I just read a beautiful inspirational book about looking and loving a person's imperfections. None of us are perfect. We have flaws and errors. The book emphasized that we need to embrace the flaws and allow people to share in our grief over those flaws. When walking on the beach, admire the beauty of the broken shell as well as the perfect shell.
This is very hard for me. I want to retreat into the imaginary perfect shell. I want to pretend that life is not as fragile as I know it. I want to believe that I can go out and smile and be a whole, perfect shell.
Instead I am reminded daily that I am a broken shell. I need to reach out to all of the shells for support. That is a real battering to my broken shell ego.
I recall the beauty of the Serenity Prayer.
God grant me the serenity to accept the things I cannot change; courage to change the things I can;and wisdom to know the difference.
Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful worldas it is, not as I would have it; Trusting that He will make all things rightif I surrender to His Will;That I may be reasonably happy in this life and supremely happy with HimForever in the next.Amen.
--Reinhold Niebuhr
Sunday, May 4, 2008
Thursday, May 1, 2008
I Passed!
Let's Celebrate! Today I heard from the surgeon in Cleveland and I am eligible for surgery. I passed all of my lung tests. The doc may order a PET scan which may change all of the plans again. Surgery is tentatively scheduled for next Wednesday. They are going to take the tumor from the right pulmonary vein, up to 20% of the left atrium and the upper right lobe of the lung. They will try to save the middle lobe and reimplant the vein into the heart. I will be in the hospital from four to seven days. I will be put on a heart and lung machine just like a bypass surgery. They hope to control pain afterwards with an epidural of which I am so grateful since I am allergic to narcotics! Yes, I am wimp when I think of the pain.
Even better news is that I can start chemo as early as four weeks after surgery. Yes, this is aggressive but it gives me the greatest chance for overall survival.
So lift a glass of wine to me and thank God that they can do surgery! In two weeks I will be home and walking the block again (OK, maybe not the block but the driveway!)
Even better news is that I can start chemo as early as four weeks after surgery. Yes, this is aggressive but it gives me the greatest chance for overall survival.
So lift a glass of wine to me and thank God that they can do surgery! In two weeks I will be home and walking the block again (OK, maybe not the block but the driveway!)
Wednesday, April 30, 2008
Breathe In, Breathe Out
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.
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.
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.
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