Hello everyone,
I know I need to finish my description of the surgery and post-op fun, but am finding it hard to do so. Some kind of mental block wants to not think about it right now. Am going with my feelings to avoid. I'll get back to it...
I'm doing pretty well, I think. Walking several times a day. Resting. Much TV. Bored but with no energy is what TV's for...can't read for long, can't knit and not make hideous mistakes. Can sit for one to four hours 'til butt gives out. Then get to lie down on back or left side - not on right, of course - my favorite,
Have appointment with doctor tomorrow. Hope to start home afterwards.
Enjoy this gorgeous California summer day! Love to you all!
Wednesday, July 6, 2011
Sunday, July 3, 2011
5 Days Post-Op...Unbelievable! July 3, 2011
Hello Dear Family and Friends,
Hard to believe, but I've had a partial hip replacement done on the right side. Hard to believe just how painful it has been. Debra, Melody and every hip patient I've ever taken care of...I had no idea...no idea. Yesterday, in a room across the hall from me, a really old lady (I've been called "young" with this diagnosis!) cried out when the PTs and nurses helped her stand up on her first day post-op. It's hard not to at least moan out loud.
It's been a fast slow journey:
June 16 - fell in Golfe Juan, France. Made my way 100 yards to friend's apartment to rest and have dinner.
June 17 - June 19 - walked around Antibes, Valbonne, the Cap, Cannes (with car support) to continue vacation and get leg to improve.
June 20 - to French public hospital (a whole story about the hospital and how different than US). Xray shows "pelvic" fracture. We decide to come home.
June 21 - 22: awaiting flights home. Mostly bed rest and wheelchair. Mourned loss of Belgium, and rest of England trip.
June 23: business class flight to London; overnight at Sofitel Hotel at Heathrow.
June 23 - 24: flight to San Francisco. 10 hours, business class with lay-down pods. Most excellent!
June 25: appointment with Dr. Krueger, orthopedic surgeon. He says hip, not pelvis, is broken! Spent the day in radiology at Penninsula Hospital: CT scans, x-rays, bone scan. Surgery set for Tuesday, June 28. No slots before then.
June 26: doc appointments - almost lost in the hip mess is the fact that I am still cancer free! Hard to celebrate right now, but I'm sure it will dawn on me soon. It is great news! Saw oncologist, as well as a primary care doc for pre-op clearance. Also pre-op visits for lab work, EKG and anesthesia. Finished with all this at 5:00 pm. A long day.
June 28: to Penninsula at 12:30 pm for 2:00 surgery. When the time came and went, knew another surgery had gone long. Dr. Krueger visited to say that the films showed that the hip had been moving and that there was reduced blood flow to ball of joint, possibly indicating that the pinning that had been planned would eventually fail and lead to a partial or full hip replacement. He recommended a partial hip replacement now. OK...
Anesthesiologist, Dr. Shaughnrssay, wants to do a spinal anesthesia! No surprise to you, maybe, but I hadn't even considered it. Spinals were on my "no thank you" list of medical procedures. However, with persuasive arguments - like no pain for up to six hours post-op, we agreed.
These days, almost all procedures start with patients in a pre-op holding area. Your operating room awaits, where you meet your scrub nurse, circulating nurse and get to see the instruments laid out for your operation (there are usually hundreds, big and little), the lights, the anesthesia equipment, the huge LCD panels to display vital signs, the x-ray
machines...it can be overwhelming. And, all this with no sedation!
I think I'll pause in this blow-by-blow to get cleaned up for the day. A home health nurse I'd visiting in the hotel room in about an hour. Must be ready.
Hard to believe, but I've had a partial hip replacement done on the right side. Hard to believe just how painful it has been. Debra, Melody and every hip patient I've ever taken care of...I had no idea...no idea. Yesterday, in a room across the hall from me, a really old lady (I've been called "young" with this diagnosis!) cried out when the PTs and nurses helped her stand up on her first day post-op. It's hard not to at least moan out loud.
It's been a fast slow journey:
June 16 - fell in Golfe Juan, France. Made my way 100 yards to friend's apartment to rest and have dinner.
June 17 - June 19 - walked around Antibes, Valbonne, the Cap, Cannes (with car support) to continue vacation and get leg to improve.
June 20 - to French public hospital (a whole story about the hospital and how different than US). Xray shows "pelvic" fracture. We decide to come home.
June 21 - 22: awaiting flights home. Mostly bed rest and wheelchair. Mourned loss of Belgium, and rest of England trip.
June 23: business class flight to London; overnight at Sofitel Hotel at Heathrow.
June 23 - 24: flight to San Francisco. 10 hours, business class with lay-down pods. Most excellent!
June 25: appointment with Dr. Krueger, orthopedic surgeon. He says hip, not pelvis, is broken! Spent the day in radiology at Penninsula Hospital: CT scans, x-rays, bone scan. Surgery set for Tuesday, June 28. No slots before then.
June 26: doc appointments - almost lost in the hip mess is the fact that I am still cancer free! Hard to celebrate right now, but I'm sure it will dawn on me soon. It is great news! Saw oncologist, as well as a primary care doc for pre-op clearance. Also pre-op visits for lab work, EKG and anesthesia. Finished with all this at 5:00 pm. A long day.
June 28: to Penninsula at 12:30 pm for 2:00 surgery. When the time came and went, knew another surgery had gone long. Dr. Krueger visited to say that the films showed that the hip had been moving and that there was reduced blood flow to ball of joint, possibly indicating that the pinning that had been planned would eventually fail and lead to a partial or full hip replacement. He recommended a partial hip replacement now. OK...
Anesthesiologist, Dr. Shaughnrssay, wants to do a spinal anesthesia! No surprise to you, maybe, but I hadn't even considered it. Spinals were on my "no thank you" list of medical procedures. However, with persuasive arguments - like no pain for up to six hours post-op, we agreed.
These days, almost all procedures start with patients in a pre-op holding area. Your operating room awaits, where you meet your scrub nurse, circulating nurse and get to see the instruments laid out for your operation (there are usually hundreds, big and little), the lights, the anesthesia equipment, the huge LCD panels to display vital signs, the x-ray
machines...it can be overwhelming. And, all this with no sedation!
I think I'll pause in this blow-by-blow to get cleaned up for the day. A home health nurse I'd visiting in the hotel room in about an hour. Must be ready.
Saturday, June 25, 2011
A Vacation Gone Awry - June 26, 2011
Hello dear family and friends,
It's Saturday on one of two days that Jim and I were to be watching Wimbledon live in England. Instead I'm sitting in a hotel room in Burlingame near SFO watching tennis on TV. It's not because it's really better on TV...it's because I broke my hip on June 16 while strolling home from grocery shopping in Golfe Juan, France (on the Cote d' Azur/French Riveria). On our first day, I fell after tripping on a 3" curb...and the end result is this current mess! Totally not fair!!!
You all know that getting back on my feet after 3 surgeries, chemotherapy and radiation throughout most of last year has been hard. Very slowly, my strength has returned and I've been able to work about half time, walk, take care of my self and do a few things around the house. This trip was to have been 27 days, mostly in England, with brief stops in the south of France and a couple of days In Bruges, Belgium. We made our plane reservations in January, for pity sake!
Typical of the know-it-all nurse that I am, I was convinced that my injuries were simple bruises. A small cut on my head quickly resolved into a big egg, tender only to the touch.
My right arm hurt quite a bit for the first couple of days and bruised rather dramatically, but had good range of motion and improved pretty quickly.
My right hip/butt/groin area, however, was painful with some bruising and difficulty with weight bearing. I had good movement - could lift and flex/extend at the knee, my foot was OK, no real quad pain...just that nagging achy, burning pain at the top of my hip in the front.
My decision was to see how it went over a couple of days...after all, a bruise would begin to resolve and improve, right? Our friends,Paddy and Annemarie, were able to find a car to haul us around and we saw beautiful Antibes and its great outdoor market, ate lunch in the village square and watched people. I walked to and from the car drop-off points and by the end of the day was pretty wiped out with pain and a tired body.
The next two days continued much the same - cafe (tea for me - still can't stand the idea of coffee!) and croissants near the beach, village travels, Cannes from the car, and more. If you haven't been to the south of France, you won't believe how gorgeous it is...truly a feast for the eyes, ears, nose and taste buds. And, the wealth concentrated there is just mind boggling! Super yachts built for more than $1 million per foot! Reality is very different for those folks, truly.
After three days in which my leg did not improve, I decided (with Jim's "you will go" support) to go to see a doc. Knowing nothing about the French medical system, we relied on advice from our friends and their friends. We went to the local hospital emergency department in Antibes - guess what? Some things don't change world-wide: it took about three hours from registration to decisions. The doctor, who I had been assured spoke English, told me my "pelvis" was broken and that I would need surgery "not today, but maybe one or two days.". My response, and Jim's, was "send us home."
The doctor tried to impress us with the danger of going home to the US...deep vein thrombosis, continued pain, other issues. We said "we're going home." The doctor wrote prescriptions for pain and anti-inflammatory meds, crutches, and started me on anti-coagulants injections. "You will need a nurse to give the injections," he said. "I am a nurse," I said.
After signing out against medical advice, we headed back to our flat to make flight arrangements and to figure out who, really, would give me the shots. We called my oncologist, made sure the meds were OK, got travel arranged and felt pretty ready to head home.
Those of you who know me know that since 11 years of age, I have been terrified of needles coming my way. I can give shots, draw blood, start IVs, etc. on other people...just don't come at me with the same. How ever, there's nothing like months of medical care to get you over all that squeamishness! While not quite ready to give myself shots, I would have figured a way to do it...if my so excellent and wonderful Jim wasn't by my side. He's turned into a great shot giver - abdominal site and all. I truly don't know what I'd do without him!
So...we're home - rather, we're in the Bay area. We saw an orthopedic surgeon yesterday, who told us that my pelvis wasn't broken! Hooray!! Jim and I put our hands in the air and high-fived. "Unfortunately," he said, "it's worse. You've fractured your hip." And, he showed us on the films we brought back from France. DISAPPOINTED!!!
The rest of yesterday was spent getting tests - CT scans of chest and abdomen (for cancer surveillance, due now anyhow), and pelvis, along with repeat x-rays of the pelvis and a full bone scan (again both fracture and cancer surveillance). After we'd left the hospital here, we got called back for an x-ray of my right elbow which lit up like a Christmas tree on the bone scan. We'll learn what that's about come Monday, I suspect.
Surgery happens on Tuesday afternoon. Til then, I am not allowed to bear weight on my right leg. The doc was incredibly surprised that I could tolerate waling those first few days - and in retrospect, so am I. Who knew? It didn't cross my mind that I'd broken my hip.
The surgery itself will be a pining, rather than a hip replacement. We're hoping that the blood supply to the "ball" portion of my femur is not disrupted...and that it will heal without necrosis (dying of the bone). If it does, I end up with my own bone healed and good to go in something like six to eight weeks (the best outcome). If not, I will need more surgery and a full or partial hip replacement. What do you think? Given what happened last year, should we take bets about how my luck will hold for this challenge? We have our fingers crossed for the best outcome, of course.
After surgery, there will be a follow-up doc appointment at one week post-op. Our plans are to stay here in the Bay area through July 6, hoping that we can go home after that.
That's the sad tale of our long awaited vacation to Europe. We didn't enjoy it as much as we thought we would, needless to say. Are there lessons? Watch your feet when walking on cobbled, uneven roads, especially if you have a "falling" history like me. Have a couple of glasses of wine before you fall...you might bounce better. Enjoy every single day to the max - the next one might not be as fabulous!
A note: writing my blog on my iPad doesn't lend itself so much to editing. The screen doesn't scroll properly. I've tried to fix the boo-boos. Please forgive those I've missed.
Much love to all of you! More soon...honest! :)
It's Saturday on one of two days that Jim and I were to be watching Wimbledon live in England. Instead I'm sitting in a hotel room in Burlingame near SFO watching tennis on TV. It's not because it's really better on TV...it's because I broke my hip on June 16 while strolling home from grocery shopping in Golfe Juan, France (on the Cote d' Azur/French Riveria). On our first day, I fell after tripping on a 3" curb...and the end result is this current mess! Totally not fair!!!
You all know that getting back on my feet after 3 surgeries, chemotherapy and radiation throughout most of last year has been hard. Very slowly, my strength has returned and I've been able to work about half time, walk, take care of my self and do a few things around the house. This trip was to have been 27 days, mostly in England, with brief stops in the south of France and a couple of days In Bruges, Belgium. We made our plane reservations in January, for pity sake!
Typical of the know-it-all nurse that I am, I was convinced that my injuries were simple bruises. A small cut on my head quickly resolved into a big egg, tender only to the touch.
My right arm hurt quite a bit for the first couple of days and bruised rather dramatically, but had good range of motion and improved pretty quickly.
My right hip/butt/groin area, however, was painful with some bruising and difficulty with weight bearing. I had good movement - could lift and flex/extend at the knee, my foot was OK, no real quad pain...just that nagging achy, burning pain at the top of my hip in the front.
My decision was to see how it went over a couple of days...after all, a bruise would begin to resolve and improve, right? Our friends,Paddy and Annemarie, were able to find a car to haul us around and we saw beautiful Antibes and its great outdoor market, ate lunch in the village square and watched people. I walked to and from the car drop-off points and by the end of the day was pretty wiped out with pain and a tired body.
The next two days continued much the same - cafe (tea for me - still can't stand the idea of coffee!) and croissants near the beach, village travels, Cannes from the car, and more. If you haven't been to the south of France, you won't believe how gorgeous it is...truly a feast for the eyes, ears, nose and taste buds. And, the wealth concentrated there is just mind boggling! Super yachts built for more than $1 million per foot! Reality is very different for those folks, truly.
After three days in which my leg did not improve, I decided (with Jim's "you will go" support) to go to see a doc. Knowing nothing about the French medical system, we relied on advice from our friends and their friends. We went to the local hospital emergency department in Antibes - guess what? Some things don't change world-wide: it took about three hours from registration to decisions. The doctor, who I had been assured spoke English, told me my "pelvis" was broken and that I would need surgery "not today, but maybe one or two days.". My response, and Jim's, was "send us home."
The doctor tried to impress us with the danger of going home to the US...deep vein thrombosis, continued pain, other issues. We said "we're going home." The doctor wrote prescriptions for pain and anti-inflammatory meds, crutches, and started me on anti-coagulants injections. "You will need a nurse to give the injections," he said. "I am a nurse," I said.
After signing out against medical advice, we headed back to our flat to make flight arrangements and to figure out who, really, would give me the shots. We called my oncologist, made sure the meds were OK, got travel arranged and felt pretty ready to head home.
Those of you who know me know that since 11 years of age, I have been terrified of needles coming my way. I can give shots, draw blood, start IVs, etc. on other people...just don't come at me with the same. How ever, there's nothing like months of medical care to get you over all that squeamishness! While not quite ready to give myself shots, I would have figured a way to do it...if my so excellent and wonderful Jim wasn't by my side. He's turned into a great shot giver - abdominal site and all. I truly don't know what I'd do without him!
So...we're home - rather, we're in the Bay area. We saw an orthopedic surgeon yesterday, who told us that my pelvis wasn't broken! Hooray!! Jim and I put our hands in the air and high-fived. "Unfortunately," he said, "it's worse. You've fractured your hip." And, he showed us on the films we brought back from France. DISAPPOINTED!!!
The rest of yesterday was spent getting tests - CT scans of chest and abdomen (for cancer surveillance, due now anyhow), and pelvis, along with repeat x-rays of the pelvis and a full bone scan (again both fracture and cancer surveillance). After we'd left the hospital here, we got called back for an x-ray of my right elbow which lit up like a Christmas tree on the bone scan. We'll learn what that's about come Monday, I suspect.
Surgery happens on Tuesday afternoon. Til then, I am not allowed to bear weight on my right leg. The doc was incredibly surprised that I could tolerate waling those first few days - and in retrospect, so am I. Who knew? It didn't cross my mind that I'd broken my hip.
The surgery itself will be a pining, rather than a hip replacement. We're hoping that the blood supply to the "ball" portion of my femur is not disrupted...and that it will heal without necrosis (dying of the bone). If it does, I end up with my own bone healed and good to go in something like six to eight weeks (the best outcome). If not, I will need more surgery and a full or partial hip replacement. What do you think? Given what happened last year, should we take bets about how my luck will hold for this challenge? We have our fingers crossed for the best outcome, of course.
After surgery, there will be a follow-up doc appointment at one week post-op. Our plans are to stay here in the Bay area through July 6, hoping that we can go home after that.
That's the sad tale of our long awaited vacation to Europe. We didn't enjoy it as much as we thought we would, needless to say. Are there lessons? Watch your feet when walking on cobbled, uneven roads, especially if you have a "falling" history like me. Have a couple of glasses of wine before you fall...you might bounce better. Enjoy every single day to the max - the next one might not be as fabulous!
A note: writing my blog on my iPad doesn't lend itself so much to editing. The screen doesn't scroll properly. I've tried to fix the boo-boos. Please forgive those I've missed.
Much love to all of you! More soon...honest! :)
Monday, March 7, 2011
Where Have I Been? Second Edition March 7, 2011
Hello dear family and friends,
Although I didn't intend to stop writing to let you know how things are going, it's actually somewhat of a good sign that it's been so busy that I haven't had time to sit down to do this. I just finished reading the blog of a friend of a friend who has lung cancer and the light went on...I should write to you all! My apologies for the giant gap in communication.
So here I am, actually feeling quite well. Hooray! About mid-January, I stopped needing a nap most every day. Better yet, near the end of February I got a clear mammogram and ultrasound (I call them 1/2 mammo and 1/2 ultrasound, since there is only one side now. Not half price, however). Also had lab work done and am no longer anemic - yeah! That's where the energy is coming from. My radiation oncologist says my skin is fine. And, I finally got this lousy cough diagnosed (recurrence of asthma, coughing since October) and am on meds to treat. It's much better!
That's the health stuff - every thing's looking good and I'm feeling better. Here's what's still recovering from the slash, poison, burn regime of 2010: easily tiring, low appetite and strange tastebuds (have now lost 30+ pounds and have about 10 to go), fingernails that are still recovering from chemo (ugly) and peripheral neuropathy mainly in feet and right fingers. I'm told the neuropathy may or may not go away (it's from chemo, too), but my left fingers are much better so I have hope that all will gradually recede.
BTW: I have hair on my head (and most other places which I could have done without). I didn't get either of my two wishes: I wanted color any color, but it's white again/still. I wanted curls and so far it's a combination of straight and wavy. It's only 3/4 of an inch long, so maybe other changes will come...the bottomline is whatever color or texture, I'm glad to have hair again.
Jim and I took a few days in late January to go to Hawaii. We really took it easy - mostly because of my energy level - and did virtually nothing but laze around. I discovered that a mai tai every day was delicious and by the end of a few days I was able to finish a whole one...to Jim's dismay! The sun was good, good, good - we were so in need of warm, lazy days. It was perfect.
Since Hawaii, we've had two one-day retreats at the Requa Inn in Klamath. It's about 25 minutes from home and we've loved the super comfortable river view rooms and most excellent food prepared for the winemakers' dinners. We highly recommend this wonderful Inn - even if you live nearby as we do. It is very casual, peaceful and run by our wonderful friends who take great care of every guest.
We have our minds on travel, as you can see. We felt very deprived last year and are hoping for several small and larger trips this year. At this time, we have another Requa Inn overnight planned and almost a month in England and surrounds planned for June. Can't wait!
In between travel for medical check-ups and fun, Jim and I are working, dealing with the never-ending rain (actually a good thing), enjoying our house and thinking about yard work and gardens soon to come. I feel so glad to be through treatments and grateful that healing is happening.
A group of wonderful women gathered me in through this last year - they all walked the same path with breast cancer and shared many war stories and laughs as they helped me along. Now, there is a new member of our group (the club no one ever asked to be a member of) starting her journey...and we are beginning the process of holding and supporting her along the way. I want to do for her what the others did for me - among other things, each woman has reminded me that getting through the treatments is possible and that surviving/thriving happens.
An amazing thing - When you are diagnosed with breast cancer, suddenly women that I've known (or not) came forward to say "I had breast cancer too." Twenty years ago, eleven years ago, five years ago, last year. I never knew there were so many of us quietly going about life. There is a sisterhood out there and they came forward quietly to say "how can I help?" Believe me, just knowing you are there helps! And, so many people gave the same love, information and support to Jim, too. It was all really important.
I hope you too are looking forward to Spring as we are. I hope you are well, that your families and friends are well. And, I hope you get your sunny, warm, lazy days in whatever fashion you prefer them.
I will try not to be so long between posts. I do love hearing from you all.
Although I didn't intend to stop writing to let you know how things are going, it's actually somewhat of a good sign that it's been so busy that I haven't had time to sit down to do this. I just finished reading the blog of a friend of a friend who has lung cancer and the light went on...I should write to you all! My apologies for the giant gap in communication.
So here I am, actually feeling quite well. Hooray! About mid-January, I stopped needing a nap most every day. Better yet, near the end of February I got a clear mammogram and ultrasound (I call them 1/2 mammo and 1/2 ultrasound, since there is only one side now. Not half price, however). Also had lab work done and am no longer anemic - yeah! That's where the energy is coming from. My radiation oncologist says my skin is fine. And, I finally got this lousy cough diagnosed (recurrence of asthma, coughing since October) and am on meds to treat. It's much better!
That's the health stuff - every thing's looking good and I'm feeling better. Here's what's still recovering from the slash, poison, burn regime of 2010: easily tiring, low appetite and strange tastebuds (have now lost 30+ pounds and have about 10 to go), fingernails that are still recovering from chemo (ugly) and peripheral neuropathy mainly in feet and right fingers. I'm told the neuropathy may or may not go away (it's from chemo, too), but my left fingers are much better so I have hope that all will gradually recede.
BTW: I have hair on my head (and most other places which I could have done without). I didn't get either of my two wishes: I wanted color any color, but it's white again/still. I wanted curls and so far it's a combination of straight and wavy. It's only 3/4 of an inch long, so maybe other changes will come...the bottomline is whatever color or texture, I'm glad to have hair again.
Jim and I took a few days in late January to go to Hawaii. We really took it easy - mostly because of my energy level - and did virtually nothing but laze around. I discovered that a mai tai every day was delicious and by the end of a few days I was able to finish a whole one...to Jim's dismay! The sun was good, good, good - we were so in need of warm, lazy days. It was perfect.
Since Hawaii, we've had two one-day retreats at the Requa Inn in Klamath. It's about 25 minutes from home and we've loved the super comfortable river view rooms and most excellent food prepared for the winemakers' dinners. We highly recommend this wonderful Inn - even if you live nearby as we do. It is very casual, peaceful and run by our wonderful friends who take great care of every guest.
We have our minds on travel, as you can see. We felt very deprived last year and are hoping for several small and larger trips this year. At this time, we have another Requa Inn overnight planned and almost a month in England and surrounds planned for June. Can't wait!
In between travel for medical check-ups and fun, Jim and I are working, dealing with the never-ending rain (actually a good thing), enjoying our house and thinking about yard work and gardens soon to come. I feel so glad to be through treatments and grateful that healing is happening.
A group of wonderful women gathered me in through this last year - they all walked the same path with breast cancer and shared many war stories and laughs as they helped me along. Now, there is a new member of our group (the club no one ever asked to be a member of) starting her journey...and we are beginning the process of holding and supporting her along the way. I want to do for her what the others did for me - among other things, each woman has reminded me that getting through the treatments is possible and that surviving/thriving happens.
An amazing thing - When you are diagnosed with breast cancer, suddenly women that I've known (or not) came forward to say "I had breast cancer too." Twenty years ago, eleven years ago, five years ago, last year. I never knew there were so many of us quietly going about life. There is a sisterhood out there and they came forward quietly to say "how can I help?" Believe me, just knowing you are there helps! And, so many people gave the same love, information and support to Jim, too. It was all really important.
I hope you too are looking forward to Spring as we are. I hope you are well, that your families and friends are well. And, I hope you get your sunny, warm, lazy days in whatever fashion you prefer them.
I will try not to be so long between posts. I do love hearing from you all.
Friday, January 14, 2011
A Mixed Message January 11 and January 14, 2011
Here we are on the other side of 2010, digging in to the reality of this new year. There are already things to celebrate - including one that will be perhaps a bit obscure to some of you, though it makes me smile.
Last year, before 2010 blew up for me, I had the privilege of working with two local park associations to help them work/think through the possibility of merging their organizations. The associations had already begun the work - they had a small group of board members from each organization ready to meet to discuss the pros and cons of the effort and had agreed about the importance of really exploring this big change. All they needed was a neutral party to help them organize the discussion, ask the hard questions and stay on track to reach a decision. I was lucky enough to be that neutral party for their initial discussions.
On January 11 the Daily Triplicate - our local newspaper - printed a front page article about the culmination of those discussions. Where there were two organizations doing much the same work, there is now one. Where there were two boards of directors, there is now one. Where there were two similar visions and missions, there is now one and it's focused on helping the local state and national parks in our magnificent corner of the world.
Although I was only able to work on this project for a few early months, I am crazy proud to have been a part of it. These excellent, focused people have accomplished a small and wonderful thing that will, I truly believe, make a difference to these parks and the thousands of visitors that enjoy them every year. And this small miracle was accomplished in a desperate state budget situation where many organizations are struggling to keep their piece of the "pie," instead of coming together in a common sense way to view the work differently.
The example of this merger is, for me, a shining juxtaposition to what happened in Tuscon over this past weekend. It may seem like a big jump in brain work (which I have been known for) to go from a successful local organization merger to national sadness about the tragic deaths and injuries of so many people, but I believe they are related in fundamental ways. In one case, a new, shiny and good thing emerged from lots of talk, compromise and relationship building. In the other, people lost their lives because an isolated (and mentally ill?) person short-circuited opportunities for talk, compromise and relationship building. While most of us will never - thank God - use a gun to express our opinions, there are still aspects of the Tuscon tragedy that reflect disturbing trends among us.
I don't understand how we've moved so far apart that many of us are unable to listen to others, that so many of us seem to have highly personally negative opinions of people who don't agree with us, that so many of us are absolutely positive in the 'rightness' of our beliefs and the 'wrongness' of others. I know that we have always been a nation of folks with strongly held opinions. I just wonder when we came to believe that 'we' are so perfectly right that respectful listening has turned into opportunities to gather cynical insight into how 'they' think. I wonder when we became so polarized that there is no room for respectful discourse, for enlightened discussion, for compromise and caring.
I grew up in a world where strongly held opinions were frequently expressed at loud volumes - whether about the latest kid mistake (there were more than enough) or political events. I learned to be very quiet and to listen - in fact, I learned not to participate and to actually hate the kind of heated, out of control debate that politics often engenders. In these settings, I have always felt most comfortable in the listen and don't participate mode, but I also have felt a little like something was wrong with me because I didn't want to dig in and express my own strongly held opinions.
I've always worked in systems to make change...calmly, in an organized manner, with thoughtful debate about potential outcomes and solutions. Lots can be accomplished this way. The parks association merger is a great example. After what happened in Tuscon, I believe more and more that we must all find calm, open and appreciative places to listen, discuss, work together and change. We have to move back from the brinkmanship and the terribly nasty word-slinging that has become today's trademark. What do we gain with all the mud and negative verbal energy? How does it help us come together to shape our lives, communities and nations?
At the Phoenix memorial for the dead and injured on Wednesday evening, President Obama spoke a moving tribute for us to consider. Here are a couple of particularly key points he made:
"But at a time when our discourse has become so sharply polarized — at a time when we are far too eager to lay the blame for all that ails the world at the feet of those who happen to think differently than we do — it's important for us to pause for a moment and make sure that we're talking with each other in a way that heals, not in a way that wounds...
As we discuss these issues, let each of us do so with a good dose of humility. Rather than pointing fingers or assigning blame, let's use this occasion to expand our moral imaginations, to listen to each other more carefully, to sharpen our instincts for empathy and remind ourselves of all the ways that our hopes and dreams are bound together...
The loss of these wonderful people should make every one of us strive to be better. To be better in our private lives, to be better friends and neighbors and coworkers and parents. And if, as has been discussed in recent days, their death helps usher in more civility in our public discourse, let us remember it is not because a simple lack of civility caused this tragedy — it did not — but rather because only a more civil and honest public discourse can help us face up to the challenges of our nation in a way that would make them proud."
Those of you that know how much I hate politics and political debate - for the reasons above - also know that I have thought about this blog long and hard. I hate to be preached at and I don't like preaching...but this seems like such an important full stop in our busy worlds, a place I've really needed to think about business as usual and what that means today. I've decided that I need to re-resolve to listen, to try to hear, to try to understand others' points of view...even if I never fully agree. I need to remember that we all have strongly held opinions and that sometimes hearing opens up areas for compromise. I need to do my part to solve problems and not just create more divergence. I hope you'll think about it, too.
We each have the opportunity to make our worlds a tiny bit better every day. Lots of tiny bits make for big change over time. I'm going to keep trying.
"If we have no peace, it is because we have forgotten that we belong to each other." Mother Teresa
BTW: on the cancer-free front, I'm getting better every day. I realized yesterday that I actually spent each and every day this week with my head above parallel to the ground (I didn't have to nap). I know it seems silly to feel like this is an accomplishment, but when you've had to stop and nap virtually every day for the past nine months, it's progress. I do still sleep 10 - 11 hours most nights, however. Radiation skin has almost gone...hooray!
I hope you are all well and enjoying these first few weeks of 2011. I'm still convinced this is going to be a fine year!
Last year, before 2010 blew up for me, I had the privilege of working with two local park associations to help them work/think through the possibility of merging their organizations. The associations had already begun the work - they had a small group of board members from each organization ready to meet to discuss the pros and cons of the effort and had agreed about the importance of really exploring this big change. All they needed was a neutral party to help them organize the discussion, ask the hard questions and stay on track to reach a decision. I was lucky enough to be that neutral party for their initial discussions.
On January 11 the Daily Triplicate - our local newspaper - printed a front page article about the culmination of those discussions. Where there were two organizations doing much the same work, there is now one. Where there were two boards of directors, there is now one. Where there were two similar visions and missions, there is now one and it's focused on helping the local state and national parks in our magnificent corner of the world.
Although I was only able to work on this project for a few early months, I am crazy proud to have been a part of it. These excellent, focused people have accomplished a small and wonderful thing that will, I truly believe, make a difference to these parks and the thousands of visitors that enjoy them every year. And this small miracle was accomplished in a desperate state budget situation where many organizations are struggling to keep their piece of the "pie," instead of coming together in a common sense way to view the work differently.
The example of this merger is, for me, a shining juxtaposition to what happened in Tuscon over this past weekend. It may seem like a big jump in brain work (which I have been known for) to go from a successful local organization merger to national sadness about the tragic deaths and injuries of so many people, but I believe they are related in fundamental ways. In one case, a new, shiny and good thing emerged from lots of talk, compromise and relationship building. In the other, people lost their lives because an isolated (and mentally ill?) person short-circuited opportunities for talk, compromise and relationship building. While most of us will never - thank God - use a gun to express our opinions, there are still aspects of the Tuscon tragedy that reflect disturbing trends among us.
I don't understand how we've moved so far apart that many of us are unable to listen to others, that so many of us seem to have highly personally negative opinions of people who don't agree with us, that so many of us are absolutely positive in the 'rightness' of our beliefs and the 'wrongness' of others. I know that we have always been a nation of folks with strongly held opinions. I just wonder when we came to believe that 'we' are so perfectly right that respectful listening has turned into opportunities to gather cynical insight into how 'they' think. I wonder when we became so polarized that there is no room for respectful discourse, for enlightened discussion, for compromise and caring.
I grew up in a world where strongly held opinions were frequently expressed at loud volumes - whether about the latest kid mistake (there were more than enough) or political events. I learned to be very quiet and to listen - in fact, I learned not to participate and to actually hate the kind of heated, out of control debate that politics often engenders. In these settings, I have always felt most comfortable in the listen and don't participate mode, but I also have felt a little like something was wrong with me because I didn't want to dig in and express my own strongly held opinions.
I've always worked in systems to make change...calmly, in an organized manner, with thoughtful debate about potential outcomes and solutions. Lots can be accomplished this way. The parks association merger is a great example. After what happened in Tuscon, I believe more and more that we must all find calm, open and appreciative places to listen, discuss, work together and change. We have to move back from the brinkmanship and the terribly nasty word-slinging that has become today's trademark. What do we gain with all the mud and negative verbal energy? How does it help us come together to shape our lives, communities and nations?
At the Phoenix memorial for the dead and injured on Wednesday evening, President Obama spoke a moving tribute for us to consider. Here are a couple of particularly key points he made:
"But at a time when our discourse has become so sharply polarized — at a time when we are far too eager to lay the blame for all that ails the world at the feet of those who happen to think differently than we do — it's important for us to pause for a moment and make sure that we're talking with each other in a way that heals, not in a way that wounds...
As we discuss these issues, let each of us do so with a good dose of humility. Rather than pointing fingers or assigning blame, let's use this occasion to expand our moral imaginations, to listen to each other more carefully, to sharpen our instincts for empathy and remind ourselves of all the ways that our hopes and dreams are bound together...
The loss of these wonderful people should make every one of us strive to be better. To be better in our private lives, to be better friends and neighbors and coworkers and parents. And if, as has been discussed in recent days, their death helps usher in more civility in our public discourse, let us remember it is not because a simple lack of civility caused this tragedy — it did not — but rather because only a more civil and honest public discourse can help us face up to the challenges of our nation in a way that would make them proud."
Those of you that know how much I hate politics and political debate - for the reasons above - also know that I have thought about this blog long and hard. I hate to be preached at and I don't like preaching...but this seems like such an important full stop in our busy worlds, a place I've really needed to think about business as usual and what that means today. I've decided that I need to re-resolve to listen, to try to hear, to try to understand others' points of view...even if I never fully agree. I need to remember that we all have strongly held opinions and that sometimes hearing opens up areas for compromise. I need to do my part to solve problems and not just create more divergence. I hope you'll think about it, too.
We each have the opportunity to make our worlds a tiny bit better every day. Lots of tiny bits make for big change over time. I'm going to keep trying.
"If we have no peace, it is because we have forgotten that we belong to each other." Mother Teresa
BTW: on the cancer-free front, I'm getting better every day. I realized yesterday that I actually spent each and every day this week with my head above parallel to the ground (I didn't have to nap). I know it seems silly to feel like this is an accomplishment, but when you've had to stop and nap virtually every day for the past nine months, it's progress. I do still sleep 10 - 11 hours most nights, however. Radiation skin has almost gone...hooray!
I hope you are all well and enjoying these first few weeks of 2011. I'm still convinced this is going to be a fine year!
Thursday, December 30, 2010
Happy, Happy, Happy December 30, 2010
HAPPY! HAPPY! HAPPY! HAPPY! HAPPY! HAPPY! HAPPY! HAPPY NEW YEAR!
I'm sitting in my office at home writing to my family and friends, slightly more than one day before 2011 begins, and I don't think I've been happier or more relieved to see the new year arrive. Last Wednesday, December 22, was my last radiation treatment and that little statement means that I am finished with what Jim so politely calls my "slash, poison and burn" treatment regime.
I cannot tell you how good being "finished" feels! There were times during these past eight months that the tunnel looked long and longer. Each segment of this odyssey has had its own particularly nasty characteristics, which I'm sure were specially tailored to my own special personality and quirks.
I used to be terrified of surgery and anesthesia - leftovers from an early and very different (medically) eye surgery as a child. The anesthesia options are much better now and, of course, there are totally new philosophies and drugs for pain. And yet, my fears at the time of surgery were around dealing with the post-op unknowns: How much pain? What will the dressings be like? You mean I have to deal with those drains? For all of these questions, Jim was actually the answer. He made sure I got the fluids I needed, emptied the drains until I could face them, made sure I walked and took medicine when I needed it. After a total of three surgeries, we both had the routine down. We began to take a "yah, yah, what's next?" approach...not really.
My initial knowledge and expectations of chemotherapy were all based on what I learned as a hospital-based oncology nurse...thirty plus years ago. Believe it or not, we used some of the same drugs then - and I received two of them as part of my treatment course. What I remember is, of course, the incredible nausea, diarrhea and misery that our patients experienced. We would do our best with pain and anti-nausea meds, but they were so much less effective than they are today. Women with breast cancer would bravely hold out their arms to have the IV placed - and then hold the emesis (throw-up) basin for hours as the chemo did its work. My hats (and I have quite a few now) go off to every woman and man who subscribed to and completed their courses of treatment during those days! Talk about courage and will to live!
I believed the doctors and nurses who told me that my chemo treatments would be easier than in the old days - and they were. I didn't actually vomit once! I didn't have much diarrhea - and I think what I did experience may have been at least partly my fault (I got plenty of education about the likelihood of constipation...so, I made sure I had plenty of laxative help to avoid it. Live and learn, right?)
There is, however, a big difference between not experiencing the expected vomiting of chemo and having a wonderful, no worries round of treatment. There are lots of nuances to the phrase "easier than." For me, the biggest issues became my lack of appetite and lack of energy. It's easy to say, "just eat something," or "go for a walk," but it can be really hard to actually do those things. Some of the medications that are given to offset nausea and vomiting actually made me sleep and sleep. Then, when the heavy duty nausea meds and steroids (given before, during and a couple of days after treatment) wore off, I experienced a 'valley' of miserableness. No energy, no appetite and/or slight nausea, aching muscles and joints - all of which lasted until a few days before the next treatment cycle. You get the idea. I would just start to feel better and it would be time for another treatment.
And, radiation. The 'burn' portion of my treatment plan was just weird and hard because Jim and I were apart for six weeks. We have developed ways of coping with business travel over our years together, but this was the longest time. I was so lucky that Jim was able to come to Sacramento every weekend - it made each week have something good and important to look forward to, and made the time go more quickly.
My fears around radiation were mostly about what the unknown and very potent rays were doing inside my body - which, of course, was totally out of my control. The machine is big and makes strange noises. It was several treatments before I could open my eyes and actually look at it to figure out what some of the noises were about (mostly changing the lens shape to alter the field size and shape). It took days longer before I even noticed the blinking red light warning others not to enter the room. I understood right away the importance of being completely still once the set up was complete each day...even moving my feet had the potential to alter my position by a millimeter or two and that was not OK. I managed the short time I was on the table with lots of focus on breathing (yoga teachings that paid off) and counting each treatment segment length. It worked - helped me stay calm and cool.
Really, one of the reassuring things for me about radiation is that it has extremely rigid routines. I went to the same treatment room everyday. I had a small group of techs that took care of me. The techs were precise and focused as they adjusted my position and aligned all of the measurements and table settings prior to treatment. These things and more communicated competence and awareness of the importance of getting it right every time.
I feel pretty lucky that the radiation hasn't really added significantly to my lack of energy issues. I still have good and not-so-good days, but I think they are as much a lingering effect of chemo as related to the radiation. And, overall I am making gains day-by-day, week-by-week - yeah! The only real issue I've had is about the skin damage the radiation causes. The right side of my chest looks like someone put a big hot iron on my skin - not painful ever and getting better now. I'm in the itching (don't scratch!), peeling stage, just like an intense sunburn. This too shall pass - and, as I said, it's actually getting better every day!
So, I'm finished! I'm having a bit of a hard time believing it. Although I will have oncologist visits at intervals, there will not be much in the way of additional testing unless I come up with symptoms. In general, breast cancer patients are treated as 'cancer free' unless something comes up that needs checking out. I'm not sure when I'll stop looking over my shoulder, but I'm focused on being happy, happy to be done and on getting fully back on my feet.
BTW: I did have a CT scan of my chest and abdomen a few weeks ago (because of a cough that I can't quite shake - I think it's asthma). The great news is that the CT showed nothing that looked like cancer - in fact, it was unchanged from the pre-chemo CT I had done.
So 2011 is almost here. Jim and I have been so ready for this new year for months. In addition to this whole breast cancer thing, the past year has been filled with the loss of friends, colleagues, and favorite pets. We know that we're old enough to have people around us - and maybe even us - become sick or die. But, we hadn't experienced - or expected to experience - such an onslaught in one year. As a way of protecting ourselves from considering that this might be an on-going phenomenon, we have decided that it's all about 2010. The new year will be washed clean and will have an entirely different, more positive flair.
This is our wish for all of you and yours - that your 2011 is filled with love, blessings, happiness, good health and exciting adventures!
Oh...speaking of exciting adventures, we're going to England and Nice, France in June. Cross your fingers for us that we get Wimbledon tickets! Much love to you all!
Sunday, December 12, 2010
Radiation: A Primer December 12, 2010
Happy Holidays Everyone!
I've already had tech problems today. Wrote a long blog to you all, was making some final adjustments and - boom - it was gone. No actual sound, but all of a sudden it disappeared! So frustrating, especially because the auto-save component of this blog immediately saved the empty page! I can't recover the loss...ugh!
So, I'm going to do this again and maybe I'll get it better this time! My plan is to do a walk through of a radiation treatment - with pictures. Hopefully, you won't be too bored. This routine is how my work-week days have gone for the since November 16 - for a total of 17 completed treatments.
I am scheduled for 8:30 a.m. every morning, which means my day starts before 7 a.m. Many of you know how much of a morning person I am...not! I decided to take an early 'slot' because I'd have the rest of my day free. I'm glad it's this way - I can work, run errands, or nap if that's what seems right with the rest of the day.
When my trusty Camry gets me to the Radiation Oncology Center ((ROC)which is inside the Sutter Cancer Center), there is free valet parking. A true convenience allowing me to race to my appointment at the last minute - a young person takes care of the car for me and I head into the Center.
The ROC is in the basement. I used to fantasize that this location was because of the massive size of the equipment (oh, and to contain any errant radiation rays that wanted to fly around). Turns out that the equipment is big - but not THAT big. And, I'm certain that the walls, floors and ceilings are heavily lead lined to prevent errant rays flights - if there is any at all!
Must say that the folks running this Center have got the routines well organized. I walk into the main lobby where non-patients and new patients wait, swipe my bar-coded card under a reader and watch to see my name come up on a computer. When it does, I head to the private patient waiting room, choose a locker (#12 or #14, no odd numbers...bad), and change clothes. For my treatment, I relinquish my street clothes (upper only) for one of the oh-so-lovely, open-down-the-back, thin hospital gowns. You know them, I'm sure.
In the patient lobby area, there are usually four to six of us waiting for our names to be called for treatment. Because we're scheduled for the same time periods every day, the group is usually the same folks - older adults, mostly men and one or two women. I think that most of the women are there for breast cancer radiation and that most of us are treated in the same room, sequentially - thus, not so many women at a time in the waiting area. Our little group has, over my time with them, begun to chat a little each day. We talk about our non-cancer lives, about our treatments and work on being positive for each person. It's a mini cheer squad!
There is a very old man who is accompanied by his step-son. The older man has never said one word and his step-son is unable to speak. He communicates with us via written messages and is quite outgoing. He told me that his step-dad is a "pain in the ass!" Hmm. His step-dad has bandages on a small part of his face and I think that's where his radiation is directed.
Another member of our radiation cohort is getting chemo concurrently with radiation. And, twice a week he gets two radiation treatments in one day! Ugh and double ugh! There are definitely roads that are much more difficult than mine.
When it's our turn to go to treatment - and usually less than a ten minute wait for me - our names are called over the intercom. "Susan Strong please come back for your treatment." Off I go. Price of admission to the treatment room is my "name, rank and serial number" - my date of birth. This is one of the safety mechanisms in place to prevent treating the wrong patient with the wrong radiation prescription. You'd think that the techs would forget this as they get to know each person, but so far not one slip. Every day, I get asked and they double check the computer to be sure I'm right. Nice job. I like a safety first approach.
The picture below is of the room and equipment. Mr. Magoo is in the main item in the picture (to the right), along with the table and one of my techs, Michael.
At the head of the table, near Mr. Magoo, is a molded form that was shaped to fit my head with my arms over my head. When I get on the table, I put my head and arms into the mold and settle into its grooves. The idea is to try to have me be in the same position every time I get a treatment.
Next in sequence is getting set up for treatment. This involves aligning the three small tattoos on my chest, some green light strips and various felt pen marks that are applied daily into the exact position prescribed by my radiation oncologist. The techs will adjust my body, millimeter-by-millimeter, until I'm exactly lined up in the mold and on the table. I am not allowed to move at all once my arms and head are in the mold - I hold this position for fifteen minutes or more. When my arms go numb and my shoulders begin to ache, it feels like I've been there for the entire day. I know, whine, whine, whine.
This is me, set up in the head/arm mold with Mr. Magoo ready to go for the first treatment segment. You can see (maybe) a little gold glimmer on the right side of my chest. This picture was taken on a "bolus" day - the gold metal fabric diffuses and scatters the radiation beam so it doesn't go as deep. It's designed to be sure that my skin is treated adequately and this is done every other day.
While the set up is going on, the overhead lights are off. When treatment starts, the overhead lights go on, a red light flashes and Mr. Magoo buzzes. The treatment sequence goes something like this:
1. Overhead lights on, techs leave the room. Buzzing starts, red light flashes for about 6 seconds.
2. Mr. Magoo stays put, but internal sounds (like a camera starting up) happen. I've sneaked a peek at the face of Mr. Magoo as this has been happening and it looks like the lens is re-shaping it self to a new beam or treatment area. Once this adjustment is finished, buzzing and red lights for 19 seconds.
BTW: I count each treatment period every time I'm on the table. I use the old "one-one thousand" method, so it's probably not that accurate. But each time I do it, the numbers come out pretty much the same. Pretty obsessive, I know - a little known secret: I count lots of things and keep it to myself. Not sure why, but I find the counting calming and reassuring when I'm being radiated.
3. The overhead lights go off, a tech returns and Mr. Magoo moves over my body to the right side at an oblique angle. The table is adjusted - the techs call it "kicked" - into position. Overhead lights go on, the tech leaves and treatment begins. Red light, buzzing - this time in a 6, 19 and 5 second array of three segments.
4. Overhead lights off, tech adjustments to the table and Mr. Magoo moves to hover directly over my chest and neck area. I make sure I do not move a muscle - this treatment goes partly onto my neck and it seems a pretty good place to get the radiation location exactly right. This is the longest direct treatment time - a total of about 30 seconds in two bursts; five and 25 seconds each.
That's it. Except for the once a week x-rays that are taken for "quality assurance." I get to take my arms out of the mold, sit up and most days return to the women's locker, change clothes again and am in my car before 9:00 a.m.
Once a week, I see my radiation oncologist. She primarily checks my skin to be sure that it isn't breaking down too much. Actually, my skin has been pretty good - and I now know, on target for the changes that usually happen. As of Wednesday last week, I have a "sunburn" type rash in various locations on the front and back of my chest. I'm pretty sure it will get worse through the rest of the treatments - 8 left. But, then I'll be done and the burn will heal. In the meantime, aloe vera and hydrocortisone cream help.
All in all, I've adjusted to the routine pretty well. And, I'm glad that it is a routine - there's very little day-to-day anxiety for me relative to what will happen during treatment. "No surprises" is a good thing when we're talking about a big machine with super powers! And, I will say that the ROC staff - from the front desk to the radiation techs, to the nurses and doctors - are all sensitive to the importance and enormity of the work that they are doing every day. They smile, talk to their patients, answer questions, return phone calls promptly and generally stay on top of what's going on. I appreciate every piece of the routine - and non-routine - things that they do.
I hope you are not being too crazy-stressed about the season and getting ready for the holidays. My energy limits the amount of jumping in with both feet that I can do, so I'm feeling unready and calm about it at this point. Some days, just getting into the car and dealing with the traffic is enough to wear me out...oh yeah, you all know about that too! With our little rural town as our background for traffic, I'm not sure how you deal every day with the masses of people and metal on the roadways! Incredible!
In doing the driving between Joy's house and Sacramento or Roseville, Jim and I have discovered what a flyway this area is for migrating birds. We have spotted several new species - the most amazing of which (so far) is the American Swan. These are huge, white birds with black beaks who migrate here from the Canadian tundra during the winter. Their wings spans are in excess of five feet! And, they are right by the road in big muddy ponds or puddles and in flooded rice paddies as we head to town. Couldn't resist taking a picture or two, though I hope to get closer next time.
Have a wonderful week. K.C. - keep getting better! Love to all!
I've already had tech problems today. Wrote a long blog to you all, was making some final adjustments and - boom - it was gone. No actual sound, but all of a sudden it disappeared! So frustrating, especially because the auto-save component of this blog immediately saved the empty page! I can't recover the loss...ugh!
So, I'm going to do this again and maybe I'll get it better this time! My plan is to do a walk through of a radiation treatment - with pictures. Hopefully, you won't be too bored. This routine is how my work-week days have gone for the since November 16 - for a total of 17 completed treatments.
I am scheduled for 8:30 a.m. every morning, which means my day starts before 7 a.m. Many of you know how much of a morning person I am...not! I decided to take an early 'slot' because I'd have the rest of my day free. I'm glad it's this way - I can work, run errands, or nap if that's what seems right with the rest of the day.
When my trusty Camry gets me to the Radiation Oncology Center ((ROC)which is inside the Sutter Cancer Center), there is free valet parking. A true convenience allowing me to race to my appointment at the last minute - a young person takes care of the car for me and I head into the Center.
The ROC is in the basement. I used to fantasize that this location was because of the massive size of the equipment (oh, and to contain any errant radiation rays that wanted to fly around). Turns out that the equipment is big - but not THAT big. And, I'm certain that the walls, floors and ceilings are heavily lead lined to prevent errant rays flights - if there is any at all!
Must say that the folks running this Center have got the routines well organized. I walk into the main lobby where non-patients and new patients wait, swipe my bar-coded card under a reader and watch to see my name come up on a computer. When it does, I head to the private patient waiting room, choose a locker (#12 or #14, no odd numbers...bad), and change clothes. For my treatment, I relinquish my street clothes (upper only) for one of the oh-so-lovely, open-down-the-back, thin hospital gowns. You know them, I'm sure.
In the patient lobby area, there are usually four to six of us waiting for our names to be called for treatment. Because we're scheduled for the same time periods every day, the group is usually the same folks - older adults, mostly men and one or two women. I think that most of the women are there for breast cancer radiation and that most of us are treated in the same room, sequentially - thus, not so many women at a time in the waiting area. Our little group has, over my time with them, begun to chat a little each day. We talk about our non-cancer lives, about our treatments and work on being positive for each person. It's a mini cheer squad!
There is a very old man who is accompanied by his step-son. The older man has never said one word and his step-son is unable to speak. He communicates with us via written messages and is quite outgoing. He told me that his step-dad is a "pain in the ass!" Hmm. His step-dad has bandages on a small part of his face and I think that's where his radiation is directed.
Another member of our radiation cohort is getting chemo concurrently with radiation. And, twice a week he gets two radiation treatments in one day! Ugh and double ugh! There are definitely roads that are much more difficult than mine.
When it's our turn to go to treatment - and usually less than a ten minute wait for me - our names are called over the intercom. "Susan Strong please come back for your treatment." Off I go. Price of admission to the treatment room is my "name, rank and serial number" - my date of birth. This is one of the safety mechanisms in place to prevent treating the wrong patient with the wrong radiation prescription. You'd think that the techs would forget this as they get to know each person, but so far not one slip. Every day, I get asked and they double check the computer to be sure I'm right. Nice job. I like a safety first approach.
The picture below is of the room and equipment. Mr. Magoo is in the main item in the picture (to the right), along with the table and one of my techs, Michael.
At the head of the table, near Mr. Magoo, is a molded form that was shaped to fit my head with my arms over my head. When I get on the table, I put my head and arms into the mold and settle into its grooves. The idea is to try to have me be in the same position every time I get a treatment.
Next in sequence is getting set up for treatment. This involves aligning the three small tattoos on my chest, some green light strips and various felt pen marks that are applied daily into the exact position prescribed by my radiation oncologist. The techs will adjust my body, millimeter-by-millimeter, until I'm exactly lined up in the mold and on the table. I am not allowed to move at all once my arms and head are in the mold - I hold this position for fifteen minutes or more. When my arms go numb and my shoulders begin to ache, it feels like I've been there for the entire day. I know, whine, whine, whine.
This is me, set up in the head/arm mold with Mr. Magoo ready to go for the first treatment segment. You can see (maybe) a little gold glimmer on the right side of my chest. This picture was taken on a "bolus" day - the gold metal fabric diffuses and scatters the radiation beam so it doesn't go as deep. It's designed to be sure that my skin is treated adequately and this is done every other day.
While the set up is going on, the overhead lights are off. When treatment starts, the overhead lights go on, a red light flashes and Mr. Magoo buzzes. The treatment sequence goes something like this:
1. Overhead lights on, techs leave the room. Buzzing starts, red light flashes for about 6 seconds.
2. Mr. Magoo stays put, but internal sounds (like a camera starting up) happen. I've sneaked a peek at the face of Mr. Magoo as this has been happening and it looks like the lens is re-shaping it self to a new beam or treatment area. Once this adjustment is finished, buzzing and red lights for 19 seconds.
BTW: I count each treatment period every time I'm on the table. I use the old "one-one thousand" method, so it's probably not that accurate. But each time I do it, the numbers come out pretty much the same. Pretty obsessive, I know - a little known secret: I count lots of things and keep it to myself. Not sure why, but I find the counting calming and reassuring when I'm being radiated.
3. The overhead lights go off, a tech returns and Mr. Magoo moves over my body to the right side at an oblique angle. The table is adjusted - the techs call it "kicked" - into position. Overhead lights go on, the tech leaves and treatment begins. Red light, buzzing - this time in a 6, 19 and 5 second array of three segments.
4. Overhead lights off, tech adjustments to the table and Mr. Magoo moves to hover directly over my chest and neck area. I make sure I do not move a muscle - this treatment goes partly onto my neck and it seems a pretty good place to get the radiation location exactly right. This is the longest direct treatment time - a total of about 30 seconds in two bursts; five and 25 seconds each.
That's it. Except for the once a week x-rays that are taken for "quality assurance." I get to take my arms out of the mold, sit up and most days return to the women's locker, change clothes again and am in my car before 9:00 a.m.
Once a week, I see my radiation oncologist. She primarily checks my skin to be sure that it isn't breaking down too much. Actually, my skin has been pretty good - and I now know, on target for the changes that usually happen. As of Wednesday last week, I have a "sunburn" type rash in various locations on the front and back of my chest. I'm pretty sure it will get worse through the rest of the treatments - 8 left. But, then I'll be done and the burn will heal. In the meantime, aloe vera and hydrocortisone cream help.
All in all, I've adjusted to the routine pretty well. And, I'm glad that it is a routine - there's very little day-to-day anxiety for me relative to what will happen during treatment. "No surprises" is a good thing when we're talking about a big machine with super powers! And, I will say that the ROC staff - from the front desk to the radiation techs, to the nurses and doctors - are all sensitive to the importance and enormity of the work that they are doing every day. They smile, talk to their patients, answer questions, return phone calls promptly and generally stay on top of what's going on. I appreciate every piece of the routine - and non-routine - things that they do.
I hope you are not being too crazy-stressed about the season and getting ready for the holidays. My energy limits the amount of jumping in with both feet that I can do, so I'm feeling unready and calm about it at this point. Some days, just getting into the car and dealing with the traffic is enough to wear me out...oh yeah, you all know about that too! With our little rural town as our background for traffic, I'm not sure how you deal every day with the masses of people and metal on the roadways! Incredible!
In doing the driving between Joy's house and Sacramento or Roseville, Jim and I have discovered what a flyway this area is for migrating birds. We have spotted several new species - the most amazing of which (so far) is the American Swan. These are huge, white birds with black beaks who migrate here from the Canadian tundra during the winter. Their wings spans are in excess of five feet! And, they are right by the road in big muddy ponds or puddles and in flooded rice paddies as we head to town. Couldn't resist taking a picture or two, though I hope to get closer next time.
Have a wonderful week. K.C. - keep getting better! Love to all!
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