March 2011 chemo-lounge
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Hi Ladies,
Well, I am 3 weeks past my last chemo and I feel great. Really truly great. I do not have all my super power back but I am working on it. I went shopping with my 7 year old on Friday and I didn't have to say to her, " mommy needs to rest a bit now" and then plop my butt on some bench! We also went to the YMCA pool and played for an hour. I went home cleaned the house up a bit then had enough energy left over to make love to my BF. heh heh! Did I mention the nearest shopping in an hour and a half drive one way?
I plan to tackle to gym again today and hopefully won't have such a struggle doing my program. Last week was very defeating in that area of my life. I have been walking more, riding my bike a bit so I'm hoping to manage better now.
Maria, thanks for the encouraging words you wrote about physical activity after chemo.
There is a much brighter day after chemo, I just wish I had hair and a boob now.
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Thanks for your post timerdog, so glad to know after last chemo we start building up some energy right away. I head in for tx #5 on thursday. Just taking it one at a time cause I swore after the last one that was it I waas done but here I am preparing for number 5.
Had a busy weekend with company all weekend and DH birthday party and trying to catch up on laundry and yardwork. Figured I better get something done before heading into the chair. I am so looking forward to getting a somewhat normal life but have to get rads done first.
Does anyone know if there is reconstruction surgery for lumpectomies?? I hate the look of my boob and it depresses me so much when DH and I are intimate. Any suggestions would be appreciated.
Have a great day girls
Hugs Kymn
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Divine, I was exhausted the day after chemo even before the shot. I had treatment Friday (last one-you too, right?) and shot on Saturday at 5pm. But I was tired, tired, tired, all day Saturday even before the shot. Then I woke up Sunday at 3am with pains unlike previous SE's. Usually I was achy in the bones-this was more sore, like I had bruises or someone had hit me with a bat! I even looked to see if I had bruises, but i didn't. I was also very weepy all day. Over anything or nothing. My husband kept saying, "It's day #3, it's always bad for you" which is true. But this was different. I think just being done-being a little overwhelmed, not knowing what to expect next with rads, all of that. I'm just tired.
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We're going to have to start a July 2011 Rads lounge!
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Huskerkkc, yes, my last one, so maybe that's a reason I'm feeling a bit out of sorts or overwhelmed with new stuff coming up to deal with. You post has helped me know that I 'm not alone.
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If you start a rads lounge, can I visit and buy an occasional round for everyone even if I don't need rads? The thought of you gals hanging in a lounge without me at this point is a bummer!!!
Otherwise when we are all done with chem we will just need to have "the lounge" to chat in with no "chemo" or "rad" in the title....0 -
Newsflash: My left eyebrow which is a game of connect the dots these days actually had some hair growth! I noticed a bunch of stragglers that needed tweezing under the connect the dot area where I would like there to be hair....so I guess things are starting to grow again. No stragglers on the right side though....strange. But then again the right brow does not have connect the dots either..it is thinner than normal but all in tact. Just thought you all would appreciate my "newsflash". Just so you all know I won't be doing a "newsflash" on any activity down under (he he!). That may be TMI!
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ha ha that is great! I haven't lost eyelashes or eyebrows. I did have to shave my legs last week cause of some hair growth and noticed I have places that need it again! I am excited for hair growth just wish it was on my head and not my legs. i like not having to shave for the summer! Def dont need to know about the down under lol that would be tmi!
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mdg--I'm afraid that I'm going to be rattling around here talking to myself if everyone goes to a rads lounge! I'm not done until July 6th (done done= @July 16th.) I won't be doing rads but will drag along with the herceptin until who-knows-when.
ksmatthews--I'm still shaving my legs occasionally too. I was looking forward to a summer without shaving as a small reward for all this, so what gives? I do still have hair on my head and it's growing. Can't wait to see what happens when the chemo isn't slowing it down0 -
Don/t worry pasmithx2-you and I can shut the door together...my last one is July 8. Then of course the H for another year.
I met my BS yesterday. Onc had said he picked her becasue he thought we would be a good fit personality wise. When she came up to greet me she had on flip flops and hawaiian print capris-it was all I could do not to laugh out loud-we hit it off great. That onc really gets me. She had a young OB/GYN resident with her that looked about 12. Anyway I will have some questions about surgery to ask you guys later. I have been reading the April/May threads but I don't know those people like I know our people.
After our meeting was concluded I told the young doc I wanted to say something to her. I also said I wasn't sure if I could do it without crying (which I did dang it). The BS who did my core biopsy is a partner in the group with my new BS. She was the first person I had come into contact with who confirmed my cancer dx. She took 9 cores out after a lengthy exam-then she put her hand on my shoulder and like swiveled her head so her face was just inches away from mine and she said "You had to know this was really bad, didn't you?" She had such disgust in her voice...I was disgusted enough with myself already and to have her reinforce how stupid I felt..
I just sat there staring that 1000 yard stare and din't say anything because I was not going to break down in front of someone who already thought I was an idiot. She was only echoing what was in my head already..but the last thing I needed was to be chastised. I have replayed that over and over in my head-was I reading something into it that wasn't there, was I being overly sensitive?. Remember when we started how fragile we all were? She called me at home 3 nights in a row because she said she was afraid I was not going to seek treatment. I asked her why she thought that and she said she had never seen anyone so stoic and unmoved. All this was way before they knew I was Stage IV.
Anyway. I related this story while looking at the young doc-I was crying and snot running-and I asked her to please remember down the road when you have to tell someone bad news-be gentle with them. Maybe they dont need a hug but be really sensitive to the fact that you are telling them something that is going to change the rest of their life.-and not in a good way. Hopes and dreams dashed, monetary issues, maybe losing your feminine identity-hair, breasts ect.. JUst be kind!!!
I also related that my family doc (recent grad) called me on my cell phone with my mammo results and didn't ask where I was, if I was alone, driving a car-she just blurted out " Oh Joan, I am really, really sorry. I think I screwed up. It's really horrible news." You think? You have been treating BC for 2 months with cortisone and antibiotics? I have never ever heard another word from her-and she gets CC on every paper sent out on me. I still am convinced she thinks I am going to sue her. But to not even ask If I was alone-when she said that I projectile vomited Taco Bell all over my coworkers. Like I told this young resident. These things have left scars that still make me cry. Just be gentle!!
I wonder if I lost ground with the BS-but if it makes a difference for this young doc down the road I don;t really care. BS said this is all water under the bridge and we are moving on, right? If it was just us two I would never have said anything but couldn't miss the opportunity to tell this to the young lady.
My God, sorry to have rambled on like this but this is way cheaper and more therapuetic than seeing a shrink!!
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Dear Kymm,
My lumpectomy boob changed further up to a year after radiation tx. I think they would not touch it for a while. But after that settles in, a good plastic surgeon can reshape your affected side (and the other to match) if you want that. When looking for a plastic surgeon, I was able to ask some nurses and doctors if they have seen any good work. At our hospital, you tend to get sent to the same one guy after cancer surgery, but I have learned that you can get to the really talented guys if you want. Ask to see their photos! Some of them are super artistic.
But thats very likely going to be a delayed gratification. YOU WILL get past this, it just takes time.
~~~~ Kathy
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Lilylady,
I think you did the medical community a great service. Tears stream down my face as I write this.
Thank you for saying the words that needed to be said, in fact they need to be shouted over and over again until it is imprinted on the medical community in such a way they cannot fail but to be kind.
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lilylady, I know that your conversation with the young doc really had to resonate with her. I believe what you told her will stay with her when she has to give her diagnoseses to future patients. She will be sensitive and understanding. Your words will stay with her.
It is always surprising to me to hear of the poor ways doctors choose to give their patients test results, ect. Are so many of them so removed from the reality of their patients' lives that they have no idea what effect their words are having on us (perhaps for the rest of our lives?).
I hope in speaking to the young doc, and crying, and getting your emotions out there, that it did help you, lilylady. You are going thru so much and just forging forward. It is so okay to show that emotial side to the medical community. I don't see how you would lose any ground with you BS, other than to paint an even more human face on what we all experience.
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Lilylady: I feel the same way you do about the insensitivity of health care professionals including doctors when dealing with cancer patients. I am considering writing a book about this because I feel they lack sensitivity training and this is so emotionally damaging to patients that are dealing with the worst thing in their life. I get sad about some of the things that have been said to me during this but then I get really angry about it. Then I want to DO something about it. My friend is putting me in touch with her publisher and this publisher does a lot with healthcare. My friend thinks the publisher would be very interested in my story and what I want to write abou. I am strongly considering writing a book (I am not a writer so this is out of my realm....). I just feel that it has to be said. There was nothing wrong with you sharing your experience with the doctor at all. What you experienced was not a good thing...no one should have a doctor say things like that to them. Yes, doctors need to be honest with their patients, but they need to be compassionate and understanding of what it would feel like to receieve that news. I hope as you move forward this surgeon understands you as a person and can be kind and sensitive to your feelings and needs through all of this. I love the flip flops! LOL! Keep us posted on her recommendations and how you will move forward. If you have questions about lumpectomy or mastectomy, let me know..I have done both already (I feel like a pro now). Hugs!!!!
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Lilylady, Once again you have moved me. I don't know how these docs can go into oncology. It's been on my mind lately. How can you every day have to keep dealing with this and all the patients that are effected by it, as you say in a bad way. When they have the choice to go into ob/gyn and see thrilled couples having babies or some other field with such good feelings. I'd kind of like to ask my onc, but it seems like a put down. Obviously, we need them, but I am just baffled that they can keep handling it day after day with one new patient after another. I do think they should have more training in sensitivity. Of course they need the medical training, but there really should be some training in how to treat patients as well. I don't have any complaints at all about mine, but still think some additional kind of training would be good. There was a movie about a doctor, a surgeon, that got cancer in his throat. He was a real ba$tard, didn't care about his patients at all. Then his experience changed him. It was a good movie, I can't think of the name. I'll ask my DH tonight.
No worries about closing the lounge down. My last treatment will be July 25. It would have been the week earlier, but we have a vacation down the shore planned and they said it is okay. Surgery is now moved back to August 17. Then after that rads. I guess it will be a Sept. start.
I am so hyped up on these steroids. I think it's actually more in my head than real, but I am just such a bundle of nerves. I can't seem to just calm down. Can't wait to get off them.
Everyone have a great day. It is SO good to hear about some people feeling back to normal and doing great. For those of you who have finished, but aren't feeling great yet, I'm sure you'll be there before you know it. Congrats on your DS graduation Mrs. M. Hope the party goes great! Everyone have a great day!
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Thanks to all who posted a message to me after my surgery last week. I will say it again - it is really so comforting to have your support. It was a lumpectomy and the surgeon took out more tissue than expected because I had an ADH near the surface and they found some calcifications in between that I found out about on the day of surgery as they were "wiring" me and the BC was at the chest wall so they took out everything in between. I think I am lucky to have had the surgeon that I did - the bandages are still on but it looks good so far and I am hoping not to have any reconstructive surgery. Apparently the BS put some saline in (?) (have not yet spoken to him as I was very much out of it the night) of surgery). I overheard my DH telling someone that the BS put sand in to fill me out - how funny is that??? I will get the pathology report later this week so I am getting anxious over that. I did my chemo first so did not get a sentinel node prior to this sugery. My BC was there on my mammo at the end of 2009 and I was not told about it so after a 14 month delay I was very anxious to get the chemo started and did not want to wait the extra couple of weeks to hear results of the node biopsy.
Lilylady - You have been through so much. I think you did the absolute right thing to tell the new onc about your experience so she will be more sensitive. Like you, my "family" doctor who I went to for the first time at the end of 2009 (the same practice that did not folllow up re the BC) has never once called me since the diagnosis. This is so very different from the NY doctor that I had been seeing for years before moving to CA - she has been following up with me thoughout this. I actualy flew back there for one day after my diagnosis here and she had me see a BS and onc there had my patholgy slides tested again to confirm everything. She is absolutely the best and it was just unfortunate that I moved my medical care here that year. I was so ignorant of all this and she is truly a bright light. I had no real idea about BC before this. Never knew about HER+/- or hormone receptors. I thought that if you found it early it was simply removed and maybe radiation.
I will be moving on to rads soon and I hope to keep up with all you ladies in the lounge. If there is a new thread for this please let us all know or maybe we just keep this one going.
Hair - I am almost 4 weeks out from my last chemo and still no sign of new growth so I am getting a little bit worried. I had been using Latisse on my brows and just yesterday noticed a few really long hairs there - funny looking and will have to trim them but at least there is still some hair there. Still have my eyelashes so far.
Good luck to all in the chair this week.
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kay, I think the steroids do make us wired for a couple days and it's not just in our heads. That's been my experience.
Lilylady, maybe you finally got emotional with a doctor whom you instinctively felt could understand your pain and help you through it. Certain people have certain effects on us, so perhaps that is a good sign. You know you have lots of support here on the forum, too.
mdg, come join us in rads whether you have them or not, definitely want to keep in touch with you!
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Lilylady, you have done us all a great service. Some of us are too intimidated or just downright shocked to tell our doctors what we really think. I'm sure what you said made a big impression on that young doc.
Someone wondered why docs go into oncology. I have wondered the same thing, also about oncology nurses. Most of the onco nurses who have treated me are special people. A friend of my mom's goes to the same oncologist as me, and he told her that he had cancer when he was a teenager...went through chemo and at a time when they didn't have all these drugs to counteract the SE ((he's now in his mid to late 40's I think). I think this makes him much more compassionate toward his patients, most of whom are dealing with BC.
As I have said before, I am facing re-excision to get a clean margin on my lumpectomy. Assuming all goes well, I'll then start radiation. Does anyone know how much time has to pass between surgery and the start of rads?
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Jules - I had my surgery last Wednesday, June 1 and if my pathoogy comes back clean I was told rads could start in 2 weeks (3 weeks from surgery). Good luck on the re-excision.
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Chrissy,
Thanks. Hope you're healing well. My last chemo is next week. I'm ready to move along and get this junk over with. Treatment can't be over fast enough for me.
Praying for you, that you have a clean path report.
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my last chemo is June 30th not quite ready to move onto rads board yet kinda like it right here with my girls
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Kymn,
I think we all should all stay on this board indefinitely and check back in often. After all, we all started this journey together, didn't we?
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I was the one who asked how someone could go into oncology. I have a feeling my onc had cancer young as well. (She is only about 35 now.) She said something to me one time asking about my anxiety and mentioned that when she was younger, she had a lot of anxiety because she felt she had no control over her illness and didn't know what was going to happen. I didn't think she wanted to expound, so I just agreed that was what made me the most anxious too. I wonder how many oncs. have gone through cancer. I was wondering that before.
Kymn, you're getting there! Congrats, it is less than a month away until you'll be done. Jules, good luck on your surgery. It must be disappointing to have to go thru it again, but I'm sure that they know what they need to do and have heard a lot of people on these boards who did not have good enough margins on a pathology report and had to get some more surgery.
So I have to go tomorrow morning for a new chest scan and then the new chemo (taxotere). The onc is really good. She wants the scan so she'll know what's happened between the last one and the Herceptin I had last week and then if the lungs have problems again, she'll know it is the taxotere and not the Herceptin. Still not feeling good about having to get a scan though, especially as hyped up as I am on these (^&(^*(^% %*^ steroids. I'm on double the dose I was on for AC and then will be getting additional in the IV pre infusion. Definitely taking a couple ativan before I go tomorrow. I guess it's for the best though. I really hope it goes smoothly, scared to death of having another reaction. I guess I'll know soon enough.
Have a great night and week everyone. And I echo what Kymn and others have said, thanks for all the support. It has meant so much. Can't imagine the mess I'd be without all you girls.
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Kay1963: We can't close the lounge down.....don't even say such a thing! I would miss all of you too much for sure! Enjoy the steroid buzz while it lasts....wishing I had some of your energy today!
Jules: My sister is a chemo infusion nurse and she is so much more empathetic than most of the people I have dealt with. I don't know how she does it...she use to do pediatric oncology when she started years ago. Now she only treats adults. She has actually gone to visit patients in the hospital sometimes after work if they have gotten hospitalized. I have seen her cry more than once over losing a patient. She is appauled at some of the things I have experienced since my dx by less than empathetic healthcare folks. There are some good one's out there......too bad there are not more.
Chrissy: So nice to hear your surgery went OK and you feel OK. Please tell us what the pathology says.....hoping all is good!
Divine: Thanks for the invite...will they have a jukebox in the rads lounge???
Kymn: I like our group....don't want to close the lounge. We need to all keep checking back often...you gals make me smile.
OK can I tell you all my strange moment of the week??? My BFF was here for the weekend and we were talking about my exchange surgery and my tissue expanders. I was saying they were so hard...she wanted to feel it so I let her. I never thought I would have my BFF touching my boobs......hilarious! I guess at this point since my diagnosis, my breasts have seen more action by docs and medical professionals it has surpassed the total amount of "action" they saw in my entire single life while dating.....thought you gals would love that. BC brings out so many strange things...then again I never thought I would also be on the internet discussing my boobs and constipation and such either....I have lost all modesty, privacy, vanity.....etc.........
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Lily, Thank you, thank you, on behalf of all of us, for speaking up and sharing with the med student. When i first met my onc I cried through the whole appointment. He asked why I was crying. Was it chemo, was it losing my hair, was it being triple negative? Yes, yes, and yes. He said, "hair grows back, four months". Having just had my last chemo on Friday, June 3, that puts me at October at a minimum. Not reasurring in March or in June, true though it may be.
I found out that my lump was cancerous from my husband, while I was at school (I'm a school counselor for those that may not know.) My family doctor of 20+ years had gotten the pathology report and called my husband to see if I knew yet. We were still waiting to hear from BS, who was not going to call until the next day. My husband called me at school, on my cell phone, to see if I had heard from the doctor. As soon as he said that, I knew it wasn't good. My family doc said we could come in anytime, but I left school immediately. My husband felt horrible (still does), my doctor felt horrible (he thought we knew), and I have been a wreck off and on ever since. The best thing my husband did was to ask for sleeping pills, starting that day. I could not have made it without Ambien and the Ativan that I already had for a previous heart flutter (that oddly was gone by the time cancer showed up!)
While I was still getting my counseling degree (12 years ago), my daughter had a classmate whose father committed suicide. The counselor went into the classrooms to tell the kids and DD remembers her smiling as she told the kids. DD told me then as a sixth grader, "Mom, if you ever have to tell someone bad news, please do not smile while you do it." That memory has stuck with her and me. Knowing the counselor now, I have surmised that she was probably smiling to keep from crying. But kids see through that and so do adults. I keep her words in mind every time I have to share bad news. Just like keeping in mind where someone is, whether or not they are alone, the words that are used, the gestures that are used...all of these are so important.
Also, I say we keep the lounge open indefinitely. I will start rads in a few weeks I guess and I have poked my head in once to see what to expect, but I don't know anybody yet, and I got scared and wanted to come back with y'all! I suppose I will join them eventually, but you're stuck with me!
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Lilylady - it was so important to tell your medic how you felt - how will they ever learn if people don't tell them. I guess we have all had health care professionals ranging from the downright cruel to absolutley lovely. I am going to write a few letters after treatment is over. Good ones to the people who have been wonderful, and others to a few who have not. I don't intend to be rude I just want them to understand what they do to us.
I had my "planning" CT scan and appt with radiotherapy today. I have my radio schedule from earl July to 5th August (3 weeks after last chemo). I have 3 pinpoint tatoos on my chest - I asked for peace signs instead but they said they only do dots. Confrmed that no chance of reconstruction afterwards though - so will be looking for 2 good falsies after they remove the left one later this year
I vote we just keep this same group open and carry on - I would hate not to know what happens to all of you and how your lives change over the next few years. This group has been amazing in providing support and allowing us to voice our feelings in a way it would be impossible to do with almost anyone else.
Write your book Maria - I am sure we can all send you quotes and you are talking from a unique persepctive.
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3 weeks and 2 days past my last chemo. Except for the hot flashes and night sweats I'm doing well. I start back on the tamox on Monday. Not looking forward to that! I'm on a detox diet right now trying to rid my body of any left over drugs. It is working well for the most part. Plus I'm dropping a few pounds.
Still do not have my strength back. I went to the gym on Monday, could not complete my not so hard routine. Legs felt so sore and weak. I did get in a bike ride later in the day. I also find my gym so hot!! I'm bringing in a fan today. Mentally I struggle everyday with my "meaning of life" quest. I find I'm doing little things that I would have never done. For example yesterday it was very hot and humid in Ontario. Now usually I wait until Georgian Bay has warmed up a little before I go in. My 7 year old was in the water calling to me. I waded in and thought, " no freaking way!!!" But I went in anyway, played and splashed around and guess what. The water really wasn't so cold after all. I just had to go in to find out.
The reality is that next year I could be dead. Whether I like it or not, time is not on my side. I need to live every day and take the plunge into cold waters.
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Penny,
Forgive me and ignore this question if it's too personal, but why no reconstruction? Is it because of the radiation? I know my BS said early on the reconstruction would be difficult at best and would have to be delayed at least a year because of rads. That is why I'm hoping and praying the re-excision of my lumpectomy works, otherwise I'm looking at a mastectomy. I'm a real chicken when it comes to surgery and the thought of facing several more for reconstruction...well I don't know if I would do it.
On that topic, I spoke to my BS nurse yesterday and told her I would be done with chemo the next week. She moved my consultation with my BS up from the end of July to the end of June and re-excision July 8. The surgery sounds much simpler than the first because they won't be messing with the nodes (no drains...Yeh!!). With any luck, I should be finished with rads by the middle or end of Sept. Keeping my fingers crossed, and toes too.
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Timerdog: I too search for the meaning in things especially with having a young child. I do more things than I did before too thinking he may remember this one day even if I am not here.....such morbid thoughts but I can't help it...they creep into my head. I do strange stuff like all of a sudden serve dinner on the kitchen floor as a picnic - my son loves this stuff. I let him put his apple juice in a champagne glass sometimes too and we "toast"....he loves this crazy stuff. I just want to see him smile and laugh as much as possible....it makes me feel good but then the bad thoughts creep into my head again. Does that make sense??? As far as reconstruction - give it time. Maybe after you heal up there may be options for you if you want to do it. It is also worth seeking more than one opinion of you are interested in having it done. I am excited about my reconstruction.
Jules: It's good you got your surgery date. You can just get that over with and move on. I also hope your reconstruction is an option and works well. Make sure to eat well to help your body heal after all of the rads.
Penny: I do hope everyone stays around the lounge. I am so attached to all of you. I also look forward to the day when I can see each person's avatar photo with hair!!!!
Kristy: I am so sorry about how you got your BC news. Horrible......not that the news wasn't bad enough even in the right setting. I can still remember when the dr told me...she walked in the room and didn't even look me in the eyes...her head was down and she just said "it's not good. there are cancer cells". She couldn't even look at me or my DH. It is etched in my mind...I will never forget it. At least at that point I was with DH in their office but the week before when they told me it was suspected, I was alone and shocked...it was an out of body experience like I was watching it from outside. I am sure whatever Rads Lounge you ladies find won't be as cool as the chemo lounge. I will hang with you all as I appreciate our friendships! That was a powerful story about your daughter too.......wow. What an amazing thing for her to say. Kids are way too smart sometimes.
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Jules - they have said that reconstruction with implants has a low success rate after radiotherapy because of the scar tissue. The expanders thing does not normally work. Some BS will do it but mine says he prefers not to after radiotherapy as there are almost always problems.
He would do a Dorsal flap or Lat flap reconstruction (back or stomach muscle and fat) but the operation is very long - can be over 12 hours for 2 breasts. I feel this is too much of a health risk , although I know people do it. The longer the surgery the more risk and I cannot bring myself to risk my health to get my boobs back.
I am 55 and have been married 34 years. I guess if I was younger or single I might think the dorsal or Lat worth it, but I can't face an op that long. I am going to wait probably a few months after end of radiotherapy , then have the left breast off (mine is LCIS which does not show up reliably on mammogram so I am not repared to risk keeping the other breast.) Then I will get a couple of the best prosthetics I can find. DH is OK with it (not that he has much choice really)
timerdog, maria - while we have this constant threat hanging over us, maybe one of the blessings is that we now appreciate all those little moments and are more likely just to do stuff and not waste precious moments.
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