Hi! I'm new and really scared!
Comments
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This comment has been removed by the Moderatormom_2_3 said:Embracing the positive
Donna,
It sounds as if you are embracing the positive aspects of having this disease. That is great. It is important to realize that this will change your life completely and forever. But if you acknowledge the good things then it will be much more positive and you can take those positive changes into the rest of your long and healthy life.
Before my diagnosis my husband and I already had a great relationship, we have been together 15 years. But after diagnosis I find that little things that irked me before (why can't he turn his socks inside out before he throws them on the floor...????)
don't bother me anymore. Life is too short to be snappy about little things. Before my husband didn't embrace my spirituality. Even though he was raised Catholic he rejected baptism for our children and joining a church together. Since he has come to realize that a church can provide a supportive environment for our kids and we have been "church-shopping" the past few weekends to find one we both like. He now encourages spirituality, has even been doing some reading of his own.
Before diagnosis I was relatively lax with the kid's diet. Not anymore. No candy except 2 pieces on Friday. I avoid the center aisles of the grocery store -- nothing with sugar as an ingredient or corn syrup or partially hydrogenated oil. It was tough at first but easy now. In the evening they ask for grapes or oranges or apples when before they asked for vanilla wafers or other empty calorie food. And what a change in their behavior -- less sugar = less crazy!
Before diagnosis I spent WAY too much time on the internet. Politics would drive me crazy. Since I have let it all go. In the morning I check here and one other support forum and that's about it. I am working on projects around the house, projects for my kids and trying to get more out of my time. It seems I always planned too far ahead. Last year I was shopping for a retirement home and actually went down to SC to look for one. Talk about planning ahead! I have thought since that I spent so much time looking ahead that I didn't spend enough time in the day I had. So while I still save for retirement and college savings I don't ruminate on the future like I did.
Before diagnosis I was more impatient with my 5 YO and 3 YO. Since, I have discovered worlds more patience with my children. My relationship with my son has improved greatly. We love to snuggle and he loves to hear stories about when I carried him in pregnancy and all that (luckily he has not been curious about how he actually got into my tummy.... LOL). I also spend lots more time with them. I used to be very gung-ho with work. I went back after 3 weeks with my son and after 6 weeks with my 1st daughter. Now I will stay home through this year with my youngest and I am cutting my daughter's pre-school hours down. My son is in kindegarten. Perhaps God wants me to stay home with our youngest so that's what I am doing.
Before diagnosis I didn't realize the extent of caring and love our families and friends and neighbors had for us. We get notes in the mail, emails, calls, people dropping off food, offers for any kind of assistance. It is the most amazing feeling to have that and I now make it a point to increase my empathy for others in a more active way.
Physically I feel great. Since juicing and changing my diet I have lost 50 lbs. I did lose some pregnancy weight (ie baby) along with that but I am now down below pre-pregnancy and I did need to lose some weight. I need to lose about 10 more but figured surgery will be good for that as the DR said I won't be eating for most of the week after the surgery. My face is a lot smoother than it has been in a while. And I mentioned my hair isn't growing anywhere so good-bye to shaving for a while! Yahoo! I do realize that there will be tremendous physical challenges in the future but as they come I will deal with them. Maybe I can get that tummy tuck during my colon surgery...
Finally, before diagnosis I shuttled the kids to kindegarten and pre-school and my husband didn't do any drop-offs or pick-ups. He would work late many many nights and the kids didn't see him a lot during the week. Now my husband refuses to let me take the kids to school as he is afraid I will pick up something (get cold or something). That means he is home every night by 6:15 and I have dinner on the table and we are having a family dinner that I always wanted. My husband taught our son checkers (and now no one in our family can beat him) and we just started teaching him checkers so as opposed to videos on tv we spend lots more time on games and crafts in the house.
So you can see that a lot of positives have come from the diagnosis. I am grateful for these changes and hope they last a long long lifetime for me.
Amy
PS I mentioned my list of survivors. I read through the names before bedtime so if I wake up and start to have negative feelings I just recite the names in my head. I even found one woman on another board who had 3 kids before Stage IV and had one child after her diagnosis. She is doign great and is cancerfree!
PPS Check out Dr Lenz's blog. This is his new blog (http://fightcolorectalcancer.org/category/dr_lenz) and this is his old blog (http://www.revolutionhealth.com/pages/colon-cancer---rhg). The old one has more content but one post I like especially is where Dr Lenz discusses many of his 10 year metastatic cc patients (that are doing well and just coming in for scans to watch for recurrence) and he talks about the fact that because they are so closely monitored they actually discovered early stages of other primary cancer that they were able to treat successfully because they were caught so early. So all this medical attention can help head off other issues. Another benefit!
PM me if you want some other great links for reference!0 -
Foods That Fight CancerShayenne said:Thanks Amy!
Wow! I was just reading about the Budwig diet and cancer and how I need to cut out the sugar, someone else had to told me that cancer feeds on it as well. That was a very hopeful post you put on here, and never knew the statistics were really out of whack. I am getting more hopeful as I come here to read everyday, and know I just feel like it there's something God wants me to do out of this, and hope I can find what, I was thinking of getting a juicer, as I was wondering, while reading the Budwig diet, how the heck would I juice a carrot or celery.. lol..it's hard to think of letting go some things you did once enjoy, but anything to help myself.
I may go buy some flaxseed oil to mix with that cottage cheese, and honey, I think I need to purchase just some good recipe books to help with my diet, and possibly my families diet.. they eat way to much junk as well, and wouldn't hurt for them to lose a few pounds as well, I have always wanted to eat healthy, just not sure what's the healthiest thing out there, how to make things taste good, would anyone have any cookbook suggestions on foods that fight cancer?
I definitely need to find a good church, I was raised Catholic, but not into those organized religions, and most of these little churches around town here are scary, they are abit extreme to me, it's bible belt, and alot of these people who call themselves Christians are very hypocritical and judgemental, and make you feel like an outsider at times, so I haven't been to one in a while, I have a more personal relationship with God, and always believed, but would like for my kids to get to know him better as well, but through not through these types of churches. I am on some prayer chains now, and hope to stay on them, and get on more, I'd love to maybe find something non-denominational that just wants to talk about God and not about how other religions are wrong, and blah blah...some of these pastors are unreal here.
Good idea about the notebooks! wow... all those people you know that are cancer-free from this is sooo promising, and hopeful, I was crying while reading all that, I must get the thoughts of doomed from my mind, and really move forward, it's hard sometimes, and not good to think about it, but to even have that ray of hope is alot of help for me~
Thanks for that super post Amy!
~Donna
Right after my colon resection, a friend gave me a paperback that sounds like what you are looking for. It's called "Foods that Combat Cancer: The Nutritional Way to Wellness" by Maggie Greenwood-Robinson, Ph.D. I refer to it constantly for the fiber count in foods since I'm supposed to eat 25 - 30 grams of fiber a day.
About a month after my surgery, I met with a nutritionist at the cancer center. She gave me a lot of good advice and information. She suggested ground flax seed rather than the oil because the flax seed is better absorbed by the body than the oil. I was still in so much shock from my diagnosis (I felt like I'd been hit by a train) that I had the nutritionist write down everything she wanted me to remember.
When church shopping you'll know when you find the right one. Just pray about it and God will lead you to the right one.
Joy0 -
To Nana & Donna
To take a link off the message center and open it up, or to post it somewhere else.... left click at the edge of the link, swipe it(blue it out), right click on it, left click on copy,
Move curser to address strip at top, left click again (blue out), right click there, left click on paste. Than hit enter..... to open that link.0 -
Copy and paste...unknown said:This comment has been removed by the Moderator
That bath sounds wonderful. I am not even allowed to shower till Sunday, till this mediport heals, and not get the site wet, but I can sure sit in the tub and just soak, and try not to get it wet...
OK, the way I copy and paste off the site, I highlite the link, by holding the left clicker of the mouse from beginning to the end, which will "Highlite" it, then right click on the highlited area, and another menu should come up, and hit "Copy" then go to your browser at the top there, click it, and then another menu should come up and hit "Paste" and boom! the addy should lead you to the way 0 -
oops...mono5 said:To Nana & Donna
To take a link off the message center and open it up, or to post it somewhere else.... left click at the edge of the link, swipe it(blue it out), right click on it, left click on copy,
Move curser to address strip at top, left click again (blue out), right click there, left click on paste. Than hit enter..... to open that link.
Saw this one alittle late, after I just showed Nana as well lol...0 -
amazingShayenne said:oops...
Saw this one alittle late, after I just showed Nana as well lol...
You are amazing people. You have all chosen hope and to take the best out of this. Donna, I know what you mean about your marriage. Things have been good with us all along but since ****'s diagnosis 1/12/09 **** says it is like we are newlyweds again. Interesting how something so difficult strips us down to the basics; love, family, friends, God and enjoying the beauty in life.
Take care.
Kathleen0 -
Hi Donna,
I am new to this
Hi Donna,
I am new to this site also. I was diagnosed in 2005 with stage 4. I got opinions from 3 oncologists and choose the one that I could trust and felt comfortable with. I thought I was stuck with the doctor that diagnosed me. Since then I have had 32 chemo treatments, 6 weeks of radiation and 3 surgeries (2 lung and a resection), I now have a colostomy bag. It was hell but I made it through. I learned alot about myself during this time. I have been cancer free since last March. If I can do it, you can do it.
mkkuehn0 -
Hi Donna,Shayenne said:WoW....
I actually hadn't had a great relationship with hubby for the last 2 years. He seemed so "distant" with the kids, didn't do much for them, he works from April-Dec long hours, and sometimes 6 days a week, and then gets laid off during the winters since road construction shuts down for them.. it made me bitter to have to try and go to school, then work, and have to try and rotate my schedule to get the kids to school, to get them to and from their afterschool activities and sports, and so on, I was getting worn out.. I was being split apart in 4 different direction, not including my hubby and I's own direction.. it was all about the kids and whatever they needed...and hubby did some stuff in the past that I never did get over, nothing like cheating, but let's just say he used to drink alot, and did some stupid things because of it, we have slept in separate rooms for 2 years because of it, and everything he did around here irked me, and I had to laugh when you said that about your hubby's socks, why can't they turn it inside out, I am the same way.. he would just have them in a ball and think I wanted to touch it or something to throw in the laundry.. everything he did irked me...
Until now.. I can't believe how he has stepped up to the plate now, and doing more for me with the kids, he is laid off, and instead of lazing around in his room playing videogames or watching TV, he is going to be busy putting a new bed, floors and paint for my room.. he has been cooking, even though it's not good, at least he tries lol...he has been kidding around with the kids more, and I'm liking seeing the connection he is trying to get with them, I feel like this is bringing us so much closer together, it's unreal.
I got scared abit ago, because as I went to the bathroom, blood came out, and I really got scared.. I can't tell now if it will be period or something else.. he called the nurse for me, and they just told me to wait till I see the Dr on Tuesday, I'm not hemorraging, but I've always had irregular periods.
I think we are learning to appreciate each other more and more, and learning about what would happen without the other as well, and maybe this is what had to happen to make us both see what anger and all can do, I will never get angry over stupid stuff again. I have the closest relationship with all my kids, they are my life, and everything I do is always in their best interest, I took them over him as well, they are my first priority, I have always taken them everywhere with me, restaurants, malls, movies, you name it, we do it, I enjoy my kids alot, and want to keep enjoying them more and more. I want to see them grow, and get married! I will see them grow! I am getting more positive as I read the posts, thought that blood thing did set me back abit, and got me scared, seems it's gone, I had 2 units of blood just put in me last week, and don't want to be losing blood somewhere again.
We play alot of board games, Clue and Monopoly are a favorite, and I been teaching them cards ...lol.. Blackjack 21 and poker!
I had to laugh about you not having to shave the other hair on your body, which sounds good to me, and someone just told me to pick up that book "Crazy Sexy Cancer" I think it's called, which she said was supposed to be funny, and will read that dr's blog.
I hate to be deprived of some good treats, my kids and I only do really eat chicken or turkey, we aren't red meat eaters here, but I know they like healthy stuff, and won't mind to eat alittle healthy, as long as it takes good, but they do like their occasional sweets. They actually aren't candy eaters, but they like pies and cakes, which is ok with me
I'm feeling abit better, and though sometimes at night, I lay there with my head spinning at all this, alone, I scare myself..that maybe I'm fooling myself and it just isn't going to happen, that I'll get better, but when I come here, I feel like I'm so wrong, everything will get better! Thanks so much to all of you for helping me through this!!
~Donna
I'm sorry I missed
Hi Donna,
I'm sorry I missed your post when you originally posted it! You've been through so much and you're being so brave! You're an inspiration!
I too went through the "husband thang" but he was actually my boyfriend at the time. I was actually figuring out how to leave him when the cancer hit. We'd been living together and our kids love each other and it was going to be a sticky, painful, messy extracation and I didn't have a clue how to go about getting out. The cancer hit and I remember my first thought when I woke up from surgery and saw his face was, "heh, wonder how long he'll stick around." I tell ya, I've never seen anyone do a 180 faster than my now husband. He was there for me in ways I never even thought possible! When I got home from the hospital, that very day he gave me a ring. When I got news of the third cancer he looked at me and the first thing he said was, "well, shall we get married today or tomorrow?" It took me awhile to be well enough to actually get married, but we got married two weeks after he asked me. He's been wonderful ever since! He told me he was embarrassed that it took a possible tragedy for him to realize what he'd almost lost. I'm really glad your husband has stepped up to the plate too!
Glad to have you here!
Hugs!
Jorie0 -
Thanks mk!mkkuehn said:Hi Donna,
I am new to this
Hi Donna,
I am new to this site also. I was diagnosed in 2005 with stage 4. I got opinions from 3 oncologists and choose the one that I could trust and felt comfortable with. I thought I was stuck with the doctor that diagnosed me. Since then I have had 32 chemo treatments, 6 weeks of radiation and 3 surgeries (2 lung and a resection), I now have a colostomy bag. It was hell but I made it through. I learned alot about myself during this time. I have been cancer free since last March. If I can do it, you can do it.
mkkuehn
You were so blessed, and still are, I have alot of hope when I come to this site, and sometimes alone at night, I think, "maybe I'm just false hoping, maybe it won't happen for me" the doubts start to seep in and then I find myself bawling like a baby again, but try to snap out of it..I know the cancer is already trying to take me when I start thinking those stupid thoughts, and then do my turnaround, "No way am I going to let this take me yet, I will do what I have too, I will fight"...I sometimes feel like Sybil now, dealing with all these personalities I never thought I had lol...talking and fighting with myself!
I was also wanting to leave hubby, and wow.. he is amazing, and surprising, I really didn't think he'd have it in him to do all this stuff for me, and he's so laid back.. that was an awesome story getting married 2 weeks after he asked you, brought tears to my eyes! I am glad that we're happy again, and upset that it had to take this to bring us closer..that's what makes it all sadder for me, those years of being so angry, and here I am sickened with this stupid disease, and needing to fight to stay alive so I could enjoy him again!
I actually am looking forward to my first meeting with my oncologist and discuss my plan of care.. I am wanting to just fight now, and not wait any longer!0 -
lidocaine/prilocaine cream
something for the "ouch" of accessing the port... I was given a prescription for a cream called "lidocaine and prilocaine cream, 2.5%". I rub it on my port area about a 1/2 hr. before going in for chemo. Sometimes, after a while of getting chemo, the skin over the port can become leathery, making it difficult for them to puncture you- that hurts! That's when they gave me this cream. It not only helps numb the area, but it softens it too.
It's worth asking for it! Good luck on that!
Lisa0 -
Thanks!lisa42 said:lidocaine/prilocaine cream
something for the "ouch" of accessing the port... I was given a prescription for a cream called "lidocaine and prilocaine cream, 2.5%". I rub it on my port area about a 1/2 hr. before going in for chemo. Sometimes, after a while of getting chemo, the skin over the port can become leathery, making it difficult for them to puncture you- that hurts! That's when they gave me this cream. It not only helps numb the area, but it softens it too.
It's worth asking for it! Good luck on that!
Lisa
I will definitely be asking for something to help it, it's scary too look at, and wonder if I even made the right decision getting the port, but thought it would save my arms abit. It's been a week and these sterry-strips still have not fallen off yet though, they did say it may take 7-10 days, I see the doctor on Tuesday, so hopefully it's off by then!0 -
You made the right decisionShayenne said:Thanks!
I will definitely be asking for something to help it, it's scary too look at, and wonder if I even made the right decision getting the port, but thought it would save my arms abit. It's been a week and these sterry-strips still have not fallen off yet though, they did say it may take 7-10 days, I see the doctor on Tuesday, so hopefully it's off by then!
You will find out that it is easier (in my opinion) to have the port. And I had no pain really when they accessed. The nurses would say 'big breath, now let it out" and on the out breath they pushed in the needle. Only once did I have a problem, but it was because of the port, not the nurse (long story...involves a Dr. Doom!)
When I go in next week my surgeon is also replacing my port with what he calls a "Smart Port" He says you can even draw blood, etc through it this way.
Oh, and my steri-strips were on for three weeks or more, because I was hooked to a pump 24/7 and the adhesive 'window' they used covered them.
you will do fine. it's all scary at first, but then becomes your routine, or as my friend told me, my 'new normal.'
Vicki0 -
Wow...VickiCO said:You made the right decision
You will find out that it is easier (in my opinion) to have the port. And I had no pain really when they accessed. The nurses would say 'big breath, now let it out" and on the out breath they pushed in the needle. Only once did I have a problem, but it was because of the port, not the nurse (long story...involves a Dr. Doom!)
When I go in next week my surgeon is also replacing my port with what he calls a "Smart Port" He says you can even draw blood, etc through it this way.
Oh, and my steri-strips were on for three weeks or more, because I was hooked to a pump 24/7 and the adhesive 'window' they used covered them.
you will do fine. it's all scary at first, but then becomes your routine, or as my friend told me, my 'new normal.'
Vicki
I was just on facebook and joining some cancer networks, and boy did some of those stories scare me on there as well now, paralyzed by the fear that alot of people were fine one day and then a couple of months later they were gone because of this damn disease, man I really am getting depressed, and still struggling with getting in the right frame mind of here, is there is any right frame..
With my port, they said they can use it to put the chemo medicine in, and also draw blood, I forgot the right word it's called, some kind of dual lined port..
Taking deep breaths, and really getting anxious.. I was doing good, but now getting on the scared side of hopelessness again.. why the hell am I drawn to reading peoples cancer stories, I look for hope in all, but so much misery out of it..time to kick my butt, and push myself up again...0 -
you're full of life!Shayenne said:Wow...
I was just on facebook and joining some cancer networks, and boy did some of those stories scare me on there as well now, paralyzed by the fear that alot of people were fine one day and then a couple of months later they were gone because of this damn disease, man I really am getting depressed, and still struggling with getting in the right frame mind of here, is there is any right frame..
With my port, they said they can use it to put the chemo medicine in, and also draw blood, I forgot the right word it's called, some kind of dual lined port..
Taking deep breaths, and really getting anxious.. I was doing good, but now getting on the scared side of hopelessness again.. why the hell am I drawn to reading peoples cancer stories, I look for hope in all, but so much misery out of it..time to kick my butt, and push myself up again...
Dear Donna,
Every time I look at your picture I can just see that you are so full of life and that you bring love to those around you. I think you're wise to take deep breathes and pull yourself up when you are ready. I know that tears are necessary at times and when they come let them flow and flow. As I mentioned before one of our daughters has autism and life threatening seizures. We have given her mouth to mouth many times. What I have found over the past 12 years is that we operate in the "things that have to be done mode" most of the time. In other words we do what we have to do. However, there are times when I let it all hang out, my place is in my car, since that is the only place I am ever alone. When I am full of tears and I feel there is no hope I cry out to God (sometimes I even yell at God, like the guys in Psalms) and then I come back to a place of peace. I am praying for you Donna. I know you are a fighter.
Aloha,
Kathleen0 -
You don't look old enough for this, but....Shayenne said:Wow...
I was just on facebook and joining some cancer networks, and boy did some of those stories scare me on there as well now, paralyzed by the fear that alot of people were fine one day and then a couple of months later they were gone because of this damn disease, man I really am getting depressed, and still struggling with getting in the right frame mind of here, is there is any right frame..
With my port, they said they can use it to put the chemo medicine in, and also draw blood, I forgot the right word it's called, some kind of dual lined port..
Taking deep breaths, and really getting anxious.. I was doing good, but now getting on the scared side of hopelessness again.. why the hell am I drawn to reading peoples cancer stories, I look for hope in all, but so much misery out of it..time to kick my butt, and push myself up again...
I remember when I was pregnant. Everyone had advice. And, for some reason, scary stories about their cousin's friend's ex-boyfriends' sister who died in childbirth.
You need to realize that life, itself, is scary at times. But, I FIRMLY believe that having faith that this is just something to get through, not the end of life, is the secret. Instead of getting depressed, get mad! If a person was telling you that you could no longer live, and that he/she was taking control...would you just take it? Of course not. Same with this disease.
My 'right frame' of mind was that I couldn't imagine anything other than going on with my life. Even after I was told 'you have cancer' the second time in a year (first was rectal, next was breast). And laughter. Whether it was a funny movie, or a sitcom (I LOVED watching MASH) it took my mind off what was happening to me.
Now, that's not to say I didn't have my moments. I did. I gave myself a 'pity party' now and again, and it could last up to 24 hours. No more. We cannot control many things that are given to us in life, but we CAN control what we do with what we are given. The choice, everyday, is ours.
Hugs, Kathi0 -
Welcome
Donna,
I'm sorry you have to go through this but you'll find the board very helpful and comforting. Best of luck with your first treatment. Hang in there and think positive thoughts. When I was diagnosed I thought I had 2-5 years. It will be 5 years in September 2009. It is definitely an emotional roller coaster. Take care and keep us posted on your treatments.
Debbie0 -
Thank you so much!sladich said:Welcome
Donna,
I'm sorry you have to go through this but you'll find the board very helpful and comforting. Best of luck with your first treatment. Hang in there and think positive thoughts. When I was diagnosed I thought I had 2-5 years. It will be 5 years in September 2009. It is definitely an emotional roller coaster. Take care and keep us posted on your treatments.
Debbie
You're all so right, I am getting more and more prepared to fight, and just don't want to fail, I want to live so much, and thanks, I try to be the funny one around my friends, I'm usually the go-getter, the energetic one, and you know, I don't want to be someone different..I don't want to be laid up in bed because of chemo all day and night, but if it happens, I guess it happens, I don't want to be a burden, I don't want my kids and hubby taking care of me, I'm supposed to care for them! I'm sorry I have to vent a bit, but I guess I'm going through my angry stage, and need to get it out, because I'm getting pissed off that I'm so bloated and uncomfortable now, though the doctors said that should go down once my swollen liver goes down with the chemo, and I just am afraid of never being able to have good days again where I can enjoy going out and being normal..It's the unknown that's so scary, and I'm sure that once I start the treatments where I'll know more I may even get better, I just want to be better then bad.
You guys are the best, and thanks for being there for my scary times...time for me to just crawl in my little hole for awhile.
Hugsss!
~Donna0 -
You're Not AloneShayenne said:Thank you so much!
You're all so right, I am getting more and more prepared to fight, and just don't want to fail, I want to live so much, and thanks, I try to be the funny one around my friends, I'm usually the go-getter, the energetic one, and you know, I don't want to be someone different..I don't want to be laid up in bed because of chemo all day and night, but if it happens, I guess it happens, I don't want to be a burden, I don't want my kids and hubby taking care of me, I'm supposed to care for them! I'm sorry I have to vent a bit, but I guess I'm going through my angry stage, and need to get it out, because I'm getting pissed off that I'm so bloated and uncomfortable now, though the doctors said that should go down once my swollen liver goes down with the chemo, and I just am afraid of never being able to have good days again where I can enjoy going out and being normal..It's the unknown that's so scary, and I'm sure that once I start the treatments where I'll know more I may even get better, I just want to be better then bad.
You guys are the best, and thanks for being there for my scary times...time for me to just crawl in my little hole for awhile.
Hugsss!
~Donna
Just remember that when you crawl in that hole, God is right there with you. Be sure to talk with him about calming your fears while you're in the hole. I'll keep you in my prayers.
Joy0 -
Me again...Shayenne said:Thank you so much!
You're all so right, I am getting more and more prepared to fight, and just don't want to fail, I want to live so much, and thanks, I try to be the funny one around my friends, I'm usually the go-getter, the energetic one, and you know, I don't want to be someone different..I don't want to be laid up in bed because of chemo all day and night, but if it happens, I guess it happens, I don't want to be a burden, I don't want my kids and hubby taking care of me, I'm supposed to care for them! I'm sorry I have to vent a bit, but I guess I'm going through my angry stage, and need to get it out, because I'm getting pissed off that I'm so bloated and uncomfortable now, though the doctors said that should go down once my swollen liver goes down with the chemo, and I just am afraid of never being able to have good days again where I can enjoy going out and being normal..It's the unknown that's so scary, and I'm sure that once I start the treatments where I'll know more I may even get better, I just want to be better then bad.
You guys are the best, and thanks for being there for my scary times...time for me to just crawl in my little hole for awhile.
Hugsss!
~Donna
Hey Donna... it's me again! What you are going through is totally normal. Hey, this beast has not only struck us, but it's turned our worlds upside down, even when people say, "But hey, you look so healthy and you are doing sooooo well!" Yes, we DO look healthy and we ARE doing well... but what they don't realize is our whole world has been turned upside down. Even when we are given good news and we can breathe a sigh of relief... our "normal" is just not the same as anyone else's. And the only people who really understand that are the people who are going through the same thing. Spouses, parents, friends, etc... they are going through their own fears about hearing of our DX... and no matter how bad those fears are, they still aren't the same as what we go through.
Now, here's where my personal opinion comes in... the reason we can feel this fear, is because we ARE doing so well, we ARE full of energy and fight, and there's no way we are anywhere near rolling over and dying. Whenever we get close to that point, we will no longer have the energy or fight left in us... so as long as you are feeling strong and ready to do battle, you are going to be fine!!
Remember, it was only last week that my radiologist was trying to convince me that I would ALWAYS have cancer, that as a Stage IV patient, the cancer was everywhere in my body, it just hadn't stopped and taken root yet. But because of that, he didn't think doing any more ablations on my lungs would benefit me and he really felt I should go on chemo, after all I was a Stage IV patient. Well, not only did my oncologist NOT agree with him, the CEA test proved him wrong. My CEA level is very low, the spots in my lungs are growing so slowly, it's almost as if they aren't growing at all... and most of them are too small to even determine if they are scar tissue or actual cancer. His response... you have advanced colon cancer that spread to your adrenal gland and to your lung... of course the spots are cancer, they are just small right now.
You know, he may be right... but they haven't grown and the CEA is showing that there is no active cancer areas in the rest of my body right now. So what should I do... go to bed for the next 10 years, waiting for the other shoe to drop?? If he were my only doctor, or my primary oncologist... there's a good chance I would... if I believed him. But I know my body... I feel great... and no one can tell me that I am ready to keel over when I feel as good and strong as I am.
So you have to look at yourself and realize that you are young, you are strong and yes, you have some problems right now, but they are going to get better with the help of the treatment that you are preparing yourself for.
I'm another one who highly recommends having the port!! You do not want to be having IVs put in your arms and the backs of your hands... and then the veins decide to collapse because the chemo is so hard on them. With the port, you don't have to worry about it. I don't recall having much problems with the nurses poking me with the needle into the port... but I agree, get some of the cream the others have suggested. Just ask your oncologist, or the chemo nurse when you go in for your first chemo treatment. It's a cream that you will want to put on the skin around the port a good half hour before you go in, so that it has taken effect. If you wait and put it on when you get there, it won't have numbed the skin enough.
Hugggggs,
Cheryl0 -
wowCherylHutch said:Me again...
Hey Donna... it's me again! What you are going through is totally normal. Hey, this beast has not only struck us, but it's turned our worlds upside down, even when people say, "But hey, you look so healthy and you are doing sooooo well!" Yes, we DO look healthy and we ARE doing well... but what they don't realize is our whole world has been turned upside down. Even when we are given good news and we can breathe a sigh of relief... our "normal" is just not the same as anyone else's. And the only people who really understand that are the people who are going through the same thing. Spouses, parents, friends, etc... they are going through their own fears about hearing of our DX... and no matter how bad those fears are, they still aren't the same as what we go through.
Now, here's where my personal opinion comes in... the reason we can feel this fear, is because we ARE doing so well, we ARE full of energy and fight, and there's no way we are anywhere near rolling over and dying. Whenever we get close to that point, we will no longer have the energy or fight left in us... so as long as you are feeling strong and ready to do battle, you are going to be fine!!
Remember, it was only last week that my radiologist was trying to convince me that I would ALWAYS have cancer, that as a Stage IV patient, the cancer was everywhere in my body, it just hadn't stopped and taken root yet. But because of that, he didn't think doing any more ablations on my lungs would benefit me and he really felt I should go on chemo, after all I was a Stage IV patient. Well, not only did my oncologist NOT agree with him, the CEA test proved him wrong. My CEA level is very low, the spots in my lungs are growing so slowly, it's almost as if they aren't growing at all... and most of them are too small to even determine if they are scar tissue or actual cancer. His response... you have advanced colon cancer that spread to your adrenal gland and to your lung... of course the spots are cancer, they are just small right now.
You know, he may be right... but they haven't grown and the CEA is showing that there is no active cancer areas in the rest of my body right now. So what should I do... go to bed for the next 10 years, waiting for the other shoe to drop?? If he were my only doctor, or my primary oncologist... there's a good chance I would... if I believed him. But I know my body... I feel great... and no one can tell me that I am ready to keel over when I feel as good and strong as I am.
So you have to look at yourself and realize that you are young, you are strong and yes, you have some problems right now, but they are going to get better with the help of the treatment that you are preparing yourself for.
I'm another one who highly recommends having the port!! You do not want to be having IVs put in your arms and the backs of your hands... and then the veins decide to collapse because the chemo is so hard on them. With the port, you don't have to worry about it. I don't recall having much problems with the nurses poking me with the needle into the port... but I agree, get some of the cream the others have suggested. Just ask your oncologist, or the chemo nurse when you go in for your first chemo treatment. It's a cream that you will want to put on the skin around the port a good half hour before you go in, so that it has taken effect. If you wait and put it on when you get there, it won't have numbed the skin enough.
Hugggggs,
Cheryl
wow i think this has to be the best welcome ever! not a place anyone wants to be welcomed to, but thanks to these internet forums and all the support, i have been able to make decisions for my care that i would not have otherwise known about. I love this forum and the people on it. good luck to you in your treatments- my experience with chemo has varied.. with fulfox i found it to be pretty tough knock me on my butt for about 4-5 days then i was ok for the rest of the cycle. I recently got a cycle without the OXY- just the 5FU and i have been great..so definitely OXY has made a difference in how i react. I am so thankful to have gotten that break as OXY literally makes me crazy. I have not have issues with nausea nor have i lost my hair.
Also, If you have not already found it, i would also like to invite you over to the colon club.. another great forum with many stage IV long term survivors to give you hope.. Lots of good advice there on the best doctors/best facilities as well. You can even get yourself and your story in a "colondar". http://www.thecolonclub.com0
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