Still at Home! NOT in the Hospital :)

Sunday - August 5, 2012

Oh, I had a few moments yesterday where I felt a chill, quickly grabbed a thermometer, and waited for the ominous high-pitched / high-temperature alert beep with a feeling of dread in the pit of my stomach. Thankfully my temperature remained steady and I am STILL HERE -- at home and NOT in a hospital!  Small, important victories!  Okay, I was indeed up at my 4 a.m. dexamethasone-induced call to wakefulness but I'll take it!  Better here than in a less-private, dog-free hospital with my port accessed, indifferent food brought in on a tray, and Joe anxious about negotiating his way from work to visit me and keep me good company.   I am thrilled to remain at home!

Physically, I continue to be in a better place than my last odd round of Hyper-CVAD.  I have learned to manage my elevated heart rate and to accept my curious lack of large-muscle function.  At one point yesterday afternoon, I thought that I might heed medical instruction and follow my deep desire to accompany Joe on a walk with the hounds.  No dice.  By the bus shed in front of our house (50 yards away?), I had to turn around.  Heavy breathing, elevated pulse, and simply no strength in my legs ... did me in.  I'm accepting my limitations and acknowledging that this phase will pass.  I'm not sure when ... but I am hoping to regain some oomph by mid-week?

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Joseph and I felt like capable risk managers and took my few neutrophils out for breakfast at Food for Thought - a favorite local spot but our first breakfast visit.  I avoided touching anything common at the restaurant - handles, chairs, menus, table sets - and at our subsequent quick supermarket stop.  When I inadvertently touched a cart handle, I ran for the disinfectant towels to wipe my hands.  What a change in my world view!  I still have not spiked a temperature so... success!

A Neutropenic Weekend

Saturday - August 4, 2012

An expression of sibling love

While yesterday was a bit of a sleepy, napping day, one word DID make an impression through my fatigue-induced fog.  Kevin, my nurse practitioner deemed me - once again - neutropenic.  My white blood cell count is 0.4.  Not my lowest by any means (I have been at <0.0 "untraceable") but still low ... low ... low.  At this nadir, I am vulnerable to infections.   Of course, I am exceedingly aware that I have been re-hospitalized twice due to such infections:  seven total extra nights in the hospital due first to an ear infection and then, more alarmingly, an E.coli infection.  I am already on a schedule to be in the hospital for 27 nights under this in-patient Hyper CVAD chemo protocol, am contemplating a month plus in a Bone Marrow Transplant Unit, and do NOT want any extra hospital time due to extraneous infections.  Let's just say that I plan a VERY quiet, self-isolating weekend where I hunker down to avoid germs and monitor my temperature very carefully.  If Monday's upcoming bloodwork at VCU signals that the Neulasta shot has finally kicked in and stimulated some neutrophils, then I can loosen the reins.... maybe.  I really do not want to return to the hospital until my scheduled admission on August 14.

My plan to fend off cabin fever includes tackling a large backlog in my correspondence as well as some sewing projects.  Earlier in the week, despite my finger neuropathy, I got back on the sewing machine to help Megan with the "Tech-a-cotta Warrior" gift she created for Jonathan.  Hands-on work seems to ease my mind and to satisfy my need to do something.

Voyagin' West for Vincristine (AND Platelets)

Friday - August 3. 2012

Treatment Room

Am I obsessed with sleep?  I suppose so!  With tomorrow's start of a 4-day steroid, I am hyper-focused about resting up and getting ready for a repeat of early mornings.  Today, while disappointed not to bank more sleep time, I am up early enough to enjoy a magnificent red-orange sunrise illuminating nine deer seated sedately in the back yard!  Quite the compensation for not optimizing snooze-time.  Oh, I pulled out all of my sleep tricks before finally giving in, getting up, and heading downstairs.  The final decision came when I risked waking Joe by giggling to myself in debate over recent favorite quotes:  "Kiss my ass. This is a holy site" or "I do not like to work in groups.  Who does?!" (must be delivered with a Ukranian accent).  Time to start the day....

Joe and I are off to Richmond for Hyper CVAD odd-cycle's day #11 vincristine infusion.  Blood labs first and then the fast-as-lightning ten-minute vinristine infusion.  This protocol always engenders curiosity and admiration:  why day #11 and not day #10 or day #12?  How many clinical trials resulted in this particular timing?  So much research, medical effort, and human hope are the bedrock of each of these protocols.  My family and I are benefiting from all the people and work that has come before.  I am mindful, appreciative, and prayerful.

Yesterday, I set the wheels in motion for a second opinion at the University of Maryland's Greenebaum Cancer Center for my upcoming Bone Marrow Transplant.  Happily, my friend Betsy recommended a specific physician for a potential second opinion.  I feel tremendously relieved to have another expert medical opinion weigh in on the BMT options.  I also feel relief that I am not simply opening a webpage and randomly selecting a physician.  Having Betsy's personal connection is reassuring and invaluable.  The entry "paperwork" for Greenebaum is now complete (over the phone), a possible early September consultation date is penciled in, and procedures to forward my medical files are clear.  After next Friday's follow-up PET scan results have been read, I will ask VCU to FAX my file north and I will send off a CD with all imaging (bone marrow slides, MRIs, PETs).  Then Joe and I will actually get in a car, set our horizons beyond the Richmond intersection of interstates 64 and 95, and drive north for the second opinion.  As Carolyn has researched, second opinions are delivered in face-to-face meetings even when the physical examination of the patient is moot.  In fact, my initial consultation with the VCU Bone Marrow team could have been held over Skype given the lack of physical assessment that was needed.  Ah well, I will pack a thermometer, think non-neutropenic thoughts, and get ready for a road trip.

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It feels a bit like a lost day ....  My blood counts had dropped significantly since Monday so Dalton pumped me up with platelets before I headed home mid-afternoon.  Then, I crashed out DEEPLY on the couch for 3 hours before waking for dinner.  Day?  Gone!  That was fast!

"Sleep is the best meditation."

Thursday - August 2, 2012

"An" means "peace"

Eight hours of deep, full rest have restored some physical strength this morning.  In fact, I exited the bedroom and walked down the stairs without the need to hug a wall or clutch furniture.  This good moment brought home the realization that the chemo can really wipe me out.  Well, duh ... but sometimes I am lucky enough to forget the enormity of what's going on in my life....  If I revel in an instance of walls-free, upright walking then my baseline has certainly shifted, yes?  Yesterday, I was indeed hugging walls, pushing off of furniture, and taking stairs one at a time with long ... long ... pauses.  However, this chemo round has produced significantly less fatigue than my first odd round of Hyper CVAD and I am enormously grateful and relieved.  Megan suggested that the extra (surprise!) week of recovery from the E.coli infection braced and strengthened my system thus resulting in my improved stamina and physical oomph.  She could be right!  I am weathering this 4th of 6 chemo rounds with significantly fewer naps and only one moment of stuck-on-the-floor-can't-get-up lack of large muscle function when in another example of an appliance-induced moment of enervation, emptying the dryer bought me to my knees (literally).

A major emotional / intellectual challenge looms as the summer wanes:  how will I adjust to a free schedule and lack of outside goals as the beginning of the school year approaches?  Will I be able to maintain my equilibrium when school buses are back on the road and my peers are all busy in their classrooms while I gather my strength and heal on the couch?  How will I maintain my necessary focus on health when I am so distracted with the thought that I am NOT working?  NOT contributing?  NOT participating?

Well, I hope to be able to be smart and logical.  In the end, I am completely practical.  I want to embody the word "cure" as it's been used by my oncology team in reference to large diffuse b-cell lymphoma.  With this clear and unequivocal goal, I have no choice but to focus exclusively on letting the wonders of modern medicine do battle against the lymphoma that is "lurking" in my body.  My body and my schedule are the battleground upon which this battle takes place.  Yes, I will be chaffing at the bit to find some way to be of use, involved, and engaged.  But short term pauses in my current commitment level will make way for long term involvement in my community.  The only path towards this long-term, life-time goal is through health.  I need to heal.  I need to purge this lymphoma.  And if that requires me to sit in a small hospital room and grow someone else's bone marrow inside my body ... then that's what I'll do! 

Dreams of Jefferson Street (and the Start of Fatigue?)

Wednesday - August 1, 2012

On my first early morning in about a week, I awoke to the rustlings of thunder and a few whips of rain slapping the windows.  I feel quite well - no discomfort even from my twinge-prone lower back - but at 3:50 a.m. was fully and completely alert.  Sadie, wide-awake and attentive next to my elbow, could not lull me back to sleep (despite a few kisses) so I resorted to my tried-and-true method of "walking through" our family homes in an attempt to fall back into slumber.  Tonight, I enjoyed a nostalgic stroll through Jefferson Street, a home that we will sell this afternoon.

Other people might count the proverbial sheep in order to drop back into sleep; I focus my thoughts and eliminate distractions by walking through houses ... negotiating furniture placement, recalling paintings, conjuring up details, investigating hidden corners.  I can first recall such a dream stroll in my teens when I would lull myself back to sleep in the humid ( no a/c folks - it was the 70s and we just sweated it out) confines of my Connecticut bedroom by ambling through the Brussels house and Riviera boat that had housed me during my summer in Europe.  Over the years,  I have often returned to our snug Pimmit Hills bungalow, our Soviet-era apartment block in Beijing, the mists of our damp rambler on Yangmingshan, our fabulous aerie in Hong Kong, the breezes and space of the Upper East Side, and our comfortable, happy family home on Jefferson Street.  Today, our sweet Arlington home is being sold; the papers will be inked and the deal will be made.  Given that it's been almost three years since we packed out our nuclear home and fractured into our separate abodes, our lovely family home has already shifted its hold.  New paint and kitchen upgrades (for the tenants - not us!) have already transformed it into an unfamiliar reality.  But in my nighttime walk throughs, all is restored.... in floods of sunshine and vivid color (orange, red, lime, cobalt, yellow, and purple).  Happy, happy thoughts BUT ... I still couldn't get back to sleep  :)

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Sadie and Baxter show how it's done.

Some purging, some laundry, some packing (hospital "go bag" is prepped for August 14), and even some modest cooking and then WHAM!  I have been ambushed by chemo fatigue.  It has crept into my sunny state of busy-ness and kidnapped my mojo.  The GOOD news is that pressing obligations are few and far between for this project-focused individual.  Aside from a newly-discovered well of correspondence that has been funneled into my spam filter (thanks unsolicited AOL upgrade), my calendar can probably be cleared to allow a languid nap on the oh-so-comfy-denim-couch.   The hounds are great exemplars, modeling a coping mechanism to combat this chemo fatigue;  they have spent the ENTIRE day curled up and snoozing away. Given my lack of sleepiness, actual zzzzzs remain elusive but I shall do my best to emulate a dog's life.

Nearly Normal

Tuesday - July 31, 2012

Yesterday and today feel nearly normal.  Perhaps this normal is a good version of my re-calibrated / lymphoma "new normal" but maybe this feeling has a taste of my old pre-December "normal" when energy and ability seemed without strict bounds.  Yes, I'm still strengthening and working around this recent (surprise) ridiculous lower back issue but other than that?  I am sleeping VERY well and fatigue is virtually nonexistent relative to what I experienced after my first odd round of Hyper CVAD.  Bottom line:  I have energy and am thrilled to be enjoying time with Megan.  Splendid, happy days with my beautiful girl!  We even managed to have a little outing yesterday with some belated birthday shopping for Megan and a lunch.  Oh, and who drove?  That would be me  :)   Just a normal thing to do....

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Sewing projects, livestreaming REAL Olympics coverage (that shows some non-Americans, standings, and real-time results), "Idiot Abroad," lunch out with my girl, and then a round trip drive to Richmond to get Megan aboard a Skinny Dog to Washington DC.  A full, happy day.  Now, time to rest!  Normal, normal, normal ....

Pretty good ... for Neulasta #4 (and NOTHING more!)

Monday - July 30, 2012

Snorkeling scenes and pristine reefs instill calm at Dalton. 

.... pretty, pretty, pretty,  good....  Given yesterday's frozen and painful lower back, I was fully expecting to be stiff and perhaps immobile for today's trip up to Richmond.  We were discussing how I was to get into the clinic from the valet:  no wheelchairs in this journey - yet!  Now I'm up after a luxurious 6 hours of flat-on-my-back sleep and am sore but functional!  Better than yesterday!  Hurray!  So relieved ....

As foreshadowed by an oncologist last week, vivid nightmares roused me more than ever last night.  One of the Hyper-CVAD odd-round chemo agents seems to prompt dreaming and I indeed produced.  Dystopian sequences and separation from my children featured prominently.  Pretty stark imagery.  I do not need a comparative lit PhD to provide some insight into why my dreams surface anxiety and pain about leaving my children.  I may be honestly upbeat about how I'm feeling and where we're going with my treatment but my health does remain a concern. 

Megan will journey west with us for today's post-chemo Neulasta shot.  At this interval (after my first odd round or #2 of 6 protocols), I was deemed to be tachycardic, nailed for lack of hydration, and hooked up for an hour of saline at the clinic.  I am determined not to repeat this unpleasant surprise and am drinking up like a very good girl.

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"Matchmaker, matchmaker, make me a match  ..."

Our Dalton visit was about 2 hours from valet drop-off to scooting back onto the interstate to escape back home.  Two hours!  We still have a full day left in front of us!  Fabulous!  My blood levels are VERY good (for someone undergoing chemo) and my vitals were strong.  Happily, my heart rate remains below 90; no tachycardia (yet).  What a terrific way to start my 2 weeks at home!

Having asked for a week whether my bountiful blood draws were ever channeled toward bone marrow matching, I pushed again today and learned that this process had not yet started.  No worries ... what's another blood draw?  I'm a pro at this point. The process is now officially underway.  Megan had a swab test to begin her match process as well.

Crashing Out and Healing Up

Sunday - July 29, 2012

Often when I return from the hospital, I simply ... crash.  I drop on the couch, the dogs burrow in (while the cat haunts and whines for food), and unpacking and laundry goes waiting... and waiting ... and waiting....  It simply is not a priority.  Eating and cooking are also low priorities.  I am not hungry.  I am just SO happy to be home, comfortable and cuddling, that everything besides "hunkering down" goes by the wayside.  Yesterday, Megan and Joe made this recharging and centering even more rejuvenating.  All of a sudden, the day disappeared in a rush of dramatic rain and storm - wonderful!

My physical fatigue is definitely on the horizon.  When I head up the stairs, I feel my muscles debating me (must we? let's go slow or double step instead) and my heart rate also has a tendency to elevate - quickly!  I am on major warning about moving slowly and avoiding lightheadedness.  The great benefit of going through this chemo round a second time is that my expectations and precautions are clear.  I am more aware.  I am less worried as symptoms arise.  It all feels much more procedural.

Movement is key.  Megan and I shared a (slow) long walk with the hounds in the late afternoon.  Prior to my lymphoma symptoms, these pups were SO accustomed to frequent, long walks - down by the river, around the neighborhood, early morning must-dos, and post-midnight magical saunters.  They are very excited to get out with me on the other (human) end of the leash.

Great news regarding sleep! Six plus hours of rest!  No steroid effect yet  :)

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A huge wrench in my already modest plans;  I just threw out my lower back and am pretty well out for the count.  The irony!  Oh, how I love(d) my Arlington freezer-on-the-bottom appliance and have fussed for years about the inconvenience of living in rental homes where I open the fridge -- and see NOTHING!  I open the fridge but my head remains in front of a closed freezer door and I am required to bend over and dig out food from the fridge at a level below the shoulders.  This design is an ossified holdover from a previous technological necessity.  Why does this relic prevail?  How is it still being sold?  What's the point?  Anyway, this most-vilified appliance finally got its due, revenge for my mocking and rants over the years.  When I bent down to retrieve yogurt from the lower shelf of the fridge (just above FLOOR level of course), my back ... went .... out.   I have been forced to cancel my brunch with Sally and mom and am trying to stabilize my back and reduce the spasms. Drat you, fridge.  At some point I will be back in my own home and will have a fridge that makes sense!

Unexpected.

Pre-noon Bust-Out?

Saturday - July 28, 2012

Olympic viewing before bed

You know....  some days just do not go your way.....  I am now officially rebooting.....
I have been in a computer-induced RAGE for a couple of hours now which has now been topped off by a crash and a full delete of this morning's post.  Irretrievable.  Gone.

Ah, well.  Perhaps it's a cosmic message for me to focus on the positives and shrug off the previously posted raves about grammar.  I shall take advantage of this clean slate and recap the positives.

Megan's crashpad on the couch

• Good sleep!  Megan crashed on the hospital couch and I didn't wish to disturb her so I stayed in bed and dozed.
• I should get out into the fresh air by noon!  Hurrah!
• My steroids-induced puffy face and leg edema remain manageable.  Heartrate is going up (as expected with this chemo round) but I am not lightheaded.
• The internet allows you to feel companionship with other grammar police.  I'm not the only one who reacts to "your v you're" and "too v to" - good to know.

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NOTE TO SELF:  It is NOT summer time in the hospital; it is NOT spring time in the hospital.  It is COOL in the hospital.  I need to forget my capris at home and remember to wear long pants and socks.  My feet get cold every day and I end up wrapping my lower legs in towels, sweaters, or blankets as I elevate them to contain the edema.  This look is ridiculous and is not terribly effective.  Next go-bag?  Autumn-focused long pants and some cozy socks.  Gotta remember!

Kids on the Move! PLUS A Feast!

Friday - July 27, 2012

Was last night my most restful in the hospital?  In my fog of fatigue, I think back on my 23 days in the hospital and can't recall another night where I didn't bail sometime in the dark.  Instead, I maintained an eyes-closed, conversation-lite stance during all of my evening events and ended up napping throughout the night, finally arising at dawn.  Sounds like a successful evening to me!  I'll take it!

Nonetheless, I am seeing and feeling the effects of the dexamethasone (bloated face) and some reactions from four days of cyclophosphamide infusions (flushed / histimine reaction in the face and upper body as well as edema in my lower legs).  This odd round, I have better controlled the edema through more focused exercise on a stationery bike that I am currently hoarding in room 132!  While no one has yet asked for it back, I am not too sure that I am willing to share!

Jonathan and Megan are both in transit today. Jonathan has finished his month of work as an Orientation Leader at Virginia Tech's Freshman Orientation and is headed north to D.C. for his 6th (?) year of volunteering as a scoreboard keeper at the Citi Open (formerly LeggMason) ATP Tennis Tournament.   We will see him on his way back to VT in 10 days!  Megan should just now be stepping into a shuttle at Dulles, on her last leg finishing up a 36 hour travel ordeal from Beijing to VCU!  I hope to be hugging her in about 3 hours!

Sally is coming today - bearing delicious Sally-cooking, a fluffy towel for my weary traveler, a CD of early Carter family photos, good humor, and company!  It is going to be a lovely, epic day!

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What a lovely, happy day!  Megan arrived earlier than expected at 9:30 and gave me the sweetest, warmest, longest hug ever!  She looks amazing after her travel ordeal and has had enough energy to just have crashed for a half-hour nap at 4:45.  Sally came about an hour later hauling a handtruck of FRESH food!









We feasted on veggies, cheese, hummus, and pasta (among other amazing delights) while sharing conversation, anecdotes, and advise about solving all types of world and relationship quandaries.  What a trio!