"Fare Thee Well" 2012

Sunset over the creek.  Adios 2012!

Monday - December 31, 2012

Well, here's hoping that 2013 is less eventful (and harrowing) than 2012!  Perhaps in the future, this rollercoaster of a year will be a mere blip - a brief aberration - in a long continuum of family contentment and work fulfillment.  With that cheery vision in mind, I am looking forward to 2013 being a year when Joe and I effect our summer transfer to San Francisco, I get back to teaching, the children continue their studies without the heavy stress and distraction of a sick parent, and we all travel ~ visit ~ explore ~ discover ~ learn ~ share ~ cuddle ~ laugh ~ love with family and friends.  Now that would be a wonderful year!

Joy in Mudville!

Sunday - December 30, 2012



A cozy, comfortable week morphed into a relaxed, happy weekend marked by multiple games of Settlers of Catan (once with Sally playing during her Saturday afternoon visit!), many baked treats, good food both at home and around town, and just spending time with each other and Megan's boyfriend, Chris, who is visiting from California.

Our leisure time peaked with tonight's Washington football win over archrival Dallas :)  Yes, cliche but BIG fun (and perhaps some anxiousness) for this family of Washington football fans.  Chris was extremely game in indulging our Sunday night focus so we had an even larger viewing party / celebration!  As for the dogs, they snoozed away on the couch with occasional barkfests to join in interception and touchdown jubilation. All in all, it has been an extremely entertaining time!

One Year

Friday - December 28, 2012

Given that I have always seemed to note and mark time (counting down as well as counting back), today is certainly a red-letter day.  It's definitely not a celebration but more of a commemoration ...  ONE YEAR since I was "struck down" by a migraine on Grand Cayman.  The pain was truly a bit mythic in origin, strength, and ultimately in scope since it heralded a life-changing health odyssey and eviscerated any trust I once had in my body.  So I have been watching December 28 on the calendar and thinking ONE YEAR -  more in the Pearl Harbor Day sense than in an anniversary slant.  Perhaps we will mark today with a Dec. 28 Italian dinner similar to last year's fabulous meal notable for the delicious food as well as my introduction of the posture I would have for months, pressing hard upon the left side of my head looking for relief; the rubbing and the scratching would come later....  This year we are happily all together once more, joined by Megan's boyfriend, Chris.  The Caribbean venue will be recreated next week (see, I'm counting down again - just part of my make-up) withOUT last year's pain - that harbinger of cancer ....

A Christmas Wish Come True

Tuesday - December 25, 2012

A happy Christmas at home with Joe, Megan, and Jonathan!  Yes, we indulged our long traditions of fake-out wrappings (including Chinese dictionaries), slow unwrapping (perfected by Joe), jerseys-jewelry-and-J.Crew, board games, and cozy meals but this year my dearest Christmas treat was simply to be here.  Not in a Bone Marrow Transplant Unit in Richmond and not in a Bone Marrow Transplant Unit in Baltimore.  (NOTE:  Jonathan gifted the hounds with a bone marrow treat! Ha ha!) Not in an ICU or ER undergoing treatment for neutropenia.  Not facing imminent mortality due to partial response or no response to chemotherapy.  To be here with my husband and my children is my Christmas wish come true.  Laughing about our shared memories from Christmas past, enjoying our Christmas present, and - perhaps just a bit - considering Christmas future (next year in Yellowstone with Carolyn et al?). 

My Christmas wish has been building slowly over the last few months as I steadily creep back from the brink ... regaining health, regathering strength, reevaluating assumptions, reviving plans, and revisiting priorities and relationships.  Every Christmas, I am reminded of the tremendous gift of my fabulous friends and incredible family - children, spouse, father, sisters, nieces, nephews, in-laws, loved ones all....  This year, after being ambushed by cancer, my appreciation and thanks are profound.  My prayers have been answered; it's Christmas Day 2012 and I am here. 

All Set for the Holidays (with one Exception)

Sunday - December 23, 2012

Dusk, our cantankerous cat of 10 1/2 years, in 2009

After a low-key and happy visit with Maureen in Pennsylvania, we are back in Williamsburg enjoying our holiday preparations (and - to Megan's chagrin - a full slate of Sunday football).  The Christmas decorations and tree are UP, the menus are SET for the next few days, and we are all settled in for a relaxing holiday together.

On a very sad note, Dusk has gone missing and we now fear the worst.  He has loved prowling about the periphery of the house and into the nearby woods since we moved south and we think that he may have finally met a predator that he couldn't best.  Perhaps Dusk will appear on our doorstep as a Christmas surprise? 

4 out of 4 = Vacation (and a New Schedule) Begins!

Jonathan is back safe-and-sound from Blacksburg and our winter break is therefore officially underway!  Our first highlight is a long-anticipated visit to see Joe's mother tomorrow.  With today's report of a clear PET scan and lower liver enzymes, I am ready to rest and relax with children, spouse, hounds, and my "A number 1" best-ever mother-in-law!  I haven't see Maureen in a long 18 months - far too much time ....

This trip into a no-internet zone is an opportune moment to shift gears on my blogging schedule.  This blog has been wonderful in helping me keep straight the details of my treatment and side effects and in coordinating my communications. In fact, I have begun to fill in the back story to clear up the muddle in my head.  But it started as a daily update to loop in the children (who are now home) about changes in my medical condition (which is now - thankfully - static)!   I am going to step back from my daily entries and go to a less frequent routine, perhaps updating once a week unless (and let's hope NOT) my health takes another turn.  After all, as of now, I don't have much to report any more ... and isn't that fact an amazing and beautiful gift?  Oh, yes! 

A Clear Scan is the Greatest Salve

Tuesday - December 18, 2012

You gotta love an oncologist who delivers good news before closing the consultation room door!  My PET scan is completely clear: only half a page long because there was so little to report.  No abnormalities.  No uptakes.  All clear.  Next appointments on Feb. 13 ....  Yeehaw!

Dalton is packed today and Joe and I are more than three hours from departure - at least! 

++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

I had a long Rituxan infusion in the shared treatment room.  As a rare treat, the television was OFF and a modicum of peace was at hand.  Many familiar faces were around me - familiar RNs, familiar patients.  The woman next to me had a severe reaction to her chemo and was vomiting non-stop for over an hour; no medication relieved the nausea.  She remained upbeat and focused on working through the possible medication cocktails with the team.  Again, perspective, prayers, and good wishes.

Last Day in Limbo (for now)

Monday - December 17, 2012

I am so ready for tomorrow's meeting at VCU with the oncologist.  Let's just hear those PET scan results and move on.  On ... to 3 months (or 3 weeks? or 3 days?) of peace of mind or on ... to salvage therapy but moving on nonetheless.  This nervousness, this state of anxiety, is the gift of my current "complete response" and a condition I hope to repeat come March and then at regular three month intervals.  Continued anxiety is a small price to pay for continued health.  Sounds good to me!

3 out of 4

Sunday - December 16, 2012

It has been a grey wet day with much reflection and thought about Newtown and the quiet life in small town Connecticut, the cheery rhythms of first grade classrooms everywhere, and the terrible challenges faced by families dealing with profound mental health issues.

Focused reading time, a Washington football win, and page-protecting progress were all distractions.  But Megan's arrival for her 3 month visit is instantly transformative.  It has now become a totally excellent day  :)  Jonathan will be home in the next few days and then our group, our unit, our family will be complete.

Preparing - with Gratitude - for Family

Saturday - December 15, 2012

Megan arrives in 24 hours :)  Originally planned as a caretaking journey to see me through the Bone Marrow Transplant, she will now be researching and preparing for her PhD oral exams and keeping me company as I heal.  Jonathan will be home on Tuesday!  He is still toiling away in Blacksburg, studying for a slew of finals while fighting off a long-term cold and heavy fatigue.  I cannot wait until they are both here, resting and relaxing and letting us give them a momentary respite from some of their adult responsibilities and concerns.  A return to the nest.  I am mindfully grateful for the gift of my family.

Around Us
by Marvin Bell

Tonight's twilight walk prompts "a little sound of thanks"

We need some pines to assuage the darkness
when it blankets the mind,
we need a silvery stream that banks as smoothly
as a plane’s wing, and a worn bed of
needles to pad the rumble that fills the mind,
and a blur or two of a wild thing
that sees and is not seen. We need these things
between appointments, after work,
and, if we keep them, then someone someday,
lying down after a walk
and supper, with the fire hole wet down,
the whole night sky set at a particular
time, without numbers or hours, will cause
a little sound of thanks–a zipper or a snap–
to close round the moment and the thought
of whatever good we did.

Connecticut and Schools: 2 Happy Places

Friday - December 14, 2012

A '70s glimpse of a little corner of Connecticut

Perspective can slam you into the wall, taking your breath away with the icy realization that while circumstances might be daunting inside one's own microcosm of living, sorrow abounds around us.  It's often just hiding, sheltered from the buffeting of public exposure, safe from public explanation, held close within the confines of our private heart and thoughts.  As Megan recently wrote: "People don't deal with grief and deal with life separately; it's all integrated together. Sad people don't flee to an isolation chamber before standing behind you in line at the supermarket or talking to you on the phone."  In my first presentation to new parents at Rock Spring's Fall Membership Meeting, I always tried to reflect on the fact that we only ever know one "slice of the pie" in our fellow parents' lives, only the persona that has been chosen to be presented to the outside world.  We never know the private concerns that are shielded from our view and understanding.  Tragedy comes in myriad forms.  Chronic illness withers.  Constant pain wears and tears.  Death springs upon us unsuspecting.  Brain cyst.  Aortic aneurysm.  Cancer.  Suicide.  Premature birth.  Random mass shooting.  In sleepy Connecticut.  In the safe hallways of an elementary school.  Our hearts are full.  Our prayers are plentiful and strong.

The Benefits of a Fully Occupied Mind

Thursday - December 13, 2012

Math center group work from last year

In hindsight, I can better appreciate why working last spring was so vitally important to me.  Well, of course, my motivation was firmly grounded in the fact that I was finally fulfilling my long-sought desire and hope to return to the classroom and I did NOT want to give it up.  Also, how could anyone not be boosted by the absolute, pure joy I found in those splendid, spunky, and sweet first graders. I may have been one-eyed and absently rubbing my excruciatingly painful head but laughs, happiness, discovery, and group work were an everyday gift and I relished them.  In hindsight I am decidedly more aware that working through / with / in the midst of / mired in that wrenching pain was instrumental in maintaining my sanity and containing my terror.  If I had been at home - without the focus of mind necessitated by the demands of engaging and extending a cadre of active seven year olds - I surely would have driven myself into pure panic with all of that time to contemplate the horrible mystery of what was happening inside my head. 

Now in my "watchful waiting" mode, I am equally grateful to be able to get out of my own (now pain free!) head and WORK.  Today and tomorrow I am happily substituting back in third grade at Matoaka, leaving those gnawing omnipresent undercurrents of concern behind and becoming immersed in the needs of the classroom.  Working is a way to contribute while fully focusing my mind outwards, moving forward, ignoring those mortality statistics and temporarily forgetting that "relapse / cure coin flip" metaphor that is the bottom line for my life these days.  Better to be with third graders, enjoying some fractions and friendly letter writing  :)  As long as we don't have to discuss probability, I'll be juusssttt fine ....

Cancer is a Thief!

Wednesday - December 12, 2012

Sometimes I am simply enraged by the roster of people impacted by this fell, dread, bodily invasion.  Sometimes I simply have to stake a spot in the house, claim a moment, and cry.  In the seven months since stage 4 lymphoma was branded onto my essence / my identity, Megan's circle of youthful, just-starting-out-in-life friends has twice been visited by cancer - TWICE!  Two wonderfully vibrant, talented, energetic, and intellectually gifted recent college graduates have been robbed of their gift of health and peace of mind and been kidnapped into infusion rooms and oncology suites ... by cancer.  Thankfully both have come through the inferno with their spirits intact and their cancers beaten solidly / squarely / fully into remission.  "Life, Interrupted" is how the eloquent and fierce Suleika Jaouad (two weeks older than our Megan) describes the impact of cancer in young adults. Cancer has assaulted these youth, skulking away with their ability to take health for granted, thieving off with their sense of endless, easy "no worries" shrugs when a cough or an ache or a bruise or a lump may arise.  An outrageous siege on carefree days.... 

Today my tears are flowing for an older individual who has just embarked on her own cancer struggle, who has been mugged by this unheralded scourge.  I am comforted that she will be able to rely on the stalwart support and unequivocal love of my sister Carolyn.  I am baying at the moon in fury that the precious relationship she and Carolyn share - that rare genuine gift of deep found love and friendship - is being redirected from cheerfully mundane life outings into fraught cancer clinic visits.  I am infuriated and terribly terribly terribly sad.  My heart is full and my prayers are urgent.  I hold close this lovely woman who has opened her heart to my sister.  I remember and cry for Sylvia, my own surrogate mother, who parented me and loved me without reservation or the need for familial ties.  Remarkable Sylvia, who was also burgled by cancer, robbed of time, embezzled of experiences.  Cancer is a THIEF!  I pray that we can steal back our time, our years of experiences, our decades of opportunity to deepen and enhance our love....

PET Scan Day

Tuesday - December 11, 2012

PET scans require a LOT of time lost in your own mind - not the ideal situation for someone dealing with cancer even when recent news is good!  After being injected with radioactivity, you need to absorb / distribute the nuclear tracer evenly throughout your body and this means remaining still, in the dark, on your back, in a bed, covered by a warm cozy blanket  :)  At VCU (and perhaps elsewhere) books are obviously out and so are iPads and radios.  No stimulation at all ... just rest ... no movement ... in order to not create false "activity" readings.  After an hour, you move to the scanner where you are once again prone, still, eyes closed and eyeballs unmoving, flat on your back as the machine moves you forward and back taking 3D images that reveal "activity" in the form of cancers as well as scar tissue and heart ailments.

For whatever reason, today I was completely awake during this ideal naptime and ended up musing over the last seven months since I was diagnosed on May 11.  Seven months to the day.  I spent my hours of enforced inertia reviewing all 12 of the hospitalizations, trying to order my RNs and attendings - match them up to the chronology of those dozen hospital stays -  as well as family visitors, any side effects, highlights, lowlights....  It's been a whirlwind.  Now with this 3rd PET we are hoping for confirmation of the Aug. scan that showed "no evidence of disease" - complete response.  The scan and the wait are always a bit unnerving.  I'll find out the results next Tuesday.  Then I can breathe more easily.

Oops! Overdid It ....

Monday - December 10, 2012

Well, perhaps I am feeling so good that I forget that I am still building up strength, fighting back to health, restoring my energy.  Dr. Perkins was very clear on Friday that my blood counts are good "considering" ... but not normal.  "Considering" carries great weight and I may be too quick to shrug off that "considering."  Today those low blood counts caught up to me as I walked with the hounds to the river.  Boom - I hit the wall; no more energy AT ALL.  My pulse was fine but I had little strength to continue the long walk home.  That long simmering fear of public stumbling / falling / explicit weakness was smack in front of me.  I considered phoning Joe but knowing that he had biked to work as usual, I wasn't quite sure what we would do.  So I waited it out, sitting on a bench overlooking the wide expanse of the gorgeous York, trying to figure out when I could make the effort to walk home without completely giving out.  Our usual 40 minute walk took more than twice that time.  The dogs were thrilled with their license to sniff every leaf at will; I was in no rush.  Getting home, I crashed on the couch and slept away the fatigue.  Lesson learned?  A morning of baking and housework didn't seem that onerous but I confess that I was utterly wrong.  At least for today :)

Imperialism, Football, and Soup

Sunday - December 9, 2012

A full comforting Sunday of small satisfactions....  I feel that I am building energy every week, slowly getting back to my old self....  These last few nights I have been burrowing into the covers early with a book in hand and getting up in the morning feeling fully refreshed.  Today was defined by writing a Coursera paper on Imperialism, reveling in a Washington football win (wow!), and now a hearty soup dinner with Joe.  Perhaps not the most riveting diversions for everyone ... but for me?  I'm happy!

Immersed in a Bleak History

Saturday - December 8, 2012

I have regained my reading focus in the last few days.  Is a case of "chemo brain" waning?  Am I feeling more settled and therefore more focused?  Whatever the impetus, I have rediscovered an activity that had been lost to me these last many months.  "New Yorker"  articles kept me stimulated in this interval but I really was only focused enough to dip into books briefly, to cull out a nugget before I found my mind drifting.  Now I have torn through two novels in the last few days and have completely lost myself in "The Emperor of All Maladies" today.  No more bouncing between the index and the text, no more sifting out some paragraphs before finding diversion elsewhere; I found that I could finally read linearly, page following page, absorbing information as the author intended.  This amazing book's message is even more pointed when the text is read properly:  cancer treatment remains in a nascent stage.  Causation and efficacy of treatment options continue to be mysteries.  So many unknowns, so much professional disagreement, balanced against the tremendous commitment and passion among researchers and clinicians.  Oncology has come leaps and bounds over the course of my lifetime but clearly it is a field that is still at the threshold of understanding and progress. I am greatly relieved to be facing lymphoma now rather than prior to 1997 when Rituxan's game-changing attributes were approved for NHL but still - I have to wonder - what advances will provide the next breakthrough in this still-evolving, still-fresh "war" over the next decade? 

Good Numbers, Better Words!

Friday - December 7, 2012

Down a garden path?

And ... [drum roll please!] ... we now have a confirmed path to negotiate through the "watchful waiting" garden of the next six months!  So it was indeed a very good day at VCU --  I always enjoy a good plan.  Dr. Perkins had talked with Dr. Ambinder on the day of my visit to Hopkins 2 weeks ago.  Today, he and I reviewed and discussed the bottom line of this conversation:

• The Hyper CVAD and Rituxan protocol was an aggressive response to my aggressive stage 4 lymphoma.
• The reversal of Hyper CVAD cycles (starting with an even cycle) and two additional rounds of high-dose methotrexate targeted the lymphoma's presence in my central nervous system.
• I had responded quickly and completely to the chemotherapy.  In fact, my headaches had begun to dissipate while I was hospitalized during round #1 and I was in CR (Complete Response) by the end of my fourth round of treatment.
• Relapse is a 50% possibility.  However, the flip side of that coin is that there is a 50% chance that I could continue to be cancer-free --  that we "may have cured this."  (I do love his use of the word "cure" even if it is in a speculative sentence.)
• If I relapse, salvage therapy will probably be the RICE protocol followed by a mini-haplo BMT at Hopkins.
• Given my lymphoma's previous presence in my skeletal system, we will proceed with regular PET scans rather than Dr. Ambinder's suggested CT scans.  My next PET is scheduled for Tuesday and future MRIs and PETs will be synced up beginning in about March.
• I will continue with periodic Rituxan infusions as "insurance" against relapse and have my port flushed and my blood levels checked during these visits.
• Given my heightened liver enzymes (an indication of liver "inflammation") as well as blood counts that are viable but nonetheless indicate that my bone marrow is still straining to overcome the onslaught of six months of aggressive chemo, no more high-dose methotrexate is scheduled.  No more hospitalizations are on the horizon.
• Fevers and lumps need to be called in asap.  Common colds are probably in the future especially now that I'm back in classrooms.  Hot flashes are not unexpected for a 51 year old woman and actually should be increasing now that my body is recovering from chemo and its hormone-skewing effects; not to panic, not to panic....  Just hot flashes .... 
• I will stay off fluconozale for the foreseeable future.  My liver enzymes have now turned the corner and begun to decline.  They remain well above their already-elevated levels from Thanksgiving week but at least they are headed in the correct direction - DOWN!
• We did not discuss any timetable for removal of my port.

So, to summarize:  no more hospitalizations, specific monitoring scheduled, better liver numbers, and the use of the word "cure" by my naturally-cautious oncologist.  And THAT, ladies and gentlemen, is what defines a calming visit to Dalton  :)

Back in Third Grade

Thursday - December 6, 2012

I am generally someone who reflects and reevaluates again and again and again - perhaps a strong suit, perhaps a character flaw, it's just the way I work.  With my cancer diagnosis spurring even more reflection, I have found incredible calm and positivity in how content I am, how happy our choices have been, how fortunate our circumstances have proven to be.  Our time in Williamsburg was spurred in part by my desire to return to school and to get that long-desired teaching license, my entree to a return to a classroom.  And so I reflect on that stimulating and expansive William & Mary education complemented by my phenomenal student teaching experience at Matoaka ... and I feel incredibly lucky.  Lucky in the people, lucky in these two communities of professionals, lucky to have Joe supporting me as I took time out of the workforce and retrained.  This afternoon I was so very excited to get back into the happy environs of my student teaching classroom - and they were tackling European Exploration - one of my favorite topics!  Another opportunity for me to reflect and to feel happy and content.  I am very fortunate.

Dalton Postponed

Wednesday - December 5, 2012

An auto-call late last night first alerted me to a change in today's scheduled Dalton appointment.  Of course, given that it was an auto-call, I awoke early to prep for a trip to Richmond just.in.case.  In calling in and talking to a live scheduler, it turns out that I have indeed been pushed back two days in order to meet with my oncologist and to - finally - get the scoop on the conversation with Hopkins and next steps (I really would like that next CT on the calendar).  So an additional two days to turn the corner on my liver enzymes.  More healing and restorative water to reverse this troubling (to me) trend.

I'm back to feeling somewhat worn out - very sleepy.  I've managed to bake for the children but am pretty well knackered.  The Italian Greyhounds are dealing with the stress of a drizzly overcast day by zonking out in front of the fire and I feel that I am going to have to take a cue, listen to my body, and join them.  A very cozy sleepy day ....

Happy, Happy, Happy!

Tuesday - December 4, 2012

• Happy to have taken another step back to normal today!  No (anticipated) upcoming hospitalizations means that I can bust out of my bubble, risk germs, and get back to teaching.  At this point, substituting is the answer.  And I am so SO SO HAPPY to have ventured out of my quarantine and into school as a substitute today :)  Hurrah!
• Happy to get back to WORK! To a school!  To a sense of contribution!
• Happy to return to familiar halls, familiar faces, and a familiar routine at Matoaka!  So many people who have impacted me over the last few years!  So many folks who have helped me weather the tremendous health challenge of this last long year....  And today I had the lovely chance to see them for a bit....
• Happy to interact with elementary schoolers!  Connecting with children is truly a blessing.  I can honestly say that I have never taken this opportunity and pleasure for granted over so many years, roles, countries, and educational settings.  I love being with students.  I love exploring, discovering, and creating experience and knowledge with them.  I love it!  I love them!  How lucky to have a chance to participate in a classroom again!  How splendid to be with so many students from my student teaching year!  How AMAZING to see some of my first graders, six months older and wiser and just as cheery as can be! 
• Happy to have Joe at home, to share our days, to mull possibilities, to simply sit alongside and be myself....
• Happy to know our children are busy and fulfilled and will be home soon!
• Happy to have a respite from health concerns. 

Happy, happy, happy!  I'm just ... HAPPY!  Can you tell?

Sometimes Sleepiness is Just That

Monday - December 3, 2012

I've shaken off my weekend sleepiness and perhaps a bit of sleep-focused concern.
Me:  "Why am I sleepy?  What does it mean?  Is it a symptom?  Should I be worried and call it in?"
Joe:  "Maybe you're just tired."
Umm ... I guess that settled my undercurrent of nerves ... to a certain extent  :)  I expect that I will be nervy at anything that could hint of a re-emergence of lymphoma for the foreseeable future ....  Once you lose trust in your body, it is hard to build it back up.  The recent MRI provided some relief.  Now I would like a CT scan please.

Looking Forward ...

Sunday - December 2, 2012

... a little bit forward .... Joe booked our family New Year's travel.  We'll be off to St. Thomas for a week in early January without the hounds!  Happily, our stalwart dogsitter will be available and we are therefore able to go to a dog-free location  :)  Joe found a quiet house on Magens Bay with a fabulous view and its own private beach.  Sounds absolutely blissful! 

New Month, New Rhythm

Saturday - December 1, 2012

Keeping busy ....

Life feels settled these days.  Perhaps not yet normal  - after all I am not working and am still more focused on "now" than "later" - but settled.  Aside from the recent mysteries posed by my liver enzymes, my body seems to be responding and reacting in a recognizable pre-cancer, pre-chemo manner.  I can walk up stairs without risking a 150 bpm heart rate, trust my legs not to fatigue (or give out) when I walk the hounds, and know that migraines and double vision have been exorcised by the poisoned wonders of chemotherapy.  The third set of tree rings in my nails have almost grown out.  My eye dryness has receded to the extent that I am contemplating discarding my glasses and returning to contacts.  My eyebrows are practically back to normal and my eyelashes are in.  And most markedly, my fuzzy head gets hairier every day - keeping me warm, partially disguising the stamp of illness that is currently kicked to the curb, hinting at the dreaded menace that may still return.

Joe is working all day today and into tonight.  The hounds are keeping me company and are on full alert for the deer who are venturing even closer than normal to the house (read:  lots of barking and indignation).  They are currently collapsed in exhaustion in front of the fire.  Guarding us against deer is a full time responsibility.

Scanning Away

August 1981 - Shanghai, China

Friday - November 30, 2012

My liver and I have had a very productive day - imbibing much water and getting good rest, exercise, and nutrition.  I also continued to tackle my clean out campaign.  Why not just toss out everything into the recycling bin?  Well then I wouldn't unearth loose photographic gems! Such as this great picture from the early months of dating --->
I found it in a letter from a fellow student (not Tim Geithner) after we returned from that first trip to China, a summer of study at Beijing University.  The bunches of letters are terrific finds.  I am transported, enlightened, and enriched!

My New Favorite Organ

Thursday - November 29, 2012

Waiting at Dalton Clinic ... at Massey Cancer Center ... at VCU

Perhaps with all of my kudos and appreciation going to my amazing methotrexate-purging kidneys, my liver has been overlooked.  Well, not anymore.  My liver is getting my full and complete attention these days.  Today's blood work shows continued and accelerated growth in the levels of my AST and ALT liver enzymes.  Ugh.  In sharing the numbers on the telephone, my RN was very calm, totally procedural and "not to worry, time will bring the numbers down" but I pressed about changing something up to reverse this trend and she consulted once more with my oncologist.  He then pulled me off fluconazole, an anti-fungal med I have been taking since May, and will meet with me when I am at Dalton next Wednesday for another blood test.  In the meantime, I shall try to avoid googling "fluconazole liver toxicity" more than once (or maybe twice) a day and will imbibe even more water than usual. Livers love water and I LOVE my liver - my favorite organ.  Move over kidneys, you've had your time in the sun ....

Forget productivity and projects.  Time for a nap on the sunny front couch with the hounds.

Baking the Day Away

Wednesday - November 28, 2012

I am battling some physical muscle fatigue with a kitchen workout.  Jonathan's favorite cake constituted this week's mailing to Blacksburg and my first batch of ginger snaps in recent months was just the thing to awaken the senses on a cold winter's day!   Joe scented the air like one of the hounds when he came home for lunch - very aromatic and quite yummy  :)   It may just rival gingerbread in that department ....   Hmmm, maybe that's the subject for next week's baking.

I'm off to Dalton tomorrow for blood work to check my liver enzymes.  I will try to get some follow-up on the scheduling of a next round of tests AND to see if my two oncologists actually touched base.  Yesterday my VCU BMT coordinator emailed me to ask what had happened at Hopkins and I gave her the "watchful waiting" scoop but ... have not heard anything else.  Communication - it's a terrific thing!

Sunny Steps Forward on a Grey Day + End of Vacation?

Tuesday - November 27, 2012

After my morning admin meeting with HR, my substitute status should be activated late this afternoon.  Then I'll be one step closer to getting back to work, a welcome / cheery return to my normal pre-cancer routine.  Just to get up and out in the world!  To work with elementary schoolers!  Sounds great to me!  But, yes, I plan to modulate my efforts and not to overdo ....

No phone call yet from VCU to discuss the Hopkins meeting.  I also need to schedule my next CT scan.  I'll give it the end of the week and then I'll chase down that appointment.

+++++++++++++++++++++++++++++++++++

Hooray! Just finished the last step in registering as a sub in my former school district. "Welcome back from vacation" read the banner on SubFinder. Ha! Best (automated) comment in memory! Point of fact: If this was a vacation, I would like a refund please!

Getting the Ball Rolling

Monday - November 26, 2012

Today was devoted to keeping my many home projects moving forward and to making progress on the work front.  I have an appointment tomorrow that is not medical -- a wonderful, phenomenal, back-to-normal change of pace!  It is work-related!  Woohoo!  I'm meeting with HR to get all of my paperwork together to allow me to substitute.  I am thrilled about returning to a more normal rhythm, with more interactions, no focus on cancer, and young children.  What a treat!

I postponed my trip to Richmond for blood work until Thursday to allow more days to elapse -- more time to go by for those worrisome liver enzymes to begin their decline.  I know myself well enough to be aware that a continued high number might surface some serious fretting.  After all, I did just hear the words "organ failure" in a medical consultation.  Yes, they were said in the context of what must be avoided but sustained high liver enzyme levels will certainly spark some perseveration (perhaps just a bit) on those two words; I know myself.  I did not hear from VCU today about the phone consult with Hopkins.  Closing that conversational loop and scheduling my next CT scan are on tomorrow's agenda.

"So, When Can I Return to Work?"

Sunday - November 25, 2012

Joe and I have been batting around this question and other decisions today - at home in front of the fire, walking the dogs on "Tick Alley", and out at Bonefish for lunch.

Q #1:  "So, When Can I Return to Work?"
Now that I do not need to guard so intently against infections / illness that might delay planned hospitalizations, I should be clear to go back to work, yes?  Nothing else is holding me back.  I feel great and have ample energy.  I am very excited at the prospect of working and will call HR first thing tomorrow morning to determine how to return to the substitute list that I was on as a student teacher.  I'm thinking that I will start by limiting myself to the comfortable confines and community of Matoaka, my old school.  SO so so SO excited to throw off the restraints and to get OUT and contribute again in a classroom.

Q #2:  "So, What About San Francisco?"
After all, Joe's office has been amazing in holding this position for him and they need an answer asap.  I am nervous about the possibility of relapsing in an unknown city, without a support group, and so far from the promise of that mini-haplo BMT at Hopkins.  But in keeping with the gist of "Strictly Ballroom" I am trying to not live my life in fear.  We're continuing on with the assignment after a one year lymphoma delay.  It's a Summer 2013 move to San Francisco for a 2 year tour (unless I relapse before that time but let's hope NOT).

Q #3:  "So, Where Will That Family Vacation Be?"
Bahamas?  Sanibel?  Virgin Islands?  Puerto Rico?  They're all in the mix.  Last year's original plan to go to Maui with Carolyn and family is off the table.  Let's just find a warm place to be all together and relax.

Aren't these questions much nicer / less terrifying than the questions we were contemplating just two days ago?  Oh, yes.  It is a relief to have decision-making off the table even if relapse v continued health is essentially a mere coin flip.  What can you do?  You never even know when that coin is going to be tossed in the air.  Just reflect on the Serenity Prayer and hope for the best  :)

Letting the News Sink In

Saturday - November 24, 2012

First and foremost, I am keenly aware that today I am enjoying my husband and my hounds at home rather than being infused with chemo on VCU's oncology floor as envisioned just a week ago.  Furthermore, the sky is a brilliant blue, the fireplace is pumping out heat, and both children are happy and enjoying great company in Blacksburg and in Denver.  Life is good.  Home and health beat the hospital any day!

After 12 hours (!) of deep dreamless sleep, I awoke with the full realization that we have entered a new stage in our family's cancer era.  For the first time since mid June, a bone marrow transplant is officially off the (short-term) timetable.  The anxiety of "sitting tight" or opting for a high-risk transplant has been lifted as the decision has been taken out of our hands.  There is one U.S. hospital where I can receive a haplo BMT and that hospital's leading lymphoma specialist is not referring me for this procedure at the present time.  Dr. Ambinder echoed our own on-going debate:  if I am currently without any evidence of cancer, why chance a high-risk BMT?  The details of graft-versus-host-disease are daunting and those mortality numbers are difficult to absorb.  Odds exist that I may be fine "as is" and that a BMT might kill me.  I have mulled over this dice roll again and again and again.  Now the dice have been collected by a noted oncologist, packed away neatly, and stored in the Hopkins medical cabinet.  It's no longer a question of making the right decision.  There is no decision to make ... and I am feeling pretty pretty good about that  :)

What now?  Well, Joe hopped online as soon as we got home yesterday looking for a family New Year's getaway (the Bahamas seem to be the leading option).  Megan continues to plan her winter term of research and family time here on the East Coast.  Our hoped-for trip to see Joe's mom at Christmas time seems to be on firm ground.  And ... I am contemplating when I can get back to work.  Mostly, I am resting, relaxing, and letting the no-BMT news sink in.  "Watchful waiting" is not necessarily my strong suit but as an over-achiever I will do my best to watch and wait with calm and grace.

First Consult at Johns Hopkins: Let's "Change Things Up"

Friday - November 23, 2012

Joe and I are heading up the interstates before dawn on Friday for our 11 a.m. meeting with our new Hopkins oncologist.  Here's my Thanksgiving appreciation for all of the professionalism, finesse, knowledge, and instincts of my medical team and my sincere wish for continued good fortune and a clear, smooth path ahead into 2013 (or at least next month!) ....

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Joe's summation of the meeting's take-away message

Ten hours round trip with no traffic, brilliant skies, and some very interesting conversation with the Johns Hopkins lymphoma specialist.  After interviewing me to fill in some blanks in my treatment history, confirming that I was visiting as a precursor to a BMT, and then giving me a physical exam (still no palpable lymph nodes - nope, not even in the groin no matter how hard they press), the oncologist started our meeting in the consultation room saying, "I'm going to change things up."   Right then, I knew he was going to advise against a bone marrow transplant and shifted - quite literally - to the edge of my seat.

Dr. Ambinder confirmed that I had responded extremely well to my (very appropriate) Hyper CVAD protocol.  Given clean PET and MRI scans that showed no tumors, he feels that a BMT with its inherent infection risks and graft-versus-host-disease dangers might not provide me with the best outcome.  He explained that up until very recent years, JHU might have referred me for transplant at this point in my treatment but that their current thinking is to "watch and wait," to avoid the dangers of BMT when patients have responded this well to chemo, and to be ready to go forward with transplant when / if the lymphoma relapses.  In my case, when pressed (as we of course DID press) to lay out odds, he hazarded a 50% chance of relapse.  In case of relapse, the R-ICE protocol is available.  He also said that there was the "possibility, if not the likelihood"  that I might be "cured" (love that word!) and that to go through a risky and debilitating BMT without need would exact a heavy toll on me physically.  Dr. Ambinder then cited my liver enzyme numbers as evidence that "there are limits to what our organs can take" and that a BMT hinges on enormous doses of chemotherapy.   AND he reminded us that a transplant is no guarantee against relapse.  Dr. Ambinder advised that this course of "watchful waiting" would include CTs and MRIs every three months and regular bloodwork.  He did not see the benefits of continuing the high-dose methotrexate since I am no longer "bridging" my time until transplant and since my liver is in distress ("organ failure" = not cheery words).  He'll consult with Dr. Perkins on Monday.


So we are drawing breath and processing information.  Joe and I have been wrestling with the question of whether to "sit tight" or to pursue a transplant for months.  What are the odds?  It's a hunch either way; there are no guarantees and we will never know if we made the correct decision at this fork in the road if I have a poor outcome.  Having another consult is invaluable and - let's face it - Dr. Ambinder is the gatekeeper to the Hopkins BMT and his recommendation is key.  Our decision-making process just got a little easier  :) 

I am heartened by some numbers, namely that a Hopkins' mini-haplo BMT carries only a 7% mortality rate.  If it comes down to it, those numbers are much less terrifying than the standard allo rates (20-25%).  I am feeling somewhat "settled" that the chemo might be at an end - for now.   I'm also feeling "positive" to the extent that the mysteries of lymphoma allow.  "Positive" is fine for now.  I'll also profess to feeling "satisfied" with and "grateful" for my treatments and my medical team.  And my family and friends  ....

Enormously Thankful

Thursday - November 22, 2012

A happy Thanksgiving with my boys!  Joe, Jonathan, and I enjoyed a holiday turkey lunch at the Trellis and then ambled through Colonial Williamsburg, soaking in the sun and the fresh autumn air.  It was bustling on DoG Street today!  "Make way, sir!" the colonial re-enactor called to Jonathan as her historic technology (horse and carriage) almost intersected with him - thoroughly absorbed, head down in his modern technology (droid).  The balance of the day will be quiet, filled with chores (laundry, mending, cooking), football, a pasta dinner, and a touchbase with Megan and the Alzamoras celebrating together in Colorado. 

Jonathan returns to Blackburg tomorrow as Joe and I hit the road for our daytrip to Johns Hopkins and my initial consultation for the haplo bone marrow transplant.  Today, I am again pampering my liver by supplementing my already epic levels of water consumption and channeling positive thoughts towards my troublesome enzyme levels.  I am interested in hearing if these levels will torpedo or just postpone future methotrexate infusions.

On this Thanksgiving with Jonathan's latest visit drawing to a close, I am enormously grateful for the company of my husband and children and for the support of all of my friends and family.  It has indeed proven to be true that "the greatest healing therapy is friendship and love."

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Take Off!  An Ammirati family tradition!  We used our old school / dated / original board (USSR, South Yemen, Bonn and Berlin both as capitals), I rolled doubles like the dice were loaded, Jonathan sent planes back to Hawaii with regularity, and Joe ... won! 

Oh, Those Interfering Liver Enzymes...

Wednesday - November 21, 2012

All good things come to those who ...

Well, we had planned for me to be in the hospital beginning Saturday for my 3rd round of high-dose methotrexate BUT today's blood test showed that my AST and ALT counts have increased 50% in the last five days.  This increase is on top of already elevated levels so my next hospitalization is NOT being scheduled until my numbers are down, indicating that my liver has recovered from the last methotrexate infusion and is ready for the next onslaught.  Jonathan and I did not wait at Dalton for the "thumbs up / thumbs down" decision and got the word from one of my RNs by phone when we returned to the house.  I will go back on Monday for another blood test but will not be admitted on that day and may not go into the hospital until the end of the week at the earliest.  So what do you do to reduce rather startingly high AST and ALT numbers?  You wait for the liver to heal itself.  With time, the liver should recover and the enzymes should decline.  I just need to wait ... it ... out.  THAT, I can do; I've been practicing  :) 

Stronger Every Day

Tuesday - November 20, 2012

Gray but mild, today has been a relaxed opportunity to tie up loose ends, forge ahead with projects, and just hang with Jonathan.  Joe met us for lunch at Nawab, our favorite local Indian restaurant.  This visit reinforced my physical gains in the last three months.  Eating at Nawab with Megan and Joe at the end of July, I was unsure enough of my footing that the buffet posed a daunting challenge and I recall leaning on Megan as we traversed the parking lot.  Today, I am strong enough to rely on my physical capabilities without hesitation.  I can trust my strength and stamina ... and that is indeed a wonderful thing!

Limbo is NO Fun (the Status not the Dance)

Monday - November 19, 2012

Battling a sense of limbo, I look forward to this week's medical appointments.  Wednesday's blood test at Dalton will determine if I go in for hospitalization #13 on Saturday;  Friday's initial meeting with my new Hopkins oncologist will determine a LOT.  Is a haplo BMT guaranteed? a done deal? Am I truly in and admitted to the program?  (I believe I am but it will be a relief to hear the news from a physician in a face-to-face meeting rather than from an administrator over the phone.)  So, what additional tests are necessary for the kids?  Can these tests be done outside of Baltimore or must we wait until they are both out of school and available in mid-December?  Totally do-able, of course, but we want to get moving in whatever direction we are going! Then what?  When do my preliminary tests begin?  When might the actual plan of treatment begin?  When, when , when?

Oh, I love to prep and plan and anticipate!

I am a person who thrives on structure and schedule.  I love to plan and anticipate - often years in advance when it comes to Joe's proposed work assignments or our family travel.  Drop-in visits?  Unexpected changes in routine?  Ummm ... not exactly part of my innate nature but often a happy surprise - Alison's Thanksgiving visit a few years ago comes to mind!  SO, I am trying to focus on these cheery examples of spontaneity and embrace the stretching of my comfort zone that this "lack of next steps" necessitates. 

In the interim -- as I count down first to Wednesday ... then to Friday -- I continue to be happily engaged with my never-ending digitizing project and with being with Jonathan!  Contentment is ... baking for Jonathan while listening to "Morning Edition."

November's Tandem Birthdays

Sunday- November 18, 2012

Picasa, Picasa  ... where would my scanning be without you?

My family has two pairs of tandem birthdays:  Megan and Carolyn share a July birthday and my sister Rachel shares her November 18 birthday with my Aunt Virginia.  Being somewhat of a numbers geek, I have always loved the idea of the shared celebration AND I am grateful for the opportunity to reminisce about the nurturing, down-to-earth, and humorous presence Virginia had in the Carter siblings' lives.

This year, Rachel is marking a milestone birthday!  I was so excited this week to dovetail my photo scanning project with her birthday and to finally start uploading our family archives up onto the web for general access and use.  Finally, a small part of the print part of this digitizing project seems to be reaching an end point; I have almost finished the "loose" photos - as opposed to the photos in albums which are derived from negatives.  So, next up are my film negatives and my new negative-specific scanner :)  Soon!

Today has been a lovely, quiet yet productive day.  Gina and I had a terrific catch-up over brunch and then I came home to my computer, Picasa, Winkflash ... and football!  Having Jonathan home is an amazing treat,  enjoying RedZone with him is very good fun, and a Redskins win is icing on the cake!

My energy remains high, my strength is growing, and other than dry skin and eyes I believe I can say I remain comfortably symptom-free  :)   Of course, the hard evidence of a clear MRI makes everything even better!

A Saturday of Common Satisfactions

Saturday - November 17, 2012

Today is a workday for Joe but some harbingers of an autumn weekend are still in evidence:  Scott Simon on Morning Edition, an absence of school buses driving past the house, and Hokie football on the television as I work at chores and projects.  I slept long and deep last night after a few days of disquiet and frayed nerves.  Today's baking, cooking, scanning, sorting, recycling, and page protecting are all a little happier with Jonathan in the house  :) 

"Friday News Roundup"

... but without Diane Rehm (... an aside for my fellow NPR afficionados out there)....

Dalton Clinic was - literally - empty of patients when Jonathan and I arrived at 1:30 on a Friday afternoon!  As a result, we moved right through the Dalton dance (registration, port access, blood draw, vitals, pre-medication) and got into the treatment room very quickly.  Even the consultation with my oncologist was streamlined when he met with me in the treatment room during my Rituxan infusion.  I was very very relieved about the news of a clear MRI.  In fact, the MRI showed marked improvement in the small "not-to-be-alarmed-about" area of "healing" that has been monitored in my left cavernous sinus since July.  I have no clue why was I feeling so skittish about the MRI this time but I was certainly worked up.  Having Jonathan's company was a huge support.  In terms of my blood work, the two liver enzymes (AST and ALT) that were elevated during my last hospitalization remain high and may postpone next week's hospitalization.  "The mechanism of liver injury with methotrexate is believed to be direct toxicity;"  my kidneys are not the only organ taxed by this high-dose methotrexate regimen.  I will return to Dalton on Wednesday for more blood work to determine if my liver enzymes have declined and if my liver is recovered enough for another chemo onslaught just a few days later.

On the Hopkins front, next Friday's appointment is confirmed.  Because this news was left on the answering machine, we're unclear about whether the insurance issue was completely cleared up but I'm assuming the answer is "yes."  Why go ahead with an initial consultation if we couldn't continue on with the haplo?  Phew.  Another moment of uncertainty and frenzy - resolved.

A Frenetic Morning + A Relieved Afternoon

Friday - November 16, 2012

Or is it a "frantic" morning?  Hmmm....  I'm not sure ....  I had a tossing-turning night (from nerves?) which somewhat depleted my "steeliness" reserves and then I got a phone call from Marla, my contact point at Johns Hopkins.  Uh oh.  Why is Marla on the phone?  She shared that the oncologist's office may in fact be closed the day after Thanksgiving -- oooookay, I can roll with that (but why is this info still up in the air one week prior to the date?).  Then she asked for copies of my insurance card because the oncologist, in reviewing my files and seeing my prior authorization for a BMT in Richmond, wanted to confirm that treatment at Johns Hopkins was indeed authorized.  Yes, on Wednesday I confirmed with an actual human being at Blue Cross Blue Shield that my BMT authorization extended to Hopkins even though it was originally issued for VCU.  Yes, I confirmed that this oncologist was in-network.  Yes, it is Open Season and we can upgrade our BC BS plan as necessary.  Yes, everything seems fine on the insurance admin front ... but I am on edge.  Add to that a computer crash as I tried to scan my card, sweating as I ran around (is it really just sweat?), and a FAX machine robo-calling the house ... and I have had a weird, discomfiting morning.

BUT ...  Jonathan is currently on 64 on his way to Williamsburg.  The imminent arrival of your child has a calming, soothing, healing, positive effect....  Off to Dalton just after noon to meet with my oncologist.

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Phew .....  my MRI is clear.  I can draw a deep restorative breath.  I still don't know why I have been so nervous....  Jonathan is here with me as I get my Rituxan infusion.  We'll be home for dinner.

The Garden Path Leads to Baltimore

Thursday - November 15, 2012

 Massachusetts General's algorithm to select donors for patients w/o HLA-matched sibling

So yesterday heralded a shift in attention and treatment from Richmond to Baltimore.  I am still somewhat caught between two medical centers and two oncologists.  The handoff has not yet been made effective and I will be meeting with Dr. Perkins tomorrow at VCU to review last week's MRI and to have a Rituxan infusion in preparation for a Nov. 24 VCU hospitalization for high-dose methotrexate #3.  In between these next two VCU events, I meet with Dr. Ambinder at Hopkins to review my cancer, treatment to date, and a pending haplo transplant. At this Nov. 23 meeting, we should get a clearer idea about schedule and specific next steps.  Hopkins is in the forefront of haploidentical treatment in the U.S.  This transplant is a type of allogeneic BMT that uses a half-match rather than a full-match donor.  Either Jonathan or Megan will be my half-match.  They both are 4 of 6 allele matches and further analysis will determine who has the best profile for transplant in terms of latent viruses that might prove dangerous in a foreign system (mine).  Yes, the survival rates of an allo transplant - let alone a haplo transplant - set my teeth on edge but medical consensus is that haplo is my best option for long-term outcome.  Megan explains the procedure in more detail on her blog. Hallelujah for Hopkins letting me through the door and for my family providing me the logistical and emotional support to make it happen!

Tomorrow's VCU appointment has me in a less-than-sanguine state.  I still feel full of energy and asymptomatic but any time that I come face to face with an MRI report (or biopsy or scan report), I never take anything for granted and gird myself for less than perfect news. Joe cannot come with me tomorrow but Jonathan is coming home from VA Tech for Thanksgiving break sometime in the next few days and we may in fact meet up at Dalton tomorrow for my meeting with the oncologist.  I always appreciate a supportive presence during these meetings.  In April, those initial phone calls pointing towards lymphoma were delivered to me in my classroom after school.  I remember returning the call to VCU's head of internal medicine as I sat at my guided reading table with the classroom lights off because of my migraine and one eye patched to allow me to see without double vision.  When he told me that the CT scans showed inflamed lymph nodes, indicated lymphoma, and that he had scheduled a surgical biopsy, I discovered that I was not unhappy to be alone to process the information... before I phoned Joe ... before we told the children....  "You seem very calm," I remember Dr. Edmund said at one point.  I replied that I thought I would only be really upset if I could have acted sooner; he kindly replied that I had certainly been aggressive in seeking a diagnosis and treatment for months.  Anyway, this long tangent is meant to surface my nerves when getting any subsequent results.  Any time I sweat or have a twinge of headache, I experience some residual concern.  Am I just hot ... or has the lymphoma returned?  Is the MRI pounding around my head for an hour causing this headache ... or has the lymphoma returned?   Fingers crossed for continued good news tomorrow afternoon.  My stomach is a wee bit queasy with nerves....

I'll take strength as I remember getting the definitive DLBC diagnosis (via telephone) with Carolyn by my side, hearing PET scans and MRI results with Joe firmly next to me, having treatment at Dalton and up on my favorite hospital floor with Megan, Jonathan, Joe, Carolyn, Sally, and Rachel all right there to back me up, and having so much positive energy and prayer from so many friends around the world.  Thank you!

Of Page Protectors & a Scanner (& Hopkins visit #1)

Wednesday - November 14, 2012

While awaiting news from Johns Hopkins, I remain immersed in my project of digitizing and scanning the family archives.  Intellectually, I understand that this task is indeed finite but WOW does it seem infinite.  I am working forward ... crawling ... plodding ... toward that glorious watershed date of August 2003 when we went digital.  Prior to that date, I am methodically going through the photo albums, the correspondence, and the schoolwork -- selecting, weeding, scanning....  A cheerful refresher of all of our tremendous adventures as we moved from Arlington to Beijing, to Falls Church, to Taipei, to Hong Kong, back to Arlington, to Manhattan, and then back to Arlington!  When I find a loose photo, I am assisted by these changing locales as well as the state of the children's front teeth!  I am simultaneously scanning any Carter family photos that are somehow in my possession with the goal of uploading them to a shared family account.  This exercise is more than a bit addictive however the wide eyes and fixed gazes of the hounds have dislodged me from the scanner and gotten me out for some fabulous autumn walks.  Another crisp fall day to relish the vivid colors and soak up the sun.  Life is good!

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GOOD NEWS! Johns Hopkins has said yes. It feels a bit like I have been invited to the Haplo Bone Marrow Transplant prom. Now I am diving into the insurance abyss to make sure that everything is covered (and that we don't bankrupt ourselves)....

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And....... after much internet scrambling and telephone work by both Carolyn and myself, I have insurance clearance for a BMT at Hopkins AND have found an in-network lymphoma specialist at Hopkins ... with the result that ... my first consultation with this oncologist is next Friday (the morning after Thanksgiving).  This ball is rolling!

My Ears Are Burning

Tuesday - November 13, 2012

Lucky Tuesday the Thirteenth, perhaps?  Well, my medical files are being reviewed today by a panel of physicians at Johns Hopkins and I am feeling lucky.  At this point, all I can do is project positive energy, remain hopeful, and wait.  To keep well occupied, I am almost frenetic with multiple strings of activity - baking, cooking, scanning, making cards for the kids, and trying to get my rain-averse short-haired hounds out of the house on a blustery day.  My VCU oncologist has just confirmed that I can postpone my next hospitalization from the 19th to the 24th thus allowing me some downtime and relaxation at home with Jonathan and Joe next week.  With Megan enjoying family time with the Alzamoras, now, THAT'S a Happy Thanksgiving!

Firming Things Up

Monday - November 12, 2012

Dotting "i"s and crossing "t"s seemed to be the order of today.  I did what I could to firm up anything medical that is in my control, confirming that all necessary documents had been received at Hopkins and nailing down Friday's appointment at VCU's Dalton Clinic.  On Friday, I am meeting mid-afternoon with my oncologist to review the results of last Thursday's MRI and then getting another infusion of Rituxan in preparation for my next hospitalization for a third round of high-dose methotrexate.  The date of this next hospitalization is still up in the air.  I am scheduled to enter the hospital one week from today and to be discharged on Thanksgiving (morning? afternoon?) BUT Jonathan will be home during that time and I am loathe to miss any time with him.  Of course, he could hang out at the hospital as he and Megan have done in the past but - let's be completely honest here - it is MUCH better family time at home.  The appeal of the oncology floor is limited - especially after a dozen hospitalizations!  I have asked (very politely) if I can be admitted on Saturday Nov. 24.  The attending physician from my last hospitalization indicated that this would not be a problem at all however we'll see what the official word is from my oncologist.  I may have the answer tomorrow!

I am completely captivated by the York.  The hounds and I enjoyed a long, sunny walk along the river this morning.  It's restorative.

To the Eagles' Nest

Sunday - November 11, 2012

On another warm, bright, glorious day in Williamsburg, Joe and I took full advantage with a long morning walk with the hounds.  Instead of enjoying our route down to the York, we set off through the woods.  This route winds alongside the mill pond and out towards an eagles' nest clearly visible from the path.  No eagles were in sight today nor were the flocks of Canada geese and cormorants we had encountered last Saturday.  Sadie was on high alert for any waterfowl that might cross her path but it was a quiet, still day all around.  I think this walk may mark my longest outing since ... December?  Headaches?  I definitely feel that my strength is building steadily and that my body, blood, and bone marrow are showing tangible recovery from the chemotherapy.  I am certainly in a better physical condition to endure a bone marrow transplant now than I would have been for the original mid-October timetable.  And I hope this strength contributes to an easier procedure and sunnier prognosis.

A Sisterly Staycation

Saturday - November 10, 2012

Carolyn's visit has whizzed past and I am so very very sad to be driving her to the airport in the next few hours.  Unlike her long visit this summer, I was much more functional and energetic this past week;  we have not been bound to the house with me crashed on the couch, healing up, letting the chemo do its work.  So, yes, Carolyn was exactly right - we could have fun this visit rather than just be mired in the repercussions of cancer.  Films, walks, books, meals out, the election (!), the election post mortem (!), and discovering long-lost, dead-on family correspondence kept us highly amused and happy.  We also managed to knock successfully on Johns Hopkins' door thus developing some (vague) outline of (possible)  next steps.  Our previous sisterly getaways have included Taos and Santa Fe, Chicago, the Florida Keys, Sanibel, and L.A..   This lovely, nurturing week was our first sisterly staycation.  Where will we go next?  Baltimore?  :)