Dear Friends,
I had a better day today. I am in less pain and I am now off the Tylenol 3's and down to extra strength Tylenol. Because this is the first round with the Taxol, I'm not sure what the next few weeks look like, but I'm hoping that there will be a few good days before I go to the next round.
An important and unexpected benefit of this blog is that it gives relief from the isolation of chemo. This isolation isn't just physical (I don't go out to public places) but also social and even spiritual. I have found myself looking for some version of what I am experiencing to help with that isolation. One of the things Arthur Frank says in his book 'At the Will of the Body,' is that his readers have let him know that he puts into words what they have not yet been able to articulate. I have certainly found this reading his book. Being able to put down some of my experiences here gives me a little distance from their immediacy. This gives me more of a buffer and that helps me cope.
I have grappled with writing about what has been hard through this because I don't want it to be difficult for people to read. Chemo is pretty hidden; at least I haven't found many representations of it that strike me as like my experience. Medicine, Hollywood and Races for the Cure all seem to indicate that the major problems with chemo are fatigue and hair loss (as Frank says, chemo seems to be a problem of grooming rather than a deep spiritual crisis). I have found it much more intense than I was led to believe, and this increases my sense of isolation. At the same time that I want to protect people from what is hard for me, I also want to be honest about what I'm going through.
As Catherine was reading Arthur Frank to me last night, I was struck by a citation he used of Joseph Campbell who said 'If you're falling, dive'. I have been so moved that you have stood with me as I fall and dive too. You provide lyrics and photos and videos and humor so I can dive with more courage. I am very grateful for all of you.
Love,
Kip
Bravery beads. Your post reminded me of the trials and accomplishments of my remarkable nephew -- 10 years old, brilliant beyond words, and born with a rare condition called bladder exstrophy. When he was in the hospital for a two week period following surgery, at Sick Kids, he earned a 'bravery bead' for each procedure. It's a lovely program, marking each child's special journey.
ReplyDeleteWith every thought, a bravery bead for dear, courageous Kip.
http://www.sickkids.ca/WomensAuxiliary/Our-programs/bravery-bead-program/index.html
Much love,
Abbie
OK Kip -- in for a penny, in for a pound. You accepted the Lennon.
ReplyDeleteNow -- here's the late, great Janis -- one album side (22 minutes this time)
http://www.youtube.com/view_play_list?p=C46A954E20998C5E
(And including a bizarrely "Old Spice" version of Tom Jones -- you'll see)
And decided it couldn't be all Janis -- Joan Baez,
and then Baez and Mercedes Sosa to finish
What was life like before youtube?
Paul
You don't need to protect us. We're here.
ReplyDeleteI would gladly give
what you need of my lifeforce
to strengthen
and heal you
free you from pain.
what can i do?
I wish I could
squeeze me out
in lines on a page
blue distillate for you
a tab on the tongue
for when you feel low.
Imovane
Timely untie thee
from these mental moorings
drift out with the tide
where wakefulness wanes
dangle your fingers
in fathomless waters
ripple vee vanish
in untroubled distance
a bottle wedges
in the web of your fingers
you smile and squint
at the Waterford glinting
strange scintillations
that needle your nerves
happiness and passion
search for your center
an unblemished moment
of stoppered time
unleashes a luxury,
inhale and be calm.
love, strength, everything,
Walter
Hi Kip,
ReplyDeleteI'm with Walter. No need to protect us. All we have to go through are the words. If writing your experiences out, whatever they are -- while knowing that we are reading them with you -- helps, you should write out every little thing that finds its way to the tip of your virtual pen. Don't worry about us. It's not asking a lot to have us accompany you in print. I'm really thankful that you have.
lots of love,
ml
Kip,
ReplyDeletemla expressed it perfectly. Don't worry about us. As you reach to us through the blog, we can reach to our own supports around us. Imagine the pain and the isolation and the experiences rippling out from the center. We're all better for it.
love K
HI, Kip,
ReplyDeleteI'm adding a "me, too", to all of the above. You give us a gift with your honesty. What I experience reading your blog is the generosity of your spirit. I feel so immature in comparison to you, so that I find myself thinking, "I want to be like Kip when I grow up."
As much as we do not want to think about it, a huge majority of human beings will experience cancer, so it is important for us to know everything we can about it, to see examples of how people deal with this wretched disease, and to learn to be supporters and friends to our loved ones and all living beings who suffer.
What I am learning, not only from you but from Karen and Leda, is how many more options are available now for treatment. The research that we have supported is making a difference. At the same time, I am even more convinced that we must be doing more on the political front to increase the research into prevention and especially into the environmental factors.
It is still difficult in many families to discuss cancer. It is almost a year since my mother had her surgery for breast cancer. She was very fortunate because she did not get breast cancer until 80 and it was caught immediately at the in situ stage. But what shocked me was to find out the my mother's mother died from matastisized breast cancer some 35 years ago. Mom was sure she had told us (we are 4 sisters), but none of us knew until Mom was diagnosed.
So all of this note is a big Thank YOU, Kip.
Sending you much love and healing clear light.
Hope to see you soon,
Roberta
PS: Walter,
ReplyDeleteAre you a published poet? Your words are amazing! Where can we hear / read more from you?
Roberta
as above.
ReplyDeleteas with all the others.
i want to know -- not only to make you feel less alone, but to make the rest of us less alone too -- any honesty, any clarity about pain, of whatever sort, that anyone has to offer, opens up a place where each of us can be, and needs to be, and will be.
and we will each be less alone in it for all of that
say whatever you need to kip, say whatever you can.
much love
e
Thank you, Roberta. No I'm not published yet, perhaps soon. I have been moved by your words as well. If fact, this blog is an amazing community of thoughtful writers. I guess Kip brings out the best in us all.
ReplyDeleteWalter
i think your friends' thoughts on this are pretty clear by now, but i still must say "ditto." we want to go through this with you as much as that is possible, but my sense is that it's also important for us to recognize the limits of our ability to empathize, to put ourselves in your shoes and that's just what this entry did for me. reading your description of your isolation made me think of elaine scarry's the body in pain, where she writes that for the person in pain it is "effortlessly" grasped, whereas for the witness what is effortless is NOT grasping it, remaining unaware, denying it. your blog helps make your experience less elusive and for that i am truly thankful.
ReplyDelete