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PCI - One day at a time. (Day 6)


SDianneB

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Wow. Halfway through today. YAY!! It is COLD outside too -- 24 degrees. Brrrrrrrrr! Somehow, the cold air feels invigorating to me -- under the sunshine, a brisk day. Yummy. Last night I put on the electric blanket for the first time this season. The kitties were thrilled! I forget how they stick with me so much in the winter and are so stuck up in the spring/summer! They just love me because I know how to work the electrical stuff. :( (pout)

So, with the bleepin' mask out of the way as a major concern, I went looking for a new one, and it occurred to me that I'M ALIVE! By golly, I'M ALIVE! Had you asked me last June, I would have told you I wasn't sure I'd see another Christmas, and here it is just around the corner.

It isn't always this way in my life, but I think my decision when I was diagnosed to fight this tooth & nail was a good one. Back then, I knew zilch about this disease, but I knew that when the Pulmonologist (bless him) told me I had good chances for a cure, I was in like Flint. And once I learned about PCI, it seemed like a no-brainer (no pun intended!) and fitting with my decision to go after this in a big way.

This morning, I counted -- counted to 10 while each side of my head got zapped. That's how long -- or how short -- it lasts, and I figure I spend about 1 or 1 1/2 minutes in that mask. Yes, there are potential drawbacks to having this, but it seems a small price to pay for a measure of quality of life for as long as I can have it.

When the treatment was done and I was waiting for the tech to come in and release me from my cranial bondage, I heard tinkling bells -- Jingle Bells. Yikes! Was this (gulp) like the lights that I see that aren't really there? No, they were real sounds -- every time a baby is born there, they play a little tune over the loud speaker. This time of year, it's a holiday tune. Ha ha. Joke's on me! :roll: (They should be ashamed -- messing with someone's mind who has her head in the toaster every day!)

I had a touch of nausea last night, but wasn't sure if it was from the radiation or just in general. Probably the radiation, because I've never been prone to nausea. It was nothing to write home about though. I just had a few popsicles, cuddled up with the kitties, and all was fine. It isn't there this morning, although I did bring my magic pills with me just in case.

So, that's the report from halfway through. Strange how fascinating this becomes to me when I sort of step out of myself and look at it objectively. Here is this massive machine with these smart people running it, and it is so very precise that it goes exactly where it's needed inside my head. Awesome.

Di

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Oh, and just one more thing.

This deal about "bravery?" It just ain't so. It's determination. Bravery is when a young man or woman puts on a uniform and goes to Iraq or Afghanistan or wherever s/he is sent and does his/her job and does it well, and does it for all of us. Bravery and being a "hero" means, to me, putting your own life on the line in an immediate and direct way in order to preserve the life of another.

What I'm doing here is based on determination -- the will to live as long as I can, and to make the most of it. It doesn't require bravery to do that -- just being stubborn as all get out, and I qualify highly on that point! :P

Di

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What I'm doing here is based on determination -- the will to live as long as I can, and to make the most of it. It doesn't require bravery to do that -- just being stubborn as all get out, and I qualify highly on that point!

Yes. I agree. Same for me, I think.

Something to keep in mind, Di....is that I'm starting to understand what Lance Armstrong referred to when he said that nobody teaches us how to BE survivors. In other words....once treatment is over...once we are not doing ANYTHING active (ie: chemo or rad) to stop the cancer.....THEN how do we proceed? This state of being produces a new anxiety, in that we aren't doing anything to keep the cancer at bay....you know?

I keep trying to tell myself that I've DONE everything that can be done at this point and must BELIEVE it will be sufficient! And I'm not yet really stewing about my upcoming CT scan in January. But the holidays are sort of keeping my head busy too....so I wonder, once Christmas is over...if I'm going to start getting a bit more anxious? Dunno yet. We'll see, I guess.

The whole process of treatment - especially radiation and how precise they are (and have to be! :shock: ) - is amazing! And you know....the other day a friend said something to me about "all I've been through" and my attitude being "so amazing" to her. Well...the truth of the matter is, that this woman's hubby had a massive stroke last month. He's in rehab now...and has a ways to go, but I think HIS attitude is what is TRULY amazing!

His body has betrayed him. His left side is partially paralyzed. Yet every day he works at rehab, to get better....get stronger. Mentally, it must be SO hard for him knowing what he wants to do....but having to accept that his body cannot yet do it.

For me, I went thru treatment and at no time has it felt like my body has betrayed me. Much of my life has remained unchanged....where in my friend's hubby's case....he's got to remain in bed unless someone can help him to move around.

If I want a cookie....I can walk to my kitchen and get one! He cannot.

THAT, to me.....is a truly amazing spirit and attitude. That someone can suffer a paralyzing stroke and fight their way back with a good attitude! Much harder than anything I've gone thru so far!

Perspective....huh? Sometimes it really centers you about just how good/bad off you are....eh? :wink:

Glad you're halfway done, Di. Hmmm.....would we have to call that being lightly toasted? Guess that sounds better than half baked, huh? :D

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Glad you're halfway done, Di. Hmmm.....would we have to call that being lightly toasted? Guess that sounds better than half baked, huh? :D

Haha -- you're too funny! :P

I couldn't agree with you more. My inspiration is my mother. Age 91 and still going strong. Her mother lived into her last 90s, and she had an aunt who lived to be almost 101! There are times when she gets down in the dumps, and wonders why she "has to" live so long. Well, I tell her it's because of those strong genes passed down to her. And because I want her to!

Realize too that this woman worked a full time job until just 2 years ago, and would probably still be working today had her boss not broken a hip and had to slow down. (The boss was older than my mother even!) :o

Her mother, my grandmother, taught school for almost 20 years, then retired, married, and raised 6 children -- my mother is the eldest, and is one of 3 still living. The oldest, youngest, and the one in the middle are still living! She was born in 1913. Think of what she has lived through? As a little girl, she remembers men in her little town going off to WWI and coming home, she remembers the excitement over women getting to vote the first time, the depression, and on and on. What an amazing time to be living. How very had they worked to survive and make things better for us. And yes, I'm ever grateful that neither one of us is bedridden or dependent on someone else for basic necessities.

I also think you're right on the inactivity we will face, at least in terms of actively being treated. Seems as though we work feverishly and aggressively just to achieve statis! Something tells me that this forum and our support systems will become more important as time goes by. At least until we figure out some way to deal with the periodic scans and checkups in some rational manner.

It's a lot to deal with mentally, for sure.

Di

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....nothin' brave about me...... i'm just doin' what i can to save my own neck.... besides.... we dont have a lot of choices the way i see it.... "skeered" not to take the treatments (or whatever).....

i've been sicker than crap....but never thought i was in immediate danger of death (wished i was dead a couple of times hehehhe)....

not tryin' to bring you down but be prepared to feel like crap....youre 'sposed too "after" you get done w/these (2 weeks) ....hope not..... but dont let it surprise you.... for most folks i dont think its that bad.... you know all of that....

...youre about 1000% tougher than me... you make it to work .....i'm not doing that.... couldnt....

i think the thing w/pci (for me) is if the stuff comes back i cant beat myself up w/ "oh i wish i had done it"..... ...s

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Di

Congrats on the half-way mark. I also did the counting while they were zapping me. I got anywhere from 10 to 18 seconds, depending on what kind of music they were playing in the room - the beat messed up my counting.

I have also been wondering what to do now that treatment has ended. I have decided that I want to just get 2004 out of the way and begin 2005 with a bang. There have been things I have wanted to do (a cruise, spend more time with family and friends, etc.) but just haven't taken the time and figured I would get to it someday. Well, this is twice now that cancer has hit me - I think maybe it's time to get busy with the stuff that I want to do, not just the stuff that I should do.

My parents are in there 80's and healthier than I am. I figure I have really good genes and if I can just get through all this cancer stuff I will live a long and happy life.

My radiation burns on my forehead and ears worsened after the treatment was finished but I didn't feel bad - I didn't even get hit with the fatigue they talked about. Everybody seems to react differently. I will be posting in the Test Time forum, but I will be having a brain MRI this Thursday. I am still experiencing eye focus and balance problems. I had quite a time with brain swelling throughout the treatment and they just want to make sure that is what is causing it instead of....well, you know.

Will be interested to see what kind of a scan schedule they put you on after treatment ends. Have they talked about that yet? Well, take care and only 6 more to go....YEA!

Love and hugs,

Nancy B

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Nancy B -- I'm not exactly sure of a schedule for next year, but the Pulmonologist indicates that I'll start with a CT scan in January, and will be "followed up" every 3 months. I'll have some kind of schedule with the Oncologist too, I suppose, so will find out in January. I'll go back to my PCP in February, and see the Rad. Onc. about a month after the PCI, so I'll have a LOT of appointments to keep me busy after the first of the year!

Schmaydee -- don't be a tough guy if you don't feel like it! From day 1 with this, I've done what I feel like doing. For a month or so, I left work about an hour early so I could rest, then started back with full days a few weeks after chest radiation ended. There have been a few times when I just felt icky or tired, and have gone home early. I just do what I feel like, and no more. I've also learned not to let people push me like I used to. I probably lost a "friend" over it, but she seemed to like my minivan to go shopping in, and when I wouldn't (couldn't) just take off and go to Costco when she wanted to, she took a hike. I'll miss her like a wart on the end of my nose. :P

I have an aunt who lives in California -- in her 80s. About 35 years ago, she had lung cancer (not sure what type) and had about half of a lung removed, and is still going strong. About 20 years after her cancer, her mother got the same kind, had about the same surgery, and lived another 20 years (neither smoked). I tell her I want to be in her footsteps!

Di

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Hi Di:

Enjoyed your message. You and Addie write so well. makes for interesting

reading. I am so sleepy and fatigued and making many mistakes with

writing and it is slow go.

My head didn't hurt much today. My hands are not steady but I am like

schmaydee, giving it a good try. I am not ready to give up. I never

checked out what happens when this is over. My focus was just trying to

get through this PCI step.

I will write more when I feel better. I am so eager to read what you write

that i feel i should say something.

It is really cold here and I have to wear a mask and oxygen to try to

make breathing easier. Your mother is some kind of lady. You must come from very good stock.

Take care and thanks for your writing.

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bacalice -- there is no need for you to write a whole lot if you don't feel like it. Feel free to just read! Of course, we all love for you to write, if even to say hello -- just so we know you're ok.

Glad your headache is better. And I like it best that you say you aren't going to give up.

Take care of your sweet self.

Di

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