Aa
OT Off to the MS 150 tomorrow.
I just had chemo. My husband is riding I think his 18th. I am supposed to volunteer. I have never gone with him. We got a hotel 9 months ago. I guess it is how well I feel. I have not rebounded between chemos that well. I am putting on weight. Duke is great. I go up and down with my mood. I have had PTSD from my treatment at UNC. I wake up sweating thinking I am there and dying and under their care. I have written all the higher ups at UNC and sent my Duke report which said how bad a shape I was in. I sent my blog off to people I respect and asked if it is a story to go public or just my personal anger. Now I can let it go. If someone thinks it is a story that needs to be told I will tell it otherwise I will drop it. At least I am in good hands. I have a $10,000 bill out of pocket from UNC which angers me but oh well I am a live and my Duke bill will probably double that. Cancer is not cheap/ Luckily I am not treating my MS right now. I see the MS Specialist at Duke once a year and have none of the MRIs he suggests. Because I do not want to know of I have MS in my spine yet.
Now I have the uncertainties of two cancers. One which they really can't tell if it is still there or spreading and another I have a 90% chance of getting. The blood tests are like PSAs and sometimes paint a rosey picture like they did with my dad while his cancer spread like wildfire and CT scans miss the cancer I have had that happen already. They only way they can tell is to gut me again and go through all my organs I have left but that is dangerous because of the scar tissue from the radical surgery. They have to save opening me up to remove more bowel. So my life is a big bowel of uncertainty.
Apparently UNC was too scared of my condition to give me the full dose of chemo they only gave me 60%. They could have gotten me healthier to give me the full dose. I would love to punch that idiot Doctor. Duke is worried I am not healthy enough yet. Because my Cancer is so bad they want the full chemo. My worry is after my last chemo on 24th we start over with the full dose and six more. I do not want any more chemo, but that sounds where I am heading. Get me healthy six more months of hell, then double mastectomies. I have to decide whether I am the miracle or the short life expectancy to fight the possible breast cancer. My odds on the first cancer are measured in months. My family history is not good. Everyone ended up with several cancers and died horrible deaths. The treatments just prolonged the suffering.
PPMS uncertainty seems better and better every day to me. But we just have today and today is a good day. I have a friend coming for lunch. Since I do not like to eat a friend comes almost every day at lunch to get me to eat. Not a bad thing. Otherwise I do not get out of bed I am so weak.
Life is good.
Alex
Now I have the uncertainties of two cancers. One which they really can't tell if it is still there or spreading and another I have a 90% chance of getting. The blood tests are like PSAs and sometimes paint a rosey picture like they did with my dad while his cancer spread like wildfire and CT scans miss the cancer I have had that happen already. They only way they can tell is to gut me again and go through all my organs I have left but that is dangerous because of the scar tissue from the radical surgery. They have to save opening me up to remove more bowel. So my life is a big bowel of uncertainty.
Apparently UNC was too scared of my condition to give me the full dose of chemo they only gave me 60%. They could have gotten me healthier to give me the full dose. I would love to punch that idiot Doctor. Duke is worried I am not healthy enough yet. Because my Cancer is so bad they want the full chemo. My worry is after my last chemo on 24th we start over with the full dose and six more. I do not want any more chemo, but that sounds where I am heading. Get me healthy six more months of hell, then double mastectomies. I have to decide whether I am the miracle or the short life expectancy to fight the possible breast cancer. My odds on the first cancer are measured in months. My family history is not good. Everyone ended up with several cancers and died horrible deaths. The treatments just prolonged the suffering.
PPMS uncertainty seems better and better every day to me. But we just have today and today is a good day. I have a friend coming for lunch. Since I do not like to eat a friend comes almost every day at lunch to get me to eat. Not a bad thing. Otherwise I do not get out of bed I am so weak.
Life is good.
Alex
Alex:
Love you too, Alex.
This forum is a truly special place and we develop bonds with people here. I thank you so much for your candor in sharing your experience with cancer; it is highly personal and your posts give us so much insight into what you and others face in dealing with an aggressive form of cancer.
I'm sure I speak for many others here when I say I wish that I could wave a magic wand and make everything better.
Alas, I do not have a magic wand. Instead, I include you in my nightly "meditation", for lack of a better word. Every day now for almost three months.
Some nights I have visualized myself as the chemo drugs, seeking out all of the cancerous cells in your body and killing them off one by one. I then slowly, carefully find any and all pre-cancerous cells hiding in your body and destroy them too so that your body is free of any cells which could cause the cancer to recur.
I have so wished that I could do more than just send positive energy and moral support your way. One night my mind wandered to doing something more concrete for you and friends and family who are providing care for you. I got to help out by being with you in your home, which was an honor for me. I was a little nervous about conversation; you were very tired and not really up to talking. Instead, I read to you from a book that was somewhat dry and you did not have to concentrate on the words, yet you heard my voice as a steady, calming sound that soothed you. You did not sleep. Instead, you relaxed with your eyes closed and let a soft voice bathe you in comfort.
Last night before I drifted off to sleep, I thought this post and how I wanted to reply.
With love and tenderness,
Audrey
Love you too, Alex.
This forum is a truly special place and we develop bonds with people here. I thank you so much for your candor in sharing your experience with cancer; it is highly personal and your posts give us so much insight into what you and others face in dealing with an aggressive form of cancer.
I'm sure I speak for many others here when I say I wish that I could wave a magic wand and make everything better.
Alas, I do not have a magic wand. Instead, I include you in my nightly "meditation", for lack of a better word. Every day now for almost three months.
Some nights I have visualized myself as the chemo drugs, seeking out all of the cancerous cells in your body and killing them off one by one. I then slowly, carefully find any and all pre-cancerous cells hiding in your body and destroy them too so that your body is free of any cells which could cause the cancer to recur.
I have so wished that I could do more than just send positive energy and moral support your way. One night my mind wandered to doing something more concrete for you and friends and family who are providing care for you. I got to help out by being with you in your home, which was an honor for me. I was a little nervous about conversation; you were very tired and not really up to talking. Instead, I read to you from a book that was somewhat dry and you did not have to concentrate on the words, yet you heard my voice as a steady, calming sound that soothed you. You did not sleep. Instead, you relaxed with your eyes closed and let a soft voice bathe you in comfort.
Last night before I drifted off to sleep, I thought this post and how I wanted to reply.
With love and tenderness,
Audrey
Thanks everyone. My lunch buddy forgot all about me. I did not get lunch and had a ton of errands to do before leaving. I drove myself all over town which I usually do not do so I guess I am okay today. Now i will finally eat.
Love you guys.
Alex
Love you guys.
Alex
This is a horrible thing... there's no denying that and there''s possibly nothing anyone can say to make / help you feel any better. I'm so sorry to hear / read this story as I can feel your pain and struggle with how to proceed with your treatment and even how you can feel (mostly due to mood swings, but who the hell blames you with what's going on in your life?!)
I wanted to write to you to share a little more about myself to let you know that you're not alone. Although I may not be dealing with cancer personally, it has affect my life in almost every aspect possible otherwise.
The love of my life (at that time) was dx'd with 3 months to live, suddenly and unexpectedly. He went to the doctor for what felt like a softball had hit him in the chest. He had had a cough for many years prior (since I had always known him 3+ years) and was immediately dx'd with bone cancer. He had always worked in excavation due to his father's business and was exposed to lime sandstone his entire life. He died at age 34. He was never married, never had children, and had extreme anxiety on his deathbed over all the things he was too much in pain to ever do before it was too late. His case was too extreme for chemo. He couldn't even fight and lived the remaining 3 months on morphine and anxiety pills. It was very sad.
Another year later, my previous boss from a few years back had died from cancer. She was an amazing person and very nurturing. She was hopeful, had her bout with chemo, went into remission, but ultimately passed away. She was a bit overweight, and I say this because you know -- there was an article about people who overcome cancer when not being over weight... it must be even more difficult when you don't have the energy after your treatments, I imagine.
My final story is to make all this sound better and a bit more hopeful :)
My grandfather lives with colon cancer and skin cancer (melanoma). He has gone through remissions and chemo and is as jolly as santa. He has a colon bag, and a huge hole gouged out from the top of his big round bald head. My grand mother says it was pretty gorey -- like a horror film. But, he is a fighter! He never complained about having to go get any of that done. We always asked him if he needed anything, if he felt sick... he just wanted to be left alone to heal and now, he's acting like he's just a normal person who doesn't have a care in the world... and maybe he doesn't. Maybe he doesn't fear the unknown like most of us here write about. But, when I feel bad about life, sometimes, just sometimes, it feels better to think about him because he is inspiring to keep moving the way he does... and laughing... always smiling and giggling.
Cancer does something to you, obviously. Not everyone in a good way, and no one can ever understand how you feel going through it and it's treatments, much like MS. Even those who have it can only empathize to a degree.
I'm sorry to hear of your troubled feelings and I only hope that my sharing of having experiences with cancer in my life help to make you feel less alone in yours.
-mayperl
I wanted to write to you to share a little more about myself to let you know that you're not alone. Although I may not be dealing with cancer personally, it has affect my life in almost every aspect possible otherwise.
The love of my life (at that time) was dx'd with 3 months to live, suddenly and unexpectedly. He went to the doctor for what felt like a softball had hit him in the chest. He had had a cough for many years prior (since I had always known him 3+ years) and was immediately dx'd with bone cancer. He had always worked in excavation due to his father's business and was exposed to lime sandstone his entire life. He died at age 34. He was never married, never had children, and had extreme anxiety on his deathbed over all the things he was too much in pain to ever do before it was too late. His case was too extreme for chemo. He couldn't even fight and lived the remaining 3 months on morphine and anxiety pills. It was very sad.
Another year later, my previous boss from a few years back had died from cancer. She was an amazing person and very nurturing. She was hopeful, had her bout with chemo, went into remission, but ultimately passed away. She was a bit overweight, and I say this because you know -- there was an article about people who overcome cancer when not being over weight... it must be even more difficult when you don't have the energy after your treatments, I imagine.
My final story is to make all this sound better and a bit more hopeful :)
My grandfather lives with colon cancer and skin cancer (melanoma). He has gone through remissions and chemo and is as jolly as santa. He has a colon bag, and a huge hole gouged out from the top of his big round bald head. My grand mother says it was pretty gorey -- like a horror film. But, he is a fighter! He never complained about having to go get any of that done. We always asked him if he needed anything, if he felt sick... he just wanted to be left alone to heal and now, he's acting like he's just a normal person who doesn't have a care in the world... and maybe he doesn't. Maybe he doesn't fear the unknown like most of us here write about. But, when I feel bad about life, sometimes, just sometimes, it feels better to think about him because he is inspiring to keep moving the way he does... and laughing... always smiling and giggling.
Cancer does something to you, obviously. Not everyone in a good way, and no one can ever understand how you feel going through it and it's treatments, much like MS. Even those who have it can only empathize to a degree.
I'm sorry to hear of your troubled feelings and I only hope that my sharing of having experiences with cancer in my life help to make you feel less alone in yours.
-mayperl
You are amazing. I always read what you have on this forum and thank you. You are the strongest, most positive women I have ever known in my life. AMAZING.
You are always in my prayers.
Diggie
You are always in my prayers.
Diggie
Alex I´m so happy that you´re gaining weight, that is a sign of something good happening in your fight with this horrible cancer. And I´m also happy that you´re always able to appreciate the good things, the good days and just think of one day at a time.
Always thinking of you and wishing you all the best,
Dagun
Always thinking of you and wishing you all the best,
Dagun
God bless you Alex. You have certainly been dealt lots of crap but still sees the light of a good day! You are lucky to have a friend by your side at lunchtime. I assume you are now eating enough that you are not needing a feeding tube. I hope you are able to continue to eat enough to get stronger.
Thanks for always keeping us posted. My thoughts and prayers are always with you.
(((hugs)))
Deb
Thanks for always keeping us posted. My thoughts and prayers are always with you.
(((hugs)))
Deb
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