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.

Did you feel the earth move?

Or was it just me?

In the last ten days I have seen the power of what happens when I say "enough is enough". I've seen first-hand the power of reaching out to others and saying "We can't do this anymore."

Solutions came flooding in from both friends and professionals.

I'll start with friends: meals cooked with love, hand-delivered checks, beautiful get well cards, gift certificates to local spas, offers for free massage came from all directions!

Thank you Richard, Walter, Kaleo, David, Sunny, Xavier, Tony, Cathy, Lin, John and many others I can't remember.

Though we are unsure of how big of a slush fund we will need to get Tad to Seattle and pay rent there for a few months - we have already accumulated about $1600 thanks to gifts from loving friends! You can't imagine how much lighter I feel.

It feels like the first time in my life I have without any trace of shame or hesitation asked for and received money from others with simplicity and gratitude. I know some people can afford to give and others can't. It feels so good to just let it flow simply.

So if you can afford it - please send a check. If something happens that we don't need it - I will send the money back.

As for the professionals: the list of good deeds is long.

My RN friend Natasha and my hospice MD buddy BJ along with Tad's local GP all tirelessly helped us find a pain regimen that mostly got him out of pain.

The downside however was it got him into a state of complete dependency due to drowsiness, confusion, forgetfulness and mood swings. This caused a lot of distress in both Tad's life and mine. We actually had an appointment with a hospice team in the hopes of getting better pain management locally - but instead they wanted to set up hospice procedures.

Thank god BJ Miller (from my connection to Zen Hospice) recommended we connect with the Symptom Management team where he also works at UCSF. I wept after about three minutes with this new doc as it became very clear we were in the right place. He offered us concrete advice and tweaked the pain regimen. Within 48 hours Tad was both pain free and not loopy (or aggressive or disoriented or euphoric).

A woman called Donna at the Seattle Cancer Care Alliance whom I had contacted took it on herself to make Tad one of her personal missions. She performed the miracle of getting UCSF to send a copy of Tad's chart within days. (Natasha will tell you that just getting a chart from one side of Parnassus Ave to the other can take months!!!). Donna got one of their top leukemia specialists to take a look. His feeling is that the present therapy is good but that if it doesn't work he has two other therapies that may also do the trick. He's planning on seeing us for an initial consultation sometime in the next month.

And one last detail: Donna also informed me that as of January 1, 2011 certain clinical trials are fully covered by Tad's primary insurance without any out-of-pocket costs.

Diane, the tireless advocate-mom of a leukemic 24 year old girl who has become my AT&T lifeline, helped me get in touch with a doc at Johns-Hopkins in Baltimore. He informed me that the pain Tad is experiencing is not end-stage leukemia but simply a nasty unavoidable side effect observed in 1 of out 6 leukemia patients using Nexavar experimentally.

In the face of all this earth-shaking movement Tad has gone from being bent over in pain with no appetite or energy, with an appearance of what his oncologist thought of as "hospice" to being first loopy and in far less pain to now being almost never confused and out of pain 80% of the time.

Finally the UCSF oncologist --clearly prodded into movement by my "what next?" email, the other doctors' sticking their noses in and Tad's improved state-- has suddenly stepped back into the game.

I had written him a rather pointed email (my first to him) asking him to take a position on Tad's state. While Tad was in SF getting blood I got an unexpected call at home telling me he wanted to talk to me about my email. I agreed and the nurse cautioned: "But you better get up here fast because he might leave any minute."

He actually arrived at the appointment relatively on time and started using the future tense of the verb again. He did his usual inching away from us as the conversation went on but less so than before - with less discomfort. He agreed to communicate with the hospital in Seattle where Tad must go to get his stem-cell transplant. Though I still plan on keeping him under pressure via the valiant Donna.

I asked about the Seattle doc's proposal of two more possible medicines if this one doesn't work and almost choked when he went into Old Boy mode sharing that he and his colleague were "old friends" and "actually flew to a conference in Germany together just last week." Instead of choking however I assured him of my deep conviction that he is part of a handful of top leukemia experts and I have no doubt they will work together to get Tad to remission.

So there you have it - Tad's situation is still a mystery. No doc has any documented evidence of what his two meds do when combined. His future may still be quite short but there is some real hope, hope I've been desperately needing for some time.

Thank you all for being part of this journey.