My computer is sick! Has lots of 'threats' on it...but I'm not contagious!!!! If you get anything...it's not from me!
I am scheduled for tomorrow (Tuesday) to have the 'new' port put in. I had it removed when I had the one liver lesion ablated in April....that last round of chemo did me in and I just didn't ever want to go through that again.....but now....I have to do it all over again!
Then on Wednesday I start my chemo 'cocktail' all over again. Not sure how long I will have to go...as I am scheduled for a CT and MRI scan the end of August and the first week of Sept. I have an appt. in NYC to see Dr. Kemeny again. Right now the cocktail will be administered in Sparta and both doctors: Dr. K and Dr. May will work together to decide on 'what' cocktail and the amount to be given.
They say, as I forgot, that I shouldn't work until 10 days after the port is in....so I'll have a mini vacation.
Today I changed my bed sheets so I don't have to worry about that. Last night I totally enjoyed sleeping on my left side with my arm under the pillow...which will be very uncomfortable once the port is put back in. Very busy today....
And so, a new journey begins....................last round of chemo ended January 4th; ablation and port removed on April 4th; and now a new port and chemo.......
Monday, July 9, 2012
Thursday, July 5, 2012
Thursday, July 5, 2012
When a holiday falls in the middle of the week - I never remember what day it is....I now know it's Thursday! but I will still have to look at a calendar if you'd ask me again!!
Went to finally have a bite for lunch about 2:30 ish....the phone rang - and it was the surgeon, Dr. Allen. He said he was sorry he didn't call me any sooner as he has been in conferences for the past few days. He agrees with Dr. Kemeny that I should do the 'regular' chemo first - to get the two lesions from my lungs....and 'yes' it is written in the report....Dr. Allen also said I'm still a good candidate for this pump....but we will now take baby steps and see what the 'new' CT and MRI scan show --- appointment is scheduled for late August.
I also asked him 'why' I would still need regular chemo while getting this chemo with the pump. He said he's not too sure IF that would be needed after these new lesions are gone (liver and lungs)....but I'd have to be monitored very closely - having the scans.....
I also mentioned to him about the waiting time - while waiting I would greatly appreciate hearing 'any' news (good or bad) ahead of time so I can deal with the situation. He said he would note that in my file and agrees with me.
Then I lost my appetite! I did get it back a short while later!!! Heavens to Betsy - ME, how could I ever skip a meal???!!!!
I also received a call from Dr. May's nurse and she is going to see if I can do the chemo next week - the day after or next to begin the chemo.....I also said that Dr. Kemeny would 'suggest' what chemo to use. She and Dr. May would work together. So, she will see if they have the Panatumab in - or Dr. K. said she would be able to get it....
Oh this is so exciting! NOT....to begin all this - again....One step forward - two steps back....but I'm still alive! and feeling quite well!
I'll never stop saying this....Thank YOU (all) for emailing me back and expressing your feelings of support! I think you are all special - giving words of being positive when it's so hard to find them yourself....for those of you that 'have no words to share'....I understand!!! Everyone expresses themselves in different ways....but I did want to 'thank you' for being there - on the other end - reading (listening) to my woes.
Went to finally have a bite for lunch about 2:30 ish....the phone rang - and it was the surgeon, Dr. Allen. He said he was sorry he didn't call me any sooner as he has been in conferences for the past few days. He agrees with Dr. Kemeny that I should do the 'regular' chemo first - to get the two lesions from my lungs....and 'yes' it is written in the report....Dr. Allen also said I'm still a good candidate for this pump....but we will now take baby steps and see what the 'new' CT and MRI scan show --- appointment is scheduled for late August.
I also asked him 'why' I would still need regular chemo while getting this chemo with the pump. He said he's not too sure IF that would be needed after these new lesions are gone (liver and lungs)....but I'd have to be monitored very closely - having the scans.....
I also mentioned to him about the waiting time - while waiting I would greatly appreciate hearing 'any' news (good or bad) ahead of time so I can deal with the situation. He said he would note that in my file and agrees with me.
Then I lost my appetite! I did get it back a short while later!!! Heavens to Betsy - ME, how could I ever skip a meal???!!!!
I also received a call from Dr. May's nurse and she is going to see if I can do the chemo next week - the day after or next to begin the chemo.....I also said that Dr. Kemeny would 'suggest' what chemo to use. She and Dr. May would work together. So, she will see if they have the Panatumab in - or Dr. K. said she would be able to get it....
Oh this is so exciting! NOT....to begin all this - again....One step forward - two steps back....but I'm still alive! and feeling quite well!
I'll never stop saying this....Thank YOU (all) for emailing me back and expressing your feelings of support! I think you are all special - giving words of being positive when it's so hard to find them yourself....for those of you that 'have no words to share'....I understand!!! Everyone expresses themselves in different ways....but I did want to 'thank you' for being there - on the other end - reading (listening) to my woes.
comments....FYI
FYI....
just in case you try to leave a 'comment'...for some unknown reason - I haven't gotten them....so if you'd like to 'comment'...just send me an email....
just in case you try to leave a 'comment'...for some unknown reason - I haven't gotten them....so if you'd like to 'comment'...just send me an email....
Tuesday, July 3, 2012
The Palm Beach Post REAL NEWS STARTS HERE - Tuesday, June 19, 2012
Doc's poem a tribute to survivors
Dr. Jerome Spunberg is a radiation oncologist who has worked in South Florida for more than two decades. He is a poet and wrote a poem for a group of survivors in 2002. He showed it to me and I thought the sentiments were still applicable 10 years later. Here is a tribute to survivors -- past, present and future:
Our lives are unpredictable, so little we control
So much is still a mystery -- our origins, our soul
We often pause to wonder why things happen as they do
We all must face our challenges, it could be me or you
But how we play the cards we're dealt, is something we control
We're often really unprepared to play our given role.
We often learn right on the job, the job that must be done
In caring for someone we love, a mother, a friend, or son.
We all are born with instincts, chief among them to survive
There is a force within us pushing us to stay alive
A force we're not aware of until threat of death appears
A force that helps us overcome our squeamishness and fears
A force that moves you to go on, when you feel like turning back
A force that keep you on the path, like horses on a track
A force that makes you stronger than you ever thought you'd be
A force that's inspirational, that sets your spirit free
And all of you are testament to courage at its best
The courage to put pessimism, hopeless to rest
The courage that inspires you to go that extra mile
The courage to come in that day, when you would rather quit
The courage to get up and walk when you would rather sit
The courage to sit down to eat, when food has no appeal
The courage to go on with life no matter how you feel
To celebrate how far you've come, how much you have endured
So much doubt, uncertainty, the outcome not assured
To reach this point, to stand up proud, knowing that the way,
The secret to survival is to take it day by day
And so we now salute you, for you all we do admire
Your presence here is moving, you encourage, you inspire
You are a prime example of the heroes we can be
The strength that we discover as we face adversity
So raise your glasses high and toast the heroes that you are
Ordinary people with the strength to get this far
Living proof to everyone that we all have the drive
To live life to the fullest, yes, able all, to survive!
==========
Dr. Melanie Bone is a cancer survivor and gynecologist who practices in West Pal Beach. Have a question? Go to http://www.cancersensibiltyfoundation.org/ or PalmBeachPost.com/health (click on the 'ask a question' link). Any questions submitted to Dr. Bone will be considered for her column. You may also visit http://www.cancershopusa.com/
The courage to put pessimism, hopelessness to rest.
The courage to wake up each day, and try to wear a smile
The courage that inspires you fo go that extra mile
The courage to come in that day, when you would rather call it quits
Dr. Jerome Spunberg is a radiation oncologist who has worked in South Florida for more than two decades. He is a poet and wrote a poem for a group of survivors in 2002. He showed it to me and I thought the sentiments were still applicable 10 years later. Here is a tribute to survivors -- past, present and future:
Our lives are unpredictable, so little we control
So much is still a mystery -- our origins, our soul
We often pause to wonder why things happen as they do
We all must face our challenges, it could be me or you
But how we play the cards we're dealt, is something we control
We're often really unprepared to play our given role.
We often learn right on the job, the job that must be done
In caring for someone we love, a mother, a friend, or son.
We all are born with instincts, chief among them to survive
There is a force within us pushing us to stay alive
A force we're not aware of until threat of death appears
A force that helps us overcome our squeamishness and fears
A force that moves you to go on, when you feel like turning back
A force that keep you on the path, like horses on a track
A force that makes you stronger than you ever thought you'd be
A force that's inspirational, that sets your spirit free
And all of you are testament to courage at its best
The courage to put pessimism, hopeless to rest
The courage that inspires you to go that extra mile
The courage to come in that day, when you would rather quit
The courage to get up and walk when you would rather sit
The courage to sit down to eat, when food has no appeal
The courage to go on with life no matter how you feel
To celebrate how far you've come, how much you have endured
So much doubt, uncertainty, the outcome not assured
To reach this point, to stand up proud, knowing that the way,
The secret to survival is to take it day by day
And so we now salute you, for you all we do admire
Your presence here is moving, you encourage, you inspire
You are a prime example of the heroes we can be
The strength that we discover as we face adversity
So raise your glasses high and toast the heroes that you are
Ordinary people with the strength to get this far
Living proof to everyone that we all have the drive
To live life to the fullest, yes, able all, to survive!
==========
Dr. Melanie Bone is a cancer survivor and gynecologist who practices in West Pal Beach. Have a question? Go to http://www.cancersensibiltyfoundation.org/ or PalmBeachPost.com/health (click on the 'ask a question' link). Any questions submitted to Dr. Bone will be considered for her column. You may also visit http://www.cancershopusa.com/
The courage to put pessimism, hopelessness to rest.
The courage to wake up each day, and try to wear a smile
The courage that inspires you fo go that extra mile
The courage to come in that day, when you would rather call it quits
CT PELVIS W/O CONTRAST
June 27, 2012
CLINICAL STATEMENT: Colon Cancer
TECHNIQUE: Multislice helical sections were obtained from the iliac crests tot eh public symphysis after oral contrast administration.
RADIATION DOSE (DLP): 509 mGy-cm
COMPARISON: CT of the pelvis dated April 1, 2011
FINDINGS:
PELVIC NODES: no adenopathy
PELVIC ORGANS: unremarkable
PERITONEUM/MESENTERY/BOWEL: Status post sigmoid resection.
BONES/SOFT TISSUES: Small punctate sclerotic lesion in the left acetabulum is stable and probably a bone island.
OTHER: NONE
IMPRESSION:
1. Since April 1, 2011 no findings to suggest metastatic disease in the pelvis
============
am I naive? and in denial? do I not want to see what Dr. Kemeny saw??? where does it state two new lesions in my lungs????
----------
CLINICAL STATEMENT: Colon Cancer
TECHNIQUE: Multislice helical sections were obtained from the iliac crests tot eh public symphysis after oral contrast administration.
RADIATION DOSE (DLP): 509 mGy-cm
COMPARISON: CT of the pelvis dated April 1, 2011
FINDINGS:
PELVIC NODES: no adenopathy
PELVIC ORGANS: unremarkable
PERITONEUM/MESENTERY/BOWEL: Status post sigmoid resection.
BONES/SOFT TISSUES: Small punctate sclerotic lesion in the left acetabulum is stable and probably a bone island.
OTHER: NONE
IMPRESSION:
1. Since April 1, 2011 no findings to suggest metastatic disease in the pelvis
============
am I naive? and in denial? do I not want to see what Dr. Kemeny saw??? where does it state two new lesions in my lungs????
----------
MR LIVER W/WO CONTRAST
June 27, 2012 MRI of abdomen
CLINICAL STATEMENT: Colon cancer
TECHNIQUE: Axial in- and out-of-phase T1-weighted; axial fat-saturated T2- weighted: coronal single-shot fast spin-echo T2-weighted; and dynamic Gadolinium-enhanced axial T1-weighted images were acquired.
COMPARISON: May 25, 2012
FINDINGS:
HEPATOBILIARY: Diffuse fatty liver. Stable 1.4 cm hemagioma in segment 7 and 1.1 cm hemagioma in segment 2 (since July 2011). Decreased size of ablation defect in segment 7 and associated linear ablation tract. Increased segment 4A liver metastasis measuring 1.0 x 1.0 cm, previously 0.8 x .05 cm. Increase in marginal recurrence along a segment 5/6 surgical margin, measuring 1.8 x 1.4 cm, previously 1.3 x 1.1 cm. No biliary dilatation. Conventional hepatic arterial anatomy.
SPLEEN: Unremarkable
PANCREAS: Unremarkable
ADRENAL GLANDS: Unremarkable
KIDNEYS: Bilateral renal cysts, including a right renal hemorrhagic/proteinaceous cyst. No hydronephrosis.
ABDOMINOPELIVIC NODES: No adenopathy
BONES/SOFT TISSUES: Unremarkable
OTHER: None
IMPRESSION:
1. Since May 25, 2012, increase in size of segment 4A and segment 6 liver metastases.
2. Conventional hepatic arterial anatomy.
==============================
so where does the two lesions show on the lungs????
=================================
CLINICAL STATEMENT: Colon cancer
TECHNIQUE: Axial in- and out-of-phase T1-weighted; axial fat-saturated T2- weighted: coronal single-shot fast spin-echo T2-weighted; and dynamic Gadolinium-enhanced axial T1-weighted images were acquired.
COMPARISON: May 25, 2012
FINDINGS:
HEPATOBILIARY: Diffuse fatty liver. Stable 1.4 cm hemagioma in segment 7 and 1.1 cm hemagioma in segment 2 (since July 2011). Decreased size of ablation defect in segment 7 and associated linear ablation tract. Increased segment 4A liver metastasis measuring 1.0 x 1.0 cm, previously 0.8 x .05 cm. Increase in marginal recurrence along a segment 5/6 surgical margin, measuring 1.8 x 1.4 cm, previously 1.3 x 1.1 cm. No biliary dilatation. Conventional hepatic arterial anatomy.
SPLEEN: Unremarkable
PANCREAS: Unremarkable
ADRENAL GLANDS: Unremarkable
KIDNEYS: Bilateral renal cysts, including a right renal hemorrhagic/proteinaceous cyst. No hydronephrosis.
ABDOMINOPELIVIC NODES: No adenopathy
BONES/SOFT TISSUES: Unremarkable
OTHER: None
IMPRESSION:
1. Since May 25, 2012, increase in size of segment 4A and segment 6 liver metastases.
2. Conventional hepatic arterial anatomy.
==============================
so where does the two lesions show on the lungs????
=================================
Tuesday, July 3, 2012
I believe in miracles....miracles happen each and every day! I wake up, I enjoy feeding our pets, emptying the dishwasher and even washing dishes that didn't fit in it., doing the laundry...I enjoy seeing and talking with people, even emailing or messaging them on fb. This is my miracle that happens every day! Waking up and enjoying this day!
I also believe God has given me this journey. Although I did visualize as a long road with a few pot holes along the way....but now I feel it as a roller coaster! The ups and downs the sideways and even going around! And oh how I hate roller coasters!!!! It's even like playing poker....seems I never win!!!
on that note....Paul, Charlie and I went to see Dr. Kemeny at Sloan Kettering. We were to discuss the hepatic arterial pump and all that goes along with it. My appointment was for 2:30...but you all know how appointments go - more so for me - you play the waiting game.....Paul was lucky enough to have a casting call in Midtown at 4 pm....Charlie and I went into the office about 3:30 and waited some more. A nurse practitioner spoke with us and asked a million questions, then a young woman came in with the pump so we could see it and hold it....It is quite large! Then Dr. Kemeny came in....she began discussing this pump then said that when she read the scan results (not sure which one = CT or MRI) she noticed two (2) very tiny lesions which are brand new = in my lungs! One on each of them....okay, I'm human....I cried! Poor Paul was with us - because it was now about 5:30....She also highly suggested that along with this pump - chemo should be administered! I wasn't ready for that one...then she gave me the news on these new lesions....So...now I have to go to have this port put in....I had/have a choice of either as outpatient in Sloan or back to Newton by Dr. O'Brien who put it in originally....you all know me - I opt for Newton....so I have a date of either Monday, July 9 or Tuesday the 10th - they will get back to me. I need this before the 15th as I had all the pre-admission tests done in NY that are only good up to 30 days.... I have a call into Dr. May to find out if she spoke with Dr. Kemeny on what chemo's to use. Dr. K. suggested that I use the Panatubmab (the original one I had as a clinical study drug) and the 5 FU = the bag that I would carry for 2 days and another drug.... I'm so excited: NOT...I will get alligator skin, finger cuts, mouth sores, facial hair, darker eyebrows, longer eyelashes, a little hair loss, but no finger/feet tingling......I told Dr. K. the reason that I didn't want to ever do chemo again because of the last two cycles...she found out that it was the most aggressive approach and if it were to be used again, it would be a much lower dosage so my body could handle the side effects. I can still do the chemo in Sparta.
Right now = no hepatic arterial pump will be 'installed'....if I need chemo for these two new lesions than why bother with the pump as the chemo will also get the two lesions in my liver (which have increased in size from last month -- not alot -- but they still got bigger). I will post my scan results in another blog. They (Sloan) uses a little different language as Sparta...which is a bit harder to understand.
We left the city about 6 and decided to meet Nicholas at a restaurant in Dover (his choice) to celebrate his 28th birthday!!! Sam joined us (as she had to work until 4 pm), and Bre joined us as well. It was a great and happy time!!! Paul had to watch what he ate due to his 'new' food allergies and we all shared two little dessert cakes.
I was telling Paul that I feel really bad for him...he is my son - I am his mother...for him to have to hear all this 'bad' news each and every time...I know it is so stressful to him. Charlie was a bit upset that I felt worse for Paul and not him...I know the love for your very own child is a little different than the love for your spouse....It seems to be equal but I still think it's a little different. The worst part is that they say that they feel worse for me....
When we got home I received a note card from one of my 'old secretarial friends' that lives down in Florida (we've kept in touch). This note came at the perfect time!!! She enclosed a poem that a oncologist in Fl. wrote to his patients 10 years ago. It was printed again in their local newspaper by a cancer survivor gynecologist. I will post that poem separately.
I'm human, first I cry, then wonder where God is...then I get this note in the mail and this morning I read an email from my 'old time school mate' that was a prayer...timing couldn't have been better!!!!
I have one other thing that urks me....If I have to wait in the waiting room for over an hour to see and talk to a doctor...why on earth - can't they call you into their office and let you know what the test results are - good or bad news....put you in another room --- so you can cry or just let what they said - sink in! Rather than you waiting all that time to see you and then they say this to you - how do they expect you to be logical at that point??? My first response was -- I'm done! I don't want to do anything!!! Of course after 'letting go' a few minutes later....I was ready to fight!!! and do whatever is needed.
The doctor did say she sees this very hopeful...as my CEA is 10 and when I began going to Sloan last year for the first liver resection my number was up in the 200's...so she really thinks that I can do this with chemo and then have the pump 'installed'....
I also believe God has given me this journey. Although I did visualize as a long road with a few pot holes along the way....but now I feel it as a roller coaster! The ups and downs the sideways and even going around! And oh how I hate roller coasters!!!! It's even like playing poker....seems I never win!!!
on that note....Paul, Charlie and I went to see Dr. Kemeny at Sloan Kettering. We were to discuss the hepatic arterial pump and all that goes along with it. My appointment was for 2:30...but you all know how appointments go - more so for me - you play the waiting game.....Paul was lucky enough to have a casting call in Midtown at 4 pm....Charlie and I went into the office about 3:30 and waited some more. A nurse practitioner spoke with us and asked a million questions, then a young woman came in with the pump so we could see it and hold it....It is quite large! Then Dr. Kemeny came in....she began discussing this pump then said that when she read the scan results (not sure which one = CT or MRI) she noticed two (2) very tiny lesions which are brand new = in my lungs! One on each of them....okay, I'm human....I cried! Poor Paul was with us - because it was now about 5:30....She also highly suggested that along with this pump - chemo should be administered! I wasn't ready for that one...then she gave me the news on these new lesions....So...now I have to go to have this port put in....I had/have a choice of either as outpatient in Sloan or back to Newton by Dr. O'Brien who put it in originally....you all know me - I opt for Newton....so I have a date of either Monday, July 9 or Tuesday the 10th - they will get back to me. I need this before the 15th as I had all the pre-admission tests done in NY that are only good up to 30 days.... I have a call into Dr. May to find out if she spoke with Dr. Kemeny on what chemo's to use. Dr. K. suggested that I use the Panatubmab (the original one I had as a clinical study drug) and the 5 FU = the bag that I would carry for 2 days and another drug.... I'm so excited: NOT...I will get alligator skin, finger cuts, mouth sores, facial hair, darker eyebrows, longer eyelashes, a little hair loss, but no finger/feet tingling......I told Dr. K. the reason that I didn't want to ever do chemo again because of the last two cycles...she found out that it was the most aggressive approach and if it were to be used again, it would be a much lower dosage so my body could handle the side effects. I can still do the chemo in Sparta.
Right now = no hepatic arterial pump will be 'installed'....if I need chemo for these two new lesions than why bother with the pump as the chemo will also get the two lesions in my liver (which have increased in size from last month -- not alot -- but they still got bigger). I will post my scan results in another blog. They (Sloan) uses a little different language as Sparta...which is a bit harder to understand.
We left the city about 6 and decided to meet Nicholas at a restaurant in Dover (his choice) to celebrate his 28th birthday!!! Sam joined us (as she had to work until 4 pm), and Bre joined us as well. It was a great and happy time!!! Paul had to watch what he ate due to his 'new' food allergies and we all shared two little dessert cakes.
I was telling Paul that I feel really bad for him...he is my son - I am his mother...for him to have to hear all this 'bad' news each and every time...I know it is so stressful to him. Charlie was a bit upset that I felt worse for Paul and not him...I know the love for your very own child is a little different than the love for your spouse....It seems to be equal but I still think it's a little different. The worst part is that they say that they feel worse for me....
When we got home I received a note card from one of my 'old secretarial friends' that lives down in Florida (we've kept in touch). This note came at the perfect time!!! She enclosed a poem that a oncologist in Fl. wrote to his patients 10 years ago. It was printed again in their local newspaper by a cancer survivor gynecologist. I will post that poem separately.
I'm human, first I cry, then wonder where God is...then I get this note in the mail and this morning I read an email from my 'old time school mate' that was a prayer...timing couldn't have been better!!!!
I have one other thing that urks me....If I have to wait in the waiting room for over an hour to see and talk to a doctor...why on earth - can't they call you into their office and let you know what the test results are - good or bad news....put you in another room --- so you can cry or just let what they said - sink in! Rather than you waiting all that time to see you and then they say this to you - how do they expect you to be logical at that point??? My first response was -- I'm done! I don't want to do anything!!! Of course after 'letting go' a few minutes later....I was ready to fight!!! and do whatever is needed.
The doctor did say she sees this very hopeful...as my CEA is 10 and when I began going to Sloan last year for the first liver resection my number was up in the 200's...so she really thinks that I can do this with chemo and then have the pump 'installed'....
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