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Monday, October 8, 2018

Sprung

So take
These broken wings
And learn to fly again
Learn to live so free

-- Mr. Mister

The Gift of Life

On September 20, 2018 I received a priceless gift: a kidney transplant. My niece's (Erin) husband, Rob, donated one of his. You have to imagine for a moment what a blessing this is, such a display of human kindness and bravery. This was the best option for my health, as encouraged by the Kidney Transplant team at Duke Hospital: a living donor. For him to do this is beyond thanks, beyond any words really. You have to seriously imagine for a minute what it would be like to give up one of your major organs for someone.

Rob answered that call. You hear people say "thank you isn't enough", and it's true. There are simply no words to cover this. Rob and I talked about this. He's a humble, unassuming man. Going through this process with him and Erin was remarkable.

I first found out about Rob's intention in June 2018, with his rigorous testing scheduled at Duke in mid-June. The time between June and September was probably the most stressful for me in my entire life. It might seem like it should be cause to celebrate, and it is. However, when the possibility is so close, and remember the intense scrutiny we're both under by the transplant team is so intense. They will boot potential donors at any sign of a health risk (which is proper, to protect their health).

After about 6 weeks, however, Rob was approved. He is healthy young man. When we got the news I was stunned, barely able to get my head around it. The surgery was scheduled for Sep. 20, and we waited. Like waiting for Christmas when you're a child, the days wore on. Judy and I know better than most that anything can go awry with medicine (with anything in life, really), and we tried not to think about those things. We kept this secret from almost everyone as long as possible, just not to get ahead of ourselves.

The day finally came and went, beginning at 5:45am arrival at Duke on September 20. Then the recovery began. I was in the hospital 4 days, Rob went home the very next day after our surgeries. The transplant team at Duke does remarkable, life-changing work. That program is so extensive and refined, and everyone on that team is top-notch. The skill of these people is remarkable; I call it Really Big Medicine.

Rob stayed with us after Erin returned home to their family (they have 2 little ones), and my brother and mom were also here tending to us. My brother was primary care-taker for Rob. I really enjoyed having the time to visit with Rob for the week.

We share something now which few people do.

Escaping Dialysis and Other Things

Kidney transplant technically isn't a "cure" for kidney failure, it's a treatment. As my dialysis doctor put it, you are trading one large set of problems (dialysis and its effects) for a much smaller, more manageable set of problems (eg, life-long immunosuppressant medicine and its associated infection risks). In exchange, you break free from dialysis and get your life back. Which is high order medicine. And taking the smaller set of more manageable problems is an absolute no-brainer.

I'd been on dialysis for 4-1/2 years, and I forgot what it was like to not be. I did it at home, overnights, which is better, but the fact is: all dialysis sucks. It took 10 hours a day which puts a major crimp in your life, takes away your free time. Not to mention many other "mini" time-wasters associated with it. And the long-term prognosis for dialysis patients is grim.

Most people associate kidneys with clearing your blood of the toxins which build up in your body every day, and eliminating it in urine. And this is true. However, kidneys perform several other key functions in your body you might not be aware of. All these do not work or are diminished in dialysis patients:

  • Regulation of blood volume
  • Regulation of blood pressure
  • Regulation of the pH of the blood
  • Regulation of the ionic composition of blood
  • Production of Red blood cells
  • Synthesis of Vitamin D
  • Excretion of waste products and foreign substances

Being on dialysis also has other effects, none of which are good (or pleasant). Other than keeping you alive, there are zero redeeming factors to dialysis. None. There are plenty of downsides, including
  • No appetite
  • Poor digestive activity
  • Anemia (no energy) due to low red blood cell count
  • Uremia (ill feeling)
  • Frequent metallic (or other nasty) taste in the mouth
  • Trouble concentrating, reduced cognitive ability
  • Poor sleep (try sleeping in a room with a machine running or itching)
  • Tons of supplies crowding the closet, dealing with orders, deliveries
  • Twice a month appointments at the dialysis clinic
  • Crappy diet (no milk, cheese, ice-cream, chocolate, ...)
  • Poor blood numbers, notably high phosphorus, potassium
  • Itchy skin
  • Poor skin health
  • Water retention / limited intake
  • Frequent overnight severe cramps in calves, shins, ankles (yes ankles)
  • Cough
  • Catheter care every day and risk of infection
  • Depression
  • Hopelessness
When I first started dialysis I felt a certain way. Over the months, however, I could feel my health declining steadily. These things crept in over time as my remaining kidney function continued to decline. It had gone so far down I was really having trouble keeping it together, especially while working full time (80% of dialysis patients are unemployed). Luckily, I was working at home almost all the time, but still, I couldn't make it through the days any more without a nap at about 4pm every day due to exhaustion (anemia coupled with lack of sleep).

The day after our surgeries I could already feel the difference. Since, all of the side-effects were going away. I didn't feel like crap any more (look up uremia here), urine was pouring out my catheter (which I had for 3 days, yuck), my dialysis catheter was gone from my abdomen.

Here is the last vestige of dialysis being boxed up and sent back: the dialysis machine. Good riddance and let's hope never to meet again, no offense. What a day that was; all the supplies have been removed, and this stuff is gone. This is a habit which was easy to forget, and it's true cause for celebration to have it gone.


Seeking Normal

A little over 2 weeks out, many of my blood numbers are normal again, and a few are still drifting towards their normal. My energy level and a simple desire to "do things" has returned. Every single one of those downsides listed above has disappeared, or is heading in the right direction.

And no dialysis.

Since coming home September 24 (it's now October 8) I have lost 5.5kg or about 12 pounds. Almost all of this is water weight, water that was "hiding" in my body, despite the dialysis removing excess water every day (usually I would remove 2kg per night which is about 4.5 pounds). All this in addition to drinking and peeing out 2-3 liters (0.5 to 0.8 gallons) of water per day. Drinking this much water while on dialysis would have been impossible; when they told me on day 3 to start guzzling water like this it took some will power to do it. I was in the habit of not drinking much water; my kidney could barely produce 400 milliliters of urine per day at the end. Now that Rob's kidney is working 24x7, it's properly regulating the fluid levels in my body and I'm peeing out over 2 liters every day, which is amazing to me.

So far my blood pressure has returned to normal without any medications. It was high when I came home, possibly due to the added fluid, but now it's perfect, and let's hope it stays that way.

Moving on and Up

This gift is a gift of life and this whole transplant experience at Duke has been a medical marvel coupled with human kindness, love, and bravery. Difficult and frustrating to navigate by its nature, but finally the transplant is done, and recovery is underway. So far, both Rob and I are progressing well in our healing, and things are positive. We pray it keeps heading that way.

Breakfast of Champions
The risk of rejection is highest in these early days, so the transplant team keeps a close eye on it. One of the "more manageable set of problems" I have now is a massive amount of medicine I have to take, most of which I'll be on the rest of my life. But it's a no-brainer to do, it's so easy. Have a look here at my new "breakfast of champions". I take about 1/2 this many at bedtime, too.

Most of these are anti-rejection drugs which suppress my immune system. There also are anti-viral and anti-bacterials to prevent certain infections. Immune suppression is vital because even though Rob was a "perfect" match, your body does not like to find things which aren't yours, and it is very particular about it. These drugs essentially "hide" Rob's kidney from my immune system, keeping it from being attacked (rejected). Over time some of these medicines can be reduced or removed, but for now, this is it.

This is one amazing experience. Back in 2014 when my kidneys were first failing, a transplant seemed impossible, and I couldn't get my head around it, anyway. But, 4-1/2 years on dialysis has a way of changing your perspective on things. And I give special thanks also to the transplant team at Duke for taking on my case, which is very complicated. That team is so top notch and they work tirelessly to change people's lives for the better. They are so good at working with both donor and recipient through the whole process, making sure you get what you need, have the information you need, and the support you need.

Random Thoughts

People often ask us how can they help. A couple of the things I feel strongly about:
  • Donate blood. I received another unit of blood the night after my surgery because my red cell counts dropped for some reason (along with my blood pressure, to about 80/40, yikes!).
  • Become an organ donor. One person's choice to donate their organs can save up to 8 people's lives.
  • Evaluate your diet. I've never been a health-craze kind of person, but having to adjust to a dialysis diet over the past several years has opened our eyes to a lot of things. Eating fresh made food is best, though it takes time, planning, and a bit more effort, but it's worth it. Much of the prepared food we all eat is full of shit you don't want or need. Just take a close look at the sodium or sugar or simple carbs in what you eat. Fast food is poison, full of so much
    sodium it will make your head spin, and your kidneys very sad (e.g, my limit [and your probably should be too] is 2300mg sodium per day). There is an epidemic in this country, mostly due to the poor quality of prepared / fast foods, so many people are overweight because of it, and the new cases of Type-2 diabetes are skyrocketing partially as a result of this (along with high BP and other factors). And 50% of the new dialysis patients are diabetics. Protect those kidneys folks! Take it from me, you do not want to lose them. I always say: kidney failure is like cancer no-one is afraid of. Enough of my soap box.

So Many Thanks

Once again we found ourselves being supported by family, friends, and church. As usual they rallied to us with meals, prayers, cards, and anything else we needed. It makes such a huge difference having a support system like ours, and we are so very grateful. Everyone we know celebrated this breakthrough with us. We've had so much go wrong 5 years ago, but this is a major step in the right, positive direction, and we pray it keeps going that way. I also want to remember that I had several other people try to donate, also, and to them also I am so grateful. We're blessed to have them in our lives, and I can't thank them enough, either.

But, in the end, one person made it through, proved to be a real-life hero. Rob knows how grateful we are, and again there aren't words to thank him enough. He has given me the gift of life, the gift of hope and renewed strength, and a chance to just live normally again.

After what we've been through, can you imagine anything more priceless?


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?