Jeff's search for meaning (or, the year that was)

I recently met and became friends with a 29-year-old widow. It's been a really good thing. As another widow friend of mine (someone significantly older than me but still quite young to have become widowed) said, it's great to talk to someone who "gets it."

After we had talked for a while, my new friend told me that my approach to life made her think of a book called Man's Search For Meaning. I decided to read the book, and after doing so found myself quite flattered that she had said that. Man's Search For Meaning was written by psychiatrist Viktor Frankl, a survivor of Holocaust concentration camps. The first half of the book tells of his experiences in the camps, while the second half lays out his formulation of logotherapy, an approach to psychotherapy based on the idea that the most important desire of humans is not to seek pleasure, but to find meaning in life (the form that this meaning takes can vary from person to person). Frankl wrote of how some people in the camps were able to persevere the horrors that surrounded them by finding meaning in their existence. For some, simply enduring suffering could provide meaning.

A brief aside: writings about the Holocaust seem distressingly timely right now.

I realized that, although I had not previously thought of it in such terms, a lot of what I do in how I choose to live my life, and perhaps especially in my writing, is an attempt to make sure that the lives of both Cara and myself have been and will continue to be meaningful.

Another friend posted today on Facebook asking if people had a blog and if so, "What does having a blog do for you?" With the book I had recently read in mind, I replied, "Helps me search for meaning in this very strange, terrible and wonderful thing called life." (Being honest, I added, "Also, gratification from people complimenting my writing.")

I have always had a strong interest in staying in touch with the history of my life. This interest was strengthened by Cara's death, but it was there long before that. My mom has told me, "You save everything," commenting on the fact that I have a drawer full of things I wrote or made when I was in elementary and middle school and that I also have basically every computer file of mine that I've created since the early '90s. As I've written before, it is a really wonderful thing for me that among those computer files are included all the electronic conversations Cara and I had from when we were first getting to know each other (a time at which the vast majority of our conversations were electronic in nature) all the way up to the last weeks of her life.

The world is a scary place right now, and it seems that this has strengthened even more my desire to connect with the past. When I was at my parents' house for Christmas, I went for a walk around Grandview Heights, the suburb of Columbus in which I grew up. This is something I've done many times over the years, but on this particular walk something was different. I had this strong urge to connect with my childhood in a way that I had never felt before. I went to McKinley Field, where I played youth baseball while in elementary school. I sat for a moment on the bench in the dugout, then walked out onto the field. I stood in the batter's box. I stood on the pitcher's mound. I ran around the bases. All the while I was trying to conjure up memories of doing those same things some 25 years ago. Later in the walk, I went by my old schools. From kindergarten through twelfth grade, all of my schooling happened within the same city block (very conveniently located just a half-mile or so from my parents' house). Kindergarten and first grade were in a little building called the "Annex" located across the playground from the building that housed the elementary and middle schools.

When I was in kindergarten and first grade, that playground was not there; instead, there was a street that now dead-ends on either side of the playground. Those changes had been made by the time I got through middle school. I know this because I have a specific memory from a recess on that playground during middle school. There was a kid, a football player, who liked to bully me and would often try to steal my lunch bag. One time he had my lunch bag and I (at least as skinny back then as I am today) charged across the playground and knocked him to the ground. We both got in trouble (an extreme rarity for me!) and had to sit down on a curb next to the playground for the rest of that recess. More changes have occurred since then. The Annex is no longer used to hold classes, and the elementary/middle school building is now entirely a middle school with the elementary school on the other side of town.

Anyway, although I've walked past those buildings countless times over the years, I can't remember ever before feeling the urge to look into the classroom in which I attended kindergarten. But on this walk, something drew me to that little building, and I peered in through the window into the depths of my past.

The truth is, I retain very few specific, episodic memories from when I was in kindergarten. They've mostly faded away with time. But I very much remember being in that room. The sight of it was a very familiar one.

The reality that the little boy who sat in that classroom some 28 years ago would become the person peering through that window some 28 years later, and in fact is the same person but separated and molded by that passage of time, is so surreal for me to ponder.

Why was I so drawn to those spots from my childhood - my old ballfield, my old school buildings - on this particular visit to my hometown? I'm pretty sure it's because the world today feels like a totally different place than it did just two months ago. And not in a good way. So I cling even more tightly to the past, nostalgically yearning for the happy innocence of my youth. Yet knowing I can never have it back.

The election of Donald Trump to the presidency is without a doubt one of the worst things that has ever happened in my life. The fact that he was selected by only a minority of voters softens the blow a little bit, but the fact that someone who is an open and unapologetic racist and misogynist, and a serial sexual predator (and, let's not forget, completely unqualified for the job), could be elected the leader of the most powerful country in the world is absolutely horrifying. And yes, some will say, people voted for Trump for other reasons, in spite of his racism and misogyny, not because of it.

That doesn't make it okay.

If you're willing to overlook how your candidate utterly dehumanizes vast sections of the population, that's not a whole lot better than being openly supportive of that dehumanization.

And let's not be naive. There are a lot of people - I won't try to estimate what percentage, but a lot - who were drawn to Trump in large part because of the racism and sexism.

As 2016 draws to a close, it's become a cliche to remark on how horrible a year it was. Trump's election being a large part of that, but for many other reasons as well. So it's kind of funny for me, while fully recognizing and acknowledging the reasons that 2016 was horrible, to realize that 2016 - on a personal level - was overall one of the best years of my entire life. Why?

Fittingly for New Year's Eve, I'll count down the top ten reasons.

10. I got to spend a lot of great time with friends and family, and made a lot of new friends along the way!

9. I was adopted by this very crazy but very adorable little fellow!

Gavroche joins my two lady kitties Eponine and Mitters, and I'm very glad to have all three in my household. I especially cherish all the time I have with Mitters, who was Cara's cat long before I knew Cara, and who will be 19 years old in less than two months.

8. I took up a new hobby in mountain biking and totally fell in love with it! Riding the trails is something I'm missing a lot during these winter months.

7. I've greatly enjoyed playing pickup basketball at the fitness center at work, and over the course of the year I've gone from being pretty good at rebounding but pretty bad at everything else to being able to hold my own in most aspects of the game (while still being best known as a ferocious rebounder - opposing players who are guarding me and aren't familiar with my game are often warned by their teammates, "You have to box him out.").

6. I had a really wonderful family vacation in the Adirondacks, and best of all, I finally climbed the highest peak there, Mt. Marcy, something I'd hoped to someday do for most of my life. It was probably my favorite hike ever!

5. I also had an amazing time visiting my aunt Jeri and cousins Chelsea and Calyn in California! It was especially great that I got to spend so much time with Chelsea and, despite us having spent very little time together in the past (they are actually blood relatives to Cara, not to me, and plus they live across the country), it instantly felt like Chelsea and I had been great friends our whole lives! And I also got to meet my online friend Deana, a lovely person who first befriended Cara through the online lung cancer social media community.

4. Anyone who knows me knows that going to concerts is a huge part of my life, and 2016 was undoubtedly the best year for concerts of my whole life! Some of the top highlights were Florence + the Machine, Temple of the Dog, Daughter, Explosions in the Sky, Okkervil River, Nada Surf, Lucius, Bruce Springsteen, and Madi Diaz, and there were so many other great shows too!

3. The Cleveland Cavaliers won the NBA championship after coming back from a 3-1 deficit to the greatest regular season team of all time in the Finals, ending Cleveland's 52-year title drought in one of the most dramatic events in sports history, and I was in downtown Cleveland with my good friend Fiona when it happened! One of the best days of my life!

2. Shelli Snyder is still with us and is making great strides in her long road to recovery.

Enough said.

Well, I guess I should add that the events surrounding Shelli's crash are another example of how good things can follow from a tragedy. Just as I learned so much about life from watching my wife live with and then die from cancer, I made and strengthened many friendships and was drawn much more into the wonderful Cleveland cycling community by that horrible incident some three months ago in Montana.

And the top reason why 2016 was a good year for me...

1. The first three months of the year were pretty bad for me. Quite bad, in fact. For the reasons why, feel free to refer to this post from last December. But then things began to improve. Improve a lot. Don't get me wrong, I'm not pain-free and probably never will be, but for the majority of the year I've been at a point where chronic pain is not preventing me from enjoying life. There have been plenty of other times in all my years with chronic pain that that has also been true, but this is the first time ever that my seeking out of health care actually directly led to an improvement in my condition, rather than it failing to help and then things eventually changing for reasons that often seemed largely random. As a consequence, I feel more in control of my life than I have at any point in more than a decade!

There are a lot of good reasons for the world at large to look at 2016 as a bad year, but the sad reality is that there's a good chance things are going to get a lot worse, and in the future we'll look back on 2016 nostalgically. Whether or not this is true, it's important for us to always cherish the good things we do have, and the friends and family who play such a large part in making life worth living.

One way to find meaning in life is to work to make the world a better place. That's something you can find meaning in whether or not that work is successful. Unfortunately, there are times when we have to work really hard simply to try to prevent things from getting worse. Now is one such time. There are a lot of scary things on the horizon. One ties directly to my number one reason that 2016 was good. I was able to receive health care that resulted in my life going from basically terrible to pretty darn good. Being able to receive needed health care is so, so important and is something that should be denied to no one in any prosperous society. We have made a lot of progress in expanding access to health care, and although there are still enormous flaws in our health care system, more people have access to health care now than ever before.

Efforts are underway to reverse that. Because Republicans in Congress value giving bigger tax breaks to Donald Trump literally over people's lives. We all have to do everything we can to stop that from happening.

Happy New Year, everyone.

Thankful

As it is for me, writing was an important part of Cara's life. She kept a number of different blogs over the years. The last of these was Mets SUCK! (The story of a girl with metastatic lung cancer.) Prior to that was A Girl About Cleveland, a blog that Cara started shortly after she moved to Cleveland in 2008 (having decided that if our relationship was going to continue to progress, it could no longer be a long-distance one) and that mostly focused on food but also contained various tidbits about Cara's life in her new city.

On November 24, 2013, Cara posted on her Girl About Cleveland blog for the first time in over half a year, a post that would be the final one on that blog, titled simply Thankful. She wrote:

This summer started out wonderfully. I logged over 1000 miles on my bicycle and had great fun with friends and family. At the end of August however, I was diagnosed with ALK+ adenocarcinoma of the lung. Needless to say, that has kept me busy. I spent a week in the hospital after diagnosis and ended up going back about two weeks later for a related medical complication (for another week). 

Treatment is going well though, and my prognosis actually looks good. As we approach Thanksgiving, I truly have a lot to be thankful for. I may not be at 100% healthwise, but I'm here and all things considered...I feel pretty good. I am surrounded by friends and family who care tremendously for me, and I'm in the capable hands of the staff at one of Cleveland's best cancer hospitals. 

I have so many stories to tell all of you - even though chemotherapy has changed my palate and appetite some, I've been able to eat and drink some amazing things. I'm hoping to get a blog or two under my belt during the holidays (no Black Friday shopping for me!) so I can tell you all about them. 

I wanted to share a recipe that Cleveland's own Chris Hodgson posted on Dim and Den Sum's Facebook page back in November 2011. This cranberry sauce is the perfect combination of tart, sweet and spiced. It's a hit with my family. Make enough to share (and enough to put on your turkey sandwiches in the days following Thanksgiving)!

(She finished the post with the cranberry sauce recipe.)

Before continuing this story, I want to pause for a moment to point out that Cara was completely incorrect when she wrote, "my prognosis actually looks good." And I knew that she was incorrect. However, no one told her this, and it's an interesting ethical question.

You see, when we got the results of the genetic testing showing that Cara's lung adenocarcinoma was ALK-positive, Cara's doctor explained that this was good news, because it opened up more treatment options. There was a drug called crizotinib (brand name Xalkori) that had been developed in recent years to specifically target ALK-positive tumors, and for patients who had such tumors the response rate with crizotinib was much better than with traditional chemotherapy. When Cara wrote that post, she had been taking crizotinib for a little over two months, and was responding well based on how she was feeling and on her most recent scans. Therefore, she felt that her prognosis looked good.

Being a scientist, I had naturally looked up research articles about crizotinib, and had seen that, in the clinical trial, the median progression-free survival was about 8 months longer with crizotinib than with traditional chemotherapy. This meant that the typical outcome for someone taking crizotinib was that they would gain about 8 months in which their disease would be under control, but ultimately they would still die of lung cancer.

There is no cure for stage IV lung cancer. The hope was that the progression of research generating new treatments would outpace the progression of Cara's disease, so that her disease would continue to be controlled and perhaps, some day in the future, a novel treatment would come about that could completely eradicate it. Or that could turn it into a chronic condition that would not actually progress to lethality. This hope was not a totally unrealistic one. There are people who have been able, thanks to the development of new treatments, to live much, much longer with the disease than Cara did, some who are still alive and well more than a decade after diagnosis. Still, the most likely outcome was always that Cara would succumb to her disease.

Cara's doctor did not explain this. In fact, Cara's doctors never told Cara that she should expect to die of cancer until the last week of her life. Should she have been told? I don't really know the answer to that question. I lean toward thinking that in Cara's case, it was better not to directly tell her. I think it was good for her, and for me, that she had that optimism, and could try to live life as normally as possible. Of course, even if she had been told, "You're probably going to die of this," that's not the same as, "You're definitely going to die of this," and Cara would likely have been just as determined to beat those odds. Don't get me wrong, she was well aware that she had a life-threatening condition, just not fully aware of how the odds were stacked against her. I knew all along that Cara would probably die of cancer, but I still hoped that she wouldn't. I never told Cara that she would probably die of cancer. The first time I ever heard her express the sentiment herself wasn't until 2015 when she told her mother, as the three of us sat in a doctor's office, "You know, this is probably going to kill me some day," and as it turned out, "some day" would arrive just a few weeks later.

Returning to November 2013. The very next day after Cara posted her "Thankful" post, she messaged me from work to say, "Ugh. This cold weather sucks. My chest just aches!" She later told me one of her online friends was urging her to call the doctor, leading to this exchange:

Jeff McManus
It's still bad? 

Cara McManus
It sort of feels like someone's sitting on my chest 

Jeff McManus
That sounds unpleasant. 

Cara McManus
It kind of is.
I'm breathing okay but there's a definite weight on my chest
Feng isn't at Seidman today
So I don't know what I'd do.
I'm kind of worried but I don't want to be a complainer
I'm raspy and stuff 

Jeff McManus
Well, it wouldn't hurt to call. 

Cara McManus
Kinda busy right now
I mean, I don't have the time to have a conversation with a doctor right now
Am kinda concerned though

And still later that afternoon:

Cara McManus
I am really hoping this chest pain gets better. It is making me nervous. 

Jeff McManus
I hope so too! 

Cara McManus
It seriously feels like i'm missing half of my lung

This was something that happened several times during Cara's illness - Cara being reluctant to go to the doctor about serious symptoms she was experiencing because she didn't "want to be a complainer." I don't say this to be critical of my late wife, but it's an interesting insight into the mindset she had. The next morning when she was feeling no better I convinced her to call the doctor, which led to her being admitted to the hospital, and it turned out to be a very good thing that she didn't wait much longer because if she had there's a chance she could have died way back then.

When Cara was in the ER, this exchange occurred:

Jeff McManus
What have they told you? 

Cara McManus
I stopped responding to Xalkori 

Jeff McManus
Well, that's not what I wanted to hear :( 

Cara McManus
You and me both
Haven't talked to Feng since she first came in though
I assume i'll do the other drug
I hate that doctor in the ER 

Jeff McManus
Why's that? 

Cara McManus
I don't feel like typing that much
I'll tell you when I see you

The reason that Cara told me she hated that doctor in the ER was that an ER doctor, someone who had no relationship with Cara and had never seen her before, had offered Cara the completely unsolicited opinion that there was no shame in considering hospice care. Needless to say, this was extremely upsetting to Cara, especially since when it happened she was alone in the ER, with no family or friends present. Cara's doctor (Dr. Feng) was also extremely upset at hearing of this incident. That conversation, if it were to come up, would be one for Cara's personal doctor to have with Cara. An ER doctor who did not know Cara had no place bringing it up. And that doctor had no idea about the different treatment options that Cara might have available. It would have been a terrible mistake to go to hospice care at that point in time, and I shudder to think how someone in a similar position but without Cara's strength of will or her strong support system might have taken that advice.

Cara was certainly in a grave state health-wise. We learned that that feeling of a weight on her chest was due to the fact that her pericardium, the sac that contains the heart, had filled up with 800 milliliters of fluid. That's a lot. (In September, after she had been diagnosed but before she started taking crizotinib, a similar incident had occurred when Cara's breathing worsened fairly rapidly over a couple days and after admission to the hospital we learned she had a whopping three liters of fluid in her chest cavity - but the pericardium is a much smaller space, so this time the situation may have been even more urgent.) She would have to have surgery to drain the fluid and to create a pericardial window - a hole in the pericardium so that additional fluid would not be stuck there. The surgery was scheduled for December 2. I don't remember all the details of that week or why it was exactly that the surgery was a week after Cara was admitted, but I'm sure there were good reasons. So while waiting for that surgery to take place, we spent Thanksgiving not in Columbus as we normally did, but in the ICU at University Hospitals in Cleveland.

Cara's parents came up from Columbus to spend Thanksgiving with us. At my and Cara's apartment, the three of us (her father Trent doing the majority of the cooking) prepared a Thanksgiving dinner to take to the hospital. I personally made the same applesauce that I have made for family Thanksgivings for many years, as well as the cranberry sauce that Cara had posted the recipe for on her blog and had made in the past. Making that cranberry sauce has become my thing as well - I've done it every year since, including 2014, when Cara was well enough that she made rolls and a dessert for our family gathering. It's a really delicious recipe.

Having Thanksgiving in the ICU was definitely not what we wanted, Cara most of all. But it was good that we still had a Thanksgiving, and good that Cara's parents could join us. The day after Thanksgiving was the last Friday of the month, meaning it was the day of the monthly Critical Mass bike ride, and Critical Mass rode to the hospital in honor of Cara.

The location of her room did not allow us to see them, but Cara was so moved that her friends did this for her. "Happy tears tonight. Cleveland Critical Mass FOREVER. All of you give me so much hope," she posted on Facebook.

The following day Cara was able to be moved out of the ICU and to a room in Seidman Cancer Center, which was very good because she hated being in the ICU.

There are several conversations over the course of the almost two weeks Cara ended up staying in the hospital that stick with me. I don't remember the exact order in which they occurred. I do know the first was with Dr. Feng. I was very worried about the fact that Cara's condition had worsened so dramatically in such a short period of time. She told me that sometimes when cancer became resistant to a treatment like crizotinib, there was a sort of rebound effect resulting in rapid progression. I asked her what the next step would be. She told me that she hoped to enroll Cara in a clinical trial for a newer ALK inhibitor drug, alectinib.

I was very stressed out and feeling very distraught throughout that first week. I remember going to the pharmacy at Target to pick up a prescription. I remember hoping that a young pharmacy tech named Ally who Cara and I had met recently would be there. The way we met Ally was quite remarkable. While picking up a prescription for blood-thinner medication, Ally asked Cara, if she didn't mind telling, why she had to take that drug. Cara explained why, and we were startled to learn that Ally's fiancé (now husband, and yes, he is still alive and well) Matt had been diagnosed two years prior with the exact same stage IV ALK-positive lung cancer! It was such a remarkable coincidence. We shared our experiences with each other, and learned that Matt had been on death's door at diagnosis but had made a remarkable recovery after taking the same drug crizotinib that Cara was on. That drug had saved his life. That story was one of the main things that gave me hope.

I told Ally about what was going on and she could tell I was very upset. I told her how Dr. Feng had brought up the alectinib trial, but the fact that Cara had failed crizotinib so quickly made me worry that the same would happen. Ally told me that she and Matt knew of some people for whom alectinib had worked more effectively and for a longer time than had crizotinib. "Cara is going to get better. That clinical trial is going to work," she told me. "It has to, it just has to."

This made me feel slightly better. Slightly.

On the day of Cara's surgery, Cara's mother Joyce, Cara's aunt Jean, my mom, and I were all gathered in the waiting area. After the surgery, the surgeon came out to us and told us that the surgery had been successful, but based on what he had seen when he was in there (and he did point out to us that he was not an expert), things did not look good.

I'm pretty sure my immediate response was a sardonic smile, like, oh, of course.

During the course of Cara's illness, there were three main low points for me. The first was the time of her diagnosis. The third was the end of her life. This was the second.

After the surgeon was gone, Joyce said something about she wished he had given some sort of time table. Of course, he wasn't really the one who would be able to do so. But we were all given the clear impression that Cara probably didn't have much time left. Perhaps a few months, I remember thinking.

Late that afternoon, I posted a terse status update on Cara's Facebook account:

This is Jeff. Cara got out of surgery about 1:00. The procedure to put in a pericardial window was successful. She is in the recovery room now, still waiting until she is ready to be moved to a hospital room.

I remember sitting across from my mom in the cafe at the hotel across the street from the cancer center, and telling her that, although I had known that there was a good chance that Cara would not survive her illness, I had not expected things to go downhill so soon and so rapidly.

I also remember sitting next to Cara after she was back to a hospital room. I smiled at her. She told me that I looked much more at ease than I had before the surgery. The truth of it was that before the surgery I was so worried about what might happen, but now I was already coming to terms with the notion of her dying.

My mom and I agreed that Cara should be informed of what the surgeon had told us. It was hard to tell Cara, though. Eventually I decided that the best way to inform her of the bad news would be to ask the surgeon to come see Cara and tell her basically just what he had told us, in the same clinical way. Then she could react however she felt like reacting, rather than having my own grief over the words influence her reaction.

So he did come to her room and tell her. To my surprise, Cara seemed unfazed by the news. Like what he was telling her wasn't that big a deal. Perhaps the drugs she was on helped. Her attitude was basically, it is what it is, and now we're going to move on to the next thing.

There was some concern over whether Cara was healthy enough to be accepted into the clinical trial. On December 6, she signed the consent form.

On  December 12, she was officially accepted, and she started the trial the very next day.

When we spent that Thanksgiving in the ICU, I fully expected that it was Cara's last Thanksgiving. Even at Christmas the following month, I thought it was probably Cara's last Christmas. But over the next few months, Cara made the most amazing improvement. By spring she was even able to get back on her bicycle and do some long rides. And not only did alectinib work better against Cara's cancer than any of the other treatments she took during her twenty-month battle, it also had the least side effects. For a little while, in April and May, it was like Cara was almost back to her normal self!

It couldn't last forever, though. In late May we found out that there were some small metastases in Cara's brain and she had to stop the trial. She went through several other treatments over the next almost-year; they all helped temporarily but none worked as well as alectinib. (Alectinib, by the way, has been FDA approved and is now helping lots of lung cancer patients, and they all owe a debt of gratitude to Cara and everyone else who participated in that clinical trial.) Still, through all of that time Cara and I were able to enjoy so many great experiences together. It wasn't until the very last week of her life, in April 2015, that her health and ability to function returned to the low point they had been at in the week of Thanksgiving 2013. None of that would ever have happened without the heroic efforts of numerous doctors and research scientists who made Cara's treatments a reality. So, just like Cara was when she wrote that last post on her Girl About Cleveland blog, I am truly thankful.