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

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.