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.
Thursday, July 29, 2010
Short update
I titled this post before I started typing- I'm not changing it no matter how long this post ends up being.
I SHOULD be doing something more productive than this blog right now but had to give an update.
I am busy with paperwork, chores, packing, being a mommy, being a wife, an air talent (for what it's worth) and so on.
I've packed and am MOSTLY ready to head to the airport for Missouri. Leaving the house at noon. Plane leaves @ 3:40. Starbucks is screaming my name! I'm excited to see my navy buddies. Only a few can make it- but it will be fun, none-the-less.
Today I need to make a couple of phone calls to get my pathology slides to Dr. Sardi in Baltimore (with whom I have an appointment on Wednesday then HOPEFULLY scheduling my MOAS). I have to call OSUMC to get them though and I think my name is one the 'tainted' list because of what I've said about them here on this blog. They never did fax my records to Dr. Sardi (that I am aware of) even with the "ASAP" put on the request/release form.
I ended up calling my personal primary care provider's office where it's my Doc, her nurse and the secretary. It's WAY more personal and I KNOW I can rely on them. I asked Brooke to contact OSUMC to get my records faxed to HER so I can have all my stuff centralized and get copies for myself. They will fax whatever I need to whoever I need them faxed to. Plus, she id digitizing my records. Yay for technology.
So I will have the rest of my records sent to Dr. Sardi and Dr. Nemunaitis in Dallas. My uncle suggested him because he is in cancer research. Things like gene therapy, cancer immunizations and so on. So I'd imagine a visit to the Lone Star State is probably in my near future.
I was happy to get the phone call from Dr. Sardi's office. "Dr. Sardi thinks he can help you and would like to meet you."
That's music to my ears.
I SHOULD be doing something more productive than this blog right now but had to give an update.
I am busy with paperwork, chores, packing, being a mommy, being a wife, an air talent (for what it's worth) and so on.
I've packed and am MOSTLY ready to head to the airport for Missouri. Leaving the house at noon. Plane leaves @ 3:40. Starbucks is screaming my name! I'm excited to see my navy buddies. Only a few can make it- but it will be fun, none-the-less.
Today I need to make a couple of phone calls to get my pathology slides to Dr. Sardi in Baltimore (with whom I have an appointment on Wednesday then HOPEFULLY scheduling my MOAS). I have to call OSUMC to get them though and I think my name is one the 'tainted' list because of what I've said about them here on this blog. They never did fax my records to Dr. Sardi (that I am aware of) even with the "ASAP" put on the request/release form.
I ended up calling my personal primary care provider's office where it's my Doc, her nurse and the secretary. It's WAY more personal and I KNOW I can rely on them. I asked Brooke to contact OSUMC to get my records faxed to HER so I can have all my stuff centralized and get copies for myself. They will fax whatever I need to whoever I need them faxed to. Plus, she id digitizing my records. Yay for technology.
So I will have the rest of my records sent to Dr. Sardi and Dr. Nemunaitis in Dallas. My uncle suggested him because he is in cancer research. Things like gene therapy, cancer immunizations and so on. So I'd imagine a visit to the Lone Star State is probably in my near future.
I was happy to get the phone call from Dr. Sardi's office. "Dr. Sardi thinks he can help you and would like to meet you."
That's music to my ears.
Sunday, July 25, 2010
busy
Time seems to fly just when I don't want it to. The last 2 weeks seem like a blur. It's almost August and it's almost GO time. No, I don't have a date for surgery or even who will be doing it. I would imagine that if Dr. Sardi takes me- Ii will go with him. Hopefully he will be able to navigate amongst the scar tissue and mucous and possibly avoid a colostomy bag. Yes, Yes. I know. At least I'll be alive. And that's all I'm going to say about that.
So I was in Cleveland on Tuesday and Pittsburgh Saturday. Totally different reasons. Thursday night Iris spent the night at Micki's (my sister) and then decided on the way back from Pittsburgh Saturday evening that she wanted to stay there again. Which makes me happy- a little sad because it's a night away from her, but I like seeing that if anything happens to me that she's got a bond with Micki. I hope Vera has the same bond with her. We visited my Dad this evening he took Iris for a ride on his new mower- she might as well have been on a camel, she was gleaming! I love that the girls adore him.
This week is going to be hectic. My co-host (the main guy) on the morning show is off for the week and I will be flying solo there. Then helping out with Iris' Vacation Bible School- then boxing Tues and Weds to get the frustration out. Yep- Fat Girl Boxing. Well- just the training. I don't think it would be particularly wise to get in a ring with my messed up midsection and no omentum fat. But the workout will do me good.
THEN Thursday I'll be flying to Missouri for a 'reunion' with my Navy buds. I am looking forward to it... people I haven't seen in 13 years!
And even though I'm not dead- THEY haven't forgotten about me.
Smiles.
So I was in Cleveland on Tuesday and Pittsburgh Saturday. Totally different reasons. Thursday night Iris spent the night at Micki's (my sister) and then decided on the way back from Pittsburgh Saturday evening that she wanted to stay there again. Which makes me happy- a little sad because it's a night away from her, but I like seeing that if anything happens to me that she's got a bond with Micki. I hope Vera has the same bond with her. We visited my Dad this evening he took Iris for a ride on his new mower- she might as well have been on a camel, she was gleaming! I love that the girls adore him.
This week is going to be hectic. My co-host (the main guy) on the morning show is off for the week and I will be flying solo there. Then helping out with Iris' Vacation Bible School- then boxing Tues and Weds to get the frustration out. Yep- Fat Girl Boxing. Well- just the training. I don't think it would be particularly wise to get in a ring with my messed up midsection and no omentum fat. But the workout will do me good.
THEN Thursday I'll be flying to Missouri for a 'reunion' with my Navy buds. I am looking forward to it... people I haven't seen in 13 years!
And even though I'm not dead- THEY haven't forgotten about me.
Smiles.
Friday, July 23, 2010
An Inconvenient Cancer
I will start by asking a question... Isn't faxing medical records, no matter HOW thick your file is, to specialists at the request of a patient part of being a medical office? Just asking. I would think there wouldn't be any problem with the Strecker Cancer Center faxing records to a surgeon or a MILLION surgeons so I can choose who will give me a much needed surgery. But I got a call yesterday asking me what particular records I wanted faxed because they couldn't send all my records because my file was so thick. Or to come up and get copies of my record to fax myself. Hmm. Maybe my file is thick because I have a cancer that hasn't been controlled yet and I need more treatment. What a novel thought.
I know I do sound like a total bitch now- I'm usually a 'go with the flow' kinda girl. I only stir shit when I feel it is extremely justified. I swear. This time- it just got under my skin and it took a lot not to go total bitch when I was addressing the issue.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My faxed letter went like this:
To whom it may concern:
Please fax any and ALL of my medical records ASAP to Dr. Sardi at XXX-XXX-XXXX.
And please mail any and ALL of my CT scans ASAP to:
Dr. Sardi
XXXXXXXXX
Baltimore, MD XXXXX
and
Dr. Chalikonda
XXXXXXXX
Cleveland, OH XXXXX
and to me
Rachel
XXXXXXXXXXXX
Belpre, OH XXXXX
Thank you.
Rachel
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now it COULD be that I was using too many X's(har har) but she said, "you don't have a fax number for Dr. Chalikonda."
Yes, I know.
But not like she was going to fax my entire file to him either because I was asked to select which files I wanted them to send because my file was so thick. Dr. Chalikonda only needs my CT scans because the disc I was given to take to him didn't have my recent CT scans on it... only the CT I had in May of '09 before diagnosis. (another screwup) I hand carried my other records.
hmmm. Any and ALL didn't mean anything I guess.
I'm losing my cool with anyone who gives me the slightest amount of guff over this shit because it's not hard to comprehend. And it's no fricken skin off anyone's nose to fax a big file. No one is going to get a pay cut to make up for the paper costs. It's a couple of extra minutes. Sorry if my cancer is inconviencing ANYONE in the medical field. Damnit!
I'm learning as I go. I will have all my files in hand AND have files at my physician's office. She and her staff seem to be the only ones willing to do whatever it is I need done. (Thanks Teri, Jamie and Brooke)
As I open up my naive eyes, I'm seeing that you have got to be in EVERYONE'S ASSES to get what you need or want done. I'm not used to doing that to anyone other than my husband, kids and younger siblings.
Hell, I can't even haggle in Tijuana. I looked like a sucker because I'd pay tag price for whatever I wanted there. My friend Karen gave me crap because I paid $20 for a hand carved marble chess set. She swore she could get them to come down to $12.
I'm going to have to turn on "The Bitch" for people to respond just like I would if it was one of my daughters in this situation. That's how I've got to approach this. I wouldn't take any shit if people were dragging their feet getting stuff done for one of my kids- so I shouldn't take any shit if people are doing it to me.
It's exhausting.
So, if this was turned into a book... this would be the angry chapters.
p.s. Hello San Antonio.
I know I do sound like a total bitch now- I'm usually a 'go with the flow' kinda girl. I only stir shit when I feel it is extremely justified. I swear. This time- it just got under my skin and it took a lot not to go total bitch when I was addressing the issue.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My faxed letter went like this:
To whom it may concern:
Please fax any and ALL of my medical records ASAP to Dr. Sardi at XXX-XXX-XXXX.
And please mail any and ALL of my CT scans ASAP to:
Dr. Sardi
XXXXXXXXX
Baltimore, MD XXXXX
and
Dr. Chalikonda
XXXXXXXX
Cleveland, OH XXXXX
and to me
Rachel
XXXXXXXXXXXX
Belpre, OH XXXXX
Thank you.
Rachel
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Now it COULD be that I was using too many X's(har har) but she said, "you don't have a fax number for Dr. Chalikonda."
Yes, I know.
But not like she was going to fax my entire file to him either because I was asked to select which files I wanted them to send because my file was so thick. Dr. Chalikonda only needs my CT scans because the disc I was given to take to him didn't have my recent CT scans on it... only the CT I had in May of '09 before diagnosis. (another screwup) I hand carried my other records.
hmmm. Any and ALL didn't mean anything I guess.
I'm losing my cool with anyone who gives me the slightest amount of guff over this shit because it's not hard to comprehend. And it's no fricken skin off anyone's nose to fax a big file. No one is going to get a pay cut to make up for the paper costs. It's a couple of extra minutes. Sorry if my cancer is inconviencing ANYONE in the medical field. Damnit!
I'm learning as I go. I will have all my files in hand AND have files at my physician's office. She and her staff seem to be the only ones willing to do whatever it is I need done. (Thanks Teri, Jamie and Brooke)
As I open up my naive eyes, I'm seeing that you have got to be in EVERYONE'S ASSES to get what you need or want done. I'm not used to doing that to anyone other than my husband, kids and younger siblings.
Hell, I can't even haggle in Tijuana. I looked like a sucker because I'd pay tag price for whatever I wanted there. My friend Karen gave me crap because I paid $20 for a hand carved marble chess set. She swore she could get them to come down to $12.
I'm going to have to turn on "The Bitch" for people to respond just like I would if it was one of my daughters in this situation. That's how I've got to approach this. I wouldn't take any shit if people were dragging their feet getting stuff done for one of my kids- so I shouldn't take any shit if people are doing it to me.
It's exhausting.
So, if this was turned into a book... this would be the angry chapters.
p.s. Hello San Antonio.
Wednesday, July 21, 2010
Tuesday, July 20, 2010
Not done yet.
I spoke with Dr Chalikonda today. I think he's interested. He's done around 140 of the HIPECs. But again... a ball was dropped when I gave him my CT scans from Marietta Memorial the only scans on it was the first one I had... PRE DIAGNOSIS. Now I've had AT LEAST 5 effin' CT scans. 3 of them at Marietta Memorial. One in May of last year, one from May this year before I started FOLFIRI and one from LAST THURSDAY! The last two were not on the disc.
Did I mention that I forgot the disc at home and didn't realize it until we were an hour from home? I turned around to get them and got back to the 3 hour drive. Only to find out the disc was damn useless.
So, though he seems interested, he couldn't tell me anything like "Yes, I can treat you. We can do this, this and this." until he see some effin' scans.
What the Hell? Am I just destined to be an example of what not to do? One of those- 'If Only...' stories.
I THOUGHT Dr. Arnold WAS a specialist when he was treating me. I thought I was getting the HIPEC surgery. Hell- Doctor Goodman said plainly... "I've never heard of anyone doing that procedure." after I told him what Dr Arnold did.
DAMMIT!
Are the stars EVER going to line up for me? It's so hard to be proactive when you can't concentrate, your brain is fried, you feel like the whole world is on your shoulders and you're lost half the time. I wish I had a little birdie on my shoulder that had all the answers. "Raa, make sure all the scans are on the discs. Raa." "Raa, your surgeon sucks. Ra" "Raa...This guy is the one.. Raa." "Now gimme a damn cracker."
That's an idea.
At the PMP Bellybuttons Club page I was getting hounded by some lady who was basically calling me a liar when I told her what I'd been having done. (one reason I abandoned the site until recently.)
Anyway- it is VERY possible I will be coming out of the HIPEC surgery with a colostomy bag. Hmm, that's SUPER! Can't wait for THAT! What 34 year old woman wouldn't feel complete without a bag of poo hanging off her stomach? News just gets better and better. I'm certainly NOT putting down anyone who HAS one, but seriously- it can't be fun. That being said- choosing between death and a colostomy bag.. the choice is easy. Gimme the bag, thank you.
Dr. Chalikonda also said that the odds of getting all the tumor out after 3 surgeries aren't good. Thank you again Dr. Arnold. Oh, and that doing the Chemo infusion without removing the tumor... pointless. I don't think a chick with a simple 2 year degree in Mass Media from a community college should be cluing you in on that. Just saying.
I guess I will be the inspiration for others to do their homework. And in the meantime hope that my screwups haven't cost me years of my life.
Next for me. Dr. Sardi in Baltimore... MAKING SURE HE GETS ALL MY SCANS and all my records before I drive 5 hours to see him. I was told that he usually schedules surgeries 4 weeks out.
Of course- by now I've realized that i really don't have any questions for Dr. Sardi except for "Will you treat me?" and "when can you do it?"
Regrets, I've had a few.......
Did I mention that I forgot the disc at home and didn't realize it until we were an hour from home? I turned around to get them and got back to the 3 hour drive. Only to find out the disc was damn useless.
So, though he seems interested, he couldn't tell me anything like "Yes, I can treat you. We can do this, this and this." until he see some effin' scans.
What the Hell? Am I just destined to be an example of what not to do? One of those- 'If Only...' stories.
I THOUGHT Dr. Arnold WAS a specialist when he was treating me. I thought I was getting the HIPEC surgery. Hell- Doctor Goodman said plainly... "I've never heard of anyone doing that procedure." after I told him what Dr Arnold did.
DAMMIT!
Are the stars EVER going to line up for me? It's so hard to be proactive when you can't concentrate, your brain is fried, you feel like the whole world is on your shoulders and you're lost half the time. I wish I had a little birdie on my shoulder that had all the answers. "Raa, make sure all the scans are on the discs. Raa." "Raa, your surgeon sucks. Ra" "Raa...This guy is the one.. Raa." "Now gimme a damn cracker."
That's an idea.
At the PMP Bellybuttons Club page I was getting hounded by some lady who was basically calling me a liar when I told her what I'd been having done. (one reason I abandoned the site until recently.)
Anyway- it is VERY possible I will be coming out of the HIPEC surgery with a colostomy bag. Hmm, that's SUPER! Can't wait for THAT! What 34 year old woman wouldn't feel complete without a bag of poo hanging off her stomach? News just gets better and better. I'm certainly NOT putting down anyone who HAS one, but seriously- it can't be fun. That being said- choosing between death and a colostomy bag.. the choice is easy. Gimme the bag, thank you.
Dr. Chalikonda also said that the odds of getting all the tumor out after 3 surgeries aren't good. Thank you again Dr. Arnold. Oh, and that doing the Chemo infusion without removing the tumor... pointless. I don't think a chick with a simple 2 year degree in Mass Media from a community college should be cluing you in on that. Just saying.
I guess I will be the inspiration for others to do their homework. And in the meantime hope that my screwups haven't cost me years of my life.
Next for me. Dr. Sardi in Baltimore... MAKING SURE HE GETS ALL MY SCANS and all my records before I drive 5 hours to see him. I was told that he usually schedules surgeries 4 weeks out.
Of course- by now I've realized that i really don't have any questions for Dr. Sardi except for "Will you treat me?" and "when can you do it?"
Regrets, I've had a few.......
Monday, July 19, 2010
Tired of being Optimistic.
Kind of appropriate that this is my 100th post...........
It's been over a year since dignosis. Approaching one year since the start of the hell that is chemotherapy.
In less than 18 months I've had 3 major surgeries, 1 minor surgery, almost 2 months total in a hospital, 18 weeks of recovery, an endoscopy, a colonoscopy, 5 CT scans, 15 rounds of chemotherapy and endless needle sticks.
To this point I was trying to be a little PollyAnna and trying to be totally positive- taking up for anyone doing my treatment.
I really didn't want to believe that someone might be dropping the ball when it came to my treatment. It would piss me off to hear "Do they know what they're doing?" Because 'Of COURSE' they know what they're doing. Why on earth would I be here getting sliced and diced? Surely not for the fun of it. And Don't Call me Shirley.
The reason this is all pouring out now is because it's like a slap to the face... a cold shower... a shot of double espresso... I'm going to miss out on a LOT of shit I had planned because I put my trust in someone who didn't deserve it. I should have asked more questions. I SHOULD have taken a page from my almost 4 year old's book and asked "Why?" about a million more times than I needed to. Why were people diagnosed AFTER me getting ONE MOAS and I was getting the 'Diet' version of it... TWICE?!? I can promise you next time I go to OSUMC, I'll be taking a shark with me. (Amber) And I'll let HER ask the questions... I'll be taking notes. I'm tired of being intimidated by big shots. Tired of just going along with whatever anyone wants to do to me in hopes that SOMEONE will eventually have the right answer. Cancer patients BEWARE.
I REALLY thought I was getting top notch care. That the lack of answers was because this cancer was tricky and rare and blah, blah, blah. Bullshit.
There were answers, there ARE answers and there are more answers than "You should look into clinical trials."
Thanks for screwing up my body to the point that all the scar tissue may cause complications with the surgery I should have gotten a year ago that I will be getting soon. I'm sure it will be good for my HEALTHY insides to have been subjected to chemo washes THREE times instead of ONE or even TWO.
I WOULD have been fine if after the first surgery I was told "You will need a much more involved surgery that we can't do here." Since they pretty much knew that then. But nope- All I was told was "There is too much tumor to remove." Again- BULLSHIT. THERE ARE SURGEONS WHO DO REMOVE ALL THE TUMOR... There was too much tumor for YOU to remove. I know that now.
How DARE you fuck with my life?
To lighten the mood a bit... simply insert my OLD surgeon's name where Clark's Boss's name is....
It's been over a year since dignosis. Approaching one year since the start of the hell that is chemotherapy.
In less than 18 months I've had 3 major surgeries, 1 minor surgery, almost 2 months total in a hospital, 18 weeks of recovery, an endoscopy, a colonoscopy, 5 CT scans, 15 rounds of chemotherapy and endless needle sticks.
To this point I was trying to be a little PollyAnna and trying to be totally positive- taking up for anyone doing my treatment.
I really didn't want to believe that someone might be dropping the ball when it came to my treatment. It would piss me off to hear "Do they know what they're doing?" Because 'Of COURSE' they know what they're doing. Why on earth would I be here getting sliced and diced? Surely not for the fun of it. And Don't Call me Shirley.
The reason this is all pouring out now is because it's like a slap to the face... a cold shower... a shot of double espresso... I'm going to miss out on a LOT of shit I had planned because I put my trust in someone who didn't deserve it. I should have asked more questions. I SHOULD have taken a page from my almost 4 year old's book and asked "Why?" about a million more times than I needed to. Why were people diagnosed AFTER me getting ONE MOAS and I was getting the 'Diet' version of it... TWICE?!? I can promise you next time I go to OSUMC, I'll be taking a shark with me. (Amber) And I'll let HER ask the questions... I'll be taking notes. I'm tired of being intimidated by big shots. Tired of just going along with whatever anyone wants to do to me in hopes that SOMEONE will eventually have the right answer. Cancer patients BEWARE.
I REALLY thought I was getting top notch care. That the lack of answers was because this cancer was tricky and rare and blah, blah, blah. Bullshit.
There were answers, there ARE answers and there are more answers than "You should look into clinical trials."
Thanks for screwing up my body to the point that all the scar tissue may cause complications with the surgery I should have gotten a year ago that I will be getting soon. I'm sure it will be good for my HEALTHY insides to have been subjected to chemo washes THREE times instead of ONE or even TWO.
I WOULD have been fine if after the first surgery I was told "You will need a much more involved surgery that we can't do here." Since they pretty much knew that then. But nope- All I was told was "There is too much tumor to remove." Again- BULLSHIT. THERE ARE SURGEONS WHO DO REMOVE ALL THE TUMOR... There was too much tumor for YOU to remove. I know that now.
How DARE you fuck with my life?
To lighten the mood a bit... simply insert my OLD surgeon's name where Clark's Boss's name is....
Sunday, July 18, 2010
The Good, The Bad and The Ugly
I talked to Dr. Cawley yesterday.
My CT scan showed that the three 'tumors' (basically clumps of mucous) amongst my small intestine have shrunk slightly since May when I started the new chemo. The layer of mucous hanging out on my liver and other places, no change. OK news.
But, she doesn't think I should wait until October to have the MOAS. She thinks I should have the surgery as soon as possible. Meaning the first of August- 4 week minimum wait after Avastin. That means... No Missouri, I probably won't be present for Iris' birthday party, no New York and probably no Italy.
Honestly, I'm pissed at the world. I didn't want to go on a rant, but if I'd have had the NECESSARY surgery 1 year ago... 4 months ago- I wouldn't be dealing with this SHIT right now. Instead of doing 2 minimal surgeries and not removing the cancer. I COULD have had ONE surgery that would remove all the cancer. If I'd have just known that the surgeries weren't INTENDED to remove ALL the cancer. They don't even do the HIPEC surgery @ OSUMC. The whole time I thought they would remove all the cancer and when they came back to say "There was too much cancer to remove." I thought- "I'm screwed." The fact was: They don't do the surgery I REALLY need(ed) there. That it would be more involved. A year older and much wiser having taken the idiot path. Possibly at the cost of my life. I would like to think my surgeon did all he could do. But that doesn't take away from the fact that he more than likely has heard of the HIPEC surgery with TOTAL debulking before the chemo wash- and he didn't say that's what I need, didn't suggest other surgeons, other procedures, didn't point me in the right direction. Just said I should look into clinical trials. And the Oncologist at OSUMC didn't say shit either.
They SHOULD have realized that they were in over their heads and passed me to someone better able to TREAT ME. I don't know if it's a pride thing or an ignorance thing... Doesn't matter. I'm feeling SCREWED. It's my LIFE and they SCREWED ME! I should get a damn refund and should punch SOMEONE in the friggin' face.
If I'd have gone directly to the Cleveland Clinic or another hospital that HAS the HIPEC, I wouldn't be in this position right now, maybe I wouldn't have had to do 15 fucking rounds of chemo and have had ineffective surgeries.
I'm pissed as hell... And I've held my tongue about it, thinking I didn't want to slam on amy doctors... But this last year of 'treatment' has been a waste because I didn't know any better and the surgeon that DID was irresponsible and not forthcoming with information. Fucking around with MY LIFE is not something I'm going to be quiet about.
My CT scan showed that the three 'tumors' (basically clumps of mucous) amongst my small intestine have shrunk slightly since May when I started the new chemo. The layer of mucous hanging out on my liver and other places, no change. OK news.
But, she doesn't think I should wait until October to have the MOAS. She thinks I should have the surgery as soon as possible. Meaning the first of August- 4 week minimum wait after Avastin. That means... No Missouri, I probably won't be present for Iris' birthday party, no New York and probably no Italy.
Honestly, I'm pissed at the world. I didn't want to go on a rant, but if I'd have had the NECESSARY surgery 1 year ago... 4 months ago- I wouldn't be dealing with this SHIT right now. Instead of doing 2 minimal surgeries and not removing the cancer. I COULD have had ONE surgery that would remove all the cancer. If I'd have just known that the surgeries weren't INTENDED to remove ALL the cancer. They don't even do the HIPEC surgery @ OSUMC. The whole time I thought they would remove all the cancer and when they came back to say "There was too much cancer to remove." I thought- "I'm screwed." The fact was: They don't do the surgery I REALLY need(ed) there. That it would be more involved. A year older and much wiser having taken the idiot path. Possibly at the cost of my life. I would like to think my surgeon did all he could do. But that doesn't take away from the fact that he more than likely has heard of the HIPEC surgery with TOTAL debulking before the chemo wash- and he didn't say that's what I need, didn't suggest other surgeons, other procedures, didn't point me in the right direction. Just said I should look into clinical trials. And the Oncologist at OSUMC didn't say shit either.
They SHOULD have realized that they were in over their heads and passed me to someone better able to TREAT ME. I don't know if it's a pride thing or an ignorance thing... Doesn't matter. I'm feeling SCREWED. It's my LIFE and they SCREWED ME! I should get a damn refund and should punch SOMEONE in the friggin' face.
If I'd have gone directly to the Cleveland Clinic or another hospital that HAS the HIPEC, I wouldn't be in this position right now, maybe I wouldn't have had to do 15 fucking rounds of chemo and have had ineffective surgeries.
I'm pissed as hell... And I've held my tongue about it, thinking I didn't want to slam on amy doctors... But this last year of 'treatment' has been a waste because I didn't know any better and the surgeon that DID was irresponsible and not forthcoming with information. Fucking around with MY LIFE is not something I'm going to be quiet about.
Friday, July 16, 2010
Random Ramblings
This week has been oddly normal. Kinda. I'm still tired as hell and I still have a hard time sleeping. Gonna try some melatonin as a friend suggested. I loathe using Ambien.
I got all my crap done for my passport- and so I wait. I actually COOKED a bit. Evenings are tough because I guess I am slow with cooking... or it takes longer than I would like it to because by the time I get the girls home and get dinner ready- it's 7:30 (I know this because Jeopardy is on.. hee hee). Then it's the mad rush to get the girls to eat, then get ready for bed. But it would probably be the same situation whether I had cancer or not. So I embrace the madness. We have been giving the girls showers (I usually just get in there with them) because we can't use our tub- we need a whole new fixture put in because the other one is OLD and leaky and ruining the tilework. So sometimes the bedtime routine is hectic. Thank goodness for my Mother-in-law for giving the girls baths sometimes when she has them during the day.
I emceed a "Little Miss, Mister and Junior Miss" Pageants for the local 'Big Deal' fair on Tuesday. I thought I'd do alright but occasionally got a kid's name wrong. There were 30 girls in the youngest group- I had a paper with their names on it- but I didn't want to be staring at the paper the whole time. Well, chemo brain kicked in and I got a couple wrong on the way out. I didn't think it was that big of a deal but one of the women running the pageant would yell up the stage the CORRECT name at me. By the 3rd time she did it I was ready to either walk off the damn stage or yell back.
Number one- it was my first time in like 5 years doing something even REMOTELY like that... Two- it's an honest mistake even for someone NOT on chemo. But I also forgot to mention another pageant winner that was present and I forgot to make an announcement they'd asked me to do. I realized that as I was walking to my car.
I don't expect anyone to know my story and I'm not going to explain it to everybody but I was nervous enough being fat and up in front of people, but being fat AND stupid was a little much. Keep it together, keep it together. Suck it up Rachel. I fought back tears on the way home- telling myself I was being too sensitive.
Funny thing though- I was so nervous in front of the Judges and organizers of the fair I didn't really get a good vibe talking to them. It was probably just me. But I needed some hand sanitizer and no one there had any so I walked to the National Guard tent to see if they had any and I had ZERO problem talking to the guys there. Not flirting thank you- I'm just more comfortable around guys. I don't feel like they're sizing me up. I'm just there and can converse.
I Digress....
I had a CT scan yesterday (okay, not so normal) it was supposed to be Wednesday but I had it in my head that it was Thursday. I was cringing at the fact that I would have to do the contrast again... barf-o-rama. They worked me in. Not like the CT room is jam-packed in little ol' Marietta, Ohio. I can't say I'm a fan of the taste od saline and the IV contrast. Would be more tolerable if I didn't get it so often.
Oh, I wanted to give a little more detail about the "Not doing chemo." I defintely want to clarify that I'm not giving up by any means. 15 rounds of chemo and 2 chemo surgeries- that's what I've had in less than a year. And all signs point to "Only the surgeries have done any good" and those haven't done much at that. It is DISCOURAGING to endure the sweats, nausea, fatigue, mood swings, feelings of inadequacy, mental strain and so on that goes with chemo only to be told it's doing no good.
I'm not 100% positive it's NOT doing any good, but I don't know that if I could put the energy I WOULD have if I wasn't on the chemo toward eating healthier and being active if that would do just as good. BUT then I think "Well, what would my situation be if I hadn't done any chemo at all?" The CT scans from this week will tell whether this particular chemo has had any effect. There is a ton of research suggesting that IV chemo has little to NO effect on this type of cancer. It's not like other cancers where it's IN an organ or IN the blood or IN the lymph nodes. It's floating around the juices in my abdomen, landing on the outside of the organs. So it's suggested that the amount of chemo it would take to actually have a real effect on THOSE cancer cells would be toxic to the person.
You second guess every decision you make. Will THIS kill me? Will THIS save me? Do I care at this very moment? Yeah, I think that too.
Seeds of doubt. That's all it takes to wreck me. Should I have been a vegetarian my entire life? Would I still be where I am? My cancer is from a genetic mutation... so is it my fault? How the hell was I supposed to know? It's hard enough to know you have cancer and that it may kill you, but then almost every book you pick up tells you how "Colon cancer is the easiest cancer to prevent." Yeah- My ASS. Pun intended. So I did this to myself, huh? They NEVER mention Lynch Syndrome and it's factor to the equasion. It's all YOUR fault and WE'RE gonna rub it in. HA HA!
And on another note... I'm not a fan of the "Medical community conspiracy" to squeeze money out of you instead of using that "Cure to Cancer" they've got hidden away and won't use because cancer is a big money maker. Sorry to anyone who believes this- but it just PISSES ME OFF to hear. So please don't bring it up to me. I know it's a possibility.. however remote.. but I don't want to hear it. I'm not keeping myself in the dark, IF there is a secret cure for cancer- how the hell am I supposed to get it? So on my deathbed I'm supposed to be mad at the entire medical community or the insurance company or the government? I'm not going to walk around- pissed off at the world because there is a THEORY that cancer drugs are SO lucrative that "they" (whoever THEY might be)are keeping the cure from the general population. I put that in the same category as "The Moon landing was filmed in a basment in Hollywood." It's possible... but where is the proof either way? And I could almost promise you that no cancer patient wants to hear that shit.
I have to go with what is available to me.
What and Who is right? Who knows? If I die, does that mean I picked the wrong path to follow? So if I go Vegan and exercise like a fiend and still die, what does that mean?
What's the right answer?
I got all my crap done for my passport- and so I wait. I actually COOKED a bit. Evenings are tough because I guess I am slow with cooking... or it takes longer than I would like it to because by the time I get the girls home and get dinner ready- it's 7:30 (I know this because Jeopardy is on.. hee hee). Then it's the mad rush to get the girls to eat, then get ready for bed. But it would probably be the same situation whether I had cancer or not. So I embrace the madness. We have been giving the girls showers (I usually just get in there with them) because we can't use our tub- we need a whole new fixture put in because the other one is OLD and leaky and ruining the tilework. So sometimes the bedtime routine is hectic. Thank goodness for my Mother-in-law for giving the girls baths sometimes when she has them during the day.
I emceed a "Little Miss, Mister and Junior Miss" Pageants for the local 'Big Deal' fair on Tuesday. I thought I'd do alright but occasionally got a kid's name wrong. There were 30 girls in the youngest group- I had a paper with their names on it- but I didn't want to be staring at the paper the whole time. Well, chemo brain kicked in and I got a couple wrong on the way out. I didn't think it was that big of a deal but one of the women running the pageant would yell up the stage the CORRECT name at me. By the 3rd time she did it I was ready to either walk off the damn stage or yell back.
Number one- it was my first time in like 5 years doing something even REMOTELY like that... Two- it's an honest mistake even for someone NOT on chemo. But I also forgot to mention another pageant winner that was present and I forgot to make an announcement they'd asked me to do. I realized that as I was walking to my car.
I don't expect anyone to know my story and I'm not going to explain it to everybody but I was nervous enough being fat and up in front of people, but being fat AND stupid was a little much. Keep it together, keep it together. Suck it up Rachel. I fought back tears on the way home- telling myself I was being too sensitive.
Funny thing though- I was so nervous in front of the Judges and organizers of the fair I didn't really get a good vibe talking to them. It was probably just me. But I needed some hand sanitizer and no one there had any so I walked to the National Guard tent to see if they had any and I had ZERO problem talking to the guys there. Not flirting thank you- I'm just more comfortable around guys. I don't feel like they're sizing me up. I'm just there and can converse.
I Digress....
I had a CT scan yesterday (okay, not so normal) it was supposed to be Wednesday but I had it in my head that it was Thursday. I was cringing at the fact that I would have to do the contrast again... barf-o-rama. They worked me in. Not like the CT room is jam-packed in little ol' Marietta, Ohio. I can't say I'm a fan of the taste od saline and the IV contrast. Would be more tolerable if I didn't get it so often.
Oh, I wanted to give a little more detail about the "Not doing chemo." I defintely want to clarify that I'm not giving up by any means. 15 rounds of chemo and 2 chemo surgeries- that's what I've had in less than a year. And all signs point to "Only the surgeries have done any good" and those haven't done much at that. It is DISCOURAGING to endure the sweats, nausea, fatigue, mood swings, feelings of inadequacy, mental strain and so on that goes with chemo only to be told it's doing no good.
I'm not 100% positive it's NOT doing any good, but I don't know that if I could put the energy I WOULD have if I wasn't on the chemo toward eating healthier and being active if that would do just as good. BUT then I think "Well, what would my situation be if I hadn't done any chemo at all?" The CT scans from this week will tell whether this particular chemo has had any effect. There is a ton of research suggesting that IV chemo has little to NO effect on this type of cancer. It's not like other cancers where it's IN an organ or IN the blood or IN the lymph nodes. It's floating around the juices in my abdomen, landing on the outside of the organs. So it's suggested that the amount of chemo it would take to actually have a real effect on THOSE cancer cells would be toxic to the person.
You second guess every decision you make. Will THIS kill me? Will THIS save me? Do I care at this very moment? Yeah, I think that too.
Seeds of doubt. That's all it takes to wreck me. Should I have been a vegetarian my entire life? Would I still be where I am? My cancer is from a genetic mutation... so is it my fault? How the hell was I supposed to know? It's hard enough to know you have cancer and that it may kill you, but then almost every book you pick up tells you how "Colon cancer is the easiest cancer to prevent." Yeah- My ASS. Pun intended. So I did this to myself, huh? They NEVER mention Lynch Syndrome and it's factor to the equasion. It's all YOUR fault and WE'RE gonna rub it in. HA HA!
And on another note... I'm not a fan of the "Medical community conspiracy" to squeeze money out of you instead of using that "Cure to Cancer" they've got hidden away and won't use because cancer is a big money maker. Sorry to anyone who believes this- but it just PISSES ME OFF to hear. So please don't bring it up to me. I know it's a possibility.. however remote.. but I don't want to hear it. I'm not keeping myself in the dark, IF there is a secret cure for cancer- how the hell am I supposed to get it? So on my deathbed I'm supposed to be mad at the entire medical community or the insurance company or the government? I'm not going to walk around- pissed off at the world because there is a THEORY that cancer drugs are SO lucrative that "they" (whoever THEY might be)are keeping the cure from the general population. I put that in the same category as "The Moon landing was filmed in a basment in Hollywood." It's possible... but where is the proof either way? And I could almost promise you that no cancer patient wants to hear that shit.
I have to go with what is available to me.
What and Who is right? Who knows? If I die, does that mean I picked the wrong path to follow? So if I go Vegan and exercise like a fiend and still die, what does that mean?
What's the right answer?
Monday, July 12, 2010
No chemo today.
Because I am a wimp. I so had my heart set on the idea of not doing any more chemo. BUUUUT since my leave date for Italy is September 18, I could actually squeeze in a couple more rounds with Avastin. Surgery will most likely be in October because I'm NOT having surgery before I go to Italy. I want to ENJOY it.
I talked to Dr Cawley today... okay, whined to her. Cried because I didn't want to do any more chemo, because I'm tired and sick and sick and tired of it. I want to be a present mom, not one that just sits and watches movies.
SO, I have a CT scan scheduled for Thursday, then meeting with Dr Cawley again on Friday and will have Scan Discs and paperwork to take with me to Dr Chalikonda. I have watched one of his webinars on HIPEC.
Click it if you wanna watch.. it's about 12 minutes long.
So more decision making next week.
In the meantime, trying to shake the chemo taste in my mouth, making plans for what I will be doing if I don't have any more chemo. I hope, I hope, I hope.
Oh and Publisher's Clearing House says I could be a winner and get $5000 a week for the rest of my life. You think I'm playing along... Hell yeah! My luck will turn SOMETIME!!
Pick Me Clearing House
Five Thousand Dollars Sounds Good
Knock On My Door Please
A little something for Dan... No chemo tonight in my coffee....
I talked to Dr Cawley today... okay, whined to her. Cried because I didn't want to do any more chemo, because I'm tired and sick and sick and tired of it. I want to be a present mom, not one that just sits and watches movies.
SO, I have a CT scan scheduled for Thursday, then meeting with Dr Cawley again on Friday and will have Scan Discs and paperwork to take with me to Dr Chalikonda. I have watched one of his webinars on HIPEC.
Click it if you wanna watch.. it's about 12 minutes long.
So more decision making next week.
In the meantime, trying to shake the chemo taste in my mouth, making plans for what I will be doing if I don't have any more chemo. I hope, I hope, I hope.
Oh and Publisher's Clearing House says I could be a winner and get $5000 a week for the rest of my life. You think I'm playing along... Hell yeah! My luck will turn SOMETIME!!
Pick Me Clearing House
Five Thousand Dollars Sounds Good
Knock On My Door Please
A little something for Dan... No chemo tonight in my coffee....
Friday, July 9, 2010
Looking ahead.
The next couple of months are quickly getting jam-packed. That's perfectly fine with me. I will be taking a little jaunt to Missouri for a weekend at the end of this month, will be heading to New York sometime in August and then Italy the first of September.
Will probably schedule surgery for late September. I wouldn't be able to do Italy anytime soon after surgery anyway. My uncle John was heading that direction and invited me along. My big WANT TO see is Rome and the Colosseum and Pantheon. Then The Leaning Tower of Pisa. I'd love to see Venice, but it's a little out of the way.
I'm excited to go. Feel a little guilty that I want to do a lot of stuff solo. It's kind of a zen thing I guess. I just might sit outside a restaurant and people watch for a couple of hours. Do a lot of reflecting in one of the most beautiful cities in the world. (I imagine it is- will let you know :) I don't want to reflect too much. I'm not cracked up about spending the day crying or anything.
Besides- when I get back it will be enough of a wake up call to get the MOAS. Wherever I decide to have it. I can only imagine how bad it will put me on my ass (no pun intended). The last 2 surgeries were only 4 hours and they didn't remove anything but 'samples'. So I'd imagine that if they have to strip my peritoneal lining (something mentioned by Dr. Goodman) that will suck. eh. The whole thing will suck. But a necessary suckage. If my 'expectancy' goes from less than a year to even just 2 more years, it will be worth it. ANY extra time I can spend with the girls is worth it. And the fact that I will have seen New York and Italy will make it even sweeter. I won't be feeling some crazy itch to NEED to go anywhere.
Will probably schedule surgery for late September. I wouldn't be able to do Italy anytime soon after surgery anyway. My uncle John was heading that direction and invited me along. My big WANT TO see is Rome and the Colosseum and Pantheon. Then The Leaning Tower of Pisa. I'd love to see Venice, but it's a little out of the way.
I'm excited to go. Feel a little guilty that I want to do a lot of stuff solo. It's kind of a zen thing I guess. I just might sit outside a restaurant and people watch for a couple of hours. Do a lot of reflecting in one of the most beautiful cities in the world. (I imagine it is- will let you know :) I don't want to reflect too much. I'm not cracked up about spending the day crying or anything.
Besides- when I get back it will be enough of a wake up call to get the MOAS. Wherever I decide to have it. I can only imagine how bad it will put me on my ass (no pun intended). The last 2 surgeries were only 4 hours and they didn't remove anything but 'samples'. So I'd imagine that if they have to strip my peritoneal lining (something mentioned by Dr. Goodman) that will suck. eh. The whole thing will suck. But a necessary suckage. If my 'expectancy' goes from less than a year to even just 2 more years, it will be worth it. ANY extra time I can spend with the girls is worth it. And the fact that I will have seen New York and Italy will make it even sweeter. I won't be feeling some crazy itch to NEED to go anywhere.
Wednesday, July 7, 2010
And... Doubt kicks in. Son of a~
Am I over thinking? Or is this normal? Or both?
I just scheduled an appointment with Dr. Chalikonda at Cleveland Clinic. They have just recently started doing the HIPEC surgery there. Am I looking there because it's the #4 hospital in the country or because it's 3 hours away? I've heard good things about it's cancer research branch. I want another Doctor to look at my records. I'm wondering why the MOAS wasn't suggested by my other surgeon. I want to get more than one doctor that thinks I'd be a good candidate. So why not? Right? Maybe? Shit. I don't know.
I have a good feeling about Doc Goodman- don't get me wrong, but how do you KNOW which doctor to go with? What If I get a good feeling from this other doctor too? What do I base my decision on? This is my LIFE we're talking about- so geographical location shouldn't matter. But does it have a bearing on my decision subconciously? WTF? How can I be so stoked one day and then on the fence the next? One thing is for sure: I'm not doing any more chemo. I just can't. I truly believe I need the MOAS and I need to be in the best condition I can be in before GO day and I simply can't do that when I'm sick and tired all the time from chemo. I'd rather swallow glass.
What the hell am I doing? Sabotaging myself?
The earliest I could get in to see the new guy is July 20. Gotta get records to him in the meantime. It was harder to get where I needed to get with what I was wanting talking to Cleveland Clinic. Is that bad? In the big scheme of things does it matter? How the hell do you pick the right doctor to do a huge surgery?
To rest my mind... a Haiku:
Too much to process
Maybe I'll pick some flowers
Cancer sucks on toast
I just scheduled an appointment with Dr. Chalikonda at Cleveland Clinic. They have just recently started doing the HIPEC surgery there. Am I looking there because it's the #4 hospital in the country or because it's 3 hours away? I've heard good things about it's cancer research branch. I want another Doctor to look at my records. I'm wondering why the MOAS wasn't suggested by my other surgeon. I want to get more than one doctor that thinks I'd be a good candidate. So why not? Right? Maybe? Shit. I don't know.
I have a good feeling about Doc Goodman- don't get me wrong, but how do you KNOW which doctor to go with? What If I get a good feeling from this other doctor too? What do I base my decision on? This is my LIFE we're talking about- so geographical location shouldn't matter. But does it have a bearing on my decision subconciously? WTF? How can I be so stoked one day and then on the fence the next? One thing is for sure: I'm not doing any more chemo. I just can't. I truly believe I need the MOAS and I need to be in the best condition I can be in before GO day and I simply can't do that when I'm sick and tired all the time from chemo. I'd rather swallow glass.
What the hell am I doing? Sabotaging myself?
The earliest I could get in to see the new guy is July 20. Gotta get records to him in the meantime. It was harder to get where I needed to get with what I was wanting talking to Cleveland Clinic. Is that bad? In the big scheme of things does it matter? How the hell do you pick the right doctor to do a huge surgery?
To rest my mind... a Haiku:
Too much to process
Maybe I'll pick some flowers
Cancer sucks on toast
Tuesday, July 6, 2010
2 in one day! Inconceiveable!
I feel a little like Roscoe P. Coletrain... Good News, Good News!
All geeked up.
My "Danger Zone" ringer went off this afternoon.
Dr. Goodman called me. He said he thinks I am a great candidate for the MOAS and said that when I am ready to schedule- to call the office. I told him that I have been doing the FOLFIRI chemo with Avastin, so it would be at least 8 weeks from last monday before I could have the surgery. He suggested I stop the IV chemo all together to be totally 'healthy' for the surgery. Of course healthy, aside from the cancer and all.
SO- Hooray for no chemo for now. Hooray for a fighting chance. The first I could have the surgery is August 23. I'm mulling over the dates for now.
THAT's my good news. I wanted to jump through the phone and hug him.
All geeked up.
My "Danger Zone" ringer went off this afternoon.
Dr. Goodman called me. He said he thinks I am a great candidate for the MOAS and said that when I am ready to schedule- to call the office. I told him that I have been doing the FOLFIRI chemo with Avastin, so it would be at least 8 weeks from last monday before I could have the surgery. He suggested I stop the IV chemo all together to be totally 'healthy' for the surgery. Of course healthy, aside from the cancer and all.
SO- Hooray for no chemo for now. Hooray for a fighting chance. The first I could have the surgery is August 23. I'm mulling over the dates for now.
THAT's my good news. I wanted to jump through the phone and hug him.
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