Chemo in Sept 08
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Can we come up with a target date for meeting in New York? Robin is going to be there
August 5-7 Should we plan to meet during that time, before, after?
I want to start looking for hotel deals!
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Anytime in August is good for me.
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Hey ladies.
My friend, Dave, died this morning of pancreatic cancer. Thank God that it was fast.
I am so sick of cancer, being reminded that I've had cancer, reading about cancer, close friends dying of cancer, educating others about cancer, eating as if I've still got cancer...I'm just so DONE with it all. I skim over the other threads, and so many have this sickening, common thread of "When will it be my time to start posting on the stage IV threads?" and then reading all of the bitching that goes on because someone who's 'just a piddly stage I, II, or III can't POSSIBLY understand what it's LIKE to be a STAGE IV!" No...I've no CLUE what it's like to be terminal, but I sure as hell have had some wonderful FRIENDS ripped from my life BECAUSE they were Stage IV. Where is the support? Is it just me, or has bc.org become clique-y?
I am feeling incredibly fortunate that looking at my port doesn't remind me that I have had cancer treatment. I feel the same way about my scar. I'm blessed that my oncologist doesn't feel that I need to be sent for numerous scans...and that's because I'm only a Stage I, with no nodes. I'm weirdly healthy. Chemo didn't make me sick at all. Rads sucked, but I healed up in a flash.
I guess that my outlook has always been "It's just cancer." It's not like I've been hit by a bus, or stuck my tongue in a light socket...Either I'll beat cancer, or I won't. Either way, I know that I'm gonna be going Home. Where's the bad ending with that? LOL
Anyway...I'm thinking that I'm going to back away from bc.org for a while, and that's ok...I've got all of you on Facebook...I'll check in every so often.
Love you all...
Robin
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Robin, same here, I have been overloaded with cancer crap. My SIL just had a recurrence in same breast and is now having a BLM.
Aug 5-8 is a Yoga Retreat at the NC beach for me, so i can't make it then, just FYI. We do go to NJ every year in August. We might go that week after. so if you go the days after, that might work!!
I will be coming in from NJ, just south. Can't wait to meet you ladiessssssssss!!!!
Chris, I can't believe there is a type of cancer that is not seen by MRI!!! good grief! MRI was the only thing that saw mine, lit up like a light bulb. I guess there are all different considerations. Glad you like your new onc!
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H Sprint,
I am not sure what I said last time, but I must have said something wrong, as mine was seen on the mri, sorry to be confusing.
Time to walk the dog, cold weather will bring a fresh feeling to my checks.
Have a good weekend girls.
Love Singapore Chris x
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Yes, the MRI rules. Glad to hear this is still the case!
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Robin hon I know exactly what you are talking about. I think unfortunately these boards HAVE become cliquey. And it's a shame that it has gotten to that point. I made the mistake of posting on a stage IV thread once and offered hugs and prayers for them and was QUICKLY told that they didn't NEED nor WANT my pity. I wasn't pitying them....I was sincere. I also told them that all of us were just one scan away from being where they were now. And it's true......none of us have a guarantee that our cancer won't return and kill us. One lady spoke up and pretty much mocked what I said about being a scan away........she told me I had NO IDEA how they felt. I'm sorry but that is NOT true. I live every single day as i know some of you do also........with the thought in the back of my mind........that it could come back. There have been so many times I've wanted to walk away from here for that very reason, but I didn't because of all of you.
I can tell you one thing.......IF I'm EVER stage 4.......I will NOT post on any of their threads with them. I'm sorry, but if it's not ok for me to be there now.......I won't be there then either. Just my opinion.
Hugs Robin and I'm sorry you lost your friend.....but ya know.....he's at peace now. Lots to be said about that.
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genia- i hear ya- maybe my thought process would change if i was a four but i could never chide someone for being supportive...
It's frustrating to me that every pain bring about great fear- i had chostochondritis quite a few years ago- whih is an inflammation of the chostal tissues in your breatbone and ribs...I THINK i have it again but the pain is much worse this time. Advil does lessen it so i guess that's the good part. However if it stays this bad I will have to schedule my onco visit earlier than Mar..please pray with me girls that this is yet again JUST chostochondritis!
I know the cruise is going to be geat and that you will have a great time girls! Take lots of pics and post them here or FB!!
Robin- see ya on FB- take care of those tired feet after Valentines!!
Love you all and hope you have a SUPER Valentine's day.
BG/Lisa
PS we had the prettiest snow. almost 5 inches...soft and pretty and gone quick but it was so pretty to watch.
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Lisa - so sorry to hear about your pain. I have never heard of chostochondritis. I will have to google that.
Genia - I hear ya too. When I look on the Actives list, I never pay attention to what stage they are from. Guess I will now.
Have a great Valentine's Day! Big hugs and kisses to y'all!
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Hi Girls,
Happy Valentines Day to you all !
Please ladies, don't get sucked under by some of the negative posts on other boards, the girls that seem the rudest and agressive need our understanding, but maybe not our comments. If you don't like what you read, don't go there again. Stay here with us and all the positive engergy we have created. Lisa we also had some lovely soft snow today, we have just walked the dog and it was wonderful.
Take Care, Singapore Chris x
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Chris, you are right, Positive energy is a good thing to try and surround ourselves with, and to generate!
Genia, I can't believe people acted that way to you!!!. I'm sorry, there is no excuse to be rude to others, no matter what your stage is or your prognosis is. Rude is rude, and it's wrong.
We love you!!!
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Lisa let's hope that's ALL it is......none of us need or want anything else. But I do understand how you feel.....especially with all the pain I'm having now.....and it doesn't seem to be getting any better even after being off the AI for 3 weeks now. I know I had a PET scan a few months ago....but still it doesn't keep me from wondering and worrying.
That being said......thanks Chris for reminding me I don't need to venture too far away from home......meaning here. I just know that I would NOT mind if someone was there to offer me support......REGARDLESS of what stage they were. I think some of them are very bitter towards those who don't have METS. Sad but true.....
Here is where I belong......regardless of what ever happens as far as remission, progression or what have you. It's my safety zone. And another thread that I started when I was first diagnosed. The power of prayer. Those ladies are wonderful there too. Guess you don't know you have crawled into a rattlesnake pit until you get bitten.
Hope you all had a nice Valentines Day. Mine was uneventful. Hubby made me a chocolate cake last night and made a heart shape on it out of cherries. I thought that was sweet...
love you all
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Genia - that was very sweet of your hubby!
my b/f and I went out to dinner with my mom and stepdad. It was really yummy! This morning my b/f gave me a bouquet of light purple roses. When I opened my card from him, I busted out laughing. He bought me the same card I bought for him! Too funny!
hugs
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Hi Girls,
Juli, how funny, you must be on the same wavelength!
Genia, hang in there/here. Did you ever do the vision board? Some of my clients have told me that whenever they feel worried and stressed, they look at their vision board and it makes them feel calm and grounded. If you haven't done it, maybe do it with a friend and fill it with all the wonderful things you do have in your life and maybe the things you want. A picture of that chocolate cake with the cherry heart sounds like it belongs there.
Spring, sorry for calling you Sprint, since I had my cateracts done, my close up vision is not as good, I have to be at exactly the right distance from the screen and if I am not, my topos go wild.
We had a good valentines dinner in one of our old favourite restaurants and all I wanted this year was tulips!
Have a good week ladies. Love Singapore Chris x
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Juli - too funny. I didn't even get a card.
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Jane - Did you bop him over the head with one???
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I made sure I had a card ahead of time, along with some love-note-filled chocolate covered fortune cookies and he watched me lovingly put stickers on the outside of his card the other night. I gave him his card bright and early Sunday morning before I went to Sunday School. His excuse today....he put all of his cash in the offering plate in church on Sunday! Like CVS doesn't take our debit card? In the grand scheme of things, it's really no big deal, I guess...at least in his eyes, but it still stings a little.
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Snowing again here! For me, it is still magical! I head to the oncologist on Friday. I was supposed to go early January, but I needed a month off from the docs. I'm interested to hear their thoughts on my thyroid. I've been amazed how many of my friends take synthroid. Had no idea it was so common. Hope this helps my flippy heart as well.
I'm almost sure he is going to want to do blood tests. I'm imagining his face when I ask him to write the order for the blood test and I'll have the endocrine doc run the test on Monday. As he said, I only have one arm for blood draws now, so should try to minimize the times I get stuck. Since I am 100% positive the endocrine doc is going to want to do blood tests, they can combine on that one draw.
Seems like we are at a low point for people passing. There have been several women from this site that I was close to, as well as a couple of the pediatric patients I'm close with. You know, my son was originally diagnosed over 10 years ago. I really had thought we would have better treatment available by now..
Genia, I know what you mean about being a scan away. I feel the same way at times.
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Chris, Spring or Sprint, whatever! Either works for me! I have my vision board in my office, and I often look at it while doing Yoga, and I do feel good about it.
Jane, DH is a poop head! He could have made you a home made card. I hear you, that would sting. I told my DH the day before, "I got you a card" so he would know and it was a reminder. He had already gotten me one, but I didn't want to take any chances. ha!
Juli, DH and I did not get the same card, but it was the same sentiment! You win on identacle cards though! LOL!!
Colleen, let us know what happens after the ONC. I have my "4 month" appt mid March. Last appt I went to was not fun, it was like she reminded me I have a life threatening condition. I hate that - walking out of there all scared and fearful. I work so hard to be healthy and positive, I am thinking of a new onc that does not bring me down. We'll see how the next one goes....
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I re-scheduled my cardiologist appt from 2/23 to 3/16. I decided no doctor appts till March.
hugs
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Spring, you really do need to get a more positive oncologist. I have to admit, I really like my oncologist. I always have lots of questions and he always answer them all. I'm pretty sure they book two appts when I'm coming because they know I'll take a long time. Even when I don't come in with questions, for some reason, I always think of a few while I'm there
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Hi Girls,
I'm with you girls, a good oncol and one that you like and makes you feel good is a must. We do not want to walk out of the office feeling bad. We should be walking out feeling good, especially when we don't have cancer!
I didn't bother with a Valentines card this year for my husband as I know he doesn't really care about them and I would probably be setting myself up for a dissapointment if I didn't get one and he did. This is the first year in 22years I haven't given him one. I didn't get one either and neither of us cared or even mentioned it. I know he loves me, that is all that matters. Jane your husband probably feels the same. Although he must have ben on another planet if he saw you putting little hearts on his.
Have a good day girls. Love Singapore Chris x
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You girls are right. This next appt, if I walk out of there feeling low/down/scared, that's it. I have the name of another one at Duke, and if this next appt is not good, I'll try that next. Thanks for the push!!! I needed that.
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Tomorrow I have an appt with yet another Onco and I've never left the treatment center. This will make my third one. My original one that I loved so well......left and moved to NYC. The one that replaced him had come out of retirement to help out because they didn't have a Dr. So he left about a month ago. I will see the one that replaced HIM.....tomorrow. I think I'm going to request that he put me on the 10mg of Tamox. Hopefully I will do ok on that and eventually the bone pain will diminish!
I'm finding myself more and more depressed lately. The pain is just getting so unbearable and it's wearing me down. I'm not sleeping much because it hurts to lay in my bed for a very long period of time. I can barely raise myself up to get out of bed......it's just getting old!
Jane....I'm sorry your hubby didn't get you anything for V-day. Mine didn't either....altho he made me the sweet cake and a big pot of chilli.
love you girls.......
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Genia, I think it was Jules, but somebody up above mentioned Fibermilaga. I think you need to get looked at for that. The constant pain. Ask your ONC tomorrow if the AI should be like "out of your system" at 6 weeks, I think this is what I heard. If so, and you are still hurtin' by then, I think you need to check out this Fibromyalgia
Here is what I see on wikipedia: http://en.wikipedia.org/wiki/Fibromyalgia
Fibromyalgia is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure.[1] Fibromyalgia symptoms are not restricted to pain, leading to the use of the alternative term fibromyalgia syndrome for the condition. Other core symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients[2] may also report difficulty with swallowing,[3] bowel and bladder abnormalities,[4] numbness and tingling,[5] and cognitive dysfunction.[6] Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as posttraumatic stress disorder.[7][8] Not all people with fibromyalgia experience all associated symptoms.[9] Fibromyalgia is estimated to affect 2-4% of the population,[7] with a female to male incidence ratio of approximately 9:1.[10]
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Genia, just to echo what Spring said, maybe it isn't the tamox. I was reading some posts on this board last night, and found one that was almost exactly your situation. She was having lots of pain and blaming the tamox. She wanted to stop. Her onc told her it wasn't her tamox, I think it was that she was thrown in menopause. Got me to thinking that your may not have pain from your tamox. In my case, the pain may not be from the Femara, but may be related to my thyroid. It is easy to blame the hormone meds I think, because we start taking those at the time that we are otherwise rebuilding, so they seem like a likely suspect.
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Beverly.....I'm beginning to think it is Fibromyalgia. The pain is too wide spread for it to be anything else. I would think if it were arthritis it would be isolated to one or two area's unless it's RA and then it could be all over my body. I will talk to him about it tomorrow. I hope if he can't figure it out, he will at least send me to a Rheumatologist. This pain is just horrific.....and I'm not exaggerating at all. I've had 3 babies and I would MUCH rather go through that again than live every day like this.
Colleen....I'm not taking Tamox right now. I was taking Aromasin....but haven't taken it in over 3 weeks. So I don't know....
I think I just need a new body......lol.........would be nice!
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Genia, it would not surprise me if the Chemo, Rads, and drugs have thrown you into Fibermilaga. I don't think they know what causes it, generally, but if you have it, we will KNOW what caused yours! Yes, and the pain all over, and not letting up, to me, sounds like Fibermilaga. I have a friend who has it. If you can get a propper diagnosis, then they can start figuring out how to treat it.
Let us know what the ONC says after you see him tomorrow!!!!
Hi Colleen, I take Tamox and there is no body pain at least for me. I get hot flashes, but they seem to be lightning up some, and the vaginal dryness and atrophy is my main complaint. Things "down there" are just not the same AT ALL!!! But this is livable. What Genia is going through is NOT!!!!
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Hi Girls,
Genia, I was also beginning to think that your pain must be from something else. It is good that this has all come up just before your oncol appointment. Make sure you write a list of everything you need to ask before you get there, as most of us go blank when we are actually there. I am sure that you will be luck and that this third oncol will be a really good one, who will refer you to the right place to stop this awful pain you are in.
I have been on Aromasin for 5 months now and I only get the usual joint pain when I get up from sitting for a while. One of my heels does still really hurt most days, and this also came on when I was on tamox, but I am sure it is un connected and just bad timing. when I wear my othotics in my shoes I do feel better, but they don't fit in many of my shoes.
I am looking forward to popping over to England tomorrow to visit my mum, it's good to be so close.
Take Care Girls, Singapore Chris x
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Sorry, I just meant to agree that I'm not sure it is the hormone med that is causing Genia's pain. I shouldn't have said Tamox, as I wasn't trying to be specific.
What do you think about the aspirin study? I don't see how it could hurt in any event.
Genia, ask your onc what he thinks!
Women who used aspirin daily reduced their risk of breast cancer by nearly 30%. But when the researchers looked at what types of tumors were affected, aspirin only seemed to protect against tumors that expressed the hormones estrogen or progestin (or both). These types of tumors tend to have a better prognosis than hormone-receptor negative tumors because they respond to hormonal treatments like tamoxifen.
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