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I spoke with the chemo doctor

Christy76's picture
Christy76
Posts: 27
Joined: Feb 2019

I spoke with the chemo doctor yesterday and they came up with a treatment plan. I still have to meet the sugreon today and the radiologist next week but the plan is pretty much set up. Either the last week of February or the first week of March I will start a low dose chemo treatment in pill form. They say the purpose of this is to increase the effects of the radiation I will also be getting at the same time. I'm told to be prepaired to be tired a lot. This will go on for five weeks. After that everything will stop for up to ten weeks as my body recovers from the chemo and radiation cocktail. After that it's the surgery followed by six months of potent chemo where they will put some thingie in my neck and I will recieve treatments at the cancer center but then go home and chemo will continue to drip into my body for forty-eight hours then rinse and repeat. Six months? Six months? Really?

On top of that they gave me some ballpark odds of surviving the next five years 60 to 80%. Good odds but I've never sat down with a doctor and been told there is a very real chance I might die. I'm handling it okay as my spiritual beliefs help me not to fear the possiblity of death. To lighten the mood I sat there and thought of my days playing Dungeons and Dragons. Yeah, I'm old and no we never cast any "real black magic spells" Tongue Out In the table top game you have a set of dice known as percential dice to let you know if you succeed in doing certain things. I laughed to myself as I envisoned rolling them to see my cancer outcome. I deal with most negative things with humor.

I had thought that if things went well I would be back to work in three months or so now I'm told I'll spend most of this year fighting cancer. I suppose I could veiw this as an extended vacation as I sit on the beach sipping on chemo cocktails and taking long naps during the day. Only there will be no beach and the cocktails will be injected into me. Forty-two years old and temporarly retired. Maybe I'll check out Matlock, every retiree from my parents generation seemed to love it. Laughing I wonder if the Dollar Tree still sells those cheap "steaks" I could try my hand at frying them up in a way that makes them taste less like an old boot. I could go to the park and talk to every passer by about "the good old days" which for me were twenty years ago. "Back in my day we didn't have fancy hair dye. We used Kool-Aid! You kids don't know how good you have it with your fancy salons and your Instabooks!" "Stop wearing the Nirvana T-shirts. Just because Target had a sale doesn't make you a fan! How old were you in 1992? Were you even born yet?" Tongue Out Gotta keep a sense of humor.

 

 

 

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

This will get better. 

Even if you are 'handling it well', you are still very much in the shock stage.  

First off, DO NOT listen to the stats.  They are just numbers, and you are not a number. 

Things can change.  If you respond well, then treatments will change. You may not be on chemo for life. 

I am thinking that you may be getting a port, which is placed below the neck, in the high chest area.  If so, it is not as bad as it sounds. Do you remember them mentioning a port?  Its a weird little thing, a little alien bump, but it is a vein saver.

The pills are probably Xeloda.  Folks can help you prepare for those, by telling you about the side effects.  The 48 hour bag, is 5FU. I had that. I was dreading it, but it ended up being not so bad. 

There is so much going on right at the beginning. So much running through your head. Just let it run. Soon, it will all be so second nature. 

And really, you are 42? That is so very young. 

Don't rule out not being able to work. There are many people on the forum who worked through chemo. Some even worked through radiation.   Play it by ear, and see how you, personally, handle it. 

Ask all the questions you want.  You're on the road now, we'll travel it with you.

Tru

Peter_S's picture
Peter_S
Posts: 98
Joined: Oct 2018

Forty Two are you kidding me? I'm so ancient, when they need to know my age they send me out for carbon testing. It's either that or cut off a limb and count the rings. Personally I feel the carbon testing is more accurate and it doesn't interfere with my gait which is off enough. And Dungeons & Dragons, oh you crazy kids I remember Pong. And the most fabulous computer game of all time "Phantasmagoria" circa 1995 and written by a woman no less, Roberta Williams who went on to establish Sierra, one of the great innovators in gaming. Forty Two...sheesh you're a toddler. I'm 60 and yes I know I look 24 and act eleven but still, you kids slay me.

 You can have your beach get away too, just use your noodle, dump out a 10-20 bag of sand, set up a beach chair, park your tush in it and have a spray bottle handy for those soothing ocean breezes and there you go. I didn't have chemo pre or post my surgery so I can't offer you any advice or insight about it or in fact any advice or insight about anything else either. But I can tell you that your humor is wonderful and it will be a great source of comfort to those around you. Laughter, especially at ourselves is healing and it's amazing medicine. You don't need a prescription, it's free and I'm loving the way you serve it up.
 
As for statistics I say toss them out the window they serve no purpose. Because my tumor was what they call high grade and a T2, statistically a re- occurrence during my first year is upwards of 80% and then it keeps dropping every year for five years. During this five year circuit party I get checked scanned and probed every three months, it gives me something to do. You'll sail through this and like you, I tend to think it's not the years of our life that count but rather the life in our years - and yes, I stole that line from someone else.
SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Pong, yes, it was fascinating, wan't it.  I bought the game, tried it on the TV for an hour, said, "is that it," a returned the game to the store the same night.

Christy76's picture
Christy76
Posts: 27
Joined: Feb 2019

Trubit: Thanks for all the advice yes they called the neck thingie a port I'm not sure I'm in shock right now but who knows you may be right. As for working, I can't. Because I'm a blue collar worked who worked in a factory lifting heavy objects and on my feet all day the doctor told me it is ideal that I stay out of work so I'm temporarly retired. As time goes I probaby will ask more and more questions. I hope I don't annoy people here.

Peter: I admire your humor and I hope your cancer doesn't come back and things go well for you. You are from the Boomer generation though which means I'm supposed to blame all the wolrd's problems on you. So it's all your fault, everything including that McDonald's was cleaning the shake machine the other night and I couldn't get one. Tongue Out Why when I'm sixty I'll know better than the Boomers! No one will blame me for anything...except the millennials..ah hell they do that already. I'm confident that my generation has never done anything wrong though because I'm part of that  generation and I know I have never done anything wrong. No bad decissions on my part. I certainly don't regret that time I chose to buy that TV and worry about my rent on the fourteenth or that time I ate the fish that I knew had been sitting on the buffet for eight hours. No regrets, none, nope not me. I'm perfect! Seriously I admire your humor Smile

 

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Christy, there are numerous posts about the side effects of chemo and how to deal with them.  It would probably be worthwhile to search Xeloda/Capecitabine (almost certainly your first course of meds) to read about the side-effects.  Doctors never seem to warn you adequately.  One tip I followed is to start using a heavy cream (I used Eucerin) on your hands and feet.  It kept me free of one of the common side effects.  Don't freak-out about the possibilities, but being educated in advance will help you to deal with what might happen.  And with luck, you will have no problems at all.

One advantage of the pills is that you can decrease your dose when the side effects are bad.  Also, the doctors do not tell you, but the dose can be adjusted to deal with your personal response to the drug.  I ended up on a little more than half a dose, the side effects hit me pretty hard.

As to statistics, I would suggest that you do not dwell on them.  Hopefully I will get the time to compose a post on statistics, but there are so many factors that alter how statistics apply.  The best you can do is to vow to optimize your chances to have the best life possible and to put your energy into that.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

Peter likes to make it sound as if he is old...well I think I take the prize for oldest here (when Danker isn't on...lol) as I will be 72 in a few weeks.  I am of the generation just after WWII ended.  Everyone is spoiled these days...a cell phone on every hip.  As a kid I remember one phone in the house with a party line...never knew who was listening in.  Black and white TV with one 30 second commercial every 15 minutes....I counted one of my favorite shows the other day and there were 9 to 11 commercials for 5 minutes after every 10 minutes of show...what a waste!  One bathroom per house no matter how many bedrooms...I have now 3 bedrooms and 3 1/2 bathrooms.  Never mind the invention of the internet...the computer first invented took up huge rooms and couldn't do what an IPad can today.

Statistics never made any sense to me...especially when I took it in college.  You have to remember that there have to be positive outcomes as well as negative ones in order to calculate the statistic.  You have the possibility of ending up in the positive column.  Go with that.

We don't ever consider our mortality until we get to old age, which is why it is such a shock when someone tells us we may not get to old age.  If we followed all statistics for why people died we would never get in a car or plane, take a bath or have carpet on the floor.  There are so many other things out there which can keep us from old age, but we just ignore them and keep on going.  

While you can't ignore your diagnosis, you can (and it seems like you are) do what you can to end up in that positive column.  Now is the time to think about how to fill the time you don't feel like doing what you have been doing...Perhaps audio books, the video movies you like to watch, writing part 1 of your memoirs (other parts to follow after you kick cancer).

Keep on as you are...positive to the max!

Hugs,

Marie who loves kitties

P.S.  A port is generally placed closer to the collar bone rather than the neck.

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