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Mom not so good...

Edina77
Posts: 13
Joined: Oct 2004

Well, well, well... I got to feel the chemo side effects and ... i have no words for it.
My mom got her first chemo last monday. Tuesday she was fine. wednesday she could not get out of bed. No food, and she had to be in the bathroom 24/7. She lost 5 Lb in one week. We went today for second chemo and of course they did not give it to her. Doctor wants to see us on thursday.
I dont know if he will change the dose or give her something else... i don't know anything anymore. She is so weak now she cant even eat alone. Can some of you share your chemo stories, good and bad? It always helps. If it was not for these stories here , i would be in a mental hospital by now. Yoiu guys always pull me out of my black hole.
And one more time- is it really possible she can overcome this monster???? Is that even possible? Because if i knew it is not, i would not put her through this chemo nightmare anymore.... but i am scared that if we dont do it she will not have a chance to fight this. And if we keep doing it, she may just be worst then she is..... i dont know. You guys can probably tell how messed up i am now.
Thanks in advance.
Edina.

johnom's picture
johnom
Posts: 86
Joined: Jul 2004

Dear Edina,
I can truly feel your frustration and hurt as you fight this battle with and for your mom. Listen the truth is everyone has at least some chance for remission. Even if something is 95% certain, it is still 5% uncertain, and someone has to be in the 5%.

However, you raise a very valid question to discuss with the doctor, and of course, let your mom decide. If it truly is going to make her miserable, with no benefit, why do it? Wow. That's a tough, personal call, but I can tell from your notes that your mom is truly a fighter.

Always look for support on this web site. I do. It has never let me down. The people on here have been through literally everything. You two are not alone and never will be.

I and everyone else will put you in our prayers. This can work out!

steved
Posts: 836
Joined: Apr 2004

This a rough time for both you and your mom. The docs are the best people to decide on what concoction of drugs to give but it may also be that you guys have some tough decisions to consider in the near future. It is always a difficult balance with chemo- weighing up the beneifts- which are easy to quantify on a population level but impossible to stae for an individual- against the down side with side effects. I am on chemo att eh moment and have decided the improvement in my chance of not having a recurrence is worth feeling crappy for a week or two each month. but it is a decision i had to make.
Johnom is right in saying htat even in very advanced cancers where the remission rate is as low as 5% - somebady has to be that 5% and teh docs can't predict very accurately who that will be. But it is all about playing the odds- (bit like a very unpleasant poker table with very high stakes) and giving yourself the best chance. But it is also about quality and if time is limited you wouldn;t want it to be full of side effects.

No one can make these decisions for yo but we are here to help support you through it. I am rambling a bit today as I'm full of a cold and my thoughts aren't that clear but I hope it helps some.
Let us know how things go with the oncologist,
Best of luck,
Steve.

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Edina,

I'm so sorry for your mom's struggles right now. Dosages can be adjusted and maybe that might be a solution. In any event, we will be keeping you both in our prayers. I hope the visit with her doctor on Thursday will help you decide the best course of action.

Kay

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Edina -

A lot of that 5lbs was probably water weight. It's very important to drink a LOT of water and keep yourself well-hydrated during chemo especially if it affects you the way it is your mom. It hit me that same way. I recall one time I went in feeling like I needed some IV fluids - the corpsman gave me 5 litres before I had to pee. They were amazed that I was even walking. Drink a lot of water (not tea, coke, juice - WATER)

Lke I said, I had the same bathroom issue as your mom. Lomotil helped some, I also had some little pills that were, essentially, atropine. I don't recall what they were called, but they definitely put the brakes on the runs. It is something your body will adjust to over time (trust me).

Has your mom had a colectomy of any sort? I don't recall. I had a right hemicolectemy they took the ascending and transverse colon. With the removal of the right (ascending) colon, I guess you experience a little more of the runs because the right colon is the part that typically "recycled" the water in the waste stream.

Like Kay and the others say, the doc can atenuate your mom's dosage, but just understand that it's normal. It will get better. She will get it under control. In the mean time a couple of suggestions:

1. One of those cushioned toilet seats

2. Some candles for the bath (SCENTED!)

3. A serious collection of old Reader's Digests

4. Maybe move a TV into the Throne Room

(You think I'm joking; I did them all but the TV - I don't really watch all that much)

Hang in there. It will get better!

- SpongeBob

bsrules
Posts: 296
Joined: Mar 2004

Ednia,

Hello!!! I agree with everyone!!!! I know to well how frustrated you are feeling!!!! My husband Bob had some of the same reactions. It is one heck of a roller coaster ride but things do get better!!! Sponge Bob is RIGHT when he said have you Mom drink A LOT of WATER!!!! It is VERY IMPORTANT!!!! It is the only way of flushing that mess out of her system!!! There are alot of different drugs that they can try!!! Ask a lot of questions!!! Knowledge is power!!! I know this for a FACT!!!! The more you know about this the better you will feel!!! Hang in there!!!!! Things will get better. Just take one day at a time!!! Take care of yourself!!!!

Best Wishes and Prayers your way!!!!

Sue

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Edina--enter the "angel" category. Thats what kanga calls his dear Jen. You carers have the hardest part in all this. The strength you show will be such a godsend to your mum and believe me us cancer sufferers know onlt too much how it affects carers. Your pain and anguish is is something that needs a tower of strength to overcome--but you can do it!
Doing chemo for me gave me only a 3% improvement in the fight against a re-occurence. My onc. said it was ultimately my choice to do it but--well--3% advantage is at least an extra chance to kick its butt. As John says here--the benefits for or against current and ongoing quality of life is something your mum has to decide.
Our love is with you, kanga and Jen

btw--the last 2 months of my chemo was so bad I cried--did not want to complete it--Jen's support and that of my friends got me thru!!!

Edina77
Posts: 13
Joined: Oct 2004

Hello... wow. Thank you all so much for taking your time to write your kind words. I am dead serious when i say that you guys are the only thing that gets me through these hard times.
Well... I have started to accept the fact that i simply cannot keep my mom here forever. I am finding my peace with that. Not that it is any easier, oh no... it's just as hard. But i think that first feeling of shock and anger and the question 'WHY MY MOM??' are going away. I just want to enjoy the time that we have left,and only God knows how much time that will be.
So, since she did not get her chemo on monday, she is waking up early in the morning very hungry!!!! She is eating pretty good again. And i am juicing again. Oh, Carrots and apples is her favorite.... and i make her driink this essiac tea and green tea. Tomorrow we are meeting with the oncologist. We'll see what he says. She still has the runs though. That is probably cause they took all of her colon out .... at least she does not have the pain and she got her appetite back. So, things are not bad but also not great. It's OK. We'll be fine.
On the other hand, i am starting to feel tired and out of place. I left my job, the city i livced in, my cat... everything. That is starting to get to me. I wish i could get back to my every day life at least sometimes, on her good days. But , i am 800 miles away from my every day life. Still i am ready to give up even more if i have to just so my mom is ok.
Thanks again for listening. You all are great people. When i pray for my mom, i pray for everyone else who is suffering from this horrible desise. Hang in there and God bless.

Edina.

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