Well, the clock is ticking. 17 days. Honestly, the part that freaks me out is the ventilator. I'm hoping they give me enough meds that I won't remember being on it. "Try not to fight the ventilator" uh-yeah. Last time I checked, breathing was involuntary. Sheesh.
If only it was JUST a surgery. And I mean that. I also have to think about everything that goes along with it. I am the bill-payer, so I have to train the husband to do the bills while I'm out of it. Then there's the matter of WHO will be in Baltimore with me because no one person can just go and stay for the entire 3 weeks (figuring 2 in the hospital and 1 after discharge). Who's going to be there what days and such and where my kids will be. Then disability coverage- blah, blah, blah.
Oh AND I have to make sure I still have a job to come back to when I DO come back... whenever THAT is. I was told that I will still have a job... but I'm needing that in writing because who the hell else is going to hire me? REALLY. I wouldn't blame them. Even though hopefully I will be good to go for quite a while after I heal from this surgery. Yeah- a little chemo and some docs appointments but I shouldn't be needing any more surgeries after this one. Hell, I should have only had 2 surgeries MAX in the first place. I just took the long way around (the dumbass path).
I shouldn't have to worry about any of that other crap by the time all is said and done. And BOY am I ready for it to be done. Wishing I could just take a pill and wake up in 2 months.
So, I'm on the phone pretty much all day today... have I mentioned how much I dislike talking on the phone?!? Well- I DO! I end up making a thousand calls just to leave messages so they can call me back at the worst time possible. Just about every time.
I know- I should not be worried about who's taking care of my girls or the house or whatever and I should focus on getting the surgery and getting better. it just doesn't work that way. I WISH I should just say "Eh, screw it. YOU take care of everything." Well. I COULD. I could say that... it doesn't mean it will get taken care of.
At least if I do it myself or rather, DON'T do it myself- I can only blame one person... ME. If I hand it to someone else to do- I am not permitted to bitch when stuff goes wrong because 'Hey, they were helping you out.'
You can see my delimma now.
grrr.
This only underlines the phrase "Suck it, Cancer."
Monday, August 30, 2010
Wednesday, August 25, 2010
Back to Life
Well- we returned to little 'ol Belpre Ohio Monday evening. New York was everything I had imagined it to be. I know to some of you, going to New York is no big deal. Hell, some of you live there. But to me- it was huge! I've seen the 'IT' cities on both coasts now and I can boast that a little.
It kind of felt like it's were I should've been. When I was in High School, I'd entertained the idea of saving up $500 or so and taking off to LA or NY. I can tell you right now that I don't think I'd have regretted going to NY. I don't know that I'd be a Broadway star... I'd probably be waiting tables still- but who cares? It would be New York!!
We got to the hotel Thursday afternoon (right on the waterfront in Jersey). Saw the Statue Of Liberty Friday, then Jason and I got into Manhattan Friday night- we walked out of Port Authority and the New York Times building was right across the street. We walked most of the way with our mouths hanging open. When I realized I looked like a total dork tourist- I closed my mouth only to plaster on a perma-grin for the rest of the walk. We watched "Wicked" which was awesome! Jason even liked it. Maybe he'll even read the book now.
We had a hell of a time getting BACK to the hotel via bus. Port Authority is confusing as all get out! We got on the LAST BUS to Jersey. I wasn't worried- there's more than one way to get somewhere in NYC. But the husband gets a little freaked anxious when things don't go smoothly. I PREFER things a little interesting. It's how you learn.
Give me a week in NYC alone- I'll have that place figured out.
Saturday we went to Central Park and took the girls for a carriage ride in their pretty dresses. Had a vendor hot dog, then went to FAO Schwartz. We couldn't really get too far past that with all the bags we were carrying- so we took a pedi-bike (or bike rickshaw) back to Port Authority- then bus- then hotel. Room service for dinner.
Sunday- we were toast from all the walking. I ended up in only sandals from Friday afternoon on- ankle blisters were hating on me. We got started late-which I found out is a BAD thing on a Sunday... EVEN in New York.
We took the subway (Jason says "The Sub" like he's all cool- LOL) to Ground Zero. Sobering. You can't really say anything there. You just shake your head a little, take pictures and stare.
We walked around town after that- I actually got to visit a shoe store. Bought one pair. That was the extent of my NY shopping. Guess I'll have to go back for more high fashion. hee hee.
When we got back to the hotel Sunday night- I got bad news from home: Our dog, Boss Man, died in his sleep Saturday evening. He was an old dog, very neurotic and nervous. Every time we left him we were afraid he'd have a heart attack from anxiety. He was staying with a friend of mine and her son. Her son evidently latched right on to Boss and gave him lovins and attention. He was buried right next to my Whirlie Girl on my Dad's property. While it is heartbreaking that we were not there for him in his last days- it is comforting to know that he was getting attention and good care (and roast beef) before he went. And it is a relief to know that he went peacefully. We knew he was getting old and worried that we would have to decide between a $3000 vet bill and poor quality of life or euthanization. I don't like making those decisions. He went the best way I think he could have gone.
Rest In Peace, Big Boss Man. You were a good dog. You and Whirls are missed terribly.
Got back home to more reality Monday night. Laundry... the bane of my existence- really. I have too many "eh" clothes and not enough "WOW" clothes. But too many clothes overall.
Somehow- the girls' room seemed messier than when we left. Probably because I refused to see it and feel the need to clean before we left. No matter.
So after less than 24 hours home I started reviewing the stuff I'll have to do for surgery. Time to crack down on getting organized as far as who will have the kids- who will stay at the hospital with me- who WON'T be there until later- what the hell I'm gonna do in Maryland for a week after I'm discharged and such.
Lots to do... is there enough time to do it?
It kind of felt like it's were I should've been. When I was in High School, I'd entertained the idea of saving up $500 or so and taking off to LA or NY. I can tell you right now that I don't think I'd have regretted going to NY. I don't know that I'd be a Broadway star... I'd probably be waiting tables still- but who cares? It would be New York!!
We got to the hotel Thursday afternoon (right on the waterfront in Jersey). Saw the Statue Of Liberty Friday, then Jason and I got into Manhattan Friday night- we walked out of Port Authority and the New York Times building was right across the street. We walked most of the way with our mouths hanging open. When I realized I looked like a total dork tourist- I closed my mouth only to plaster on a perma-grin for the rest of the walk. We watched "Wicked" which was awesome! Jason even liked it. Maybe he'll even read the book now.
We had a hell of a time getting BACK to the hotel via bus. Port Authority is confusing as all get out! We got on the LAST BUS to Jersey. I wasn't worried- there's more than one way to get somewhere in NYC. But the husband gets a little freaked anxious when things don't go smoothly. I PREFER things a little interesting. It's how you learn.
Give me a week in NYC alone- I'll have that place figured out.
Saturday we went to Central Park and took the girls for a carriage ride in their pretty dresses. Had a vendor hot dog, then went to FAO Schwartz. We couldn't really get too far past that with all the bags we were carrying- so we took a pedi-bike (or bike rickshaw) back to Port Authority- then bus- then hotel. Room service for dinner.
Sunday- we were toast from all the walking. I ended up in only sandals from Friday afternoon on- ankle blisters were hating on me. We got started late-which I found out is a BAD thing on a Sunday... EVEN in New York.
We took the subway (Jason says "The Sub" like he's all cool- LOL) to Ground Zero. Sobering. You can't really say anything there. You just shake your head a little, take pictures and stare.
We walked around town after that- I actually got to visit a shoe store. Bought one pair. That was the extent of my NY shopping. Guess I'll have to go back for more high fashion. hee hee.
When we got back to the hotel Sunday night- I got bad news from home: Our dog, Boss Man, died in his sleep Saturday evening. He was an old dog, very neurotic and nervous. Every time we left him we were afraid he'd have a heart attack from anxiety. He was staying with a friend of mine and her son. Her son evidently latched right on to Boss and gave him lovins and attention. He was buried right next to my Whirlie Girl on my Dad's property. While it is heartbreaking that we were not there for him in his last days- it is comforting to know that he was getting attention and good care (and roast beef) before he went. And it is a relief to know that he went peacefully. We knew he was getting old and worried that we would have to decide between a $3000 vet bill and poor quality of life or euthanization. I don't like making those decisions. He went the best way I think he could have gone.
Rest In Peace, Big Boss Man. You were a good dog. You and Whirls are missed terribly.
Got back home to more reality Monday night. Laundry... the bane of my existence- really. I have too many "eh" clothes and not enough "WOW" clothes. But too many clothes overall.
Somehow- the girls' room seemed messier than when we left. Probably because I refused to see it and feel the need to clean before we left. No matter.
So after less than 24 hours home I started reviewing the stuff I'll have to do for surgery. Time to crack down on getting organized as far as who will have the kids- who will stay at the hospital with me- who WON'T be there until later- what the hell I'm gonna do in Maryland for a week after I'm discharged and such.
Lots to do... is there enough time to do it?
Thursday, August 19, 2010
Being A Part Of It
A somewhat quick note.
Hoping I didn't make anyone mad with the last post. Really.
We have arrived safe and sound in New York. We've settled in to the hotel in Jersey and took a stroll around the block. I can't upload from my phone or I would show you the awesome location. We can see the NY skyline when we walk out the lobby.
I WISH I could take everyone with me, and I wish I could thank everyone who made this possible for me. You have no idea what it means to me...
Hoping I didn't make anyone mad with the last post. Really.
We have arrived safe and sound in New York. We've settled in to the hotel in Jersey and took a stroll around the block. I can't upload from my phone or I would show you the awesome location. We can see the NY skyline when we walk out the lobby.
I WISH I could take everyone with me, and I wish I could thank everyone who made this possible for me. You have no idea what it means to me...
Wednesday, August 18, 2010
Health
It's late. I can't sleep so I'm watching the Golden Girls.
I've been thinking about a question I was asked yesterday. I've been asked the same question before... quite a few times actually. And people hint to it and such, but I think the out of the blue way it was asked caught me off guard.
While I was talking about the surgery and jokingly saying that while I'm on a ventilator after surgery- it will be freaky. That I may have to do charades (uh, is that how you spell it?) and someone will end up giving me a sed-a-give.(The last video I put in made me think even more.)
I was joking about that scene in Young Frankenstein- when I got THE question...
"Are you SPIRITUALLY healthy?"
Uh. What the hell?
That's kinda like asking me if I'm ready to die. At least that is how it srtikes me.
I'm not often speechless- ask anyone who's known me for more than five minutes. But THAT irked me and stopped me in my tracks. There aren't too many things I keep to myself, but that is one of them. That is between me and one other. None of your damn business, thank you very much.
I get why someone would want to ask- but most have the sense to just keep that question to themselves. Kinda like the "Do you have a colostomy bag?" question. If I want you to know- I will tell you. And there are some people who should check themselves before they go asking OTHERS that question.
I'm good with all that. And I will leave it there.
It's funny... the comments and questions I get- having cancer, and being 'terminal.' But shit. What really gives someone the set of sparkling brass balls to ask a terminal cancer patient that question?
I've been thinking about a question I was asked yesterday. I've been asked the same question before... quite a few times actually. And people hint to it and such, but I think the out of the blue way it was asked caught me off guard.
While I was talking about the surgery and jokingly saying that while I'm on a ventilator after surgery- it will be freaky. That I may have to do charades (uh, is that how you spell it?) and someone will end up giving me a sed-a-give.(The last video I put in made me think even more.)
I was joking about that scene in Young Frankenstein- when I got THE question...
"Are you SPIRITUALLY healthy?"
Uh. What the hell?
That's kinda like asking me if I'm ready to die. At least that is how it srtikes me.
I'm not often speechless- ask anyone who's known me for more than five minutes. But THAT irked me and stopped me in my tracks. There aren't too many things I keep to myself, but that is one of them. That is between me and one other. None of your damn business, thank you very much.
I get why someone would want to ask- but most have the sense to just keep that question to themselves. Kinda like the "Do you have a colostomy bag?" question. If I want you to know- I will tell you. And there are some people who should check themselves before they go asking OTHERS that question.
I'm good with all that. And I will leave it there.
It's funny... the comments and questions I get- having cancer, and being 'terminal.' But shit. What really gives someone the set of sparkling brass balls to ask a terminal cancer patient that question?
Monday, August 16, 2010
Countdown.
3 Days to New York. 31 Days until MOAS.
Guess which one I look forward to the most?
It's a shame that both couldn't be wonderful things. Hm... If I reframe it- The surgery is a wonderful thing. It's just a necessary step to take to make things wonderful. Kinda like going to college: putting up with cruddy teachers, homework, sleepless nights, tests and so on to get your degree so you can do what you want. You gotta pay the piper ahead of time I guess.
I must've only put in a down payment and now have a balance. That will be evened up shortly.
My oldest is now officially 4 years old. We had her party last night. Did I get pictures? No. Dammit. I was doing my headless chicken imitation. Hoping enough people around me got pictures and will be nice enough to send them to me. My Aunt Mary was all about making it a big party. She put on the dog for us. (Thanks Mary) Mom, Micki and Misty were LOTS of help. Iris had a blast. I know lots of people don't see the need for a big party for a kid but she really was happy to see everyone there. Plus, it's over the summer and she was WAY lonely- she talked about all the kids she saw there all the way home and through the bedtime routine. I like big parties. Evidently so does she. My only worry is that invitations may be seen as 'present greedy.' But it's not like that- I just figured we had an entire pool for kids to play in... it was paid for, so why would you NOT invite everyone you'd think would have fun? So that's what I did.
I did't get in. I don't know that I will be donning a bathing suit in any kind of crowd ever again. I'll reserve that beautiful sight for immediate family and good friends. (It would actually be more appropriate for enemies... cuz it's more like a punishment than a privilege.)
The Fam leaves for New York on Thursday. Me, the Hubs, the Girls and the Mother-in-law. I am STOKED! I've bought tickets to see "Wicked" on Broadway, Friday night. Have no idea what I'm wearing. Hell- we'll be flying by the seat of our pants the entire weekend. Of course we have specific destinations, but then we have to 'plan' for the unexpected. I don't like a strict itinerary... I may decide to stay in one place longer and may leave another WAY early.
When we get back...it will be a whirlwind- getting the downstairs ready for company. I'm hoping that I'll have a houseguest over Thanksgiving. But before then I may be needing extra help with the girls but I don't want to ship them off all day- every day. It would be nice to have someone to wrangle the girls with me when Jason does the yardwork and such. The Dungeon is a mess and I either need to clean it up or I need to build a wall so that people coming into my house can't look directly at the mess in the den. Hmmm. A wall just might be easier.
I am kind of in limbo at this point. I worry about not being on chemo until surgery. I look at the number of days I have until surgery and it scares me. I am down to 2 pair of pants that fit comfortably. 31 more days. At the same time though, that's a lot of time to get healthy. Baby steps.... I made the mistake of getting over-ambitious with my walking goals. Now I'm sporting a blister on my heel. Poo. And boy, did I hurt the next day. BUT that's not going to be an excuse. I don't want to hurt after walking... Sore GOOD- Hurt BAD. (in my best Frankenstein voice)
Hey- gotta get in walking shape for New York- right? And I don't see any reason to stop after that.
It's a good day. Gonna be a good week. (The exception being the 2 hr plane ride- eek!)
Guess which one I look forward to the most?
It's a shame that both couldn't be wonderful things. Hm... If I reframe it- The surgery is a wonderful thing. It's just a necessary step to take to make things wonderful. Kinda like going to college: putting up with cruddy teachers, homework, sleepless nights, tests and so on to get your degree so you can do what you want. You gotta pay the piper ahead of time I guess.
I must've only put in a down payment and now have a balance. That will be evened up shortly.
My oldest is now officially 4 years old. We had her party last night. Did I get pictures? No. Dammit. I was doing my headless chicken imitation. Hoping enough people around me got pictures and will be nice enough to send them to me. My Aunt Mary was all about making it a big party. She put on the dog for us. (Thanks Mary) Mom, Micki and Misty were LOTS of help. Iris had a blast. I know lots of people don't see the need for a big party for a kid but she really was happy to see everyone there. Plus, it's over the summer and she was WAY lonely- she talked about all the kids she saw there all the way home and through the bedtime routine. I like big parties. Evidently so does she. My only worry is that invitations may be seen as 'present greedy.' But it's not like that- I just figured we had an entire pool for kids to play in... it was paid for, so why would you NOT invite everyone you'd think would have fun? So that's what I did.
I did't get in. I don't know that I will be donning a bathing suit in any kind of crowd ever again. I'll reserve that beautiful sight for immediate family and good friends. (It would actually be more appropriate for enemies... cuz it's more like a punishment than a privilege.)
The Fam leaves for New York on Thursday. Me, the Hubs, the Girls and the Mother-in-law. I am STOKED! I've bought tickets to see "Wicked" on Broadway, Friday night. Have no idea what I'm wearing. Hell- we'll be flying by the seat of our pants the entire weekend. Of course we have specific destinations, but then we have to 'plan' for the unexpected. I don't like a strict itinerary... I may decide to stay in one place longer and may leave another WAY early.
When we get back...it will be a whirlwind- getting the downstairs ready for company. I'm hoping that I'll have a houseguest over Thanksgiving. But before then I may be needing extra help with the girls but I don't want to ship them off all day- every day. It would be nice to have someone to wrangle the girls with me when Jason does the yardwork and such. The Dungeon is a mess and I either need to clean it up or I need to build a wall so that people coming into my house can't look directly at the mess in the den. Hmmm. A wall just might be easier.
I am kind of in limbo at this point. I worry about not being on chemo until surgery. I look at the number of days I have until surgery and it scares me. I am down to 2 pair of pants that fit comfortably. 31 more days. At the same time though, that's a lot of time to get healthy. Baby steps.... I made the mistake of getting over-ambitious with my walking goals. Now I'm sporting a blister on my heel. Poo. And boy, did I hurt the next day. BUT that's not going to be an excuse. I don't want to hurt after walking... Sore GOOD- Hurt BAD. (in my best Frankenstein voice)
Hey- gotta get in walking shape for New York- right? And I don't see any reason to stop after that.
It's a good day. Gonna be a good week. (The exception being the 2 hr plane ride- eek!)
Wednesday, August 11, 2010
I'd like some cheese with my whine.
This is kinda "The Month Off." In more ways than one, really.
Off Chemo- temporarily. And I feel off.
I think it's the anxiety of the surgery. Since I've had a total of 5 abdominal surgeries (2 cesarian sections, 1 hemicolectomy and 2 POS IPHP surgeries) in my life, I can say with certainty that this surgery will suck. Suck BIG TIME because when I had the c-sections I thought those were bad. Then I had the hemicolectomy- THAT sucked. Then the POS, unnecessary, just want my insurance money, practice surgeries sucked even worse.
Dr. Sardi said that those would basically PALE in comparison to the REAL HIPEC surgery.
He said to exercise, smile, take multi-vitamins and 1g of vitamin C to get ready.
I'm just going to be honest with myself. I'm fat. I'm either lazy or tired. Or both. I need a Jillian Michaels to get in my face and talk shit to me to motivate me. I see workout time as selfish, but not selfish if it's improving my health. The days go by so fast and before I know it- it's been forever since I've done anything active. I was putting in a real effort to get healthy after having Vera in December of '08. I had actually started to like jogging. Knocked out of that game by diagnosis/surgery. From there, it was all downhill. Chemo, more surgery, more chemo, little break, another surgery and more chemo. MIND YOU- I gained 30lbs on chemo. I've been off chemo for a bit now. I still taste it. I still get nauseous. I still wretch at the thought of the FEEL of it and at the idea of those disgusting "lunches" they provided for chemo patients.
To say the experience has been traumatizing would be an understatement. I'd like to be around long enough to see this chapter of my life as the "Bad Year(s)." But that really isn't fair to my kids, is it?
"Yeah Vera, the 2 years after you were born totally sucked balls."
I don't know that I would put that in her baby scrapbook... if I ever got around to putting one together. But if I did- they'd probably make some cutesy decals and paper with frownie faces and IV poles right?
Not really fair is it? That she got the crap end of the deal. She gets all the hand-me-downs and a sick Mommy. At least Iris got the best of me for a couple of years. Not that she'll remember them. She'll remember me being sick. I'm just hoping that will spark her interest in becoming a GREAT doctor. Not like the shit one I got stuck with.
It kind of bothers me when people say "Well, you LOOK good." I know I've said it before, but I've heard it a lot lately. What they mean is "You're fatter than I thought you'd be." or "Isn't chemo supposed to make you LOSE weight?"
If one did't know I had cancer- they'd just say "Woa! She's Fat!" But I get the "Look Good" pass because I have cancer.
Can you tell I woke up feeling sorry for myself today? I think it all started with looking at pictures of me that were taken over the last couple of weeks and noticing just HOW fat I've become. Not that it's a beauty contest- but dammit- I'd like to feel good about myself in ONE way. Isn't that part of your mental health? If my insides look like hell- at least the outside could be to the contrary.
Just had to whine.
Off Chemo- temporarily. And I feel off.
I think it's the anxiety of the surgery. Since I've had a total of 5 abdominal surgeries (2 cesarian sections, 1 hemicolectomy and 2 POS IPHP surgeries) in my life, I can say with certainty that this surgery will suck. Suck BIG TIME because when I had the c-sections I thought those were bad. Then I had the hemicolectomy- THAT sucked. Then the POS, unnecessary, just want my insurance money, practice surgeries sucked even worse.
Dr. Sardi said that those would basically PALE in comparison to the REAL HIPEC surgery.
He said to exercise, smile, take multi-vitamins and 1g of vitamin C to get ready.
I'm just going to be honest with myself. I'm fat. I'm either lazy or tired. Or both. I need a Jillian Michaels to get in my face and talk shit to me to motivate me. I see workout time as selfish, but not selfish if it's improving my health. The days go by so fast and before I know it- it's been forever since I've done anything active. I was putting in a real effort to get healthy after having Vera in December of '08. I had actually started to like jogging. Knocked out of that game by diagnosis/surgery. From there, it was all downhill. Chemo, more surgery, more chemo, little break, another surgery and more chemo. MIND YOU- I gained 30lbs on chemo. I've been off chemo for a bit now. I still taste it. I still get nauseous. I still wretch at the thought of the FEEL of it and at the idea of those disgusting "lunches" they provided for chemo patients.
To say the experience has been traumatizing would be an understatement. I'd like to be around long enough to see this chapter of my life as the "Bad Year(s)." But that really isn't fair to my kids, is it?
"Yeah Vera, the 2 years after you were born totally sucked balls."
I don't know that I would put that in her baby scrapbook... if I ever got around to putting one together. But if I did- they'd probably make some cutesy decals and paper with frownie faces and IV poles right?
Not really fair is it? That she got the crap end of the deal. She gets all the hand-me-downs and a sick Mommy. At least Iris got the best of me for a couple of years. Not that she'll remember them. She'll remember me being sick. I'm just hoping that will spark her interest in becoming a GREAT doctor. Not like the shit one I got stuck with.
It kind of bothers me when people say "Well, you LOOK good." I know I've said it before, but I've heard it a lot lately. What they mean is "You're fatter than I thought you'd be." or "Isn't chemo supposed to make you LOSE weight?"
If one did't know I had cancer- they'd just say "Woa! She's Fat!" But I get the "Look Good" pass because I have cancer.
Can you tell I woke up feeling sorry for myself today? I think it all started with looking at pictures of me that were taken over the last couple of weeks and noticing just HOW fat I've become. Not that it's a beauty contest- but dammit- I'd like to feel good about myself in ONE way. Isn't that part of your mental health? If my insides look like hell- at least the outside could be to the contrary.
Just had to whine.
Sunday, August 8, 2010
The Mother Of All Surgeries.
I won't say the title doesn't scare the living shit out of me, because it does.
But I've got a date anyway. So I guess I will hear how brave I am or something. I'm not brave and I can't figure out how the hell I inspire anyone just by getting up and doing what needs to be done. And some days I don't even do that. Don't get me wrong- I WANT to and I'm working on it. But it's humbling and more weird than anything else to hear that I would inspire anyone at all. I'm much more used to hearing how I made someone laugh- that's not inspiring- I mean, it's NICE to make people laugh. It makes me happy to do that. There's nothing better than soomeone genuinely laughing at you being funny on purpose (so that is laughing WITH me, right?). I'm SOOO not used to people being all serious around me. I don't quite know how to respond. I kinda give an awkward smile and say thanks. What else do ya do?
And since you can't tell me to shut up and get on with it, I've managed to get off track within the first 5 sentences of this post.
Sorry about that.
ANYWAY- I do have a date set for the MOAS. September 16. Only 2 days later would have been the fly date for Italy. Instead I will be on my ass with tubes hanging out of me and hopefully under some SERIOUS medication. And actually September 18, 2009 was the date of my first POS (Piece Of Shit) surgery. Otherwise known as IPHP or the POINTLESS surgery. And YES, one day I will get over being bitter but not anytime soon.
I was happy to finally meet THE Dr. Sardi. He seemed to be on top of things and seemed to genuinely care. He said he will be testing my cancer against a variety of chemotherapies to see which it responds best to- and he will use THAT chemo to do the wash. Makes sense to me. For those of you who don't know much about the surgery- It's a 10-18 hour surgery, I will be in the ICU for a day or two, I will be on a ventilator, I will have a catheder, an NG tube and probably a few other tubes for various purposes. The hospital stay is typically 10-14 days. Dr. Sardi said it will feel like he's run over me with a truck... twice. And hearing from others who've had the surgery- it's about right. Woo. Hoo. But at least he's honest. I don't want to go on and on about him because I don't really trust myself anymore. I've shown nothing but poor judgement in picking doctors. The last smart pick was Dr. Cook- my PCP and my daughters' pediatrician. That was 4 years ago. So with all the brain cells I've fried I am trusting those around me to help with decisions.
My sister has been there for 98% of doc appointments and surgeries. She's asked questions and I should have listened to her- or at least turned her loose on Dr. Arnold. (I can think of a lot of people I'd like to turn loose on him.) And I wish I could just take her with me to all my appointments because she's kind of like the voice of "What the Hell?" instead of the shrugging of the shoulders and saying "hm, whatever you want, Doc." when it comes to me- but isn't so aggressive when it comes to her- so I try to be that when she needs it. I was glad she went with me to Baltimore. I hate that I can't trust my own judgement now. I hate that I took up for Doctor Arnold because I THOUGHT he was doing all he could for me-- of course I thought that I wanted to be a ballernia when I was 8 too.
bah! Shut-UP, Rachel.
Anyway- Dr Sardi will be just getting back from a conference in Sweden about the HIPEC, I believe. AND the following Sunday a walk will be held in Baltimore to raise money for and awareness of the HIPEC. (http://www.firstgiving.com/heatit) Odd coincidence. My girls are actually going to be there for the weekend and will be participating in the festivities. I'm still trying to hammer out the logistics of who will be there and when and who will be taking care of the girls and so on. That ALONE is stressful enough.
Until check-in on September 15th, I get to be there and have fun at Iris' birthday party, go to New York for the first time in my life, check out the Warren/Belpre football game and do a few boxing workouts.
My stomach has never looked worse- My self-esteem is on the fritz.... feeling fat and hideous. I want to lose a ton of weight but will have to just aim low because docs don't want me dropping pounds. Kinda wishing someone put me on a strict diet.
Oh- did you catch the New York part? A friend (and many others) has done a bunch of legwork getting me a dream trip to New York with the family. Statue of Liberty, Coney Island and a carriage ride through Central Park for the girls. Time to buy a couple of tiaras.
I am humbled by the kindness of others. I found out that people I know, people I kinda know and people I DON'T know were all conspiring to get me the New York trip I'd been wanting. Yes. People I DON'T know. It's freaky, overwhelming, humbling and amazing at the same time. I can really only hope to pay it back by paying it forward. I hope that the shit I stir to get hospitals to be more accountable and easier to deal with will benefit someone in the future. (And that is just the tip of the 'stir' iceberg... beware)
I don't think of myself as socially awkward, but I haven't fiigured out an elegant way of being on the receiving end of charity. It's been over a year and I still don't know how to NOT be awkward when someone wants to GIVE me something. I always find myself thinking I should have done something different to say thank you when speaking with someone. ugh. I don't ever want ANYONE thinking I'm not grateful- because I don't know how to properly convey my gratitude except to say "Thank you." a million times. Just know- I don't say stuff I don't mean. And those 2 words are the most sincere words that come out of my mouth. I put "Thank you" right up there with telling my girls "I love you." Yeah. It means that much. It may roll off the tongue easily and some people throw both phrases around like nothing, but those are the 2 most important phrases in my opinion. Don't say them if you don't mean them.
That being said: Thank you all for reading and caring. It means more than you know.
But I've got a date anyway. So I guess I will hear how brave I am or something. I'm not brave and I can't figure out how the hell I inspire anyone just by getting up and doing what needs to be done. And some days I don't even do that. Don't get me wrong- I WANT to and I'm working on it. But it's humbling and more weird than anything else to hear that I would inspire anyone at all. I'm much more used to hearing how I made someone laugh- that's not inspiring- I mean, it's NICE to make people laugh. It makes me happy to do that. There's nothing better than soomeone genuinely laughing at you being funny on purpose (so that is laughing WITH me, right?). I'm SOOO not used to people being all serious around me. I don't quite know how to respond. I kinda give an awkward smile and say thanks. What else do ya do?
And since you can't tell me to shut up and get on with it, I've managed to get off track within the first 5 sentences of this post.
Sorry about that.
ANYWAY- I do have a date set for the MOAS. September 16. Only 2 days later would have been the fly date for Italy. Instead I will be on my ass with tubes hanging out of me and hopefully under some SERIOUS medication. And actually September 18, 2009 was the date of my first POS (Piece Of Shit) surgery. Otherwise known as IPHP or the POINTLESS surgery. And YES, one day I will get over being bitter but not anytime soon.
I was happy to finally meet THE Dr. Sardi. He seemed to be on top of things and seemed to genuinely care. He said he will be testing my cancer against a variety of chemotherapies to see which it responds best to- and he will use THAT chemo to do the wash. Makes sense to me. For those of you who don't know much about the surgery- It's a 10-18 hour surgery, I will be in the ICU for a day or two, I will be on a ventilator, I will have a catheder, an NG tube and probably a few other tubes for various purposes. The hospital stay is typically 10-14 days. Dr. Sardi said it will feel like he's run over me with a truck... twice. And hearing from others who've had the surgery- it's about right. Woo. Hoo. But at least he's honest. I don't want to go on and on about him because I don't really trust myself anymore. I've shown nothing but poor judgement in picking doctors. The last smart pick was Dr. Cook- my PCP and my daughters' pediatrician. That was 4 years ago. So with all the brain cells I've fried I am trusting those around me to help with decisions.
My sister has been there for 98% of doc appointments and surgeries. She's asked questions and I should have listened to her- or at least turned her loose on Dr. Arnold. (I can think of a lot of people I'd like to turn loose on him.) And I wish I could just take her with me to all my appointments because she's kind of like the voice of "What the Hell?" instead of the shrugging of the shoulders and saying "hm, whatever you want, Doc." when it comes to me- but isn't so aggressive when it comes to her- so I try to be that when she needs it. I was glad she went with me to Baltimore. I hate that I can't trust my own judgement now. I hate that I took up for Doctor Arnold because I THOUGHT he was doing all he could for me-- of course I thought that I wanted to be a ballernia when I was 8 too.
bah! Shut-UP, Rachel.
Anyway- Dr Sardi will be just getting back from a conference in Sweden about the HIPEC, I believe. AND the following Sunday a walk will be held in Baltimore to raise money for and awareness of the HIPEC. (http://www.firstgiving.com/heatit) Odd coincidence. My girls are actually going to be there for the weekend and will be participating in the festivities. I'm still trying to hammer out the logistics of who will be there and when and who will be taking care of the girls and so on. That ALONE is stressful enough.
Until check-in on September 15th, I get to be there and have fun at Iris' birthday party, go to New York for the first time in my life, check out the Warren/Belpre football game and do a few boxing workouts.
My stomach has never looked worse- My self-esteem is on the fritz.... feeling fat and hideous. I want to lose a ton of weight but will have to just aim low because docs don't want me dropping pounds. Kinda wishing someone put me on a strict diet.
Oh- did you catch the New York part? A friend (and many others) has done a bunch of legwork getting me a dream trip to New York with the family. Statue of Liberty, Coney Island and a carriage ride through Central Park for the girls. Time to buy a couple of tiaras.
I am humbled by the kindness of others. I found out that people I know, people I kinda know and people I DON'T know were all conspiring to get me the New York trip I'd been wanting. Yes. People I DON'T know. It's freaky, overwhelming, humbling and amazing at the same time. I can really only hope to pay it back by paying it forward. I hope that the shit I stir to get hospitals to be more accountable and easier to deal with will benefit someone in the future. (And that is just the tip of the 'stir' iceberg... beware)
I don't think of myself as socially awkward, but I haven't fiigured out an elegant way of being on the receiving end of charity. It's been over a year and I still don't know how to NOT be awkward when someone wants to GIVE me something. I always find myself thinking I should have done something different to say thank you when speaking with someone. ugh. I don't ever want ANYONE thinking I'm not grateful- because I don't know how to properly convey my gratitude except to say "Thank you." a million times. Just know- I don't say stuff I don't mean. And those 2 words are the most sincere words that come out of my mouth. I put "Thank you" right up there with telling my girls "I love you." Yeah. It means that much. It may roll off the tongue easily and some people throw both phrases around like nothing, but those are the 2 most important phrases in my opinion. Don't say them if you don't mean them.
That being said: Thank you all for reading and caring. It means more than you know.
Monday, August 2, 2010
Great Break
I had a fantastic weekend with a few old friends from my Navy days in Fallon, Nevada. It was so great to see them and to sort of forget about the cancer or at least to not worry about it for a while. You never really forget you have cancer. It's not like putting your sunglasses on your head and looking around the house trying to find them before you look in the mirror and realize where they are. Nope- you can't shake that one. BUT you CAN not care about it for a day or two. It's a nice mental break.
We visited some antique stores on Friday and the WWI Museum in Kansas City on Saturday. Other than that we hung at my friend Karen's house and talked, drank a few and watched old videos. (I forgot how totally gross the guys were... too funny.)
It was really great of those who did make it to come. I know it was a lot of work and money to get there. I'm hoping that with a year of advanced noticed- next year's reunion will be bigger by a few people. Karen said my only job until then is to stay alive. I'll do my best, Karen.
In the meantime... surgery. Another. Damn. Surgery. Hopefully it will relieve the swelling belly. In more ways than one I'm sure. Not eating AND removing all the friggin' cancer mucous in my abdomen.
Over the weekend we (or I) invented a new concept called "Nad Rules." Nad is the cat I had in Fallon, Nevada. I had him for a while when I was living with Karen and when I got transfered to Corpus Christi, Texas I couldn't take him with me. Karen still has him- 13 years later- and he looks fantastic. Plus he's one of the coolest cats I know. ANYWAY... He really enjoyed jumping on the pool table to lay down. Well, we were playing pool. So I said "Nad Rules" we play around the cat and whatever he does with the balls is totally legal. If he sinks the 8 ball- HE wins. Somehow it became a term for doing whatever you want or changing the rules to whatever, whenever. So if I use the term- you've all been schooled.
I'm leaving town yet again tomorrow. Setting off for Baltimore and meeting Dr. Sardi. My sister and I head out for the 5 hour trip around noon and staying with a friend. I should get a go date for surgery. And HOPEFULLY it will be soon. The Secretary told me he is scheduling into September... LATE September. That would mean I'd have to go back on chemo. I really hope he will see me as urgent and work me in EARLY!!! (Nad Rules) Like NEXT WEEK early.
When I know- so will you.
We visited some antique stores on Friday and the WWI Museum in Kansas City on Saturday. Other than that we hung at my friend Karen's house and talked, drank a few and watched old videos. (I forgot how totally gross the guys were... too funny.)
It was really great of those who did make it to come. I know it was a lot of work and money to get there. I'm hoping that with a year of advanced noticed- next year's reunion will be bigger by a few people. Karen said my only job until then is to stay alive. I'll do my best, Karen.
In the meantime... surgery. Another. Damn. Surgery. Hopefully it will relieve the swelling belly. In more ways than one I'm sure. Not eating AND removing all the friggin' cancer mucous in my abdomen.
Over the weekend we (or I) invented a new concept called "Nad Rules." Nad is the cat I had in Fallon, Nevada. I had him for a while when I was living with Karen and when I got transfered to Corpus Christi, Texas I couldn't take him with me. Karen still has him- 13 years later- and he looks fantastic. Plus he's one of the coolest cats I know. ANYWAY... He really enjoyed jumping on the pool table to lay down. Well, we were playing pool. So I said "Nad Rules" we play around the cat and whatever he does with the balls is totally legal. If he sinks the 8 ball- HE wins. Somehow it became a term for doing whatever you want or changing the rules to whatever, whenever. So if I use the term- you've all been schooled.
I'm leaving town yet again tomorrow. Setting off for Baltimore and meeting Dr. Sardi. My sister and I head out for the 5 hour trip around noon and staying with a friend. I should get a go date for surgery. And HOPEFULLY it will be soon. The Secretary told me he is scheduling into September... LATE September. That would mean I'd have to go back on chemo. I really hope he will see me as urgent and work me in EARLY!!! (Nad Rules) Like NEXT WEEK early.
When I know- so will you.
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