Tuesday, August 23, 2016

Three years

It was three years ago today that everything changed.

This morning, I (as I so often do) looked at Facebook's "On This Day" feature. There were several items of interest for August 23. For one, in 2011 I posted, "Whoa, I've never felt an earthquake before just now!" (And yes, I was right here in Cleveland when that happened - anyone else remember that quake?)

Much more significantly, at 1:13 pm on August 23, 2013 I updated my Facebook profile picture to a photo of Cara and me on a sun-soaked beach in Guanacaste, Costa Rica on the last day of our honeymoon.

Instantly I remembered what had happened three years ago today. I did not remember, though, the exact timeline of events on that day. Was there any particular significance to the time at which I had updated my profile picture, I wondered? And so I dove into my online chat history with Cara in order to answer that question.

One of the quirks of our relationship is that so much of our communication was done online. This was especially true in the period of time when we were "just friends," from March through the beginning of November in 2006. Our communication then was almost exclusively via online messaging - we chatted for hours on end most days, while we only got together in person a total of six times over those months and very rarely talked on the phone. After we became a couple, on November 4, 2006, we spent most weekends visiting each other, but continued to do a huge amount of chatting online. This decreased, of course, when Cara moved to Cleveland in September 2008, but we still messaged each other fairly often as we did not live together until June of 2009. When that happened, the frequency of our online messages dropped dramatically, but it picked back up two years later after Cara lost her job at Medical Mutual (where she had no ability to chat with me during the day) and later that summer found a new job at Case (where no such restriction existed).

The upshot of all this is that I have a very detailed textual history of almost our entire relationship, which is rather unusual, although undoubtedly becoming at least a little less unusual than it would have been in past eras. It's really wonderful to have that history. I suppose the equivalent, for more traditional forms of communication, would be if all your in-person and telephone conversations were audio recorded as they happened and then converted to text. That would seem like a really weird thing as it happened, but years later, wouldn't it be cool to have such a record? In the absence of such a recording system, most all of the face to face conversations I ever had with my beloved wife and best friend have become nothing more than vague memories. But all the online messaging communications are still there in the exact same words as when they first happened. Especially now that Cara is gone, that's an amazing thing to have.

Moving past that digression. The month of August 2013 was a very eventful month. Among the messages I have from Cara are some very brief ones during her great Pedal to the Point adventure (sample: "I miss my bed"). For years, Cara had been participating in the MS charity bike tour to Sandusky. On more than one occasion, she had planned to stay overnight in Sandusky and do the return ride on day two, but then had changed her mind after the first day's ride and had me pick her up in Sandusky. In 2013 she finally did the whole thing, covering 150 miles on her bicycle in two days. This was a huge deal. Throughout that summer, she had been experiencing increasingly worse respiratory symptoms such as wheezing and shortness of breath, which were incorrectly diagnosed as being due to asthma at an urgent care in May. Yet somehow, on that last Pedal to the Point ride, she said that she felt great.

Our chat history at that time includes messages about several different health issues of Cara's. One, her visits to a reproductive endocrinologist about our continued unsuccessful attempts to get pregnant. Cara had PCOS, resulting in very irregular cycles and making it very difficult to get pregnant. This was very frustrating for her. Another issue that popped up that month was the pain and swelling in Cara's leg. On August 7 she messaged me: "Um. There's some really bad swelling on my ankle. I just noticed, on the outside." She went to an urgent care, where they said she had a sprained ankle. She wasn't sure how this would have happened.

The foremost issue, though, was with Cara's breathing. Cara was becoming increasingly convinced that the source of the problems was mold in our apartment. This belief was strengthened when she felt remarkably good on her Pedal to the Point ride and then went back to feeling worse after returning home. It was a time of extreme frustration for Cara and a stressful time for both of us. One message she sent me about this was, "I hate to be a buzzkill but if we go to the ADKs and I don't have asthma issues I'm going to insist that we move." (The ADKs means the Adirondacks, where my family vacations every year in August.)

As it turned out, Cara's issues got even worse during that trip.

On August 15, the two of us hiked Cobble Hill, a relatively short and easy but very nice hike in the village of Lake Placid near the house where we stayed. Cara had to go very slowly on the uphill portion of the hike, but once we were at the top, she was very happy and we had fun posing for some pictures and making each other laugh.

One of the pictures was even described by Cara as her favorite picture of herself that was ever taken:

The following day, we went on a bike ride that we had done in the past. It was about the flattest route available in the area but still had some hills. There were a couple of long, gradual hills and I remember Cara was just going so slowly up them. I felt frustrated (undoubtedly nowhere near as frustrated as she herself felt) and also felt really bad for her. I thought back to the very first times we had gone for bike rides together, all the way back in 2007, and how slow she had been back then. She had improved her fitness so, so much in the ensuing years, and now it seemed like all that progress was being reversed.

With a few miles left in the ride, there was a steep uphill. Cara started up it, experienced a fit of hacking coughs, and stopped. She couldn't do it, she said. I had to ride the last few miles myself to retrieve our car and come pick her up. After that we enjoyed our traditional lunch at the Noonmark Diner in Keene Valley, an eatery known for its pies and one I had been going to with my family since I was a kid. Incidentally, my Facebook profile picture immediately before I changed it to that picture of us on the beach was taken at the diner that day, a funny picture of me wearing Cara's sunglasses:

Cara would describe what she had felt when she tried to ride up that steep hill as like one of her lungs was only partially filling up.

This was, in fact, exactly what was happening.

I recall lying in bed at night in that house in Lake Placid, next to Cara, listening to her just cough and wheeze and cough. It should have been clear then that something was seriously wrong. It wouldn't be much longer before we found out what.

The following week found us back in Cleveland (while my parents and brother remained in Lake Placid, having rented the house for two weeks). August 22 brings some heartbreaking messages in my chat history. That morning, Cara excitedly messaged me, "I got non-stop flights!" In October, she was going to be traveling to Baltimore for a training program related to her job as an exam proctor. She had never done something like this before and was very much looking forward to it. I told her, "It will be really weird to be home alone for a week!" She replied, "It definitely was weird any time you left," referring to times I had been out of town for conferences. I, on the other hand, had never stayed at home without Cara in all the time we had lived together, not even for a single night. (Edit: looking back at this, that statement is obviously untrue, because I was home alone for a night earlier that month when Cara did the two-day bike tour. But to my recollection, that was the only time this had happened.) Little did I know that I would be "home alone for a week" much, much sooner than October - in fact, beginning the very next day.

(Well, I spent much of that week in the hospital, of course, but I did go home every night.)

Also on August 22, she messaged me to ask if I could take her to the store when I got home. She said she was "awfully woozy/dizzy." I said that I could, and she thanked me and said she felt bad for "being so needy."

That was a Thursday. That night I was going to see local band Cloud Nothings perform at the Beachland Ballroom. Cara ended up not going to the store; I made a quick trip there by myself before going to the show, picking up some ramen soup and other things typical for someone with a bad cold. I had a really great time at that Cloud Nothings show, which some of my friends also attended. Looking back, that was the last time that my life was anything resembling normal.

The next morning, Friday, August 23, Cara had a doctor's appointment in Family Medicine at University Hospitals, right by Case campus where we both worked. She unfortunately had not had a primary care physician, and this appointment was to establish a relationship with one. Cara wanted to discuss, among other things, the breathing problems she was continuing to have.

At 10:24 am, she messaged me, "Fever is gone as of now" (she had had a fever the previous night). "That's good!" I replied.

At 11:02, Cara messaged me again. "She's actually kind of concerned about a blood clot. Possibly in my leg. Which could attribute to respiratory issues." As Cara would tell me later, after talking about her ongoing problems with "asthma," the doctor had asked Cara if anything else had been bothering her. Cara mentioned the pain she had been having in her leg. The doctor felt Cara's leg, noticed a warm spot in her calf, and was instantly concerned.

Cara, 11:59 am: "They found a clot. I'm waiting in vascular to see what they do. I might be admitted." 12:28 pm: "I'm in family medicine again... it's such a cluster fuck. I have no idea what's going on."

At 1:02 I messaged Cara to say that I had been away from the computer for a while and her boss had just called me. Cara filled me in on what was going on - she was going to be taken to the ER, where she would be admitted. And so it was that at 1:13 pm, full of concern for my wife, I changed my Facebook profile picture to that honeymoon photo of us, and then left to meet her at the ER, a short walk from the lab at Case where I worked. I spent the next hour or two with Cara in the ER, and listened to a doctor explain what was known at the time. Eventually I went home with plans to return later that day, because there were some things at home that Cara wanted. (Among those items, from a chat message she sent while I was at home, "Boco" - her name for the oldest and most beloved of her Chococat plushes - and "yb" - standing for "yellow blanket," her baby blanket that she continued to sleep with throughout her entire life.) Before I left the hospital, Cara asked me how I was feeling. I said I was feeling pretty at ease, because finally there was some explanation for what was going on with her. A problem had been identified and it could be treated, and then, I figured, Cara could get better. The thought that she might have cancer did not enter my mind.

After leaving the hospital, I called my parents, who were still on vacation. "My parents are on a hike but I got through to my dad. I'm at home now," I told Cara at 3:25.

Some time later, I received a phone call from Cara, who sounded upset and told me that I needed to return to the hospital as soon as I could. I asked what was going on. She gave the phone to the doctor, who said she couldn't explain to me over the phone what was going on, and I should just go to the hospital to hear it in person.

So, no longer feeling at ease, I returned to the hospital.

There I learned why Cara had sounded so upset. Cara had had a CT scan of her lungs. Her lungs were full of pulmonary embolisms (blood clots). Moreover, there was an unidentified mass obstructing one of her bronchial tubes.



At that point, it was still an unidentified mass. But an unidentified mass, that sure sounded like it might be a malignant tumor. Through all those months of Cara's increasing respiratory symptoms, all that wondering of what was going on with her, I don't think the notion that cancer was the cause ever occurred to me. And now there it was. In my mind for the first time. The idea that my wife, a vivacious, healthy, and active 34-year-old woman, might have cancer.

As I said at the beginning of this post: it was three years ago today that everything changed.

The next week is something of a blur. Certain specific events stand out, but the exact timeline is lost to my memory. Unlike August 23 and the days leading up to it, there's little chat history for me to look back on. I called my parents, of course, to update them. I remember telling them, trying to put it optimistically, that the doctors had to "rule out lymphoma or lung cancer" - which, of course, actually meant "Cara might have lymphoma or lung cancer." Or maybe I told them that in person, when they came to see us. As I said, it's something of a blur. (I recall at one point, some time in between Cara's admission to the hospital and her actual diagnosis, being told that lymphoma seemed more likely. I'm not sure why that was.)

My parents and brother were already going to be heading back from the Adirondacks that weekend, and rather than driving straight through to Columbus as they usually did, they made a stop in Cleveland to see us. Additionally, Cara's mother came up from Columbus to be with Cara in the hospital. It had been a long time since we had seen her.

One day the next week a bronchoscopy was performed on Cara. I remember sitting with my mom in the waiting area. The surgeon came out to see us. He said that everything went okay with the procedure, but that it looked like Cara had lung cancer. This was another gut punch, because as I said, for whatever reason I had been under the impression that lymphoma looked more likely. Not that a diagnosis of lymphoma is a good thing, but...

Naturally my immediate instinct was to look up lung cancer survival statistics. What I saw was not pretty. I remember being in a hospital bathroom soon after, washing my hands and looking in the mirror, and just breaking down in tears. How could this possibly be happening?

Once Cara was back to her room, it fell to me to tell her what the surgeon had told me - that it looked like she had lung cancer. Not long after, the doctor in charge of her care learned of this, and was very upset, because he said the surgeon should not have told us that, and Cara had not yet been definitively diagnosed. We did not know whether she actually had lung cancer. We would have to wait for the biopsy results.

I remember clearly the morning that we received those results. I made the same nine-tenths of a mile walk from home to the lab that I made every morning, but only stopped in briefly before making the much shorter walk across the street to the hospital's old Lakeside building. As I walked up the steps to the hospital's entrance, I was stopped in my tracks by a striking sight: a praying mantis was sitting there on the handrail, at the top of the steps, facing the doors through which I was about to walk. It was eerie. I'm generally not a superstitious person, but I imagined the mantis might be some sort of harbinger of death. Although this was a moment that will always stay with me, I did not, back then, look up the symbolic meaning of seeing a praying mantis. Perhaps I was being a little superstitious. Perhaps I was afraid of what I might find. (Looking it up now, I see that it's more often regarded as being a sign of good luck. Go figure.)

I took the elevator up to Cara's floor and walked down the hall to her room, where everyone else was already waiting.

The doctor confirmed that yes, Cara did, indeed, have lung cancer.

At these words, everyone in the room started crying. Cara later said that this was the absolute worst moment. She also said that it was the only time she had ever seen me cry (as in full-blown tears, not just welling up), and that she hoped to never see it again. Remarkably, she got her wish. Although I've cried many times since then, both before and after her death, this has mostly happened when I was alone and never when I was with Cara.

The doctors did not actually use the term "stage IV lung cancer" at that time, but did say that the cancer had spread to her liver and bone, meaning that it was stage IV.

During the previous few months, Cara had often been frustrated and at times even angry about all the issues she was having in her life, foremost being her respiratory issues followed by her infertility. This all changed when she was diagnosed. That anger was gone. Having a baby no longer seemed important when she had a life-threatening illness. And now that the horrible true cause of her respiratory issues was known, her attitude was, okay, it is what it is and we and the doctors are going to come up with and carry out a plan to treat it, and we're going to go on living and enjoying our lives the best we're able. She carried this amazing positive attitude and resilience with her for the rest of her life, and in this way, she carried me with her, and has continued to do so even after her death.

I'll finish with an anecdote about a wonderful thing Cara did for me not long after her diagnosis. Earlier that summer, the band Ohbijou, a band I loved and had never seen live, announced that they were calling it quits and playing a single farewell show in their hometown of Toronto on September 7. Seeing this, I immediately decided that I wanted to go, and I asked Cara if she would go with me. She said that she would, and I bought a pair of tickets.

As August turned to September, Cara was in no condition to make such a trip. I remember after she was released from the hospital, she and I were eating lunch with my parents at our favorite restaurant L'Albatros. I remarked that I wasn't sure whether I would still go to the show in Toronto. My mom got a horrified look on her face, like how could I even consider still going. I'm sure a lot of people would react the same way.

Cara, though... she knew how much seeing that show would mean to me. Of course, if she had said that she didn't want me to go, I absolutely would not have hesitated to stay with her and give up going. But instead, she told me that I should go without her. Her mom was staying at our apartment, so Cara would not be home alone. Still feeling uncertain about it, I did head out early that Saturday afternoon on the five-hour drive from Cleveland to Toronto. I told Cara that after the show, I would start driving back from Toronto and then stop to find a hotel when I got too tired. As it turned out, my eagerness to get back to Cara outweighed any feelings of tiredness, and I drove all through the night, getting back into Cleveland just as the sun was coming up (a very strange thing for me to experience). All told, I drove five hours to Toronto, spent five hours in Toronto, and immediately drove five more hours back home. And it was well worth all that driving; the show was an incredible and supremely emotional experience. There is something very, very special about farewell shows. I wrote a review of the show a few days later, but while I shared it on Twitter so that the band and other concertgoers would have the opportunity to see it, I did not share it on Facebook. This was because I figured that many people would have a hard time understanding how I could have gone to a show in Toronto by myself less than two weeks after my wife was diagnosed with lung cancer. And putting it that way, it does sound strange. But Cara understood. I'm forever grateful to her for letting me have the opportunity to experience that show. Just as I'm forever grateful to her for so, so many other things.

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