2009 looks to be a bumpy but worthwhile ride!

Since the last entry, there has been a Wild Ride of ups and downs, doctors and nurses, medication - for all, I think...and Dad/Jim's "uppers-downers party mix" of sorts. Dad had TREMENDOUS pain prior to, and in the hospital in Needham last week, and most of the duration of his stint there was spent trying to work on balancing meds to keep him as pain free as possible. Of course, everyone else has been anxiously waiting for "news", which never really comes...just gradual dribs and drabs of "how today is", and then, like New England weather - and my mood - it changes just as soon as an update comes in.

By last night he had convinced them to let him out, so at 7p he returned home, in part so he could have the "freedom" to go into BI Boston hospital and have an appointment, to OK the return to chemo next week, as well as having marrow harvested. While there, they found 2 things that they really wanted to keep him in Boston to further investigate (a vision/optic nerve problem as well as oxygen saturation being vvveeerrryyy low). Poor guy! He just barely made it home, and had come down this morning practically skipping (ok, that's a gross exaggeration) and commented that he's not been actually pain-free like that in so long. Of course, that's not MED-free and pain free, but hell, we'll take it!!

Mom is amazing, as always. She knows, well, everything. She knows the routines and process, and details that surprise even the Dr's. Of course, the bag-boy at Roches pushing her groceries to the car is still bent over in the parking lot laughing his silly ass off, at her trying to get into someone else's car with her the groceries. (Yes, in Needham someone still walks your cart and bags TO the car, and moves them for you...AND you aren't allowed to tip them. Having grown up with that custom, I was surprised when nobody from outside-this-area knew what a "bag boy" was!) But anyway, hey, everyone deserves some cheap entertainment to keep the smile-across-the-world, no? I think it's fair to say that her attention is literally being focused 100% where it needs to be -on Dad-, and the little things, like knowing your own vehicle, are best left to the grunts...like Laura, Matt and myself. I think she just did it so we would all have a laugh....right, Mom?? That was all planned out in advance... she's so giving! (You KNOW she's going to slap me silly for telling that story, but I'm taking one for the team here!)

So, on this 12/31/08...we prepare to take 2009 by storm, sneak attack, and in a fabulous match-up-of-wills. I don't think any of us have EVER been surer of a pending challenge, but overall, I'm confident we will fight through the sucky parts, and laugh at the rest...

Happy New Year, everyone!!! Where ever you spend your New Year's Eve, don't forget to be glad for all the little things. This year we're thankful for all that is going well. The 2009 glass is half full.....Cheers!!! Just because, as the image indicates, the collective (and former) Needham-Muckerheide's should all be wearing "Contents Under Pressure" t-shirts, doesn't make it ALL bad, right? Sometimes it's just champagne, sparkly and bubbly, and sweet - and all over the floor. Now get a damned towel before UnSteady Jim comes along and slips, fer cryin'out'loud!! ;o) Crazy, I know...that's why you're still reading!!

The Morning After

'Twas the day after Christmas and we are all grateful.

It was, in many ways, a beautiful albeit bittersweet Christmas. Our children, and grand kids, as well as my sister, and array of in-laws and dear family friends gathered as they have for the last 28 years in our kitchen, taking turns blocking the stove. We have a fairly large house, and to be fair, the kids had taken over the living room in a bloodless coup! At one point, the chaos level rivaled the "running of the brides" in Filene's Basement (r.i.p) but still, I wouldn't trade it for anything. It is possible that this was the last of 28 Christmases in this house, and that makes us all sad. But we need to down-size and will be trying to figure out the best way to do so in a crummy economy with a house which has the kinds of flaws that anyone approaching 150 years old might be expected to have.

Jim came down to join us several times Christmas Eve, and was down most of Christmas Day. Unfortunately, he had picked up a cold somehow, and was under the weather. Before Christmas Day was over we were at the ER in Beth Israel Needham and he was admitted around 2 AM Friday morning in excruciating pain that even several doses of morphine could not touch. X-rays revealed no pneumonia, (which was my great fear) and a head CT scan turned up nothing unexpected. The guess is that he has more ribs fractured. The poor guy. He is such a trooper usually, but this was extraordinary. Being the weekend adjacent to Christmas, I worry that he won't see much progress until next week.

Editorial Comments by Lynn: I just added the photo of the youngest grandchild, Drew, who lunged into Santa's arms upon Santa's arrival. Drew has a special bond with Jim (aka Grampy), and I think provides an element of comic relief and "youth" that no medicine could provide. Here's the most precious moment of Christmas (captured on film, anyway) of 2008...

Silent Night?

We're closing in on Christmas, and as luck would have it, Jim's chemo is in its off week, so we can avoid the roads clogged with shoppers and snowbanks.  It has snowed since Friday (for our more distant readers) and the song "Let it snow, Let it snow, Let it snow" is really beginning to rub me the wrong way.

Jim's experiencing  a new set of symptoms, with some numbness and tingling in his hands and feet, and some "different" feelings after this course of chemo.  He is colder than normal, and has lots of unexplained back pain (given that he has enough meds to down a Clydesdale.)  Along with that has come some sense of frustration at not being able to sit at the computer as long as he would like.  He has done yeoman's duty going through literally cartons of papers, sorting and filing. Both of us are life-long hoarders, and feel it is important to get on top of this.

Hope this Christmas is wonderful for those of you who celebrate it.  Remember to treasure those who matter to you, both the young and the old... the ones you love, the ones who challenge you and those who need you.   They are the very essence of life.

Merry Christmas... from Jim, Linda, Lynn and the gang, Laura, Drew and Matthew

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!!