pain, sorrow, love and joy

Slow-acting chemotherapy has a good side and a bad side: it's slow-acting and it's slow-acting.

When Tad was getting heavy chemotherapy in the hospital he received several substances over five to 7 days then went into what became a familiar series of painful symptoms: loss of immunity, shivers, fevers, peeling skin on hands and feet, sores throughout the GI system (particularly entry and exit points), fatigue, weakness, nausea. When that was all over his immune system would bounce back, he would go home and proceed to lose all his hair.

All of it.

With his present regimen he has been having many of these same symptoms, generally at lower intensity, but sporadically over a period of five months - with a full head of hair.

In all, the assault is less severe in intensity but it is long, painful and relentless. The impact on the morale is at times unbearable.

In times of great discomfort Tad wonders aloud how long he can keep doing this; if it's possible to live like this much longer.

My fearful thoughts of him dying in the middle of the night have reappeared: I awaken, look over at him, look for breathing, see none and wait for it to start again. In those seconds --or perhaps milliseconds-- my mind races. No - my mind is electricity: shooting scenarios through my brain. Then he breathes and I go back to sleep.

The pain, drowsiness from pain meds, diarrhea, aches, nausea, lack of appetite are all causing visible changes to his body: tension in his muscles, hunching, weight loss, low energy.

At times I want to run away - to go outside and scream at the moon.

The other truth - one that I cannot omit - is that we have MANY beautiful moments.

I don't just spend time wondering how the cat will adapt to living at my house once Tad dies - I also spend lots of time cuddling her between him and me on the sofa or the bed. She keeps us smiling with her antics and has us wondering what the hell could possibly be going through her feline brain.

The gorgeous flowers in his yard aren't just a source of psychotherapy for me, a way to step outdoors, put my hands in the earth and no longer wince every time I hear Tad moan in pain. They are also a great distraction we use astutely to steer our conversations away from illness and death. We wander among them almost daily commenting on the progress of this dahlia sprout or that hoya vine, the necessity --or not-- to repot the camelia and the relentless pests on the new fragrant yellow roses.
Movies and TV aren't just a good sedentary activity for someone with low energy - they also help us tap into our humanity, help us feel the tears that we tend to keep at bay due to the constant work of staying ahead of symptoms.

A recent episode of Grey's Anatomy had me suddenly sobbing when one of the docs stood by and watched her beloved being carted in after a car accident. Somehow the hokey fact that she had broken into song brought out no snarky comments or critical thoughts but instead had me tapping into something deep and sorrowful that needed letting go. In these moments we connect deeply, Tad holds me in my sorrow, caressing my hair and calling me "Greggy". We fill the wordless moments with deep love.

Not surprisingly - shows with gratuitous violence and physical assaults have gone from being entertaining to unbearable.

The over-priced blender for which I once developed a healthy resentment seeing it as a waste of money and one more unnecessary gadget - has now become my favorite way to invent crazy smoothies as a means of slipping Tad protein powder, fresh fruit and fatty liquids - in a way that will trick his stomach into appetite instead of making it recoil with nausea.

Sunday evening I sat in a "heart circle" around a fire at the full moon - a very Californian ritual where we deeply listen and deeply share with peers. I spoke of my childhood, saying that my greatest gifts have emerged from my deepest wounds; they are like two sides of the same coin.

As I cross what is no doubt the most difficult period of my life - I am daily aware of the many gifts that come with it.

PS We will be going to the Seattle Cancer Care Alliance (aka Leukemia Central) toward the end of May - about one month after round five of the slow-acting chemo he's presently taking.