was symptomatic of uterine or cervical cancer when my intellect knew that it was just a (very uncomfortable) UTI.  I suppose cancer is indeed a thief that steals our complacency and assumption that "all is well."

However, think about that....  The flip side of this hyper-vigilance is that I feel even more aware and appreciative than my pre-lymphoma self.  Reveling in time with children and husband, happy for summer visits with sisters and friends, content with our cheery and needy hounds, and working to see the positives and eliminate the stresses where I can.  I am loving our new cadre of second graders and excited to see those wonderful now-third graders who made life so fun last year.  The hills are gold outside my classroom window, Richardson Bay shines in the sun outside our apartment windows, and we are loving the fresh air and ocean breezes in Marin.  Life is very very good.  I am grateful for health, for connections, for time ....

Back on the Meds!

Watch for the number!  A new system made it a crazy morning :)

Monday - August 11, 2014

Well, all in all, the "off the meds" interlude was quite brief.  After one week without the antacid, I was awake once more in the middle of the night fighting to keep my food down.  Then Saturday, a week's worth of discomfort in my lower back and groin morphed into shingles.  Yikes!  There's no mistaking shingles!  Who knows if the back pain and the virus are linked but 23 days without Acyclovir was enough of a window to allow the zoster virus to re-emerge into a bloom of blister stripes.  We knew I was somewhat vulnerable since my childhood bout of chicken pox had blossomed as shingles when I was 25.  Somehow my previous thyroid issues had also signaled an alarm.  But 23 days was indeed quick; I was scheduled to get the shingles vaccine this week ... too late :)  Very very uncomfortable.  Happily, UCSF had a Saturday morning clinic where I rushed for a consult and a scrip for heavy doses of Acyclovir.  I am on a week's course of antivirals, going back to the hospital for intermittent blood draws to check for adverse liver interactions.  Today's blood draw signaled elevated liver enzyme levels that are above normal but still within my historical levels.  So all looks good.  As for the shingles?  Ouch!

Off the Meds!

Thursday - July 17, 2014

Today's periodic oncology consult ushered in the latest phase in my recovery: getting off the last of my medications.  So long to my prescription strength antacid!  We'll see if the GI issues of last year have healed and determine if I can eat (and retain) food without prescription assistance.  So long to Acyclovir!  This anti-shingles medication is continuing its negative impact on my liver enzymes (still elevated today).  Rather than continuing the Acyclovir-induced liver damage, I'll probably opt to have the shingles vaccine in the next few weeks.  Shingles is a concern because I actually had a (stress-induced?) bout of shingles the summer of 1986 while working in Taiwan and prepping for our September wedding.  Our post-consult homework is to research the shingles vaccine.  UCSF has administered it to 90+ post-Bone Marrow Transplant (BMT) patients with no adverse effects.  Given the fact that my immune system is stronger than these patients, I should be able to avoid negative impacts.  We'll see ....

My oncologist continues to help me "unring the bell" about moving forward -- BMT-free and scan-free -- with hope and optimism.  My former medical team insisted that an allogeneic BMT was my best treatment option for long-term remission and cure. This plan was confirmed by a second opinion and is in accord with established and recently-affirmed national protocols.  Having absorbed and accepted this information, the lack of follow-through continues to nag at me.  I accept and welcome this gift of procedure-free living.  But I remain vigilant.  "Watchful waiting" doesn't take a holiday.  Someday I'll be able to feel a flash of warmth or clamminess and not feel that twinge of worry.  Someday ... but not quite yet.  Next steps:  shingles vaccine decision and continued bloodwork every three months to monitor markers that might signal a relapse.

All in all, that's a reason to celebrate!!  Every month that passes without relapse signals a better prognosis. By some measures I am now 2 years NED (no evidence of disease).  By my oncologist's timetable, I am now 1 year, 9 months disease-free since my last chemo treatment came to an end.  By my own measure, I am now 2 years and 2 months beyond the dysfunction and disequilibrium of unrelenting pain and double vision.  By any count, I am still in the clear and life is very VERY good :)

First Day of (my) Summer!

A pattern block eaglet courtesy of some splendid 2nd graders!

Friday - June 20, 2014

As of 3:45 this afternoon, summer has officially fledged!  Yes I may be referencing the onset of summer as heralded by all three of the Decorah eaglets having fledged as of this afternoon (!), but I am also officially and EXPLICITLY in a quieter mode after finishing 3 days of math professional development at 3:45.  Since our amazing second graders wrapped up class 2 weeks ago today, life has been chock full with:

• a visit with Jonathan here in the Bay area
• packing out of my classroom
• 2 days of workshops and meetings at school
• travel with Jonathan to Dulles
• moving Jonathan into his new Arlington apartment (read lots of unpacking, Ikea shopping, furniture hauling, furniture assembly etc.!)
• visiting Rachel and family in Winchester 
• meeting Megan in Philadelphia and traveling with her to visit Joe's mom in Pennsylvania
• visiting with many family and friends in Northern Virginia
• and then returning to San Francisco to wrap up this 2 week frenzy of action with 3 (very interesting) days of math training.

Megan and Maureen

I am ready to regroup ... relax ... and restock my energies.  With that goal in mind, I aim to embrace my summer.  I plan to contain most of my work / prep for next year to 1 day a week over the summer.  While Joe has not complained, it has been a nonstop year of work and I think that I need some downtime in order to ... breathe, think, sleep, and regain some balance in life :)  It's time to do some work at home, to enjoy my family, and perhaps just to curl up with the dogs and read.  Wouldn't that be glorious?

Oh, who am I kidding?!  I have too much fun prepping and that math training was absolutely great - so inspiring!  Exception to the rule:  surfing the net and prepping materials on my computer at night won't count against that 1 day/week goal  :)

A Manic Month

At least the hounds are relaxed (most of the time)

Saturday - May 31, 2014

Better to be busy than bored but ... we have been going flat out all month and it doesn't look like we'll return to a normal rhythm until June 27.  Yes - June 27.  Joe's May 5 trip to DC initiated this manic period and over the next 4 weeks he and I will be continuing a very unusual schedule where we are alternating travel back and forth.  It's probably one of the oddest intervals we've had in many many years!   Highlights have included Megan and me traveling east for Jonathan's Virginia Tech graduation, seeing my sister Rachel in Blacksburg,  and Joe and Jonathan's current midwest Major League Baseball 9 ballpark tour. Upcoming events include the end of my school year (and perhaps a resumption of restorative sleep patterns!), another east coast trip to help move Jonathan into his Arlington apartment and to see Joe's mom, and then seeing Megan off on her summer travels to Kyoto.  With all of this commotion, I am marking my calendar for the 2 days and 3 nights that the 4 of us will be all together here in our perch on the hill.  One of the kids will be camping out on the living room couch as we cram into the apartment but it's precious time.  We'll savor it!

2 Years (and counting...)

Sunday - May 11, 2014

Finally, my long diagnostic journey ended 2 years ago today with an after-hours phone call from my new oncologist.  He used the words "stage 4" as well as "cure" in that conversation. Carolyn and I were taking careful notes so we could share details with Joe, Megan, and Jonathan, all of whom were spread out across the continent and awaiting the news.  Today - 2 years after that horrible news/ hopeful news telephone call - Megan and I walked around the Whole Earth Festival in Davis where she had wandered around waiting for that final cancer verdict on May 11, 2012.  What a difference to traipse around together on a perfect northern California spring day exploring the craft booths, vegan dining, drum circles, and hula hoop / hackey sack diversions.  No migraines.  No double vision.  Just the opportunity to enjoy another interlude of small pleasures and family company.  Another great day of loving being a mom! 

I am certainly not going to use the "cure" word anytime soon BUT it is comforting to know that my oncologists hold it out as a possibility and that my odds improve with every month of "No Evidence of Disease."  So here's one happy mom on Mother's Day.  Grateful.  Healthy.  Thrilled to have had these 2 years and wishing for many more.

An Unscarred Liver

Saturday - May 10, 2014

Dog walks are fabulous excuses to drink in this phenomenal view!

It has been a quiet week of alone time with the hounds.  Joseph is away on travel and I am hunkered down prepping for the upcoming trip east with Megan to celebrate Jonathan's second (and last!) graduation from Virginia Tech.  Substitute plans and two weeks of advance class preparations have kept me focused and grateful as I approach tomorrow's "diagnosis day" milestone. I revel in my ability to see out of both eyes and to live migraine-free!  To have regained my health!  Hurrah!

Peace of mind has also come in the form of good news from UCSF.   My liver specialist writes that "I reviewed the pathology and the biopsy did not reveal any specific diagnosis. This is good news and makes me suspect drug-induced liver injury as the cause of your liver enzyme elevation. Are you still taking acyclovir? I have seen mild liver enzyme increases with acyclovir. Importantly, I did not see any evidence of scarring (fibrosis) on the liver biopsy that might have come from your prior high-dose methotrexate use.  And good news - your liver enzymes went down too!  But now we know for the future that, in the absence of significant scarring, we can be more "tolerant" of liver enzyme elevations if they occur again in the future."  So .... that sounds like we're simply not going to worry about those enzyme numbers anymore, yes?  I await confirmation that we are now in "watchful waiting" mode #2 for my liver.

Waiting is preferable to treatment.  I'll take it ANY day!