It's a Christmas Miracle!!!!!

Everyone got along for nearly an hour!!! Well, there was a little hair-pulling, head-flicking, elbow jabs, rabbit-ears and minor pinching, but once Chris and I got out of the frame the kids did great! j/k...Here's the first shot. (Below is the original...)

A week later...

Overall the past week has more to recommend it than not.  Chemo continues, with no serious side-effects. Jim has had much better pain control, and is lucid all the time. Although he still sleeps a lot, he has periods of productivity, as he strives to bring more order in the office, which had rolled far out of the stretch of ordinary mortals.

Part of what keeps life interesting is the task of sorting through the paper morass.  In addition to registering for Social Security, there is the question of Medicare vs. our current insurance, long-term disability, pensions,retirement, deferred payments and all the choices that are boring but necessary.  The part that is dodgy is that you do this in semi-darkness, knowing a major toe-stub may be just a step away. ("Oh, you didn't sign up for THAT did you... oh, that consigns you to the third circle of Hell...at least until open enrollment time")  Folks, sorting out this stuff places on my list of favorites right above pulling on support pantyhose on a humid day.  I perfectly reek at things that have only one right answer.   Give me some turning around space and I am fine.  But facts, hard cold facts, are my enemy.

Meanwhile our Christmas tree has found its way to the living room where we are expecting it to somehow differentiate the climate there from the one outdoors and permit its branches to "fall".  Speaking of pushing  "believe" to the snapping point!   (Its okay to relax... thats not really our tree.  You KNOW me!)

New round of chemo.

Good news.  Monday we saw "the team" and got  a lot of answers, all of them positive.  Jim's numbers continue to be good, improving with each chemo round.  We started another after the appointment yesterday, and they will continue into January, for a total of four rounds of 4 treatments each.  We've pretty much abandoned the idea of splitting treatments between Needham and Boston.  Better to keep continuity even if it is less convenient.  

They adjusted the pain medication...tinkering to find the right combination is an ongoing project. They agree he shouldn't be in so much pain.  A new MRI will tell if further radiation will help, not to treat the myeloma but to alleviate the pain (palliative).   

It was a long day, and by the time the chemo treatment was over  there wasn't much energy left in either of us.   

The trappings of Christmas make this all the more surreal.  I have always been such a Christmas person.  This year, I know we need it, for the sake of Drew who will never be 4 again, and for Jim, who will need some pleasant memories to get through the months of isolation after his Stem Cell Transplant.  So we have a tree, and will host Christmas Eve as we always have.  It is a piece of tradition I am just not ready to relinquish,  but although still a control freak, I am smarter now and am farming out a bunch of jobs.  It will all be fine.  The people are the parts that count.  

For those who have asked about our squirrel Road Runner, he has adroitly sidestepped the plight of his late buddies, whom we keep catching.  It is interesting to piece together what might be his resume. He has taken to getting up between 4 and 4:30 AM and doing laps around the attic crawl space, even waking Drew at one point.  We have concluded that he is wearing cute little rodent combat boots, so loud is the sound of his lone footsteps. An officer in the rat-mouse-rodent  army?  We have been leaving out valium as a little treat for him, in hopes he will become more serene, less  stressed.  File under "If you cant fight 'em...."

 

Constantly changing

One of the less predictable things about aging is that you aren't always aware of how things subtly change in your wake.  From child-rearing to the routine mid-week supper, to what is appropriate to say in polite company, things change, but often so gradually you don't really notice,  sort of like wrinkles.  

Jim is in the care of specialists at Beth Israel in Boston.  The "team" is quite amazing and lots of improvements have been made since my dad was a cancer patient, back in the early 80's.   The staff has always been supportive, and remains so.  Clearly someone has been making a conscious effort to create an atmosphere that is friendly, informed, compassionate and upbeat.  

But along with this has come a decentralization of care that is unnerving.  Our primary oncologist has been "away from the office" over the three months Jim has been under his care for a week for the religious holidays,  a  week in October for travel, and then approximately a month for elective surgery in November.  During that time, I understand he has been kept abreast of Jim's hospital-izations by e-mail.   Unfortunately his "fellow" who is a delightful expectant mother of twins, has also been doing whatever pregnant fellows do, (??)   and has been missing almost as often and simultaneously.  During the last four day stint, inpatient, Jim never saw either of his physicians, nor did he see anyone higher than the rank of "attending resident" during his stay.  It has been 7 weeks since his oncologist saw him, to decide whether to continue Chemo or not.

In this time Jim's countenance is in slow but steady decline.  His has acquired a roundness in his upper back from compression fractures in the vertebrae which then collapse on each other.   It is tempting to encourage him to stay in bed, where there is no danger of him falling, our greatest worry.     Since my last blog entry, the progress that seemed so wonderful has been lost and it feels like perhaps another rib has let go.   This slow-motion disintegration makes the presence of a doctor who can honestly proclaim, "the chemo is working and we are full of hope" all the more compelling.  

Our next appointment is Monday and I assume we will get some update on Jim's progress at that time.  By some miracle, the planets are converging and all the doctors will be awaiting us at 10 a.m.!   If it is your wont, please say a little prayer for him.

Looking good

Overcoming all predictions to the contrary, we got to the hospital yesterday for a 7 am procedure.  Only no one was  expecting us.  (Moan silently--I hope, roll eyes when no one is looking,  force a smile like this was part of the plan... "oh, no problem, we always get up at 5:45 am and drive 9 miles for a nice bracing cup of hospital coffee and an $8. parking charge") Luckily we had brought the print-out that had the appointment listed, so it was apparent we were not the delusional ones!   The procedure, part of the clinical trial,  has been bumped to the first of next year, and every one is 'very, very sorry.'

The good news is that next, Jim suggested going out for breakfast (when is the last time we went anywhere in public?)  and then asked me to take him to work.   He put in a full day, and, after a very brief rest,  tackled some of the backlog of paper

and e-mail that has accumulated here at home in his "absence." Obviously he is feeling stronger, motivated and is in less pain.  

 YAY!!

The days since Thanksgiving weekend began have been a treat beyond measure.  Jim's pain has abated, so he is up and around more. Hopefully the radiation treatment to his broken ribs is taking its healing effect. 

It was wonderful to have my sister and family here for dinner on Thanksgiving... plus our own kids, and their kids.  So casual and familiar.  Jim came down for dinner, then came back later and spent a few hours talking and joking with everyone.  The meds sometimes make him tired, but it's all a balancing act, and we seem to be getting the hang of it.

The decision not to shop for Christmas has been liberating for me in a way I hadn't appreciated.

No medical appointments, no commitments, just morning flowing into afternoon and then slipping into evening.  Plenty of leftovers so there are no meal-time chores.  I feel like I am in a feather bed of bliss.  How ironic that it took something so draconian to make me appreciate the beauty of not  banging my head into obstacles of my own making.  But I am not surprised that this eerie journey we find ourselves on has a positive side, with new awareness and opportunities to grow, hanging on low branches, waiting to be discovered.

Don't worry, by Monday I'll be an insane grump again. This la-la land never stays long!!

Thanksgiving was exactly what it Should Be...

A wonderful bountiful table of nourishment, moments of quiet reflection, and as much laughter as we've ever had, around a table that didn't have an inch of "frontage" space to spare....Does it get any better than that? Shoulder to shoulder...with the exception of the usual minor injuries (stop laughing, Maddie), we had a blast.

I hope all of you had a wonderful Thanksgiving, too, as great as ours. Thanks to all for the thoughts, prayers, and outward expressions of compassion for the way things are at 793GPA these days. Thanks, also, to those who read along quietly, and send thoughts and prayers.