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.

Autumn Comforts

Sunday - October 21, 2012

I am enjoying an autumn Sunday, grateful to be spared mucositis, fatigue, muscle weakness, nausea, or any other side effects of chemotherapy,  I am free and clear of any chemo impact for another happy day.  With this energy and good health, I have already savored a good walk with the hounds, written an essay for my (very interesting) Coursera class, and met up with Gina for brunch downtown.  Gina has been a huge boost these last months.  She gets me up and out of the house, keeps me laughing, and always makes it seem like I am taking just a brief break from the classroom.  Somehow, when hanging with Gina, I do feel that I'll be back in the action at some point soon (even when intellectually I know that I will be sidelined for at least the entirety of this school year). 

After yesterday's long haul in the car, Joe and I are taking it slow and at home for the rest of his weekend.  Football, photo albums, cooking, sewing, and correspondence all loom on my agenda.  I am tempted to Google and do some more research in preparation for Friday's meeting with the Bone Marrow Transplant team but it's SUCH a magnificent day.  No clouds today  :)

Daytripping to Blacksburg! A Happy Day :)

Saturday - October 20, 2012

Carpe diem?  Strike while the iron is hot?  Whatever the appropriate adage may be, Joe and I are being opportunistic in terms of my energy and health and taking a Saturday daytrip to Blacksburg to see our magnificent Hokie!  It's been TOO long; our spring visits were derailed by my epic migraines and double vision so we have not been down to see Jonathan on campus in a year.  I cannot wait!

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A whirlwind, wonderful trip to Blacksburg!  Jonathan, our favorite Hokie Ambassador, escorted us on a long walk through campus from the Beta House to the Duck Pond and all around the Drillfield.  After a parents' treat meal at Bull and Bones interspersed with some football viewing back in his room, we had to hit the road again.  It was a fast but fabulous chance to cuddle my sweet boy, check out the new stitches in his head, and share some of his day-to-day.  I just needed to see him on his own turf.  Joe made that possible.  I am a reassured and happy mom.

Platelets: Plunging or Progressing?

Friday - October 19, 2012

I'm off to Richmond to find out!  No visible bruising that I can find on my body so I'm betting that I am still in double digits  :)   This solo trip is a given without even having to discuss the subject.  Yup, that's how wonderful I feel.  No worries about being so pain-riddled (pre-chemo), fatigued (early chemo), or nervous about being pain-riddled or fatigued (late chemo) that I really felt that I needed a ride.  Independence!


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Platelet plateau!  My blood levels are good and I am dismissed from Richmond until ... (drum roll please!) ... next Friday when I go in for Rituxan and the consultation with the Bone Marrow Transplant team.  Yes, that's a FULL week between medical appointments :)

Energy + Opportunity = Productivity

Thursday - October 18, 2012

Now that it's cooler, "Tick Alley" is back in play

With my energy steady, I continue to tackle the house.  Wasn't this project my original plan for autumn 2009, after our move south and before I started graduate classes?  With this cancer-imposed change of agenda, I may set a new standard in terms of organization  :)

As for my platelets, Monday's 50 point drop means that I will be headed back to Richmond tomorrow for a blood draw.  Ah, well ....

Long walks with the hounds, perfect autumn weather, fabulous energy and strength, projects awaiting completion ... sounds like another lovely day.

Random Cheery Thoughts!

Wednesday - October 17, 2012

Happiness is  …

Knowing that my children are surrounded by caring, attentive friends who make sure that they are finding joy in their work, studies, and fun and … are escorting them to the ER for stitches when needed (Jonathan) and ensuring that they hone their mad trivia skills on a weekly basis (Megan)!

Plan for today?  Feeling strong = housecleaning!

Hearing Kim’s voice on the phone in the middle of the day … in the middle of the week … in the middle of her busy work obligations!

Running into Heather downtown, sharing a hug, and hearing how many of my first graders are now doing in second grade!

Getting supportive and newsy emails from family and friends on five continents!   Feeling particularly relieved by and grateful for the quick communications turnaround from Barb and Michael!

Looking forward after 33 years to connecting with one of my closest high school friends!

Walking with Joe through CW and smelling autumn in the cool evening air! 

Enjoying memory lane and our amazing family experiences as I digitize our reams of photographs! 

Seeing how Megan’s original “Be the Match” Facebook posting has been shared and reshared by her friends, my friends, and Jonathan’s friends and that so many people have signed up for the database!

Thinking that sweet baby Michael says my name when he says his prayers at night (THANK you Jen and Sean)!

Life is very VERY good and I’m feeling ... happy!

Solo Trip #2 to Dalton ("No Bags Hung")

Tuesday - October 16, 2012

Well ... "solo" except for my platelet ...

Having packed up my extra "just-for-insurance" sofy fuzzy yellow platelet, iPad, New Yorkers, medical records book, phone, camera, and patience, I am off up I-64 to Dalton for a blood draw.  IF my platelets are acceptable, then not only will no bags be hung but also I may not have to go back to VCU until next week!

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Wow!  3.5 hours roundtrip door to door!  Home already and it is not yet noon!  Bravo for my platelets who are fighting the good fight!  They are on the decline however (141 to 91 since Friday) and my RN was unsure about when I would need to return for my next blood test.  She will check with Dr. Perkins who said on Friday that if my levels were "good" today then I might not have to come in for the rest of the week.  I'll know tomorrow if I will be Richmond-free until next Monday.  Fingers crossed!

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Thanks to NPR and my iPad, I banked four hours of housework and organization today.  What is going on?  Well, given that I've done almost nothing in 2012, let's just say I'm due (and thank you to Joe and Carolyn for keeping the house from being condemned).  Pretty soon I'll be at the point where I'll be deep cleaning the bathrooms ...

Stamina is a Fabulous Thing

Monday - October 15, 2012

Pep in one's step is a gift when you have cancer.  As I have said many MANY times in the last few months, I am feeling truly fortunate to have weathered my "nasty" and intense chemo protocol so well and to have seen my stamina improve with time.  Rather than fading with the cumulative effects of repeated chemotherapy, I have grown stronger.  Now, one week after my mega-dose of methotrexate, I am almost feeling back to my former self, strong enough to overcome my lingering cancer-weak worries about venturing out on my own for a walk and then needing to call for reinforcements if my pulse goes ballistic or if my legs give out.  No concerns these days!  The hounds and I made it down to the York River to start our day!

A Splendid Sunday (with some sewing fun)

Sunday - October 14, 2012

"Sun drunk" on the deck

What a picture-perfect autumn Sunday!  Joseph and I are taking full advantage.  We've already enjoyed a walk with the hounds down to the York River and have now thrown open all the windows and opened the doors to let in this brilliant sunshine and the phenomenal breeze.  Perfect.

I'm also excited that my energy, alertness, and focus are such that I was able to resume my Sunday baking routine.  My weekly home-baked care packages for Megan and Jonathan have been on sabbatical since mid-spring when the migraines and vision issues became too acute to do anything but lesson plan and cradle my head in hopes of relief.  Six years of tradition felled by lymphoma ... but now I'm back in the kitchen prepping some treats for my hard-working, treat-deprived (?)  college students!  Baking for (and with) my babes has always been a highlight.  I feel splendid!

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I am utterly content fixing / refining a Snow White dress originally made for Megan's senior year spirit week celebration in 2005.  Finishing seams, resetting the zipper, trimming edges - very satisfying.  Packing it up for her Halloween celebration this year in Davis, CA.

Platelet Power!

Saturday - October 13, 2012

Megan sends reinforcement!

You know, the mail has a certain level of predictability.  These days, our box is mostly full of "Explanation of Benefits / This is NOT A BILL!" notifications from our dependable, stalwart insurance company so the level of mail surprise has declined even more.  Well, yesterday the most unusual item - perhaps ever! - arrived in the mail.

"What could it be?"  I wondered, making eye contact with a pair of attentive googly eyes staring up at me from a body of soft yellow fur (?) ....
Feet?
Hair?
No other discernible features?
Having no real idea, I finally checked its tag ...

A PLATELET!

Fabulous!  I could not stop laughing!  I need every platelet I can get!  This platelet is truly a precious commodity and has become an immediate favorite.  Thank you, Megan!  Our sweet girl hit the nail on the head!

Overview of Potential Clinical Trial

Ah, the internet is a beautiful tool.  Search and you may find.

This clinical trial was mentioned by my BMT coordinator as an option if / when a full donor match does not come through.  I believe I should meet the eligibility criteria.

Double Cord Versus Haploidentical (Blood and Marrow Transplant Clinical Trials Network #1101)

Trial Description  Summary:  "Hematopoietic cell transplants (HCT) are one treatment option for people with leukemia or lymphoma. Family members,unrelated donors or banked umbilical cordblood units with similar tissue type can be used for HCT. This study will compare the effectiveness of two new types of bone marrow transplants in people with leukemia or lymphoma: one that uses bone marrow donated from family members with only partially matched bone marrow; and, one that uses two partially matched cord blood units."

 

Next Hospitalization? Scheduled!

Friday - October 12, 2012

This day has SPED by!  After a daytrip to Richmond, a walk with the dogs, and an oh-so-tempting-and-couldn't-be-resisted nap on the couch, I am relieved to see that some glorious sunlight remains on this autumn day!  Nonetheless, it is indeed late afternoon !

Joe and I gleaned some specific information in our meeting with my oncologist.  That is, we learned that it is possible for me to have up to 4 rounds of high-dose methotrexate while awaiting a bone marrow transplant.  These hospitalizations will be about 3 weeks apart and will serve to stave off relapse of my lymphoma in my central nervous system.  Rituxan infusions will serve to keep me in remission in terms of systemic lymphoma.  Between both of these procedures, I should be able to remain in "complete response" until the stars line up on the BMT front.  We scheduled my next high-dose methotrexate hospitalization for Oct. 29 and another follow-up head and orbit MRI for Thursday Nov. 8.  My physician does not believe that I will become neutropenic during this time (hurrah!) but that I may need some platelet infusions.  Sounds fine by me! 

In finally going online this afternoon, I find myself overwhelmed with the support and love of my friends and family.  You all are keeping me positive and hopeful.  The Hyper CVAD protocol is complete and now dates and procedures are somewhat nebulous.  As my path forward becomes less concrete and outcomes less certain, I am incredibly buoyed by my connections and community.  Yes, I may be somewhat stuck in this stasis of semi-isolation but modern communications are keeping me sane.  The phone calls and texts are godsends!  Any Facebook "like", response, or comment is a boost to this girl in her lymphoma bubble!  The sharing of the Bone Marrow Registry info has taken on a life of its own and been a genuine joy!  THANK YOU!  And to Kim and John, you have made my day!  Much love to all  :)

1, 2, ... 9 Thoughts for 10/11/12

Thursday - 10/11/12

Get me HOME!

#1 - Coming home before noon today has been an incredible treat!  Joseph has proven once again to be a consummate schedule-juggler and quickly worked wonders to drive into Richmond to get me back to the comforts (and hounds) of home as early as possible!  As he said, Joe doesn't want me spending any more time than absolutely necessary in the hospital.  I was so HAPPY to see him  waving up at me from the street as I looked out my window and he jogged into the hospital!  31 years into our relationship and my heart still jumps  :)

#2 - While this 11th hospital stay was generally uneventful, Joe and I had quite a jolt yesterday after my (recently graduated / just finished training) RN drew blood from my port for a potassium check.  No big deal, right?  It happens multiple times a day.  Well, when I stood up after she left, my white shirt quickly transformed into a vivid red, becoming covered with spreading blood.  Yikes!  I realized that I was bleeding out of my tubing / my port.  The response time from the nursing staff was immediate and the cause was a connection that was not completely screwed in after the blood draw.  We were (literally) mopping blood off the floor and scrubbing it out of my shirts, pants, and socks.  My RN and her supervisor were apologizing for the rest of the day.  Live and learn.  I'm sure that those connections will be checked and tightened routinely in the future.  It was quite a sight.

#3 - My kidneys have come through again big time in purging the high-dose methotrexate from my body.  They have had significant help from the huge amount of fluids being pumped through my body.  As a result, I am very bloated.  Small price.  I am forever grateful  to have escaped most side effects of chemotherapy.

#4 - Back home means back to chores and productivity rather than going (a little) stir crazy in the hospital or just hunkering down.  Laundry and unpacking are already well underway.  Continued work on Megan's closet?  Maybe not today  :)  I'm more tempted to sort through photos ....

#5 - Carolyn and I are trying to firm up her upcoming travel east.  Joe is on a business trip from 11/3-10 and Carolyn will be coming to keep me company either in the hospital or here at home!

#6 - Tomorrow, Joseph and I are back to Richmond for my Neulasta shot and a meeting with my oncologist.  We will try to get an estimate about the timing for the high-dose methotrexate #2 hospitalization as well as his opinion about how much leeway I have in getting started with the allogeneic BMT.

All together in the Yucatan, 2007

#7 - Speaking of which ... yesterday I called Angela, my Bone Marrow Transplant Coordinator and got an update on the progress with my 3 potential donors.  She reported that 2 potential donors "are not available" and that while testing is proceeding on another 2 (!)  potential donors she feels that these donors are "long shots and probably will not pan out."  Hmmmm ....  In a BMT team meeting, my name came up as a potential candidate for a new randomized clinical trial involving cord blood stem cells and haploidentical transplantation.  So much critical information to wrap my head around ....  We meet with the BMT team to discuss options on Oct. 26.

#8 - Transplant confusion seems to be an undercurrent these last many weeks.  What to do?  I am feeling fabulous so a dichotomy certainly exists between my "Complete Response" to the chemo and the thought that I must act soon (read: before any relapse) on the BMT.  How should we proceed if a full donor match does not come through?  Look for a donor with an incomplete allele match (maybe 7 of 8)?  Buy time with an autologous transplant?  Go forward with this clinical trial?   So much to consider.  So many details to absorb.  Such a steep education curve.

#9 - And these discussions and research efforts are full family affairs.  Yes, moments of icy panic can ambush me in the most unexpected moments but, flooded with love from my family, I am generally calm and procedural, trying to figure out what path might produce the best outcome.  Moving forward.  Feeling grateful for my family.  I also feel incredibly, brazenly, hungrily GREEDY!  Greedy for time!  I want TIME with my family!  Oodles of it!  Years of it!  Decades of it!  What BMT decision will optimize this time?  Time to get back to the scary statistics on the internet so we can make our best guess  :)

Quoting Megan: Dreams of Reading "Kat Kong"

As a proud (and teary mom), I am reposting (with permission) from Megan's blog:

How Can I Help?

I finally have an answer for all the people who have asked how they can help me and my family.

Please please please join the Be the Match Bone Marrow donor registry.

*Fill out a form here: (3 minutes)

http://marrow.org/Join/Join_the_Registry.aspx

* They will send you a cheek swab kit and lots of envelopes (maybe 5 minutes)

* Send it back and give hope to a TON of people across the country the the world

I never participated in those bone marrow drives because it felt too scary. But NOW I know that donating is pretty painless and you are fully compensated.

ALSO if you are called to donate, you save someone's life.

There are families like mine all over the country hoping and praying that someone will step up and give them a chance to live for years instead of months. Every night I go to bed sending out secret signals to the three strangers who have matched with my mom. I desperately hope that one of them, without any information about us, will somehow realize that I need my mom to see me graduate with a Ph.D, dance at my wedding, and read Kat Kong to my children.

Science is so beautiful. It gives us so many chances to live and thrive. The only thing more hopeful and redeeming is the potential of other human beings. Literally the potential they hold IN THEIR BLOOD! Hahahaha. Seriously, there are people in the US who for some strange genetic reason have exactly your same type of bone marrow (way more rare than blood type). Because human beings are smart, compassionate, and amazing, when one of them gets sick you can step up and save them.

So consider being even more heroic and amazing than you already are!

This kid thinks it's a good idea

To Google or Not to Google?

Wednesday - October 10, 2012

That is the (tricky) question ... when facing or in the midst of cancer treatment.  Stage 4 cancer?  Well, with that sobering diagnosis, you know that the virtual cortisol level on the web is probably sky high and that the possibility of coming face to face with your mortality is a certainty.  Yes, I may want some information  - especially any reassuring statistics - but to get to those gems I know that I will have to pass through some bleak survival rates and be overwhelmed and devastated by other cancer fighters' descriptions of chemo effects and poor outcomes.  I have known my limits.

So my decision has generally been to avoid internet searches except for the rare instances where I have narrowed my inquiries to Google Scholar or used "medical journal" in my search to funnel my results to drier, more academic discussions.  Joe, Megan, and Carolyn have been braver internet researchers, sharing their results in our conversations or sending me links.  All three have probably read more on marrow.org than I have;  Joe says that he has read every word.

I bring all of this up because I spent a large chunk of yesterday reading cancer blogs, Stage 4 DLBC Lymphoma blogs to be specific.  Megan has been reading cancer blogs since late spring and yesterday when she once again referenced a blog she had read, I decided to gird myself and just plunge in.  My takeaways are that remarkable wells of resolve and strength exist in the face of great suffering in the cancer community and just how variable and personalized all of these cancers are.  Oncology truly is an art as well as a science.  I also realize and am appreciative once again that I have been extremely fortunate in my response to treatment.  While I can't slough off the 3 neutropenic fevers that landed me back in the hospital, I have really had little to no side effects from this massive and intense chemo protocol.  Mucositis after the even rounds?  Yes.  But no vomiting or nausea and after my first 2 rounds, less fatigue and muscle weakness.

In scrolling through the blogs, I have not yet had any hits for Stage 4 DLBCL treated with Hyper CVAD or with CNS involvement so I created an account and posted on Blog for a Cure.  Now that I have broken through this emotional wall, I am going to have to measure out my participation.  I can easily see spending another hospital day reading these very inspirational and informative blogs.

"I Spy" Joe leaving the hospital yesterday afternoon!

In non-internet news from the Oncology floor, my kidneys are once again working wonders!  Monday's mega dose of methetrexate is being purged at a phenomenal rate.  Last night, my blood level shows 1.3 micromolar (1 x 10 to the -7 M) and I need to go down to 0.05 ("undetectable") for discharge.  I am so close and have purged so quickly that they are actually going to draw my blood earlier this afternoon with the thought that I might go home in late afternoon or early evening!  HURRAH!  Go kidneys!  On the slightly negative side, my blood levels are already trending downward and my potassium has been declining in response to the methotrexatre.  Yesterday, I took supplemental potassium but my level has continued to go down and today I am taking 4 times the level of potassium to try to level it off.  Neither piece of blood level news counters the good news about my methotrexate level and I should be going home soon - today or tomorrow at the latest!

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Just finished listening to an amazing Fresh Air interview recommended on a blog I read yesterday.  Terry talks with an oncologist about his book:  The Emperor of All Maladies: A Biography of Cancer.  I've already reserved it at the library :)  

Successful Lobbying for a Decent Sleep ...

Tuesday - October 9, 2012

... despite defending against the effects of kidney-damaging high-dose methotrexate.  Q:  How do you protect precious kidneys against the potential "vicious cycle" of mega-doses of kidney-tartgeting chemotherapy?  A:  You run continuous high-volume infusions of protective liquids, drink copious amounts of water, and make frequent trips to the bathroom.  Despite the disruption of regular (but quick) bathroom visits, I enjoyed a decent night's sleep thanks to an early evening, firm but friendly sleep-optimization conversation with my familiar night RN and clear but smiling body language of covering my eyes with my arm and remaining silent when my care partner tried (repeatedly) to chat me up during vitals in the wee hours. Not a great sleep, but decent.  I'll take it  :)

We just had our morning bedside shift-change RN meeting and all 5 women were familiar faces (2 are trainees but I even know these women from previous roles).  One benefit of 8 hospitalizations on the same floor is that you really get to know all of the players.  The physicians change somewhat.  The residents and interns rotate out to go to a different department or clinic and the attendings take weekly turns monitoring the floor.  I have the greatest continuity among the fellows who like the RNs and Care Partners provide a comforting degree of familiarity and connection. 

My Leafy View (+ My Knockout Chemo Dose)

Monday - October 8, 2012

Hospitalization #11 is underway!  My platelets came in at 119 and I quickly made my way upstairs to the Adult Oncology floor.  However, in a true change of scenery, I am on a completely different side of the building, looking west.  My large window overlooks some large leafy city trees, older brick buildings carefully repurposed by VCU, and the Confederate White House now used as the "Museum of the Confederacy."   I love the vitality and action of this new-to-me street view.  Ambulances pull along the "no parking" side of the street and the EMTs rush back into the hospital, later re-emerging with coffee, bags of food, and - once - a balloon.  Cars using the 4 precious parking spaces on the right hand side of the street are sometimes left with their hazards on, a plea perhaps to convey urgency and to ignore the neglected meter.  One truck had its hazards on for well over an hour and a security guard finally walked up to it and placed a note under the windshield wiper (what did it say?).  And, of course, with my Yankee bent and my "the war lasted 4 years, you lost, get over it" view, I am fascinated watching the tour groups exit the Museum of the Confederacy.  

I'm all settled into my space, familiar RN Allison has accessed both sides of my port, and the attending physician has talked to me about the "novelty" of this high-dose methotrexate protocol and how useful it should prove in targeting my Central Nervous System (CNS) involvement (now I understand that orbits and sinuses are considered part of CNS).  Now I am waiting for the pharmacy to deliver the chemotherapy and to get this treatment started.  I'm ready.

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YEAH!  The exercise bike has found a new home in room 114!
BOO! Has the hospital server blocked Facebook?  Neither the computer nor the iPad can access it.

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The chemo was hung at 4:30 - not too bad, 6 hours after getting upstairs.  The methotrexate dosage - as billed - is indeed HIGH:  6.4 grams infused over 4 hours.  In contrast, in my Hyper-CVAD even cycles, I received 1 gram of methotrexate infused over a 24 hour period.  This chemo is a knock out ... for any possible lymphoma lurking in my central nervous system I hope ... and not for me  :)   Actually, the two pharmacists and the four (yes, count 'em, FOUR) oncologists who have been in to consult with me today all state that side effects will be minimal despite this epic dosage.  In fact, the mucositis tied to my even Hyper-CVAD cycles will not be repeated here with such intensity since the main causal factor in that affliction is the cytarabine, not the methotrexate.

As for Facebook, I am back up (at least for the time being) after asking my nurse what was going on.  30 minutes after my inquiry - voila!  It finally loaded!  Being blocked from Words with Friends and my NYT Crosswords Subscription is a drag but a Facebook block?  No way.

In the Warmth of the Fireplace ...

Sunday - October 7, 2012

... the hounds curl up in their dog beds and BASK!  A happy Italian Greyhound is a warm / hot / cooked Italian Greyhound....  On this first truly nippy morning of autumn, the fireplace is a welcome spot for both dogs and humans.  Joe and I are both on our iPads enjoying the warmth and the peace of a quiet morning at home.  After awakening to the comfort of the sound of rain and a cool crisp breeze through the open windows, I am preparing for my last day before tomorrow's expected (11th) hospitalization.  I will miss my access to fresh air!  Today's agenda (because I do indeed love a good to-do list) includes finishing up a Coursera class paper on the effects of the 14th century plague pandemic, tackling Megan's* closet (part 5?), enjoying some sewing machine time while watching football, and meeting Gina downtown for lunch.

So today is my last day for a while to revel in feeling perfectly, absolutely, blissfully fine!  A good starting point for an infusion of high-dose methotrexate?  Lest we all forget the toxicity of this poison ....

"Methotrexate is eliminated primarily unchanged in the urine.  This means that a patient’s renal function is a critical factor in predicting the magnitude and duration of methotrexate levels following high-dose administration. Very high levels of methotrexate may lead to precipitation of the drug in the renal tubules.  This can cause methotrexate-induced nephrotoxicity, with increased serum creatinine and the potential for acute renal failure. Once methotrexate-induced nephrotoxicity occurs, a vicious cycle is initiated.  Nephrotoxicity with impaired renal function leads to even more delayed clearance of methotrexate, with further impairment of renal function and high sustained methotrexate levels in the blood."

My kidneys have performed admirably and with gusto in the past.  Let's all wish them well as they take on the challenge of a higher dose of this powerful chemo drug.  Side note: "vicious cycle" is not a phrase I come across often in medical articles. Hmmmm.... Not sure I like it ....

* For the record, "Megan's closet" is generally a storage area and not filled with the detritus of M's pre-Davis, CA living.

Feeling (a wee bit) Blue

Saturday - October 6, 2012

Our "an" atop some blues

Not navy blue or royal blue but maybe sky blue or robin's egg blue.  Just a bit blue despite the fabulous autumn weather and the bright, crisp sunshine.  I'm happy to realize that this less-than-cheery state is the exception rather than the norm and I suppose having the blues is inevitable when you are in the midst of treatment for stage 4 cancer.  Nonetheless, I would like to redecorate my approach to the day and find a sunnier emotional slant. 

And the best way to combat the blues is with action!  I have a sneaking suspicion that last night's task of burning photo files onto CDs might be the origin point for my aquamarine state so today I am staying away from memory lane.  Instead, I may plow back into Megan's closet or once more break out the sewing machine for instant gratification and sense of accomplishment.  My physical state remains strong so walking the hounds down to the river (for a third day in a row!) is a must.  That outing is a guaranteed stimulus.  A cure-all.

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Well, I may have been wrong about avoiding memory lane.  A high school friend just sent me a movie made during our senior year, essentially a video yearbook full of cameos of peers and teachers.  What a fabulous surprise! 

A Relaxing Visit with Sally

Friday - October 5, 2012

Forget sweating in the closets and digging through boxes, today was a day for laying back and relaxing a bit with Sally!  We enjoyed that beautiful familiar walk with the hounds down to the York River dock and watched a boat working the crab (?) pots close to our shore.  Then after going through Sally's recently discovered collection of Dad's old slides, we ventured out to Second Street for an al fresco lunch.  Typically, while feasting on that food, we were thinking about more food and made plans to go to Peter Chang for authentic Chinese on her next trip up the interstate.  How lucky we are that Williamsburg offers such a broad and quality assortment of restaurants! I'm certainly taking advantage.

Closets and Coursera (+ a Return to our River Walks)

Thursday - October 4, 2012

Found and tossed....  Like a CV on floppy disks!

Another protective, hunker-down, homebound day.  I am taking advantage of my energy and degree of physical prowess by cleaning out closets and filling Goodwill, recycling, and trash bags.  Perhaps it's a bit of a purge ....

I am also totally enjoying my plunge into world history and filling in some considerable holes in my knowledge and understanding of South American events.  Thank goodness for Carolyn's discovery and suggestion of our history class on Coursera!  It is simply wonderful.

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The creek on one side ...

... and the York River on the other.

Our perfect Williamsburg walks are back on the agenda!

Counterintuitively Germaphobic

Wednesday - October 3, 2012

The calm before the storm

Yes, I am feeling the best I have since early morning December 28 on Seven Mile Beach, Grand Cayman.  Pretty amazing, yes?  Simply put, I am no longer feeling the effects of the DLBC lymphoma.  It's gone (as far as we can detect).  The chemo has been a success and my "complete response" is documented in my PET scan and my MRIs.  Part 1 of this cancer journey is a joyous, total success!  I am blessed and grateful.

So, why am I so nervous this week?  What is keeping me so spooked that I am hesitant to go to the supermarket?  Why opt for dining in rather than a trip out in the world for dinner?  I am feeling very, very gunshy about venturing outside and encountering germs (and other people).  Perhaps, this "found week" is so very precious and I am feeling so very good that I simply do not want to risk ... anything!  I understand intellectually that the odds of an early hospitalization due to a fever / infection are infinitesimally low yet I continue to worry that my temperature might elevate and then my "found week" will be brutally abbreviated.  It isn't logical, it's emotional.  I am glued to the house and its environs, making the most of this opportunity to clean out closets and to toss, sort, and organize.  I suppose I am a newly inaugurated germaphobe ... took me long enough :)

(Deliberately) Raising My Pulse

Tuesday - October 2, 2012

Yesterday's (3 hours + of) vitals confirmed that my pulse rate has definitely returned to a consistently lower, more manageable rate.  My 153 bpm peak of a few weeks ago seems to be firmly in the past and I feel less winded - and safer! - in moving around in general and even in ascending the stairs.  Now I am excited about getting outside with the hounds, walking around the neighborhood, and raising my pulse for a bit of long-neglected cardio.  My BMT physician emphasized cardio way back when in the beginning of the summer when I was in Hyper CVAD round #2 on the BMT Unit floor.  However, given that I was breathless just walking to the kitchen or frozen with leg fatigue as I tried to raise myself off the floor or couch, a cardio outing was not an area where I felt comfortable at all.  My focus during these many months has been on keeping my pulse down and under control.

With the conclusion of my "nasty" Hyper CVAD regimen, I have taken the hounds out solo without fear of becoming stranded with fatigue on the other side of our neighborhood or - even worse! - stumbling and falling down due to a loss of balance.  It's time to up the ante and go for multiple daily walks and maybe - just maybe - feel comfortable enough to take the dogs down on our old route to enjoy the glorious expanse of the York River.  Today on our morning walk, we encountered one glitch with my current physical state.  While the hounds and I were doing just fine at a steady pace, when a rain shower burst upon us, I realized quickly that there was simply no way that I could manage even the slowest of jogs to get my water-adverse Italian Greyhounds out of the rain.  Poor thin-coated Baxter looked at me plaintively yet there was no avoiding his becoming all spotty with raindrops.  Sadie just soldiered on, eyes forward.  We were all damp when we returned home but my pulse?  Still within reason  :)

Platelet Predictions? It's Lucky 53 - Megan wins!

Monday - October 1, 2012

Megan suggested that we start a pool and predict my platelet level in today's blood draw.  I need my  platelets to be at 35 in order for my (11th!!) hospital admission to stay on track for tomorrow.  While Megan and I put in a 50 and a 42 respectively, Joe put forward a 33 BUT said that with my numbers moving up and a hefty dose of goodwill, my hospital admission will still go ahead.  Now that's a bet with chutzpah.  I should know by early afternoon ....

In any case, I will be getting a Rituxan infusion today but NOT having a lumbar puncture for intrathecal chemotherapy.  Because the methotrexate penetrates the central nervous system, the high level of this week's methotrexate infusion makes the intrathecal treatment redundant and unnecessary.  I am more than happy to avoid another spinal tap  :)   Home by mid-afternoon!

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1:30 update:  Ah, waiting at Dalton ....  To quote Joseph, "I was counting on the fact that after dropping you off  2 hours ago, nothing would have happened".  Well, technically, the basics have happened; my port is accessed, blood was drawn, and my blood labs are back and it's only been 3 hours ....  Big BIG news however .... My platelets are in at 53 (Megan wins the pool!) but Dr. Perkins does not want to admit me for the high-dose methotrexate until my platelets are at 75.  So - surprisingly - my hospital admission has been delayed a week.  I don't need to return to Dalton for (wait for it folks, this is MORE BIG news) an ENTIRE WEEK!  Found time at home.  I am at a bit of a loss - but happy!

As for today, we are STILL waiting for a call from the infusion room, then my pre-meds, then wait for the pre-meds to kick in, then hope that the Rituxan is waiting and at hand, then 2 hours of Rituxan.  Joe has foraged an Au Bon Pain caprese sandwich for me and is now off on a walk....  I remain all ears waiting for my name to be called!  Forget DMV folks, these waits are epic.

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Home at 5:55.  What was I thinking writing "Home by mid-afternoon!"  That's just crazy-talk, Christine.