Chemo in Sept 08
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mina- Sunday every day now there's a thought. I could miss work and say Oh it's MONDAY????? LOL I wish i had an answer for you.
Spring- I don't know if the swings will get better over time or not. I have to admit i "forget" to take it a few times a week and it eases off a little. These poor toddlers are going to be scarred for life if i stay like this.
We had to laugh though because this weekend the two yr old finally noticed my hair coming back and her eyes got big and she finally touched my head and said " Ma-ma you have hair!!! I like it!"
Juli- I think the biggest thing nurses need to do is study HARD on empathy and also like the others said to stress that a lot off cancers are not found on mamograms and if like mine with mixed features mams do not pick up the full extent of the tumor. I was lucky to have had some good nurses that were so supportive. I had one that was a little short with me but that was because i was not taking some of my meds like i should have been. My surgeon told me of one of his patients that got a BC dx 3 months after a clear mamogram so yes they need to know that there are lots of women out there that are in tune with thier bodies and KNOW when something is wrong. I think there are a lot of us that while sihing it wasn't so had a notion that it was going to be BC.
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hi everyone! lili, i found my cancer soon after a normal mammogram. I thought it was a cyst and did nothing about it for months because i thought it couldn't be cancer. just letting women know that a mammogram is far from fool-proof is important. i had some great nurses - friendly, gentle, funny - loved those warm blankets! but, even though a nurse and i went over possible side-effects ad-nauseum, nobody mentioned chemo-brain! thanks wig-store lady! she mentioned it to me when she had problems adding up my purchase. she's a survivor, and she was laughing at herself. i almost grabbed her. "chemo-brain! is that real?" i had thought i was losing it. not only, "where's my car in the parking lot?" but "what does my car look like?" of all the annoying chemo baggage, that was the worst. when i mentioned that i was forgetting things to my docs they gave me that "forty-something" explanation. well, i was forty-something before i started chemo and i didn't have to stand if front of the fridge for five minutes wondering why i'd opened the door! let 'em know lili! thanks, lynn
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Lynn-Thanks for refreshing my brain about chemo-brain. I definitely had chemo-brain. I would try to help my kids with homework and get stuck on simple math equations. It was so frustrating!! I still stand in front of the fridge or in my pantry trying to remember why I was looking in there. Hopefully my forty-something brain cells will regroup soon. In the meantime I'll add that to my discussion with the nursing students.
Li
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Lili - I too had a clear mammogram....but had a 3.0 cm tumor. Self exam is the only way to go. I would say to remind the girls, most cancer patients are so afraid it is very easy to miss understand or forget what the dr says. We ask lots of questions ....not to bug them, but because we don't understand what is happening.
I went to the surgeon today......3 weeks after surgery, still have some stitches and my drain. My wound is healing well but slowly. AGHHHHHH I am so sick of this drain and having to be careful of my arm.....my right arm no less. He told me two more weeks off work. Bummer !!!
Weight gain !!!! Yuck....I lost 18 lbs during chemo and have gained back about 4 lbs......not happy, it is time to get with the program. I was so busy enjoying the things I missed during chemo, I forgot to be careful. Time to diet !!!
Well, the jury is out on rads. The rad onc's are not sure what to do with me. I don't fit any of the standard guidelines. Oh, well....we will decide soon
Trude
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Mina, I don't know, but waking up every day thinking it is Sunday sounds kind of nice to me!!!
Go Li!
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Hi Girls,
We are back and had a wonderful time. We spent 2 days in bangkok and then boarded the Orient Express Train to travel back to Singapore over 3 nights. We were upgraded to a bigger cabin which was wonderful. Sometimes life just works out well, we were upgraded on our last trip too! 5 days is the longest we have spent away from the boys, my little on (12) gets back from a school trip to Australia tonight, so we are looking forward to collecting him from the airport.
We didn't mention cancer once on our trip, various people we met on the train told us about little scares they had had. I could have talked all day about cancer given half a chance, but my husband was so glad to have me "back to normal", it didn't seem appropriate. I know he just wants to move on. It was so good not to be a patient in any way.
Jane, you are funny, does your angle really look like a devil? Great that you are the person you want to be, your therapist is very lucky to have you.
Mina, I hope your oncol comes up with a good follow up plan for you, but thank god the taxol is over.
Trude and Genia, I am so sorry you girls are having a hard time. We have all had our moments of feeling sad and I think we need them. It is part of the grieving process. Remember if you are not copying please do get some professional help and take any med recommeded, it is true, there is no need to be in pain. I really hope you girls feel better soon.
Here are a couple of positive thoughts, "I am a very accomplished person, and I deserve to succeed. I accept success as my divine right.
"I eagerly pull any weeds of negativity from my new garden of joy. Life assists me with this fun task, and it is easy and effortless. I smile and laugh often and feel gratitude for everything that comes my way"
Take care everyone. Singapore Chris x
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Welcome home Chris! Love the thoughts.
"...pulling weeds of negativity from my new garden of joy." I LOVE IT!!!
Spring.
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Hi Spring, where is everyone, have they all moved on with their lives? Can you update your photo, I want to see your hair.
Genia, how are you doing?
Jane, how many more rads to go?
Juli, are you feeling better now, how are your lungs?
Bettysgirl, how is work?
Take care girls,
Singapore Chris x
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Chris - Welcom home! Yay! for having a good time! My lungs are doing much better, thanks!
I have a 3 1/2 hour stress test this morning. I wasn't allowed any caffiene for 24 hours, and no breakfast this morning. Since I don't drink coffee, do I have a headache from no chocolate? I didn't think there was that much caffiene in chocolate. I took 2 tylenol, doubt if that will help. I need excedrin!
I think I will go try the massager on my head...
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Chris, I have been wondering the same thing, our thread here as lost it's Mojo!
I will be going on vacation next week, our first since my BC diagnosis last summer, so I am sure I will be getting pictures.... and will post! I have ditched my wig and am going "topless" :O
lol!!!
Spring...
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I'm here...finished rad #9 today...
My daughter has some icky snotbug for which she's got a doctor's appointment this afternoon.
Woke up to 28 degrees and frost everywhere, now it's a balmy 46 outside!
For me? I'm just keeping quiet and laying low...
Love you,
Robin
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I'm here too. Had an appt with my Onco today. I will be starting rads, herceptin and tamoxifen next week.
Didn't get much encouragement from him today. My path report said my tumor was still 5 cm......and the 5 positive lymph nodes when they took my breast. He's hoping that the herceptin, radiation and tamoxifen will take care of any that's left.....but he says I'm very high risk of having METS. Made my day.....I just wanna bury my head in sand. But I already knew that.....figured that one out a while ago. More in my heart....than in my head.
Anyway.....that's life in the Genia household.
I have my days and nights mixed up. Staying up all night and sleeping a lot during the day. Can't get my brain to shut down at night. Had a major meltdown last night....just because I dropped my glass in the floor. Doesn't take much to trigger those emotions anymore.
Love you all......
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Ah Genia, don't count yourslef out yet. It's up to God.
I have a friend who was Dx'd in her 40s with a huge tumor, and 17/17 lymph nodes. That was over 2.5 years ago. She's still here and kicking.
Put it in your mind you will laaaaassssttt. They are coming up with new things every day. In 2 years, they'll know more.
Now, about bone mets. There is recent research that shows Zometa (2x yearly for 2-3 years) helps strengthen bones and get this, PREVENTS bone mets. I am having a bone scan again, and if I am still "boarderline" (my GP wanted me to take Fosomax years ago) then my ONC will put me on the Zometa infustions. You may want to ask about it...
Loving you girl!!!! Still lifting up the prayers....
Your girlfriend, Springie.
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Genia,
Maybe this is a bad time for survivor stories, when you probably want to kick over/shoot your TV, but I did meet a 10 or 15 year year survivor at my son's office who had a huge breast cancer tumor unknowingly ...she didn't do breast checks regularly.:( and my memory is mush...but she was very happy to tell me her story to encourage me...so I'll tell youpart of her story too.
AND
.I'm sending you a hug from both of us...she gave me such a warm soft hug...I wanted to stay on her chest forever.
So now that my leg is bigger today than it was yesterday, my doctor is ordering Lasix 40 mgm po....take it 3 days only, then back to the other mild diuretic, I take to keep the fluid normalized in my inner ear.
hahahahahahahahahhahhaahhahahha (Mina's maniacal laugh) It turns out one of my friends on THIS board mentioned Lasix either this week or last week....hahahahahahhahahahaha...more crazy laughter..
Doc's arrrrrg!.
luv and hugs
MIna
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Genia - My tumor was 5.5CM after AC, and 2 of my lymph nodes were positive. I know from the oncs perspective that puts us at higher risk, but here's the deal. I've seen people on this site with little tumors, and no nodes, and they get mets. I've seen people with large tumors and nodes, and they are years out now with no mets. So there are people all over the place. We just can't worry about that. My onc has never said those words yours did, and I'm not sure what your onc expected you to do with that information. Let's just get the agressive treatment (which we are), and leave the rest to God. We don't know it will come back, and as Spring said, they are coming up with new things all the time.
You know, so many people think they have forever, and something bad happens. None of us know when our time will come to leave this place, but it is for sure to happen to all of us. We are blessed that we had a "wake up call" to cherish every day. Not sweat the small stuff. There is a good chance that it won't come back. Let's hold onto that thought, and fight the fight!
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Don't know what I would do without my voice of reason on here......thanks ladies.
I guess we all live until our time is up.....just very hard not to worry.
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Hi Girls,
Genia, you are going to be alright, we all are. We have done everything we can to get rid of those nasty cancer cells and I am sure they have taking a real beating. I am just off to school with the boys so will write more later. Try not to focus on what you uncaring oncol said, like brandonmom said, how was that supposed to help!
Bye for now, Singapore Chris
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Genia, My onc also said to me she thought I was at a high risk of reoccurrance given I had the vascular invasion and a large tumor. It stings when you hear that crap! I honestly don't know why they don't keep these thoughts to themselves. It is a bit maddening, honestly. They need to spend a day on the table and out of the white coat. Be in our shoes for a bit !!!
However, maybe even more bc of what she said, I do feel very motivated to do all I can do to keep healthy. Anti-Cancer a New Way of Life book is so good. I am going to send you a copy. It is full of hope and actions of what we can do beyond the medical treatmetns. We can do these things, pray, and the rest is up to God.
I agree also with what BrandonMom said. There are all sorts of cancers, and they all act different ways.
Springie.
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Genia, Book being sent to you!!!
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Thanks Bev and Chris......
And thanks for the book in advance Bev.......question.....what's the difference between vascular invasion and the cancer being in the lymph nodes?
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genia- i know it is so hard to think with a voice of reason when it's YOU....that being said you have to know that there are a lot of survivor stories out there like the others said. I've seem varying stories out of small or large. The bottom line is not a one of us is guaranteed tomorrow. Heck I could stroke out tongiht! We have to look at the day to day life and try to find some value in each say..(and i am preaching to myself too...HUGS to you. Keep your head up.
Chris- Work today was HORRIBLE!!! All three of us were on her crap list, she was barking orders and smart remarks all day. We have had computer viruses and you can hardly so anything without the screen taking a minuite to save it...she told us we were spoiled babies that needed to be thankful we had computers or we would be doing it all by hand in writ books again....I started to tell her we are all going back to some of the old ways to look info up because it's quicker than waiting on the computer to so it....anyway we were ready to have a party when five finally came.
Kids are a little on the fussy side today too. We have had sooo much rain they haven't been out and it shows.
Mina- I hope the lasix helps and Juli I hope you keep getting stronger.
HUGS to all
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Hi, All. 4Four4Four4Four4 more rads to go. I saw rads onc today. The open sore under my arm is becoming infected, so she gave me some Keflex. She told me to expect it to get worse before it gets better. She offered me something for the pain. It's a good thing I'm an honest addict. I've had more narcotics offered to me in the last 7 months than I could want. It's in my history...don't they understand how dangerous it is to offer someone who has a history of abusing narcotics pain meds? Don't they understand how easily an addict will manipulate something like that? Whatever happened to "First, do no harm?" I understand that no one deserves to be in pain. When I have needed narcotics, I have taken them. It just seems to me that these docs are way too easy-going when it comes to this. It really scares me. I'm lucky that I have a great support group and a solid foundation in AA, but what happens to people who have just kicked the habit? It would suck to survive breast cancer and die from a drug overdose. Sorry, I'll get off my soapbox. I guess I'm a little sensitive in this area. A woman on another thread I'm on just lost a cousin to alcohol
Genia - My onc told me after my mast that I had a 68% chance of it coming back. My rads onc told me I had "late stage cancer." It sucks to hear that. It's scary to think about it. But, it's one thing to prudently plan ahead, it's another to let it consume our lives. I bought the little folder "What my family needs to know," and I have begun filling that out. My family SHOULD know what to do if I'm not here. Even if it's only something they should know if I'm just in the hospital. My husband doesn't have a clue what bills get paid when, what gets paid automatically and what needs to have a check sent. I've also gone to the web site "mywonderfullife" where I can fill out important stuff about what I would want done at the end. I don't plan on needing to use any of this soon, but it's good to have in place. My husband and I have had wills in place since our kids were born because you never know. We didn't want something to happen to us and then have the decision of what happened to our kids left up to the state.
What I'm getting at is: It wasn't raining when Noah built the arc. He planned ahead. That is good. On the other hand, I don't plan on spending every day with a gray cloud hanging over my head. If it's going to come back, it's going to come back. I've done everything I can do to stop that from happening. But, I'm not going to live like it has already come back. There are women on the boards here who have been living with mets for years. It will probably always be in the back of my mind that this might come back, but I'm not going to let that keep me from enjoying every day I can.
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Chris - I forgot to say - My angel is red, but he has not sprouted horns yet.
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Genia,
I also had vascular invasion. Vascular invasion is invasion of the veins, so the blood system. Positive nodes is kind of invasion of the lymph system. Both go through out the body. So our hope is that the systemic chemo that we received, wiped out any cells that may be floating in the blood system.
My onc always says something that helps keep me grounded, he says you can't change where you started, so don't focus on that. Focus on where you finish. Just like Spring said, let's get as healthy as possible - our immune systems can do so much, and go with the most agressive therapy our bodies can stand. I know you have had difficulties with treatment, but almost all of the problems have been because your immune system is so darned pissed off, it is going after everything (including you for putting that tape on it
).Statistics are by their nature outdated. They are also almost meaningless. IFor an individual, if it comes back, it comes back 100%, it doesn't come back 57%. So whether you were deemed "low risk" or "high risk", and it comes back or doesn't, the result is the same.
For my son, his type of cancer was unique, and there was a higher likelihood he wouldn't survive the first 2 weeks after diagnosis. Well, he did. Given that he made that hurdle, there was higher likelihood, that it wouldn't come back. Well, it did. Given that and the fact that he didn't have a sibling to be his bone marrow donor, the odds were that he wouldn't make it. Well, he did!! So, I'm all for being in the underdog!
I think I may have told you that I met a woman that had ILC 10 years ago. She was told she would only live for 2 years given her "advanced disease". She was one of those that had a bone marrow transplant which was later discounted as a recommended treatment. OK, she was told that 10 years ago, and I just met her this past November. She is still BC free!
You are alive! LIve your life. Leave the bean counters to count their beans!
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Beverly - Where are you going on your vacation? When is your bone scan?
Genia - Hugs g/f! Wish I could take all your worries away.
Jane - oweeee! Hope your sore heals fast!
Mina - you crack me up...even when I can't figure out what you are talkin' about!
Robin - how is your daughter? Did she get an antibiotic?
Lisa - Thanks, I feel so much better. We have a virus on one of our computers too.
Stress test went ok. Took 3 1/2 hours just like they said. I didn't get any indication that anything looked bad. I have to be hooked up to a heart monitor tomorrow for 24 hours. They would have done it today, but then it would have interfered with radiation, so I have to go after tomorrow's rads.
Hugs to all!
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Hi Girls,
Jane I really liked your post, you are a very sensible lady, keep up the good work. Hope your wound heals real fast.
Brandonmum, you have an amazing attitude, it's lovely to hear that your family are really good at beating the odds. Enjoy every day.
Bettysgirl, hang in there with the work nightmare, everyone always gets whats coming to them, I am sure the whole place will change for the better any day now
Springie, when do you leave and like Juli said where are you going? I am sure you will have a wonderful time, and we will miss you here.
Mina, glad you have been collecting extra hugs, I am sure they make you feel so much better.
Juli, hope all goes well with the heart test. How are you coping with rads?
Genia, What do you enjoy doing? Make a list and let us all know what is on it, then set about doing something good every day. Do you like watching DVD's, and what kind, as I have loads of movies I will probably never watch again, maybe I can send them to you. I think a vision board might help you. Private message me your email address and I will send you my notes. A lovely vision of all the things you want in your future will make you feel better and you will have something good to focus on. Do you think it might help you to get some counselling, as you will learn some strategies for coping with an uncertain future, would it be covered by your medical insurance?
If anyone else wants my notes on how to create a vision board, please let me have your email address and I will send them to you.
Take care girls, Singapore Chris
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Genia, like Brandonmom said, cancer can spread through lymph or blood. Vascular invasion means when they took the tumor and looked at it all, they found cancer had invaded a blood vessel I guess. She was NOT happy about this. But then again, I had rads, I had chemo. I am working on it!!! I really think our immune systems were designed to clobber this sucker, so we just have to help it heal and there is so much to do with eating foods, exercise, and serenity. I hope you like the book. I found I could not put it down! What a story he tells of his own experience, and, how it was like for a medical Doctor to now be the patient. You will really feel it hit you when you read that part. (These ONCs we have, some of them, should read that part!!! IMHO!!!)
Janie-pooh, I also had that hole deal in my armpit at the end of rads. It wasn't infected, but he had me put peroxide on it to keep it dry and non infected, and the peroxide made it peel peel peel!!! Jane, I would say about a week from now, you will notice some healing already!!! It is amazing how fast we heal. Just you watch and be amazed at how well you are designed!!! It makes a believer out of you.
Jules, you be one busy woman!! Glad your stress test came back okay!
Chris, oh yes, I watched "The Secret" and am a visual person anyway. I want to create a Vision Board. Would you share, with me anyway, how to start this?? I don't think my vision board would be full of "stuff", but of family and friends. I want to put a picture of Genia up there smiling and happy, surrounded by abundance of everything she needs and good health!! And I have 2 friends just laid off, I want to put images of them up there where their lifes are in harmony with their inner spirits, and they are happy. I want a vision of the future where my girls have children and we are all still in touch and helping each other. I could go on!!! Help me to get started!!!
BEACH!!! We are going to the Outer Banks of North Carolina. We leave tomorrow! I am taking the laptop with me!! So I will be in touch. My 19 year old is driving home from college tonight to join us for the weekend. My 16 year old (they are both gorgeous girls) is bringing her friend. So we will have a wonderful time. I am seeing it in my mind! It is to be the 70's here today. I hope the weather holds!
This is our first vacation since diagnosis last year July 10. I am so excited and nearly stupidly happy!
Spring.
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TGIF LADIES!!!!!!! i couldn't take another work day this week!!!!! Have a great weekend ladies!
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Let's all get high......take a look at this!!!
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Hope I didn't offend anyone.....not promoting smoking pot.....but I would eat dog poo if it would make my cancer go away and not come back.
Thanks for the encouraging words. I'm sorry I get so down and do my moaning and groaning on here....but I know you all understand. I guess I have bad days....just like anyone else. Yesterday was just one of them.
love all of you.....
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