The right to choose

"In this world nothing is certain but death and taxes." - Benjamin Franklin

“I’m planning to live forever. So far, so good.” - Unknown

No one gets out of this life alive… yet death is a topic that most of us shy away from discussing, especially with those people that we love the most.

Well, I have news for all of you healthy folks out there: people with cancer are thinking about it and sometimes even talking about it with one another.

No, I’m not being negative. No, I’m not dwelling on it. It is just a reality of life that I want to consider before I’m in a critical situation and can no longer speak for myself.

In this week’s Kingston Whig Standard column, Sue Hendler asks the question:

Should we have the right to choose death with dignity, peace and care?

My answer is a resounding YES.

You can read other columns written by Sue Hendler by clicking on her name after Labels below.

Right to die Society of Canada

Book club Part III: Adventures ... and Lessons Learned

In this week’s book club assignment on the Last Lecture by Randy Paush, Dennis Pyritz asks the following questions:

In the beginning of this section Randy has met his pancreatuc cancer head-on, asking for the most difficult treatments available. He seems to be in remission. But at a follow-up visit, he discovers not only has he relapsed but has extensive metastases. If you have dealt with relapse or metastasis, how did it feel? How did you deal with it?

I used to think that if the cancer came back that I wouldn’t be able to cope, that I would curl up in the fetal position and cease to function, that I would get stuck in what I call ‘the dark side’. And I did just that for awhile. But that gets boring and miserable after awhile, so eventually I just put one foot in front of another and continued to move forward.

In ‘The Man in the Convertible” he relates how difficult it is to judge just how well you are doing emotionally when you are in the midst of your struggle with cancer. How did you make that determination?

Sometimes I wonder why I haven’t become a basket case during this journey. (Well… I have had my days…). But for the most part I think I am dealing with it better than did some earlier non-life threatening crises in my life. Is age and maturity a factor? Am I in denial? I'm not sure why I am coping as well as I am and sometimes feel like I'm holding my breath, waiting for the crash.

In “Jai” Randy relates that his wife kept her own journal and that it helped her deal with all those “little” issues that can nag a relationship. Has your partner tried a journal? or something else that helped? She also found that having conversations with other caregivers helped. Does reading other blogs help your spouse or just make it more difficult?

I don’t think my family members write journals and I’m not sure how much they have talked to others about it. I did arrange for my mother to meet with a social worker that I know at the cancer clinic and I think that was very helpful. My son tells me he doesn’t read my blog often because he finds it better to deal with it in chunks, rather than on a daily basis. Living in Europe (I’m in Ottawa and he’s in the Netherlands) has made it especially difficult for him.

I know that my mom has a hard time reading my blog at times and I’m pretty certain that my family does not read other blogs. Being relatively private people, I suspect my family is a bit mystified at why I would choose to share my feelings in such a public forum, but they support me in dealing with things in a way that is most helpful to me.

Being Cancer book club
Previous book club questions

Read about how others have coped when cancer has returned

Dutch art

One of the many things that I love about Holland is the art. Not just in the museums, but on street corners and in the squares you will find random pieces of art for your amusement and appreciation. I took the picture below at the beach.

The next 2 pictures were taken in a square not far from Adam & Tara's house. From a distance it looks like a rough round of wood but the detail is amazing.

I spent some time a few days ago at the M.C. Escher museum in Den Haag. You can get a bit lost trying to figure out how he created some of the impossible structures and sketches, many of them morphing from one creature to another (i.e. fish to birds).

Escher's art is fascinating and at times a bit twisted. I was drawn to the eye below. If you look closely you can see a skull in the pupil.

I'm turning into my mother

After Adam left for work this morning I noticed that a garbage truck was in the street and he hadn't taken out the trash. So I ran out with a garbage bag to make sure it made it to the truck.

I've been cooking and running errands and tidying up during the day and it suddenly occurred to me that I've become my mother. That's what she does when she visits me - she 'takes care' of me. I think I'll just let her do it in the future, without protest, because I'm realizing that it feels good to do things for your children when you visit, even when they are grown.

I guess it's just a mother-thing.

Learning from Elton John about how to write a bucket list

Sue Hendler's latest Kingston Whig Standard column is called: Learning from Elton John about how to write a bucket list.

Although we both attended the concert, things were too chaotic for Sue & I to connect that night. However, it was good to know there was another kindred spirit in the crowd; both of us enjoying the concert from our separate seats; both checking off something from our bucket lists that we had wanted to do for years.

Learning from Elton John about how to write a bucket list

My bucket list

You can read other columns by Sue Hendler by clicking on her name below, after Labels.

The Healing Chemistry of Tears

I subscribe to a weekly affirmation from The Cancer Crusade. This week's offering is titled The Healing Chemestry of Tears.

"I desperately needed and wanted to cry, and yet everyone kept telling me not to, that that would be "giving in to it" and evidence of a "negative attitude." I began to believe that if I cried, it could actually cause me to die. I thought that I would not die of cancer, but of negative thinking."

Have you ever felt this way? If so, you might want to read the full story.

The Cancer Crusade

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Road trip

The surprise was... a flight to Prague and a road trip through the Czech Republic!! After a day spent visiting Prague castle and checking out the amazing architecture in the city, we headed south through Bohemia, to a fairytale-like town called Cesky Krumlov. We continued on through Morevia, with several stops in interesting little towns and villages, drinking beer and eating sausages with the locals, spending a night at a farm B&B in the country - complete with goats in the yard and a rooster outside our window to make sure we got up at a reasonable hour.
Most of the driving was along roads that zig-zaged through small towns and villages, or at other times, through dark forests with trees so tall the sun could barely peek through.

It was a special 4-days spent with Adam; an experience made even more precious because he arranged it as a surprise for me. I am one lucky mom!!

The mystery continues...

I just got a text message from Adam at work telling me to pack a bag for a few days. I'm not sure where we are going but it's exciting!!

Dutch Injection

I went to a doctor in The Hague (Den Haag) this morning and had my monthly injection of Fulvestrant (Faslodex). Refridgerating the drug on the plane was the hardest part; the actual injection was quick and there were no problems. Now that's done, I can relax and enjoy the rest of my visit.

Adam is taking tomorrow off and is being rather mysterious about what we are doing...

Food, glorious food

I am eating my way through all of the pastry, cheese and broodje (sandwich) shops in Den Haag. As you can see, it's hard to resist.

Grocery shopping is interesting in Holland. Everything is sold in very small portions (no Costco quantities here), probably because their fridges are so small.

I decided to make dinner last night but baking powder, baking soda and turnips were not to be found. I settled on Stuffed Chicken Parmesan, mainly because it was the one thing that I could find all of the ingredients for.

Stuffed Chicken Parmesan

The Last Lecture

Dennis Pyritz has started a book club on his blog called Being Cancer. What a great idea! The club is currently reading The Last Lecture by Randy Pausch. I read it when it first came out and recently passed it on to a friend. Here are my answers to Dennis's questions from Part I & II of the book.

Initially Randy’s wife is opposed to his spending time on this speaking/writing project. How did you identify with this conflict between the needs of the sick person versus the needs of loved ones? To what extent do you think this conflict reflected gender orientations? How do you deal with self-fulfillment issues when you have a deadly disease?

Balancing your own needs and the needs of loved ones can be the most complicated part of this whole ordeal. I don't want to make this any harder for my family than it already is, but I know that putting my own needs first does just that sometimes. I try to listen and understand where they are coming from, but I need to make my own choices in the end.

An example of this was when I decided to go to Africa a month after having surgery to remove a tumor from my right lung. As all good mom's would, my mom worried and wanted to protect me from further harm. As a mother myself, I understood that. But the trip was very important to me and, in the end, I put my own needs and dreams first, despite the worry it was causing my mom.

Randy's decision to go ahead with his projects were the best thing for his family in the long run. Loved ones shouldn't be left with the sorrow of knowing that the person never realized their dreams.

“Kids - more than anything else - need to know their parents love them. Their parents don’t have to be alive for that to happen.” How does this theme resonate for you in dealing with illness and family? He worries that his young children will not remember him. What thoughts have you had about the legacy of memory that you might leave your children or grandchildren?

My son is an adult, but I have thought about what I can leave him so that he will continue to feel my love and presence in his life, even after I'm gone. (Adam, if you are reading his, I'm not planning for that to happen for a long time!!). With such a young family, I can understand why that was so important to Randy.

I keep a journal of letters that I've been writing to Adam since he was a baby. This blog will someday become a record of who I was and what was important to me. I've considered writing a children's book about my life for future grandchildren. I plan to call it The Story of Amma (what I want my grandchildren to call me).

Randy tells about how he was raised as a child. How did your own upbringing impact on how you handled your diagnosis and subsequent struggle with disease and treatment?

I think being an introvert has had more of an impact than my childhood has. While I do reach out to other people and am open about my illness, I have needed time to process each development on my own. An important part of that process for me has been writing about my experiences and thoughts along the way.

The second section deals with how Randy strove to achieve childhood dreams. How has that worked out for you? How did cancer affect your pursuit of your dreams?

I'm striving more to achieve adult dreams than childhood ones. It has taken me over 50 years to understand who I am and what is important to me. I do have a 'bucket list' but found that creating a list of what I had already done in my life was an even more meaningful exercise. It was confirmation to me of what a great life I've already had and it gave me hope that I will continue to have amazing experiences for a long time to come.

Being Cancer book club

My bucket list

My thoughts on Randy Pauch's book and life

My surprise

This must be my month for concerts. Last night Adam & I went to Rotterdam and had dinner. He told me he had a surprise for me but I didn't realize until we were about to go into the concert hall that we had tickets to see Neil Young. Poor ol' Neil hasn't aged well... but we had a great time. The venue website referred to him as a "Canadese rockdinosauriër" (Canadian Rock Dinosaur in English).

We were in the standing section, right up at the front. It's hard to tell from the picture, but that's Neil in the background behind me.

Neil Young rocks!

And so does Adam!

First day in the Netherlands

I was amazed at how easy it was to pass through airport security with my Fulvestrant, complete with needle & syringe. Travellers with diabetes and other illnesses probably do it all the time, but I was surprised that the security people in Ottawa, and even Heathrow, didn’t even bother to look at it. I guess I could have brought my crack cocaine after all... :-)

Adam took me out for the best sandwich I’ve ever eaten yesterday (grilled eggplant) and, in true Dutch style, we had a leisurely bike ride around The Hague. My magic blue sleeping pill helped me have a wonderful 10 hour sleep my first night, so I feel like I’ve already adjusted to the time difference.

Adam is taking me somewhere tonight but won’t tell me where – it’s a surprise!

Only one more sleep!

Remember when your mom counted down the number of "sleeps" left until Christmas or some other important event when you were a kid? Well, I still do it. Only one more sleep until I leave to visit Adam & Tara in the Netherlands!

Adam & Tara are just home from Turkey and their next adventure will be a challenging one: having me live with them for 3 weeks. Tara is in Berlin for the weekend so Adam & I will have a few days on our own before Tara has to adjust to having the dreaded mother-in-law invade her space. (I joke: she's a sweetheart who always makes me feel very welcome).

The picture is the front of the card Adam sent me for mother's day.

CT scan

Another day, another CT scan. I’ve gotten pretty used to the drill:

- Drink of large cup of water in the waiting room while reading out-of-date magazines.

- Look the other way as the nurse pokes and prods, desperately trying to find a vein to inject the IV contrast into.

- Lay face up on the table and make idle chitchat with the nice technician with the funky glasses.

- Place my arms above my head, as if I’m going to be shot out of a canon.

- Try to relax as my body moves into the machine that will take pictures of what may or may not be growing in my lungs and other organs.

- “Breathe in. Hold your breath. Breathe.” These three commands are given by the automated pre-recorded voice of CT-Charlie (not his real name).

- Be reassured when the technician tells me that the number on the screen is not my weight and that I don’t really have to pee; it just feels like it.

- Exit the machine and wait outside to make sure I don’t have a reaction.

I walk back to my car, blissfully ignorant of the results of the scan. While I know that waiting for results causes anxiety for many others, I feel good. Until the results of one of these scans tell me otherwise, I’m OK. Today is a good day.

EJ and BJ

You’ll have to trust me on this. Those two tiny, grainy people onstage are Elton John and Billy Joel. Really.As you can see, our seats for the concert were in the nosebleed section. But we had binoculars and were looking directly down at them, so it wasn't as bad as it looks. Jennifer and I sang along and had a rocking good time. I’ve always loved Elton and I may be a new fan of Billy’s after last night. They sang right through from 7:40 to 11:15 without a break, sometimes together and sometimes individually. It went way past my usual bedtime, but it was worth it!