August 2010...anyone starting chemo besides me?!
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Evening all!
Mammos: I already had a mammo on the affected breast (I had lumpectomy). The rad onco wanted it before I started rads. Obviously it was a little uncomfortable as the surgical area is slightly tender, but it was bearable. I have been told I will have mammos/sono and MRI yearly from this point on. They will be staggered so that I am receiving testing every six months.
Okay, so I went for my presurgical testing today (having uterine polyps removed on December 29) and right now I am fighting to quell the panic that I feel. Seems like there have been some "changes in my EKG" since the one I had before breast surgery, so I have to go to my medical doctor for clearance. My brain tells me that it is probably nothing, just a scam to get a little business for the family physician..but my heart is beginning to panic, thinking there is damage to my heart from all the treatment I received. And the thing that really bothers me is that the onco specifically did not prescribe Adriamycin for me because I have a history of rheumatoid arthritis and therefore I am at high risk for heart damage. So, I had Taxotere instead. Could this have damaged my heart? I am really pissed right now, because it seems I can't catch a break here. Does everything have to be difficult? Now I have to take at least 2 unpaid hours off work tomorrow and waste an hours worth of gas. Then I get to pray that my heart is okay and that the surgery reveals benign polyps and not uterine or endometrial cancer... AARRGGGH! I am sooo trying to be calm here...not being too successful. Sorry for the rant.
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sptmm62 - I'm sorry you have to go through more crap before your surgery. Praying that you get a clean bill of health tomorrow. "Changes" is not descriptive - it could mean absolutely nothing. And like you said, you didn't get the drugs that are likely to affect your heart. So, try to put your mind at ease.
Hair - My peach fuzz is starting to grow a little bit, but only on top and in the back - almost nothing on the sides. And I still have to look really closely in good light to see it at all because it is colorless. Trying to be patient on this.
I just had a huge laugh at this blog post about a Christmas Pagent gone terribly wrong. It's called "The Year Kenny Loggins Ruined Christmas". And I was laughing so hard, I couldn't see through the tears in my eyes.
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I'm laughing here about the hair "petting". My 10 year old daughter does that all the time too.
Cal and Liz: Yes, I had a BMX, but they leave a thin layer of breast tissue behind after a bmx and since my tumor was close to the skin and there was not a clean margin after surgery, I can get bc again ... I guess anyone can. I will have either the mammos or MRIs. Thing is, I was getting false negative mammos. Now, that should not happen since I don't have enough tissue to make it difficult to spot anything. But my RO hasn't decided yet between the MRI and the mammos.
Sptmm: I'm sorry things are so tough. I will keep you in my prayers and hope it is nothing.
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Hi all, just wanted to check in. Sorry I haven't been more active here. Life keeps me pretty busy but I've been lurking in the background.
I shared these on the hair thread but thought I'd post them here too. I don't know about you but I love post chemo hair growth pictures. These are from the last day of chemo, 5 weeks and today (7 1/2 weeks). So far I've held onto my eyebrows (they've thinned a bit) and all of my eyelashes except for the ones on the bottom of my right eye (weird!) but they're starting to come back now. I'd love to see your hair pics too!
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KatherineNaomi Wow, your pictures are fantastic. Congratulations on the quick hair regrowth. I'm 5 weeks out and I still look like the photo that you took on your last day of chemo without most of the eyebrows
. I'm looking forward to having hair again although, I keep reminding myself that it's not the most important thing. So, my hope for 2011 that my family will be blessed with good health and that's my wish for all of you as well. I hope that everyone has a peaceful holiday season.0 -
Sptmm: I would not get too concerned about the changes on the EKG. Don't get concerned about anything until you have all the information necessary. Just go to the GP and relax until you know more. I have said it before and am going to say it again: I don't know about you but I suck at predicting the future. Just relax. As for the polyps, those are so common after a certain age. Again, wait until they come out. Stress and upset about what could very well turn out to be absolutely nothing is so unhealthy. Stress and worry is not going to fix anything anyway. I encourage you to busy your mind with other things. Get the 17 yr old who wants to pet your head to play cards or board games with you. Just distract yourself and chant if you feel comfortable doing so as a segue into meditation. Please relax. I don't think taxotere can harm the heart or at least that is not one of the definitive side effects. Adriamyacin is definitely the heart harrasser. I wish you peace during this tumultuous time.
Also, in the unlikely event there is any change in your heart, don't forget the heart is a muscle. Muscle has the best memory and with workouts and healthy eating you can do everything possible to build up your heart strength again. Don't panic.
Calamtykel: get away from the radiation. Go to the new place where they have a better, healthier technology. I was bitching up a storm when, at 38 years old with no family history of bc, my gyn wanted me to get a mammo. I did not go. She called me and was like why were you a no-show, you need to get this done blah blah. Still I did not want to go because my feeling is it the chicken or the damn egg when it comes to this mammo/radiation exposure crap. Another gyn from the practice called me and was telling me to get to the mammo blah blah so finally off I went. It showed shadows and sure enough, 2 years later, those shadows would become bc. I still don't like mammos, however. I figured I did not need one good boob because given my luck the cells would have said 'hey, there is an empty hotel over there on the right and it looks empty...let's set up camp!' and that is the voice of my bc cells! I just did not want to have to go through all the "investigating" of every freakin' shadow until the day I die. I also figured I wanted a matching set! A matching set of cut up boobs no less!
Everyone: Please don't misconstrue my comments...this was my choice and my thinking on this matter. It was not an easy choice but I did not want to spend the rest of my life in and out of the medical industrial complex being poked and prodded...for me that was a fate worse than losing both breasts. They also discussed the merits of a lumpectomy with me which I thought was completely ludicrous. Coming from the financial industry, and knowing what I know about bc etc..., my gut told me to, at the very least, get an mx as a lumpectomy seemed to be a way of annuitizing income! Seriously...I am sorry...I know that sounds horrible but I think a lumpectomy is a loosely-cloaked comeback track. Again, though, for all of you who did have lumpectomies, that was the right choice for you. I chose the most radical option so I could have the greatest possible chances of no recurrence and getting the heck out of the doctor circuit. To me, losing both was a way out of the medical world...god willing!
Ann97: it is funny that you now mention margins. I did not think there was any margins to speak of with a bmx/mx but now, after the meeting with the rad onc, she mentioned that my margins were good and that it was further evidence I did not need rads. Now I understand why you have to have mammos but I would damn scared as well about the squishing causing a rupture to the implant. Geez, louise...our worries never stop, do they?! I will flip my lid if they start telling me I have to go for mammos....my next question will be who is going to pay for the replacement of the ruptured implant. What I don't understand also is if we just got bmxs and did not get any implants it would be impossible to mammo. Why do they treat implants as an opp to mammo especially when the chances of being able to accurately mammo the chest wall via mammo with an implant seems kind of impossible. All questions to ask, I guess.
Well, one of my evening naps has caused me some excess energy this evening..yay! It feels good to be getting some stuff done. Goodnight all-
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Thanks everyone for your reassurances. My brain knows that it is probably nothing, but my heart is teetering on the edge. I have calmed down a lot since last night. Mostly now I am angry that I have to go out of my way (drive one hour roundtrip to the doctor) and lose money (wages and gas) for nothing. But thanks for your reassurances!
On MX: Honestly Lizzy, I had a lumpectomy because I could not afford to be out of work for three or more weeks. Otherwise, I would have had a bilateral just like you did. I am comfortable with my choice and believe that in the long term the risk of recurrence is the same either way. But there is no reason to apologize for your beliefs. We can all appreciate each other's opinions without being offended. It actually helps to hear other's point of view when making decisions.
Well, my appt is at 11...wish me luck everyone!
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Katherine, you looks so cute even without hair.
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Lizzy - I think everyone has to do what they themselves can live with moving ahead. I was happy when they took about half my breast tissue in the unaffected side for a reduction and no cancer was found. For me, I wanted to keep one breast since I was not having any reconstruction and I wanted an "anchor" for my bra!
I totally understand those who opt for lumpectomy though. But knowing my paranoid self, I didn't want to get pulled back in there if they found unclean margins. Fortunately they did - it was fairly self contained. I do believe that a lumpectomy with rads recurrance is 8-14% and a mastectomy is 3-5% recurrance. I remember these figures being written down for me by my breast surgeon so there is really very little difference between them. In 1985, I believe, they determined this, so it's been a pretty long time to study it.
I have a friend who had a lumpectomy with chemo and rads. When they did a reduction they found cancer in the other side. The BS told her she should have a bilateral mast but instead she did nothing and is still doing nothing. I guess they are hoping that the chemo got it all, although she only had four treatments. I'm worried for her and I don't understand how she can just "let it go". She said she could not deal with a bmx, so she just did nothing. And is still doing nothing. By the way, her mother died of metastatic breast cancer with no lymph node involvement.
Point being that while everybody needs to do what's right for them and what they can live with, there are certain choices that are just unwise and aren't right for anybody!
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Heading for last tx today, yeah! On steroids so the drive in should be exciting! Forgot that caffeine and steroids make my heart pound so had some heart pounding moments this AM! SPTMM I think from here on out every little pain, every test is going to put us into high anxiety mode and it is really unnecessary until like lizzy says we know the facts! Ann97 I has a bmx and was told i could not have mammos or mri or gammagram because there is so little tissue left (no reconstruction) so I just have to check for lumps, etc and will see the Onc every 3-6 months while on arimidex. my tumors were not near the chest wall, margins clear and no radiation. I have what I call "banana boobs" as it looks like two small bananas on my chest. There is enuf tissue for reconstruction my bs tells me i can still do reconstruction anytime but at age 57 i don't really care and if i can continue loosing weight i won't need the size d prosthesis to balance things out.
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I had a lumpectomy---my tumour was 1.7cm and although I had one node positive--the margins were clear. Originally, I wanted mastectomy--My Doctor said that would be a radical surgery for my particular cancer. I thought that if they were gone--it would be better. My Doc's provided me with the data to make decision--my recurrance rate with rads is the same as MX. I still questionned the decision but after meeting a couple of doctors--they would not do the surgery--as it was considered too radical for my diagnosis. I am comfortable with my decision and my treatment plan. I will have mammo/US every 6 months for the next year or so. I think that this cancer makes me worried anyway--I am more worried of it coming back somewhere else than in my breast.
I have heard of the new method for mammo also--a friend of mine is very into naturopathic solutions etc and she gave me the detail. I'm not 100% sure about it--however, in my case--the mammo isn't what found the lump--it was the US as I have dense breasts. I am more concerned about getting the US than the mammo.
Thanks Lisa for posting that link--was too funny--will send to a few friends for a good laugh! Off to the movies with my kids today--final day of rest before the Christmas visiting and parties begin!
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I had a lumpectomy also. Definitely considered the bmx. It was the rad onc that finally tipped the scales. Once we found out it was a single tumor she came in and took a look at the size/location of the tumor in relation to the breast and said it was 'small' and was ideal for a lumpectomy/rads combination. I also worry about the other breast. I am hoping that the extreme reduction in estrogen from chemopause and anti-hormone therapy will protect that breast and the recovering one from any more cancers.
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Good morning chemosabes and radicals:
For the record, I don't PM anybody except Adey and that is because we have the same dx. I received a PM from Ginger today with regard to a post I made yesterday. Her PM is as follows:
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Lizzy,
I generally appreciate your comments but on a few occasions I have come to wonder if you have cocktails in the evening. Perhaps your evening posts reflect that.
The "loosly cloaked comeback track" was indeed hurtful. Would you consider getting together the statistics on this. You began this thread and named yourself as our fearless leader. Consequesntly I read every word you post, everyday.
Your sister
Ginger
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I joke about drinking but I hardly ever drink NOR am I on the ecclectic mix of psychotropic drugs that the preponderance of our society is on and I don't appreciate that comment. I have worked hard on this thread and no one is always going to like everything. In fact, I don't always like what is posted but I accept as being the byproduct of an open forum.
Regarding that comment, "the comeback track" is the money making machine. They know full well we are going to be back for bloodwork, more radiation-based tests, more check-ups, mammos...the list goes on and on. They also know *exactly* just about to the penny what they can expect to MAKE going forward off fo a lumpectomy, an mx or a bmx and don't kid yourselves that it is not the case. This is a money-making machine here and that is the fact. We are sick with cancer but this machine only sees money.
Furthermore, Ginger, I don't always appreciate your comments but I don't remark about it. In particular I did not like it at all when you commented that cancer was God's way of giving you time to say goodbye. That is a little melancholy not to mention macabre and it was a very upsetting comment.
I know full well you all take off to PM land to chat it up about this or that but I, as the moderate, DO NOT engage in any PM'ing to complain about comments or things that are being bantered about and I won't. I refuse to, it is not my place. If you have complaints about what I say post them on this thread but don't, in a very commodious and rude fashion, PM me with ludicrous suggestions of being under the influence etc... I have not even had an alcoholic beverage since I have been on chemo for that matter.
To keep this forum open, post your comments here.
Liz
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Hi all,'
Just wanted to share a nice story. My kids have some special needs and there is an organization called the littlest heroes project, http://www.inspirationthroughart.org/ in which professional photgraphers volunteer their time. I belong to an online support group for parents of children with hypotonia. When I was diagnosed one of the moms offered me her slot with their photgrapher so we could do it before chemo. We ended up getting a local photgrapher right away and did the pics right after surgery. You know how kids are, I can never get them looking at the camera at the same time, but we got dozens of gorgeous picks and we did it at a local park so the kids had a blast. It was such a pick me up for me to see how happy and beautiful my kids looked. If you go to 'visit the rest of our heroes' and scroll down to Aidan and Caitlin's pics you can see them. I got a little long winded with Aidan's blurb so they kind of cut me off before I got to all his wonderful qualities, lol, but they really are just amazing kids and have taught me so much about courage and what's important. Just feeling blessed since my "baby" will be 6 in 2 days:-)
BTW, the school agreed to double Aidan's speech and occupational therapy last week, so if there's one bright spot to this disease I think it shamed them into doing the right thing.
hugs and happy holidays
Carolyn
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"but on a few occasions I have come to wonder if you have cocktails in the evening."
Ginger you crack me up!Lizzy I'm sure Ginger PMed you because she didn't want to call you down publicly. I personally like that etiquette and try to follow it myself… and to be honest I'm a bit uncomfortable with you posting her PM (P standing for private) publically… I'm not telling you what you should do or if you were right or wrong in doing so, just saying it makes me uncomfortable.
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Lago: nothing about that PM "cracked me up." I am uncomfortable that the comment "cracked" you up. Furthermore the message is don't PM me with complaints.0
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Ladies - let's remember that the written word is far different than face to face speaking- sometimes we say things that we don't "mean" or mean in a certain way....come across or are read in a different way when they're in a posting. And with all of our chemo cocktails and medications at work on our emotions, it adds to the mix of possibly misinterpreting or speaking too quickly... I'd hate to see an argument break out among us when we're right up on Christmas and we've all become so important to one another!
Lizzy and Ginger - I love you both and value all your contributions to the forum!
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Calamtykel: I am not putting up with PMs, sneaky PMs, accusing me of drinking. This is a very popular and strong thread and it is no accident it is like this. I started this thread and I have kept everything I say ON THIS THREAD. I have never once, off topic in the coveted PM land, spoken ill or accusatory of anyone and I never will. It is absolutely incorrect and antithetical to me leading this thread to accept such accusations and inflammatory remarks in a PM form. If you have got something to say, say it here. There is no need to be sneaking around casting aspersions and I am not going to accept it. You can either act civilized and behave according to the spirit of an open forum or don't bother at all because that is not what this is about. It is about being open, honest and NOT rude. I don't always appreciate things that are said here but I don't ever talk about it off thread and, in fact, I just let it go because if someone has something to say, just say it but don't send sneaky PMs accusing the moderator of drinking...who do you think you are?
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OK I'm off this thread. It was fun while it lasted. Have a nice holiday everyone.
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I too hate to see us argue when we are just here for support. I think we all need to remember that we are individuals and are not going to agree with one another and that is okay. We are not here to discuss our beliefs, but to share with one another as we are all going through a hard time. We also need to remember that anything we type online is not private, is permanent and can be taken the wrong way. With all that we've got going on in our lives we should take care to not add more burdens on one another.
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Hello friends,
Lago- you're jumping ship too early.
Lizzy- totally get why you're upset- no one should call out anyone with comments "of evening cocktails".
Ginger- you were probably just trying to keep it private, but obviously that's not the way Lizzy rolls.
I never PM anyone. Ever. Just don't have the time or effort to do so.
Let's all take a breath and reflect on the what this thread has done for us-
- allowed us to trust people during some of our darkest moments
- allowed us to find friends among those who understand the worst of this disease
- allowed us to gripe, laugh and cry together.
SOOOO, it's only natural that in a room full of women we're going to fight. When have you never had a fight with a close girlfriend? If you haven't fought then it's not real. So, ladies, I think we're real now.
THose are my two cents worth- and I want all of you to stick around. I"m NOT done my period and I just started Tamoxifen and I NEED each of you.
Love
Sweeney
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Weight: Iowa, I've got you beat. As of this morning, 26 pounds since surgery in July. This is not a contest I want to win
Hair: Mine, too, is coming in good on the sides, but not on top. I will end up looking like Ronald McDonald if this doesn't change.
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This is my most important group. I value EVERY one of you! I don't want to lose this thread!
I do PM sometimes but I am either asking for advice because I realize that someone knows a lot about a subject and I want to ask a question but its too detailed for a thread or I just want to know how someone is doing during a rough time. I am sorry to hear that the PMs sometimes don't work out, it is a nice way to just check in with someone personally.
And yes, sometimes what I write is taken in a way that was unintended - I made a joke on a humor thread of being 'deported' when treatment was over and someone thought I was being deported out of the country!
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I would just like to say that it would be a shame is anyone of us leaves the group at this point in time. We have been through a lot TOGETHER over the past months. As time has gone on I think that we all have begun to realize that we are very different people with one thing in common, breast cancer. We have different political views, different lifestyles, and different geographic locations. But we all have this one nasty disease and have been through similar experiences in our treatment plan, and that is what binds us together.
As I said before, I value the honesty that can be expressed here. Whether or not I agree with anyone's opinion, I take it as their opinion, and welcome the opportunity to see things in a slightly different way from how I would view them. I speak only for myself, but this group is special because I can be completely honest. I don't have to censor what I say depending on who I am talking to, I can just say what I am thinking. That is a wonderful thing to have when you are in my situation.
Anyway, I hope everyone will just take a deep breath and relax. And remember, who was there to support you with their words and prayers when things were the darkest just a short while ago. Surely, that support is more important than an opinion expressed that differs from your own.
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Yeah...what Sweeney said. That's kinda what I was trying to say. A room full of women on major drugs and going through the most horrendous thing of our lives. Lizzy- I agree, private (or for that matter public) accusations in that way should have no place on a support forum. I didn't mean to say you should accept it as okay. I also don't use PM's - as some of you know, I don't even CHECK my PM's! =:O
I just meant I didn't want to see anybody jump ship or for arguments to continue (lago - don't go) when we've come so far together in a journey that is nothing less than horrendous. Don't know what I'd do without you guys.
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Calamtykel and Sweeney: I agree and you both make very good points but I am not going to accept that type of commenting at all. That fight on capitol hill and the resistence Pres Obama is getting to his healthcare plan, be it good/bad or indifferent, is purely because there is an egregious amount of money at stake. Any good fight in our country is about greed/money and/or privelege. They don't fight about anything else. For this reason, one must understand as much as our disease is an emotional train wreck for all of us, our healthcare system has a dollar amount forecasted for each sickness/disease and they know unequivocally what can be made off of these diseases. Mind you, there are docs in the system that care and are decent but the maddening nature of our capitalism seeps into even the kindest of hearts out there. It is just the way it is and they know what the comeback rate is. This is how our healthcare companies don't go broke which is through actuarial tables and forecasting.
In any case, I have company coming and then I am going visiting tonight.
Happy trails to all -
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One small point- for what it's worth- Rachel and I are both ensconced in the Canadian system. All bills paid by our province. Every time. Both of us were encouraged to go the lumpectomy route. So, in our cases, lumpectomies may not have been the most cost effective choice for the "the state" but were the ones we encouraged to take. Interesting? Maybe, maybe not. Just an addition to the discussion I enjoy so much on this thread.
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Life is about trusting your feelings and taking chances, losing and finding happiness, appreciating the memories, learning from the past, and realizing people change...
Most people want a fresh, new start in their lives but are unwilling to part with old habits. True transformation requires that we release that which no longer serves us. Letting go is not about fixing anything, but about releasing everything. Letting go is about stepping into the flow of life to achieve our greater good...
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Happy Holidays All...
Everybody loves a winner, it has been said, but nobody knows you when you're down and out. One of the often unappreciated benefits of adversity is that it accelerates the process of identifying your true friends. Most of us have many acquaintances and associates, but we are indeed fortunate if we have a handful of real friends. You will very quickly identify yours when you ask them for help...
"No person is your friend who demands your silence, or denies your right to grow" Alice Walker
Hope everyone is in good spirits... If not I am sending out a big HUG...
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sohard - That was beautiful! How are you feeling, recovering alright??
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