Well, it's the last week before my last treatment. And a whole new angst has set in. In the midst of IV chemo treatments, it's easy to just think of (and dread) the upcoming # of rounds. Now, I wonder if all this has been effective or is a CT scan just gonna show that it did nothing. Hoping that scans are clear and that since my skin, teeth, gums, sanity, nerves, tastebuds, digestive system, mothering skills, wife skills, temper and emotions all suffered over the last 7 months- that those stupid cancer cells suffered more. DIE! DIE! DIE! Cancer Cells!!!!!!!!
I am not looking forward to the IPHP surgery but it's gotta be done, and I'll be on the other side of it soon enough. It's usually just a cloud when I'm in hospital. I'll be happy to have a room to myself if I can get one (gonna see what I can swing- since the nursing staff seemed to like me alright) and I'm hoping to have a laptop so I won't be TOTALLY bored in the middle of the night and I can blog away. Should be interesting- drugged up thoughts.
In the meantime, as a Public Service, I thought I'd mention a little tip for others with chemo side effects. I've found that drinking out of glass or plastic is MUCH better than any kind of metal. I had bought a metal water bottle with the intentions of drinking lotsa water... to me, it's simply foul out of that. And what sucks even more is that I don't know that I'll even use the bottle again even after side effects fade- it's more mental now. Guess I'll give it away or something.
Just recently- my gums have been sore/sensitive... and I know it's from the chemo, I just thought I'd escape THAT particular side effect. No such luck. It HURTS to brush my teeth, so I got an extra soft toothbrush. And to add to that- minty toothpaste kinda burns with the cold sensitivity- so I got smart and just started using my 3 year old's Dora Bubblegum flavored toothpaste. Voila! Better! Just a couple of 'solutions' if you will, for my problems. Maybe they'll work for you. Hopefully you don't even have to deal with stuff like that.
Monday, January 25, 2010
Thursday, January 21, 2010
SO Close!
As I approach the final round of chemo, it would be an understatement to say it will be a relief to be done with it. I was actually proud of myself for the past couple of days for not getting all weepy and emotional- focusing on the home searching/buying process... looking forward. Though that, in itself, can be depressing too. I look at the house and wonder if I'll be there to send my girls down the steps to the front door in their prom dresses... in their caps and gowns... or to help them pack up a car for college.
I try, for now, to focus on the now. But honestly- NOW- is hard too. I wonder if that will ever go away. Will I ever NOT wonder what I won't be here for? Once you hear "You've got Stage 4 Cancer and it's not cureable." You wither a bit. Oh yeah, you can be strong.... for stretches but it's virtually impossible to be Richard Simmons level of optimistic. :) (though I love him!)
I think what breaks me down the most isn't the idea of dying... I mean, everybody's THOUGHT about it at one point I'm sure, but it's a different twist when it's more of a reality. You want to get your affairs in order and make sure those you trust will follow through with your wishes. It's that I won't be around for all that I should be. I guess it's like not wanting to go to bed at night when you're a kid- you're SO afraid you're gonna miss something great!
Normally I'm a procrastinator- but I don't know that I have the luxury of time anymore. All research suggests that what I've got has an 18%-28% survival rate at 5 years after diagnosis... and I'm almost 1 year down already. Gotta be real. Not that I plan on just signing out at the 5 year mark, but let's be honest with ourselves.... anything past that mark is a gift. Tick-Tock.
So to put a spin on this less than sunny post- I sit here with the best of nausea, fatigue, stomach cramps, numb/sensitive fingers and allergy/watery eyes, but I know there is a good reason I'm putting up with these side effects. Eyes on the prize- and that prize is being able to be with my family and friends for as long as possible.
Plus, your lives would be so boring without me. I gotta keep you entertained. :)
I try, for now, to focus on the now. But honestly- NOW- is hard too. I wonder if that will ever go away. Will I ever NOT wonder what I won't be here for? Once you hear "You've got Stage 4 Cancer and it's not cureable." You wither a bit. Oh yeah, you can be strong.... for stretches but it's virtually impossible to be Richard Simmons level of optimistic. :) (though I love him!)
I think what breaks me down the most isn't the idea of dying... I mean, everybody's THOUGHT about it at one point I'm sure, but it's a different twist when it's more of a reality. You want to get your affairs in order and make sure those you trust will follow through with your wishes. It's that I won't be around for all that I should be. I guess it's like not wanting to go to bed at night when you're a kid- you're SO afraid you're gonna miss something great!
Normally I'm a procrastinator- but I don't know that I have the luxury of time anymore. All research suggests that what I've got has an 18%-28% survival rate at 5 years after diagnosis... and I'm almost 1 year down already. Gotta be real. Not that I plan on just signing out at the 5 year mark, but let's be honest with ourselves.... anything past that mark is a gift. Tick-Tock.
So to put a spin on this less than sunny post- I sit here with the best of nausea, fatigue, stomach cramps, numb/sensitive fingers and allergy/watery eyes, but I know there is a good reason I'm putting up with these side effects. Eyes on the prize- and that prize is being able to be with my family and friends for as long as possible.
Plus, your lives would be so boring without me. I gotta keep you entertained. :)
Tuesday, January 19, 2010
Round 11.
No problems yeserday. Feeling tired and nauseous and the cold sensitivity is back- full blast. Oh well- one to go. One to go.
Feeling okay mentally. I hope it holds this time. I hate being weepy. blah.
Jason actually went with me yesterday. It was the first time he'd even seent he inside of the Strecker Center. I'm sure he was bored- there's not much to do but watch your loved one get pumped full of drugs. He brought plenty of books.
After all this is said and done, I get another CT scan (and will get one every 3 months for 2 yrs then every 6 months after that for the rest of my life.) and surgery and surgery and surgery. Could be worse I guess. I could just simply NOT be here to get the surgeries right?
Silver lining... siiiiilver lining.
Feeling okay mentally. I hope it holds this time. I hate being weepy. blah.
Jason actually went with me yesterday. It was the first time he'd even seent he inside of the Strecker Center. I'm sure he was bored- there's not much to do but watch your loved one get pumped full of drugs. He brought plenty of books.
After all this is said and done, I get another CT scan (and will get one every 3 months for 2 yrs then every 6 months after that for the rest of my life.) and surgery and surgery and surgery. Could be worse I guess. I could just simply NOT be here to get the surgeries right?
Silver lining... siiiiilver lining.
Friday, January 15, 2010
WTF?!?!
You know, my medical situation is so 'effed up that even labs can't figure it out. There's signs that I have Lynch Syndrome which predisposes you to all kinds of fabulous cancers. (it only leaves out a couple) But the lab where they sent my blood sample couldn't get ANYTHING from my tests. INCONCLUSIVE. The dude from the lab called the Strecker (where I get my chemo and such) almost in tears because he's "Never seen anything like this before." (I've mentioned this in a WAY earlier post) Dr. Arnold said it may not be heriditary because there were no polyps anywhere else in my colon (TMI?) and if it IS heriditary- he's gonna just remove my entire colon. Guess that's probably just around the corner. Along with a total hysterectomy. not like I'm gonna use THOSE parts again.
Then there's the matter of what type of cancer this actually IS. I was told colon cancer in the beginning, then appendiceal cancer, then they're just calling it mucinious adenocarcinoma of the colon. All are on my paperwork at different points- because they can't figure me out.
I never really did ANY research on Lynch Syndrome when they said something about a DNA mutation. It never occured to me to do so. But as of lately, I've been researching a bit. And it's not good. It makes me cry to think I've probably passed this onto my girls and it pisses me off to think I'm gonna be battling this shit until one of us wins. What a mess.
I never really did ANY research on Lynch Syndrome when they said something about a DNA mutation. It never occured to me to do so. But as of lately, I've been researching a bit. And it's not good. It makes me cry to think I've probably passed this onto my girls and it pisses me off to think I'm gonna be battling this shit until one of us wins. What a mess.
Monday, January 11, 2010
Thinking Of Others
I am so glad I found this Blogosphere- It's allowed me to connect with others diagnosed with rare cancers... specifically appendix cancer. While I live in the Chemical Valley, I haven't been able to connect with someone in a relative situation to mine 'in person'.
But HERE- I've found (or others have found me) others in different stages, different treatment stages, of similar cancers and we are learning tools for each other. I found HOPE in a blog from someone with exactly the type and stage cancer I have, (http://appendix-cancer.blogspot.com/) after looking at the 'numbers' and seeing that making it 5 years past my diagnosis date would be next to a miracle- her blog and informative page made me think 'I can BEAT this and be another success story'.
I've also connected with others diagnosed mere months after me. Cheryl (http://appendix-cancer-sucks.blogspot.com/) found me only a few weeks after I started this blog- and recently Sheboygan Dan (http://www.oncoloblogy.com/) found me. Though I don't know ALL the specifics of others' situations, we exchange positive thoughts and sympathetic 'ears' when feeling like, well, poop.
I was thinking of Dan in particular today- he had the IPHP/HIPEC/Shake and Bake surgery on Friday and I'm keeping up with his updates. His family has been nice enough to update when he can't... he's busy healing!! I totally feel for him because I've been there (ugh and will be again) with the surgery at least. I was glad to be able to at least give him a little insight into what it would be like. Not knowing what to expect is probably one of the worst feelings to have- and to have that worry on top of the worries you already have when you've got cancer just sucks on toast. I'm hoping he has a speedy recovery and can update his blog soon. I thoroughly enjoy reading his posts!
Of course this is not meant to diminish anyone who has posted words of inspirtation or understanding- or anyone who simply reads this blog.
I was talking to my mother in law the other day- when I was feeling so low (Tunnel's End post) she suggested I find a support group for cancer patients/survivors. Though I'm SURE it's good for others- I just can't see myself doing well with a sit-down support group. I think I'd be a blubbery mess. And I DON'T like being like that. I mean, it's good to sit and vent but it would be me, me, me... waahhhh. I'm just not crazy about the idea. This blog is my support group. I get what I need to get off my chest and I don't actually MAKE anyone read this so no one is subjected to my rantings... they (you) read because you WANT to. And that fact does wonders for the self-esteem. So I thank you!
But HERE- I've found (or others have found me) others in different stages, different treatment stages, of similar cancers and we are learning tools for each other. I found HOPE in a blog from someone with exactly the type and stage cancer I have, (http://appendix-cancer.blogspot.com/) after looking at the 'numbers' and seeing that making it 5 years past my diagnosis date would be next to a miracle- her blog and informative page made me think 'I can BEAT this and be another success story'.
I've also connected with others diagnosed mere months after me. Cheryl (http://appendix-cancer-sucks.blogspot.com/) found me only a few weeks after I started this blog- and recently Sheboygan Dan (http://www.oncoloblogy.com/) found me. Though I don't know ALL the specifics of others' situations, we exchange positive thoughts and sympathetic 'ears' when feeling like, well, poop.
I was thinking of Dan in particular today- he had the IPHP/HIPEC/Shake and Bake surgery on Friday and I'm keeping up with his updates. His family has been nice enough to update when he can't... he's busy healing!! I totally feel for him because I've been there (ugh and will be again) with the surgery at least. I was glad to be able to at least give him a little insight into what it would be like. Not knowing what to expect is probably one of the worst feelings to have- and to have that worry on top of the worries you already have when you've got cancer just sucks on toast. I'm hoping he has a speedy recovery and can update his blog soon. I thoroughly enjoy reading his posts!
Of course this is not meant to diminish anyone who has posted words of inspirtation or understanding- or anyone who simply reads this blog.
I was talking to my mother in law the other day- when I was feeling so low (Tunnel's End post) she suggested I find a support group for cancer patients/survivors. Though I'm SURE it's good for others- I just can't see myself doing well with a sit-down support group. I think I'd be a blubbery mess. And I DON'T like being like that. I mean, it's good to sit and vent but it would be me, me, me... waahhhh. I'm just not crazy about the idea. This blog is my support group. I get what I need to get off my chest and I don't actually MAKE anyone read this so no one is subjected to my rantings... they (you) read because you WANT to. And that fact does wonders for the self-esteem. So I thank you!
Friday, January 8, 2010
A better day....
So, I gave up the funk. What a difference a day makes.
I still feel like hammered dog poo, but the attitude is shifting. Like it always does on day five after chemo. If you notice my whiny posts are almost always between day 2-4 after a treatment. So effed up that drugs can do that. When I was in high school- the word "drugs" kinda meant something fun. Not now. I could be TOTALLY happy if I never had to even take a friggin' tylenol again. I punched out one of my pills today and literally heaved at the idea of taking it. Of course, I wretch at almost anything these days. My mouth tastes SO much like chemo- I think I could chew it. Yum! And not to mention that my breath probably smells like a chemistry lab.
There's simply NOT enough Orbit gum in the world.
Though I can see the next "Dirty Mouth?" commercial featuring - ME! Picture it: Sitting in the chemo chair, getting pumped full of all kinds of chemicals, then munching (you know, I'm throwing up in my mouth a little just typing this) on the "lunch" they bring you... nastyness... then smiling with a green cloud oozing from the corner of my mouth.
Then the perky little lady shows up. Ching! I make a Mint off the royalties. Right.
I still feel like hammered dog poo, but the attitude is shifting. Like it always does on day five after chemo. If you notice my whiny posts are almost always between day 2-4 after a treatment. So effed up that drugs can do that. When I was in high school- the word "drugs" kinda meant something fun. Not now. I could be TOTALLY happy if I never had to even take a friggin' tylenol again. I punched out one of my pills today and literally heaved at the idea of taking it. Of course, I wretch at almost anything these days. My mouth tastes SO much like chemo- I think I could chew it. Yum! And not to mention that my breath probably smells like a chemistry lab.
There's simply NOT enough Orbit gum in the world.
Though I can see the next "Dirty Mouth?" commercial featuring - ME! Picture it: Sitting in the chemo chair, getting pumped full of all kinds of chemicals, then munching (you know, I'm throwing up in my mouth a little just typing this) on the "lunch" they bring you... nastyness... then smiling with a green cloud oozing from the corner of my mouth.
Then the perky little lady shows up. Ching! I make a Mint off the royalties. Right.
Thursday, January 7, 2010
Tunnel's End
Why is it when you're on a trip and have to pee, it gets more urgent the closer you get to home? Like you couldn't POSSIBLY hold it for another second? Well, my friends, I have to pee and I don't know that I can hold it anymore.
Reality: This Chemo is frustrating, painful, exhausting, infuriating and depressing and though I only have 2 more rounds to go, I wonder how much more I can tolerate. Of course I will finish the treatments and deal with it- but I can't help but think part of me is fading away. I can't pinpoint which part- but I am not the same person I was a year ago. I'd like to say I'm a stronger person, but I doubt that's true. I'm sick of being weepy, sad, manic-depressive. And I wouldn't blame anyone around me for avoiding me at all costs. Hell, I hate putting up with myself when I'm like this. It seems like something is chipping away at the person I was. I wouldn't have a problem with it if I didn't like myself before. But I DID! I spent 33 years perfecting my "Rachel-ness" dammit. Don't get me wrong, I'm not perfect by any means- I was just happy with who I was.
I am sincerely hoping that all this is temporary and with time I can be me again. It just can't happen soon enough.
Reality: This Chemo is frustrating, painful, exhausting, infuriating and depressing and though I only have 2 more rounds to go, I wonder how much more I can tolerate. Of course I will finish the treatments and deal with it- but I can't help but think part of me is fading away. I can't pinpoint which part- but I am not the same person I was a year ago. I'd like to say I'm a stronger person, but I doubt that's true. I'm sick of being weepy, sad, manic-depressive. And I wouldn't blame anyone around me for avoiding me at all costs. Hell, I hate putting up with myself when I'm like this. It seems like something is chipping away at the person I was. I wouldn't have a problem with it if I didn't like myself before. But I DID! I spent 33 years perfecting my "Rachel-ness" dammit. Don't get me wrong, I'm not perfect by any means- I was just happy with who I was.
I am sincerely hoping that all this is temporary and with time I can be me again. It just can't happen soon enough.
Tuesday, January 5, 2010
Round 10 of 12
Yesterday went well! Only 2 more rounds to go... hopefully forever, but I won't hold my breath. instead of a 45 minute infusion (I think that's how long it normally was) the oxcilliaplatin infusion was more like 3 hours to avoid another allergic incident. I got a little red on the cheeks and chin and got an anxious feeling, like couldn't stop moving my legs- weird. I got a little "grey" too but it all passed. Rockin' the Fannypack today though. barf.
I was SO happy to have company- Amber came with me for treatment- I thought I'd bring someone along to bear witness in case I went into anaphalyctic shock again. You can't yell when your throat is closed off. LOL. cough,cough.
It was nice to have someone to talk to the whole time. I have text/phone chemo buddies, but face-to face time is great!
Today, I'm feeling the effects of the Oxcilla; Twitchy and feeling stupid. Crossing my fingers that I don't say something stupid on the air.... though that could increase the listening audience. hmmm. Rating, ratings. The cold sensitivity is back with a vengance- suck. I hate wearing gloves inside.
I also didn't feel like messing with 
washing my hair and getting the bandage on my chest wet so I am wearing a knit cap- one that was made by a volunteer and donated to the Strecker Center's Christmas tree of knit cap presents. Normally- I wouldn't take one, but there were so many and it was 3 days to Christmas. The lime green one jumped out at me. See my lazyness? Oh- and notice how watery and red my eyes are? No, that's not "Dreamy-eyed" That's allergies.... allergies I NEVER had before. ugh. 2 more rounds, 2 more rounds.
washing my hair and getting the bandage on my chest wet so I am wearing a knit cap- one that was made by a volunteer and donated to the Strecker Center's Christmas tree of knit cap presents. Normally- I wouldn't take one, but there were so many and it was 3 days to Christmas. The lime green one jumped out at me. See my lazyness? Oh- and notice how watery and red my eyes are? No, that's not "Dreamy-eyed" That's allergies.... allergies I NEVER had before. ugh. 2 more rounds, 2 more rounds. After the chemo is over, I will be scheduling my second IPHP / HIPEC /Shake and Bake surgery... whatever it's called depending on who you talk to. With THAT we will know if the last 6 months of chemo actually did any good. I hope, I hope. At least that's what my necklace says.
More later folks! Take it easy!
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