June 23, I write in my journal. "I saw Dr. M. yesterday. His behavior was not any different than it was before I just don't think he is on top of his game any more as he boosts that he has 30 years of experience. When I arrived for the appointment 15 minutes early which is protocol for every visit, I asked if I was receiving blood work. "No the receptionist replied no blood work was ordered." After waiting in the waiting room 15 minutes I was ushered back to the second waiting room for 10 more minutes and finally ended up in Dr. M's examination room where I waited one hour. (This has become the norm for his office as he only sees patients 2 days in the week.)
Finally he came in and asked me how I was doing. I immediately told him "I don't know no blood work was ordered." "Well we will get some before you leave."
"So are you going to do Arimidex?" "No in my last visit you gave me the list of drugs and told me to research and we would discuss in this visit. I think Femara might be better."
I went on to say that I have been reading about all of my drug choices and they all have awful side effects, however I think this is the lesser of all the evils of these drugs. Anyway I read with this drug and you are suppose to take calcium with it. I have a concern about my bones." He said "You don't need to take calcium with this. Is osteoporosis in your family?" "No" I replied "Well then you don't need calcium." Not believing that I asked well "How about a bone density test? Do I need that so we can get a baseline?" "How long ago did you have one." "Over 10 years ago." "Ok we will order this test." (He never entered that into my chart so it was not ordered)
I went on to say "I heard there is a blood test which can show if the cancer is present in my system." "Yes but it is only 50% accurate but yes we can do it."
Gary asked him "When could we say that I was cancer free?" He quickly replied "Never with Breast Cancer. I will not even say you are in remission."
This was not true as I asked this same question which was a question recommended by the Amercian Cancer Socitey in my first visit with him (and I still have the notes from that visit) He said that I was in remission since there is was no evidence of the cancer in my system after the surgery and there was no activity in my lymph nodes.
He went on to say "Herceptin for a year is the biggest bang for your buck. (I have had 6 months worth) More than chemo and certainly more than radiation because with radiation we don't know who it will work on and who it won't." "Well than why did I do chemo? Because the Herceptin works better with it." I thought "Well how much better? Then again it didn't matter because that was done. Opps just a small point he left out.
I really wanted to get to the bottom line of us working together. "Dr. M I am not sure you and I are a good fit. Your style is very paternalistic. My father treated me the same way. "My way or the highway with little discussion about anything. He did not care how I felt." "Well I suppose you are right, I am the doctor and have been doing this for 30 years. I know what my patients need." "Yes you may but you don't know who Luann is." He didn't say anything. I left his office discouraged and defeated.
Even after this discouraging conversation with the doctor I was afraid to finally say this was enough. As in any relationship it is a two way street. There has to be communicating and understanding. There use to be a post in Good Housekeeping I think called "Can this Marriage be Saved?" Really if you think about it the relationship with the doctor is based on trust and respect. I don't have that anymore.
Now I am asking myself what did I do to contribute to this? In hind site, out of anger and fear of this cancer my back up style turned into an attack mode. The more research I gathered, the more I challenged the status quo. I could not count on him to be up to date on everything that was going on with my type of breast cancer. Maybe it was the way I approached him with my know it all attitude? Possibly. I did write down questions every time. It seemed that the more questions I asked the more defensive he got.
Still there is an emptiness in me. Even though the relationship was adversary it was the "normal" that I knew. Now I have to start all over with a new oncologist. I don't want to make the same mistakes so I am asking you how would you begin again with my new oncologist on July 12th?
A bit discouraged but still Running the Race. Luann
Sunday, June 27, 2010
Sunday, June 20, 2010
Lions and Tigers and Bears OH MY!
Growing up, Thanksgiving Day in our house was full of excitement, chaos, fun, laughter, loud conversations, as we crammed 7 kids, a mom and dad, cousins, grand parents into a house that might have been 1800 SQ feet including the basement in Livonia, Michigan. One time I even remember the turkey catching on fire as we had to wait for the Lions Football Game to finish before we could gather together to give thanks around the meal that my mom prepared. But the best part of the evening was when everyone gathered around our Magnavox TV with a screen that I think was about 23inches to watch The Wizard of Oz.
In her dreams Dorothy finds herself in the beautiful Land of OZ after she gets hit on her head and knocked unconscious with a window during a violent tornado in Kansas. She meets some friends along the way who partner with her to help her get to the Emerald City where a great and powerful Wizard has the answer to get her back home to her beloved Kansas. The Lion, Scare Crow, Tin Man and Dorthy encounter all kinds of obstacles that almost paralyze them into thinking they will not make it to the city as they walk through the dark cold forest. They are sure they are going to encounter "Lions and Tigers and Bears but they keep pushing forward as they know they must reach their goal to meet this mysterious wizard.
Like Dorothy, 10 months ago I got hit on the head with a window - well it was more like a brick as my tornado hit and knocked me out. It almost seems like a dream. "You have breast cancer." Where is the Emerald City for me? The place where I will be safe. I want to go back home to my "normal world." Oh the "Lions and Tigers and Bears" that I keep encountering have stopped me in my feet once again. That yellow brick road to the emerald city is so long! Chemo, my hair falling out, trying to figure out what to eat because nothing tasted right, fatigue, loneliness, radiation.
I am trying to get back home Mr. Wizard. I want to feel normal again. I want to have my brain and energy back. Tuesday I will encounter another choice. Which Aromataise Inhibitor do I need? Is it Femara, Arimidex or Aromasin? The possible side effects? Hot flashes, night sweats, weight gain, fatigue, depression, bone pain..the Lions, Tigers and Bears of "what if's" are plaguing me right now.
I know I will get that Emerald City someday. However, like Dorothy when she returned to her home, she had been changed inside so she was not the same Dorothy that left Kansas. She was appreciative of the things in life she once took for granted. Dorothy was in life, not just a by stander.
That is how I feel! I think sometimes we all encounter tornadoes in our life that turn our world around and upside down. We must keep pressing to get to that Emerald City. Things may not be the same as they were before we left home, perhaps they can be better.
"The Lord is my light and my salvation I shall fear no one!"
Running the Race with hope! Luann
Saturday, June 5, 2010
Graduation Day and Commencement Ceremony
I can remember my College Graduation Day like it was yesterday. The year was May of 1992. I am now 55 years old so if you do the math, you know I was no spring chicken when I graduated. You see, I was not your traditional student as I was almost 40 years old when I received my diploma. College actually took me 9 years to complete because I took one course at a time going to night school which was grueling. On top of that I worked full time and tried to be the best mom, wife, daughter, sister and friend I could be. At times I fell short but those are topics for another time. We lived over seas in Mannheim, Germany where I attended the University of Maryland - European division.
The rigorous course work was grueling at times as I tried to push through Accounting, Economics and a plethora of Business courses. The goal of the University was to do everything they could to prepare me, make me strong and make sure I was well rounded to to succeed in life. I must admit that there were many times I was ready to give up but my family and friends kept pushing me to keep going! Reaching into the depth of my soul with all of the strength that I had indeed I kept going.
We got the news that we were being transferred to Iwakuni Japan and I did not complete the paper work on time to be able to walk in the Commencement Ceremony in Germany. I was so disappointed that I paid my dues and was not able to celebrate with my fellow classmates on European soil. I was told I could participate on US soil but not with my classmates. I thought "I don't want to walk with people I don't even know and sank to the realization that my dream to celebrate would be unfilled.
That was not the case! My family and friends saw to it that I would graduate and have the party they thought I deserved so they created a ceremony and party for me. I wore the cap and gown of one of my friends children who was graduating High School as the colors were the same. I had a cake, presents and felt so very proud that I had finally after 9 years completed this lofty goal. Not in the traditional sense by any means but after all I am not what you would call a traditional individual.
You might ask what does graduation have to do with my recent cancer journey? There are actually alot of similarities. Instead of rigorous course work I had rigorous treatments of Chemo and Radiation.
Instead of professors, I had doctors. As a student I challenged the status quo quite often as I did not always accept what I was told. I was the annoying student who always sat in the front seat and attentively listened to what was being presented and was always raising my hand to ask why. I took copious notes. When something did not make sense, I would challenge the status quo asking why or why not and then conduct my own research to see which path I would accept. Sometimes I got an answer that made sense to me and accepted the professors reasoning, other times I did not.
As a patient I am sure I am perceived as annoying. I felt it was my job to take copious notes, always going to "class" with the doctor prepared and with questions I needed answers too. After all Doctors are human too. And yes I challenged the status quo as I began to be a student of learning the course work of cancer.
I think in this vast field of medicine and cancer things are constantly changing and we must be students of learning in this area. The goal of the doctor was to prepare my body to fight this awful invasion of cancer to my body and conquor this disease. However, the method of how we reached this goal did not go without questions.
"Why 6 sessions of chemo, why not 5,4 or 3? Why do I have to take pre-meds with chemo? Why do I have to do 6 weeks of radiation? Why not an accelerated course of 4 or 3 weeks?" Now that was a good question because we were able to cut the 6 weeks to 4 by accelerating the process which brings me to yesterday. Just like getting my degree many times I felt like quiting. My body screamed "Please not another invasion, not another drug! But my family and friends keep pushing me to keep going saying it will be worth it! You must finish!
Yesterday, as I laid on the cold, hard radiation table for the last time I repeated in my mind the same prayer I had through out radiation and chemo course.
"Lord protect what needs to be protected and destroy what needs to be destroyed"
As this was uttered one more time something was different occurred. The invisible beam came on and penetrated my body one more time I could hear the weak but strong buzz of the ray. Then silence. It was finished. I felt God touch my heart to gently say...
"Luann this is done."
The lights came on in the room and I felt an incredible peace that now I could move on. Indeed I had graduated. This part of the journey was done. Moving onto "Graduate School" the course work will be maintenance drugs, follow ups and learning to be in life again. Not sure how this will totally play out, but I ask you who of us really knows that for sure?
"I am done with radiation!" The commencement ceremony was simple. I changed my radiation gown for my street clothes and retired this gown to the trash can!
Talk about celebration! Here is the celebration box that my blogging sister Kim sent me to celebrate the passing of the course work and Graduating! You can follow Kim at Http://kim-living4today.blogspot.com. (Sorry I have still not learned how to insert a link) A huge thank you for this surprise Kim! This was such a great idea!
One thing for sure..I will never be the same again!
Running the Race as a Graduate today. Luann
The rigorous course work was grueling at times as I tried to push through Accounting, Economics and a plethora of Business courses. The goal of the University was to do everything they could to prepare me, make me strong and make sure I was well rounded to to succeed in life. I must admit that there were many times I was ready to give up but my family and friends kept pushing me to keep going! Reaching into the depth of my soul with all of the strength that I had indeed I kept going.
We got the news that we were being transferred to Iwakuni Japan and I did not complete the paper work on time to be able to walk in the Commencement Ceremony in Germany. I was so disappointed that I paid my dues and was not able to celebrate with my fellow classmates on European soil. I was told I could participate on US soil but not with my classmates. I thought "I don't want to walk with people I don't even know and sank to the realization that my dream to celebrate would be unfilled.
That was not the case! My family and friends saw to it that I would graduate and have the party they thought I deserved so they created a ceremony and party for me. I wore the cap and gown of one of my friends children who was graduating High School as the colors were the same. I had a cake, presents and felt so very proud that I had finally after 9 years completed this lofty goal. Not in the traditional sense by any means but after all I am not what you would call a traditional individual.
You might ask what does graduation have to do with my recent cancer journey? There are actually alot of similarities. Instead of rigorous course work I had rigorous treatments of Chemo and Radiation.
Instead of professors, I had doctors. As a student I challenged the status quo quite often as I did not always accept what I was told. I was the annoying student who always sat in the front seat and attentively listened to what was being presented and was always raising my hand to ask why. I took copious notes. When something did not make sense, I would challenge the status quo asking why or why not and then conduct my own research to see which path I would accept. Sometimes I got an answer that made sense to me and accepted the professors reasoning, other times I did not.
As a patient I am sure I am perceived as annoying. I felt it was my job to take copious notes, always going to "class" with the doctor prepared and with questions I needed answers too. After all Doctors are human too. And yes I challenged the status quo as I began to be a student of learning the course work of cancer.
I think in this vast field of medicine and cancer things are constantly changing and we must be students of learning in this area. The goal of the doctor was to prepare my body to fight this awful invasion of cancer to my body and conquor this disease. However, the method of how we reached this goal did not go without questions.
"Why 6 sessions of chemo, why not 5,4 or 3? Why do I have to take pre-meds with chemo? Why do I have to do 6 weeks of radiation? Why not an accelerated course of 4 or 3 weeks?" Now that was a good question because we were able to cut the 6 weeks to 4 by accelerating the process which brings me to yesterday. Just like getting my degree many times I felt like quiting. My body screamed "Please not another invasion, not another drug! But my family and friends keep pushing me to keep going saying it will be worth it! You must finish!
Yesterday, as I laid on the cold, hard radiation table for the last time I repeated in my mind the same prayer I had through out radiation and chemo course.
"Lord protect what needs to be protected and destroy what needs to be destroyed"
As this was uttered one more time something was different occurred. The invisible beam came on and penetrated my body one more time I could hear the weak but strong buzz of the ray. Then silence. It was finished. I felt God touch my heart to gently say...
"Luann this is done."
The lights came on in the room and I felt an incredible peace that now I could move on. Indeed I had graduated. This part of the journey was done. Moving onto "Graduate School" the course work will be maintenance drugs, follow ups and learning to be in life again. Not sure how this will totally play out, but I ask you who of us really knows that for sure?
"I am done with radiation!" The commencement ceremony was simple. I changed my radiation gown for my street clothes and retired this gown to the trash can!
Talk about celebration! Here is the celebration box that my blogging sister Kim sent me to celebrate the passing of the course work and Graduating! You can follow Kim at Http://kim-living4today.blogspot.com. (Sorry I have still not learned how to insert a link) A huge thank you for this surprise Kim! This was such a great idea!
One thing for sure..I will never be the same again!
Running the Race as a Graduate today. Luann
Tuesday, June 1, 2010
Going on a God Hunt!
When I was younger, I loved to sing. I can remember at the age of 4 standing at the front door window looking at myself singing my heart out to the whole neighborhood. Music has a way of making my soul happy.
The song "This is the Day" tells us this is the day that the Lord has made, I will rejoice and be glad in it. The song indicates I have a choice to be happy and look for the little things that God is doing. Hence the title "God Hunt!"
Today is the only day we have if you think about it because tomorrow is promised to no one. This is true whether you have cancer or not. So I am reminded to do something with it today!
You see I have been quite fatigued and find myself having difficulty focusing which I guess is why I have been an absent blog writer for the last few weeks.
God Hunt #1
I can write! So for this 5:00 AM moment I feel like I have a brain so I will write. I am amazed by the mercies I have been afforded over the past weeks!
God Hunt #2
Radiation...I had a total of 20 to begin with. Then I learned that I only had 16. This week I will end radiation on Friday and do the happy dance! The reason for the 16 was to finish the initial treatment. The doctor was not sure I would make it through the 16 without being burned so did not schedule it. Upon examination she was amazed at the fact there was only a slight hint of pink on my breast. I think that has to do with A..prayer of protection, B..Radiation oil from the acupuncture doc for burning and C...Aloe Vera every day from the plant!
God Hunt #2
Relay for Life was amazing! Our plant raised over $2400 which was quite a bit over the original goal of $500! My soul was renewed as I decided to do the survivor walk with a precious lady in our plant who has Lung Cancer. As we walked around the circle of Mars Hill College the reminders of those who have gone on before us indicated by all of the white bags with candles in them was a reminder that life is precious and cancer is an ugly disease that needs to go away!
The End of The Race.. Marshall "Bags" Cancer!
God Hunt #4 - My daughter and her family came up to visit this weekend. The reality of cancer for me has been a year of not really seeing them mostly due to the treatment = low white counts, low red counts, and no energy.
Here is Taylor, Hope and Kennedy. We had a great time this weekend going to Fun Depot but before we played we needed to get the garden in the ground.
As I write this I am thankful for all the blessings I've been afforded! Wishing you a great week! Try going on a God Hunt this week and look for the unexpected things! Little things that show us God is alive and still interested in us!
Running the Race thankful that I have today! Luann
The song "This is the Day" tells us this is the day that the Lord has made, I will rejoice and be glad in it. The song indicates I have a choice to be happy and look for the little things that God is doing. Hence the title "God Hunt!"
Today is the only day we have if you think about it because tomorrow is promised to no one. This is true whether you have cancer or not. So I am reminded to do something with it today!
You see I have been quite fatigued and find myself having difficulty focusing which I guess is why I have been an absent blog writer for the last few weeks.
God Hunt #1
I can write! So for this 5:00 AM moment I feel like I have a brain so I will write. I am amazed by the mercies I have been afforded over the past weeks!
God Hunt #2
Radiation...I had a total of 20 to begin with. Then I learned that I only had 16. This week I will end radiation on Friday and do the happy dance! The reason for the 16 was to finish the initial treatment. The doctor was not sure I would make it through the 16 without being burned so did not schedule it. Upon examination she was amazed at the fact there was only a slight hint of pink on my breast. I think that has to do with A..prayer of protection, B..Radiation oil from the acupuncture doc for burning and C...Aloe Vera every day from the plant!
God Hunt #2
Relay for Life was amazing! Our plant raised over $2400 which was quite a bit over the original goal of $500! My soul was renewed as I decided to do the survivor walk with a precious lady in our plant who has Lung Cancer. As we walked around the circle of Mars Hill College the reminders of those who have gone on before us indicated by all of the white bags with candles in them was a reminder that life is precious and cancer is an ugly disease that needs to go away!
The End of The Race.. Marshall "Bags" Cancer!
God Hunt #4 - My daughter and her family came up to visit this weekend. The reality of cancer for me has been a year of not really seeing them mostly due to the treatment = low white counts, low red counts, and no energy.
Here is Taylor, Hope and Kennedy. We had a great time this weekend going to Fun Depot but before we played we needed to get the garden in the ground.
As I write this I am thankful for all the blessings I've been afforded! Wishing you a great week! Try going on a God Hunt this week and look for the unexpected things! Little things that show us God is alive and still interested in us!
Running the Race thankful that I have today! Luann
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