Yup, it's true. On my birthday I noticed that not only were my eyebrows starting to come in , but my eyelashes have begun to return as well! Not exactly in keeping with my birthday wish lists of years past but certainly able to stir up some excitement this year. I have also noticed some very fine hair starting to cover my bald head. It is not that noticeable yet to the naked eye but if you look at it in a certain light it looks like a halo of sorts (You know, like in Touched by an Angel when the main character would finally tell people, "I am an angel of God." and they would backlight her until she seemed to glow...)
Anyway, it's been a long time since I've written - mostly because there has been so much going on and I've been pretty exhausted, but also because I want to write about everything and that takes time and energy so I have just put it off.
Let me just tell you one story and then I will go back to the beginning and finish my post about radiation...This story takes place in a bank...well two banks to be exact. I have been a rebel. You know those signs they have in banks these days that tell you to remove your hat and sunglasses so that they can film your face in case you plan on robbing the bank? Well, I don't always comply...Bank number one is a PNC bank in my neighborhood that I have been going to for over six years. When I go to make a deposit or cash a check, they are usually very polite and say, "Have a nice day sir." Now I get the whole bald headed thing, and I even realize that men may wear dangling earrings, but come on, I hand them my photo license and my check, etc. has my name on it. Strike one for them.
On the other hand, I have been going to watch Colleen's daughters Becca and Olivia play lacrosse all over the place. One recent evening I had to cash a check and we would not have made it back to my bank before it closed so we went to a local PNC bank (in Warminster, I think). It was a warm day so when I walked into the bank I didn't have my hat on. I witnessed an amazingly friendly staff. There was a tall woman dressed in bright colors - a yellow blouse with lots of beads - who was behind the counter and seemed to be the manager. She was attending to people in the drive up window and she seemed to know everyone. She called people by name and asked about their family, plans for the weekend, etc. The teller didn't seem to know everyone as well but she intentionally chatted and commented on the weather or asked about weekend plans.
I was waiting in line when the manager spotted me and said, "I just have to come around the counter and give you a hug." And so she did. She said, "You keep fighting and know that we're all pulling for you." Or something like that because I was too surprised and speechless to know if I am remembering the conversation verbatim. This genuine act of kindness felt comforting and not intrusive at all. Soon after, a man came in and commented on some renovations that were happening in the branch. The manager said that she had fought for the changes and that it was good for "the team" to see them taking place. She said that all the branches around them were beautiful. The man agreed and said that he could do his banking at any of them but he chose this branch because it was the friendliest. That's all it takes - a few words, a kind act, an expression of empathy - to make all the difference. It certainly made my day and has stayed with me long after. When I went to leave the bank that day, the manager called after me, "Now you stay strong, take care of yourself," and she waved to me. As I waved back I realized that the list of specific strangers that I find myself praying for is getting longer and longer.
Now I will try to update the radiation post so that you can get a sense of that delightful process. Just picture the movie Ground Hog Day (only with a million rads going through you...) but I don't want to spoil the surprise...it should be up in a few days. Enjoy the weather!
Wednesday, April 22, 2009
Sunday, April 5, 2009
The 30 Days of Radiation.....
Hi, just wanted to let you know that I am a couple weeks into radiation and it is sort of like that movie Ground Hog Day with Bill Murray, where he wakes up each morning and relives the same day, - only with a million rads going through me....but I digress...let me start at the beginning....or at least where we left off in the last blog. (Actually, 2 blogs ago...I started writing this in the beginning of April but now it is May 24th....anyway...)
On Tuesday, March 10th, I went to see Dr. Gressen (radiation oncologist), and he discussed the course of treatment. He said that radiation is used in my situation if the tumor is 5 cm or more...so 8.5 cm sort of locked us in. I was "tatooed" (more about that later....) and then had a CT scan. He told me that usually the radiation field includes a portion of the lung but since I had/have pneumonitis he will radiate the least amount of lung that he feels comfortable with without compromising the prognosis.
Now, about the tatooing, what happened to the indelible purple marks that my grandmother had when she had her cobalt treatments? I thought that tatooing was a figure of speech until the tech said, "Okay now, just a bee sting..." Ouch! Followed by several more...(a whole damn hive if you ask me..) I was set to return on Monday, the 16th for a re-check on the markings and my first (of 28) treatment. But wait, if that isn't enough fun, we had to revisit the pelvic ultrasound on Thursday, the 12th. The tech was very nice but it was a little scary when she asked me what an oncologist did "that was different from a surgeon"... I would recommend skipping the pelvic ultrasound whenever possible, and God willing, I will never have another one.
So, Monday the 16th comes and I have an appointment for 2:30 in the afternoon (how many of you thought 2:30 a.m.?) Now I am actually in the radiation treatment area...marked with skull and crossbones...2 foot steel doors and those signs that you may remember seeing if you were a child of the cold war, that marked "air raid shelters" which held canned goods from 1964, to which we would have to flee in case of a "CONALRAD" Alert...can you say "Bay of Pigs?"
Just a little side story, I remember being in first grade and having to go to the gym for an air raid drill. We crouched down with our coats over our heads for what seemed like hours compared to the less scary, relatively painless fire drills. I asked my teacher why we had to put our coats over our heads and she said so we didn't get cut by the flying glass. So I asked her, "Why would the glass be flying?" A reasonable question for a six year old, and she just laughed and told all the other teachers but didn't answer me. The part they had left out so as not to scare us was that if we were in this position it meant that the United States and particularly Union, New Jersey would be under attack and that the glass would be flying because of the bombs...Luckily the nuclear age took over and the Board of Ed realized that they couldn't keep us safe from mushroom clouds so they gave up the whole practice of air raid drills...my friends in California had earthquake drills which consisted of them leaving the school building and running as far away from it as they could. Well, now I've gotten so far away from my story that I don't know where I left off.
Oh yes, the first day of radiation. I had to be checked and scanned again and it was determined that the "first" tatoos were not exactly where the Dr. wanted them to be. This was announced to me over the background music of Karma Chameleon and Walkin on Sunshine...very surreal...and before I knew it another swarm of bees attacked and I had new blue tatoos... and because I had been on the table with my arms over my head in an unnatural position for 45 minutes, it was decided that my first treatment would be delayed another day until the 17th.
My first treatment was fine although there was some anxiety if I let myself think about what was actually happening. The whole thing took about ten minutes and then I saw Dr. Gressen. I will see him once a week. The rest of the treatments took about 5 minutes except when the machine broke...but that was only once...Because this became such a routine, it was interesting to observe such things as - Karma Chameleon and Walkin on Shunshine will always be playing if you arrive at 7:50a.m. (which I tended to do especially because of the parking issue - but don't get me started on that yet...) If you arrive a little later you'll hear Rod Stewart. Unless it's an "all oldies day".
On my first day I didn't know the techs and in my anxiety I said, "You know, in chemo, Thursday is soft pretzel day." To which they replied, "It is here too!" Ahhh continuity... To this day I still cannot force myself to eat a soft pretzel...
The techs were nice, the treatments themselves were quick and painless, and overhead, some of the ceiling tiles were replaced with a beautiful scene of a park in the spring. There were daffodils, and hyacynths, and tulips, and new budding trees and a lake. Off in the distance you could see a gazebo. Since it was early spring I liked seeing all this. I was informed that they didn't change the tiles with the seasons but I liked to imagine what the other season tiles would look like anyway.
It seemed right that I was beginning this phase of treatment in the Spring. Every day when we arrived, we noticed that the trees were flowering and the daffodils were opening just a little more. Soon, I knew that my hair would start growing again. When I worked for the American Cancer Society (right out of college) we all had to be responsible for a fund-raising project regardless of what our position was (I was Director of Service and Rehabilitation). I hate asking for money, even if it is for a good cause, so I thought I would pick a special event. Then I heard about Daffodil Day. Daffodil Day coincides with the first day of Spring and is supposed to be a sign of hope for those going through cancer. So I became the Daffodil Queen and that was my fundraising project each year. So this year when Daffodil Day rolled around I don't know why I was so surprised and touched when I received a bouquet of daffodils upon leaving my treatment that day. It is different being on this side of the hospital gown. My thoughts went back to planning meetings, "Patients will like getting the flowers," "Contact different departments in the hospitals and suggest...."
But now I was the one getting the flowers. Wow. I have cancer. Me. I have cancer. As I walked out of the treatment room to the last notes of Walkin on Sunshine, I realized that the daffodils really do make a difference. There is hope, and I am not alone.
I was not exactly prepared for the extent of the "side effects" of radiation, however. My doctor kept telling me,"You're doing great! You are going to be boring! Etc..." He said that I might feel like I had gotten a bad sunburn. He neglected to tell me that I would have gotten that sunburn without sunscreen, on the equator at noon. And because the effects are cumulative, that the effects would continue for a couple of weeks after treatment was over. I used a cream developed specifically for radiation dermatitis (burns) and it worked well but it took about a month after treatment for the burns to heal. If I had prepared myself for that it wouldn't have been a big deal.
I am set to see Dr. Gressen on May28th, and Dr. Kennedy on June 3rd. I will let you know what is next as soon as I know. I just have one more observation (for now) that I would like to share about the experience of having radiation treatment. If there is anyone out there who is looking to do some research - a master's thesis maybe - I would suggest studying the relationships and patterns of communication that develop among patients traveling this path together.
There are differences in the number of treatments that each person gets depending on the site being radiated and their own particular circumstances, but generally, we travel with the same group of people every day for at least a couple of weeks. At first I just smiled and others would do so too. If I found myself with only one other person in the treatment area we would talk, usually but not always, about our circumstances. If someone was new (and anxious) someone would take them under their wing. By the end of someone's treatment we all knew it. They'd pronounce, "Last week," or "Last day for me!" and we'd all congratulate them or wish them luck. After all we had spent every day for weeks with this person...even if just for a few minutes...even though we did not know, or ask for, each other's first names...And occasionally we would spend a little more time together sharing our stories and we would remember names like Debbie and Larry. But one thing is sure, that on the last day walking out of the treatment room they, and all the others before me as well as those who will come after me, will be in my prayers always. I am blessed beyond measure to have felt and shared the hope and peace that comes with this struggle.
Tune in next week to see a picture of me with peach-fuzz hair. It is white and I feel like I should be joining Sweet Honey in the Rock...(for those of you who don't know the reference, they are an AMAZING Acapella group of African American Women who, as they have aged, have hair that looks like mine (on purpose). If you have never heard them please check them out.)
Bye for now....
On Tuesday, March 10th, I went to see Dr. Gressen (radiation oncologist), and he discussed the course of treatment. He said that radiation is used in my situation if the tumor is 5 cm or more...so 8.5 cm sort of locked us in. I was "tatooed" (more about that later....) and then had a CT scan. He told me that usually the radiation field includes a portion of the lung but since I had/have pneumonitis he will radiate the least amount of lung that he feels comfortable with without compromising the prognosis.
Now, about the tatooing, what happened to the indelible purple marks that my grandmother had when she had her cobalt treatments? I thought that tatooing was a figure of speech until the tech said, "Okay now, just a bee sting..." Ouch! Followed by several more...(a whole damn hive if you ask me..) I was set to return on Monday, the 16th for a re-check on the markings and my first (of 28) treatment. But wait, if that isn't enough fun, we had to revisit the pelvic ultrasound on Thursday, the 12th. The tech was very nice but it was a little scary when she asked me what an oncologist did "that was different from a surgeon"... I would recommend skipping the pelvic ultrasound whenever possible, and God willing, I will never have another one.
So, Monday the 16th comes and I have an appointment for 2:30 in the afternoon (how many of you thought 2:30 a.m.?) Now I am actually in the radiation treatment area...marked with skull and crossbones...2 foot steel doors and those signs that you may remember seeing if you were a child of the cold war, that marked "air raid shelters" which held canned goods from 1964, to which we would have to flee in case of a "CONALRAD" Alert...can you say "Bay of Pigs?"
Just a little side story, I remember being in first grade and having to go to the gym for an air raid drill. We crouched down with our coats over our heads for what seemed like hours compared to the less scary, relatively painless fire drills. I asked my teacher why we had to put our coats over our heads and she said so we didn't get cut by the flying glass. So I asked her, "Why would the glass be flying?" A reasonable question for a six year old, and she just laughed and told all the other teachers but didn't answer me. The part they had left out so as not to scare us was that if we were in this position it meant that the United States and particularly Union, New Jersey would be under attack and that the glass would be flying because of the bombs...Luckily the nuclear age took over and the Board of Ed realized that they couldn't keep us safe from mushroom clouds so they gave up the whole practice of air raid drills...my friends in California had earthquake drills which consisted of them leaving the school building and running as far away from it as they could. Well, now I've gotten so far away from my story that I don't know where I left off.
Oh yes, the first day of radiation. I had to be checked and scanned again and it was determined that the "first" tatoos were not exactly where the Dr. wanted them to be. This was announced to me over the background music of Karma Chameleon and Walkin on Sunshine...very surreal...and before I knew it another swarm of bees attacked and I had new blue tatoos... and because I had been on the table with my arms over my head in an unnatural position for 45 minutes, it was decided that my first treatment would be delayed another day until the 17th.
My first treatment was fine although there was some anxiety if I let myself think about what was actually happening. The whole thing took about ten minutes and then I saw Dr. Gressen. I will see him once a week. The rest of the treatments took about 5 minutes except when the machine broke...but that was only once...Because this became such a routine, it was interesting to observe such things as - Karma Chameleon and Walkin on Shunshine will always be playing if you arrive at 7:50a.m. (which I tended to do especially because of the parking issue - but don't get me started on that yet...) If you arrive a little later you'll hear Rod Stewart. Unless it's an "all oldies day".
On my first day I didn't know the techs and in my anxiety I said, "You know, in chemo, Thursday is soft pretzel day." To which they replied, "It is here too!" Ahhh continuity... To this day I still cannot force myself to eat a soft pretzel...
The techs were nice, the treatments themselves were quick and painless, and overhead, some of the ceiling tiles were replaced with a beautiful scene of a park in the spring. There were daffodils, and hyacynths, and tulips, and new budding trees and a lake. Off in the distance you could see a gazebo. Since it was early spring I liked seeing all this. I was informed that they didn't change the tiles with the seasons but I liked to imagine what the other season tiles would look like anyway.
It seemed right that I was beginning this phase of treatment in the Spring. Every day when we arrived, we noticed that the trees were flowering and the daffodils were opening just a little more. Soon, I knew that my hair would start growing again. When I worked for the American Cancer Society (right out of college) we all had to be responsible for a fund-raising project regardless of what our position was (I was Director of Service and Rehabilitation). I hate asking for money, even if it is for a good cause, so I thought I would pick a special event. Then I heard about Daffodil Day. Daffodil Day coincides with the first day of Spring and is supposed to be a sign of hope for those going through cancer. So I became the Daffodil Queen and that was my fundraising project each year. So this year when Daffodil Day rolled around I don't know why I was so surprised and touched when I received a bouquet of daffodils upon leaving my treatment that day. It is different being on this side of the hospital gown. My thoughts went back to planning meetings, "Patients will like getting the flowers," "Contact different departments in the hospitals and suggest...."
But now I was the one getting the flowers. Wow. I have cancer. Me. I have cancer. As I walked out of the treatment room to the last notes of Walkin on Sunshine, I realized that the daffodils really do make a difference. There is hope, and I am not alone.
I was not exactly prepared for the extent of the "side effects" of radiation, however. My doctor kept telling me,"You're doing great! You are going to be boring! Etc..." He said that I might feel like I had gotten a bad sunburn. He neglected to tell me that I would have gotten that sunburn without sunscreen, on the equator at noon. And because the effects are cumulative, that the effects would continue for a couple of weeks after treatment was over. I used a cream developed specifically for radiation dermatitis (burns) and it worked well but it took about a month after treatment for the burns to heal. If I had prepared myself for that it wouldn't have been a big deal.
I am set to see Dr. Gressen on May28th, and Dr. Kennedy on June 3rd. I will let you know what is next as soon as I know. I just have one more observation (for now) that I would like to share about the experience of having radiation treatment. If there is anyone out there who is looking to do some research - a master's thesis maybe - I would suggest studying the relationships and patterns of communication that develop among patients traveling this path together.
There are differences in the number of treatments that each person gets depending on the site being radiated and their own particular circumstances, but generally, we travel with the same group of people every day for at least a couple of weeks. At first I just smiled and others would do so too. If I found myself with only one other person in the treatment area we would talk, usually but not always, about our circumstances. If someone was new (and anxious) someone would take them under their wing. By the end of someone's treatment we all knew it. They'd pronounce, "Last week," or "Last day for me!" and we'd all congratulate them or wish them luck. After all we had spent every day for weeks with this person...even if just for a few minutes...even though we did not know, or ask for, each other's first names...And occasionally we would spend a little more time together sharing our stories and we would remember names like Debbie and Larry. But one thing is sure, that on the last day walking out of the treatment room they, and all the others before me as well as those who will come after me, will be in my prayers always. I am blessed beyond measure to have felt and shared the hope and peace that comes with this struggle.
Tune in next week to see a picture of me with peach-fuzz hair. It is white and I feel like I should be joining Sweet Honey in the Rock...(for those of you who don't know the reference, they are an AMAZING Acapella group of African American Women who, as they have aged, have hair that looks like mine (on purpose). If you have never heard them please check them out.)
Bye for now....
Subscribe to:
Posts (Atom)