Sunday, February 27, 2011

A Sharp Deflation

Things are pretty tough right now. I believe that I used up all of my energy in the first two weeks of SGN-35 recovery. Now that I'm in the third week I'm getting a very rude and sudden slap in face from the drug. And here I thought we were friends. But I must say, I took full advantage of the days when I wasn't feeling its effects and that was wonderful.

Craig and I had a fantastic trip down to the Virginia/D.C. area last week spending time with my college roomate, Frankie, and her husband Steve, and Craig's cousins Kim and Brian who just recently settled there. We explored areas of the D.C. suburbs that we'd never seen (Old Town, VA and National Harbor, MD), vegged with homecooked meals and movies, enjoyed a Friday night adventure to Frank and Steve's unreal grocery store, Wegman's, met their cats (pictured in sweaters below), sang our hearts out at an uber fun dueling piano bar, and perused the United States Botanic Garden, Washington Mall and National Gallery of Art sculpture garden.

Literally the day after we returned, Tuesday, the sacks of potatoes starting falling from the sky and smashing me down. The fatigue is tremendous. For the past several days I have been achingly tired, but unable to sleep. My sleep patterns are all over the place. My eyes are constantly burning and sometimes it's just hard for me to keep my head upright. Even the "siesta" idea is not working. Naps have been very difficult.

I slept until 11 a.m. on Sunday. This has not happened since college. I felt Craig come up and check on me several times, putting a hand on my forehead testing for fevers. I had been up the night before at 1 a.m., 4 a.m., 8 a.m. ... and as much as I don't want to admit it, this is even with Ambien sleep aid. And when I do "awaken" it takes me a tremendous amount of effort to get my bearings and to wake my creaky body up. But this Sunday, when I did roll out Craig had a warm fruit crisp prepared, the kitchen cleaned and the dishes put away. So amazing. It really helped me to start the day with a big smile and not let the fear and aches get the best of me. Sammy helps too. She has been extra cuddly and cute. We are very tightly hitched. She nuzzles with me as I get out of bed every morning and she follows me around faithfully as I do my routines. She's always right next to me copying my downward facing dog if I'm doing yoga or sitting patiently in our closet while I put clothes away. I do envy how easily she can fall asleep in the craziest positions and before long be twitching and grunting as she falls heavily into dreams about squirrel and Frisbee chasing.

Coupled with this fatigue are the body aches. Someone may have well clocked me with a sawed-off shotgun to the mid-back leaving it constantly pulsating. It's like my back muscles are welded too tightly to my spine causing them to be tremendously taunt. Just a simple self-hug, crossing my arms across my chest, reveals the stiff pull. And my hips? No they don't lie. They are angry and the bearers of an incredible amount of tightness and tension. Every single time I stand up after sitting for a while, I stretch ever so slightly and they make an audible pop like rubber bands snapping. The hip openers section on my Rodney Yee yoga DVD has been playing quite frequently.

I suppose this is how I felt during the final week of my last infusion recovery. I do remember being dreadfully tired and waiting for my PET Scan results and was so surprised to hear that the drug is working so well. This is what I hope continues to be the case. All of the work the SGN-35 is doing against those cancerous cells is causing quite a ruckus – especially in my chest where I've been experiencing a lot of fullness and have been coughing and gagging as if my body is trying to eject something. I deeply, deeply pray that this is because there is so much cancer bombing, not cancer growing.

On Wednesday night I'll head back to NYC with my mother and sister to spend the night at Miracle House then into the hospital for 8:30 a.m. where I'll get SGN-35 infusion 4 (hopefully my last!) and catch up with my transplant doctor. Obviously this causes me a tremendous amount of anxiety (which could be another reason why my chest is exploding and my body is so drained). I'd put the transplant out of sight, out of mind since we couldn't go through with it back in September. Now here it is, suddenly back in focus, and there is so much to mull over: good, bad, and real ugly. I have a feeling this is all going to be barreling at me real fast.


  1. I wish you all the best with your next scan, and hope that you have more energy soon!

  2. Continued positive thoughts and prayers will be sent your way.

    Frank and Laura Loyot

  3. i hope you're well. i just went through a box of kleenex.

    you are a truly inspiring person.

  4. Dearest Karin - we're prayin' for you. Meanwhile, if Craig has a camera handy, I want to see a pic of you and Sammy doing downward facing dog together! Judy xoxo