The other day, an acquaintance said, "Isn't it nice you don't have to worry about your cancer anymore?"
With a deep breath and patience, I explained that I am still concerned about my cancer and am still undergoing treatment...you just can't see it.
Just because I had surgery over a year ago that does not mean I am not concerned that my cancer may reoccur, that it could be somewhere else in my body, that it could come back as leukemia or appear in my other breast or that I really may be a survivor once I get to the five year mark. But that does not mean I am free and clear or that it is gone.
Once you have cancer, there is always the possibility it will return.
Granted, it does not seem to have the ominous connotation that it once had. But it still isn't something you forget about...not ever. It changes you.
I spent my afternoon seeing the movie "50-50" today which deals with a young man of 28 finding out that he has a very rare form of cancer. There were some over the top moments regarding language and situations, but some of the fear, the reactions of those around him, the uncertainty, and some of the situations I fully understood. I found that I had tears more times that I wanted because "I remembered how it was", still is, will be.
Whenever my left breast aches, first I remember that my surgeon and my oncologist told me that would be something I will likely experience for the rest of my life. Sometimes it is nothing, sometimes it is a reminder of the aches I felt last March when I decided to make an appointment to see what was causing it, and other times, it brings concern that maybe the tentacles are reaching out and the lobular carcinoma is growing once again.
My HER2 status was +3 positive from the biopsy sample and +1 from the surgery. Leaves an uncertainty, the whole situation was emotionally unnerving and a comedy of errors so I can't be certain anything is as it is. An unreal fear most likely, but a fear none the less.
This past year has been one of confusion, uncertainty, of others questioning my ability to do things I have always done because I get tired or ill, wrestling with my own fatigue or sleeplessness, and the indecisiveness that comes from not knowing what I want for my future let alone the insecure times when I doubt I will have one. There has been frustration over the overwhelming medical expenses that some thought were "covered by Medicare" as well as my insurance. I am five years too young for that and it has eaten up some of my savings that I was blessed to have but hoped not to have to use quite yet. I have a lack of direction more noticable at times and when my brother asked about what I wanted out of life, I found myself at a complete loss.
Right now, just to be alive, and able, and capable, and loved, and cared about and able to care and love others and above all, be grateful for more time to just be here period!
To see another sunrise and sunset, to enjoy the wind as it whips my hair about and to feel the rain on my face that still reminds me of home. To have my dog greet me with a wagging tail no matter how long it has been and to hear the birds outside the window still singing as the leaves turn to fall colors and the squirrels compete with the feathery beauties for the sunflower seeds in the feeders. To feel the love in the hugs from friends, to sing with others who love music, to enjoy the laughter that surrounds me and to also feel relief after tears.
I have a T shirt I got a Mayo and I can be found wearing it on my tougher days:
"What Cancer Cannot Do...
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit"
So for me...
"Where there is happiness, there is hope;
where there is laughter, there is joy;
where there is kindness, there is gratitude
where there is comfort, there is love.
And with all these the strength to make a difference."
Donalee 2011
Sunday, October 2, 2011
Monday, July 4, 2011
It's been a little more than a month...
I got back on my Arimidex a little over a month ago. I guess this is just going to be how life is. I actually found an article today with some thoughts I agree with and who just said it as it is...Arimidex is being on chemotherapy for 5 years rather than the intense hit of several months.
I have noticed I am tired more easily and have actually fallen asleep in my chair on occasion. Virtually unheard of for me!
It says that one of the RARE side effects involves losing your hair. Well... my lobular carcinoma was already a 10% chance so of course, I am again having more come out with each brushing and in the shower. It had gotten thicker again after that two and a half month stoppage, even my hairdresser noticed.
No, I am not an exercise nut, but I have been more active. My appetite has been lessening all month, even with a wonderful trip to Disney World, I didn't feel like eating as much as I should have.
The other night while in the car with my brother and his partner, I began to cough again. Usually happens late at night before I fall asleep. He noticed the sound of it right away and said, "Hmmm that sounds familiar." I told him it had been occuring at night recently but that was all, no other symptoms or reoccurence during the daytime. We are watching as that cough nearly caused me to drop out of the Chorale and sent me to urgent care last March!
But then there were the words of the author of the article I just read:
"Yes, while it doesn’t always get promoted that intention, Arimidex is considered a different form of chemotherapy, albeit one prolonged for five years. The only difference is that Arimidex doesn’t cause the severe symptoms real chemo does, except for rare incidents of hair loss. Despite rumors to the contrary, hair loss is in a small minority of this drug’s users. The biggest problem in using Arimidex is in its supposed tendency to weaken bones–hence leading to eventual osteoporosis or arthritic conditions." My knee and top of my foot have been giving me a good deal of trouble lately. I am hoping that yoga and a bit more exercise along with tennis shoes with good support even in the summer will help.
Then there was the potential of dealing with the second most popular side conclude of the drug. As with many pharmaceuticals, fatigue is already a common problem. Arimidex, however, was known to cause severer fatigue, nearly equivalent to what you’d expect taking chemotherapy. Yep, it is back. I have noticed that being tired and fighting the fatigue sometimes makes me really emotional and at times, quite unreasonable, which my family and friends can attest to lately. Thank God for their incredible support and patience!!!
"...this one of the most great cancer drugs on the market today as a more comfortable alternative to chemo" And I am grateful!
"With estrogen being the equivalent of Al Qaeda in an older woman’s body, having a drug that’s truly successful at keeping breast cancer at bay is a major breakthrough in the erratic pharmaceutical industry....But it’s a drug that you’ll have to choose for five years while not destroying any sense of quality to that time frame of your life." Therein lies the danger and the challenge.
I continue to learn and hope I will stay healthy, not break any bones, and manage to have quality in my life. I know the people helping me along are already the most treasured for their watchfulness, support and love keep me swallowing those pills one more day every morning.
I have noticed I am tired more easily and have actually fallen asleep in my chair on occasion. Virtually unheard of for me!
It says that one of the RARE side effects involves losing your hair. Well... my lobular carcinoma was already a 10% chance so of course, I am again having more come out with each brushing and in the shower. It had gotten thicker again after that two and a half month stoppage, even my hairdresser noticed.
No, I am not an exercise nut, but I have been more active. My appetite has been lessening all month, even with a wonderful trip to Disney World, I didn't feel like eating as much as I should have.
The other night while in the car with my brother and his partner, I began to cough again. Usually happens late at night before I fall asleep. He noticed the sound of it right away and said, "Hmmm that sounds familiar." I told him it had been occuring at night recently but that was all, no other symptoms or reoccurence during the daytime. We are watching as that cough nearly caused me to drop out of the Chorale and sent me to urgent care last March!
But then there were the words of the author of the article I just read:
"Yes, while it doesn’t always get promoted that intention, Arimidex is considered a different form of chemotherapy, albeit one prolonged for five years. The only difference is that Arimidex doesn’t cause the severe symptoms real chemo does, except for rare incidents of hair loss. Despite rumors to the contrary, hair loss is in a small minority of this drug’s users. The biggest problem in using Arimidex is in its supposed tendency to weaken bones–hence leading to eventual osteoporosis or arthritic conditions." My knee and top of my foot have been giving me a good deal of trouble lately. I am hoping that yoga and a bit more exercise along with tennis shoes with good support even in the summer will help.
Then there was the potential of dealing with the second most popular side conclude of the drug. As with many pharmaceuticals, fatigue is already a common problem. Arimidex, however, was known to cause severer fatigue, nearly equivalent to what you’d expect taking chemotherapy. Yep, it is back. I have noticed that being tired and fighting the fatigue sometimes makes me really emotional and at times, quite unreasonable, which my family and friends can attest to lately. Thank God for their incredible support and patience!!!
"...this one of the most great cancer drugs on the market today as a more comfortable alternative to chemo" And I am grateful!
"With estrogen being the equivalent of Al Qaeda in an older woman’s body, having a drug that’s truly successful at keeping breast cancer at bay is a major breakthrough in the erratic pharmaceutical industry....But it’s a drug that you’ll have to choose for five years while not destroying any sense of quality to that time frame of your life." Therein lies the danger and the challenge.
I continue to learn and hope I will stay healthy, not break any bones, and manage to have quality in my life. I know the people helping me along are already the most treasured for their watchfulness, support and love keep me swallowing those pills one more day every morning.
Wednesday, June 1, 2011
Trial run to see if the medicine is ok
Earlier I wrote and told you that I had chosen to no longer take my Arimidex. I did stop that next day. My health improved, my energy level improved, and things were looking up. My project partner and I completed two separate concert series and now that the work is done, I am getting some time to really look at how things are going this Spring.
My hormone levels have increased and hair growth, emotions, weight gain have all indicated this to be true. I did not expect it to come back in such full force. The hot flashes returned mid April and were more frequent, the night sweats returned by early May, and as a couple of my friends can attest to, my moods have not been the most reasonable. Granted, this is the way women are...but it is an indicator to me that what is taking place in my body is NOT in my best health interest.
When I saw Dr. Tate, my radio-oncologist two weeks ago, he listened as I told him my story of winter illnesses, one right after the other. He did not feel the radiation had contributed to it, said everything had checked out very well, BUT...he understood my reason for quality of life and stopping my Arimidex, but had a concern with the fact that my particular type of cancer feeds on hormones. Arimidex and other aromatase inhibitors reduce the estrogen in your body to nearly zero. By stopping my inhibitor, I just gave them free reign in my body.
Upon leaving that did get me to thinking...maybe I wasn't doing the best thing for me even though I was feeling so much better. I told a few friends and one in particular suggested that I go back on the Arimidex for two months during this summer season and see what the results were. IF I get sick again, then we know it's the medication. IF I don't, I am atleast taking precautions against the cancer.
Today I visited with my oncologist, Dr. Alguire. She had already reviewed Dr. Tate's report and was aware of what I had done. We had a very open discussion and she listened to my reasons with an open mind. Then I asked her to share her concerns and opinion.
First, my chance of reoccurence can be as high as 50%, but since it was small and caught early, that can be about 12%. So I can fall anywhere in that 12-50% chance. BUT...add to that that I have invasive lobular carcinoma that occurs in only 10% of the women who have breast cancer; that my type of cancer is the more frequent one to also invade the other breast; the fact that it spreads in a stealth mode, sending out tentacles rather than form a lump to indicate it is taking over and you can't feel it; and that, unfortunately, my cancer was 100% estrogen driven...it loves the stuff and multiplied happily while enjoying it!
When she said, "I don't mean or want to sound melodramatic here, but you also wanted the truth. There is a possibility it will reoccur and it most likely will be somewhere else in the body. With this form of cancer, it is possible it will be untreatable or even inoperable when discovered. You should just have all the information."
I told her I would like start back on Arimidex when I got home. Yes, I have liked the way I've been feeling for the most part and liked not having chemicals that I can not control in my body. But the thought of cancer cell receptors having a daily diet of 100% estrogen that I can not control feels worse to me right now and with the way my body is responding, it's enthusiastically helping the wrong team!
IF I have problems, we will look at the other medications and other options. IF I don't become ill like winter time, we will look into the potential causes to avoid having the same occur when winter comes again.
On my way home, I remembered my torment with HER2. When Mayo finally clarified that I did NOT need regular chemotherapy treatment because I was not HER2 Positive, I was relieved. BUT...they did not give me a clean slate. Yes, I am in the negative range, but 0 and 1 are negative, 2 is "more aggressive treatment may be considered", 3 is Positive, aggressive treatment required!
When my first specimen was tested, it came out a clear "3". When the specimen from my lumpectomy was tested, it came out a "1". In my mind...only a "0" would keep me from worrying about the potential within my cells. Lobular Carcinoma Insitu and Invasive Lobular Carcinoma are aggressive forms of BC as is HER2...don't like the odds.
SO...I am going back on my Arimidex for two months minimum, likely three. That will take me to my next appointment in September. I can call her IF I have problems, symptoms I don't understand, etc. Will continue my meds that accompany it for hot flashes and add 800-1000 eu's of Vitamin D. The sun will help greatly during this time of year. Thank Goodness!!
She said my immune system appears strong, good count of white blood cells, etc. She also said that all the cancer medications hit people differently because we are all different. She hadn't had anyone express the problems I had had all winter, but that doesn't mean the medication didn't affect my body in some way. She agreed with my friend that trying it again would be in my best interest all the way around.
I know this whole thing is a crap shoot. But the incredible surge of hormones going on is NOT comforting and was certainly unexpected. My adrenal glands are having a field day pumping out food for my cells, potential cancer cells included! Considering my odds of getting this in the first place, I don't think I want to take a chance with a second go around.
Thanks for listening...
My hormone levels have increased and hair growth, emotions, weight gain have all indicated this to be true. I did not expect it to come back in such full force. The hot flashes returned mid April and were more frequent, the night sweats returned by early May, and as a couple of my friends can attest to, my moods have not been the most reasonable. Granted, this is the way women are...but it is an indicator to me that what is taking place in my body is NOT in my best health interest.
When I saw Dr. Tate, my radio-oncologist two weeks ago, he listened as I told him my story of winter illnesses, one right after the other. He did not feel the radiation had contributed to it, said everything had checked out very well, BUT...he understood my reason for quality of life and stopping my Arimidex, but had a concern with the fact that my particular type of cancer feeds on hormones. Arimidex and other aromatase inhibitors reduce the estrogen in your body to nearly zero. By stopping my inhibitor, I just gave them free reign in my body.
Upon leaving that did get me to thinking...maybe I wasn't doing the best thing for me even though I was feeling so much better. I told a few friends and one in particular suggested that I go back on the Arimidex for two months during this summer season and see what the results were. IF I get sick again, then we know it's the medication. IF I don't, I am atleast taking precautions against the cancer.
Today I visited with my oncologist, Dr. Alguire. She had already reviewed Dr. Tate's report and was aware of what I had done. We had a very open discussion and she listened to my reasons with an open mind. Then I asked her to share her concerns and opinion.
First, my chance of reoccurence can be as high as 50%, but since it was small and caught early, that can be about 12%. So I can fall anywhere in that 12-50% chance. BUT...add to that that I have invasive lobular carcinoma that occurs in only 10% of the women who have breast cancer; that my type of cancer is the more frequent one to also invade the other breast; the fact that it spreads in a stealth mode, sending out tentacles rather than form a lump to indicate it is taking over and you can't feel it; and that, unfortunately, my cancer was 100% estrogen driven...it loves the stuff and multiplied happily while enjoying it!
When she said, "I don't mean or want to sound melodramatic here, but you also wanted the truth. There is a possibility it will reoccur and it most likely will be somewhere else in the body. With this form of cancer, it is possible it will be untreatable or even inoperable when discovered. You should just have all the information."
I told her I would like start back on Arimidex when I got home. Yes, I have liked the way I've been feeling for the most part and liked not having chemicals that I can not control in my body. But the thought of cancer cell receptors having a daily diet of 100% estrogen that I can not control feels worse to me right now and with the way my body is responding, it's enthusiastically helping the wrong team!
IF I have problems, we will look at the other medications and other options. IF I don't become ill like winter time, we will look into the potential causes to avoid having the same occur when winter comes again.
On my way home, I remembered my torment with HER2. When Mayo finally clarified that I did NOT need regular chemotherapy treatment because I was not HER2 Positive, I was relieved. BUT...they did not give me a clean slate. Yes, I am in the negative range, but 0 and 1 are negative, 2 is "more aggressive treatment may be considered", 3 is Positive, aggressive treatment required!
When my first specimen was tested, it came out a clear "3". When the specimen from my lumpectomy was tested, it came out a "1". In my mind...only a "0" would keep me from worrying about the potential within my cells. Lobular Carcinoma Insitu and Invasive Lobular Carcinoma are aggressive forms of BC as is HER2...don't like the odds.
SO...I am going back on my Arimidex for two months minimum, likely three. That will take me to my next appointment in September. I can call her IF I have problems, symptoms I don't understand, etc. Will continue my meds that accompany it for hot flashes and add 800-1000 eu's of Vitamin D. The sun will help greatly during this time of year. Thank Goodness!!
She said my immune system appears strong, good count of white blood cells, etc. She also said that all the cancer medications hit people differently because we are all different. She hadn't had anyone express the problems I had had all winter, but that doesn't mean the medication didn't affect my body in some way. She agreed with my friend that trying it again would be in my best interest all the way around.
I know this whole thing is a crap shoot. But the incredible surge of hormones going on is NOT comforting and was certainly unexpected. My adrenal glands are having a field day pumping out food for my cells, potential cancer cells included! Considering my odds of getting this in the first place, I don't think I want to take a chance with a second go around.
Thanks for listening...
Tuesday, March 15, 2011
Today's decision and letter to my "family"
This is not a complaint, or a dissertation...it is a decision.
Sunday night, I got 3 hours sleep. Monday I was up all night. When a friend visited today, I was jabbering away and talking about things I haven't for ages. She was more than gracious and working to stay awake...see how interesting it all was? But it was ridiculous. The reason I mention this is after she left, one would think I could sleep after all I have lacked and after a constant hour of seemingly mindless babble. I slept less than 90 minutes and I am exhausted! The coughing is back, the nose stuffy, the head warm...I lie down and breathing becomes difficult. This is NO LONGER acceptable!
I have spent the last 5 hours doing research, just like I did last May and June. It's a crap shoot, but the overall odds are well in my favor. I am tired of being tired and getting nowhere. A 12% recurrence rate is pretty small, there are no guarantees anyway, and I found MANY research items and other bits of documentation that support my feelings. There is no scientific evidence that stopping a treatment, with or without a physicians support and/or approval, especially as sporatically as I've been doing it lately anyway, will create any problems. In fact, in most cases, women have found marked improvements in both their physical health and well-being and a return to a "new normal" within a month or two...anything would beat the present. Being sick for months is not living.
I haven't taken my Arimidex for two days anyway and I'm not planning to for at least two months. Now you know. It is my decision and I accept full responsibility for the outcome including any consequences. I am going to increase my Vitamin D and Calcium and continue, as I have, to keep the sugar at a minimum which can spike my hot flashes. Those should subside in a few weeks...we'll see. I will also contact my family doctor and go from there.
Aromatase Inhibitors have only been around in this decade...long term effects are not really known as yet. They are considered Chemotherapy drugs and I am chosing to forego them. http://www.chemocare.com/MANAGING/pneumonitis.asp IF cancer comes back, it was out there in my body anyway and would eventually return if that is meant to be. But this existence is just that...an existence. And that is no longer acceptable.
Because you've all been there for me, continue to be and have had more patience than I could ask from anyone, I am sharing this with you and asking for your continued love and support. I have absolutely NO DOUBT that this is the right decision. I ask you to continue and support me in this decision as you have in the past. I will keep my appointments in April and June and we'll see what the tests say.
Things are not right and I have to trust in myself that again, it may not be the most popular decision in the minds of others, possibly even you, but it IS the correct one for me. It is also not a decision made quickly or lightly, I've had the past few months to see how things are...and they are not what I want my life, or what's left of it, to be. Only time will tell...
Thank you, my friends, for "listening" and I hope you will walk with me as I take another path.
Sunday night, I got 3 hours sleep. Monday I was up all night. When a friend visited today, I was jabbering away and talking about things I haven't for ages. She was more than gracious and working to stay awake...see how interesting it all was? But it was ridiculous. The reason I mention this is after she left, one would think I could sleep after all I have lacked and after a constant hour of seemingly mindless babble. I slept less than 90 minutes and I am exhausted! The coughing is back, the nose stuffy, the head warm...I lie down and breathing becomes difficult. This is NO LONGER acceptable!
I have spent the last 5 hours doing research, just like I did last May and June. It's a crap shoot, but the overall odds are well in my favor. I am tired of being tired and getting nowhere. A 12% recurrence rate is pretty small, there are no guarantees anyway, and I found MANY research items and other bits of documentation that support my feelings. There is no scientific evidence that stopping a treatment, with or without a physicians support and/or approval, especially as sporatically as I've been doing it lately anyway, will create any problems. In fact, in most cases, women have found marked improvements in both their physical health and well-being and a return to a "new normal" within a month or two...anything would beat the present. Being sick for months is not living.
I haven't taken my Arimidex for two days anyway and I'm not planning to for at least two months. Now you know. It is my decision and I accept full responsibility for the outcome including any consequences. I am going to increase my Vitamin D and Calcium and continue, as I have, to keep the sugar at a minimum which can spike my hot flashes. Those should subside in a few weeks...we'll see. I will also contact my family doctor and go from there.
Aromatase Inhibitors have only been around in this decade...long term effects are not really known as yet. They are considered Chemotherapy drugs and I am chosing to forego them. http://www.chemocare.com/MANAGING/pneumonitis.asp IF cancer comes back, it was out there in my body anyway and would eventually return if that is meant to be. But this existence is just that...an existence. And that is no longer acceptable.
Because you've all been there for me, continue to be and have had more patience than I could ask from anyone, I am sharing this with you and asking for your continued love and support. I have absolutely NO DOUBT that this is the right decision. I ask you to continue and support me in this decision as you have in the past. I will keep my appointments in April and June and we'll see what the tests say.
Things are not right and I have to trust in myself that again, it may not be the most popular decision in the minds of others, possibly even you, but it IS the correct one for me. It is also not a decision made quickly or lightly, I've had the past few months to see how things are...and they are not what I want my life, or what's left of it, to be. Only time will tell...
Thank you, my friends, for "listening" and I hope you will walk with me as I take another path.
Monday, March 14, 2011
A little background
I started Arimidex in mid October. By mid November, I noted a marked change in my health, basically the return of colds, sore throats, etc that I haven't had as frequent since leaving that old, but loved, musty house on Matthews Drive in Bremerton or River Street here in Whitehall.
I worked on all my activities with support of my wonderful chosen family and friends back here. But after each big event, I was totally exhausted!
Since the second week in December, I have struggled through at least FOUR bouts with some type of cold/flu. It has been difficult to face friends and activities when I have to start with "I'm not feeling real well..." Too frequent for my taste.
I am joyfully involved in the Piano Extravaganza and work with the Chorale once again but began to struggle with the schedule and activities. About 2 weeks ago, I was struck with a very bad headache, stuffy head, fever, and a reoccuring coughing situation that made sleeping almost non-existent. Days with 4 hours or less...tough to get well when your body gets no time to rest.
My "family" has been concerned...I have as well and the coughing spells became so bad, I could not breathe. Last Monday, I went to the Urgent Care in Grand Haven. She diagnosed me with "pneumonitis" and also said I was within days of full blown pneumonia. This is NOT me.
When I got home with my predisone, z-pack, and two inhalers, I read the definition of pneumonitis and also noted that it is sometimes a complication from lung and/or breast cancer. BC rears it's ugly head once again. Inflammation and infection in the lungs; infection that was just built upon with one illness to another...I am STILL struggling with an embarrasing and painful cough that can go for 20 seconds at a time, sometimes longer. It frequently interferes with my sleep...another thing to create havoc with my health.
This is not living well...this is just existing and it is NOT ok.
I worked on all my activities with support of my wonderful chosen family and friends back here. But after each big event, I was totally exhausted!
Since the second week in December, I have struggled through at least FOUR bouts with some type of cold/flu. It has been difficult to face friends and activities when I have to start with "I'm not feeling real well..." Too frequent for my taste.
I am joyfully involved in the Piano Extravaganza and work with the Chorale once again but began to struggle with the schedule and activities. About 2 weeks ago, I was struck with a very bad headache, stuffy head, fever, and a reoccuring coughing situation that made sleeping almost non-existent. Days with 4 hours or less...tough to get well when your body gets no time to rest.
My "family" has been concerned...I have as well and the coughing spells became so bad, I could not breathe. Last Monday, I went to the Urgent Care in Grand Haven. She diagnosed me with "pneumonitis" and also said I was within days of full blown pneumonia. This is NOT me.
When I got home with my predisone, z-pack, and two inhalers, I read the definition of pneumonitis and also noted that it is sometimes a complication from lung and/or breast cancer. BC rears it's ugly head once again. Inflammation and infection in the lungs; infection that was just built upon with one illness to another...I am STILL struggling with an embarrasing and painful cough that can go for 20 seconds at a time, sometimes longer. It frequently interferes with my sleep...another thing to create havoc with my health.
This is not living well...this is just existing and it is NOT ok.
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