November 15, 2011

Living With Uncertainty

We all live with uncertainty. We wake up each morning not knowing for sure what the day will bring; and yet we act as though it will go as planned. Most often, it does.

Every one of us hungers for certainty. It allays the fear of the unknown. We can quiet our thoughts when we know what lies ahead. That knowledge doesn’t have to be true for it to be an effective balm. How often have we been hit with the truth that belies the certainty we held for so long? And it sends us reeling until we can find our way once again.

That is what it’s like to live with cancer: no guarantees, not knowing what the future brings. I know what I hope for, and I vacillate between the highs of hope and depths of fear.

Will God answer my prayers and the prayers of so many dear friends? Yes. But will it be the answer we want to hear? We’ll see. I’ve been thinking about God’s will for me. If His plans for me include an early death, don’t expect me to like it. I have things left to do, not least of which is to watch my children grow into their adult lives and be by my husband’s side well into old age.

While living with uncertainty is sometimes frightening, most often it is enlightening. I have come to accept ambiguity as a path to knowledge. Not knowing keeps me open to new information and growth. This is especially true in my faith journey. The mystery of God unfolds continuously and my faith continues to change and mature.

In between hope and fear is the middle ground of acceptance. It brings peace because it limits expectations, the source of so much disappointment and pain.

I await that sense of acceptance about my future. I’m probably on some well-defined stage of emotional progress as I deal with my diagnosis. It is important to be allowed whatever feelings are part of my journey, even if they cause discomfort. I’m okay with all these feelings as I process them. I’m okay with being angry, sad, hopeful, enormously grateful, and uncertain—often all at once.

It’s all part of life, and I cherish every minute of it.

Cross-posted to

November 7, 2011

Damocles' Sword

I have started the new round of weekly chemo infusions, this time with only one drug, Taxol. It’s much easier to handle than the other drugs: so far the worst side effect is double vision from dry eyes, easily fixed with eye drops. I still get sleepy, but not until 6:00 or so. I’ve been introduced by a common friend to someone with a similar diagnosis and the same treatment, and she’s having a much harder time with side effects than I am. We chat by email after each treatment. She has been decked with repeated fevers and antibiotics. She had to skip her last chemo due to low blood numbers, caused by the effect of the chemo drugs. I’ve been borderline but never so bad I had to postpone treatment.

I still suffer from brain fog but not as bad as before. My thought processes have picked up speed, but I still totally space obvious things. This is not good at work, as it burdens my colleagues to pick up the slack. I’m beginning to feel like a lead weight, so I’m programming my iPhone to remind me of tasks. It’s a lifesaver. I even lost my iPhone for a few hours. I searched and searched that house, and I had to go to work without it. I found it when I got home and immediately downloaded the Find My iPhone app.

My sister came up from Florida to visit for three days. It was so great to see her. I couldn’t join her and Sheba for a walking tour of downtown, but I did join them for the State Museum—where I saw clothes I wore in college in an exhibit about 70’s culture. Talk about culture shock.

Whenever you go to a new city, you need to visit places you can’t elsewhere, so I made sure my sister went to the Slippery Noodle Inn, a blues bar that is 150 years old—the oldest bar in the state. Later we went to Bub’s for their famous hamburger. It was featured on Man Vs. Food on some cable channel. We did NOT get the Big Ugly Burger (22 oz.)—we ate the MiniBub. Yum.

At one point I sat my sister down to talk about my diagnosis and prognosis. Triple negative breast cancer has a 70% survival rate of five years, compared to 93% of other types that are positive for at least one receptor (and therefore treatable with targeted drugs). That’s still not so bad, and I’ve beat cancer before.

When I was first diagnosed, the doctor sat down with me and Abe and carefully explained what they had learned. She wrote down notes as she talked, drawing pictures where necessary to explain growth, etc. At the end of the meeting she handed me the notes.

I went online to research the profile from the doctor’s notes: stage 3c, grade 2, triple negative. I was overwhelmed with the speed of diagnosis and treatment, and I didn’t do any more research after that. It was enough for now. But after my sister left, I finally opened a book that had been recommended by several people: Dr. Susan Love’s Breast Book. It offers as much current information about the disease and its treatment as you’re willing to read, and I felt ready to explore the intricacies of surgery.

There was a word that popped up a few times in my reading that triggered my memory, and I pulled out the doctor’s notes again. Yeah, there it was: “inflammatory.” I flipped through the book to read more about that. What I read there sent me online.

Inflammatory breast cancer (IBC) is the most aggressive type there is. It’s why I was rushed through to treatment so fast. And the five-year survival rate is 40%. The median life-span after diagnosis is three years. Only 28% make it to fifteen years. I understand that statistics are not a prognosis. While I will plan to be in that 28%, I live with the awareness that I most likely am on limited time.

This certainly strips away the trivial. Perhaps it’s just the newness of this information, but I wonder if the day will come when I do not feel Damocles’ sword hanging over my head. Every event is filtered through my new awareness, and so much does not matter.

I need to repair my relationship with my son, who is still angry over perceived shortcomings in his parents. I want my family to know they are loved. All else falls away.

I continue my advocacy for gay rights, knowing someone else is going to have to finish that battle for me. It pains me that the very time I reached my greatest effectiveness—starting a gay-straight alliance in my church, booking a presentation at a national conference—my power to be effective is being stripped from me. The GSA is on hold, and I will most likely not present at the conference.

It is not in my power to change what happens from here forward in regard to my health. So my energy will be focused on making time count. God help me do that well.