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grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Hi all, I went to chemo doctor today and he did bloodwork and my counts are still too low, so no chemo this week either. And....he also said there is stool where my rectum used to be, which isn't good, because I have permanent colostomy and nothing down there. All was removed. All that's there now is tumor and it's still growing, because my stupid body won't cooperate so I can have the chemo. I'm going to have shots every day this week and then hopefully will get to do chemo 23rd and 24th, and also have shots during the chemo too. I am so upset right now. My surgeon just keeps saying that the tumor is shrinking and is not being active in my care at all right now. The chemo doctor said he needs to do something about the stool being there and he said he disagrees and that my tumor is growing. I would believe the chemo doctor first, because he seems to be wanting to get things done and he's always completely honest with me about things and he also looks at it almost every week, not like the surgeon who sees it every month or two. I am just so angry with my body right now that I just want to cancel all my appointments and just give up. I know that's not the thing to do, but I can't help but feel that I'm spinning my wheels but going nowhere, but backwards. Thanks for letting me vent. Sorry so long. Need some encoragement bad right now. Sorry to whine yet AGAIN. Love ya all, but I'm just feeling that this beast is winning and that it's going to eventually do me in. I never get any good news to lift me up. Always bad. Sorry to go on again. Love you all and you've been so good to me.
Love and prayers, Judy(grandma047)

bsrules
Posts: 296
Joined: Mar 2004

Judy,

Hi Sweetie!!!!! You have been on my mind constantly for the last few days. I am so sorry that you feel so bad. If I could hug you through this box I would and never let go!!! I know only to well how you are feeling. Bob felt the same way at time when not was going his way. You are Right to trust what your oncoligist says. He seems to be the only one that has been honest with you. That is what is most important!!! Bob was at a point where you are now and he just wanted to throuw in the towel as he had to go in the office in a wheel chair as he didn't have the strength to walk in. I don't know how he did it but he took all the shots and we got as much calories down him for energy as we could to keep his system going. He had a bad couple of weeks which his chemo was cancelled also which upset him for the same reasons. But once his counts finally came back up he gave it everything he had. He got back to his only self to a point. Being frustrated and angry is normal and good to express it!!! You are fighting for your life right now and it is giong to take everything you have even energy that you don't realize that is there to get through this!!!! You are a VERY strong willed person and with your hubby by your side you will get back on you feet --- I have all the confidences in the world in you!!!!! Remember that I am always here for you no matter what!!!!

Hang in there!!!!!! I know that you have the strength to fight this!!!!

Tell you hubby now it is his turn to give you the extra hugs and kisses!!!!!! Please tell him Happy Birthday for me!!!!

Keep in touch when you can!!!!!!

Love Always!!!! Prayers and Hugs coming your way via a rainbow!!!!

Sue

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

Judy, (talk about long, check out below)

You are probably not going to like my post, but so be it. If you really wanted to give up, you would never come to this site. You know we would never let you do that. First off, a rectal tumor is not going to kill you unless you let it. The cancer needs to spread to your liver before you really should get scared. Trust me, that is what I have been dealing with for over a year now.

Now another thing, why are you mad at your body?

What have you done for it lately? Do you drink at least a half gallon of water a day? Have you cut out refined sugar and other nasty foods? Are you eating lots of whole wheats, fruits and veggies every day? Are you taking any supplements to help with your blood work? Do you exercise regularly?

Personally, I think cancer grows inside of us because we give it a nice happy home to nuture in. If we don't change that, the cancer will not vacate our bods. Science knows that all of us are exposed to cancer several times in our lives and more times then not, our own immune system fights it off for us. Science can not tell us why our immune system doesn't fight it off sometimes....yet. All the medical docs have to give us are IVs and pills to treat the tumors, they give us nothing to treat the root cause as to why the cancer likes our innards in the first place because they don't know. All my research tells me only we can attempt to do that with what we put in out mouths daily.

I am starting to realize that the battle is not against cancer, but against ourselves. Changing nasty habits is really hard and it is so much easier to wait for that one quick fix "pill", so we can keep on doing what we were doing. There isn't one yet, so the chose is yours. Do something about it now or sit back and wait for medical science to save you.

Knowledge is your best weapon today, stop waiting for the doctors to "fix everything". They don't have all the answers. Heck, they are still figuring out all the questions.

As always I wish you the best, but treat your bod as a temple and it will repay you. God did not give us potato chips, sodas, etc. Man did. Eat what God gave us and I bet your body reacts differently. Your body is fighting hard for you so help it fight.

Lisa P.

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

First of all, you probably won't like my post either. I appreciate your suggestions, but there are a few problems with following them. First you said that I shouldn't be worried unless it went to liver. Not what my chemo doctor is saying. He can't see my pelvic area on a CT because I have to much scarring from previous radiation and surgeries. He told me if it gets into my pelvic region that it could affect the nerves in my legs and they would become useless. He also said that since I'm still having to staight cath myself, that I probably have damage to my bladder from radiation. The reason I was in the hospital last week was because of bleeding, they think came from my vagina. I don't have a uterus or ovaries,so they don't know why I was bleeding from there. It's a wait and see situation. They won't know more until I have surgery. Which, no one knows when that will be because I haven't been able to do chemo and the tumor is growing. Nothing to worry about??? I don't think so. Don't be mad at my body??? Well, it's not responding to chemo and now I can't do chemo because of low blood counts. Why shouldn't I be a little angry?? As far as exercise,my blood counts are so low that I do good to move. If you read Sue's post, you'll see that she said her husband went through that too. Right now it hurts to even move and all I want to do is sleep. So exercise?? I don't think so. As far as diet, with the colostomy I have to be careful what I eat. I can't have corn, broccoli, cauliflower, I can have potatoes and green beans and I try to eat them as often as I can. Right now I don't have an appetite, so whatever my husband can get me to eat is good. I've already lost 90 lbs since I have been diagnosed. So....not too much eating here. I can't make myself drink water. I always feel bloated and then get nauseous, which I do a lot. Changing nasty habits??? I've never really had any. I've never smoked or drank. I've tried to eat good, that is before the cancer and I always used to exercise, but I got rectal cancer at 49, with no history of it in my family. Also, if I can't trust doctors to try and fix this cancer, who can I trust??? I trust God and His plan, whatever that is. That's really where I put my trust and if I can't come here and vent once in a while, then what's the purpose of this site??? Also you said God didn't give us potato chips and sodas. God gave us everything. It's up to us to make the choices we should make. Sometimes chips and dip is all I eat for weeks. So....if it keeps me alive, then more power to it. As far as helping my body fight, I would not do the chemo if I wasn't trying to fight. I don't like chemo, but I NEED it. Again, I don't want to upset you. Just want to sit thinks straight. Emotionally, I am doing better today. Everyone has an off day. I hope even you allow yourself to have one once in a while. If not, you'll be the one that's body will suffer. You must let out things once in a while. Sorry, if I made you mad and sorry so long. Just needed to let you know, NO I"M NOT GIVING UP!!!!
Love and prayers, Judy(grandma047)

CAMaura
Posts: 719
Joined: Feb 2005

Good Girl; I applaud you for writing back to Scouty. So glad you are feeling a bit better today.
Best wishes, Maura

KKLoop
Posts: 73
Joined: Mar 2005

I am thankful that this sight is full of real people. I am getting Mom online this weekend. She has days of being angry, days of I am beating this and days of what did I do to get this...no drinking, smoking....I exercised..... I am thankful to see that you are all real!!! You mentioned that you have lost 90lbs. Mom is losing quickly too. She is frustrated because she thinks she is eating more and still losing. Any suggestions? Anyone found a trick? Her appetite is better and taste seems to be better since she is on Avastin. She looks so fraile....I worry about her but don't want to always NAG about her eating...

CAMaura
Posts: 719
Joined: Feb 2005

Hi Scouty. You don't know me; I am relatively new to the site. I hope to meet you someday as you seem intelligent and are definitely making an effort to take control of your own care. That is wonderful. But may I comment on your posting to Judy. To be frank, it was badly done, badly done indeed.

The information you have to give is wonderful; your delivery and the context - might need a bit of softening and reconsideration. I am not saying - "hey, be a milk-toast person" - but have a little compassion. This woman is feeling horribly.....and you blast her? Maybe when her counts rebound....or the docs - which she seems to dearly need - figure things out, your nutritional information could be very useful. But at this point, she just needed a soft place to rest until she regained her center.

I am no communicaton genius, but I don't respond well to being barked at......It is just a thought for you - not damning criticism.

Take care and you are free to comment back to me....I know this is a public discussion and we are welcome to write what we think.

See, the kicker is that I was the fitness and nutrtion queen; we are talkin' lifelong commitment to Organics, Triathlon trained, no red-meat......tons of whole grains, broccoli, wild Salmon, blueberries, carrots, juicing!.....supplements. And no family history.
I was and am a VERY healthy and athletic person.

Well, there you go: tumor found in October. I don't know if, when or where I came across something environmental which triggered a gene change; I don't know for sure how stress played a part in triggering the tumor formation or growth. But I do know this: cancer can happen to someone who can count the number of times she has had fast-food during 46 years on one hand......
So it aint' all that clean and simple.

Again, feel free to write.
Cheers, Maura

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Thanks Maura for expressing what I felt even better than I did. I really try to do everything I can to fight this beast. And you're right, you can do everything right and still get cancer. How about babies that get it??? Did they eat something wrong??? Maybe they didn't exercise enough. I don't know why it happens, but it's not place to question. Like I said, it is all in God's plan and I'm doing my darnest to accept that and dealing with it in the best way I know how. And...if that's whining a little, so be it. Thanks for caring about my feelings.
Love and prayers, Judy(grandma047)

sojourner2
Posts: 7
Joined: Feb 2005

Judy,
Please don't ever give up--Keep the faith. I am new to this forum, but I am familiar with your story and your angst. I am not supposed to be here, but still kicking.
May God Bless You,
Ronnie

rejoyous
Posts: 259
Joined: Nov 2004

Dear Judy,

I feel I've hung out with you long enough on this board to know that you aren't really giving up. You're just telling us how you feel. And boy, I really understand how discouraging it must be to get these disappointing and contradictory reports from your docs, and also to be prevented from doing the chemo. AARGH! But I know you're a fighter and after you get pushed down you always come back up. You can do this, Judy. Be patient with your body, let it rebuild, and try again. And please keep letting us know what's going on so we can help encourage your magnificent spirit.

Oh, and one other thing, what's Lisa P. aka Scouty talking about that it has to spread to your liver before you get scared? I thought that I'd read on this site about several liver metastices that turned out fine. IT'S NOT OVER UNTIL IT'S OVER! Live strong. I know you will.

CAMaura
Posts: 719
Joined: Feb 2005

Dear Judy,

I am so sorry that you are down. Please know that I wish you very well..and hope that you find some confidence - in at least one of your docs; that is the part of your note that worries me the most. Can you be offered another opinion somehat quickly? The delay with chemo for another week may be just fine....but I know you are quite anxious to begin. Saying a prayer for you that guidance and the correct treatment will come soon to you.
Hugs,
Maura

nettie4
Posts: 145
Joined: Mar 2004

hi there. my heart goes out to you. i know of struggle like yours too. it seems every turn there is something more negative coming at you and you get to a point where you want to act negativly and give up. when i feel that way the first thing i do is pray and call someone i know will get me back on track. it is amazing what the body will endure it is a mysterias machine but keep fighting as hard at times as it may be keep going, from what i have read you have fought through bigger challenges than this. i know you are venting and that is good i dont think there is one of us on here that has not been at that point but now is how you will handle it. go forth you worrier and know that your back up is here to help you fight. the Lord give you peace.

nettie

KKLoop
Posts: 73
Joined: Mar 2005

Don't you dare give up! You keep fighting. I am curious how can you still have stool in your rectum if you have an osti bag? I didn't know that was possible. My experience has been that you heal from the inside out and then the opening closes. I hope I am not being too personal...ARe you saying that you have another tumor where the old rectum was? I am new to all of this and never even knew any of this could happen.

I will pray for your strength. You will start treatment very soon-you have to believe that!

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Yes my rectum and anus was removed when I had my last resection and permanent colostomy. It was supposed to heal from the inside out, but never did. A tumor started growing there and is continuing to grow. My chemo doctor said there is stool there too. I don't understand how it could be there either, as I have no passageway to there. The only thing my husband and I could think of is that the tumor has grown inside and attached itself to the colon and maybe has torn a hole in the colon. I'm not a doctor, just my guess. The chemo doctor is going to get in touch with my surgeon, since my surgeon doesn't seem to want to do anything about anything. So...I'm playing the waiting game. While taking shots to try and bring my counts up enough to take chemo again. Thanks for your concern and no you're not being too personal.
Thanks for your prayers
Love and prayers, Judy(grandma047)

KKLoop
Posts: 73
Joined: Mar 2005

Your response is so helpful. Again, Mom was diagnosed at 49 with no family history. It is good to know about other complications that could happen. Thank you for your openingness-it is through sharing that everyone grows stronger.

JKendall
Posts: 186
Joined: Nov 2004

Hi Judy....It's been a while since I've been able to check the postings, but I'm catching up.

Go back up the screen to what Sue wrote, read it again, then pause and read it once more. Soak up that encouragement and support. Sue nailed it.

You come here and vent as much as you need to. Stay strong and stay faithful to yourself.

Take care. Jimmy

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