Chronicle of a Stem Cell Transplant (and on through to the other side)

Monday, January 13, 2014

Kirsten has been a strong and continuing presence in our lives and, as her mother, I feel compelled to add something to the abrupt ending of her blog.  I feel fairly sure that she would not mind….

I have also asked Ian if he would include here the latest entry posted on his own blog The Day Was.

Writing about or speaking of Kirsten in the past tense is difficult. It is close to impossible for me to believe that my daughter is no longer here on earth somewhere.  Intellectually, I accept what has happened, but my heart feels differently.  Sometimes, I indulge myself by imagining that the past three years have been a long and terrible dream, and that I'll wake up and everything will be right again and she will be with us.

Kirsten was born on Christmas Eve in 1973.  I hadn't had much experience with babies and, even though she weighed close to eight pounds, she seemed alarmingly tiny to me.  I would wake up a dozen times a night to make sure she was still safe in her little bassinette in the corner of the bedroom.

Kirsten was an exceptionally pleasant and placid baby, which was a very good thing because I was not a relaxed mother.  I needed to consult my baby-care books at every turn of events and had to call in a friend to assist with her first bath.

Toddlerhood was a shock to me.  Kirsten was extremely aware of what she wanted out of life by the time she was two, and I have a photo of her stamping her foot, with her ponytail swinging, which makes me smile because I remember how intimidated I was by the absolute determination of one so small.

Kirsten was, initially, an enthusiastic elementary school student, but her interest had turned to boredom by the time she reached high school.  She didn't know which direction to take when she graduated, but, through a somewhat complex series of events, she ended up at Montroyal College in Calgary, and that remarkable place turned her academic life around.  Six years, two universities, and two journalism degrees later, she was the recipient of a CBC internship scholarship and, for a while, she was on top of the world.  She had met Ian, the man she was going to marry, and she knew what she wanted to do with her life. We finally relaxed, thinking her future would hold everything we wanted for her.

Just one year after her marriage, Kirsten was diagnosed with Hodgkin's Lymphoma, a form of cancer that, for 85% of those diagnosed, can be completely cured.  It became evident within the first year that Kirsten was not going to be so fortunate.  For the next 5 years, through a stem-cell transplant, numerous clinical trials, trips for trials and consultations to Montreal, Houston, and Seattle, she persevered and lived her life in a way that I (and everyone else) would never have thought possible, considering the situation.  Sometimes she felt well, but more often she was experiencing the side effects of chemotherapy, radiation, and trial drugs.  Through it all, her remarkable sense of humour remained intact and she kept us all positive and hopeful.   It was impossible to believe that she wouldn't survive.

During a period when she was feeling energetic despite the ongoing treatments, Kirsten travelled to Connecticut and participated in a workshop on transformational writing.  When she returned, she hoped to find a way to share this way to use writing for emotional and physical healing.  Coincidentally, she attended a meeting, sponsored by the Callanish Society, for young adults experiencing cancer. (Callanish is comprised of a group of dedicated people who facilitate week-long retreats for people experiencing cancer.  They also provide support for the families and sponsor inspiring, life-affirming activities that can make an incalculable difference under these difficult circumstances.)

That first meeting Kirsten attended was the beginning of a relationship with the people of Callanish that profoundly contributed to the strength she was able to bring to her experience with lymphoma.  Kirsten and the society's director, Janie Brown, co-facilitated writing groups that provided inspiration to many who were learning how to live with cancer.  The writing program continues, and we are comforted and proud that Kirsten was able to leave this legacy.

Kirsten was so willing, and so eminently able, to make a positive difference in the world and there are no explanations, beliefs, philosophies, or platitudes that can adequately explain or excuse why this had to happen.  All that we can do is appreciate the thirty-seven years that we did share with her. The essence of her beautiful mind and her compassionate heart will always be with us. 

Saturday, February 12, 2011

A gathering of Kirsten's family and friends

We invite you to be with us on Sunday morning at 10:00, February 20. As Kirsten requested, we will gather in Cates Park in North Vancouver to be together and with her. Kirsten would like people to wear their favorite colours, bring a flower with them and, if you like, a memory, story, or poem to share. Children and dogs are welcome. Please email with any questions. Thank you.

Tuesday, February 08, 2011

Kirsten was with us from December 24, 1973 until February 7, 2011. 

She will be the light of our lives forever.

Saturday, February 05, 2011

Kirsten is not doing well

Kirsten has asked us to send this message if she was not well enough to do so. She would like those who can to light a candle for her. She takes comfort in the thought of this.

Thank you from Kirsten and her family

Tuesday, January 04, 2011

End of 2010

Hello everyone.

First let me apologize for being MIA for so long and causing many of you to worry.  I am OK, but December was a hellish month.

The problem we are facing now is that the Revlemid seems to be holding the Hodgkins at bay, but it is driving my blood counts down each cycle, so much so that I wound up in the hospital last week.

At about 10pm, Ian was tipped off by my incoherence in answering some of his questions while I was having a little melt-down. We took my temperature and I did have a fever so it was decided I would go to VGH Emergency, where they were concerned I might have an infection of some sort.

It turns out my hemoglobin had dropped to 44, so I received 4 units over the next day while they ran a lot of other tests.  While the care was more or less exemplary, I found myself becoming highly stressed in the hospital and struggle with not viewing it as a traumatic experience.

I have felt a lot of anxiety lately.  I am unsure and upset with the compromised state of my body.  I am struggling to find purpose and meaning, and how to regain some sense of normalcy in my life.  But, I know getting on here is a good start as I just haven't had the energy or inclination until now. Thank you, dear Emily.  Your visit tonight couldn't have been more timely to give me the push I need.

Love and thanks, too, to all of you who have sent, and continue to send, your messages of support and keep me in the loop with your updates despite my lack of reciprocating. I look so forward to eventually being able to remedy that.

Sunday, November 28, 2010

Just a Quick Post to Say

...I am still not feeling great, but "they" say I am making improvements, so I guess I will go with that.  I am still in bed a lot of the time, have lost a lot of weight, and am having to regain my muscles/strength to walk without worrying everyone.

Since I last wrote, I've started a new chemo, Revlamid/Lenolinomide, which is just one pill taken orally for 21 days, then 7 off. I've just finished the 21 days and haven't had any major side effects, but because it is only one capsule daily, it will take a few weeks to see if it is having any effect or if it is going to give me any trouble.

My skin is still uncomfortable due, now, to excessive dryness, so it burns when I stretch.  What I wouldn't give to be comfortable in my own skin again.  I've had more than a few cries these past few weeks. I just want to be a able to do at least some of the things I used to take for granted, like take Finn for a walk.

Monday, November 01, 2010

Well, After Last Time's Rather Heavy Post...

I thought I'd do a light and easy hair update. Besides, who can stay sad when George Michael is wiggling his butt in your face.

But I digress...

Now, where has all my hair gone?

South, apparently...

It seems just one dose of the Vinblastine caused it to start falling out, and, like last time, it also changed the texture. It seemed really waxy and hard to brush, but it was when I woke with a Marleyesque-dreaded unicorn horn that I knew I had to take matters into my own hands, hence the cut with my Ikea scissors.

A little Pat Benatar, but not bad, I thought. Until...

My TCM practitioner, yes, TCM practitioner, of all people, informed me as I was lying on her table that...I had "a tail."

Of hair? I implored in horror.

Yes, about this long...

Well, stirrup my pants and put me in an Wham video.

Who could know such a thing when one cannot see the back of one's head? I thought that's what friends and family were for - to tell you when you have broccoli in your teeth or when your fly is undone. Or, say, when you are sporting an 80s rat tail some twenty-five years after the fact. 

I thought you people were supposed to be looking out for me. Meanwhile, I'm strutting around town (ok, maybe just the bedroom) all week with a tail that was apparently long enough to braid. Yes (be still my beating heart), braid.

But I'll get you, my pretties.

There's nothing a little El Debarge for Christmas can't fix.

(and thanks, Jenn, for tidying me up)