Existing in Bytes of Life

I’m sitting here getting my umpteenth infusion and thinking about the future. The future with me - the future with me and cancer - the future with me and cancer that is progressing.

Slowly, but surely, my cancer is progressing. Dr. J. assures me that its pace is glacial but also said that this fall (probably) we’ll have to start Plan B.

What that is, is currently unclear … perhaps I’ll be reintroduced to my old friend carboplatin (blech).

She also mentioned at some point referring me to lung cancer genetic specialists in New York, Boston, or Denver.

This news of progression is fairly fresh and so I haven’t really had time to think about it, but at what point does it become not worth it? Don’t get me wrong, I’m ... overzealous? I keep hoping I’ll recognize that point when I get there and be able to make good decisions about it.

For now, Dr. J. suggested that I enjoy the summer and we’ll see what happens.

I’ve said this before – it’s a hard way to live, this ‘wait and see’, scan-to-scan, existing in bytes of life instead of the whole story. It seems it’s not going to change.

I wish I could find some way to make it easier – that I could somehow learn to embrace this new way of living…

Suggestions, as always, are welcome.

Roger Ebert and Me

As most people already know, Roger Ebert recently died of cancer. He’d had it for a long time and although disfigured by it, still maintained his public persona.

I saw Roger Ebert once.

 

Living in Chicago, you see celebrities from time to time. But I didn’t see him on the street, or in a deli, or even at a movie theatre. I saw him at the hospital.

 

It was the week after I had been diagnosed with something – they were still trying to figure exactly what. I was in the basement having just completed my PET scan. They were wheeling me back up to my room and they wheeled me right past an older mand and a women with big-ish hair who were talking with a doctor. The man was wearing a hospital gown and hospital footies. The woman was looking earnestly at the doctor, presumably listening closely to what he had to say.

I thought the man looked familiar and once it dawned on me that it was Roger Ebert, I almost turned around to the orderly pushing my gurney to say, “Hey! Do you know who that was?!” See him there made me feel a little more certain about choosing Northwestern for my treatment. If Roger Ebert who, presumably, has a great deal of money and could go anywhere for treatment chose to come here, then perhaps it’s trustworthy. 

And I used this story. At the beginning of this cancer thing, my mother was trying to convince me to go to a cancer center like Sloan-Kettering and I guess there’s one in Florida near where she lives. I understood that she wanted me to get the best treatment possible, but I didn’t want to move or travel for treatment. Once I told her that I had seen Roger Ebert and that he was getting treatment where I was, she understood and dropped the subject. 

When I tell people my Roger Ebert story, many of them ask me, “Did you give him two thumbs up? Hardy harr harr!” I have to say that, no, I didn’t give him two thumbs up. The man was (half) dressed in a hospital gown and presumably had gone through some sort of scan. I doubt he was in a “two thumbs up” sort of mood." I know after I have a scan, I'm certainly not.

I am sorry that his time had come. He was inspiring to many people – both with and without cancer. I hope both he and his family are at peace.

My Incredible Shrinking Monkey

I have no patience and Neurosurgery be damned!

Since I had yet to be contacted by my neurosurgeon, I asked my regular oncologist at my chemo appointment today, "What's up with my brain?"

Evidently, all is well, or on it's way to being well on that front. The spot is shrinking into non-existence.

Last October, she had taken me off of Avastin due to kidney troubles which, once resolved in February, allowed me to go back on it. She believes that going off the Avastin caused the growth, and going back on it smacked it back down. Which is good for now, but it also holds some uncertainty for the future - which I suppose you live with when you have cancer regardless.

So for now, we'll stick with the monkey theme and say that we've kept my crazy monkey at bay.

Yay.

Thanks to everyone for their kind thoughts and prayers.

Love to all.

Ruth

Monkey Mind

 

 

Cancer is back on my mind, figuratively and perhaps literally.

 

Not that it ever leaves my mind for very long. But at my last neuro appointment two months ago, they told me there was a spot. They said that it could merely be one of those oddities that appears depending on how the MRI ‘slices’ you for imaging. But at my last chemo appointment three weeks ago, I was told there was a small (tiny, little, wee, barely perceptible) growth in two areas. I looked at the scans and, sure enough, the tumors looked puffy – like my fingers after a salt binge. She made some small adjustments to my chemo drug line-up and I didn’t really think much of it.

But I had another brain scan last Friday. Usually if there’s no problem, they call me in a day or two and tell me that I don't have to come in. 

The haven't called me.

So I’m starting my mental slog back into the cancer black hole. Like directly after my diagnosis, I’m living in a cancer-colored world. It’s all cancer and brain metastases.

I’ve gone so far as to start looking a 2^nd line treatments and investigating whole brain radiation (which, by the way, is completely and utterly unappealing).

Oh, and I’m hyper-vigilant about my cell phone thinking at it very loudly, “CALL!! Damn you. CALLLLLLL!! You stupid, overworked neurosurgeon!!!”

It’s getting really weird on a whole new level. I was sitting here eating dates and I caught myself thinking, “Hmmm. I wonder if there’s stuff in dates that can cure brain metastases.”

Possible brain metastasis aside, having cancer is hell on your mental health.

Needy Baby, Greedy Baby or Is Your Cancer Making you Narcissistic?

Cancer has a way of making you focus on yourself like nothing else I’ve ever experienced. Your life, whether you admit it or not, is at the mercy of the whims of your treatment and disease. You think about it. You talk about it. You write about it.  You become hyper-aware of discomfort and pain and think, talk, and write about that. Friends and family offer support and encouragement and as a result, you start to feel a little entitled to a certain level of sympathy and attention.

We become needy babies, greedy babies.

Case in point, I met a woman online. She’s around my age and has the same cancer and diagnosis as me. We have exchanged some emails and they have all, without exception, been about her. She will outline her symptoms, treatment plans, side effects, whathaveyou - without even a simple greeting of, “Hey! How ‘ya doin’?” It’s just straight to her business which, I might add, goes on and on and on and on, which I get - sort of - and then closing with an, “I’ll keep you posted.” Not a, "Hope you're doing well," or, "Best wishes," Nothing. Simple manners are out the window – because of the cancer.

I think we, the cancerous, need to be very careful of the people we are becoming as we deal with our illness. We cannot come to think of ourselves as special people requiring special attention and due special privileges simply because our cells have gone haywire. Although it may seem different when you’re showered with attention and concern by family, friends and medical people, it’s not all about us. Assuming we’re well enough to function in society, we need to continue to engage in the give and take of relationships – perhaps even more so considering what some people do for us.

So here’s my clarion call for dropping those infantile tendencies and maintaining good, adult manners and concern for others despite our cancer.

It's not that difficult. Really.

My Cancer is No Tragedy...

and neither is yours.

However, the mass murder of children, in whatever form, is.

I encourage you to lift them and their families up to whatever form of God you believe in.

Advent, Cancer & Hope

I work at a private Jesuit university and I love it. Every year, the university holds the nine-month-long "Spiritual Exercises in Everyday Life" which was created by St. Ignatius Loyola himself. Participants meet weekly with a group and then alone with a spiritual adviser.  In 2011, I decided to give it a try as a way to assuage the anxieties that come from having late stage cancer. I needed comfort and I was hoping to find it. My experience went well and this year, they asked me to speak at an Advent service for people who are in the program this year, and share my reflections of my experience with The Exercises. What follows is the transcript from that talk. Advent is about hope. In Cancer World there is also a lot of hope, some of it downright desperate. My wish for all of us with cancer is that we are able to, by whatever means we choose, find our own hope. This is how I find it:

Before I started the Exercises, I had been pretty estranged from God, as well as most of my family. I had come to believe that the only thing or person that I could truly count on was me. So when I started the Exercises, it was more of a utilitarian venture than a spiritual one. About a year prior to my Exercise experience, I received a diagnosis of stage IV lung cancer. As for many people, my diagnosis was a shock. I was very young for this type of cancer, only 44 at diagnosis when the average age was 70. Also, I had done everything right, eaten well, exercises regularly, did not smoke, drank only socially - there was absolutely no cancer in my family background - but there I was. I had cancer.
            And so to deal with the shock of it all, I did what I usually did and read. I read books about death. I read books about cancer. I read books about death from cancer. And in those books I learned that when people get a serious diagnosis, they overwhelmingly turn toward spiritual things for comfort. And so that sort of gave me the permission I needed to seek God - for comfort purposes - and so I committed to the Exercises.

My first clue that the process was not going to necessarily provide comfort in the way I assumed came from the Prayer of the First Principle and Foundation, “Lord God, let nothing ever distract me from Your love...neither health nor sickness, wealth nor poverty, honor nor dishonor, long life nor short life.” I remember thinking, “Really?”. Because frankly, it mattered to me very much whether I had a long life or a short one and knowing that I was likely going to have a short one was indeed a distraction from God’s love. Or at least my perception of His love. This started coming up in my meetings with my spiritual advisor, Father Bob.

Excerpt from my Exercises Journal:  10/19/11 - I met w/Father Bob yesterday and part of the discussion was on how I’ve been doing with the exercises. I told him that before I started, I was doing pretty well as far as my dealing, psychologically, with the cancer. Since I’ve started however, I’ve felt a little knocked off my pins. After some thought, he suggested an explanation that I had only touched on. Here I am moving closer to the Entity who gave me the cancer and it’s causing some trouble. As soon as he said it, I knew it was spot on...Today’s readings were basically about opening yourself to God, but how do you open yourself to God when He’s given you a deadly disease which will ultimately cause you suffering and early death? How do you trust that?

            So after some further reflection, for me the Exercises became instruction on learning to trust God enough to not be distracted from His love.

             It was around this time that the readings focused on Romans 9:20-21:

“But who indeed are you, a human being, to talk back to God? Will what is made say to its maker, “Why have you created me so?” Or does not the potter have a right over the clay, to make out of the same lump one vessel for a noble purpose and another for an ignoble one?”

For whatever reason, this passage stuck with me and I thought about it a lot.  I began to think that God had added cancer to my vessel and that was a challenge - but it did not mean that I was less of a vessel, nor were God’s expectations of this vessel lowered. Recently, I had been living alternatively as an ‘angry vessel’ or a ‘pity vessel’ but this would not do. I was not a God-trusting-vessel. God had made me for a purpose and I needed to live up to that purpose.

As we know, the Exercises serve as a way for us to get to know God more thoroughly and intimately. It is through this intimacy that we gain and grow trust and love.  Ignatius teaches us that to find union with God we should use those things that help us lovingly serve, and to let go of those things that don’t. If I wanted to trust and be intimate with God, I was going to need to be the type of vessel that finds ways to lovingly serve, regardless of my cancer. Anger, fear and self pity weren’t helping me to lovingly serve and so, as much as possible, I asked God to help me let them go.

            In their place, I filled my pot with relationships and volunteering. I worked on my relationships with my estranged family members that culminated in a celebratory family reunion this past summer. I started regularly volunteering at several places in my neighborhood. I became involved in some of my parish ministries which led to me make more friends and find more spiritual support and more avenues of service. At work, I worked on the Ignatian Day of Service planning committee and helped organize a new outreach program in my department. Although it has not been simple, and it has not always left me feeling comforted, I feel like I am living on purpose and with purpose, and living well.

            This is all a work in progress, of course. I still have times when the angry, fearful and self-pitying cancer vessel shows up.

            But I am truly glad for my experience with the Exercises. It has  helped me to reconcile - with God, with others and with myself. And it has strengthened me. More valuable than physical healing, I believe that I experienced a spiritual renewal. Cancer happened to me, it happened in me, but it also happened for me, and for those around me, I think. Regardless of my prognosis and the progression of my disease, my hope is that I will continue to be the good vessel, filled with, carrying around and pouring out God’s love and service.