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Friday, March 9, 2018

Gonna Roll the Bones



...on my part I will venture all my winnings 
of tonight,
and throw in the world 
and everything in it 
for a side bet. 
You will wager your life, 
and on the side your soul. 
You to roll the dice. 
What's your pleasure?

-- the Big Gambler

"It's a bet," 
he said.


It's funny how one person's idea can lead you to another, then another, then finally something you incorporate into your own life. I've always been a big fan of the rock band Rush. One of their songs, Roll the Bones, is loosely based on this short story Gonna Roll the Bones by Fritz Leiber. It basically tells the tale of a washed up gambler, weary of his mundane life, heading to the local gambling establishment and taking on The Big Gambler himself in a game of craps (bones, dice).

I encourage you to take a bit of time and read it through.

I'm not a gambler, but deciding how (and if) to treat a cancer diagnosis can be a gamble. As much as we like to think Western Medicine has wrestled all the Big Problems down, it has not. Sometimes there are no clear directions, but only past events which can be summarized in statistical studies and converted into treatment protocols.

While I don't see a better way to do it, it's not always conclusive or instructive (prescriptive) when considering what to do next.

I had a friend who said, 
"That's why they call it practicing medicine."

What Decision?


You may ask, "what decision is there to make? Of course you do the treatments so long as the doctors recommend it, right?"

What goes into this decision? For me, to continue "maintenance" therapy consists of an every-two-weeks trip to the oncologist for a shot in the stomach. It's not so much the associated blood draw or the actual shot in the stomach that's so difficult any more. It's the side effects of the shot in the stomach that wear me down.

The stuff they inject me with is nasty. It often leaves a nasty bruise; plus it has other side effects. The side effects can vary (surprisingly) shot-to-shot. Sometimes I get "flu like" symptoms; other times I'm just plain tired. The one major constant is, however: worsening neuropathy. What is "neuropathy"? It's damage to nerve endings, primary in the hands and feet, but it can also affect, say, your digestive system or other areas. The drug I'm taking is "neuro-toxic". It's not "supposed" to contribute to worsening neuropathy (and I'm sure this is in the pamphlet or TV commercial), but it's wrong.

I've been taking this drug in this fashion pretty much since early 2015. They gave me this drug upon my first diagnosis back in May 2014, but in considerably higher doses via IV.

The problem is this neuropathy is a constant painful nuisance. It's actually more than a nuisance, it can keep me up at night, makes it difficult to walk. I take medicine for it, but it's not enough. It feels like my feet are asleep constantly, but on the verge of waking up, when the pins and needles and ache comes in. All the time. It's exhausting.

The other side effect is on my gut, my digestion. It slows it to a crawl or makes me really irregular. It's too-much-information, but I used to be extremely regular. I have more medicine(s) I take for this, but I can tell you: you don't want to take them. Let's just say it's also a painful nuisance.

And so that's the decision:

when does quality of life deteriorate 
enough to risk quantity (or lack) of life 
by skipping out on the treatment?

It's easy to tell someone else to continue, because you don't share their pain or context, you just want them to live. From my perspective, I certainly do not want to expire, but I also do not want to suffer every minute of whatever life-span I have left. I'm not here to be propped up so people can look at me, see that "I look good" and continue on the way.

The Game Table


This is one of those decisions you don't want to make, and believe me: the physicians will not (can not) make this for you, either, so in the end I'm in a familiar position: on my own. Forget the dialysis end of things, which has it's own large set of painful nuisances, too, and only think about the Big Cancer Ones.

For one thing I'd like to know if the "maintenance" chemo is actually doing anything. Strangely, this question can't be answered. It's just not known if remission is continued because of the maintenance or it just continues on its own. It's this not knowing that makes it difficult to know what to do.

The question is: if I can't take the side-effects any longer, do I (can I) stop the treatment? Always the doctors (and family and friends) recommend continued treatment, because "the data" shows it's better. Even though they can't say one way or another, in your particular case, the one case that actually matters to you, what will happen. Nor can they say the medicine is the actual reason my remission is holding.

How long can you stand in the fire
even while others encourage you to do so

Now you're rolling the bones. This is one decision you can't get wrong because it can kill you. Are you ready to take the Big Dive into the Cosmic Craps Table? Not to seem too dramatic, but that's a gist of it. The other problem is, if I relapse, certainly I will be off the kidney transplant list, and my quality of life will degrade more, possibly til the end.

So, what to do? Get out there and rock. And roll the bones. But it's not so easy, is it?



Sunday, November 19, 2017

Forget About It - Part III - Me: 3, Myeloma: 0

And my zero
To your power of ten
Equals nothing at all

-- Ian Anderson

Today is the anniversary of my (first) stem-cell transplant (SCT). November 19, 2014. I've had only the one, but I'll say "first". Myeloma trains you to use such hedging. Many SCT's are done on an outpatient basis, but my case was complicated enough (by dialysis, etc.) that my doctor wanted me inpatient. So, for 17 days I lived in the "bubble" up on the 9th floor at the Duke University Hospital, which is the Bone Marrow ward in the cancer hospital. It's "a bubble" because it has double entry doors, the inner door must be opened from the inside by an attendant. The ward maintains positive air pressure: all the air flows out of there and into the main hospital. The individual rooms are similarly higher pressure than even the ward: pushing more air (and bugs) out every time the door is opened. The rooms have individual HEPA filtered air; you won't see a dust mote in a sunbeam in there.

On this day in 2014 the nurses began by writing my white blood cell count on a small white-board in my room.

Today, three years ago it was: 0.

That means: 0 detectable white blood cells, which means if you come in contact with some nasty bug, quite possibly you could be history: your body can't fight it off with 0 soldiers. I remember feeling extremely vulnerable during this time.

Waiting again; waiting 
for 0 to become not-0 

It then becomes part of the daily routine. The first thing in the morning a nurse writes the number for the day, based on blood draw in the mid-to-late-night. 0. Followed by 0. Then 0.1 (not 0!) and so on up and up, hopefully, waiting for "engraftment" which means your new stem cells had found their way back into your bone marrow (however they do that), and they're instructing everyone else to do what they should: make good white blood cells.

Conceptually it sounds easy; but it's beautifully, horribly complicated.

Rocket out of Here


Once the "0" was written down, I distinctly remember thinking, Ok, I just need to get past this and down the "timeline" as fast as I can, whatever that means. I just need to tick off the hours, days, weeks to get away from this and leave it far behind.

Seemed like just then I was living hour to hour, day to day, waiting for that 0 to become not-0. They give you some nasty chemo drugs to kill of your bone marrow; and as a side effect it kills off a good many other things, white blood cells included. You remember them? They fight off all the nasty things that try to (or do) get into your body. And until your white-count is 0, you don't think about how many nasty things that really is: always every day trying to get in, or getting in and just "being handled".

My days there were filled with all kinds of hospital activity, mostly things I want to forget. Blood transfusions, IV drips of red blood cells or Magnesium, dialysis, industrial strength diarrhea, crappy food, ultra-thin toilet paper, endless beeping machines, Sunday butt swab, frequent nurse checks (even throughout the nights), little sleep, mandatory exercise.

Every day the doctors, pharmacist, nurse(s) would visit everyone's room on the floor on "their rounds". This is more than a little intimidating because you have at least 5 people standing around you, in a smallish room, all looking at you or asking questions, as if you were able to do something about all this.

I, however, had months ago realized I was just riding; some people call it "handing the wheel over to God"; and maybe that's the same thing; but the main idea is: you don't control anything, Buddy, so make the best of it while it sorts itself out.

One thing I remember, though, to the positive: the way my doctors came close and listened to my lungs. It was that close human contact that is re-assuring. And it was this listening and human contact that led to the detection of a nasty bug in my lungs.

Not machines, but people;
human closeness
intently caring.

I did then have a bout with something nasty while I was not far away from 0. Once your "engraftment" hits, you sometimes get a fever (named engraftment fever, surprise!). Something got into my lungs, however; and there was much scrambling and medicine; it was more fever than they wanted to see.

There were IV antibiotics, bed-side chest x-rays, and so on. This gave me a weird feeling. It felt like it didn't really matter what the doctors were doing (even if the best, smartest things), or what their theories were, versus what is actually going on inside me. I realized again: I'm just along for the ride.

The die is cast; so it's just wait and see.

Sprung


That nasty whatever-it-was did go away, possibly done in by my new white blood cell re-enforcements, possibly from the medicine; or both. I did eventually get out of the hospital, and we came home, only to be quarantined for more many weeks more,. I was required to stay away from other people, more or less. That was fine by me because I was extremely tired, way more tired than I can ever remember being, ever. My bed was like a siren song calling me back; and the one thing I wasn't supposed to do was sleep all the time. But oh, that call.

Some people want to visit you, which is blessed, but under these circumstances, no-one should. It falls on your care-taker to turn them away; they're the ones with the disappointing news, seemingly unnecessary or off-putting to some. But, most everyone "got it" and accepted the conditions, and were not offended. Any extra fevers or bugs that come in by well-meaning souls only guarantee a return trip to the Duke Emergency Room, and possibly back in to the "bubble".

I love them all, but no thanks.

We got through this with the help of family and friends, many of which from our church. You can't do this without family and friends. You can't. If you don't have faith, I'm not sure what you do; when you close your eyes and beg for mercy, to whom are you begging? The Universe? It doesn't care. Maybe pray without really praying.

By the Way: Did We Mention the "High-Risk" Profile


Everything seemed to be going as well as could be expected at the "SCT +3 month" mark. I had a routine return visit with my transplant doctor, and we thought it would be all great, high-fives and back-slaps. But, no. There was this problem with my "cytogenetics" report from when the MM was active, about a year ago.

Turns out there were some "high risk" markers; certain chromosome abnormalities and so on.

This was (devastating) news to us; either we had missed this detail from earlier discussions, or it was never made clear to us until now. Either way it did not matter. This was news to us.

What did it mean, though? There is much debate in medical circles (as we've since learned), but my transplant doc was afraid it meant I'd relapse within a year, based on her clinical experience. Let's face it, she sees many many MM patients; more than most hospitals. My blood tests possibly indicated "active disease" still, she said.

They wanted me to do 
another stem cell transplant. 
Like within the next few weeks.

There was no way I could do another one just then. This news was crushing. Absolutely crushing.

So, after much hand-wringing, we got another opinion from a different doctor over at UNC Hospitals. He's a well-respected Myeloma doctor, also, but not a "transplant doctor", per se. To make a long story short, his opinion was: you're in complete stringent remission. No second transplant is necessary. That blood test was higher than normal, yes; but, because of my kidney failure, he said it was expected to be higher than normal; it did not necessarily mean the disease was still active.

This is precisely why I tell people not to be shy about seeking out second (or third) opinions from specialists in the field. It's your butt on the line, so don't feel so bound to one doctor's opinion. Especially with a complicated disease like MM.

A bone marrow biopsy was ordered to find out once and for all; and it was, thankfully, negative. As in: "MRD Negative", which is pretty much the most sensitive test that can be done in this day and age. Basically for that test they count 2 million of your cells and look for any Myeloma cells in there. I had: 0. By the way, back in May of 2014, when this all began, that number would have been: 1 million.

But this was a different, better kind of 0. But of course it comes with its own caveats. Myeloma can be "patchy" within bone marrow, so just because they didn't detect any within that one place, it's possible it's still brewing somewhere else. Doctors have to say these things, and it keeps you from becoming too overreaching in terms of your outlook.


The Negative of Bad is: Good


On this third anniversary, I am both joyful and sad. I am sad because I know some MM patients that did not make it very far past their diagnosis. So, it makes me wonder why I were spared and they were not, especially if the doctors' opinion was you are "high risk" for relapse, and for MM relapse often means: bad news.

I think this is what they refer to as "survivor's guilt".

This also put my faith in peril, because why are some spared and some not? Not because of their lack or abundance of faith, their purity of faith, their attendance record on Sundays?

He causes his sun to rise on the evil 
and the good, and sends rain on the 
righteous and the unrighteous

Matthew 5:45

Now I look back from my "timeline-rocket", and I'm thankful I am far away from that time and place, but I'm keenly aware that others are back there now, or they didn't make it away from their 0 in their own time-rockets. I feel like I'm deserving of this perspective; to a certain extent I have earned it. And I think (hope) that those who did not make it would approve; we honor their memory, also.

I do have some fond memories of those times, especially the care from the doctors and nurses. They are so very dedicated and invested in their patients. I do not know how they do it. Also, I remember the personal contact some people made during this time.

Today, I choose to remember these fond memories while acknowledging those who have gone.

It's sometimes the littlest of things that make the difference, so if you know someone going through a similar situation, maybe try these:
  • We have some (older) friends from our church, they are the sweetest people. She sent me several hand-written cards and notes. I would take one of these over 6 billion "likes" on any social media; any day of the week.
  • Last year, on the two-year anniversary we had a party here at the house. Several of my friends got involved and we decided to raise money for UNC and Duke Hospitals by shaving our heads. Idea was if we got $1000 the lot of us would do it. I said I'd do it for $200. Turns out we raised over $2000 for this event, thanks to the generosity of our friends, their families, and their friends.
  • This year my wife and I started a support group for Multiple Myeloma patients and care-givers. Survivorship comes with some obligation, I think, and we aim to provide a supportive community to those near us suffering from this same illness. We're affiliated with the International Myeloma Foundation
    • Other causes I feel passionate about: donating blood; and organ donation.
  • One of our friends prepared for us a "basket" of goodies for the hospital stay
  • My sis-in-law and mom, and my kids, made some holiday decorations and put them up outside my room in the transplant-clinic on the 9th floor. We had lights and a great "fireplace" scene; and an "Elf-on-the-Shelf" which hung in a face mask on my door, just like a hammock.
  • My pastor spent time with me, even in the "bubble". Even when we did not talk, I just laid there, and when I opened one eye: he was just there. Just there. Sometimes when you open your eyes and you see someone there, close, it's support enough.
  • My sis-in-law came with my mom to help out, and she was a blessing
  • We spent Thanksgiving 2014 in the "bubble". My mom made dinner for the kids at the house. My wife and I had dinner at the bedside, such as it was. Some volunteers brought some desserts by, and that was wonderful. I didn't eat any, but just seeing someone doing that on their day off was awesome. My mom and the kids came by after. 
Maybe the most thankful Thanksgiving ever.



Monday, November 13, 2017

Forget About It - Part II - Permanent Waves


A simple kind mirror 
To reflect upon our own 
All the busy little creatures 
Chasing out their destinies 
Living in their pools 
They soon forget about the sea... 

Neil Peart (Permanent Waves, 1979)


How does one keep it together when the universe seems set against you? You cling desperately to those you love, that's how. And if you have faith, you cling to it like you never imagined you would ever.

I still can remember the day the doctor dropped the "C" word on me. Not long after I felt like I was all alone. No human truly wants to be alone, I think it goes against our nature. But cancer fights you in weird and vicious ways; and it's relentless. I found that I had to put it in its perspective, finally, but this is not easy by any stretch.

It wears you down after a while; and survival, while the dearest privilege, comes with a price. What price, you ask, can't you just be glad you've made it this far, celebrate your life? Yes. But I have met some people with whom I've had a good relationship that did not make it. Why they should not and I should is a mystery, but finally not up to me. I know some others still fighting that crucial, definitive fight of their life.

One thing the cancer did not count on, or predict, was that love is bigger.

No matter what else happens in your life, only love matters or endures forever. The rest dies off eventually to be forgotten; but love goes on. Forever.
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.
8 Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. 
 1 Corinthians 13
My faith is integrated into my own life, obviously. But, it took others to bring it forth, most notably my own wife. I always say anything good that is in my life came to be because of her; and mostly that's true.  I have written before about the dedication and love demonstrated by my wife during this ordeal. And again about the memories I have waiting for her to return to my bedside during my stem-cell transplant.

Permanent Waves



I always smile (maybe wryly) and think about Things whenever I see the Permanent Waves album cover, shown here. Growing up I was introduced by my (drummer) friends to the rock band Rush, and I became a rabid fan. Rush has made many, many albums over the years, and of course eventually discussions and debates as to their "best album ever" come up among their fans. I've never had a doubt about my personal choice about this, but it differs from the generally-accepted "best" album (let's say 1984 and prior).

Most people say Moving Pictures is Rush's best work to that date. I also love it, and I understand where they're coming from. That album represents a pinnacle (not the pinnacle) of their musicianship, and the move to the complete album with 5-minute-ish long format.

However, my favorite always was, and is still: Permanent Waves.

This one was released just before Moving Pictures. To me, it shows the major transition in progress in this band; it's evolution in motion. And Permanent Waves is a metaphor on many layers. Without Permanent Waves, Moving Pictures doesn't happen. The album itself is like a wave, both smoothing out and washing away, mixing up what came before, but it's also something to be ridden forward. Like Life itself, this band is never shy about washing away what is in favor of what must be. To me this is the essence of the chaos which is Life: ever-evolving, wandering and seeking in small steps, sometimes catastrophically washing away what we have; but always replacing it with something more beautiful.

And lately I've been attracted to the album artwork (remember when that was "a thing"?). Perhaps now this one is easy to see why I love it. I have to say the casual way the man is waving always makes me chuckle. Living in our pools we soon forget about the sea. Even after the sea has washed our things away how quickly we go back to ignoring the fact that it's in control, not us.

Permanent Waves: Family and Friends


In addition to my wife, my entire family played a key role in keeping me going. And some close friends, also.

This is the day before I went into the Duke Cancer ward at Duke University Hospital in 2014. This day one of our close friends shaved my hair off for me. It seems like a minor thing to do, but someone taking the time out of their own busy day to do this is important to me. I wanted my hair shaved off before going into the hospital because I knew it would fall out anyway.

She had studied the universe her entire life, 
but had overlooked its clearest message: 
For small creatures such as we 
the vastness is bearable only through love.

-- Carl Sagan (Contact)

It's true. For small creatures such as we the vastness is bearable only though love whose tempo is kept by another Permanent Wave: the beat of our hearts.

          

Saturday, November 4, 2017

Forget About It - Part I

Forget about it
I'll split and I'll be gone
And you'll have memories
You'll find hard to ignore



My doctor told me in early 2015 that despite my treatments it was "pretty certain" that'd relapse within 1 year of my original diagnosis (May 2014). And relapse for Multiple Myeloma is never good news.

But as of 2017, three years later, that has not happened; either b/c of medical wizardry, wild cosmic luck, or because so many people (more than I could have ever imagined) prayed for me. You pick the one(s) that fits your view of the universe.

This month (Nov) 2014 was a memorable month for me and my family. And not because of some bad mustache I grew and shaved off. In this month 3 years ago I had my blood pumped out for 8+hours for 2 days over what would be this coming weekend, Nov. 8-9 at the Duke University Hospital Adult Bone Marrow Transplant (ABMT) clinic.

We've made an inordinate number of trips there before and since.

Of course my wife Judy was there with me; but we remember that our daughter Amelia was at a church retreat (Pilgrimage '14) on that weekend, and our boys, Daniel and Eric, just 13 and 10 at the time basically had to take care of themselves during those two days.

 Turns out all of our views 
of the world were being 
re-worked this month in 2014.

Following this collection I was lucky enough to spend 17 days in the cancer ward beginning November 16 at Duke Hospital, including over Thanksgiving that year.

I remember a lot of things about this holiday, but one was about one of my doctors. She and her family were going around door to door in the cancer ward Thanksgiving Day, visiting people, giving out desserts they had made. On her day off. Basically they had prepared and sacrificed their holiday to be at the hospital: a place she'd almost certainly already been at every other damn day and night that year.

But here they were, giving again, in a non-medical, but important, way.


Forget about it
If we chance to meet somewhere
Don't think it's 'cause 
I'm trying to reconcile


Many forgettable things happen to your body before and after they give you "the real chemo" to kill off your bone marrow. However, many memorable and sometimes humorous things happen to you, even if it takes some years to appreciate it as humor.

It's these better memories I'd rather share over the course of this month in 2017. Here are some good (if not funny) memories, particularly about the nurses at the Duke ABMT, and in the Duke Hospital Cancer Ward (9th floor!).

November 8-9, 2014

Not much to do but Sudoko; and wait
Before you can do a stem-cell transplant (SCT), you have to have stem cells. For my SCT they use my own stem cells. They collect your stem cells out of your blood by cycling your blood into a machine that separates them from the rest of your blood. It's a very interesting process, if you can get over the weirdness of watching your blood leave your body and go into a machine and (hopefully!) come back.

This process takes time; a lot of time, like hours and hours. We spent 8+ hours for a couple days at the ABMT doing it. 

Keeping up the humor and the stem-cell count with such great drugs like Neupogen; Mozobil, one that kicks the stem cells out of your bone marrow and into the bloodstream. I called that one "Beelzebub" because of what it did to my intestinal tract.





My Favorite Visitor
I always joked that Coach K (Duke basketball) came to "visit" me. Seemed like everywhere I went in Duke Hospital facilities, there he was!

I never got tired of this joke, but no-one else seemed to care.











One of my stem-cell colletcion nurses



Nurses make the hospital. Someone told me that once. Now that I have spent the better part of a month in the hospital, watching, and being cared for, I agree. I have had good ones, bad ones, and great ones.

The nurses at the ABMT and in the cancer ward over at Duke Hospital were amazingly good.










Other (perhaps) fond memories of those days:
  • Listening to one phlebotomist brag about her IV-placement prowess only to watch her make a (painful) mess of my left hand's veins and have to move on over to my right hand late on a Sunday night, my very first day in the hospital.
  • One nurse literally climbing up on my bed, straddling me, and applying the "sternum rub" to wake me up after my "post-chemo nap", from which neither my wife nor regular nurse could wake me.
  • Uncommon kindness by one of my nurses to track down and install a 4" foam pad under my sheets on the bed I was in for 17 nights after several nights without.
  • Measuring my bodily fluid output for 2 weeks+ every time, every day. Yes I had to catch #1; and also #2 into a "hat" on the toilet. I once mentioned that once you go into the hospital your dignity is the first thing to go.
  • Did I mention the "MRSA" tests? Yep, every Sunday night was "ass swab" night, and yes it's as embarrassing and awkward as it sounds. Somebody had to do it and somebody has to endure it.
  • The countless times the nurses wiped down my access port. It was in my neck, and the plastic ends would "click" together as they cleaned them every time they took blood samples. And this happened so often that this "clicking" sound is engrained into my memory and it makes me literally cringe now thinking about it (maybe that's not such a "good" memory).



Saturday, October 21, 2017

Life Moves Pretty Fast


Life moves pretty fast.
If you don't stop and look around
once in a while, you could miss it.
Ferris Bueller

It's true, the pace of life nowadays is blinding. You see most people running this way and that, mostly with their face cast downward to their smart-phone. This relatively new invention might be the stupidest thing ever invented.

I see (esp. young) people "socializing" over this layer of technology even when they're in the same room, sitting around the same table, or whatever. I'm seemingly always running my sons off of screens during the sunny weekend days. But, it's not just them, it's pretty much everyone. At fire-side gatherings, dinners, parties, even on the highway, there's that familiar picture of someone gazing at the phone, hoping to catch the next trending zinger, hoping not to miss out on that latest post or e-mail.

I do it, too, but lately I've removed social media apps from my phone in an attempt to stop. My engagement with social media is significantly less today vs a few years ago. But still, there are the texts, games, e-mails, etc. just one quick look or click away. I just sent a text with a picture of our dinner to my mom just last night. Ugh.



A lot has been written on this topic, so I'm not going any further. I certainly have done my share of staring at my own smart-phone, and still do. I have a very good friend, and we disagree about the nature of socializing virtually vs. doing it in reality. Thankfully, though, unlike so many other groups of people these days, we can live with this disagreement and still be great friends.

Ironically many of the pictures I have (many shown below) came from my smart-phone. So maybe that little thing isn't so bad after all. But let's take a break from the "sugar rush" of checking that latest notification.

I have realized it's 
more important to live 
the things we're living 
than to publish the things 
we're living so others can see.

Happy Birthday


So what was the real reason behind this blog post?

Today is my daughter's 19th birthday!

I was looking at pictures and so on on my computer, remembering all those things we've done over the years. It occurred to me in a real way how fast life goes by. Seems like yesterday we were driving to the hospital to get her delivered.


I started collecting up the photos and before I knew it there we were: together all these 19 years. My daughter has been there for me through thick and thin, and we've spent so many times together. 


Here they are, some of them, brought together in a short tribute to our relationship.

Happy Birthday to my loving daughter, Amelia!



Tuesday, July 25, 2017

Parenting with Multiple Myeloma -- Part II



My riding partner used to work for a living
He take the backseat of all that he was given

He let you rise and take the fall
...
He'll take the chain
He'll take the ball
He was my favorite friend of all


-- Kings of Leon


Not too long ago we had one of those family meetings with one of our kids. These are the ones you don't want to have, but in order to keep your kids on track, they need to happen. We're pretty progressive in our parenting; at least compared to how we were brought up, or compare to what you would assume if you knew were, say, church-going-believers. That's not to say we've abandoned everything we learned from our own parents or the old time believers. Much of what we stand for came from them; but also it's tempered by our own decades of living, and it's colored by the realities of modern life. In end, though, we are also pretty strict when it comes to the relatively few requirements we place on our kids.

Having cancer doesn't give you a free pass 
from family problems.

In the end I think the only real end goal I can fight for is: I hope my kids accept that we are always their friend; and we always have been. It might seem to them like we're tyrants and our rules are arbitrary; or that we're hard on them. We require excellence, but give freedom. We're not placating, but we are encouraging. We do not foster false hopes. We make the hard decisions and we stay true to our beliefs. Like any good friend, we do not allow our kids to live up to less. We're not necessarily always friendly.




For me the scene above always delivered a strong message of love between two people. In this case it's two people from different cultures, different values, different pasts and futures. But some things translate. Friends do not always get along. Friends sometimes tell you the hard truths, ones that lesser people would let slip by. Sometimes friends have to let you find out for yourself. But in the end, different people can connect to and love each other.

Seeing my kids grow up and now depart from the nest (as it were) brings to mind such devotion. To understand, you need to watch the movie closely, and you have to watch a child grow and become an adult. The two men in this scene are not initially friendly, and in fact the one declaring the friendship was the more reluctant one. Parents aren't usually on the more-reluctance side, but my sentiment to my children is the same.

The other aspect of the video is that kids give back to you something that you thought you'd lost. But it's something you needed all along. They had it, but in the end you're glad they had it, and when they give it back it's more.

Sometimes our kids feel like we're coming down on them or being too strict, or whatever. Sometimes it feels like we're pressing too many rules. When they are heading out on their own into an unknown future, one thing I hope they remember is we are their friends, we will always be their friend.

Do you see that you are my friend?
Can you see that I will always be your friend?

Wednesday, July 19, 2017

Parenting with Multiple Myeloma - Part I



When there's nowhere else to run
Is there room for one more son
One more son
If you can hold on
If you can hold on, hold on
I want to stand up, I want to let go
You know, you know - no you don't, you don't
I want to shine on in the hearts of men
I want a meaning from the back of my broken hand

-- The Killers

I've not written about this topic, partly because it's too difficult, but also because it is too vast for someone like me to put into words.

It might seem obvious to always take the "cancer hero" route and be the ideal person with cancer or the ideal person with kidney failure or the ideal whatever you can be. But we know (well, some of us know) being the ideal anything is impossible. But if we're not perfect, perhaps at least we can be excellent.

I don't know if as a parent I'm being excellent, a good role model, being a terrible one. Even in my previous life, I didn't know this; but I do the best I can. If you think you're the perfect parent, maybe you're right; but, I seriously doubt it, you're almost surely deluding yourself.

Life doesn't go in a straight line. Life isn't fair; and teaching your children by example how to deal with the nasty underside of Life counts; perhaps more than teaching them how simple it is to breeze through the good times. But when things take a nasty turn away from just the average "bummer", then what?

With so much going on in our new normal life, the clinic visits twice a month, the chemo twice a month, the insurance / benefits problems as a result, the full-time job, and everything else that fills a life with 3 kids, I sometimes feel exasperated. Even without The Malady hanging on you on a daily basis, life with 3 teenagers is challenging. Even so, you want to set a positive example.

I am lucky, because my kids are great. I mean they have had to deal with some scary, real-life issues that many adults remain oblivious to; and they've held it together. For the past three years it wasn't just my own life going sideways, it was all of us.

We came close together in a way not possible before.

What to Say, What to Tell

My long-time friend Gray S. talked about this topic on more than one occasion while he was counseling me. At first my wife and I did not know what or how to tell the kids. Part of you wants to protect and shield them from the reality of what's going on. Probably because you can barely deal with it yourself, you assume there is no way a child could. But they're no dummies, and when they see you in the hospital with tubes coming out of you, or with no hair, they know something's up.

Our youngest boy was about 10 and out of school ill the day I got my Multiple Myeloma diagnosis. He was in the room with me and my wife at the time the doctor delivered the Unfortunate News. I remember feeling worse for him, because I didn't want him to have to deal with this, and especially did not want him to witness The Ugly Truth in this manner. I could see in my own mind the shockwave of this explosion crashing over him.


So you'd better think of something.

Are Things OK?

Bottom line was we wanted never to lie to our kids, but we didn't necessarily want the unfiltered story to get to them. Sometimes as it's unfolding, the story isn't known, so what can you possibly say? They needed to know what was going on, in an age-appropriate way. Kids are scared easily and they want stability. Like most of us. They want to know first and foremost if you're "going to be ok", if "things are going to be ok" If so, life can go on far as they're concerned, and that's more or less ok, and that can be that for a while. All the conditions and possibilities do not need to be enumerated, nor can they always be. Many adults can't grasp them.

Kids are more resilient than we often give them credit for.

This is the hard part of Multiple Myeloma in particular: there is no cure. In some cases remission can last a long time (many years), the disease can be managed; sometimes not. How long? No-one can say. Certainly in my case no-one can say, or has said. In late 2014 you wouldn't take a bet that I'd last this long. But you don't focus on these things when talking to the kids.

You wouldn't say every day as you were leaving for work, "Bye Johnny, I'm heading out, I might get killed in a car accident today." Or whatever; there are always conditional statements you can make, even if some of them are theoretical risks as opposed to real ones.

Lies, Damned Lies, and Statistics

Statistics are of little use to an individual cancer patient; they only show the past, and in aggregate. At first (and many times after) you want to know where your "dot" is gong to land on that "survivability" chart. But no-one can tell you in any certain terms. The data are often older, and the assumptions of the studies might or might not have taken into account your particular set of response variables. So even if they put yours into the equation(s), the answers come with sufficiently wide confidence intervals. Meaning: nobody can say for sure what the hell is going to happen to you.

The news is: everyone dies, but in the cancer patient's eyes, that day is presumably coming sooner than it otherwise would. I wrote earlier about this notion of theoretical risk and actual risk. Adults are not very good at accepting odds or averages under these conditions, so how can a child be? These are the things I think it does not pay to worry children over, especially young ones.

So, are there two different truths, or the same one presented differently? Do we always emphasize the positive outcomes to our kids (or even others), but harbor the negative ones for ourselves? "Dad's got a bad cancer, but many people live a long time" vs. "Dad's got a bad cancer and one of his friends with the same kind just died."

Where do we come down on this issue? We can't lie and say that things are "looking great" when we know you might keel over next week. Can we?

I think here this is where the difference in attitude or your point of view comes in to play. Like the old "cup half full" problem, you can play it either way. But having survived this long I do believe that focussing on positive outcomes without losing site of the reality makes a real difference. Statistics and medical science can't keep up or explain these effects, even though I believe them to be true.

People will bitch equally about the cup being half-full 
or being half-empty; either view can be an annoyance to the other.

No Free Passes on Kids' Problems

Once a nurse said to me, "I wish when someone got cancer they got a free pass from all the stuff like colds and other minor ailments." I wish that, too.

Kids' problems do not go on holiday when you have cancer. And in fact they may get some new ones as a result because their coping skills are not mature. It's unfortunate that we don't get these free passes, because with everything else, who needs more problems?

The other thing you don't think about until it happens is how your kids' friends will react. Kids are funny this way. If your parent is sick or otherwise not normal, this is a opening kids can cruelly use against each other. Childhood is a strange juxtaposition of individuality and conformity. Kids endlessly claim to be individual, but conformity is the norm.