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:
It's still bad?
It sort of feels like someone's sitting on my chest
That sounds unpleasant.
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
Well, it wouldn't hurt to call.
Cara McManusAnd still later that afternoon:
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
I am really hoping this chest pain gets better. It is making me nervous.
I hope so too!
Cara McManusThis 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.
It seriously feels like i'm missing half of my lung
When Cara was in the ER, this exchange occurred:
What have they told you?
I stopped responding to Xalkori
Well, that's not what I wanted to hear :(
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
Cara McManusThe 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.
I don't feel like typing that much
I'll tell you when I see you
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 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.
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.