August 2010...anyone starting chemo besides me?!
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So as I was going through a box of books the other day I came across some of my books on vintage film; one of them is the Films of Shirley Temple. I started reading - or should I say re-reading the autobiographical part where she is interviewed by the book's author on her breast cancer experience. I can't remember having read this part before - probably because I did not have BC before!
This book was written in 1978; Shirley was diagnosed in 1972. I found what I read to be very interesting. I've had this book since I was a kid - about 13 because I really loved Shirley Temple-what I read made me admire her all the more! AND made me VERY appreciative as to how far medicne has come since 1972.
First, I was amazed that she was only 44 at the time. As a kid, it seemed to me like she was an "old lady" when she got BC! =:O
Secondly, she was diagnosed and at the time, apparently, they would do the biopsy under anesthesia - basically a lumpectomy from what i understand her description. Then if it was found to be cancerous, while the patient was still under, they would do the mastectomy. So you never knew what you were going to wake up to! Shirley put her foot down and said she did NOT want to wake up without a breast - that she wanted to be the one to make that decision and be prepared for it. This was NOT customary nor preferred by most physicians at the time.
Shirley states that her tumor was 2 cm with one cm of it cancerous. She had a radical mastectomy - 12 lymph nodes were removed along with the breast. So back then there was NO sentinal node biopsy! They just took all the axillary nodes. I assume this is probably because they could not detect micro-mets at the time??
Then she describes the emotional trauma of losing a breast and the impact it had. What struck me about this part was " no reconstruction!" Because there WAS NO SUCH THING! Women had no choice in this matter. What she did say was "when I figured out how to pronouce 'prosthesis' I went out and got one!"
Lastly, and most surprising to me - Shirley was the very first celebrity to come out and talk publicly and openly about breast cancer. At the time it was considered "offensive". In our world of pink ribbons - can we even CONCEIVE of this??
Shirley came out and did a large interview for McCalls' magazine - explaining to women the importance of self exams, etc. What followed was an out pouring of letters - 50,000 of them including women who'd had mastectomies and it was a "secret" in their lives - because nobody talked about it then!One women wrote that she was offended that Shirley would speak of such a thing as a removal of a breast. But this woman did a self exam and found a lump and ended up having cancer, and had a mastectomy also. Shirley said that it made her efforts to speak publicly about BC all worth it right there.
I was amazed at how things have changed since 1972. For most of us, this has been right within our own lifetime. How fortunate we are to have a forum like this board, and doctors who have become so trained and skilled in breast care and surgery.
Anyway, I thought these things were intersting - I found myself engrossed in reading about her experience. It certainly endeared this remarkable woman to me all the more!
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Hi all,
On hair- one thing I kept meaning to write about and never did....I did have a weird experience with one part of my hair! When it began to fall out and look absolutely bizarre my DH shaved it off with a shaver thingy, but only down to the Number 2 blade. So I looked like an army recruit. Then about a week later it really started bothering me as the little bits kept falling out, so I took a piece of duct tape and slapped it on the side of my head over my right ear. Pulled it off (think of hot waxing!) and got a tape full of bits of hair and a serious bald patch over my ear. It hurt too much and I didn't go any further around my head with it. But I did look pretty wierd with the rectangular bald patch. Oh well. I wasn't exactly going to win any beauty pageants anyway. I also shaved a tiny bit all the way down at the front, b/c I've never liked my widow's peak and thought this was the one time in my life I could get rid of it!
Fast forward several months later when it started to grow back in. That bald patch that I shaved and the duct tape experiment were the very last parts to grow back in. Weird huh? I'm not sure why? My working theory is that by removing the hair completely the follicle closed off and the new hair had a bit of a harder time pushing through. Now it did indeed push through, it just took an extra couple of weeks. (Also keep in mind, I only had 4 rounds of TC, not six. Also probably something to do with my hair growth?)
My eyebrows lasted all through my treatment and fell out 2 weeks after I was finished. That was awful. But they've grown back too and last week I actually got them waxed and shaped as I was starting to look like a seven year old boy with wonky-everywhere eyebrows.
Cal- totally interesting about Shirley Temple. My grandma had BC in the 70's and we never talked about it. I think of her so often now and I know she's been watching out for me- I can feel her love and support even though she's been gone for many years. I would do anything to talk to her about all of this.
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Cal - That was interesting about Shirely Temple, I didn't know about it.0
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Hi Everyone!
I am with Sweeney on the hair growth, look almost exactly the same. My hair is a little darker I think than before with, of course, that darn quarter size gray spot!
Calam: My aunt had breast cancer back in the 70s and she has told me a similar story. She has a mastectomy and still volunteers for the local Breast Cancer Coalition, visiting mastectomy patients in the hospital before they go home. She has been a great source of support for me, and right from the beginning it was clear to me how much better we have it than they did back then.
I have been wanting to see how much my breast cancer cost for a while, so I finally sat down this morning and totalled up all the insurance payments thus far. The grand total was $135,000 paid by my insurance company so far. The sickest part was that $90,000 of that was just for the radiation therapy! What a ripoff, 35 half hour sessions, 9 doctor's visits, and 3 set up visits; and it cost $90,000.
Regarding the hair on top. My sides grew in faster too. I was beginning to wonder if I would spend the rest of my life with male pattern baldeness when all of a sudden the top just sprouted up. So, don't worry...it is coming.
Ann: As per our agreement, I too, went topless starting yesterday. I even went to church with my little boy hairstyle, but my hair while short really is growing in thick so I have full coverage. Really feels good to be free of the scarves and hats, although it does look really funny. I think I got a couple of those, "what was she thinking with that hairstyle" looks.
Lizzie: Hope you are home by now. If you have an open wound, definitely ask for the visiting nurse. They will try to get you to learn the wound care yourself or come to the hospital to have it done, but you have a right to a visiting nurse, so insist on it!
Vegas sounds great, I don't know if I could afford it, but I might just go for it. I have decided that I need to enjoy life a little more and treat myself better. Breast cancer has given me that gift.
Have a great day guys!
Debbi
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I've never been to Vegas either - I'm game too.
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All--My hair is coming back pretty fast now--again, more growth on the sides than the top. I am looking forward to having more hair so I can go without scarfs etc.
Tamoxifen--I have been taking for a couple of weeks and have a little bit of aches--not sure if that is from the fact that I started exercising each day or the Tamoxifen. It is hard to figure out what is an actual side effect or just something from regular/everyday life. I am sleeping like crap because of hot flashes which is very strange because I had radical hyst back in May so I didn't think that I would get any additional hot flashes. Last night I must have woken a hundred times to try and get more comfortable/put the fan on/turn it off/open the window etc. Hopefully tonight is better. I did have some sleeping pills prescribed during chemo as I was having a horrible time sleeping but I don't want to take them anymore as I worry that I won't be able to sleep without them.
Vegas sounds good. We are going to head on vacation when I am done radiation and hockey season (kids are both playing rep hockey) is done. I am looking forward to vacation and hope to have hair by then! I start radiation next week.
Lizzie--Hope you are doing well. The company I work for manufactures a lot of the wound care products--esp. for packing etc. Here in Canada--home nurses will go to teach people how to take care of the wound and also visit a few times a week. Hopefully you have that to help.
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calam I had forgotten about Shirley Temple having breast cancer. Guess that does show us that it was not spoken of during that time. Right after I was diagnosed Marg Helgenberger (sp) from CSI was on TV with her mother. Her mom had BC many years ago and I believe she said the Dr would tell you if you woke up with a drain you knew it was cancer. If not it was b9.
How things have changed....thank goodness.
libraylil
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Good day chemosabes and radicals:
I am still in but am a hopeful discharge for sometime this week. The VNA will come in to do wound management and to train me. I guess all the supplies will come from a medical supply company. I am a little nervous about this open-wound business but did I ask the important questions like about showering, stomach-sleeping, nd does itching mean it is healing etc... = NO...I forgot, of course! I guess the VNA will help me.
Iowa: I say I should be done by Oct b/c my PS can't do anything with the area that was operated on for 6 months. This pushes me into June before he can do anything and step 1 will be replace the TE, step 2 (probably 1 month later) is going to be start fills and then the final step, which probably won't take place until September, is final implants. This set the timeline way back. I also have chemo yet to finish.
Calamtykel: it is amazing to read the "horror" stories of what women went through in the 70's. My friend's mother had bc and her doc kept telling her the lumps were in her mind etc... until finally she found someone that helped her. She had a bilateral. My friend was like 11 when her mom came home from the hospital and she remembers she and her brother using her prosthetics as floatation devices in the pool and putting them on their heads etc...! Bottom line is we have come a long way and there is a sisterhood now and this board helps tremendously. Imagine what it was like to have bc and not have anyone to talk to about it NOR were you supposed to even discuss it? What an awful, lonely existence.
Sweeney: that is weird that the duct tape area took longer to come back but I think your reasoning on why is spot-on. That really sucks on the eyebrows. I mean at least they are back, and apparently grew in with a vengeance, but why you lost them 2 weeks after your last tx is beyond me. It must have felt damn good to get them waxed!
Sptmm: did you have chemo? I thought you did. My costs of chemo alone were $150,000. I hope we can all get to Vegas. I believe we get a group discount also. Yes, so treat yourself good and try to make it. The costs should not be that bad.
Omaz: is going to Vegas! YAY! I think as many from this thread that can make it, the better. Plus I can't wait to meet so many more from this site.
Rachel: glad your hair is coming back and fast. That is great news. Where are you vacationing at the end of hockey season? I hope you are going somewhere warm with a slow pace
Well, it is time for me to do some more relaxing....as if this is even humanly possible....
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When my grandmother had her double mastectomy in 1978, she was living in FL and we were in NJ. We went down to visit her and she said nothing.....and when we returned home about a month later, she wrote my mom a letter that said "by the time you get this letter, I will have had a mastecomy". And that was it. I remember being horrified when my mom told me (I was 9) - that I was afraid to go see my grandmother because I didn't know what a lady with no breasts looked like.. she did go without her prosthesises when she had her housecoat or nightgown on. It scared me in a way and i wondered what would happen to me if I ever got BC. For a long time after that, I would pray at night that it wouldn't happen to me. Well, I guess God had other plans for me!
We believe she had IBC though because my mom said that her breast was swelled up and red and that she didn't tell anyone and waited to go to the doctor..... She did have chemo (I can't imagine what that was like in the 1970's when they didn't have the meds for the SE's that they do now, nor the support!!) She died of brain mets less than 3 yrs later.
Back then there were no websites like the Scar Project and no support groups.
OH - one other interesting thing about the Shirley Temple interview. The book author says "breast cancer affects about 7 out of every 100 women in the US." This was back in 1978 -- so I thought that was interesting. I know the affected rate has increased but I didn't realize it was so high in 1978.
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Lizzie: Yes, I had four rounds of Taxotere and Cytoxan. That total was what the insurance company paid, not what was billed. Each of the chemo treatments they paid about $7,000 (including the Neulasta injection which was $2,500). I do have to tell you that hospitals get paid a lot more percentage wise of what they bill. So, since you are receiving your treatments in the hospital, they are probably getting paid more too. I was really just staggered at that radiation bill, which was a hospital. That is insane, $90,000.0
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Debbi: I started a little early - went "topless" on the 31st. I get the stares too but was getting them anyway in scarves. My daughters insisted I wear the scarf to church this morning though.
Eyebrows/eyelashes: I was so relieved when I did not lose mine. My eyelashes thinned, but I did not wear mascara for 3 mos and was happy when chemo was over and I still had enough that with mascara my eyelashes looked nice. About the time my hair started growing in, my eyebrows fell out - around 5 wks pfc. Thankfully they grew back in quickly and they are starting to look a bit out of control now but I'm going to let them be for a bit. In the last couple of weeks I've lost all of my bottom lashes and many of the upper ones. I can see some of them growing back in, but they no longer look so nice. I was reading on the hair thread that some people lost their eyelashes 3 times. Something about how they are synched - normally eyelashes fall out every 28 days, but not all of them at the same time. But ours are doing that and it takes time to get them off this pattern of all falling out at the same time.
I had forgotten about this until I was remembering how I lost my eyebrows. I was picking a friend up at the airport around the time they had all fallen out when some guy asked me for my phone number. It was crazy. He could not find someone with hair/eyebrows to ask? I think he was on drugs - seriously, I could hardly understand him when he was asking me all those questions and had to keep asking him to repeat what he had said.
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Hey ladies just wondering if anyone having rad. has body aches all over? Don't know if this is from rad., after affect from chemo,or something else.
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Hi Sue- I had lots of aches during Rads. one time I was at the hospital and it cold and windy and I was so so so achy, I started crying in the docs office. She said everything was "normal", I said, "But I feel like a 90 yr old woman!" She smiled at me and said (again!) "Normal." Hope that helps. I also took ibuprofen and did hot bath and that helped too. Big hug.
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p.s. I will really try for Vegas- I would love to meet up. It will be a matter of finances. I'm heading to Dominican Republic next Monday ( I told you guys that, right?). A bunch of girlfriends and I are going down for a week of reading, dancing, snorkelling and sleeping. Ahhhhhhh. (But I'm going to miss you guys!!!)
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sweeney - That sounds great! Enjoy the fishes, I love snorkeling.0
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Thanks Sweeny and have a blast with the girls. I love the water( including lakes) but cannot swim in the ocean, I am afraid a shark will bite my leg off. I know crazy, about the only thing I'm afraid of lol. In three wks I am off to Fl. I am so excited. It has to be warmer than Iowa, today it 20 here with wind brrrr.
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rachel The tamoxifen can cause hot flashes. I stopped my periods shortly after starting chemo but haven't really had hot flashes and thought maybe I would luck out in that regard, but one of the nurses mentioned women have more trouble with them after the antihormonals. I start Tamoxifen sometime in the next month so I'll see. My mom took it for 5 years without side effects so I'm hoping it's like that for me. Anyway just wanted to mention that effexor is supposed to be very effective in reducing the hot flashes.
Carolyn
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I'm up for Vegas! I just watched The Hangover with dh, and I think something like that might happen to us with Lizzy as our leader. ;-) And I want to witness it! LOL
Brows & Lashes - I lost about half my eyelashes during chemo - just in the corners. So I have lashes in the middle of my eyes, but none on the ends. My brows have thinned so much they may as well all be gone, so I am drawing them on every day. I don't mind being bald, but I NEVER go anywhere without drawing on my eyebrows!
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Ann - I'm relieved to know that yours feel out long after chemo. I was looking at myself in the mirror yesterday and practically counting the eyebrow hairs!
I feel like I look ridiculous! The eyelash thing really bothers me. I can put mascara on the few that I have but eventually it gets into my eye somehow and by the end of the day I'm rubbing at it. I'm using lots of eyeliner!Well, today it's back to "reality" I guess for many of us. I feel strange about this new year. Yesterday I sat down and mapped out school for all three of the older kids for the next week. It took forever and I'm sure getting back into a "groove' is going to be hard for them too. Have to work on reading w/ my first grader. Cancer definitely put us a bit behind, although they got their share of "class trips"! Just feeling a bit overwhelmed -- back to reality means back to doctor's appointments and bills that need to be paid.....etc. I found myself EXTREMELY relieved that we don't have naturopath app'ts this morning. I thought that we did but it's not 'til thursday. I didn't sleep all night again for some reason. This not sleeping really stinks.
I haven't taken an ativan in a couple of weeks and I don't want to because I was reading about addiction with it.....4:30 am I finally took a benadryl and had to get up at 7......... But I'm also looking forward to working on my online stores and selling again and hopefully and prayerfully GOOD THINGS for all of us in this new year!
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Lisa- too funny about The Hangover and the BC vegas trip. I laughed so hard at the movie- it was a great escape. If we go and we end up with a tiger in our room, I get to keep it.
Eyebrows/Eyelashes- all mine fell out well after chemo but the interesting thing is that they grew back much faster than my hair. So there's some good news! Also my left eyebrow is almost colourless which means every morning I have to apply eye shadow colouring to it. Urgh. I did an updated hair photo for Facebook yesterday and I'll post it here, (can post from Facebook for those who have accounts). The photo was built on http://www.picnik.com/ if anyone is interested. You can do so much fun stuff on picnik. Also if you do get into my facebook page, feel free to friend me- would love to keep in touch that way too for anyone who's interested. Gosh, you ladies know way more about my private life than anyone on Facebook anyway!:) So here's my shot at creating a link for a photo- check out the coloured in eyebrow...
http://www.facebook.com/photo.php?fbid=480491741780&set=a.428341531780.208092.524301780
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yay! it worked! and I hit 200 posts!! what a day....now i need a nap....:)
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Hi all,
Hope everyone is doing well!
I'm just wondering if anyone felt worse before things got better towards the end of chemo. I finish on Friday but I am just soo tired and find myself weepy lately. Just need a reminder I guess that things will get better. I think the holidays, fatigue, leg pain, kids out of school routine just did a number on me. I'm also wondering if the Taxol could be affecting my mood. Just trying to remember this is temporary.
thanks,
Carolyn
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Sweeney--Could be that my brain isn't working but when I clicked on link--it didn't work. I am on facebook also and will look to "friend" you. Granted not sure if I know your name or not.
Hair/Eyebrows--Yesterday, I mentioned that hair coming in pretty fast--unfortunately, not my eyebrows--I am drawing them on--some days better than others--hoping they come in soon. I lost them during my last couple of Taxotere along with my eyelashes--which are starting to grow but not long enough for mascara.
Cal--I am sleeping like crap also--not sure if Tamoxifen SE but can't seem to sleep all night--waking up off and on. I don't think that I have had a great sleep in months--not counting the drug induced ones at hospital
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Hi Carolyn- I wanted to respond fast to this b/c those were the WORST weeks for me. For some reason the four weeks after my last chemo were the hardest. I felt sick, exausted, ugly, fat, hormonal and overall weak and depressed. It was awful. I think it was most awful b/c in my mind "I was DONE chemo and I was DONE Rads", shouldn't I be better? What was wrong with me? I remember having many crying jags, I'm sure they were a side effect of hormones as well as a complete letting loose of pent up emotion, (that last idea came from my onco who said that what I was going through was completely NORMAL). It didn't feel normal, though, it felt really, really bad. It is temporary. I'm not out of the woods yet,but I look back to 4 weeks ago and I'm a different person completely. I never woke up one day and "felt better"...but reading your msg reminds me of how bad I felt less than a month ago.
My onco reminded me, "take it easy on yourself- you're not going to feel better overnight you know...." I think subconciously I thought I was going to notice some great improvement, certainly not that I would feel WORSE. But I did. For a while anyway. Now, a month later, I'm better than I was by a long shot. A very, very, long shot. So you will feel better.
Just remember- you have a lot of people around you right now saying "Aren't you glad it's OVER?" But they're wrong- it's not over, you still have several months to get back to your normal levels. Keep reminding yourself of that. Because the energy and the "old Carolyn" will come back!
And your newly refreshed avatar is beautiful!
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Re the facebook shot- oops. Thought I could make it work! Darn. Anyone wanting to "friend" me, I'm Mara O'Brien-James, Ottawa. Then you can see that shot and many more of my (biased opinion here...) ridiculously cute children.:) XO
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Hello ladies! Sorry I haven't posted in so long, I was off with family for almost 2 weeks and didn't spend much time on the computer. Then it took me all weekend to read all the posts and get caught back up!
Lizzy I hope you are home from the hospital or headed home soon and I am glad to hear that so many of you are doing well.I had my second Abraxane treatment on Dec 23rd. It went well and I am marveling in the lack of side effects from it. I get some fatigue and achiness in my legs (knees especially) for several days following treatment but overall SO MUCH better then the horrid AC combo. I felt well enough to thoroughly enjoy Christmas Eve and Christmas Day with my family. If everything stays on schedule I will have Abraxane #3 on Jan 14 and my 4th and final Abraxane on Feb 4. Then I will need to see my surgeon again, he was talking about doing another surgery just to check the margins of my lumpectomy area post-chemo. Then rads and the start of Tamoxifen somewhere in there.
I had some sadness over my holiday too. On Dec 27th I had to say goodbye to my darling cat, Janie, who had been with me for 12 years. She was my very first pet and I loved her very much. I think I mentioned here before that she was sick so I knew the end was coming so I felt somewhat prepared but it was still rough. From beginning to end 2010 was kinda crappy so I'm hoping for a better 2011.
Hugs to everyone and here's to a happy and healthy 2011 for all of us!
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Carolyn - I agree with Sweeney. I found that the last 2 treatments were by far the worst. I felt horrible physically and mentally. When I finished my last treatment, my husband and the nurses were all excited and happy. My mom was ecstatic. And they all kept asking me "aren't you excited it's over?" I wasn't yet. I just wanted to go home and lie in bed and cry. The nurse practitioner told me the next week that they know it is going to get really bad toward the end, but they don't tell you that because they want to to keep coming. It DOES get better, though. Sometimes I wake up in the morning and I'm AMAZED by how much better I feel. And in some ways those bad days seem like a dream. Hang in there for a little while longer. Hugs to you!
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sweeney and lisa Thanks so much, that really helps and thanks for being so honest. Sometimes I feel like I'm losing my mind but I know it's everything coming to a head. It is strange that people around me are cheering for me that it's almost over and I'm feeling worse off. I think my thinking/mood is too jumbled from the chemo to give myself a good pep talk so it helps to hear from others who have been there and are bouncing back.
Sweeney - you've got so much hair, you look great! I can't tell if parts of mine are grey or colorless yet, but if it's grey I'll still take it!
jsw I was just thinking of you yesterday and hoping you were busy with holiday stuff. Glad this chemo is easier on you
Carolyn
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I echo the feelings too - everyone kept saying 'It's over it's done!" But to me that was kind of like "now what?" That feeling of being cut loose like everyone says. When you're going thru chemo, you feel as if you have some sort of tangible support system-in your doctor, your nurses, the staff; they're there to hold your hand thru chemo and BC. But then you're like..."done" and you're back to being on your own and it feels weird....
I feel as if I'm more sore (in my joints) and more tired than I was on chemo, but I think that was the steroids that helped with all of that. Yes, it's a long haul and the emotions really hit you. Now that chemo is done sometimes I forget about BC for a little while and then when I think on it again the horror and intensity of the entire experience seems to hit me all over again.
I feel like I'm not looking forward to this summer. That sounds weird, but I feel like June will roll around and that was when I was diagnosed. July came and that was my surgery.....and the waiting waiting waiting which was the worst - for the results and the scans to come back. UGH.
While I dont' notice a lot of my energy being different (I still get tired and now that I'm not sleeping I really get tired!) I do notice that I'm able to run more and longer when i go for a run--
Anyhow -- I'm done with shipping my orders today and all my errands. I think I'll go take a nap since the kids are nearly done with their schoolwork for the day.
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Carolyn--I echo everyone else. I am 5 weeks out of last chemo and although it feels great not to have chemo anymore...I don't necessarily "feel better". I have a hard time with how my appearance has changed through the last few months and like others have indicated--I feel sore and achey. I started Tamoxifen before Christmas and although I don't THINK that I am having any SE--I am having a real hard time sleeping. I started exercising again this past couple of weeks--I used to run and have more energy---hoping that it comes back. I know everything takes time but it sometimes feels that this journey never ends. I start rads next week so I am far from being done. Lots of people around me always keep saying "Aren't you glad you are done?"--I don't feel glad and I'm not done
You are not alone....believe me!0
