Commemoration, not Celebration

Tuesday - April 30, 2013

We Ammiratis have a division of opinion that happens to break down by gender lines....  Joe and Jonathan think it's not entirely understandable to mark diagnosis and procedure dates.  However Megan and I are noting the passage of time as we reach some truly monumental milestones.  As someone who has always liked to count down, count back, and count forward (perhaps) as a means to anchor myself relative to experiences past and present, I view these dates as "red letter days," moments in time that mark a transition, proverbial forks-in-the-road that highlight life shifts. 

One year ago today was nominally the last (semi) normal day I enjoyed before entering a medical vortex. I view that Monday 4/30/12 as a (semi) normal day because it turned out to be my last day of a regular schedule at school.   I use the (semi) designation because at that point I had been ploughing through a continuous migraine that had started on Dec. 28, double vision that had begun on Jan. 12, and the bizarro reality of wearing an eyepatch in order to function for three months.  (Semi) also seems appropriate since I had already absorbed mid-April's pronouncement of the likelihood of cancer.  What an odd situation ... but it had become my normal and I did NOT want to cede it to memory.

So counting back to last year I am remembering - commemorating - one year ago today, a spring Monday in Williamsburg when life still had some normal rhythm.  I lesson planned, enjoyed morning circle and daylong instruction with my students, consulted and shared with colleagues throughout the day, and escorted my first- graders out to their buses in the late afternoon with the thought that these small moments would be repeated at the end of that week, in the following week, and throughout the remainder of the school year.  I could imagine that soon I might be clear, cured of whatever ailed me, and returned to a standard definition of "normal" rhythm at home and at school.  Instead, that was the last day before I transitioned into full fledged medical mode.  Pre-op on May 1.  Biopsy and oops-said-the-surgeon-is-that-a-bladder-nick on May 2.  Laid up with bags hanging from me until the cancer diagnosis came in on May 11.  Intrathecal chemo on May 14.  Hospitalization on May 16.  At that point, I was fully down the medical fork in the road.  I never returned to the classroom to teach.  On May 14, I went in to say goodbye to my colleagues, to start the day with my class, and to introduce my students to their amazing and fabulous (so lucky to have her!!) substitute.  One month later, I returned (SO weak, without hair, and with Carolyn helping me) to say goodbye; most of the children and adults did not recognize me.

But one year ago today on April 30, I could have gone either way. I was still in a (semi) normal routine.  That's surely worth some commemoration, yes?

Focusing and Counting Down

Saturday - April 27, 2013

Joe left this morning for 12 days of work in San Francisco; add some visits with Megan and throw in a little house hunting and he is sure to be a busy man.  My time alone coincides with a shift in "the countdown move" from double digits to single digits (only 9 weeks to go until we head west) so I am focusing on preparations by continuing to weed out and cut back.  This solitary interlude comes along at a time when I am also counting down to a happy event (Jonathan's graduation!) and a potentially even happier event (another clear no-evidence-of-disease scan report).

See how I tried to ward off the anxiety of cancer news by visualizing a good report?  Does that work for anyone?  Not so much with me.  Joe is talking about a celebratory dinner when we hear excellent news on the 21st.  I can't quite get to that point.  Yes, despite this most recent typical-for-me upper-respiratory distress, I feel absolutely terrific.  No harbingers of lymphoma at all.  No possible symptoms.  It's just that "lurking" word that makes me wary, the lingering distrust I have in this body that so blatantly betrayed me, those moments of slight sweat and overheating that come with the spring and being 51.  Anxiety lurks.  So I keep BUSY!  I keep FOCUSED!

Focused on my last few weeks of work as a math tutor.  Focused on sorting and tossing.  Focused on ridding myself of this wretched cough.  Focused on the sustenance of family and friends.  Focused on the many blessings I enjoy.  Focused on my awesome streak of good luck in this cancer casino.  Focused on the positive.  That's how I hope to avoid the stress of watchful waiting. 

My Idea of "A Perfect Date"

Thursday - April 25, 2013

May 1983 Univ. of Pennsylvania graduation

True, today was perhaps the prototypical example of Miss Congeniality wisdom:  "not too hot, not too cold, all you need is a light jacket."  But the reason it's a perfect date is because it's my father's birthday.  A bittersweet day.  SO many fabulous touchstones and memories keep my father close even 18 years after his death yet ... he is still irrevocably gone.  His absence has resonated even more deeply for me during this illness-that-turned-out-to-be-cancer year.  Today was a gorgeous spring day and (even though I am still coughing with an intensity that threatens to crack ribs) I enjoyed soaking in happy thoughts of my supportive, funny, impish, hard-working, intelligent, loving, and expressive father.  In death, he still helps me remain calm and focus on the positives.

Perspective and Prayers

Tuesday - April 23, 2013

As Joseph predicted, I have truly been laid low by this cough / fever.  While today was my third full day of sleep and hacking, I feel that I may have finally turned the corner (my temperature is evening out) thanks to heeding his (strong) counsel and keeping my movements and activities to a minimum.  My nerves have eased somewhat ... but I will probably remain nervy until I meet with my oncologist on May 21 to review the results of my upcoming May 15 scans.

Very very sad news.  The young man battling Burkitt's Lymphoma passed away on Monday morning.  Along with his parents, family, and friends, he is strongly in our thoughts and prayers.  I will keep with me his ready smile and great laugh in the halls of my former elementary school.  He was - is - a memorable and positive young man. 

+100.4 on the Couch

Sunday - April 21, 2013

A lost day ceded to this cold - or is it the flu?  Sleeping, napping, cuddling with the hounds in the grips of fatigue and coughing.  I have been bumping up against - and sometimes exceeding - the 100.4 temperature mark that signaled an immediate no-questions-asked trip to the ER when I was doing chemo and was deemed neutropenic.  I suppose I have an almost Pavlovian response of panic when I look at the thermometer and that 100.4 number.  Somehow, this fever unnerves me more than my wracking cough.  Just a cold, just the flu, just a fever, just a cough BUT I still have a mini freak out.  Exactly how crummy did I feel?  I canceled on a chance to meet up with dear friends from Arlington.  Yup, shackled to the couch by germs. 

Twenty Hours in Blacksburg!

Saturday - April 20, 2013

Jonathan kept a tight hold on me all night  - so sweet :)

So ... all in all I think I kept my composure as well as could be expected.  Of course, some tears but no torrents.  It is simply devastating to hear family members speak of their losses and how much of their lives have been missed by those loved ones snatched by cancer.  The pain is palpable and deep.  Voids.  Chasms.  Loss, loss, loss.  My heart was full thinking of Mary, Elizabeth, Mark, JeeWon, Michael, Gina, Paula, and all of their circles of family and friends that are praying and aching and missing and yearning ....

Jonathan steadied me both figuratively and literally with a strong arm and firm hugs.  We were part of a huge Relay for Life crowd on the Virginia Tech Drillfield despite a 3 hour delay necessitated by torrential rain. Epic mud pits, treacherous footing, and biting cold added to the atmosphere of resolve and witness.  The testimonials and photo memorials were absorbed in total rapt silence.   The laps were relayed with comradery and community.  An amazing event.

Jonathan's performance with the Low Techs launched just before midnight, reinvigorating the shivering crowd.  Let's just say that he emerged wet, muddy, and in his typical Low Tech skivvies but smiling and happy.  When I fell asleep about an hour later, my feet were still frozen; he must have felt glacially cold all over!

After spazzing out and falling on my butt out of the bunk bed (classic move, Christine), a great Gilly's breakfast, and a lightning stop in Bedford to see the Maxwells and pick up another gorgeous piece of MTMaxwell furniture, I have arrived home committed to nursing my cold and resting up.  As Joseph says, I may have overdone it a bit this week and I am shot.  My take?  I'd totally do it again.  Road trip north to see friends and Great Big Sea?  Check.  Road trip west to see Jonathan, meet more of his great group of friends, and participate in Relay for Life?  Check. It's been a fabulous few days :)  Now, back to bed ....

Can I Maintain Composure? Relay for Life at Virginia Tech

Friday - April 19, 2013

... Mark ... Elizabeth ... JeeWon ... Mary ... Michael ... Gina ... Paula ....

This morning, I am back on the road headed southwest to join Jonathan for Virginia Tech's Relay for Life: 
"At Virginia Tech, our Relay is the largest collegiate event in the nation and has been since 2009. We are setting milestones and will continue to be leaders in this movement until we find a cure." 

Cancer robs so many families of a carefree present as well as the promise of a future, of advanced age, of retirement.  Cancer is a cheat and a horror.  It can steal all that a person is and all that a person hopes to be.  It mugs us and thieves our peace of mind.  In my own small experience, lymphoma has stalked off with my children's sense of security.  We are close.  We are VERY close.  I am simply besotted with these people who are our children.  They are marvels to me and I am so utterly proud.  I simply cannot imagine not being with Jonathan and Megan to see them fall in love, to parent, to come fully into their own beings.  Will we ever again assume that next year is a guarantee?  We did before.  Not anymore.  Cancer has ambushed us and stolen away with that sense of surety.  Maybe calm and peace will eventually displace our current anxiety and disquiet.  But not yet.  Not for a while.

So, we fight back.  In a micro view, I listen to my doctors, research and THINK, remain attuned to my body, and fight like hell whenever the battle is re-engaged.  In a macro view, we talk and advocate and raise money to fund research.  Megan ran and raised almost $1400.  Now Jonathan and I walk to fundraise.  Together.

Will I be able to remain composed as I walk alongside our beautiful boy?  Of course he's all grown up, so capable, so engaged, and yet so completely vulnerable to this wretched lymphoma that is holding our family hostage and invading the lives of so many other families.  How can I not tear up as I see his pain and worry?

"You've Just Got to Say It's Alright"

 Thursday - April 18, 2013

Well, it has not been an "Ordinary Day" (or two days).  I'm back from a highly sustaining and ultra-fun blitz trip up to Arlington / DC!  Months ago in the fall, Catherine suggested that we reprise our Great Big Sea concert-going tradition and I - naturally - hesitated.  Who knew where I would be when 4/17/13 finally rolled around?  Best bet (and hope at the time) was that I would be in the midst of a successful Bone Marrow Transplant at Johns Hopkins, would have avoided the perils of graft versus host disease, and would have rebuilt my immune system enough that I could have risked the germs and crowds to enjoy Goin Up with a classic Great Big Sea kitchen party!

Instead, the red letter day has now come and gone and I am not in the grips of cancer treatment.  Instead, I am blissfully up and about, able to enjoy a sojourn on that familiar Rock Spring bench overlooking the swing set, reminiscing with fabulous friends and delighting in the pure joy that is embodied by toddlers at play (I do love me some preschoolers!).

It was a full and fantastic day  :)
Lunch with Anna, Diane, Rokia, and Eileen!
Martha surprising me outside the orthodontist office (yup, that's another story)!
Meeting Eddie and seeing Nicole!
Walking with Catherine underneath Arlington's blossom-arced streets!
A delicious (and decadent) Gahres meal!
And THEN it was time for the Warner with Catherine, Elizabeth, and friend...!
... Where we ran into the Gibsons!

A truly great show.  Two full sets without a warm-up act, stretching three hours.  It may indeed have rivaled the 2002 concert at the 9:30 Club with Megan, Elizabeth Conlan, and Jonathan in his Canada hockey jersey all up in the balcony overlooking the stage.  As Alan said that epic St. Patrick's Day 11 years ago and again last night, they played "all the hits"  - even some songs from their debut album that I had never before heard live (and that's saying a lot).  I felt buoyed, grateful, happy, and UP!


With my prayers and thoughts on a hospital room in Norfolk, this morning I played Great Big Sea all the way south on 95:

"In this beautiful life, there's always some sorrow.
It's a double-edged knife, but there's always tomorrow.
It's up to you now if you sink or swim, Keep the faith and your ship will come in....
It's just an ordinary day and it's all your state of mind
At the end of the day you've just got to say it's alright."

The Healing Power of Friends

Tuesday - April 16, 2013

Thank goodness for Jeff, Ellen, and Jonathan Katz!  Their weekend visit has kept my head above water, my focus on the blessings of friends, connection, and laughter, and my gratitude expressed in words as well as mind.  I am grateful for spring days, for cuddles with dogs, and for sharing long-loved memories and new discoveries with fine friends.  I am grateful for connection and contact.  Sharing these days with friends did not dissipate my  thoughts and prayers channeled towards Children's Hospital, rather it highlighted the delicacy and richness of comfortable happy connections. Yes, sorrow and sadness might be present but aren't these feelings evidence of human outreach?

Life can be fleeting - a circumstance that may indeed be beyond our control - but we can choose to make life bright with smiles and buoyant with love.
Friends and family make that possible.
... (Small sighthounds can also work some magic) ...

Prayerful Thoughts for a Twelve Year Old

Monday - April 15, 2013

Our family is holding close in thought and prayer a young man who has been valiantly combating Burkitt's Lymphoma (mostly as an inpatient) since last summer.  His cancer has returned and his parents have asked for prayers, specifically the following verses. 

Jeremiah 29:11-14 
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord, “and will bring you back from captivity. I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile."

Cancer (Truly) Sucks ... so What Do We DO ABOUT IT?

Thursday - April 11, 2012

Stuffed cancer plush "toy" (?) courtesy of Giant Microbes

Sometimes I think that I do not adequately or frequently express just how much cancer sucks.  I am not specifically referring to my personal health challenge;  I am enjoying fabulous health, feeling lucky as HELL, and savoring this blessed remission for as long as it might last (and let's hope that it's a long, long time).  No, I am simply expressing my undercurrent of latent hostility towards this scourge disease, my rush of emotion that roars to the surface whenever another family member, friend, acquaintance, colleague, neighbor, compatriot, fellow human is hit with the ton-of-bricks news of that dread diagnosis or learns with a heavy heart that relapse has come to an end, or fights another bout of neutropenia, confronts another hospitalization, realizes that the damn-port-that-has-just-been-taken-out must now be surgically re-implanted. 

Tonight, I am raging for that new case of prostate cancer that has smitten an unsuspecting family, the escalating fatigue that accompanies the chemotherapy working to combat a case of uterine cancer, the infection (and possible tumor) that is delaying a Bone Marrow Transplant for a pre-adolescent with Burkitt's lymphoma, and the recurrence of Hodgkin's Lymphoma that may necessitate a Bone Marrow Transplant.  Yes, my prayers are strong and frequent, my thoughts are pulled to these individuals many many times as I go about my day.

But what else can we do?  Megan and Jonathan are both fundraising and working to advertise bone marrow drives.  My sister Sally and I may run in Richmond in a Be The Match fundraiser IF my mid-May scans are clear.  Next week, I will join Jonathan in Blacksburg for the Virginia Tech Relay for Life event.  But what else?  I think we talk.  Talk about cancer.  Talk about symptoms.  Talk about the chemo.  Talk about infusions and ports and radiation and biopsies and hair loss (it grows back folks, it's NOT the end of the world!) and neuropathy and fatigue.  Take away the stigma.  Help increase awareness.  Help others recognize symptoms EARLY.  Blog.  Share.  Talk.  Communicate.  Open the windows and let the sun shine in and eliminate the shadowy "cancer" whispers.  Use language and community to kick this sucker out the door.

Accuracy Counts

Tuesday - April 9, 2012

That was THEN...

... and this is NOW!

In beginning to retool my e-folio and resume for my upcoming job search, it suddenly occurred to me that I no longer physically resemble the person in the e-folio photos and the photo on this blog profile.  I began to blog as part of my Education Masters and had simply kept the original photo on my profile.  As they say "The proof is in the pudding" and my appearance has altered to the extent that familiar faces do double takes or simply don't recognize me at all.  Not only is my hair significantly shorter but it is also coming back curlier and I am not going to color it.  Hello gray!  Time to reconcile my virtual presence to the happy reality of NOW!

The e-folio photos remain "as is", a reminder of an amazing year of learning and education presided over by my prior incarnation.  BUT the blog profile has been updated.   What's next?  Job applications?  Not yet.  Waiting for another good round of scans and then I'll be off and rarin' to go :)

Inklings of Spring!

Monday - April 8, 2013

While the daffodils have been out for some time, today truly felt like the first day of spring.  The frogs are peeping in the creek in the evenings.  Warm breezes and the scent of earth hold the promise that the trees will soon join the scrub brush in coming into leaf.  This positivity as annual rite, as cemented in the beauty and rhythm of seasonal progression, has served to kick away some of the blues and anxiety that seem to be lurking about in the downtime that arises in my spring break days.  Even the word "lurking" is now inexorably tainted, linked to my lymphoma diagnosis.  After all, it was almost exactly a year ago on April 10, 2012 when Dr. Michael Edmond of VCU's Division of Infectious Diseases took a prolonged and careful look at my blood results, considered my migraine and vision symptoms, and then suggested that "lymphoma might be lurking."  That phrase was the first time that cancer was raised as a possible explanation for my pounding disabilities. The subsequent rollercoaster of hospitalizations, treatments, and exhaustion generally served to stave off most instances of the blues.  However, spring break inactivity and an empty nest have grown my discomfort.  Outings with friends and continuing organization / preparations for our anticipated California move have been generally effective in warding off the blues but these quiet restful days are not necessarily the best thing for someone in a state of health flux.  I am eager to get back into a busier rhythm with work tomorrow and to refocus my mind outward. 

Anyway, the sensory evidence of spring is an absolute gift.  We may not have discussed it frequently but the weight of my diagnosis meant that I certainly had some moments when I wasn't really sure that I would actually see spring.  That's not melodrama or depression - it's just ... realism.  The stage 4 and Bone Marrow Transplant numbers pierce through even the most optimistic nature, giving pause at times, kicking you in the gut, breathless with shock at other times.  Thank God for Johns Hopkins' Dr. Ambinder and his "sit tight" advice.  He transformed my anticipated winter of holing up in a hospital room, praying for a successful bone marrow graft, and avoiding infection into a season of regained strength and precious time with my family.  We are rolling the dice and - so far - we have been successful.  Each clear scan signals a more optimistic outlook.  Slowly but surely .... Sitting tight, watchfully waiting ... and now, it's spring!  We've made it!  The ultimate reward?  Joe and I will both be present to join Jonathan in his college graduation celebration in five and a half weeks.

Fundraising on Both Coasts

Friday - April 5, 2013

Both Megan and Jonathan are organizing / participating in Bone Marrow Registry fundraisers in the next few days.  Bone Marrow Transplant is more common than we think.  I need to amend my recent Facebook comment that in our small circle, the last eight months have seen THREE people who have faced a Bone Marrow transplant. In fact, we know of FOUR people benefiting from the efforts of "Be The Match."  I never found a match from the BMT registry and am rolling the dice that I will remain healthy without a transplant. A close high school friend of Megan's and a student from my Williamsburg elementary school are currently both preparing for transplants to combat their lymphoma. Then Carolyn reminded me that my brother-in-law's aunt is undergoing BMT at the Mayo Clinic.  So that makes four brushes with Bone Marrow Transplantation (that we know about).  Such a huge weight of family pain, time, and crushing anxiety stretching from Virginia to the Rockies.  

Be The Match helps ease this enormous burden not only by registering donors but also by reaching out to families and patients and offering concrete support.  For example, as soon as my marrow was typed and my search was on, this active organization extended itself to me through a phone call with a personal counselor to serve as a resource and contact.  A meaningful and immediate action that helped me at a crucial time.

Jonathan and Megan are channeling their anxious energies to cancer fundraising.  Jonathan is once again working on Virginia Tech's Relay for Life (details to follow!) as well as an upcoming registry drive in Blacksburg and Megan is finishing her fundraising for tomorrow's "Be the Match" fundraiser in San Jose. Thanks to everyone who has joined in these and other efforts to combat blood cancers now and in the future!  Silver linings  :)

Refreshed and Relaxed

Thursday - April 4, 2013

Take equal parts Colorado blue skies and clear air, combine with Alzamora giggles, company, and positive energy, nourish with great food (kudos to Blue Sky Cafe), flavor with happy outings with Carolyn's friends, spice it up with some rousing by-the-rule games of Settlers of Catan, then walk and walk and walk ... in Boulder, at Chatfield, along Bear Creek, and by the cormorant nests in Denver's City Park.  What do you have?  A relaxing, restful, recuperative sojourn that I didn't even realize I craved!  Thank you - once again! - to Carolyn and her family for sharing themselves and giving me a gift of peace and healing - just what I needed!