Calling all TNs
Comments
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Okay, so I have now changed my Avatar to my real photo taken at my son's wedding reception. I put this here to show off my gorgeous wig which I especially bought for his wedding on June 18. I never thought I would like wigs and had donated the previous 5 I had bought before this. I finished my chemo on December 28, 2010, so by June my hair is only about 2.5 inches long. I wanted to look gorgeous so that 20 years down the road, when looking at albums, did not want the photos to remind me of cancer. I paid like $225 for this gorgeous real hair wig, and it was worth every penny. It is better than my own hair can ever be, beautiful long curls. So, ladies, you can have fun with your wigs, I know it gets hot but you get used to it. I wear one to work every day which is shorter hair. I am keeping this long hair one, and wouldn't mind wearing it to another night event, as it is gorgeous.
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I also have a great wig-better than my own hair, which i so desperately miss. I have maybe 1/4 inch now. Last chemo was June 3. I am a school counselor for K-8 and I did not want them to know I was sick. I told my co-workers though and they were great. I got a short cut when I knew I woud be losing my hair soon and then came back on a Moday with the wig. It was lighter colored (platinum blonde instead of golden blonde/brown) and shorter. I got lots of stares and questions from the little ones. I just told them it was my new look and they accepted that. Even the teachers were not sure if it was a new hair dye or a wig. I felt like such a fake, but was not ready to explain to 500 kids. The middle schoolers were polite and a few even commented that they liked my new look. Some knew because they go to my church, but not a single one ever asked if I was sick or if I had a wig on, bless their hearts. But now that it is summer I cannot bear to wear the wig much. I go topless at home and wear a ball cap to radiation (no one knows me there-I drive 90 miles for treatment each day). I wear the wig for church or other local events. Not sure what I will do when school starts again-probably will wear the wig until hair is long enough to go public. A ball cap seems too casual and hats are not allowed by students. I have not done well with the scarf look. I end up looking like a pirate or a biker chick or a pastry chef! It certainly is a persoal decision. I've gotten more brave going out with the ball cap around town but am still very self-concious. The hair loss was worse than the cancer and surgery itself and that is so vain and stupid, but that's how I felt.
When I first met my oncologist he called me his "fragile" patient because I cried through the whole appointment and he couldn't figure out why. By the 2nd appointment I was asking lots of questions and questioning everything. He realized I was not so fragile. I made suggestions to my treatment and sometimes I was able to change things, based on things I had read or on how I was reacting to chemo and Neulasta. I asked if I could go without the shot since my WBC's were so good; that wasn't an option, but reducing it by half was. That improved my SE's immensly. I asked if I could quit the steroids for the days after chemo and that was also approved. I wasn't sleeping and was eating all the time and I ccouldn't see what benefit they were. So that was stopped. He hadn't ever had a patient ask things like that before but he was willing to listen and change things if it woiuldn't hurt my treatment. We laughed at my last chemo about how "fragile" I really was. Doctors don't always know best. And if you are not getting what you need, see what other options you have. That is why I am driving 90 miles for rads, even though the closest is 25 miles away. I did not trust that the RO had my best interests at heart.
Wishing everyone a cool and relaxing and SE-free weekend!
Kristy (aka huskerkkc)0 -
Thanks so much. Teka.
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Lovely indeed. Looks great, Lovelyface.
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Hi everyone, hope you are doing well. Titan what happened with the wedding dress?
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Please say a prayer for a TN friend of 40 yrs that is in the hospital. She has mets everywhere and weekly chemo. She is very fragile and suffered a seizure. She is emotionally very strong and we are the ones that need reassurance. Thank you.
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Please tell us about your friend Ruth. Was she someone we know from the boards? You both have been friends for 40 years, and you both got diagnosed with TN? How long after diagnosis has this happened, I mean the mets everywhere? I am so very sorry to hear this, I hope that she can do a newest trial drug or something. What about the PARP, can she take part in that? Is that still out there? I was told to keep my mind off so I have stopped reading about newest drugs, clinical trials, etc.
MBJ, I haven't seen any of your posts lately. Are you doing Okay. You are being missed here on the boards lately. Anything more on Addison's disease?
I am still recovering from my bad doctor's appointment. Everyone have a great Sunday, on the West Coast as the whole day is still ahead of us.
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Prayers going out for your friend, Titan.
Happy Sunday Everyone.
I had one of "those" days yesterday. Had my own Pity Party. I finally took xanax to get some sleep and woke up this morning to thunderstorms. But feel better today and able to appreciate the rain. My veg. garden will be happy, too.
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Lovelyface, I love your new avatar! Nice to see your lovely face, lol! She was dx a year before me and had mets within 6 months. She did parp a year ago..and unfortunate as it is, we only have chemo. I heard she had the seizure because its in her brain...she also has bone and lung mets. She is not on our boards...she doesn not know the seriousness because she asked not to be told. She was my high school best friend and it hurts my heart to know she is going to hospice today. I wish it was me instead of her. She has 4 (grown) children. I just can't quit crying. I need to go hug my dog.
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I am so sorry to ask you all these questions which has apparently made you so sad, Oh! dear, I am so very sorry. I am glad to hear though that she has grown children and not young children. This disease is horrible, just plain horrible, I wonder sometimes what God must be thinking. For some of us, it is a disease which metastisizes, it just doesn't make any sense. I am going to pray for her that she doesn't suffer even for one minute, that she is at peace and in comfort during her stay at the hospice. Just send her love, my dear, and please don't wish that it was you instead of her. We love you here on the boards. It seems like I have known you for a long time. Take care and hug your dog as much as you need to, to take your mind off things which are out of your control.
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tnbcRuth - I am so very sorry that your friend is going through this, and for you as well. This disease doesn't just affect those of us who have it, but everyone around us, and it sucks. I will keep her in my thoughts, and hope that her days in hospice are pain free and surrounded by her loved ones. My thoughts are with you as well, as you grieve for her.
Lovelyface - such an apt user-name! You are such a lovely woman!! I am again so glad to hear your scans were good.
MBJ - thinking of you and hoping you are doing well.
Titan - so, how did the dress go? I hope they were able to exchange it!!
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Heat wave has broken here, thank goodness! We might even get some rain today! Going down to Boston for some dinner in the North End tonight. Have a great day everyone :-).
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Lovelyface ...you look amazing. My daughter married July 2nd and I had my hair andabsolutely loved the day.
christina1961 I like your spitfire. I have had to cut down my work drastically. As a private therapist it is weird. I do not want to tell clients but don't not want to be around anyone ill- also I will try to tell people my wig is a new hairdo but some will guess and I guess I just have to deal with it. I agree there may be a point when I end up wearing a ball cap and saying this is me. I can't see doing that at my job. I am just going to have to do what I advocate other people do and that is stand up for myself. And yes, we took out a home equity loan to get me through this and I hate it. Working for oneself has it's downfalls. Stay hydrated as you work outside in this icky weather.
tnbcRuth So sorry. Prayers sent.
Everyone...I love reading all your wig comments. Gives me strength.
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Oh Ruth, my heart is breaking for you and your friend. It is one thing to watch the people we care about slip away but quite another when we must face our own mortality as well. This must be so hard for you. Please remembe rthat even though we have never met, we do know each other quite well. And care deeply about each other. We are here for you during such a difficult, painful time. Let us know how you are doing. Hugs and prayers sent your way.
Navy
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Suze - Oh no, I did not choose the User Name "Lovelyface" because I think I have a lovely face. Let's just say that many of my User Names have the word "lovely" in them. I think the real long hair curly wig is what makes me look lovely but thanks all for the kind compliments. I do think that the sari I wore at my son's wedding was absolutely out of this world, it was super gorgeous. And that too is making me look good. I am glad I spent all that money on myself at my son's wedding, the photos are priceless.
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Here's a lovely PowerPoint that some of you may enjoy. I converted it to Quicktime format so hopefully it's viewable for both Macs and PC. It is NOT my creation. I just thought you might enjoy it.
Hope you can view it:
http://albums.phanfare.com/isolated/PhorPhQf/1/5213419
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Thanks Heidi..for the video..alot of truths there friend!
Lovelyface...nice to put a pic with the name...and you are lovely.really....you look wonderful! I'm glad to see you happy..good thing!
Ruth..that sucks about your friend...sending warm thoughts to you...and your friend...she is lucky to have such a good friend..
Ahh..the wedding dress...well..they exchanged it...no problem..my daughter and I and the store personnel smiled through our gritted teeth..fake niceness..but we got it done...They said once my daughter found the right size that we could just take the one off the rack...I said..(through my smiling gritted teeth)..oh I don't think so...why would I want a dress that has been tried on and has armpit stains and make up on it? Anyway, a new dress is on the way..I just hope it gets here before the wedding...
With my son's "bird" finger surgery and dealing with the wedding business I'm almost glad to go back to work tomorrow...
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Ruth, so sorry to hear about your friend. Big hug to you both
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Ruth~~~~ I just wanted to give you some comforting words. Not only are you grieving for the wonderful strong, and brave woman that your long time friend grew up to be..... but I'm sure you are also grieving for that little innocent girl that you enjoyed so many childhood memories with. Just remembering all the fun times together as children playing and never thinking that any of this could happen to both of you. Growing up together and talking about boys and giggling all night at sleep overs and parties. Remembering how much fun you had together, living life so freely when things came so easily and laughing together until you both fell down into a fit of giggles. And now this precious woman has grown and remained your friend throughout all of life's ups and downs and the two of you must have faced good times and bad times together. But your friendship has been constant and strong. It's a rare treasure to be blessed with that kind of friendship. So cherish every moment you can with her even if it's long distance. She knows you are in her heart and she is in yours just like it was meant to be even as children. Please know that you have so much love and support here for you.
I also have a childhood friend that was diagnosed with breast cancer two weeks before me. We have always remained close through all these years. In fact, she is my longest time friend having met when we were 5 years old. So I can closely understand some of what you may be feeling. This cancer gig just totally sux!!!
Sending you so many hugs!!.............. Kimala
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Thank you for the good thoughts and words. Kimala, you are absolutely right.
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Kimala and tnbc Ruth - you both are very lucky to have such wonderful and strong women as your childhood friends. You surely are blessed.
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Lovelyface: you are HOT!!! Let me make you feel even better. I was thinking this pic must be before chemo. Never feel bad about asking another ONC his/her opinion. I have my regular ONC and my back up ONC stored in my cell phone. If I can't get into one I will go to the other or maybe them both if you get what I mean.
TnbcRuth: it's hard. I can't add anything other than that. IT'S HARD. Keep her in your heart, stay strong, and try to move forward. She got the opportunity to raise her kids. That's what weighs on my mind often, and that is way I am so overly concerned when it comes to my situation.
I am beginning to hate the word CANCER.
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Hey ladies since it is so hot I did something last night.
I took a cup of blueberries, ice, and almond milk (or whatever milk you like) blended it all together and placed it in the freezer YUMMY ICE CREAM. Lowfat and good for us.
I fooled myself I will be doing this more often.
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Good Morning,have been away for a few days camping and have lots to catch up on.
Ruth I am so very sorry to hear about your friend,it makes me feel so very sad for all of us just the uncertaintly of it all.I am happy to hear that your friend has such a strong postive outlook on life that must make it much easier for her family.
Lovely face I too think your pic is beautiful and that is a gorgeous wig.
Titan glad to hear your son came out of surgery ok and that you were able to exchange your daughters wedding dress.
For all going through crappy SE sending postive healing thoughts your way.
This weekend while I was camping a met a lady who was also a TN sister she is doing great and is now 5 years out just thought I would share that postive news with everyone
Hugs Kymn
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Titan - yay on the dress and the surgery! I can't wait to see pics - from the wedding that is ;-).
Lovelyface - oh, I didn't mean to imply that is why you chose your name! Just that you truly are lovely - that sari is definitely gorgeous!!
Kymn - hope you are starting to get your energy back. You sound good :-).
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This Xeloda is kicking my a$$, ugh. I keep getting headaches - not migraines thankfully - but they are still annoying, and I am drop-dead exhausted!! I tried to set my alarm this AM to get out early, and don't even remember turning it off. And by 2:00, I just feel like I've been up 24 hours straight. Ugh. No hand and foot problems yet, thankfully.
Feeling cool in the NE - have a good day everyone. I'm off to snooze before my doctor appt.
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I'm home to mow the lawn and clean up the mess I left cooking for the party last week, and I think I've caught up with you all.
Rella - I don't know of any foods that boost WBC, but I know that having a protein deficiency can cause people to not produce enough white cells, so the only thing I can suggest is making sure your diet has adequate protein.
MBJ or tifJ, I'm not sure who asked but Addison's disease is a deficiency of adrenal hormones. It can be primary or secondary. Primary is when the adrenals don't produce enough hormones. Secondary, is when you've been on steroids for a long period and then they're stopped. Taking steroids, stops the adrenals from producing them, so sometimes it takes time for them to kick back into producing
Titan - hope your son is doing well and if he has a brace, he has as much fun with it as I did. I severed a tendon in my index finger a couple years ago, and had to wear a brace for almost 3 months. Every guy who asked me "what happened" I looked at dead serious and told them "I broke it doing a prostate exam". I wish I took pictures of the looks on their faces, but it was the butt clench they all unconciously did, that was priceless.
tnbcRuth, thank you so much for the Lyrica info, and I'm so sorry about your friend.
Suze - hope you feel better soon
Lovelyface - sounds like somebody needs a new doctor!!! One of the things I don't like about my Onc. is that she knows absolutely nothing about me as a person. (Am I married, do I have children or a support system, do I work, do I have any other responsibilities in my life. Nada, nothing. She just found out I'm the sole caregiver for a frail, ill Mom, because my cousin decided to give her some hell, lol) I know I'm old school, but I can't imagine that I could have been effective for any of my patients without knowing them as a person.
Heidi - loved the pictures. Grew up with horses and swimming bareback with them was one of our favorite summer passtimes.
Mccrimmom- I'm sorry for your husband not being understanding when you need it, but thank you for reminding me why I'm happy to be divorced!!!
Painting - thanks for all the tips. Personally, I have 4 different wigs. A redhead, a light blond, a darker blond and a brunette. Hell, if I have to have cancer......dammit I'm gonna have some fun with it. I went out last week with one of the blond ones. A girlfriend came up and remarked that it looked great and that I looked like Jaclyn Smith. One of my male friends disagreed and said that he thought I looked like Farrah Fauccet (?sp). Quick as a bunny I looked at him and said, "if you don't mind I'll stick with the Jaclyn vote, Farrah croaked!" Irreverant....yes.....but we all had a hell of a laugh!
I had my "Shave the Head" party last week and it was a great success. We even had the Boob cake with the sign that said "Stupid Boob" stuck in the R- breast.
A question please ladies, what are "tumor markers"?
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kathrynn - glad to hear your shave party was a great success! I need one of those boob cakes, just cause, lol.
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Had a MO appointment today. My doctor said I looked too good to be on Xeloda, lol. She thinks we may up the dose - sheesh! - because she wants me on the largest I can reasonably tolerate. We'll do another cycle then reevaluate. I'll be starting both Zometa and Metformin next week. She feels there is some merit to Zometa, even for just bone mets, and it is only 2x a year. She also thinks the Metformin data is compelling, and is willing to give it a shot. She even mentioned the beta blocker that has gotten some press recently, but I'm pretty sure she'll only put me on that if the Avastin ups my BP. I'm ok with that, my BP trends low anyway.
She's not concerned about my shoulder, it is slowly feeling better and would have shown up on my recent CT scan if cancer. The little thing on my scar line is likely a stitch, but hard to tell, so it is a wait and see. It isn't getting bigger, may even be getting smaller. I'm cool with that.
I really feel my MO is trying to squeeze as many percentage points out of me as possible, something I truly appreciate. I'm trying my best to do my job - diet and exercise!
Have a great night everyone!0 -
Lovely- you look it! I'm glad you felt beautiful.
Titan - so glad you were able to exchange the dress without coming to blows. It must be nice for you both, to have that behind you. Hope your son's finger heals well.
Suze35 - sorry you are feeling punk. Wonderful that you have a MO you trust.
Sending you energetic vibes.
Ruth - Sorry for your great loss.
Wishing everyone a great tomorrow!0 -
All of you sweet ladies, thank you so much for your kind compliments, it truly makes me feel good. I took a lot of effort to dress up and look great even with all the ugliness of the disease, and all the extra things such as the nice clothes, wigs and accessories helped me be my normal self. I hadn't looked this good even before the diagnosis, so it was a truly blessed day. And Yes, we can still be super gorgeous during the treatment and afterwards too, there is no doubt about it. Actually, I feel that chemo somehow improves our system in some aspects. I did have a slight skin color change during my treatments, but now 7 months after, the coloring has returned. Sometime this week, I plan to go to work, without any wig. I was almost going to go without a wig today, but saw some grey hairs sticking out in the front, so decided to touch up the roots, before I go. It feels really bare not having my long hair, but this very short hair feels liberating and it is afterall my own now. I think I can do it, although it does require some courage. I am sure many will ask me whether I had a hair cut. My hair is about 2 inches all over. I haven't had it styled, scared they might cut off too much. I plan to wear a hairband and long earrings, just so that I don't look like a man/boy, and look feminine.
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Suze - your MO sounds awesome!
Lovely: I had long hair too (and miss it), but so many people compliment me on my shorter look, I figure I'll stay this way. So much easier!
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hi everyone, hope you all are having a sweet day.....
Suze, I know how you feel, Xeloda is draining me of energy, too. A little nausea, but mostly just the dragged out feeling you describe. Just started day 2 of cycle 5, and I feel like I have worked all day, and I haven't done a thing lol
Ruth- so about your friend, we are hear to listen and comfort you. You are in my prayers.
Kathryn-never heard the connection with protien and WBC, and I have gotten so I eat less and less meat, so I am going to up my protein intake and see if I get any results. I don't know alot about tumor markers, either, so it will be interesting to hear what others have to say.
Titan-good news about the dress--lol I could picture the whole scene as you described it, oh to be a fly on the wall! Good for you for standing up for a new dress, you pay enough for them, you want to be the only one that has had it on!
Fighter- the shake sounds great! I love blueberries.
Kimn, BernieEllen and Luah, nice to hear from you, been wondering about a few people. Anyone heard from MBJ? I know she hasn't been feeling well, I don't jump around on too many threads, so just curious.
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