When it Rains, it Pours

The road to BIDMC must be getting threadbare with all our travels in and out. Glad  it is only about 7 miles.  Last weekend Jim saw some fairly dramatic improvement in his level of pain, and although that only lasted for a couple of days, it was a reprieve that reminded him what he's going through all of this for.  He  has had either chemo or radiation every week-day in the past 2 weeks except yesterday.  Today we are back on the daily schedule, but if the radiation he receives is helping, I am all for it!   Lynn has been fantastic helping out with Drew, or driving whenever it is necessary. 

Driving in the medical area is a little harrowing, between the gridlock and constant red lights. It takes 15 minutes to get to the edge of the area, and today 20 minutes to slowly wade in.  

How do people do this every day, year after year?

Speaking of wading... we have a leak in our flat roof which was applied probably 25 years ago. Last night we had buckets festooning spots in the halls, down in the cellar, and water was running down the walls of my most treasured dining room.  Funny how we identify with inanimate objects.  I have never been much of a Ugg person, nor Coach bags, nor a fan of Burbury, but my dining room is all me, and yes, I am very sentimental about it.  So  I am off to try to gently finesse the tea-colored water stains off one section.  

Can anyone recommend someone who does flat rubber roofing?

Bonus Quote

Quotations are among my most treasured things. They are free, glib, require no dusting, and can be shared with everyone! So there will be a feature between some full-fledged posts, that contain only a quote that strikes my fancy.  Here is the one for today: 

"Once, in the wilds of Afghanistan, I lost my corkscrew, and we were forced to live on nothing but food and water for days.  --- W.C. Fields, "My Little Chickadee"

Red Tape

"My Choicest plans have fallen thru, my airiest castles tumbled over

Because of Lines I neatly drew, then later neatly stumbled over."

-Peet Hein  from "Grooks"

The past week has been pretty crummy in the pain management department for Jim.  His back is incredibly painful, and he is anxious for them to start radiation on the most egregious places. We are scheduled for them to plot the places they will radiate, then they fashion what can be best visualized as a stencil made out of special material that will target the painful spots yet protect all other areas, including  his organs, from unnecessary exposure.  He tolerated the radiation perfectly last time, and we hope for the same results.

Other than that, this week has been a time of some of the quiet reflection I've been hiding from for months.  I have joked, in the past,  about marketing a bumper sticker that says, 

 "This is NOT what I expected".  Most of us could relate to this on some level.  Well, it is a cliche come true, in spades, here in the happy valley we call home. 

Clearly, this illness is not what this family expected.   Frankly, Jim has always planned on working into his mid-seventies and beyond, and with luck, that still may be the case, following the example of several of his closest colleagues who are still going strong into their 80's.   He is dedicated to the work of Radiation, Science and Health, (RSH) the non-profit he created.  For many years he worked two jobs, 40 hrs/week for the Commonwealth, and after dinner and on weekends, another 40 or so,  carrying on the mission of RSH.  

In brief, he had a 10 year contract with the Japanese utilities which culminated in a data document that summarized all the studies that prove low-level radiation to be stimulatory to   (and good for) the immune system, and not deleterious down to the last molecule, as the regs. currently stand.   Life, (his, mine and the kids) rotated around this entity, before finally absorbing it as a full fledged member of the family.  This was HIS baby.    So first the Japanese contract ended, the bulk of the work done, and then Jim's health made it hard to find the energy he had always lavished on it.  His conviction remains intact, but the flesh is weak.... sitting up for more than a few minutes is too painful.  

I can't really believe  any of this.  We are relatively young,  I plead in my head.  We never in a million years expected to need Long Term Disability.  Good grief!  Fifteen minutes ago I was 38.  

Looking past the pills and oxygen, I see a 30 year accumulation of  more stuff than anyone can imagine.  The frugal side of me has resisted tossing anything useful until all my pigeons leave the roost.  They might need it says the Marie Barone side of my personality.

SO I have a plan . (Who was that laughing? I'll have no cynics here!)   I have a giant roll of red duct tape and I am going to tackle the attic,  Now it is cold as icicles up there, spitting in the eye of the explanation for why the rest of the house is cold. ("Heat rises, so it all accumulates in the attic" NOT) Everything to pitch out will be prominently marked with wide red tape.  All you blog readers can come by on April Fools day and take as many red-taped pieces as you can carry.  Okay?  Fair enough?  With work I will do the cellar too.  Done.

Next problem?

Living in the Moment

Lynn gave me a little nudge to write something in the blog, updating since the last entry. Actually, it is nice to be able to report that it has been a quiet week since Jim came home from his stay at BI.  We saw the doctors Monday (had hoped Lynn could also attend to get the update, but she had to stay back with Drew)  and they are planning more palliative radiation (pain relief, not to kill the cancer) to his back and hips. 

Following that there will be two more courses of chemotherapy, so in all likelihood the stem cell transplant won't be happening until March at the earliest.  That's okay.  As long as the chemo keeps driving the numbers further and further down, his chances of a successful transplant are improved.

Emotionally, both Jim and I are faring better than I ever would  have guessed.  We are now a 24/7 couple, but that has worked out well.  Granted, some days one of us sleeps a lot (we take turns) and the computer in Jim's home office gets quite a work out.  Overall, though, some genuine calm, a level of peace, has settled in on us both.  We're both essentially fine.  Today IS. What more could you possibly ask? 

Just 19 Words

A great email was sent to me (Thanks Judy!) that I have permenantly marked "unread" in my inbox to be sure I read it every morning as I start my day... Thought I'd share with all of those who are reading along and those who are keeping Dad close in thought, in thier prayers and in their hearts.

JUST 19 WORDS

GOD OUR FATHER,
WALK THROUGH MY HOUSE
AND TAKE AWAY ALL MY WORRIES AND ILLNESSES;
AND PLEASE WATCH OVER AND HEAL MY FAMILY
IN JESUS ' NAME. AMEN

Heeee's Baaaa-aaack....

Well, for the moment he's home, with O2, but able to sleep in his OWN bed, and hopefully able to get some true rest and some comfort from familiar surroundings (visiting old dust bunny friends that are older than I) and potential landslides....and rekindling a hatred for the squirrels, and waiting for a slip to come up from the kitchen asking what he wants to eat the next day. In fairness, that one might actually happen. If there is anything in the world that I know to my core, it's that Mom cooks to nurture, and to show love and affection.

In short, he's home and relatively comfortable, and not in need of the oxygen at the moment, but it's there if he needs it. He can hopefully get some better R n' R in his own bed (And some O n' O, too, apparently, if needed - get it? O2? Ya know? Aw, forget it...wasn't funny. Mom will laugh...that's all that counts.) She'll update when she takes off her Florence Nightingale bonnet.

I do hope he can get some rest, as many of us have experienced the agony of in-patient life, albiet usually for shorter periods - he's been in since Christmas Day -, and as a great (frequent flier in hospitals) man once said "Why the hell do they put square wheels on everything in a hospital???"

Only a few hours after the last post,  we got a call from Jim's doctor,  asking that we return Jim to BI.  He had only been home long enough for a night's sleep, when we tooling along the Jamaica Way toward the hospital.   They promptly readmitted him, once it was established that his oxygen level was quite low, and he remains there for the immediate future.  The bottom portion of both lungs have collapsed in concert with the collapse of his ribs and  vertebrae; over-medication to alleviate the pain he is in also encourages shallow breathing.  Even speaking  on the phone is exhausting.  

The GREAT news is that his most recent numbers reveal that the chemotherapy his kicking the myeloma very successfully.  This is excellent news considering that he is still hoping for a Stem Cell Transplant, which can only performed on someone whose numbers are low.  His have gone from a high of 7400 to a current level of 2800, and he began his fourth course of chemo tonight. 

Frankly, I never entirely understood what chemo really consisted of.  It was 'the man behind the curtain,' and although certain drugs were commonly involved (tamoxifen comes to mind)  it is substantially more direct than that, at least in Jim's case.  He is given fluids and certain preparatory meds, (anti-nausea, and now a new one for rebuilding  bone tissue) through a heparin lock. Again through the lock, they inject the actual chemo drug,  Velcade which goes in in under a minute.  Decadron, the partner drug, is taken orally.  And that's it.  Including the taking of vital signs, and a blood draw, and the normal waiting to be seen, we are usually there only about 2 hours.   In a three week period we only have to be there for treatment on four days.  The third week is for recovery from the enormity of the blasts of these borderline toxic  drugs.   

The place isn't depressing at all.  People sit reading magazines much like in a beauty shop while receiving their treatment.  The lady with snacks and lunches passes through giving away goodies.  It's quiet, passive, positive but not in a forced way, and amazingly "normal" considering the miracles that are taking place.      

Irrespective of how Jim's particular experience plays out, one lesson learned here is to take a gentler view of the pharmaceutical companies who arm patients to confront horrible diseases and fight back, head on.  In spite of admitted imperfections, they fund the development, testing, and long vetting process. We owe a huge debt of gratitude to those who have brought us so very far.

The Music of the Night

Jim was released from BI around 6 tonight, having passed the tests performed on him. Primarily, they were looking more closely for pneumonia, and the second CT scan revealed little new information.  The problem seems to be that his lower lungs aren't being supported by his rib cage anymore, so it is difficult to get a clear image of anything going on there.  They have put him on antibiotics.  His breathing is labored when he becomes active (active, like when he scratches his ear, not like shoveling snow).  I think supplemental oxygen may not be far away.

I once had pneumonia, and I clearly remember the variety of odd sounds emanating from my chest. Crackles, a noise that resembled carbonation; creaking like a door hinge, and funny, baby sounds like a Stephen King movie. Now they are emanating from Jim.  And what I thought was within  turns out to be audible. At times he is a veritable percussion section, and the rest his apnea breathing is unnerving.

They will address his vision next with an ophthalmological surgeon, in part to determine if the myeloma is pressing on his optic nerve.  Not sure what that would mean in practical terms, but Jim's ability to read exceeds his need for several other senses, and I can't imagine... just can't go there.

Our steam heating system has a communication of its own.  One radiator hisses, while another taps back in Morse-code.  A tall pipe bangs rhythmically, starting like striding footfalls, then abruptly doubling its measure without explanation.   Then we hear something like a child sighing .....or is that Jim's breathing?

The #@**& squirrels are still with us.  Their scampering become the melody line  that joins the afore-mentioned symphony.  As they frolic absurdly to and fro, I picture a Tom and Jerry cartoon. I just pray one of them doesn't get clothes-lined by an ancient electrical wire, plunging us all into darkness. I know I need an exterminator, but what with the snow outside where a ladder would go, and the bedlam that is in my attic, I firmly pull the pillow over my head, and hope for the best. (Interpret that as you wish.)  

At least we can retire the damn  jingle bells for another year.