Farewell to UCSF Oncology

Fabulous vista.  Who can spot the Golden Gate bridge?

Thursday - May 14, 2015

Today was my last quarterly check-up at UCSF.  These 2 years, I have felt well cared for and included in my care decisions at UCSF Hematology.  I believe I have had thoughtful care from a collaborative and reflective teaching hospital team.  The conversations feel like dialogues rather than pronouncements.  They also go the extra yard to treat all of my immuno-compromised self.  A perfect example is today when I presented with one of my epic going-on-6-weeks upper respiratory illnesses.  Although I had been to the UCSF clinic on Tuesday for this nasty, horrible cough / cold, the oncology clinic did a full work up on me - again! - and then referred me for a pertussis swab (despite an absence of whooping)  "just to rule anything out."  Today we also discussed transferring my care BACK to VCU and my original oncology team.  Carolyn had suggested I travel south to Richmond every few months rather than finding a new team in the DC area.  My UCSF oncologist agreed that this plan made a lot of sense and then presented his view on future decision points e.g., scans and bone marrow transplants.  We also agreed that if things head south, I skedaddle up to Johns Hopkins.  Sounds like a plan.  Now it's time to start transferring all of my records - another indication that our move is in full swing.

Wonderful News but ... Still Too Raw to "Time Hop"

Friday - April 24, 2015

Today is a glorious day for our sweet Megan!  Her plans for year 6 of her 7 year PhD strategy have come to fruition with a Fulbright Award to study at Nanjing University.  She is relieved and happy, happy, HAPPY! And of course Joe, Jonathan, and I are proud (but not too surprised!) family cheerleaders!  After all, one could say that Megan is an inspired, creative Dragon baby with the nose-to-the-grindstone tendencies of her Ox parents.  She is ready to tackle those Nanjing archives, learn the erhu in her spare time, and write, write, write!

And in the midst of this swirl of positivity -- there it is .... in the not-so-far back of my mind, I think "thank God, I am here WITH HER when she got the news."  Not just "here" in the sense that we happened to be together in the San Domenico faculty workroom when she opened the email, but "here" as in "still alive" to see our girl glow with happiness at a long wished-for goal attained.

Wow.  That sense of "almost" never quite goes away and this highly recommended "On This Day" Facebook app confirms recent history.  Three years ago today might have been my absolutely most excruciating point of pain.  I literally crawled up the stairs into bed ... and got up the next morning to the salvation that was my first grade classroom.  Unbelievable.

"Christine Ammirati

April 24, 2012 at 7:02pm · Williamsburg, VA ·

Shattered. A head MRI with a bone-crushing headache is immeasurably worse than a head MRI while on prednisone and a manageable headache. Taking emergency pain med, curling into a ball, and hoping for deep, healing sleep.

17 Comments

So... time to disable this well-intentioned app, cuddle up with our amazing girl and the dogs, message Jonathan with laments about the Mets, feel grateful, and be in the moment.  It's still too soon to have surprise looks back and that day in particular still seres.

Virginia Dreamin'

Tuesday - March 31, 2015

This classroom view will be missed!

We are once again in countdown mode to yet another move.  The reality of our return to the familiar faces and environs in the Arlington area softens any discomfort or frazzle.  We are headed home!  Our lease is up at the end of June and on that day or soon thereafter Joe, the hounds, and I will turn the VW eastward and head off to the muggy and comfortable neighborhoods of northern Virginia.  Given that our days are ticking off steadily, we are now tackling the tasks of selling our Williamsburg house, buying a house in Mclean or North Arlington, prepping for our physical pack-up and move, and finding a happy new school for me to call home in Northern Virginia.

Another necessary task is finding an oncologist.  UCSF has been an amazing experience.  I feel regret at leaving my medical team behind.  So what's next?  I am toying with the idea of going in full steam at Johns Hopkins since it will be my medical recourse if I relapse.  However, Joe advocates for optimism and avoiding the round trip to Baltimore.  Another box to tick off as we organize our departure.  Do I choose convenience or top of the line Hopkins experience?

Shingles Vaccine: Take 2

Wednesday - February 25, 2015

This summer's shingles vaccine attempt was not successful when I surprisingly came down with shingles (ironic) during the time interval meant to clear my system of the anti-shingles meds I have been on since the start of my chemo in May 2012.  Acyclovir prevents shingles outbreaks and therefore would not allow the live zoster vaccine to take hold.  Obviously that three week time interval was too long.  However, Acyclovir may be impacting my liver and my team wants me OFF it.  Thus the need for the vaccine. 

Take 2:  After MUCH consultation, my oncology / hepatology / infectious disease medical team has come up with the plan of taking me off shingles-fighting Acyclovir for 1 day, administering the live vaccine on day 2, staying off Acyclovir for an additional 2 weeks to allow the live vaccine some time to take effect, and then to resume Acyclovir for 3 months.  After 3 months, I will go off Acyclovir BUT carry mega doses on my person at all times in case I feel any symptoms of a shingles outbreak.  In July / August, my first symptom was back pain shooting down my leg.  I simply thought I had pulled my lower back lifting or carrying.  My doctors seem rather confident that I will be able to identify a recurrence before the zoster actually blisters up.

The overall idea is to equip me with as much protection as possible for ... life in general and ... in case I relapse.

So today was the day.  Shingles vaccine has been administered and ... we'll see....  No Acyclovir for 2 weeks and looking out for vaccine reactions over the next few days.

Check-In and Next Steps

Thursday - January 15, 2015

A full day at UCSF has confirmed my apparent continued good health and NED status.  When I asked about another round of scans to get a glimpse inside the mystery that is our body, my oncologist affirmed that he sees no reason to undergo another round of PET and MRI scans.  The high radiation is a risk in itself and 2 years 4 months after the end of my last Hyper CVAD round, I remain asymptomatic - no drenching night sweats, no debilitating fatigue, no bone pain, NO vision issues, and NO HEADACHES; I remain highly sensitive to my months of horrific migraine-esque torture.  Believe me, if I were ever to get even the slightest twinge along my trigeminal nerve, I would be immediately attentive and have PTSD flashes.  So watchful waiting continues.

Today also welcomed another member to my team:  Infectious Diseases.  I have warm feelings about this specialty since it was VCU Infectious Diseases that actually first raised lymphoma and ordered tests that ultimately led me to diagnosis, pain relief, and successful (to date) treatment.  Our current task is focused on shingles.  We are trying to weigh continued daily Acyclovir to suppress shingles versus the drug's possible role in elevating my liver enzymes.  Do I discontinue Acyclovir and risk the shingles vaccine and its rare but severe side effects?  The vaccine would boost my arsenal of ammo in case of a lymphoma relapse.  However I could stay on Acyclovir for life on orders of my oncologist and infectious disease specialist and against the recommendation of the liver specialists.  Furthermore, can I stop Acyclovir in order to clear my system before receiving the live virus shingles vaccine?  Last time we tried that, I broke out in shingles within a few weeks. Three UCSF departments need to weigh in and make a further recommendation.  Despite long conversations with me, nothing was resolved today.  This debate is up in the air and not set in stone.  As for now, I am not jaundiced, popping Acyclovir, and happily shingles- free.

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!