A Sunny Sunday Hanging with the Boys

Sunday - September 30, 2012

Thank you Peter Chang

Jonathan's back - what an absolute delight!  This guy is on an early schedule these days, arriving back from Arlington before 10 a.m. and planning to stay until tonight (if the Redskins lose) or tomorrow (if the Redskins win)  :)

It's a hangout day with football, Ryder Cup, homework, and sewing but first we checked out the new Chinese restaurant in town.  Joe and I have been a wee bit starved for authentic Chinese in Williamsburg and finally have a fresh, flavorful, Sichuan option in the newly opened Peter Chang restaurant downtown.  Apparently the rockstar-status Peter Chang has flown his line chefs in from Chengdu and it shows on the plates.  No gloppy msg-laden sauces with overcooked meat but tender, spicy, true-to-form Chinese fare.  Hallelujah!

I finished my disability application this morning and will be mailing off the supporting documentation tomorrow.  Disabled.  Not a word that I would have conceived of a year ago and now it seems completely appropriate.  Wow.  Can't believe it.  I am so fortunate to be in a partnership and a position where this word does not confer huge hardship.  I remain housed, fed, warm, and loved.  So I am "disabled" in terms of work but not in terms of life as a whole.  That is indeed a blessing.

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Redskins' notch a win in the last seconds  ... so Jonathan is staying overnight  :)

Dreaming of a Daytrip + A Rock Spring Rendezvous

Saturday - September 29, 2012

Why set an alarm on a Saturday morning?  Well, I was hoping to catch Jonathan before he headed north to FedEx Field for this afternoon's Virginia Tech game but ... no luck!  Our committed Hokie was up and away before 7.  I feel so fortunate that we got to see him for some found time in the midst of his busier-than-ever semester.  Is there any possible way that Joe and I could make it to Blacksburg before my BMT sequestration begins?  This next round of high-dose methotrexate is not supposed to devastate my blood levels as Hyper CVAD did.  Might we manage a daytrip in the next few weekends?  This goal might be pie-in-the-sky but why not aim high?  I would love to be able to visit Jonathan! Every parenting instinct in my body yearns to get to VT but the reality of neutropenia intrudes.  Perhaps my blood levels will stay above physician-sanctioned thresholds.  Blacksburg in the autumn.  Jonathan's home turf.  I'm feeling lucky.

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Rock Spring memories of the Ensigns in one of my ABC Yearbooks

My day at the sewing machine was spelled by a fabulous rendezvous with an old Rock Spring friend whose connection goes back to when Jonathan was a Dinosaur and who later became my touchstone and immediate contact when I was first hired as RSCP director.  Lisa was here for W&M's Family Weekend and we shared salads, conversation. and smiles at the Crust.  Oh how time flies!  Lisa and I might essentially look our lovely, familiar best (without hair in my case) but those cheery youngsters from the RSCP years?  They are now lanky, competent, and engaging young adults who are incredible company!  What a happy outing out in the world!  Thanks to Lisa, Aleeya, and Shayne for the company and the visit!

Accepting Changes

Friday - September 28, 2012

Peasant Painting detail:  Happy around the house  :)

Am I becoming more of a homemaker now that I am not working or volunteering outside of the house?  Hmmm.... Perhaps so....  As evidence, I confess that I am inordinately pleased with having achieved a rare home-focused standard:  I have "pulled a Thelma" - the systematic and immediate stripping of bedding and remaking of beds in preparation for the next guests.  This high standard has hovered in my mind for decades, nicknamed for a woman I have never in fact met but who is a dear friend of my mother-in-law, Maureen.  Maureen once mentioned in passing Thelma's quick-as-a-flash post-visitor routine and ever since I have always approached this task with Thelma firmly in mind.  And now, I have indeed successfully pulled the fastest Thelma ever following Megan's departure.  We're ready for her to return!

In another clear marker of my change in status, I am actualizing medical suggestions / comments and processing my disability claim.  After all, I am simply unable to work.  I guess I am truly "disabled" and will be drawing down my Social Security account in acknowledgement of this hard-to-face fact.  As the nurse practitioner mentioned in Baltimore, with the BMT I will be "disabled" in every sense of the word. Not only will I be unable to work, I'll be unable to cook, clean, do laundry, be in crowds etc.  I am accepting the inevitable, submitting the forms, and thinking that the funds might underwrite the rents for our Richmond apartment and then the New Kent house.  It is my chance to contribute and help out.

But, it's somewhat a question of identity, isn't it?  When was the last time that I was without a community role?  An identifiable responsibility?  A paycheck?  Working back through the years and roles -- mom (!), PTA volunteer in so many schools, preschool director, teacher, student, USDOC and then management consultant employee -- I think the last time I was without an actual independent role was when Joe and I moved to Beijing in 1987 and I had a two month interlude when I was not working.  As Joe will corroborate, I was as mad as a wet hen.  When I finally started my teaching job, I was on cloud nine!  WAIT!  Could it be that those two months of unfocused unemployment in autumnal Beijing might have been the only time in my entire life when I did not have an outward purpose and a clear role.  Wow - I've been busy  :) 

"A most terribly tidy particular little mouse, always sweeping and dusting"

So a reality check on the homemaker status: while I may have happily reached Thelma's standard, I once explained to both Megan and Jonathan that I am not and do not aspire to be Mrs. Tittlemouse.  I aim for "tidy" but not BMT-worthy clean.  We will be employing a deep-cleaning service to ready my various abodes for after my BMT.  Instead, these days I am focusing on purging and organizing in preparation for the many months that I will be out of the house for my bone marrow transplant.  A worthy project and a specific role?  Sure, why not!

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Jonathan's here for a day!  He must have left Blacksburg at the crack of dawn because he moseyed on in here around 11 :)   After our customary pilgrimage to Jonathan's favorite Williamsburg restaurant (Anna's), we are taking it easy (surprise!) and enjoying the afternoon.

How to Combat the "Empty-House Blues"

Thursday - September 27, 2012

Countering the empty-house blues is easier when you are fully aware that your children are HAPPY in their homes, satisfied and content with their life choices, and surrounded by supportive and caring communities.  Modern (and daily) communication also helps immensely!  When Joe and I were raising the kids in Asia, a telephone call with family in the States was a rare treat.  While we exchanged letters, we were effectively disconnected from the daily rhythms and sharing of the lives of my father and other loved ones.  Now, Jonathan and Megan are in touch through multiple media, the distance between us shrinks, and the empty-house blues dissipate as messages and photos fly back and forth.  Finally, this crisp and lovely autumn morning is reminiscent of another beautiful fall day 26 years ago in Connecticut when Joe and I were married.  It's a day for appreciative reflection about my wonderful family (as well as a day for chores and a long-awaited dental visit ...).

In the Massey Cancer Center's "Healing Garden"

Yesterday's consultation with my oncologist provided some clarification and - more importantly after these few days of dogpaddling in survival rate data - a high degree of calm.  Megan and I agree that Dr. Perkins' overall vibe is very positive.  He is upbeat about my response to the Hyper CVAD protocol, the benefits of allogeneic over autologous transplant, and the real possibility of 1 of the 3 potential bone marrow donors actually coming through.  Last week's MRI was great.  It still shows some scarring / healing / activity behind my left orbit but Dr. Perkins stated that this activity will disappear with time as this area continues to repair itself.  As for upcoming hospitalizations, next week is the first of two planned high-dose methotrexate infusions targeting any lymphoma in my central nervous system and requiring 4-5 days of in-hospital treatment.  Hurrah!  I feel the map of the garden paths has been unfolded!  If a BMT comes through before the second high-dose methotrexate infusion then I will forgo that second treatment and move right into transplant mode.  One wrench in the near term:  my platelets remain very low (24) and need to come up (to 35) before I can be admitted next Tuesday.  On Monday, I return to Dalton for my pre-admission routine:  a Rituxan infusion this time but NOT intrathecal chemo - bravo for no lumbar puncture!  My Monday platelet levels will determine whether Tuesday's hospital admission is still a go!

Being with the Children Means Everything

Wednesday - September 26, 2012

Megan and I are soon headed west up I-64 for a blood draw and to meet with my oncologist.  Given last Thursday's improving (just-scraping-by) platelet levels and my increased energy, I highly doubt that I will need any transfusions (famous last words?) .... I envision a quick in and out of the lab and then a full discussion with Dr. Perkins.  Last week's MRI results should certainly be in and we're planning on trying to draw out his vision of any possible garden paths .... Are there any more hospitalizations planned after next week?  What if my BMT is not ready to go within the next month?  And just for the record - again - what are his numbers on relapse rates without BMT? with autologous BMT?  with allogeneic BMT?  

Celebrating Megan's new term (at Fat Canary)

And then we're back east down the interstate to the airport - oh, I am not keen on airport farewells.  Megan returns to California late this afternoon after a GIFT of a visit.  Words fail me here - in writing.  Words escape me - in person - when cuddling, hugging, and holding the children.  I suppose I have always been a bit of a soppy, emotional, tactile mom -- cuddling up my kids, rubbing backs, stroking hair, expressing emotions, expressing that same love and esteem again and again .... Being with Megan and Jonathan has always been a treasure.  I truly enjoy my children and, now with my cancer, I am so appreciative of their constant connection, their brainstorming and bolstering, their presence, their love....  Jonathan and Megan are the most remarkable and nurturing companions and supports.  Jonathan is coming home this weekend.  Megan has given us ten days in the midst of her work and studies.  I have no words - just overwhelming feelings.

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A terrific trip to Dalton:  no bags hung (by the slimmest of blood level margins), a long and satisfying consultation with Dr. Perkins, and then refreshments in the healing garden (as spied by my eagle-eyed Megan).  We then grabbed delicious burgers at Station 2, a Shockoe Bottom restaurant where Joe has sourced two great dinners during my hospitalizations.  This area is in the running for the apartment rental that would immediately follow my BMT and it was good to lay eyes on it rather than just looking online.  Lots of brand new condos within a stone's throw of the hospital ....  Possibilities ....

Hanging with my Megan

Billiard light - slipcovered!

Tuesday - September 25, 2012

How great to be HOME and to be in a welcome interlude with nothing medical on the agenda  - that was yesterday and is tomorrow.  Today was spent finishing up loose ends before Megan's departure tomorrow afternoon back to Davis.  Sewing, packing up media mail, and some serious Tudor-era movie watching all made the cut.  We also managed a marvelous walk with the hounds all the way down to the dock on the York River.  This outing used to be a common daily treat.  I am absolutely intoxicated by the wide glassy expanse of the river and the complete solitude.  Now, it is a rare and precious occurrence.  How lucky I was to have the oomph to enjoy it with Megan in the late afternoon sunshine!  Fabulous!

Second Opinion: MUCH to think about ...

Monday - September 24, 2012

Today is the second opinion on the Bone Marrow Transplant:  autologous or allogeneic, that's the queston ....  Megan, Joe, and I are taking a quick daytrip up to Baltimore.  I am hoping that this different perspective and our subsequent discussion will give me more comfort and peace in determining - if given a choice - which route to take.

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Another 11.5 hour medical day with Joe ably driving us roundtrip to Baltimore (as well as finding us a fabulous Indian buffet lunch)...  It was a long day which has left us all with much to contemplate.  No surprises per se -- simply discussion, clarification, and vetting of options.  Our meeting was very thorough:  first with the nurse practitioner and then the transplant surgeon/ specialist.  All together, we were at Greenebaum for 3.5 hours.  I felt that my case was completely reviewed and considered and that the physician was attentive to my concerns and questions.  I was very impressed and reassured by him and the manner in which he approached our consultation.

All that being said, there is no getting around the fact that my situation is quite serious.  In the immediacy of my chemo treatments, I think I often push away the fact that this lymphoma is aggressive and was widely dispersed before it was finally diagnosed in May.  These bone marrow transplant consultations require me to face the hard data squarely.  A full day of reading, listening, and discussing mortality numbers, relapse probabilities, and survival rates is difficult but absolutely necessary to make an informed decision which gives me the best long-term outcome.

While I am still digesting the details of the meeting, our consensus is that we will pursue an allogeneic (third party donor) BMT.  An autologous BMT carries a high probability of relapse and salvage therapies are more problematic given the high-intensity of my current Hyper-CVAD protocol.  Essentially, we have played our strongest cards with this initial chemo and these drugs will have limited efficacy in case of relapse.  We have used the best tools on the chemo shelf and need to knock out any possible remaining lymphoma with an allogeneic BMT while I am in this current period of "complete response." 

More later as I absorb the specifics but it was a highly worthwhile trip, a nurturing consultation, and much food for thought is now addling my brain.

In a Normal Rhythm

Sunday - September 23, 2012

Our local wild turkey clan - always a thrill and perhaps a good omen

Another brisk, bright autumn morning with a satisfying to-do list stretching ahead of me.  I was fortunate to launch the day by meeting Gina for breakfast downtown and got a vicarious charge from all of her work and fun in launching her second year of teaching!  Wonderful conversation and so terrific to be out and about -- in the world!  In my new favorite animal encounter, I was waylaid on route to the gate by the wild turkey family blithely roaming the road.  They seem oblivious to cars yet their numbers remain intact at a dozen plus (how long can this survival last?) and I always get a charge out of them.  I am certainly bolstered by the natural environment of our neighborhood - eagles, osprey, heron, foxes, groundhogs, deer, and now turkeys.  It has helped get me through the isolation of these last four months.

And today's normal rhythm?  Sewing, cooking, NFL, and prepping for tomorrow's Bone Marrow Transplant second opinion ...  It seems like a normal day  - except for that last item  :)  And best of all, Megan will be back from Blacksburg this evening!

Returning to Form

Saturday - September 22, 2012

Eleven hours of deep, sweet sleep have eradicated Thursday's MRI-induced headache and may have injected some pep in my legs.  Waking up today was one of those wonderful moments where I emerged slowly from a nurturing dream (focused on Matoaka and Rock Spring - I DO enjoy my worklife), became aware of the glorious day awaiting discovery (signaled by cool breezes, birdsong, and the soft presence of snoozing hounds), and realize that my loved ones are healthy and happy and that life is very, very good.... 

This new era of low-platelet bruising is indeed eye-catching and impossible to ignore.  While I'm still shocked by the purple scarring of my May surgeries, these new large black blots sometimes hijack my attention and I think:  "Wow, what a complete and total mess!"  With these visible marks, I find it difficult to ignore the fact that I am in the midst of a health battle.  Each of my elbows is marked by green-tinted blood draws, my left hand is blue from Monday's IV, and my inner thighs are an archipelago of purple atolls stretching from knee to groin.  Four and a half months into this journey, bruising seems to have become the norm.  C'mon platelets, put out!  Wipe out these symbols of illness and let's press on with healing ....

Our peaceful view from the new house

NOTE:  After a week of consideration and debate, we are NOT moving forward with the waterview house.  I am pleased to return my (fantasy) renovation energies to full focus on our Kingsmill house :)  Who knows when we will actually be moving into this space but we are preparing our changes so we will be ready to roll when the time comes! 

Hometime

Friday - September 21, 2012

Well, I am certainly feeling some effects of yesterday's epic outing.  Yes it was an emotional and restorative high but I'm simply not used to being on the go and on my feet for so long.  My life has not been that active these many months and I am recuperating!  Somehow, this realization comes as a bit of a surprise but really what have I done that has been physical since my May 2 lymph node surgery (and inadvertent complicating bladder nick)?  My energies have been necessarily elsewhere - just processing the chemo, regathering strength, and trying to sleep!

In happy family news, Megan was fortunate enough to get a ride with a friend of Jonathan's roommate and has just left for a weekend in Blacksburg.  I LOVE the idea that the kids are together for some fun, football, and even dodgeball!  It would have been such a shame if Megan and Jonathan had not intersected during this east coast visit.  As for me, today, I am cleaning up (various household debris fields), finishing up (sewing projects!), reading up (for my Coursera class), and resting up  -- no choice in this area because (while it's hard to admit) I am truly tired!

Downtime in Richmond? YES! Carytown!

Thursday - September 20, 2012

Well, today is that oddball schedule day where I have consolidated a daytime Dalton Clinic blood draw with an 8 pm head and orbit MRI.  Non-hospital time is such a precious commodity that it's a bit of a gamble / head game in trying to figure out exactly how Megan and I are going to arrange our time for the afternoon and evening to minimize our time in and around VCU.  The issue, of course, is whether or not "bags will be hung" after my blood results are in.  I am feeling terrific but my bruising remains deep and dramatic, perhaps signifying that my platelets remain low and that a bag of golden liquid awaits me.  If so, then we have to allow at least 4 hours for the visit.  AND if I need red blood cells then an additional 2 hours are needed.  So how do we best consolidate our Richmond time when do we arrive at Dalton for the blood draw?  With the clinic closing between 5 and 6, should we arrive at noon to allow enough time in case of the worst case scenario?  Lord knows that I do NOT want to hear my RNs say that I need transfusions, time doesn't allow it, and please come back on Friday ("NO!") ....  So, I think in the end that Megan and I will head up by noon to allow time for any potential bags, perhaps explore Cary Town and the Virginia Museum of Fine Arts, introduce Megan to Stuzzi (why not?), and take the opportunity to embrace some downtime in Richmond.  I hope that we are back in Williamsburg by 10 p.m.

Yesterday brought some news about what comes next in bridging this end of my Hyper-CVAD chemotherapy and my upcoming Bone Marrow Transplant! With my successful pressing for specifics from my medical team, I have learned that my 11th hospitalization is scheduled for Oct. 1 or 2. This higher-dosage / higher-intensity methotrexate infusion will address my "probable" (possible?) central nervous system involvement of my lymphoma and will once again require me to be closely monitored in-hospital until my blood's methotrextate level is untraceable. Will the higher dose require more than the usual 4 days to purge? Will I receive Rituxan and methotrexate via lumbar puncture the day prior to my hospital admission?  Next Wednesday's meeting with my oncologist will firm up the details.

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Hanging out and waiting at Urban Farmhouse

Well, our Dalton trip was the FASTEST ever!  Megan and I were in and out in just one hour and ten minutes!  Amazing!  Although my platelet level is 20, a threshold where I am usually transfused, I was good to go because all of my levels are on the rise and - ta da!- I am no longer neutropenic!  We got the news and moved quickly and directly to valet parking and out into the autumn sunshine ....

Only SEVEN hours to kill until the MRI but we executed our plan:  lunch at Stuzzi and hours of wandering and browsing in Carytown (we bailed on the museum).  I don't think I have been on my feet that much since my lymph node surgery on May 2.  We wound down the last few hours before the MRI just below the hospital in Shockoe Slip's Urban Farmhouse enjoying their doors thrown wide open to the air and the view of black birds wheeling overhead.  Perhaps it felt a bit like enforced exile waiting between these medical appointments but it was truly a very relaxing, lovely bright-autumn day with Megan.  In the end, we got home just before 11:00, almost 12 hours after our departure.  What a haul.

Lymphoma Sometimes Just Fades from Consciousness

Wednesday - September 19, 2012

Changing this UP!

Full immersion in projects is a true blessing, especially these days.  Yesterday at the sewing machine, I had a long interval where I completely forgot about stage 4 cancer, chemotherapy side effects, and the ongoing debate about my upcoming Bone Marrow Transplant.  I was simply lost in focus - working on "slipcovering" Megan's new room's billiard light with Chinese peasant cloth.  Megan sat alongside me reversing / creating ribbon strips while I finished off seams and debated how much lining was necessary to keep the lettering from bleeding through and we listened / watched SYTYCD and Survivor clips on the computer.  Normalcy.  Focus.  Lack of intrusion and limitation from finger neuropathy.  Fun with our remarkable girl!

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What a homey, happy day alongside Megan and some still-recovering hounds (sleepy and hungry).   The sewing machine grounded the day with me finishing up Megan's closet curtains and getting oh-so-close on this billiard light project.  Midday, Megan and I took a break to run a few errands on DoG Street and grab lunch at Mooyah and later prepped a pasta dinner which we ate on the deck in the cool air under our glorious pines.  I do indeed feel that I am on some sort of emotional holiday!

And, yes, enjoying the "Survivor" premier alongside Megan was a real treat!

What a Productive Start!

Tuesday - September 18, 2012

A freshening, crisp breeze awoke me from a restorative 6-hour snooze!  Fabulous way to start the day!  While I remain "profoundly neutropenic" and self-contained in a modified level of house quarantine, I am functional and have a bit more physical competence this morning.  Megan and I have already ticked some chores off today's list.  Most importantly, we brought the hounds in for their annual dental cleaning - an event that causes all of us a high degree of stress due to the sedation required.  Leaving them at the vet is always a sad moment and Megan and I redirected our anxiety with a Blue Talon breakfast (a wonderful throwback to many such outings in 2009-2010 during Megan's senior year at William and Mary and before I began full time graduate studies at William and Mary).  Now, I am in the midst of laundry, kitchen chores, and our gonzo sewing projects for Megan's new room.  A near-normal day?  Could be!

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The hounds are home - healthy but totally freaked out!  It's been a productive and warm day working and loving alongside Megan!  What a gift to have her home!

Steroids = Another 4 hours Sleep

Monday - September 17, 2012

Well, I tried to grab some more sleep after a 3 a.m. wake-up but after almost an hour I gave up, came downstairs, and launched the day.  Megan and I are headed to VCU's Dalton Clinic as early as possible in order to get the jump on my labwork.  In case my blood draw indicates that "bags must be hung," I'll be early in line for the blood bank request, typing, and ultimate delivery of those precious platelets and red blood cells.  As a frequent consumer of blood products over these last 4 months, THANK YOU to all of you who donate!  I recall Kim organizing blood drives thirty years ago in high school!  Every donation is appreciated and needed.

Today also brings another fun and productive sewing project - creating a slipcover for a "billiard lamp" featured in Megan's new room.  We've already mocked up a form cut to size, selected fabric, and are ready to start seaming  :)  My neuropathy continues to be manageable enough to allow needlework!

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And they're hanging bags!  Both platelets and red blood cells are on order.  The wait is made much more manageable being with Megan - even though she just bested me in Scrabble!  Rematch to come!  Hoping to be out by 2 p.m. But maybe I am dreaming . . .

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Yes, I was dreaming!  We were out at 3:30 and are now home.  Time to tackle some sewing before dinner  :)

Stirred up on Steroids (?) + HAPPY Megan's home!

Sunday - September 16, 2012

Although my 3:30 a.m. wake-up (after only 4 hours sleep) can certainly be attributed to the effect of the start of my four-day course of dexamethasone, my mind is racing with yesterday's surprises and subsequent energy surges and may be the reason I am up and ready to go!

First, poor Megan has had a summer of travel challenges and did not make it home last night.  Her plane turned back to Sacramento to check out a mechanical issue and, with a four hour delay, she missed her connection.  The silver lining is that she spent last night with a good friend rather than in the airline-voucher hotel.  Megan will fly in (provided no future glitches) today before noon - yeah!

Second, a fever put me on edge for most of the day,  Ugh.  When it climbed to 100.2, I started to lose it thinking that hospitalization #11 loomed and that I would lose precious time with Megan and be sequestered during these glorious autumn days.  Joe calmed me down reminding me that I had successfully fought off a 100.2 temp in the past (but only once, I thought).  I hydrated like crazy, forced down some food, exerted no energy, and waited.  By mid-evening, the thermometer showed slightly reduced readings and I finally felt safe enough to crash in bed just before midnight.  Victory ... but my adrenalin had gone through the roof and - all in all - it was a pretty rough afternoon and evening, so much stress ....

View of the lake and Queens Creek marsh... skip the interior then ...

,,, the view of the marina and Queens Creek access to the York 

Third, Joe and I may - or may NOT - have lost our minds.  Joe has continued to keep his eye on waterfront properties since we bought our cheery, sun-filled, LOVELY, perfect-for-us home in the Kingsmill area of Williamsburg.  We are currently renting out this new house while we live in military housing close to Joe's job.  This week, Joe found a new listing in a previously-explored area with remarkably expansive water views of Queens Lake, Queens Creek, and a direct line of site out to the York River.  Out of the 3 dozen plus (?) waterfront houses and lots that we have seen over the last three years, we agree that this house has the best waterview, visible from every room in the home.  Hard to resist.  It also checks our other boxes in terms of one-floor living, mature trees, little lawn, and being completely sun-drenched and not-too-big.  We toured it yesterday morning and yes, it is a total and complete gut job but that in and of itself also holds strong appeal.  What to do?  We absolutely love our ready-to-move-into Kingsmill house with its terrific neighborhood, ultimate privacy, and short walk to the James River BUT... those multiple Queens Lake water views ... the sunny interiors and good bones of the gut job ... the thrill of the personalization ... our minds are racing!  I awoke at 3:30 thinking of interior ceiling lines and (of course) skylights and gables to bring in even more light.  Hmmm ....  What do you do when you are in the midst of cancer treatment?  Take on a full renovation?

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Unbelievably, I am still functional and somewhat alert as the sun sets.  Megan arrived in Richmond before noon and her cheery presence is certainly a factor in keeping me awake today thus preserving hope that I can achieve a full(er) night's sleep.  We celebrated Megan's return to Williamsburg with a customary visit to (the newly remodeled and mod) Nawab before heading home to football.  My physical energy seems to have picked up a bit, the bellweather being a walk with the hounds around the neighborhood circle.  I managed without great elevation of pulse and fear that my legs would go out so I am highly encouraged.  On the temperature-battle front, I am having a good day!  No repeat of yesterday's scares - yet.  Megan is visiting during a "good week" perhaps?  Oh yes!

Neutropenic Precautions

Saturday - September 15, 2012

Time to rest up

Although I am all tanked up with yesterday's 2 units of platelets and 1 unit of red blood cells, I am still officially "profoundly neutropenic" and susceptible to infections.  Ah, what's a girl to do ....  As one of my wonderful RNs said, this chemo protocol "devastates blood levels."  But with time, pricey Neulasta, and the resilience of my own poor, beleaguered bone marrow, my levels will come up eventually.  While I am in this neutropenic nadir, I am steering as clear as can be of possible sources of infection and being mindful of everything I touch.  This safe, non-infectious world is much more confined than desired yet it's necessary to avoid hospitalization.  And with Megan coming home for 11 days late tonight, I do NOT want to be back in the hospital!

Solo Dalton Trip #1

Friday - September 14, 2012

Vincristine must be infused through my port

Scheduling issues?  An assertion of independence?  A sense of adventure?  Somehow, circumstances are all coming together and, for the first time since March, I am driving myself in to Dalton today for a quick (five-minute) vincristine infusion and ... labs.  It's a bit of a risk.  I surfaced some deep black bruises on my inner thigh last night (origin unknown) which may signal low platelets in addition to my certainly-low white blood count as I approach my nadir.  So if they need to hang a bag of platelets or red blood cells, I will be pre-treated with gonzo amounts of Benadryl which might knock me out.  Our plan is for me to wait out any fatigue before I hit the road.  In a gesture of confidence and positivity, I am NOT bringing a go-bag in case of hospital admission because my temperature is perfect and my pulse is better under control.  (Gosh, having written that sentence, I am going to have to bring in pajamas and toiletries.  Can't risk the gown!)  It's only a 50-minute drive to VCU but we are planning like it's a cross-country excursion. 

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In the end, I forgot the go-bag but I remain optimistic.  Two and a half hours into Dalton and I have had my port accessed, managed blood return after major intervention, and finally had my blood draw through the trusty veins in my arm.  Platelets and red blood are now in the pipeline for the afternoon following incredibly low blood counts. Yup, they are hanging bags.   Ah, well .... I have made an expedition to gather food and am hopeful that my solid vitals will bolster me enough that I will NOT have to be admitted!  Here's hoping!

Waiting to Perk Up

Thursday - September 14, 2012

Dated but functional does the trick!

Oh, I know that it is WAY too early but I am still hoping that Monday's precious Neulasta shot kicks in and invigorates me sooner rather than later.  In the meantime, I am shepherding my energies and avoiding the stairs until my pulse rate declines and I don't risk shortness of breath!  Sewing is a centering and calming activity for me and yesterday I spent many productive hours tackling projects at the sewing machine, enjoying open windows, and listening to NPR and BBC.  The neuropathy in my fingers has dissipated enough that I am able to be functional on the machine.  Today I am tackling some handwork and (drum roll please!) bringing Baxter to an unavoidable trip to the vet (heartworm check before next week's dental cleaning).  I have some strong concerns about leaving the house and interacting with places and people in my "am I neutropenic?" state.  I will take precautions, be swift, and think happy non-infectious thoughts!

So proud of our remarkable boy!

Brother Spotlight: Jonathan Ammirati ‘13

From September 2012 newsletter of Alpha Phi Chapter of Beta Theta Pi

"Here at Alpha Phi, we have many promising undergraduate brothers, but few can say they have had experiences similar to those of Jonathan Ammirati ’13 (#695).  A senior majoring in communications, political science, and statistics, Jonathan has seized every opportunity Virginia Tech has presented. Jonathan believes the truest policy in life is, “In life and all experiences, you get what you put into it. In all of my efforts I’ve put everything I can offer into Beta Theta Pi, my academics, and the community.”

Joining Beta as a freshman in the fall semester of his freshman year, Jonathan learned that through Ut Prosim and a motivation for leadership, anything is possible. Having served as a Student Alumni Associate, a Low-Tech, a Hokie Ambassador, Hokie Camp Counselor, an Orientation Leader, a member of the Order of Omega, the President of the Statistics Club of Virginia Tech, and Beta’s Leadership Chairman and House Manager, Jonathan Ammirati is one of the most accomplished and distinguished brothers of Alpha Phi in recent memory.

Boasting a 3.9 overall GPA between his three majors, Jonathan is one of the most balanced brothers as well. As he has seen the chapter improve over his years as a brother, Jonathan stated the biggest improvements as, “The brothers of this chapter have taken many more leadership roles on campus and they have established both names for themselves and the fraternity… They have a certain confidence about them… The sky is the limit when it comes to [Beta at Virginia Tech].” Undoubtedly he will be remembered as one of this chapter’s most renowned brothers both for his academic rigor and for his commitment to Virginia Tech’s motto, Ut Prosim, “That I May Serve”."