Wednesday, July 28, 2010
CEA level from 07/19/10
So I finally found out my CEA level from my last blood draw of 07/19/10 which is 176.6 up from 05/24/10: 138.5
Monday, July 26, 2010
Something Cool ~ A celebrity encounter
Okay so today Tom and I left the house to drop off a couple prescriptions for me, eat at IHOP, go to the library, come back and pick up prescriptions, grab a few groceries and come home.
As we were leaving IHOP Tom pointed to a man by the counter and whispered "Isn't he the guy from Thir13en Ghosts?" I looked and only saw a profile and said "naw can't be him" and went outside to smoke while Tom paid the bill, well Tom came out and right after him comes the guy Tom pointed out with another man.
Big mouth me, I said *Excuse me Sir, but has anyone ever told you that you look like F. Murray Abraham?" He got a little modest smile and said "Yes". My eyes widened as I DID recognize him and I said "Oh my lord, you are him aren't you?" and he smiled more and said again very modestly *Yes I am* and I simply said *I love your movies and thank you* He was gracious and then his companion and he went one way and Tom and I went our way.
I am not one to intrude to get autographs or to ask to take a photograph with someone but that made my day to meet a celebrity as modest and nice as he was and for those who have no clue whom F. Murray Abraham is he starred in Thir13en Ghosts, Finding Forrester, Last Action Hero and Amadeus among many other films and television shows.
As we were leaving IHOP Tom pointed to a man by the counter and whispered "Isn't he the guy from Thir13en Ghosts?" I looked and only saw a profile and said "naw can't be him" and went outside to smoke while Tom paid the bill, well Tom came out and right after him comes the guy Tom pointed out with another man.
Big mouth me, I said *Excuse me Sir, but has anyone ever told you that you look like F. Murray Abraham?" He got a little modest smile and said "Yes". My eyes widened as I DID recognize him and I said "Oh my lord, you are him aren't you?" and he smiled more and said again very modestly *Yes I am* and I simply said *I love your movies and thank you* He was gracious and then his companion and he went one way and Tom and I went our way.
I am not one to intrude to get autographs or to ask to take a photograph with someone but that made my day to meet a celebrity as modest and nice as he was and for those who have no clue whom F. Murray Abraham is he starred in Thir13en Ghosts, Finding Forrester, Last Action Hero and Amadeus among many other films and television shows.
Sunday, July 25, 2010
A new phase
I posted this to the http://www.cancerforums.net/forums/21-Colon-Cancer-and-Rectal-Cancer-Forum colon cancer forum I am part of:
I just wanted to say I am no hero, I am no strong person and although I will be here updating and letting you all know how things are going, asking questions and giving help and research as I can I have thought it over through the night and I simply cannot deal with the chemotherapy anymore. It has come down to a question of quality of life and I am unwilling to compromise mine any longer. I hope I am not judged as a quitter for I am not quitting life, just the chemotherapy. I will not as I have said before pass this week, this month, next month, six months or maybe a year or even two years from now but it will happen, with or without the chemotherapy.
When Tom and I walked into the Oncologists office in September of 09, I had been diagnosed for a year and two months and had not had any treatment and was only going to get a "lets see where things stand and how much longer I have" opinion. We did not know at that time about the KRAS mutation and Tom asked me to "try" the chemotherapy and that I could quit whenever I wanted.
I tried it, at first not so bad, then in the middle a little worse, now really bad and although yes I can get on the computer and type and also do a few other things it is not without consequences afterwards. I am myelf trying to come to terms with my decision and trying to face my own mortality as that in the end is what it will come down to, but when I look at the person I am now both physically and emotionally compared to the person before I started doing chemotherapy I want these drugs out of my system, I want the port and catheter out of my neck and chest, I want to in six weeks to be able to schedule surgery to get this hernia taken care of, in short I want to spend whatever time I have left with Tom to be the best time it can be until by the nature of the disease the end comes (which I pray to God is not a lingering painful end, I don't think it will be as it seems my liver is the main concern. (and no this really is not about the housekeeping (grin)
So, I love you all, I am not leaving you unless you feel I do not belong here anymore, and I will do my best to help each and everyone of you with research, with words, with research, with care and empathy and with thought and prayer.
I just wanted to say I am no hero, I am no strong person and although I will be here updating and letting you all know how things are going, asking questions and giving help and research as I can I have thought it over through the night and I simply cannot deal with the chemotherapy anymore. It has come down to a question of quality of life and I am unwilling to compromise mine any longer. I hope I am not judged as a quitter for I am not quitting life, just the chemotherapy. I will not as I have said before pass this week, this month, next month, six months or maybe a year or even two years from now but it will happen, with or without the chemotherapy.
When Tom and I walked into the Oncologists office in September of 09, I had been diagnosed for a year and two months and had not had any treatment and was only going to get a "lets see where things stand and how much longer I have" opinion. We did not know at that time about the KRAS mutation and Tom asked me to "try" the chemotherapy and that I could quit whenever I wanted.
I tried it, at first not so bad, then in the middle a little worse, now really bad and although yes I can get on the computer and type and also do a few other things it is not without consequences afterwards. I am myelf trying to come to terms with my decision and trying to face my own mortality as that in the end is what it will come down to, but when I look at the person I am now both physically and emotionally compared to the person before I started doing chemotherapy I want these drugs out of my system, I want the port and catheter out of my neck and chest, I want to in six weeks to be able to schedule surgery to get this hernia taken care of, in short I want to spend whatever time I have left with Tom to be the best time it can be until by the nature of the disease the end comes (which I pray to God is not a lingering painful end, I don't think it will be as it seems my liver is the main concern. (and no this really is not about the housekeeping (grin)
So, I love you all, I am not leaving you unless you feel I do not belong here anymore, and I will do my best to help each and everyone of you with research, with words, with research, with care and empathy and with thought and prayer.
Saturday, July 24, 2010
Quitting chemotherapy
I have decided to quit chemotherapy. After yesterday when I was wrapped up in the blankets for the better part of the day with the windows closed in 80+ degree weather and the fan off and then having fever (although I am not sure as the thermometer does not work) and opening all the windows, then closing them, turning on the air conditioner etc, running cold water over me, and being in pain no matter how many pain pills I took. Layiing in bed crying for my mother, for god, for anyone to please help me, I have come to the decision I cannot go through this anymore. I want to get well as far as the chemotherapy side effects, I then want to get my hernia worked on so I don't feel like a side show freak and I want to get my hair back and my weight back under control so when I do pass on I don't pass on feeling like my mother must have felt, feeling old and sick and no one understands and helpless.
I want to get back to being able to take care of our condo myself instead of flying off the handle when something needs to get done or to have a stranger come in twice a month to clean, I mean hell I feel useless enough. And the fact that Tom loves me enough to hire someone to do so is great although the "I want to spend more time with you" is basically an excuse to lay around the house and not do anything and leave me to make the bed which is hard to make as big as it is and with the sheets that don't fit (If you've even been sick and laid in a bed where the sheets, comforter and mattress cover gradually make their way to the end of the bed you know it is not conducive to comfort and feeling good), and leave me to grab all the trash and pile it in front of him BEFORE he can escape to work as that is his job to take the trash out and I cannot walk around the house without flip flops on because of the stupid cat litter that digs into my feet at each step.
Day by day I watch the house becoming scummier and scummier, yesterday I bent over from the toilet where I was stuck with diarrhea and wiped a spot on the bathroom floor with a wet wipe, it came up black. Yes today Tom helped me clean the stove and I am so grateful for that but I just have reached the breaking point. With feeling things out of my control, with the Dr's not giving a damn but just telling me go through the chemo it will be okay and not answering my specific questions of how long I might have etc, etc. and then the pain and discomfort, yes I am a wuss, yes I cannot take pain and discomfort and I am sorry I have given it my best try but I can't do it anymore, I just can't so Monday I am calling my Oncologist's PA, Kristin and asking that when I come in on the 2nd of August that we discuss how long I will have, how often they will follow me, when hospice should come into the picture and what to expect. If she won't discuss those things or my Oncologist steps in I will just stop it all and say "see ya when I need ya" to them.
I am just tired.
I want to get back to being able to take care of our condo myself instead of flying off the handle when something needs to get done or to have a stranger come in twice a month to clean, I mean hell I feel useless enough. And the fact that Tom loves me enough to hire someone to do so is great although the "I want to spend more time with you" is basically an excuse to lay around the house and not do anything and leave me to make the bed which is hard to make as big as it is and with the sheets that don't fit (If you've even been sick and laid in a bed where the sheets, comforter and mattress cover gradually make their way to the end of the bed you know it is not conducive to comfort and feeling good), and leave me to grab all the trash and pile it in front of him BEFORE he can escape to work as that is his job to take the trash out and I cannot walk around the house without flip flops on because of the stupid cat litter that digs into my feet at each step.
Day by day I watch the house becoming scummier and scummier, yesterday I bent over from the toilet where I was stuck with diarrhea and wiped a spot on the bathroom floor with a wet wipe, it came up black. Yes today Tom helped me clean the stove and I am so grateful for that but I just have reached the breaking point. With feeling things out of my control, with the Dr's not giving a damn but just telling me go through the chemo it will be okay and not answering my specific questions of how long I might have etc, etc. and then the pain and discomfort, yes I am a wuss, yes I cannot take pain and discomfort and I am sorry I have given it my best try but I can't do it anymore, I just can't so Monday I am calling my Oncologist's PA, Kristin and asking that when I come in on the 2nd of August that we discuss how long I will have, how often they will follow me, when hospice should come into the picture and what to expect. If she won't discuss those things or my Oncologist steps in I will just stop it all and say "see ya when I need ya" to them.
I am just tired.
Friday, July 23, 2010
Two year survival stage reached
It was two years ago today they found the tumor in my colon. Today is a day of reflection for me, how life can change so fast with so little warning and how as human beings we go through so many things we never would have thought we could. Thank you all for being here for me, thank you Tom for coming into my life and loving me and thank you God for allowing me to see this two year mark.
Thursday, July 22, 2010
A quick update
Just wanted to add that the pain got pretty bad so I did put in a call to my Oncologists. I spoke to an assistant, she says that it would be very abnormal if the pain was coming from the lesions in my lungs at this time. She suggested I might want to take a trip to the ER as it could be a pulmonary embolism caused by the seven hour ride to AZ and back over our vacation and it also might be pleurisy. I am going to wait a few days and see what comes of it, it has tapered off for right now but will try to be back tomorrow to do some research on what you were saying swisecar and also to help others. Goodnight and sweet dreams as I pray for everyone on the forum.
A thanks, words and a question
Thank you all for such wonderful ideas, thoughts and just plain support. Sheila, your words along with everyone else's give me the courage to go on along with the fact I have not had an easy life (my fault) before I met Tom and everyone has always referred to me as a "survivor" truth be told, I hate that word as it gives me an illusion of "strength" that I really don't have.
Swisecar I will do research on the compound when I can and Bruce ((((((((((((hugs)))))))))))) Thank you for your care and your words. I am glad to hear about the Avastin although not a big fan of it as it has given me high blood pressure I wonder why it was pulled for breast cancer? Going to do a little research on that also when I can.
I went and had my pack undone yesterday and I almost threw up the minute they pushed the flushes in (Saline and Heparin) I was so sick afterwards I just wanted to lay down and die and not move, although my side effects of the chemo itself are not all that bad right at this time but I am not letting my guard down.
Tom has asked me when I feel a bit better (as in can sit up for longer periods of time, will explain in a minute) to start checking Craigslist and other places to have someone come in twice a month for a good cleaning of condo. I feel ambivalent about this; on one hand the house will get cleaned better than I can now and on the other hand I feel like a failure for not being able to do it myself, and yes I know I am not a failure but it hurts me that I cannot do things for Tom and I that need to be done.
So I have a question of those who have mets to lungs and liver, I am not sure where it is coming from (am a bit of a dunderhead about anatomy) but I feel like a horse has kicked me in the lower ribs. I am having trouble drawing breath and have to take vicodin to sit up and be on the computer for any amount of time or such things. My first Oncologist back when I was diagnosed had explained to me what happens when the cancer gets to certain points with certain organs and now I am worrying that perhaps my lungs are being more affected than I or the Oncologist thinks. When I call next Thursday to get my CEA results I will also pose that question but for now am not sure it qualifies as a call to my Oncologist or rather his PA. Just wondering if any body else has this problem and what if anything helps?
So going to lay back down again and relax for a time, am on to the kick of "Desperate Housewives" and these peoples trouble really help me ignore my own for a time (Laughing hard as this show is really something).
Take care and love to all and you are all in my thoughts and prayers.
Marsha
Swisecar I will do research on the compound when I can and Bruce ((((((((((((hugs)))))))))))) Thank you for your care and your words. I am glad to hear about the Avastin although not a big fan of it as it has given me high blood pressure I wonder why it was pulled for breast cancer? Going to do a little research on that also when I can.
I went and had my pack undone yesterday and I almost threw up the minute they pushed the flushes in (Saline and Heparin) I was so sick afterwards I just wanted to lay down and die and not move, although my side effects of the chemo itself are not all that bad right at this time but I am not letting my guard down.
Tom has asked me when I feel a bit better (as in can sit up for longer periods of time, will explain in a minute) to start checking Craigslist and other places to have someone come in twice a month for a good cleaning of condo. I feel ambivalent about this; on one hand the house will get cleaned better than I can now and on the other hand I feel like a failure for not being able to do it myself, and yes I know I am not a failure but it hurts me that I cannot do things for Tom and I that need to be done.
So I have a question of those who have mets to lungs and liver, I am not sure where it is coming from (am a bit of a dunderhead about anatomy) but I feel like a horse has kicked me in the lower ribs. I am having trouble drawing breath and have to take vicodin to sit up and be on the computer for any amount of time or such things. My first Oncologist back when I was diagnosed had explained to me what happens when the cancer gets to certain points with certain organs and now I am worrying that perhaps my lungs are being more affected than I or the Oncologist thinks. When I call next Thursday to get my CEA results I will also pose that question but for now am not sure it qualifies as a call to my Oncologist or rather his PA. Just wondering if any body else has this problem and what if anything helps?
So going to lay back down again and relax for a time, am on to the kick of "Desperate Housewives" and these peoples trouble really help me ignore my own for a time (Laughing hard as this show is really something).
Take care and love to all and you are all in my thoughts and prayers.
Marsha
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