This Planetary Pilgrim is Feeling Well Today. And celebrating!

David and I are going the the Stratford Festival this evening. Going to see Twelfth Night. This has been a good year for us attending the Festival. We have gone several times, but tonight is a special celebration night for us.

We are celebrating my graduation into the second series of Chemotherapy injections. Pilgrim friends, say hi to my new drug Taxol!  The best thing is that I don't have to worry about nausea with this new concoction. The bad thing is that there may be pain as a side effect. However, I have my prescription ready, and gladly will follow instructions and keep resting and minding my body's requests. As Sara says, we will get through this.

We are also celebrating our new awareness that the cancer which had invaded me in the form of a lump in my left breast and then had moved on to 8 of ten lymph nodes, should be seen as GONE. My oncologist clarified this for us this week, reminding me that the chemo I am undergoing and the radiation treatments to come should be seen as "adjuvant" treatment.

So what is "adjuvant"? To quote the very popular Wikipedia:

An example of adjuvant therapy is the additional treatment usually given after surgery where all detectable disease has been removed, but where there remains a statistical risk of relapse due to occult disease. If known disease is left behind following surgery, then further treatment is not technically adjuvant.

Wow, can you imagine how we felt? We, David and I, are pretty educated people, yet we had not absorbed this either intellectually or emotionally. So, up to now, we have been living with cancer, rather than living as survivors of cancer.

This is a huge emotional difference, and it is worth celebrating with loud alleluias, and trips to Stratford. (To each her own!)

I feel well today. My baking hormones seem to have been awakened, and I made banana bread with some over ripe bananas. Also made olive and onion bread from an old Greek recipe. The kitchen smells wonderful, and sweet David keeps making short trips to the kitchen, in hopes of some samples...

Lots to do and lots of waiting and work on my health yet. The next three chemo sessions are going to take five hours, instead of three, because taxol is infused more slowly. Staff are very mindful of reactions during the administration of the drug. It makes for lovely opportunities to chat with my nurse, get to know her better, and to offer my respect and gratitude for the amazing work that they do.

My veins were described as hard to find, very small. and flat. (I should be proud that anything in my body is small and flat!) What this means is that it is difficult to find them and to get a site ready for the infusion. One amazing nurse, in particular, is a very knowledgeable and something of a magical person in her experience locating small, flat veins. With enormous respect I called her a fine scientist and witch. Thank God that she understood my meaning, and told me later in the day that she had taken it as a huge compliment. That is how I had meant it, of course.

How blessed our region is to have such a superb Cancer Centre! There was a time when we had to travel far afield for these services, now they are available right in Kitchener.

I have to go. Must get prettied up for my trip to the theatre tonight; we will see each other around, soon, on the way to Santiago.

Planetary Pilgrims get Philosophical Sometimes

Pastoral Care for Someone Living With Cancer
I am still thinking about some of the things I heard at a workshop on living with cancer, which I attended some years ago. The more I think about it, the more implications I see for pastoral care. Cancer (together with AIDS, which often renders the patient susceptible to cancer) is the new "leprosy". 

There are many aspects to this condition that isolate patient and family, even at the very moment that the community wants to offer support. 


Shock and horror - together with the inevitable sense of relief that "Gee, I hope I don't get it", with the attendant feeling of guilt and pity, all conspire to make for a huge power differential between the patient and others in the immediate and extended community.


Loss of self - patient, family and the entire circle of friends become saturated with the crisis, and the patient, even though at the centre, can experience a loss of selfhood. One knows that people are talking about one's condition and about how one is feeling. There are huge expectations to "fight a good fight", a "courageous battle". To what extent does a person feel like wearing a mask to keep people from constantly wondering how one is doing?

"How are you doing?"  - I wonder how many times patients would like to answer: "Well, I feel crappy, and am scared shitless that I'll die from this, I am damned bitter about having my hopes shattered, my family life threatened, my kids having to do all this work on my behalf when they should be launching their career. I am pissed, and sometime I feel sorry for myself, and utterly alone. I lie there next to my husband, and am afraid to touch him, I could not stand his rejection. So, he lies there afraid to touch me, lest he hurt me! A fine pair we are..." 


Crazy making language - you are fighting a battle with cancer, hating the tumour means hating a part of yourself. We tend to demonize a tumour, yet at a certain level it is a part of your body. Radical procedures such as a mastectomy mean rending, tearing, cutting off a part of your body, which you mourn. And the worst cut of all: a cancer cell is one that has been “favoured”, somehow, it is a cell that is growing and doing much too well (in the illogical logic of Cancer!). 


Living with a death sentence – there is a sudden awareness of this, a sense that one is "condemned". People begin to see you as tarnished, it becomes the chief part of your identity. People struggle with what to say. To make it better, patient ends up comforting the care givers!


The human body is a time-limited offer - yet Cancer seems to be an intruder, much more than other conditions. We are not always logical about living and dying, yet there is a “cancer logic” that seems to insist that Cancer is a curse. Some groups do not even like to utter the word Cancer. It is as if, by magic, one could bring it on oneself by speaking the word. There is a sense of “blame” associated with Cancer that is not present in, say, Parkinson’s, or Multiple Sclerosis. Why is that? When Cancer is detected early, the medications sometimes make you sick, very sick, long before the symptoms of Cancer make you sick. Another example of the craziness of living with Cancer. Do I have to feel guilty because I cannot see that pain really has to come before gain? What if I don’t gain?

Role of alternative methods – While we encourage people to take initiative and a proactive stance toward one’s health, the moment a cancer patient seeks alternative methods we seem to assume that the patient is in denial, or desperate. Why is that? If extracurricular activity is what makes you really feel that you are alive in high school, how can we ensure that we do extracurricular activities when a person has cancer? We have not yet begun to explore fully the role of intentional stress relief activities and lifestyles.


Where is God in all this? -  Where do we begin to give the message that life is short, always too short, but ever so precious? When do we begin to acknowledge that quality (not length) of life is a patient’s right, not a luxury? When do we begin to acknowledge that education about how to relate to a friend or loved one who has cancer is a huge part of the healing process? What does “teach us to number our days so that we may grow in wisdom (Ps. 90:12)” mean in this context?


And when do we stop telling a person that they must stay positive? - My friend says: "If someone tells me one more time to stay positive, I will scream!". What does that mean, exactly? How do you stay positive? What if you are not feeling well? Does that mean that you are not fighting the good fight and staying positive? Hmm...
 
I am feeling good today. Really good. I vacuumed, cooked a pot roast, and made a really delicious spaghetti sauce, with lots of garlic. I am going out shopping with David soon. 


This felt like a good day to jot down these thoughts. I have been wondering how my experience with cancer will affect the quality of my work as a chaplain. So, I thought I would jot these thoughts down. They are not original, and some I have written before.
 
On the way to Santiago, there is a field where people have created stone cairns, hundreds of them, one stone at a time. Today, with you, on the way to Santiago, I am placing one little stone on one of the cairns, to symbolize my thoughts as a chaplain who will return to work someday. And we will see you around, one pebble at a time, on the way to Santiago!

Getting Ready For Part Two!

After the halfway mark, my doctor has informed me, the chemo cocktail changes. Two ingredients will be dropped and a new one will be added.

I will be welcoming Paclitaxel, commonly called Taxol, into my life. This medication is used for the treatment of ovarian, breast, lung and other cancers. It is infused into the blood stream over a number of hours.

Because allergic reactions may occur during the infusion, my chemotherapy nurse will be very alert in watching for any reactions such as back pain, flushing, shortness of breath, chest pain, dizziness, itching or rash. It will be given slowly, to ensure that the infusion goes safely.

The more common side effects will be chills, cough, low white blood cells, numbness and tingling in hands and feet, muscle or joint pain, nausea, shortness of breath, and thinning or losing hair. Lovely! We will meet whatever comes and try to do our best.

Because I have diabetes, I have to be careful about the fact that certain medications I receive tend to raise the blood sugar levels too much. I am trying to maintain a balance between the medications I can control, and the carbohydrates I can avoid. Soon I will be meeting my endocrinologist to make sure we are on track with all this.

All of these developments have given me a renewed appreciation for the science of pharmacology. A very helpful and empowering part of my treatment has been the "Pharmacy teaching" component. The pharmacist explains everything, and shares printed materials regarding the drugs. This has made me feel like I have some control of the information, and a more concrete idea of what awaits me.

Waiting, preparing, looking forward, visiting with my daughter, talking with family and friends, and moving toward the next time. Moving, ever closer, and we will see you again, soon, on the way to Santiago.

THIS PLANETARY PILGRIM HAS PASSED THE HALFWAY MARK!

So I have passed the halfway chemo mark. There are many ways to celebrate this, and we will celebrate all weekend, but there is no better way than to echo my Muslim friends: "al hamdu li llah!" This phrase is on my Muslim friends' lips night and day, and it means "Glory to God" -- for the good things and for the perplexing surprises, and even for the hurts and aches that we meet in life.I have learned a great deal from this attitude.

What does passing the halfway mark in my journey with chemotherapy mean to me and my family? It means that I have completed 4 out of eight treatments. It once seemed that we would never get this far!

Time hangs heavy when you wait. If you don't believe me, check out that Sesame Street Monsterpiece theatre video parody on Waiting for Godot. I love reading and staying busy. I am not affected by boredom. And I am a cheerful person that is interested in many things. But chemo takes the wind out of your sails. You get tired, and are at risk of becoming depressed.

Depression is a window that I have had little exposure to in my personal life. I get fraps and freakings out, but not depression --some people would say that I am not likely to get a heart attack, but am likely to give a heart attack!

So the waiting has been heavy. And this is where friends have come in. Mieke, Marian, Kathy, Lynda, Debbie, John, Sara, Pauline, Lucia, Wasan, Elaine, Mary, Douggie, and so many others! Coffee and Greek food at Melitsa's on Belmont, a sandwich at Vincenzo's, Tim Horton's visits and a RRoll up the Rim card! Such delights! Therapeutic tough has been an amazing resource to keep me focused and relaxed. Emails from far and near, and a special chapter dedicated to my children's friends. 

And family! My sister Grace who took me shopping for eyelashes (which I have not needed yet, Grace, but I am ready!) and gives me courage in word and deed every time we talk, and my sister Pichi who came from Puerto Rico and helped me figure out pharmacy information on chemo and also gave me some not-too shabby lessons in courage.

Two metaphors of grace and beauty characterize my wonderful sisters. Through hell and high water, I imagine Grace as a smooth, strong, classy and determined biker, moving along the bike paths in New Jersey, and in Manhattan, by the river. It is not always easy to meet the challenge of the wheels on the path, other bikers, the sun in your face, and of muscles asking for a break. But she keeps going, despite interruptions and pain, sure to reach her goal.  And I imagine my other sister, Pichi, as a resourceful bullfighter, now shaking her red cloth, now turning away in disdain from the bull, now coaxing a response, now taking a serious aim, silently assessing problems with unshakeable faith. How did I get two such strong women for sisters? Parents, perhaps? Have their children shaped them? Work? Faith?  Three metaphors, the Biker, the Bulfighter and the Pilgrim. Thinking about each metaphor has helped me to survive these four weeks, and  will help during the four treatments of the next eight weeks

Carolyn, my other sister (she is David's sister) has been here this week. It has been fun, and very helpful, as she accompanied us to chemo yesterday. Today she is helping us to get our home ready for my daughter, who arrives soon from Ottawa for a visit. What a blessing she has been, supporting, talking, laughing with us.

Lots to write about. a chapter on my David coming soon, and on my children. They are part of my symbols of pilgrimage.

And a simple chapter on the pharmacology of chemo, and how that will change during the next four treatments.

Off to the airport, to get Ioanna, and we will see you around, soon, on the way to Santiago!

Some Times Planetary Pilgrims Lose the Filter Between Their Brain and Their Mouth!

The pharmacist warned me there would be days like today. Some medications make you have up and down mood swings, and you might speak out of the wrong side of your mouth. Today, it happened.

My friend Sara kindly came to visit during the third chemo session this afternoon. When I told her my little story, she laughed and said "I guess you lost the filter between your brain and your mouth!" How right she was! How important those filters are, and how much we need them as part of the ever-so-essential lubricant in human encounters!

It all started in March, when lymph nodes were removed from my left arm. As a result, I only have the right arm available for taking blood samples, or for injecting IV medications. I am still getting over this. It feels like a big loss, and I might be worrying about it more than I thought I was. 

When my nurse tried to find a vein this afternoon I was somewhat anxious. After she had rubbed my arm for what seemed like a long time,  a   l  o  n  g    t  i  m  e,   I heard my voice saying very sweetly "You can't find it, can you?" (It was indeed my voice, I can confirm this!) 

Eventually a vein was found; I was gently pinched, and a needle was inserted. Shortly afterward it was taken out with the explanation that the vein was not responding properly. 

When one has little to worry about, one worries about little things. I could feel my stress level rising. After a brief dialogue about "what happens next?", my nurse asked a colleague to try the procedure. This second effort was successful and  we were off to the races.

I am mentioning this as an example of how simple my concerns are these days - whether we find a vein! Hello!!! Of course we will find a vein! 

Also, I am telling this story as an example of how one stresses over whatever - big or small - is on the horizon. 

A third reason is the lesson I learned  about "filters", as my friend Sara helped me to identify.

I need to stay alert, to hear my voice. I cannot always stop myself, perhaps, but I can listen. Today I was able to speak kindly to my nurse after my chemo, and to thank her for trying so hard to get me started. 

This evening I was reminded of a good Psalm for Planetary Pilgrims. Listen to a few lines:

"... You have searched me and you know me, you know when I sit and when I rise, you preceive my thoughts from afar. ... you are familiar with all my ways. Before a word is on my tongue, you know it completely. ... Where can I go from your spirit? Where can I fly from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me..."

I need to be aware of my humanity, cut myself some slack, even on days like today. I need to listen to myself, to be aware that before a word is out of my mouth, a power greater than I is present in the encounter. I need to listen, to trust myself, to be willing to admit it when I blow it, and to make amends in good faith.


Today I had my third chemo. Five more to go. Now I must go take my magic pills, to ensure a minimum of side effects. Tomorrow I get to go with two darling friends to Tai Chi at Hope Spring. Will tell you about it later. 


How lucky I am.We will see you again, listening and staying mindful, on the way to Santiago.