Holiday Update

It’s Christmas morning, and the house is quiet. This is the beginning of the downslide to the church’s “quiet season” of winter, having worked basically full time hours for the past several weeks.

We opened presents last night because I will be working this morning at the one service our church is offering. Then we’ll pedal off to St. Louis for three days of fun and chaos with my brother’s family. My two sisters from Florida and Alaska will also be there. This makes the first time all four siblings and eight cousins have been together in one place. It’s going to be great.

Everyone will be seeing me without hair for the first time. I’m also round as a beach ball from the steroids. Not my finest moment for family pictures, but it will pass. It will be so great to see everyone!

I’m sorry for my prolonged silence. I’ve been especially moody, and they tell me I can blame the weekly steroid infusions. Some people get really mean; I get weepy. But only three more chemo appointments!

I will be going down to Florida for a couple of weeks in January. This is an annual trip, but this one has special meaning: it will be my last hurrah before surgery. Upon my return, I will have a single modified radical mastectomy on my right side in early February. My best friend since forever is coming up from Florida to baby me for a week. It’s only a two-week recovery since no muscle is involved.

I had originally wanted both breasts removed. But the odds of cancer occurring in the other breast is less than one percent for this kind of cancer; it most often recurs in scar tissue or in a distant site. And the fact that I had lymph nodes removed on the left side years ago from melanoma makes extensive reconstruction surgery very risky. So I will wear a prosthesis until I can have reconstruction on the right side and simple surgery to “match” on the left side.

After about six weeks of recovery from surgery I will begin radiation treatments. It will be daily (Monday through Friday) for about eight weeks. Then the waiting begins for reconstruction. That will be determined by what they find in the tissue from surgery; it could be as early as six months or as long as three years, waiting to see if the cancer recurs. I may be retired by the time I get the look I had when I was younger. But hey, if I’m going through this, I’m going to have something to look forward to.

When I went to my plastic surgeon for consultation about my options, he commented that I had to have caught this cancer early. He apparently expected to see me disfigured. Early?! It was stage 3C! I was aware of pink skin for five weeks by the time I had the mammogram and biopsy. Damn, this stuff moves fast. Many doctors treat the symptoms as an infection (as I had originally thought) for months before thinking about a mammogram. No wonder it’s so deadly. And all the literature tells you to look for lumps, when IBC grows in smooth firm sheets in the skin. I was just plain lucky to have caught this when I did. I know IBC is very rare, but still we should be informed.

Well, this wasn’t much of a Christmas post, but honestly, Christmas hasn’t been much on my mind in spite of the hours I’ve put in at church. Helping others make Christmas memories has been fulfilling, but it seems like I missed it this year. That’s just the way it is; I knew it would be different and I had no expectations. I’ve just lived day to day, but I’ve had a lot of happy moments, too. And in spite of the general tone of this post, I do continue to have hope.

It will be merry at my brother’s house this evening. I can’t wait! I hope today brings laughter, joy and hope to all of you, whether you celebrate Christmas, Hanukkah, Solstice, or sales.

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."

The Music Is Back

Thanks to the urging of kind friends, I took your advice to try the music again, and it's working. My choices are more low-key, but then that's always been my bent anyway.

I'm feeling better, thank you.

Monday afternoon, the chemo infusion was relatively benign, and I had my "chemo buddy" there to chat about possible reactions and how she dealt with them. Ben was working that evening, so my next-door neighbor Dee came to babysit and grade her math papers. She was wonderful. My reactions changed hourly, and it was very strange. Ultimately I had to hit the vomitorium, but she didn't blink—she had the cold cloth ready before I was. It was a rough night, but I've had worse with food poisoning; so while it was unpleasant it wasn't too scary. Dee didn't leave until after I had gone to sleep.

Things calmed down as the hours passed, and I was able to eat on Wednesday. I've had five meals in a row now—all from loving friends who cooked up some wonderful food—and I'm feeling SO much better now. I'm told the flaky feeling that lingers only gets worse, but who's going to notice? I was pretty flaky before this started, so I don't think I can count this as a side effect.

I had my hair cut very, very short yesterday. I can expect to lose it all within a week or two, and experienced friends tell me it's less traumatic to lose short hair. Now I'll be sharing a fashion look similar to many of my gay buds. Just call me "sir." :) As I experiment with headgear, I might share some of the dressing room delights.

I write more freely here, but I do have a CaringBridge.org web page that has been set up by a loving and very organized friend of mine. If you want access to those posts, please email me at birdoparadise AT sbcglobal DOT net and I'll give you the details. It has more of the day-to-day info that isn't as revealing but gives the ongoing process.

The music is back, dear friends, and you never left. I continue to receive life-giving messages of love, concern and support—and laughter. Keeps those laughs coming! I love every one of them.

Big hugs to all of you.

Uncomfortably Numb

I've been seeing some sort of medical professional every weekday for ten days now. At least I got the weekends off.

Friday I had a medi-port put in my chest just under my skin. It provides easy access for infusion of chemo drugs, which starts tomorrow. I will have my son take me to work, and a colleague who is just finishing her regimen will be my "chemo buddy" for my first time. Since Ben has to work, my neighbor Dee is going to babysit me tomorrow evening. (Abe returns from his national meeting on Thursday.)

I realized something yesterday: I haven't been listening to music for the past ten days. I always do in my car and often in my office as well. Each time I think of starting up the iPod, my thought has been "No, not now." It took me a while to figure out why, since music is so important to me.

Music reaches me where nothing else can, even the lame pop stuff. The powerful pieces are especially emotive for me, and that's what is stopping me. Music doesn't give me a feeling, it reflects it. I play what I feel. And I feel numb. There is no music without feeling, and so I cannot play it. It feels wrong. I did try once, but it became background noise and I turned it off.

Perhaps there is a danger in letting myself feel too much right now. I do okay at work and I entertain myself at home. But in the car, when there's nothing to distract me, I cry. It's okay, crying is good for me. But I must be holding back for fear of what may be there.

I have friends who are clamoring to help and have no way to do it from afar. But I thought of a way that anyone with just a little time can be a genuine help to me: make me laugh. No more than once a day—because I'm expecting a lot—write me a funny story about you, find me a link, send me a picture. I love to laugh, and I know it's good for me. Help me find my way back to the music.

Love you guys.

This Arrived In The Mail Today

It's not a cure, but it's close. My mom sent it. She understands.

Positive Prognosis

After a series of appointments with increasingly bad news, I finally got some good news: the cancer has NOT metastasized; that means it has not spread to other parts of my body. That strong breeze you feel is my sigh of relief. What a weight has been lifted! And hope returns.

We are still waiting for the results of the HER2 test, which will determine which of two chemotherapy regimens I will follow. The first session of chemo will be this Monday. Meanwhile, I have to get ready. Today I got an echocardiogram that assured I have a strong heart. Tomorrow I get my teeth cleaned, because apparently it's really a bad idea to do that when your immune system is suppressed. After another biopsy tomorrow, on Friday I will have a mediport put in under my skin near the collarbone to provide an access point for the chemo drugs directly to the bloodstream.

I've been told to expect my hair to fall out about three weeks after the first chemo session. Since they say it's not as traumatic to lose short hair, I'm getting my hair cut very short next week. And now people will start calling me "sir" again. But hair grows back.

Sometime around Christmas I will have a full mastectomy and begin radiation. I may also be continuing a lower dose of chemo.

I have to say this is really quite inconvenient. I have things to do. But I have an army of eager supporters awaiting orders on how they might help. I really don't know yet, but when I need help, I will ask. People have been absolutely amazing. Astonishing grace abounds, waiting to be expressed. Once again, I am its recipient.

Life is good.

Diagnosis And Treatment

I had my MRI on Wednesday, and Abe and I met with my surgeon on Friday. She took us through the steps of Cancer 101 and explained the findings of the tests.

I have a fast-growing type of cancer that has spread to my skin and lymph nodes. At this point the plan is to have me start an aggressive program of chemotherapy followed by a complete mastectomy and radiation. There may be more. She sent me stat to Radiology for a bone scan and CT scan to see if it has spread further. While only the tests can tell us for certain, she used language in our meeting to indicate there is a real possibility of that.

The results of those scans might be with my oncologist when I meet with her Monday morning. I can’t help but notice all the lead times for results are being expedited and I’m being rushed to tests that normally take many days to get appointments and a week or more to get results.

Abe held off leaving for his national meeting, but he left today. He can’t do much here but hold me, and I love being in his arms. But now he’s turning his energy to what he CAN do, and that is his job. If he stays in the top ten nationally, as he has for over two decades, we might have the money to pay for all this. He will be on a plane in minutes if I ask him to be.

Meanwhile, my network of breast cancer survivors is kicking into gear. I’ve never seen anything like it. One survivor owns a day spa nearby, and on Mondays when all the other spas are closed, she opens for women fighting breast cancer and offers all services for free. That’s just a tip of the iceberg. Let me tell you, some women really know how to nurture. They are closing in around me in a warm circle of hope. I have to be honest: I need it.

I’m scared. Maybe Monday’s appointment will help me be less apprehensive about the future. A friend—one of many who are breast cancer survivors—will be with me. She had a double mastectomy a few years ago and is doing fine. She will be able to ask the questions I can’t think of yet. My head is spinning and all I know to do right now is stay busy with my work.

Shit. Pray for me, please.

Diagnosis

Yesterday I learned that I have breast cancer. Apparently having had cancer (melanoma) before does not mean squat in preparing you to hear that word again. After I finished crying and cursing, my thought was “I’m not done!” I have so much to do before I leave this mortal coil; I don’t have time for this.

I’m still in shock. I don’t know enough—does one ever?—about this most common type: invasive ductal carcinoma. I have several friends who have been through it who are helping me choose doctors and know what to expect. The Female Medical Support Network has always been far more informative for me than any doctor, and this time is no different.

This really came out of nowhere. There is no history of it in my family at all, and I can’t think of anything that would make me more at risk than anyone else. It’s just a roll of the dice. I knew something was up when an apparent “infection” did not change over four weeks. The mammogram led to an ultrasound and a biopsy, all within a 2½ hour visit last Thursday. The ultrasound showed three spots that lit up when the doctor scanned for heightened blood flow. I suspect he knew then, but they don’t say anything until the lab results come back.

I will be having an MRI this week and probably surgery next week. I don’t know what sort of follow-up treatment will be required; more tests are in order.

I have told my family and friends, and the response has been wonderful. This may sound odd for anyone who has not experienced it, but I am looking forward to the overwhelming grace which has already begun to surround me. It happened when I had melanoma, and it really helped me deal with my fears. “Cancer” is a frightening word, and, yes, I am scared. While a number of my friends are survivors of breast cancer, three were not.

I will not go gently into that good night. I’m not done. Since this is my reality right now, I will be writing about it. Bear with me, and come along on this roller coaster of a ride.

Overheard: Heaven Scent

Abe and I split a breakfast at Perkin's and hugged in the parking lot to go our separate ways. Abe held me a little longer than usual.

"You smell good."

I don't wear cologne. "I smell like bacon!"

"Oh."

They really need to bottle that stuff.

Heat Wave

Today at 4:00 p.m.

Disaster Averted

Whew! I'm all better now.

Abe was up early and had to move my car so that he could get into his stuff in the garage. He asked me to join him for breakfast at a local restaurant before we went our separate ways. I got into my car and GAH. I was hit with a wall of that awful scent that's showing up in deodorants more and more. Even in this heat (about 90° then), I opened a window and blasted the air conditioner.

When we met at the table in the restaurant, I took his hands across the table and looked gently into his eyes.

"You must never ever again wear that deodorant you have on."

He blinked. "Why?"

I reminded him about the last time I was enveloped in that odor. I do not want to be catching that vile smell in my house OR my car. He said he could barely smell it, but he promised me he would throw it away.

Luckily, he wasn't in my car for long, and the scent is almost gone this afternoon. Dodged that bullet.

UPDATE! DEFCON FOUR! It wasn't him! I have a car from the dealership as they try for the FIFTH time to fix a leaky gasket in the convertible roof. It is the same car I had at the end of May. The odor is still there, and it had transferred to our clothes! Aaaaaaaaaaahhhhhhh! It is back to haunt me! Truly, this stuff is a weapon. It seems to dissipate during the day when air is moving through, but I'll bet it's back this morning. Kill me now.

Blogger Confirmation: This is Me...Online

I had the great pleasure of meeting fellow blogger "This Is Me...Online" this past Tuesday. She was up from Arkansas to visit family very briefly and took some precious time from her tight schedule to see me. We met at the downtown mall so that three young teens she had in tow could have something to do while we talked.

We could easily have gone on for hours. "Meo," as I like to call her, and I have a lot in common—except she's sweet. She has stunning blue eyes and an easy smile. We laughed and chatted and wished Rox could have been there with us. (Road trip!) We had barely begun when the time whizzed by and she had to take her crew to the Children's Museum. I give them credit: they were very patient.

Meo is number 17 on my list of Internet friends made personal with face-to-face visits. This is a lot of fun. Who's next?

Cultural Imperatives: Gay Authors

I have been asking my gay friends to name “must reads” for anyone who wants to understand the modern gay world. I have read dozens of books, but now I’m getting into gay history with such authors as Edmund White, Andrew Holleran, Justin Spring, Armistead Maupin, and most recently Paul Monette.

Monette wrote Becoming A Man: Half A Life Story, a memoir of boyhood growing into a man who finally finds love. The journey to that love takes the entire book; only the final few pages give us any hope for Paul. It is a story of internal struggle and external posturing, trying to be what the world wants him to be. It is only when Monette realizes the fallacy of such expectations that he becomes capable of the love he so desperately wants. It is a familiar theme.

I’m finding so far that many gay men my age have a dark view of men. They lived through a terrible childhood, being told by the world in those innocent and tender years that they are at best “intrinsically disordered.” Ushered into a new era, they celebrated the years between 1969 and 1981 (Stonewall to HIV), which became a brief nirvana that crashed around them with countless funerals and bitter memories of lost hope. I wonder at any gay man’s ability to live through all of that and survive healthy and whole.

Monette’s memoir is bleak. Is it a template for most men of his era? I continue to read (currently a collection from the Violet Quill) and learn. If you have a recommendation for me, by all means let’s hear it.

I'm Out, Part 2

I walked in the Pride parade this past Saturday, never having even seen it before. I did get some shots of a few of the floats as we lined up at the staging area, but only a couple of them are decent. The shots, that is.

This is the float for two restaurants, one of which I visit almost every week. I don't remember seeing these two at Ivy's—and I'm sure I would—so they must work at Greg's. Yeah.

These lovely ladies and about twenty of their friends alternate at appearances all over the state. Second in age only to New York's Gay Men's Health Crisis as an AIDS fundraising group, they have danced and lipsynched to raise over a million dollars for AIDS-related organizations in Indiana since their inception.

The Cadillac Barbie IN Pride Parade was named this year in honor of one of the Bag Ladies who started the first parade nine years ago.

I marched with Indy PFLAG. When the leader found out this was my first time, she said, "Just wait. You'll never forget it." And she was right. As our little group strolled and handed out rainbow leis, we were greeted with loud applause, whistles and hoots, and shouts of "Thank you!" for an hour and a half. My cheeks got sore from smiling. I never took time out to pose for my own camera, and this shot is my only proof that I was there. Sort of proof. See that umbrella? I'm holding it. My stroll perfectly matches the man in front of me, so all you can see of me is my foot. But that's me!

Next year my convertible will be a float for PFLAG. And I'm determined to more than double our presence. We need to show the crowd that they have a ton of support. P.S.: You don't have to be a member of PFLAG to march in our parade. We can invite our friends who are allies to join us. So mark your calendars for the second Saturday in June 2012!

Last year's attendance of 55K tripled the previous year's. This year's estimate so far is 70,000 attendees to the festival that followed the parade. It was exhilarating. I've been to the festival three times now, but I've always been alone. I've got to drag some family and friends with me next year. They're squeamish about what they might see, but honestly, it's pretty tame compared to Mardi Gras.

Today my daughter texted me while I was at the Damien Center. A Facebook friend we have in common messaged her. He grew up on our street and is now a young husband and father. He asked her when I came out. Isn't that a riot? She said she "filled him in," but I have to find out what made him ask. Do you suppose he saw me at Pride?

Oh! I almost forgot: my OneSecond GSA group has met twice, and we're all excited about the future of our churches. (We have members from two churches, although the group is named for my own. My neighbor is hoping to learn how we're doing things and then start a similar group at her Lutheran church.) I'll try to remember to update you on our progress.

I'm still out, and I'm still proud. It's been a great week.

Creation Museum

Abe was working in the Cincinnati area this week and invited me to join him overnight when I was free. We had a lovely evening on Thursday, and Friday morning he headed back to work and I headed home.

On the way there I had noticed the brown highway sign pointing to the Creation Museum. I’ve seen it in the news and kind of rolled my eyes and sighed. After I passed the exit on the way to Cincy, it struck me that I might have the time to see it. Hmm.

I joked to Abe that I could stop by on my way home. But as I was driving it didn’t seem like such a joke. I did have some time and it would be fascinating to see, if it wasn’t too far away. When Exit 11 rolled up, I rolled off the highway. The museum was about a quarter mile away, ostensibly in Petersburg, KY but not close to anything but the highway.

In the midst of scrub and woods, I drove down a rural road and there it was.



The building is new and modern, and the grounds are well kept. There are gardens, a petting zoo, and several cafes on site. There was an officer in the parking lot directing traffic, and the lot was about half full at 10:30a, only thirty minutes after it opened.

The building façade is nice enough, if dull. The interior is really very good: animatronics and displays almost worthy of Disney. We started in a canyon setting and walked through an explanation of science vs. Genesis. (See those lights above? Never at Disney!)



According to founder (and former science teacher from Australia) Ken Ham, whose books are featured in the exit gift shop, one’s interpretation of today’s evidence originates in one of two views: human reason or God’s word. In the view of biblical creationists, the two cannot meet. Click on the picture to read the side-by-side comparison of the two viewpoints concerning fossils and the universe.




Biblical Creationist Theology

From the Biblical Creationist point of view, the universe is 6,000 years old. It was created in six 24-hour days. All animals that we know to have existed lived among human beings before the Flood—including dinosaurs. All animals were herbivores until sin came into the world, introduced by Adam and Eve. Until then, no animals were poisonous. Men married their sisters, but that was not prohibited because DNA was not corrupted by a bad gene pool.



The flood occurred about 4350 years ago. It was the flood that changed everything we see today: animals' bones were covered in mud; the continents shifted in geological seconds to the arrangement we see today; deep river canyons were carved in days or even hours; and all current animal life originated from the pairs off the ark. Their offspring rode rafts of dead trees from the flood to propagate on all the continents.



We enter a room in which life-size animated figures are building the ark. There are some pretty impressive small models on display too. This is the first stage, when the ark was being built.



From the time Noah landed and populated the earth, mankind has continued to stray from scripture. The museum leads us to the current times.

The condition of the world today, which apparently is nothing but terrible in their viewpoint, is due to scripture being abandoned by culture. At this point we enter a darkened black-and-red room intended to be frightening: a door has a dozen locks; graffiti is sprayed on a wall; we see videos of teenagers playing violent videos and watching porn; a church is being smashed by a giant weight as people sing inside. And on one wall is more evidence of a fallen world:



I can’t help but notice that "gay marriage" is front and center.

We move from this display to a repeat of the message we saw upon entering: science vs. scripture, using different and engaging displays of biblical characters and scientific evidence. (The duplication allows crowds to enter through either entry, crossing paths at the center area of "today’s world." It also makes its point in a visually distinct way, driving the message home twice. Well done from an educational standpoint.)

The People

Who was there to see this with me? Many were apparently home schoolers, as evidenced by clothing and family units. (Full disclosure: I home-schooled my daughter through fourth grade due to our township’s low educational standards. BTW: I was right. But it was not about religion at all in my case.) All that I saw in attendance were white middle class. There were two buses in the lot from a church in Tennessee, and a man cell-shouting next to me told his phone that it was a six-hour drive from Alabama. One young teen girl, punked out in makeup and outfit, sat sullenly on a bench in one of the rooms.

The man who started all this, Ken Ham, is in litigation in Australia for alleged financial misconduct with his former ministry there. He has been banned from the Cincinnati Homeschool Convention for disparaging public remarks about a fellow speaker, although he is a popular keynote speaker at other home school gatherings. His ministry, Answers In Genesis, is in the final stages of getting huge financing for a theme park called Ark Encounter, to be built a few miles south of the Creation Museum in Kentucky.

I’ve read plenty about this museum, none of it kind. I won’t pretend to agree with any of its premise, but I also won’t be a shrill critic as I’ve seen in so many places. I felt quite the outsider while I walked through the museum. It was filled with absolutes. I understand that the people who go here are looking for answers, and Ham gives them that. In fact, all of his books in the gift shop are under the series name Answers.

There’s that desire for certainty again. Those who feel alienated from a world they can’t grasp or control for whatever reason will be drawn to someone who gives them answers. Ham was there to give a lecture on “Genesis in Today’s World.” I didn’t stay to hear it. But it appears that he draws people to HIM and not so much to God. It’s all about what he sees in the Bible, which is not to say it’s about God's grace. When the Bible becomes a weapon, it is no longer about grace. This is a ministry based on fear.

When I look for a person who will help illuminate God, I find that it is someone who steps aside to make God visible in their words and deeds. They disappear as they teach by example. I see the inner light. They make me like who I am when I am with them. They give me peace about my relationship with God—not doubt or fear, even in the midst of questions and ambiguity. I found no peace at the Creation Museum, and I pray for those who are still looking.

Pictures so marked are from Ars Technica.

Painkiller

"Love? What is it? Most natural painkiller what there is."

The final entry in William S. Burrough's personal journal.

Positive

The Damien Center had another positive test result today. He is in his mid-twenties. He was counseled immediately and compassionately, but when I had to leave he was sobbing in the parking lot in the arms of his friend.

When a counselor came down and knocked to be allowed in the testing office, I knew what it meant. Others waiting to be tested were ushered into a different room. The tester emerged after the counselor went in and was silent for a while. I asked him, "Does it ever get easier?"

He stared at the wall and his eyes began to tear. He shook his head and gave me a weak smile. He's seen it all, and still it shakes him up.

This young man's life changed irrevocably today. If he takes advantage of all that the Damien Center has to offer, he can live a relatively normal life and a normal lifespan. I hope to heaven he comes back.

Y'all be careful out there.

Overheard: Knowledge

Abe was watching a PBS science show.

"Interesting. I don't know whether to be grateful for new information or disappointed that I don't know everything."

Potent Weapon

You know, I don't complain a lot. When I do, I wish I could it make it an art form—like Rox, for example, who has established a glorious, rolicking rant style that anyone would envy. But my sort of whine will have to do.

I'm driving a loaner car while my own car is being worked on. It's a basic sedan with good sound, nice enough except for one thing: the odor. Oh Em Gee.

Some scientist somewhere has invented the most potent scent in the entire history of the world and convinced deodorant manufacturers to include it in their products. The odor is so obnoxious that it leaves its essence wherever it passes. That's almost normal, but it's also normal for scent to fade away. This stuff lingers for HOURS. And today I learned it can stay for DAYS.

Apparently the service guy who brought around my loaner car was wearing something containing this vile substance. He was in the car for only a few minutes, yet the car reeked of this unnamable sickly sweet stench. It is thick and just wrong, wrong, wrong. I opened the windows and sunroof and hoped for the best, but I continued to detect the heavy scent even hours later. It seemed to diminish last night, but apparently that's only because so much air was moving through the car.

This morning I jumped in to head downtown and GAH. It was back, almost full force. I'm guessing somehow it is embedded in the leather. Ever see that episode of Seinfeld when Jerry couldn't get the valet's body odor cleaned out of his car? This is the chemical version of the same thing. All I can say is, that service guy better not be driving MY car back when it's ready.

This pungent artificial scent is apparently supposed to be pleasant. The only other time a smell repulsed me this much was when a skunk let loose a few feet away. I'm not kidding. This stuff has the potential to be a serious weapon. Am I the only one to feel this way?

Update: Day three. Still there, but fading.

New iPhone!

It took for.ev.er for someone to offer the iPhone besides AT&T, but I knew I'd make the jump as soon as it happened. Sprint coverage was okay—except where I work, live and vacation. And they don't have the iPhone. Verizon's coverage has proved to be excellent, as expected since the husband has used it for years. Yeah, phone calls interrupt the Internet, but I'm used to that already.

I have the new white iPhone 4, and I love it! Can't keep my hands off it. I made the time-wasting mistake of downloading Scrabble. (I knew better than to even look at Angry Birds.) I'm learning all kinds of new tricks, including a screen shot. Here's my home screen. Look familiar?

The dotter and I have had FaceTime phone calls. Very cool. I can be such a geek at times. Good times.

A New Era Of Equality

The Presbyterian Church (USA) has just ratified Ordination Amendment 10-A, which allows churches to ordain gay clergy, elders, and deacons if they so choose. The ruling becomes effective July 10. This is a great day in our denomination, joining the United Church of Christ, the Episcopal Church, and the Evangelical Lutheran Church of America in God's overwhelming grace. Justice has been done today.

Update: My commentary on this momentous occasion is posted on Bilerico.

Anniversary

This month is heavy with meaningful anniversaries.

May 1 was the third anniversary of my blog. I hardly realized it had arrived.

May 10 is the anniversary of my brother's death. It is also the date I sat down with our Adult Ed. pastor four years ago and asked him to begin the conversation in our church to welcome the LGBT community.

May 14 is the date three years ago when I sat with our senior pastor and said that it was time to be intentional in our welcome, and thus began my own journey in helping my church become open and affirming.

May 18 was my brother's birthday. He would have been 49 in 1996.

Today, May 10 will add another bead to its rosary. Today five presbyteries will vote whether to allow churches and presbyteries to ordain gay clergy if they so choose. Only one more vote is needed to reach the simple majority of 87, and one of the presbyteries voting has a history of always voting to approve the amendment. When the Twin Cities Presbytery of Minnesota votes today, the Presbyterian Church (USA) will pass Amendment 10-A.

There will be some fallout, and I plan to write about that. But the decision has been long coming—it is long overdue—and we will rejoice for this step of progress. It is not enough, but it is more. Let us take a moment to be thankful when it comes and gird ourselves for the continuing journey.

OneSecond

I have finished three months' training to be a leader of a small group at my church. These groups form around a common theme, anything from gardening to golf to grandparents. And now: LGBT advocacy. I have put out an invitation—and will continue to do so—to anyone who wants to offer a grace-filled welcome at our church. We are known to be generally welcoming, but we want to reach out specifically to this group kept on the fringes. Because we are a small group and not representative of the entire church, we have this freedom while the church continues to progress in its journey toward affirmation.

I want for us to have a public profile, so I came up with a name and created a logo. (Our church name is Second Pres.)

Our focus will be mission/outreach, but what that will look like will be determined by group members. I can't wait to get rolling!

I'm In!

Faithful readers may remember me grousing about the lack of LGBT support and/or discussion at the annual church educators' convention I attended in February. I complained on Facebook too, and a friend responded, "You should teach a workshop about it." The idea wouldn't leave me alone, and I submitted a proposal within days of the deadline. A couple of weeks ago, a member of the selection committee called my boss and asked about my teaching style. My boss graciously gave a glowing report, having recently seen me in action for the very first time.

I just learned today that my proposal has been accepted. Woohoo! Here's the workshop blurb:

All God’s Children: Teaching Children About Sexual Orientation and Gender Diversity

The headlines of teen suicides reveal the devastating impact of teasing and bullying based on orientation and gender. The Christian community has a responsibility to model respect and offer grace to all people, regardless of their differences. When is the right time and what are the right words for teaching about gender diversity and sexual orientation? Open and caring conversation helps children develop a foundation of acceptance—of themselves and others.

I have many months to develop the content and will need it, since I have not taught this subject before. I'll be asking lots of organizations for help, but I feel really good about being able to do this. The timing is excellent, as our denomination is in the process of voting to approve the ordination of LGBT individuals as elders and pastors. This subject has been in the spotlight for the past sixteen years and voted on three previous times. It is very likely that it will pass this time: the vote currently sits at 80 presbyteries for, 51 against. A simple majority of 87 is needed to pass, and voting ends in September, I believe. With this so much in our national church's headlines, my workshop is needed.

Wow. My heartrate is up. I need to get to work on this.

The Shirt Of Shirts

My friend and prolific fellow blogger Ur-Spo is a psychiatrist. When he isn't shrinking heads, one of his hobbies is making Hawaiian shirts. I can't remember how he got the idea, but he decided to ship one of his shirts to friends around the country (and out of it); and those who wear it and post a picture will get to choose one of four organizations to which he will donate a small sum of money. Is this a great idea or what?

The shirt Ur-Spo chose is an impeccably tailored pattern of Hawaiian shirts, thus earning the name The Shirt of Shirts. I'm thrilled to be on the list of recipients.

Each Monday, Sophie comes to work with me. She is the unofficial mascot of the church library volunteers, and we have lunch with them each week. Christine (center) can't stop herself from feeding Sophie from her lunch, so I've had to supply her with doggie kibble from home. Here's a shot of us with three of my friends from the church library: Rev. Ray, Christine, and Joe.

On Wednesdays I leave Sophie at home and go downtown to volunteer at the Damien Center, Indiana's premier HIV/AIDS support center. I posed with Wes, one of the testers, and Phil, a fellow volunteer. They are really sweet guys.

When my daughter saw my outfit, she asked why I was wearing scrubs.

For the charity to receive Spo's donation, I choose his local HIV/AIDS organization. Thank you, Spo, for the honor. Who's next?

Update: Buddy Bear, the previous recipient of The Shirt, has posted an exhaustive list—with links—of all who have worn it thus far. Warning: NSFW.

Update II: The Shirt of Shirts is on its way to Richmond, VA, and Kelly of Rambling Along in Life.

Dear Abby

Well, there's always something new to try. Today I wrote to Dear Abby in response to this letter:

DEAR ABBY: Can common sense be learned or taught? Some people seem to be born with it. Others have "book smarts" but struggle with everyday common sense.

I fail to grasp simple connections, and I sometimes ask questions that have obvious answers -- for someone else. I know other people who share the same problem, and I admire those who simply seem to "get" what's happening around them.

Is there any way to improve? I'm 38 and married to a man who has strengths in both areas.

-- BOOKWORM IN MONTANA

DEAR ABBY: This is in response to "Bookworm in Montana," who can't grasp simple connections and obvious answers in spite of her high intelligence. I'm a kindred spirit, and I may have the answer.

I'm pretty smart—people comment about it sometimes—but I miss "obvious" clues all the time. It drives me crazy, and I used to wonder what was wrong with me. I have learned that, really, nothing is wrong with me. I think differently because I have Asperger Syndrome.

I can't remember names, including my own mother's once, for the life of me. It is not just a matter of not having the right system or not trying hard enough; it is a synapse misfire. Given enough time, I can do it—but that might be minutes to hours. I read fiction and with rare exception I am unmoved. Give me a book about astrophysics and I am over the moon with excitement about what I've learned.

I've learned to tell colleagues and friends to be direct with me; I will not pick up on subtleties at all. Hinting around will not lead me to act, because I need a concrete "do this, please." My friends grin at my uniqueness, but I have to explain sometimes to those I must work with anew.

"Bookworm" wants to improve. I want her to know she's just fine as she is. We all have strengths, and she can use her intelligence to learn about this different kind of thinking. I love who I am and try to help people understand me. "Different" doesn't mean "less than equal."

-- FELLOW ASPIE

Happiness

Thanks and a happy chirp to Mike.

Rookie Lobbyist

Today I drove down to the Indiana Statehouse and spoke to my state senator about the bill coming up for vote tomorrow. It will attempt to embed marriage discrimination in the Indiana constitution. Stay tuned for the newbie report on Bilerico.

Update: My post is up on Bilerico.

Update II: Our very own Blobby commented on the article, and that comment has become its own post! Great conversation around an interesting subject: do politicians vote their conscience or the opinion of their constituents? Follow the discussion here.

Image from Wikipedia.

Who, Me?

Did Denver eat the kitty treats?

Update: Denver's gone viral, and now she has a Facebook page.

Florida Everglades: River Of Grass

I landed in Ft. Lauderdale on a Saturday evening, and I spent Sunday cruising the coast as the clouds gathered. Late that afternoon my daughter Sheba joined me for her "mental health break." The next day was warm and sunny as we headed down

to the original Tamiami Trail for an airboat ride in the Everglades.

I had spent a few hours online trying to find an airboat experience that would be the memory of a lifetime. Most of the businesses offering rides would put two or three dozen riders on a huge flat-bottom boat and spend thirty minutes out on the grass. Then they would bring us back to their reptile petting zoo and a show with a man wrestling an alligator. It sounded awful.

But I found a site for a business that apparently was staffed by a local airboat owners' club, each owner a licensed captain. They matched us with a man who owned a small boat that zipped through the grass and would fit into tight spots. This two-hour tour (¯ two-hour tour ¯) wasn't cheap by any means, but it was worth every penny.

Our captain Robert took us out on a ramp in Coopertown (population: 0008, according to the sign) and zipped through a lane in tall sawgrass. He stopped for a moment later in the ride to show us the grass. About four feet high, if you pinch and zip up the blade it's slippery; if you pinch and zip down, however, it has thousands of little teeth and you'll get a paper cut the likes of which would be memorable. Keep this in mind for a story you'll hear later.

The water had been siphoned off recently for some unnamed need in a nearby municipality, so it was only six inches deep. That was deep enough to glide through, although water level was usually twelve to twenty-four inches. The muck beneath the water was anywhere from six to twelve inches deeper, as Robert demonstrated with his long boat hook.

This is the "river of grass," as the word Everglades means. As you look out over the sawgrass, anything that emerges above the horizon is an island. They form wherever debris stops and collects. Seeds from birds and wind take root, and eventually an island forms. On one of these tiny islands is a cabin built in 1920; it's still in use today, but you can reach it only on an airboat.

The animals knew for the most part to stay off the lanes that the boats followed. Some alligators still chose to sun on the edges.

We're still trying to undo the damage created by the Army Corps of Engineers back in the early 20th century, when they wanted to use the water for human consumption. So little of the Everglades is left. But canals created by the Corps still crisscross the 'glades.

It's common to find alligators sunning on the warm side of the canals. Apparently they need the heat to digest their food.

Robert has been on the Everglades all his life. He knew the places to find the wildlife, and some of them came to know him. He stopped at a place on a canal and rattled the wrapper of some peanut butter crackers. Out stepped three Purple Gallinules, who jumped up on his cooler for a treat. One of them was trusting enough to step on his hand.

My pictures don't do justice to this bird that looks like a technicolor coot. I nabbed this image from Wikipedia.

Further down the canal, Robert knew where to find a mother alligator (ten years old, eight feet long, he says) that also likes peanut butter crackers. He rattled that plastic wrapper again and she came out from the sawgrass for her treat. You can't see them here, but her two broods were wandering and beeping in the short grass near her. Apparently baby gators stay with mom for two years, and she had two broods six months and eighteen months old with her.

This gallinule was a pretty cool customer trotting amongst the baby gators.

On the way out and back we saw egrets, herons and other birds roosting and taking flight. This is a white egret.

The next time you watch "CSI: Miami," take note of the scene in the opening credits where the egrets fly up from the sawgrass into the sunrise. The camera that took that shot was on Robert's boat.

And if you watch that idiot show "Jackass," Robert and his airboat club were involved in one of the stunts. They dressed a couple of guys in leopard speedos and—well, let me tell it like Robert did: "We drug 'em on skis threw th' sawgrass, poured rubbin' alcohol on 'em, and watched 'em dance like fahr ants!"

I told that story to Ben and a friend, and his friend said, "I'd do it."