Halloween! Possibly my FAVORITE Holiday!

Wednesday - October 31, 2012

Because it's child-centered!  Because it brings families and schools and children together ecumenically and with the sole agenda of enjoying each other's inventiveness, marching about a bit, sharing some food, and having fun!  Because it's an occasion for children to knock on unknown, generally-no-go doors and to be welcomed, admired, and given a gift of generosity and food!  Because it's a day to strengthen social skills in approaching people appropriately and safely and to practice great eye contact and verbal manners!  Because it's a day to dress up and - at least in preschool circles - to be as over-the-top as possible! Because it comes at a gorgeous, glorious, wonderful time of year!  Fabulous autumn! 

Jonathan's 2007 Cyclops

And here I am in the hospital!  Many energizing and happy memories of preschool and elementary parades and celebrations are seeing me through ... AND I am wearing orange and black.  While I realized my wings and dinosaur spikes were best left at home, I was tempted to at least don one of my many Halloween hats.  But ultimately I felt I had to restrain myself here in a very adult, VERY serious world.  The orange and black feels daring enough given the fact that the medical staff still express daily surprise that I am out of my pajamas and in street clothes.  No, my jingle bell jester hat would have been too much ....

Trick or treat?  Trick:  Well my sodium bicarbonate infusion set off that dratted air-in-line alarm again through the night;  all in all I managed perhaps 5 hours of interrupted sleep.  Treat:  Well, of course, that comes down to my phenomenal kidneys that have already lowered my methotrexate level to 2.33 at yesterday's noon blood draw!  BOO-yah!  Looks like those incredible kidneys should be continuing their streak of getting me out of the hospital on day 4 of a methotrexate infusion - no matter the dosage!  Home tomorrow afternoon?  Yes, it's looking good!

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Halloween surprise!  Joe knocks on my door at 7:50 with a huge smile ... and a hazelnut coffee with cream!  What's UP?!  Now that's a terrific way to start yet another day of incanceration!!

Of Bike Battles (?), Side Effects, and a Pesky Alarm

Tuesday - October 30, 2012

After canvassing everyone who entered room 120 between 10 am and 4 pm yesterday, I finally offered a bribe of a delicious, perfectly ripe banana in exchange for the stationary bike.  Lo and behold, a smiling RN quickly  wheeled in the familiar bike and we made the furtive, giggling bike-for-banana exchange.  However, the bike has undergone a bit of a significant change. A large, laminated "Property of ..." sign is now affixed to the handlebars.  A salmon sign rather than the more assertive option of red or neon green or orange but a declaration nonetheless of authorized use and of implicit warning:  "hands off!" to all who might consider absconding with this hulking, visible piece of equipment.  A signal of undersurface turf battling always bemuses me and sets off my imagination.  What happened in the last 2 weeks to lead to the sign?  Did an interloper from another floor come down to Oncology and slowly wheel this hulking mass down the crowded halls, through the unwieldy security doors, and into an elevator before repeating the entire awkward process up on his/her own floor?  And THEN did the Oncology Physical Therapist walk briskly around the Critical Care Hospital floor-by-floor, making inquiries and tracking down our precious bike before tilting it up on its wheels and huffily pushing it away on its serpentine return route.  Ah, a good back story awaits!

My third line of "tree rings" coming in

In addition to a third set of "tree rings" left over from my Hyper CVAD protocol, the high-dose methotrexate has set off some enhanced and new side effects.  General bloating and flushing in my face have been an issue and my (rapid cell-growth) skin has been sloughing off like a shedding snake.  Charming, I know.  Yesterday, I experienced a tingling similar to my previous (and continuing at a lesser rate) neuropathy in my fingertips.  The methotrexate brought on strong tingling in my face and feet.  Raising my feet and biking alleviated the sensation in my feet but I was unable to resolve the odd feeling in my face.  Per Jonathan and Megan's firm admonitions, I reported the new side effect to my RN who quickly offered me medicine if the tingling was too painful (not at all) or frustrating (say what?  I can suck up anything this minor).

And now for last night's sleep report....     UGH.     Dexamethasone (steroids), frequent bathroom visits to void the floods of liquid being infused into my system, and an incessant not-to-be-thwarted air-in-line alarm going off on my sodium bicarbonate drip at least every hour all combined to create a fitful, disrupted, unsatisfying night.  The good news is that I have a full, deep bank of great sleep from home and have few taxing obligations on today's agenda.  I'll manage.  It's just bad luck ....

An Even Dozen Hospitalizations (+ New Record for Starting Chemo)

Monday - October 29, 2012

At some points in this ongoing health odyssey, I am simply brought to a halt in utter disbelief.  What the hell is going on?  How did I ever go from blissful-and-busy in a long-wished-for classroom and completely content, enjoying life with my fabulous children and amazing spouse to ... migraine-addled, double-vision wreck to ...  full-time stage 4 cancer patient?....  Ten months has brought momentous change.  I can't say that I am complaining exactly and I am certainly not at all feeling blue but ...  there are days where I am just completely and fully surprised.  Wow.  What a change.

Today is one of those days.  I have checked in for my 12th hospitalization since May 2.  12 hospital stays in 6 months.  I really truly can't believe it.  It must sound ridiculous but I have always been a healthy person!  Until recently, of course  :)

The entire hospitalization process is now completely routine and comfortable.  I know the people here on the Oncology Floor, I am familiar with the room layout and ask for gaps to be filled in as necessary (today we were short a chair), can unpack and settle myself quickly (Megan's blanket on the bed, Jonathan's crossword book at the ready, Casey's Mr. Cow and my blood products on the windowsill), and can then take a moment to appreciate my invariably stimulating view.

Mr. Cow & blood products, Confederate Museum in background

This stay I am once again situated in a room looking west with much to entertain and distract.  The entrance to the Museum of the Confederacy offers tantalizing people viewing.  The trees outside my window are  - so far - resisting Sandy's fierce winds and pounding rains and hanging on to their last remnants of leaves.  Ambulances are idling on the street while the EMTs run in for carbs and caffeine.  AND, I can scout prime street parking spots for Joe.

Hospitals are an effective venue for nurturing patience and keeping oneself busy.  My chemo orders are in, my port is accessed, and I am ready and raring to go.  Just waiting for the high-dose methotrexate to come up from the pharmacy!  It's a good time to watch a Coursera video lecture or to empathize with the folks outside my window battling umbrellas in these hurricane gusts....  Either way, I'm ready for chemo, ready to push back any lymphoma lurking in my central nervous system.

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And chemo was started at 12:50!  A new record!  4 hours to infuse 9 grams of methotrexate.  What's that, you ask?  Wasn't it 6.4 grams last time?  Why, yes it was!  During Friday's oncology consultation, Joe and I asked for the dosage to be cranked up as high as possible.  I am weathering chemo extremely well so ... eradicate the cancer.  Kill the beast.  Leave nothing on the table.  Ask and you might receive (a higher dose of cancer-killing poison) ....  And per John Venezia's recent posting, it's time to start rooting for my kidneys to do their due diligence and purge this poison from my body asap (or at least by Thursday afternoon).

A Soggy "Sandy" Sunday

Sunday - October 28, 2012

The hatches are battened down, ample supplies are in hand, and we are ready for Sandy - this hybrid hurricane / nor 'easter that may last through Tuesday.  Last year's Hurricane Irene resulted in no power for more than 3 days.  We are hoping that we have better luck this time around!  Of course, the Italian Greyhounds are utterly horrified by the torrents of rain that have already saturated the ground and the winds that are currently picking up.  Our challenge will be to get these dogs out regularly and to keep these base-housing wall-to-wall carpets status quo  - how I miss our Arlington hardwood floors!

Tomorrow morning's hospital admission might be at the height of the storm so we will play it by ear.  Perhaps the prophecies of "high-winds and 10" of rain" will be unfounded and a trip to Richmond along tree-lined 64 will be a no-brainer.  If the forecasted doom does come to pass, I'll phone in the morning and see if we can postpone my arrival for one day.  In the vast scheme of this cancer journey, one day will not be a gamechanger.

Dog Days of October

Saturday - October 27, 2012

During last night's designated Trick-or-Treat evening on base, Sadie and Baxter went crazy as they do every Halloween.  Just like the reinforced behavior when barking at the Arlington letter carrier, their hysteria worked to ensure that none of the visiting ninjas, princesses, and skeletons moved in permanently.  Everybody turned and walked away.  Job well done by the hounds.  They dropped in exhaustion in front of the fire.  Today, their easy routine was again disrupted;  they could not sleep in due to an early morning vet visit for vaccines.  Their anxiety and stress then jumped species to humans - me! - when Sadie had a severe allergic reaction.  I brought her back to the vet for steroids (and perhaps epinephrine) and she is being held for observation until late afternoon.  So ... three trips to the vet today, some baking, storm-watching, and some projects mean no time to muse (or brood?) about next steps regarding the BMT.  I am effectively distracted and diverted -- just waiting for the proper balance of hounds to humans to be restored later this afternoon. 

Team Meeting on the Seventh Floor (= No Firm Dates)

Friday - October 26, 2012

Joe and I are spending the bulk of the day at VCU.  First on our agenda is blood work followed by a Rituxan infusion in preparation for Monday's hospitalization and methotrexate.  I suppose that low platelets might once again postpone this plan but ... I'm feeling lucky!  Then we are heading up to the Bone Marrow Transplant Clinic for a meeting with the team about possibilities, prospects, options, and - perhaps! - a proposed plan and schedule.  I'll post an update in the late afternoon / early evening.  Hoping for good news as well as some specifics.  I LOVE a good plan - something to anticipate and build towards ....

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Following our meeting with my physician and my BMT coordinator, I suppose that Joe and I have emerged with an outline of a plan however it's a plan without firm dates.  One thing cancer-treatment should have already taught me is that "definites" are not part of the equation; everything is uncertain and amorphous and that characteristic applies to timelines.  Nicked bladders, neutropenia, and low platelets have all been surmounted in stride over the last six months but all have effected shifts in even my most predictable, well-established chemotherapy protocol. my timetable has been tweaked as we moved forward.

Haploidentical?

Given this uncertain environment, I am still living with some "definites" in terms of my upcoming Bone Marrow Transplant.   First, with my high IPI status, an allogeneic rather than an autologous BMT is advised to best address the chance of relapse.  Second, the odds of finding a third party donor off the register are minimal at this point.  Third, the faster I engraft someone else's bone marrow, the better; I need to be in a state of complete response to proceed to the best outcome.  A great stroke of good fortune exists in that VCU is one of five centers nationwide conducting a clinical trial that allows me access to alternative means of allogeneic BMT - a haploidentical or cord blood transplant.  The uncertainty at this juncture is whether I qualify under the clinical trial's current language detailing participants' inclusion, am eligible now in anticipation of language changes that will be enacted in a January redraft of the clinical trial, or will be eligible in January when these language changes take effect.  I may hear next week about whether we can move ahead now or have to wait until the January redraft is adopted.

More good news:  Jonathan's bone marrow equals Megan's in that they are both a 4 of 6 match for me.  In order to determine who will donate for the haplo transplant, their samples will be tested further for antibodies and viruses that might impact engraftment and graft versus host disease (GVHD).  Time will tell  :)

In the meantime, my blood levels are great, the Rituxan is in, and my hospitalization is confirmed for Monday!  Hurricane or tropical storm, I am checking in and claiming that high-dose methotrexate that is destined for me.  I need it, I want it, I won't wait!

Twiddling My Thumbs

Thursday - October 25, 2012

Is "twiddling your thumbs" a phrase that's even used anymore?  I remember my father using this term frequently and then literally rotating his thumbs in demonstration and emphasis.  Anyway, it's a description that seems appropriate as I occupy some level of limbo awaiting "next steps".  Yes, I do have my next (12th!!!) hospitalization scheduled for Monday and I do welcome this extra chemo to bust through that blood/brain barrier and stave off any lymphoma relapse in my central nervous system.  However, this methotrexate treatment feels like a bridge between the two pillars of my treatment plan:  the six completed rounds of Hyper CVAD that have brought me to a state of Complete Response and the still-anticipated, yet-to-be-firmed up allogeneic Bone Marrow Transplant that offers the best long term outcome.  One more day of waiting, of twiddling my thumbs until we meet with the VCU Bone Marrow Team and vet options and timetables for ... what will come next.  Clinical trial or a donor off the registry?  Full 8 for 8 allele match or going down to 7 for 8 allele match?  Haplo or double cord blood?  Perhaps we will emerge from tomorrow's meeting with little additional clarity but it will feel like we are moving forward rather than just ... twiddling our thumbs :)

Of course, as a confirmed type A (except when it comes to housework) I have been continuing to put my thumbs to good use tackling projects around the house, reading up on the history of cancer, and listening to Prof. Adelman's Coursera lectures (I think I'm becoming a bit of a groupie and I do love his Canadian accent).  Today, I have added in some spice by pulling out some Halloween decor.   Child-focused and cheery, parades and costumes, and a good excuse for adults to dress up -- well, at least for those of us in preschool and elementary schools!  My favorite holiday, perhaps!

Building up my Blood Count?

Wednesday - October 24, 2012

Well, perhaps not in terms of actual blood but my cuddly, home collection has grown with Carolyn and Megan's contribution of two cheery red blood cells.  They look quite surprised to join my platelet in its efforts to improve my health... and to keep me highly amused and happy  :)

It is another picture perfect autumn morning to enjoy with open windows, cool breezes, and birdsong.  Absolutely beautiful ....  Although my peaks in energy level and physical strength have ebbed somewhat in the last two days, I intend to take full advantage of this magnificent October weather and take multiple walks with the hounds.  Other than this lofty physical goal (ha!), I can see today being a repeat of yesterday -- hunkered down, preserving my energy reserves, immersing myself in books and iPad.  I am bouncing between world history from my Coursera class and medical history from “The Emperor of All Maladies, A Biography of Cancer.”  Both histories are absolutely absorbing and can be enjoyed on the deck, in the open air, soaking up the warm autumn sun with dogs on my lap.  Sounds good!

Obliterated? - not quite

Tuesday - October 23, 2012

Taking my cue from yesterday evening's flagging of energy, I am ratcheting it down a few notches today ... trying not to overdo, meting out my stamina, nurturing those pesky platelets and other blood components.  The hounds and I have already enjoyed a fabulous walk but I kept it local rather than trekking to the river (maybe we'll venture out with Joe later in the day).   I am simply enjoying a peaceful day in my own comfie home thinking of family and friends, reflecting on all the positives I have reaped in my personal and professional lives.

Yes, my attention continues to be home focused with house chores (!) taking the forefront.  In "The Emperor of All Maladies:  A Biography of Cancer," the oncologist author writes "our patients found their lives virtually obliterated by [cancer]."   At first glance, my redirect from outward community work to inward home tasks certainly substantiates this observation; it seems that I have dropped everything for the foreseeable future.  But in reality, the focus and clarity that emerges from this "incanceration" reinforces the important elements that remain uninterrupted:  precious children, loving husband, fabulous family, and wonderful friends.  Obliterated?  Nope.

Knocking Out that Punch List

Monday - October 22, 2012

On our favorite route along the York

Starting off the week by finishing off a long to-do list affords a certain degree of (perhaps pathetic) satisfaction.  Baking and care packages sent to the kids?  Check. Swift germaphobic supermarket outing?  Check.  Home-made dogfood?  Check.  Laundry?  Check.  Coursera lectures?  Check.  Follow-up letter to address medical billing discrepancy?  Check.  More bills?  Check.  Quick interaction with Joe during his return home for lunch?  Check.   I am particularly happy to get a second week of baking off to Jonathan and Megan and hoping that I can manage another round next week before Monday's hospital readmission  :)  Now ...  on to projects rather than chores for the balance of the afternoon....

Busy, busy ... yes, I need to keep myself engaged. Yet no degree of activity adequately masks the fact that I am on hiatus from the pace and collaboration that I so value. I do miss the bustle and satisfaction of work, of interaction with a group of colleagues working towards a common goal, of meeting the daily surprises encountered with any group of children.  Perhaps next year ....

Last night, I had a terrific hour-long conversation with a dear high school friend who is now a physician working in bone marrow transplantation.  What a gift to be able to discuss options without the construct of a doctor - patient relationship!  He offered perspective, background, and insight and provided additional information about cord blood transplantation that definitely adds to my comfort level prior to Friday's meeting with my BMT team.  Again, I feel so grateful to have such a wealth of people who are supporting me through my lymphoma challenge.  This unexpected journey definitely has its silver linings.  In this case, the four high schoolers who lunched together in Mr. Cohen's high school biology lab have all come together more than 30 years later to effect this reconnection.  I am relishing the memories and enjoying the present day conversations and updates.