We're Back!

Well, when I said I thought I could sleep for three months after that hellacious move, I wasn't kidding, now was I?   Sorry for the interruption of "A Change of Plan", but it really was a summer of alternating  between  seeking respite from the heat, pushing boxes around, looking for my alarm clock, and falling onto any horizontal surface I could unearth.  All summer, I never walked by a bed without this weird siren song luring me in.  We are talking 3-4 hours, sometimes.  And not at night!  But A Change of Plan is back and now that Jim is better,we may deviate more from just reports on his status, although that is the most important topic from where I am sitting.  Okay, from where I am lying.


Jim's cancer has gone into a substantial remission, and his numbers look very good indeed.  On October 21 we decided a trip to DC was in order, a kind of sink-or-swim situation for us both.  He was amazingly like his old self, soldiering through the air terminals, staying up (hey, I did Too)  and going out for visits with friends and family,  For several days, this lasted, until he tripped on a chair in the breakfast room and down he went, with the chair back catching him across the chest.  As he fell to the floor, his knee smashed into the chair, compounding his pain.  At first he was able to function almost normally but by Sunday night he was in a lot of pain.  He was fairly confident nothing was broken...the pain wasn't localized to one spot...but we decided driving home where he could stay in one position for comfort,  make sense. 


So up Route 95 we tooled in the rented car,  Rip VanWinkle and his missus, a pair of functioning narcoleptics in paradise. Along the New Jersey Turnpike, with its quirky little nod to history, passing the Molly Pitcher rest area, Walt Whitman,  Clara Barton... culminating with the big Kahuna, Vince Lombardi.  (They sell Nathan's french fries  there, but this time I passed on them.)  Remind me to leave instructions to my descendants that no matter the public clamor for it,  I do NOT want a highway rest room and/or  candy machine named after me.  Just sayin'.


A week post-fall Jim is just now getting downstairs for meals, and is still in great discomfort, but overall he will be fine.  The trip (in the travel sense, not the falling sense) was worthwhile, and both of us are glad we did it.


Can't close without mentioning that the Koi have been absorbed (as it were) into the family.  I actually LIKE feeding them and watching them.   I love having pets who never had unfortunate accidents I am required to clean up.   Turns out they go into a sort of hibernation and don't eat all winter, and last week, this began.   I threw them food, and instead of their regular happy-dance, they totally ignored it.  How perfect that  Jim and I  have pets that sleep 6 months at a time.     

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A Dispassionate Point of View

Conventioneers at a recent Koi meeting in Kerala, India.

In evaluating the serious responsibility of  taking on not one new pet but MANY, in the form of two dozen or so fish,  it was helpful to look for the bright side of things.  Never “needing” the companionship of an animal (though I grew up with cocker  spaniels, and we did  have a late lamented female cat who gave us two  litters in her day--before I put an end to THAT)  I decided to evaluate the  advantages of koi  (singular AND plural??) over dogs.

Koi don't shed hair  on your  clothes

They never bring in fleas.  

Koi  never look guilty after munching your favorite slippers

Unlike their canine counterparts, they never drag their butts  along the carpet (euu)

Koi avoid mating with your dinner guest's leg

They also never chase cats and only rarely bite the mail  man

 Also, they don’t have dog food breath

Koi are too cool to  drool or slobber

Furthermore, they don’t expect to be  walked during an ice storm

It is practically impossible for them  to run away or chase cars

The town doesn’t require that you license fish, hence they don’t need a koi-catcher

The law doesn’t require you to follow them around with a plastic bag and  trowel

No koi has ever knocked over your favorite lamp with  their tail

They  make it a practice not to bark all day if you're not  home, nor scratch your door.

Koi don't wake you to let them out at  6am nor try to climb in bed with you.

If koi do howl at the moon,  you can’t hear them

Koi don't need tomato juice baths after an encounter with a skunk

They never jump up on small children

You don't need to bathe a koi (that’d be silly)

Koi don't sneak up on the  velvet couch when you are out.

People don’t dress koi up in  jaunty scarves or festive little seasonal sweaters.

Koi don't  eat the pumpkin pie you left cooling on the counter, only to hurl it back up on the floor.

Koi are way too zen to lick  themselves in public

and finally, even Michael Vick wouldn't dream of betting on  a koi fight.

Ommmmmmmm....

Okay, so the house with the Koi ponds is about to become ours.  We'll close on it on June 30, and will be moving in the weekend of the Fourth. Always a prime time of year to move in humid New England. Since the seller is an old friend of mine, they have indicated maybe we can start putting a few things there before the closing.  They have been great to work with, and are a resource for all the perks that come with the house. Since it is his business, the lawns are self-sprinkling.  Since it is a Cape, there was a shortage of storage space, but they have added on, and capitalized on every bit of available space, so we will have plenty of places for all my "stuff."  Then there is the big workshop area for Adrien to settle into, and a garage with a loft for storing seldom-used things.

These days, most of my hours are occupied either packing, and tossing on a grand scale, or planning for the new house and the move.  Details are endless, but of course that does not mean the normal schedule is any different.  Jim still needs prescription refills, (I swear he is EATING the pills)  and Drew has high hopes for a summer that does not include crumpled newspaper or punky wine cartons.

I confess, at certain moments, I am very excited about moving to this new place.  It will surely be different.  On Great Plain Avenue we are 2 blocks from town, and in the thick of things.  At the new house, the street is barely two car-widths wide and there is NO traffic.  Jim still has not been in the new house... although the kids took a multitude of photos, so he has the general idea.  Really, he just wants to have peace and quiet, which should be easy to accomplish.  There is a huge screened porch and we have gotten a futon so he can be out enjoying some fresh, mosquito-free, not too sunny air.  The kitchen is a little small, but I have to remember I am not cooking for a cast of hundreds any more.  And best of all, we can accommodate one-floor living for Jim if that becomes necessary, but have the luxury of a second floor bedroom too.  

I also celebrated my hmmpfrh birthday this week, spending time with my kids (shopping and drinking/ eating and opening presents... my favorite things!! How did you KNOW!??)  Matt found us a great little Bistro in his neighborhood, and we had a blast.  Hope Jim will be well enough to join us next year. (when I will turn hmmpfrh+1)  

So that's really the month at a glance.  Jim still has pretty substantial pain from time to time, which can be controlled with meds.   He still isn't getting out except to go to the doctor.  His big challenge over the next 10 days is to weed through his office, which is crammed with books and papers like you dream of.  The grandkids are helping him by scaling the book shelves and bringing down ones for him to assess. And occasionally duck.  Well, they gotta have some fun....

This is our own personal Buddha, who has been a
 reminder to be calm and peaceful, living in the moment.
One of the grandkids found the heart shaped rock and
placed it there. .  For us he is not about religion but more of a
mind-set. The statue will find a niche of honor in our garden.

I'd promise to write more in a week of so but you're too smart to buy THAT fable. So sometime in early July, look for my treatise on why koi are better than dogs.





 

Home sweet Pond

No, really, they eat out of your hand!

Being an inveterate shopper, I expected the ultimate shopping experience would be to  choose new home.  Alas, over the past couple of weeks, we are riding a version of the same roller coaster that we have white-knuckled through Jim's medical escapades.  Our criteria were simple... one-level living, a nice kitchen, maybe a garage, room for Drew and Laura,  and most of all, in NEEDHAM.   Once I started looking at ads, it became apparent that one could get twice the house for the same money, say, two towns away, or even in Bellingham where my sister lives.  Nice communities, all. Right?

But my progeny had other thoughts.  Caring for Drew relies on my being able to drop him at Lynn's doorstep at a moments notice.  His dad lives in Needham, so if Drew attended school in another town, getting him back and forth might limit their visits to weekends.  Furthermore, the health scares Jim and I have recently given them left them all a predilection to have us close at hand.  So, back to the drawing board.

The first house got away on a technicality.  After we agreed on price, the seller wanted to stay well into July.   Since we need to be out in late June, that wasn't likely to work.  So we looked at some more houses.  Boy.. there was nothing to put a smile on MY face, until we discovered a place on the edge of Needham, near the Newton line.  It is an adorable Cape with finished basement, fabulous, huge porch and a yard to dream about.  Being a great believer in good omens, it felt like kismet that the owner is a long-time friend, a neighbor is a pal of Lynn's, the seller's realtor turned out to be related to another friend.... how can we lose?  (Don't answer that.)   My friend (and realtor) Maryruth has been so amazingly good at what she does I have total faith in her.  

While the house does have a few stairs to enter the building, it can be adapted for single-floor living by converting either the office or dining room into a bedroom for us.  We will start upstairs, though.  Jim's participation in selecting a house has been somewhat limited, beyond his urging me to put in an offer on this STAT!  Thus far, though, he hasn't been in this one. For the majority of the time,  he sleeps.

Did I mention the house boasts not one but two koi ponds?  How 'bout that!  Lover of live creatures that I am, I was a bit nonplussed when someone wrote on a Web site that these 9-12" fish sometimes are trainable to eat out of your hand. (or not)   Someone commented that they eat four times a day.  That's more than ME!!   I pressed on to discover suggestions on what to do if your koi get sick.  Never considered fish get sick... but if it has anything to do with applying thermometers, even in the best of worlds,  I may never sleep again.   I'm sure this whirring in my ears will go away as soon as I name each of the koi.   Lets see, Dasher, Dancer,  Grumpy, Bashful, Chiko, Groucho, and Harpo... any more nominations?

A Wistful Parting...

What is it about news, once you get older? Seems to me that when I was younger, news was usually good or bad, but with time, shades of gray take on a whole new meaning.  (!)

How is that for a segue into the 2010 contender in the "quintessential mixed bag" category? We have sold our house.   Yes,  a contractor has bought the house and will retain the main part of it.  As you may know, we recently confirmed we are on two lots, so he will move the house, positioning it  so the land will accommodate another house also.  This guy is known for doing high quality work in preserving some semblance of old while accommodating  buyers needs for all the modern conveniences, and for that I am grateful.  But of course, there is the tug of leaving the house I have alternately loved and damned for all these years.  Snow thunders off the slate roof, roaring down two stories to hit the ground with an earth-shaking thud. The heating bills are astronomical.  If only we could have figured out a way to occupy the upper third of the rooms where all the heat went.  Lynn remembers our old house on Valley Road, but Laura came here at 6 months old and Matt was born here.

I always thought of it as a Christmas house, and we lovingly decorated it each year.  A Nutcracker  tree stood in the living room,  a small part of the veritable forest of trees that have been lugged in and lugged out over the 134 years the house has been standing.  Fondly remembered pets are buried out back in the garden, along with some mice for a hereafter snack, and the odd GI Joe action figure.

The kids and grandchildren have their own memories tied up in this place and emotions are running high.  All of them have called this house home, and we are enjoying a festival of flashbacks, like when  5-year-old Drew waxes poetic of things he remembers from "when I was a kid."

So for the moment, we free-float.  We need to be out in mid-June.  The purging of the attic and other nooks and crannies continues.  I vow I will be more discerning with what I keep, come the next house.  We would like to remain in Needham.  One particular house has caught my eye.  But it somehow seems ...um...disloyal, like meeting a great looking woman at your wife's wake.  For now, and for a long time in the future, my heart will linger here, where everyone was always coming and going, where there was room to house all four of our parents, all five grandchildren, at one point or another, and take in the occasional random wanderer.  Where everyone in town knew your business by sitting at the stop light.

This house has served us well.  I hope we have done likewise.

P.S.  Jim is doing okay.

Breaking News: Easter runs right into St. Paddy's Day

Of all the parts of the hospital I have comitted to memory, there is one I overlooked until now.  The ceiling.  But  that is over now.   I was just released from BIDMC Boston.  Came by ambulance around 10pm Tuesday evening after having a morning appointment with Jim earlier in the day, and a trip back to the city for an early evening with Matt. Symptoms started rather abruptly with tingly numbness one  gets when your leg falls asleep.  No big deal. Fingertips on right hand, then lips, spreading to tongue, face, and hand but all on one side.  But several hours later, I noticed my knee was buckling causing me to stagger drunkenly about.  Problem was, no wine was involved.  So off to Glover and an overnight on a pillow-less stretcher in at the ER from Hell.    Conclusion, it was a small stroke of an unusual kind.  (Would I have any other kind?)   All will be well,  but it is a sobering and enlightening experience.

Some random thoughts along the way.  Jim coped well and indeed seems to be rejuvenated, at least for now. The kids were at their very best, banding together to assure I was being attended to.  Since I have a catering job on Saturday, Lynn is heading up the volunteers, and getting it done.  Laura has taken the last three days off to be here for me, especially running errands.  Matt came home and took charge of getting the kitchen rearranged and back in order.

The care at BIDMC couldn't have been better.  A battery of tests kept my dance card pretty full, and each person  who arrived (promptly, even) from transport was friendly and efficient.  The array of faces one passes in a hospital provides as much diversity as a visit to Sesame Street.  People from different parts of the world come together to seek and give care.   At times I really wished I had a camera to capture this uniquely positive atmosphere.  The barriers that keep us from connecting with one another are instantly removed once you are a patient.  It is hard not to seek to befriend someone who has temporary control over your life... a genuinely humbling experience.  Even the bed was rigged to set off an alarm if I had the temerity to take myself to the loo without a guardian. My favorite memory was of a mature gent who visited with six students. All crowded around my bed, while he gleefully jabbed me with a tack all over my body, like Julia Child with a duck, all the while saying, "can you feel the little prick, can you feel the little prick?"  And me trying to compose my face.  "Ya, buddy..."  Still not sure he wasn't aware of and delighted with the double-entendre.  He had a mid-European accent, while my favorite nurse, Sree. was from southern India.  Discussed Iranian cooking with the Echo-cardio tech whose  mom who was from Iran, and a transport assistant asked me if Wendy, his baby daughter's name, struck me as American because he and his wife felt if the child was born here, she should have an American name.

Prognosis?  My symptoms are still with me.  Half of my tongue is numb even to hot and cold.  My fingers and face still are numb and tingly.  My handwriting is different.  But overall, this seems to be an isolated situation.  It wasn't the kind of stroke that is induced by a blood clot. This was a small corpuscle in my thalamus that developed a hole, as I understand it.  So the likelihood of recurrence is slim.

I have to pay more attention to my diabetes, which had fallen to the bottom of the priority list for a while now.  Consequently, until it is under control,  I have been ordered to take insulin, until it is well controlled, and then we can go back to the pills, hopefully, because testing and taking insulin is a pain in the neck.

File under Chocolate Easter Bunnies I can no longer eat.

A New Day!!

Just as the first purple crocuses are peeking up, and the occasional drift of daffodils lifts the spirit, we celebrate Jim's new stem cells' Hundred Day anniversary.  Yesterday, on the actual day, we visited the doctor who had only good news.  The cancer has retreated to only  6% of the cells in his marrow.  Although this is short of full remission (which is rare), this rates a B+/A- for grading partial remisions.  He has also put on 5 pounds, mostly from eating bags of junkfood, celiac style.  I suspect his sodium load is astronomical, but I can't argue with the fact that he is retaining some weight (sodium+ water retention?  Who knows!  Sometimes I over-think stuff)  He is getting/eating good meals too, and his absorbtion of nutrients is also good, by one of those measures or another.  

Our next step is getting the vaccine they developed in January 09, using his own stem cells then.  This is unrelated to the transplant, and is part of his participation in a clinical trial.  He will receive three injections in the coming months, which could help him, or which could be the control group which gets a neutral substance.

What's the outlook?  Well, he is still perfectly exhausted 24-7.  The trip to the hospital wipes him out, although I must add that he has abandoned the walker, and forgot his cane, and still did well on the long trek from the car yesterday.  His recovery is so slow because he has been incapacitated for so long.  Your body needs to fight gravity to keep in shape, and being horizontal saps your muscles rapidly.  And for Jim it has been about 3 years since he was active (even when active means sitting at the computer!!)  So his return to anything resembling a normal life is going to take quite a while longer.  The pain meds he is on slow his brain, in general.    He still has no interest in reading, writing, TV nor music.  He genuinely sleeps that much.  Once the warm weather is here, I plan to get a chair and lounge in place, then boot him outside so he can breathe fresh air and restore his Vitamin D, so the calcium his bones need can be restored.  His bones are so soft the doctor said when he inserted the needle into his vertebrae to retrieve the bone marrow biopsy it felt no different than penetrating his flesh.  Eeuuuu!!

He also officially parted company with the Commonwealth of Massachusetts, retiring officially this month... a little anticlimactic having been away for the past 15 months.     He was there over 17 years, in an undergrown bunker.  Explains a lot.  

The house will be going on multiple listing service shortly, which will be a drag, what with Rip Van Winkle in his beddy and our resident 5 year old always willing to requisition the cover of my Wok for a shield, and a huge wooden spoon for his sword.  Some hateful psychopath at the Lego company created a 1000 piece set of legos that fit in the palm of your hand, and we own part of a set.  Three of them can lodge in the same crack in your foot with great ease.  (for them, not for you) My Electrolux, driven somewhat maniacally, by yours truly, gobbles them up like peanuts on a Margarita bar.

And frankly, there has been a certain, shall we say, relaxation of the finer details of spring and fall cleaning since Jim's MM  fell out of the sky, four cleaning seasons ago.  Translation: you can write in the flat planes of the wood moldings in any room in the house.  So it will be an exercize in humility (God's idea of "sleeping in on Saturday" is implementing ways of keeping me humble) that I will try (in vain) to bring the house up to realtors standards, yet again honing my soul for beatification.  Be advised, though: I draw the line at hair shirts. Too many of them make me look fat. 

My imagination is cruising the Aegean this Spring.  Vicarious travel surpasses actual travel because you 1) don't need a passport, 2) don't need to take your shoes off to get through security and 3) the currency there is even more unstable than the currency here.  I do put some clothes in a suitcase for my cyber travel, since I can put in things that no longer fit... string bikinis and little halter sundresses... because I am not going to wear them anyway.  Go ahead, call me "tapped".   Sure beats Spring Cleaning!

C'mon Springtime!

Really sorry to have left you staring at the cold french fries for so long, but things have been uncustomarily  busy.  With the house kind of on the market, I am frantically trying to sort through all the accumulation I have virtually ignored for the past  mmgphfn years.  From start to finish this is a mind-numbing nightmare.  I  am someone who does not see the forest at all... when I start on the forest, I begin manicuring individual leaves, cutting off the dead ones, going sprig by sprig.  This is also how I tackle 11 rooms of abject chaos.  It takes time.

Main importance is that Jim continues to improve, by the numbers gleaned from his blood work, and by the fact that the weight loss has been reversed, albeit at a snail's pace.  Too often, I feel like a drug pusher, suggesting things I believe to be tempting, only to be rebuffed in favor or pea soup, or oatmeal.  Ah well, as long as he keeps putting calories into himself, what matter?  We visit the hospital today for our weekly appointment, and in several weeks, we may have the results of tests to see if the stem cell transplant beat back the multiple myeloma entirely, partially, or not at all.  

Overall, Jim is showing more signs of life.  Some day he sleeps insatiably, but he sometimes has a run of two or three days when he emerges and connects.  Still not much reading or computer (!) but he does show interest in going through papers and journals with an eye to discarding a lot.  It will be nice when Spring is permanently here, and I can attempt to cajole him out of the house (he's a dedicated home-body.)

When we moved into the house, we had not been connected to the sewer, so of course we immediately--did nothing, in the time-honored tradition set in the Muckerheide family motto: "ain't broke, don't fix!"  Only on the horns of complete desperation did anything actually get action.  So when the grotto of wood chips and pine needles Jim's  ever thrifty dad crafted in the corner of the cellar to use as "kindling" turned out to be directly under the line to the septic tank, we had quite a moist dilemma.  At that time, the honey-wagon had to send for back-up (as it were).  With chagrin, I watched two honey wagons, front fender to front fender, canoodle at our busy intersections,  at school let-out time, no less.  Um....  

Now we have the amazing recurring dumpster.   This is the fourth one we have had in the past five years, a frequent flier program no one wants to be part of.  Apparently other people throw out their stuff as it accumulates.  What a thought!

I am Linda and I have an addiction to magazines.  Gourmet, Bon Appetit, Southern Living (never lived south of DC) Martha, Fine Gardening... and miscellany that is no longer in print.  They are like former students...or teachers really.  Have a terrible time consigning them to that dumpster.  "Recycle," my brain suggests.  "Not on your life,"  my spirit counters.  And so I go, cleaning the attic by tearing out the article I might want in the future,  from one of literally several hundred publications.  Visualize a pile of unsorted magazine clippings, right where the wood chip pile of glop used to live.  Can you spell SLOW LEARNER?

Yup,  it's going slow.  Not fair that you get cold fries, though.   I'll do better... I promise.

Great Shot of the Foil!

Another week is over, and we have seen the oncologist and learned that Jim put on some fairly impressive weight, and is looking better, and feeling marginally better too. They are going to tinker with his pain medications to try something more long-lasting, and although the idea of changing things around makes me nervous, I guess they are pulling in much more impressive bucks than I am in the medical field, so we probably need to comply. It will be gradual, and any backslide can be corrected pretty readily.

I find that life brings changes in your goals to an enormous extent. I had witnessed this earlier when I went in only ten years from dreaming of being the wife of an ambassador to owning a pick-up truck. Nothing like living in a town without trash collection to straighten you right out. So now, my ambition to know all the great new restaurants in the city personally, has given way to our noontime outing this week for lunch. We were out of BI in record-breaking time, and were given guarded permission to have Jim's first lunch "out". I say guarded, because we were cautioned not to go anywhere that was "greasy-spoonish" so that nixed my idea of the clam shack on Revere Beach. (just kid-ding...!! I'm sure the food there is fah-bu-lous).

I racked my brain to think of anywhere on our route home that passed the gluten-free, diabetic, transparent standard of cleanliness standard, and we settled on Five Guys Burgers. Now wait... don't judge too fast. All the burger is cooked well done, right out in plain sight. He could order it plain, sans bun, sans lettuce, tomato, pickle, onions, mushrooms, etc. etc... He was quite pleased with just a fresh burger with processed cheese although eating it on a naked leaf of aluminum foil bordered on pathos. With excellent fries on the side and complimentary roasted peanuts and a root beer, to wash it down, he ate it like it was a lobster at Locke Obers. Maybe being so sick makes one appreciate life's small pleasures. Next stop is the "early-bird" specials. Don't pinch me, I'm not sure I want to wake up.

Tap Tap Tap... IMPATIENCE calling.

It has only been 47 days since the SCT and Jim and I are both antsy to see quicker progress.  This, despite the fact that we know it will be the end of March before we know much conclusively.  Still, Jim hoped he would start feeling more normal, and the same old pains where the bones were compromised still hurt.  Nice to have healthier blood, but misery to have the same old holey bones. They will take even LONGER to heal.  Do we see a pattern here?

The past week culminated on the worst Thursday on record.  Not from a health viewpoint, but just overall.  It started with a buzzing circuit breaker box just outside Jim's door, which signaled that the heater and the electric blanket were duke-ing it out over which way the electricity would go.  Drew had been launched toward the bus in absurdly cold temperatures.  Jim had a sudden bout with the flu in the hospital garage necessitating a quick ride home and a blown-off appointment.  The washing machine on our second floor chose this particular day to create a "meditation" waterfall of sorts, into our kitchen.  Throw a bathrobe on it.  (The meditation part was when  I was "thinking" of slitting my wrists)

And just so you know, having a cancer patient provides no dispensation against illness or injury for other household members.  I've had fairly persistent neck pain and vertigo for two weeks, sufficient to send me to the ER to rule out  some draconian possibilities which were, gratefully,  nixed. And Drew was taken to a different ER two days later with asthma and breathing difficulties, which also concluded happily.   Good Lord!  Enough with the raining wild monkeys...PLEASE!  While all ended well enough, the profusion of problems all in one day makes one wonder if we are God's  only entertainment channel.

Oddly,  through it all, I noticed a strange calm.  Back in my other life before this, I was fairly high strung and emotional.  Now I am someone I scarcely know.  I don't  seem register "uh-oh" the way I did, but morph straight to a cool problem solver dealing with whatever, all the while wondering who the heck has overtaken my personality.  I don't know this woman.  And if she is here to stay, does anyone know where  Linda went?

Hmmm, maybe a convent in the South of France?  Oh, there she is now!!! (photo above...)  Imagine being a size 3,  living in a quiet place, knowing what you will wear a week from tomorrow, just the rustling of skirts, oriental carpets, meals appear and are on time,  maybe making a little jam occasionally, and the sound of Vespers.  Sounds like Club Med to this old girl.

Lots and Lots of Sleep

The pages are flying off my daily calendar like a cheap 1950's movie. More than two weeks have passed since they sent Jim home. The first ten days were filled with daily trips back in to see the doctor, visits from the Physical Therapist,  appointments galore.   But it has quieted down to every four days or so, which is a blessing. Overall his health is good, in that his blood counts and other tests indicate a lessening of the myeloma. His blood count shows a strong replacement of the killed cells with new cells.  Platelet count is inching up, which is what we want.

The biggest problem to deal with is the fact that he managed to lose ten pounds in one week. His weight is, at this minute, its lowest since about sixth grade. This leads, of course to several ancillary problems. He is always cold, although keeping him sequestered under an electric blanket, in a room with a heater, has made things easier. Perhaps the most noticeable thing is that he cannot ever seem to get enough sleep.  This avid talker on subjects that interested him, is now quite silent.  Chemo is life-saving, but it takes as much as it gives, really.   It is not uncommon for people to develop what is affectionately called Chemo-brain.   This is  manifested by confusion, forgetfulness, inability to concentrate,  to assimilate information and organize it.  Heck, I've had that for 20 years!   But no, with Jim it is most visible in his hesitancy to agree with anything, to move forward, to consent.  And of course my patience level is nil, right about now.

This brings me to a thought I tossed around en route to the hospital one day. Ten or fifteen years ago,  I had a dear friend who was a candidate for a lung transplant.  As part of being on the list, she needed to put down two names who would be her caregivers.  Her husband was first, and they asked if I would be second.  WIthout hesitation, I nodded an emphatic, little-thought-out "yes!"  It seemed like a no-brainer. Who wouldn't?    I had NO idea, nor did they, what kind of commitment I was blithely agreeing to.  How many hours would this take away from my job, my kids, my home, my husband?  What would be my responsibilities?   How much reflection should I give to how I would feel dealing with her possible depression, or her potential demise during my watch?   Would her spouse feel his role was to care for her overnight and expect me to be there each and every day before he went to work?  What if I wanted to quit?  How could I ever do that?

Often, we are led by our best intentions.  We are all too ready to jump first and think later.  I say this, because having been caregiver to Jim, I understand better what the commitment meant.   It is an enormous undertaking, and without giving it a lot of thought, and considering the parameters and ramifications of the job, your good intentions could become a loathsome burden.  That must be balanced against the good you can reasonably do.  Only then can you offer yourself in such a selfless role.
  

Color Jim Happy!

If nothing extraordinary happens,  Jim will be released from the hospital tomorrow. ( Well THAT'S extraordinary!)  His blood-count numbers are stable, the elusive low-grade fever is gone, and it is time for him to say farewell to the four walls he has been staring at since the 12th of December. Color him happy!

We have transformed our dining room into a bedroom for him. The drapes have been removed and laundered, new bedding purchased, carpet steamed, woodwork scrubbed. The theory is that spending time downstairs where the family is nearby is important in helping him readjust his outlook from one of "hanging on" sequestered under the blankets to one of emerging from the tunnel into daylight, with his new stem cells.  And as nurses go,  I am starting to look good.

Color me....um a little intimidated, but better than earlier in the week. I had a mini melt-down at the thought of bringing this trunk-load of eggs that is my husband into a less than operating-room state of purity. And then cooking for someone with a variety of restrictions.

Part of my mission in writing this blog is to share experiences and their subsequent ripples with you, my reader. With that in mind, some observations.

1. Life in general is fraught with inconsistencies. I'm someone naive enough to believe if I have all the pieces, I can make things add up, and if they don't I keep probing.

2. In my lifetime, rules have gone from serving the patient to serving the large institutions, including but not limited to the medical community. Our litigious society has brought many financial settlements to certain people, sometimes even justified, but it has caused the same unexpected consequences as Political Correctness has. You never know if you are talking about actual facts any more, or if you are on the spongy moss of double-speak.

These two factors deeply color the idea that I can take care of Jim adequately at home. The manual I was issued outlines a well-established protocol of neutropenic protocols and diet.   Soon the dietary restrictions will be relaxed, and as a caterer I am fully aware of safe food practices.  Most of the remaining food restrictions don't even pertain, as he does not usually frequent restaurants, eat sushi regularly, visit salad bars, nor fast food establishments much (bye for now, Burger King).  

Visiting nurses and physical therapists will be pencilled into the spaces where we are not frequenting the garage under the doctor's office thrice weekly.  Little grandson Drew is staying with his dad for the next few days.  And I am assured that I am perhaps over-worrying.   But we come back to the fact that  rules are written for such a broad cross-section of humanity, and discreetly protect the hospital  from harm (i.e. law suits) that they would NEVER understate danger, nor fail to recommend you wear two pairs of suspenders and a couple of belts.  Why wouldn't they?   I have read warning labels that contain absurd precautions.  I recognize that.  But here, I can't tell what is the "do not use this toaster in your pool" from the warnings that are necessary for Jim.   So after having sat down and having a rational chat with myself, I have decided to re-read the book so I don't miss anything, and apply "Keep it Simple" techniques and assume that if other people have survived their discharge from the hospital, so will Jim.

But just incase, don't stop praying quite yet.

Once in a Blue Moon

Happy New Year!  To say that I am deliriously happy to bid farewell to the 20-ought-anything is an understatement!  We lost both Jim's parents in 2001, and my dear friend Peggy.  Of course, 9/11 is another of those Day that will Live in Infamy occasions. Truly, it was the event that most changed the the world as we know it.  Never again will any of us be as complacent, as secure, as invincible as before.

Happily new people entered our lives in the 21st century, namely grandsons Joe and Drew.  Both remain the kind of blessing to our daily lives that those without grandkids view with a certain skepticism, verging on disbelief.  The boys and their sibs remind us that love (and not to forget humor) really makes up for a lot.
In this decade, we travelled a lot, saw the hay-day of RSH, ran workshops, spoke at conferences, and generally had a lot of satisfaction and fun.

The big news today is that they are preparing to release Jim from the hospital some time next week. That is wonderful in that it is a positive vote for his recovery from the transplant.  OTOH, it also means this old house is supposed to be ready to receive him under pristine conditions.

Um....

This old house was built the 1870's and comes with hot and cold running dust.  Its insulation is horsehair.  We have radiators. His room in the hospital has been set at 74 degrees.  How do YOU spell Fat Chance!   Just can't be done!  We can add an electric heater, and down comforter, but I fear we will fall far short for his comfort level. After all, he has blood the texture of  Dr. Pepper coursing through his veins.   Meanwhile, as I type, little Drew is hacking away down-stairs...  has had a persistent cough which may be part of his asthma...... or not.

My dismay about normal living  conditions v. what Jim needs were all the more heightened when I was told that the brand new coffee maker I bought for his room on the advice of his nurse,  cannot be used, because you cannot clean out the delivery tube inside it to their specifications.  Oh, my.   So after all this, they are sending him home to see if  EYE can kill him!! With coffee grounds and other floysam and jetsam floating around here?  Stay tuned!

One thing I must do is somehow replace the bad stuff  with gratitude for the blessings  2009 brought.  I am grateful for all the hands-on real time help I received, from Lynn taking Drew for endless hours, to Adrien fixing everything that I break (with a smile, even.)  I am grateful for the battalion of doctors who care for Jim, or who do the research to make such miracles possible.  You can never believe how grateful I am that the little footsteps overhead are silenced.   Nutjob apparently has moved on.    I am grateful to have a car under me...after too many cars with no sense of the absurd.  For friends who step forward to help lug us get through this.   For people who leave comments on the blog. I am a total sucker for comments.

Most of all,  I am grateful for family... Jim and my kids... the littles.... my sister, and all those who confess to membership in this crazy tribe.  Family isn't only about blood relationships.  Family extends to those who are here through thick and thin, on whose support we rely.   We are blessed with lots of those people as well.  May the next year bring new beginnings,  rich insights derived from the challenging times, unfettered laughter sometime in every hour, looser-fitting clothing,  easier breathing, determination, grit and the gift of not taking ourselves too seriously.

Mazel tov!  (daintily raising my tumbler of jagermeister  on the rocks, little pinkie crook't)

You didn't think I'm getting through this sober, did you??