Monday, December 28, 2009
I have a cold!
I have a fricking cold and am miserable!!!!!!! So I guess I call the oncologist today and reset my treatement for today as I don't want to get anyone else sick let alone go in and go through the Avastin treatment feeling like I feel today. :(
Thursday, December 24, 2009
Happy Holidays
Merry Christmas and Happy Holidays, my wish for all is that for at least a few days everyone is free of pain and worry and given this time to be with loved ones and friends.
For those who have lost those dear to them may this time be one of healing and rememberance of those who have passed with fond and wonderful memories that bring a smile to your face (((((((((hugs)))))))))))
For those who have lost those dear to them may this time be one of healing and rememberance of those who have passed with fond and wonderful memories that bring a smile to your face (((((((((hugs)))))))))))
Tuesday, December 22, 2009
Back from my "talk" appointment with my oncologist
Back from the oncologist
I wimped out, between him and my boyfriends "hurrahs" for him I got tired of fighting and said "fine, I'll see you Monday for my avastin treatment"
He again asserted he could "cure" me, do you want to know what his definition of cure is? and I quote "keeping you alive long enough for something else to kill you"
So if I go out tomorrow and get hit by a bus he will consider me "cured" because cancer did not kill me.
If they have to take me off avastin for surgery and I have a heart attack I will be "cured" as the cancer did not kill me.
This is not MY definition of cured. but that does not matter because his attitude (what he shows me) is "I am a great and godlike physician and I know more than you do so no matter how much research you have done or people you have talked to on the web or (this) forum(s), sit down and shut up and do as I say because I know it all)
He bullied his way thorugh the conversation I rarely got a chance to speak and when I did he had an answer for everything
"Oh Medicare will pay for at least part of the clinical trial" (I had already told him I called them and they will pay for part yes but not the $15,000 experimental drug "Oh you talked to someone that does not know what they were talking about"
"Oh Tricare for life will pay for at least part of the clincal trial" I just called them, same answer as Medicare.
"Well the woman you talked to at the clinica trial is only the secretary she does not know what she is talking about "I'LL" talk to the Dr, and maybe as a favor they will get you in without the $15,000"
When I told him I had looked up avastin and studies have shown by itself as a maintenence drug it does not do a damn thing he said "print that out and show it to me on Monday because that's not what I have seen"
When I asked him why he took me off the chemotherapy and put me on avastin at the 3 month mark instead of six months evaluation what to do further he said and I again quote "I changed my mind"
And for the kicker a year and five months after I was diagnosed SOMEONE (my oncologist) finally let it slip;
I have the KRAS mutation meaning that most of the second or third line chemotherapies are out for me because like erbutix they won't do anything because of the mutation, would have kind of been nice to know this say even WHEN I FIRST STARTED SEEING "THIS" oncologist.
and to top it off when I asked for my last CEA levels he did not have them because although for three months regular as clockword he ordered them every other Monday when my blood work was drawn and before I saw him or his PA and then had treatment it was standard procedure to have the CEA levels also done from the bloodwork and yet this past chemotherapy (before they put me on avastin alone) or the avastin alone treatment last Monday? "I didn't order it"
DUCK ME and I mean with an F not a D.
I am so pissed right now and mostly at myself for allowing myself to be railroaded and because I am simply too tired to fight this man anymore and to tired to run around looking for other Oncologists, I give up, he can do what he wants and I accept it.
I am going to take two valium, smoke a couple cigarettes and go to sleep before I start crying.
Thank you all for thinking of me and praying for me and your concern. Will update after my treatment Monday. Oh and one more thing, the urologist his PA had me schedule an appontment with for next tuesday? He cancelled that appointment and made me one for Jan 27 for a consult with a urologist "he" likes.
okay on the verge of tears and so tired so over and out for now.
I wimped out, between him and my boyfriends "hurrahs" for him I got tired of fighting and said "fine, I'll see you Monday for my avastin treatment"
He again asserted he could "cure" me, do you want to know what his definition of cure is? and I quote "keeping you alive long enough for something else to kill you"
So if I go out tomorrow and get hit by a bus he will consider me "cured" because cancer did not kill me.
If they have to take me off avastin for surgery and I have a heart attack I will be "cured" as the cancer did not kill me.
This is not MY definition of cured. but that does not matter because his attitude (what he shows me) is "I am a great and godlike physician and I know more than you do so no matter how much research you have done or people you have talked to on the web or (this) forum(s), sit down and shut up and do as I say because I know it all)
He bullied his way thorugh the conversation I rarely got a chance to speak and when I did he had an answer for everything
"Oh Medicare will pay for at least part of the clinical trial" (I had already told him I called them and they will pay for part yes but not the $15,000 experimental drug "Oh you talked to someone that does not know what they were talking about"
"Oh Tricare for life will pay for at least part of the clincal trial" I just called them, same answer as Medicare.
"Well the woman you talked to at the clinica trial is only the secretary she does not know what she is talking about "I'LL" talk to the Dr, and maybe as a favor they will get you in without the $15,000"
When I told him I had looked up avastin and studies have shown by itself as a maintenence drug it does not do a damn thing he said "print that out and show it to me on Monday because that's not what I have seen"
When I asked him why he took me off the chemotherapy and put me on avastin at the 3 month mark instead of six months evaluation what to do further he said and I again quote "I changed my mind"
And for the kicker a year and five months after I was diagnosed SOMEONE (my oncologist) finally let it slip;
I have the KRAS mutation meaning that most of the second or third line chemotherapies are out for me because like erbutix they won't do anything because of the mutation, would have kind of been nice to know this say even WHEN I FIRST STARTED SEEING "THIS" oncologist.
and to top it off when I asked for my last CEA levels he did not have them because although for three months regular as clockword he ordered them every other Monday when my blood work was drawn and before I saw him or his PA and then had treatment it was standard procedure to have the CEA levels also done from the bloodwork and yet this past chemotherapy (before they put me on avastin alone) or the avastin alone treatment last Monday? "I didn't order it"
DUCK ME and I mean with an F not a D.
I am so pissed right now and mostly at myself for allowing myself to be railroaded and because I am simply too tired to fight this man anymore and to tired to run around looking for other Oncologists, I give up, he can do what he wants and I accept it.
I am going to take two valium, smoke a couple cigarettes and go to sleep before I start crying.
Thank you all for thinking of me and praying for me and your concern. Will update after my treatment Monday. Oh and one more thing, the urologist his PA had me schedule an appontment with for next tuesday? He cancelled that appointment and made me one for Jan 27 for a consult with a urologist "he" likes.
okay on the verge of tears and so tired so over and out for now.
Friday, December 18, 2009
Immunology therapy?
Okay I am back here to ya'll with a question.
My Oncologist just called me and threw me for a loop.
Monday his assistant will be calling me to make an appointment for me to go to another facility to talk to them about immunology therapy.
"If" I am a candidate (is this a clinical trial?) and "if" I decide to do this he will no longer be treating me and I will be taken off the Avastin.
From what he said the whole 3.4 minutes he was on the phone with me and from what I got out of what he said is, if I am a candidate and if I agree to go through this treatment, they will take a part of a cancer cell from me (like a biopsy of the cell maybe?) and make a vaccine which will then be injected into me.
I have no knowledge of this stuff and called his PA, am waiting for her to call me back so can get a better explanation.
I am scared, first he changed the "game plan" of six months of chemotherapy (Folfox-6) to after three months of chemotherapy to only Avastin, now he wants me to go do this "immunology" stuff and take me off the Avastin.
Help please if anyone has any???? I am scared, he says and my boyfriend says this is all good things cause the PET scan showed such good results but I am still scared, why all the changes????
I don't know if this is the site or not but this is information I have found so far and seems like it might be although the oncologist did not mention the cryoblation.
http://www.immunocare.net/
Edit:
I just heard back from my Oncologist's PA. She knows nothing about this except the Oncologist has one other patient a male in this clinical trial and he seems to be doing well (whatever that means)
She in confidence said to me if I did not want to go through with the clinical trial her personal advise would be to get a second opionion from another Oncologist not associated with where my Oncologist is, perhaps UCSD medical center.
I am going to read the whole website of the immunocare.net (which is where the clinical trial is) and try to find a contact number to call and get more information from them.
I always said I was not a hero, or the type of person to be a Guinea Pig with a clinical trial that was not proven and side effects were not all known, now I don't know what to do?
I guess just research then go to see them after I get an appointment set through my Oncologists assistant next Monday, and who knows maybe I won't even qualify?
I just have lost confidence in my Oncologist as I feel he is not being truthful, he lied in the beginning (I can cure you), and has changed the game plan three times now without really giving me a reason why, what do you all think?
UPDATE:
I am so pissed right now I could chew nails.
So this morning I wake up and first thing I do is call Medicare (I have Medicare/Medical and TriCare for Life) (BTW if anyone needs to call Medicare they are open 24/7)
So they pay for the usual costs with clinical trials but not for the experimental drugs itself, Tricare I don't know about as they are not open until Monday. So I called on an off chance the clinical trial, I talked to the woman I talked to yesterday. THEY DON'T EVEN ACCEPT INSURANCE! They want $15,000 UPFRONT for the drug and it can go to $20,000.
I told her take my name off the list as I am on disability and have no way to pay for this (I thank God for my Medicare/Medical and Tricare for Life as without them I would be screwed)
So then I got mad and I called my Oncologist's exchange, a different Oncologist called me back, told me of course I know with my type and degree of Cancer there is no cure (Flashback to my Oncologist first visit and his first words to me "I can cure you" GRRRRRRRRRRRRRRRRR) and proceeded to give me a few reasons why he thought my Oncologist may have thought this clinical trial would be good for me.
I AM LIVID. First and foremost he knows I am on disability, he knows my insurance, he knows I DON'T have $15,000 and even if I had it I would not spend it on a phase I clinical trial that is at this point only checking for toxicity in patients (side effects). What the hell was this man thinking?
Or was he not thinking? Not thinking of me as a human being, as an individual, as someone who went through my first bout of chemo relatively okay and was looking forward to the next three months to get this chit down to where it could be ablated or surgery or something, a person who had hope of being given a bit more time when I still know the reality I will not beat this, but I had hope dammit! And he destroyed me yesterday, all day I cried, I worried, I fretted, I did research and for what? For something I never even had a chance of being included in even if I had decided I wanted to?
I found out he will be in the office this coming week and Monday am calling and demanding the soonest appointment, then I want to talk to him face to face, ask him WHY he thought this clinical trial would be the best for me and why with my financial condition I would even qualify.
Then I want to find out what he plans to do now with me.
Just for my own curiosity because this weekend? This weekend I start researching other Oncologists, not for a "second opinion" but because I don't see a shred of humanity in this Dr and feel I will be better off with another.
So, thank you for letting me get that off my chest, I took a valium and will be okay, forward on I march I say!
Sincerely,
Marsha
My Oncologist just called me and threw me for a loop.
Monday his assistant will be calling me to make an appointment for me to go to another facility to talk to them about immunology therapy.
"If" I am a candidate (is this a clinical trial?) and "if" I decide to do this he will no longer be treating me and I will be taken off the Avastin.
From what he said the whole 3.4 minutes he was on the phone with me and from what I got out of what he said is, if I am a candidate and if I agree to go through this treatment, they will take a part of a cancer cell from me (like a biopsy of the cell maybe?) and make a vaccine which will then be injected into me.
I have no knowledge of this stuff and called his PA, am waiting for her to call me back so can get a better explanation.
I am scared, first he changed the "game plan" of six months of chemotherapy (Folfox-6) to after three months of chemotherapy to only Avastin, now he wants me to go do this "immunology" stuff and take me off the Avastin.
Help please if anyone has any???? I am scared, he says and my boyfriend says this is all good things cause the PET scan showed such good results but I am still scared, why all the changes????
I don't know if this is the site or not but this is information I have found so far and seems like it might be although the oncologist did not mention the cryoblation.
http://www.immunocare.net/
Edit:
I just heard back from my Oncologist's PA. She knows nothing about this except the Oncologist has one other patient a male in this clinical trial and he seems to be doing well (whatever that means)
She in confidence said to me if I did not want to go through with the clinical trial her personal advise would be to get a second opionion from another Oncologist not associated with where my Oncologist is, perhaps UCSD medical center.
I am going to read the whole website of the immunocare.net (which is where the clinical trial is) and try to find a contact number to call and get more information from them.
I always said I was not a hero, or the type of person to be a Guinea Pig with a clinical trial that was not proven and side effects were not all known, now I don't know what to do?
I guess just research then go to see them after I get an appointment set through my Oncologists assistant next Monday, and who knows maybe I won't even qualify?
I just have lost confidence in my Oncologist as I feel he is not being truthful, he lied in the beginning (I can cure you), and has changed the game plan three times now without really giving me a reason why, what do you all think?
UPDATE:
I am so pissed right now I could chew nails.
So this morning I wake up and first thing I do is call Medicare (I have Medicare/Medical and TriCare for Life) (BTW if anyone needs to call Medicare they are open 24/7)
So they pay for the usual costs with clinical trials but not for the experimental drugs itself, Tricare I don't know about as they are not open until Monday. So I called on an off chance the clinical trial, I talked to the woman I talked to yesterday. THEY DON'T EVEN ACCEPT INSURANCE! They want $15,000 UPFRONT for the drug and it can go to $20,000.
I told her take my name off the list as I am on disability and have no way to pay for this (I thank God for my Medicare/Medical and Tricare for Life as without them I would be screwed)
So then I got mad and I called my Oncologist's exchange, a different Oncologist called me back, told me of course I know with my type and degree of Cancer there is no cure (Flashback to my Oncologist first visit and his first words to me "I can cure you" GRRRRRRRRRRRRRRRRR) and proceeded to give me a few reasons why he thought my Oncologist may have thought this clinical trial would be good for me.
I AM LIVID. First and foremost he knows I am on disability, he knows my insurance, he knows I DON'T have $15,000 and even if I had it I would not spend it on a phase I clinical trial that is at this point only checking for toxicity in patients (side effects). What the hell was this man thinking?
Or was he not thinking? Not thinking of me as a human being, as an individual, as someone who went through my first bout of chemo relatively okay and was looking forward to the next three months to get this chit down to where it could be ablated or surgery or something, a person who had hope of being given a bit more time when I still know the reality I will not beat this, but I had hope dammit! And he destroyed me yesterday, all day I cried, I worried, I fretted, I did research and for what? For something I never even had a chance of being included in even if I had decided I wanted to?
I found out he will be in the office this coming week and Monday am calling and demanding the soonest appointment, then I want to talk to him face to face, ask him WHY he thought this clinical trial would be the best for me and why with my financial condition I would even qualify.
Then I want to find out what he plans to do now with me.
Just for my own curiosity because this weekend? This weekend I start researching other Oncologists, not for a "second opinion" but because I don't see a shred of humanity in this Dr and feel I will be better off with another.
So, thank you for letting me get that off my chest, I took a valium and will be okay, forward on I march I say!
Sincerely,
Marsha
Wednesday, December 16, 2009
Bladder problems
Okay my bladder problems are getting worse, the detrol even upped in dose has not helped and I am to the point of wearing poise pads as when I cough, sneeze, laugh etc, whatever is in my bladder comes out.
2004 I had a bladder lift, the Urologist told me at some time I might have to have it done again. Since I have been taken off the chemo and left on just the Avastin I talked to my Oncologist's PA and she referred me to a Urologist, just to have a consultation and see if it is time to have another bladder lift or if it can wait until April when we see the results of my next PET scan.
The Urologist's office called today and I have an appointment with them on December 29th, Tuesday the day after my Avastin treatment, from what we talked about it will be a consultation and then he will consult with my Oncologist or his PA and a decision will be made from there.
I am pretty sure I have to have another bladder lift as the bladder leakage is to the point it was before the last one, the only concern is my cancer and the Avastin I am on. But we will see. Will keep you updated.
So far no problems with the Avastin alone and my Oncologist put me on Carafate for the stomach pains I have sometimes at night. so unless something changes or something comes up will probably update again on the 28th and then the 29th so Happy Holidays everyone!!!!!!!!!!!!!!!!!!!!!!!!!!!
2004 I had a bladder lift, the Urologist told me at some time I might have to have it done again. Since I have been taken off the chemo and left on just the Avastin I talked to my Oncologist's PA and she referred me to a Urologist, just to have a consultation and see if it is time to have another bladder lift or if it can wait until April when we see the results of my next PET scan.
The Urologist's office called today and I have an appointment with them on December 29th, Tuesday the day after my Avastin treatment, from what we talked about it will be a consultation and then he will consult with my Oncologist or his PA and a decision will be made from there.
I am pretty sure I have to have another bladder lift as the bladder leakage is to the point it was before the last one, the only concern is my cancer and the Avastin I am on. But we will see. Will keep you updated.
So far no problems with the Avastin alone and my Oncologist put me on Carafate for the stomach pains I have sometimes at night. so unless something changes or something comes up will probably update again on the 28th and then the 29th so Happy Holidays everyone!!!!!!!!!!!!!!!!!!!!!!!!!!!
Tuesday, December 15, 2009
A Question
Okay I have a question that is worrying the hell out of me and wonder if anyone has heard of this and/or gone through this?
See results of PET scan.
Okay yesterday went in, got blood work drawn, went in to see my Oncologist instead of His PA like I had thought (I don't really trust my Oncologist to tell me the truth, but I like His PA LOL hey this is the man who when I first walked into His office told me he could "CURE" me (yeah right) and then declined to answer when I asked Him if He would do chemotherapy.
So anyways he shocked the living crap out of me! He took me off everything but the Avastin! Is this standard procedure when there are still 6 large mets in my liver and numerous (He still could not tell me how many) shrinking mets in both lungs??? or is this guy using me as a guinea pig as some sort of trial and not telling me?
I mean okay I admit I love the fact that the only real side effects I will have is nosebleeds (have been on Avastin along with the other products since the beginning and have had nosebleeds but not bad), hypertension, yes my blood pressure goes up a bit but not bad so far, peeling skin (have my bag balm (somewhere still haven't found it after the unpacking but am sure it is is in one of my bags), fatigue, have gotten used to that and learned how to deal with it and then the more serious side effects that I read but don't pay attention to unless/until they happen then get on the phone with my PA and start screaming in pain (grins ~ no seriously really I do) and to add to that even with the blood draw, the seeing the Dr, the administration of the premeds and the Avastin I get out of there in under 2 hours instead of 5 and NO pack to wear home.
But in spite of all these "good things" I am seriously concerned about this course of treatment and would love to hear opinions, facts that have happened to any others that were put on Avastin alone and any other help ya'll might have.
Thank you and god bless all.
See results of PET scan.
Okay yesterday went in, got blood work drawn, went in to see my Oncologist instead of His PA like I had thought (I don't really trust my Oncologist to tell me the truth, but I like His PA LOL hey this is the man who when I first walked into His office told me he could "CURE" me (yeah right) and then declined to answer when I asked Him if He would do chemotherapy.
So anyways he shocked the living crap out of me! He took me off everything but the Avastin! Is this standard procedure when there are still 6 large mets in my liver and numerous (He still could not tell me how many) shrinking mets in both lungs??? or is this guy using me as a guinea pig as some sort of trial and not telling me?
I mean okay I admit I love the fact that the only real side effects I will have is nosebleeds (have been on Avastin along with the other products since the beginning and have had nosebleeds but not bad), hypertension, yes my blood pressure goes up a bit but not bad so far, peeling skin (have my bag balm (somewhere still haven't found it after the unpacking but am sure it is is in one of my bags), fatigue, have gotten used to that and learned how to deal with it and then the more serious side effects that I read but don't pay attention to unless/until they happen then get on the phone with my PA and start screaming in pain (grins ~ no seriously really I do) and to add to that even with the blood draw, the seeing the Dr, the administration of the premeds and the Avastin I get out of there in under 2 hours instead of 5 and NO pack to wear home.
But in spite of all these "good things" I am seriously concerned about this course of treatment and would love to hear opinions, facts that have happened to any others that were put on Avastin alone and any other help ya'll might have.
Thank you and god bless all.
Friday, December 11, 2009
Just a short note
Just a short note to let ya'll know I "think" the depression is over with and I am out of bed and showered and taking care of myself.
I had a talk with Tom and told him the reality of this is things are going to get uglier before they get pretty, the throwing up and diarrhea, the neuropathy, the mood swings, the pain etc, and he IS going to have to help with a lot of the household things. He says he will and today he helped me bring the laundry down to the machines and will help me bring them up so maybe things will get better if I keep it as "I need you" instead "Do it dammit" LOL
I love him so much and I guess part of the fact is sometimes I feel worthless when I cannot take care of him as I did before I started the chemo and that hits me hard mentally and emotionally.
So guess am on an up mood swing, any bets before the next down mood swing hits? (LOL well only partly joking).
Take care and have a wonderful day everyone.
I had a talk with Tom and told him the reality of this is things are going to get uglier before they get pretty, the throwing up and diarrhea, the neuropathy, the mood swings, the pain etc, and he IS going to have to help with a lot of the household things. He says he will and today he helped me bring the laundry down to the machines and will help me bring them up so maybe things will get better if I keep it as "I need you" instead "Do it dammit" LOL
I love him so much and I guess part of the fact is sometimes I feel worthless when I cannot take care of him as I did before I started the chemo and that hits me hard mentally and emotionally.
So guess am on an up mood swing, any bets before the next down mood swing hits? (LOL well only partly joking).
Take care and have a wonderful day everyone.
Wednesday, December 9, 2009
Update on PET scan
My Oncologist's Assistant just called me and told me the results of my PET scan:
Cancer cells (mets) in the lungs are shrinking
There were 12 large cancer cells (mets) in my liver, there are now 6.
Crying, as I am happy and hopeful but scared too, three more months of the same chemo to come, please God let me be able to take it.
Cancer cells (mets) in the lungs are shrinking
There were 12 large cancer cells (mets) in my liver, there are now 6.
Crying, as I am happy and hopeful but scared too, three more months of the same chemo to come, please God let me be able to take it.
Why
Why am I so exhausted, why am I so depressed I don't want to do anything or get out of bed?
Why don't I ever get what "I" want in a relationship; to get told I am pretty and appreciated as well as loved, to get a rose from time to time or some some token of affection, a small I love you letter, or something? (yes I appreciate the one fake rose with the teddy bear on it Tom and it touched me greatly) No I get told since I am going to die anyways why spend money on me for jewelry (yeah I still think about that) and Tom out and out told me he is not my knight on a white horse or Prince Charming.
Why do I think sometimes it would be better to just stop the chemo, live whatever time I left at least healthy rather than ill or afraid of the next chemo treatment, why was I chosen to get cancer? Why do I get to feel less of a woman because I have to wear bladder pads (since it seems my bladder has dropped again and I can't get the operation as to have it lifted again as long as I am on chemo) and Tom seemingly isn't attracted to me anymore? Why? Just Why?
So anyways I had my PET scan and just waiting for the results and then next Monday I go to have chemo again and am scared of it, knowing it got worse the last time and will just continue to get worse.
I'm the one with cancer and sick and yet guess who packed "everything" ing in the house to move????? Me, because Tom is a procrastinator and I stress over doing things at the last minute. His reasoning? "I hate to live out of boxes" and yet when we get moved here (had moving men with a truck) guess who had to unpack "everything" and put it away, even to his clothes in the closet and in "HIS" dresser.
I am feeling very resentful right now but cannot talk about it to him, we almost came to the "let's just split up" part when I tried to talk to him about helping me pack before we moved and I am afraid it will really happen if I keep at him.
I feel like I am his maid, his laundress, his cat sitter, his cook and now his mother nagging him to put things up on the walls so the cats won't get them and knock them down. He loves me I know this, and I know he cares but sometimes I need more than a bear hug or a how are you feeling or a fleeting kiss or a pressing my lips to the side of HIS neck, sometimes I need more and yet how do I get that when I now know he won't give them to me or is incapable of doing so, I guess since I love him so much I once again make the sacrifice of giving up the me for him (meaning he gets everything the way he wants it and I make do with what he does give me.
I am so terribly exhausted and have no energy to do anything, my only patch of sun in these clouds is the hopefully good results of my PET scan, I am spiraling down into depression and none of the drugs my Dr. is giving me is helping me and I have no friends to talk to, don't want to "inconvenience" Tom by asking him to drive me to a counsellorl and I am so scared of my next chemo session.
Why don't I ever get what "I" want in a relationship; to get told I am pretty and appreciated as well as loved, to get a rose from time to time or some some token of affection, a small I love you letter, or something? (yes I appreciate the one fake rose with the teddy bear on it Tom and it touched me greatly) No I get told since I am going to die anyways why spend money on me for jewelry (yeah I still think about that) and Tom out and out told me he is not my knight on a white horse or Prince Charming.
Why do I think sometimes it would be better to just stop the chemo, live whatever time I left at least healthy rather than ill or afraid of the next chemo treatment, why was I chosen to get cancer? Why do I get to feel less of a woman because I have to wear bladder pads (since it seems my bladder has dropped again and I can't get the operation as to have it lifted again as long as I am on chemo) and Tom seemingly isn't attracted to me anymore? Why? Just Why?
So anyways I had my PET scan and just waiting for the results and then next Monday I go to have chemo again and am scared of it, knowing it got worse the last time and will just continue to get worse.
I'm the one with cancer and sick and yet guess who packed "everything" ing in the house to move????? Me, because Tom is a procrastinator and I stress over doing things at the last minute. His reasoning? "I hate to live out of boxes" and yet when we get moved here (had moving men with a truck) guess who had to unpack "everything" and put it away, even to his clothes in the closet and in "HIS" dresser.
I am feeling very resentful right now but cannot talk about it to him, we almost came to the "let's just split up" part when I tried to talk to him about helping me pack before we moved and I am afraid it will really happen if I keep at him.
I feel like I am his maid, his laundress, his cat sitter, his cook and now his mother nagging him to put things up on the walls so the cats won't get them and knock them down. He loves me I know this, and I know he cares but sometimes I need more than a bear hug or a how are you feeling or a fleeting kiss or a pressing my lips to the side of HIS neck, sometimes I need more and yet how do I get that when I now know he won't give them to me or is incapable of doing so, I guess since I love him so much I once again make the sacrifice of giving up the me for him (meaning he gets everything the way he wants it and I make do with what he does give me.
I am so terribly exhausted and have no energy to do anything, my only patch of sun in these clouds is the hopefully good results of my PET scan, I am spiraling down into depression and none of the drugs my Dr. is giving me is helping me and I have no friends to talk to, don't want to "inconvenience" Tom by asking him to drive me to a counsellorl and I am so scared of my next chemo session.
Monday, November 30, 2009
CEA level from 11/23/09
Down to double digits = 74!!!!!!. Exhausted and moving tomorrow, not feeling to hot but will make it through, just wanted to update.
Friday, November 27, 2009
November 23rd's chemo session
Okay does it get any worse than this cause if it does just kill me now. Went in on Monday 23rd for chemo, my god first it was a workout to get the blood flowing from the port; sit down, stand up, raise your arms, lower your arms, raise one arm, lower that one, raise the other arms, lay back, well finally they got it and drew the blood.
Then went in to see the Oncologist's Assistant Christine, she says my white blood cell count was 3.4, and it was up to 5, while anything under 2 is bad, well she "decided" she wanted me to get a 1/2 a shot to bring the count back up on Weds when I had the port taken out. (WTF? 3.4 isn't under 2???????!!!!!????) Also she is setting me up for my PET scan AND giving me a week off chemo as we are moving ~ Yeah but also scared about what the pesky cancer cells will do while I take a break. She also says we may have to lower the dosages on some of the chemo meds.
So I go in to get chemo and everything goes fine at first..... we watched videos on my laptop, I slept, we talked then all of a sudden this horrendous pain hit my stomach, it was like someone thrust a fist through and grabbed my stomach and twisted it..... no throwing up no diarrhea just this horrendous pain. I tried to bear with it but couldn't and started crying and my nurse came over and checked on me, she went and talked to the Oncologist and came back and gave me a shot of morphine (Oh sweet relief) that helped tremendously. Then a little bit later the 5-FU was pushed and then the pack set up and we went home.
I thought I was going to die that night.... I got the chills so bad could not get warm and could not sleep and my pains hit again but not as bad but when I started crying my eyes hurt so bad I don't know which was worse moaning and writhing in pain from my gut or crying and my eyes burning (does the chemo come out in your tear ducts??)
Tuesday pretty much the same but Monday night and Tuesday had diarrhea and wet the bed so Tom helped me and did laundry and made me comfortable. Monday really didn't eat anything, just tried to sip Gatorade, Tuesday had some broth, Gatorade's (sips) and water (sips). Wednesday finally ate a cheese sandwich and a banana and a full Gatorade and part of a pedialyte (God that stuff tastes terrible).
Wednesday got the pack removed and got two shots. One to bring my white blood count up and the other was a mixture of steroid, antibiotic and pain killer.
Came home, Tom went to work and I laid in bed all day, had a banana sandwich and sprite. Felt better but fatigued and just took it easy.
Had a great Thanksgiving, Tom went out and got us meals from Coco's which were really good and we laid in bed and watched movies (Angels and Demons is great by the way) Been taking my pills so no nausea but last night my eyes hurt so very bad I had to put a wet cloth over them for a time.
Today am better, still fatigued but going to take it easy, read and watch TV today and just ride out the tiredness. Pepto does help with diarrhea and believe me if they give you compazine TAKE it after you eat something in the morning it does away with the nausea altogether.
Am having the neuropathy with hands and feet and my feet are starting to peel so bag balm is going to get put on today with socks.
My PET scan is set up for December 7th, and my next chemo session is December 14th.
Will keep ya'll updated and hope everyone had a good and safe Thanksgiving.
XOXOXOXOXO
Then went in to see the Oncologist's Assistant Christine, she says my white blood cell count was 3.4, and it was up to 5, while anything under 2 is bad, well she "decided" she wanted me to get a 1/2 a shot to bring the count back up on Weds when I had the port taken out. (WTF? 3.4 isn't under 2???????!!!!!????) Also she is setting me up for my PET scan AND giving me a week off chemo as we are moving ~ Yeah but also scared about what the pesky cancer cells will do while I take a break. She also says we may have to lower the dosages on some of the chemo meds.
So I go in to get chemo and everything goes fine at first..... we watched videos on my laptop, I slept, we talked then all of a sudden this horrendous pain hit my stomach, it was like someone thrust a fist through and grabbed my stomach and twisted it..... no throwing up no diarrhea just this horrendous pain. I tried to bear with it but couldn't and started crying and my nurse came over and checked on me, she went and talked to the Oncologist and came back and gave me a shot of morphine (Oh sweet relief) that helped tremendously. Then a little bit later the 5-FU was pushed and then the pack set up and we went home.
I thought I was going to die that night.... I got the chills so bad could not get warm and could not sleep and my pains hit again but not as bad but when I started crying my eyes hurt so bad I don't know which was worse moaning and writhing in pain from my gut or crying and my eyes burning (does the chemo come out in your tear ducts??)
Tuesday pretty much the same but Monday night and Tuesday had diarrhea and wet the bed so Tom helped me and did laundry and made me comfortable. Monday really didn't eat anything, just tried to sip Gatorade, Tuesday had some broth, Gatorade's (sips) and water (sips). Wednesday finally ate a cheese sandwich and a banana and a full Gatorade and part of a pedialyte (God that stuff tastes terrible).
Wednesday got the pack removed and got two shots. One to bring my white blood count up and the other was a mixture of steroid, antibiotic and pain killer.
Came home, Tom went to work and I laid in bed all day, had a banana sandwich and sprite. Felt better but fatigued and just took it easy.
Had a great Thanksgiving, Tom went out and got us meals from Coco's which were really good and we laid in bed and watched movies (Angels and Demons is great by the way) Been taking my pills so no nausea but last night my eyes hurt so very bad I had to put a wet cloth over them for a time.
Today am better, still fatigued but going to take it easy, read and watch TV today and just ride out the tiredness. Pepto does help with diarrhea and believe me if they give you compazine TAKE it after you eat something in the morning it does away with the nausea altogether.
Am having the neuropathy with hands and feet and my feet are starting to peel so bag balm is going to get put on today with socks.
My PET scan is set up for December 7th, and my next chemo session is December 14th.
Will keep ya'll updated and hope everyone had a good and safe Thanksgiving.
XOXOXOXOXO
Saturday, November 21, 2009
Why am I even doing this
Why am I even doing the chemo, not like anyone cares if I die. Yeah poor woe is me mood again. I am not mad, just disapointed and rethinking my way of looking at someone. Tired, hurt, packed and moved everything but "his" clothes as with one week and two days to go someone had to do it, we had a fight last night and I am doing nothing anymore, no packing, no unpacking when we get there, no cleaning, no cooking, he can have his life like he "supposedly" had it before, I'll lay in bed and eat bonbons, I will not allow myself to cry although he hurt me deeply and he has not even bothered to want to discuss with me some issues I brought up when we talked on the phone last night while he was at work.
Seems I'm no longer a priority with him, oh well, he won't have to put up with me long......................
Seems I'm no longer a priority with him, oh well, he won't have to put up with me long......................
Tuesday, November 17, 2009
Had a wonderful day yesterday and today is just the day we laid around the house
Well yesterday we went to see 2012 (Great Great Movie) then we walked the mall and we went to Kohl's and got me some warm booties for the coming winter, we went through Barnes and Noble and I had to sit down like 5 times as fatigue was just overcoming me.
I really really hate that part of the chemo, I walk up 15 steps to our studio and have to rest like every third step, that and the diarrhea, am steadily keeping a bottle of pepto by my bedside to stave that off as my poor little butt, eeeps sorry TMI.
Anyways, we went window shopping to get some ideas for our new place and then to Coco's to get a pumpkin pie to bring home. I was hoping to cook a turkey dinner for Thanksgiving but Tom decided platters from Coco's of their Turkey Feast and another pumpkin pie so the strain on me is minimum.
I also gave in on wanting to try a different cat litter, Tom is going back to the cat litter and will take over scooping some on the litter and on cleaning the boxes when needed so He is definitely willing to help me.
Got some good news from my Oncologist my CEA from 11/09/09 is 113 so it IS steadily dropping. On the 23rd is my sixth chemo treatment and I talk to my Oncologist's assistant about scheduling my PET scan so we can decide do we keep going with chemo, do we do surgery, do we try ablation or what so will keep you up to date.
We move two weeks from today so probably won't post until chemo on Monday as I will be busy cleaning and boxing some more stuff up, but I will take care of myself and take it easy I promise.
Talk to you on Monday and take of yourselves, ya'll .............................
I really really hate that part of the chemo, I walk up 15 steps to our studio and have to rest like every third step, that and the diarrhea, am steadily keeping a bottle of pepto by my bedside to stave that off as my poor little butt, eeeps sorry TMI.
Anyways, we went window shopping to get some ideas for our new place and then to Coco's to get a pumpkin pie to bring home. I was hoping to cook a turkey dinner for Thanksgiving but Tom decided platters from Coco's of their Turkey Feast and another pumpkin pie so the strain on me is minimum.
I also gave in on wanting to try a different cat litter, Tom is going back to the cat litter and will take over scooping some on the litter and on cleaning the boxes when needed so He is definitely willing to help me.
Got some good news from my Oncologist my CEA from 11/09/09 is 113 so it IS steadily dropping. On the 23rd is my sixth chemo treatment and I talk to my Oncologist's assistant about scheduling my PET scan so we can decide do we keep going with chemo, do we do surgery, do we try ablation or what so will keep you up to date.
We move two weeks from today so probably won't post until chemo on Monday as I will be busy cleaning and boxing some more stuff up, but I will take care of myself and take it easy I promise.
Talk to you on Monday and take of yourselves, ya'll .............................
Friday, November 13, 2009
Things have been going okay this week except;
Diarrhea (can't tell if the pepto is helping, as of the last two nights it's not, but I am still trying, nausea (although the compazine is helping), mood swings although my wonderful Tom is helping with the crying by just holding me and talking things through and the neuropathy which is getting worse. But all in all I don't have it as bad as others do and well I am just struggling through to after the next chemo session to find out the results of the PET scan.
I used to role play and then just talking on a bulletin board on an online fantasy world, today I realized it's nothing more than a distraction and my energies and thoughts and feelings and attention need to be on Tom, my Miracle and on myself and my disease and treatment.
Thank You Tom, for being with me through this and helping me through it, I love you so much and am soooo very grateful for having you in my life and for You being the person you are.
I used to role play and then just talking on a bulletin board on an online fantasy world, today I realized it's nothing more than a distraction and my energies and thoughts and feelings and attention need to be on Tom, my Miracle and on myself and my disease and treatment.
Thank You Tom, for being with me through this and helping me through it, I love you so much and am soooo very grateful for having you in my life and for You being the person you are.
Tuesday, November 10, 2009
5th Chemo session
So yesterday I went to my 5th chemotherapy session, one more to go before I get a PET scan to see the chemo is doing anything all, it could be working and the cancer cells shrinking, it could be doing anything at all they could be growing or they could be just staying stagnant. What gives me hope although I know it's not the best indicator is the CEA levels keep going now, from my 10/26/09 blood draw it was 159 and I guess that horrendous shot to up my white blood cells worked as they were at 5 yesterday.
We had a semi-private room this time, (two other women in it) and it was great cause I was right by the bathroom and could get up and go as much as I needed to (a lot) without bothering anyone else. The time flew by as we all talked about different things; other cancers and treatments, our side effects and what helps and what doesn't and then we turned to politics and we are Obama haters and think this medical bill passing is chit but thankfully it still has to go through the Senate so maybe it will be better modified or cut off at the knees.
My Oncologist suggested bag balm for my hands and feet at night as that does help the hand/foot syndrome and also because I don't want to take Imodium for the diarrhea she suggested Pepto Bismo as I am really more afraid of the constipation than the diarrhea and the Pepto Bismo will help the diarrhea without throwing me into constipation.
Last night was a good night, ate a late meal and took my compazine and pretty much slept through the night with only one instance of diarrhea. Put the bag balm on my hands and feet with socks and gloves and already can see results, I will use this regularly.
On a sad note my Oncologists Assistant's, Assistant is leaving to go to New York. I am going to miss Julianna she is right there when I need anything from Kristin or my Oncologist ((((((((((((((HUGS)))))))))))))))) take care and be well and know you'll be missed Julianna
We had a semi-private room this time, (two other women in it) and it was great cause I was right by the bathroom and could get up and go as much as I needed to (a lot) without bothering anyone else. The time flew by as we all talked about different things; other cancers and treatments, our side effects and what helps and what doesn't and then we turned to politics and we are Obama haters and think this medical bill passing is chit but thankfully it still has to go through the Senate so maybe it will be better modified or cut off at the knees.
My Oncologist suggested bag balm for my hands and feet at night as that does help the hand/foot syndrome and also because I don't want to take Imodium for the diarrhea she suggested Pepto Bismo as I am really more afraid of the constipation than the diarrhea and the Pepto Bismo will help the diarrhea without throwing me into constipation.
Last night was a good night, ate a late meal and took my compazine and pretty much slept through the night with only one instance of diarrhea. Put the bag balm on my hands and feet with socks and gloves and already can see results, I will use this regularly.
On a sad note my Oncologists Assistant's, Assistant is leaving to go to New York. I am going to miss Julianna she is right there when I need anything from Kristin or my Oncologist ((((((((((((((HUGS)))))))))))))))) take care and be well and know you'll be missed Julianna
Friday, November 6, 2009
Hand/Foot syndrome
Okay, better emotionally and things are looking up with me packing a little each day for our move on December 1st (grin)
Thank you so much all for bearing with me. My Oncologist is putting me on an antidepressant so hopefully once that gets in my system (about a week) there will be no more meltdowns.
So, last night I noticed my hands are redder than usual (usual being not red at all) and my skin is starting to peel a little bit. I didn't think with the chemotherapy I am taking that that was a side effect but when I have time (am doing laundry now then have to run to the drugstore) will do research here on the net to see what is going on. So will report back later today ...................... Have a great and wonderful day everyone.
Here is what I found:
"Hand-Foot Syndrome
Other terms: Palmar-Plantar Erythrodysesthesia; PPE
What is hand-foot syndrome?
Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU) (FRICK A DUCK, THIS IS ONE OF THE DRUGS I TAKE), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.
Things you can do if you suspect hand-foot syndrome (Palmar-Plantar Erythrodysesthesia):
Prevention: Prevention is very important in trying to reduce the development of hand-foot syndrome. Actions taken to prevent hand-foot syndrome will help reduce the severity of symptoms should they develop.
This involves modifying some of your normal daily activities to reduce friction and heat exposure to your hands and feet for a period of time following treatment (approximately one week after IV medication, much as possible during the time you are taking oral (by mouth) medication such as capcitabine).
Avoid long exposure of hands and feet to hot water such as washing dishes, long showers, or tub baths.
Short showers in tepid water will reduce exposure of the soles of your feet to the drug.
Dishwashing gloves should not be worn, as the rubber will hold heat against your palms.
Avoid increased pressure on the soles of the feet or palms of hands.
No jogging, aerobics, power walking, jumping - avoid long days of walking.
You should also avoid using garden tools, household tools such as screwdrivers, and other tasks where you are squeezing your hand on a hard surface.
Using knives to chop food may also cause excessive pressure and friction on your palms.
Cooling procedures:
Cold may provide temporary relief for pain and tenderness caused by hand-foot syndrome.
Placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas may be very comforting. Alternate on and off for 15-20 minutes at a time. (UH DUH I ALSO TAKE AVASTIN AND GET NEUROPATHY FROM IT SO HOW CAN I DO THE COOLING PROCEDURES?)
Lotions:
Rubbing lotion on your palms and soles should be avoided during the same period, although keeping these areas moist is very important between treatments.
Emollients such as Aveeno®, Lubriderm®, Udder Cream®, and Bag Balm® provide excellent moisturizing to your hands and feet.
Pain relief:
Over the counter pain relievers such as acetaminophen (Tylenol®) may be helpful to relieve discomfort associated with hand-foot syndrome. Check with your doctor.
Vitamins:
Taking Vitamin B6 (pyridoxine) may be beneficial to preventing and treating Plantar-Palmar Erythrodysesthesia, and should be discussed with your doctor.
Drugs/treatment changes that may be prescribed by your doctor:
Chemotherapy treatments may need to be interrupted or the dose adjusted to prevent worsening of hand-foot syndrome.
When to call your doctor or health care professional:
If you notice that your palms or soles become red or tender. This most often occurs before any peeling, and recommendations for relief of discomfort can be given. If you are on chemotherapy pills, you may be asked to hold treatment, or need your dose adjusted to prevent worsening of symptoms.
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice."
So since Monday is my next chemotherapy session I guess I talk to my oncologist about this, and here today was going okay and now am in tears again as I don't want anymore pain or discomfort but I don't want to stop the treatments especially since this will be my fifth treatment and then the sixth one they do the PET scan to see if the mets have shrunk enough to do other things (ablation, surgery, etc) and I don't want all the time I have put into this to mean nothing.
I am sorry to sound like a cry baby but this is very upsetting to me and I guess I thought I wouldn't have any side effects but maybe fatigue, well there goes that idea. So will talk to my Oncologist on Monday and see what happens.
Thank you so much all for bearing with me. My Oncologist is putting me on an antidepressant so hopefully once that gets in my system (about a week) there will be no more meltdowns.
So, last night I noticed my hands are redder than usual (usual being not red at all) and my skin is starting to peel a little bit. I didn't think with the chemotherapy I am taking that that was a side effect but when I have time (am doing laundry now then have to run to the drugstore) will do research here on the net to see what is going on. So will report back later today ...................... Have a great and wonderful day everyone.
Here is what I found:
"Hand-Foot Syndrome
Other terms: Palmar-Plantar Erythrodysesthesia; PPE
What is hand-foot syndrome?
Also called hand-foot syndrome or hand-to-foot syndrome, Palmar-Plantar Erythrodysesthesia is a side effect, which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. For example, Capecitabine (Xeloda®), 5-Flurouracil (5FU) (FRICK A DUCK, THIS IS ONE OF THE DRUGS I TAKE), continuous-infusion doxorubicin, doxorubicin liposomal (Doxil®), and high-dose Interleukin-2 can cause this skin reaction for some patients. Following administration of chemotherapy, small amounts of drug leak out of very small blood vessels called capillaries in the palms of the hands and soles of the feet. Exposure of your hands and feet to heat as well as friction on your palms and soles increases the amount of drug in the capillaries and increases the amount of drug leakage. This leakage of drug results in redness, tenderness, and possibly peeling of the palms and soles. The redness, also known as palmar-plantar erythema, looks like sunburn. The areas affected can become dry and peel, with numbness or tingling developing. Hand-foot syndrome can be uncomfortable and can interfere with your ability to carry out normal activities.
Things you can do if you suspect hand-foot syndrome (Palmar-Plantar Erythrodysesthesia):
Prevention: Prevention is very important in trying to reduce the development of hand-foot syndrome. Actions taken to prevent hand-foot syndrome will help reduce the severity of symptoms should they develop.
This involves modifying some of your normal daily activities to reduce friction and heat exposure to your hands and feet for a period of time following treatment (approximately one week after IV medication, much as possible during the time you are taking oral (by mouth) medication such as capcitabine).
Avoid long exposure of hands and feet to hot water such as washing dishes, long showers, or tub baths.
Short showers in tepid water will reduce exposure of the soles of your feet to the drug.
Dishwashing gloves should not be worn, as the rubber will hold heat against your palms.
Avoid increased pressure on the soles of the feet or palms of hands.
No jogging, aerobics, power walking, jumping - avoid long days of walking.
You should also avoid using garden tools, household tools such as screwdrivers, and other tasks where you are squeezing your hand on a hard surface.
Using knives to chop food may also cause excessive pressure and friction on your palms.
Cooling procedures:
Cold may provide temporary relief for pain and tenderness caused by hand-foot syndrome.
Placing the palms or bottoms of your feet on an ice pack or a bag of frozen peas may be very comforting. Alternate on and off for 15-20 minutes at a time. (UH DUH I ALSO TAKE AVASTIN AND GET NEUROPATHY FROM IT SO HOW CAN I DO THE COOLING PROCEDURES?)
Lotions:
Rubbing lotion on your palms and soles should be avoided during the same period, although keeping these areas moist is very important between treatments.
Emollients such as Aveeno®, Lubriderm®, Udder Cream®, and Bag Balm® provide excellent moisturizing to your hands and feet.
Pain relief:
Over the counter pain relievers such as acetaminophen (Tylenol®) may be helpful to relieve discomfort associated with hand-foot syndrome. Check with your doctor.
Vitamins:
Taking Vitamin B6 (pyridoxine) may be beneficial to preventing and treating Plantar-Palmar Erythrodysesthesia, and should be discussed with your doctor.
Drugs/treatment changes that may be prescribed by your doctor:
Chemotherapy treatments may need to be interrupted or the dose adjusted to prevent worsening of hand-foot syndrome.
When to call your doctor or health care professional:
If you notice that your palms or soles become red or tender. This most often occurs before any peeling, and recommendations for relief of discomfort can be given. If you are on chemotherapy pills, you may be asked to hold treatment, or need your dose adjusted to prevent worsening of symptoms.
Note: We strongly encourage you to talk with your health care professional about your specific medical condition and treatments. The information contained in this website is meant to be helpful and educational, but is not a substitute for medical advice."
So since Monday is my next chemotherapy session I guess I talk to my oncologist about this, and here today was going okay and now am in tears again as I don't want anymore pain or discomfort but I don't want to stop the treatments especially since this will be my fifth treatment and then the sixth one they do the PET scan to see if the mets have shrunk enough to do other things (ablation, surgery, etc) and I don't want all the time I have put into this to mean nothing.
I am sorry to sound like a cry baby but this is very upsetting to me and I guess I thought I wouldn't have any side effects but maybe fatigue, well there goes that idea. So will talk to my Oncologist on Monday and see what happens.
Thursday, November 5, 2009
Downward spiral emotionally
The tooth finally is going to be okay I think although every now and then I have to take a pill when it hurts. The dentist yesterday took out the medicine for the dry socket and is taking the stitches out next Wednesday.
My bones ache and hurt so much I am guessing from the shot to get my white blood count up or maybe it's arthritis starting, I just know I am in a lot of pain from it.
And twice this past two weeks I have woken up not able to breathe, drowning in my own vomit until I can get it up and cough and take wheezing gulps of air. I don't know if it's a side effect of the chemo or of the pain pills I have been taking for the teeth and legs.
Around the complex a new development. Tom and I had a big talk the past couple of days and although I won't get into it here, well the end result is I am a prisoner in our studio apartment. No, Tom did not tell me I could not leave; the neighbors have kept up their campaign of harassment and one that was supposedly our friend has now joined in and yesterday caught me sitting down at the table by the pool and told me why don't I just leave Tom, he deserves someone who is prettier, slimmer, has beautiful hair and will live a long happy life with him instead of die of cancer if indeed I have cancer at all.
They've won, I came upstairs and locked myself in the studio, and told Tom I will no longer go sit by the pool and drink coffee and type on my computer or look things up, I am broken, they have hurt me worse than I thought anyone could ever hurt me again and I can feel myself spiralling down into depression.
Tom of course thinks this is a wonderful thing, why it's marvelous, we can simply sit at the top of the stairs right outside our studio when I want to smoke and it gives us more time together inside laying in bed cuddling. Sounds great doesn't it? Yes it is wonderful to just stay shut inside in one room all the time and not be "allowed" by neighbors to enjoy the pool area, the beauty of the new day sitting down drinking coffee and watching the sun comes up, I know the symptoms of depression and I have no appetite and not because of the chemo, I cry all the time and not because of the chemo. I have no joy in my life and just want to lay in bed and watch TV until the pain pills make me pass out.
But I have to let all these feelings not show and be the "perfect" girlfriend and just stay stuck in the one room studio like a prisoner in a jail cell until we move on December 1st, isn't my life wonderful?............................
My bones ache and hurt so much I am guessing from the shot to get my white blood count up or maybe it's arthritis starting, I just know I am in a lot of pain from it.
And twice this past two weeks I have woken up not able to breathe, drowning in my own vomit until I can get it up and cough and take wheezing gulps of air. I don't know if it's a side effect of the chemo or of the pain pills I have been taking for the teeth and legs.
Around the complex a new development. Tom and I had a big talk the past couple of days and although I won't get into it here, well the end result is I am a prisoner in our studio apartment. No, Tom did not tell me I could not leave; the neighbors have kept up their campaign of harassment and one that was supposedly our friend has now joined in and yesterday caught me sitting down at the table by the pool and told me why don't I just leave Tom, he deserves someone who is prettier, slimmer, has beautiful hair and will live a long happy life with him instead of die of cancer if indeed I have cancer at all.
They've won, I came upstairs and locked myself in the studio, and told Tom I will no longer go sit by the pool and drink coffee and type on my computer or look things up, I am broken, they have hurt me worse than I thought anyone could ever hurt me again and I can feel myself spiralling down into depression.
Tom of course thinks this is a wonderful thing, why it's marvelous, we can simply sit at the top of the stairs right outside our studio when I want to smoke and it gives us more time together inside laying in bed cuddling. Sounds great doesn't it? Yes it is wonderful to just stay shut inside in one room all the time and not be "allowed" by neighbors to enjoy the pool area, the beauty of the new day sitting down drinking coffee and watching the sun comes up, I know the symptoms of depression and I have no appetite and not because of the chemo, I cry all the time and not because of the chemo. I have no joy in my life and just want to lay in bed and watch TV until the pain pills make me pass out.
But I have to let all these feelings not show and be the "perfect" girlfriend and just stay stuck in the one room studio like a prisoner in a jail cell until we move on December 1st, isn't my life wonderful?............................
Monday, November 2, 2009
In between update
I am on the upswing and feeling better physically as well as mentally and emotionally, and the latter two I really think help from the colon cancer forum and their words and support and from Tom.
WE GOT THE CONDO and move in December 1st!!!!! (GRIN)
That's a between chemo week so I should be able to be productive in helping with putting things away etc (am already packing stuff up as I feel able and we are hiring a moving company to move us).
One of the girls from the Colon Cancer group had said she would play "The Old Rugged Cross" on her dulcimer last night, now I had not even checked the forum last night but do you know I thought I could hear is softly last night and even found myself humming the refrain, true story I kid you not. (soft smiles and trembling lips at the kindness found there).
One more update, since last Monday the tooth has still been killing me, went back to the dentist and yes there is a dry socket, so they opened the gum up, put some medicine in it, put stitches in place and I go back Weds to see if it worked or they have to do it one more time, but even now after the dumbness has worn off there is a teeny ache but nothing like the pain I was having.
Also when you are having chemotherapy and your white blood cell counts go down and they say they have to give you a shot and you "might" feel pain in your bones? Believe me, you do! Icy/hot has been my friend the past week as leg and knee bones hurt so much.
I feel so silly letting little things get me down but you all and Tom are giving me strength I never thought I would have and I am fighting with all I have with positivity, taking care of myself, watching what I eat (especially the sugar) Also Tom and I have started our road on the talk to what I need from him and what he needs to expect when I am in a bad way from the chemo or just the cancer or just emotional and I am learning from him what he needs from me and what I can do to help him help me and help us. We still have a ways to go in communication on that side but we are communicating and that is what really counts.
Also, my wonderful Tom took me to my first live football game ever and even though his Chargers beat my Raiders we had a wonderful time. Thank you so much honey for giving me that gift.
(((((((((((Hugs and super thank you to everyone))))))))))))))))
WE GOT THE CONDO and move in December 1st!!!!! (GRIN)
That's a between chemo week so I should be able to be productive in helping with putting things away etc (am already packing stuff up as I feel able and we are hiring a moving company to move us).
One of the girls from the Colon Cancer group had said she would play "The Old Rugged Cross" on her dulcimer last night, now I had not even checked the forum last night but do you know I thought I could hear is softly last night and even found myself humming the refrain, true story I kid you not. (soft smiles and trembling lips at the kindness found there).
One more update, since last Monday the tooth has still been killing me, went back to the dentist and yes there is a dry socket, so they opened the gum up, put some medicine in it, put stitches in place and I go back Weds to see if it worked or they have to do it one more time, but even now after the dumbness has worn off there is a teeny ache but nothing like the pain I was having.
Also when you are having chemotherapy and your white blood cell counts go down and they say they have to give you a shot and you "might" feel pain in your bones? Believe me, you do! Icy/hot has been my friend the past week as leg and knee bones hurt so much.
I feel so silly letting little things get me down but you all and Tom are giving me strength I never thought I would have and I am fighting with all I have with positivity, taking care of myself, watching what I eat (especially the sugar) Also Tom and I have started our road on the talk to what I need from him and what he needs to expect when I am in a bad way from the chemo or just the cancer or just emotional and I am learning from him what he needs from me and what I can do to help him help me and help us. We still have a ways to go in communication on that side but we are communicating and that is what really counts.
Also, my wonderful Tom took me to my first live football game ever and even though his Chargers beat my Raiders we had a wonderful time. Thank you so much honey for giving me that gift.
(((((((((((Hugs and super thank you to everyone))))))))))))))))
Friday, October 30, 2009
Fourth Chemo session and a world of hurt
Sorry I haven't posted in a week or so but man I just couldn't. I had complications with the tooth pulling but first let me back that up to the weekend after the tooth pulling. I was on some serious knockout drugs and ended up peeing the bed then having diarrhea and I tried to clean everything up, but no money to do laundry and being ashamed of having these bodily things happen while your in bed with your boyfriend and then having pain and no energy to clean up well they all added up to make me feel the lowest I've felt yet.
So this past Monday I go into chemo and they can't get a blood draw from my port, well they tried and tried then sent me down to the surgery where they put it in, the assistant kept manipulating the thing under my skin (that hurt let me tell you and she's going "hmmm" "hmmmm") then she calls in the surgeon well come to find out a RARE thing happened with me, the week before this I had been laying down watching TV, heard a small click from my chest where the port is and felt it settle deeper into my chest, turns out the damn thing turned over!!!!!
So, the surgeon manipulates it back into place like a doctor would a baby who's in the breech position and says if it happens again they will have to cut me open and stitch the port down (great thought that it "might" happen again),.
So then go get my blood drawn, my CEA is down to 182 but my white cell count is down to 1.4. So get my chemo treatment and get told to come back Wednesday and get the port disconnected and then get a shot to boost my white blood cells.
One of my teeth they didn't work on at the dentist is KILLING me so we call and go into the dentist, the dentist looks and a RARE thing has happened, a piece of my jawbone got splintered when they pulled the tooth next to that one and got stuck in the gum and infected, etc etc. So we numbed the area, pulled the piece of bone and off we went.
I got more antibiotics and Tylenol #4.
So Wednesday we go back, get port taken out, have a bit of scare as she cannot get a blood draw right away then she got it and then I got the shot for the white blood cells. The nurse told me I would feel pain in the long bones of my legs so I get home take a Tylenol #4 and am out like a light for about 24 hours.
Yesterday I couldn't take the grubbiness of the house and the icky pissy and diarrhea smell and asked Tom to get me some quarters and did 5 loads of laundry and still have two to go, but the bed is clean and made, the house smells better and I am showered and clean although it took me all day to clean a studio and do laundry and I had like 20 meltdowns in between. I am taking Valium and even they don't help when I get overwhelmed or really let myself realize this is not going to have have a happy ending for me, I won' make it through this, I am going to die whether it's months or a few years, I'm not going to beat the odds.
And I don't want to leave Tom, I love him so much .............. Okay crying here so have to calm down. Tom is sleeping next to me and I'll just cuddle him and be thankful for the time we have now.
Please add me to the prayer list for strength as I really really need it now.
Two upbeat things, Tom passed His physical at work (yeah!) and hopefully the first of December we'll be moving into a one bedroom beautiful condo)
Okay will write more later as I am able................................
Love,
Marsha
So this past Monday I go into chemo and they can't get a blood draw from my port, well they tried and tried then sent me down to the surgery where they put it in, the assistant kept manipulating the thing under my skin (that hurt let me tell you and she's going "hmmm" "hmmmm") then she calls in the surgeon well come to find out a RARE thing happened with me, the week before this I had been laying down watching TV, heard a small click from my chest where the port is and felt it settle deeper into my chest, turns out the damn thing turned over!!!!!
So, the surgeon manipulates it back into place like a doctor would a baby who's in the breech position and says if it happens again they will have to cut me open and stitch the port down (great thought that it "might" happen again),.
So then go get my blood drawn, my CEA is down to 182 but my white cell count is down to 1.4. So get my chemo treatment and get told to come back Wednesday and get the port disconnected and then get a shot to boost my white blood cells.
One of my teeth they didn't work on at the dentist is KILLING me so we call and go into the dentist, the dentist looks and a RARE thing has happened, a piece of my jawbone got splintered when they pulled the tooth next to that one and got stuck in the gum and infected, etc etc. So we numbed the area, pulled the piece of bone and off we went.
I got more antibiotics and Tylenol #4.
So Wednesday we go back, get port taken out, have a bit of scare as she cannot get a blood draw right away then she got it and then I got the shot for the white blood cells. The nurse told me I would feel pain in the long bones of my legs so I get home take a Tylenol #4 and am out like a light for about 24 hours.
Yesterday I couldn't take the grubbiness of the house and the icky pissy and diarrhea smell and asked Tom to get me some quarters and did 5 loads of laundry and still have two to go, but the bed is clean and made, the house smells better and I am showered and clean although it took me all day to clean a studio and do laundry and I had like 20 meltdowns in between. I am taking Valium and even they don't help when I get overwhelmed or really let myself realize this is not going to have have a happy ending for me, I won' make it through this, I am going to die whether it's months or a few years, I'm not going to beat the odds.
And I don't want to leave Tom, I love him so much .............. Okay crying here so have to calm down. Tom is sleeping next to me and I'll just cuddle him and be thankful for the time we have now.
Please add me to the prayer list for strength as I really really need it now.
Two upbeat things, Tom passed His physical at work (yeah!) and hopefully the first of December we'll be moving into a one bedroom beautiful condo)
Okay will write more later as I am able................................
Love,
Marsha
Wednesday, October 21, 2009
Monday and today
So, Monday went and got my teeth taken care of: 3 pulled and seven filling all at one time. The insurance wouldn't pay for it all so the dentists office very graciously let me make payments on the balance (Five hundred and something) at $15 a month.
The dentist was great and so was his assistant. Barely any pain and right now the only thing that hurts is the side they had to "dig" the tooth out piece by piece as it wouldn't come straight out like the other ones.
So got an antibiotic prescription, another prescription for vicodin and told to come back today for a "deep cleaning" and consultation on 2 partial bridges.
Tom drove me and got there at 1pm today. They called me back right away, get set in the chair and the receptionist/biller comes back and says I am over my allowed dental allotment for the year by my other insurance so can't have the cleaning or bridges BUT the new year cycle for my allotment for dental comes up in January so we made an appointment then to get the deep cleaning and the partial bridges. Now if my white blood cell count and platelet count will just keep cooperating and the side effects of the chemo stays mild I should have my teeth all taken care of in January.
Okay, just wanted to update on that, talk to ya'll again next Monday if not before ~ You are all in my thoughts and prayers ................................................
The dentist was great and so was his assistant. Barely any pain and right now the only thing that hurts is the side they had to "dig" the tooth out piece by piece as it wouldn't come straight out like the other ones.
So got an antibiotic prescription, another prescription for vicodin and told to come back today for a "deep cleaning" and consultation on 2 partial bridges.
Tom drove me and got there at 1pm today. They called me back right away, get set in the chair and the receptionist/biller comes back and says I am over my allowed dental allotment for the year by my other insurance so can't have the cleaning or bridges BUT the new year cycle for my allotment for dental comes up in January so we made an appointment then to get the deep cleaning and the partial bridges. Now if my white blood cell count and platelet count will just keep cooperating and the side effects of the chemo stays mild I should have my teeth all taken care of in January.
Okay, just wanted to update on that, talk to ya'll again next Monday if not before ~ You are all in my thoughts and prayers ................................................
Tuesday, October 20, 2009
Oncologist visit and Dentist visit
Hope everyone is having a wonderful morning and day or night (depending where you are). It's 3:45 am here and once again I am wide awake, but plan on going back to bed soon.
Yesterday Tom and I went to see my Oncologist; blood pressure normal range, blood drawn and white blood cell count and platelet range doing very well. Will get the results of the CEA level again probably this next Monday as I go in for my fourth chemotherapy treatment.
I don't have the best of teeth and as I said had been having a toothache in an upper left molar. My Oncologist gave me a note that it was okay to do the extraction and treat me in the usual manner. There is a new dentist that opened not far from where Tom and I lived and we headed over there.
Not good news, not one but two teeth needed to be extracted and 7 cavities filled. I still have all my front and right to the side teeth, but all the molars are gone so we decided to do all the extractions and cavity filling in one fell swoop. I have to say, never felt any pain not even from the needle, just pressure at the most even when they pulled the one tooth out and dug the other one out.
Got my instructions and made very reasonable payment arrangements to cover the over and above cost my insurance will not pay, said thank you so very much and Tom brought me home. Took antibiotics and pain pills and replaced gauze over holes, so far so good, I even had a meal of soup and pudding and Gatorade.
I go back this Wednesday for a deep cleaning and then will consult with the dentist on partial dentures. Weird how for a long time I did not take the best care of my teeth and now with the knowledge that I can only buy so much time with the chemotherapy I now want to take better care of my teeth including getting them fixed LOL.
Well that's all the news for now, will write more later, I hope everyone has a great and wonderful day ...................................................
Yesterday Tom and I went to see my Oncologist; blood pressure normal range, blood drawn and white blood cell count and platelet range doing very well. Will get the results of the CEA level again probably this next Monday as I go in for my fourth chemotherapy treatment.
I don't have the best of teeth and as I said had been having a toothache in an upper left molar. My Oncologist gave me a note that it was okay to do the extraction and treat me in the usual manner. There is a new dentist that opened not far from where Tom and I lived and we headed over there.
Not good news, not one but two teeth needed to be extracted and 7 cavities filled. I still have all my front and right to the side teeth, but all the molars are gone so we decided to do all the extractions and cavity filling in one fell swoop. I have to say, never felt any pain not even from the needle, just pressure at the most even when they pulled the one tooth out and dug the other one out.
Got my instructions and made very reasonable payment arrangements to cover the over and above cost my insurance will not pay, said thank you so very much and Tom brought me home. Took antibiotics and pain pills and replaced gauze over holes, so far so good, I even had a meal of soup and pudding and Gatorade.
I go back this Wednesday for a deep cleaning and then will consult with the dentist on partial dentures. Weird how for a long time I did not take the best care of my teeth and now with the knowledge that I can only buy so much time with the chemotherapy I now want to take better care of my teeth including getting them fixed LOL.
Well that's all the news for now, will write more later, I hope everyone has a great and wonderful day ...................................................
Sunday, October 18, 2009
Just a quick update on side effects
The only remaining side effects seems to be a LOT of fatigue, I mean I am sleeping almost constantly when Tom is at work and barely stay awake for an hour or so when he is home and we are watching TV. The other side effect is the neuropathy. I seem to be waking up about 5:30 or 6am and I come down by the pool to read the paper and let Tom sleep some more.
Typing, touching the table, even a breeze makes my fingers, hands and feet tingle.
Diarrhea and nausea/throwing up seem to be gone (hopefully) for this round. Monday I see my Oncologist and get blood work done, then the next Monday is chemotherapy treatment again.
Talk to ya'll later and have a wonderful day everyone ........................
Typing, touching the table, even a breeze makes my fingers, hands and feet tingle.
Diarrhea and nausea/throwing up seem to be gone (hopefully) for this round. Monday I see my Oncologist and get blood work done, then the next Monday is chemotherapy treatment again.
Talk to ya'll later and have a wonderful day everyone ........................
Thursday, October 15, 2009
Restraining order
The judge denied it, guess me or Tom have to have black eyes and bloody lips to get any help with this harassement issue. I am not going to let the bullies win though I refuse to stay locked in my house afraid of being out in the sun and breeze on the days I feel well enough to.
I have been trying to get my meds by mail for the past four hours and am crying steadily I am so frustrated about both issues.
God grant me the serenity to accept the things I cannot change, to change the things I can and to know the difference. ..........................................
I have been trying to get my meds by mail for the past four hours and am crying steadily I am so frustrated about both issues.
God grant me the serenity to accept the things I cannot change, to change the things I can and to know the difference. ..........................................
Wednesday, October 14, 2009
Getting pack taken off and new CEA count
Went back to the cancer treatment center and had the pack disconnected from my port. They also took out some of the stitches that had not been absorbed by my body, there are a couple more to take out yet. No blockage in the port so far, free flow of blood so I am doing pretty good there.
Have felt nauseous the past few days and very tired, today is going to be a lay in bed all day and not do a thing except watch TV and sleep.
My CEA count from 10/05/09 is 228.36 so it's going down (Yeah chemo keep fighting that cancer).
Next Monday go back to my Oncologist for blood draw and follow up with him, then the Monday after, chemo again.
Will update as side effects get worse or better and definitely will update tomorrow.
Take care all ......................................................
Have felt nauseous the past few days and very tired, today is going to be a lay in bed all day and not do a thing except watch TV and sleep.
My CEA count from 10/05/09 is 228.36 so it's going down (Yeah chemo keep fighting that cancer).
Next Monday go back to my Oncologist for blood draw and follow up with him, then the Monday after, chemo again.
Will update as side effects get worse or better and definitely will update tomorrow.
Take care all ......................................................
Tuesday, October 13, 2009
Third chemotherapy session
Pretty much the same routine, check in, get my blood drawn (through my port, not problems getting a draw and she left the tube in for when I came back to the day waiting room for treatment.) wait for the labs to come back, guess my white blood cell count and platelets are doing fine as they take me back for treatment.
Tom and I get all set up in the corner and the treatment begins, we watched more Grey's Anatomy on my laptop and Tom went and got us lunch at some point, good lunch and then the rest of the treatment. They say 2-4 hours for treatment but I don't think we have or will get out of there in under six hours what with the waiting to be seen (not all that long), the blood draws (over in a minute), the waiting to be seen as they wait for the blood results to come back (little bit longer wait), the treatment (seems forever).
The nurse assigned today gave me the Avastin in 30 minutes rather than an hour, I didn't really understand her explanation of why so have to call the Dr. today anyway so will ask or tomorrow when I got to get the pack unplugged. (It was either they were pushing more in at a faster rate, or pushing less so it didn't take so long)
I know I dosed during treatment but don't think I really fell asleep. I have been real nervous lately and my Dr. has me on Valium 5mg. and Wellbutrin, but the Wellbutrin is for to stop smoking (Stupid insurance companies and their more hoops, had to take the patch and my Dr. had to report it did not work, now have to take Wellbutrin and then when my Dr. says it does not work they will either FINALLY fill my prescription for Chantix to stop smoking or put me through more hoops (Uh, DUH! in case no one has been paying attention smokers have become pariahs and there are even cities in Southern California that are banning smoking in their City. Smoking is an addiction and bad for your health right? Uh duh, cancer here and going through chemotherapy wouldn't it make sense for the insurance to want to help me stop smoking)
So okay back to the original subject. after chemotherapy I was really shaky and weak and emotional, have been going through spells like this, not sure if it's the chemo, the chit with the restraining order and court upcoming on Thursday or my worry about Tom and me. Got to talk to Kristin and she asked me how often I take the Wellbutrin and I said once a day, she said up it to two a day and we will see how that works. Stupid chemo brain! When I got home I found out I take one every 12 hours so already take two a day. I called the office and left a message for her and will call her tomorrow.
The side effects from the oxaliplatin have started to kick in, I went to get Tom a cold pack from the freezer and was like "OUCH" the minute my hands touched the cold stuff. No more teeny static electricity shocks, nope big time hurting burning sensation when I touch cold, shards of glass feel in the back of my throat when I drink something cold and even tingling in my hands and feet even when not touching anything cold.
It's 3:44am right now and I threw up for like the fifth time. Oh yeah this treatment is going wonderful.
The baby shower Sunday was nice for my ex neighbor, small as a lot of people backed out of it but cute. And she loved the stroller we got her although Tom thought spending over $200 for a baby stroller with a car seat was a bit much. She is pregnant, just got kicked out of this apartment complex over her stupid boyfriend drinking, just broke up with him and is moving into a "roommate" situation for the first time in her life, I think she deserved a very nice gift and we payed halvsies on it so ................. (grin).
Forgot to ask what my last CEA count so will ask when I call today or just find out on Wednesday.
Okay will write more today as the side effects keep coming, take care all ............................
Tom and I get all set up in the corner and the treatment begins, we watched more Grey's Anatomy on my laptop and Tom went and got us lunch at some point, good lunch and then the rest of the treatment. They say 2-4 hours for treatment but I don't think we have or will get out of there in under six hours what with the waiting to be seen (not all that long), the blood draws (over in a minute), the waiting to be seen as they wait for the blood results to come back (little bit longer wait), the treatment (seems forever).
The nurse assigned today gave me the Avastin in 30 minutes rather than an hour, I didn't really understand her explanation of why so have to call the Dr. today anyway so will ask or tomorrow when I got to get the pack unplugged. (It was either they were pushing more in at a faster rate, or pushing less so it didn't take so long)
I know I dosed during treatment but don't think I really fell asleep. I have been real nervous lately and my Dr. has me on Valium 5mg. and Wellbutrin, but the Wellbutrin is for to stop smoking (Stupid insurance companies and their more hoops, had to take the patch and my Dr. had to report it did not work, now have to take Wellbutrin and then when my Dr. says it does not work they will either FINALLY fill my prescription for Chantix to stop smoking or put me through more hoops (Uh, DUH! in case no one has been paying attention smokers have become pariahs and there are even cities in Southern California that are banning smoking in their City. Smoking is an addiction and bad for your health right? Uh duh, cancer here and going through chemotherapy wouldn't it make sense for the insurance to want to help me stop smoking)
So okay back to the original subject. after chemotherapy I was really shaky and weak and emotional, have been going through spells like this, not sure if it's the chemo, the chit with the restraining order and court upcoming on Thursday or my worry about Tom and me. Got to talk to Kristin and she asked me how often I take the Wellbutrin and I said once a day, she said up it to two a day and we will see how that works. Stupid chemo brain! When I got home I found out I take one every 12 hours so already take two a day. I called the office and left a message for her and will call her tomorrow.
The side effects from the oxaliplatin have started to kick in, I went to get Tom a cold pack from the freezer and was like "OUCH" the minute my hands touched the cold stuff. No more teeny static electricity shocks, nope big time hurting burning sensation when I touch cold, shards of glass feel in the back of my throat when I drink something cold and even tingling in my hands and feet even when not touching anything cold.
It's 3:44am right now and I threw up for like the fifth time. Oh yeah this treatment is going wonderful.
The baby shower Sunday was nice for my ex neighbor, small as a lot of people backed out of it but cute. And she loved the stroller we got her although Tom thought spending over $200 for a baby stroller with a car seat was a bit much. She is pregnant, just got kicked out of this apartment complex over her stupid boyfriend drinking, just broke up with him and is moving into a "roommate" situation for the first time in her life, I think she deserved a very nice gift and we payed halvsies on it so ................. (grin).
Forgot to ask what my last CEA count so will ask when I call today or just find out on Wednesday.
Okay will write more today as the side effects keep coming, take care all ............................
Monday, October 12, 2009
Can't sleep, worried, irritable, depressed
Well yesterday I guess I hit the overload button and went off on Tom, crying and letting out things I had let build up in me. I am so very thankful to have him in my life he is a wonderful man, yet sometimes, it's like I am the last person he considers. I guess it's just my anxiety over my chemotherapy session which will be today and wondering why my blood pressure keeps going up when I have never had high blood pressure in my life. It's not bad enough yet the Dr. is putting me on meds for it but what if it does get that high?
I feel guilty about Tom having to take me to the Dr's and then staying with me for the treatments, maybe today I'll ask him to just drop me off and then I'll call him when I am done and ready to go home, and maybe I can check into the van that they say I can sign up for to come get me. I just feel bad about taking up his time on his days off.
And it doesn't help that he really doesn't talk to me about things, I mean we talk, we laugh, we have discussions but never about "us" and if we do I initiate it. And I don't want to become the girlfriend who says "we have to talk". Maybe I need to talk to my Dr. about depression medication, I'll see.
Tom fell out of love with his wife, what happens if he falls out of love with me? I am so anxious lately and worried and I don't want to be. I am just tired, just so very tired and to have Tom not talk to me about important things like going to court on Thursday, and my mood swings and well other intimate things.
Last night he took a neighbor to the store and I woke up and he wasn't home, well I went to the door in time to see him and the neighbor walk right by me on the lower level and heard their conversation, then he comes home and I ask just casually what they talked about, he says nothing. Fine you don't want to tell me then don't tell me but ....................
I know I shouldn't be griping as he is my miracle and I am lucky to have him but I am only human and a broken one at that.....................................................
I feel guilty about Tom having to take me to the Dr's and then staying with me for the treatments, maybe today I'll ask him to just drop me off and then I'll call him when I am done and ready to go home, and maybe I can check into the van that they say I can sign up for to come get me. I just feel bad about taking up his time on his days off.
And it doesn't help that he really doesn't talk to me about things, I mean we talk, we laugh, we have discussions but never about "us" and if we do I initiate it. And I don't want to become the girlfriend who says "we have to talk". Maybe I need to talk to my Dr. about depression medication, I'll see.
Tom fell out of love with his wife, what happens if he falls out of love with me? I am so anxious lately and worried and I don't want to be. I am just tired, just so very tired and to have Tom not talk to me about important things like going to court on Thursday, and my mood swings and well other intimate things.
Last night he took a neighbor to the store and I woke up and he wasn't home, well I went to the door in time to see him and the neighbor walk right by me on the lower level and heard their conversation, then he comes home and I ask just casually what they talked about, he says nothing. Fine you don't want to tell me then don't tell me but ....................
I know I shouldn't be griping as he is my miracle and I am lucky to have him but I am only human and a broken one at that.....................................................
Friday, October 9, 2009
Updated CEA Level for 09/28/09
Julianna from my Oncologists office called and my CEA level from 09/28/09 blood draw is 238.9 (whew it went down!) So now am waiting for my CEA Levels from 10/05/09
Just wanted to update ;)
Just wanted to update ;)
A song from a talented lady with tragedy in her heart that I am taking as my motto
Kandi Burruss from The Real Housewives of Atlanta is grieving from the death of her ex-fiance A.J. Jewell. The song “Fly Above” was written about dealing with public criticism
“Fly Above:”
I’m so comfortable in the skin I’m in,
I’m secure about who I am,
so you go ahead and talk all you wanna,
I built up a shell and it’s hard and it’s armored.
It seems like every step I take up,
drama comes along with the bread I cake up.
But you aint doing nothin if you don’t have haters,
so I welcome you to do what’s in your nature.
I'm like a jet airplane,
way too high to hear you throwing salt on my name.
I know I’m not the only one
if people love to hate you
go and throw your hands up
go ahead and spread your wings
cuz you gotta fly above.
I fly above all the drama,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me.
So I fly above all the haters,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me
If everybody hatin’ cuz you fly-i-i,
then gon throw yo hands in the sky-i-i,
If people jealous cuz you live yo li-i-ife,
then gon throw yo hands in the sky-i-i,
see I aint even worried bout you and your insecurities,
the only thing that matters is my family and G.O.D.
I’m a shooting star but my feet still on the ground
and when you flying high people wanna shoot you down
I’m like a jet airplane,
I’m way too high to hear you throwing salt on my name.
I know I’m not the only one if people love to hate
You go and throw your hands up
go ahead and spread your wings
cuz you gotta fly above.
I fly above all the drama,
I I fly above, I I fly above, I I fly above,
It’s beneath me, it’s beneath me, it’s beneath me.
So I fly above all the haters,
I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me
All you haters (haters),
You’re the wind beneath my wings (wind beneath my wings),
you just make me fly higher (higher), higher (higher), higher,
oh you just make me fly higher, make me fly higher, make me fly higher
I’m like a jet airplane,
way too high to hear you throwing salt on my name.
I know I’m not the only one if people love to hate
you gon and throw your hands up
go ahead and spread your wings
cuz you gotta fly above.
I fly above all the drama,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me.
So I fly above all the haters,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me
“Fly Above:”
I’m so comfortable in the skin I’m in,
I’m secure about who I am,
so you go ahead and talk all you wanna,
I built up a shell and it’s hard and it’s armored.
It seems like every step I take up,
drama comes along with the bread I cake up.
But you aint doing nothin if you don’t have haters,
so I welcome you to do what’s in your nature.
I'm like a jet airplane,
way too high to hear you throwing salt on my name.
I know I’m not the only one
if people love to hate you
go and throw your hands up
go ahead and spread your wings
cuz you gotta fly above.
I fly above all the drama,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me.
So I fly above all the haters,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me
If everybody hatin’ cuz you fly-i-i,
then gon throw yo hands in the sky-i-i,
If people jealous cuz you live yo li-i-ife,
then gon throw yo hands in the sky-i-i,
see I aint even worried bout you and your insecurities,
the only thing that matters is my family and G.O.D.
I’m a shooting star but my feet still on the ground
and when you flying high people wanna shoot you down
I’m like a jet airplane,
I’m way too high to hear you throwing salt on my name.
I know I’m not the only one if people love to hate
You go and throw your hands up
go ahead and spread your wings
cuz you gotta fly above.
I fly above all the drama,
I I fly above, I I fly above, I I fly above,
It’s beneath me, it’s beneath me, it’s beneath me.
So I fly above all the haters,
I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me
All you haters (haters),
You’re the wind beneath my wings (wind beneath my wings),
you just make me fly higher (higher), higher (higher), higher,
oh you just make me fly higher, make me fly higher, make me fly higher
I’m like a jet airplane,
way too high to hear you throwing salt on my name.
I know I’m not the only one if people love to hate
you gon and throw your hands up
go ahead and spread your wings
cuz you gotta fly above.
I fly above all the drama,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me.
So I fly above all the haters,
I I fly above, I I fly above, I I fly above,
it’s beneath me, it’s beneath me, it’s beneath me
Thursday, October 8, 2009
My beloved Tom
We helped a friend move this past Sunday and Tuesday Tom's back started hurting him so we really didn't do anything that day. Yesterday Tom was supposed to go back to work after his 3 day off time but took a sick day. Today his boss needs him in so I just packed his lunch and sent him off to work. I am hoping he will be okay, his back did seem to be a bit better today.
He does so much for me and I am the type of person I might smother him a bit too much if he does not feel well or something, I am always asking how he is feeling, can I get him anything, should I shift the pillows a bit, does he want to sit up if he's laying down, or lay down if he's sitting up. I hope he's okay with all that, it's my empathy side and I can't help it, I love him so much and he is such a wonderful man I want to make his life the best and happiest it can be and he does so very much for me.
Me, side effects have subsided so hopefully will stay that way at least until chemo treatment on the 12th.
On another note, the neighbor Tom filed a restraining order against was served with it yesterday but the night before he had once again watched us from the old biddies apartment and then came out and made derogatory, inflammatory and harassing comments. I wrote down all he did and said and made a copy of it for the apartment manager and gave it to her and also put a copy in the file Tom is taking to the court on the 15th of this month for the permanent restraining order hearing.
I also wrote out my testimony as my name is with Tom's as petitioner on the restraining order but because I get chemo treatment again this coming Monday and the hearing is on Thursday "in case" I cannot go Tom will take my statement with him.
One of the neighbors that witnessed the harassment and threats said although she has moved out (she is the one we helped move and is 7 months pregnant) said she will also write a statement for Tom to take to court.
The other neighbor that witnessed it I asked Tom about asking him to either go to court with Tom or write a statement but I don't think the man will do it because even though he professes "Tom is like a brother to him" and "He'd do anything for Tom" him going to court or writing a statement will mean he will have to "get off the fence" he is sitting on and take a side and since he is friends with all those who harass us and even the man who threatened Tom I don't think he has the guts to stand up for his "best friend"
Oh well, I already know what type of person he is and even though we talk to him and have coffee with him down by the pool when he does come out sometimes in the morning, I tell him what "I" want him to know and nothing else as I know it all goes to the other neighbors and he .gossips about if not Tom then about me as it seems even though Tom is like a brother and he'd stand up for him I don't mean anything (Rolls my eyes)
So here I sit down by the pool, nice calm cool day and quiet typing and reading, I found out my computer has a webcam on it and how to work it AND built in microphone capabilities so I have this and my pad of paper and pen standing by "in case" the restrained person comes home from work and starts chit. (How sad is this world when I have done nothing to anyone and yet am harassed and not only me but Tom, who lived here and was friends with everyone before I moved in and stood up for myself when they started talking behind my back and said I was lying about having cancer, not good enough for Tom etc, etc????)
Shakes my head, oh well, anyways going to do some research on the web then type a bit on the colon cancer website. So will talk to you all later and hope you are having a great and wonderful day.......
He does so much for me and I am the type of person I might smother him a bit too much if he does not feel well or something, I am always asking how he is feeling, can I get him anything, should I shift the pillows a bit, does he want to sit up if he's laying down, or lay down if he's sitting up. I hope he's okay with all that, it's my empathy side and I can't help it, I love him so much and he is such a wonderful man I want to make his life the best and happiest it can be and he does so very much for me.
Me, side effects have subsided so hopefully will stay that way at least until chemo treatment on the 12th.
On another note, the neighbor Tom filed a restraining order against was served with it yesterday but the night before he had once again watched us from the old biddies apartment and then came out and made derogatory, inflammatory and harassing comments. I wrote down all he did and said and made a copy of it for the apartment manager and gave it to her and also put a copy in the file Tom is taking to the court on the 15th of this month for the permanent restraining order hearing.
I also wrote out my testimony as my name is with Tom's as petitioner on the restraining order but because I get chemo treatment again this coming Monday and the hearing is on Thursday "in case" I cannot go Tom will take my statement with him.
One of the neighbors that witnessed the harassment and threats said although she has moved out (she is the one we helped move and is 7 months pregnant) said she will also write a statement for Tom to take to court.
The other neighbor that witnessed it I asked Tom about asking him to either go to court with Tom or write a statement but I don't think the man will do it because even though he professes "Tom is like a brother to him" and "He'd do anything for Tom" him going to court or writing a statement will mean he will have to "get off the fence" he is sitting on and take a side and since he is friends with all those who harass us and even the man who threatened Tom I don't think he has the guts to stand up for his "best friend"
Oh well, I already know what type of person he is and even though we talk to him and have coffee with him down by the pool when he does come out sometimes in the morning, I tell him what "I" want him to know and nothing else as I know it all goes to the other neighbors and he .gossips about if not Tom then about me as it seems even though Tom is like a brother and he'd stand up for him I don't mean anything (Rolls my eyes)
So here I sit down by the pool, nice calm cool day and quiet typing and reading, I found out my computer has a webcam on it and how to work it AND built in microphone capabilities so I have this and my pad of paper and pen standing by "in case" the restrained person comes home from work and starts chit. (How sad is this world when I have done nothing to anyone and yet am harassed and not only me but Tom, who lived here and was friends with everyone before I moved in and stood up for myself when they started talking behind my back and said I was lying about having cancer, not good enough for Tom etc, etc????)
Shakes my head, oh well, anyways going to do some research on the web then type a bit on the colon cancer website. So will talk to you all later and hope you are having a great and wonderful day.......
Monday, October 5, 2009
Meeting with Oncologist and blood work
So I go in today and get the blood work done from the port (have I raved yet how MUCH I love this port? (grins)
Then in to see my Oncologist, he says white blood cell count and platelet counts are fine, blood pressure a teeny bit high (it has been the last couple of times but must not be too high or worrisome) and we will see the results of the CEA from today next Monday when I go in to do my 3rd session of chemotherapy.
Diarrhea is starting to get on my nerves, but if it doesn't get any worse I can deal with it, heck I don't really have a choice except to get the Dr. to prescribe something if it gets worse so we shall see.
Other than diarrhea and a bit of fatigue am fine, tooth stopped hurting so guess the antibiotics helped.
Will update during the week as side effects come and go and I get ready for my next chemo session on Monday but today I ask you all to focus good and healing thoughts on my youngest son Will. He is in Florida and going through a trying time and illness (not my story or place to tell it so will leave it at he really really means the world to me as does my oldest son but Will, well he is special to me and my heart hurts for him right now so please any healing thoughts, prayers or words would be appreciated.
Talk to you again soon ................................
Then in to see my Oncologist, he says white blood cell count and platelet counts are fine, blood pressure a teeny bit high (it has been the last couple of times but must not be too high or worrisome) and we will see the results of the CEA from today next Monday when I go in to do my 3rd session of chemotherapy.
Diarrhea is starting to get on my nerves, but if it doesn't get any worse I can deal with it, heck I don't really have a choice except to get the Dr. to prescribe something if it gets worse so we shall see.
Other than diarrhea and a bit of fatigue am fine, tooth stopped hurting so guess the antibiotics helped.
Will update during the week as side effects come and go and I get ready for my next chemo session on Monday but today I ask you all to focus good and healing thoughts on my youngest son Will. He is in Florida and going through a trying time and illness (not my story or place to tell it so will leave it at he really really means the world to me as does my oldest son but Will, well he is special to me and my heart hurts for him right now so please any healing thoughts, prayers or words would be appreciated.
Talk to you again soon ................................
Saturday, October 3, 2009
Joys of side effects............. not!
Oh the joys of chemotherapy side effects, so now I am awake, feeling better, not as lethargic, down by the pool drinking coffee, I cough and what happens? Diarrhea city! ARGH!
Okay will write later, went upstairs and cleaned up and am downstairs again ...........
Looks like I am on the upswing from side effects, no more diarrhea after this morning, a hell of a mood swing hit me though and I had a crying jag. But have settled down and am feeling a lot better, so we shall see what the Dr. has to say on Monday.
We have to go grocery shopping after the Dr's visit and go to Babies R Us to buy a stroller for a friend for her baby shower.
Will update good and bad in between but will up date at the latest on the Dr's visit. Have been taken it slow doing housework today and have been watching Bravo's "Housewives of Atlanta" he he he
Take care all .................................
Okay will write later, went upstairs and cleaned up and am downstairs again ...........
Looks like I am on the upswing from side effects, no more diarrhea after this morning, a hell of a mood swing hit me though and I had a crying jag. But have settled down and am feeling a lot better, so we shall see what the Dr. has to say on Monday.
We have to go grocery shopping after the Dr's visit and go to Babies R Us to buy a stroller for a friend for her baby shower.
Will update good and bad in between but will up date at the latest on the Dr's visit. Have been taken it slow doing housework today and have been watching Bravo's "Housewives of Atlanta" he he he
Take care all .................................
Friday, October 2, 2009
Night and Day from Hell
Okay so maybe it's not the side effects or maybe it is but I feel like pure crap; my head hurts, my stomach hurts, my back hurts, my tooth hurts. I don't remember Tom coming home from work again and have no idea what he ate for dinner (Okay so am I slipping into bad girlfriend mode cause I can't wake up and have no energy to move?)
This morning the cats, well Kelly to be exact jumped all over me in an effort to get someone to get up and feed them, finally moaning I rolled out of bed and made it to the bathroom in time to avoid an accident and Tom fed the cats. We are downstairs and drinking coffee but don't think I will be down here too long. It feels like I haven't slept in a year and yet that is all I have done for the past two days is sleep.
Maybe today will be a better day, just stay in bed, get my energy back and start on the down slope of side effects which really except for the fatigue haven't been bad at all.
Right now I am in a sucky mood though, I can't get comfortable and don't know what I want I just know I am on the verge of tears, tired and scared.
Please think of me today. someone ........................
This morning the cats, well Kelly to be exact jumped all over me in an effort to get someone to get up and feed them, finally moaning I rolled out of bed and made it to the bathroom in time to avoid an accident and Tom fed the cats. We are downstairs and drinking coffee but don't think I will be down here too long. It feels like I haven't slept in a year and yet that is all I have done for the past two days is sleep.
Maybe today will be a better day, just stay in bed, get my energy back and start on the down slope of side effects which really except for the fatigue haven't been bad at all.
Right now I am in a sucky mood though, I can't get comfortable and don't know what I want I just know I am on the verge of tears, tired and scared.
Please think of me today. someone ........................
Thursday, October 1, 2009
So so tired
Yesterday and today it is like I have no energy at all, I spent most of yesterday afternoon and night in bed, sleeping off and on, didn't even realize when Tom got home from work and he had to forage for himself for dinner.
Today I woke up and fed the cats, got the dishes together and set them in the sink and made coffee, went downstairs by the pool and read the paper then Tom came down and a couple neighbors came over and sat with us talking.
Soon though I was exhausted and we came back upstairs. Tom had eaten a plate of food one of our neighbors had given him so I quickly microwaved a Jimmy Dean egg/sausage/cheese biscuit and ate it then laid down and was out like a light in Tom's arms while he watched T.V.
He got his lunch together and headed out to work and I went back to sleep, woke up a few times but only to turn over and go back to sleep. It's like I cannot get enough sleep, I am tired and no matter how much I sleep I am still tired.
So, watching The Real Housewives of Atlanta on Bravo while I type this but going to lay down again in a minute and go back to sleep.
I feel a bit guilty that I am not getting anything done, but I know I also need to take a day now and then for myself so I guess yesterday and today are my days.
Will write more later ........................................
Today I woke up and fed the cats, got the dishes together and set them in the sink and made coffee, went downstairs by the pool and read the paper then Tom came down and a couple neighbors came over and sat with us talking.
Soon though I was exhausted and we came back upstairs. Tom had eaten a plate of food one of our neighbors had given him so I quickly microwaved a Jimmy Dean egg/sausage/cheese biscuit and ate it then laid down and was out like a light in Tom's arms while he watched T.V.
He got his lunch together and headed out to work and I went back to sleep, woke up a few times but only to turn over and go back to sleep. It's like I cannot get enough sleep, I am tired and no matter how much I sleep I am still tired.
So, watching The Real Housewives of Atlanta on Bravo while I type this but going to lay down again in a minute and go back to sleep.
I feel a bit guilty that I am not getting anything done, but I know I also need to take a day now and then for myself so I guess yesterday and today are my days.
Will write more later ........................................
Wednesday, September 30, 2009
Chemotherapy on 9/28/2009
Getting used to the routine already, Tom and I went to the Chemotherapy Cancer Treatment center and first had my blood drawn through the port, then with the tube left in went to see Michelle (another of Dr. Clune's PA's as Kristin wasn't there) She had the prescription for my cough medicine ready and answered some more questions I had come up with (Can I take a multi daily vitamin? Yes, When will they do another PET scan to see if the mets to liver and lungs have shrunk at all? About the end of the sixth treatment session (3 months so two more months to go, etc)
Then off to the day treatment room, we brought the lap top and Tom and I watched a couple of hours of Grey's Anatomy during my chemotherapy, didn't get a room with a bathroom attached as they were full so again many trips to the bathroom.
Didn't go to sleep this time, stayed awake and alert, once again when they inject the Avastin got a hot flash and sweats but it didn't last long.
Then had the pump attached and go back on Weds (Today) to have it removed. No side effects so far except for feeling very very tired. and emotional.
I am developing "chemo brain" though as I am forgetting things and even words used to describe things. It's frustrating but am told it will get worse and just have to learn to work around it.
Today is a busy day for Tom, this morning he will get up at 7am and go to civil court to get a restraining order against the pig of a neighbor who being a drunk is escalating his harassment of Tom and I ,the dude even tried to get Tom to fight him; Tom = 6' tall, 320 lbs of pure muscle and the other dude 5'9" and about
190 lbs, uh yeah right LOL.
Tom complained to the Apt Manger who called her home office, they told her to have us fill out a form for a copy in the office, then another she will give to the sheriffs department. The sheriffs dept Tom talked to gave him an incidence report number and told us to file a restraining order (yes it is that bad, the harassment is intolerable now and has me in tears half the time and Tom is feeling his temper starting to get the best of him so for the best of all involved Tom is getting the restraining order as we both feel the next step might be physical violence. All this childishness and hatred over my standing up to an old busy body (shakes my head)
Then Tom has to come get me, take me to the Chemotherapy treatment and have them disconnect the pump. Then drop me off at home grab his lunch and head out for work.
I think I'll make his favorite, chicken and dumplings for dinner when He gets home about 1am to show how grateful I am to him for everything and for how much I love him.
Okay will write later when get back from the Dr.
P.S. Called Target Pharmacy about the chantrix prescription, they are STILL working to have it go through Medi-Cal so I just have to wait.
P.S.S They did not have my latest CEA numbers on Monday so hopefully today they will, also the cough medicine; Tussin seems to be working a bit better than the over the counter one, cough is not so "barkish" and is not hurting my chest or sides but boy does that narcotic hit me hard, I am nodding out during TV at night although as still waking up way early in the morning so am headed back to bed to snuggle with Tom till he has to get up and go to the court.
Hugs all around ...................................
So got back from the Dr. and it's 1:56 pm. Pump was all done, the needle withdrawn smoothly after flushing the line with saline solution and then heparin.
My CEA from 9/21/09 is 409 which means it has gone up, I am a bit scared but the Dr. says that sometimes it will spike before beginning to drop so we shall see.
Next Monday I go again for the appointment to discuss things with my Oncologist and get blood drawn then the Monday after is my third chemotherapy treatment. No side effects with this one so far.
Also Tom got the restraining order against the neighbor filed and we have to go to court on 10/15/09 to see if it stays permanent, but right now we got the orders for him not to harass, annoy, touch, attack, etc and to stay 20 yards away from Tom and myself.
So this will either end the stupid stuff with the neighbors or send the guy postal. Let's all pray the drama just ends and life goes on.
So until next time, God bless and have a great and wonderful day everyone..................
Then off to the day treatment room, we brought the lap top and Tom and I watched a couple of hours of Grey's Anatomy during my chemotherapy, didn't get a room with a bathroom attached as they were full so again many trips to the bathroom.
Didn't go to sleep this time, stayed awake and alert, once again when they inject the Avastin got a hot flash and sweats but it didn't last long.
Then had the pump attached and go back on Weds (Today) to have it removed. No side effects so far except for feeling very very tired. and emotional.
I am developing "chemo brain" though as I am forgetting things and even words used to describe things. It's frustrating but am told it will get worse and just have to learn to work around it.
Today is a busy day for Tom, this morning he will get up at 7am and go to civil court to get a restraining order against the pig of a neighbor who being a drunk is escalating his harassment of Tom and I ,the dude even tried to get Tom to fight him; Tom = 6' tall, 320 lbs of pure muscle and the other dude 5'9" and about
190 lbs, uh yeah right LOL.
Tom complained to the Apt Manger who called her home office, they told her to have us fill out a form for a copy in the office, then another she will give to the sheriffs department. The sheriffs dept Tom talked to gave him an incidence report number and told us to file a restraining order (yes it is that bad, the harassment is intolerable now and has me in tears half the time and Tom is feeling his temper starting to get the best of him so for the best of all involved Tom is getting the restraining order as we both feel the next step might be physical violence. All this childishness and hatred over my standing up to an old busy body (shakes my head)
Then Tom has to come get me, take me to the Chemotherapy treatment and have them disconnect the pump. Then drop me off at home grab his lunch and head out for work.
I think I'll make his favorite, chicken and dumplings for dinner when He gets home about 1am to show how grateful I am to him for everything and for how much I love him.
Okay will write later when get back from the Dr.
P.S. Called Target Pharmacy about the chantrix prescription, they are STILL working to have it go through Medi-Cal so I just have to wait.
P.S.S They did not have my latest CEA numbers on Monday so hopefully today they will, also the cough medicine; Tussin seems to be working a bit better than the over the counter one, cough is not so "barkish" and is not hurting my chest or sides but boy does that narcotic hit me hard, I am nodding out during TV at night although as still waking up way early in the morning so am headed back to bed to snuggle with Tom till he has to get up and go to the court.
Hugs all around ...................................
So got back from the Dr. and it's 1:56 pm. Pump was all done, the needle withdrawn smoothly after flushing the line with saline solution and then heparin.
My CEA from 9/21/09 is 409 which means it has gone up, I am a bit scared but the Dr. says that sometimes it will spike before beginning to drop so we shall see.
Next Monday I go again for the appointment to discuss things with my Oncologist and get blood drawn then the Monday after is my third chemotherapy treatment. No side effects with this one so far.
Also Tom got the restraining order against the neighbor filed and we have to go to court on 10/15/09 to see if it stays permanent, but right now we got the orders for him not to harass, annoy, touch, attack, etc and to stay 20 yards away from Tom and myself.
So this will either end the stupid stuff with the neighbors or send the guy postal. Let's all pray the drama just ends and life goes on.
So until next time, God bless and have a great and wonderful day everyone..................
Sunday, September 27, 2009
A great night with one little minor annyoance
So, we got dressed up and headed out for out night with Kathy Griffith.
It was a wonderful night, she is such a great comedian and puts on a heck of a show, we didn't stop laughing and she really put out a great performance. Our seats were perfect, 11 rows back and 7 seats in, absolutely perfect. This is what Tom and I do, we do things togeather; Sea World, The San Diego Zoo, The Wild Animal Park, Disney Land, Mystery Dinner Theatre, Movies, Medevil Times, Concerts, Plays, Shows, and I am so thankful to Tom for being in my life and doing these things with me, even if I only have a year or two left, I can say that my life with him has been the best and greatest of my life.
Then we decided to head to Denny's ("our" place (inside joke but yes it is our place) and we get there and go in.
Well, the "neighbors" that are (allegedlly) meth heads and (actually) drunks and harass me at our complex were there and they started making comments and "MOOOOing" at me. It hurt me and took me awhile to get over. (and seriously okay I am 230 right now but one of their girlfriends is bigger than me and the other one is getting bigger and still dresses like the S word but ................................)
I am trying to follow Tom's philosophy of pacifism and ignoring that stuff but it still hurts and I find myself getting hurt that Tom doesn't stand up for me. BUT I was determined not to let it spoil our evening so I pushed past it and we ate, came home and cuddled in bed watching TV till we fell asleep.
Oh btw the I took a vicodin for my tooth before we left for the show and let me tell you that was an experience, I think I was high LOL
Okay tomorrows second chemotherapy treatment so today is relax by the pool, watch football and play my Sims 2 on the computer.
Have a great and wonderful day everyone and will update after the chemotherapy..... God Bless
It was a wonderful night, she is such a great comedian and puts on a heck of a show, we didn't stop laughing and she really put out a great performance. Our seats were perfect, 11 rows back and 7 seats in, absolutely perfect. This is what Tom and I do, we do things togeather; Sea World, The San Diego Zoo, The Wild Animal Park, Disney Land, Mystery Dinner Theatre, Movies, Medevil Times, Concerts, Plays, Shows, and I am so thankful to Tom for being in my life and doing these things with me, even if I only have a year or two left, I can say that my life with him has been the best and greatest of my life.
Then we decided to head to Denny's ("our" place (inside joke but yes it is our place) and we get there and go in.
Well, the "neighbors" that are (allegedlly) meth heads and (actually) drunks and harass me at our complex were there and they started making comments and "MOOOOing" at me. It hurt me and took me awhile to get over. (and seriously okay I am 230 right now but one of their girlfriends is bigger than me and the other one is getting bigger and still dresses like the S word but ................................)
I am trying to follow Tom's philosophy of pacifism and ignoring that stuff but it still hurts and I find myself getting hurt that Tom doesn't stand up for me. BUT I was determined not to let it spoil our evening so I pushed past it and we ate, came home and cuddled in bed watching TV till we fell asleep.
Oh btw the I took a vicodin for my tooth before we left for the show and let me tell you that was an experience, I think I was high LOL
Okay tomorrows second chemotherapy treatment so today is relax by the pool, watch football and play my Sims 2 on the computer.
Have a great and wonderful day everyone and will update after the chemotherapy..... God Bless
Thursday, September 24, 2009
Questions asked and answered received
Had to call my Oncologist today for a couple of questions.
First I have a tooth that really has been bad for years, I just never took care of it (I know I know your supposed to take care of all these things before you start chemo, but I am a "last minute go to the dentist" and it wasn't bothering me sooooo......)
Anyways the tooth doesn't really hurt, just a bit of pressure and is annoying so I called my Oncologist and the PA said she would prefer that I not have anything done to it unless it is absolutely crucially necessary because of the Avastin I am on. If it gets infected or really hurts they will put me on antibiotics and pain killers until such time it may be feasible for me to get it taken care of.
The next item is back in 2004 I had a bladder lift (my bladder had dropped slightly and I had ummm leaks when I laughed or coughed and accidents at night) at the time the surgeon told me somewhere down the line I "might" have to have it redone.
Fast forward to now, I am having leaks when I cough and laugh and not just a little and accidents in bed. Now at one time in between 2004 and now I had a month or so with little leaks and my Dr. prescribed Detrol that seemed to work.
I go back in on this coming Monday to see my Oncologist and then to get my second chemotherapy session.
And was going to ask the Dr. about this but was wondering should I ask for Detrol or for a referral to a urologist to to see if it's time for another bladder lift (Can I have this type of surgery while having chemotherapy?)
Well Kristin the PA said NO NO NO NO NO NO NO NO NO about surgery while on Avastin, she is phoning in a prescription (the lightest dose) of Detrol for me and we shall see how that works.
Also Monday when I go in to see her and do my second chemotherapy session she is going to give me a narcotic cough medicine prescription as the over the counter stuff isn't touching my cough.
Oh and I called my pharmacy about the Chantrix prescription. They got the certificate fax from 1-800-NO-BUTTS so are going through my Oncologist to get another preauthorization and resubmit the prescription to my insurance again, so about another week ~ The pharmacist told me to come in tomorrow morning and he is going to give me half of a starter pack to start me off "under the table" as he is very concerned about my smoking while undergoing chemotherapy, very cool guy and very very sympathetic to the insurance run around.
All in all, everyone from my Oncologist to the Kristin the PA to the staff at the cancer treatment center to the pharmacists are all so wonderful I feel blessed to know these people and glad to have started my treatment.
Oh and one more thing ~ This Saturday night Tom and I are going to see Kathy Griffin here in San Diego (GRINS) I am so glad it's before I start my 2nd chemotherapy treatment and am sure it will be a wonderful night, will write here and tell you all, all about it.
On a more somber note, one of my online friends from a role playing room just lost her husband at 4:30am this morning to complications from a serious internal infection, my thoughts and prayers have been with her all this day.
Well got my question answered, nope no bladder lift surgery allowed while on Avastin,
P.S Got a prescription for antibiotics and a pain killer I will pick up tomorrow for the toothache,.my Dr. did give me a prescription for Detrol the lowest dose of it. Hopefully this will help the "leakage" issue.
I love my Oncologist Dr. Clune at Grossmont and his PA Kristin.
Oh also I have to give kudos to Target pharmacy. I am still having problems getting my Chantex prescription through my insurance (hopefully by Tuesday) The pharmacist called me and told me to come in and get enough of the starter pills to last me till tuesday, free of charge.
There are wonderful people in this world (God bless them)
Take care and God bless and I'll post again soon...........................................
P.S
First I have a tooth that really has been bad for years, I just never took care of it (I know I know your supposed to take care of all these things before you start chemo, but I am a "last minute go to the dentist" and it wasn't bothering me sooooo......)
Anyways the tooth doesn't really hurt, just a bit of pressure and is annoying so I called my Oncologist and the PA said she would prefer that I not have anything done to it unless it is absolutely crucially necessary because of the Avastin I am on. If it gets infected or really hurts they will put me on antibiotics and pain killers until such time it may be feasible for me to get it taken care of.
The next item is back in 2004 I had a bladder lift (my bladder had dropped slightly and I had ummm leaks when I laughed or coughed and accidents at night) at the time the surgeon told me somewhere down the line I "might" have to have it redone.
Fast forward to now, I am having leaks when I cough and laugh and not just a little and accidents in bed. Now at one time in between 2004 and now I had a month or so with little leaks and my Dr. prescribed Detrol that seemed to work.
I go back in on this coming Monday to see my Oncologist and then to get my second chemotherapy session.
And was going to ask the Dr. about this but was wondering should I ask for Detrol or for a referral to a urologist to to see if it's time for another bladder lift (Can I have this type of surgery while having chemotherapy?)
Well Kristin the PA said NO NO NO NO NO NO NO NO NO about surgery while on Avastin, she is phoning in a prescription (the lightest dose) of Detrol for me and we shall see how that works.
Also Monday when I go in to see her and do my second chemotherapy session she is going to give me a narcotic cough medicine prescription as the over the counter stuff isn't touching my cough.
Oh and I called my pharmacy about the Chantrix prescription. They got the certificate fax from 1-800-NO-BUTTS so are going through my Oncologist to get another preauthorization and resubmit the prescription to my insurance again, so about another week ~ The pharmacist told me to come in tomorrow morning and he is going to give me half of a starter pack to start me off "under the table" as he is very concerned about my smoking while undergoing chemotherapy, very cool guy and very very sympathetic to the insurance run around.
All in all, everyone from my Oncologist to the Kristin the PA to the staff at the cancer treatment center to the pharmacists are all so wonderful I feel blessed to know these people and glad to have started my treatment.
Oh and one more thing ~ This Saturday night Tom and I are going to see Kathy Griffin here in San Diego (GRINS) I am so glad it's before I start my 2nd chemotherapy treatment and am sure it will be a wonderful night, will write here and tell you all, all about it.
On a more somber note, one of my online friends from a role playing room just lost her husband at 4:30am this morning to complications from a serious internal infection, my thoughts and prayers have been with her all this day.
Well got my question answered, nope no bladder lift surgery allowed while on Avastin,
P.S Got a prescription for antibiotics and a pain killer I will pick up tomorrow for the toothache,.my Dr. did give me a prescription for Detrol the lowest dose of it. Hopefully this will help the "leakage" issue.
I love my Oncologist Dr. Clune at Grossmont and his PA Kristin.
Oh also I have to give kudos to Target pharmacy. I am still having problems getting my Chantex prescription through my insurance (hopefully by Tuesday) The pharmacist called me and told me to come in and get enough of the starter pills to last me till tuesday, free of charge.
There are wonderful people in this world (God bless them)
Take care and God bless and I'll post again soon...........................................
P.S
Tuesday, September 22, 2009
Oncologist's Visit and some thoughts
The Oncologist visit yesterday really really surprised me. First I checked in then because I had my port I didn't go to the usual room to have my blood drawn, Tom and I went to the day treatment room and signed in. Pretty soon I was called and one of the nurses examined my port then cleansed it with the small round delicate sponge on a stick that had some disinfectant on it. Next she sprayed the area with this numbing solution, that stung a little bit and she said when it stung it let her know that the area was numb.
Next she took a needle attached to tubing and settled it in my port. No pain like from a usual needle stick to the arm or hand, just pressure like someone pressing their finger against your skin. Immediately she got the blood to draw and filled 8 tubes then flushed the line and port with saline and something that helps to keep the port from clogging (as usual with saline I got the medicinal taste in my throat) withdrew the needle, put a gauze square and tape on it and that was that.
Then Tom and I went over to the Oncologist side and I got weighed (gained 2 pounds) then saw Kristin again. She answered all my questions, told me if the pain in my ribs got worse or I just felt I needed something to call and they would phone in a mild pain reliever. Also told me to get Robitussin DM for my cough, I hated to tell her it wouldn't work, but hey, maybe this time it will, so will try it and then report back to her. My lungs are clear, no ascites, and my white blood count and platelets are right where they should be. So, an appointment made for the 28th to see her again, get my results of the CEA counts and do my second session of chemo.
Tom and I then went grocery shopping and spent a couple hours. I noticed toward the end my lower belly (under a roll of fat (hate to admit that) wasn't feeling all that hot, kind of irritated you know? Came home, put away groceries, had a late lunch then went in the bathroom and looked ~ OMG the worst possible heat rash whatever, ever! Raw, red and slightly damp, I called my Oncologist and the receptionist said she would have him call me back. He did and he said clean it well, dry it well and he was calling in a prescription for me for a powder to put on it and keep it dry. He said he sees it a lot at this time of year in Southern California where skin meets skin. It's a slight fungal infection, looks worse that it is and just keep it clean and dry.
So off we go to the pharmacy where I get this small bottle of an anti fungal medication I have to put on the area 3 times a day.
Tom and I stayed up a long time at night and I had taken a 5mg Valium as I had gotten anxious when I first saw my lower abdomen. So we watched DVDs of Grey's Anatomy and then went to sleep. I wake up at 5:30 am and have had a small accident in bed again, I got up, cleaned it up and put a towel over the spot and laid down, in about an hour I'll take a shower (it's 6:20 and Tom is sleeping and I don't want to wake him up) then dry myself off and put on the powder on my lower abdomen. And when Tom gets up I'll wash the coverlet and sheets.
I am going to have to stop drinking juice and ginger ale and water after say 9pm when I take a Valium as this is the second time this has happened, both small incidences but embarrassing nonetheless.
On a good note we went to the 99 cent store the other day and I bought a plastic champagne flute and some black fake roses with glitter on the top edges of the petals. Last night when we got my prescription we stopped at Michael's and I bought some glass stones (red hearts, oval clear and frosted ones too) and a bottle of clear glue. The glue was Tom's idea. I crafted! (grins)
We went down by the pool and I cleaned the glass and then arranged the glass stones and the black fake roses in it and poured the glue in until it seeped was down and through and around the stones and then filled the champagne plastic flute up. It looks so pretty!! With Tom's idea and my talent (grin) we did a craft together and it worked out well.
Next she took a needle attached to tubing and settled it in my port. No pain like from a usual needle stick to the arm or hand, just pressure like someone pressing their finger against your skin. Immediately she got the blood to draw and filled 8 tubes then flushed the line and port with saline and something that helps to keep the port from clogging (as usual with saline I got the medicinal taste in my throat) withdrew the needle, put a gauze square and tape on it and that was that.
Then Tom and I went over to the Oncologist side and I got weighed (gained 2 pounds) then saw Kristin again. She answered all my questions, told me if the pain in my ribs got worse or I just felt I needed something to call and they would phone in a mild pain reliever. Also told me to get Robitussin DM for my cough, I hated to tell her it wouldn't work, but hey, maybe this time it will, so will try it and then report back to her. My lungs are clear, no ascites, and my white blood count and platelets are right where they should be. So, an appointment made for the 28th to see her again, get my results of the CEA counts and do my second session of chemo.
Tom and I then went grocery shopping and spent a couple hours. I noticed toward the end my lower belly (under a roll of fat (hate to admit that) wasn't feeling all that hot, kind of irritated you know? Came home, put away groceries, had a late lunch then went in the bathroom and looked ~ OMG the worst possible heat rash whatever, ever! Raw, red and slightly damp, I called my Oncologist and the receptionist said she would have him call me back. He did and he said clean it well, dry it well and he was calling in a prescription for me for a powder to put on it and keep it dry. He said he sees it a lot at this time of year in Southern California where skin meets skin. It's a slight fungal infection, looks worse that it is and just keep it clean and dry.
So off we go to the pharmacy where I get this small bottle of an anti fungal medication I have to put on the area 3 times a day.
Tom and I stayed up a long time at night and I had taken a 5mg Valium as I had gotten anxious when I first saw my lower abdomen. So we watched DVDs of Grey's Anatomy and then went to sleep. I wake up at 5:30 am and have had a small accident in bed again, I got up, cleaned it up and put a towel over the spot and laid down, in about an hour I'll take a shower (it's 6:20 and Tom is sleeping and I don't want to wake him up) then dry myself off and put on the powder on my lower abdomen. And when Tom gets up I'll wash the coverlet and sheets.
I am going to have to stop drinking juice and ginger ale and water after say 9pm when I take a Valium as this is the second time this has happened, both small incidences but embarrassing nonetheless.
On a good note we went to the 99 cent store the other day and I bought a plastic champagne flute and some black fake roses with glitter on the top edges of the petals. Last night when we got my prescription we stopped at Michael's and I bought some glass stones (red hearts, oval clear and frosted ones too) and a bottle of clear glue. The glue was Tom's idea. I crafted! (grins)
We went down by the pool and I cleaned the glass and then arranged the glass stones and the black fake roses in it and poured the glue in until it seeped was down and through and around the stones and then filled the champagne plastic flute up. It looks so pretty!! With Tom's idea and my talent (grin) we did a craft together and it worked out well.
Monday, September 21, 2009
Check up with Oncologist today and as promised my continuing saga with my neighbors
Okay, so today I go in to get my blood drawn and to see my Oncologist and talk about how my first chemotherapy session went.
I have a few questions for the Dr. re's: I am having pain in the bottom of my rib cage area, started off a few days ago kind of bad (had me crying) and then easing off till it's barely noticeable now. I thought it might be gas (embarrassing admission here ~ have had bad gas off and on since my colectomy in Sep 2008, it embarrasses me to no end when I am with Tom and it just happens. He tries to make me feel at ease and even will get me laughing and push on my stomach to make it continue (yeah we are silly like that but it's wonderful to be with someone such as he that can make me laugh even in the middle of being embarrassed) but I want to ask my Dr. about that also. I also have been having coughing spells really bad and maybe that is what is making my ribs hurt?
Have a little bit of a sore throat way in the back of my throat and been sneezing and blowing my nose lately so maybe I have a touch of a cold? All Dr's questions for today.
Side effects of the chemotherapy? Almost none, except for a bit of fatigue, the nausea and vomiting the first night (my fault I think for gorging) and a touch of nausea a day or so in between last Monday and today, and the very slightest of tingles when I touched or drank something cold that went away fast yes I can even get in the cold pool (just up to my waist in concern for my almost healed port and neck wound) with no tingles or anything and no pain in my hands or feet or loss of feeling, a bit of diarrhea once in a while but other than that there has been nothing so I am very hopeful this will continue although I know the 2nd and 3rd treatments from other peoples experiences have really been when the side effects kick in.
Okay so on to my neighbors.
I met and moved in with Tom February 8th of this year. He is a big bear of a man with a heart of gold and is seperated from his wife (his story to tell not mine but not his fault, not her fault, just happened). We live in a small apartment complex and he was friends with an elderly lady (JoAnn) and a guy who has diabetes, and all kind of other problems (Lonnie) about my age.
We had a habit of going downstairs to JoAnns to have coffee and read the paper and generally shoot the chit for a few hours each day. I made the mistake of thinking that his friends could be my friends. I was friendly, open, honest, genuinely concerned about them (there were also others that came over to JoAnns': Rich & Shanna and Bryan & Kathy)
Well everything was going fine so I thought, one day something happened and I got a bit insecure and started drinking just for that day (I used to drink a lot but not anymore in fact it's truly once in a blue moon I have even one drink) ended up telling a bit more of Tom's and my business than I should have but nothing that would make someone hate me or anything. (Tom forgave me for my insecurity and "lapse" and truly we have never had an argument or a cross word between us, he is such a wonderful man he makes my life wonderful. He is a buddhist and I try to follow his examples and his mindset of karma and such.)
Fast forward a couple of weeks and one of the girls in the complex came to me and told me that JoAnn and the "crowd" had made the statement that Tom deserved better than me and why in the world was he with me. (He was dating very beautiful and thin women before but they were users, me okay 49, a bit overweight but still I am not ugly! DUH! and I am definitely not a user, I want to make Tom's life better, happier and easier and I feel and hope that I do so in all areas, He always says He is happy with me and to me that is all that counts) this hurt my feelings and I confronted JoAnn.
Because I had the "AUDACITY" to call the old biddy on her statement and make her tell the truth about them instead of "Oh I would never say that" then talk about me behind my back. She went to the Apt. Manager and made all kinds of complaints about me (okay so when I first moved in I didn't have a bathing suit and went in the pool in a tshirt with no bra (sue me) and yes we had a key to JoAnn's place and I would bring her soda cans (she recycles) and if she was sleeping I would open the door and put them just inside her door, and yes Tom and I kiss and hug in the pool but DAMN PEOPLE come on!!!!) Tom got a letter and he confronted her and so did I.
From that day to this day JoAnn, Rich & Shanna, Bryan & Kathy go out of their way to shun me, to talk about me not to my face but behind my back but loudly enough for me to hear, and to tell everyone else to stay away from me. Lonnie talks to me and Tom and has coffee with us down by the pool in the morning but he is still friends with the others and although I would never ask him to stop being friends with them, this little feeling, you know the one, the one that knows the truth even when you would rather ignore it? tells me that he tells them any and everything Tom and I say and gossips with them about me also.
AND lately I was told blatantly that everyone thought I was lying when I said I had cancer! Why would I lie about something like that????? I just don't know about people.
I have never done anything to anyone of them except stand up to a malicious, gossipy old biddy and I get this treatment, it used to hurt and still does once in awhile especially when I hear "why doesn't she just die already?" But ..................... I have something they will never have, my love of my life, the greatest love of my life, the one who has mended me and made me a better woman, Tom. And that is all I ever need.
Okay will post more when I get back from the Dr's, have a great day everyone ..........................
I have a few questions for the Dr. re's: I am having pain in the bottom of my rib cage area, started off a few days ago kind of bad (had me crying) and then easing off till it's barely noticeable now. I thought it might be gas (embarrassing admission here ~ have had bad gas off and on since my colectomy in Sep 2008, it embarrasses me to no end when I am with Tom and it just happens. He tries to make me feel at ease and even will get me laughing and push on my stomach to make it continue (yeah we are silly like that but it's wonderful to be with someone such as he that can make me laugh even in the middle of being embarrassed) but I want to ask my Dr. about that also. I also have been having coughing spells really bad and maybe that is what is making my ribs hurt?
Have a little bit of a sore throat way in the back of my throat and been sneezing and blowing my nose lately so maybe I have a touch of a cold? All Dr's questions for today.
Side effects of the chemotherapy? Almost none, except for a bit of fatigue, the nausea and vomiting the first night (my fault I think for gorging) and a touch of nausea a day or so in between last Monday and today, and the very slightest of tingles when I touched or drank something cold that went away fast yes I can even get in the cold pool (just up to my waist in concern for my almost healed port and neck wound) with no tingles or anything and no pain in my hands or feet or loss of feeling, a bit of diarrhea once in a while but other than that there has been nothing so I am very hopeful this will continue although I know the 2nd and 3rd treatments from other peoples experiences have really been when the side effects kick in.
Okay so on to my neighbors.
I met and moved in with Tom February 8th of this year. He is a big bear of a man with a heart of gold and is seperated from his wife (his story to tell not mine but not his fault, not her fault, just happened). We live in a small apartment complex and he was friends with an elderly lady (JoAnn) and a guy who has diabetes, and all kind of other problems (Lonnie) about my age.
We had a habit of going downstairs to JoAnns to have coffee and read the paper and generally shoot the chit for a few hours each day. I made the mistake of thinking that his friends could be my friends. I was friendly, open, honest, genuinely concerned about them (there were also others that came over to JoAnns': Rich & Shanna and Bryan & Kathy)
Well everything was going fine so I thought, one day something happened and I got a bit insecure and started drinking just for that day (I used to drink a lot but not anymore in fact it's truly once in a blue moon I have even one drink) ended up telling a bit more of Tom's and my business than I should have but nothing that would make someone hate me or anything. (Tom forgave me for my insecurity and "lapse" and truly we have never had an argument or a cross word between us, he is such a wonderful man he makes my life wonderful. He is a buddhist and I try to follow his examples and his mindset of karma and such.)
Fast forward a couple of weeks and one of the girls in the complex came to me and told me that JoAnn and the "crowd" had made the statement that Tom deserved better than me and why in the world was he with me. (He was dating very beautiful and thin women before but they were users, me okay 49, a bit overweight but still I am not ugly! DUH! and I am definitely not a user, I want to make Tom's life better, happier and easier and I feel and hope that I do so in all areas, He always says He is happy with me and to me that is all that counts) this hurt my feelings and I confronted JoAnn.
Because I had the "AUDACITY" to call the old biddy on her statement and make her tell the truth about them instead of "Oh I would never say that" then talk about me behind my back. She went to the Apt. Manager and made all kinds of complaints about me (okay so when I first moved in I didn't have a bathing suit and went in the pool in a tshirt with no bra (sue me) and yes we had a key to JoAnn's place and I would bring her soda cans (she recycles) and if she was sleeping I would open the door and put them just inside her door, and yes Tom and I kiss and hug in the pool but DAMN PEOPLE come on!!!!) Tom got a letter and he confronted her and so did I.
From that day to this day JoAnn, Rich & Shanna, Bryan & Kathy go out of their way to shun me, to talk about me not to my face but behind my back but loudly enough for me to hear, and to tell everyone else to stay away from me. Lonnie talks to me and Tom and has coffee with us down by the pool in the morning but he is still friends with the others and although I would never ask him to stop being friends with them, this little feeling, you know the one, the one that knows the truth even when you would rather ignore it? tells me that he tells them any and everything Tom and I say and gossips with them about me also.
AND lately I was told blatantly that everyone thought I was lying when I said I had cancer! Why would I lie about something like that????? I just don't know about people.
I have never done anything to anyone of them except stand up to a malicious, gossipy old biddy and I get this treatment, it used to hurt and still does once in awhile especially when I hear "why doesn't she just die already?" But ..................... I have something they will never have, my love of my life, the greatest love of my life, the one who has mended me and made me a better woman, Tom. And that is all I ever need.
Okay will post more when I get back from the Dr's, have a great day everyone ..........................
Friday, September 18, 2009
A few thoughts and questions to ask my Oncologist
Well............ I have to say I am pleasantly surprised by the "lack" of side effects so far. I was expecting by now to be putting on gloves to get anything from the refrigerator, to be bundled up in a blanket at the slightest touch from the air conditioner, to have nausea and diarrhea out the (excuse the expression) wazoo.
A bit of diarrhea yesterday, a bit of a sore throat last night and I "think" terrible" gas pains. I say think because the areas were down in my lower side of my abdomen and when I passed gas the pains eased up, but it was bad enough to have me crying. (Yes I am the world's biggest wuss when it comes to pain), and a bit of a headache that went away, but no nausea, I can touch barehanded anything from the freezer or the refrigerator, put my hands in cold water etc. Just to be on the safe side am drinking room temperature drinks still but will try to today to see how a cold glass of juice from the refrigerator works.
Tom said he had a bit of diarrhea yesterday also so maybe it's something going around and not the side effects? (Okay I can deal with a cold but please, please let's not go the H1N1 route okay?)
I am as I said pleasantly surprised by the lack of side effects and yet .......................... my brain although rationally knowing that the side effects or lack thereof do NOT show a measure of how well or not the chemotherapy is working, some part of me is going "What if this cancer "I" have is the kind that does not respond to treatment? Is the lack of side effects indicative of this?" And again I know what all the books and web sites and people say that the side effects or lack of have no indication on how the cancer is responding or not but still makes ya wonder hmmmmmm? Another question for the Dr.
Oh, on the ongoing saga of Kristin (PA) prescribing me Chantix and the insurance companies not covering it. Yesterday the Dr's office called and told me to call 1-800-NO-BUTTS. I did, they walked me through a 30 minute discussion and answer session on ways to quit smoking and deal with it and are going to send my pharmacy a certificate that I went through this. The pharmacy then sends that in with the prescription (enter a code from the certificate or something) and about a week later I "should" get my Chantix. Also I can call at anytime to the number and talk to a "Counselor" and get support, suggestions, a sympathetic ear, etc while I am trying to quit. Very nice people and I suggest it for anyone trying to quit.
Tom's still sleeping and I am down by the pool so going to end this for now and read the paper, drink my coffee and wait for him to wake up. Today is laundry day so I will take it a bit slow, not try to do too much and will write again later if anything newsworthy comes up. Till later, have a great and wonderful day .......................
P.S Tom's up and down here reading the paper, he reminded me to put here how MUCH of a klutz I am LOL ~ Yesterday I bumped into the wall right at the height where my port is ~ I had to sit down and breathe for 5 full minutes before tears stopped coming to my eyes :) Note to self: BE MORE CAREFUL (as if that will help LOL)
Another note, and so much for trying "not" to do too much.
We came up to get breakfast and I made frozen pancakes and sausage for me and Tom, then started cleaning the house; doing dishes, taking up the cat food and water bowls, wiping down counters, emptying and cleaning the coffee pot and filter, taking up trash, emptying the cat litter boxes, sweeping, moping and emptying trash cans, wiping down counters and surfaces and then changed my bandages.
I need suggestions on how to ask Tom to help me with some of this and allow him to help without getting impatient when it doesn't happen right away cause the nearest I can come to describing the feelings while I am doing this and he is laying on the bed watching TV is road rage. I curse at a piece of litter that drops out of the bag, I throw the trash can out in the other room, I use the mop as a weapon, attacking the kitchen floor and banging into the refrigerator and counters. Tom has said before this behavior "scares" him.
I don't know what to do. I have always been the type of person who when something needs to be done "I" am the one who does it as if I don't it seems like it doesn't get done. By the time I was done my back was killing me, I was coughing and nauseous and upset, I didn't want Tom to hug me or anything as I was sweaty and hot and tired and not feeling well but I don't want him to think I am rebuffing him. And I still have to do make Tom's lunch, do laundry and put trash bags back in the cans and put them back along with the litter boxes, the mop and broom and such.
Any ideas, anyone?
A bit of diarrhea yesterday, a bit of a sore throat last night and I "think" terrible" gas pains. I say think because the areas were down in my lower side of my abdomen and when I passed gas the pains eased up, but it was bad enough to have me crying. (Yes I am the world's biggest wuss when it comes to pain), and a bit of a headache that went away, but no nausea, I can touch barehanded anything from the freezer or the refrigerator, put my hands in cold water etc. Just to be on the safe side am drinking room temperature drinks still but will try to today to see how a cold glass of juice from the refrigerator works.
Tom said he had a bit of diarrhea yesterday also so maybe it's something going around and not the side effects? (Okay I can deal with a cold but please, please let's not go the H1N1 route okay?)
I am as I said pleasantly surprised by the lack of side effects and yet .......................... my brain although rationally knowing that the side effects or lack thereof do NOT show a measure of how well or not the chemotherapy is working, some part of me is going "What if this cancer "I" have is the kind that does not respond to treatment? Is the lack of side effects indicative of this?" And again I know what all the books and web sites and people say that the side effects or lack of have no indication on how the cancer is responding or not but still makes ya wonder hmmmmmm? Another question for the Dr.
Oh, on the ongoing saga of Kristin (PA) prescribing me Chantix and the insurance companies not covering it. Yesterday the Dr's office called and told me to call 1-800-NO-BUTTS. I did, they walked me through a 30 minute discussion and answer session on ways to quit smoking and deal with it and are going to send my pharmacy a certificate that I went through this. The pharmacy then sends that in with the prescription (enter a code from the certificate or something) and about a week later I "should" get my Chantix. Also I can call at anytime to the number and talk to a "Counselor" and get support, suggestions, a sympathetic ear, etc while I am trying to quit. Very nice people and I suggest it for anyone trying to quit.
Tom's still sleeping and I am down by the pool so going to end this for now and read the paper, drink my coffee and wait for him to wake up. Today is laundry day so I will take it a bit slow, not try to do too much and will write again later if anything newsworthy comes up. Till later, have a great and wonderful day .......................
P.S Tom's up and down here reading the paper, he reminded me to put here how MUCH of a klutz I am LOL ~ Yesterday I bumped into the wall right at the height where my port is ~ I had to sit down and breathe for 5 full minutes before tears stopped coming to my eyes :) Note to self: BE MORE CAREFUL (as if that will help LOL)
Another note, and so much for trying "not" to do too much.
We came up to get breakfast and I made frozen pancakes and sausage for me and Tom, then started cleaning the house; doing dishes, taking up the cat food and water bowls, wiping down counters, emptying and cleaning the coffee pot and filter, taking up trash, emptying the cat litter boxes, sweeping, moping and emptying trash cans, wiping down counters and surfaces and then changed my bandages.
I need suggestions on how to ask Tom to help me with some of this and allow him to help without getting impatient when it doesn't happen right away cause the nearest I can come to describing the feelings while I am doing this and he is laying on the bed watching TV is road rage. I curse at a piece of litter that drops out of the bag, I throw the trash can out in the other room, I use the mop as a weapon, attacking the kitchen floor and banging into the refrigerator and counters. Tom has said before this behavior "scares" him.
I don't know what to do. I have always been the type of person who when something needs to be done "I" am the one who does it as if I don't it seems like it doesn't get done. By the time I was done my back was killing me, I was coughing and nauseous and upset, I didn't want Tom to hug me or anything as I was sweaty and hot and tired and not feeling well but I don't want him to think I am rebuffing him. And I still have to do make Tom's lunch, do laundry and put trash bags back in the cans and put them back along with the litter boxes, the mop and broom and such.
Any ideas, anyone?
Wednesday, September 16, 2009
Getting the pump disconnected and the dressings changed
So, last night wasn't bad, I took a Compazine "just in case" but no nausea. Of course I didn't gorge myself either LOL like I did on Monday.
I had a yogurt last night but for the life of me cannot remember what else I ate yesterday, Oh, a bagel with cream cheese I remember that in the morning, but I don't remember what I ate before the yogurt at night.
I woke up about 5am and felt a little "frisky" so cuddled up to Tom and started kissing his neck, well he was so out of it he petted my hair and went back to sleep and then I did too so rain check on that side of things I guess LOL. Woke up again about ten this morning to the regular routine of getting up, making coffee, getting cats fed, etc. Tom is helping with a lot of this and it helps so very much (nominating him for the best boyfriend ever award :)
So then went down by the pool and had coffee, read the paper and talked to Tom and two of our neighbors (the good ones, not the "started out as friends but then started chit type" (more on that one day when I can talk about it without getting pissy).
Then made Jimmy Dean sausage/egg/cheese biscuits, two for Tom one for me and some more gatorade. My staples for drinks are hot coffee with cream and sugar, gatorade, water, and ginger ale. The last three at room temperature. I still am not experiencing any neuropathy and only a slight cold sensitivity if I eat or drink anything cold. Made Tom's lunch so when we come back from the Dr. he can just grab his lunch and head out to work. It is a blessing he's off Sunday/Monday/Tuesday and goes to work later in the afternoon on the rest of the days.
The Dr's office called right before we left, neither Tri-Care or Medicare/Medi-Cal will pay for the Chantrix so the PA asked me if a prescription for the patch to quit smoking would be okay. I said sure and then we headed out to the Dr.
Got to the Dr's and waited for a bit then a nurse took me back to the day room and uncovered my port and the incision on my neck, said the pump was done and everything looked great then flushed the line on my port with saline and made sure she could draw back blood (that is very important as if they can't it can take an hour to get the port unclogged), She asked me a lot of questions and then took out the tube from my port and dressed it and redressed my neck and sent me out to wait for Kristin (The PA who was going to give me the prescription for the patch. Well Kristin got busy and Tom was running out of time to wait as he had to get to work so I went up and talked to the nurse. She checked and said Kristin would call in the prescription to Rite-Aide for me.
So we left, Tom came upstairs got his lunch, we kissed goodbye and he went off to work. I cleaned the cat's litter boxes (2 litter boxes, the girls "Kimba and Kelly" don't like sharing their litter box with my boy "Mini" so we got him one of his own). Took out the trash, cleaned up the dishes and swept the floor then came downstairs by the pool with a cigarette and Gatorade and my computer.
Did some research on a development going up across the street from us, seems it is going to be section 8, so gave our complex manager that info. Went upstairs and had diarrhea, not real bad but enough to make itself known. Felt a little "off" (heart racing a bit, fatigued, a little bit nauseous) so took a compazine and ate a dry bagel, then relaxed on the bed and watched t.v and played a few "hidden objects" games on my computer.
It's 8:22pm now and I am down by the pool writing this. It's a beautiful night, a bit of a breeze but not too chilly and except for a bit of tightness in my chest I seem to be okay.
Well that's all the news that fit to print for now, will write more either these coming days or Monday after I come back from my in between chemotherapy check up with my Dr. .......................
I had a yogurt last night but for the life of me cannot remember what else I ate yesterday, Oh, a bagel with cream cheese I remember that in the morning, but I don't remember what I ate before the yogurt at night.
I woke up about 5am and felt a little "frisky" so cuddled up to Tom and started kissing his neck, well he was so out of it he petted my hair and went back to sleep and then I did too so rain check on that side of things I guess LOL. Woke up again about ten this morning to the regular routine of getting up, making coffee, getting cats fed, etc. Tom is helping with a lot of this and it helps so very much (nominating him for the best boyfriend ever award :)
So then went down by the pool and had coffee, read the paper and talked to Tom and two of our neighbors (the good ones, not the "started out as friends but then started chit type" (more on that one day when I can talk about it without getting pissy).
Then made Jimmy Dean sausage/egg/cheese biscuits, two for Tom one for me and some more gatorade. My staples for drinks are hot coffee with cream and sugar, gatorade, water, and ginger ale. The last three at room temperature. I still am not experiencing any neuropathy and only a slight cold sensitivity if I eat or drink anything cold. Made Tom's lunch so when we come back from the Dr. he can just grab his lunch and head out to work. It is a blessing he's off Sunday/Monday/Tuesday and goes to work later in the afternoon on the rest of the days.
The Dr's office called right before we left, neither Tri-Care or Medicare/Medi-Cal will pay for the Chantrix so the PA asked me if a prescription for the patch to quit smoking would be okay. I said sure and then we headed out to the Dr.
Got to the Dr's and waited for a bit then a nurse took me back to the day room and uncovered my port and the incision on my neck, said the pump was done and everything looked great then flushed the line on my port with saline and made sure she could draw back blood (that is very important as if they can't it can take an hour to get the port unclogged), She asked me a lot of questions and then took out the tube from my port and dressed it and redressed my neck and sent me out to wait for Kristin (The PA who was going to give me the prescription for the patch. Well Kristin got busy and Tom was running out of time to wait as he had to get to work so I went up and talked to the nurse. She checked and said Kristin would call in the prescription to Rite-Aide for me.
So we left, Tom came upstairs got his lunch, we kissed goodbye and he went off to work. I cleaned the cat's litter boxes (2 litter boxes, the girls "Kimba and Kelly" don't like sharing their litter box with my boy "Mini" so we got him one of his own). Took out the trash, cleaned up the dishes and swept the floor then came downstairs by the pool with a cigarette and Gatorade and my computer.
Did some research on a development going up across the street from us, seems it is going to be section 8, so gave our complex manager that info. Went upstairs and had diarrhea, not real bad but enough to make itself known. Felt a little "off" (heart racing a bit, fatigued, a little bit nauseous) so took a compazine and ate a dry bagel, then relaxed on the bed and watched t.v and played a few "hidden objects" games on my computer.
It's 8:22pm now and I am down by the pool writing this. It's a beautiful night, a bit of a breeze but not too chilly and except for a bit of tightness in my chest I seem to be okay.
Well that's all the news that fit to print for now, will write more either these coming days or Monday after I come back from my in between chemotherapy check up with my Dr. .......................
Tuesday, September 15, 2009
Side effects from last night
Okay so maybe I was a little optimistic and a bit of a glutton yesterday and boy did I pay for it last night! Watched the Raider/Charger game and had fun, was a good game but my Raiders lost so per the bet with Tom I have to wear his chargers hat all this week and if someone mentions the Chargers I have to say "Chargers are NUMBER 1" LOL
So still was having a bit of the cold sensitivity in my mouth with cold drinks, not hurting really just like I said like static electricit on the sides of my jaw and a scratchy shard like feeling in the back of my throat.
Then the headache started, took Aleve and it didn't touch the headache. Stomache started to hurt so I took a Compazine pill for nausea just in case.
Within an hour or so I was crying and throwing up then settled down then crying and throwing up again, after that though I was able to sleep. Tom is so loving and helpful but I hate throwing up and I hate that he has to see me do so (trash can by the side of the bed as I couldn't get to the toilet) and he takes care of the cleaning up and me afterwards but I thank God for him and love him so much.
This morning everything is okay except for a bit of a headache. Had coffee down by the pool and now having bagels and cream cheese.
The pump is not a problem so far, no tangled lines, no beeping alarms, and I can carry it around or put it around my waist like a fanny pack.
So will update later today .................................
So still was having a bit of the cold sensitivity in my mouth with cold drinks, not hurting really just like I said like static electricit on the sides of my jaw and a scratchy shard like feeling in the back of my throat.
Then the headache started, took Aleve and it didn't touch the headache. Stomache started to hurt so I took a Compazine pill for nausea just in case.
Within an hour or so I was crying and throwing up then settled down then crying and throwing up again, after that though I was able to sleep. Tom is so loving and helpful but I hate throwing up and I hate that he has to see me do so (trash can by the side of the bed as I couldn't get to the toilet) and he takes care of the cleaning up and me afterwards but I thank God for him and love him so much.
This morning everything is okay except for a bit of a headache. Had coffee down by the pool and now having bagels and cream cheese.
The pump is not a problem so far, no tangled lines, no beeping alarms, and I can carry it around or put it around my waist like a fanny pack.
So will update later today .................................
Monday, September 14, 2009
Woke up to the alarm at 5:45am, Tom hit snooze and I headed for the bathroom to use it, wash my hands and face, brush my teeth and wet down my short, short hair. Then out of the bathroom to turn OFF the radio alarm clock and my phone alarm.
Fed the cats, made coffee and took my Prilosec and one 5mg Valium. Dressed in comfortable clothes and made Tom two breakfast egg, sausage and cheese biscuits.
Got together my blankie (yes blankie sue me I need comfort during this time), a tote bag with my laptop and a movie Tom wants to watch, a tote bag with books for us both and today's newspaper.
Put Tom's coffee in a travel mug and filled my purple Avastin jug with ginger ale and ice. Cleaned the cat's plates and put them in the drainer while Tom made the bed. Then I grabbed my purse and went outside to smoke (yes I am quitting but not all at once) and to wait on Tom (For me being a woman and Him being a man it takes me a hell of a lot less time to get ready than him (grins).
We hugged and kissed and got in the van and headed to the hospital.
Found the A floor in the main hospital, checked in and waited about 1/2 an hour then they called me back. Got me ready and started an IV, then had me walk in to the small operating table and gave me saline and then a cocktail of drugs for "twilight sleep" had me turn my head to the left and made a small incision in my neck, threaded the catheter into the vein and made an incision in my right chest, settled the port in place and connected the catheter then stitched the incision closed and put dressing over them. The needle and line from the port were left in so they could access it for the chemo.
Good drugs, was kind of aware sometimes but if I said even "ouch", "stings" or moaned they were right there pushing more of the drugs so no pain at all.
When I was done they wheeled me out, grabbed Tom and off we went to the Cancer Center where they ensconced me in a recliner in the main day room. Tom got me settled with a blanket and we both read while waiting. The only glitch was no one realized I was there and 45 minutes later Tom went and talked with a nurse, they found my chart and the nurse assigned to me came over and set up a IV drip of saline, then she started me on a drip of an anti-nausea medication and antibiotics and steroids and benadryl. Explaining all of them for me very well.
Tom started watching his movie on the laptop and I was soon asleep, woke up an hour later and got my pole unplugged from the wall and went to the bathroom (this was to be a recurring scene and the nurse said next time (Probably September 28th as barring my white blood cell count or platelet count going to low I will be having chemotherapy every two weeks) I will get one of the rooms with a bathroom (did I mention I have a bladder the size of a pea anyways? LOL).
Then we went on to a saline flush, then the Leucovorin (Folinic Acid), another saline flush, then the Oxaliplatin, another saline flush then the Avastin, then another saline flush and then the 5-FU by injection into the tube to the port in my chest. Then I was hooked up to the pack which will administer more 5-FU throughout 46 hours. I cannot shower during that time and have to try to be less than my klutzy self (GRINS)
Wednesday I go back at 1pm to have the pack removed and to have my dressings changed. Then on the 21st I go to have blood drawn and talk to my Dr.
During the treatment I felt a bit dizzy a few times, that went away, I had big hot flashes that started at my head and went to my toes along with accompanying sweat and I experienced a bit of the shock in my mouth of drinking cold things that is one of the side effects of Oxaliplatin although it wasn't severe yet and it didn't effect my hands.
The whole thing took from getting to the hospital at 7:00 am and leaving the Cancer Treatment Center at 3:30pm but from now on it should take anywhere from 2-4 hours for the chemotherapy treatment.
One thing is my appetite: I was STARVING! During treatment Tom went and got me a Carl's Jr: A big hamburger and fries and a strawberry milkshake. We got home and I ate a 1/2 of a Subways meatball Sub and a big piece of cherry cheesecake, then Tom cooked dinner and I had a fish sandwich. I "think" it's the steroid but seems to be settling down as I am not hungry right now.
No nausea/vomiting yet, only a little cold sensitivity in my throat when drinking "cold" drinks, again not painful just a shock like static electricity in my throat, no neuropathy or cold sensitivity in my hands or feet. A tiny headache and a bit of an ache at my neck incisions (especially when I cough!)
So first session done at the Cancer Center Treatment Center done and going on at home and will see what comes. I thanked Tom for all he is doing for me and all he is willing to do, he is the most wonderful man in the world and the best boyfriend ever and I love him with all my heart and soul, mind and body.
Will write again tomorrow ..........................
Fed the cats, made coffee and took my Prilosec and one 5mg Valium. Dressed in comfortable clothes and made Tom two breakfast egg, sausage and cheese biscuits.
Got together my blankie (yes blankie sue me I need comfort during this time), a tote bag with my laptop and a movie Tom wants to watch, a tote bag with books for us both and today's newspaper.
Put Tom's coffee in a travel mug and filled my purple Avastin jug with ginger ale and ice. Cleaned the cat's plates and put them in the drainer while Tom made the bed. Then I grabbed my purse and went outside to smoke (yes I am quitting but not all at once) and to wait on Tom (For me being a woman and Him being a man it takes me a hell of a lot less time to get ready than him (grins).
We hugged and kissed and got in the van and headed to the hospital.
Found the A floor in the main hospital, checked in and waited about 1/2 an hour then they called me back. Got me ready and started an IV, then had me walk in to the small operating table and gave me saline and then a cocktail of drugs for "twilight sleep" had me turn my head to the left and made a small incision in my neck, threaded the catheter into the vein and made an incision in my right chest, settled the port in place and connected the catheter then stitched the incision closed and put dressing over them. The needle and line from the port were left in so they could access it for the chemo.
Good drugs, was kind of aware sometimes but if I said even "ouch", "stings" or moaned they were right there pushing more of the drugs so no pain at all.
When I was done they wheeled me out, grabbed Tom and off we went to the Cancer Center where they ensconced me in a recliner in the main day room. Tom got me settled with a blanket and we both read while waiting. The only glitch was no one realized I was there and 45 minutes later Tom went and talked with a nurse, they found my chart and the nurse assigned to me came over and set up a IV drip of saline, then she started me on a drip of an anti-nausea medication and antibiotics and steroids and benadryl. Explaining all of them for me very well.
Tom started watching his movie on the laptop and I was soon asleep, woke up an hour later and got my pole unplugged from the wall and went to the bathroom (this was to be a recurring scene and the nurse said next time (Probably September 28th as barring my white blood cell count or platelet count going to low I will be having chemotherapy every two weeks) I will get one of the rooms with a bathroom (did I mention I have a bladder the size of a pea anyways? LOL).
Then we went on to a saline flush, then the Leucovorin (Folinic Acid), another saline flush, then the Oxaliplatin, another saline flush then the Avastin, then another saline flush and then the 5-FU by injection into the tube to the port in my chest. Then I was hooked up to the pack which will administer more 5-FU throughout 46 hours. I cannot shower during that time and have to try to be less than my klutzy self (GRINS)
Wednesday I go back at 1pm to have the pack removed and to have my dressings changed. Then on the 21st I go to have blood drawn and talk to my Dr.
During the treatment I felt a bit dizzy a few times, that went away, I had big hot flashes that started at my head and went to my toes along with accompanying sweat and I experienced a bit of the shock in my mouth of drinking cold things that is one of the side effects of Oxaliplatin although it wasn't severe yet and it didn't effect my hands.
The whole thing took from getting to the hospital at 7:00 am and leaving the Cancer Treatment Center at 3:30pm but from now on it should take anywhere from 2-4 hours for the chemotherapy treatment.
One thing is my appetite: I was STARVING! During treatment Tom went and got me a Carl's Jr: A big hamburger and fries and a strawberry milkshake. We got home and I ate a 1/2 of a Subways meatball Sub and a big piece of cherry cheesecake, then Tom cooked dinner and I had a fish sandwich. I "think" it's the steroid but seems to be settling down as I am not hungry right now.
No nausea/vomiting yet, only a little cold sensitivity in my throat when drinking "cold" drinks, again not painful just a shock like static electricity in my throat, no neuropathy or cold sensitivity in my hands or feet. A tiny headache and a bit of an ache at my neck incisions (especially when I cough!)
So first session done at the Cancer Center Treatment Center done and going on at home and will see what comes. I thanked Tom for all he is doing for me and all he is willing to do, he is the most wonderful man in the world and the best boyfriend ever and I love him with all my heart and soul, mind and body.
Will write again tomorrow ..........................
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