"3 a.m. and All is Well"

Wednesday - August 15, 2012

Mr. Cow waits for morning

Vitals?  Blood draw?  Alarms from my bubbling sodium bicarbonate drip?  The IV steroid that has been pushed twice today to pair with my methotrexate infusion?  The rhythm and subtle grind that characterizes the sound of the infusion pump?  The sound of the floors being cleaned by that whirring / purring / humming ride-on machine that does circuits in the halls every morning between 3 and 4 a.m.?  (WHAT does it look like?  Someday I will just have to scope it out.)   Who knows why I am up in the wee hours - alert and ready for the day to begin .... The BBC World Service keeps me company with in-depth reports about the housing crisis in the U.S., drought in Western Nebraska,  disabilities in the Ukraine, and today's bomb in downtown Damascus ....  Hmmmm ..... Maybe it's time to queue up "Thistle and Shamrock" or Pandora and try to nap ....
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Success?  I suppose .... Two more hours of deep / delicious REM sleep disrupted by two  interruptions - one air-in-line alarm and one wake-up to get my vitals.  Uncle!  I'm getting dressed .... Sleep in the hospital is precious and elusive.

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Happiness is getting the bike back in my room :)  

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... but true contentment is having Joseph visit at the end of his long day at work.  Joe feeds, walks, and loves our affection-craved hounds (hysterical yesterday at the sight of Jonathan carrying bags into the garage!) and then hops in the car for the 50 minute drive to Richmond to spend some time with me.  He must be exhausted.  Every chore is falling on him, he is working a demanding job with much personal interaction, and he is my calm and comforting companion.

Joe is pulling heavy duty these last 8+ months dealing with my crashes and fears in response to debilitating pain and loss of vision, helping to ferret out a diagnosis, and now shouldering all of the household issues.  With my BMT, my function will be even more proscribed and Joe will pull in the slack.  I wish I could do more but the reality is that I simply cannot.  I have to rely completely on Joe.

30 years together and with this new challenge we fall back on our strong core, our friendship, our amusement in one another, and our love.  I am one lucky woman.

Lovin' Room 132

Tuesday - August 14, 2012

Jonathan moves me into the Critical Care Hospital

Getting the ball rolling is always the trickiest part of a chemo admission.  Medicine orders do not get submitted to the pharmacy until the patient actually enters the room and is "green banded" with an official admissions bracelet with medical record number.  Then you wait.  The start time for the chemo is critical because it dictates the waves of chemo to come; each round is spaced out at a specified interval from the time that first bag of chemo is hung.  For this even round of Hyper CVAD, I begin with a 24 hour infusion of methotrexate which must be purged from my body (untraceable in my blood) before I can be discharged.  Getting this methotrexate hung and dripping into my port is the goal ... and it usually takes about 4 hours after I arrive before this chemo ball rolls.  As I post, I have been settled into room 132 (my third visit in this bright room!) for two and a half hours and am still waiting for the RNs to arrive, covered in protective clothing, eyewear, gloves, and masks and carrying the chemo bag that will soon slough off the cells in my digestive track.  Bring it on, pharmacy!  Release the drugs!  My port is accessed, the sodium bicarbonate is dripping, my pH is perfect, and I am ready to go!

I do love being on the Oncology Floor.  Not only am I in a familiar space with a wide, bright window but I also know so many of the staff that it feels like a comfortable and nurturing community.  I have worked with both of my (amazing!) RNs for more than a few days and Dawnett - today's Care Partner - might have been paired with me on each of my five admissions to this floor.  Hugs and catching up with today's team, boisterous visits from staff assigned to other rooms who have seen that I am back for treatment, cheery notes from some night staff saying that they will see me later this week - what a lovely welcome!  What an incredible community!  I am so lucky to be here at VCU, benefiting from the expertise, caring, and connection with such a remarkable staff.  Good energy reaps good karma. Blessings abound.

After driving me to VCU and settling me into my room, Jonathan drove back to Blacksburg to begin his autumn semester at Virginia Tech.  We will miss him like crazy having been spoiled with a week of easy company and relaxed time with our wonderful boy.  I hope that all four of us will manage a quick rendezvous when Megan comes east from Davis in mid-September.  Until then, we have phone, internet, and Skype!

PET Scan Results (!) and Pre-Admission Procedures

Monday - August 13, 2012

Jonathan is coming with me to Richmond this morning for my pre-admission Rituxan infusion and intrathecal chemotherapy.  Gosh, this whole dance seems pro forma at this point.  We have the rhythm and the expectations down! Still, I always have a baseline concern that I will need blood ... or ... platelets ... or saline ... or something completely unexpected before they let me come back home for my last night before hospital admission.  Fingers crossed!

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Well, that was a LONG day:  9 hours door to door with port access ... and blood draw ... then chemo pre-medications ... followed by 90 minutes of a Rituxan infusion in the not-private-Rev.Jim-roaming-treatment room ...  then more waiting room time before a lumbar puncture with intrathecal chemotherapy ... and finally 30 minutes of flat-on-my-back rest to disperse the medicine.

A LONG procedural day highlighted by Kevin bringing me the very best of news!      The results of Friday's PET scan are in and they are ALL that we had hoped for:

 "Complete Response" to the chemotherapy!  Hurrah!  "Marked interval improvement of lymphomatous disease without discrete foci of abnormal radiotracer uptake, consistent with positive treatment response."

I'm not quite sure that I have fully absorbed this amazing news;  my head is still future-focused on the upcoming Bone Marrow Transplant and consolidating this gain.  Bottom line:  the Hyper CVAD protocol has purged the detectable lymphoma from my system.  My bones, liver, lung, and orbits are all clear.  This PET pathology report reads like a text rather than May's inventory of SUV numbers cluttering up the pages.  Now, we need to double down.  Diffuse large b-cell lymphoma is aggressive and due to this very aggressiveness, it responds well to treatment.  However, its aggressiveness also causes it to recur even after "complete response."  A Bone Marrow Transplant will (probably) seal the deal and forestall a recurrence (but put me at risk for graves-v-host disease and other dangerous conditions).  What kind of BMT?  How do we maintain this progress?  At what physical cost do we consolidate this victory over lymphoma?  My mind continues to debate the options .... Time for a second opinion!

Jonathan escorted me throughout the morning and brought me out to celebrate the fabulous PET scan news.  He may have tracked down the best hamburger in Richmond (if not Virginia)!  AND, in anticipation of my upcoming hospitalizations and home-incancerations, he was so sweet to clarify the take-out menu and procedures.  Our thoughtful boy!

Boxing Up and Sorting Out

Sunday - August 12, 2012

Some shelves are staying intact  :)

This weekend's mild energy level has allowed me to continue to get organized and to feel somewhat productive in prepping for my anticipated BMT-induced sabbatical from home-living.  Joe has pointed out that if we are indeed still moving to San Francisco in mid-June (and this option remains highly tentative) then my schedule, location, and health may not provide much opportunity to help him get ready for the move after I begin the bone marrow transplant process in mid-October(?).  When that treatment begins, I will be living in the hospital, then in Richmond, and then (probably) on a futon in a short-term rental in New Kent County somewhere around exit 214 -- closer than Richmond to Joe's work and within 30 minutes of my mandated tether to VCU.  Perhaps I will make it back into our Williamsburg house by early spring but even then who knows what my energy level will be like....  AND, with my complete lack of immunity brought on by the BMT, I will still be prohibited from any cleaning / interaction with dust.  No cooking, laundry, cleaning etc.  In fact, Carolyn has researched bio-cleaning / crime-scene services to prep the two short-term rentals and our Williamsburg house before I move my immune-compromised self into each space.  Deep cleaning from experts will help me stay clear of infections.  As the BMT lead physician explained, I will be like the "girl in a bubble" until I am able to receive my "baby shots" (MMR, polio, etc.) next summer.

So, NOW is the time for me to brave the dust and to sort through the accumulation of three years of full, stimulating, and busy Williamsburg living!  Time to tackle the graduate school materials and all of my classroom resources.  Time to weed out the children's possessions and ready them for shipment to their new independent locales.  Time to organize, pare down, and sort out.  As a bonus, this focus is keeping my mind happily occupied with cheery memories of people, accomplishments, and challenges and giving me a project!  ... And, of course, I can work alongside the quiet company of Joe and Jonathan as we hang out and relax on a grey, steamy Virginia weekend.

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And I did indeed manage to get much organizing done!  Bundles of recycling into the blue bin.  Resource materials boxed and readied for future use.  Children books inventoried and stored away.

However the highlight of this happy Sunday was getting out of the house for brunch with Gina, Savannah, and Jonathan!  "Nearly normal" feels terrific!

"Weekends don't count ...

Saturday - August 11, 2012

Ele-phonse: being pointless

... unless you spend them doing something completely pointless."  ~ Bill Watterson (Calvin & Hobbes)


This last weekend before chemo round #5 of 6 (two-thirds done already!), I plan to shepherd energies and strength, readying for next week's 24 hours of methotrexate infusion (and the ensuing mucositis), bracing myself for another 5 days / 4 nights in the hospital, and just enjoying the company of Jonathan and Joe.  While I remain a bit hamstrung by physical fatigue, I need to sate my "get-it-done" bent and achieve something completely tangible this weekend.  In this case, my goal is to organize and finish packing up my teaching materials and graduate school texts.  And to rest up ...

The Fundamental Importance of JOY!

Friday - August 10. 2012

Yesterday, Jonathan drove me to Matoaka so I could retrieve the “joy” from my former classroom.  Yup - literally!  We went on over to clean up some loose ends and to pick up my “joy!”   Many years ago, RSCP mom Jamie Leonard used the thumbprints of our many preschool students to create a sinuous, evocative Chinese dragon, curled into the word “joy.”  At Rock Spring, I worked in the front entry of the school, guarding the door perhaps and certainly remaining within earshot and instant access to any of my classrooms;  I had no real RSCP office to display my “joy” so this happy dragon peered down on me from my home office.  It seemed to me that it was waiting for circumstances to align in such a way that I could fulfill my decades long goal to return to an elementary classroom, to share my joy as an instructor rather than as an administrator. 

I LOVE how this joyful dragon is a composite piece, created from so many tiny thumbprints, assembled into a meaningful and lovely whole.  I love how that one word – JOY – embodies so much of what I feel in the classroom and what I hope to share, nurture, and preserve in education. This joyous dragon waited patiently on my shelf a long … long … time and gave me many smiles through the passions and tensions of preschool work, the stimulating demands of graduate school, and the natural concerns that perhaps a 50-year-old aspiring first-year teacher would not have such an easy time finding employment.   Last August, bringing this lovely RSCP gift into my new Matoaka classroom felt like I was linking my past educational experience and comfort to my new challenge.  “Joy” and excitement!  Happiness all around!  I loved having this dragon overlook my first grade classroom throughout the year and how some students made spontaneous connections with either the (difficult to read for a first grader) letters or the fact that it was indeed a (Chinese!) dragon.  And what exactly were all those dots?  Sunflower seeds?  Acorns?  Smarties?

So Thursday, when we returned to retrieve this “joy” - temporarily – from the classroom to return it to its place here at home, it felt like more of a finalization of my wrenchingly-abbreviated teaching tenure than simply handing in my keys.  Ah, there was a strong sense of finality in that moment and I did indeed feel some twangs … but I feel confident that – at some point – my “joy” will be back up in a classroom once again.  In the meantime, I will savor my “joy” – once more - at home … while I heal ....

HAPPILY – and in an amazing stroke of chance – I was fortunate enough to meet up with many colleagues during our brief trip to Matoaka.  Most importantly, walking down the dark hall, Tama and I ran into each other.  In the building at the same time.  In the hall at the same time.  No previous communication about plans.  What absolute luck! I was so excited to be able to introduce Tama and Jonathan.   I felt completely energized by her hugs, her positivity, her smiles, and all of her support and help.  How fortunate I have been in having Tama as my cooperating teacher during my student teaching and then down the hall for company, laughter, and mentorship during my first year of teaching.  Yes, it has been an odd and unexpected year but I have not lost sight of all the blessings and joy that Matoaka and its community have given me.  Tama is atop that list.

Today I am up at 3 a.m. - once more well before dawn.  Most pressingly, I continue to be anxious about understanding and addressing Jonathan's weight loss.  It is also an important medical day on my lymphoma journey.  Jonathan is driving me up to VCU for a follow-up PET scan.  This scan will provide a contrast to my initial PET scan in mid-May that identified and measured the lymphoma “hot” activity spots scattered throughout my torso and abdomen.  The final report should come in next week.  Compare and contrast.  Venn diagram, anyone?  Let’s hope for  MANY differences.  I want to see a dark PET scan!

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Our four hours at VCU encapsulated the classic rhythm of waiting and waiting and waiting at the hospital for my name to be called, for tests, for results, for consultations.  It's the standard.  It's the expectation.  Just accept that the system takes time to process correctly and accurately, pick up The New Yorker or The New York Times on iPad, and just settle in for the wait.  Today we bopped between venues for the PET scan (results next week) and the bloodwork (strong all around!) before we finally sprang out into the sunshine.

How best to reward oneself for hospital duty and to enjoy some special time with your Napoletana-certified pizza connoisseur son?  Stuzzi!   For the record, while Jonathan may have voiced a slight preference for D.C.'s 2Amy's, this authentic pizza is absolute bliss!  A fabulous meal with my wonderful boy  :)

My Best non-Hospital Weeks?

Thursday - August 9, 2012

Refilling my pill box.  Can you believe it?

Yes, I am knocking wood like mad as I type out these fate-prompting words  ... but as Joe mentioned last night, I am certainly weathering these last two post-chemo weeks better than my three previous intervals.  Most obviously, I have NOT been readmitted to the hospital with neutropenia as I was after each of my even Hyper CVAD rounds.  In addition, the debilitating physical weakness and crushing fatigue of my first round of odd Hyper CVAD have been absent these last two weeks.  Even my sleep patterns are so much improved over what I expected during this steroids-heavy week.  Bravo! 

But why?  Can I replicate this success for the upcoming 2 rounds or is it just a fluke over which I have little control?  Oh, everyone knows how I enjoy having a role / some control and the thought that I might be able to influence my physical response to this chemotherapy protocol is tremendously appealing.  So what's been different?

• Extra week of recuperation and healing following the one-week postponement of chemo round #4 due to my E. coli infection and hospitalization.
• Two courses of prophylactic antibiotics to combat potential repeat of such an E.. coli infection.
• MUCH less interaction with the world.  I have been hunkering down in the house in an attempt to ward off another hospital stay.  NOT what I want to do but has it been a successful route?
• Avoiding naps has resulted in fuller nights of sleep.  Last night, I was out for more than eight hours with only one wake-up!  Hurrah!

I also am curious about what this improved sense of energy and health might herald going forward.  From mid-May's very first week of treatment, my restored vision and lack of migraines evidenced the chemotherapy's immediate positive effects in my left orbit.  Is my current improved physical state a reflection of the purging of lymphoma in the rest (less obvious and visible) of my cancer hot spots?  Tomorrow's PET scan will tell the tale.

"Animal Kingdom" ...

Wednesday - August 8, 2012

The hounds got me out and MOVING!

... (as Joe puts it) certainly has its pros and cons.  The hounds fill our days with connection, personality, and perpetual attempts to communicate their understandings and also their needs / desires / requests.  They really structure our days with walks, feedings, and delicious cuddles.  Dusk's interactions with us enjoy a less mutual give-and-take; we definitely serve him and his demands are often relentless and delivered in a less than polite manner.  This morning, Dusk had somehow remained in the house overnight and emerged to yowl at me and paw my head, awaking me from precious slumber at 6 a.m. - that was good news!  I had about seven hours sleep on my last day of steroids!  After chasing a very noisy cat away from the bedroom and downstairs towards his soon-to-be-filled food bowl, I started the day with a Dusk-induced energy rush, some shortness of breath, and a readiness to start the day.  I am functional, relatively alert, and ready to heal up, process my chemo, and get ready for next week's round #5 of 6.  Oops! First things first - I need to clean up the salamander parts off the kitchen floor - thanks Dusk  :)

Today is a relatively low obligation day.  No physician appointments for ANY Ammiratis.  Just a time to rest up and regroup.  Tomorrow, we return to the PCP for an initial read of Jonathan's early bloodwork and an EEG.  Friday is a red-letter assessment of "Partial Response" to my two months to date of this Hyper CVAD protocol.  I will have blood work followed by a PET scan that will then serve as a point of comparison with my initial, pre-treatment PET scan from mid-May.  Before and after.  How MUCH has the lymphoma activity declined (or disappeared) and where have these changes occurred?  We should have the results during my upcoming August 14th 4-night hospital admission.  I am clearly eager to see the results.

A Sense of Success to Start the Day! (and THEN another ER visit)

Tuesday - April 7, 2012

I conquered yesterday's late night wake-up and have returned to a more-rested, more-manageable, more-familiar, early morning start!  I feel great!   Little large-muscle fatigue, no lower-back twinges, and perhaps a slight decrease in the finger neuropathy that has been a constant presence since my first round of odd-round Hyper CVAD (wow!  That's a nice surprise!).  Could this week be officially deemed a "good" week?

Joe, Jonathan, and I continued a pattern of restaurant dining with a dinner at Second Street Bistro that included some great draft beer samplers.  I have medical go-ahead to enjoy some wine and beer (yay!) and must confess to being happy about returning to the occasional mealtime pairings. Now if Joe and I could only track down our corkscrew, I could enjoy that great bottle of Chardonnay I have chilling  :)

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Well, we are all home and healthy now but what another rollercoaster hospital interlude this morning!  Our 4th trip to our local Sentara Hospital ER this summer!  Enough!  Good health all around for the Ammiratis, please!  No more avulsions, potassium issues, infections, or fainting spells / seizures.

Today was Jonathan's turn in the health spotlight.  Our routine (but urgent to me) sick visit to determine why Jonathan has dropped 35 pounds off his already slender frame resulted in his blacking out during an empty-stomach blood draw with some shaking that the phlebotomist thought might be a seizure.  Coupled with a low pulse rate, the doctor sent him downstairs to the ER where we spent 4 hours before getting the all-clear.  I am tremendously relieved that a full EKG and long-term monitoring did not surface any issues that would corroborate a seizure.  The ER physician diagnosed vasovagal syncope but advised that Jonathan have an EEG when he returns to the doctor's on Thursday for consultation about his blood work and next steps to discover the cause of his dramatic weight drop.  With a clean EEG, the word "seizure" will be purged from Jonathan's medical record.  Jonathan was a hungry but cooperative patient; it was a long morning!

Moonlight Chores (and Lunch with Jonathan!)

Monday - August 6, 2012

So when the moonlight is streaming brightly through the living room windows as I bite the bullet and come downstairs, it signals my earliest steroids-induced rise-time yet: 1:40 a.m.  I was NOT pleased to be up so early.  What happened?  No naps yesterday and a 9:40 bedtime crash are obvious culprits to be avoided in the future.  I will also move my steroids earlier in the day.  Tomorrow's goal?  Back to my 4 a.m. normal wake-up would be fine  :)   On the upside, just now I was able to take advantage of this found time in the lovely moonlight with a strong surge of physical energy.  Mini-chores that eluded me during the sunshine somehow got done in these wee hours so I am feeling some sense of accomplishment.  Laundry, dishes, garbage, restoring the living room to its pre-back spasms state ... small steps.

Today's bloodwork check at Dalton will bring a special treat;  Jonathan will pick me up in Richmond and drive me back to Williamsburg.  After dropping me at VCU, Joe can get back to his regular work schedule and depend on Jonathan for the return trip!  What a welcome surprise!  Jonathan has a short interlude between his month of Orientation Leader work in Blacksburg followed by his volunteering at the ATP tennis tournament in DC and his upcoming obligations at his fraternity and Hokie Camp at Virginia Tech.  We are lucky to claim as much or as little of Jonathan's time as possible and I am particularly happy to see him at home rather than during a hospital week.  Home time is always more relaxed and offers more options for everyone.

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Released without transfusions of any kind!  Hip, hip hooray for a 4.4 white blood cell count!  It rescued me from a platelet infusion that was exactly the same as Friday's number (28).  Jonathan arrived (!) and drove me back to Arlington where we celebrated with a DoG Street Pub lunch before returning home to rest and Olympic Live Streaming (Track and Field).  I am dragging with fatigue and will certainly go down for a quick nap in order to try to re-set my evening sleep pattern.  Here's hoping!