Sadly, Cara passed away at 4:15 am on Friday, April 24 in a room on the Palliative Medicine floor of the Cleveland Clinic. Her mother and I were with her when she passed. I know how many people loved Cara and were following her struggle through this blog, so I want to attempt to provide some closure.
At Cara's previous doctor's appointment, when we received the news that there had been further progression of her cancer and she would be stopping Zykadia and entering an immunotherapy clinical trial, I remember she said to her mother something like, "You know this is probably going to kill me some day, right?" This startled me. Although I knew she was right, I had never heard Cara say this before. Nor had I ever said anything like it to her.
She did not say it meaning that she expected to die soon. Not by any stretch of the imagination. But maybe a part of her sensed something.
After that appointment, Cara went back on supplemental oxygen for the first time in over a year. Considering how close to death she came around Thanksgiving of 2013, it's really remarkable that she was able to do so well for so long. It's a real credit to the doctors and scientists working in the fight against this horrible disease. Cara was prescribed 2 liters/minute of oxygen. We were set up with a condenser to use at home and tall oxygen tanks that could be wheeled around for use outside of the home. Cara began a draft of a post here that she never finished writing, although she did post her Photoshopped image and caption to her Facebook. The unfinished draft went as follows:
On Sunday, April 12, Cara and I went to an organizational meeting for the Breathe Deep Cleveland charity walk/run that she had taken the initiative in founding. It was a great meeting; we all shared a lot of ideas and made plans for a wonderful event. Cara talked about how she and one of the other women could go around to businesses to solicit donations for the event, and Cara said it might help get donations if she had her oxygen with her. She might as well take advantage of it while she could, was the thought, since we were very hopeful that the upcoming clinical trial would once more take away the need for supplemental oxygen.As long as I have to wheel around 5-liter oxygen tanks, I ought to be able to put them on a "corn popper".I feel like that's what I have when I'm pushing it around, the only things that are missing are the brightly colored plastic wheels, balls, and the sound.
Cara wanted to have the small, portable tanks that could be worn over the shoulder so it would be easier for her to do things outside the house. She needed to be evaluated by Home Health Care before getting this, because the small portable tanks use a pulsed rather than continuous flow and it has to be verified that the patient's oxygen levels can still be maintained adequately, so I called to set up an appointment. She did not want to take time off from work (I know, isn't it crazy that she was still working 30 hours/week??), and Fridays were the only days she wasn't working, so I ended up having to schedule the appointment for the Friday of the next week - that is, Friday, April 24 - at 9:30 am.
In the days after that Breathe Deep organizational meeting, Cara began to have a little more difficulty breathing. She dialed up the oxygen flow she was receiving, especially when she was going up the stairs to our residence on the second floor of a house. On Thursday the 16th, I picked her up from work as usual. When we got home, she really, really struggled going up the stairs.
Friday was her day off, and she stayed home all day. By Saturday, it was exhausting for her to just walk between rooms of our house. We decided that we really needed to go to the hospital. When it was time to go, she said that she couldn't do it; it was too hard. I told her that that was all the more reason we did need to go. Finally, we went. It was a horrible struggle for her just to go down the stairs.
We went to the ER at about 6:30 pm and ended up spending the whole evening there. Cara was given a CT scan and had blood work done. After she messaged her oncologist, he called me and told me he had looked at the CT scan at home and didn't see a dramatic difference from the one of a week and a half prior. He also noticed that her white blood cell counts were very elevated. He said it would be unusual for cancer to change so much in such a short time to explain why she was suddenly having so much trouble breathing, so he suspected she might have an infection such as pneumonia.
Cara was taken to the ICU, and began receiving antibiotics in the hopes that it was an infection. The next day, Sunday, her mother came up from Columbus to join us.
The days that followed are something of a blur. Remarkably in retrospect, for the first couple of days after going into the ICU, Cara began to feel better. She was having less trouble breathing, and the oxygen flow she was receiving was dropped from 12 to 10, to 8, to 6. The antibiotics, it seemed, were working. Who knows the actual reason for this apparent improvement - maybe there really was an infection, but it was only on top of the also significant cancer growth - or maybe receiving adequate oxygen after having not done so for several days was the sole cause. But by midweek, Cara started to feel worse again. Doctors said it no longer looked like an infection. Things now began to look grim, because that clinical trial that had sounded so promising would certainly not enroll someone so sick as Cara (and plus, as her doctor explained, immunotherapy takes a lot longer to cause significant improvement than ALK inhibitors do, so it wouldn't have been a good option anyway), and there wasn't really anything else left that would turn things around, because every treatment normally given for her cancer had already failed.
We all became aware that Cara was dying, for real this time. We didn't know when, but we knew that her days on this Earth were numbered. She wanted to be able to see her home and our cats again before she went. There was talk of getting her home. First, she was moved out of the ICU (she hated it there) and to the Palliative Medicine floor. We thought that, because the worsening of her condition had accelerated after she stopped Zykadia, it might help her some to go back to taking the oral chemo. Maybe this would cause a temporary improvement in her breathing and let her get to a stable enough condition where she could safely go home and then live her last days or weeks in a comfortable environment. (Maybe, I hoped against hope, it would cause enough improvement that we could then try something else and extend her life even more. I knew this was unlikely, but I still didn't want to give up.)
It's all so surreal looking back on it. On Thursday, I went to see Cara in the morning, then went to a meeting at work (I work in a research lab at the Clinic, just a few minutes' walk from Cara's room). There I told one of my coworkers about what was going on, and she was very shocked and saddened. She is a Korean woman who was pretty new to Cleveland, and once, a few months ago, Cara and I had taken her to the West Side Market and then lunch at a Korean restaurant. She said that Cara had seemed to strong when she met her. After the meeting, I spent much of the rest of the day at Cara's room, but also did a little more work in the afternoon. That afternoon, Cara restarted Zykadia. She noticed that she only had a few days of pills left, so late in the afternoon I called in a refill of the prescription. At about 7 pm, her mother and I left her to pick up a few things from our house and to pick up pizza for dinner (she wanted to have Papa John's). At that point in time, she seemed to be doing okay enough that we felt comfortable leaving her alone for an hour.
Cara did get to enjoy her pizza. I sat in a chair next to her bed and watched the second half of the Cavs game as they took a 3-0 series lead over Boston. But later that evening, things took a dramatic turn for the worse. A nasal cannula was no longer keeping Cara's oxygen levels high enough, even at 12 liters/minute, and she had to be given a face mask, which she did not like. Her breathing and heart rate threatened to spiral out of control, so she was given more potent narcotics in her IV. This calmed her down, but as nurses periodically checked her oxygen levels, I noticed the levels were becoming inexorably lower even with the face mask. She had already decided that she did not want to be intubated, knowing that this would leave her unable to speak and that, with the way things were going, the intubation would be permanent.
My parents were planning to come up from Columbus on Saturday. At about 1 am, I called and told them she was getting worse and they had better come up that morning instead. She was in a calm enough state that I still guessed she'd make it through the night, although I was by no means certain.
It was not to be. At 4:15 she was gone.
At the same time that the nurse informed us of the obvious (for Cara's heavy, labored breaths had suddenly become very slow and irregular and then ceased completely), my phone's text message notification chime sounded twice. Startled, I looked at the phone. "What was that?" her mother asked. I had received two text messages from my mother. Both messages were blank. Was Cara's spirit trying to communicate with us at the moment she left the world? My mother later showed me that she had indeed sent the messages at 4:15, to tell me that she and my father were leaving Columbus. I don't know what sort of glitch caused the messages to appear blank on my phone (and this wasn't the first time it had happened with a message from my mother), but in any case, it was quite an uncanny coincidence that she sent the messages at that very moment. In a way, it was poetic.
That morning after we had returned home, my mother said she thought she heard a knock at the front door. This was odd, but I went down to check. A man from the Cleveland Clinic said he was here for Ms. Cara McManus.
I suddenly remembered the appointment to evaluate her for personal oxygen tanks. All I could do was to say, "She passed away this morning." He was shocked and offered his deepest condolences.
I miss Cara tremendously, and I am still processing the shock of what happened. Less than three weeks ago, we were optimistically looking forward to a new clinical trial that might extend her life for months or even years. Six days ago, we were in the ICU but thought she had an infection that was improving and that she could get to the trial after it went away. Three and a half days ago, we knew things were very grim, but still had no clue how soon it would be over. I remember Cara, as she talked about how she wanted to live out her last days in her home in the company of her cats and family members, saying repeatedly that no one had told her anything indicating she had to get her affairs in order at that very moment. Because of this, she felt irritated at how the doctors seemed to be pressuring her into making decisions and answering questions.
This is undoubtedly a depressing post to read. It has not been fun to write, but it was important for me to do it. Let me try to close on a positive note. Cara was such an amazing person who touched so many people's lives, and the outpouring of love and support we've received since she passed have made me all the more aware of how incredible she truly was. Although I had no idea how quickly the end would come, I can also say that, in December 2013, I would have been stunned to learn that she would live as long as she did. I'm so grateful for all the extra time we got to make so many happy memories together. Without the enormous advances in treatment methods that have occurred in recent years, this never would have been possible. We need to increase our efforts to support this research, so that more cases of lung cancer can be detected early and so that some day even those people who do get the grim diagnosis of stage IV lung cancer can reasonably expect to go back to normal healthy life.
Cara was such an inspiration in the way she persevered and lived her life and I will take that inspiration with me for the rest of my life and I know that many others will too. I will close by sharing her obituary, which includes the details of her funeral arrangements. Rest in peace, my sweetheart.
CARA JOY McMANUS (nee Williams), age 36, avid cyclist who courageously battled lung cancer, died April 24, 2015 at the Cleveland Clinic surrounded by her loving family; beloved wife of Jeffrey; loving daughter of Joyce Williams and Trent Wyckoff; devoted granddaughter of Margie and the late Fred Lon Williams, Jr.; cherished niece of Jean Williams, Janet Hassfeld, Jeri Kinney and the late Joan Williams and William Bryant; treasured daughter-in-law of John and Pamela (nee Harrison) McManus; dearest sister-in-law of Jennifer and Christopher McManus; fond niece to many aunts and uncles on Jeffrey’s side of the family; dear cousin and friend of many. Cara is also survived by her feline companions Mitters and Eponine.
Cara was born and raised in Columbus, Ohio. From childhood, she was a creative and artistic person with a keen sense of curiosity about the world around her. At Dublin Scioto High School, Cara was a proud member of the marching band in which she played the clarinet, an instrument she continued to enjoy playing into adulthood. In 2006, Cara and Jeff’s lives changed forever when the two, having originally become friends after meeting via an online game, fell in love and began a long distance relationship. After meeting Jeff, Cara began to ride a bicycle, and this sparked a life-long passion in her. Cara moved to Cleveland to be closer to Jeff in 2008; the two became engaged in 2010 and married in June 2011. In Cleveland, she became very active in the cycling community. Just weeks before being diagnosed with stage IV lung cancer in August of 2013, Cara completed a two-day, 150-mile MS charity bike tour. Throughout her battle with cancer, Cara’s strength, determination and courage shone through all the more brightly. She continued to show her numerous talents in hobbies such as cooking and drawing, continued to work diligently as a test proctor at Case Western Reserve University, and continued to light up the lives of all those around her with her wit and spirit. She also was instrumental in founding the Breathe Deep Cleveland lung cancer charity walk/run, an event she continued to work on into the last weeks of her life. Cara will be remembered most as a determined, passionate, courageous and effervescent woman who brought great joy to everyone who was lucky enough to know her.
In lieu of flowers contributions may be made in Cara’s memory to Breathe Deep Cleveland, lungevity.org/Cleveland.
Celebration of Life Service Wednesday, April 29, 2015 at 10 AM at THE DeJOHN-FLYNN-MYLOTT FUNERAL HOME OF SOUTH EUCLID, 4600 MAYFIELD RD. (just east of Green Rd.). Graveside Service will take place at Union Cemetery in Columbus, OH at 2:45 PM on WEDNESDAY. Family will receive friends to pay tribute to and celebrate the life of Cara at the FUNERAL HOME TUESDAY 3-5 and 6-8 PM.