I have more appointments next week. I will have blood work done again, meet with my orthopedic surgeon, meet with my anesthesiologist, and fill out my pre-op paperwork.
My surgery will be at MD Anderson on Thursday, April 1st. My parents will be coming in to support me, and they will be here for me however I need them. They are wonderful!
Love,
s
Thursday, March 25, 2010
Wednesday, March 24, 2010
Plan A, B, C, & D
Today I went to see my plastic surgeon at MD Anderson. Eric came with me to be another set of ears. I really appreciated him being there. MD Anderson never ceases to be intimidating. I have uncovered some parking techniques and elevator knowledge that helps me zip right in . . . but I never seem to know how to get out. :o)
Dr. Adelman seems like a good surgeon; he was informative and laughed at my jokes. He definitely had a nice bedside manner. He basically told Eric and I what his role might be during my next surgery.
Plan A: Nothing, my orthopedic surgeon will remove the cancer cells and close up the arm
Plan B: He will move around some arm tissue and close the incision
Plan C: Create a skin graft, remove skin from my groin or upper thigh and move it to my arm -- my arm would have to stay immobile 7 days for the graft to take
Plan D: Move muscle from my back to my arm -- if so much is removed they need more tissue
He most likely thinks it will be A or B but he wanted to give me the other two options just in case.
I will have a pre-op appointment with my orthopedic surgeon, Dr. Lin, and then an appointment with my anesthesiologist. Surgery is tentatively set for next Thursday, April 1st. hmmm... april fools. But it is also Maundy Thursday so I think they will balance each other out!
Thanks for reading,
s
Dr. Adelman seems like a good surgeon; he was informative and laughed at my jokes. He definitely had a nice bedside manner. He basically told Eric and I what his role might be during my next surgery.
Plan A: Nothing, my orthopedic surgeon will remove the cancer cells and close up the arm
Plan B: He will move around some arm tissue and close the incision
Plan C: Create a skin graft, remove skin from my groin or upper thigh and move it to my arm -- my arm would have to stay immobile 7 days for the graft to take
Plan D: Move muscle from my back to my arm -- if so much is removed they need more tissue
He most likely thinks it will be A or B but he wanted to give me the other two options just in case.
I will have a pre-op appointment with my orthopedic surgeon, Dr. Lin, and then an appointment with my anesthesiologist. Surgery is tentatively set for next Thursday, April 1st. hmmm... april fools. But it is also Maundy Thursday so I think they will balance each other out!
Thanks for reading,
s
Tuesday, March 23, 2010
Grant: I wish you would have answered your phone today
On my drive home from work today, I wanted to call my friend Grant. The weather was mild and sunny and I had a pretty good day; it seemed like the perfect day to call my friend. I looked through my contact list and found his name. I looked at the letters G-r-a-n-t and the phone number that has yet to be erased. I longed to talk to him today.
It hits me out of nowhere. I will hear a funny joke or see a movie advertisement and I will think of Grant. In those moments, I am sent back to a season in my life in which I was entertained by the greatest comedian I will ever know. If you ever had the opportunity to meet him, you know exactly what I mean. Yet, behind all of the laughs, was an amazingly, courageous man battling such a damaging disease, vasculitis.
I like to think that Grant is putting in good words for me in heaven, my guardian angel if you will. I look forward to seeing him again and thanking him in person (or spirit). Next month will be the one year anniversary of Grant's passing. I know that he is in a much better place, free of pain and needles and dialysis machines. But sometimes, I selfishly want him here. I want to hang out and watch movies. I want to laugh at his jokes. I want to sit by his side and keep him company.
So tonight, Grant, thank you for being a friend to many and an inspiration to all. You will always have a place in my heart. I love you, friend.
It hits me out of nowhere. I will hear a funny joke or see a movie advertisement and I will think of Grant. In those moments, I am sent back to a season in my life in which I was entertained by the greatest comedian I will ever know. If you ever had the opportunity to meet him, you know exactly what I mean. Yet, behind all of the laughs, was an amazingly, courageous man battling such a damaging disease, vasculitis.
I like to think that Grant is putting in good words for me in heaven, my guardian angel if you will. I look forward to seeing him again and thanking him in person (or spirit). Next month will be the one year anniversary of Grant's passing. I know that he is in a much better place, free of pain and needles and dialysis machines. But sometimes, I selfishly want him here. I want to hang out and watch movies. I want to laugh at his jokes. I want to sit by his side and keep him company.
So tonight, Grant, thank you for being a friend to many and an inspiration to all. You will always have a place in my heart. I love you, friend.
Friday, March 19, 2010
Consult with Plastics Scheduled and Giving Back
Wednesday, March 24th I will have a consultation with my new plastic surgeon from MD Anderson. This should bring me a step closer to having the actual surgery.
On another note, today I filled out volunteer information for MD Anderson. As I have journeyed through being diagnosed with cancer and all of the unknowns, I have decided that I want to help others in the same situations I faced. I am not sure what it will look like, but it is clear that I want to help people experiencing such a difficult time in their lives. I look forward to the challenges that lay ahead of me serving in this way. I know that God has great plans for me and I truly believe that He wants me to be light in a very uncertain place.
Love,
s
On another note, today I filled out volunteer information for MD Anderson. As I have journeyed through being diagnosed with cancer and all of the unknowns, I have decided that I want to help others in the same situations I faced. I am not sure what it will look like, but it is clear that I want to help people experiencing such a difficult time in their lives. I look forward to the challenges that lay ahead of me serving in this way. I know that God has great plans for me and I truly believe that He wants me to be light in a very uncertain place.
Love,
s
Thursday, March 18, 2010
Still in Awe . . .
I wanted to thank you for your prayers for my dear friend Leita. It has truly been a blessing to be able to share my experience with her and for her to share with me. It is amazing how hard circumstances have the ability to pull people together again.
Leita is out the hospital and hopefully flying home to San Antonio today. The travel has been hard on her body, but she has such a brillant attitude! She is slowly introducing new foods into her diet and has not thrown up! It is wonderful! Just imagine for a minute reexperiencing food again . . . the tastes, the textures, the smells . . . It is a miracle.
Today I had my ultrasound and they did not find any blood clots! Woohoo! But just remember, I am bit unique. So instead they discovered that I have positional thrombosis. From what I gather, it just means that when I put my arms over my head the vein constricts and very little blood can flow through. This can cause me to be light headed. It is rare and they decided to take a video of my vein as I moved my arm up and down. I felt pretty proud that I could help develop the minds of medical professionals with my weird-ness.
And the second best advice I have received, "Do not walk around with your hands over your head."
Love you all.
Leita is out the hospital and hopefully flying home to San Antonio today. The travel has been hard on her body, but she has such a brillant attitude! She is slowly introducing new foods into her diet and has not thrown up! It is wonderful! Just imagine for a minute reexperiencing food again . . . the tastes, the textures, the smells . . . It is a miracle.
Today I had my ultrasound and they did not find any blood clots! Woohoo! But just remember, I am bit unique. So instead they discovered that I have positional thrombosis. From what I gather, it just means that when I put my arms over my head the vein constricts and very little blood can flow through. This can cause me to be light headed. It is rare and they decided to take a video of my vein as I moved my arm up and down. I felt pretty proud that I could help develop the minds of medical professionals with my weird-ness.
And the second best advice I have received, "Do not walk around with your hands over your head."
Love you all.
Wednesday, March 17, 2010
GREAT News!
In complete adoration, I praise my Father in Heaven.
Psalm 145
You have been on journey with me full of highs and lows, of unknowns and truths, and of praise and petition. Today I come to you with wonderful news. News that would not have been possible without you constant prayers. I truly believe God intervened in so many ways. I am still in the midst of meditating on His awesome works, but I have to share with you and proclaim His goodness.
Today I spoke with Dr. Lin, my surgeon from MD Anderson, and he verified that all of the new tests show that the cancer has NOT spread. Because the cancer has not spread, is superficial, and small, the Sarcoma Conference decided that neither chemotherapy nor radiation would be necessary. NEITHER! However, had my cancer been the Extraskeletal Ewing's Sarcoma that was first diagnosed, it would have required chemotherapy. I account this good news to God answering prayers and holding me tight.
This is a huge relief and PRAISE. I asked God, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." The cup has been taken from me.
I will have surgery to remove all of the cells that are malignant until there are clear margins. This will most likely occur in the next month. Dr. Lin said he could schedule it next week, but he would feel better if there was a plastic surgeon standing by if they have to use a skin graft to close the incision. Plastic surgeons are busy and Dr. Lin thinks it could take a month for it to be scheduled. He is not worried about waiting until then. After the surgery, I will have routine observations to monitor the area.
There is one concern; he thinks that I might have a blood clot in my right shoulder. Tomorrow I will go for an ultrasound at 8:30 AM to see if that is the case or if I just have a narrow vein. If it is a blood clot, then I will start blood thinners by injection daily. Really no big deal -- compared to what I what I was up against.
I will continue to keep you updated. Again thank you for your concern and you love and your intercession.
With love, hugs and gratitude,
s
Psalm 145
You have been on journey with me full of highs and lows, of unknowns and truths, and of praise and petition. Today I come to you with wonderful news. News that would not have been possible without you constant prayers. I truly believe God intervened in so many ways. I am still in the midst of meditating on His awesome works, but I have to share with you and proclaim His goodness.
Today I spoke with Dr. Lin, my surgeon from MD Anderson, and he verified that all of the new tests show that the cancer has NOT spread. Because the cancer has not spread, is superficial, and small, the Sarcoma Conference decided that neither chemotherapy nor radiation would be necessary. NEITHER! However, had my cancer been the Extraskeletal Ewing's Sarcoma that was first diagnosed, it would have required chemotherapy. I account this good news to God answering prayers and holding me tight.
This is a huge relief and PRAISE. I asked God, "My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will." The cup has been taken from me.
I will have surgery to remove all of the cells that are malignant until there are clear margins. This will most likely occur in the next month. Dr. Lin said he could schedule it next week, but he would feel better if there was a plastic surgeon standing by if they have to use a skin graft to close the incision. Plastic surgeons are busy and Dr. Lin thinks it could take a month for it to be scheduled. He is not worried about waiting until then. After the surgery, I will have routine observations to monitor the area.
There is one concern; he thinks that I might have a blood clot in my right shoulder. Tomorrow I will go for an ultrasound at 8:30 AM to see if that is the case or if I just have a narrow vein. If it is a blood clot, then I will start blood thinners by injection daily. Really no big deal -- compared to what I what I was up against.
I will continue to keep you updated. Again thank you for your concern and you love and your intercession.
With love, hugs and gratitude,
s
Monday, March 15, 2010
And Still Waiting . . .
This life, therefore, is not godliness but the process of becoming godly, not health but getting well, not being but becoming, not rest but exercise. We are not now what we shall be, but we are on the way. The process is not yet finished, but it is actively going on. This is not the goal but it is the right road. At present, everything does not gleam and sparkle, but everything is being cleansed. --Martin Luther
This Luther quote has been on my heart since I was introduced to it at small group a few weeks ago. At times I find myself frustrated with waiting and more waiting. My ability to control things has been stripped away and, man, it sucks. Right now I am waiting for my team of doctors to review my case tomorrow. I am on the agenda so it should happen. But I feel like my life is on hold.
I look at the pictures taken before all of this happened. Sometimes, I just wish I was back in those seemingly simpler moments. I wish I could focus on getting a serious tan this spring break and making summer plans . . . but it is all in limbo. I know, I know . . . it could be a lot worse. I know, I get it. But I also want you to know that this process has not been the easiest for me. I am peaceful and positive. But I have my moments, and I am realizing that it is ok that I have my moments. Some of the best advice that I have received is, "Sarah, you do not have to be a super hero through this. In fact, God wouldn't want you to be the super hero." It didn't hit me until that very moment that I didn't have to be strong all of the time. Wow, that is a huge relief.
And so when I start to question and be frustrated, I think of Luther's quote and the idea that I am on a journey. I think, "At present, everything does not gleam and sparkle, but everything is being cleansed."
Thank you for being part of my journey.
This Luther quote has been on my heart since I was introduced to it at small group a few weeks ago. At times I find myself frustrated with waiting and more waiting. My ability to control things has been stripped away and, man, it sucks. Right now I am waiting for my team of doctors to review my case tomorrow. I am on the agenda so it should happen. But I feel like my life is on hold.
I look at the pictures taken before all of this happened. Sometimes, I just wish I was back in those seemingly simpler moments. I wish I could focus on getting a serious tan this spring break and making summer plans . . . but it is all in limbo. I know, I know . . . it could be a lot worse. I know, I get it. But I also want you to know that this process has not been the easiest for me. I am peaceful and positive. But I have my moments, and I am realizing that it is ok that I have my moments. Some of the best advice that I have received is, "Sarah, you do not have to be a super hero through this. In fact, God wouldn't want you to be the super hero." It didn't hit me until that very moment that I didn't have to be strong all of the time. Wow, that is a huge relief.
And so when I start to question and be frustrated, I think of Luther's quote and the idea that I am on a journey. I think, "At present, everything does not gleam and sparkle, but everything is being cleansed."
Thank you for being part of my journey.
Thursday, March 11, 2010
Tests Completed for Now
Tuesday, March 9th: The Early Bird Gets the CT Scan -- On Time!
Eric so wonderfully took me to my scan at 6 AM. Everything went well; my nurse was very friendly and made me feel at ease for my first CT Scan. Really she made all of the difference. The contrast that they put in my veins was uncomfortable, but it didn't take long. After my scan, I went into work. I work for an amazing school. My administrators have been so helpful and the teachers have been so supportive. One of our teachers covered my class until I made it back to school. (This is just one of so many ways they have helped me.) I am truly blessed.
Wednesday, March 10th: Leita's Surgery
Leita had her surgery yesterday. There were some disappointments but also some victories. Please continue to pray for her healing and for her pain to get under control. Also pray for the doctors and hospital staff involved - that they would find ways to work together to help Leita. She is truly amazing; she emailed me asking me about how I was doing just hours after her surgery.
Leita = Self-less.
Wednesday, March 10th: The MRI: hmmm . . . the last appointment for the night
My wonderful friend Elizabeth took me to my MRI at 8 PM. I later found out that she had a test on Thursday, but she so kindly failed to mention that when I asked her the night before :o).
Unfortunately, I had an unpleasant experience with the intake administrative staff member. -- Something about my medical ID number and memorizing it -- Anyway, my MRI technician was WONDERFUL. She took very good care of me. When I was being pushed into the machine, all of my padding smooshed my face; it was AWESOME! She pulled me back out, and I laughed and laughed. It was perfect timing for comic relief. When I came out of the MRI room, Elizabeth was sitting in the back. Apparently the administrative staff wanted to go home and she was the only one left so they told her to go to the back. MD Anderson was completely silent when we left . . . kind of creepy. I was glad to have someone with me! I walked into my house at 11:45 PM knowing that I needed to get some rest for school the next day. Instead of going straight to bed, I got on my computer and booked a flight to North Carolina to leave Friday. My parents had already planned on visiting my sister and I just decided that I wanted to be there too. I am in much need of some love from my mom, dad, and Booke.
Stay Tuned for Treatment News -- Coming to a Computer Near You Tuesday, Wednesday or Thursday
Eric so wonderfully took me to my scan at 6 AM. Everything went well; my nurse was very friendly and made me feel at ease for my first CT Scan. Really she made all of the difference. The contrast that they put in my veins was uncomfortable, but it didn't take long. After my scan, I went into work. I work for an amazing school. My administrators have been so helpful and the teachers have been so supportive. One of our teachers covered my class until I made it back to school. (This is just one of so many ways they have helped me.) I am truly blessed.
Wednesday, March 10th: Leita's Surgery
Leita had her surgery yesterday. There were some disappointments but also some victories. Please continue to pray for her healing and for her pain to get under control. Also pray for the doctors and hospital staff involved - that they would find ways to work together to help Leita. She is truly amazing; she emailed me asking me about how I was doing just hours after her surgery.
Leita = Self-less.
Wednesday, March 10th: The MRI: hmmm . . . the last appointment for the night
My wonderful friend Elizabeth took me to my MRI at 8 PM. I later found out that she had a test on Thursday, but she so kindly failed to mention that when I asked her the night before :o).
Unfortunately, I had an unpleasant experience with the intake administrative staff member. -- Something about my medical ID number and memorizing it -- Anyway, my MRI technician was WONDERFUL. She took very good care of me. When I was being pushed into the machine, all of my padding smooshed my face; it was AWESOME! She pulled me back out, and I laughed and laughed. It was perfect timing for comic relief. When I came out of the MRI room, Elizabeth was sitting in the back. Apparently the administrative staff wanted to go home and she was the only one left so they told her to go to the back. MD Anderson was completely silent when we left . . . kind of creepy. I was glad to have someone with me! I walked into my house at 11:45 PM knowing that I needed to get some rest for school the next day. Instead of going straight to bed, I got on my computer and booked a flight to North Carolina to leave Friday. My parents had already planned on visiting my sister and I just decided that I wanted to be there too. I am in much need of some love from my mom, dad, and Booke.
Stay Tuned for Treatment News -- Coming to a Computer Near You Tuesday, Wednesday or Thursday
Monday, March 8, 2010
MD Anderson: First Appointment
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.
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.
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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