Scanning Away

August 1981 - Shanghai, China

Friday - November 30, 2012

My liver and I have had a very productive day - imbibing much water and getting good rest, exercise, and nutrition.  I also continued to tackle my clean out campaign.  Why not just toss out everything into the recycling bin?  Well then I wouldn't unearth loose photographic gems! Such as this great picture from the early months of dating --->
I found it in a letter from a fellow student (not Tim Geithner) after we returned from that first trip to China, a summer of study at Beijing University.  The bunches of letters are terrific finds.  I am transported, enlightened, and enriched!

My New Favorite Organ

Thursday - November 29, 2012

Waiting at Dalton Clinic ... at Massey Cancer Center ... at VCU

Perhaps with all of my kudos and appreciation going to my amazing methotrexate-purging kidneys, my liver has been overlooked.  Well, not anymore.  My liver is getting my full and complete attention these days.  Today's blood work shows continued and accelerated growth in the levels of my AST and ALT liver enzymes.  Ugh.  In sharing the numbers on the telephone, my RN was very calm, totally procedural and "not to worry, time will bring the numbers down" but I pressed about changing something up to reverse this trend and she consulted once more with my oncologist.  He then pulled me off fluconazole, an anti-fungal med I have been taking since May, and will meet with me when I am at Dalton next Wednesday for another blood test.  In the meantime, I shall try to avoid googling "fluconazole liver toxicity" more than once (or maybe twice) a day and will imbibe even more water than usual. Livers love water and I LOVE my liver - my favorite organ.  Move over kidneys, you've had your time in the sun ....

Forget productivity and projects.  Time for a nap on the sunny front couch with the hounds.

Baking the Day Away

Wednesday - November 28, 2012

I am battling some physical muscle fatigue with a kitchen workout.  Jonathan's favorite cake constituted this week's mailing to Blacksburg and my first batch of ginger snaps in recent months was just the thing to awaken the senses on a cold winter's day!   Joe scented the air like one of the hounds when he came home for lunch - very aromatic and quite yummy  :)   It may just rival gingerbread in that department ....   Hmmm, maybe that's the subject for next week's baking.

I'm off to Dalton tomorrow for blood work to check my liver enzymes.  I will try to get some follow-up on the scheduling of a next round of tests AND to see if my two oncologists actually touched base.  Yesterday my VCU BMT coordinator emailed me to ask what had happened at Hopkins and I gave her the "watchful waiting" scoop but ... have not heard anything else.  Communication - it's a terrific thing!

Sunny Steps Forward on a Grey Day + End of Vacation?

Tuesday - November 27, 2012

After my morning admin meeting with HR, my substitute status should be activated late this afternoon.  Then I'll be one step closer to getting back to work, a welcome / cheery return to my normal pre-cancer routine.  Just to get up and out in the world!  To work with elementary schoolers!  Sounds great to me!  But, yes, I plan to modulate my efforts and not to overdo ....

No phone call yet from VCU to discuss the Hopkins meeting.  I also need to schedule my next CT scan.  I'll give it the end of the week and then I'll chase down that appointment.

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Hooray! Just finished the last step in registering as a sub in my former school district. "Welcome back from vacation" read the banner on SubFinder. Ha! Best (automated) comment in memory! Point of fact: If this was a vacation, I would like a refund please!

Getting the Ball Rolling

Monday - November 26, 2012

Today was devoted to keeping my many home projects moving forward and to making progress on the work front.  I have an appointment tomorrow that is not medical -- a wonderful, phenomenal, back-to-normal change of pace!  It is work-related!  Woohoo!  I'm meeting with HR to get all of my paperwork together to allow me to substitute.  I am thrilled about returning to a more normal rhythm, with more interactions, no focus on cancer, and young children.  What a treat!

I postponed my trip to Richmond for blood work until Thursday to allow more days to elapse -- more time to go by for those worrisome liver enzymes to begin their decline.  I know myself well enough to be aware that a continued high number might surface some serious fretting.  After all, I did just hear the words "organ failure" in a medical consultation.  Yes, they were said in the context of what must be avoided but sustained high liver enzyme levels will certainly spark some perseveration (perhaps just a bit) on those two words; I know myself.  I did not hear from VCU today about the phone consult with Hopkins.  Closing that conversational loop and scheduling my next CT scan are on tomorrow's agenda.

"So, When Can I Return to Work?"

Sunday - November 25, 2012

Joe and I have been batting around this question and other decisions today - at home in front of the fire, walking the dogs on "Tick Alley", and out at Bonefish for lunch.

Q #1:  "So, When Can I Return to Work?"
Now that I do not need to guard so intently against infections / illness that might delay planned hospitalizations, I should be clear to go back to work, yes?  Nothing else is holding me back.  I feel great and have ample energy.  I am very excited at the prospect of working and will call HR first thing tomorrow morning to determine how to return to the substitute list that I was on as a student teacher.  I'm thinking that I will start by limiting myself to the comfortable confines and community of Matoaka, my old school.  SO so so SO excited to throw off the restraints and to get OUT and contribute again in a classroom.

Q #2:  "So, What About San Francisco?"
After all, Joe's office has been amazing in holding this position for him and they need an answer asap.  I am nervous about the possibility of relapsing in an unknown city, without a support group, and so far from the promise of that mini-haplo BMT at Hopkins.  But in keeping with the gist of "Strictly Ballroom" I am trying to not live my life in fear.  We're continuing on with the assignment after a one year lymphoma delay.  It's a Summer 2013 move to San Francisco for a 2 year tour (unless I relapse before that time but let's hope NOT).

Q #3:  "So, Where Will That Family Vacation Be?"
Bahamas?  Sanibel?  Virgin Islands?  Puerto Rico?  They're all in the mix.  Last year's original plan to go to Maui with Carolyn and family is off the table.  Let's just find a warm place to be all together and relax.

Aren't these questions much nicer / less terrifying than the questions we were contemplating just two days ago?  Oh, yes.  It is a relief to have decision-making off the table even if relapse v continued health is essentially a mere coin flip.  What can you do?  You never even know when that coin is going to be tossed in the air.  Just reflect on the Serenity Prayer and hope for the best  :)

Letting the News Sink In

Saturday - November 24, 2012

First and foremost, I am keenly aware that today I am enjoying my husband and my hounds at home rather than being infused with chemo on VCU's oncology floor as envisioned just a week ago.  Furthermore, the sky is a brilliant blue, the fireplace is pumping out heat, and both children are happy and enjoying great company in Blacksburg and in Denver.  Life is good.  Home and health beat the hospital any day!

After 12 hours (!) of deep dreamless sleep, I awoke with the full realization that we have entered a new stage in our family's cancer era.  For the first time since mid June, a bone marrow transplant is officially off the (short-term) timetable.  The anxiety of "sitting tight" or opting for a high-risk transplant has been lifted as the decision has been taken out of our hands.  There is one U.S. hospital where I can receive a haplo BMT and that hospital's leading lymphoma specialist is not referring me for this procedure at the present time.  Dr. Ambinder echoed our own on-going debate:  if I am currently without any evidence of cancer, why chance a high-risk BMT?  The details of graft-versus-host-disease are daunting and those mortality numbers are difficult to absorb.  Odds exist that I may be fine "as is" and that a BMT might kill me.  I have mulled over this dice roll again and again and again.  Now the dice have been collected by a noted oncologist, packed away neatly, and stored in the Hopkins medical cabinet.  It's no longer a question of making the right decision.  There is no decision to make ... and I am feeling pretty pretty good about that  :)

What now?  Well, Joe hopped online as soon as we got home yesterday looking for a family New Year's getaway (the Bahamas seem to be the leading option).  Megan continues to plan her winter term of research and family time here on the East Coast.  Our hoped-for trip to see Joe's mom at Christmas time seems to be on firm ground.  And ... I am contemplating when I can get back to work.  Mostly, I am resting, relaxing, and letting the no-BMT news sink in.  "Watchful waiting" is not necessarily my strong suit but as an over-achiever I will do my best to watch and wait with calm and grace.

First Consult at Johns Hopkins: Let's "Change Things Up"

Friday - November 23, 2012

Joe and I are heading up the interstates before dawn on Friday for our 11 a.m. meeting with our new Hopkins oncologist.  Here's my Thanksgiving appreciation for all of the professionalism, finesse, knowledge, and instincts of my medical team and my sincere wish for continued good fortune and a clear, smooth path ahead into 2013 (or at least next month!) ....

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Joe's summation of the meeting's take-away message

Ten hours round trip with no traffic, brilliant skies, and some very interesting conversation with the Johns Hopkins lymphoma specialist.  After interviewing me to fill in some blanks in my treatment history, confirming that I was visiting as a precursor to a BMT, and then giving me a physical exam (still no palpable lymph nodes - nope, not even in the groin no matter how hard they press), the oncologist started our meeting in the consultation room saying, "I'm going to change things up."   Right then, I knew he was going to advise against a bone marrow transplant and shifted - quite literally - to the edge of my seat.

Dr. Ambinder confirmed that I had responded extremely well to my (very appropriate) Hyper CVAD protocol.  Given clean PET and MRI scans that showed no tumors, he feels that a BMT with its inherent infection risks and graft-versus-host-disease dangers might not provide me with the best outcome.  He explained that up until very recent years, JHU might have referred me for transplant at this point in my treatment but that their current thinking is to "watch and wait," to avoid the dangers of BMT when patients have responded this well to chemo, and to be ready to go forward with transplant when / if the lymphoma relapses.  In my case, when pressed (as we of course DID press) to lay out odds, he hazarded a 50% chance of relapse.  In case of relapse, the R-ICE protocol is available.  He also said that there was the "possibility, if not the likelihood"  that I might be "cured" (love that word!) and that to go through a risky and debilitating BMT without need would exact a heavy toll on me physically.  Dr. Ambinder then cited my liver enzyme numbers as evidence that "there are limits to what our organs can take" and that a BMT hinges on enormous doses of chemotherapy.   AND he reminded us that a transplant is no guarantee against relapse.  Dr. Ambinder advised that this course of "watchful waiting" would include CTs and MRIs every three months and regular bloodwork.  He did not see the benefits of continuing the high-dose methotrexate since I am no longer "bridging" my time until transplant and since my liver is in distress ("organ failure" = not cheery words).  He'll consult with Dr. Perkins on Monday.


So we are drawing breath and processing information.  Joe and I have been wrestling with the question of whether to "sit tight" or to pursue a transplant for months.  What are the odds?  It's a hunch either way; there are no guarantees and we will never know if we made the correct decision at this fork in the road if I have a poor outcome.  Having another consult is invaluable and - let's face it - Dr. Ambinder is the gatekeeper to the Hopkins BMT and his recommendation is key.  Our decision-making process just got a little easier  :) 

I am heartened by some numbers, namely that a Hopkins' mini-haplo BMT carries only a 7% mortality rate.  If it comes down to it, those numbers are much less terrifying than the standard allo rates (20-25%).  I am feeling somewhat "settled" that the chemo might be at an end - for now.   I'm also feeling "positive" to the extent that the mysteries of lymphoma allow.  "Positive" is fine for now.  I'll also profess to feeling "satisfied" with and "grateful" for my treatments and my medical team.  And my family and friends  ....

Enormously Thankful

Thursday - November 22, 2012

A happy Thanksgiving with my boys!  Joe, Jonathan, and I enjoyed a holiday turkey lunch at the Trellis and then ambled through Colonial Williamsburg, soaking in the sun and the fresh autumn air.  It was bustling on DoG Street today!  "Make way, sir!" the colonial re-enactor called to Jonathan as her historic technology (horse and carriage) almost intersected with him - thoroughly absorbed, head down in his modern technology (droid).  The balance of the day will be quiet, filled with chores (laundry, mending, cooking), football, a pasta dinner, and a touchbase with Megan and the Alzamoras celebrating together in Colorado. 

Jonathan returns to Blackburg tomorrow as Joe and I hit the road for our daytrip to Johns Hopkins and my initial consultation for the haplo bone marrow transplant.  Today, I am again pampering my liver by supplementing my already epic levels of water consumption and channeling positive thoughts towards my troublesome enzyme levels.  I am interested in hearing if these levels will torpedo or just postpone future methotrexate infusions.

On this Thanksgiving with Jonathan's latest visit drawing to a close, I am enormously grateful for the company of my husband and children and for the support of all of my friends and family.  It has indeed proven to be true that "the greatest healing therapy is friendship and love."

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Take Off!  An Ammirati family tradition!  We used our old school / dated / original board (USSR, South Yemen, Bonn and Berlin both as capitals), I rolled doubles like the dice were loaded, Jonathan sent planes back to Hawaii with regularity, and Joe ... won! 

Oh, Those Interfering Liver Enzymes...

Wednesday - November 21, 2012

All good things come to those who ...

Well, we had planned for me to be in the hospital beginning Saturday for my 3rd round of high-dose methotrexate BUT today's blood test showed that my AST and ALT counts have increased 50% in the last five days.  This increase is on top of already elevated levels so my next hospitalization is NOT being scheduled until my numbers are down, indicating that my liver has recovered from the last methotrexate infusion and is ready for the next onslaught.  Jonathan and I did not wait at Dalton for the "thumbs up / thumbs down" decision and got the word from one of my RNs by phone when we returned to the house.  I will go back on Monday for another blood test but will not be admitted on that day and may not go into the hospital until the end of the week at the earliest.  So what do you do to reduce rather startingly high AST and ALT numbers?  You wait for the liver to heal itself.  With time, the liver should recover and the enzymes should decline.  I just need to wait ... it ... out.  THAT, I can do; I've been practicing  :) 

Stronger Every Day

Tuesday - November 20, 2012

Gray but mild, today has been a relaxed opportunity to tie up loose ends, forge ahead with projects, and just hang with Jonathan.  Joe met us for lunch at Nawab, our favorite local Indian restaurant.  This visit reinforced my physical gains in the last three months.  Eating at Nawab with Megan and Joe at the end of July, I was unsure enough of my footing that the buffet posed a daunting challenge and I recall leaning on Megan as we traversed the parking lot.  Today, I am strong enough to rely on my physical capabilities without hesitation.  I can trust my strength and stamina ... and that is indeed a wonderful thing!

Limbo is NO Fun (the Status not the Dance)

Monday - November 19, 2012

Battling a sense of limbo, I look forward to this week's medical appointments.  Wednesday's blood test at Dalton will determine if I go in for hospitalization #13 on Saturday;  Friday's initial meeting with my new Hopkins oncologist will determine a LOT.  Is a haplo BMT guaranteed? a done deal? Am I truly in and admitted to the program?  (I believe I am but it will be a relief to hear the news from a physician in a face-to-face meeting rather than from an administrator over the phone.)  So, what additional tests are necessary for the kids?  Can these tests be done outside of Baltimore or must we wait until they are both out of school and available in mid-December?  Totally do-able, of course, but we want to get moving in whatever direction we are going! Then what?  When do my preliminary tests begin?  When might the actual plan of treatment begin?  When, when , when?

Oh, I love to prep and plan and anticipate!

I am a person who thrives on structure and schedule.  I love to plan and anticipate - often years in advance when it comes to Joe's proposed work assignments or our family travel.  Drop-in visits?  Unexpected changes in routine?  Ummm ... not exactly part of my innate nature but often a happy surprise - Alison's Thanksgiving visit a few years ago comes to mind!  SO, I am trying to focus on these cheery examples of spontaneity and embrace the stretching of my comfort zone that this "lack of next steps" necessitates. 

In the interim -- as I count down first to Wednesday ... then to Friday -- I continue to be happily engaged with my never-ending digitizing project and with being with Jonathan!  Contentment is ... baking for Jonathan while listening to "Morning Edition."

November's Tandem Birthdays

Sunday- November 18, 2012

Picasa, Picasa  ... where would my scanning be without you?

My family has two pairs of tandem birthdays:  Megan and Carolyn share a July birthday and my sister Rachel shares her November 18 birthday with my Aunt Virginia.  Being somewhat of a numbers geek, I have always loved the idea of the shared celebration AND I am grateful for the opportunity to reminisce about the nurturing, down-to-earth, and humorous presence Virginia had in the Carter siblings' lives.

This year, Rachel is marking a milestone birthday!  I was so excited this week to dovetail my photo scanning project with her birthday and to finally start uploading our family archives up onto the web for general access and use.  Finally, a small part of the print part of this digitizing project seems to be reaching an end point; I have almost finished the "loose" photos - as opposed to the photos in albums which are derived from negatives.  So, next up are my film negatives and my new negative-specific scanner :)  Soon!

Today has been a lovely, quiet yet productive day.  Gina and I had a terrific catch-up over brunch and then I came home to my computer, Picasa, Winkflash ... and football!  Having Jonathan home is an amazing treat,  enjoying RedZone with him is very good fun, and a Redskins win is icing on the cake!

My energy remains high, my strength is growing, and other than dry skin and eyes I believe I can say I remain comfortably symptom-free  :)   Of course, the hard evidence of a clear MRI makes everything even better!

A Saturday of Common Satisfactions

Saturday - November 17, 2012

Today is a workday for Joe but some harbingers of an autumn weekend are still in evidence:  Scott Simon on Morning Edition, an absence of school buses driving past the house, and Hokie football on the television as I work at chores and projects.  I slept long and deep last night after a few days of disquiet and frayed nerves.  Today's baking, cooking, scanning, sorting, recycling, and page protecting are all a little happier with Jonathan in the house  :) 

"Friday News Roundup"

... but without Diane Rehm (... an aside for my fellow NPR afficionados out there)....

Dalton Clinic was - literally - empty of patients when Jonathan and I arrived at 1:30 on a Friday afternoon!  As a result, we moved right through the Dalton dance (registration, port access, blood draw, vitals, pre-medication) and got into the treatment room very quickly.  Even the consultation with my oncologist was streamlined when he met with me in the treatment room during my Rituxan infusion.  I was very very relieved about the news of a clear MRI.  In fact, the MRI showed marked improvement in the small "not-to-be-alarmed-about" area of "healing" that has been monitored in my left cavernous sinus since July.  I have no clue why was I feeling so skittish about the MRI this time but I was certainly worked up.  Having Jonathan's company was a huge support.  In terms of my blood work, the two liver enzymes (AST and ALT) that were elevated during my last hospitalization remain high and may postpone next week's hospitalization.  "The mechanism of liver injury with methotrexate is believed to be direct toxicity;"  my kidneys are not the only organ taxed by this high-dose methotrexate regimen.  I will return to Dalton on Wednesday for more blood work to determine if my liver enzymes have declined and if my liver is recovered enough for another chemo onslaught just a few days later.

On the Hopkins front, next Friday's appointment is confirmed.  Because this news was left on the answering machine, we're unclear about whether the insurance issue was completely cleared up but I'm assuming the answer is "yes."  Why go ahead with an initial consultation if we couldn't continue on with the haplo?  Phew.  Another moment of uncertainty and frenzy - resolved.

A Frenetic Morning + A Relieved Afternoon

Friday - November 16, 2012

Or is it a "frantic" morning?  Hmmm....  I'm not sure ....  I had a tossing-turning night (from nerves?) which somewhat depleted my "steeliness" reserves and then I got a phone call from Marla, my contact point at Johns Hopkins.  Uh oh.  Why is Marla on the phone?  She shared that the oncologist's office may in fact be closed the day after Thanksgiving -- oooookay, I can roll with that (but why is this info still up in the air one week prior to the date?).  Then she asked for copies of my insurance card because the oncologist, in reviewing my files and seeing my prior authorization for a BMT in Richmond, wanted to confirm that treatment at Johns Hopkins was indeed authorized.  Yes, on Wednesday I confirmed with an actual human being at Blue Cross Blue Shield that my BMT authorization extended to Hopkins even though it was originally issued for VCU.  Yes, I confirmed that this oncologist was in-network.  Yes, it is Open Season and we can upgrade our BC BS plan as necessary.  Yes, everything seems fine on the insurance admin front ... but I am on edge.  Add to that a computer crash as I tried to scan my card, sweating as I ran around (is it really just sweat?), and a FAX machine robo-calling the house ... and I have had a weird, discomfiting morning.

BUT ...  Jonathan is currently on 64 on his way to Williamsburg.  The imminent arrival of your child has a calming, soothing, healing, positive effect....  Off to Dalton just after noon to meet with my oncologist.

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Phew .....  my MRI is clear.  I can draw a deep restorative breath.  I still don't know why I have been so nervous....  Jonathan is here with me as I get my Rituxan infusion.  We'll be home for dinner.

The Garden Path Leads to Baltimore

Thursday - November 15, 2012

 Massachusetts General's algorithm to select donors for patients w/o HLA-matched sibling

So yesterday heralded a shift in attention and treatment from Richmond to Baltimore.  I am still somewhat caught between two medical centers and two oncologists.  The handoff has not yet been made effective and I will be meeting with Dr. Perkins tomorrow at VCU to review last week's MRI and to have a Rituxan infusion in preparation for a Nov. 24 VCU hospitalization for high-dose methotrexate #3.  In between these next two VCU events, I meet with Dr. Ambinder at Hopkins to review my cancer, treatment to date, and a pending haplo transplant. At this Nov. 23 meeting, we should get a clearer idea about schedule and specific next steps.  Hopkins is in the forefront of haploidentical treatment in the U.S.  This transplant is a type of allogeneic BMT that uses a half-match rather than a full-match donor.  Either Jonathan or Megan will be my half-match.  They both are 4 of 6 allele matches and further analysis will determine who has the best profile for transplant in terms of latent viruses that might prove dangerous in a foreign system (mine).  Yes, the survival rates of an allo transplant - let alone a haplo transplant - set my teeth on edge but medical consensus is that haplo is my best option for long-term outcome.  Megan explains the procedure in more detail on her blog. Hallelujah for Hopkins letting me through the door and for my family providing me the logistical and emotional support to make it happen!

Tomorrow's VCU appointment has me in a less-than-sanguine state.  I still feel full of energy and asymptomatic but any time that I come face to face with an MRI report (or biopsy or scan report), I never take anything for granted and gird myself for less than perfect news. Joe cannot come with me tomorrow but Jonathan is coming home from VA Tech for Thanksgiving break sometime in the next few days and we may in fact meet up at Dalton tomorrow for my meeting with the oncologist.  I always appreciate a supportive presence during these meetings.  In April, those initial phone calls pointing towards lymphoma were delivered to me in my classroom after school.  I remember returning the call to VCU's head of internal medicine as I sat at my guided reading table with the classroom lights off because of my migraine and one eye patched to allow me to see without double vision.  When he told me that the CT scans showed inflamed lymph nodes, indicated lymphoma, and that he had scheduled a surgical biopsy, I discovered that I was not unhappy to be alone to process the information... before I phoned Joe ... before we told the children....  "You seem very calm," I remember Dr. Edmund said at one point.  I replied that I thought I would only be really upset if I could have acted sooner; he kindly replied that I had certainly been aggressive in seeking a diagnosis and treatment for months.  Anyway, this long tangent is meant to surface my nerves when getting any subsequent results.  Any time I sweat or have a twinge of headache, I experience some residual concern.  Am I just hot ... or has the lymphoma returned?  Is the MRI pounding around my head for an hour causing this headache ... or has the lymphoma returned?   Fingers crossed for continued good news tomorrow afternoon.  My stomach is a wee bit queasy with nerves....

I'll take strength as I remember getting the definitive DLBC diagnosis (via telephone) with Carolyn by my side, hearing PET scans and MRI results with Joe firmly next to me, having treatment at Dalton and up on my favorite hospital floor with Megan, Jonathan, Joe, Carolyn, Sally, and Rachel all right there to back me up, and having so much positive energy and prayer from so many friends around the world.  Thank you!

Of Page Protectors & a Scanner (& Hopkins visit #1)

Wednesday - November 14, 2012

While awaiting news from Johns Hopkins, I remain immersed in my project of digitizing and scanning the family archives.  Intellectually, I understand that this task is indeed finite but WOW does it seem infinite.  I am working forward ... crawling ... plodding ... toward that glorious watershed date of August 2003 when we went digital.  Prior to that date, I am methodically going through the photo albums, the correspondence, and the schoolwork -- selecting, weeding, scanning....  A cheerful refresher of all of our tremendous adventures as we moved from Arlington to Beijing, to Falls Church, to Taipei, to Hong Kong, back to Arlington, to Manhattan, and then back to Arlington!  When I find a loose photo, I am assisted by these changing locales as well as the state of the children's front teeth!  I am simultaneously scanning any Carter family photos that are somehow in my possession with the goal of uploading them to a shared family account.  This exercise is more than a bit addictive however the wide eyes and fixed gazes of the hounds have dislodged me from the scanner and gotten me out for some fabulous autumn walks.  Another crisp fall day to relish the vivid colors and soak up the sun.  Life is good!

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GOOD NEWS! Johns Hopkins has said yes. It feels a bit like I have been invited to the Haplo Bone Marrow Transplant prom. Now I am diving into the insurance abyss to make sure that everything is covered (and that we don't bankrupt ourselves)....

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And....... after much internet scrambling and telephone work by both Carolyn and myself, I have insurance clearance for a BMT at Hopkins AND have found an in-network lymphoma specialist at Hopkins ... with the result that ... my first consultation with this oncologist is next Friday (the morning after Thanksgiving).  This ball is rolling!

My Ears Are Burning

Tuesday - November 13, 2012

Lucky Tuesday the Thirteenth, perhaps?  Well, my medical files are being reviewed today by a panel of physicians at Johns Hopkins and I am feeling lucky.  At this point, all I can do is project positive energy, remain hopeful, and wait.  To keep well occupied, I am almost frenetic with multiple strings of activity - baking, cooking, scanning, making cards for the kids, and trying to get my rain-averse short-haired hounds out of the house on a blustery day.  My VCU oncologist has just confirmed that I can postpone my next hospitalization from the 19th to the 24th thus allowing me some downtime and relaxation at home with Jonathan and Joe next week.  With Megan enjoying family time with the Alzamoras, now, THAT'S a Happy Thanksgiving!

Firming Things Up

Monday - November 12, 2012

Dotting "i"s and crossing "t"s seemed to be the order of today.  I did what I could to firm up anything medical that is in my control, confirming that all necessary documents had been received at Hopkins and nailing down Friday's appointment at VCU's Dalton Clinic.  On Friday, I am meeting mid-afternoon with my oncologist to review the results of last Thursday's MRI and then getting another infusion of Rituxan in preparation for my next hospitalization for a third round of high-dose methotrexate.  The date of this next hospitalization is still up in the air.  I am scheduled to enter the hospital one week from today and to be discharged on Thanksgiving (morning? afternoon?) BUT Jonathan will be home during that time and I am loathe to miss any time with him.  Of course, he could hang out at the hospital as he and Megan have done in the past but - let's be completely honest here - it is MUCH better family time at home.  The appeal of the oncology floor is limited - especially after a dozen hospitalizations!  I have asked (very politely) if I can be admitted on Saturday Nov. 24.  The attending physician from my last hospitalization indicated that this would not be a problem at all however we'll see what the official word is from my oncologist.  I may have the answer tomorrow!

I am completely captivated by the York.  The hounds and I enjoyed a long, sunny walk along the river this morning.  It's restorative.

To the Eagles' Nest

Sunday - November 11, 2012

On another warm, bright, glorious day in Williamsburg, Joe and I took full advantage with a long morning walk with the hounds.  Instead of enjoying our route down to the York, we set off through the woods.  This route winds alongside the mill pond and out towards an eagles' nest clearly visible from the path.  No eagles were in sight today nor were the flocks of Canada geese and cormorants we had encountered last Saturday.  Sadie was on high alert for any waterfowl that might cross her path but it was a quiet, still day all around.  I think this walk may mark my longest outing since ... December?  Headaches?  I definitely feel that my strength is building steadily and that my body, blood, and bone marrow are showing tangible recovery from the chemotherapy.  I am certainly in a better physical condition to endure a bone marrow transplant now than I would have been for the original mid-October timetable.  And I hope this strength contributes to an easier procedure and sunnier prognosis.

A Sisterly Staycation

Saturday - November 10, 2012

Carolyn's visit has whizzed past and I am so very very sad to be driving her to the airport in the next few hours.  Unlike her long visit this summer, I was much more functional and energetic this past week;  we have not been bound to the house with me crashed on the couch, healing up, letting the chemo do its work.  So, yes, Carolyn was exactly right - we could have fun this visit rather than just be mired in the repercussions of cancer.  Films, walks, books, meals out, the election (!), the election post mortem (!), and discovering long-lost, dead-on family correspondence kept us highly amused and happy.  We also managed to knock successfully on Johns Hopkins' door thus developing some (vague) outline of (possible)  next steps.  Our previous sisterly getaways have included Taos and Santa Fe, Chicago, the Florida Keys, Sanibel, and L.A..   This lovely, nurturing week was our first sisterly staycation.  Where will we go next?  Baltimore?  :)

A Full (and Normal) Friday

Friday - November 9, 2012

Today was a full and happy completely non-medical day with my fabulous sister.  I have shifted from my photo project to sorting through each and every last storage box in the house and dumping, sorting, and enjoying some forgotten moments.  Hurrah for saved correspondence and notes from the kids!  Lots of fun!  Carolyn and I also relaxed with a long sunny dog walk to the river and saw "Flight" - my first film outing in ages!  Now we are off to the airport to pick up Joe - back from his travel.  

Just a thought as I come back from an outing in the outside world.  I sometimes feel SO normal that I forget that I'm ill.... or dealing with illness.  Visibly ill.... or visibly dealing with illness.... And then I catch someone's double-take as they register my scarf and lack of hair and then process at some level:  "cancer."  It's hard to go under the radar and feel completely normal when you are so visibly and publicly marked.  Ah well, today felt exhilaratingly normal.  Normal tasks.  Normal energy.  Normal day.  I feel wonderful!

Medical Records and MRIs

Thursday - November 8, 2012

Wwwwhhhhoooossssshhhhhhhh .....  things are moving FAST ...  at least for the moment :)  This morning Carolyn and I are following up on yesterday afternoon's first contact with Johns Hopkins.  Carolyn actually telephoned Hopkins' New Patient Referral line from the car on the way to see Sally in Virginia Beach, expecting that we would simply leave a callback number.  Instead, she was transferred directly to Medical Oncology where the proverbial ball was set rolling.  As the call progressed, we asked about a possible timetable and the answer was ... Tuesday.  Um, say what?  Yes, on Tuesday a physicians' panel will meet to review my medical records and determine whether I will be scheduled for more meetings, tests, and treatment.  The scramble is on to get my medical records faxed north.  After last August's circus in getting medical records faxed to Univ of MD, we are on the alert!

Luckily (?), we can follow up on the medical records faxes in person this afternoon in Richmond.  My fifth MRI of this calendar year is scheduled for 2:50.  This test is again targeting my head and orbits, looking at that left sphenoid sinus - the source of all those months of pain and poor function! My canary in the coal mine!  My first alert to lymphoma!  We hope once again to find nothing...  nada...  nil...  zero....  

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Update #1:  Carolyn is right:  you have to do it yourself.  My VCU BMT coordinator phoned (from home on her day off) to say that she had NOT yet made contact with her counterpart at Hopkins.  If I had waited for Angela to make contact, I would not have been discussed next Tuesday.  Just by circumstance, we would have missed that deadline.

 Update #2:  Carolyn is right:  you MUST do it yourself.  We have vanquished voice mail systems and sorted out the division of labor and gotten the medical records faxed to Hopkins.  Confirmed with Hopkins:  they have been received.  Boo-yah!

A Clearer Path ... but NOT to VCU

Wednesday - November 7, 2012

Chasing down the options

Election Day brought results in the morning here in Williamsburg - at least in terms of my pending bone marrow transplant.  My VCU Bone Marrow Transplant Coordinator telephoned with the news that the final word is that I am NOT eligible for the clinical trial.   I confess to some frustration that the VCU BMT team had offered this trial as an option.  I heartily applaud their enthusiasm and their desire to provide a path and treatment option for me.  However, I wish that they had engaged in some serious "close reading" (a focus emphasized by my favorite Comparative Lit instructor) before approaching me and offering this trial as an option.  Kim and I - two laypersons - read the eligibility criteria and surfaced language that clearly excluded me from the trial  -- that is, I have not failed my chemotherapy protocol.  In our BMT meeting ten days ago, I pointed out this specific language to the doctor who was still enthusiastically advocating the trial as a viable option.  When we examined the pesky "and" that was thought to be an "or", he remained optimistic and felt that a wording edit could be quickly engineered.  It turns out that it is not to be.  Our BMT path has run dry in Richmond ....

... and veered north on a path to Johns Hopkins in Baltimore.  My Bone Marrow Transplant Coordinator is now contacting her counterpart at Hopkins to get the ball moving for a haplo transplant, a procedure in which the Baltimore hospital specializes.  The physician we met with at UMD for our second opinion also pointed us towards Hopkins for a haplo BMT.  We have considered this option previously and envisioned that I would simply camp out in Baltimore as needed with Megan (back from California from mid-December until late March) as my companion / caregiver.  Joe and Jonathan seem very far away under this scenario but it would only be for a few months and we have to go where treatment is offered.

I'm still wrapping my head around this narrowing of options.  Thank God Carolyn was here with me or I probably would have given in to more high pulse rates and cortisol flushes.  Joe's support and positivity were conveyed strongly through the phone but still he was on travel - a long way away.  Having Carolyn alongside me was a tremendous salve.  My most immediate thought was:  how do I share the updated information with Jonathan and Megan?  Eventually, I phoned them after their obligations for the day had been completed.  My children are amazing people.  I feel so comforted and happy to know them.  How could I be anything but optimistic?  Even when the path shifts....

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On our way to a wonderful visit and lunch with Sally, we made our first contact with Johns Hopkins.  Very helpful.  Surprisingly quick timetable!  More details to come ....

Election Day: More Waiting!

Tuesday - November 6, 2012

Baxter cuddling with Bunny

Waiting is a cancer patient's forte!  We wait at clinics, for test results, to see our bodies respond to the assault of poisons and other treatments, to see our hair fall out and then to grow in, to get a definitive answer on ... what happens next ... when we are in the clear ... when we no longer need to wait ....  So today's Election Day wait seems like a walk in the park!

Another relaxed, cheery asymptomatic day  :)   Baking a family-favorite nusstorte for my two cherished college students, penning some notes with photos for those same amazing children, writing a short paper on the Enlightenment for Coursera, and keeping warm with the hounds by the fire.  AND, I'm still in my pajamas!  Why not?!

Waiting at Dalton ... + The Poignancy of Pumpkin Boots

Monday - November 5, 2012

The Dalton Clinic is packed this morning ... So many people in pain, fear, and grief but some smile and good cheer is always on display.  The VCU staff is amazing - connected and caring.  I have had my blood draw and my vitals and now Carolyn and I wait ... and wait ... and wait.   Hooray for iPads!

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Home from Richmond!  Carolyn and I lunched at Burger Bach, picked up sundry items at Ellwood Thompson, and then came home to some very excited hounds.  Now after a dog-cuddling, sun-drenched nap, I am ready for a walk, some baking, and a relaxing evening with Carolyn.

Cheery boots that will stay in my mind

My blood work remains strong and I must confess to relief and a sense of ease when I see three-digit platelet counts.  A sense of ease and normalcy .....  Somehow today witnessed a more intense, more dire, and rawer view of cancer treatment at the clinic.  Amputations, tracheotomies, weak bodies slumped in wheelchairs, and a gentleman with profound loss of tissue and bone in his upper and lower jaws.  Yet even in the midst of this evidence of tremendous pain and loss, so much positive energy shines through.  When I remember and hold in prayer the gentleman with the severe facial surgery, I will recall his pleasure in being with his wife and their two vibrant pumpkin-booted toddler grandchildren, how he pushed the boys in the wheelchair (intended for his own use), and how he pressed on with living and loving and enjoying his day (in the Dalton clinic) with his lovely family. He looked so incredibly uncomfortable ... and yet so happy.

Megan's New Blog: A Caregiving Chronicle for BMTs

Let's Start at the Very Beginning

"At the risk of sounding like a new member at a meeting of Cancer Caregiver's Anonymous, let me begin.

Megan's May 2010 graduation weekend

My name is Megan. My mother will be receiving a bone marrow transplant for her Stage IV DLBC Lymphoma this winter.

Well, now that that formality is dispensed with, let me get to some of the more interesting details about my purposes of writing this blog. Some of the sources that have been immensely comforting to me during my family's "journey" with cancer are blogs from fellow patients. I've clicked through the entries that cataloged everything from their various drug regimens to their day-to-day insistence on enjoying life. I'd like to contribute to that body of knowledge that has done so very to reassure and educate me with a particular focus on those younger caregivers who find themselves occasionally switching roles with their parents."
Megan offers a different perspective going forward on our BMT journey at:

http://pithandmarrow.blogspot.com/

Change of Season

Sunday - November 4, 2012

Falling back into autumn and enjoying an extra hour of time with Carolyn!  I am conceding the change in temperature with a shift from scarves to wool hats whenever I go outside.  Being hairless is cold! 

Carolyn and I have enjoyed some long walks with the hounds, good warm food to counter the brisk autumn air, and a marathon session of "Call the Midwife" in preparation for tonight's season finale.  Carolyn has commented that my energy is definitely greater than it was when she last saw me in July!  Absolutely!  The lymphoma is gone!  Let's just keep it that way  :)  

Companionship is Key ...

Saturday - November 3, 2012

A walk to the mill ponds rather than the York.  Beautiful!

... to keeping me alert, engaged, and happy.  At my core, I am truly a social animal; ENFP personified.  Currently, in this amorphous waiting period in my lymphoma treatment, I do think that I might be more likely to obsess over numbers and to drift into a dark space if left alone too long to contemplate, to think, to conjecture.  So when Carolyn first suggested coming east while Joe was away on a week-long business trip, we transitioned quickly from a discussion of my current high function healthwise and ability to go it alone to the fact that during this visit we could simply focus on enjoying each other!  While fun with my sister is to be relished, I think her visit is most appreciated because her presence will also be a talisman against possible brooding and the blues.  One week alone with the hounds might have warded off even my cheeriest instincts.  I am thankful to Dan and the kids for once again adjusting their entire family schedule and routine to make this sisterly week happen!  Joe and Carolyn will just miss each other at the airport this afternoon but are planning to engineer a hand-off of the car so Carolyn can drive herself down to Williamsburg.  I am making some homemade broth and soup for a cozy autumn dinner!

Regaining Strength at Home

Friday - November 2, 2012

Blooming zygocactus? Thanksgiving is soon!

As appears to be a pattern, when I arrived home from Richmond yesterday, I immediately crashed on the couch.  Not even stopping to take off my coat, I greeted the frantic hounds, grabbed a blanket, and slept (deeply, fully, completely) stretched out in the living room for almost 3 hours.  Joe and I had enjoyed a late lunch at Station 2 after leaving the hospital so I slept through the dinner hour, awoke for a few hours of interaction and function, and then bedded down upstairs on the Tempurpedic for another 9 hours of blissful rest.  So am I awake and perky today?  Well, not quite ....  I am still dragging in terms of sleepiness and physical energy.  Still, it is an injection of energy to be back home and after forcing myself to get up and out, the hounds and I enjoyed a walk around the neighborhood.  Crisp fresh air, bright golden leaves, and birdsong have all jumpstarted another day of relaxation and recovery.

Kudos to Kidneys

Thursday - November 1, 2012

Joe wins Scrabble.  I win the blood level bet.

It's funny how a dose of silliness can forge connections across roles and add some energy to the mundane.  Yesterday, Joe and I had some fun going on the record with predictions of my Halloween methotrexate level (J=0.13, C=0.08) and sharing these projected levels in our discussions with nurses and doctors.  Well, when the level came back BANG ON with my prognostication of 0.08 (I'm the winner - ding ding ding!), everyone came through the door with a little more zip in their step to share the news.  "You won't believe the number!  "You won the bet!"  The oncology intern just came in laughing to discuss the number thus marking day #2 of this revelry!  Being so close to the mandated "untraceable" level of 0.05, today's blood draw will be moved up earlier to 11 a.m. with the thought that I can get home by late afternoon / early evening!  Hurrah for my stupendous kidneys!  They are working OVERtime.  I am trying to do my part, pushing aside the standing desk for today and putting my feet up to minimize edema.  With massive amounts of fluids flushing out this methotrexate, I can see the effects in my legs and in my potassium levels (I am once again on supplements).  Time to just sit down and help my kidneys out.

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1:30    My superlative chemo-purging kidneys have come through for me AGAIN!  Once more, they have cleared this even higher dose of methotrexate by day #4 and I am headed HOME!!  Bravo!  I love my kick-ass kidneys ....