English is not my mother language ...

One year after my chemo started, here I sit again, looking out my living room window at the same maple tree. That chemo treatment has long been completed. We all thought that after radiation, I would return to my everyday life, wiser, but pretty much unchanged.


Here I sit again, a year later, looking out my living room window, seeing my gorgeous maple tree. Two days from today I will start the oral chemotherapy that I expect will follow me all the days of my life. It might make my life easier, the pain less severe, who knows? There will be other treatments - radiation, bone strengthening medications ... A couple of weeks ago, one of the doctors told me: "The goal will be to keep you comfortable, to maintain the pain under control." 


I can't remember which doctor said that to me. But I thought, "Oh, you are so smooth. This is how we speak English in South Western Ontario."  The goal is to keep me comfortable, not to cure; for there is no cure. And if you miss the phrase, and don't ask for confirmation of what you just heard, it may be quite a while until you finally get it. 


When you ask a question about timing, they tell you that "Statistics show the the majority of patients in similar circumstances are able to live two years with treatment." Or something like that. We don't have the final scans that will tell us where I fit in those statistics.


English is not my mother language. I did not learn it at my grandmother's knee. There are a lot of little subtle nuances to English - to any language, really, but of the languages that I know best, English takes the prize. Yet I long for clarity, and so I ask impertinent questions, out of season. Before it is time for questions, I often ask for clarification, for then it is easier for me to cope with the real meaning of what it being said. 


So, to get back to the goal of treatment, the goal is pain control. We surely are not there yet! I ache, and I hurt. My sweet Prince David and I have long and involved discussions, scholastic conversations, about when did I take the one pain pill, and whether is it time for another pill to deal with the breakthrough pain. We discuss with amazing seriousness whether the pain might be from the cancer or just arthritic pain that is getting worse, and should I not also take a Tylenol, then? 


Further, there is the issue of carefully documenting what I take, for I often forget three minutes after having taken something. Yes, I have a pill box, and soon we will be graduating to a mega-pill box! Some pills are to be taken as needed, so I do not want to mix those with the regularly prescribed ones. I would not like to take them just because they were there, rather than because I really needed them. 


Today is a beautiful, sunny, Victoria Day. The birds are having a field day, singing to their heart's content. There is a cardinal who deserves an Oscar for best song of the year, right out my bedroom door. The iris is in bloom in the front garden. In the back, the bridal wreath spirea went crazy last week, and has almost bloomed itself out! Next to it, the peonies are about to burst. at least two weeks before their normal habit in our garden. A lot of flowering bushes are working ahead of schedule, telling me: "Do not worry boss, we will keep on blooming; we know how to do this." 


My mother grew huge carnations and hydrangeas. She had grapefruit and mango trees in her back yard. My dad was a skillful farmer, cultivating vegetables for the whole neighbourhood until he died at 78. My grandmother grew her own coffee. I am happy that both my children enjoy coaxing beauty and nourishment out of the soil, and are passing their delight in gardening on to my grandchildren.


Those reading these words might be thinking that I seem to be concentrating on the minutiae of life rather than the ostentatious and pedantic topics of cancer treatment and recovery. You are damned right! I am concentrating on the details of living; I'm keeping my spirit alive and well fed and watered. I am concentrating on clearing up the clutter of my mental closets and bookshelves, and mind. When my nephew in Greece reads this, I want him to know all about his aunt Myrta, with all her wrinkles, rather than to learn about potions, and medicines, and conditions that he can find through Google!                                                


Recently a friend asked me how I stay calm. "I would have been freaking out!", she said.


First of all, I have discovered that when you have to do something, you pretty much do it: put one foot in front of the other and keep walking on. Pilgrims know that. When you are in the middle of a muddy field, you cannot quit - you may decide to quit later in the day, but at that moment you have to keep going and get out of the muddy field!


Sometimes cancer is discovered long before one has any discomfort or pain. In that case, the first signs of discomfort and illness come during the treatment for a disease that has not yet begun to make you sick! 


In my case, this second time, the pain came first, and then the chemo. The reason for this chemo treatment is different than the earlier time. You have to have a different mental framework. You cannot say, "be patient, consider the alternative. In sixteen weeks this will all be a memory, and you will get your life back." 


It is easy to feel discouraged or afraid, weary of the changes in one's daily life. " When can I have my life back, my energy back?" This time, it is different:  I have to say to myself, you have your life! This is your life. Maybe the flowers blooming out of season are trying to teach me something. Don't look for schedules, and get confused or upset because they came out of season! "To every thing there is a season, and a time to every purpose under heaven." 


I admit that there are moments, late at night when I am tempted to ask questions that have no answers.I have not yet asked "Why?" My questions have more to do with being a wife, a parent, a friend.


Once or twice I have had conversations, around 3 a.m., with a friend who did not make it. Ted was a wonderful friend, a carpenter and maker of beautiful kitchen and office furniture, . He was a good dancer, a loving father, a loyal friend, a man who lived his faith both at home and out on the road. His wife has been a good and loyal friend to me during this time. 


My conversations with Ted are rather one-sided, I admit, for he has been gone for more than 15 years.  I must imagine what he might say to me. So, I have not asked my friend to tell me anything. I have merely asked him to shine a light for me, as an example of courage, love and steadfastness of purpose. 


So far, it is working. And we will see you around, with the flowers, and Ted, and a great company of planetary pilgrims, on the way to Santiago!

Why do I feel so calm?

Why do I feel so calm?


The tears: quiet, hot tears flow from my eyes, and yet I feel calm for myself. I worry for people that are dear to me - how will this new knowledge affect them? 


How is this new knowledge affecting me? Am I angry? Well, no, not really.Well, maybe yes! Who is ever ready for this?


 I am thinking, however, something like this: "Sorry, but please don't tell me that I must look out for myself! Actually, no, I am not sorry, just don't tell me that I have to look out for myself. Just don't go there. Of course, I will look out for myself! But I also have a family, and while I have life and breath, I will look out for them, too." 


And don't tell me to stay positive!!! OK?? Of course I will stay positive. I find that this is something akin to laying a new burden on me if someone tells me to stay positive. I feel this way: "What if I don't stay positive, what if I should become afraid, or angry, or negative? Is the cancer going to become worse? Will I be punished because I did not stay positive?"


In the next few days I am going to concentrate on the wonderful question one of my friends asked: "What can I do that will help?" That was such an amazing question! For now I will say that I have found the love and caring that I feel from my friends to be the most helpful. And just think of it! Love and moral support is free to give!


I thank all my friends for that, and look forward to walking this new Camino. Do I welcome it? No. Did I wish for it? No. Did I ask for it? Hell, no! Shall I get under the bed, and hide? Sorry, but that is not on the agenda. This new Camino starts on North Drive, and it becons us to go out and follow. 


Later this week I will tell you about another Camino (of sorts) from Jerusalem to Emmaus. 


Today we met with amazing doctors at the Grand River Cancer Centre. They were competent and sensitive, mindful of my feelings. They explored with subtle vigilance, seeking to discover how we were taking the news. Would they have to give the information in several doses? Would we be open to hearing the whole story? I appreciated that; it enabled me to state my wish for clarity and openness. They gave me that.


We were blessed to have Dr. John Lockhead accompanying us. John is a talented friend, acquainted with pain, both physical and spiritual, and familiar with the care of the body and the spirit. His presence enabled us to have a third set of ears to hear the information and another mind to absorb and ask questions.  "Thank you" seems like such a paltry phrase, John!


I will understand better this coming Friday when I meet with Dr. De Carolis again. Until then, I have received a new prescription to keep the pain under control, and I am comforted by the fact that on a first examination she did not feel bumps or lumps on any glands or on my liver. There will be further tests to determine this for sure, but for now I will start on oral chemotherapy, and pain management. I also have to get a little dental issue taken care of, and then we're off with the chemo and/or radiation.


Will I lose my carefully grown hair, now that it looks wonderful again? Maybe not, but, you know what? Compared with seeing my grand kids, my children and their partners, and my husband, what's a little hair loss if it should come to that?


Off we go, May is the best month to start walking, so I will see you around, with my dilaudid and chemo, on the way to Santiago!

Here We Go Again!

Today is the 10th of May, 2012. Eight or nine months ago I had finished my Radiation therapy, the Chemotherapy time was becoming a memory, and I was getting ready for a lap around the Eastern Mediterranean with my husband David, and my sister and brother in law. My only concern then was staying out of direct sun, and not overdoing things, for I was a bit weak and tired easily.


As my treatment ended eight or nine months ago I felt no great euphoria, but I was generally content. I looked forward to going back to work at St. Mary's Hospital. Life was good: I had a wonderful husband, two really nice children and the smartest, most beautiful grandchildren that you ever could imagine.


In November I went back to work. My return to work made me feel not only that life was good; life was also normal! On the 24th of November we attended a fund-raising dinner in my honour, sponsored by the Kitchener Waterloo Multicultural Centre. What a magical evening it was! I loved seeing so many people, from different parts of my life, enjoying a fine meal and a good time together.


Christmas was a wonderful time. My son John and his partner came to visit from California. We went to Ioanna's house in Ottawa and enjoyed children's games, a beautiful church service, good meals and laughter, lots of laughter.. For the first time I went out in public without my wig -- my hair was finally long enough!


In January we went to the lake and experienced the winter landscapes so typical of the Addington Highlands region.  Life was indeed good. 


I started getting a pain in my ribs around the 9th of January. At first my doctor  thought it was reminiscent of shingles pain. Soon after that, however, it was clear that the pain was concentrated around several ribs. A bone scan and a bone density test showed nothing suspicious, other than three broken ribs.


In January there were pain killers, waiting for the ribs to heal, a fainting spell in the elevator at work, and all kinds of tests as a result of that. I continued to work, still feeling pain, but taking pain killers and waiting for the ribs to heal.


A trip to Cuba in February allowed us to enjoy the warmth and beauty of a beautiful country and of a fun time in the sun and sea. I was still in pain, but felt the ribs were healing. I kept taking my pain killers.


Easter at the lake with my daughter and her family and with David's sister Carolyn, her husband Gord and their son Malcolm. The holy day brought the enticing aromas of Easter cookies and bread, lamb, ham, and the glorious assurance of new life after the dead winter. Resurrection was all around us, and also the delightful news that Malcolm and Suzanne were expecting a child in the summer.


More pain killers, and more waiting for the ribs to heal. My doctor thought it was time for an x-ray. That showed that the ribs were healing. But why the pain? We discussed metastasis. "I will send you for another scan and if it is what we think it is, I will refer you to Grand River".


It was what we thought. The report states that the considerable change between the January and April scans is "consistent with metastasis".  This was followed by another referral to Grand River Cancer Centre. My appointment will be on the 15th of May. 


Last week was not an easy one. "Here we go again", I thought. I asked myself "How do I tell my son and my daughter?" It is easy to tell good news, but how do you communicate bad news on the phone? You cannot see facial expressions. Even the voice can play tricks through the phone lines. How to interpret silence at the other end? How do I keep my voice even and steady? How do I keep from chattering idle words? Will I be able to  sound balanced and calm, or will my voice break? 


Finally, I asked myself, "wouldn't my children prefer me to be honest?"  My children are grown up and have a trusting relationship with me. This last question helped me to focus on telling my children the truth, without minimizing the issue. I realized that they would want to know as soon as I know, rather than have me manipulating the truth and the timing. Our conversations last Saturday, while serious and sad, were inspiring, loving and encouraging. 


My husband reminds me that I never closed my blog last year. I know. Why didn't I? Was I weary of sounding too over confident? Was I waiting for the other boot to fall? Was it just another example of my inability to process goodbyes?


Today I am thinking, here we go again. How do I deal with metastasis? How do I stop doing the job I love? How? Was this supposed to happen? Why do I feel so sad? 


Then I ask myself, "Is it time to take to the road again?" Yes! Again we set off on the road to Santiago. We are not there yet. We walk, get tired, fall, get up, walk some more, take a break, get tired, make the wrong turn, come back again to the main road. The Road to Santiago continues to be a metaphor for life. Now more than ever, walking to Santiago is the best metaphor for this life we are living. Thank you David, for reminding me that I did not close my blog last fall! The way to Santiago continues, this time through the land of metastasis. I invite you to come with me, let us go, the road is waiting; the pilgrimage continues. 


... and we will see you again,  with the pain and a few broken and cracked ribs, with a few tears now and again, with joy and laughter and hope. It is a different kind of hope this time, but we will always be hopeful, always exultant, moving toward a shining goal. We will see you again, on the way to Santiago!