October 3, 2012
Coming Back Soon
Apologies for my prolonged absence. I am emerging from depression, a period in which reaching out or initiating anything was just impossible to consider. I'm getting better, and I'll be back soon.
July 26, 2012
Once-in-a-lifetime Wedding
Last month I had the great pleasure of attending the wedding of someone I had known since he was little, the child of dear friends who attend the same church. This wedding was different and probably once-in-a-lifetime for me. It was the exchange of vows between two transmen.
James (left) and John were married in Chicago in June surrounded by friends and loved ones.
John is acknowledged by his birth state of Illinois to be male and has changed his Illinois state ID and Social Security card to match. James’ California driver’s license has “female” as his legal sex. (He does not want to change his legal sex unless they offer T for transgender.) By marrying in Illinois, the marriage is registered as between bride and groom, thereby being recognized in all 50 states and by the federal government. (BTW: pure genius way to work the system, gentlemen.)
It was a privilege to witness the moving ceremony, and lots of hankies were out for all the right reasons. There was a pall cast briefly over the celebration afterward when James approached to tell me how important it was to him that my husband and I attended.
“You are the only ones of my parents’ friends to attend,” he said.
“I know, sweetheart.”
"Some of them stayed away on purpose.” His blue eyes were bright.
“I know, sweetie, and I’m sorry.”
We hugged and the party went on into the night. John and James are obviously in love and good for each other. I see a peace in James that was not evident for a long time. Love is always something to celebrate.
An announcement appeared on Joe.My.God.
A lightly-edited version of this appears on Bilerico.
James (left) and John were married in Chicago in June surrounded by friends and loved ones.
John is acknowledged by his birth state of Illinois to be male and has changed his Illinois state ID and Social Security card to match. James’ California driver’s license has “female” as his legal sex. (He does not want to change his legal sex unless they offer T for transgender.) By marrying in Illinois, the marriage is registered as between bride and groom, thereby being recognized in all 50 states and by the federal government. (BTW: pure genius way to work the system, gentlemen.)
It was a privilege to witness the moving ceremony, and lots of hankies were out for all the right reasons. There was a pall cast briefly over the celebration afterward when James approached to tell me how important it was to him that my husband and I attended.
“You are the only ones of my parents’ friends to attend,” he said.
“I know, sweetheart.”
"Some of them stayed away on purpose.” His blue eyes were bright.
“I know, sweetie, and I’m sorry.”
We hugged and the party went on into the night. John and James are obviously in love and good for each other. I see a peace in James that was not evident for a long time. Love is always something to celebrate.
An announcement appeared on Joe.My.God.
A lightly-edited version of this appears on Bilerico.
July 16, 2012
July 9, 2012
Spring Break: Helen, Georgia
From Asheville we drove down the Blue Ridge Parkway, a fantastic two-lane road which runs 500 miles through the ridges of the Appalachian Mountains from Shenandoah National Park in Virginia to Smoky Mountain National Park in North Carolina. We just took a tiny portion from Asheville on our way to Helen, GA. It was, of course, beautiful if a bit cool. We had to put the top up on the car when it hit 61° in the clouds.
Ben drove for a while, and I was a tourist for the first time in a long time. I loved it.
Too soon, we had to pull off the parkway to make our way through the lower mountains to Highlands for lunch. It was just a stop this time: pizza on Main St. Highlands continues to change—and get more expensive—each time we visit. We came here every summer for 22 years when my parents would rent a house for a month and invite each of our families to visit. It was wonderful, and it lasted until the summer I had to drive them from Florida and back. That was our last time together in the mountains.
My brother has become the family magnet now, getting all his sisters to come to St. Louis or wherever. That’s why we were heading to Helen, a tiny “alpine” town in northeast Georgia. My parents bought a timeshare there years ago, and my brother is using it now. After many visits to Helen, seeing my brother’s family is about the only reason I’d go again; there’s only so much to do in a one-street town. But “Hiram” (meaning “brother”) and his wife and kids are such fun to be around that I’d go anywhere they are for vacation.
Abe and Hiram could be a vaudeville act when they are together. Hiram is my younger brother by thirteen years, and he was born after my older brother moved out. They never really knew each other at all. But Abe has been in his life since he was five years old, and they act like brothers. It’s always hilarious to be around these two.
While in Helen, we had to stop at my store.
We could stay only a few days, but we did get in a hike to Anna Ruby Falls.
On the way home, we took the route through the Smoky Mountain Park—with the roof down!—and made our traditional stop at the top: Newfound Gap.
I know its proximity makes it easy to access from a lot of cities in the Southeast, but the views explain too why this park is the most-visited national park in the U.S. Wow.
We made it home in one day and had a day to rest before we headed up to Chicago to attend a wedding, one that will probably be the most interesting wedding I will ever attend in my life. And life gets more interesting all the time.
Ben drove for a while, and I was a tourist for the first time in a long time. I loved it.
Too soon, we had to pull off the parkway to make our way through the lower mountains to Highlands for lunch. It was just a stop this time: pizza on Main St. Highlands continues to change—and get more expensive—each time we visit. We came here every summer for 22 years when my parents would rent a house for a month and invite each of our families to visit. It was wonderful, and it lasted until the summer I had to drive them from Florida and back. That was our last time together in the mountains.
My brother has become the family magnet now, getting all his sisters to come to St. Louis or wherever. That’s why we were heading to Helen, a tiny “alpine” town in northeast Georgia. My parents bought a timeshare there years ago, and my brother is using it now. After many visits to Helen, seeing my brother’s family is about the only reason I’d go again; there’s only so much to do in a one-street town. But “Hiram” (meaning “brother”) and his wife and kids are such fun to be around that I’d go anywhere they are for vacation.
Abe and Hiram could be a vaudeville act when they are together. Hiram is my younger brother by thirteen years, and he was born after my older brother moved out. They never really knew each other at all. But Abe has been in his life since he was five years old, and they act like brothers. It’s always hilarious to be around these two.
While in Helen, we had to stop at my store.
We could stay only a few days, but we did get in a hike to Anna Ruby Falls.
On the way home, we took the route through the Smoky Mountain Park—with the roof down!—and made our traditional stop at the top: Newfound Gap.
I know its proximity makes it easy to access from a lot of cities in the Southeast, but the views explain too why this park is the most-visited national park in the U.S. Wow.
We made it home in one day and had a day to rest before we headed up to Chicago to attend a wedding, one that will probably be the most interesting wedding I will ever attend in my life. And life gets more interesting all the time.
July 6, 2012
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.
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.
July 1, 2012
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.
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.
June 24, 2012
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?
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?
June 2, 2012
May 29, 2012
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."
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."
May 28, 2012
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.)
May 20, 2012
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!
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!
April 22, 2012
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.
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.
April 14, 2012
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.
“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.
April 9, 2012
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.
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
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
March 14, 2012
Breathless
I saw my ENT yesterday because my throat was sore in spite of not speaking for a couple of weeks. He worked with my radiation doctor to get me into surgery tomorrow (Thursday). The node that is on my vocal cord has more than doubled in size in two weeks, and he's concerned that it will block my airway if it isn't removed soon. The surgery will call for one overnight stay, and I'll be released Friday morning.
I have to admit this news made me upset. I know: it's such a minor thing compared to all that has been going on. But I was prepared—after the initial shock—for the chemo, the surgery, the radiation. I was not prepared for this. I sat in the lobby of the medical building and texted Abe the news when a friend saw me and called out my name as she walked over. She asked how I was and I burst into tears. I literally cried on her shoulder for a minute. She was there exactly when I needed her. She was very sweet and said all the right things. My family and friends have been a huge source of strength for me.
I do feel better now. Sometimes you just have to cry.
I have to admit this news made me upset. I know: it's such a minor thing compared to all that has been going on. But I was prepared—after the initial shock—for the chemo, the surgery, the radiation. I was not prepared for this. I sat in the lobby of the medical building and texted Abe the news when a friend saw me and called out my name as she walked over. She asked how I was and I burst into tears. I literally cried on her shoulder for a minute. She was there exactly when I needed her. She was very sweet and said all the right things. My family and friends have been a huge source of strength for me.
I do feel better now. Sometimes you just have to cry.
March 7, 2012
The Last Word
Monday I saw my speech therapist. Wait: let me back up and explain WHY I have a speech therapist.
Apparently during mastectomy surgery four weeks ago, the anesthesiologist scarred my right vocal cord when intubating me. (He also left me with a fat lip and a displaced jaw that hurt when eating for a couple of weeks. Yes, I will be addressing this.) Anyway, my vocal cord is getting worse, not better.
A few days ago I stopped talking because my throat hurt and my voice was almost a whisper. I wrote on a card: “Injured throat—I shouldn’t talk. Sorry!” I got some interesting responses. Some spoke louder, but a number of people started gesturing or writing. I would have laughed if I could have, but I’ve since added “But YOU can talk—my hearing is fine.” That has worked much better and earned a lot of smiles. A few people still want to whisper for some reason, though. *sigh*
So now I have a speech therapist. He told me he wants me to continue my silence (“vocal rest”) for six to eight weeks. Six to eight weeks of my husband getting the last word every single time. Abe would be ecstatic if it weren’t for the reason this happened. He’s waited for this opportunity for years. (He continues to be wonderful to me and for me, by the way. Everyone should be this lucky.) I told him to enjoy it while he can.
I’ve been assigned three exercises to do several times a day. I call them “breathe, hum and purr.” I just purred and Sophie jumped up and ran to my side. I think I’ve found a way to call her!
My radiation therapy started today and runs for six weeks (33 daily treatments Monday through Friday), so I will be silent for the duration. The treatment itself is something of a non-event: lie on the table and wait while the machine moves and hums around you. The reactions—if any—usually start two weeks later.
While I continue to scribble short notes everywhere, I await the arrival of my New iPad (yes, that’s what it’s called) on March 16. I type much faster than I write, so I will use it for communication for these two months of silence. I will be presenting the bill for this and all related charges to my anesthesiologist.
Since I can’t talk, I cannot answer the phone down at the Damien Center each Wednesday. I’ve decided to use these Wednesdays to work on my book. I need to think about something besides cancer. This will do my heart good.
February 20, 2012
Pathology And Prognosis
I saw my oncologist this morning, and here's what you and I have been waiting to hear: she gives me a 75% chance of NO recurrence. Here's why:
I have been hit with both barrels of the shotgun with inflammatory breast cancer (everything I read says "rare, aggressive, deadly") that is also triple negative. Each of these is considered pretty lethal on its own. The pathology report showed that the sheet-like tumor in my breast tissue had left cancer cells throughout the tissue—BUT the margins of the tissue were clear by 1 cm. all around. It was contained within the tissue that was extracted. The report showed "significant" size tumors in two of my lymph nodes—BUT they had not pierced the outer walls of the nodes and were thus contained. The best news and a surprise to all was the excellent response to chemo. Triple negative normally does not respond well at all. So "contained" and "responsive" lowered the odds of recurrence considerably.
Radiation should begin in early March, if I can get my right arm to stretch properly. I started a strenuous regimen of physical therapy today. With only two weeks until the start of radiation, my physical therapist said it's a good thing I got a refill on my pain meds. Ow.
To be honest, I wasn't expecting quite this good a prognosis. I knew what good things I had going for me—catching it early, good response to chemo—but until they saw the tissue, no one would know just how good those things were. It was either sheer and incredible dumb luck or God's grace that led me to catch this stuff so early. Five weeks! Five weeks and look how far it had spread. If I had gone to my mammogram when I was supposed to we would have missed it altogether, since IBC is invisible to mammography; and it might not even have been present then. When the pink skin didn't improve after a few weeks, I decided to go and asked for "diagnostic" instead of "screening." I had no idea what IBC was or that I had classic symptoms. Thus began the whirlwind that hasn't stopped yet.
My hair is coming back in! After a couple of false starts, it appears to mean it this time. At one quarter inch it looks really dark, and I still have one spot of short bunny fur, but I’m going to let it all grow and see what happens.
I am so grateful to hear this good news. Damocles' sword still hangs overhead, but the thread holding it just became a strong cord.
I have been hit with both barrels of the shotgun with inflammatory breast cancer (everything I read says "rare, aggressive, deadly") that is also triple negative. Each of these is considered pretty lethal on its own. The pathology report showed that the sheet-like tumor in my breast tissue had left cancer cells throughout the tissue—BUT the margins of the tissue were clear by 1 cm. all around. It was contained within the tissue that was extracted. The report showed "significant" size tumors in two of my lymph nodes—BUT they had not pierced the outer walls of the nodes and were thus contained. The best news and a surprise to all was the excellent response to chemo. Triple negative normally does not respond well at all. So "contained" and "responsive" lowered the odds of recurrence considerably.
Radiation should begin in early March, if I can get my right arm to stretch properly. I started a strenuous regimen of physical therapy today. With only two weeks until the start of radiation, my physical therapist said it's a good thing I got a refill on my pain meds. Ow.
To be honest, I wasn't expecting quite this good a prognosis. I knew what good things I had going for me—catching it early, good response to chemo—but until they saw the tissue, no one would know just how good those things were. It was either sheer and incredible dumb luck or God's grace that led me to catch this stuff so early. Five weeks! Five weeks and look how far it had spread. If I had gone to my mammogram when I was supposed to we would have missed it altogether, since IBC is invisible to mammography; and it might not even have been present then. When the pink skin didn't improve after a few weeks, I decided to go and asked for "diagnostic" instead of "screening." I had no idea what IBC was or that I had classic symptoms. Thus began the whirlwind that hasn't stopped yet.
My hair is coming back in! After a couple of false starts, it appears to mean it this time. At one quarter inch it looks really dark, and I still have one spot of short bunny fur, but I’m going to let it all grow and see what happens.
I am so grateful to hear this good news. Damocles' sword still hangs overhead, but the thread holding it just became a strong cord.
February 7, 2012
Surgery Update
I'm home, after about 30 hours in the hospital. The surgeon was very pleased at the outcome, and I'm feeling pretty good. I still use the pain meds and I'm moving slowly, but I am moving.
My friend is keeping me well cared for and laughing, and that's the best medicine there is. Now I'm supposed to rest for two weeks. Any tips on how that's done?
February 5, 2012
Beach, Bingo, Bishop, Book, and Bald
I had my annual visit to Florida in late January. It’s always good to go home to Sarasota every year, but this trip was especially restorative. While Abe has been just wonderful to me and for me, seeing my family and good friends in a relaxing time was just what I needed.
My sister took me to see Drag Queen Bingo, a weekly show at the local dinner theatre. My cheeks hurt from smiling that night. It was an absolute blast. And get this: I won a bingo game! My prize: hair care products. The hostess—Beneva Fruitville, named for two main streets in Sarasota—was hilarious and kind in her remarks about my obvious condition. I even ended up getting a standing ovation. What a hoot.
The following week I spent a couple of nights in Ft. Lauderdale. My friend Tony twisted some arms to get his actor friends together just for me, to rehearse a reading of his new play, "A Letter From the Bishop." It is a powerful play about marriage equality from the view of gay priests, and I was thrilled to be witness to its inception. I was able to meet for the first time an online friend Tony and I had in common. David, Tony and I had a great time together, and it was all too brief.
On my way home I stopped in Ft. Myers to see my old friend Jack, who always offers supportive wisdom and the occasional swift kick. Interestingly, Jack and Tony independently pushed me to consider that the time has come for me to write a book. Talking with them about this pushed me past the subject of my cancer for the first time in a long time.
The past six months has robbed me of my effectiveness in my advocacy for people who are LGBT. I’ve had to suspend meetings of a supportive group at my church, and I had to cancel the presentation I was to make at a national convention of church educators. It has been truly disheartening to let these go, at least for now. But I don’t have to wait to start thinking about writing a book about Christian acceptance and support for LGBT people. I can work on that in my free time, some of which is coming up after surgery.
Having a renewed sense of purpose has really lifted my spirit. I continue to hear from people whose lives have been changed for the better because of what I’ve written. I am amazed and humbled whenever I hear that, and it reminds me each time how important it is to share the truth of God’s love as I see it. I know I’m not alone, but not many are speaking out. I have the privilege of being heard, so I must continue to speak. And maybe it is time for that book.
Just before I left for vacation, I could see that my hair was starting to come in, just as my eyebrows and lashes had fallen out. My new hair felt like bunny fur, but there was an occasional black wire poking up too. Well, they did say it would be different. This week it became clear that my hair was not coming in at the same rate: the back was getting long—in a relative way—and I had a hair line that was beginning to show, but it was not coming in by my forehead. I had male pattern baldness! No way I was keeping that look, so yesterday I shaved it all off again. (Note: bunny fur is especially difficult to shave.) Back to Bald Birdie until it’s all coming in. I really don’t care all that much any more.
My surgery is tomorrow (Monday) at 1:30 PM. I have no worries about that part; it’s a pretty standard procedure. I know I will struggle with my appearance afterward, but it is something I must face and move through. The day will come when it is no longer an issue.
My dear friend since forever is coming from Florida to baby me and reassure Abe. I’m not sure which job will be harder. Her presence here will be so comforting to us both, as are your continued good wishes and prayers. Thank you all for your encouragement, and keep the laughter coming!
January 9, 2012
A Fond Farewell
I had a visit with my oncologist today. Due to mild neuropathy but otherwise good results from chemo, this week’s treatment will be my last. Any further treatment besides radiation will be determined by the pathology report from February’s surgery. I will see her again about three weeks afterward. If there is the need, we will discuss current clinical trials for IBC at that time. She remains optimistic.
I will be glad to say goodbye to mood swings and, eventually, the corpulence from the steroids. The neuropathy—numbness on the soles of my feet—will fade away in upcoming months. It will be great to close the door on all the side effects of chemotherapy.
Meanwhile, surgery becomes more real to me as it approaches. Perhaps not every woman feels this way, but I am mourning the upcoming loss of my breast. Some breast cancer patients are so eager to remove the life-threatening tissue that nothing else matters. I am eager too, certainly, but there is an emotional cost to me I didn’t fully anticipate. Of course, who really thinks about it unless faced with the inevitability?
I’ve seen the pictures and they are jarring. Is it possible to be ready? I don’t know. You see, for all my ups and downs with weight and aging and childbirth and surgeries, the one thing I’ve always liked about my body is my breasts. Quite frankly, when I was young my “girls” were pretty spectacular. And they’re not so bad now either. Forgive me, but they are my vanity. That will change.
I fully understand that this is small potatoes compared to the big picture of survival and quality of life. Allow me this brief moment to grieve. I have a few more weeks of feeling whole and then it will be time to get over it and move on.
Girls, it’s been great. Wish you both could come along for the rest of the ride, but that’s life. Literally.
Posted in part to CaringBridge.org
I will be glad to say goodbye to mood swings and, eventually, the corpulence from the steroids. The neuropathy—numbness on the soles of my feet—will fade away in upcoming months. It will be great to close the door on all the side effects of chemotherapy.
Meanwhile, surgery becomes more real to me as it approaches. Perhaps not every woman feels this way, but I am mourning the upcoming loss of my breast. Some breast cancer patients are so eager to remove the life-threatening tissue that nothing else matters. I am eager too, certainly, but there is an emotional cost to me I didn’t fully anticipate. Of course, who really thinks about it unless faced with the inevitability?
I’ve seen the pictures and they are jarring. Is it possible to be ready? I don’t know. You see, for all my ups and downs with weight and aging and childbirth and surgeries, the one thing I’ve always liked about my body is my breasts. Quite frankly, when I was young my “girls” were pretty spectacular. And they’re not so bad now either. Forgive me, but they are my vanity. That will change.
I fully understand that this is small potatoes compared to the big picture of survival and quality of life. Allow me this brief moment to grieve. I have a few more weeks of feeling whole and then it will be time to get over it and move on.
Girls, it’s been great. Wish you both could come along for the rest of the ride, but that’s life. Literally.
Posted in part to CaringBridge.org
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