Apples and Oranges

It's probably common to look at another's, a loved one's terrible suffering and think that complaining about something of "yours", feeling anxious, or fearing your own situation, whatever it may be is weakness.  We shouldn't do it.  Why not?  Is it because to do so diminishes our acknowledgment of our beloved's pain?   Will it make him think, "What are you complaining about?"

I was at the dentist the other day undergoing an especially irksome crown replacement.  It ended with the crown damaged and me having to schedule the same procedure next week.  I was grumbling when I came out and then had "the" thought.  How can I complain about something so petty to Mark?  But how could I not?  It was a legitimate irriation.  We've been married 33 years and why would I suddenly stop sharing my own troubles?  That would mean that he couldn't help, advise, and listen.  It would be yet another way that he is cut off from the "normal" world. 

Maybe what we should do, insead of keeping our irritations inside (and maybe building resentment) is to go ahead and complain, then look at him and be inspired by him to handle it. 

Scanning

There will be a scan soon, which is scary for me, and I am sure, for Mark.  Dr. Smith clearly wanted Mark to agree to a CT scan but because Mark is the patient and the center of the team, he decides.  He was hesitating and the doc met my eyes.  I dropped the ball.  I should have said, "You should really have that scan," and he'd have done it.  As it is, we decided on it back in the infusion room after Patty came back with a prescription for higher dosage pain medication.  She told me (he was in the men's room) that he should have it before he retires (probably a money issue) and then wouldn't need another.  I wonder, but yes, I think I knew what she meant by that.  I said that I'd encourage him to go for it, which he did right away.   The appointment is for Tuesday, August 30th.  He admitted later to Annie that there "is always the fear of what they'll find".   You can't hide from the truth revealed in a scan.  You can't be in denial. 

I don't think I've been in denial.  You get used to the status quo: lots of pain meds, chemo every other week, seeing an oncologist, living with cancer as it takes an ever larger role in our life, knowing that you won't get to have the retirement and old age together that you always thought you'd have.  You can get used to seeing your husband unable to sit comfortably, to watching him run to the bathroom every hour or so.  You get used to the increasingly shrinking world we both inhabit as "people of cancer".  You can actually get used to terrible things like the cliched frog gets used to be in increasingly warm water until it boils.  This scan results will be like the temperature being turned up under the poor frog in the water.  The frog will get used to that too.  The cycle begins again: shock, sadness, acceptance.  How long will the frog last though?  How many cycles?

Offering Hope

It's natural that people want to reach out and offer something, anything, to the person who must live with cancer.  It's natural too, that people might not know what to say, or do.  I've been in their shoes. Now I'm in the painful shoes of someone whose best-beloved lives with the disease.  At least for me,  one thing not to do is to  forward "good news" or "hopeful" articles about cancer cures, advances, and clinical trials. http://www.latimes.com/health/la-he-0811-cancer-therapy-20110811,0,1073777.story  Certainly we can be happy for every step toward treatments that ease people's suffering, offer remission, or even cures.  Twenty years down the road, maybe this treatment will be the "gold standard" and that's wonderful for patients, families, and even my own sons, please God forbid.  But it's not useful, hopeful, nor helpful to us right now today. 

What's an analogy here?  An aid worker happily tells a Somalian mother, "Great news in the midst of this famine!  We may have a new way to deliver food and medicine to starving children!  It's been tested in five children in Bangladesh with good results.  One day, it may help with starving people right here in Somalia!  Isn't that great news?"  Unspoken words:  Too late for you but you should be grateful anyway.

And...if you should send some sort of "cheerful, hopeful" message, please at least include a personal note to the one living with it and the one living with it second hand.  Sending it via mass "blind recipient" email is just not cool.

This is the Time

I like this Billy Joel song; parts of it reflect something of how I often feel.  Other parts, well they can be bit a funny and don't really fit!  It sounds better than it reads.

We walked on the beach beside that old hotel
They're tearing it down now
But it's just as well
I haven't shown you everything a man can do
So stay with me baby
I've got plans for you

This is the time to remember
Cause it will not last forever
These are the days
To hold on to
Cause we won't
Although we'll want to
This is the time
But time is gonna change
You've given me the best of you
And now I need the rest of you

Did you know that before you came into my life
It was some kind of miracle that I survived
Some day we will both look back
And have to laugh
We lived through a lifetime
And the aftermath

This is the time to remember
Cause it will not last forever
These are the days
To hold on to
Cause we won't
Although we want to
This is the time
But time is gonna change
I know we've got to move somehow
But I don't want to lose you know

Sometimes it's so easy
To let a day
Slip on by
Without even seeing each other at all
But this is the time you'll turn back and so will I
And those will be the days you can never recall

And so we embrace again
Behind the dunes
This beach is cold
On winter afternoons
But holding you close is like holding the summer sun
I'm warm from the memory of days to come

This is the time to remember
Cause it will not last forever
These are the days
To hold on to
But we won't
Although we'll want to
This is the time
But time is gonna change
You've given me the best of you
But now I need the rest of you

View from the Chair

Here are three important members of Mark's team: L to R: Judy, Annie, and Sherrie. They are his infusion nurses.  He was sitting in the infusion chair, hooked up to the pump. That's Mark's foot in the foreground. How strange to think we have now known them for 5 years.  What would we do without their excellent care, gentle needles, compassion, and wonderful senses of humor? 

ER

We spent some time in Seattle's Swedish Hospital Emergency Room yesterday.  My 91 year old aunt fell out of bed and dislocated her hip.  She's had both hips replaced.  It was easily "relocated" while she was under anethesia.  They kept her for observation last night.  While I sat watching her pale, trembling form in that hard edged, machine laden room, I thought, "Thank God it's not Mark."  That was an unworthy thought but there it is.  Last time I was in an ER, I watched my mother in law die.  The ER people do amazing work but it's just somewhere that I don't want to go.

Collateral Damage

Also known as side effects.  Mark takes many drugs.  Some for the cancer, others for high blood pressure (caused by the cancer drugs), and edema, caused by tissue damage from two rounds of radiation and the surgery.  Sometimes he takes antibiotics too.   And of course, several for pain.  As you can imagine, these medications are horrifyingly expensive and if not for insurance, we'd be living under a bridge.  We do have co pays but it could be far worse.  The fear and anxiety that at times overwhelms me must be excruciating for those without coverage.  In addition to the financial side effects, there are the physical.  His oral cancer drug has these side effects, among others:  body aches, joint aches, high blood pressure, flu like symptoms, rash and peeling skin on hands and feet, and this one:  slowed breathing rate that could stop.  In short "death".  Drugs!  He can't live without them and with them, life is just harder.  But it is life.