Calling all TNs
Comments
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Oh Kathy - what a hoot!
Annie - Have a great trip! My favorite coffee machine, was one that took liquid concentrate. Came frozen - I think from Sweden. No filters, or old coffee and tasted great. With the filtered machines - it's very important to train everyone to remove grinds after brewing, to reduce bitter oils dripping down. Still trying to train DH - but as he brings me my first cup in bed, I'll let it slide
Back to dusting... where the hell does it all come from?
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Opps...
Woo Hoo OnVaca - so glad you get the check off that box! Doing a little happy dusting dance for you!
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Tifj - it seems like in your case it is the eye lashes which never came back the way they were before. In my case, my lovely hair never came back. Yesterday as I was organizing my pics and videos on my computer, I saw some pictures from before chemo, and was astounded, just shocked at how I looked then, versus now, my hair has thinned out tremendously after chemo. I had taped myself on video one day as my hairs were coming out. I was so sad looking at that video.
But you know what I kept on thinking about how this was the worst experience of my life, having no hair, being bald. Then my thoughts went to my many trips to India where I had witnessed beautiful bald village women walking around with children in their laps and not hiding their baldness at all. They put dark black natural stuff to highlight their beautiful eyes, having natural beauty without makeup and they take baldness as something natural to them. It is religious or some belief system sacrifices that they do, giving up their hair.
Whenever I have a difficult issue in life, no matter how big it is, in order to solve it internally, I go to India. I always get my answer there and then I look at my problem differently. Due to the large population there, the circumstances people face, it seems like the villagers are always attuned to nature for solving their problems, somehow their perspective on life gives me strength and a renewed sense of appreciation of all situations. Even thinking about them made me feel better. Check out some videos of bald Indian women on utube. They do it so willingly, giving up their long beautiful natural hair, which they adorn with scented flowers.
I no longer feel like hiding those videos and pictures from anyone and will show them off as a time when I had the strength to fight something.
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Lovely - you are bald and just as beautiful because you are fighting the biggest battle of your life and winning.
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Been thinking about the "brave" issue, and the ever-present hair issues...
I stopped at the chemo suite to say "Hello" to my chemo nurses after my 3 month MO check. I was told that I am "an inspiration", that I am "so brave", that I "Rock!!!" - chemo nurses are the best cheerleaders!!!
Yes, I did have a good attitude throughout chemo, and I pretty much smile all the time (that's just goofy me). Living with a chronic disease, MS, and it's treatment regimen, I think I was more resigned to BC treatment, than actually brave about it. You do what you have to do to get well. Losing my hair was just part of that process. Oh yeah, I cried and cried and cried some more - I just did it at home where they couldn't see me. No bravery involved.
Luckily, I heal quickly and I grow hair fast. I still don't feel comfortable or attractive with this short 'do, but hey, I'm not bald anymore! And with eyebrows and eyelashes now, I'm no longer a "blank canvas".
Now the true "brave" part of this story...
During the local Relay for Life, one of my chemo nurses had her long, dark beautiful hair cut and donated, and her head buzzed for the cause. She was working in the chemo suite that day with shorter hair than mine! Last year, another chemo nurse did the same thing. Now these gals are young (in their 30s) with young children, and very social lives (in contrast to me...much older, empty nest, and my social life consists of my family and my dog - hair or no hair, I'm accepted). Showing up with a buzz cut "on purpose", and not just "because it's a consequence" of chemo treatment, seems awfully brave to me!
Oh heck, we're all brave, but some go above and beyond that description. I just wanted to give them an appreciative shout out.
Chemo nurses... you are inspirational, help us to stay brave, and YOU ROCK!!!
Thanks ~ Shar
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I rang that bell LOUD today and did a little dance! Everyone clapped and the chemo nurses gave me hugs - I agree they are the best!
6 weeks of radiation are up next, not looking forward to it, but it will be ok!
Hope everyone is having a good day!
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Spica16---I found chemo nurses far more compassionate and full of helpful information than those cranky doctors. Double bless those chemo nurses who buzz their hair at Relay for Life. Love them to pieces. I didn't have a bell to ring, but I brought boxes of cookies from the bakery and we had a happy dance in celebration of my last chemo. I didn't think of it until your message, but survivors are an inspiration to those still in treatment. I don't know about being brave; I just got on the "treadmill" and went through all things necessary to kill the beast.
Onvacation---Hip hip hooray. I hope you can celebrate this major milestone!
Eyelashes? 0 Arm hair 0 Lady fur 50% Leg hair 75% Chin whiskers 150% at least!
We made it through the 4th with no problems. Still staying home away from town and irritating tourists.
Here's wishing all in treatment and dealing with SEs easy days with bright outlooks.
And a nice cooling rain to those suffering in the heat, and especially those where the storm knocked out your power.
Jan
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Onvacation: Congrats on being done with chemo. That is an awesome milestone, and I trust you're celebrating in style. Rads are tedious (being every day), and you have to watch your skin and energy levels, but most women find it a relief after chemo. I'm sure you'll sail through.
Sugar: Good news, bad news, eh? Lots of diabetes in my family but so far my sugar levels are fine, so no metformin for me either.
Ladies, I went for a follow-up with my onc today, no issues thankfully. I've now graduated to a new "annual" schedule of follow-up, not sure how I feel about that... good but anxious, kind of like when they cut you loose after rads. (One good thing, I'll see my BS in 6 months and she rocks.)
Thinking of you ladies without power... I know Ontario's Hydro sent crews down there to help. The heat has been oppressive even here. Set a record yesterday dating back to 1955... heck that's before I was born!!
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Congrats onvacation - another chemo grad in our midst. Isn't it aook wonderful feeling not to have to go back for another tx. I have to admit, with all the hugs from the chemo nurses and other patients clapping I had tears rolling down my face. Gotta love those nurses.
Talking of inspiration: a close work colleague of mine went through bc 2 years ago and we were all doing the Walk for the Cure and survivors get to wear the pink t-shirts and she was having a bit of a hissy fit saying she didn't want to wear it and have people pointing to her and knowing she had cancer. Her 12 year old daughter took her hands and in a very stern adult voice said "MUM, MAYBE YOU ARE AN INSPIRATION TO THOSE JUST STARTING THAT CRAPPY JOURNEY - WEAR IT FOR ME"... well we all clapped and cried and she wore the t-shirt.
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Luah is it your medical onc who you will now see once a year? I'm still seeing mine every six months and go to my GP the months in between for a clinical breast exam so I'm being seen every three months. I don't see my breast surgeon or rads onc anymore.
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Sugar: My medical onc said that at 3 years (which I'm almost at, touch wood), she sees patients annually. So that's my new schedule with her. I see my BS in 6 months, and I think she will put me on an annual schedule too after that, until year 5. So between them I'll be seen every 6 months... plus I see my GP once a year too. (I've never been followed by the RO.) So, I guess I'm covered...
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onvacation- Yeah for finishing chemo!!!! You did it!!!!
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There was no bell-ringing at my last chemo tx. Instead, the nurses and staff presented me with a graduation diploma, a small pillow signed by them all, and the best part...played "Celebration" by Cool and the Gang. Everybody able danced!
I couldn't get that song out of my head for a week!!!
!!!~ Shar
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Spica - that is so cool!
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.onvacation- Yeah!!!!! WooooooHooooo. You made it! Congrats!!! :-)
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Congrats onvacation!!!! Celebrate, dance, eat, drink and by merry. You've made it and you're amazing.
I agree that chemo nurses are like angels from heavan. Mine were all amazing and so supportive. When I wanted to quit they were there and when I was crying my eyes out, they dried my tears. They were so supportive for my DH as he'd come to every chemo with me.
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Wooo hooo! Onvacation. Doing a happy dance for you!
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In a recent blood count my PCP suggested I might be pre-diabetic so I've been much more careful what I eat. I've been occasionally seeing Metformin discussed as a clinical trial, and some of you have told of the SEs. What is the connection with BC and is it specifcally for TNBC? Is the trial still taking newbies?
As for losing weight--I just took a berry cobbler out of the oven. Oh lourdy! What a loser I am!!!!! Jan
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onvaca..congrats on finishing your chemo!!! Dancing with you tonight. You should find the rads to be much easier than the chemo and hopefully this will be so for you.
Had 2 employees call in sick today and 1 that just never bothered to show up so I had to do a 10 hr day on my feet today. I find my stamina is just not like it used to be but made it home safely and now am enjoying this fine cabernet. thanks for the great laughs Bernie and Cocker. I just shared your jokes with my family and we are all wiping away tears we are laughing so hard. I Love you guys!
Maggie
ps LE sux
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Luah - A huge congratulations! What wonderful news that you are moving to annuals now. Ladies like you are our inspiration, our strength.
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Shar - have to agree with onvacation, very cool.
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Hello all,
I have been lurking (creepy I know) reading your posts for a few days now. I was diagnosed with TNS in Dec. 2011. I. Had A/C dose dense and Taxotere followed by BMX 5/29/12. I'm going back to work tomorrow. First day of work this year! Im excited and nervous. It has been a very long six months of chemo and surgery. Reading the posts you all have written is very therapeutic. It is comforting to know I'm not alone. The whole TNS thing is a bit freaky. I'm glad I don't have to take Tamoxifen for five years, but stressed about recurrence. Anyone else worry about that? I too would love to have my hair back and lashes and brows. When my hair was falling out after second A/C, my little dog would bark at me when I got out of the bath tub. I don't know why, maybe he sensed my distress at seeing all of the hair in the tub or maybe I looked different to him but I found it peculiar. Also, why is it that the hair on my legs and other places I dont want it to grow back is growing so much faster than the hair on my head? Has anyone tried any of those lash growing products? Do they work? They are certainly pricey. I am interested in the Metformin thing. Is that only for patients with blood sugar issues or is it being studied for TNS like Tamoxifen is used for BC patients w/ hormone positive tumors? Thanks for all of the useful info and especially for the great jokes! The joke about the cat and the budgie had me laughing til I nearly wet my pants. Blessings on all of you. This is a tough journey. We all deserve a pat on the back or something really fabulous!
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Ladies - the metformin trials (or those whose PCP or MO will prescribe it) are being used the same way as Tamoxifen, Arimidex or Femara) and yes, TNs can participate in the trial. There is a discussion thread you may want to check out, including a link to the clinical trial information:
http://community.breastcancer.org/forum/73/topic/765092?page=14#idx_399
I think it makes us TNs feel like we have something to help us after we've finished standard treatments.
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Hi my name is Marsha. I am 62 years old and my husband and mother died of cancer 4 years ago. I was diagnosed in Jan 2012. Had surgery on the 27th of Jan. Stage 11b n0 m0 triple negative grade 3. I had 6 treatments of cytoxan and taxotere. I finished on June 5th, 2012. I start radiation on July 9th, 30 treatments. Ever since the chemo was finished I have terrible joint pain in my shoulders, elbows and wrists. My feet and legs are extremely swollen. They are so bad they look deformed and I have neuropathy. Other than that I did pretty good. The thought of having triple negative is scary. Any input would be appreciated.
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Hi Marshajfox, your feet and legs will definitely get better as neuropathy from chemo does eventually get better. I am two years out, but I still have pain at the bottom of my shoulders. The joint pain which I had from Taxol in my hands was disabling, however, it is pretty much all gone now. Congratulations on finishing chemo. The Rads is not as bad, except for some fatigue and skin burn. Everything is very doable from now on. You have finished the biggest part. Please just one more thing - don't compare other cancer deaths with yours, each cancer, each person is different. I also had TN, but I plan to live a full long life, which I am sure you will too, unlike your husband and mother. But I can iunderstand your worries. Good Luck! Let us know how your rads go.
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OMG, I'm 11 pages behind. (I don't think my ADD can handle reading thru them right now.
) Hope everyone is doing well. I've missed you guys, but took a little break.I had last chemo on 4/17, surgery on 5/18 and for the last few weeks have felt my energy returning. Hallelujah! Like many of you, I was so sick of feeling sick!
I go for my sim for rads on 7/12. I am probably more worried about rads than I was about chemo....because I know more now. I worked about 20 hours a week during chemo but have decided not to do that during rads. I'm hoping that not working will help me manage fatigue and get me back to work full time sooner.
Okay, now I'll go back and see how many pages I can focus on!
Phyllis
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My Calcium serum and PTH test came in and both are within range! It has been a long month. I feel like I can breathe again.
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Hello all. I haven't posted in a while. I was in the midst of treatment and just needed some time to myself. I finished rads yesterday...I rang that bell!! I'm thrilled to be done. My hair is growing back. I've been told I look like Sinead O'Connor (remember her?), Sigourney Weaver, and Charlize Theron who has just shaved her head for the upcoming Mad Max movie. Now if only I could have half of their money!
I've been trying to catch up on the posts, but there is way too many. I just wanted to thank you all for the support you gave me when I really needed it.
To all the newbies: Cancer sucks. Chemo sucks. Radiation was easy for me at least. But it IS doable. I managed it...even after getting pneumonia and spending 4 days in the hospital. I didn't think I was strong enough, but I did it.
I am so ready to put all of this behind me. I will pop in from time to time. Have a wonderful summer (or winter for those on the other side of the world!)
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I have a question, has anyone had chemo pre and post surgery. I thought I was done, but since there is nothing else for them to do for me since I'm TN, my onc wants to give me chemo again. My first reaction was to start crying, I don't want to go through chemo again! What do u all think, anyone?
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Marsha---Welcome to a very warm and knowledgeable group of women. Sorry you need to be here. We have all been frightened by our TN status. My chemo was a year ago, I had many miserable side effects (SE), but not the sort you are suffering. I've learned that just about any SE is possible and varies from person to person. I've also learned to need to make loud noises at your doctor's office to make sure you get the help you need and deserve.
Your loss of both your mother and husband has to be devastating. I am so sorry for your loss, especially in light of your own diagnosis. Come back to this site often and get the support we offer each other. Jan
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