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 CaringBridge.org.

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.

Overheard: Survivor

It was warm and sunny the other day, and I was driving my convertible with the roof down. (Sophie was enjoying the ride harnessed in the back seat.) I had on a simple scarf as I waited with other cars at a red light. Somewhere to my right, I heard someone speak out.

"Excuse me!"

I looked around and saw a man about my age at the wheel of a huge six-wheel pickup truck, looking at me.

"Are you a survivor?"

It took me a second. "I'm still fighting!"

"You'll make it. I'm a survivor." He smiled and gave me a thumbs up.

"Thank you!" I smiled. The light changed and we moved onward on our separate ways.

Great Update!

I am finishing my fourth course of chemo, which will bring a new wave of cluelessness. But that's okay, because today's exam showed NO MEASURABLE TUMOR in my breast—and the last exam said the same about the node tumor. The large tumor measured six by seven centimeters at the start of chemotherapy, and the node was three centimeters. The kind of cancer I have (triple negative) is not always responsive to chemo, so we didn't know what to expect.

Ladies and gentlemen, it's working. I am so thankful and full of hope for my future. Hope is the stuff of life.

Tabula Rasa

It’s three days before my fourth and last A/C chemo. (After that I will start a 12-week regimen of weekly Taxol infusions.) As I reported briefly on Facebook, the chemo and your prayers are continuing to work! The node tumor is undetectable and the large tumor continues to shrink about a centimeter per infusion. Can’t wait to see the progress in Monday’s exam.

I’m feeling okay today. My energy came back yesterday and will last until Monday afternoon. The energy drain is due to my very low hemoglobin: I’m quite anemic. It’s like climbing at 10,000 feet every day with no acclimation. That was no surprise, but I didn’t think about the cost of low oxygen on the brain. I’m slower but okay in the moment, and today’s energy is giving me enough brain cells to string some sentences together. But when I try to look back to the past or forward to the future—anything in the “not now”—it’s difficult. Here’s a picture to show you what I see:

Yeah, I don’t see anything either. And I’m not kidding. If I don’t have a picture to wrap around an idea, it’s just not there right now. And I get another dose on Monday of the stuff that takes it away. As long as it’s taking away the cancer with it, I can certainly live with that. I’m spending long stretches of time with literally nothing on my mind. So this is what it’s like to be a guy. ;)

My colleagues and volunteers continue to be wonderfully patient. I have instantly forgotten a question just asked and had to have it repeated. At least I could answer—although now I could not tell you what that question was for the life of me. I am thankful that pretty much all of my responsibilities are for events I’ve done for years, so my mental faculties aren’t being tested too much.

My greatest concern—after my health—is for the presentation I’m supposed to make in February at the national convention for Presbyterian educators. It’s a big deal, the first of its kind, addressing children and sexual orientation and gender identity. I need to be there. But this month was supposed to be the time I spent writing an elementary curriculum to be used in November at my church—with my bosses’ blessing. And today was the first day in weeks I could think long enough to put two sentences together. It all fades away in three days with my next dose.

I’m so afraid it’s not going to happen. I won’t cancel yet, and I might still get a slot for 2013; but this is the year for this subject in our denomination! Dammit, I need to do this, and I will be upset if I can’t. Yeah, I know I have a good reason. I don’t care. This is important. Someone needs to be talking to our church’s educators on this issue, and this year it was to have been me.

Cancer sucks.

What Day Is This Again?

When I haven’t been working, I’ve been sleeping. More than a week has passed by, and I’ve slept it away. A friend pointed out that actually I’ve been fighting cancer. So yeah, I’ll own that.

I have been waiting to post something that doesn’t sound like a whinefest. Waiting hasn’t worked, so here it is.

I lost most of my hair on Friday, so on Saturday Abe lovingly and gently shaved my head, cleaned it up with his electric razor and finished it off with a Three Stooges buffing. I thought I would look like Mrs. Potato Head, but really I look like Elmer Fudd.

Now I have to fuss with scarves and hats. Do you know you have to iron those scarves every time you use them?! I’m getting advice from a number of my gay buds to ramp it up with operatic eyebrows and saturated lip colors. Me? I’m a beach bum! My eyebrows are disappearing, though, so I’m using brown shadow to fill them in. At least you can see them now. I do have two fedoras and a bunch of scarves to mess with when I have to go out in public.

I can’t get rid of this fool cold. In a coughing fit that scared my colleagues, I apparently cracked or broke a rib. (The sixteen-year-old physician’s assistant wasn’t sure.) Now I have codeine to stop the cough—and put me back to sleep. I’ve got a brand new batch of white blood cells, courtesy of a booster shot, that just might take care of this cold before next Monday’s chemo.

I still have cards, emails and meals on a regular basis that make me laugh, cry and be grateful for such good friends. (Wait. The meals do not make me cry.) With my colleagues’ and volunteers’ patience and help, I have been able to maintain my duties at work. Two big annual events this weekend will continue the busy “season” of the year at church, and they’re coming together well.

So in spite of all my whining, I’m still coming out way ahead. I remain so grateful for all of your wonderful wishes, prayers, and acts of kindness. It is the stuff of dreams.

Cross-posted on CaringBridge.org.

Hope And Expectations

I’ve learned to distinguish between hope and expectations. While both feelings anticipate an outcome, hope is the one to which I must cling because it embodies faith in a desirable conclusion. Hope is amorphous and resilient, adapting to moments, emotions and setbacks with renewing energy; it is the essence of God’s grace made present in everyday events. Expectations have definitive boundaries, and if they are not met, they shatter. Expectations at best offer satisfaction but more often can lead to sorrow, while hope remains uplifting even in the hardest of times. Keep those good wishes, prayers and laughter coming! They bring hope.

Cross-posted on CaringBridge.org

Genuinely Good News

I had my second chemo yesterday; two down, two to go of this particular regimen. (Then more of a different kind.) Before I sat for my infusion, I went through all the status tests: blood, weight, tumor check.

Everything looked good, so in spite of my cold and very low fever (99.2°), I was given the go-ahead. But the GREAT news is that my tumors were significantly smaller than when I had my first chemo two weeks ago. It's working! Good news too, that they gave me a different anti-nausea drug that really works. I'm somewhat flaky—two martinis—and tired, but this is such an improvement that I feel almost like dancing. It's those martinis.

Last night I checked the shower drain as I have every night this week. Uh oh. Lots of extra hair. It won't be long—literally. So I went online and ordered a hoodie that reads "I fight like a girl."


Damn straight.

Almost Normal

I have a cold. No big deal; every fall the germs filter down like leaves. Except THIS cold sent me to the emergency room last night. My immune system is compromised, and whenever I have a temperature of 100.4° or higher, I must go to the ER and get IV antibiotics.

I spent three hours getting poked, infused and tested. I am thrilled to report my white blood cell count was very high, enough that I could go back home with my new antibiotics. Now that I’m home, it’s an almost normal treatment.

I am feeling less flaky these past few days, more like having had one martini than three. This is a good thing since I have few enough filters anyway. A little off-balance: almost normal.

My house is coming together after being ignored for a long time. I was talking to a longtime friend about my sudden unease with circumstances that didn’t bother me so much a month ago.

“It’s control,” she said. “Your life is out of control, and you want to have something you can manage. You’re aiming in on your house.” She nailed it. Fixing up the house seems like such a mundane thing; but it is bringing me a sort of peace amid the chaos. It feels almost normal.

Do you have any idea how wonderful “normal” is? The commonplace, tedious details of everyday living are beautiful markers of normalcy when the usual becomes unusual. To know what to anticipate, to be able to take things for granted, to have expectations met in an ordinary, typical way: ignorant bliss.

But there’s another side to this unusual situation: the outpouring of simple acts of kindness is an overwhelming balance on the scale against chaos. It is my privilege to be in a position of service, helping others. Now it is my turn to allow that privilege to others, that they may express the grace that awaits circumstances such as these. There is no true balancing of the scale when it comes to grace; it simply is. And the glorious part of it with these remarkable people stepping up in my life: it’s almost normal.

Cross-posted on CaringBridge.org

Overheard: Staff Meeting

We had a big staff meeting today. About thirty people were listening to our new pastoral residents talk about what they anticipated as they begin their two year residency program. A loud cell phone pierced the quiet conversation. Our senior pastor was not amused. As the offending party wrestled with the ringer and looked at the screen, pastor drawled dryly in his southern twang.

"That had better be Jesus."