Thursday, January 13, 2011

Fish Eyes and Mid-Day Siestas

It's been two weeks since my first dose of the experimental SGN-35 chemo drug. I've been knocking on a lot of wood since because I continue to be virtually side effect free. This is of course a relative term as I can't pretend that I feel at the top of my game. I can't erase what my body has been through over the past two years. We're still playing a lot of catch up. But I'm thrilled with how far I've gotten and continue to go.

If anything, there are some odd feelings in my body that arise a few times a day. It only happens in the left side of my body, but that side will suddenly feel very heavy and that all of the functions on that side of my body are very labored. When this happens, I can literally feel – almost hear – the blood coursing and churning from my heart up and down my left arm. Other times it will happen in my left leg, starting from where my bum and the top of my leg meet and coursing with little shock waves to my ankle and back up again. It's not painful. It's not achey. It's just a strange, dull awareness and heaviness. There is also a dull ache in my lower left back that creeps in and out of my body consciousness with no apparent pattern to it.

I'm not surprised at these strange feelings when I think about the little missiles SGN-35 is planting and detonating up in my body. It's hard to know what is real and what is a manifestation of my anxiety at this point. I've read about many people who have been on the drug that felt fine for the first couple of weeks then developed incredibly painful neuropathy in their fingers and toes. I do not, not, not want this to happen to me. This is why I keep moving, keep breathing. Yoga and walking every day have to keep that blood flowing, moving, pushing through. Moving the bad out. Keeping the good in.

However, gone are the incredible body aches, tissue sensitivity and bone pain that I've felt from past drugs. Also gone is the incessant need for blood work. I have not been to a cancer center of any sort since my infusion on Dec. 30. That's the longest run of freedom I've had in quite some time. This is fantastic, but also puts a lot of pressure on me as I want to do what is "right" with this bonus time and I have no idea how to figure out what that is.

I feel like a fish who's been living in a teeny aquarium and has suddenly been carried in a clear plastic baggy and plopped into the big ocean without any idea how to handle myself. I'm too timid and still too weak to jump back into the school of other finned friends that's whizzing by. The hardest part is knowing that my time to backstroke through the pain-free tides is only temporary. It won't be long before I'm back to banging my head on the fishbowl glass. And oddly, there's a little bit of comfort in that because it's what I've come to know. I don't like that feeling at all.

All of this thinking about what I "should" be doing makes me very tired. This is what I mean by my New Year's intention of being more present and content. My eyes especially are very tired. I know that I don't sleep well and I have lost my ability to power nap these days. I cannot power my mind down. Even if I am incredibly fatigued and I have the strange blood coursing happening and force myself to lay down, I haven't been able to get past just closing my eyes. Incessant thoughts creep in and out and I can't escape to REM.

I decided that instead of calling them "naps," I will refer to these necessary downtimes as "siestas," which occur often in the Colombia-set novel that I just finished. Siestas sound so much more enticing, sexy, and purposeful. I will work to have more restorative post-lunch siestas. I told Sammy this today and she seemed to like the idea, curling up in the folds of my legs for a dog siesta of her own following our snowy walk.

The sinus/upper respiratory infection that I had been fighting has finally reached an end. I have only lingering drainage after it hung on for nearly two weeks. No more excrement of unnatural neon colors. What finally cleared things out in addition to the antibiotics was a Neti Pot – something lots of people had recommended I try. You make a solution then pour this little pot of it up one nostril while bending over the sink so that it can travel through all of your sinus cavities then drip out the other nostril. At first I felt like I was drowning myself. Once I got the hang of it, though, it was sadistically rewarding in the way that popping a good white head zit can be.

We've had a tremendous amount of snow here – more than 2 feet. It's beautiful, light and fluffy, peaceful, clean and crisp. I love it. I love walking in it, shoveling it, watching it cascade. It makes everything feel so fresh and new – a pristine white canvas ready to be painted.

I receive my next infusion at Sloan-Kettering this coming Thursday, Jan. 20. Until then, I'm continuing to fill my days with friends, family, reading, writing, exploring nature, cooking, wistfully researching international flights and writing retreats. I'm highly focused on getting strong and ready for that wee little thing that's still coming down the pike ... *transplant* and the weeks of hospital confinement that will follow it.

One step at a time. One foot in front of the other.


  1. I believe there are some supplements you can take that are nerve protectors. My husband ended up with neuropathy - and it isn't much fun. I'm just glad you are on SGN-35, but if you didn't have to endure neuropathy - well, that would just be icing on the cake.

  2. Heard about your blog on the News recently so visited your site to read every post. Just wanted you to know you're in our prayers as you undergo the next chapter in your journey. Keep a postive attitude!
    P.S. My husband has a rare form of blood cancer and has undergone similar treatments - most recently bendomustine. He is a 12 yr. survivor!

  3. We read your blog for so many reasons: From the first time we met you, we saw your amazing spiritual essence shining so brightly in your eyes! We recognize YOU as a reflection of ourselves. We admire your words of wisdom, your courage, your raw human emotion, and your example of creating a world "anew" each day. You, Karin Diamond, are a beautiful gift to all who have the privilege to connect with you. Wishing you peace and nourishment every day:) Affirmation: "Healing light illuminates every cell of my body, dissolves everything that should be dissolved, and builds up what must be built up again. Thank you!" (energy charging mudra-from the book "Mudras, Yoga in Your Hands" by Gertrud Hirschi)....all our love, Amy & Mark Bannon

  4. Karin - were you featured on some tv news cast recently - as 2 recent comments suggest? If so when?

  5. I know the feeling of what to do with your new-found, yet oh-so-temporary freedom. It's both liberating and frustrating at the same time. To want to run, but still being too weak to run. To want to live your 'normal' life, but knowing that more treatment is around the corner. I'm told it is typical see-saw behavior in us cancer patients. Lots more patience and don't pass judgment on yourself.

    Me? I've somehow fallen into the pattern of being really angry at everything these days. I think it is an increase in energy + freedom from treatments (although I still get blood draws twice a week) + diminishing patience for bullshit. I'm trying to focus better - yoga and walking sounds like the right way to do it.

    Hang in there kiddo. Enjoy the good days.

  6. I had saw you talk briefly on the news last week and decided to follow your blog. I admire you for being so strong and postive throughout this whole experience. I don't know much about cancer but I do know that there are many kinds out there. I coordinate mobile mammograms with Hartford Hospital for my company. I know it's not much but it's the least I can do for the women at my company. I think awareness and being given the information and facts early in life is beneficial. I wish you the best in your journey and pray for a successful outcome!

  7. Our prayers are with you tomorrow as you undergo your next treatment.