Um, a new blog post, how about that? It's been almost a year since I last reported and almost a year since my very last treatment.
I decided to write today because my hair is starting to come in with color and not white! I was looking in the magnifying mirror over the weekend to pluck my eyebrows and by gosh, my white is speckled throughout with darker colored strands. I'm sure it's on the greyish side, but now this proves the chemo turned my hair white. I can curl it now too, which is kinda fun. Who would've guessed?
As soon as my port came out last April, there was a little while where I felt energetic and enthusiastic. Before long though, I found myself being overly emotional and depressed about everything I experienced that was not a happy event. It would and still does take me a long time to stop dwelling on sad events. During this time Hurricane Sandy wiped out many homes in New York and in the east, many 1st grade children and two teachers were killed by a gunman at Sandy Hook Elementary school in CT, President Obama was re-electred as President of the United States in the dirtiest campaign I can remember, a vet tech I've worked with was killed in a car accident along with her husband, 5 dogs and baby son who was due in only a week from the accident. A pope actually resigned due to all the horror and controversy associated with acts committed by church officials. I got hooked on following lost Shelties, especially one named Bandit from IN. He is still lost and it's been 10 months. I was offered a voluntary separation package from work but didn't take it. Heroes and heroines died, some from cancer, including breast cancer. Innocent animals were killed. My oldest daughter was divorced. Mean things were done to me at work without recognition or apology. It's even hard to write about these things because they have bothered me so very much.
I've had clear mammograms and seen Dr. Gray every 4 months. When I was in last month I got to talk to his assistant, Dr. Jan Davis instead. I always felt I had to act tough for Dr. Gray to get his praise for coming through cancer treatments so well. I felt I could talk candidly to Jan and wow, she was great, explaining that my feelings are totally normal. The theory is that while I was in treatments, me and my disease were being cared for. I was treated and checked every week for over a year, then suddenly the care stopped. But my fear that I might get cancer or something else unexpected like the cancer didn't go away. It's always there and always will be. I also realized how temporary everything is so any kind of loss and pain hurt even more. If it gets overwhelming where I can't deal with anything because of the pain I feel I am to let Dr . Gray know and he will do something for me. Sometimes I sure wish pot was legal and wouldn't get me fired from my job!
Activity, my dogs and especially competing with my dogs, taking care of Steve and the house, all help. My job is so unsatisfying I have to just think about it as a place I go to earn a paycheck and that's it. For quite awhile over the winter I seriously considered certifying Markie as an emotional service dog to help me through the days. I realized no one at my workplace would be interested in helping me feel better though so gave up on the idea. If I didn't have Steve to listen to me cry I think I would go crazy. He is the best husband in the world. My 5 dogs are the best dogs in the world too.
Yep, cancer certainly changed my life in ways I never imagined. I still don't get why me and continue to search for the lessons I was supposed to learn from this. I still don't get why I lived and others didn't. What's the meaning behind it all?
Tuesday, March 12, 2013
Tuesday, April 10, 2012
Marooned Without You & Other Random Thoughts
There was a movie starring Tom Hanks several years ago called Joe vs. the Volcano. At the beginning of the movie, Joe drags himself to work every day taking a log walk through a cold, muddy lot under grey skies into a dingy, grey office with very little light. When Joe finds out he has a terminal disease, he decides to quit his job and live it up but has to jump into a volcano as repayment for all the fun he's had at the end of his life. Don't worry, the ending is good but I won't spoil it in case you want to check it out. The ending song, Marooned Without You by Georges Delerue is really cool and still a favorite of mine: http://www.youtube.com/watch?v=lwfdJwv3k_A.
In many ways, the past 15 months have been like the beginning of Joe vs. the Volcano for me. When I was told I had breast cancer I couldn't fathom what life held for me. I took things one step at a time, first a surgery, then a 2nd followed by the discovery of the aggressive nature of the beast, installation of a hideous port-o-cath and the requirement to have 12 weekly chemo infusions, followed by 8 weeks of daily radiation, followed by about 6 more months of Herceptin, a drug that targets the over expression of the cell protein that made my cancer grow so quickly.
As I'd try to comprehend where the journey would lead, I always held out hope that things wouldn't be so bad. I was disappointed and even lied to along the way. At first I was told I'd only need surgery and radiation. My oncologist told me my hair would only get thin - but I lost it. I was told by my surgeon I would be back to normal within a few days but a large softball sized seroma under my arm caused me months of discomfort and the muscle weakness where several lymph nodes were removed continues. I was told to stay active, which I think I did pretty well at, but told if I did, the side effects of chemo wouldn't be so bad. To say I was as sick as a damned dog the whole time is putting it mildly. I was told that radiation wouldn't be bothersome, which it wasn't until the last couple of weeks when my whole left side was oozing, blistered, itchy and flaming to the point I just wanted to cut off my skin. I was told Herceptin had no side effects but a headache yet I have never struggled so much to get through daily life and cope with muscle & joint pain as I have these past 6 months.
As an athlete I tried to find contact with others who were going through or had gone through similar treatments as me. I never was successful at making the contact I wanted, even through Livestrong.com. I was looking for a coach, someone to help me through what to expect, how to cope. Yet, I did bump into an angel named Julie Dickson from Washington who competes in dog agility at my favorite venue in Lolo, MT. Julie just finished her Herceptin when I met her but "only" had to complete surgery and radiation, no chemo. However, Julie opted for a total mastectomy and was bravely competing just a couple of weeks after her implants, wow! Coincidently, Julie has a Sheltie too and a danged fast one at that. Though we don't know each other well, we have stayed in contact about each other's journey. I don't think I'd ever learned how to support another person well until I met Julie and was the benefit of her example. She never utters a discouraging word and always remembers when I'm having an important event. She may not be the athletic coach I hoped for but she truly has helped boost my spirits and hopefulness whenever I've needed it.
The point of that last bit is that I thought it would be a noble thing to try and compete through all of this. I had hopes at one point of getting Win, my heart dog qualified for AKC agility nationals. We came SSSSOOOO close. We needed 400 speed points and 6 double Q's. Despite missing about 1/3 of the year, we ended up with almost 600 speed points but just 5 double Q's. We would have had it if I hadn't been in treatment. There were at least half a dozen times where my fatigued body just couldn't make it to the right spot and I'd have one tiny error that would keep me from getting the points. Then, with two weekends left at indoor venues where I normally excel, my leg and foot went numb and my hip had crushing, debilitating pain that made it almost impossible to move. I can't even begin to explain how hard I tried to run my dog through that thinking of all the sports heroes who have won events despite severe pain - surviving on grit, mental toughness and good training. I tried everything; chiropractic adjustments, visualization, physical therapy, every sports cream known, compression shorts, yoga, acupressure, vitamin B6. I re-read all my mental management books, CDs and every blog I could think of. Nothing worked, not even a tiny bit. Those last two weekends we came close, but were unable to get that last double Q I needed. No injury was ever found in x-rays. I think it was the stinkin' Herceptin.
While Win, Lilli, King & I had fun at those competitions (King as my body guard for a few trips, not as a competitor), it was a crazy idea to get my hopes up that I could actually accomplish qualifying for a national event. This is what I needed a coach to help me with. I needed to know I should go about having fun, living a little but taking whatever came and whatever my body would allow. At the last trial I cried and cried when Win & I didn't make it. I didn't need that. Not at all. I sulked for days and actually contacted the chairperson of the event to see if there could possibly be any exception given to a person who had cancer during the qualifying period. She was sweet but said nope, not possible, sorry. It was a waste to go through such an upset when what I really needed was positive energy to make it the rest of the way through treatments. Between that huge disappointment and the mountain of delinquent work that engulfed me at my job, maybe that's why toward the end I've been so, so exhausted. I wanted to write this down for any other breast cancer athletes out there, or just any cancer survivors in general who could benefit from my experience.
So today was the last Herceptin treatment that hopefully I will ever have to have. At the beginning of chemo I couldn't imagine enduring the cold, impersonal-ness of the open area filled with easy chairs in rows, with no privacy, seeing everyone else try to hang on for dear life and seeing some not able to do so. I don't sit in an easy chair. It's just not what I do. I didn't know how I'd make it sitting there for 3 hours at a whack, I really didn't. At first I took a huge bag full of reading material, drinks, snacks, my favorite blankie, and a small DVD player with a movie. I wouldn't look at or talk to any of the other patients. During the steroid portion of my chemo, I couldn't do anything because I was so agitated by the treatment. My whole body felt like it was crawling with ants. Steve would rub my back and head during that part, thank God, and it would help me get through it. During the Taxol, I'd have to hold ice blocks in each hand and step on one with each foot so there wasn't much I could do besides sit and watch my movie. After a few weeks it began to be a little fun to pick out a movie that I'd been wanting to watch. Before I knew it the 12 weeks of chemo were over and Steve stopped coming with me for the subsequent 9 months of weekly Herceptin. It was then I began to get to know the nurses and other patients. There was Linda, another breast cancer patient. She would bring her son and each week he's make some sort of trinket or jewelry out of beads. I never did know the guy's name because he wasn't too talkative but he had a beautiful sable and while Queensland Heeler service dog who'd lay beside him for hours. She always made me miss my dogs so much and while I thought of disguising one as a service dog, I knew none of them would ever actually stand for laying next to me in a chair for hours. I one day met a co-worker and his wife with breast cancer there. She discovered hers a month or so before mine but was finished way ahead of me. Last, my neighbor and co-worker Liz began to come with her husband with Lymphoma. It was really nice having her there sometimes and I think she felt better having me there too. Her husband was also finished before me and is doing well. The nurses were awesome. At first there were a couple I didn't like so much but then as I watched them week after week literally running from patient to patient, I developed the utmost respect for their unending work.
Anabeth was my first nurse and the one who gave me the indoctrination training my first day. She didn't work very often the days I was there though but I got to see her last week and say good-bye and she seemed really happy I was finished. Mary was my favorite. Her husband is heart surgeon. I'm sure she doesn't have to work but she does because she believes in what she does. She has dogs and is a runner too so we had lots in common and she had some really helpful hints through the treatments. It seemed like Mary always tried to be the one to take care of me when I came in. Then one day while I was at a funeral for a dear friend's daughter, Mary walked in. We hugged and it made an otherwise horrible day better. Turns out Mary is best friends with my friend's other daughter. What a small world. We talked often about the death wondering what each other knew but it turned out neither one of us ever found out much information. Then there was Rochelle who always paid attention to my jewelry and hair as it grew back. She was the one who told me that Herceptin really sucks, moreso than doctors tend to let their patients know about. Glenda was another sweetie and dog lover. She always had a smile for everyone. Shelley was like a neighborhood friend, always chatty about things going on. They all seemed a bit surprised this was my last treatment today and laughed and laughed that I was hurrying right into surgery tomorrow to remove my port. I'll remember them always and hopefully see them now and then when I make periodic visits to see Dr. Gray.
As I got more comfortable with going to the chemo room for my weekly treatments I finally began to look forward to the down time to read, listen to a book, put together dog training ideas or most recently just take a nice nap. At the beginning I never could've imagined I'd look forward to sitting down for awhile. This may be something I'll have to try to hold on to. Relaxing once in awhile is a good thing.
This is an extra long post because on this last day of treatment, the memories are flooding back and I don't want to forget them. I know I blogged throughout the ordeal but it felt like I was always trying to be optimistic and hopeful because I should. There was much I never wrote but probably will as I remember it as time goes by.
Today I was in a crazy good mood and felt like Joe at the end of the movie. It's freakin' over and I'd jump into a volcano too, I feel that invincible today. They greyness is gone, wiped away and the beautiful technicolor world has returned. Steve and I went for a walk at lunch and it was spectacular. We saw a huge furry rock chuck, dozens of mule deer and two huge ravens next to their nest.....and I saw a Sandhill Crane flying over 12th Street on my way into the plant this morning. Seeing wildlife always feels like a good omen.
Surgery to remove the port is at 12:45 tomorrow so I'm eating like a pig tonight! Always happy to have an excuse to do that. Steve helped by bringing home some raspberry cheesecake brownies and some cherry chocolate yogurt. Yum!!! Don't know when I'll blog again but plan on it at some point. Signing off for now.....thanks so much for following me!
In many ways, the past 15 months have been like the beginning of Joe vs. the Volcano for me. When I was told I had breast cancer I couldn't fathom what life held for me. I took things one step at a time, first a surgery, then a 2nd followed by the discovery of the aggressive nature of the beast, installation of a hideous port-o-cath and the requirement to have 12 weekly chemo infusions, followed by 8 weeks of daily radiation, followed by about 6 more months of Herceptin, a drug that targets the over expression of the cell protein that made my cancer grow so quickly.
As I'd try to comprehend where the journey would lead, I always held out hope that things wouldn't be so bad. I was disappointed and even lied to along the way. At first I was told I'd only need surgery and radiation. My oncologist told me my hair would only get thin - but I lost it. I was told by my surgeon I would be back to normal within a few days but a large softball sized seroma under my arm caused me months of discomfort and the muscle weakness where several lymph nodes were removed continues. I was told to stay active, which I think I did pretty well at, but told if I did, the side effects of chemo wouldn't be so bad. To say I was as sick as a damned dog the whole time is putting it mildly. I was told that radiation wouldn't be bothersome, which it wasn't until the last couple of weeks when my whole left side was oozing, blistered, itchy and flaming to the point I just wanted to cut off my skin. I was told Herceptin had no side effects but a headache yet I have never struggled so much to get through daily life and cope with muscle & joint pain as I have these past 6 months.
As an athlete I tried to find contact with others who were going through or had gone through similar treatments as me. I never was successful at making the contact I wanted, even through Livestrong.com. I was looking for a coach, someone to help me through what to expect, how to cope. Yet, I did bump into an angel named Julie Dickson from Washington who competes in dog agility at my favorite venue in Lolo, MT. Julie just finished her Herceptin when I met her but "only" had to complete surgery and radiation, no chemo. However, Julie opted for a total mastectomy and was bravely competing just a couple of weeks after her implants, wow! Coincidently, Julie has a Sheltie too and a danged fast one at that. Though we don't know each other well, we have stayed in contact about each other's journey. I don't think I'd ever learned how to support another person well until I met Julie and was the benefit of her example. She never utters a discouraging word and always remembers when I'm having an important event. She may not be the athletic coach I hoped for but she truly has helped boost my spirits and hopefulness whenever I've needed it.
The point of that last bit is that I thought it would be a noble thing to try and compete through all of this. I had hopes at one point of getting Win, my heart dog qualified for AKC agility nationals. We came SSSSOOOO close. We needed 400 speed points and 6 double Q's. Despite missing about 1/3 of the year, we ended up with almost 600 speed points but just 5 double Q's. We would have had it if I hadn't been in treatment. There were at least half a dozen times where my fatigued body just couldn't make it to the right spot and I'd have one tiny error that would keep me from getting the points. Then, with two weekends left at indoor venues where I normally excel, my leg and foot went numb and my hip had crushing, debilitating pain that made it almost impossible to move. I can't even begin to explain how hard I tried to run my dog through that thinking of all the sports heroes who have won events despite severe pain - surviving on grit, mental toughness and good training. I tried everything; chiropractic adjustments, visualization, physical therapy, every sports cream known, compression shorts, yoga, acupressure, vitamin B6. I re-read all my mental management books, CDs and every blog I could think of. Nothing worked, not even a tiny bit. Those last two weekends we came close, but were unable to get that last double Q I needed. No injury was ever found in x-rays. I think it was the stinkin' Herceptin.
While Win, Lilli, King & I had fun at those competitions (King as my body guard for a few trips, not as a competitor), it was a crazy idea to get my hopes up that I could actually accomplish qualifying for a national event. This is what I needed a coach to help me with. I needed to know I should go about having fun, living a little but taking whatever came and whatever my body would allow. At the last trial I cried and cried when Win & I didn't make it. I didn't need that. Not at all. I sulked for days and actually contacted the chairperson of the event to see if there could possibly be any exception given to a person who had cancer during the qualifying period. She was sweet but said nope, not possible, sorry. It was a waste to go through such an upset when what I really needed was positive energy to make it the rest of the way through treatments. Between that huge disappointment and the mountain of delinquent work that engulfed me at my job, maybe that's why toward the end I've been so, so exhausted. I wanted to write this down for any other breast cancer athletes out there, or just any cancer survivors in general who could benefit from my experience.
So today was the last Herceptin treatment that hopefully I will ever have to have. At the beginning of chemo I couldn't imagine enduring the cold, impersonal-ness of the open area filled with easy chairs in rows, with no privacy, seeing everyone else try to hang on for dear life and seeing some not able to do so. I don't sit in an easy chair. It's just not what I do. I didn't know how I'd make it sitting there for 3 hours at a whack, I really didn't. At first I took a huge bag full of reading material, drinks, snacks, my favorite blankie, and a small DVD player with a movie. I wouldn't look at or talk to any of the other patients. During the steroid portion of my chemo, I couldn't do anything because I was so agitated by the treatment. My whole body felt like it was crawling with ants. Steve would rub my back and head during that part, thank God, and it would help me get through it. During the Taxol, I'd have to hold ice blocks in each hand and step on one with each foot so there wasn't much I could do besides sit and watch my movie. After a few weeks it began to be a little fun to pick out a movie that I'd been wanting to watch. Before I knew it the 12 weeks of chemo were over and Steve stopped coming with me for the subsequent 9 months of weekly Herceptin. It was then I began to get to know the nurses and other patients. There was Linda, another breast cancer patient. She would bring her son and each week he's make some sort of trinket or jewelry out of beads. I never did know the guy's name because he wasn't too talkative but he had a beautiful sable and while Queensland Heeler service dog who'd lay beside him for hours. She always made me miss my dogs so much and while I thought of disguising one as a service dog, I knew none of them would ever actually stand for laying next to me in a chair for hours. I one day met a co-worker and his wife with breast cancer there. She discovered hers a month or so before mine but was finished way ahead of me. Last, my neighbor and co-worker Liz began to come with her husband with Lymphoma. It was really nice having her there sometimes and I think she felt better having me there too. Her husband was also finished before me and is doing well. The nurses were awesome. At first there were a couple I didn't like so much but then as I watched them week after week literally running from patient to patient, I developed the utmost respect for their unending work.
Anabeth was my first nurse and the one who gave me the indoctrination training my first day. She didn't work very often the days I was there though but I got to see her last week and say good-bye and she seemed really happy I was finished. Mary was my favorite. Her husband is heart surgeon. I'm sure she doesn't have to work but she does because she believes in what she does. She has dogs and is a runner too so we had lots in common and she had some really helpful hints through the treatments. It seemed like Mary always tried to be the one to take care of me when I came in. Then one day while I was at a funeral for a dear friend's daughter, Mary walked in. We hugged and it made an otherwise horrible day better. Turns out Mary is best friends with my friend's other daughter. What a small world. We talked often about the death wondering what each other knew but it turned out neither one of us ever found out much information. Then there was Rochelle who always paid attention to my jewelry and hair as it grew back. She was the one who told me that Herceptin really sucks, moreso than doctors tend to let their patients know about. Glenda was another sweetie and dog lover. She always had a smile for everyone. Shelley was like a neighborhood friend, always chatty about things going on. They all seemed a bit surprised this was my last treatment today and laughed and laughed that I was hurrying right into surgery tomorrow to remove my port. I'll remember them always and hopefully see them now and then when I make periodic visits to see Dr. Gray.
As I got more comfortable with going to the chemo room for my weekly treatments I finally began to look forward to the down time to read, listen to a book, put together dog training ideas or most recently just take a nice nap. At the beginning I never could've imagined I'd look forward to sitting down for awhile. This may be something I'll have to try to hold on to. Relaxing once in awhile is a good thing.
This is an extra long post because on this last day of treatment, the memories are flooding back and I don't want to forget them. I know I blogged throughout the ordeal but it felt like I was always trying to be optimistic and hopeful because I should. There was much I never wrote but probably will as I remember it as time goes by.
Today I was in a crazy good mood and felt like Joe at the end of the movie. It's freakin' over and I'd jump into a volcano too, I feel that invincible today. They greyness is gone, wiped away and the beautiful technicolor world has returned. Steve and I went for a walk at lunch and it was spectacular. We saw a huge furry rock chuck, dozens of mule deer and two huge ravens next to their nest.....and I saw a Sandhill Crane flying over 12th Street on my way into the plant this morning. Seeing wildlife always feels like a good omen.
Surgery to remove the port is at 12:45 tomorrow so I'm eating like a pig tonight! Always happy to have an excuse to do that. Steve helped by bringing home some raspberry cheesecake brownies and some cherry chocolate yogurt. Yum!!! Don't know when I'll blog again but plan on it at some point. Signing off for now.....thanks so much for following me!
Saturday, April 7, 2012
Another Happy Birthday
Well, in a little over a week my cancer treatments will be over. My last herceptin infusion will be Tuesday and my chemo port-o-cath will be surgically removed on Wednesday. Will the journey be over though? I think not, even thought the cancer is gone. I still don't know how or where or why I got it....so maybe I'll do whatever it was to cause it again. The biggest thing I want to know is if I'll ever feel like "myself" again.
Who is myself anyway? I'm not sure I remember anymore. I do know since embarking on this, I never quite feel real....or it is authentic? I don't know how to describe it, I just know I don't feel normal anymore. Maybe it's that I'm a little freaked out all the time now. I'm always worried about something now it seems. Before this shit happened I had a fairly laid back persona. Even though it may not show that I'm freaked out all the time now, I am and I don't like the discomfort of it.
I don't know that I worry so much that the cancer will return but what the treatments have done to me. Everything - and I do mean EVERYTHING - takes a supreme amount of effort now. I have to push myself hard just to do the things I want and like to do so imagine how I'm struggling with things I don't like but have to do. I'm so sick and tired of the pain, stiffness and weakness in my body. And I'm so tired...... just so, so tired.
I read another person's blog who was on herceptin too and she said she lost her eyelashes and eyebrows during treatment. I sure don't have much in either case so maybe they will return when I'm off the drug. Yikes, I've been on this drug for a whole year. I wonder how long it will take my body to return to normal. I wonder if the aches and tiredness will improve. Or, I wonder if it's downhill from here as far as my physical abilities.....
On a good note I visited Dr. Eddie Jordan on Monday. It was the day after my 58th birthday so he wished me a happy one. I asked him how he knew it was my birthday, whether he remembered because it's April Fool's day or because he saw it in the file. He replied, "Sweetheart, I will NEVER forget singing happy birthday to you last year in the parking lot" then turned and quickly walked away like he was embarrassed. All the office workers turned and looked. I just laughed and left.
Then I wished there was a way I could stay friends with Dr. Jordan......I would always feel warm being able to stand in his light, plus he smiles when I talk about my doggies instead of getting that glazed over look that I see so often! But he will most likely end up being just another one of the legions of angels I will leave behind next week when my treatments are over. Sad that we can't somehow glean the good things from the ugly things that happen and hold onto them after the ugly parts are over. I'll really miss a couple of the chemo nurses too, namely Mary, Rochelle and Glenda, just like I still miss my friends Brandi and Jill from radiation. Brandi lives near me and I look for her all the time but never see her.
I wonder what life will be like in another year.
Who is myself anyway? I'm not sure I remember anymore. I do know since embarking on this, I never quite feel real....or it is authentic? I don't know how to describe it, I just know I don't feel normal anymore. Maybe it's that I'm a little freaked out all the time now. I'm always worried about something now it seems. Before this shit happened I had a fairly laid back persona. Even though it may not show that I'm freaked out all the time now, I am and I don't like the discomfort of it.
I don't know that I worry so much that the cancer will return but what the treatments have done to me. Everything - and I do mean EVERYTHING - takes a supreme amount of effort now. I have to push myself hard just to do the things I want and like to do so imagine how I'm struggling with things I don't like but have to do. I'm so sick and tired of the pain, stiffness and weakness in my body. And I'm so tired...... just so, so tired.
I read another person's blog who was on herceptin too and she said she lost her eyelashes and eyebrows during treatment. I sure don't have much in either case so maybe they will return when I'm off the drug. Yikes, I've been on this drug for a whole year. I wonder how long it will take my body to return to normal. I wonder if the aches and tiredness will improve. Or, I wonder if it's downhill from here as far as my physical abilities.....
On a good note I visited Dr. Eddie Jordan on Monday. It was the day after my 58th birthday so he wished me a happy one. I asked him how he knew it was my birthday, whether he remembered because it's April Fool's day or because he saw it in the file. He replied, "Sweetheart, I will NEVER forget singing happy birthday to you last year in the parking lot" then turned and quickly walked away like he was embarrassed. All the office workers turned and looked. I just laughed and left.
Then I wished there was a way I could stay friends with Dr. Jordan......I would always feel warm being able to stand in his light, plus he smiles when I talk about my doggies instead of getting that glazed over look that I see so often! But he will most likely end up being just another one of the legions of angels I will leave behind next week when my treatments are over. Sad that we can't somehow glean the good things from the ugly things that happen and hold onto them after the ugly parts are over. I'll really miss a couple of the chemo nurses too, namely Mary, Rochelle and Glenda, just like I still miss my friends Brandi and Jill from radiation. Brandi lives near me and I look for her all the time but never see her.
I wonder what life will be like in another year.
Saturday, February 18, 2012
To the Needy People & Other Thoughts
I think it's strange a few people have asked me if I'm mad at them lately. Gosh, I'm not mad at anyone, not even the people who talk crap about me behind my back. True, there are certain people in my life who bug me but I've been working really hard lately to forgive everyone. I guess in the process, I'm not as friendly as I used to be.
This is the thing....while I may look like I'm back to normal, I'm discovering there will never again be a "normal" for a cancer survivor. Having cancer hits too close to the fact that life is a gift we have for only a short time. Life is sort of like an Advent calendar, only we don't know when the last little door will open. I took the fact that there would even be little doors for granted. Now I'm trying to treasure each one and use the gift of every day to it's fullest.....and that means I'm working all the time. Much of the work I do is unseen like working on my attitude, planning how to accomplish everthing I need and want to do, working on my relationships, etc.
It seems like every minute of every day is full. There are still lots of doctor's appointments and 8 more weeks of Herceptin infusions. No one did my job (or very little of it) while I was on disability so I'm now being pushed to catch up by the end of next month. I think I'm getting there though! The work is taxing at best. My mind is usually numb after a day of reviewing what people have done to correct events at my workplace. I'm also trying hard to fit in time for me to workout and train my dogs and take a lesson once a week. Then there's laundry, meals, bills, taxes, housecleaning, dog grooming, dog clean-up, shopping......and somewhere in there is my poor husband, kids and grandkids! Luckily Steve has found something to keep him entertained training for a Spartan competition. I sure love that man of mine. I don't know of any other man who could have been so understanding.
And speaking of doctors, I finally had my appointment with Dr. Gray and we discussed this hip & leg pain with the numbness and tingling. I showed him where it was and he abruptly said it was not the Herceptin but seemed like it might be a back problem. He immediately ordered an MRI and I went the next day. By the way, if you ever have to go all the way inside an MRI machine laying on your back, don't open your eyes or think about what you'd do if you needed to hurry and get out! Once I relaxed, the machine noises sounded like some weird concert and I almost went to sleep. When the results came this week, sure enough I have bulging disks especially at L3 & L4 with some arthritic changes all the way down. The bulging is causing narrowing of the spinal thecal sac. The internet says the treatment is mostly time, core strengthening and not doing aggravating things. Surgery is only warranted in severe cases, which mine is not. The pain and tingling is always there but at least I can walk without limping now and sleep. I have an appointment with the spine doctor next week to see what else I can do. He's a sports specialist too so I'll ask him if there's anything I can do to stop running like a Grandma!
The funny thing about all that is how the osteopath I went to never even offered to order an MRI when he couldn't find anything on X-ray, but the oncologist ordered it right up. I have insurance. I don't get why we have to push doctors so hard to diagnose things sometimes.
My hair no longer looks like it's growing back from chemo. It just looks like short hair. My long time hairdresser cut it about 3 weeks ago so it finally has some style. She added a straightening perm too, which really helped tame the nappy curls. Then last week I added some funky color chunks....sort of a golden brown with a small stripe of magenta. I love the look! We'll see how long I can maintain the cost of upkeep though. And fixing it every day is quite a process, much more intensive than the old pull back into a ponytail style I used to wear.
My hairdresser's mom died of breast cancer when she was a teenager. Having her in my life has really helped get through this bump in the road. She understands but doesn't baby me. Unfortunately her aunt was in hospice last week from another rare cancer form. She is always so bold and strong but I could tell she was breaking over her aunt. I'm praying the beast will somehow decide not to prey upon my friend too.....
So to the needy people who think I'm mad at them, I'm very sorry if you feel that way. Nothing could be farther from the truth. I hafta take care of my own self now, that's all. Enjoy your day!
This is the thing....while I may look like I'm back to normal, I'm discovering there will never again be a "normal" for a cancer survivor. Having cancer hits too close to the fact that life is a gift we have for only a short time. Life is sort of like an Advent calendar, only we don't know when the last little door will open. I took the fact that there would even be little doors for granted. Now I'm trying to treasure each one and use the gift of every day to it's fullest.....and that means I'm working all the time. Much of the work I do is unseen like working on my attitude, planning how to accomplish everthing I need and want to do, working on my relationships, etc.
It seems like every minute of every day is full. There are still lots of doctor's appointments and 8 more weeks of Herceptin infusions. No one did my job (or very little of it) while I was on disability so I'm now being pushed to catch up by the end of next month. I think I'm getting there though! The work is taxing at best. My mind is usually numb after a day of reviewing what people have done to correct events at my workplace. I'm also trying hard to fit in time for me to workout and train my dogs and take a lesson once a week. Then there's laundry, meals, bills, taxes, housecleaning, dog grooming, dog clean-up, shopping......and somewhere in there is my poor husband, kids and grandkids! Luckily Steve has found something to keep him entertained training for a Spartan competition. I sure love that man of mine. I don't know of any other man who could have been so understanding.
And speaking of doctors, I finally had my appointment with Dr. Gray and we discussed this hip & leg pain with the numbness and tingling. I showed him where it was and he abruptly said it was not the Herceptin but seemed like it might be a back problem. He immediately ordered an MRI and I went the next day. By the way, if you ever have to go all the way inside an MRI machine laying on your back, don't open your eyes or think about what you'd do if you needed to hurry and get out! Once I relaxed, the machine noises sounded like some weird concert and I almost went to sleep. When the results came this week, sure enough I have bulging disks especially at L3 & L4 with some arthritic changes all the way down. The bulging is causing narrowing of the spinal thecal sac. The internet says the treatment is mostly time, core strengthening and not doing aggravating things. Surgery is only warranted in severe cases, which mine is not. The pain and tingling is always there but at least I can walk without limping now and sleep. I have an appointment with the spine doctor next week to see what else I can do. He's a sports specialist too so I'll ask him if there's anything I can do to stop running like a Grandma!
The funny thing about all that is how the osteopath I went to never even offered to order an MRI when he couldn't find anything on X-ray, but the oncologist ordered it right up. I have insurance. I don't get why we have to push doctors so hard to diagnose things sometimes.
My hair no longer looks like it's growing back from chemo. It just looks like short hair. My long time hairdresser cut it about 3 weeks ago so it finally has some style. She added a straightening perm too, which really helped tame the nappy curls. Then last week I added some funky color chunks....sort of a golden brown with a small stripe of magenta. I love the look! We'll see how long I can maintain the cost of upkeep though. And fixing it every day is quite a process, much more intensive than the old pull back into a ponytail style I used to wear.
My hairdresser's mom died of breast cancer when she was a teenager. Having her in my life has really helped get through this bump in the road. She understands but doesn't baby me. Unfortunately her aunt was in hospice last week from another rare cancer form. She is always so bold and strong but I could tell she was breaking over her aunt. I'm praying the beast will somehow decide not to prey upon my friend too.....
So to the needy people who think I'm mad at them, I'm very sorry if you feel that way. Nothing could be farther from the truth. I hafta take care of my own self now, that's all. Enjoy your day!
Thursday, January 12, 2012
This Whole Thing Bites!!!!
It has been a long time since I've blogged about my breast cancer journey. I went back to work on August 31, worked from home for about 6 weeks, then began going into the office mid Oct, 2011. Radiation was completed the 1st week of Oct and my hair is about 1.5" long now. I get my 1st haircut in a week! Radiation after burn was horrific and again, something the doctor was not forthright about. I was told the main side effect would be fatigue, which I experienced none of at all. However, the afterburn was so bad, I could barely function for a few days. My breast was raw, oozing, peeling and SORE at the worst time when I was trying to wrap up my last double Q for agility nationals. But more about all that later.
From FDA.com:
This drug is giving me a damned hard time! About the end of Oct, I suddenly experienced severe pain in my left hip, butt, leg & foot. I felt a stabbing, burning pain in my joints as well as numbness and tingling down the outside of leg that went down to my foot, wrapped around the bottom of my foot and into the inside the ball of my foot. I thought I'd hurt myself moving heavy equipment around in my dog agility barn getting ready for a seminar I held. I went to the orthopedic doctor, Dr. Amann, right away because I could barely walk and could not sleep. It was funny I could still run but afterward, the pain would be even worse.
Dr. Amann x-rayed my hips and found nothing except a slight bit of arthritis starting. He sent me home with a prescription for Diclofenac 75 mg (which I was already taking anyway for arthritis) and RX for physical therapy. Well, I couldn't go to PT right away. Too much going on at work and then we went to Tucson, AZ for a couple of weeks at Thanksgiving. I didn't get in to PT until the 2nd week in Dec. By then the pain was excruciating to say the least. I could barely walk, even a few feet.
I also saw an alternative practicioner named Lorrie Harper and my good ole' chiropracter, Ryan Atkinson. Lorrie figured out my pelvis was tilted and that if I would suck in my stomach, the nerve pain would reduce or stop. She gave me some exercises to do that emphasized stretching. Dr. Atkinson readjusted my pelvis and OMG did that ever hurt like hell!!! I'm still going every couple of weeks. Each time he says it's more and more in alignment. Nate Goff, the physical therapist had me re-x-rayed and we confirmed my right leg is 1/2" shorter than my left. That is something I have been told before, now it's confirmed. So I'm now wearing a bit of heel lift in my shoes, which really seems to help. Nate also gave me tons of exercises to improve my strength, balance and flexibility. Going to his sessions has really helped me be motivated to get into better shape. He almost seems like more of a personal trainer and has some great knowledge. He really complimented me on my overall leg strength for my age :-) and that was nice. In addition I've purchased some expensive new running shoes to use for my dog agility training and competitions. They are supposed to be the A #1 best for people with pain and who need some sort of orthotics. Can't wait 'til they arrive - they're called GoLite Women's Lime Lights.
Despite all those actions....the pain, tingling and numbness are all still there. It's more bearable, but it does not feel like things have healed at all. I bought a book showing a woman's internal anatomy to see if I could improve on the exercises I'm doing. I was reading that book at my infusion this week. Nurse Rochelle saw it and reminded me that Herceptin does a number on your body, perhaps much more so than patients are lead to believe when undergoing treatment. She said they have looked up Herceptin effects and confirmed it can create more problems for some people than thought. I was merely told by Dr. Gray it could possibly result in headaches. I have been complaining about muscle aches all along and told it is just part of the treatment and will get better. What really concerns me is that I wasn't told what can happen to a person's muscles, tendons nerves and joints. Are they more prone to injury? Should I not have been moving heavy equipment at all? Should I not have been training my dog and competing? Should I not have been doing certain exercises? Well, here is what the FDA website says about Herceptin in relation to my issues:
From Prescribing Information: The most common adverse reactions in patients receiving Herceptin in the adjuvant . . .
Exposure to Herceptin across three randomized, open-label studies reflect exposure to Herceptin in 1678 patients; the median treatment duration was 51 weeks and median number of infusions was 18. Among the 3386 patients enrolled in Study 3, the median age was 49 years (range: 21 to 80 years), 83% of patients were Caucasian, and 13% were Asian with the following results:
breast cancer setting are fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, dyspnea [shortness of breath], rash, neutropenia [low white blood cells], anemia, and myalgia [muscle pain].
From FDA.com:
Drug Name(s) | HERCEPTIN (Brand Name Drug) |
Active Ingredient(s) | TRASTUZUMAB |
Company | GENENTECH |
This drug is giving me a damned hard time! About the end of Oct, I suddenly experienced severe pain in my left hip, butt, leg & foot. I felt a stabbing, burning pain in my joints as well as numbness and tingling down the outside of leg that went down to my foot, wrapped around the bottom of my foot and into the inside the ball of my foot. I thought I'd hurt myself moving heavy equipment around in my dog agility barn getting ready for a seminar I held. I went to the orthopedic doctor, Dr. Amann, right away because I could barely walk and could not sleep. It was funny I could still run but afterward, the pain would be even worse.
Dr. Amann x-rayed my hips and found nothing except a slight bit of arthritis starting. He sent me home with a prescription for Diclofenac 75 mg (which I was already taking anyway for arthritis) and RX for physical therapy. Well, I couldn't go to PT right away. Too much going on at work and then we went to Tucson, AZ for a couple of weeks at Thanksgiving. I didn't get in to PT until the 2nd week in Dec. By then the pain was excruciating to say the least. I could barely walk, even a few feet.
I also saw an alternative practicioner named Lorrie Harper and my good ole' chiropracter, Ryan Atkinson. Lorrie figured out my pelvis was tilted and that if I would suck in my stomach, the nerve pain would reduce or stop. She gave me some exercises to do that emphasized stretching. Dr. Atkinson readjusted my pelvis and OMG did that ever hurt like hell!!! I'm still going every couple of weeks. Each time he says it's more and more in alignment. Nate Goff, the physical therapist had me re-x-rayed and we confirmed my right leg is 1/2" shorter than my left. That is something I have been told before, now it's confirmed. So I'm now wearing a bit of heel lift in my shoes, which really seems to help. Nate also gave me tons of exercises to improve my strength, balance and flexibility. Going to his sessions has really helped me be motivated to get into better shape. He almost seems like more of a personal trainer and has some great knowledge. He really complimented me on my overall leg strength for my age :-) and that was nice. In addition I've purchased some expensive new running shoes to use for my dog agility training and competitions. They are supposed to be the A #1 best for people with pain and who need some sort of orthotics. Can't wait 'til they arrive - they're called GoLite Women's Lime Lights.
From Prescribing Information: The most common adverse reactions in patients receiving Herceptin in the adjuvant . . .
Exposure to Herceptin across three randomized, open-label studies reflect exposure to Herceptin in 1678 patients; the median treatment duration was 51 weeks and median number of infusions was 18. Among the 3386 patients enrolled in Study 3, the median age was 49 years (range: 21 to 80 years), 83% of patients were Caucasian, and 13% were Asian with the following results:
Musculoskeletal & Connective Tissue Disorders
Arthralgia 137 (8%)
Back Pain 91 (5%)
Myalgia 63 (4%)
Bone Pain 49 (3%)
Muscle Spasm 46 (3%)
Nervous System Disorders
Headache 162 (10%)
Paraesthesia 29 (2%)
Paraesthesia is a sensation of tingling, pricking, or numbness of the skin with no apparent physical cause, more generally known as the feeling of pins and needles. Well duh, I have lots of those symptoms! So although the percentage of people experiencing the symptoms I have is not great, they are still symptoms people have experienced while using Herceptin none the less. I see Dr. Gray again in a couple of weeks and he is going to get an earful about this. Here I have been wondering whether I had a severe injury, not to mention the loss of time, expense and heartache I've endured trying to fix something that may not be fixable at all.
I should be done with Herceptin in another 4 months. The FDa website also said I should be getting echocardiograms every 3 months while on treatment so I'm one behind. I'll let Dr. Gray know about that too. I'm praying the symptoms of this drug will disappear as quickly as the ones from chemo did and that it ends up working to get rid of the Her-2 overexpression (another to ask Dr. Gray about, how we'll know this worked). THIS WHOLE THING BITES!!!!!!!
breast cancer setting are fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, dyspnea [shortness of breath], rash, neutropenia [low white blood cells], anemia, and myalgia [muscle pain].
Sunday, August 28, 2011
HAIR
My hair is coming in thick now! Up to now I've had the Woodstock pin cusion look with very thin, whitish baby-fine hair about 1/20th its normal thickness. But just the last couple of days it looks like all my hair folicles are back to work. My whole head is thick with hair that has some color, not sure exactly what color yet tho, but am betting it's probably some shades of grey. At least it isn't white, which is what I was afraid of. I'm still determined not to color it though, well at least not all of it like I did before. The other really cool hair-related thing going on is Winston, my Sheltie, is getting a thicker coat too! Due to some health issues, he started losing his tail about 4 years ago, then gradually lost all of his undercoat. His outer coat was still long but fine, not like a Sheltie is supposed to have. Funny and cool that his formerly full, beautiful coat is returning right at the same time my hair is growing back. We'll both be warm this winter!
Dr. Gray wrote a letter to my employer stating he felt I could return to work next week if I worked from home through the end of my radiation treatments. There was some sort of to-do over it where the company staff had to approve my working from home since there was no such shift. Apparently it was approved, but not until I see the company doctor first. So I'll do that in a couple of days. I hafta wonder what the company doctor could possibly be looking for when my cancer specialist already knows my health inside and out right now. The fun with work begins......I can only image what surprises I'll find when I start doing my job again!
Radiation is going OK. It's a pain to go every day but I must say my appointments are always right on time with no delays like there usually are over at the infusion center. My skin seems fine so far. I'm still using the 99% aloe gel after each treatment so hopefully it's helping. Tuesdays are usually a little tense because I get my Herceptin at the infusion center 1st, then run over to the hospital a block away for radiation. It seems like I barely make the radiation appointment by the skin of my teeth.
I still do wear out but have learned to pace myself if there's something important I need to do later in the day. If anything, I can't figure out why my joint pain is so bad right now. It seems like the severe muscle pain I previously had has gravitated to my joints instead. I'm still exercising so who knows. Maybe it's just age but I think it's something I need to mention to Dr. Gray. I still have the remnants of the chemo rash but it's gradually fading away. I still get bloody noses almost every day so am thinking those must come from the Warfarin I have to take to keep my infusion port clear. The dizziness and light senstivity are pretty much gone but boy is my appetite ever back! Having to really watch myself because I could balloon up quick as hungry as I feel all the time now.
'til next time.....
Dr. Gray wrote a letter to my employer stating he felt I could return to work next week if I worked from home through the end of my radiation treatments. There was some sort of to-do over it where the company staff had to approve my working from home since there was no such shift. Apparently it was approved, but not until I see the company doctor first. So I'll do that in a couple of days. I hafta wonder what the company doctor could possibly be looking for when my cancer specialist already knows my health inside and out right now. The fun with work begins......I can only image what surprises I'll find when I start doing my job again!
Radiation is going OK. It's a pain to go every day but I must say my appointments are always right on time with no delays like there usually are over at the infusion center. My skin seems fine so far. I'm still using the 99% aloe gel after each treatment so hopefully it's helping. Tuesdays are usually a little tense because I get my Herceptin at the infusion center 1st, then run over to the hospital a block away for radiation. It seems like I barely make the radiation appointment by the skin of my teeth.
I still do wear out but have learned to pace myself if there's something important I need to do later in the day. If anything, I can't figure out why my joint pain is so bad right now. It seems like the severe muscle pain I previously had has gravitated to my joints instead. I'm still exercising so who knows. Maybe it's just age but I think it's something I need to mention to Dr. Gray. I still have the remnants of the chemo rash but it's gradually fading away. I still get bloody noses almost every day so am thinking those must come from the Warfarin I have to take to keep my infusion port clear. The dizziness and light senstivity are pretty much gone but boy is my appetite ever back! Having to really watch myself because I could balloon up quick as hungry as I feel all the time now.
'til next time.....
Wednesday, August 17, 2011
Radiation Update
I started radiation this week. Last week I spent a day getting measured for my computer program. After it was over there were several little bull's eyes drawn all over my upper body with clear round band aids put over them. I was told to leave them there until this week and it wasn't hard to do. The funny thing is I kept getting told the arm on my surgery side would be very sore after the measurement session because I would have to hold both arms over my head the whole time. I was instructed to take extra strength Tylenol and do lots of stretches ahead of time. Well, while I was laying on the table they custom fitted a foam pillow to my head and arms that I'll use for all my future sessions and yes, my arms were over my head holding on to some handles. I had to lie still for almost an hour like that but it was absolutely no work at all for me...what kind of wuss's usually do this? I guess I can understand if a person had just had a mastectomy or something - but my surgery was over 5 months ago and it was only a lumpectomy, plus I'm totally healed. I guess I just hate it when patients get treated with a one-size-fits all approach.
So, now I'm thinking/hoping maybe their caution about feeling tired toward the end of treatments will also not apply to me. We shall see!
When the computer program was finished they called and set up another hour long appointment for Monday this week, then scheduled the rest of my daily appointments for 2:45 pm. More measurements and then the stickers were removed. In their place I received a little tattooed dot. The gal doing the tattooing was very interested in the tattoo of Win on my arm and wants to get something with horse shoes done on her foot. I have a feeling this will be an ongoing topic of conversation with her! The radiation only took a few minutes and was unnoticeable. I stopped at the health food store on the way home and got some 99% aloe vera gel. My friend, Pat, who went through this last year said she put it on right after each treatment and never got a burn.
Tuesday I went in for another treatment but barely made it in time because I was late coming from my herceptin infusion. One of the tattooed dots wasn't dark enough so I had to get it re-done. Again no problems. I headed home, got dinner ready and then went to train Win at my friend, Darlene's house. That went really well!
How I'm feeling now: I'm pretty much worn out by the end of each day. I have learned to pace myself if I have something important to do late afternoon or evening since I've had to miss a few things due to just not being able to move! The nurses at Dr. Gray's say it will be about 6 months before this improves. My muscle pain is much improved and each week my red & white blood cells are getting closer to normal - they said they were almost there yesterday. The skin rash is much better - still there, but getting lighter all the time and the skin texture is beginning to soften. Below are some pictures. Still get bloody noses every day but that's probably from the warfarin, which I'll be on until I'm finished with Herceptin next April. The best part is the stupid diarrhea is gone! I feel like cooking again and am loving being able to enjoy the veggies from my garden. The 3 lb I gained are gone now too, now that I'm back on my clean diet. Chemo brain even seems to have improved although I did go to the wrong place to train last night for no good reason!
Hair report: It's finally starting to noticeably fill in. It's still like baby hair or peach fuzz though and has no color at all. The hair on the top of my head was probably 1/2" long but SO thin and sticking straight up, so I re-buzzed it yesterday. It was getting pretty curly around my ears, but again, thin-thin-thin. When I looked at the back in the mirror on Sunday I could definitely see the back growing in but more around the sides and bottom. The upper back is still pretty bare so I kind of look like an old man with that bald spot just on the upper back of his head. I think I'll just keep buzzing it until I see it getting thick enough, probably another couple of months. I'm going to resist coloring it to finally see what color it is now, and see if I can live with grey hair. I think I can do it! I just know if I don't, I'll be stuck in the endless cycle of coloring it every 3 weeks again. And besides that, hair color can be toxic and I don't need to add any more toxins to my now healthy bod!!
So, now I'm thinking/hoping maybe their caution about feeling tired toward the end of treatments will also not apply to me. We shall see!
When the computer program was finished they called and set up another hour long appointment for Monday this week, then scheduled the rest of my daily appointments for 2:45 pm. More measurements and then the stickers were removed. In their place I received a little tattooed dot. The gal doing the tattooing was very interested in the tattoo of Win on my arm and wants to get something with horse shoes done on her foot. I have a feeling this will be an ongoing topic of conversation with her! The radiation only took a few minutes and was unnoticeable. I stopped at the health food store on the way home and got some 99% aloe vera gel. My friend, Pat, who went through this last year said she put it on right after each treatment and never got a burn.
Tuesday I went in for another treatment but barely made it in time because I was late coming from my herceptin infusion. One of the tattooed dots wasn't dark enough so I had to get it re-done. Again no problems. I headed home, got dinner ready and then went to train Win at my friend, Darlene's house. That went really well!
How I'm feeling now: I'm pretty much worn out by the end of each day. I have learned to pace myself if I have something important to do late afternoon or evening since I've had to miss a few things due to just not being able to move! The nurses at Dr. Gray's say it will be about 6 months before this improves. My muscle pain is much improved and each week my red & white blood cells are getting closer to normal - they said they were almost there yesterday. The skin rash is much better - still there, but getting lighter all the time and the skin texture is beginning to soften. Below are some pictures. Still get bloody noses every day but that's probably from the warfarin, which I'll be on until I'm finished with Herceptin next April. The best part is the stupid diarrhea is gone! I feel like cooking again and am loving being able to enjoy the veggies from my garden. The 3 lb I gained are gone now too, now that I'm back on my clean diet. Chemo brain even seems to have improved although I did go to the wrong place to train last night for no good reason!
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| Chemo rash |
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| Chemo rash |
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| Hair at 2 weeks post chemo |
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