Well, that was your first mistake. You thought I was sane.
Why would I say something awful like that? Let me explain before everyone gets their panties in a bunch and stuck.
Breast cancer is the most common form of cancer in the United States, with approximately 249,000 women diagnosed last year. Sarcomas? Approximatly12,300. That actually is all soft tissue cancers. That is a big difference. That over 230,000 cases means more research is done and new treatments come out regularly. There is more fund raising, more financial help (if you dig and look), more options available for treatment. A better chance for survival. This morning on Good Morning America they did a bit and the numbers of survival are higher than ever.
Actually this is rather exciting, there is a new treatment for metastatic breast cancer, just approved!https://www.upi.com/Health_News/2017/09/29/FDA-approves-new-treatment-for-metastatic-breast-cancers/7571506697863/
They are coming out with new treatments, trials, and ways of detecting it, which is amazing. There is funding to help stop it. To help those with it.
Sarcomas? Not so much. Look it is a game of numbers. Sarcomas are rare, and of the 12,300 there are 50 typed. Some they can't identify, so they are lumped together as "unidentifiable". Not much research done, although there are some out there that are swimming against the tide.
"If caught early, sarcomas can be treated effectively with surgery. However, if the disease spreads, or metastasizes, treatment with chemotherapy does relatively little to slow disease progression or improve survival. The median survival time after diagnosis of advanced disease is 12 to 16 months. In 2015, 12,000 people were diagnosed with soft-tissue sarcomas and 5,000 died of the disease, according to the American Cancer Society." Columbia University Medical Center
41% die. I am going to die.
Last year, Latruvo was fast-tracked through the FDA. It is the newest treatment. It was a huge break through in decades. You want to know what they got excited about? Not that it can end the cancer, but perhaps extend the life by a year. Here is the article on it with more information: https://www.news-medical.net/news/20160721/Adding-new-monoclonal-antibody-to-chemotherapy-improves-survival-in-soft-tissue-sarcoma-patients.aspx
I can't find any references to any break troughs from prior to that. In reality, if it is live or die, a year is good, as long as the year is good quality.
What is the point? I have cancer, it is called Sarcoma, so do many others. The point? I wish more people would acknowledge the rarer cancers. More research would be done. More help available for those with Sarcomas.
It won't happen in my lifetime, but soon I hope.
Thursday, October 12, 2017
The Adventures of Yondelis, the sea sponge chemo
Actually I finished cycle two. The first cycle I thought I felt so crappy because of
being exhausted. Nope. This time it kicked my ass.
I got hooked up on Thursday Oct.5, went home with my
buddy the pump, felt ok, Friday felt normal.
Went about my day, got the pump taken off.
Got up Saturday, and felt a bit yucky, but wanted to
check out Toastmasters. You know push
the comfort zone thing. I didn't make it
through the whole thing.
About 15 minutes after I got there, I started feeling
dizzy, and nausea kicked in hard. Went
and sat in the refreshment room, downed some Zofran, still felt like crap. As soon as I felt ok enough to drive home, I
did.
I spent three day in bed.
If it weren't for the dogs, I would have just stayed in bed. I would get up let them out, back to bed, get
up feed them, back to bed. And I had to
really push myself to do that. My body
was beyond exhausted. I was sipping
water which just nauseated me.
When I did get up, I to let the girls out, I'd open a can
of soup, drain the broth into a cup, warm it, sip it, and leave the cup and can
on the counter. Seriously disgusting for
me.
I'd wake up and say I have to get up; my body said like
hell. I'd fall back to sleep, just to be
on the hamster wheel. I finally felt ok
enough to get to CVS and get some ginger ale (craving it like crazy), pedalyte,
and Gatorade. I was getting dehydrated.
Finally able to keep fluids down, I started sipping as
much as I could at one time. Trying to
increase it a little every time I took a couple of drinks.
I saw my doctor yesterday, we are going to stay the
course with it. After the third cycle,
we'll see if the sarcomas are being kept in check or if they are
spreading. If they are in check, we will
reduce the dose a bit to try to ease the side effects.
The joy I have to look forward to Oct. 26 or is it the 27th?
Tuesday, October 10, 2017
Random Emotions
If someone is reading this, I thank you. I don't know if anyone really reads or pays attention, or even thinks about some of the stuff I write. Opening people's thought processes and perhaps helping them view things in a minute change of light would be nice but, I don't know no one really says anything.
Don't expect a happy, serious, uplifting, courageous, point of view of knowing I am dying. No laughter this time. At the moment I don't have any to share. Lots of people with cancer will get to this point at one time or another. Maybe it just took more for me. OH, and please if you are offended by cussing, well, you may just want to pass this one up. This will be one that is raw emotion, no filter.
Had the 24 hour chemo Thursday. Took the pump off Friday, felt pretty good. Woke up Saturday, feeling ok, kinda rough, but gotta live life. I went to a Toastmasters, and was there maybe 20 minutes before I had to leave. Sat in the refreshment area for another 20 minutes till I was sure I was ok to drive home. Lost three freaking days to nausea and exhaustion. I don't mean the sleep another 15 minutes. I mean the type where your body says fuck you you aint' doing shit.
Anyone who has been to my home knows I like it neat and tidy, my oasis. My idea of doing anything for the past few days was opening a can of soup, draining the broth in a bowl, nuking it, eating part of it and be happy that I put the bowl and can on the counter rather than dropping it.
What does it mean that I am told I am brave? Hell, I don't know. I have no choice in the matter. I pulled the short stick on life. SIX fucking times. Seriously, once wasn't enough, I just had to make sure that it was as bad as I thought.
Brave, yeah right. Bullshit. I would say I made this bed, so now I have to lay in it, but I didn't, life made it, but I still have to lay in it.
Graceful? Courageous? Dealing with dignity? How is that, someone please explain to me. Because I laugh? I have no choice. Crying isn't an option. Shit I remember the last time I really cried, and no one that was around knew what to do or how to react. Come to think of it, I don't know exactly how to react to someone crying.
So many think I have my shit together. Or that I have my little ducks in a row. Those little bastards are flying everywhere and shitting on everything.
I am going to die sooner rather than later. Wrapping your head around something like that isn't the easiest thing to do. Although, I have had since 2003 and several trial runs to do it. Nothing like it is inoperable, and spreading to make trying new chemotherapy sound appealing. Hell yeah, use me as your ginneau (shit I can't spell that) pig, I'll give it a go. Maybe the cancer won't spread! You see the line rounding up around the building. A huge line of one. ME. At least where I am.
Dying. I don't want to die. I want to find a fucking job and work, pay my bills, and make my children proud of me. That is what is most important to me. I want them to be proud of who I became, not the lost idiot who had no back bone I was. I want them to have more memories of me that are fun and good. I don't want to go. Not yet. I am not ready. But it is something I have to face every day. I have always been proud of them. Even when I had my head up my ass. I knew I did two things in my life right.
I want my sisters to learn to communicate better, rather than the knee jerk reaction of lashing out when they think they have been wrongs. Temper has always been a bad thing in the Caputo family. Problem is it flares fast, and lasts. They need to step back and ask, why did you say that? Or at least think before they speak or type. The hardest thing in the world to do. You have no idea how many times I have typed something just to delete it after I calmed down.
All my friends I want to know that I am horrid at communication. Always have been unless it is the written word, and then I am bad because I forget to mail stuff. The only person I ever was 100% jolly on the spot when mailing something was when Jim Sr. was in college. I knew how many days it took a letter to get to him and back, and I would read each letter, write and run to the nearest mailbox with the soonest pick up.
Honestly, I am not ignoring you. I think about my friends constantly. I know actions speak louder than words. To be honest, I don't have the words to express what friendship means to me. I have always been that odd ball loner kid. I quake in my boots in social situations. I actually am introverted. I hide it well. Huh, I was that odd ball loner kid, and I am an odd ball adult. Lately, it seems that I am living on something that is starting to become an island. Everyone is moving. One of the reasons I made myself go to Toastmasters, I am becoming that crazy lady with cancer and two dogs. Guess I will have to see what Senior Activities there are.
Back to having my shit together and dying. I don't have my shit together. I am the most unorganized, lost soul I know. (Please don't take the lost soul religiously).
I only started pulling my head out of my preverbal ass back in 2008. I was becoming a person I didn't like. Rescue can do that to you if you stay too long in it. I stayed too long I think.
So what happened in 2008? I got a call. There was a job opening in BaseTel. I said ok, well after I asked my ex, turned the shelter over to a great group of people who are running it. (I literally stepped away, thick headed ownership issues).
Even got divorced in 2010. Hope he is happy with whoever he is with. Seriously. Everyone deserves to be happy in this life. As long as they are good to each other and good together.
Over the years here, I have paid off bills, helped others anonymously, even had a nest egg. (Had is the active word here.) I thought the worst for me was when the contract ended and I lost my job. Been looking for one ever since. Phone interviews, even an in person couple, but no job.
Guess I was wrong when I thought the worst happened. Now I need to figure a way to get a job, pay bills, do chemo that makes me sick, afford insurance (car and health), keep a roof over my head and food on the table. Not much. People tell me not to worry about money. Well, that is hard. Especially when it pays for the things that keep you alive. Even if the time is limited. I think the one thing that all cancer patients worry about is money. I couldn't imagine being faced with the possibility of being homeless and having cancer. Even if you have someone you can move in with, cancer wears on everyone, and you could soon become that anchor around someone's neck.
At the moment I don't feel as raw as I did when I started. I've calmed down, there are still lots of things I need to address, but right now, I don't want to. But I can't let that become a habit. Not doing something.
Do me a favor. In the comments section pick a number 1-52. The first six numbers that are different I'll invest a dollar for a lottery ticket.
What will I do if it wins? Pay bills, support sarcoma research, random acts of kindness to strangers, help family and friends.
Don't expect a happy, serious, uplifting, courageous, point of view of knowing I am dying. No laughter this time. At the moment I don't have any to share. Lots of people with cancer will get to this point at one time or another. Maybe it just took more for me. OH, and please if you are offended by cussing, well, you may just want to pass this one up. This will be one that is raw emotion, no filter.
Had the 24 hour chemo Thursday. Took the pump off Friday, felt pretty good. Woke up Saturday, feeling ok, kinda rough, but gotta live life. I went to a Toastmasters, and was there maybe 20 minutes before I had to leave. Sat in the refreshment area for another 20 minutes till I was sure I was ok to drive home. Lost three freaking days to nausea and exhaustion. I don't mean the sleep another 15 minutes. I mean the type where your body says fuck you you aint' doing shit.
Anyone who has been to my home knows I like it neat and tidy, my oasis. My idea of doing anything for the past few days was opening a can of soup, draining the broth in a bowl, nuking it, eating part of it and be happy that I put the bowl and can on the counter rather than dropping it.
What does it mean that I am told I am brave? Hell, I don't know. I have no choice in the matter. I pulled the short stick on life. SIX fucking times. Seriously, once wasn't enough, I just had to make sure that it was as bad as I thought.
Brave, yeah right. Bullshit. I would say I made this bed, so now I have to lay in it, but I didn't, life made it, but I still have to lay in it.
Graceful? Courageous? Dealing with dignity? How is that, someone please explain to me. Because I laugh? I have no choice. Crying isn't an option. Shit I remember the last time I really cried, and no one that was around knew what to do or how to react. Come to think of it, I don't know exactly how to react to someone crying.
So many think I have my shit together. Or that I have my little ducks in a row. Those little bastards are flying everywhere and shitting on everything.
I am going to die sooner rather than later. Wrapping your head around something like that isn't the easiest thing to do. Although, I have had since 2003 and several trial runs to do it. Nothing like it is inoperable, and spreading to make trying new chemotherapy sound appealing. Hell yeah, use me as your ginneau (shit I can't spell that) pig, I'll give it a go. Maybe the cancer won't spread! You see the line rounding up around the building. A huge line of one. ME. At least where I am.
Dying. I don't want to die. I want to find a fucking job and work, pay my bills, and make my children proud of me. That is what is most important to me. I want them to be proud of who I became, not the lost idiot who had no back bone I was. I want them to have more memories of me that are fun and good. I don't want to go. Not yet. I am not ready. But it is something I have to face every day. I have always been proud of them. Even when I had my head up my ass. I knew I did two things in my life right.
I want my sisters to learn to communicate better, rather than the knee jerk reaction of lashing out when they think they have been wrongs. Temper has always been a bad thing in the Caputo family. Problem is it flares fast, and lasts. They need to step back and ask, why did you say that? Or at least think before they speak or type. The hardest thing in the world to do. You have no idea how many times I have typed something just to delete it after I calmed down.
All my friends I want to know that I am horrid at communication. Always have been unless it is the written word, and then I am bad because I forget to mail stuff. The only person I ever was 100% jolly on the spot when mailing something was when Jim Sr. was in college. I knew how many days it took a letter to get to him and back, and I would read each letter, write and run to the nearest mailbox with the soonest pick up.
Honestly, I am not ignoring you. I think about my friends constantly. I know actions speak louder than words. To be honest, I don't have the words to express what friendship means to me. I have always been that odd ball loner kid. I quake in my boots in social situations. I actually am introverted. I hide it well. Huh, I was that odd ball loner kid, and I am an odd ball adult. Lately, it seems that I am living on something that is starting to become an island. Everyone is moving. One of the reasons I made myself go to Toastmasters, I am becoming that crazy lady with cancer and two dogs. Guess I will have to see what Senior Activities there are.
Back to having my shit together and dying. I don't have my shit together. I am the most unorganized, lost soul I know. (Please don't take the lost soul religiously).
I only started pulling my head out of my preverbal ass back in 2008. I was becoming a person I didn't like. Rescue can do that to you if you stay too long in it. I stayed too long I think.
So what happened in 2008? I got a call. There was a job opening in BaseTel. I said ok, well after I asked my ex, turned the shelter over to a great group of people who are running it. (I literally stepped away, thick headed ownership issues).
Even got divorced in 2010. Hope he is happy with whoever he is with. Seriously. Everyone deserves to be happy in this life. As long as they are good to each other and good together.
Over the years here, I have paid off bills, helped others anonymously, even had a nest egg. (Had is the active word here.) I thought the worst for me was when the contract ended and I lost my job. Been looking for one ever since. Phone interviews, even an in person couple, but no job.
Guess I was wrong when I thought the worst happened. Now I need to figure a way to get a job, pay bills, do chemo that makes me sick, afford insurance (car and health), keep a roof over my head and food on the table. Not much. People tell me not to worry about money. Well, that is hard. Especially when it pays for the things that keep you alive. Even if the time is limited. I think the one thing that all cancer patients worry about is money. I couldn't imagine being faced with the possibility of being homeless and having cancer. Even if you have someone you can move in with, cancer wears on everyone, and you could soon become that anchor around someone's neck.
At the moment I don't feel as raw as I did when I started. I've calmed down, there are still lots of things I need to address, but right now, I don't want to. But I can't let that become a habit. Not doing something.
Do me a favor. In the comments section pick a number 1-52. The first six numbers that are different I'll invest a dollar for a lottery ticket.
What will I do if it wins? Pay bills, support sarcoma research, random acts of kindness to strangers, help family and friends.
Monday, October 2, 2017
Being Termnal or Having an Expiration Date
Many people are uncomfortable with the fact I am open with the fact I have an expiration date. That is unfortunate. They seem to miss the in-between.
What do I mean in-between? The in-between time from finding out you are going to die with an approximate time frame to the point where you actually check out of this life.
I guess people don't know what to expect. I think they seem to expect me to be weak, and feeble. When they see me, they see someone who looks healthy. Ok, well maybe a bit anorexic (down to 105 pounds) yeah I do have some dark circles under my eyes.
Sometimes I get the feeling they want to ask questions, but don't want to offend or are afraid of the answers.
Personally I wish people would ask questions. Questions make you think, and if you think you can solve things.
What do I mean in-between? The in-between time from finding out you are going to die with an approximate time frame to the point where you actually check out of this life.
I guess people don't know what to expect. I think they seem to expect me to be weak, and feeble. When they see me, they see someone who looks healthy. Ok, well maybe a bit anorexic (down to 105 pounds) yeah I do have some dark circles under my eyes.
Sometimes I get the feeling they want to ask questions, but don't want to offend or are afraid of the answers.
Personally I wish people would ask questions. Questions make you think, and if you think you can solve things.
Having a sort of rough day
I woke up feeling ok. Actually slept through the night. Got up only once! Seriously for me that is amazing. I try to drink plenty of fluid to flush out the drugs.
But still I am having a rough day. I know it is basically hormones gone crazy. Long lasting drugs have long lasting effects.
I felt ok, then I turned on the TV. What a shock. So much negative things going on, so many people needing help. I say my little prayer for everyone. It is a simple one, may the world and all it's people know healing, both physical and mental, have a roof, and food. But most of all develop the willingness to try to understand one another, accept we are not the change and learn to work together despite the differences. Oh, and for me, I'd like to win $100,000.00 after taxes and giveaway to others.
So why is it a sort of rough day? Regular life seems over whelming right now. Actually, I feel better than I did a couple hours ago, I sat outside and listened to the birds and watched Bailey and Sasha run and play. It helped calm my mind and emotions.
Still a bit overwhelmed. Just by things that need done, lists that need completed, budgeting, needing a job. I don't think the fact my left foot/leg still is swelling and aching. They can't figure out why either. I don't think the limpy gimpy helps the job hunt.
A woman I know of (because I know her children) cancer is back. They are draining her lung today. I pray it goes well and somehow it goes away for her.
So many people with cancer. So many with it coming back. It is overwhelming.
I am stressing over health insurance too. Cost. It is going to go up, I know it is. Do I stay with the Cobra for one more year or try for Medicare? Social Security said, "OH, you are disabled!" but the disability payment doesn't start until December. No back pay either. You have to be out of work for 5 months. The whole thing is a pain in the ass, but something is better than nothing. And unemployment doesn't cover because of the disability.
Oh, and folks, just because someone gets disability, don't assume it is easy street. If I pay for health insurance the mortgage/rent is short, or visa versa. Not to mention other things like electric, water, gas, car insurance. The only reason I say this is because of a comment someone made. Oh, so you won't have to worry about anything once it kicks in. No, people still have to worry, and scrimp and save. So do me a huge favor, the next time you hear someone is on disability, have a bit of compassion for them and say a little prayer that somehow things work out for them.
Ultra sound showed no clots. X-ray of the knee show a bit of arthritis. X-ray of the foot and ankle showed a heel spur, which I had no idea was there, and some arthritis, which again I didn't know was there. The top of the food aches and sometimes it feels like it is burning. Oh, and the skin on the one side is sensitive. You know the kind of sensitive that when you touch it is sorta hurts, but you touch it again just to make sure you felt it right? Yeah, that kind. You can't help but touch it.
Oh for the record, yes I did eat breakfast, so my off day isn't because of that, no I didn't drink as much water as I normally do yesterday, but I am no dehydrated.
Maybe it is just that damn achy foot. After a while it can be irritating.
I think I am going to take a nap. I feel tired.
But still I am having a rough day. I know it is basically hormones gone crazy. Long lasting drugs have long lasting effects.
I felt ok, then I turned on the TV. What a shock. So much negative things going on, so many people needing help. I say my little prayer for everyone. It is a simple one, may the world and all it's people know healing, both physical and mental, have a roof, and food. But most of all develop the willingness to try to understand one another, accept we are not the change and learn to work together despite the differences. Oh, and for me, I'd like to win $100,000.00 after taxes and giveaway to others.
So why is it a sort of rough day? Regular life seems over whelming right now. Actually, I feel better than I did a couple hours ago, I sat outside and listened to the birds and watched Bailey and Sasha run and play. It helped calm my mind and emotions.
Still a bit overwhelmed. Just by things that need done, lists that need completed, budgeting, needing a job. I don't think the fact my left foot/leg still is swelling and aching. They can't figure out why either. I don't think the limpy gimpy helps the job hunt.
A woman I know of (because I know her children) cancer is back. They are draining her lung today. I pray it goes well and somehow it goes away for her.
So many people with cancer. So many with it coming back. It is overwhelming.
I am stressing over health insurance too. Cost. It is going to go up, I know it is. Do I stay with the Cobra for one more year or try for Medicare? Social Security said, "OH, you are disabled!" but the disability payment doesn't start until December. No back pay either. You have to be out of work for 5 months. The whole thing is a pain in the ass, but something is better than nothing. And unemployment doesn't cover because of the disability.
Oh, and folks, just because someone gets disability, don't assume it is easy street. If I pay for health insurance the mortgage/rent is short, or visa versa. Not to mention other things like electric, water, gas, car insurance. The only reason I say this is because of a comment someone made. Oh, so you won't have to worry about anything once it kicks in. No, people still have to worry, and scrimp and save. So do me a huge favor, the next time you hear someone is on disability, have a bit of compassion for them and say a little prayer that somehow things work out for them.
Ultra sound showed no clots. X-ray of the knee show a bit of arthritis. X-ray of the foot and ankle showed a heel spur, which I had no idea was there, and some arthritis, which again I didn't know was there. The top of the food aches and sometimes it feels like it is burning. Oh, and the skin on the one side is sensitive. You know the kind of sensitive that when you touch it is sorta hurts, but you touch it again just to make sure you felt it right? Yeah, that kind. You can't help but touch it.
Oh for the record, yes I did eat breakfast, so my off day isn't because of that, no I didn't drink as much water as I normally do yesterday, but I am no dehydrated.
Maybe it is just that damn achy foot. After a while it can be irritating.
I think I am going to take a nap. I feel tired.
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