Yesterday saw lung medical oncology NP and the breast medical oncologist. My lung CT will be rescheduled so that I will have been on the Tarceva a full 8 weeks before the scan. That will give the best chance to show if it's working.Now it's scheduled for 9/20/10.
In the meantime, Dr S wants me to start tamoxifen now. I just took the first one. He's hoping it will control the breast cancer and surgery may not be necessary. I'm getting a baseline breast ultrasound Monday...will follow up in a few months.
See, in order to do any surgery, I'd have to go off the Tarceva for a week or so at least. It would greatly interfere with healing. The lung cancer is by far and away more life threatening....so no going off the Tarceva -- unless we find out it's not working..
If it's not working, I'll have to have some very tough chemo. Everyone is really focused on the lung cancer. Every friend who knows my diagnosis thinks I'll be around a long time and will kick it.
I choose to believe that. The Tarceva patient information provideed by by the manufacturer states in large letters that patients on Tarceva live 12 months instead of 11 months. Oh goody!! I'm going for 24, 36, 60 months. None of this 12 months crap. (Excuse me!)
So, I'll see how the tamoxifen hits me....more hot flashes, mood swings. OK. Maybe not!!!It's down the hatch!!
Wednesday, August 25, 2010
Saturday, August 21, 2010
Insomnia
Side effect centrral here tonight. Can't sleep. Can't get comfortable. Even the dogs are sound asleep: Duke's occasional snore, David's deep quiet breathing, Boo laying tinkie-up, totally out. Jack is curled up in a little ball. They did not stir when I got out of bed and left the bedroom.
There must be hundreds of other people out there tonight who are in the same position I'm in: awake and wondering if the medication is working. At least the cough has calmed down since I took some meds; it was getting fierce and I was getting worried.
I pray for the people who aren't blessed with the wonderful support that I am: my husband, my family, friends, co-workers...is there someone out there tonight who feels really alone and is facing cancer with little or no support? David and I are having every need met, and more. Makes my little bout of insomnia seem rather insignificant.
I'm finally feeling a bit sleepy~~so with a thankful heart for all I do have, I'll take my one-lunged self back to bed...
There must be hundreds of other people out there tonight who are in the same position I'm in: awake and wondering if the medication is working. At least the cough has calmed down since I took some meds; it was getting fierce and I was getting worried.
I pray for the people who aren't blessed with the wonderful support that I am: my husband, my family, friends, co-workers...is there someone out there tonight who feels really alone and is facing cancer with little or no support? David and I are having every need met, and more. Makes my little bout of insomnia seem rather insignificant.
I'm finally feeling a bit sleepy~~so with a thankful heart for all I do have, I'll take my one-lunged self back to bed...
Tuesday, August 17, 2010
A quiet afternoon of introspection
Finally a nice, not so humid day to sit outside with Jack, Duke and Boo. It's been a triple crown of side effects from the Tarceva today, so I'm not feeling so great. That being said, I have felt much worse...and am able to enjoy the yard, the wildlife and the antics of my boys as they also enjoy the wildlife!
I've had a few days where, relatively speaking, I felt almost "normal"...psychologically anyway. I've made a clear and deliberate decision to LIVE WITH cancer, and not let cancer pull me down. I can almost forget about being a "cancer patient" who has metastatic disease. The days when the side effects are bad and I'm feeling so very fatigued remind me. That's ok. It's still about living within the strength and capabilities I DO have.
I guess when we're confronted with our mortality, we become more introspective and look at how we've lived to now. I remember the horrific crap (excuse me) that went on when my mother died, and then when my father died....all about estates, land and money.
I'm as guilty of greed as the next one. But no amount of money and no amount of property could change my diagnosis or extend my life by one moment.
I'd like to believe that over the last years my attitutde has changed substantially. I spent my inheritance to get my master's and support me and my (now-deceased) ex until the time was right to send him back to Germany. I have interest in some farm land, but that's all that's left of the pile of money/inheritance that caused so much angst and anger in my family. What was left I've happily given to our church, given away to people or situations that are in a far tougher spot than I am.
It comes, it goes. That money was never mine to begin with. My great-grandparents and grandparents had scrimped and saved for years. My great grandmother and my grandmother would tie shoelaces together when one broke instead of getting a new one. Shoes were repaired, resoled, polished and worn.
I admit there was a time when I was flippant and arrogant about that money....money that was never mine to begin with. I did nothing to earn it, yet I felt entitled to it. I am so ashamed of this.
In going back to school to become a nurse practitioner, I hope I've done something positive with it. I hope that I have helped some patients cope better with their illness, offered some comfort to those in need, and educated patients and staff to the best of my ability when needed about liver disease. The Lord placed a calling on my heart to go into hepatology. I sincerely wish that my condition will allow me to return to this sometime soon.
It wasn't money that held my hand after surgery when the pain was so bad I just wanted to die. It's not money that sends me notes of encouragement and little gifts just for fun. It isn't money that plots a creative scheme to surprise me with all sorts of fun and wonderful things. It isn't money that comes to the house and sits and visits with me on Fridday afternoons... who explores the implications of a life-changing and life-threatening chronic illness. It was my husband, my co-workers,my family, my friends here in Ohio and those scattered all over the country. It'a about RELATIONSHIPS.
Money - necessary to live. Unfortunately, the cause of much bad feeling between people for myriad reasons. I want no money issues in relationships because it always causes problems, real or imagined, in someone's mind. The dollar signs hang there in the air and foul relationships in which one person feels slighted, or in a position of "less power".
What brings me joy? Worshiping the Lord in Spirit and Truth. Holding my husband's hand, listening to my stepson play his guitar, watching the silly antics of my dogs, marveling at the wonder of Creation: the complexity and sheer beauty of it all. Esspresso Chip frozen custard from Whit's. Hanging out with David's Mom and Dad. My many friends, near and far, old and new. Family. Giving secret, anonymous gifts. The sounds in my backyard: three sets of windchime, birdsongs, cicadas, distant traffic sounds. A cold nose bumping my arm off the keyboard---"Pet me, Mom!". Seeing my 37 year-old nephew and his wife for the first time in 5 years. (He's Navy, submariner, formerly posted out in WA).
I've been thinking about the good times with my family of origin. The independence that my mother taught me and modeled in spite of her alcoholism. The love of and respect for nature gained during many camping trips, hikes, etc. Both mom and dad nurtured my love for music. Mom got me interested in medicine. She was a surgical nurse in the early 1940s. When my first dog Yauni (Norwegian Elkhound) was spayed, mom brought home her uterus and we dissected it together. It was fascinating and something I'll never forget. How many moms do you know who would do that with their kid? And this was in about 1970.
My dad and I shared a similar physical reaction to beautiful opera music: goosebumps. From my dad I gained a love of the mechanical, especially engines and fast cars. I remember the two of us wrenching on my 1973 Mazda RX-3 with the Wankel rotary engine in it. From a very young age, Daddy taught me about astronomy. I'd sit on his lap and we'd go through the big "Golden Book of Astronomy". When I was a bit older--probably around 6 or 7, he bought a pretty decent telescope. We spent hours looking at the moon, Mars, Jupiter and it's moons ( we could only see 4), Saturn and its rings....nebulae...you name it. He even got a sun filter so we could see the sun. I've seen solar and lunar eclipses. In short---when Daddy shared his sense of wonder with me, I caught it and kept it. I think of him every time I look into the night sky.
My sister had the dubious honor of "raising" me~~Mom waited until she was almost nine years old before having me. Built in babysitter. And what wonderful gifts my sister gave me! I learned to read at an extremely early age. Entering first grade I had read ALL of the Laura Ingall's Wilder Little House books. That gave me an extraordinary advantage in school. She was my first piano teacher. We played several duets: O Solo Mio, and others I can no longer name.
Candy Land was my favorite game. I really believed that it existed. My sister created a Candy Land for me in a large walk in closet in our Cincinnati home. She carried me piggyback, told me to keep my eyes closed....and voila! It was remarkable.
There's a board game of sorts called "Puff Pool" that involves using your syringe - squiting air to protect a small cup in from of your syringe from getting in the cup. I had serious bladder control issues...age 5 or 6 playing this as home.
When we moved to Worthington, OH, our housing development was still under construction. We'd walk down to the banks of the Olentangy river, and sit on a large branch that hung way out over the water. We'd do Mad Libs--and laugh until we cried....or until I wet my pants, which was the usual scenario.
We swam together, canoed together, camped and hiked together. I remember one particular Christmas Eve night when we were living in Cincinnati. I must have been 4 or 5 years old. That night I slept upstairs in with Marti in her room. Lights out---several minutes passed, then --- a clicking sound like hooves....surely the sound was the reindeer on the roof!! (Marti had been tapping her fingers on the headboard!) She was hard put to it to keep me in the bedroom!
My sister was my advocate and protector before I knew I needed one, before I understood my mother's alcoholism. She taught me to dance in my bedroom one night to "Jumpin' Jack Flash". She taught me the dance "The Riot"-- to Creedence's "Heard It Through The Grapevine". Many, many years later she came to the house when I called her: my ex had used brackets and screw to secure the door to his basement room closed...and was drunk. I had to call the cops and the fire department....they had to tear the door down. She was also there when I graduated with my master's degree and won the OSU College of Nursing's award for Outstanding Nurse Practitioner Student and the Dean's Leadership award.
What a different person I would be if Marti had not been in my life?
Unimaginable. Our best times had nothing to do with money. Our worst times: yes. Money had nothing to do with those experiences --- and love had EVERYTHING to do with them--Marti, Mom and Dad.
Being diagnosed with a life-limiting illness has caused me to take a hard look at where I expend my energy and what is really important. I want my legacy to be found in the hearts of my family, my students, my friends and my patients. Love is the only thing that lasts.
I've had a few days where, relatively speaking, I felt almost "normal"...psychologically anyway. I've made a clear and deliberate decision to LIVE WITH cancer, and not let cancer pull me down. I can almost forget about being a "cancer patient" who has metastatic disease. The days when the side effects are bad and I'm feeling so very fatigued remind me. That's ok. It's still about living within the strength and capabilities I DO have.
I guess when we're confronted with our mortality, we become more introspective and look at how we've lived to now. I remember the horrific crap (excuse me) that went on when my mother died, and then when my father died....all about estates, land and money.
I'm as guilty of greed as the next one. But no amount of money and no amount of property could change my diagnosis or extend my life by one moment.
I'd like to believe that over the last years my attitutde has changed substantially. I spent my inheritance to get my master's and support me and my (now-deceased) ex until the time was right to send him back to Germany. I have interest in some farm land, but that's all that's left of the pile of money/inheritance that caused so much angst and anger in my family. What was left I've happily given to our church, given away to people or situations that are in a far tougher spot than I am.
It comes, it goes. That money was never mine to begin with. My great-grandparents and grandparents had scrimped and saved for years. My great grandmother and my grandmother would tie shoelaces together when one broke instead of getting a new one. Shoes were repaired, resoled, polished and worn.
I admit there was a time when I was flippant and arrogant about that money....money that was never mine to begin with. I did nothing to earn it, yet I felt entitled to it. I am so ashamed of this.
In going back to school to become a nurse practitioner, I hope I've done something positive with it. I hope that I have helped some patients cope better with their illness, offered some comfort to those in need, and educated patients and staff to the best of my ability when needed about liver disease. The Lord placed a calling on my heart to go into hepatology. I sincerely wish that my condition will allow me to return to this sometime soon.
It wasn't money that held my hand after surgery when the pain was so bad I just wanted to die. It's not money that sends me notes of encouragement and little gifts just for fun. It isn't money that plots a creative scheme to surprise me with all sorts of fun and wonderful things. It isn't money that comes to the house and sits and visits with me on Fridday afternoons... who explores the implications of a life-changing and life-threatening chronic illness. It was my husband, my co-workers,my family, my friends here in Ohio and those scattered all over the country. It'a about RELATIONSHIPS.
Money - necessary to live. Unfortunately, the cause of much bad feeling between people for myriad reasons. I want no money issues in relationships because it always causes problems, real or imagined, in someone's mind. The dollar signs hang there in the air and foul relationships in which one person feels slighted, or in a position of "less power".
What brings me joy? Worshiping the Lord in Spirit and Truth. Holding my husband's hand, listening to my stepson play his guitar, watching the silly antics of my dogs, marveling at the wonder of Creation: the complexity and sheer beauty of it all. Esspresso Chip frozen custard from Whit's. Hanging out with David's Mom and Dad. My many friends, near and far, old and new. Family. Giving secret, anonymous gifts. The sounds in my backyard: three sets of windchime, birdsongs, cicadas, distant traffic sounds. A cold nose bumping my arm off the keyboard---"Pet me, Mom!". Seeing my 37 year-old nephew and his wife for the first time in 5 years. (He's Navy, submariner, formerly posted out in WA).
I've been thinking about the good times with my family of origin. The independence that my mother taught me and modeled in spite of her alcoholism. The love of and respect for nature gained during many camping trips, hikes, etc. Both mom and dad nurtured my love for music. Mom got me interested in medicine. She was a surgical nurse in the early 1940s. When my first dog Yauni (Norwegian Elkhound) was spayed, mom brought home her uterus and we dissected it together. It was fascinating and something I'll never forget. How many moms do you know who would do that with their kid? And this was in about 1970.
My dad and I shared a similar physical reaction to beautiful opera music: goosebumps. From my dad I gained a love of the mechanical, especially engines and fast cars. I remember the two of us wrenching on my 1973 Mazda RX-3 with the Wankel rotary engine in it. From a very young age, Daddy taught me about astronomy. I'd sit on his lap and we'd go through the big "Golden Book of Astronomy". When I was a bit older--probably around 6 or 7, he bought a pretty decent telescope. We spent hours looking at the moon, Mars, Jupiter and it's moons ( we could only see 4), Saturn and its rings....nebulae...you name it. He even got a sun filter so we could see the sun. I've seen solar and lunar eclipses. In short---when Daddy shared his sense of wonder with me, I caught it and kept it. I think of him every time I look into the night sky.
My sister had the dubious honor of "raising" me~~Mom waited until she was almost nine years old before having me. Built in babysitter. And what wonderful gifts my sister gave me! I learned to read at an extremely early age. Entering first grade I had read ALL of the Laura Ingall's Wilder Little House books. That gave me an extraordinary advantage in school. She was my first piano teacher. We played several duets: O Solo Mio, and others I can no longer name.
Candy Land was my favorite game. I really believed that it existed. My sister created a Candy Land for me in a large walk in closet in our Cincinnati home. She carried me piggyback, told me to keep my eyes closed....and voila! It was remarkable.
There's a board game of sorts called "Puff Pool" that involves using your syringe - squiting air to protect a small cup in from of your syringe from getting in the cup. I had serious bladder control issues...age 5 or 6 playing this as home.
When we moved to Worthington, OH, our housing development was still under construction. We'd walk down to the banks of the Olentangy river, and sit on a large branch that hung way out over the water. We'd do Mad Libs--and laugh until we cried....or until I wet my pants, which was the usual scenario.
We swam together, canoed together, camped and hiked together. I remember one particular Christmas Eve night when we were living in Cincinnati. I must have been 4 or 5 years old. That night I slept upstairs in with Marti in her room. Lights out---several minutes passed, then --- a clicking sound like hooves....surely the sound was the reindeer on the roof!! (Marti had been tapping her fingers on the headboard!) She was hard put to it to keep me in the bedroom!
My sister was my advocate and protector before I knew I needed one, before I understood my mother's alcoholism. She taught me to dance in my bedroom one night to "Jumpin' Jack Flash". She taught me the dance "The Riot"-- to Creedence's "Heard It Through The Grapevine". Many, many years later she came to the house when I called her: my ex had used brackets and screw to secure the door to his basement room closed...and was drunk. I had to call the cops and the fire department....they had to tear the door down. She was also there when I graduated with my master's degree and won the OSU College of Nursing's award for Outstanding Nurse Practitioner Student and the Dean's Leadership award.
What a different person I would be if Marti had not been in my life?
Unimaginable. Our best times had nothing to do with money. Our worst times: yes. Money had nothing to do with those experiences --- and love had EVERYTHING to do with them--Marti, Mom and Dad.
Being diagnosed with a life-limiting illness has caused me to take a hard look at where I expend my energy and what is really important. I want my legacy to be found in the hearts of my family, my students, my friends and my patients. Love is the only thing that lasts.
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