Testing and more testing today. Pulmonary function tests and other tests that I can't even name. At one point, I was standing in nuclear medicene wondering if I was going to set off the alarms at an airport. "Quick, down on the ground. You are carrying a nuclear bomb in your lungs."
For what seemed like hours, oh wait it was hours, I breathed in and out. Over and Over. Into all types of tubes. While people measured my input, output, capacity, strength - even how much where and when.
I pray that I passed the standards to be cleared for surgery. Then we met with the mediport guy who went over the procedure to place a port for chemotherapy. Like I said -- we are proceeding as if either one could happen.
I don't know when I will get the results. I hope sooner rathe than later. I will but the docs like there is no tomorrow. The receptionists will learn to hate me. "Oh, she's on line one again."
I don't care. I only want to move on. For at least another 30 years.
Wednesday, April 30, 2008
Tuesday, April 29, 2008
Yes, No and Maybe
It is only 9:30 pm and yes, I writing in my blog. It must be around midnight somewhere.
As of yesterday afternoon, we were ready to sign up for chemo. The questions we asked were -- Is there time for chemo? and Will it change the surgical outcome? The answer we received is yes and no. So we went to bed thinking that chemo would start by the end of the week.
Then the cute doc from NY called and we discussed my film. He completely reinforced the docs opinion in Cleveland and said he would send his mother there. I felt much better. He was concerned with chemo first and the potential for a piece to breakaway -- causing greater damage even death.
We called the Cleveland surgeon again. He reinforced the surgery alternative stating that he was working fast so that we could save the middle lobe of the right lung. The upper lobe is already gone. He wasn't sure that chemo would work. He felt this was the best alternative.
Do you see a pattern? The surgeons say cut and the oncs say chemo. Hence, the up and down of the past 24 hours.
Finally we spoke with the Cleveland onc. He says cut. He stated that it was the most aggressive option giving me the greater chance at ten more years. Or longer. Yes, it will be hell for the next year or two while I go through surgery (major heart and lung), chemo and recover. This isn't your mother's chemo - it is your grandmothers nasty, hair loss, vomiting, bleeding chemo. Shit.
So as of tonight - 9:35 pm - we are going forward as if each were going to happen. We are going for a pulmonary function test to see if I even qualify the surgery. Then we are going to talk to a surgeon about placing a mediport for the chemo.
All in all I am spinning around dizzily. Exhausted and walking like a zombie. I am desperately trying to find an upside here. A small spark of humor. A twinkle in the crapper.
Try this . . .
We now know there isn't ice water in my veins and heart like some former employees thought. It is only crap.
As of yesterday afternoon, we were ready to sign up for chemo. The questions we asked were -- Is there time for chemo? and Will it change the surgical outcome? The answer we received is yes and no. So we went to bed thinking that chemo would start by the end of the week.
Then the cute doc from NY called and we discussed my film. He completely reinforced the docs opinion in Cleveland and said he would send his mother there. I felt much better. He was concerned with chemo first and the potential for a piece to breakaway -- causing greater damage even death.
We called the Cleveland surgeon again. He reinforced the surgery alternative stating that he was working fast so that we could save the middle lobe of the right lung. The upper lobe is already gone. He wasn't sure that chemo would work. He felt this was the best alternative.
Do you see a pattern? The surgeons say cut and the oncs say chemo. Hence, the up and down of the past 24 hours.
Finally we spoke with the Cleveland onc. He says cut. He stated that it was the most aggressive option giving me the greater chance at ten more years. Or longer. Yes, it will be hell for the next year or two while I go through surgery (major heart and lung), chemo and recover. This isn't your mother's chemo - it is your grandmothers nasty, hair loss, vomiting, bleeding chemo. Shit.
So as of tonight - 9:35 pm - we are going forward as if each were going to happen. We are going for a pulmonary function test to see if I even qualify the surgery. Then we are going to talk to a surgeon about placing a mediport for the chemo.
All in all I am spinning around dizzily. Exhausted and walking like a zombie. I am desperately trying to find an upside here. A small spark of humor. A twinkle in the crapper.
Try this . . .
We now know there isn't ice water in my veins and heart like some former employees thought. It is only crap.
Sunday, April 27, 2008
Midnight Questions
It is 12:02 am and I can't sleep. What a surprise I say sarcastically?
I hope to hear tomorrow from the NY docs. I am praying that they say there is time for chemotherapy. Or that they have other options for me. I am scared that removal of another lobe of lung and part of my heart will decrease my capacity that question becomes "What kind of life?"
That is the question that has always haunted me since my diagnosis. At what point do I say, enough is enough! At what point do I throw in the towel? I could go on but you get the picture - how is that for fitting in cliches? Three in one paragraph! My creative writing prof would kill me.
So I sit late at night thinking through my questions; reading till I get sleepy and praying for an answer. You never know, surprises are always there.
Besides, I choose hope.
I hope to hear tomorrow from the NY docs. I am praying that they say there is time for chemotherapy. Or that they have other options for me. I am scared that removal of another lobe of lung and part of my heart will decrease my capacity that question becomes "What kind of life?"
That is the question that has always haunted me since my diagnosis. At what point do I say, enough is enough! At what point do I throw in the towel? I could go on but you get the picture - how is that for fitting in cliches? Three in one paragraph! My creative writing prof would kill me.
So I sit late at night thinking through my questions; reading till I get sleepy and praying for an answer. You never know, surprises are always there.
Besides, I choose hope.
Friday, April 25, 2008
IT'S BAACCKK!!
What I want to say tongue in cheek is - It's Baacckk! We met with the Chief of Thoracic Surgery of University Hospital today. The heart MRI confirmed that it is a tumor with full occlusion of the right pulmonary vein. The upper lobe of the right lung is nonfunctional. There is significant growth into the heart muscle. The tumor is the size of a large marble. Surgery is a possibility. Right now we are waiting to see if New York concurs and if there is still time for chemotherapy so we can reduce the surgical impact. Or if they have other options there.
All in all, the news was worse than we anticipated. The worse part is the Chief of Surgery in Cleveland is not nearly as good looking as the guy in NY. Darn. Although I have to say his credentials were impressive. He has done four or five of these surgeries before - and he operates on the heart/lung area every day. This is rarer than rare. This guy is right out of Boston and one of the best. I am not even sure that NY can do this operation - even if they are better looking.
So next week we could be scheduling open heart surgery or hopefully, chemotherapy. We hope to know soon. Right now I pray that there is enough alcohol to keep us going through the weekend. Since I am allergic to morphene, why not?
Keep me in your prayers.
All in all, the news was worse than we anticipated. The worse part is the Chief of Surgery in Cleveland is not nearly as good looking as the guy in NY. Darn. Although I have to say his credentials were impressive. He has done four or five of these surgeries before - and he operates on the heart/lung area every day. This is rarer than rare. This guy is right out of Boston and one of the best. I am not even sure that NY can do this operation - even if they are better looking.
So next week we could be scheduling open heart surgery or hopefully, chemotherapy. We hope to know soon. Right now I pray that there is enough alcohol to keep us going through the weekend. Since I am allergic to morphene, why not?
Keep me in your prayers.
Thursday, April 24, 2008
An Unexpected Visit
I received an unexpected visit today. To my surprise, a hero of mine left a message on my website. She isn't probably aware that she is a hero. She left her message out of encouragement. I will be forever grateful.
In my previous entry, I wrote about inspiration coming from unknown places. My inspiration to choose hope came from accidentally watching a Nick Newscast with Linda Ellerbee. I wrote the entry at 10:30 am today. At 5pm, I checked my email and surprise, there was a message from Linda Ellerbee! I was stunned.
Her comment/message is linked to the inspiration entry so you can see the full text.
Many people don't know that I have a minor in telecommunications. I volunteered for a time at my college radio and TV station. Linda Ellerbee was the face of female news reporters at the time. She was everything I wanted to be -- smart, quick, beautiful and take-charge. I wanted to be just like her.
"I have always felt that laughter in the face of reality is probably the finest sound there is and will last until the day when the game is called on account of darkness. In this world, a good time to laugh is any time you can." Linda Ellerbee
I couldn't have said it better.
In my previous entry, I wrote about inspiration coming from unknown places. My inspiration to choose hope came from accidentally watching a Nick Newscast with Linda Ellerbee. I wrote the entry at 10:30 am today. At 5pm, I checked my email and surprise, there was a message from Linda Ellerbee! I was stunned.
Her comment/message is linked to the inspiration entry so you can see the full text.
Many people don't know that I have a minor in telecommunications. I volunteered for a time at my college radio and TV station. Linda Ellerbee was the face of female news reporters at the time. She was everything I wanted to be -- smart, quick, beautiful and take-charge. I wanted to be just like her.
"I have always felt that laughter in the face of reality is probably the finest sound there is and will last until the day when the game is called on account of darkness. In this world, a good time to laugh is any time you can." Linda Ellerbee
I couldn't have said it better.
Inspiration
It has been hard for me to write the past month. I have been waiting for test results; doctor calls and schedules. My head has been somewhere else. I feel that I have been once again taken outside of myself by this cancer.
Despite the past stress and concern over what ever is in my veins at the moment, I have been struck by an unlikely source of inspiration. Inspiration comes from odd places. Apples fall and fundamental laws of physics are born. That is true of what happened to me yesterday.
I was watching Nickelodeon with my son. We caught the end of a Linda Ellerbee (I love her!) news report. She was discussing divorce and separation. Her final words struck me as inspirational not just for children of divorce but for all of us.
Her main theme was that we do have a choice. Despite our feeling of helplessness, we always have a choice. She said that "We can choose hope instead of fear."
That sentence rang like a bell in my head. I can choose hope instead of fear. Yes, the cancer may have hijacked one of my main veins but it hasn't hijacked my soul. Or my life. It has only added another level of complexity. I can handle that. I can take back control. Even if this 'thing' is a tumor there are options, treatments and possibilities. I need to keep that in the forefront of my mind. I cannot let fear rule my decisions. I cannot let fear rule my life.
I choose hope.
Despite the past stress and concern over what ever is in my veins at the moment, I have been struck by an unlikely source of inspiration. Inspiration comes from odd places. Apples fall and fundamental laws of physics are born. That is true of what happened to me yesterday.
I was watching Nickelodeon with my son. We caught the end of a Linda Ellerbee (I love her!) news report. She was discussing divorce and separation. Her final words struck me as inspirational not just for children of divorce but for all of us.
Her main theme was that we do have a choice. Despite our feeling of helplessness, we always have a choice. She said that "We can choose hope instead of fear."
That sentence rang like a bell in my head. I can choose hope instead of fear. Yes, the cancer may have hijacked one of my main veins but it hasn't hijacked my soul. Or my life. It has only added another level of complexity. I can handle that. I can take back control. Even if this 'thing' is a tumor there are options, treatments and possibilities. I need to keep that in the forefront of my mind. I cannot let fear rule my decisions. I cannot let fear rule my life.
I choose hope.
Saturday, April 5, 2008
Keeping My Head in the Game
I have tried to keep my myself mentally active. I am not a stay at home mom. I never hoped to be. Not that I don't enjoy the time with my son but I miss the mental stimulation of work. And I certainly don't envy other stay at home moms - it is hard work!
So I started a non-profit website. www.autismtravel.org I want to travel and write about my experiences. As everywhere I go, my son goes too, I might as well write about it. As a family, we certainly have seen, done and heard it all.
So, if you are interested, take a peek at the site and let me know what you think. Keep checking back because I don't intend to let my current health situation hold me back.
I have bucket list to fill. And every item is far from home!
So I started a non-profit website. www.autismtravel.org I want to travel and write about my experiences. As everywhere I go, my son goes too, I might as well write about it. As a family, we certainly have seen, done and heard it all.
So, if you are interested, take a peek at the site and let me know what you think. Keep checking back because I don't intend to let my current health situation hold me back.
I have bucket list to fill. And every item is far from home!
21 Days
And 21 days later I given myself the last shot. I am truly covered in bruises. Last week when I was swimming in the hotel pool I had several weird looks. My left leg looks like a shark bite. My right leg was covered in bruises. Fortunately, I was wearing a one piece and no one saw my bruised belly.
I am sure that someone thinks I am shooting up. If only it was so easy . . .
I also received a letter from my insurance company. This is perhaps the most difficult part. No it is not payment of two days in a bubble. They want to assign me a private nurse to be on call 24/7 - only a phone call away to assist in managing my case. She will work with us on developing a medical power of attorney and living will. She will work with us on filing the necessary paperwork to ease anything down the road in case the situation changes.
It only reminds that I also need to make funeral arrangements.
Yes, this sounds morbid and I don't intend to go anytime soon but there is a reality to face.
I could get hit by a bus tomorrow.
I could also get news that they need to do open heart surgery to remove a tumor/clot.
When my mother passed, her greatest to gift to all of us was a prearranged funeral. We only had to grieve for her. Everything was taken of. I want to do that my family. My last gift.
Perhaps a living will and medical power of attorney will also remove doubt of what will happen - ease any issues from my husbands mind.
I know that in the quiet of the night I worry about the end. What will it look like? What will it feel like? How will it happen?
Then I wake up and (if lucky) the sun is shinning. My son is ready to play. I have a house to clean and friends to call.
And the night's questions fade.
I am sure that someone thinks I am shooting up. If only it was so easy . . .
I also received a letter from my insurance company. This is perhaps the most difficult part. No it is not payment of two days in a bubble. They want to assign me a private nurse to be on call 24/7 - only a phone call away to assist in managing my case. She will work with us on developing a medical power of attorney and living will. She will work with us on filing the necessary paperwork to ease anything down the road in case the situation changes.
It only reminds that I also need to make funeral arrangements.
Yes, this sounds morbid and I don't intend to go anytime soon but there is a reality to face.
I could get hit by a bus tomorrow.
I could also get news that they need to do open heart surgery to remove a tumor/clot.
When my mother passed, her greatest to gift to all of us was a prearranged funeral. We only had to grieve for her. Everything was taken of. I want to do that my family. My last gift.
Perhaps a living will and medical power of attorney will also remove doubt of what will happen - ease any issues from my husbands mind.
I know that in the quiet of the night I worry about the end. What will it look like? What will it feel like? How will it happen?
Then I wake up and (if lucky) the sun is shinning. My son is ready to play. I have a house to clean and friends to call.
And the night's questions fade.
Subscribe to:
Posts (Atom)