One word to describe the experience: overwhelming
Everyone was as nice as could be, but it took its toll on me. Eric and I arrived at 12:30 PM and did not leave until 5:30. There was lots of waiting . . .
We met my nurse, my PA, and my doctor. Everything is still the same. I had blood drawn today and had another chest x-ray taken. Tomorrow I will have a CT Scan at 6:30 AM and then an MRI Wednesday night at 8:30 PM. Dr. Lin and his team will decide how they will treat me next Tuesday and then I will receive a phone call . . . yes, a phone call on March 16th or 17th. (At least I won't have to deal with parking at the Med Center) And then we will schedule the next step in this journey.
That's all I've got on this end . . . thanks for reading.
Monday, March 8, 2010
Prayers for Leita
As you all know by know, I am very open person and share my heart freely. I have been blessed with vulnerability. I am thankful for this blog. I am thankful for this journey that I am on.
Yesterday I learned that my friend Leita from high school has been dealing with Gastroparesis (paralyzed stomach muscles) for 2 years. She read my blog and shared her amazing journey with me and offered any support she could give me . . . because that is who she is -- a giving person.
Today I ask that you would boldly pray for Leita. Gastroparesis has no cure. Wednesday she has a surgery to put in a gastric pacemaker -- it is their last known option. Please divert the prayers for me today to Miss Leita.
------
Here are some words she shared with me (I asked if I could share them):
Things started off bad and have just gotten worse. The good news is that it has been the opposite mentally for me, I simply started off in despair and have grown into a fully trusting follower who knows God is at work. I fly out today for El Paso to get a gastric pacemaker put in on Wednesday. I have been working with this amazing doctor since last July, and we are finally doing this new procedure. Gastroparesis (paralyzed stomach muscles) has no cure and this is the last method of help, if it doesn't work than you are pretty much stuck on your feeding tube until research catches up. . .
I just want to explain that what your going through is different than me in many ways but there are some things you are going through which I understand that others might not. I am not thankful for my illness because well it has me living in a bed, but I am thankful for the lessons I have learned which people our age dont for a long time. I like who I am characteristically now much more than I did the well person.
-------
And she is right her situation is much different. PLEASE PRAY FOR LEITA. What a dear heart to reach out to me when she has so much going on right now. I am so thankful for her and what she is learning. I am inspired by her journey and I hope you will be too.
Just some thoughts on a rainy Monday in Houston . . .
Yesterday I learned that my friend Leita from high school has been dealing with Gastroparesis (paralyzed stomach muscles) for 2 years. She read my blog and shared her amazing journey with me and offered any support she could give me . . . because that is who she is -- a giving person.
Today I ask that you would boldly pray for Leita. Gastroparesis has no cure. Wednesday she has a surgery to put in a gastric pacemaker -- it is their last known option. Please divert the prayers for me today to Miss Leita.
------
Here are some words she shared with me (I asked if I could share them):
Things started off bad and have just gotten worse. The good news is that it has been the opposite mentally for me, I simply started off in despair and have grown into a fully trusting follower who knows God is at work. I fly out today for El Paso to get a gastric pacemaker put in on Wednesday. I have been working with this amazing doctor since last July, and we are finally doing this new procedure. Gastroparesis (paralyzed stomach muscles) has no cure and this is the last method of help, if it doesn't work than you are pretty much stuck on your feeding tube until research catches up. . .
I just want to explain that what your going through is different than me in many ways but there are some things you are going through which I understand that others might not. I am not thankful for my illness because well it has me living in a bed, but I am thankful for the lessons I have learned which people our age dont for a long time. I like who I am characteristically now much more than I did the well person.
-------
And she is right her situation is much different. PLEASE PRAY FOR LEITA. What a dear heart to reach out to me when she has so much going on right now. I am so thankful for her and what she is learning. I am inspired by her journey and I hope you will be too.
Just some thoughts on a rainy Monday in Houston . . .
Saturday, March 6, 2010
The Next Step: MD Anderson
I received the final diagnosis from MD Anderson this week and all I could do was laugh. Yes, laugh.
Final Diagnosis: Unclassified High Grade Sarcoma
Yes, I am so unique that they do not even have a name for the type of sarcoma that I have.
Nothing has really changed with that final diagnosis. It is no better or worse. It just is. But the GOOD NEWS is that I have my first appointment at MD Anderson on Monday, March 8th. I will be seeing Dr. Patrick Lin, who just so happened to do his residency at UNC Chapel Hill Hospital were my sister is currently doing her residency! I have to say I felt relieved when I read that because I felt some sort of connection to Dr. Lin.
My referral nurse, Janice, has been so helpful and has made my transition from Dr. Lou’s office to MD Anderson an easy one. She has been so nice and comforting on the phone.
Just some thoughts . . .
Final Diagnosis: Unclassified High Grade Sarcoma
Yes, I am so unique that they do not even have a name for the type of sarcoma that I have.
Nothing has really changed with that final diagnosis. It is no better or worse. It just is. But the GOOD NEWS is that I have my first appointment at MD Anderson on Monday, March 8th. I will be seeing Dr. Patrick Lin, who just so happened to do his residency at UNC Chapel Hill Hospital were my sister is currently doing her residency! I have to say I felt relieved when I read that because I felt some sort of connection to Dr. Lin.
My referral nurse, Janice, has been so helpful and has made my transition from Dr. Lou’s office to MD Anderson an easy one. She has been so nice and comforting on the phone.
Just some thoughts . . .
The Back Story
Well . . . I never expected that I would have a website for the treatment of the mass formerly known as Cecil.
The Back Story
In September, I noticed a bump under my skin. It barely grew at all . . . no worries.
In December, it was a little bigger. I could sometimes see it stick out of the skin. One day I put up my clothes in the closet and I heard, "POP." My bump popped under my skin. It bruised my upper arm. It disappeared for a day or two. Then it grew back bigger. I decided I needed to go to the doctor. I went. Doctor said it is probably a cyst. No big deal. Unless there is a big change, don't worry.
In January, my cyst got a name, Cecil. It started to grow faster. It protruded from my arm. It was bruised all of the time. It started to hurt. I decided to go back to the doctor.
Doctor says, OMG! That grew a lot. That thing needs to come out. She tries to schedule me with a surgeon the following Monday.
In February, I finally get in to see the surgeon. He says, ohh, that must go. I tell him about Cecil. He laughs. My doctor is not convinced it is a cyst, but has no other suggestion.
The weekend before the surgery, I decided that Cecil was my long lost twin brother that I absorbed during my mother's pregnancy. I really thought/hoped the doctor will find teeth and maybe some hair.
http://www.youtube.com/watch?v=mWispEM3900
Surgery was Thursday, Jan. 11th. Unfortunately, Cecil was not my long lost twin. Lots of great stories could have come from that. He was the size of a key lime.
A week later I returned to my surgeon to get my stitches out and have my follow up appointment.
Dr. Lou said, "Cecil is not your friend." Ok . . . I thought in my head as I remembered how Eric wanted to join me for the pathology results and how I insisted that I could go on my own. (I was convinced the mass was just a cyst -- a no big deal kind of thing)
Unfortunately, the mass (he no longer gets to be called a name) is a malignant tumor. More tests were needed to fully determine what type of cancer the mass, formerly know n as Cecil was. Dr. Lou said they had some ideas but that I needed to come back in a week for the final pathology results.
Tears poured from my eyes as I told my sister, Brooke, and my mom and dad the news over the telephone. That was the hardest part of that day was knowing that I would have to tell the people I love that I have cancer. I showed up on Eric’s doorstep . . . like I had promised I would if the follow up didn’t go well. Eric called a few friends to come and pray with me and just be around us during this emotional time.
The days dragged on and Thursday finally came – again. But this time I had my team - my parents and my honey, Eric.
The preliminary diagnosis: Extraskeletal Ewing's Sarcoma/PNET
That day we were still waiting for a final consensus from MD Anderson. Apparently I am missing the chromosome rearrangement that usually causes this type of cancer and my mass gave the pathologists at Memorial Hermann more than they could bargain for.
But we still got GOOD NEWS: the MRI and the chest x-ray showed that there wasn’t any spreading of the areas scanned! That was huge! More good news, if it does end up being this rare type of Ewing's Sarcoma, then it doesn't affect bone. This makes my prognosis really good.
I have been referred to the oncologists at MD Anderson, so that will be the next step in the puzzle. They will most likely treat me from here on out. They will give me options on how to proceed.
Praise God for some light in this dark situation, for peace that transcends all understanding, and laughter. When I get the final diagnosis and method of treatment, I will pass it on through my postings.
The Back Story
In September, I noticed a bump under my skin. It barely grew at all . . . no worries.
In December, it was a little bigger. I could sometimes see it stick out of the skin. One day I put up my clothes in the closet and I heard, "POP." My bump popped under my skin. It bruised my upper arm. It disappeared for a day or two. Then it grew back bigger. I decided I needed to go to the doctor. I went. Doctor said it is probably a cyst. No big deal. Unless there is a big change, don't worry.
In January, my cyst got a name, Cecil. It started to grow faster. It protruded from my arm. It was bruised all of the time. It started to hurt. I decided to go back to the doctor.
Doctor says, OMG! That grew a lot. That thing needs to come out. She tries to schedule me with a surgeon the following Monday.
In February, I finally get in to see the surgeon. He says, ohh, that must go. I tell him about Cecil. He laughs. My doctor is not convinced it is a cyst, but has no other suggestion.
The weekend before the surgery, I decided that Cecil was my long lost twin brother that I absorbed during my mother's pregnancy. I really thought/hoped the doctor will find teeth and maybe some hair.
http://www.youtube.com/watch?v=mWispEM3900
Surgery was Thursday, Jan. 11th. Unfortunately, Cecil was not my long lost twin. Lots of great stories could have come from that. He was the size of a key lime.
A week later I returned to my surgeon to get my stitches out and have my follow up appointment.
Dr. Lou said, "Cecil is not your friend." Ok . . . I thought in my head as I remembered how Eric wanted to join me for the pathology results and how I insisted that I could go on my own. (I was convinced the mass was just a cyst -- a no big deal kind of thing)
Unfortunately, the mass (he no longer gets to be called a name) is a malignant tumor. More tests were needed to fully determine what type of cancer the mass, formerly know n as Cecil was. Dr. Lou said they had some ideas but that I needed to come back in a week for the final pathology results.
Tears poured from my eyes as I told my sister, Brooke, and my mom and dad the news over the telephone. That was the hardest part of that day was knowing that I would have to tell the people I love that I have cancer. I showed up on Eric’s doorstep . . . like I had promised I would if the follow up didn’t go well. Eric called a few friends to come and pray with me and just be around us during this emotional time.
The days dragged on and Thursday finally came – again. But this time I had my team - my parents and my honey, Eric.
The preliminary diagnosis: Extraskeletal Ewing's Sarcoma/PNET
That day we were still waiting for a final consensus from MD Anderson. Apparently I am missing the chromosome rearrangement that usually causes this type of cancer and my mass gave the pathologists at Memorial Hermann more than they could bargain for.
But we still got GOOD NEWS: the MRI and the chest x-ray showed that there wasn’t any spreading of the areas scanned! That was huge! More good news, if it does end up being this rare type of Ewing's Sarcoma, then it doesn't affect bone. This makes my prognosis really good.
I have been referred to the oncologists at MD Anderson, so that will be the next step in the puzzle. They will most likely treat me from here on out. They will give me options on how to proceed.
Praise God for some light in this dark situation, for peace that transcends all understanding, and laughter. When I get the final diagnosis and method of treatment, I will pass it on through my postings.
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