[CHIME] "It's 4 a.m. Do you know where this writer is?"

Saturday - June 30, 2012

Why, here I am! Downstairs!  Wide awake  Alert  Roused from refreshing slumber Semi-vertical after 3.5 hours sleep, enthroned on my customary left side of the couch, with 3 different screens to occupy my scattered mind (because really folks I have still not adjusted to this new abbreviated sleep schedule).  Laptop with internet and NPR audio, iPad with NYT crosswords app, HDTV broadcasting SportsCenter (because Jonathan is snoring away on the remote).... I am ALL tricked out.  Wouldn't it be glorious if my mind would settle and focus enough for me to read off a page rather than a screen?  Somehow, it's not happening.  Another medical mystery!

HOME!

I am so tremendously relaxed to watch the sky lighten at home rather than in Richmond!  Taking stock of my chemo-absorbing body after cycle #3, I remain free of mouth sores, have some physical prowess in terms of standing and moving across rooms (impressive, I know!), and continue to have escaped any nausea and vomiting.  Today I plan to rest, rest, rest and to try to sneak a nap (or two) if the opportunity arises.  Our full house will empty out for a while as the Alzamoras and Conklins all head southeast to Hampton Roads to visit battleships, go on a beach outing, or visit my mother in the ICU.  Jonathan will also depart today for a month of work as an Orientation Leader at Virginia Tech.  That will just leave Joe, myself, and the hounds here at the house!  We will be going from boom to bust.  I definitely sense a long couch slumber on the horizon!

I also hope to be able to walk the dogs around our neighborhood.  Last night for the first time in 3 weeks,  I was able to walk a full circuit around the circle that fronts our house.  Joseph, Jonathan, and I headed out with the hounds in advance of an approaching line of thunderstorms and I made it (slowly) all the way.  This final walk of the evening has always been my favorite.  I love the anonymity afforded by the darkness and the changing skyscape of stars and moon.  Having greatly missed the peace and centering of these walks, I am so happy that my strength has recovered enough for me to get outside, feel the air, and absorb the beauty of the sky.  Another walk tonight?  That's the goal.

"Seek home for rest, for home is best"

Friday - June 29, 2012


At 1:20, Joe and I picked up my sundry shopping bags (why don't I bring luggage?) and ambled down the hall of the Oncology Unit on our way HOME!  Truth be told, I never leave my room at VCU.   I just hole up.  I never even peek out the door.  Ever.  Yes, the staff encourages me to walk the halls for exercise but somehow I completely resist (and I am really NOT someone who resists anything), opting instead to stand up, stretch, and move for much of my computer work and other "activity" within the confines of my room.  As one of the healthier people on the hall (for now), might I be avoiding an encounter with deeper sickness?  with my possible future?  Anyway, as we left my room, I was overwhelmed with gratitude to have weathered my third chemo cycle and with relief to be leaving the friendly but stultifying hospital environs.  Fingers crossed that I will not be back in a hospital room until July 17!

Joe with the Critical Care Hospital behind him

 Although the spiffy Jetta showed a 103 degree outside temperature, it was still a tremendous rush to get into the fresh (heavy, humid) air and feel the breeze!  When we hit the gate at camp, I hopped into the driver's seat and opened up the throttle along the curving roads.  Fun, fun, fun!!  Gotta love the tight handling and responsiveness of VW engineering!  Love this car!

It was a lovely afternoon.  How tremendous to be home one day earlier than expected!  I was pretty played out and took advantage of my favorite spot on the couch to cuddle the dogs, watch Wimbledon, and respond to some emails.  When responding to a  Linkedin invitation, I inadvertently hit some innocuous button and sent out more than 2800 invitations to link up!  Dear internet circle:  I sincerely apologize for all that spam.

And how best to commemorate Jonathan's last night at home before heading back to Blacksburg?  Anna's Pizza, his favorite!

"Keep Calm and Smile On"

Friday - June 29, 2012

Data update!  I am once AGAIN a champion methotrexate-flusher....  Just sayin'....  Don't mean to brag (too much) ... but my kidneys are truly amazing.  My methotrexate level was already down from 14.0 on Wednesday evening to 0.07 last night.  Only 2/100ths to go until I am officially "ready to be discharged."  My pH levels have also stabilized and anti-mouth sore operation 2.0 is officially underway;  I am rinsing, gargling, brushing, and flossing with focus, efficiency, and passion!  AND even with weeks of poor sleep, I seem to be regaining my physical strength and my cognitive / emotional mojo!  Hurrah!

Megan may not fully appreciate my standing desk

****  "Silly me Surprise" 7:30 a.m. update:  I can't count!  I can't read!  I don't know the date!  I am going home TODAY - not tomorrow!  I AM SO HAPPY!  Yeah, kidneys!  Get my methotrexate levels down those last few ticks!  *****

This morning after five hours of only slightly-interrupted sleep, I am up once again in the dark.  Changing into street clothes (still a novelty here, I am repeatedly told by surprised hospital staff), I set up shop at my oh-so-nifty hospital standing desk, connect to an NPR LiveStream, check the NYT and Post headlines, dip into Megan's blogs, and then enjoy the sunrise.  Sunset?  Yup, very familiar time of day.  Sunrise?  .... Not so much....  All my enforced downtime has definitely prompted reflection down memory lanes and as I watch clouds come into clearer definition in the eastern sky, I scroll through my short inventory of sunrise memories.  Yes, we had daily glorious Caribbean sunrises from our large terrace on Grand Cayman but Cayman memories are slightly tainted by the crushing onset of my migraine and my months of pain and poor function.  Rather, my sunrise-seeking mind always seems to settle happily on our house rental in Pahoa on the Big Island in 2005.  Joe would already be awake in the coolness of the pre-dawn, sitting up on the observation deck overlooking the crashing Pacific.  Climbing up the cold spiral iron staircase, I could smell his hot coffee and see his outline in the darkness.  Together we would first watch the red sun creep up above the rough seas and then turn around and appreciate the red sunshine bathing the volcanoes.  Amazing Pahoa sunrises!

SUNRISE with garage, viaduct, and chemo pump reflection

But life is all about perspective, yes?  Earlier this week, I was characteristically effusive about my room's gorgeous window of sunshine when a hospital staffer apologized for my "car garage view."  Huh?  Say what?  I couldn't quite digest this information.  All I see is the huge expanse of blue sky, the elegant herons transiting their air route to / from the nearby James River, the occasional aircraft visible on its approach into Richmond, and the ever-changing stimulation and wonder of the cloudscape; the garage is simply an insignificant baseline at the extreme lower level of my window frame.  I just don't SEE the garage decks.....  Gotta focus on the positives - no matter the context.

A Cayman sunrise!

Yesterday, an extraordinary new mantra entered my world:  "keep calm and smile on."  Isn't this the crux of good karma and making connections with the world and your community?  This phrase prompts deep appreciation for my personal great luck in life, gives shape to my thoughts as I consider the grand fortune of my family's health and happiness, and informs my feelings and thoughts as I hold families who have been visited by tragedy close in my prayers and meditations.

****  Just as I finished writing, StoryCorps broadcast a beautiful piece about perspective and finding joy.

Hounds in the Hospital? OH, YEAH!

Thursday - June 28, 2012

Good morning!

Well, today is a MUCH-anticipated day where Ammirati worlds (home v hospital) collide, small canines click noisily across linoleum, and joy is shared on the Oncology floor.  Baxter and Sadie will visit me in my hospital room for cuddles, some kisses, and some sustained, healing Italian Greyhound snuggles on my oh-so-roomy Oncology floor couch.  ** After the hounds visit in mid-afternoon, I will add photos and comments at the end of this post.**  Carolyn and Joe have been trouble-shooting and planning this scenario for weeks.  The dogs could NOT have visited me on the Bone Marrow Transplant Unit; another reason to to be grateful to be in the Critical Care Building :)  Can't wait for to see the surprised Sadie and Baxter when they discover me in this unfamiliar setting! 

Yes, it's another early morning wake-up (due to repeated "air-in-line" alarms from my constant kidney-protecting sodium bicarbonate infusion) yet I am dragging less today as I watch colors flood the sky outside my window.  Perhaps I enjoyed just another brief 4.5 hours sleep but I am (initially) more refreshed.  In addition, my fingers are less tingly and my large muscle groups seem to be fulfilling their lifelong promise to support me upright upon demand.  Perhaps the effects of the "odd cycle" Hyper CVAD protocol are being subsumed by the chemistry of this "even round."  No mouth sores so far.  No nausea.  No vomiting.  No complaints on my part!  I'll take it!

My heart rate is subsiding. It was just measured below 90 compared to 125 when I was first admitted on Tuesday.  At that point, I looked at the sweeping and impressive flight of stairs from the VCU Gateway building up to a connecting plaza that I needed to transit to get to Oncology and .... decided to walk up the steps.  I took my time, paused as necessary, and still had issues regulating my pulse.  Nothing dire but I realized my first set of in-patient vitals would be a bit ... elevated  :)  Anyway, yesterday the Oncology Fellow detected an ectopic heartbeat or premature ventricular contraction (PVC) during my morning assessment.  Joseph and I had both detected this in my pulse a few weeks ago (and reported it) so it was no big surprise.  Just something to monitor as it appears to be one way my body is reacting to the chemo.  I am feeling no symptoms.  Ironically, this time last week, Joe was being monitored for his own physician-detected PVCs but he had felt symptoms that had caused him to see our doctor.

The key element of these "even rounds" is the flushing of my 24 hour methotrexate infusion from my blood stream.  When I am admitted on day #1 and as soon as pharmacy can trot the infusion up to the room, the nursing staff accesses my port, I am hooked up to a pump, and methotrexate is poured into my veins over the course of a full day.  THEN my blood level is monitored to determine the degree to which the methotrexate is flushed from my body through my kidneys.  I can only be discharged when this methotrexate level is "undetectable" - at a level below 0.05.  Upon completion of the 24-hour methotrexate infusion, my initial read was .... 14.0 .... so the race is on.  Here's hoping I can purge the methotrexate and get home Saturday afternoon as soon as another chemo infusion (my last cytarabine dose) is finished around noon

Another medical issue that is certainly manageable with medication is rearing its head this cycle.  My urine pH has been borderline acidic since I arrived on Tuesday indicating that despite LITERS of sodium bicarbonate being pumped into my veins, my kidneys are stressed by the chemo.  Supplemental oral sodium bicarbonate can restore me to neutral but we are monitoring and watching many times a day.  This simple check reminds me of the tremendous impact the cumulative effect of the chemo is exerting on my body  as it does its good work!  My job is to eat, rest, relax, and let the meds do their job!

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The anticipation of the canine visit was surpassed by the reality of oh-so-CLEAN-and-SMOOTH coats, eager kisses, furtive exploration, and then quiet sleeping hounds in laps.  Sadie and Baxter do not disappoint.  CAROLYN never disappoints.  Yes, she had prepped the paperwork, gotten doctor's orders, undergone a rules briefing, etc etc but in the end she simply knocked on the (locked) door at the top of the staff stairwell, was quickly let in by a (surprised but smiling) RN, and trotted the hounds down the corridor to my room - no questions asked, no paperwork demanded.  Just lots of oohs and aahs from the staff as the pups clickety-clacked down the hall, straining at their leashes, sniffing at the floors.

Have you noticed that dogs make people smile?  We had a steady stream of hospital staff (known and unfamiliar) who made their way to room 132 to meet some incredibly friendly and cuddly hounds.  Baxter and Sadie were calm - no barking - and greeted all of our visitors with wagging tails and interested smiles.  Obviously, it was a lovely and restorative afternoon.  I DO like being with these calming animals.  And in all honesty, I am not sure that I would be weathering all of my chemo-recovery couch time as well as I am without the presence of Baxter and Sadie, stretched out alongside me, breathing with me in tandem, settling me into health.

"Happiness is itself a kind of gratitude."

Wednesday - June 27, 2012

16 hours into my 24 hour methatrexate infusion, Mr. Cow and I are enjoying a sunny window, Wimbledon, Jonathan's book of NYT crosswords (for pencil) AND the Los Angeles Times crosswords puzzle which I can access online.  My NYT subscription together with Words With Friends and other interactive apps are currently blocked by the VCU server but, no worries, Carolyn is planning on sorting that out soon when she meets with the head of IT   :)    Anyway, my weary, sleep-deprived body has benefited from these positives - as well as many others - in my first day of admission here on Oncology!

Do NOT forget!

• Our happy Arlington home now has a very clean ratified contract!  The only possible glitch might be financing approval.  It is a bittersweet milestone to relinquish this special, cheery home where we grew up together as a family.  Joe and I are embracing our empty-nest status and having fun planning the renovations to our Williamsburg retirement home which we plan to move in to in ... 2014?  2015?  December?  Who knows!
• Joseph is about to pull the trigger on our plan to consolidate down to one car.  Farewell to our trusty Passat TDI wagon.  Welcome to a new MANUAL Jetta wagon!  With Jonathan taking charge of our manual Ford, we couldn't resist the fun of keeping a standard in the garage AND we love the fact that we could find it in a spiffy wagon.  Thanks VW.  
• I found 3 thought-lost items before I left for the hospital:  one precious Avon CT Little Silver Shop earring, one sweater, and one watch!
• Joseph treated me to a delicious fresh lunch salad - great mozzarella!
• Jonathan and Carolyn treated me to a delicious gourmet Italian salad dinner - great mozzarella! great tapenade!  great tablecloth!
• Carolyn recreated my traditional beverage of choice, bringing in some juicy lemons for my hospital water  :)
• I FINALLY saw the oft-discussed, official "spitter" sign from atop the VCU garage (Carolyn flipped the sign around in the deep, dark, dead of night so I could see it from my room!).
• I treated myself to another long talk with my beloved mother-in-law.  Just hearing Maureen's sweet voice on the phone is a tonic.  How I wish that Joe and I could make it north to this weekend's annual family reunion at Maureen's home!  However, a six hour drive (each way) and concerns about neutropenia have nixed this trip. Chatting with Maureen eased my conflicted mind.  We just can't make this trip.  Our plan is to host Maureen down here in Williamsburg as soon as possible.  Can't wait to make this plan a REALITY! 
• Megan and I skyped this morning despite my lack of microphone and camera on this computer.  She talked, her boyfriend Chris watched soccer (so funny hearing it in the background - "Hao qiu!"), and I typed!  It all worked out  :)
• The Oncology staff remains attentive, accessible, and good-humored!  I love the fact that so many faces are familiar and that our rhythms are understood and comfortable.
• I was persuasive in delaying my steroid injection from 2 to 6 a.m.  Given the fact that I was already wide awake at 2 a.m., a steroids injection at that point would have completely torpedoed the little sleep I was hoping to grab before sunrise.



Cloth napkins and tablecloths from home!

• During the darkness of early morning, my friend Kim and I were able to message about her evacuation from her Colorado Springs home.  The Conleys have also evacuated from the Air Force Academy.  What great relief to know that everyone is safe but how devastating to think about the many people who have lost their homes in Colorado.

Sleep proved highly elusive again last night.  Altogether I grabbed about 4 hours in 3 separate naps.  Despite this fatigue and my tingling neuropathy in my fingers, I am extremely appreciative that the effects of the chemo are negligible.  No nausea.  No vomiting.  I am one lucky girl!

And for a bit of additional perspective (in addition to the dire situation in Colorado Springs), down the road in Portsmouth my soon-to-be 78-year-old mother is currently undergoing a 7 hour surgery for heart valve replacement and triple bypass.  Sally and Rachel are at the hospital - waiting.  As Sally posted earlier this morning:  4 sisters and 2 hospitals.  It's been a hell of a summer.

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Fond memories of Rock Spring

Joseph just brought me the most amazing piece of mail!  I am overwhelmed and tearful, thinking back on my wonderful Rock Spring decade and the deep personal connections forged with families as we worked together to create a vibrant and responsive learning space for young children.  Thank you to Meredith and Kelly for a true gift.

Sunshine Nurtures the Soul

Tuesday - June 26, 2012

Home away from home

The logistics of managing hospital admissions must be daunting.  In fact, the entirety of hospital administration must be a stimulating and ever-changing challenge.  What is the solution when too many patients need access to the few hospital floors authorized to deliver chemo?  How can you respond when unexpected admissions push these floors beyond capacity?  Which patients are most likely to benefit from becoming familiar with the Bone Marrow Transplant Unit?   Yesterday I learned that the Oncology floor was pretty well full-up and braced myself for a return to Bone Marrow.  Somehow, I REALLY wanted to get back to Oncology.  It wasn't that I didn't LOVE the staff on Bone Marrow or that my treatment or food was substantially different.  I think the key issue for me is - first and foremost - sunlight.  The kids and my sisters would certainly not be surprised by the importance of sunlight in my world view and general demeanor.  Sally in particular loves to joke that Joe and I feel that our sunlight-filled new home is STILL not sunny enough so we are planning renovations (new skylights, new wall of windows in the master bedroom, vaulted ceilings, tubular skylights in closets and bathrooms, etc.) just as we did in Arlington to flood our sweet little rambler with SUN!  LIGHT!  LIFE!

Sunshine and blue skies!

So when I phoned into Oncology this morning to find out where and when to report for cycle #3 of chemo, I learned from the floor secretary that only one single bed was available for five planned admissions today.  I teased her that I was willing to bribe staff with cookies and treats to gain admission to the floor, reminded her that my sister Carolyn has become FAMOUS at VCU for having Tropical Smoothies delivered to my bedside (a situation that could certainly be duplicated for hospital staff), and then .... honestly let her know that I was happy to go back to Bone Marrow.  Since I was familiar with the food restrictions and the smaller spaces of the Bone Marrow rooms, I was more than willing to be bumped from Oncology.  In addition, since I may indeed end up on Bone Marrow for a transplant in the fall, it made sense that I should go.  Imagine my surprise when Antonette called back and said that I was returning to Oncology!  Imagine my happiness to have a room with a view of a wide-open sky!  An open blue sky framed by a 5 foot wide window is far superior to a view of a brick building framed by a 2 foot wide window.  I am SO happy!  Sunlight fills the window frame and nurtures my spirits.  Here on Oncology, I was welcomed by familiar nurses, care partners, and secretaries.  It feels like an old-fashioned reunion!

Oh, and just because Megan and Jonathan KNOW that I love the nerdy numerology aspects of life, I must note that I am now in room 132 (12 x 11 = 132) which is perhaps not as exciting as my previous room 144 (12 squared).  Nonetheless, multiples of 12 are always a wee bit invigorating, yes?

Not A Wink of Sleep ...

Monday - June 25, 2012

.... Who knows why but - despite best efforts and crushing fatigue - I have been up ALL night....  Somehow, I am cognitively alert, chasing various internet threads and wormholes through the wee hours.  Since last week's 71st anniversary of the launch of Operation Barbarossa, I have been trolling through info on the Soviet military response to the Nazi invasion.  The night is long and my knowledge base of the Eastern theater is thin so I've been keeping quite busy.

Joe and I are off in about 90 minutes to VCU where I will begin cycle #3 (even cycle) of my Hyper CVAD protocol.  Today is a daytrip where I will receive chemo via a lumbar puncture ("interthecal" = great Scrabble word) then a 2+ hour infusion of Rituxan (while I nap, perhaps?).  I'm hoping we'll be back by 2 p.m.!

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Home by 2:15!  Bloodwork = strong.  Intrethecal methatexrate and cytarbine = comfortable.  Rituxan = infused.  Now it's naptime!  

Feeling Grateful

Sunday- June 24, 2012

Slipping downstairs after 5 hours sleep, I stop at the top of the steps to enjoy a moment of gratitude.  I am headache-free, seeing properly, and surrounded by happy, positive, interesting, and oh-so-helpful people.  Just look at that beautiful boy on the couch!

The familiar view at 4 a.m.

Cancer treatment is NOT where I had expected to be just a few months ago.  With our retirement plans morphing into another job assignment (with Taiwan as our strongest option), Joseph had managed to switch an Asia-assignment to a terrific job in San Francisco, a city we both love that also affords easy access to our U.S.-dwelling children.  I was bereft at the thought of leaving my school after finding such a unique and dynamic community after SO many years awaiting a return to the classroom.  While job hunting once more was not rocking my boat, I was happy to have an ESL endorsement for California licensing and to see what opportunities might turn up:  Chinatown, perhaps?  Anyway, here we are - an unexpected health crisis later - and Joe and I are NOT in the midst of our pack-out, the cross-country drive with dogs is OFF (and, gosh, we really are going to have to figure out how to get the cat west), and I do NOT anticipate working for at least another year in any capacity other than "substitute".  It's been a wholesale change.  Now my priority is to embrace my cancer treatment and to purge the lymphoma. 

Am I disappointed at this shocking change in life plans?  Actually, not really.... I'm not sure "disappointment" has surfaced.  I am still incredibly surprised (What happened?  How could the familiar and predictable go so far off the expected trajectory?) but my overwhelming feeling is one of gratitude that in this lymphoma lottery, I have drawn the cancer ticket rather than the children.  I also feel incredibly grateful that Joe and I are weathering this challenge at - what actually might be - an opportune time.  Both Megan and Jonathan are adults and fully ensconced in their personal journeys.  I am no longer in chauffeur-mode or support to young children and the children have actually reversed roles (yes, I feel some guilt) and been phenomenal nurturers.  Joseph is in a familiar job with great support and some flexibility.  He has been able to extend work in Williamsburg through December and we will relocate to San Francisco at the end of that month. I have finished my Masters program and (finally) gotten my teaching license.  Carolyn has uprooted her entire family for the summer to be here as a plugged-in, empathetic, hands-on, comprehensive partner for me.  She continues her consulting work every morning from her computer /telephone while the children keep independent and busy around the house, making us smile with their cheery demeanors.  Finally, my Matoaka school community has kept the entire family going with food, visits, well-wishes, and classroom clean-up (THANK YOU 1st grade team!).  What was I thinking when I first proposed completing the first round of chemo and then moving to San Fran to complete the protocol?  The thought of continuing on with our original plan was tempting but, in the end, staying here in the comfort of friends has been the greatest blessing. 

All in all, I am incredibly grateful.  Grateful for the health of my family.  Grateful that the chemo is having results.  Grateful for companionship, friendship, and love. Grateful for the sun finally coming up on another Virginia summer day!

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No naps, two outings (around camp), and terrific visits with family and friends!



As Carolyn says, I have stretched myself hard today and am now fading fast.  My HOPE is that I will get more than 4 - 5 hours sleep; a 3 or 4 a.m. wake up is a quiet time of reflection but I would like to rest before starting my week of hospital visits!

Highlights of today included Skyping with Megan in the morning; a trip out to the glorious York to see a new-to-me eagles' nest; a family pool trip with the young cousins; a sweet, smiling visit from two delightful young ladies (and their wonderful mom!); and a jolly dinner with Rachel and Don before they went back home to Winchester.  Casey is staying behind with us for a few days to enjoy some time with his Colorado cousins.  The children are genuinely charged to be with one another and I am finding their connections and laughter infectious and sustaining.  Oh how I enjoyed watching them in the pool together!  Although I may be drained, I have had quite an uplifting day!

All A-Tingle (but More Alert)

Saturday - June 23, 2012

Oh, these 3 a.m. wake-ups are becoming the norm!  With Joe and the Alzamoras happily snoozing upstairs, I come downstairs to find Jonathan splayed out and sleeping on the long couch, MLB TV generally on (as lighting?  as background noise?).  I take up my accustomed perch on the other couch, turn on the computer for BBC, pull out the iPad for some NYT crosswords distraction, and await daytime.  Jonathan is so sweet, sensing my presence and half-waking to ask periodically if I am okay or need anything.  He is barely conscious yet is trying to help; what a thoughtful, terrific man!  Eventually this morning, I stretched out for an hour's nap at around 6 a.m. and have been up ever since.  The best news is that I am feeling somewhat more energetic and have rediscovered some strength in my major muscle groups!  My thumbs are extra tingly and I have lost some dexterity in my hands.  Ah, well, I'm sure it's temporary  :)

Today, the boys got me off of the couch and out of the house to David Everett's newly-opened DoG St. Pub!  How could I resist a trip to the newest incarnation of a favorite chef's restaurant?  All in all, we had a great meal and expedition and - screw the chemo or whatever restrictions I might have - I could not resist some sips of Jonathan's Legend Lager on tap.  A terrific brew to savor!

A Thumb-Tingling Kind of Day

Friday - June 22, 2012

After a typical 4 a.m. wake-up, I was thrilled to grab more sleep today!  Perhaps the effects of the steroids are finally waning.  Twice, I zonked out for long naps and as a result my cognitive acuity seems to have been a bit restored!  The couch remains my domain as I try to harbor my limited physical strength.  I am well-surrounded by my bustling, wonderful family who come and go bearing lemon water, lasagna, raspberry sherbert, everything bagels, and good humor as I slip in and out of naps.

As predicted at VCU, I am now experiencing some peripheral neuropathy in my hands, predominantly in my thumbs.  It is an odd tingling sensation that certainly makes me less dexterous than I already am!  Very odd.

Dan, Carolyn, and the kids had an active day on base kayaking in the creeks, swimming at the pool, biking around base, and then going to a film in the midst of an awesome afternoon thunderstorm.  Their normal rhythm and activity is grounding and affirming.  I feel so fortunate that they are here! 


Dusk is not as innocent as he appears.  He launched the day with a vigorous bout of cat vomiting at the top of the stairs.  Jonathan woke up, went to the rescue, and cleaned it up.

Better Day, Birthday Fun

Thursday - June 21, 2012

Yeehaw!  Back from Dalton and ensconced on my reliable (although all-too-familiar) couch by 10 a.m.!  Thank you Neulasta for bolstering my white counts and getting me in and out of the clinic without any transfusions!  Thank you Carolyn for getting me back and forth to Dalton within 3 hours!  Thank you Jonathan, Carter, and Daniel for the yummy apricot birthday muffins that greeted us upon our return home!  Thank you Joe for getting home soon!




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Two people who are NOT in the hospital!

What a happy day!  Joseph was home as I emerged from a noon crash-on-the-couch and with his return everything seemed to calm and slow.  He is well and under good care and all feels right with the world.  We are so glad that he is home and even more proud that he aced his stress test.  The issue seems to be related to potassium absorption.

My physical low continues to be an overwhelming presence.  At Dalton this morning, our nurse confirmed that this physical response seems to be my chemo side effect for this "odd cycle."  The steroids have compounded the problem and thus I become more and more exhausted.  Still, the idea that I cannot CONTROL and ORDER my muscles to do as asked ("just stand up for goodness sake!") is unnerving and a bit of stress.  I do NOT like being less than optimal and am doing my best to roll with it.  "CALM ACCEPTANCE" is a lovely term that a friend recently offered and I have adopted this short phrase as an adjunct to a favorite (and my homage to an alcoholic childhood home) saying:  the Serenity Prayer.  However, calm acceptance is not easily achieved.  I am working on it :)

Non-couch highlights of today included Dan's arrival in Williamsburg for the weekend (a surprise for Daniel!), a quick dinner outing, and a Skype conversation with Megan and Chris from their apartment in Beijing!  The Alzamoras are happy that Megan is sporting her Devinny Elementary tee-shirt in Asia  :)

The Ammiratis and the Terrible, Horrible, No Good, Very Bad Day ....

PART II of Wednesday - June 20, 2012

ALERT:  ALL IS WELL NOW and of course, me being a true Pollyanna, I will focus on the positives at the end of this post BUT the weirdness, stress, bizarro-world of yesterday simply cannot be avoided.  How stressed was it?  Even Carolyn ended the day by saying that she was feeling stressed out.  Now that's an objective measurement of a Terrible, Horrible, No Good, Very Bad Day ....

Yesterday's most impactful news is that Joseph spent last night / tonight in the local hospital.  Over the last dozen years, Joe has intermittently experienced some heart palpitations that have roused him from sleep and caused great discomfort.  After another episode Tuesday night, he went to the doctor yesterday afternoon and for the first time the EKG picked up an irregularity.  Given the fact that no condition can be treated until it is discovered, we are feeling relieved that something finally showed up.  Joe was monitored and treated in the ER and then on the ward, has consulted with a cardiologist, and will be having a stress test this morning before being released from Sentara.  While we are awaiting specific advise going forward, apparently Joe has no muscle or systems damage and will be able to manage any future episodes with a beta blocker.  Obviously, he will be following up in detail with the cardiologist.  We are all on tenterhooks and eager for him to be back home!

Yesterday, my physical health was at an absolute nadir to date.  I simply had no strength.  The steroid high has stolen my sleep thus compounding the chemo's "odd round" energy-sapping effect.  At one point in the craziness of late afternoon / early evening, I found myself alone in the house and thinking that I could do SOMETHING to contribute, I tried to tackle the homemade dog-food-making task.  When I found myself sitting on the floor, unable to stand up, dealing with an automated COURTESY FRAUD CALL from our main credit card and cursing up a storm (least opportune timing EVER), I was most concerned that Carolyn was going to get home, find me stranded, and deservedly kick my butt.  I eventually managed to drag myself back to the couch and accept the inevitable - basically no more physical work for the rest of the day.  I was / am fully stranded.

So the POSITIVES!  My family and community ground, embrace, and nurture us even on the oddest, weirdest day ever!

Time to chill out

•  I awoke from a surprise bit of torpor on the couch to find a glorious assembly of fruit, cheese, and other delectables in the kitchen!  Joseph had already left for the doctor so it truly was / is a mystery appearance and I am overwhelmed and grateful for the food and meal contributions that have been donated during this challenging period.  What a thoughtful and supportive community!  Thank you, Matoaka!
• Carolyn, Carter, and on-crutches Daniel made two trips to Matoaka to empty my classroom.  There, they found Susan, my amazing colleague, tackling this same overwhelming task and - building on other peers' work earlier in the week  - they were able to cross this crushing obligation off my to-do list.  Arrgghh - my room has been a wreck since I fell ill it New Year's.  What an impossible task to ask others to do; I am enormously grateful (as well as horribly embarrassed). 
• At Matoaka, Carolyn was bolstered by an energy-infusing hug that spanned person and space to warm me and pick me up here at home.  Carolyn, Carter, and I were all boosted immeasurably by the life force and love of a special person who simply opened her heart and arms to connect and share. Connections and love are what we are all about.  Being open to love and intimacy of emotion feeds the soul and body.
• Jonathan came home - to the rescue!  How would we have managed the day without him?  Helped by Daniel who made an informed and victorious return to the Sentara emergency room, Jonathan ferried materials and visited Joe at the hospital.  Then he moved and stacked boxes, picked up dinner for a crowded house, and foraged ice cream.
• Megan communicated via email that all is well in her apartment and in Beijing.  She may have wi-fi and phone soon so contact will be smooth.
• CAROLYN!!  Works her job part-time from the house. Entertains and enjoys her children.  Maintains the house.  Walks / runs the dogs.  Reminds me that my job is to rest.  Keeps me hydrated with lemon water.  Makes me smile.  Keeps me laughing.  Keeps it real!
• DAN!!  My smiling, cheering brother-in-law will be joining us this weekend from Colorado.  Daniel does not yet know and will be incredibly surprised  :)   Carolyn and Daniel will be "exploring" the train station when Dan arrives late this afternoon!

So ... another 4-hour night to usher in today's 51st birthday.  This lack of sleep has allowed me to write this update and thus purge my brain / find some peace but I am looking forward to getting some more snooze-time soon.  It's been a long time since I have been well-rested.

Carolyn and I are leaving in an hour for blood work at VCU's Dalton Clinic.  Once again, our goal is to get there as doors open, whip out the bloodwork, wait for those good results, and then head home.  Fingers crossed that I will need no treatment!  All being well, Joe should be home and happy when we arrive back by noon!

A Kiss on the Back of a Bald Head...

Wednesday - June 20, 2012

... is quite a friendly way to begin a day - even if the sweet gesture is from an alert dog and not a still-slumbering husband!  Better yet, today's awakening came when it was already daylight!  No 3 a.m. double-takes with many hours splayed out before me.  I'm roided up for sure - pretty jittery and unfocused - yet am on a more acceptable schedule.  This may be the workable plan to get more rest next steroids-round.  I'll try to grab a quick nap just before juicing up in the late afternoon with the thought that I'll be able to make it through til dawn.  Rest assured, Sadie will be waiting with her morning greeting as I stir!  My new hairless status allows me to enjoy quite a different sensation from her traditional "good morning."

Morning thoughts:  Do all parents of grown children do a check upon waking?  Today, I awoke thinking that Jonathan is back at Joe's mother's house in New Hope, PA having enjoyed a Tuesday night Mets baseball win in his first NYC trip of 2012. Megan is wheels down in Beijing, meeting up with her boyfriend who has just flown in from Hong Kong, and making their way into town for a Wednesday night dinner.  Okay.  Pulse check?  Still high but not scary.  Plans for the day?  Nothing medical and hoping to have some physical strength to make a foray to Matoaka to do a tackle of my classroom.  My dear friend Clare put a new mantra into my mind a few years ago, saying "not to let the perfect get in the way of the good."  Even if I can't FINISH all that needs to be done at Matoaka, I can make a quick dent and get moving (assuming I have the strength to move!).  Another good mantra since I'm on the subject:  "Don't put things down, put things AWAY."  And lastly, my most pervasive mantra:  "Focus on the positives."

Enough steroid-induced mantra-sharing:  back to my NYT!

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Pre-noon and I have roused from a snatched one-hour nap to return to a state of weird physical underperformance.  My body looks fine, I may appear to be functional, but WOW my oomph is gone.  Physically, my muscles are still not performing and I am forced to rest.  Given my fatigue-induced lack of mental acuity, I am also not operating on full cylinders on the cognitive end. 

Soooo ... I am learning to adjust to new standards and limitations brought on by these chemo treatments.  On this last day as a 50 year old, I am certainly aware of my project-oriented needs to feel self-productive and contributing.  I LOVE being busy, learning new content, and interacting with everyone around me.  I am active, not passive. This new phase may bring me further introspection and respect for just being ... rather than growing and moving.  I simply cannot do much but exercise my brain and rest my healing body.   That's my priority!

Up All Night!

Tuesday - June 19, 2012

When I awoke, I was so happy to monitor my pulse and discover that it continues to be less elevated!  I can't say that it's low but it is now far below its 135 bpm peak and perhaps approaching 100 bpm.  Progress?  Trending in the right direction?  I'll take it!  My tachy phase seems to be over - hurrah!

The less optimal news was that I had this epiphany at 3 a.m. Being on steroids has gotten me up and going (?) in the wee hours once more.  Time for some quiet NYT crosswords work as I wait for the house to stir.

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A weird, odd, feeling-like-I'm-underwater day....  I almost ran the week of May 21st NYTs (Friday has some blank cells), spoke to my Beijing-bound Megan a few times, thought about Jonathan's much-anticipated NY Mets outing tonight, did much organizing / purging under the encouragement and with the help of Carolyn while basically leaned against the walls and floors for physical support.  Finally took a 2 hour nap before this afternoon's last of-the-week steroids dose.  I'm not sure I am feeling more refreshed, am certainly NOT more functional, but I am enormously relieved to KNOW that my body has had some rest!

A Tale of Two Hospitals

Monday - June 18, 2012

Good news:  Joe and I made it by 8 a.m. to Dalton Clinic and my labs were done my 8:35.  Typical news:  Lab results took more than 2 hours to turn over.  Best news:  Platelets and neutrophils were still manageable and we were able to LEAVE without any treatments!  Hurrah!

How could a fall on this Trikke cause such a wound?

But today, Ammirati lymphoma takes a back seat to Alzamora "avulsion." Joe and I were home by 11:30 only to find out from a waiting Carter that Daniel had suffered a hand-sized avulsion (major skin flap laceration) to his outer right calf while riding Joe's "trike" around our neighborhood.  He had been transported by our military base ambulance to our local Emergency Room and Carolyn had followed behind in the car.  Yikes!  13-year-old Carter was very calm waiting at home (after cleaning up the blood) and she and I jumped in my car to the Sentara Emergency Room.  Daniel has been extremely brave - it is QUITE an injury.  He is now stitched up with uncounted number of internal stitches and 27 external stitches  - as well as derma glue on a secondary laceration on his inner left thigh.  What a fall!  The Alzamora trio remains at the hospital awaiting a compression wrap and will then hopefully enjoy a well-deserved ice cream outing.

I have retreated home to eat, write, and now to try to eek out some sleep.  The steroids continue to wreak havoc with my sleep - only 4 hours last night.  I must be exhausted but can't pull the trigger on some downtime.  What a difference a week makes!  My heart rate is better regulated today and my physical stamina is returning to the extent that I am not plotting how and when to move from one place to another.  At Sentara, I hand sanitized like crazy, remained isolated from any other patients, and tried NOT to touch anything.  My darling neutrophils may not be at the danger level YET but an emergency room is not a destination spot for my sketchy immune system.  Carolyn and I were ultra cautious.

On the Juice

Sunday - June 17, 2012

Yesterday I began a four day course of dexamethasone to supplement Friday's vincristine infusion.  As it did in the hospital, this steroid has revved me up and impacted my sleep.  Dexamethasone is more than 6 times as potent as prednisone and I definitely feel its effects.  On top of my already wakeful state, the odds of a sold Christine-like 8+ hours were low.  Coupling this wakefulness with my high pulse and my physical weakness is taking some adjustment of expectation.  But I do believe I may have found a solution ...

Being generally a glass half full type of person, I see this wakefulness as a means to indulge a long-standing guilty (and more mindless than email) pleasure.  The steroids' GOOD news is that I am using its infused energy not to tackle lesson plans as I did when I was successfully juicing in February but to tackle the Sunday NYT crossword in the wee hours of the morning.  Last night, I relocated to the downstairs couch, welcomed the hounds as they snuggled alongside, pulled out the iPad, and whipped out today's and then 4 more Sundays before I could fall asleep.  I have loved (and obsessed) over my paper and pencil NYTs over the years and will even confess (in the comparative anonymity of the written word) to having a special box where I organize and collect the completed, in progress, and pending.  Oh yes, I love my NYTs... having been converted by my friend Delores Jackson at PS 183 who did the daily every day on her way to school - in ink.  Now, the iPad app with its archive and timer (!!!) is REALLY rocking my boat.  I am at a whole other level of self-competitiveness!  Oh my my..... AND when the hospital server does NOT allow interface with my newly beloved iPad NYT Crosswords app, I keep my pen and paper NYTs handy, try to break my WordFlick record (approaching 30,000 points folks!), and research post-1600s European history (I am currently following internet wormholes about Britain's Queen Anne).  So, a Type A, no longer working, on steroids, and lacking the mental acuity and emotional resources to respond meaningfully to a plethora of pending emails, I take solace in my ability to fit trivia and bizarre background knowledge into a grid.  And I time myself  :)  I am a happy nerd.

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Carolyn and Joe are highly communicative about this day - day 13 - being the time when my neutrophils plummeted and I fell ill last cycle.  Our family mantra is "NO HOSPITAL ADMISSION" until cycle #3 begins on June 26.  With this knowledge and caution in mind, I was so excited to get out of the house to have breakfast with Carolyn and my dear friend Gina at artCafe 26, one of my favorite restaurants!  How wonderful to introduce Carolyn and Gina to each other and what a pleasure to hear Gina tell about her end-of-the-school-year!  I do miss the hustle and flow of the classroom and school.  Hearing about Gina winding down her classroom gave me a vicarious thrill!  Someday....

Rhythm, Interrupted

Saturday - June 16, 2012

Sleep has been sketchy the last three nights.  Obviously, I am over my collapse-on-the-couch-and-sleep-away-the-day stage for this cycle.  Now I go to bed feeling restless and unable to do one of the things that I really do best: sleep.  For 30 years, Joe has admired my sleeping prowess so it is a bit of a surprise that my physical exhaustion is not translating into snooze time!  Joe and I were both awake before 6 a.m. cuddling Sadie and listening to the birds.  Why in the world was I not sleeping away?  Oh well.  I revel in that first self-assessment of the day:  Double vision?  Fleeting and minimal.  Headache?  Non-existent.  Thank you, chemo.  Then I consider my new challenge of managing my pulse.  Still very high at rest.  Slow movements and minimal activity are again the order of the day.

In reading the NYT this morning, I challenged my general reluctance to read cancer blogs and finally gave in to Life, Interrupted, a transcendent blog by 23 year old Suleika Jaouad.  I highly - highly - recommend it.

High but apparently not TOO High

Friday - June 15, 2012

We are getting the hang of the Dalton Clinic dance and routine.  Perhaps the key factor is an early arrival, quick call to register, and then a dogleg right for labwork.  Ah, but here's a decision point:  blood draw from the arm or the port.  Well, obviously accessing my port is much more involved, requires masking up, serious kits of sterile packaging, and perhaps reclining with arm up to get enough flow.  I need to survey the waiting room and assess the possibilities ... and the decision is often an arm draw EVEN if my port will need to be accessed later in the morning for chemo.  The wait is shorter, the blood speeds right to the lab, and I am one step closer to seeing the physician and finding out if I need any blood replenishment.  Today was good news all around!  Arm draw was TOTALLY the right call (BOO-yah!), my blood work came back strong (yay platelets!  yay hemoglobin!), and the 5 minute vincristine infusion was truly only 5 minutes (after the 70 minute wait for the pharmacy to fulfill the scrip).  We were in and out in 3 hours - a new record!  Joseph and I kept busy with our iPads and New Yorkers so time really does pass.

I researched the history and legacy of John Dalton today. 

One focus of today was to query about my heart rate which has been consistently high during this "odd" Hyper CVAD cycle.  On Monday, Dalton supplemented my fluids and my rate came down.  Today's vitals showed a 135 pulse (strong bp and oxygen) which might just be my highest yet.  I am getting winded with activity and - in this situation - the activity was simply walking from Dalton's waiting room back for my initial assessment.  I surprise myself when considering what is now "activity."  Karen, the oncology nurse who had spoken to me on the telephone earlier in the week, checked on me and talked "all things pulse" and then we consulted with Kevin as well.  Neither seems overly concerned IF I can manage my heart rate by resting and tempering my exertions / activities.  So, I'm high but not too high.  AND if this side effect is my pattern and I have successfully escaped nausea and vomiting then I say "Glory Be, I'm sitting back down on the couch.  Please pass my iPad so I can do WordFlick and the NYT crosswords."  Can a Type A ratchet it down?  I believe the answer might be ... yes!

A Quick Visit to Matoaka

Thursday - June 14, 2012

A new treasure from Team 101!

I am oh-so-very-happy to have managed a brief drop-in to my classroom this morning!  It was terrific to see my colleagues and - of course - my students :)   Perhaps it's their haircuts or clothing but I do believe that some of these lovely first graders might have indeed sprouted up a little bit in the last 6 weeks!  I particularly wanted to go back to thank them for the kindness they had showed me during my months of pain and illness.  Yes, much curriculum focus is obviously on reading and mathematics skills but these wonderful children showed such kindness and flexibility when interacting with a patched-eye, headache-riven teacher.  They were invariably sweet and accepting, not making me feel even more odd as I covered my eye to read during group or escort them down halls.  This end-of-year is certainly not what I had anticipated.  Yet I am so grateful for an amazing substitute who never made me feel that I had left her in the lurch, a first grade team who pitched in and let me step out the door seamlessly, an admin staff that was invariably supportive, and a community of parents and students who have been a continual source of nurturing and delight.  Matoaka has been a warm and stable place for me these last two years; here's hoping I will be able to work there post-San Francisco!

Oh, those stairs!

Wednesday - June 13, 2012

Having definitely woken up to a refreshed sense of energy, I overdid it a bit and am now ratcheting it back down....  Oh, I was so excited to feel a surge of physical prowess, had enjoyed a lovely phone call that grounded me once more in a world beyond cancer, and then walked straight up the stairs to get dressed.  Oops!  Straight up the stairs is not something I can manage right now.  Silly me!  I ended up so winded that I was concerned I might faint.  Back to the couch with lots of water and an attempt to stabilize my breathing and pulse.  Carolyn phoned into my nurse at Dalton and we talked about possibilities and remedies.  My nurse actually asked:  "And how far are you from the hospital?"  "Too far!" I replied as I promised to sit and be still and to let everything settle down.... 

I am indulging myself in some happy classroom activities, prepping some items for my wonderful oh-so-missed students!  They are truly a remarkable group!  How lucky I am to have met them and to have had so many good moments together.  I am dazed and surprised that my health has not allowed me to get back to them BUT come hell or high water (or fatigue and being winded) I am visiting this week!

Confined to the Couch

Tuesday - June 12, 2012

Even the best laid plans seem to be waylaid by crushing fatigue!  My legs simply have no strength and the appeal of a nap is oh so tempting ....  Ah well, the pups snuggle in and give me good comfort as I slumber away and heal....  Carolyn got me out of the house for a quick soup stop at Blue Talon and I felt like we had run a marathon! 

If this week is my "bad" week then I will accept this enervating fatigue and feel incredibly relieved that chemo side effects are no worse!

The Importance of Hydration

Monday - June 11, 2012

So, Carolyn was definitely right; I have not been drinking enough.  We did in fact make it up to Richmond and were first in line for Dalton's doors' opening at 8 am.  BUT our best laid plans to get my Neulasta shot and slip away back home were put on hold because ... I have not been drinking enough water.  Ugh.  My vitals indicated I needed more hydration, I was whisked back to the infusion room, and I had one hour of saline (while I napped).  Poor Carolyn had to twiddle her thumbs while I docked us an extra hour at the hospital.  Yikes! I am more than a little annoyed with myself.  Lesson learned.

Still feeling incredibly weak - physically.  Walking and climbing the stairs are an unexpected ordeal and I am still trying to wrap my head around this new norm.

And as posted yesterday on Facebook, I took the bull by the horns and chopped off my hair last night.  Carolyn finished the job with a shaver.  Happy to say, the chemo is doing what it is supposed to be doing and I have full scalp patches on my head. There is still some fuzz but it should be gone soon.  I suppose the biggest shock is the difference in my coloring.  Going from darker hair to a white scalp is a change!

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Sally came up from Virginia Beach and prepared us a yummy Pad Thai dinner!  My taste buds seem to be responsive to strong tastes so it was a welcome and delicious meal.  Before collapsing for the evening, I enjoyed time with my sisters featured by some amazing photos Sally had found of our family's early years on Lincoln Lane and Dad's post-college years.  A very good way to end a fatiguing day.

Exhausted but Happy to be Home

Sunday - June 10, 2012

Jonathan left early this morning to return to Blacksburg, leaving behind some delicious homemade almond muffins that he baked from scratch last night!  Amazing!  What a yummy way to start my day!  Thank you, Jonathan!

Having never experienced this deep level of fatigue, I am making adjustments.  Walking - particularly upstairs - is strenuous and a bit shaky so I am trying to take it easy.  Perhaps it's a fine thing to have such sleepy roled models as my loving wee hounds.  They are expert resters.

Down to the last Drop ...

Saturday - June 9, 2012

Enjoyed a long, full sleep last night and a nap this morning while the doxorubicin continues its SSLLOOWW infusion.  I feel like I could sleep again sometime soon so the chemo must be doing its work!  Rachel popped in this morning (2.5 hours from Winchester!) arriving at 6:30.  Apparently, she watched me snooze for a while before going to hospitality house and managing to completely surprise Carolyn!  The three of us visited for a while before my nap and a Carolyn and Rachel outing to Carytown. But first, the girls posted more secret messages across the way  :)

A busy afternoon at the VCU helipad has us worried for these critical patients.  More perspective as we wait and give thanks for our own medical treatment.

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HOME!!!  As we came through the gate, Carolyn and I saw the first wee fawn of the season!  So very small and spotted.  What a great omen to begin my sojourn at the house  :)

Last Push (or Drip) for Round #2

Friday - June 8, 2012

My natural curiosities have certainly been set off by my lymphoma diagnosis.  While Megan, Joe, and Carolyn investigate current blogs, I go backwards.  An entire world of scientific discovery and research and clinical practice now occupies a huge wormhole into which I sometimes fall.  For example, the Hyper-CVAD protocol includes chemo that has roots in traditional folk medicine.  Today, I will have my first dose of Vincristine which originates in the vinca plant and has been used for centuries.  I will also have a 21 hour infusion of Doxorubicin which was isolated and then developed in the 1950s from bacteria found in soil samples taken from an Italian castle.  Here is where my interests just soar.  Who had the ideas to investigate these 2 avenues?  How much work and trial took place before the potential was realized?  Fascinating!

Jonathan has already arrived at 7:50!  So excited!  We are streaming the French Open semis and having some (illicit for him) breakfast!

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Guess what?  Chemo makes me sleepy ... and this "odd round" of Hyper CVAD causes me to retain fluid.  So today - with the encouragement of son and then sister - I listened to my body, put my feet up, and napped in the morning and then in the late afternoon.  A sleepy day with good company!  AND a long, hot shower!

Jonathan went home to Williamsburg mid-day, returning with Joe for an evening visit of Scattegories and World Cup Soccer viewing.  Carolyn is staying another night at the hospital's convenient - but certainly not anything but plain - hospitality house.  Have I mentioned enough how fortunate I am for her great humor, smiles, and company?  I am so lucky for all of this wonderful support!