Reflection

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A few days ago I was at a little store here on The Big Island and the sales lady told me she was an 18-year cancer survivor and that she had fought it for nine years before she got through it. I don’t know what kind of cancer she had or what stage it was. “Don’t give up,” she told me. Her advice has stayed with me. When I get that swelling around the brain and start throwing up every few seconds and can’t stand upright and end up in the hospital, sometimes I wonder, Is it worth it to continue? But talking with another survivor certainly helps and offers hope.

dscn01602This little cove on The Big Island is such a healing, gentle place. I am at the beach now, the sun is out, and the colors of the water are stunning — a soft sea-glass green, aquas, turquoise, then a deep calm blue and lavender farther out. The sand seems to glow with the warmth of the light. The vegetation is vivid green, and the flowers are brilliant. I plan to sketch palm trees today in their tall grace. Birds are singing; I think they are mostly house wrens, although there are three brightly-colored parrots near the cafe with their wings clipped, I believe. They seem to resent their captivity greatly and shriek like chimps. There are a few half-grown cats near the cafe also — probably from the same litter — and diners feed them scraps. I saw one of these graceful kitties on the beach last night from our lanai on the fifth floor. Maybe the parrots are watching those kittens grow up beneath their tree and getting nervous.

The water is quite warm and we go in almost every day, although I tend to list to the left from the effects of brain surgery. I can do a sort of frog paddle/breast stroke with splayed fingers. It feels good to swim and the cove is usually calm.

Of course, surviving cancer isn’t about not “giving up.” If that were true, we’d have a lot more survivors. Sometimes the body just can no longer deal with the invasion or we run out of medical options. One of the hardest things for me to consider is that I may have outlived my usefulness on earth. Hopefully some more physical therapy will help my hand. I am keeping up with my hand exercises here. My neurosurgeon said the brain takes a long time to heal. And patience — especially with myself — has never been my strong suit. So we will see how this year goes. Hope there are not too many errors in this post typed with one hand.

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About six weeks ago, I didn’t think I would be able to live out the year. I learned that I have at least two more metastases in my cerebellum, in the balance & coordination area.

Then I suddenly began throwing up and couldn’t stand upright. I drove to the oncologist for rehydration, and they wheeled me right over to the hospital and checked me in.

There is no cancer showing up in my body now, only in my cerebellum. It’s unusual enough that the med team was concerned it was a new kind of cancer. They are reluctant to go through healthy brain tissue to take a biopsy, but a biopsy is the only way they’ll know what kind of cancer it really is. Because of the risks to my motor skills (vroom vroom), they are going on the data they have, which is of course colon cancer.

It seems that a tumor or else some edemic necrotic tissue (from the gamma knife surgery last year) was pressing on my cerebellum, causing the symptoms. After four days in the hospital and a high dose of steroids to reduce the swelling, I was released. Hurray.

I’ll have another brain MRI this Thursday, then meet with a second neurosurgeon the following Tuesday. After that, I will have some kind of brain procedure (probably gamma knife again) to kill the tumors.

I’ll get some time to recover from that, which may involve some PT, and then I’ll be starting some chemo. It won’t be hard and heavy chemo, as I had before (twelve rounds every two weeks for six months). This time I’ll have a couple of rounds, then be allowed to recuperate, then a couple more rounds, etc. — more sporadic. The med team thinks the cancer is lurking in my body on a microscopic (i.e., non-tumor-size) level, and they want to go after it.

All this recent news made my husband, children, and me very somber at first. I wasn’t weepy, but of course none of this is good news.

But we are working through it and treasuring our time together, and now I am feeling remarkably peaceful about it all. I am painting, cooking new recipes, hiking, doing yoga again, enjoying my family and three loving pets, and I’m even doing a little knitting, now that our golden is a year old and not such a terror with yarn.

Regardless of our circumstances, there is always so much to be grateful for. I have wept many tears on our back patio, which is sort of a sanctuary for me. But recently just standing out there and taking some deep breaths of fresh, crisp winter air feels healing to me. It seems to clear my head and give me hope.

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Sometimes people are so sure that if they eat this berry or that concoction daily that they will never get cancer. They forget that the newspaper articles say these things “may help prevent cancer.” They don’t prevent cancer. But they do give us an illusion of control.

Unfortunately, sometimes people get cancer regardless of what they do or don’t do.

I have eaten organic blueberries for breakfast every morning for many, many years. I have eaten well in general — broccoli, cauliflower, very little red meat — and am at a good weight. Got my colonoscopy on time at age 50. Was diagnosed with stage I colon cancer at age 53. Was under an oncologist’s care for three years with regular scans and annual colonoscopies, then was diagnosed with stage IV three years after the first diagnosis. Two major surgeries, brain laser surgery, and twelve rounds of chemo in all.

Sometimes things just happen, no matter how careful you are. People in their late teens and early twenties get colon cancer. Young parents get colon cancer. Runners get colon cancer. Sometimes it happens.

I wonder what causes colon cancer to all different kinds of people. No one in my family has had colon cancer. I hope that medical researchers discover the cure someday for this disease — cancer — that brings so much heartache and loss to families.

I have been blessed to raise my children to adulthood, and I am not afraid of death except that I don’t want to leave my family. But things just happen, accidents happen, illnesses happen, and life can seem very fragile sometimes.

I am an ordained minister — have a seminary master’s degree — and, oddly, I believe there is usually no sense as to who gets cancer and who doesn’t. We are all in vulnerable bodies. We think we have control — eat this, don’t eat that, do this and not that — and a certain amount of that kind of thinking is good. We don’t want to ask for trouble in our bodies by neglecting our health.

But sometimes things just happen to our vulnerable bodies no matter how well we take care of ourselves, and all we can do is manage the best we can and pray for the grace to move through what lies ahead with dignity … and to be immensely grateful for family and friends and the moments that we do have.

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Autumn

I sure had a hard time letting go of summer this year. Summers are short here in Denver anyway, and whenever one ends, I’m never sure I’ll be around to see the next spring. Even with the recent good scans, things can change in an instant. I am learning to live with this uncertainty.

I know that none of us knows how long we have, but it’s very different when you have a serious disease. I try my best to enjoy the time between scans and hope like crazy that the next scans will show that I may have more time.

With all that’s going on in the world that is tragic, it is an odd place to be in. Perhaps I should not be so concerned with my own survival. And yet that is instinctive–to survive. Everything within me wants to live.

Anyhow, the kids’ birthdays are coming up along with Thanksgiving and then Christmas–not to mention painting–so my days are busy. Sometimes I end up dealing with it at night as I try to sleep.

However, I had my PET/CT scan, brain MRI, and seventh (7th!) colonoscopy in October. All results were good. So there is every reason to hope for some healthy time now and ahead.

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My oncologist is straight with me. He tells me the truth. I have made it clear that I want it that way.

I have stage IV colon cancer, and I have been in remission now for over a year.

So during my oncology appt today I asked him, “I know my cancer is a slow grower. It has stayed dormant before and then begun to grow after almost a year.” I already knew the answer to my question. “How likely is it that the cancer is staying dormant right now while I’m in remission, and will begin to grow again in the future?”

He said in his caring voice, “It’s very likely. But I have two colon cancer patients, stage IV, who are now years past their diagnosis. One is seven years out, no sign of disease.”

So once again I am faced with this prognosis: there is hope, but it’s not very likely. But it can happen.

So I can’t sleep.

It sounds to me like I am probably going to die from this cancer…but maybe–although it’s a stretch–maybe not.

Whom do I talk with about this? Cliff is worn out and needs sleep, the kids don’t want to talk about it and they aren’t my counselors anyway, I will wear out my friends if I talk about this stuff over and over. Everybody is too close. And I don’t have a counselor right now. So I am writing about it.

I paint too. Maybe all this sadness about dying a little too soon will find its way into an abstract painting one day. (Well, that will make it all worthwhile….)

It’s weird to think that in a year or two I could be not here with my family, but instead cremated and scattered.

Or I could be one of those oncology patients still walking around, and people are thinking, “What, she’s still here?”

It could happen.

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Sixth colonoscopy

I have an appointment with my colon surgeon tomorrow. I am due for my annual colonoscopy. My first colon cancer spread to my lungs, and the doc says that I can always get new cancers, thus the yearly colonoscopy. Tomorrow he will give me the prescription for the prep and we’ll make an appt for the colonoscopy.

I have had five colonoscopies. One year I messed up the prep instructions, and the colonoscopy actually had to be rescheduled. I would rather not have that happen again; it’s pretty embarrassing not to be able to follow basic instructions.

So my sixth colonoscopy draws near. I’m not ready for this prep, not when I’m still dealing with the effects of my second bout with shingles. I was in the hospital for three days last week, sick, in pain, and throwing up. It would be nice to have a little respite before I have to deal with the nausea of the colonoscopy prep.

I should be valuing the colonoscopy because it means early detection. But I dutifully had a colonoscopy in 2002, and it was clear. Either the doctor (not my current surgeon) didn’t see the cancer or it hadn’t begun yet, because in 2005 I was diagnosed with stage I colon cancer. Then, even with annual colonoscopies and PET/CT scans every three months, I was diagnosed with stage IV colon cancer in 2008.

I feel like I should be cancer-free. I have been the poster-child for getting tested and being proactive. But still I got colon cancer, and still it progressed to stage IV.

So although I’m very grateful to have health care that covers colonoscopies, I have mixed feelings about actually having them. I have to deal with this anger and sadness every year. I did what I was supposed to do, and it didn’t matter.

Many of us have this story, whether at home or at work. We feel like we fell through the cracks somehow, and we feel alone. Of course, we are not.

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Our path

Ann on the path

Ann hiking

 

Isn’t it interesting that each of us has to find our own unique path in the world. Even with the billions of people who have lived on this earth, none of us has had exactly the same course of our life.

 

I guess with all the variables in a lifetime and with the changes from generation to generation, this isn’t all that surprising. Still…

 

…it makes each person’s quest unique — for meaning, for peace, for survival. Sometimes we lead long lives and sometimes short lives. But if we have the time and the ability, we can question and perhaps find the route we would like to go.

 

For me, the answers have become simply being, resting in quietness and enjoying the richness and simplicity of each moment.

 

But I no longer lead a hectic life. My children are grown, my marriage is happy, and I left my hospice chaplain job. Life slowed down after my diagnosis of stage IV cancer, and my life took a different turn.

 

I decided to give a lot more time to creative and outdoor activities. I began sketching, painting, and walking and hiking more.

 

I love the time that I have.

 

 

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What is.

A CT scan is looming next week, and I have been dreading it. I’m not usually afraid of these cancer tests, but it has been five months since chemo ended, and I don’t know what’s going on inside me.

Well, that’s what the scan is for—to find out what’s going on. I still go into the chemo ward every other week for an infusion of Avastin, but that’s the extent of my treatment right now.

There are so many difficulties and tragedies in the world that it seems trivial to worry about a CT scan result. Yet, when something threatens our life, we are usually determined—instinctively—to fight it.

And I am.

Today during a quiet time I remembered this bit of wisdom:  “What is, is.”

And I realized that the scan in itself is nothing in fear. The results are non-emotional; the scanner is just recording what is.

I am making peace with what is. If cancer shows up on the scan, I will have treatment options. If it doesn’t show up, I will be relieved. The scanner is only recording what it sees.

And monitoring “what is” may save my life.

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Windy afternoon

I just finished walking the dog for a mile, with the crazy wind blowing my hair every which way. Then I poured a cup of coffee and sat out on the back patio, listening to the wind and feeling the gusts across my skin.

This is where I want to be in the world – in my neighborhood, in my backyard, in my own home. Maybe Cliff and I will do some traveling in the future if it works out, but if not, it’s okay. I love the beauty of the earth that is within my reach.

As far as my physical condition, the fatigue is lightening up a bit, thank goodness, but the neuropathy in my hands and feet persists. I need to be patient with that, because the docs said the nerve endings have to regrow, and that takes a while. We’ll see how much feeling is returned to my hands and feet.

I have been painting quite a lot. Last week I got frustrated and felt that I would never improve. So I took the powdered charcoal into the backyard on a windy day and threw the charcoal onto some watercolor paper. Then I poured water down it.

The papers kept blowing over, so I ended up with an interesting mixture of gray charcoal and brown dirt. I got most of the dirt off, but the little that remained seemed earthy and appropriate to me, so I let it be.

I created some things I liked and some I didn’t. But at least I have a place to start now, which is better than sitting in my studio and thinking dark thoughts about my art ability. I will post photos soon, but I have to finish the art pieces first.

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Slumber

The day after I completed chemo, I just slept. After my morning appointment, I crashed and slept all afternoon.  I awoke to fix dinner and take a phone call from a dear friend, who thankfully was very kind about my incoherent and sleepy self.  Then I fell asleep again. At 9:30pm, my husband woke me and tucked me in bed and I slept until 6:30am.

I guess the excitement from ending chemo was just too much for me, or else I just have a very worn out body—maybe a little of both. Anyway, sleeping seemed like a very therapeutic thing to do.

Anyway, today I was back at the gym on the elliptical and in the whirlpool, which felt very good to my neuropathy. Warmth is comforting, even if it doesn’t help the neuropathy disappear.

I try to be kind to myself these days. I may have many years ahead of me or I may not. But I am doing my best to spend whatever days I have listening to what is deep within me and abiding in that peace.

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