Spring Break: Asheville

In the thirty years that Abe and I have been in Indiana, we have made almost all our friends at the church where I’m now employed. Of those friends, four couples have become our inner circle. One of those couples moved away last year to Asheville, and we stayed overnight with them on our way down to Georgia, where we would spend a few days with my brother’s family.

Kevin and Cindy decided it was time to make a change before they got too old to enjoy it, and last summer sold pretty much everything and moved to Asheville. We have kept in touch, as have the rest in our circle of friends. They have a large older home with a garage under the house big enough to hold six cars. Kevin is in heaven; he has the gift of carpentry and is setting up his workshop down there.

Abe and Ben had driven down from Indiana (in my convertible), stopping briefly in Henryville to see firsthand the damage wrought by tornados a few months ago. Abe was conscious of being respectful and asked locals about viewing the area. Abe wanted Ben to see the devastation and the help that was needed in an area hit by tornados. They stayed somewhere in Kentucky that night and picked me up at the Asheville airport the next day. We headed for Kevin and Cindy’s home.

After we were ensconced in the guest rooms, we had dinner at home and then headed out to see downtown Asheville. It was packed, and the demographic skewed young. It looked like a college town, which Asheville is. We had ice cream in the middle of all the activity while the Friday drum circle boomed nearby. Its reputation as an arts community was also evident in the diversity of the crowd and businesses.

The next morning Cindy drove my convertible and took us all on a tour of the Biltmore Estate, where she works in the winery. I’m the only one in my family to have seen the Biltmore House, but we didn’t have time to do it justice. There are still Vanderbilt family members who live in modern homes on the estate, and Cindy said a few live in private areas of the mansion. On this day, seeing the grounds was all we could do, but it was pristine and filled with blooms.



After the tour we said our farewells and headed south. We would see Kevin and Cindy in a week in Chicago.

Spring Break: Connecticut

On Thursday morning I took the Megabus to Connecticut, to meet for the first time a friend I’d made through our common experience with breast cancer. A month after I was diagnosed, a friend wrote me to say that Jane, his mother-in-law, had also gotten a similar diagnosis. I wrote her a letter, and soon we were exchanging weekly phone calls. When I was planning my trip to NYC, I realized I could zip over to Connecticut on the Megabus, and I made plans with Jane to see her, if only for a short while.

Jane’s son picked me up and we had a great talk on the thirty minutes to her home south of Hartford. He stayed the afternoon with us as I got the family history and saw all the pictures displayed throughout the 150-year-old house.

We walked across the town green and down the street to see “The House,” now an attorney’s office, the former family home for generations. The current owners graciously gave us a tour as Jane described the family gatherings she attended there.

We had lunch practically next door at a family bistro. More history, everywhere I looked. I grew up in Florida, where history only begins in the ‘20s, after businessmen figured out how to carve civilization from the swamps. Families there are transient, locals being the rarity. Roots do not go deep in Florida; what a contrast in Connecticut!

Jane was described to me as unconditionally loving, and I have to agree. She was sweet and funny and attentive; but that was no surprise to me. Our friendship had grown over the months, and this was just a continuation of our phone calls and letters. She and I were quite the pair: both of us with excruciatingly short hairstyles—hers white, mine light brown. She did not need the mastectomy I had, but she was still recovering from radiation treatment, as apparently am I. Still, we laughed a lot, and the day ended too soon. (In our next phone call, Jane pointed out that we never talked at all about cancer, treatment or recovery. I guess we were having too much fun.)

I had to get up early the next morning to get a ride back to LaGuardia, where I would fly down to meet Abe and Ben in Asheville, North Carolina.

Spring Break: New York City

I had only three days in New York City, but it was a total blast. What made it so was meeting up with friends who lived there. (I should have a lot more pictures, but I was having such a good time that I forgot entirely about having a camera unless I was alone. I think I took five pictures in total—all else came from the Web.)




On the advice of a friend, I got a room at the West Side YMCA for a third the cost of a bad hotel room in Manhattan. It was a few yards from Central Park and two short blocks to the metro in one direction and Lincoln Center in the other; what a great location! The room was like a dorm room, quite spartan but with a flat screen TV, and the bathroom was down the hall but private when you used it. I plan on staying there again. Who goes to NYC to stay in your hotel?

I arrived early Monday afternoon, having taken two hours to get from LaGuardia to the Y on the SuperShuttle. (There was no special reason for having taken so long, just a lot of traffic. Plan on that when you come here.)



After a nap and leisurely time in Central Park, I took the subway to Bryant Park to meet Eric for the first time. Eric blogs over at Sore Afraid about his new life with his husband and newborn twins. He is sweet and brilliant and we had too little time together. That was to become a theme for my visit.



Eric and I walked from the park to St. Clement’s Theater to see the dramatic reading of Tony Adams’ new play, “A Letter From The Bishop.”



I’d seen a preliminary reading in Ft. Lauderdale, and this one took it up several notches. This play really needs to be produced. I wish I had the connections to make it happen, because it could change the hearts of many on the subject of marriage equality. There was a small after party at a bar down the street, where I chatted with cast members. I met Joe Jervis, proprietor of Joe.My.God, and his friend Dr. Jeff, and I recognized a few other faces from the Interwebs, but there was no way to talk with everyone.

Tony’s sweet husband Chris had to return to work, but he graciously gave me a detailed outline of what he recommended a newcomer should see. I had requested tips for what a tourist might overlook, and he gave me enough choices to fill several weeks. I used his advice on Tuesday, when I met up with Patrick (of Loose Ends). Patrick and I have met a few times before, when he came home to Indiana. This was our first meeting in his second home of NYC.



Patrick met me at Columbus Circle and we headed down to Chelsea to The High Line, a park created from an abandoned elevated railroad track. We both had umbrellas and we needed them, but the constant gentle rain meant we were practically alone in the park.



We did the entire length of the High Line and exited to try out Chris’ suggestion for lunch, Pepe Giallo. Oh. Em. Gee. They had the best food I’d had in years. I allowed Patrick to have one (one!) rigatoni of my salmon pasta dish. Mmmmmm.



After lunch Patrick and I toured galleries on 24th St. (under the High Line) and decided there was one worth returning to, C24’s exhibit of portraits fashioned from layers of cut and tied tulle. Fascinating.

The remaining galleries were puzzling or boring. All of them were manned by two attendants who apparently spoke only when addressed, otherwise staring into screens and quietly clicking away.

I lasted about five hours before I needed a nap, so I bid Patrick goodbye at the subway and headed back to my room. I was to meet David (of the now-defunct Someone In A Tree) at his museum later in the evening. I had managed to stumble upon the one day each year when all of the museums on Fifth Avenue (Museum Mile) are open and free to the public from 5 to 9PM. I planned on seeing one or two before having a late dinner with David, so I lay down to rest before grabbing a cab to the other side of Central Park.

I woke up at 8:15. Guess I really WAS tired! I barely made it to David’s museum before it closed. He was looking especially spiffy in his suit and tie, and we raised our umbrellas in the now-pouring rain to head down to Astor Place and a tiny Thai Ramen restaurant. (“You did say you wanted something different, right?” David asked. Of course!) The food was good, the conversation was great, and David and I parted ways at the subway. I slept in.

Wednesday was reserved for Tony, who was still resting from the chaos of producing the play’s reading. He met me at the door and we took off for the Leslie/Lohman Museum, where an exhibit of photographs of The Piers was on display.



It was a fascinating piece of history of New York City gay life, which is changing faster than we can comprehend. Some bemoan that, but isn’t that the nature of life? We all wish to cling to the best memories and discard the pain.

Tony took me to Pinto, another tiny restaurant that served delicious and light Thai food. He led me by the Stonewall Inn, also on Christopher Street, central district of all gay life in New York. That center seems more diffuse now, a sign of the acceptance and openness long overdue. When Tony heard that I had not seen in person the Bethesda Fountain, scene of several weddings he officiated, we took off for a stroll through Central Park.

While I never tire of conversation with Tony, my body was complaining, and I went back to my room in late afternoon. I slept for twelve hours. I had wondered what my energy level would be, having not really tested it since treatment stopped. I think I’m good for about five or six hours of activity before I need to nap for few hours. It’s going to take some time to get back up to speed, but that’s okay.

Well rested, the next morning I got in line on the sidewalk to board the Megabus to Connecticut.



Update: for those who are counting, this brings my Personal Confirmation count of Internet friends to 21. Woohoo! Who's next?

Just Add Chips

Overheard: Preschool

It's pick-up time at the summer preschool, which meets on the same floor as my office.

Two teachers: "So I said to him, 'Give Ben back his tiara.'"

Two dads: "She wanted to name him Luke—that's his middle name now—but I told her I just can't say, 'Luke, I am your father.' Just can't do that."

Verbatim: Cat Instructions

Sheba is living with us until she can get back to school. She brought her cats with her, and they live in her bedroom. She's visiting family in California and left instructions on feeding the kitties. (BTW: that's a "K," not an "H" in the second kitty's name.)

Balanced

Three days ago, my breast prosthesis arrived. It’s not a perfect match, but it’s close enough. I have a balanced appearance now. Honestly, I really didn’t care, but others were uncomfortable seeing me with one flat side. And my clothes do fit better. It seems I did all my mourning before I lost my breast. And I truly did mourn, especially as time came to a close. Once done, it was time to move on.

It will be at least a year of healing before I can consider reconstruction. I am not eligible for an implant, but that’s okay—I am uncomfortable with that option. I must have a delicate procedure called a DIEP that calls for transplanting skin and fat from my abdomen to my chest. Microsurgery techniques will connect blood vessels to keep the transplant viable.

While I was introduced to a breast surgeon here, I’ve been considering a hospital in Texas, MD Anderson, which has a clinic dedicated to inflammatory breast cancer. When I mentioned that to someone here, she strongly encouraged me to go there for reconstruction. This is a relatively new and difficult procedure; I want to have a doctor who’s done it a lot and well. MD Anderson has that reputation. Bonus: I get a tummy tuck, something I have wanted since I had an 11½-pound baby 20 years ago. ☺ I consider that my reward for going through all this.

The undercurrent that you don’t hear much about is the uncertainty of how much time is left. The everyday-ness of life eventually overshadows it, but there it is. Of course, no one knows how much time is left. This wake-up call helps me to live each moment to its fullest and leave no wish untried. Next stop: NYC!

Ordinary Time

Treatment is over. I had the last radiation appointment on Wednesday. Now it's just healing from the effects of radiation—pretty strong in my case—and then follow-up visits here and there.

This is "ordinary" time, but it feels anything but ordinary. It's surprisingly somewhat melancholy, I suppose because there is nothing left to do but wait and hope. It will be at least a year before I can consider reconstruction because IBC has a real bad habit of coming back, most often in the scar tissue. My prognosis is good and I am very hopeful.

I have a lopsided appearance: DD on one side, slightly concave on the other. I can't wear a prosthesis until all the effects of radiation are gone. I honestly don't care. I forget about it much of the time. I will deal with the prosthesis when the time comes.

I have finally been given permission to lose the 20 pounds I gained from steroids while on chemo. Well, the steroid weight has gone—about five pounds—and the rest is from the insatiable appetite those miserable steroids gave me. This is my new "treatment," to regain my fitness and shape.

I'm going to NYC in June, and I need to be fit enough to walk the streets of Manhattan for three days. I'm SO looking forward to that! I will also manage a too-brief meeting in Connecticut with a delightful woman who was diagnosed a month after me. She and I have talked frequently (and written real snail-mail letters during my enforced silence) and we are both excited to finally meet. I'm so grateful to her son-in-law for introducing us.

This community of "survivors" is a wonderful network of support. There are 34 women and one man at my church—where I work—who are survivors of breast cancer. We reach out to each other to ask for help and to offer it. That is a hidden blessing of this terrible disease.

So now it is time to put it behind me. Let's see how long it takes for me to truly do that. Thank you all for coming along with me and supporting me so kindly through all of this journey. I'm so lucky to have you here with me.

The Titles I've Inherited

A few months ago, while I was in the midst of chemotherapy, I was driving home with the convertible roof down. I wore a scarf to cover my bald head. As I waited for the light to change, I heard someone shout “Excuse me!” to my right. I turned to see a man a little older than I behind the wheel of a huge one-ton pickup truck. He called to me.

“Are you a survivor?”

I thought for a split second. “Still fighting!”

“You’ll beat it. I did, and you will too.” He smiled and gave me a thumbs-up.

I thanked him as the light turned green, and we both went on our way.

I hear constantly that I am a cancer “fighter.” What a picture: strong, defiant, in control. I don’t feel especially strong, just lucky at how I’m getting through this with so few problems. I am certainly not in control, but I learned some time ago that control is an illusion anyway. Defiant? You bet. I’ll own that one. I am not going gently into that good night. I visualize and pray about healing completely, and I’m making long-term plans.

To be a cancer fighter is actually a passive role: one simply walks from one appointment to the next, waiting only for what the next test reveals, and undergoing treatment as best one can. I can’t say that I’m fighting. Fighting entails facing one’s fears by making choices that entail risk. Cancer treatment certainly has its risks, but it’s not like I have much choice. I’m just walking a path so many have walked before me, many who say “me too” from further down the trail. We have in common the experience of treatment and emotional setbacks and fatigue. Some are fighters, I suppose, but I feel less like a soldier than simply one who soldiers on.

When will I take the title of “survivor?” I’m still in treatment, so I don’t feel I’ve earned it. Technically, as long as I’m alive I’m a survivor. But the term puts everything else in past tense, and I can’t do that yet. I’m not sure when that will happen. As my appearance approaches “normal” again, people will forget I’m in treatment or recovery. They won’t mean to, but it will happen. Normal is good. I can’t wait to feel the same way.

While life continues in its natural rhythms, my cadence follows the beat of cancer. Everything I see, do and feel is experienced through the filter of cancer. Only after my positive prognosis did I begin to hear other music, and it’s lovely. It’s the music of living.

Spectator

Has it really been that long since I've updated? I'm sorry to keep you in the dark about my progress.

When I had to have the throat surgery, I didn't realize what a hit I would take with that news. It took me a while to realize that I was expecting a constant move upward toward healing, and this was a sudden drop. I was angry too that this could have been avoided.

I had a very brief taste of life with a disability. People were kind and helpful everywhere, without exception, but just about everything that called for discussion was more difficult. When I motioned I could not speak, people universally went mute and started gesturing or writing. Even after I would motion clearly that I could hear, they would nod and continue to gesture or write. I would have laughed out loud if I could have. I used a lot of notes.

My speech therapist recommended a $2.00 app called Speakit! for the iPad, and it was very helpful. I was able to type and have my words spoken by a voice of my choosing. Most of the time it was great; occasionally it mangled a word to something unrecognizable. I was able to store text on the iPad so that I could plan ahead for meetings and long conversations. I was even able to use the app on my iPhone, which was handy in restaurants or close conversations. I highly recommend it. (You can purchase voices for other languages and have them speak for you. Write in English, they speak in whatever language you select. Great for traveling!)

Even so, it was awkward for people to wait while I typed or texted. Often the conversation sped ahead and what I wanted to say became moot. It became easier to remain silent. It sure made me crystallize what I really wanted to say. I became more a spectator and less a participant.

What I missed most was being able to laugh, and I only realized that yesterday when I laughed for the first time. (I'm not allowed to whisper or yell, and my laugh is pretty loud.) I'm allowed ten minutes of speech per hour this week. It feels so good to speak again!

Now that my throat is getting better, the effects of radiation are starting to show. It's not good: some get pink skin, some get a rash; I get red skin and a very angry rash. It really hurts, and I have four more weeks to go. (That's two weeks of radiation and two weeks of delayed reaction.) However, I see this treatment prolonging my life, and four weeks of discomfort is something I can handle. Carefully. I have fashioned a one-cup bra that gives me support and won't rub on the affected area, so I'm very pleased with that.

None of this has stopped me from working, although I continue to rest at home. My colleagues have always been cheerfully supportive and helpful.

Abe continues to wait on me hand and foot. He's been the best husband ever through all of this, and I love him dearly for his patience, strength, and tenderness. He has been an anchor for the whole family, all while working about ten hours a day, six days a week. There is no way I can repay him for all that he does except to love him with all my heart. I'm so lucky to have him at my side.

Cross-posted on CaringBridge.org