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!
Saturday, December 4, 2010
Sadness Today - December 4, 2010
Hello Everyone,
Today I want to tell you about a friend and colleauge who died on November 27, 2010. I found out yesterday that he was gone and I'm pretty much still in shock, thinking about him and wondering what we all wonder - why?
I met Randy several years ago in the context of our work. He and I have both been working in the HIV world for many years - me full- and part-time for pretty much the last 20 plus years of my career. Randy, however, had a different stake in his work...he was always working to make life better for people living with HIV because he was a person living with it.
He had passion for this work - and he was tireless in his efforts to deal with the stigma, the medical issues, governmental inaction, and other barriers in order to make change, to make things better for every infected person. Long hours on the San Francisco HIV Health Council, founding the Coalition for National AIDS Strategy and so many other areas of important work - action and energy, even when he was physically and mentally drained. Randy was smart - intellectually and politically. He could get things done and he really cared.
We shared several areas in which our lives intersected. Randy and Lee (his husband) have a beagle, Darwin. Jim and I love our beagles - as you know. I met Darwin a time or two and was most impressed with his manners, which our beagles are seriously lacking. Randy did tell stories of very stubborn behavior which is so "beagle" - that made me feel some better.
I should also mention that - as fits his energy and penchant to action - he and Lee organized an annual Beaglefest. Held on Angel Island, the event drew up to 200 beagles and owners! We weren't ever able to attend but loved the idea and wished we could have taken Jazmin, Ranger and Scout too!
A couple of years ago I worked at the Open Door Community Health Center in Crescent City. My job was to be a case manager for infectious diseases - which meant working with people living with HIV and those infected with Hepatitis C. Coincidentally, Randy told me he'd been diagnosed with Hepatitis C - and, as with most folks, his diagnosis came years after the original infection, which had been silently damaging his liver over many, many years. He was surprised at the diagnosis, but determined to go through treatment. A brave man, I thought. Hep C treatment (pills everyday and an injection of interferon weekly) is nasty hard. It is chemotherapy, though not very many people call it that. Side effects can be awful - nausea, weakness, fever, extreme fatigue and more. In combination with HIV, treatment is tricky and even more difficult.
After some time, Randy decided it just wasn't worth it - the side effects were too terrible. I'm sure his decision was made with full knowledge of the potential future impacts on his health - he was an avid Internet (and other sources) information gatherer. But Randy was so focused on living life to the fullest that I'm sure it was just too difficult to give up his days to the treatment regime.
Then another and more awful coincidence: I was diagnosed with breast cancer and Randy was diagnosed with anal cancer. Over last summer, we became "cancer buddies." Although our diagnoses and treatments were pretty different, chemo and radiation were shared experiences. I was writing a blog and he wrote a blog. We emailed and talked a few times on the phone. We shared doctor and medical system stories - and talked about life with cancer.
And now, just a few months after his final diagnosis, Randy is gone. I don't know what the final events were - I hope that whatever happened, he was in no pain and that he knew Lee and their love until his last breath. I am so sorry and so angry that Randy is dead. Such a smart, dedicated, loving man should not be lost to our world.
I'm happy to say that all is well in my treatment world. And, Jim is here at Joy's this weekend - a very good thing!
Today I want to tell you about a friend and colleauge who died on November 27, 2010. I found out yesterday that he was gone and I'm pretty much still in shock, thinking about him and wondering what we all wonder - why?
I met Randy several years ago in the context of our work. He and I have both been working in the HIV world for many years - me full- and part-time for pretty much the last 20 plus years of my career. Randy, however, had a different stake in his work...he was always working to make life better for people living with HIV because he was a person living with it.
He had passion for this work - and he was tireless in his efforts to deal with the stigma, the medical issues, governmental inaction, and other barriers in order to make change, to make things better for every infected person. Long hours on the San Francisco HIV Health Council, founding the Coalition for National AIDS Strategy and so many other areas of important work - action and energy, even when he was physically and mentally drained. Randy was smart - intellectually and politically. He could get things done and he really cared.
We shared several areas in which our lives intersected. Randy and Lee (his husband) have a beagle, Darwin. Jim and I love our beagles - as you know. I met Darwin a time or two and was most impressed with his manners, which our beagles are seriously lacking. Randy did tell stories of very stubborn behavior which is so "beagle" - that made me feel some better.
I should also mention that - as fits his energy and penchant to action - he and Lee organized an annual Beaglefest. Held on Angel Island, the event drew up to 200 beagles and owners! We weren't ever able to attend but loved the idea and wished we could have taken Jazmin, Ranger and Scout too!
A couple of years ago I worked at the Open Door Community Health Center in Crescent City. My job was to be a case manager for infectious diseases - which meant working with people living with HIV and those infected with Hepatitis C. Coincidentally, Randy told me he'd been diagnosed with Hepatitis C - and, as with most folks, his diagnosis came years after the original infection, which had been silently damaging his liver over many, many years. He was surprised at the diagnosis, but determined to go through treatment. A brave man, I thought. Hep C treatment (pills everyday and an injection of interferon weekly) is nasty hard. It is chemotherapy, though not very many people call it that. Side effects can be awful - nausea, weakness, fever, extreme fatigue and more. In combination with HIV, treatment is tricky and even more difficult.
After some time, Randy decided it just wasn't worth it - the side effects were too terrible. I'm sure his decision was made with full knowledge of the potential future impacts on his health - he was an avid Internet (and other sources) information gatherer. But Randy was so focused on living life to the fullest that I'm sure it was just too difficult to give up his days to the treatment regime.
Then another and more awful coincidence: I was diagnosed with breast cancer and Randy was diagnosed with anal cancer. Over last summer, we became "cancer buddies." Although our diagnoses and treatments were pretty different, chemo and radiation were shared experiences. I was writing a blog and he wrote a blog. We emailed and talked a few times on the phone. We shared doctor and medical system stories - and talked about life with cancer.
And now, just a few months after his final diagnosis, Randy is gone. I don't know what the final events were - I hope that whatever happened, he was in no pain and that he knew Lee and their love until his last breath. I am so sorry and so angry that Randy is dead. Such a smart, dedicated, loving man should not be lost to our world.
I'm happy to say that all is well in my treatment world. And, Jim is here at Joy's this weekend - a very good thing!
Tuesday, November 30, 2010
Mr. Magoo November 30, 2010
Happy After-Thanksgiving and Pre-Other Holidays to you all!
How are you all? I am hoping all is well, but I do know that my sister-in-law, KC, is going to have a third try to fix her elbow in about 10 days. An out-patient procedure, but none-the-less, not so fun. I'm sending good karma your way, KC! I really hope no one else is going through similar situations.
I have completed nine radiation treatments and have 16 to go. So far, I've not really experienced any side effects...my skin is intact where the beams are aimed and my energy seems to be increasing every day, thank goodness! The docs say that both skin changes/damage and energy loss - when radiation related - don't usually begin until a bit later in the process. Right now, I have my fingers crossed that those side effects don't begin at all.
My last treatment is scheduled for December 22 - and if everything continues on schedule, our plan is to be packed to leave for home immediately after my last treatment. We haven't actually checked to see if we'll be required (medically) to stick around for anything, so we'll see what happens as the days progress.
It's hard to be so far away from home and Jim for so long. I miss Jim everyday! Joy has a wonderful home and has done everything possible to make me feel at home - including letting me bring Booker (African Gray parrot) and two cats (Mogwi and Sneakers) to live in her previously no-pet home. That takes a pretty big heart and I appreciate it so much. Booker is on my shoulder constantly when I'm in the house. The cats have moved right in and seem to be pretty much at home - even Sneaks has come out from under Joy's bed to explore and lounge in front of the fire!
For turkey day, we were so happy that three of our four human kids could join Joy, Jim and I for a feast, much laughing and hanging out on Friday. I did a little cooking on Thursday - desserts of course! On the big prep day, Jim and Joy cooked all day while I played executive chef from the couch. Not sure why, but it was a low energy day for me. I made it through without any naps, but my idea of being able to help with the cooking went out the window. I'm sure Joy and Jim think that I'm just a sloth. They were kind, however and didn't call me names - at least not out loud or in front of the kids!
Sometimes it's surprising what you get if you ask for it. Today I asked the radiation tecnologists if I could take a picture of the machinery that is doing its best to be sure I don't have any more local cancer cells. I thought I'd get a "we'll have to check with higher ups," or "we can't for liability reasons." But instead the response from all three was "sure!" "No problem!" I'm waiting for a camera to arrive - when it does, I plan to take a picture of the machine I fondly call Mr. Magoo and post it for you to see.
Do you remember Mr. Magoo? He's the cartoon character old man with terrible eyesight and coke bottle lenses. He is so cute, slightly bent over to squint at things and mumbling all the time. The radiation machine is one eyed (I couldn't get my head around calling him "cyclops." I wanted to greet it everyday with a little smile rather than fear). The one eye is very thick and the machine makes buzzing, clicking and other mumbling sounds as it's doing its work. I imagine Mr. Magoo standing really close to me, squinting his eyes behind his thick, thick lenses to look closely to see just who is climbing on the table, then clucking a greeting at me. This vision has made it much easier for me lay still for the treatments.
Follow-up to the Strange Smell in the Car story: Thanks for all the suggestions you sent. You were right (and we were too) - it was a dead thing in the engine area. Specifically, it was a dead rat under the windshield wiper cowling. The rat had been there long enough to make a nest and start to chew on the cabin air filter. Long story short, we ended up taking the car to Toyota maintenance, spending a day and $600, but the odor and all of the reasons for it are gone. I felt really sorry for the service techs - after their usual high tech forays hadn't found the cause of the smell, they had to resort to "sniff" testing along the hood of the car to find it! Ugh!
That's it for now. The weather in this valley has gotten colder since I arrived, but there have been many sunny days. I've discovered that the route from Joy's to the Sutter Cancer Center is covered with beautiful birds - red-tailed hawks, harriers and red-shouldered hawks by the handfuls everyday, snowy white egrets, cattle egrets, blue herons, lots of blackbirds, Canadian geese, and even some American white swans on migration!
I hope your days are filled with new bird species to add to your life lists! I hope yours are easy sightings that make you smile as you go through your day. Thanks so much for your support - you make me smile as I spy new birds and go through my days!
How are you all? I am hoping all is well, but I do know that my sister-in-law, KC, is going to have a third try to fix her elbow in about 10 days. An out-patient procedure, but none-the-less, not so fun. I'm sending good karma your way, KC! I really hope no one else is going through similar situations.
I have completed nine radiation treatments and have 16 to go. So far, I've not really experienced any side effects...my skin is intact where the beams are aimed and my energy seems to be increasing every day, thank goodness! The docs say that both skin changes/damage and energy loss - when radiation related - don't usually begin until a bit later in the process. Right now, I have my fingers crossed that those side effects don't begin at all.
My last treatment is scheduled for December 22 - and if everything continues on schedule, our plan is to be packed to leave for home immediately after my last treatment. We haven't actually checked to see if we'll be required (medically) to stick around for anything, so we'll see what happens as the days progress.
It's hard to be so far away from home and Jim for so long. I miss Jim everyday! Joy has a wonderful home and has done everything possible to make me feel at home - including letting me bring Booker (African Gray parrot) and two cats (Mogwi and Sneakers) to live in her previously no-pet home. That takes a pretty big heart and I appreciate it so much. Booker is on my shoulder constantly when I'm in the house. The cats have moved right in and seem to be pretty much at home - even Sneaks has come out from under Joy's bed to explore and lounge in front of the fire!
For turkey day, we were so happy that three of our four human kids could join Joy, Jim and I for a feast, much laughing and hanging out on Friday. I did a little cooking on Thursday - desserts of course! On the big prep day, Jim and Joy cooked all day while I played executive chef from the couch. Not sure why, but it was a low energy day for me. I made it through without any naps, but my idea of being able to help with the cooking went out the window. I'm sure Joy and Jim think that I'm just a sloth. They were kind, however and didn't call me names - at least not out loud or in front of the kids!
Sometimes it's surprising what you get if you ask for it. Today I asked the radiation tecnologists if I could take a picture of the machinery that is doing its best to be sure I don't have any more local cancer cells. I thought I'd get a "we'll have to check with higher ups," or "we can't for liability reasons." But instead the response from all three was "sure!" "No problem!" I'm waiting for a camera to arrive - when it does, I plan to take a picture of the machine I fondly call Mr. Magoo and post it for you to see.
Do you remember Mr. Magoo? He's the cartoon character old man with terrible eyesight and coke bottle lenses. He is so cute, slightly bent over to squint at things and mumbling all the time. The radiation machine is one eyed (I couldn't get my head around calling him "cyclops." I wanted to greet it everyday with a little smile rather than fear). The one eye is very thick and the machine makes buzzing, clicking and other mumbling sounds as it's doing its work. I imagine Mr. Magoo standing really close to me, squinting his eyes behind his thick, thick lenses to look closely to see just who is climbing on the table, then clucking a greeting at me. This vision has made it much easier for me lay still for the treatments.
Follow-up to the Strange Smell in the Car story: Thanks for all the suggestions you sent. You were right (and we were too) - it was a dead thing in the engine area. Specifically, it was a dead rat under the windshield wiper cowling. The rat had been there long enough to make a nest and start to chew on the cabin air filter. Long story short, we ended up taking the car to Toyota maintenance, spending a day and $600, but the odor and all of the reasons for it are gone. I felt really sorry for the service techs - after their usual high tech forays hadn't found the cause of the smell, they had to resort to "sniff" testing along the hood of the car to find it! Ugh!
That's it for now. The weather in this valley has gotten colder since I arrived, but there have been many sunny days. I've discovered that the route from Joy's to the Sutter Cancer Center is covered with beautiful birds - red-tailed hawks, harriers and red-shouldered hawks by the handfuls everyday, snowy white egrets, cattle egrets, blue herons, lots of blackbirds, Canadian geese, and even some American white swans on migration!
I hope your days are filled with new bird species to add to your life lists! I hope yours are easy sightings that make you smile as you go through your day. Thanks so much for your support - you make me smile as I spy new birds and go through my days!
Tuesday, November 16, 2010
One Down - 24 to Go! November 16, 2010
Hi Everyone!
Well, it's been a little while since I wrote last (am I supposed to say "blogged?") and I have the same excuse that most everyone else has...it's been a busy couple of weeks. Oh, and I still have a few chemo effects charging around, too.
I have been lucky enough to be able to work between 2 - 6 hours most days, some days better than others. My pattern has been to get up feeling pretty OK, to work in my office and be couch potato in the afternoon. Weekend before last I slept a 13 hour night, napped twice during the day on Saturday and slept another 10 hours that night! Didn't do that much better this last weekend. Although I do love football, that much TV is just wasted time! But, I think my body is sending clear messages...I'm not totally back on my feet yet.
Speaking of chemo changes: I am much less dizzy than I was in the week that I managed to faint. That fact likely means that my bone marrow is making more red and white cells, as it is supposed to do. My low energy level tells me that I am probably still anemic, but not being dizzy is a start. Yeah!
I still have peripheral neuropathy (numbness and tingling in my fingertips and toes), which is a side effect of the Taxol. I'm told it may take months to go away - and, for some people, it doesn't. I hope the latter isn't me: it's really weird to try to place your feet properly when walking or to hold on to something you really can't feel. Folks who are diabetics and others who have heart disease or other issues, can have this problem. Until now, I never knew what they were going through. It doesn't hurt (at least for me), but it is so weird!
The title of this blog refers, of course, to the fact that I had my first radiation treatment today. It was easy enough and weird enough, but I think it will quickly become routine. Several minutes of positioning by the techs, recording of numbers (91.5, 87.5, etc.), techs leaving the room, the machine beeping and whirring, and presto-chango, all done. Maybe 20 minutes total and this one was longer since it was the first. No pain, no sensation whatsoever. Just calm, steady position holding for a few minutes on my part - I asked if I could breathe while the radiation was being delivered and was told "we recommend it." Hah!
I left you at last blog with the correct impression that I had some remaining questions about the radiation dosage prescribed for me at the Sacramento office. I want to let you know that my medical oncologist coordinated a very nice second opinion for me with a radiation oncologist in San Mateo. This doc reviewed my chart, read all my surgery notes, chemo details, looked at my pathology slides and talked to the pathologist. Then, he called me and told me that what was prescribed was exactly what he would do in his shop. He explained that the difference in dosage was due to the timing of the recommendation - the longer treatment period (and higher dosage) had been discussed before I had the mastectomy and all the tumor was removed (clean margins).
I feel comfortable now in my Sacramento radiation location - and am very grateful to the wonderful docs in San Mateo for helping me get my questions answered. Sometimes the health system does work!
Jim and I loaded the car yesterday with two cats and one bird (Booker) and a bunch of my junk and moved me into Joy's house. I've spent a little time today getting organized and settled here. The cats are doing well, though they and Booker are still nervous. Sneakers is under Joy's bed...apparently for the day today. Isn't it amazing how cats learn about where their litter box is and just go for it?
It was hard to leave Sal (our lovely Double Yellow-headed Amazon parrot) and the dogs at home. I'm not sure how they'll interpret it and I'm most worried about Sal since he's been so strange since I've been hairless and wearing hats/scarves the past several months.
Jim is here until Friday morning and that's a real treat for me. We get time together and I appreciate every second of it. It will be hard and harder once he goes home and we start the long time apart!
BTW: we are thinking that something has crawled into the engine or vent system of my lovely Toyota and died. I had a weird noise experience last week when I started it - kind of a rattling, bumping sound from the front passenger side. The noise went away without any obvious resulting problems... until the last couple of days. Now we have a very foul odor, which seems to be getting worse and we both think we've got something really dead lurking somewhere. Unfortunately, there is nothing obvious to be seen. Do you have any ideas of what to do?
We will likely take the car to a dealer and have it disassembled to find what the issue may be. In the mean time, don't ask for a ride with us unless you have a really bad cold or allergies!
With thanks for all your good thoughts and prayers and with hopes that you have a wonderful week!
Well, it's been a little while since I wrote last (am I supposed to say "blogged?") and I have the same excuse that most everyone else has...it's been a busy couple of weeks. Oh, and I still have a few chemo effects charging around, too.
I have been lucky enough to be able to work between 2 - 6 hours most days, some days better than others. My pattern has been to get up feeling pretty OK, to work in my office and be couch potato in the afternoon. Weekend before last I slept a 13 hour night, napped twice during the day on Saturday and slept another 10 hours that night! Didn't do that much better this last weekend. Although I do love football, that much TV is just wasted time! But, I think my body is sending clear messages...I'm not totally back on my feet yet.
Speaking of chemo changes: I am much less dizzy than I was in the week that I managed to faint. That fact likely means that my bone marrow is making more red and white cells, as it is supposed to do. My low energy level tells me that I am probably still anemic, but not being dizzy is a start. Yeah!
I still have peripheral neuropathy (numbness and tingling in my fingertips and toes), which is a side effect of the Taxol. I'm told it may take months to go away - and, for some people, it doesn't. I hope the latter isn't me: it's really weird to try to place your feet properly when walking or to hold on to something you really can't feel. Folks who are diabetics and others who have heart disease or other issues, can have this problem. Until now, I never knew what they were going through. It doesn't hurt (at least for me), but it is so weird!
The title of this blog refers, of course, to the fact that I had my first radiation treatment today. It was easy enough and weird enough, but I think it will quickly become routine. Several minutes of positioning by the techs, recording of numbers (91.5, 87.5, etc.), techs leaving the room, the machine beeping and whirring, and presto-chango, all done. Maybe 20 minutes total and this one was longer since it was the first. No pain, no sensation whatsoever. Just calm, steady position holding for a few minutes on my part - I asked if I could breathe while the radiation was being delivered and was told "we recommend it." Hah!
I left you at last blog with the correct impression that I had some remaining questions about the radiation dosage prescribed for me at the Sacramento office. I want to let you know that my medical oncologist coordinated a very nice second opinion for me with a radiation oncologist in San Mateo. This doc reviewed my chart, read all my surgery notes, chemo details, looked at my pathology slides and talked to the pathologist. Then, he called me and told me that what was prescribed was exactly what he would do in his shop. He explained that the difference in dosage was due to the timing of the recommendation - the longer treatment period (and higher dosage) had been discussed before I had the mastectomy and all the tumor was removed (clean margins).
I feel comfortable now in my Sacramento radiation location - and am very grateful to the wonderful docs in San Mateo for helping me get my questions answered. Sometimes the health system does work!
Jim and I loaded the car yesterday with two cats and one bird (Booker) and a bunch of my junk and moved me into Joy's house. I've spent a little time today getting organized and settled here. The cats are doing well, though they and Booker are still nervous. Sneakers is under Joy's bed...apparently for the day today. Isn't it amazing how cats learn about where their litter box is and just go for it?
It was hard to leave Sal (our lovely Double Yellow-headed Amazon parrot) and the dogs at home. I'm not sure how they'll interpret it and I'm most worried about Sal since he's been so strange since I've been hairless and wearing hats/scarves the past several months.
Jim is here until Friday morning and that's a real treat for me. We get time together and I appreciate every second of it. It will be hard and harder once he goes home and we start the long time apart!
BTW: we are thinking that something has crawled into the engine or vent system of my lovely Toyota and died. I had a weird noise experience last week when I started it - kind of a rattling, bumping sound from the front passenger side. The noise went away without any obvious resulting problems... until the last couple of days. Now we have a very foul odor, which seems to be getting worse and we both think we've got something really dead lurking somewhere. Unfortunately, there is nothing obvious to be seen. Do you have any ideas of what to do?
We will likely take the car to a dealer and have it disassembled to find what the issue may be. In the mean time, don't ask for a ride with us unless you have a really bad cold or allergies!
With thanks for all your good thoughts and prayers and with hopes that you have a wonderful week!
Wednesday, October 27, 2010
Part Three - Coming Up October 27, 2010
Greetings Everyone!
Right now in Crescent City it's a beautiful, sunny, somewhat windy, fall day with rain projected at 70 - 90% today and maybe a total of one inch by the time the storm moves on. Last week we had huge wind, lightning and rain storms that brought big tree limbs down, cut our power twice in 24 hours and filled our gutters (again) with all the tree debris that's been accumulating since the last storm. One of Jim's big home owner jobs is to take my electric blower (yes, mine - and, it was a birthday gift, too!), get on the roof and blow all of the mess off of the roof and out of the gutters. He's already been up there once this season, and it immediately stormed and clogged the gutters again. I argue strongly against this dangerous little home chore when the roof is wet - which is pretty much all the time at the moment. I don't always win. Cross your fingers for dry days this weekend - that's usually when the urge to roof climb strikes.
So...the last chemo is doing its best to make me miserable, but beginning to fade. I was able to work last week (Tuesday through Saturday - yahoo steroids!) with energy falling as the week went on. By Sunday, I was a couch potato and slept most of the day. Monday I actually managed to pass out - an unexpected event, since I am usually really able to monitor being dizzy and manage it to not actually faint. Got surprised, but not injured. A better day Tuesday and today, so far. The good news is that I should be able to climb back up and out of this in a few more days - and the GREAT news is that I don't have a cycle to start again next Monday!!
However, the next part of this journey has begun...information, set-up, planning and scheduling of radiation. I've really been re-immersed in the numbers that got us started on this journey again, which (lucky you) I've decided to share. Here goes:
But, I wrote in this vein today partly because this is how I'm dealing with stuff...and how I plan to keep dealing no matter what happens. Radiation - big scary machines that do invisible things to kill cells - is another step on this journey and has me thinking again about this little trip Jim and I (and you) are on. I want to have all the information I can find that 's accurate and informative. I wish I'd paid better attention in statistics those many years ago so I could really understand the statistics in some of the research I'm reading. I wish I understood cellular biology and angiotensin growth factors and many other clinical/biological things that are being researched that may come to apply at some point. None-the-less, my plan is to do the best I can with the cards dealt and to know about as many of the cards that are not yet face up...and sprinkle a little denial into the mix once in a while. I will be a partner in my health care and I will be making the decisions about what happens to me. This won't be happening "to" me - it's happening in me and with me and I'll be right there asking questions and trying to figure out the next best steps for me. Right now, those steps involve a big scary machine and hormone therapy to get to a cure.
And, just so you know...Jim's giving me about another week to "get over" chemo and then he has a work-out, shape up plan that sounds grueling. Studies do show that women with breast cancer who exercise and stay at the correct BMI (ahemmm), live longer than those who don't. Any of you remember me when I worked out hard 6 - 7 days a week? Well, Jim does and he's making plans for my re-addiction to the whole exercise thing. Maybe whining will divert him for a little longer.
Thanks to Susan, Kelly and Karen for the great lunch today. Happy Birthday, Susan!
BTW: It's raining! :)
Right now in Crescent City it's a beautiful, sunny, somewhat windy, fall day with rain projected at 70 - 90% today and maybe a total of one inch by the time the storm moves on. Last week we had huge wind, lightning and rain storms that brought big tree limbs down, cut our power twice in 24 hours and filled our gutters (again) with all the tree debris that's been accumulating since the last storm. One of Jim's big home owner jobs is to take my electric blower (yes, mine - and, it was a birthday gift, too!), get on the roof and blow all of the mess off of the roof and out of the gutters. He's already been up there once this season, and it immediately stormed and clogged the gutters again. I argue strongly against this dangerous little home chore when the roof is wet - which is pretty much all the time at the moment. I don't always win. Cross your fingers for dry days this weekend - that's usually when the urge to roof climb strikes.
So...the last chemo is doing its best to make me miserable, but beginning to fade. I was able to work last week (Tuesday through Saturday - yahoo steroids!) with energy falling as the week went on. By Sunday, I was a couch potato and slept most of the day. Monday I actually managed to pass out - an unexpected event, since I am usually really able to monitor being dizzy and manage it to not actually faint. Got surprised, but not injured. A better day Tuesday and today, so far. The good news is that I should be able to climb back up and out of this in a few more days - and the GREAT news is that I don't have a cycle to start again next Monday!!
However, the next part of this journey has begun...information, set-up, planning and scheduling of radiation. I've really been re-immersed in the numbers that got us started on this journey again, which (lucky you) I've decided to share. Here goes:
- In April, I was diagnosed with invasive lobular carcinoma of the right breast;
- In June - after two lumpectomies - I had a mastectomy and extensive axilary node dissection. All cancer that was seen was removed. The margins (edges) of the main tumor were "clean." However, 23 of 24 nodes were positive for cancer.
- The extent of cancer that was found caused me to be "staged" at Stage 3. There are four stages given, based on the size of the initial tumor and whether or not lymph nodes were found to contain cancer. Because of the larger size of the tumor and the large number of positive lymph nodes, I moved right up to Stage 3. (Stage 1 is very early and, of course, Stage 4 is a late catch.) Stage 3 is considered "advanced" disease - but because I had no evidence of distant metastasis (as in bones, liver, etc.), I am not at Stage 4 or "late" disease.
- Statistically (based on data from 2001 and 2002), women in my situation have about a 49% five-year survival rate overall. This means that, with treatment, its about a flip of a coin for me. Not the best number, but still hopefull since I have no obvious mets. And, survival rates are improving every year...
- Both Jennifer Brown, the medical/chemo oncologist, and Janice Ryu, the new radiation oncologist, confirm that survival is increased when chemotherapy, radiation and hormone therapy are given after mastectomy. Dr. Brown told me she has gone for a "cure" with the chemo and has been very aggressive. I believe her.
- Dr. Ryu has prescribed 5,000 rads total dose of radiation over 25 daily treatments. This is a lower number of treatments than I've heard proposed before, so I'm still gathering information about how "aggressive" she's being. I plan to ambush my oncologist on Friday with this somewhat sensitive question. At this moment, I start radiation on November 16.
- Hormone therapy is given to women whose tumors test E2 and P2 positive, which mine did. Dr. Brown says that the tumor type that I have is actually very responsive to hormone therapy and that this is one of the most important components of the total treatment plan. For me it will be an aromatase inhibitor, which is a newer class of drugs designed to remove all the remaning estrogen from my body. Like menopause didn't do enough, already! I'll take hormone therapy for at least five years - so I'm told today. Who knows what will change and/or be new in that amount of time.
- By December 22, I should be done with radiation, chemo and nicely adjusted to hormone therapy. The side effects of all of this year will march on for a little longer after that. But, as my friends said today, then normal life - real life - begins again at our house.
But, I wrote in this vein today partly because this is how I'm dealing with stuff...and how I plan to keep dealing no matter what happens. Radiation - big scary machines that do invisible things to kill cells - is another step on this journey and has me thinking again about this little trip Jim and I (and you) are on. I want to have all the information I can find that 's accurate and informative. I wish I'd paid better attention in statistics those many years ago so I could really understand the statistics in some of the research I'm reading. I wish I understood cellular biology and angiotensin growth factors and many other clinical/biological things that are being researched that may come to apply at some point. None-the-less, my plan is to do the best I can with the cards dealt and to know about as many of the cards that are not yet face up...and sprinkle a little denial into the mix once in a while. I will be a partner in my health care and I will be making the decisions about what happens to me. This won't be happening "to" me - it's happening in me and with me and I'll be right there asking questions and trying to figure out the next best steps for me. Right now, those steps involve a big scary machine and hormone therapy to get to a cure.
And, just so you know...Jim's giving me about another week to "get over" chemo and then he has a work-out, shape up plan that sounds grueling. Studies do show that women with breast cancer who exercise and stay at the correct BMI (ahemmm), live longer than those who don't. Any of you remember me when I worked out hard 6 - 7 days a week? Well, Jim does and he's making plans for my re-addiction to the whole exercise thing. Maybe whining will divert him for a little longer.
Thanks to Susan, Kelly and Karen for the great lunch today. Happy Birthday, Susan!
BTW: It's raining! :)
Sunday, October 17, 2010
The Last One! October 17, 2010
Hi All You Sweeties!
I'm feeling pretty darn good - and pretty excited for two reasons: first, the last cycle of chemo was the "best" so far, and second, tomorrow will be the last of the chemo!
To be honest, I am sooo grateful to have had only a few 'down' days in this past cycle. I was able to work - not complete days but enough to contribute some to our local Building Healthy Communities project at an important time in it's life. And, I actually made soup last week - the first meal I've cooked in months! It felt good to have some energy coming back, to not be so dizzy all the time, etc.
Have to say, though, that I'm really relieved and happy to be knocking on the door of this last treatment. If it can be combined with the same sort of "easier" post-treatment cycle as this last was...is it too much to hope for?
Next week I'll see a radiation oncologist to see if there's a match between her approach to treatment, what is offered in San Mateo, what I know about treatment, and her personality/communication style/etc. and mine. If so, there are going to be appointments to finish the expansion of the pre-reconstruction insert to get it stable prior to radiation, then appointments to get everything set up to reproduce radiation doses over six weeks or so of treatment. I'm hoping to know soon what the start and end dates will be.
That's it for today. Hoping you are all doing well and that you've had a great weekend. The 49ers won one! The Giants one their first playoff game in Phillie! Life is getting better as the end of chemo approaches. Fall is here! Things aren't so bad, right?
Love to you all!
I'm feeling pretty darn good - and pretty excited for two reasons: first, the last cycle of chemo was the "best" so far, and second, tomorrow will be the last of the chemo!
To be honest, I am sooo grateful to have had only a few 'down' days in this past cycle. I was able to work - not complete days but enough to contribute some to our local Building Healthy Communities project at an important time in it's life. And, I actually made soup last week - the first meal I've cooked in months! It felt good to have some energy coming back, to not be so dizzy all the time, etc.
Have to say, though, that I'm really relieved and happy to be knocking on the door of this last treatment. If it can be combined with the same sort of "easier" post-treatment cycle as this last was...is it too much to hope for?
Next week I'll see a radiation oncologist to see if there's a match between her approach to treatment, what is offered in San Mateo, what I know about treatment, and her personality/communication style/etc. and mine. If so, there are going to be appointments to finish the expansion of the pre-reconstruction insert to get it stable prior to radiation, then appointments to get everything set up to reproduce radiation doses over six weeks or so of treatment. I'm hoping to know soon what the start and end dates will be.
That's it for today. Hoping you are all doing well and that you've had a great weekend. The 49ers won one! The Giants one their first playoff game in Phillie! Life is getting better as the end of chemo approaches. Fall is here! Things aren't so bad, right?
Love to you all!
Monday, October 4, 2010
A Post during Chemo? October 4, 2010
Hello Everyone,
I'm in the chemo room of California Cancer Center, getting ready for the next round. This will be 7 of 8 for the total treatment cycle and 3 of 4 for the Taxol. I'm gonna try to blog as it happens, tho I'm behind already. Technical difficulties with the iPad may get in the way - or I may fall asleep midway - but we'll give it the old college try.
Here's what's happened so far:
- in the chemo room, I chose a lounge chair with a great view of the outside. Tim, my registered nurse for the day found a vein, injected a little lidocaine and inserted the catheter, getting good blood flow return. He drew a CBC, hung a tiny bag of normal saline fluid and went to get the lab run.
Lab work is good to go...which means my hemoglobin and white counts are high enough to give me the Taxol. Now, Tim is here with the first of the IV pre-meds: Benedryl 25 mg and Zantac. The Benedryl is to prevent a possible hypersensitivity reaction, which Taxol occasionally causes. The Zantac is for nausea...also a possible side effect, though much less of an issue with Taxol than with the Adriamycin/Cytoxan cycles. This runs for about 20 minutes...the Benedryl is the one that may send me to nap time.
Last week was a tired one, with lots of dizzy/wobbly spells. Today I feel better again...eating well, no dizziness (other than my usual strange self) and feeling energetic. Started my prep for this round with dexamethasone yesterday and will get more IV today. Pretty much makes me "up" and wired.
Jim is here, making his Blackberry smoke. Once again, he's re-arranged his schedule to sit with me for these 4 hours. At the hospital, it's budget season and Jim is up to his eyebrows in getting the operating and capitol budgets done. And, it's time to get ready for year-end close, followed by audits. This week, he has Finance Committee and the Board meeting too! Busy and nerve wracking for Jim! Though I love having him here, it's a hard week for him to do it!
The next round of pre-meds are up and running. Zofran, another anti-nausea med and the steroids, dexamethasone. Another 20 minutes or so and it will be on to the Taxol. I got here at 10 am and it's now 10:50 am.
Now the Taxol. They start it slow to be sure I'm not going to have one of those hypersensitive reactions. I haven't so far, but they can be dangerous. Shortness of breath, swelling, etc. Reminds me that this stuff is poison! Total time for the Taxol will be a couple of hours.
So...a brief hair - or lack thereof - update. Taxol is also one that makes hair fall out, so not expecting any regrowth to happen. We buzzed my head two weeks after the first round of A/C. It fell out quickly and I now have a tiny halo of gray fuzz that remains. The fuzz hasn't fallen out nor has it regrown in one bit. I shaved my legs at about the same time and there's still no re-growth. Have lost most arm hair, but still have eyebrows! I'm altering between my wig and scarves. Don't really like wearing a wig...itchy, hot, strange. I wear it outside the house when I'm tired of being stared at...when I wear the scarves, strangers do double takes. You can almost hear them say " poor woman.". Ugh!
Thank you ALL for the wonderful cards, wishes, blog comments and support. I read them all and am continually amazed at how many friends and colleagues are out there taking this journey with me. Thank you, thank you!
So, all's finished. 2:00 pm. IV removed. Time for lunch - I feel good and then our long ride home with Jim at the wheel...he doesn't let me drive at all. Wishing you all a great week!
I'm in the chemo room of California Cancer Center, getting ready for the next round. This will be 7 of 8 for the total treatment cycle and 3 of 4 for the Taxol. I'm gonna try to blog as it happens, tho I'm behind already. Technical difficulties with the iPad may get in the way - or I may fall asleep midway - but we'll give it the old college try.
Here's what's happened so far:
- in the chemo room, I chose a lounge chair with a great view of the outside. Tim, my registered nurse for the day found a vein, injected a little lidocaine and inserted the catheter, getting good blood flow return. He drew a CBC, hung a tiny bag of normal saline fluid and went to get the lab run.
Lab work is good to go...which means my hemoglobin and white counts are high enough to give me the Taxol. Now, Tim is here with the first of the IV pre-meds: Benedryl 25 mg and Zantac. The Benedryl is to prevent a possible hypersensitivity reaction, which Taxol occasionally causes. The Zantac is for nausea...also a possible side effect, though much less of an issue with Taxol than with the Adriamycin/Cytoxan cycles. This runs for about 20 minutes...the Benedryl is the one that may send me to nap time.
Last week was a tired one, with lots of dizzy/wobbly spells. Today I feel better again...eating well, no dizziness (other than my usual strange self) and feeling energetic. Started my prep for this round with dexamethasone yesterday and will get more IV today. Pretty much makes me "up" and wired.
Jim is here, making his Blackberry smoke. Once again, he's re-arranged his schedule to sit with me for these 4 hours. At the hospital, it's budget season and Jim is up to his eyebrows in getting the operating and capitol budgets done. And, it's time to get ready for year-end close, followed by audits. This week, he has Finance Committee and the Board meeting too! Busy and nerve wracking for Jim! Though I love having him here, it's a hard week for him to do it!
The next round of pre-meds are up and running. Zofran, another anti-nausea med and the steroids, dexamethasone. Another 20 minutes or so and it will be on to the Taxol. I got here at 10 am and it's now 10:50 am.
Now the Taxol. They start it slow to be sure I'm not going to have one of those hypersensitive reactions. I haven't so far, but they can be dangerous. Shortness of breath, swelling, etc. Reminds me that this stuff is poison! Total time for the Taxol will be a couple of hours.
So...a brief hair - or lack thereof - update. Taxol is also one that makes hair fall out, so not expecting any regrowth to happen. We buzzed my head two weeks after the first round of A/C. It fell out quickly and I now have a tiny halo of gray fuzz that remains. The fuzz hasn't fallen out nor has it regrown in one bit. I shaved my legs at about the same time and there's still no re-growth. Have lost most arm hair, but still have eyebrows! I'm altering between my wig and scarves. Don't really like wearing a wig...itchy, hot, strange. I wear it outside the house when I'm tired of being stared at...when I wear the scarves, strangers do double takes. You can almost hear them say " poor woman.". Ugh!
Thank you ALL for the wonderful cards, wishes, blog comments and support. I read them all and am continually amazed at how many friends and colleagues are out there taking this journey with me. Thank you, thank you!
So, all's finished. 2:00 pm. IV removed. Time for lunch - I feel good and then our long ride home with Jim at the wheel...he doesn't let me drive at all. Wishing you all a great week!
Monday, September 27, 2010
Where Have I Been? September 27, 2010
Hi Everyone,
Actually, I didn't mean to be a non-blogger for these past couple of weeks...during my last chemo (September 20), I was on my iPad giving you a blow-by-blow description of what happens from IV stick to lab draw to chemo. I discovered, however, that the iPad isn't completely compatible with this blog program and I was unable to save a portion, return to it, and still have all the tools available to me to continue writing. I thought I saved what I had written, but it isn't posted on the site today so I think that effort was totally lost. Oh well!
My first round of Taxol was really lousy. Several medication changes were made for the last one which helped a lot. A new stomach medicine so I have less upset and can eat some. More steroids so the really achy, flu part of things is reduced in the first week. The result was that I did feel better last week - in fact I was able to WORK on Tuesday, Wednesday and Thursday! I actually got something done!
Unfortunately, the slide started on Friday (which was still an OK day, just not a working day) and continued through the weekend. Not as bad, however, as the first round...tired, bone achy and quite dizzy. I spent much of the weekend on the couch watching college and NFL football - ask me who won out of our state teams...not many! Nebraska won, though!
Time is going by quickly. Hard to believe it's the end of September! I have two more chemo treatments and then I'm done! After the chemo is rest for about a month or six weeks. I'm really hoping to get back on my feet then. Am starting to make decisions about where to get radiation - San Mateo through the same program or Sacramento. I'm lucky enough to have family/friends with homes in both locations - it helps a lot as I'll be able to consult with both doc groups and get a sense of who will be best to work with.
Sorry for the break in communication! I hope you are all doing well, enjoying apple pie and other wonderful fall goodies. BTW: for those of you who live up north as we do, did you know that Michelle at Vita Cucina makes the BEST blackberry pie ever! It was my birthday "cake" earlier this month and I've never had pie so good! Try other kinds too...I'm sure they're fabulous!
Actually, I didn't mean to be a non-blogger for these past couple of weeks...during my last chemo (September 20), I was on my iPad giving you a blow-by-blow description of what happens from IV stick to lab draw to chemo. I discovered, however, that the iPad isn't completely compatible with this blog program and I was unable to save a portion, return to it, and still have all the tools available to me to continue writing. I thought I saved what I had written, but it isn't posted on the site today so I think that effort was totally lost. Oh well!
My first round of Taxol was really lousy. Several medication changes were made for the last one which helped a lot. A new stomach medicine so I have less upset and can eat some. More steroids so the really achy, flu part of things is reduced in the first week. The result was that I did feel better last week - in fact I was able to WORK on Tuesday, Wednesday and Thursday! I actually got something done!
Unfortunately, the slide started on Friday (which was still an OK day, just not a working day) and continued through the weekend. Not as bad, however, as the first round...tired, bone achy and quite dizzy. I spent much of the weekend on the couch watching college and NFL football - ask me who won out of our state teams...not many! Nebraska won, though!
Time is going by quickly. Hard to believe it's the end of September! I have two more chemo treatments and then I'm done! After the chemo is rest for about a month or six weeks. I'm really hoping to get back on my feet then. Am starting to make decisions about where to get radiation - San Mateo through the same program or Sacramento. I'm lucky enough to have family/friends with homes in both locations - it helps a lot as I'll be able to consult with both doc groups and get a sense of who will be best to work with.
Sorry for the break in communication! I hope you are all doing well, enjoying apple pie and other wonderful fall goodies. BTW: for those of you who live up north as we do, did you know that Michelle at Vita Cucina makes the BEST blackberry pie ever! It was my birthday "cake" earlier this month and I've never had pie so good! Try other kinds too...I'm sure they're fabulous!
Monday, September 13, 2010
Book Titles- Septermber 3, 2010
Hello Everyone!
One of the games that Jim and I like to play is about made up titles for books we "plan" to write. For example, the last couple of years we've been thinking about a book called Presumed Republican. If you are the middle-aged/senior-aged, chief financial officer in the local hospital who is a member of Rotary, you are ...presumed Republican. Since just about everybody knows exactly where we live, imagine the surprise and confusion when Obama and No on Prop 8 signs appeared on our "Republican" (not) lawn a year ago. It got most interesting when we received feedback from the K - 8 school down the street from us that teachers were concerned about the effect of the Prop 8 sign on the children.
Anyhow, my latest book title is Chemo Sucks (Or 50 Things to Remember Even After Chemo Fog Does Its Best). This week's top entry for the list of 50 is "don't believe everything you're told." Yes folks, it's been one lousy week since the Taxol. Very close to as bad as the first round of A/C.
Remember when I asked "easier than what?" when my docs said that "most women" do better with Taxol? Less nausea, more energy, generally feeling better I was told. "In my experience, if you had a hard time with A/C, the Taxol will be easier." (a quote from my doc). "My friend was jogging on the 6th day after her infusion." (a quote from infusion RN). Hah!
In the rush to be optimistic, it is important to remember one really key thing - Taxol is chemotherapy, poison to cells. How much fun can it be? Bottomline for me this past week...it hasn't been any fun at all!
I was infused on Tuesday last, got home Tuesday night, felt good until Wednesday at about noon. From then on, you name the symptom and I've had it - bone aches all over (a Taxol specialty- you feel like your bones want to crawl out of your skin and no position is comfortable except asleep), low grade nausea which of course eliminates the appetite, dizziness, no energy, diarrhea, and more. Am at my computer for the first time in almost a week. Actually went for a ride in the car yesterday to get out of the house for a little while. Thank goodness the trial was cancelled; I was supposed to show up for jury duty this morning! I totally forgot to get my medical excuse taken care of and I slept til almost 10:00 this morning. Don't think the judge would have been too excited by my disregard of the legal system.
That's the news from Crescent City today. BTW: if you'd like to contribute to the list for Chemo Sucks, send me your items. We can probably come up with some fun stuff!
Have a great week, you all! Much love!
One of the games that Jim and I like to play is about made up titles for books we "plan" to write. For example, the last couple of years we've been thinking about a book called Presumed Republican. If you are the middle-aged/senior-aged, chief financial officer in the local hospital who is a member of Rotary, you are ...presumed Republican. Since just about everybody knows exactly where we live, imagine the surprise and confusion when Obama and No on Prop 8 signs appeared on our "Republican" (not) lawn a year ago. It got most interesting when we received feedback from the K - 8 school down the street from us that teachers were concerned about the effect of the Prop 8 sign on the children.
Anyhow, my latest book title is Chemo Sucks (Or 50 Things to Remember Even After Chemo Fog Does Its Best). This week's top entry for the list of 50 is "don't believe everything you're told." Yes folks, it's been one lousy week since the Taxol. Very close to as bad as the first round of A/C.
Remember when I asked "easier than what?" when my docs said that "most women" do better with Taxol? Less nausea, more energy, generally feeling better I was told. "In my experience, if you had a hard time with A/C, the Taxol will be easier." (a quote from my doc). "My friend was jogging on the 6th day after her infusion." (a quote from infusion RN). Hah!
In the rush to be optimistic, it is important to remember one really key thing - Taxol is chemotherapy, poison to cells. How much fun can it be? Bottomline for me this past week...it hasn't been any fun at all!
I was infused on Tuesday last, got home Tuesday night, felt good until Wednesday at about noon. From then on, you name the symptom and I've had it - bone aches all over (a Taxol specialty- you feel like your bones want to crawl out of your skin and no position is comfortable except asleep), low grade nausea which of course eliminates the appetite, dizziness, no energy, diarrhea, and more. Am at my computer for the first time in almost a week. Actually went for a ride in the car yesterday to get out of the house for a little while. Thank goodness the trial was cancelled; I was supposed to show up for jury duty this morning! I totally forgot to get my medical excuse taken care of and I slept til almost 10:00 this morning. Don't think the judge would have been too excited by my disregard of the legal system.
That's the news from Crescent City today. BTW: if you'd like to contribute to the list for Chemo Sucks, send me your items. We can probably come up with some fun stuff!
Have a great week, you all! Much love!
Monday, September 6, 2010
Heading to San Mateo - Again September 6, 2010
Happy Labor Day Everyone! I hope you've all had relaxing, fun weekends...maybe with a little sun and outdoor time involved?!
Here in Crescent City, we've been lucky enough to have sun and relatively warm weather (60s - which is really nice here). Jim went crazy yesterday in his garden and brought in handfuls of tomatoes (yellow babies, various red heirlooms - so good!) and actually canned five quarts of pickled beets. He just loves having those veggies from his childhood in the pantry for winter-time surprises. For me, the pickling brine smelled good, but frankly, I couldn't imagine actually eating the final product. Maybe later.
So we're about to join the traffic as we head to San Mateo for my chemo (#5) tomorrow. Again, not looking forward to it...though it will be a new drug and a new experience. The AC kicked my butt again this time during the first week - but relented a bit last week. I was able to be up and about for some hours everyday Monday - Friday...got some work done, saw some friends. Yeah! Have been a couch potato for Saturday/Sunday, but the US Open Tennis tournament is on...
The big news for me was getting in an airplane and flying to the Bay Area for my doctor's appointment on Friday. I haven't been in the air since before the first surgery in April - a long time, given my business - but finally saw a physical therapist about potential lymphedema in my right arm and was told what to do. Turns out that every mastectomy patients has about a 2% chance of getting lymphedema (swelling) in the arm/s where the lymph nodes have been removed. That risk continues, apparently, into the future and prevention activities help to avoid it.
I don't have lymphedema now and have a pressure sleeve for my arm which I wear, especially when flying. Turns out that the pressure gradients while in an airplane can drive lymph fluid into the arm cells and make things worse. The long and short for this trip? No problems...except for getting diverted from Arcata Airport to Redding because of fog (first time for me since living up here), staying overnight there and then being bussed back on Saturday. Nothing related to my wonderful medical issues...just another adventure! Thank goodness our friend Rick drove Jim to Arcata to pick me up and drive me home on Saturday afternoon - I would have made it, but I was tired!
You can tell, I'm sure, that I feel better this week. I am anxious about tomorrow, but trying hard to use my semi-Zen breathing and meditation techniquest to calm down and stay focused on good things. Thanks to everyone for all your support and for letting me be a princess-sized whiner! Randy, am thinking of you everyday - hope your first week has gone well.
Cross your fingers for chemo tomorrow and the week afterward! Should have less/no nausea and an "easier" time - that's how it's advertised. Love to you all!
Here in Crescent City, we've been lucky enough to have sun and relatively warm weather (60s - which is really nice here). Jim went crazy yesterday in his garden and brought in handfuls of tomatoes (yellow babies, various red heirlooms - so good!) and actually canned five quarts of pickled beets. He just loves having those veggies from his childhood in the pantry for winter-time surprises. For me, the pickling brine smelled good, but frankly, I couldn't imagine actually eating the final product. Maybe later.
So we're about to join the traffic as we head to San Mateo for my chemo (#5) tomorrow. Again, not looking forward to it...though it will be a new drug and a new experience. The AC kicked my butt again this time during the first week - but relented a bit last week. I was able to be up and about for some hours everyday Monday - Friday...got some work done, saw some friends. Yeah! Have been a couch potato for Saturday/Sunday, but the US Open Tennis tournament is on...
The big news for me was getting in an airplane and flying to the Bay Area for my doctor's appointment on Friday. I haven't been in the air since before the first surgery in April - a long time, given my business - but finally saw a physical therapist about potential lymphedema in my right arm and was told what to do. Turns out that every mastectomy patients has about a 2% chance of getting lymphedema (swelling) in the arm/s where the lymph nodes have been removed. That risk continues, apparently, into the future and prevention activities help to avoid it.
I don't have lymphedema now and have a pressure sleeve for my arm which I wear, especially when flying. Turns out that the pressure gradients while in an airplane can drive lymph fluid into the arm cells and make things worse. The long and short for this trip? No problems...except for getting diverted from Arcata Airport to Redding because of fog (first time for me since living up here), staying overnight there and then being bussed back on Saturday. Nothing related to my wonderful medical issues...just another adventure! Thank goodness our friend Rick drove Jim to Arcata to pick me up and drive me home on Saturday afternoon - I would have made it, but I was tired!
You can tell, I'm sure, that I feel better this week. I am anxious about tomorrow, but trying hard to use my semi-Zen breathing and meditation techniquest to calm down and stay focused on good things. Thanks to everyone for all your support and for letting me be a princess-sized whiner! Randy, am thinking of you everyday - hope your first week has gone well.
Cross your fingers for chemo tomorrow and the week afterward! Should have less/no nausea and an "easier" time - that's how it's advertised. Love to you all!
Sunday, August 29, 2010
Half Way August 29, 2010
Don't read any further if you are tired up to here with complaining and whining! You've been warned.
The good news is I'm done with the Adriamycin and Cytoxan cycles (4) prescribed for breast cancer at Stage 3. Everyone - doc's, nurses, others who've done it before me - said "it's hard." That is such a tremendous understatement! OMG!!
The good news is I'm half way done with the chemo phase of this treatment. If this is the first half, what - oh what - will the second half be like? Everyone - this time, doc's and nurses - say that the Taxol is " easier.". Easier than what? The AC? What does that mean, exactly? I'll be less exhausted? My appetite and taste buds will be somewhat better and I'll be able to get more than 1,000 - 1,200 calories down every day? Thank goodness I have so little energy...my calorie use is just enough that I am continuing to lose a pound or three every cycle, but hey I still have weight to lose, right?
As of today, I'm one week into the last AC round and had another lousy day. Had hoped to be enough on my feet by now to go to a friend's house for a little out of house time. That whole idea went up in flames...too tired, stomach upset. Just keep saying "maybe tomorrow.". I can hardly stand the thought that in one week I'll be starting another cycle, with three more after that one to finish! Quitting isn't an option, I get that...
Originally, I planned to write this blog about my history with chemo as a nurse and how I know that it was so much harder for those women - and the results much less good. Maybe next time. Today, it's hard to be very positive and/or optimistic. The next two months are stretching ahead and it's hard to see the light at the end of the tunnel - influenced, i know, by feeling like crap at the moment.
To my friend and colleague who's just starting treatment tomorrow - ignore all this crap. You're on another path...it will be different for you and you won't whine like I do. To being "cancer free", you and me!
Here's to Mike, his family and everyone who's missing Toni at SCH...we were sorry to miss the "tea party" last weekend. Blessings to you all.
Here's to my love Jim! Continually, he amazes me. Today, he fixed bird perches, watered the garden, did laundry, went to the grocery store, made me food, supervised showering (so that our parrot Sal didn't go ballistic), AND canned sweet and sour cabbage as well as salsa (he promises it's take the skin- off-your-mouth hot, not counting a million other tiny, important and cool things he managed to squeeze in! I can't tell you how much he means to me.
I promise I'll be better tomorrow and with the next blog! Honest!
The good news is I'm done with the Adriamycin and Cytoxan cycles (4) prescribed for breast cancer at Stage 3. Everyone - doc's, nurses, others who've done it before me - said "it's hard." That is such a tremendous understatement! OMG!!
The good news is I'm half way done with the chemo phase of this treatment. If this is the first half, what - oh what - will the second half be like? Everyone - this time, doc's and nurses - say that the Taxol is " easier.". Easier than what? The AC? What does that mean, exactly? I'll be less exhausted? My appetite and taste buds will be somewhat better and I'll be able to get more than 1,000 - 1,200 calories down every day? Thank goodness I have so little energy...my calorie use is just enough that I am continuing to lose a pound or three every cycle, but hey I still have weight to lose, right?
As of today, I'm one week into the last AC round and had another lousy day. Had hoped to be enough on my feet by now to go to a friend's house for a little out of house time. That whole idea went up in flames...too tired, stomach upset. Just keep saying "maybe tomorrow.". I can hardly stand the thought that in one week I'll be starting another cycle, with three more after that one to finish! Quitting isn't an option, I get that...
Originally, I planned to write this blog about my history with chemo as a nurse and how I know that it was so much harder for those women - and the results much less good. Maybe next time. Today, it's hard to be very positive and/or optimistic. The next two months are stretching ahead and it's hard to see the light at the end of the tunnel - influenced, i know, by feeling like crap at the moment.
To my friend and colleague who's just starting treatment tomorrow - ignore all this crap. You're on another path...it will be different for you and you won't whine like I do. To being "cancer free", you and me!
Here's to Mike, his family and everyone who's missing Toni at SCH...we were sorry to miss the "tea party" last weekend. Blessings to you all.
Here's to my love Jim! Continually, he amazes me. Today, he fixed bird perches, watered the garden, did laundry, went to the grocery store, made me food, supervised showering (so that our parrot Sal didn't go ballistic), AND canned sweet and sour cabbage as well as salsa (he promises it's take the skin- off-your-mouth hot, not counting a million other tiny, important and cool things he managed to squeeze in! I can't tell you how much he means to me.
I promise I'll be better tomorrow and with the next blog! Honest!
Sunday, August 22, 2010
The Roller Coaster -August 22, 2010
Sunday before my fourth chemo round. We're at Joy's, just relaxing. It's a gorgeous day...not too hot in the valley for us northern California coastal folks. We spent a little time with Damian and Sarah yesterday at the Davis Farmer's Market, followed by lunch. It's been really nice to be able to see everyone more frequently - even though the reason for it isn't great.
So this chemo cycle has been pretty lousy. I had a couple of good days initially, then pretty much slipped off the radar for last weekend. That much has been the usual for the first week. However, this second week has been very up and down, complicated by dizziness, exhaustion, some exertional shortness of breath, etc. While I've been able to do some work, it also took me 30 minutes to change the sheets and duvet cover on the bed and when Scout ran down the hill into the garden...well, it was quite an adventure to get her back to the house by myself.
Told all this to my oncologist who said it was unusual to be so fatigued. Got some blood drawn and my hemoglobin (the cells in the blood that carry oxygen around the body) was 9.5. This number is 2.5 grams below normal...so I'm anemic. Explains a lot, but having the explanation doesn't actually help me feel better. When we went to the Farmers' Market and lunch on Saturday, I was pretty much done energy-wise after a couple of hours. Laid down at Joy's and slept for five hours. Went to bed and slept through the night - another nine hours!
Another weird thing: I've been having very hot and sore soles of feet. A burning sensation combined with soreness in heels, balls of feet and toes. Turns out Adriamycin sometimes causes "hands and feet" syndrome...just what I described. Who knew? Prescription is lots of lotion on hands and feet. I can do that.
So tomorrow is the fourth and last cycle of the AC - thank goodness! The doses are going to be reduced a bit so that my bone marrow will recover better (hopefully). Next comes the Taxol, which is supposed to be easier. Fingers are crossed! I can now fly again, so we're going to try to figure out how to shorten these long treatment weekends. I love seeing kids and family, but I miss being at home and miss our pets too!
Sorry to be grumpy today, but I am pretty crabby about being tired all the time. My gardens haven't seen me once this summer. The weeds in the backyard areas that i usually maintain are out of control.I have interest in knitting for only a few days of the cycle - and I can hardly count the patterns some days. Cooking, cleaning the house? Ha! Thank God for Jim!
Oh well. Enough complaining. I hope you all are enjoying this wonderful weather. Send a little more sunshine to Crescent City, please...Jim's tomatoes need it. And, if you want to pick wild blackberries, schedule a trip to see us. They're just about ripe!
So this chemo cycle has been pretty lousy. I had a couple of good days initially, then pretty much slipped off the radar for last weekend. That much has been the usual for the first week. However, this second week has been very up and down, complicated by dizziness, exhaustion, some exertional shortness of breath, etc. While I've been able to do some work, it also took me 30 minutes to change the sheets and duvet cover on the bed and when Scout ran down the hill into the garden...well, it was quite an adventure to get her back to the house by myself.
Told all this to my oncologist who said it was unusual to be so fatigued. Got some blood drawn and my hemoglobin (the cells in the blood that carry oxygen around the body) was 9.5. This number is 2.5 grams below normal...so I'm anemic. Explains a lot, but having the explanation doesn't actually help me feel better. When we went to the Farmers' Market and lunch on Saturday, I was pretty much done energy-wise after a couple of hours. Laid down at Joy's and slept for five hours. Went to bed and slept through the night - another nine hours!
Another weird thing: I've been having very hot and sore soles of feet. A burning sensation combined with soreness in heels, balls of feet and toes. Turns out Adriamycin sometimes causes "hands and feet" syndrome...just what I described. Who knew? Prescription is lots of lotion on hands and feet. I can do that.
So tomorrow is the fourth and last cycle of the AC - thank goodness! The doses are going to be reduced a bit so that my bone marrow will recover better (hopefully). Next comes the Taxol, which is supposed to be easier. Fingers are crossed! I can now fly again, so we're going to try to figure out how to shorten these long treatment weekends. I love seeing kids and family, but I miss being at home and miss our pets too!
Sorry to be grumpy today, but I am pretty crabby about being tired all the time. My gardens haven't seen me once this summer. The weeds in the backyard areas that i usually maintain are out of control.I have interest in knitting for only a few days of the cycle - and I can hardly count the patterns some days. Cooking, cleaning the house? Ha! Thank God for Jim!
Oh well. Enough complaining. I hope you all are enjoying this wonderful weather. Send a little more sunshine to Crescent City, please...Jim's tomatoes need it. And, if you want to pick wild blackberries, schedule a trip to see us. They're just about ripe!
Monday, August 16, 2010
Couldn't Resist! August 16, 2010
Actually, it's not fair. He got shaved on Thursday last and his hair is already visibly growing back. I got shaved a month or more ago and, while I still have little fuzzes that haven't fallen out (not sure why), there is definately no re-growth. None! To keep his bald look, Jim's going to have to go to the barber shop every other week. And I thought we'd be saving on hair supplies.
So that's it from this end. Thank goodness, I feel better today. Went to movie yesterday - Eat, Pray, Love - highly recommend. If you haven't read the book, it's better of course!
And Jeff - stop falling and getting your head hurt! Enough!
Sunday, August 15, 2010
Another Cycle August 15, 2010
The good news is that I have one more round of AC (Adriamycin/Cytoxan) and then I start on Taxol. Why good news? Finishing the AC means I'm halfway through the chemo - and my doc says that Taxol is "easier." I think this means less nausea/appetite issues, less exhaustion. It comes with its own set of wonderfulness, however, including, for some, peripheral neuropathy. Peripheral neuropathy is numbness and tingling of toes/fingers, etc. I'll be happy to pass on this side effect, thank you. Its other main side effect is hair loss...been there, done that.
Speaking of hair loss, there are two new events this week. First - and in spite of my pleas not to do it - Jim shaved his head in support of my baldness. He hasn't yet given me a picture, though we'll hopefully have one soon to show the world. You know Jim...it's all about him! (This is actually a joke reference to his facebook page, where he says this cancer is all about me! Go figure!). Suffice it to say, we both look much better with feathers - and Jim has not only shaved his head, but his mustache too. I put in an immediate request for both back...to no avail so far. This is the first time I've seen him bald and mustache-less...ever!
And, I've actually put my wig on. Am determined to wear it when I go out in public, as I'm told it looks better than scarves or hats. Around the house (where I've been most of this past week), it's too hard to wear it. Just try napping all day with a wig on! Light weight buffs/scarves are much easier to deal with. However, the wig is a new look and maybe the folks that do a big double take when I'm actually out in the world will not give me a second glance with it on.
Our huge thanks to Joy (one of my fabulous sisters (in-law)). She volunteered to drive me home from chemo last week - and if something could go wrong, it did. She had an accident in her newish car ($7,700 damage to car, none to Joy) on her way to San Mateo, had all flights cancelled out of Crescent City due to San Francisco fog when she was supposed to head home, couldn't rent a car here (everyone else wanted to drive away too after their flights were cancelled), had to coordinate all insurance/rental car/body work/etc. details remotely and more! Do I feel bad? Yes! Do I feel guilty? Oh yes! But, many thanks Joy! It was great to spend time with you...we do talk, don't we?
Next week, Jim's up for driving and we're going to take the birds for their semi annual feathers/nails trimming. They will like the ride, though not the boarding at the vets. I'll be happy to have them with, but not the extra driving to get them to the vet (another hour beyond San Mateo). We live a crazy life, I know.
Sending puppy thoughts to Jazmin.
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