Calling all TNs
Comments
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Tumor markers went down, and my hair has a faint part. Today, life is good!
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Yeah OBXK. Excellent news! Congratulations!
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Everyone, thanks for sharing your happiness at my good news. It feels really good.
MBJ - Addison's disease? I will have to research and find out about this one? How did they even get down to the name of a disease? What are your symptoms? Hope it gets resolved positively soon. Sorry to hear you are not feeling your best.
Stupidboob - Sorry to hear about the heart situation. Funny, my nurse told me the same thing, that the amount of taxol they give us is very small compared to the amount which actually causes heart problems. I hope we are all not walking around with damaged hearts from the chemo we have all taken. The amount of drugs they give is according to a person's weight, isn't it? I hope you feel better soon.
Suze35 - I had a little pink zit like thing next to my scar line for sometime. I didn't think that it was a stich pop-up, rather, the skin heals that way. I had the zit like thing for quite some time.
Titan - Hot surgeon? You go girl! I like the idea of reading about Tantric Sex much much better than reading about stupic Cancer.
OBXX - Congratulations on having low tumor markers. Keep it there.
I myself had a really bad medical appointment with my Oncologist today. I had a call first thing this morning, the Onc. office asking me if I still needed to keep my appointment since my doctor had already given me my petscan results. I said, of course, I have been looking forward to this 3 month appointment. Anyway, the Onc. was rushed as he entered the room. He did mention that he didn't think there was anything to talk about that's why he had the office call me this morning. He then said to me that "I was the type of woman who concentrates on the one word in a sentence and does not read the rest". He meant that I myself had created this whole drama about having bone metastisis. Remember, he is the one who had suggested about bone metastesis to me when I was having the arm pain and numbness. He said he had given me the petscan only because of my emotions. Then he asked me about my conversation with the surgeon about the little enhancement on my R. Breast. He asked me whether I wanted to remove both my breasts. I was shocked to hear this. He said he was not an expert in the field of breast, therefore, I have to go see the other doctors. I told him about a recent fever I had had which went as high as 104.3. He asked me if I saw the Primary Care doc. They don't care to know everything about a person and treat the person as a whole. I know in my heart that my fever was connected to the pain in my arm, as I was feeling pretty bad. He then said that my arm pain since I also have numbness in my finger, is definitely not coming from Aridimex or Zometa. And that it maybe coming from Taxol. I quite disagree with him 100%. It is pretty apparent to me that Aridimex greatly reduces estrogen in a woman's body. It reduces it so unnaturally. And when estrogen is low, all sorts of joint pain, arthritis and numbness etc. arise. As simple as that.
My God, I am so sick of doctors. If you are a smart woman and ask them questions or ask them to check this and that, they think that you are emotional. I had actually taken a little treat for him (cashew nuts & chocolate) because I felt that he supported me through my petscan. But everything he said today was just plain awful. He is discouraging me from saying things which bugs me, just like a strange pain for an ex-cancer patient is huge, isn't it? But according to him, he did the petscan just so that I could be calmed down. Honestly, when I was having the pain, not even for one second did I think that it could be metastasis, until he suggested it to me.
Today's appointment has made me go into my little dark hole with my tails inbetween my legs. Because I am so thorough, just as I am with other things in my life, he thinks I am emotional. I just don't know how to communicate with people anymore these days. Wow! Wow! Wow! The world sure has changed so much, and sometimes I feel I don't belong here anymore.
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Lovelyface, So sorry to hear your dr was being like that to you. My onco told me thursday that he thought I would do well thru chemo, which I think I am, however my anxiety was out of control. That's no big surprise to me at all, I'm now medicated on anti-depressants and will take a xanax before my appts, I take one of those almost everyday. However, it's my husband who is driving me crazy. He just won't allow one not so positive thought come out of my mouth without lecturing me and telling me how my anxiety is not getting better and I sound like a nut job at the dr becuase my arm hurt and I was worried about mets. Dr said tennis elbow as I do the elipitical and have for quite some time, anyway, hubby was having an emotional day yesterday and it came out as cruel to me. He was fine later when he processed his feelings but really, people not going thru this crap really, really need to think before opening their mouths!
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Still feel week and on pureed bfood sicne my hospitaization last Friday for WBC of 1.4 an opportuniistic infection. Tried to work this week was sick.HAve bad nmouth ulcers. they will reduce my chemo amount this Firday.
Figure my hair will be gone on Monday...don't have a fondness fro my wig..things of calling it Anastasia so I can nick name it Nasty...or looking for a French name....ISEULT,MARJOLAINE, SYBILLE,FIFI,ANASTAISE:, ,, AMALINE: Am.ATHENAIS:....a A
Don't know what but I need a name ot make mea little more connected.
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Paintingmywaythru: I went to a place where they had a wide variety of wigs, took my daughter and niece (very critical teenagers) and they helped me choose one, and I'm really happy with it, and everyone tells me how good it looks (genuinely)...Instead of hating this one, any chance that you could try for a better one...preferably not ordering on line, but going to shop to try it out..it makes all the difference, and so important that it makes you feel OK...
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Lovelyface,
Sadly, you're obsessing over BC. Please do something just for fun this weekend.
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mccrimmon324 - you said it right, that people who don't have to go through this crap, shouldn't open their mouths. I am now thinking of getting another Oncologist.
Did you read the story about the Breast Surgeon who had a DMX just because her mother was diagnosed with BC a second time. The 83 year old mother had a second primary after 13 years, however, the cancer had spread to distant lymph nodes before it was caught by MRI. It was not caught by Mammogram. The surgeon thought that such type of cancers runs in families, so she decided to have a double Mastec.herself without even having a BC diagnosis. So you see, how one with cancer has to be on top of things, and even if she is, even that is not enough to catch it early enough. So what is wrong with us being on top of things when our very lives are at stake. I really think that I should write a note to this Doctor and tell him how I feel everything he said was so not right and that I will pick another doctor for my care. I don't think that I am obsessing over BC. I have gone through the treatments successfully and am now being very careful doing what is in my hands, which is to have doctors check me if I get a strange, highly disabling pain and numbness in my arms and hands. My pain was so excruciating which had come on suddenly was definitely a cause for alarm. People who are saying such things hurt us because they have no clue what this disease is like.
Imagine getting a phone call which will tell you, whether the next several years of your life will be filled with misery and pain and even death. How many of us can relax and get such a phone call calmly? We are all humans who have feelings and emotions.
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I did go to several great wig places, my insurance pays..it is self pity. My friends votedon the 3 best choices. It is a wig...I just feel sad about it. I am finally feeling my mouth is better but it has been quite a haul. On the bright side the hummingbirds, cardnials and goldfinches and purple martins are at the feeder.
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Titan-good news on your son, praying everything continues on the right road...
OBXK-wonderful news, that can make your days ahead a little brighter, hopefully not hotter (lol). And my hair is about 1/2 inch long, this is my 4th (I think) time growing back my hair. Bald has it's benefits, but waking up with hair touching your face is a great feeling!
MBJ- I do hope you are feeling better.
Fighter_34- I am with you on pink. After over nine yrs, I have soooo muuuccchhh piiinnnnnkkk.... I haven't purchased anything pink in years because people have given me so much of it.
We just got home from our local annual fair parade, lasted about 80 min. I have lived here all my life, but worked on Sat for 20+ yrs, so it was a pleasure to watch. Had about 8 or 9 high school bands, my favorite part I think
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Hope everyone has a peaceful SE free day!!!
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Just want to add this...
Haven't written. Have felt lousy trying to go back to work. Thought I was a wimp. Doctor said I was sick again. I have wicked headaches. Doctor even agreed medicianal marijuana could help my appetite, but she can't write in MA. I have a house in RI and know some docs so I am working on it.
Jsut beginning to eat pasta-if tiny becuase of the mouth ulcers. Very sad I am losing my hair. Have to give my wig a name...it is lovely but I have not grown to like her even though she was the best of all the choices at several stores...maybe Anastasia or Penelope or Clarissa. I don't know. I have to find a way to engender myself to her...
LADIES: Cleaning for a reason from the American Cancer Society will send you a free housecleaner 2 x a month if they are in oyur area and you have cancer. Please check...the website
cleaningforareason. I got a call today offering 4 complete 3 hour house cleanings as a courtesy form an agency that only service oncology clients. Also consider doing their color my beautiful program. People from major make up companies help you lookoyur best and give you lovely makeup...I ahven't done it yet but the Social wroker encouraged it. I also am getting a free massage tomorrow form the New England School of Massage in the Bosotn area- theytrain skilled therapists how to work with oncology patients. Find oyur resources...my town will give me 500 toward any alternative therapies including massage for each calendr year and unbeleiveably they will reimburse me up to $2500 per calendar year for any copays, Rx's parking, ensure bills, etc, anything related to medical treatment. This is a foundation that left money in my town, but when I went searching I found hte Ellie fund htat alos does cleaning , rides,drops off meals, but it is local ot Boston. My town offers abreast cancer support group of 6 people -2 are triple negative like em, a caregivers support, rides to anything cancer relaated, and a caregivers support meeting
There are 2 scarf plces theat send you free scarves- once is silk dupioni...a wonderful fabric. They are in France and will send world wide... they normally cost 72.00 for them. One place is in Wisconsin so if you google something that include free hats for chemo patients Wisconson you will find it.
So I found as a social worker myself I googled and got a lot of resources. It I hadn't looked no one would have told me. I told the oncology social worker about several. SHe knew of a few but I send her a list of everything I learn.
Hope this helps someone.
And the American Cancer Society website lists all the places with yoga, support groups,make-up seminars, etc in your area.
Stay well.
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Lovelyface,
Good luck with MO.
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Lovelyface,
I am sorry you had that experience with your oncologist. I too, have had numbness in my left hand (index and middle fingers) since the second round of chemo. My onc said if it doesn't go away eventually he will send me to a neurologist to see what is going on. I read somewhere that carpal tunnel was experienced by some taking taxanes - so I blame the taxotere. It drives me nuts. I did have numbness on the lower half of my face but that has disappeared recently. (Last chemo was 6/13 - 6 rounds of TAC.) I may be having more chemo and I am concerned that the hand numbness could get worse, but more concerned about the cancer.
Paintingmyway,
I am in the humid southeast and have an indoor/outdoor kind of job so I shed the wig after about the first couple months and took to wearing a ball cap. My grown daughter always encouraged me to wear just a ball cap - she is funny - she said, "mom, the wig looks like you are trying to disguise something but if you wear a ball cap, it speaks 'yes, I've had cancer, leave me the hell alone!'" I found this is absolutely not true, as I have had strangers come up to me and encourage me - and also a few of the women in our breast cancer support group wear wigs that I did not know were wigs. But when I remember what my daughter said, it always makes me laugh. I think I see a little eyebrow growth today but may be wishful thinking.
Please don't feel like a wimp - everyone is so different. I am also self employed and have worked throughout all of this but I took about 8 days off after each cycle of TAC. I'm about a week out from uni MX but have a LOT of work scheduled next week - very nervous about my ability to do it, but could not stand to lose more income as I am eating up my very meager retirement account as it is. We are all different - my sister had TAC but did not have nausea - I had nausea the entire time, got to where my anticipatory nausea struck as soon as I neared the hospital on chemo days despite all intellectual understand of it. I never had mouth sores, but my sister had them throughout. -
Lovelyface - I'm so sorry your MO isn't more responsive to your needs. As a worrywort myself, I can empathize with your concerns. We do need to actively try and move on, but sometimes it is just so hard. I'm not so lucky in that I get lots of scans due to the stage of my disease, and my doctor is always sympathetic to my concerns. I wouldn't hesitate to find a new doctor if I did not feel like she was a good fit.
mccrimmon - My doctor knows how stressed out I get also, but she has the graciousness not to comment on it. Doesn't stop DH from doing it though! I can empathize.
Painting - boy did I hate my wigs. They just felt wrong to me. I have two lovely ones that my hair dresser styled for me (and he's a drag queen who performs in a show, that man KNOWS wigs, lol), and I was still self-conscious in them. I think what makes it worse is the lack of eyebrows. I went almost completely with scarfs myself. I am glad to hear your mouth sores are slowly improving. Don't be afraid to get some fluids at the doctors office if you need them!
OBXK - yay on the part!!
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We had RAIN this morning!!! I was so surprised, wasn't expecting that! It will be another 100 degree day, but the heat is breaking tomorrow, so I have low-80s to look forward to next week. Sigh, FINALLY!!
Have a good day everyone :-).
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I hated my wig. Her name was Miranda and she was expensive. I wore it probably 10 or 15 times. I felt kinda mannequin like in it. When I wore a scarf or ballcap I felt like a fighter. Strong and ready to kick cancers A$$ not matter how crappy I felt. So do what feels good to you. Scarf,cap, wig or even topless......Stay comfortable with yourself.
And as far as Doctors being/acting poorly. You do not have to put up with it. You should be able to leave their office feeling confident that they not only know their "stuff" but have compassion for you and your family and what you are going through.
Just my two cents
Navy
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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) -
Lovelyface = lovely avatar.
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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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I dread bridal stores!
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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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tnbcRuth,
What a helpless feeling when a loved one is suffering in the hospital. I'll keep her in my thoughts.
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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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