Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.
Leonard Cohen, from Anthem
_____________________________________________
Immediately after making an important presentation to a parliamentary committee and just as I was about to rejoin my staff at a retreat on June 16, 2009, I received the phone call. The earlier suspicion that I had lymphoma was confirmed, specifically mantle cell lymphoma (MCL).
I am a husband, father of a teenage son and daughter, brother, Canadian government executive with range of international and domestic experience, who likes reading, film, music, walking, cycling, skating, being with family and friends.
I was depressed over the next few weeks. Uncertainty shifted from ‘what do I have?’ to ‘what does it mean?’. Learning about MCL on the web made things worse, my prospects appeared bleak, confronting me with my mortality. I had to deepen the level of discussions with family and friends while broadening the circle to include staff and colleagues to let them know my situation. Sharing the news did not become easier with the repeated telling.
My priority was to press for an early appointment with a specialist. Thanks to the help of my family doctor I managed to meet with the specialist on July 3rd. He quickly put me at ease on the big question; the prognosis was good for someone of my general good health and young age (51), recommended the Hyper CVAD protocol along with autologous stem cell transplant, and scheduled me to begin treatment later that day.
One of the things that I grappled with throughout the diagnostic process was, beyond immediate family and friends, who needed to know, when and how much to share? In the very practical question of being absent from work for six months at least, as well as deeper discussions with family and friends, I began to realize that while the lymphoma was about me, the impact was upon others, others that I related with, and relied on me, on a daily basis. It was about me and the group, not just me as the individual.
Given my need for support of family, friends and colleagues, my mind turned to what kind of support they in turn needed from me. They felt concerned, some felt awkward, some had experience in dealing with cancer and some did not.
My immediate management team told me to tell more people that they needed to hear it from me. Out of this came my idea of weekly updates, initially to my management team, my boss and close colleagues, and then gradually broadening as more people and colleagues both inside and outside my workplace expressed personal interest.
The updates were weekly because a week is granular enough to provide both sufficient detail and sense of the ‘journey’, as well as fitting the normal work habits of weekly planning and reporting (and our family school planning!). This also forced me to reflect a bit on the week that was in terms of what was important to share and impart rather than endless Tweets on this or that injection. Another aspect was that weekly updates seemed manageable in terms of my expected energy levels.
I keep a daily personal journal to capture both the medical and personal things going on during this journey, and draw from that in my weekly updates.
Thus, this blog started out as weekly updates. As the circle expanded, and my personal comfort with sharing increased, I wanted to see if blogging could assist or help others on similar or comparable journeys. I was curious to see how a potentially broader readership affects how I think and how I write my weekly updates, without losing the personal aspect of my relationship with my current readers.
I turned this blog and reflections into my ebook, Living with Cancer: A Journey, to capture my first three years of diagnosis, treatment, recovery, relapse, treatment, and again recovery. A short TV interview with me can be found here.
I hope that both this blog and my daily journal will help me make sense of what I am experiencing, at both the deep and practical level, during the treatment phase of the journey, as well as allow me to share this understanding with others.
Hopefully, you find these posts of interest and helpful to you and others that you may share them with, and I welcome comment and discussion.
Andrew Griffith
***
A year and a half after treatment, I find myself in relapse, and starting yet another cycle in March 2011. So back to regular blogging and hope that this continues to be helpful to people either with cancer or helping family or friends undertake their own cancer journeys.
I’ve just finished reading your blog because, well, you read mine. I’m impressed at how you’ve stayed focused on the positives and not lingered too long on the dark side of this whole business. And while I don’t envy your treatment (sounds like I had it a little easier), I do envy the amount of reading you’ve got done.
Best wishes for the rest of your treatment.
Dear Andrew – I have been worrying about you. Heard some time ago that you were away on long absence for health reasons and I did not want to intrude your privacy. This blog is very brave on your part. Your honesty and balanced way of reporting your experiences and feelings is very touching and reminds us all of how vulnerable we are to being personally touched by serious illness. I look forward to continuing to read about your journey and – especially – your recovery. With much warmth, Danielle
Hi Danielle, thanks for your kind words and encouragement for both the journey and the blog. All the best, Andrew
Andrew – Learned about your blog via Umit and took a bit of time over my holiday to read parts of it – I am so impressed by your positive spirit and how brave you are at sharing your feelings, fears and accomplishments. I love the photo you have chosen – it gives a beautiful visual to experience a true reflection and makes it seem as though we are simply having a quiet talk together. May you continue to grow stronger and may you receive many positive thoughts to support you in your journey. Caroline
Caroline,
Thanks for your kind and supportive message, and your encouragement on the blog. Andrew
Hi Andrew – Thank you for posting this blog – you are a poignant yet unsentimental writer and your posts have a universalist touch on many life’s experiences with illness and tribulation….That you have taken the time to do this is a gift to us all. (That is one of my favourite Cohen lines – his music is as good as prayer.) Looking forward to reading your upcoming posts. -Eva
Eva,
Thanks for your encouragement – it makes a difference. Agree with you on Cohen, there is something very spiritual in his words and music. I always find it challenging to find some other music appropriate for each post – but an enjoyable challenge. Andrew
Hi Andrew,
Wow, awesome blog my friend. I wish I had seen yours before I set mine up. I find it very interesting that with the same cancer, that the treatments are so different. I am sorry it took me awhile to respond but my 2nd oldest daughter almost died from h1n1 a few weeks ago. She is now firmly on the road to recovery but the docs say it could take her another month to learn how to walk again. It is not an experience any parent should go through.
Please keep in touch. I would very much like to know how things proceed for you.
Keep strong!
John
Hi John,
Thanks for your encouragement. It is interesting how the treatments change, we checked with a number of different doctors to ensure this was the right track for me. So far so good, but these last few weeks are going to be a challenge. Sorry to hear about your daughter – given where I was in the treatment cycle, we all got the vaccine as I m high risk and therefore so are my family members who are in contact with me. Pleased that she is getting better – some of our friends also had kids with H1N1 and they are all better now, but it was particularly strong.
Will keep in touch and thanks again,
Andrew
Andrew,
I was so sorry when the news of your health struggles reached me.
I send to you positive thoughts. Know that even those of us who are years in your past, think of you, and now keep you in our prayers. My thoughts are with you all. I know that together you are doing a great job navigating the sometimes rocky road.
Take good care.
Alyssa Bissonnette
Thanks Alyssa, good to hear from you and I truly appreciate your interest and support. Hope life is treating you and your family well. At the last stage now, so almost done. Best regards, Andrew
Andrew,
I will be keeping an eye on your site for updates on how thing are going.
Our family faced cancer (my mom) when my brother and I were similar ages to your children. I remember it well. It was difficult (doesn’t quite cover it does it?) but ultimately made us stronger as a family.
Our little family of three is well (Noa is 20 months now). Appreciate your interest as well! Keep well. May the spirit of the season boost your strength even a little!
Best wishes and thoughts,
Alyssa
Hi Andrew,
I have been thinking about you lately, and am glad to see that you were feeling better for the holidays. Thank you so much for sharing so much of your life with us through your blog.
I have something very modest to share with you. I see that you have been reading quite a bit, and am sending you my our bookclub list in case you want to delve into some fiction. For what it is worth, I have highlighted my favourites with three stars.
All the best to you and your family in the new year. May you have much good health, happiness, and love.
Take care,
Teresa
*******************************************
BookClub Selections (January 1996 – December 2009)
Chapter 1
How Late It Was How Late, James Kelman
The Holder of the World, Bharati Mukerjee
The Bluest Eye, Tony Morrison
Eva Luna, Isabel Allende
Paddy Clarke Ha Ha Ha, Roddy Doyle
Independence Day, Richard Ford***
Angels and Insects, A.S. Byatt
Immortality, Milan Kundera
Chapter 2
If on a Winter’s Night a Traveler, Italo Calvino***
The Risk Pool, Richard Russo
The Book of Secrets, M.G. Vasanji
Homesick, Guy Vanderhague
Mr. Sandman, Barbara Gowdy
The Crying of Lot 49, Thomas Pynchon***
Instruments of Darkness, Nancy Huston
Chapter 3
The Unconsoled, Kazua Ishiguro
A Debt to Pleasure, John Lancaster
A Cure for Death by Lightning, Gayle Anderson Dargets
Nights Below Station Street, David Adams Richards
High Fidelity, Nick Hornby
All the Pretty Horses, Cormac McCarthy
Autobiography of My Mother, Jamaica Kincaid
Good Hair, Benilde Little (worst book ever)
Two Murders in my Double Life, Josef Skvorecky
Chapter 4
Discovery of Strangers, Rudy Wiebe
A Widow for One Year, John Irving
The Emigrants, W.G. Sebald
Blindness, Jose Saramago***
Regeneration, Pat Barker Kiss of the Fur Queen, Tomson Highway
The Life and Times of Michael K, J.M. Coetzee
Chapter 5
Pale Fire, Vladimir Nabokov***
Their Eyes Were Watching God, Zora Neale Hurston
Ali and Nino, Kurban Said
The Projectionist, Michael Helm
A Star Called Henry, Roddy Doyle
City of God, E.L. Doctorow
Joshua Then and Now, Mordecai Richler
No Great Mischief, Alistair McLeod***
Disobedience, Jane Hamilton
Chapter 6
Libra, Don Delilo
Soul Moutain, Gao Xingjian
White Teeth, Zadie Smith
Happiness, Will Ferguson
The Reader, Bernard Schlink
The Life of Pi, Yann Martel
Dreams of My Russian Summer, Andrei Makine
Atonement, Ian McEwan
Chapter 7
Family Matters, Rohinton Mistry
The Piano Tuner, Daniel Mason
The Polished Hoe, Austin Clarke
Clara Callan, Richard Wright
Pattern Recognition, William Gibson
My Name is Red, Orhan Pamuk
Taras Bulba, Nicolai Gogol
Hunger, Knut Hamsen
Chapter 8
The Way the Crow Flies, Anne-Marie MacDonald
To the Lighthouse, Virginia Woolfe***
The Curious Incident of the Dog at Midnight, Mark Hadden
The Once and Future King, T.H. White
Flaubert’s Parrot, Julian Barnes
Deafening, Frances Itani
The Time Traveller’s Wife, Audrey Niffereger
Small Island, Andrea Levy
The Sea, John Banville***
Chapter 9
A Short History of Tractors, Marina Lewycka
Nostromo, Joseph Conrad
Nausea, Jean-Paul Sartre
Lullabies for Little Criminals, Heather O’Neill
Divisadero, Michael Ondaatje
Rockbound, Frank Parker Day
The Road, Cormac McCarthy***
Chapter 10
Half of a Yellow Sun, Chimamanda Ngozi Adichie
Seeing, Jose Saramago
King Leary, Paul Quarrington
The Sheltering Sky, Paul Bowles
Night Train to Lisbon, Pascal Mercier
Brief Wondrous Life of Oscar Wao, Junot Diaz
Chapter 10
The Cellist of Sarajevo, Steven Galloway
The Book of Negroes, Lawrence Hill
The Yiddish Policeman’s Union, Michael Chabon
…to be continued
Hi Teresa and Happy New Year. Thanks for the reading list, it certainly gives me some more ideas and there are some books there that I had heard about but had not read. Andrew
I am getting more systematic in my reading so have started a list of books that I should read and added your favourites!
Andrew
Hello Andrew,
Just wanted to convey my thoughts. I was so glad to hear in your recent posts that you are feeling well and being rewarded further with positive medical results. I have been keeping my eye on the site to stay abreast of how you are doing. It is always a pleasure to see how well things are progressing and walk away with a bit of your strong spirit and outlook. Continue to feel well and build your strength. You are in my thoughts.
Alyssa Bissonnette
Andrew,
We were most distressed to learn about your difficult journey. But it is heartening to note in your blog the same bright, strong spirit we loved in you way back in Bs.As. days!
We have been accompanying our daughter, Marisa, in a somewhat similar situation, 2nd round of L.M. Sarcoma, and find we are all being re-shaped by her spiritual insights and courage.
Our thoughts and prayers reach out to you.
Fuertes abrazos de Jose luis and Adelle
Dear Adele and José,
Thanks for your kind note. So sorry to hear about Marisa but it sounds like she, with the help and love of the family, has managed to find the necessary space and calm to not just ‘get through it’ but benefit from the insights that it gives. Although my analytical side keeps on telling me there must be easier ‘learning experiences’ than these particular journeys that are thrust our way. Fuertes abrazos, Andrew
Dear José and Adelle,
Kate let me know that Marisa passed away after her long and hard struggle with her cancer. My thoughts are with you both, along with Kate, Anna and Marisa’s kids.
While I have some sense of how hard it is for parents losing a child, as my parents lost Ian, I cannot imagine the pain you both must have gone through seeing Marisa suffered, even if she did so with great courage and insight.
She was blessed by having such supportive parents, sisters and children.
My thoughts are with you all.
Best wishes, much love,
Andrew
P.S. No need to reply.
I am interested to learn about your experience with the Autologous stem cell transplant. How can i find that on your blog?
The best way is to look at the September 2009 entries (when harvesting took place) and November – January when the transplant took place and after effects. Let me know if you have any specific questions.
Dearest Andrew,
I recently heard of your disease and discovered your blog. I read and reread all of your thoughts enjoying the force of your thoughts and thinking at the same time of our jounger days spent together in argentina. I am shoked and surprised and I am sad.
I listened to the song of Mercedes “Gracias a la vida” and I reflected at the same time about my and our life and about my and our lifetime.
I myself left “the too much hassle life” and backed out to the german speaking part of Italy, called South Tyrol/Alto Adige in the Alps. I have been living there since four years with my partner Peter and my dog Krümel. I go for long walks almost every day with my dog. I also discovered walking as a very healthy and wise way of self-absorption. I learned a lot and I am still learning. Life became modest and I became more humble.
I am very gratefull to have known you Andrew and I often think back of you as a very open minded and warm person. In Argentina life was very easy and we did not reflect about it. I am surprised about the profundity of your train of thoughts. Its good for my heart.
Love Birgit
Dear Birgit,
Thanks for your kind and thoughtful letter. I am happy that you have found a good space to be in – the ‘hassle life’ can be exciting but as I am ‘encouraged’ to slow down again given my lymphoma, the savouring of the moment and the quiet is ultimately deeper and more rewarding. We always continue to learn, and that is part of the joy of life.
I have also spent some time going back over the years. Your comment about the easiness and the taking for granted are all too true. It is part of enjoying our youth; what is interesting is sharing my blog with my kids to help them, when the time comes, to understand what may lie ahead, and hopefully enjoy their youth as they should, while having a deeper awareness of what a special time it is.
I debated whether putting Gracias a la vida but picked Canto La Cigarra, as the latter gives me more strength as I prepare for the next round of treatment. But both are powerful and life affirming.
Thank you again – I am also very grateful for having known you.
Andrew
Bonjour Andrew,
C’est avec grande tristesse que j’ai appris aujourd’hui ton départ du bureau. Bien que nous ne soyons pas des intimes, je me permet te t’offrir sur ce blog mon encouragement dans le combat que tu mènes contre le cancer.
Des mots d’encouragement sincères, d’une part, parce que j’ai apprécié ton leadership durant ton passage dans notre modeste programme, et j’ai beaucoup apprécié l’écoute et le respect que tu nous accordais à nous qui sommes souvent bien loin des officines de la capitale nationale.
Mais surtout des mots d’encouragement teintés de confiance, parce que la science et le savoir des oncologues arrivent à véritablement faire une différence. Ma famille et moi avons pu en bénéficier puisqu’en 2004, mon père obtenait un diagnostique de cancer dégénérescent qui ne lui offrait aucune perspective de guérison, et tout au plus 18 mois d’espérance de vie. Sa bonne réponse aux traitements, les progrès de la chimiothérapie et des autres médicaments, l’accès aux ressources sanguines, ont tous contribué à lui donner plutôt 7 années dont nous avons su tirer profit avant qu’il ne nous quitte au mois de juillet dernier.
A few weeks ago, I have commited myself to join my brother’s team on the Montreal Jewish cycle ride against cancer, in memoriam of my father’s courageous fight against the disease. Since anouncing our team and launching our blogs, we have had several friends and relatives telling us about their own friends and relatives being confronted with a cancer. What has begun as a personnal challenge to honour my father has then evolved in a ride through which I whish to carry the hope and the courage of all those, in my personnal network, who are currently fighting a cancer, or supporting a loved one who is doing so. On July 9th, when I’ll hit the road for a 250 KM journey to Quebec city, I will carry a thought for you as well.
Take care, I whish you the best during your treatments and ever after.
Martin 🙂
Merci Martin pour tes mots si gentils et chaleureux. Et merci aussi d’avoir partagé l’histoire de ton père qui m’encourage, tant au point de vue de réussite des medecins qu’au point de vue de temps qu’il a pu passé avec sa famille. Envoi-moi le lien a ton équipe de vélo car ça me fait plaisir de contribuer.
Amitiés, Andrew
Andrew – Sending you positive thoughts and lots of hugs every time I hear your voice at those endless transition committee meetings. Build your strength, love your family and savour your friendships … you are and continue to be such an inspiration to so many. Caroline
Hello Andrew,
Am delighted to hear that this current round of treatment is working well and that your prospects are improving daily. I think of you often, even as I check in with my sister who, six-months post treatment, has been given the all-clear and thumbs up.
I know that you have been following, before and after the Royal Wedding fuss, the election results and commentary. I have written a little poem in limerick form that I thought I’d share with you in the hope that it brings a smile to your face and a chuckle or two. Seems to have worked in some of my other circles. I don’t know what it is, but I seem to be able to deal better with the ups and downs of whatever is going on through poetry these days.
Take care.
Mary
Election 2011
There was a young man from Cal-gary
Most Easterners found him too scary
He fiddled and diddled and tiddily-widled
Until his opponents were nary.
Coalition was not for a Liberal thought
Such a rosy proposal sought
So Iggy rejected with dogged persistence
When nought should have turned into ought.
Jumpin Jack Flash lept up to the premicis
To unseat the Conservative menacis
Flailing his cane he leaned too far back
Decaping his separatist nemesis.
And so on that day, a country so Green
Fell into the arms of Harper’s team
Four years can pass fast, but oh how it lasts
When you’re splitting your pants at the seam.
It is very helpful!
Dear Andrew,
I stumbled across your blog after searching the word ‘mortality’. I give you my kindest regards and wishes mate.
Have you read Ernest Becker’s ‘The Denial of Death’, it’s a masterpiece. Take care of yourself.
Sincerely,
Wa’el Esmair
Thanks Wa’el, no I haven’t read Becker’s book – will add to my list. Arthur Frank’s At the Will of the Body is a book that I like.
Thanks for your comment and sharing.
Andrew
Your blog speaks of immense research and knowledge. I hope that you are in remission now. Thank you for sharing your knowledge with the world. I love your blog
Thank you for the kind words. Not sure whether I am technically in remission or not but it certainly feels so!
I can’t believe that it has taken me so long to thoroughly comb through you blog! It is a treasure for me to read and I will be checking and checking back for updates on your journey. You are a brave and knowledgeable person. I’m truly and sincerely glad to have the chance to hear your story.
Thoughts and strength,
-Katie
Dear Andrew, in appreciation for your support, advice and friendship I have nominated you for the Best Moments Award. I hope you will accept this award. http://tersiaburger.wordpress.com/wp-admin/post.php?post=2595&action=edit&message=6&postpost=v2
Thanks Tersia, it is very kind of you to nominate me.
As you know, I have decided to wind down my blog (and cancer layer of my identity) so better to nominate someone else currently active.
Best wishes and thanks for all your support.
Andrew
I admire your transparency and courage. Cancer certainly is a journey and it’s not an easy path. Knowing others have gone down it ahead of you gives encouragement! http://justinrambles.wordpress.com/
I have not read most of what is in the blog so what I am writing is partially blind. I do online mining for treatments that have shown efficacy for friends that are currently lymphoma patients. Back in 2004, I learned about Asimina triloba and its 50 active ingredients. I made it public to my friends. One of them decided to try it. To this day, that is all that he uses. If he stops, his nodes resurge within a month’s time. I became very enthusiastic when I learned about his ability to keep the illness in check by simply taking 4 capsules a day. Recall, the use of the botanical started ten years ago. Last year, I had the opportunity to speak to the pharmacognosist that developed the product. He discussed the activity of the agents, the laborious harvesting, the peak of harvest, the quality control and assurance, etc. He has dedicated 30 years of research to this single agent. I call that true science and, personally, being an engineer myself and a very fastidious one at paying attention to detail, I was pleased to hear of how painstaking he was and remains to this day. I hope this information is of any help to anyone out there. I choose to keep an open mind yet demand to see the science behind it for validation.
Greetings,
My name is Dr. Dana Hansen, Assistant Professor of Nursing at Kent State University. You can learn more about me by visiting my faculty web page at http://www.kent.edu/nursing/facstaff/bio/~dhansen1/
We are contacting you because you are listed as the contact person of the blog. My research team and I are interested in learning about the family caregiver’s experience with reading their loved one’s illness blog.
A family caregiver is someone who provides emotional, spiritual, or physical care or support to a loved one.
I was inspired to conduct this research during my sister-in-law’s journey through breast cancer. After interacting on her blog, I began to wonder what it was like for her husband (family caregiver) to read her blog. The family caregiver of the person who is writing the illness blog can find out more about our study by going to our study website: https://nursing.kent.edu/caretaker. There is a screen for you to share your contact information if you are interested in participating.
After we receive your information, we will contact you to discuss the study further and establish a time to conduct a 1 hour phone or Skype (your choice) interview. During the interview, we will ask questions about your experience as a caregiver interacting with your loved one on an illness blog. A nominal onetime payment of $50.00 will be mailed to you once the interview is complete.
Participation is voluntary. Refusal to take part in the study involves no penalty or loss of benefits to which participants are otherwise entitled. Participants may withdraw from or stop the study at any time without penalty or loss of benefits to which they are otherwise entitled.
If you are not the family caregiver of the person with a serious illness, please forward this information to someone who is.
Thank you for your time and consideration,
Dr. Dana Hansen
Dana Hansen RN, PhD
Assistant Professor
Kent State University, College of Nursing
113 Henderson Hall, P. O. Box 5190, Kent, OH 44242
Hi Dana,
I checked with my primary caregiver (my wife) and she is not interested in participating in the study.
Best of luck with your research.
Andrew
Sure