I'm really struggling here. My PET scan is in 2 days and I'm so stressed out, over-medicated, pissed off, scared, and just plain tired of all this cancer bullshit. Yes- I usually keep a positive attitude, look on the bright side, be optimistic, yada yada yada. But it's so hard to keep my game-face on all the time for everyone else. It's exhausting.
Sometimes I feel really, really alone, especially at home where you'd think I'd get the most support. But the kid still won't talk about it, and the man is still in his protective bubble of denial. Just the last week he said "I didn't know you were at stage III-C! I thought you were, like, stage I! There's only stage 4 left!"
NO SHIT?? REALLY?? UHH, HELL-OOOOO, I STARTED OUT WITH STAGE III-C 15 MONTHS AGO. WHERE THE FUCK HAVE YOU BEEN?? YOU'RE JUST NOW LOOKIN' SHIT UP?? WHAT THE FUCK DO YOU THINK I'VE BEEN DEALING WITH ALL THIS TIME?? PULL YOUR FUCKING HEAD OUT OF YOUR ASS! OH. MY. GOD!!!
I started a new weekly support group in addition to my monthly ovarian cancer networking group at The Wellness Community because a month is too long for me to go without being with people who totally, truly get me and can help me learn some better coping skills, no matter what is going on at home. I'll be taking the kid with me soon and putting him in the teen group, because he definitely needs some help dealing with this. After all that's happened (cancer, chemo, heart attack, recurrence, more chemo, pulmonary embolism, etc.) he thinks I'm immortal, and that nothing will kill me except a beheading. I wish. At least I would see that coming.
I had to have that Just-In-Case Talk with my mom, who also doesn't want to talk about 'that', but understands my need to set some things up. No one will make medical decisions for me. I'm making a Living Will to make sure of it. After seeing what my dad, my ex-FIL and my friends have gone through, I am adamant about not being hooked up, plugged in, zapped, or cut open any more if and when the time comes. Why is it so hard for some people to accept that? Just back me up on whatever decision I make is all I'm asking (demanding).
Everyone says "Oh, you're not going to die!" Well, yes. I am. I'm not being a Negative Nellie (sorry, Kat), either. Everyone dies eventually. I try to explain that the only difference between getting hit by a bus or dropping dead of a heart attack and having cancer is that when you have cancer, you have a LOT more time to think about it. Most people don't get to plan anything. Have you ever tried to plan your own funeral? I don't want to be buried. Cremation has always been desirable to me. I'm donating my body to Science Care. Check it out. I want a 3 day party with bagpipers, whiskey, and a keg or 3. I have a special playlist on my iPod for the occasion. They aren't sad "Arms of the Angel" songs. It's only Rock and Roll (but I like it, like it, yes i do). You'll probably hear one or 20 or your favorites. Eat, drink, be merry, dance, love, laugh. It's what we'd be doing anyway, right? It will be on a weekend, and you're all invited. I'll keep ya posted.
Sometimes I feel really, really alone, especially at home where you'd think I'd get the most support. But the kid still won't talk about it, and the man is still in his protective bubble of denial. Just the last week he said "I didn't know you were at stage III-C! I thought you were, like, stage I! There's only stage 4 left!"
NO SHIT?? REALLY?? UHH, HELL-OOOOO, I STARTED OUT WITH STAGE III-C 15 MONTHS AGO. WHERE THE FUCK HAVE YOU BEEN?? YOU'RE JUST NOW LOOKIN' SHIT UP?? WHAT THE FUCK DO YOU THINK I'VE BEEN DEALING WITH ALL THIS TIME?? PULL YOUR FUCKING HEAD OUT OF YOUR ASS! OH. MY. GOD!!!
I started a new weekly support group in addition to my monthly ovarian cancer networking group at The Wellness Community because a month is too long for me to go without being with people who totally, truly get me and can help me learn some better coping skills, no matter what is going on at home. I'll be taking the kid with me soon and putting him in the teen group, because he definitely needs some help dealing with this. After all that's happened (cancer, chemo, heart attack, recurrence, more chemo, pulmonary embolism, etc.) he thinks I'm immortal, and that nothing will kill me except a beheading. I wish. At least I would see that coming.
I had to have that Just-In-Case Talk with my mom, who also doesn't want to talk about 'that', but understands my need to set some things up. No one will make medical decisions for me. I'm making a Living Will to make sure of it. After seeing what my dad, my ex-FIL and my friends have gone through, I am adamant about not being hooked up, plugged in, zapped, or cut open any more if and when the time comes. Why is it so hard for some people to accept that? Just back me up on whatever decision I make is all I'm asking (demanding).
Everyone says "Oh, you're not going to die!" Well, yes. I am. I'm not being a Negative Nellie (sorry, Kat), either. Everyone dies eventually. I try to explain that the only difference between getting hit by a bus or dropping dead of a heart attack and having cancer is that when you have cancer, you have a LOT more time to think about it. Most people don't get to plan anything. Have you ever tried to plan your own funeral? I don't want to be buried. Cremation has always been desirable to me. I'm donating my body to Science Care. Check it out. I want a 3 day party with bagpipers, whiskey, and a keg or 3. I have a special playlist on my iPod for the occasion. They aren't sad "Arms of the Angel" songs. It's only Rock and Roll (but I like it, like it, yes i do). You'll probably hear one or 20 or your favorites. Eat, drink, be merry, dance, love, laugh. It's what we'd be doing anyway, right? It will be on a weekend, and you're all invited. I'll keep ya posted.
Soon, you'll be in the arms of many of your nearest and dearest for love, support, honesty, and all that stuff. In the meantime, I'm just a phone call, text, fb, etc away. Anytime, day or night, whatever you want. But you know that. And I'm sure you know you just told exactly how I feel too. So you're not alone in any of this. Even at the end, I'll see you there. I love you, my sweet Patty <3
ReplyDeleteWhat?? You want bagpipers and whiskey, too?? LOL
ReplyDeleteI know, Shanny Girl. I love you, too.
Absofuckinlutely!!! lol. And tequila! Must. Have. Tequila!
ReplyDeleteMan, we'll have as much fun goin out as we did while we hung around! LOL We'll make 'em jealous! As per the usual :P
That was some kinda post! I hate waiting for scans but right now I've graduated to chest-xray and ct of abdomen and thorax (reminds me of Dr. Suess). And I try not to bury myself every day which is easy for me to say. My son was dx with HIV a few years ago and I cried and howled like a wounded animal (this was prior to my dx). And one day I stopped crying because it felt like all that crying and fretting and time wasting on worry was a way to bury him. Rather than bury him daily, I would pick up the phone and call him. He'll outlive me easy. Look at all that time I could have been dusting. Or reading or drinking!!!
ReplyDeleteMy dx was also 3C uterine, not ovarian though I have plenty of ovarian friends,and thoughts and good wishes for all ovaries. (I'd like to eat an egg since the surgery (about now I mean).
My husband died of colon cancer in 2001 and he did not want to know anything about his cancer either. I think that's how a lot of males *deal* with things, they don't. Getting more support seems like such a smart way to take care of what's left of your feeble brain (just guessing!!)
We have Womencare out here in Santa Cruz and I volunteer as a peer counselor but I will only take people who have a sense of humor and even if they think they are going to croak any second, are still willing to pick out their Costco coffin and music ahead of time. I don't' even think it's negative to think about death and dying. It's nutty not too. And I always say to people who inquire, the only difference between me and you is chemo. Sometimes when i say that, I'm thumping them in the chest.
I am thinking about you and totally get the frustration with the family. My sister was constantly "think positive" and frankly I want to bust people in the nose when they say things like that. It's like I was already thinking positive until you brought up the possibility that what I was thinking was negative? Um, where do we go from here?
That's why we must plan our funerals, pick out PINK and orange urls with horrid scroll work that matches nothing. Make people spend a fortune on the wake or funeral and play music that will make them cry. Or at least be courageous enough to see that we all die. That line about beheading hurt my stomach. I didn't see that coming. Brilliant!
My sweet sissy, I cannot tell you I "understand" because I'm not in your shoes or any of the others that are living with cancer, however, I am on the other side, watching, praying and scared to death of loosing my one and only sister. I do understand your choices and will do exactly what your desires, demands or wishes are when and if the time comes sooner then when your like 90. I know we have been through alot of deaths in our own family, extended as well close friends and such but, when it comes to our "only's" its like having a brick shoved down your throat, not like the one you got when you were diagnosed but severe enough. We all fucking hate it sissy and we all dont want to "accept" it and we all have our ways of "coping and dealing" with it, some better then others. I prayed to God to let it be me instead of my beautiful sister several times and still do because loosing you would blow my heart up. I know very well that people die but i'm angry as hell about it most days, understand some days but I do accept it everyday. I could go on forever telling my thoughts and feelings about this and may do that when we are together because I want you to know my feelings and I need to hear it from you, not read it or hear it from other family members. I love you with my whole heart and soul sissy, nothing, even death, will ever change that.
ReplyDelete