Roads We've Traveled

Notes from the Road: Blood Brothers

Bloodwork to Blood Brothers

On Wednesday, August 1st   2012 I learned I had two blood brothers in the truest medical sense.

It was the usual hot and muggy New England summer day. My father came to get me in Littleton and drove me to Lahey Hospital for the next part of my Chemotherapy treatment: Lumbar punctures — spinal shots to deliver medicine to my brain to keep the Leukemia from spreading there. I reported immediately to the blood lab. There they would draw a sample of my blood to make sure it would clot before they went ahead and stuck a needle in my back.

In my experience, hematology labs, no matter the hospital, are not the most relaxing places in the world. Imagine being given a number and being told to wait in a large room that resembles a cross between a bus terminal and the deli counter at your local Market Basket. People wait in rows of bolted-together plastic chairs. At the end of each row is a small table strewn with the usual detritus of a hospital waiting room (month-old magazines, and newspapers that only the truly bored or extremely anxious would pick up). The room is lit by harsh fluorescent lights, and lined with small rooms with privacy curtains. The floor is usual neutral, institutional tiling.

Because of this, I found it very hard to concentrate on my new James R. Benn mystery novel. So, I sat waiting for my number to be called. When it was, I stepped into the small room, sat down in the chair and presented my left arm.

“This one usually has the best veins,” I said to the phlebotomist.

The Phone Call

As I did this, I vaguely remember the phlebotomist answering the phone, mumbling “OK” and “Yes” a few times and then looking directly a me before saying: “OK, I’ll hold him.”

She hung up and told me that someone had some news for me.

“Good or bad?” I asked.

“I don’t know,” she replied.

Now, by this point I was pretty much conditioned to think: News = Bad. My first shocker was of course on Father’s Day in June when I was told I had leukemia to begin with. Since then, it seemed, the hits just kept on coming. Shortly, thereafter I was told that my genotype, should I be fortunate enough to into remission in the first place, was more prone to relapse. So, I needed a bone-marrow transplant to stay cancer-free in the long term. This meant finding a donor. If a good one could be found, my odds of beating this thing rose dramatically. If not, I could look forward to two years of treatment with only a 20-perecnt chance of survival. Even my hematologist telling me that I was in remission was tainted by the whole uncertainty of the transplant process.

And of course, there was the very worst news of all, when my wife told me that my younger son, Aidan, was on life support after a household accident. It just felt as if it had been a very long time since anyone (especially in a lab coat, scrubs, or carrying a stethoscope) had given me anything worth cheering about.

Engulfed in Fear

I found myself engulfed in horrible thoughts and managed to work myself into a near-frenzy as I waited for the “news.” Soon, a woman seemed to appear in front of me. She didn’t have the look of grave intensity that other doctors had when delivering the bad news. In fact, she was he was smiling. Her body language radiated nothing but positive and happy energy.

I, on the other hand, was visibly shaking from anxiety. My stomach ached. I felt a buzzing in my ears and the beginnings of a headache.

“Well?” I almost snapped, “What’s the news?”

The Slap of Relief

She smiled, placed her hand on my forearm and I considered her face while the background noise in my brain just started to scream: Jesus, enough with the suspense! Just drop the bomb already! Tell me! What new crisis am I going to have to face?

“Your brother Andy is a match!” She announced. Andy was my second-eldest brother. And then in dawned on me: He and my eldest brother Bart had taken DNA tests to determine whether they were bone-marrow matches for me. But I had no idea they’d get the test results back so quickly. It had felt like it was so long ago, but it was only a week or two.

“What?” I asked and began to tremble even harder. It was like relief had just slapped me across the face. I have a match? Within my own family? In the next town over? I won’t have to go through the bone marrow database? I won’t have to do two years of chemo? I won’t have to contact someone in Bulgaria or Bangladesh to see if they would actually be willing to travel to Boston to donate their stem cells?

He was a match! She exclaimed again. And not just any match, she continued, a perfect match! That meant the chances of my body accepting the graft was so much higher. And it didn’t stop there. A few days later I would be told that my eldest brother, Bart, was also a perfect match. In terms of bone marrow, we three were exactly the same.

They were true medical “blood brothers.” The fact that they were also my actual brothers just made it more special.

The Odds of a Match

According to the National Marrow Donor Program’s website, “About 70%, or 7 out of 10, patients who need a transplant do not have a suitable donor in their family.”

The American Cancer Association’s website further states: “The chance that any one sibling would be a perfect match (that is, that you both received the same set of Human Leukocyte Antigens from each of your parents) is 1 out of 4.”

These can be long odds under the best of circumstances, and the minimum number of matches they look for is six pairs. The lower the number of matches, the tougher it is for the host to accept the graft. But Andy was a perfect match: A solid ten-pair matchup.

I had two matches in my family! My God!

Finally, a Choice

I did not have a choice in whether I got Leukemia and I couldn’t do anything about Aidan’s death. But now, now when I needed a potentially life-saving procedure where there is only 30% chance that I will have one match in my family, I get two.

For a variety of reasons, I have a hard time believing in direct divine intervention in our lives. But this? Both brothers being a match? It made me wonder, just for a second, if this all wasn’t more than the mere luck of the genes? Most likely it wasn’t. We humans are so adept at assigning meaning to the meaningless. But in the end, who knows?

God or Genes?

I believe in God and I still have faith. I also believe in science and intellect. I believe that God gave us intelligence, drive and a need to solve problems. I also think that most major religions have far more in common that not.

It’s a strange thought in this world where it seems that religion is used, more and more it seams, to exclude and divide. Some people think that violent religious extremism is an entirely new thing. In my theology classes I learned that pretty much every church has a grisly history. And yet they were all founded on basically the same principles of love and peace, which for me, says a lot more about the nature of humanity than the nature of religion.

We humans, like life, are flawed, often unfair, imperfect, tenuous, and oh, so fragile. So it would make perfect sense to me that our religious belief systems, in practice at least, can reflect this.

Not Losing my Religion

I guess I have more faith then religion than some do. Rather than running away and dismissing religion as fairy tales for the weak-minded, or a mass delusion, as some people have suggested, I still have faith.

I still have faith in Catholicism, flaws and all, but I also learned to have faith in myself.

I try to live my life according to certain principals where I try to be (and sometimes even succeed at being) a good human being. And if there is no God, well, then so what? I lived my life trying not to be a jerk, of course in part because I am worried about my eternal soul, but more because I want to live that way. If God exists, and I do believe he does, maybe I’ll get that communion we all wonder about. Maybe Aidan will greet me at the Pearly Gates and bring me off to an eternal jam session with Jimi, Stevie Ray, Prince, David Bowie, John Lennon, George Harrison, Lemmy and BB King.

Or maybe, if there is an afterlife, it will be more like a metaphysical spiritual unity. Regardless, we can theorize until the proverbial cows come home. We’re not going to know until the end. That’s where faith comes in.

And I have enough on my plate to worry about my eternal soul at the expense of the here and now.

Considering a New Future

But back then, in that summer of 2012 when so much had been taken from me so quickly, I, on that day in that blood lab, got the first indication that I may have a future to be concerned about.

So, in front of the whole blood lab, phlebotomists, hospital reps, patients, nurses and all, I broke down and cried.

“I think,” the nurse said to me, her hand on my forearm, “this is where everything turns around for you.”

I dried my happy tears, let the phlebotomist do her thing, and strode back to my dad who was waiting for me in the Nuclear Medicine waiting area and I slapped a hand on his shoulder.

“Dad!” I nearly shouted, “Andy’s a match!”

My dad stiffened, tilted his head skyward, and exhaled deep as if a prayer had been answered. Maybe it had.

The rest of the day was riddled with time delays and screw-ups. And so what? I had a match: a perfect match. Now, all I had to do was get through maintenance chemo and get my strength back before Brigham and Women’s irradiated and chemo’d the hell out of me.

Bring it on, pal. Bring it.

For further information on the National Marrow Donor Program and the American Cancer Society, please read the links below and see how you can save anther’s life.

National Marrow Donor Program: https://bethematch.org/

American Cancer Society: https://www.cancer.org/