Missing Laurie Kingston

Yes, I'm still here. But Laurie isn't. Last fall, her brain metastases spread faster than radiation could treat them. I was able to see her a time or two during treatment and while she was in hospital. But she passed away on January 8, 2018, just before I could visit her in hospice.

It is hard to know what to say about Laurie's loss. I feel it in so many ways. Laurie was a my friend. We shared some unusual commonalities. In addition to being bloggers who love needle crafts and curly-haired dogs, we have fourteen-year-olds, very bright ones. We also share metastatic breast cancer and even have the same awesome medical oncologist.

I became aware of Laurie from her blog, "not just about cancer", which introduced me to her book, "not done yet". I reached out to her online and, wonder of wonders, she reached back. Laurie was the first person with metastatic breast cancer (MBC or stage IV breast cancer) that I'd met in person. I was thrilled to meet her and intimidated by the success of her blog and book. There is a lot about Laurie that could be intimidating. She is an amazing writer. But she is, sorry was, such a down to earth person that being with her never was intimidating. She was a nice lady, a mom, a wife, a writer, a friend, and so much more.

I was so lucky to have met Laurie when I did and get a chance to develop our friendship while she was well. And she was well for a long time. She gave a great deal of hope to others with MBC, even after she was diagnosed with lepto-meningeal metastases, which are quite rare and, frankly, scary. Laurie didn't let them scare us. She simply, well it seemed simple to me, got herself into a uniquely small trial of a new therapy approach where Herceptin is introduced directly into the brain to fight these mets. It worked for a long time. Then, like most MBC treatment, it didn't work any more.

All those years that Laurie lived with metastatic breast cancer, she did more than simply live. She wrote, she knit, she raised her boys. And she advocated for change. She was a board member of the Canadian Breast Cancer Network. She was part of a lobby day for greater awareness of MBC and the need for more funding and research.

Laurie Kingston was amazing for the friend she was, but in truth, she needs to be acclaimed for her advocacy while living with this disease. It is no easy feat.


See Laurie's blog for her obituary here.

She's Gone

My mom passed away suddenly on May 13, early in the morning, before Dad and I went to visit. Her vital signs were fine at shift change. An hour later, the nurse found she was gone. I was so shocked, I thought it had to be a joke, a terrible joke. Of course it wasn't. In the end, despite those conversations about "goals of care" Mom went on her own timeline, or rather God's. She couldn't be resuscitated because the hospital staff didn't know she was dying. They think she went quick. My God, I hope so.

The last week has been a blur. I felt like I was at work again as Dad and I were in meetings all day for days planning the funeral. Then there was the flurry of preparations, like baking, making a collage and receiving visitors. Mom was a wonderful baker. In her honour, friends and I baked cookies, biscuits, loaves and squares for the visitation Monday night. My cousin flew up from Delaware -- well, you can't fly out of Delaware, but that's another story -- and my godmother, who was Mom's best friend, and her daughter, who was Mom's goddaughter, came. Mom's family wasn't able to come, but sent flowers. 

There were a lot of flowers. Beautiful arrangements and sprays. Vivian of Vivian's Flowers on Merivale Road did a terrific job, even when her supplier sent the wrong colour snapdragons and the holiday weekend made replacements impossible to get. I found myself taking pictures of the arrangements. I was compelled to. Do you know why? I felt I had to take pictures of the flowers to show mom, since she wasn't there.

There were more photos, of the casket, of Mom. Dad wanted me to take them. So I did. I am trying to do all I can to help a Dad deal with Mom's death. Oh those words are so hard to say -- "mom's death." So final.

Without Mom's family, I wasn't sure what or who to expect at the visitation the night before the funeral. We did it for us and for tradition. My friends didn't let me down. Old friends, co-workers and neighbours came, people who have helped support me in my illness. New and old neighbours of Mom and Dad also came.

The funeral was yesterday. It was harder. A smaller crowd, but a good crowd nonetheless, came to support us. Sweetie, the Bean and I did readings at the funeral Mass. I could barely read the last few lines through the tears. I thought I could do it easily enough. I was wrong. I don't think I'll do it again.

Now, like finishing cancer treatment, I need to find a "new normal," one that doesn't involve getting to the hospital every day to visit Mom. I will call Dad every day. I will helping deal with mom's will and finances. We will have to go through her clothes and effects. Then there is the question of how long he keeps the house and the job it will be to downsize, particularly to a one-room retirement home suite. So, it isn't really over. In fact, the grieving has barely begun.

A Bittersweet Mothers Day

Any Mothers Day that I am still here with the Bean is a good one. She is eleven now, and coming into the years when she really, really needs a mother. I am grateful to still be here for her. But my own mom's difficult state makes the day bittersweet.

Last night I was instructed not to get out of bed in the morning but to just call, or ring my bell. Sure enough, Sweetie and the Bean made me breakfast in bed. This year, it was more sophisticated than most. She made me a cheese and tomato omelet. Plus juice and tea. There must be tea. I think our dearest memories of our mothers involve tea. There were presents too. A gift certificate for a pen I ogled recently. A writer needs a good solid pen, not the one I liberated from the hotel last weekend. And a Pandora charm. Not the bracelet I tried on or one of the hundred charms I had marked off in the catalogue, but the one the Bean chose -- because Mommy likes pearls. It is beautiful. (When we returned from Montreal last weekend, she and I spent an hour combing through my jewellery box and trying on dresses. We spent a lot of time on the pearls. My little Bean pumped me full of confidence in my appearance, something cancer has tried to take from me.)

I have some time to write now while they walk the dog. I am mentally preparing for the trip to the hospital. Mom has been moved out of ICU to the Acute Monitoring Area so they can continue to watch her oxygen desaturations. She is in a private room due to an antibiotic-resistant infection. We appreciate the privacy, particularly as my brothers were here yesterday and the room was crowded. 

She still isn't able to communicate with us. We can only guess at her level of consciousness. And yet we had to have another conversation last night about our "goals for care." What happens next time she has an infection and goes septic? Do we treat with antibiotics? Do we treat her low blood pressure, requiring an ICU admission? Do we ventilate her if necessary? None of us ever imagined she would be brain damaged and paralyzed. What would she say she wants? To slip away peacefully or to die trying? Do we use medical interventions because they are available? Must we? Should we? Her last words to us were to request all possible treatment. "I want to live." Does she still? And who am I to decide? 

Have you talked to your parents about their wishes? Have you considered your own? Have you considered all the options? Or put it in practical terms? Have you decided when your quality of life determines its value?

Thanks to cancer, my brother and sister-in-law and my Sweetie and I have had to ask ourselves these questions. We know the day is likely to come when further treatment will not buy us another day to hug our children -- which is all I want in life, I suppose. I haven't answered all the questions yet. For today, I will go to the hospital today, hug my Mom and drink a cup of tea. And be grateful she is still here.

Someone Took the Monster Out of the Cupboard

I have a monster in the cupboard. We don't need to look at him every day, so we keep him in the cupboard. My husband and I know he's there. We take him out from time to time, but not often; he's so scary. I thought my daughter knew he was there. She didn't. She didn't know we had a monster.

The monster is the fact that breast cancer kills.

My daughter, the Bean, was eight years old when I was diagnosed with Stage IV breast cancer. The day we got the biopsy results, we told her.  It was a "Hockey Fights Cancer" game night for our Ottawa Senators. We thought that might help. Before the game, she got into her jammies and she and I sat in the rocking chair, my Sweetie on the bed. After we told her, she started to cry. Why, we asked? She thought everyone with cancer dies. I told her that wasn't true. I told her that there was no cure for my cancer, but there is treatment. I told her that our beloved family doctor has not lost a single breast cancer patient. I told her the truth. But she didn't understand it all.

Last night at bedtime, as we chatted about otherwise happy things, she compared my sister-in-law's rare cancer to breast cancer and said something along the line that no one dies from breast cancer. I winced. Without a doubt, I will never win a poker game. My face shows too much. So, I winced and said that sometimes people die of breast cancer. I didn't elaborate. I just told her the truth.

To her credit, impressive for a ten year old with a history of anxiety problems, she said, "that's enough about that" and changed the subject. Still, the monster was out of the cupboard for a moment.

My Sweetie wasn't happy about this exchange. I want to preserve her childhood, her innocence, as much as he does. But in the moment she said what she did, I was afraid that some day, when I take a turn for the worse, she would feel like I had been lying to her about my ability to fight this disease. It is ugly, but it is the truth: breast cancer will kill me. I don't want her to confuse my attitude with invincibility.

I am quite happy to put the monster back in the cupboard and leave him there as long as possible. I don't like the monster. Not one bit. But she is my girl, and I had to tell her the truth.

Can I ask, moms with mets and tweens, how much do your children understand about Stage IV cancer. Do you keep your monster in the cupboard or on a shelf? How do you balance honesty and innocence?

The Ottawa Regional Cancer Foundation runs the Maplesoft Centre here in town, not far from the hospital where I get my care. Maplesoft offers the Wonders and Worries series for children aged five to twelve to help them cope with a cancer diagnosis to their parent or grandparent. We've told the Bean about the program, but she says she isn't interested. If your child needs help, in the Ottawa area, please contact the Maplesoft Centre at 613.247.3527 or info@ottawacancer.ca.

You may also want to read the new book, "My Parent Has Cancer and It Really Sucks" by father and daughter team Marc and Maya Silver. I was fortunate enough to win this book from Nancy Stordahl at Nancy's Point. The book offers a terrific compilation of practical advice, much of it from teens who have lived with their parent's cancer diagnosis or even death. The book is written for teens. The Bean isn't ready for it yet, in terms of maturity rather than reading ability. Nevertheless, the book has given me an idea or two to open up the conversation about cancer. After my diagnosis, she had so many questions for me about cancer and the treatment I was getting. She, like her parents, got the hang of it after about six months. Now she doesn't really want to talk about it. I don't know if that's good or bad. I certainly don't want to make her life "all cancer, all the time." But neither do I want her to live completely in denial. I'm a big fan of denial, don't get me wrong, but it's a matter of proportion. That's why the monster lives in the cupboard, but we don't pretend he's moved out.

Reflections on Recent Deaths

I was shocked today to learn that Roger Ebert had passed away only days after announcing he was taking a "leave of presence" due to the return of his cancer. He had so many plans for this leave and now he is gone. Just weeks ago, Donna Peach, a breast cancer blogger, passed away after what seemed to be a recurrence of shingles. Through the Twitter feed I was informed today of another passing, this time of the mother of young children.

Given my condition, I can't help but be touched by these deaths. There but for the grace of God go I. Reflections fill my head and spill out my fingertips to my blog. I need to write these things publicly. I need to be held to account. Because I don't want to slip away before I do the things I need to do.

WARNING: this post is not for the faint of heart. Please stop now if my honesty may disturb you.

First, let me say how grateful I am to have lived eighteen months since my diagnosis of Stage IV breast cancer. You don't want to know what the median survival is. Google it if you have to, but you don't want to know. My doctor talks of treating me for decades and decades. I hope so. I know he can't guarantee me that much time.

Whatever time I have, I want to write more, sit less. I don't want this sore neck that comes from too much time sprawled on the couch. Now that spring is approaching, or at least the snowbanks are receding, I want to drag my walker outside and walk, damnit! I want to smell the fresh air and feel the sun. It is time to listen to the birds call my name. I'm not confident that I can walk 5km like I did last fall. My hip appears to be healing. Walking helps it heal. What I need to do is clear.

I also want to use up my craft stash. I can't bear the thought of my Sweetheart having to sort through it without me. It would be best that he not know how many things I plan to make a purse out of, on top of all the other purses I have. There is so much wool. So many beads. I want to make a rosary for my niece before her baptism. I'm proud to be her godmother!

Organizing my paper and electronic genealogy files is another priority. Genealogy isn't a project you finish. Nevertheless, there is so much I should do, like improving my source citations and adding photos and then posting my family tree to the public. I am late in responding to a couple of people eager to share research. Cancerland has been a busy place the last few months. So many appointments. Gee, why don't I make myself an appointment to visit the National Archives again with Sweetie? I should schedule time to tackle my hobbies.

And then there is the pile of stuff at my office. I've been trying to get back there since January to sort through my effects and my working papers. I appreciate my coworkers packing up my office to clear it for my replacement, but there's so much for me yet to do. I've been thinking of holding a garage sale for the candy dishes, mugs, vases and toys I had at the office. There's a way to raise money for "the cure."

I also want to prepare for, shall we say, the worst case scenario. I need to write messages for the Bean in case I'm not here for her the day her heart is broken or she runs up her credit card. So many things I have to say. She calls them Mommy's lectures now. She is turning ten. Another few years and she won't hear a word I say. But one day she will regret that. Do I write or do I videotape my messages to her? Maybe both. It won't be a small or easy task.

There are practical preparations too. I take care of the family finances. We have been meeting with our financial advisor and most of our retirement and education savings, insurance and mortgage are with him. I think it is time to get rid of my bank account in favour of joint accounts with my Sweetheart, so he has easier access to all our assets when I am incapacitated or gone.

I have been reading books about healing, meditation and happiness. I would like to practice meditation. In fact, my physiotherapy routine is primarily breathing and relaxation. I can believe that meditation may help shrink my tumours, shall we say by helping my medical treatment to be as effective as possible. At the very least, meditation would improve my quality of life. Hmm, quality and perhaps quantity of life?

I don't know if you can understand this if you don't have a terminal illness, but one ache, one bad day can be terrifying. The bad days can snowball quickly, as they did for Donna Peach and Roger Ebert. I feel very vulnerable, naked and unarmed. Those who knew me before my diagnosis know I'm a planner. Very deadline oriented. When it came to my work, I could do miracles with the right team. I told my boss today I should have saved myself a miracle. We will see. Maybe I did.

The thing is that we don't know. Unlike my work projects, I don't know what my deadline is. Don't know how much time I have left to clean my closets, raise my girl and teach Sweetie how to pay the bills online. Truth be told, you don't know how much time you have either. You probably don't want to think about it though. I can't avoid it.

And that brings me to the thought I want to leave you with: peace. I was raised a Roman Catholic, though I'm not a practicing one. Pope Francis intrigues me and so I've been following several Vatican Twitter feeds. His words today about the "joyful wonder" of being a Christian really touched me. In my opinion this peace can be sought and received from whatever you believe is a Supreme Being or life force. Whatever your faith, please consider these words. May you find peace in them, as I do:

"Of course we cannot live forever in [a state of] wonder. No, we really cannot. But it is the beginning. Then, this astonishment leaves an impression in the soul and spiritual consolation. It is the consolation of those who have encountered Jesus Christ”.

"First wonder, then spiritual consolation and finally, the last step: peace. Even in the most painful tests, a Christian never loses the peace and presence of Jesus. With a little 'courage' we can pray: 'Lord, grant me this grace which is the hallmark of our encounter with you: spiritual consolation and peace'. A peace that we cannot lose because it is ours, it is the Lord's true peace that cannot be bought or sold. It is a gift from God. This is why we ask for the grace of spiritual consolation and peace of mind, that starts with this joyful wonder of our encounter with Jesus Christ. So be it. "