Hope, Love and Hedgehogs
We have hope again in our family as sweet Mila has completed her 22 radiation treatments and she is doing well! It’s been a whirlwind starting a new job and taking Mila to daily radiation with the machine going down at times adding to delays and more stress. Cancer cannot and will not define and rule our lives. We continue to live and be healthy trying to survive in a world where we are simply unsure as to what causes cancer and/or what can and cannot be done about it.
This time of year also brings hope, the holidays. My beautiful parents whom I love dearly came to see us for Thanksgiving as they usually do all the way from Seattle with my Mom in great pain because she has to have hip surgery very soon. They came to visit us back in May before Ken passed and also for Ken’s celebration so they have visited now three times in less than 6 months. Since I started a new job I will not be visiting them for the Christmas Holidays but it’s a good time for refocusing and concentrating on work and my family’s health.
We had the traditional Thanksgiving meal complete with a farm raised turkey, no antibiotics, hormones, etc. and I was only able to eat one piece of meat. Some healthy habits remain which is good.
I saw a film awhile ago that touched me deeply that I wanted to share. I rented it from our local library, The Hedgehog based off of a French book entitled “The Elegance of the Hedgehog.” The story revolves around Paloma, a serious and highly articulate but deeply bored 11-year-old who has decided to kill herself on her 12th birthday. Fascinated by art and philosophy, she questions and documents her life and immediate circle, drawing hilarious observations on the world around her. But as her appointment with death approaches, Paloma finally meets some kindred spirits in her building’s grumpy janitor and an enigmatic, elegant neighbor, both of whom inspire Paloma to question her rather pessimistic outlook on life.
A quote from the film “We are all hedgehogs in life, but often without elegance” reminds me that we are all prickly on the outside and that we really don’t see or know people inside. It is also a touching love story and I absolutely love hedgehogs.
I am constantly told how strong I am, that people think I am strong but deep down I do not feel that way. One thing that I am sure of is the strength of love and the love that Ken and I shared and that I have for my family. I wish the world cared more deeply about love, relationships, and community vs. an emphasis on accomplishments, work and getting ahead. I just finished reading the book “The Art of Hearing Heartbeats” which moved me because of it’s love story. Love is really all that matters. Without this life would be a very solitary place without purpose and feeling. Sorry to be so philosophical but being alone I have a lot of time to think about things and what really matters.
On the caregiving side here are a few things which might help after your loved one has passed:
Establish a routine, make simple decisions, practice mindfullness and breathwork and quite simply focus on the now to take time to heal. The pain of death will never go away. Here is a nice quote my friend Mandy posted recently on facebook I wanted to share…
“The thing Is
to love life, to love it even
when you have no stomach for it
and everything you’ve held dear
crumbles like burnt paper in your hand,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weighs you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face
between your palms, a plain face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.”
Ellen Bass
6 responses to “Hope, Love and Hedgehogs”
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Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 
Beautifully written Tina!! Sending you hugs and love… xoxoxo
Wow 22 radiation treatments for a dog, amazing! You are very compassionate and caring to help your dog! Of course most of us would do it for our pets. Still, Ken was fortunate to have such a caring loving life partner.
Glad you are done treating Mila and can move on. Thanks for sharing your journey.
On a fairly positive side, for me (had Anaplastic cytoma-grade3, 100% resection 9/13)…I’m doing great, after 6 wks imrt and 3 concurrent weeks of Temodar, a clean MRI. My bone marrow took a beating after only 3 weeks of low dose, to the point I almost needed a trasfsion. So I will not resume Temodar (despite UCLA loving this drug), instead I’m starting NovoTTF on Tues (hair was removed yesterday), I’m excited and hope my skin will hold up so I can wear it for many months. I’ve heard it takes at least 6-8 weeks to have an affect and 6 months to really work well. It’s slow but I’ve heard good results. Some have reported tumor regression, but its not a quick cure. A NO at UCIrvine said sometimes it may even appear as re growth in the beginning and important not to stop. I’m just writing this in hopes that it will help someone else.
Once the NovoTTF is on my head I’ll feel more relaxed and will start working towards trying to get a vaccine made for me privately. Hopefully will get it set up in 2014. DCvax (a therpeutic vaccine against your own tumor) seems to have good outcome. They are now doing clnical trials on newly diagnosed GBM.
But to get it privately is hard, I’d possibly have to go to England for the first dose and its long complicated and very expensive. There are also peptide vaccines that are approved in Europe, made in Belgium, so might be cheaper, I’m European and still a citizen over there, so may be able to arrange something, but I’m more interested in the vaccine against my own personal tumor. That would be hard and expensive, but hey, what’s my life worth. Well it’s not for me: it’s for my beautiful sweet kids and of course my dear faithful husband who has really been a trooper.
Best wishes to everyone! And Tina, thanks for keeping this blog going. You are truly a beautiful person!!!
As you face this first Christmas without Ken or your family to share the holiday, know that many people who love and support you have you in their thoughts. I am glad to hear your new job is going well. and that Mila kitty’s treatments are, too. Thanks for keeping up this blog. I enjoy staying “Ken-nected” with you. 🙂
Hi Tina. Lots of people say I’m strong as we’ll,however I totally agree with you deep down we are not. Family also get me through, the first year is the worst , first anniversary, first birthday and first Christmas. I have made a decision to take my children away this Christmas to your country in New York, something to focus on, I never been before, we are flying Christmas Day so no time to reflect on this difficult year.
I love that poem. Thanks again for sharing your thoughts and feelings…
Take care of your parents and your cat.. Enjoy your work and stay safe and healthy.
Marilyn
Thank you Marilyn, you too and have a safe trip with your family!
Tina, we never met, but you are so frequently in my thoughts and prayers. I started reading Ken’s story after our daughter was diagnosed with a brain tumor. I kept you both in my prayers. Sharing your story has helped others stay strong as well, even though I’m sure that it doesn’t feel that way to you. I agree with Marilyn that the first anniversary must be especially awful. But, you have so many who care for you and wish you well, as I do. Thank you for sharing your journey with us.