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Thursday, November 19, 2015

Happy Birthday to ... immune system?

In November 2014 I underwent an autologous stem cell transplant (SCT) at Duke University Hospital. This was the last, biggest treatment in a harrowing year of crises, surgeries, chemotherapy, and hospital stays. If you don't know what a SCT is, see this. In a nutshell, it means that my bone marrow (or a big part) was destroyed using high-dose chemotherapy, and my own (the autologous part) stem cells are re-introduced (infused). The stem cells make their way back to your bone marrow and start creating new blood cells. Red and white cells both originate here. The idea is that the cancerous cells are destroyed, and the reborn ones are free of cancer (remission).

The day you receive your stems back is called infusion day, or day zero. It was like a second birthday, at least for my immune system. But also for me. It gave me a second lease on life. I am grateful that my oncologists (and other doctors and nurses) navigated me through this, and my response to the treatment was good. It put my Myeloma into stringent complete remission. They also performed a relatively new test on me, minimal residual disease (MRD), which thankfully was also negative. The predictive power of this test is still under study, but any win you get in the fight against cancer is a win. And as far as I'm concerned this is a big win.

I say "had a stem cell transplant" like it was walking into the drug store for some aspirin. In reality it's a long-term, complicated, expensive process; and it's a miracle of modern medicine. It is rigorous and difficult, real chemical warfare inside your body. There are a lot of side effects, although many medicines help alleviate these. Fatigue was a big one for me, and it persisted for quite some time. But, it was worth doing. The doctors and nurses at Duke were outstanding. The level of care in "the bubble" was truly great; I am truly grateful to them beyond words.

My second birthday: November 19, 2014

Using pictures, I like to look back on past events like birthdays, Christmas, etc. This is a look back at some of the events and people related to getting to, and past, my First Second Birthday. I say "some of" because there are missing pictures, like of the wonderful doctors and nurses I've had, or of the friends and neighbors who have supported us along the way.

The pictures span a period of time more like 18 months, beginning in April 2014 and ending today, on my Second Birthday. Pictures are worth a thousand words, and I could write a thousand words about every one, I think. I tried to spare you, and summarized the situation best I could.

April 2014

This was T-minus one week til the fateful "get to the ER now" call. I had been feeling not too well, but my daughter and I took a trip from NC to Baltimore and then Pittsburgh early in the 2014 MLB season. We are both big baseball fans; we took the opportunity to make a "loop" to these two great baseball venues. I have family in Pittsburgh, and we stayed with them and shared a great weekend. In the end, family is all.

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Hospital Stay 1

Things went from normal day-to-day life to kidney failure, and into the hospital in 1 laundry cycle. My NC State baseball friends sent a ball autographed by my favorite player from the 2014 team. With few things to laugh about, I exchanged some texts with a friend of mine about another mutual friend. And breakfast in bed at the hospital? It's not always as glamorous as it sounds. And when you're down, things like Tweets from your daughter help lift yours spirits.

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Cancer Club

One of our first visits to the Adult Bone Marrow Transplant clinic at Duke. Images from the Lily Oncology book that struck me. I got these from a compilation book at my regular oncologist.

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Hospital Stay 2 -- Kidney Surgery

I had a carcinoma in my left kidney, unfortunately too large to salvage any part of my kidney, so the kidney was removed in September 2014. A couple of weeks before my surgery, my surgeon said to my wife and me, "You are really stressed out, take a weekend away." So we did, to our favorite place, Bald Head Island. In the second photo, this is in the final waiting area prior to surgery. This illustrates how many masks we wear: I was terrified. After the surgery, they gave me a button to press when it hurt. I decided to include one semi-graphic pictures of my wounds. I decided that if I had to endure it, you could see a picture of it. My emergency hemodialysis port, surgery scar, and recent catheter for my peritoneal dialysis.

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"All dialysis sucks, some just sucks less than others." Because of the damage done to my kidneys by the Myeloma, and the left kidney being removed, I depend on dialysis. I do peritoneal dialysis (PD) every night. That means protein bars, lots of them, and following your weight (fluid intake). Also note the amount of supplies. Lots of them.

The last photo shows about what it takes every month to keep me alive. Your kidneys are about the size of your fist, and they are amazing organs, so take care of them!

I am on dialysis permanently. As in: for the rest of my life; or until I can receive a kidney transplant. We have begun exploring the possibility of kidney transplant. With Myeloma patients, it's complicated, but doable. Make no mistake, dialysis sucks, and I want to find a way off. Having a working kidney would be a real game (life) changer for me. Not just in day-to-day life and health, but also in treatment options of the MM, should it progress (return).

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Preparing for Stem Cell Transplant

About 6 weeks after my kidney surgery my dad came and we went to shoot a round of sporting clays at a nearby club I belong to. I got a supply of winter hats and do-wraps in preparation for losing my hair. I did take a few pictures with my nurses during the collection of my stem cells. This is an hours-long process, and I had to do it over three days. We finally got enough cells for two transplants. A neighbor friend came by and shaved my head a couple of days before going to the hospital. It's going to fall out anyway, and on advise of others, I shaved it. Good idea. I also got myself an early Christmas present, and XBox One, to take into the hospital with me. I tried a few times to play online with my boys.


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Hospital Stay 3 - Duke

On the 9th floor, near where they park the life flight helicopters, they have a special ward for transplant patients like me. One thing that goes out the window in the hospital, shortly after your sense of dignity, is your sense of fashion. Plaid PJ paints with old-school Drake camo? My neighbor once asked me when I was getting the "real chemo, you know, the one where your hair falls out". Like all the chemo I had up to this point was not real or officially approved. Well, this is the real chemo; it's sort of frightening, so they give you some meds to make you feel better about it. Funny story related to that: about 3 hours later they had a very difficult time waking me up from my nap. I awoke rather abruptly to find a nurse sitting over me on the bed doing a rather enthusiastic "sternal rub". After that, every time I saw her we had a laugh about it. I did eventually lose my hair, and my beard. My wife and I had a makeshift Thanksgiving dinner in my room, and these are a sample of the desserts I saved for my kids.

I got a new immune system, and ... a new T-shirt? Yes I did, hardest one I ever earned. I stayed in the hospital for 17 days, some of the longest of my life. Every day they measure your white blood cell count (among a lot of things), and write your number on the board. You have to find a way to patiently watch it go from zero (yes, 0), back to a level where they'll let you out. This ward was unlike anything I've ever seen, with double door entry, high pressure air (to keep bugs out), high-pressure air in each room (ditto), HEPA air filtration per-room. Visitors are discouraged, but of course your immediate family is welcome, but everyone must wash hands and wear a mask when in my room.

I could spend hours telling you about this stay, and six pictures hardly does it justice, but when I was going through this, I didn't think about chronicling the experience in pictures.

That elf and fireplace? They were created and brought to me by my family to decorate my room, and I keep them as mementos. My kids made that fireplace with help from my wonderful sister-in-law and mom.

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Home at Last

I made it home in time for Christmas 2014. With long time comes healing, hair, visitors, and hair-cuts. All my life my hair has been Spock-straight. It came back curly. After a few hair-cuts, it went back to normal, although the texture seems different, and at times I swear it wants to part itself in reverse to before. Because of the nature of my MM, I am still on a "maintenance" regimin of chemo. My maintenance chemo is overseen by Rex UNC Hospitals.

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This Year in Family

I have found getting back to day to day life a challenge, but here we are. My daughter and I were back at it, at the ACC Baseball Championship this spring. My friends at Rex UNC Oncology are awesome, and I always get a sucker after a good chemo session. My older son plays lacrosse, and this is a photo taken on a weekend trip I took with him. Finally, this my family, and me, one year later.

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My First Second Birthday Party

Today was the day, and it coincided with a dialysis center visit (lab work) and very importantly my 1-year follow-up to the stem cell transplant at Duke. Nothing to report, other than I had 2 blood draw sticks, and 5 sticks for vaccinations. Yes, like baby vaccinations. One of the effects of wiping out your immune system is it sort of forgets some of the things it saw in its past life. This helps get things back to normal.

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Sunday, November 15, 2015

Tholian Web

Imagine you go to a party with your best friend, and he (or she) has been to the Grand Canyon, but you have not. You meet a new person at the party who has been to the Grand Canyon. What happens? Your best friend and this new person instantly hit it off, laughing and joking about Grand Canyon things that, well, you just don't get. What the hell's so grand about the Grand Canyon? You try to stay in the conversation, because you've heard or read things about the Grand Canyon, but it's just not the same.

I can explain what having cancer is like, but until you also have it, we don't really have a common frame of reference. If you've been in a real-life fox hole, it's the same thing for me, I didn't experience that kind of terror. You can appreciate my predicament, or me yours, but real empathy requires shared experience. Keep this in mind when you talk to someone with cancer (or has been in a fox hole). If your father-in-law's third cousin had cancer, it's just not the same. You're not in the Club, be thankful you're not. It doesn't mean we can't talk about it, but please don't say you understand; you don't, not fully. Having an immediate family member or close friend with cancer is close experience.

Can you hear me now?

If you're not familiar with Star Trek, maybe you won't get this reference. If you are a fan, forget about all the other details of the episode. The situation is pretty easy to explain, at least as it relates to this. Kirk is trapped in an inter-dimensional rift, a strange place. He's "out of phase" with the rest of his crew, and can't communicate effectively (or really at all) with them. Try as they might, they can not communicate, nor can they always see him, know what he's up to. I'm sure somewhere on the ship someone is complaining about where their third glass of wine is. All while Kirk is lost in space, with only 3 hours of oxygen left, by the way.

I have felt sometimes that I am caught in my own inter-dimensional rift, unable to effectively communicate with others who are not also caught there.

I sometimes hear the same thing from two different people, but when one says it, it has more instant credence. What's the difference? Shared experience. Having participated in cancer support group, or just talking to other cancer patients, I found an instant connection. It's somehow easier to share "cancer stories" with them, because the frame of reference is there. You don't have to paint the picture of fear, uncertainty, feeling of loss of control, unpleasant medical procedures, staring Death in the face; they already get it. Same thing goes for anyone else who's been through a real harrowing, life-threatening experience. Somehow we can connect more easily. It's good for both of you.

I have found that some others have the gift of bridging the gap. What qualities do they have? Good communication, understanding, past experience with the same situation, and empathy. If not first-hand empathy, similar empathy. We've all had tough (or good) times, and some people are good at relating them, joining to you at the common level.

As a cancer patient, I've found myself in my own Tholian Web. Not just as it relates to communication, but to day-to-day living. Luckily, I have some people in my life like Spock. They refuse to give up or leave me behind. In some fashion they want you back to normal, and while you can't be, you can get out of the inter-dimensional rift and re-join them, even if you're changed, your priorities re-figured. You want to be back there, and they want you there, too, thank God for that, and for them.

Saturday, November 7, 2015


And when I think that God
His Son not sparing
Sent Him to die
I scarce can take it in

How Great Thou Art (Chris Rice version)

I like a broad range of music. Not as broad as some, but broad. When I was young, I didn't care for many kinds of music, just Rock mostly. I grew up in the 80's; Punk and I guess later "progressive rock" (among others) were influential during that era.

Later in life I took to progressive rock, classical music, folk, Nordic, country (which I used to despise) and even top 40. I like to challenge myself with new music. I once joked that if aliens found my iPod, they'd think our species was pretty crazy. Probably they'd be right. Primus and Johnny Cash together on the same device? What the...?!

Music, as an art, is a big part of many of our lives. It can instantly bring back memories and re-establish emotional states from a past time and place. Certain lyrics, melodies or harmonies resonate with us. My music taste changes based on my mood or what's going on my life. All of art is like this, and I think different people react to different art forms, in a positive way, and that's ultimately a reflection of ourselves. We have a relationship, or connection, to the artist, an idea, something.

I have come to understand it's a necessary part of my own life. It's as important as anything else to me, like scientific understanding, or philosophy, or spirituality. Everyone believes something, how well it is consciously defined in their own mind varies. I think a balance of these things is needed for one's own growth and peace.

But I digress....

When I was in the hospital that first time, I wanted to listen to music to pass the time. There's not much else besides daytime TV in the dialysis clinic, and I found it also hard to read. The problem I ran in to:

I felt not at home in my own music collection.

It was disconcerting not being able to listen to my own music. I found that I didn't really have any music to fit my early hospital days of shock, anger, and fear. Or if I did, I didn't really care to hear it. I couldn't find anything I wanted to listen to, and some songs made me so sad I wanted nothing to do with them. Which ones were those? They were typically ones that reminding me of past happy things. Like going to baseball games with my daughter. Who knew going to college baseball fields would keep me up to date with what the kids were listening to? Or going hunting with my son. Or some songs reminded me of past good times with my wife, our honeymoon, our children. Or from my youth; I can name songs from the first middle and high-school dances related to first kisses. And so on.

Eventually, with time, these uneasy and negative feelings passed. Now I have some other memories from that time tied to music. These aren't things I like to remember, but it's part of me, and music doesn't differentiate happy from sad. Music will invoke what it does; and we can't control what we feel at a given moment. We can control what we do, but not the emotions we have. They are a more complicated by-product of our inner selves. Sure, these things can evolve over time, as we ourselves change.

I spent 17 days cooped up in the adult bone marrow transplant ward at Duke University Hospital. The one song I remember from all that time is Run, by George Strait. My wife couldn't stay with me, so a lot of time I was waiting for her to return. Or for my family's return; or anyone's. Listening to this song instantly takes me back to that time, lying in bed, exhausted; lost.

'Cause out there
Ain't where you ought to be 
Baby run, cut a path across the blue skies
Straight in a straight line
You can't get here fast enough

The other significant thing I found during this journey was a collection of art in a book based on the Lilly Oncolgy art contest. I found a lot of things in there I identified with, and still do. These works span every experience, and if you're looking for an expression of how you feel about having cancer, I urge you to look here, also.

One of my favorites from the early days were these. "The Look" (as I named it) was something with which I identified all too well; I remember having that same exact look and posture. I knew exactly what these people were feeling.

In the beginning I identified with the images of despair, uncertainty. There were some depicting pathways into the dark, some with light or bright colors on the other side. I knew I wanted to be on the other side, but it was going to take a long journey through the dark, through some places I didn't want to go.

And it was, but now I've emerged on the other side, at least for the time being. I can identify with the images of victory or hope. My perspective has vastly changed, but I can celebrate whatever victories we get along the way.

It's difficult, if not impossible sometimes, to share emotion with another. We can try to explain things to each other, but these things are so personal. We've all tried to have someone listen to a song to have them understand how we feel, but it doesn't always work. It rather is more personal to them, they have their own experience tied up in it, and it might not match ours.

But, keep looking, listening. We have also been there, and some have the gift of showing us. Read, write, take pictures, draw, paint. At times we are alone in the journey, but not always. Thankfully others have blazed some trails for us. Seek them out when you need help, and help when you can.