Calling all TNs
Comments
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I just listened to part of Mary's music- it is absolutely amazing. She was tremendously talented. I think I have cried more this week than I have during the entire past year.
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Heidi, I'm leaning toward contributing to LJ's benevolent fund/son's education, since I remember she was worried about expenses.0
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christina - do you have the link for Mary's music, please. I am not sure where to start looking for it.
Thanks.
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Mary's music: http://www.maryjahn.com/#!__listen0
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Sorry ladies, I am embarrassed to see my very long, bolded survey. I didn't realize it will be so huge.
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Lovelyface,
It's easy on my eyes! I like larger print these days.
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onvacatin: I live in Houston and could not go to my choice of doctors or hospitals due to insurance issues. I was at one Oncologist before I ended up at Ben Taub and I have to say I had THE BEST treatment from Ben Taub. The 1st onc had the same recommendations as Ben Taub I have also spoke to other patients from MDA and my treatment was the same give or take. Most Dr.s take the standards from MDA I have spoke to a few onc. and it all seems the same no matter where you go. I do however believe your onc will have is own style in what tests will be preformed after you are done chemo, rads etc.... I had a BMX ooph, and recon at Ben Taub .... today I am healthy my boobs look great and I know I got the best medical attention that could have been provided to me. From what I have read this has been a terrible couple of weeks on this thread... but don't doubt your treatment unless there is something that has happened there that has made you uneasy.
I am so sorry for all the wonderful women that have passed... my heart truly aches.
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Remember these questions are about your lifestyle PRE CANCER DX-At least 5 years previous. JUST COPY AND PASTE ONTO BLOG REPLY. MAYBE THE RESULTS WILL BE INTERESTING ENOUGH FOR RESEARCHERS TO FIND OUT WHY THERE IS SUCH A THING AS TRIPLE NEGATIVE.
1) Age of DX - 50
2) How was tumor discovered? putting on bra
3) Alcohol Consumption per week and type of alcohol - no alcohol in past 27 years
4) Smoking Consumption per day and type of tobacco - quit smoking 27 years ago
5) Child Bearing and at what age - 15 - one child
6) Did you nurse your baby - yes for about yr
7) Stress levels either from family or work -very high stress in relationship and job
8) Exercise- Hours per day and type - weekend warrior (walking) at diagnosis - but strenous exerciser from age 25 to 45 3-5 days week, running, cycling, weightlifting.
9) Any other cancers dx'd before BC - no
10) Rx drugs taken and what kind and for how long? Asacol 15 yr, took SSRIs briefly off and on during past 5 years, antidepressants in my 20s, BC pills in my late teens, 20s, up to about age 33
11) Diet - 4 years, only fish, shellfish, no meat, too much sugar, some fast food
Dad- prostate, esophageal cancer, mom, lung cancer,sister ILC strong ER+ BC (history of HRT for many years) -BRCA NEGATIVE
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OK, I think I am going to donate to LJ's benevolent fund (since she expressed a concern over expenses) and Mary's BC.org (as per her husband's suggestion). IMO, I think this would be what each woman would have preferred.
We can still look into the limestone plaque that Sarah (LJ's daughter) said she could obtain.
I think this is the easiest, most expeditious and equitable way to honor the passing of these three great women (I already gave to Suze's Amer. Cancer Fund) and the accounts are already set up.
Hope everyone feels similarly....?
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Sounds good to me, Heidi.
Linda
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Thanks for the replies as far as my treatment selection. I think I am just getting more anxious the closer it gets! I am ready to kick this to the curb!
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1) Age of DX - 42
2) How was tumor discovered? self exam
3) Alcohol Consumption per week and type of alcohol - 1-2 drinks a month
4) Smoking Consumption per day and type of tobacco - smoked 5-6 cigarettes a day from ages 18-30
5) Child Bearing and at what age - 2 boys, at age 33 and 38 (IVF)
6) Did you nurse your baby - yes, both
7) Stress levels either from family or work - moderate from work
8) Exercise- Hours per day and type - none, but always at a normal weight
9) Any other cancers dx'd before BC - no
10) Rx drugs taken and what kind and for how long? just fertility drugs when trying for pregnancy
11) Diet - normal to healthy - very little fast food
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Sounds good Heidi.
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Inmate - so glad to hear that it hasn't spread and no chemo!
I am 3 years and 3 months out from diagnosis. I've started to worry less about recurrence, which then worries me because I'd hate to be blindsided again... I can't wait to get to 5 years!
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Heidi, sounds good to me, too.
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minxie - Congrats on 3years 3 months. Good to know that eventually one worries less about recurrence as time passes. And I know what you mean about not worrying. I feel the exact same way about getting away from these boards and getting blindsided again. I'd rather know about everything, then get this thing to shock me and shatter my life once again. You will be at 5 years very soon, time flies.
I deleted my survey as I felt I had made it too bolded, too long (I get so carried away talking about my case, the anger I feel I guess) - thanks Christina for being polite. I have huge vision problems myself. I will try to make it better and re-post soon.
MBJ's voice is so beautiful. Thanks for posting the link again.
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Rhondalee: I had taxotere... 3x in 3 week sets.... After first round it took approx. 2 days until I felt that horrible taste your talking about. My legs hurt from the knees down,and I couldn't really walk decent, I had no more taste.... my mouth had sores and my throat was swollen so that i couldnt even swallow if i wanted to. Approx. 7-10 I had this pain in my legs, the dead tastebuds stayed
even water tasted horrible ( and water has no taste lol ). The second round was a bit easier but the symtoms remained.. guess the body just got used to the taxotere. As soon as the next round of taxotere was on the program , my pain in the legs was almost gone only to start all over again after the next round. I had numbness in my fingers and my feet.. to this day I still have nubness in my feet and I 've been done with my Chemo. since Nov. 2010. Its a rough ride but you'll survive it.. I did and lord knows how many times I've cried over the pain and that I was so hungry and couldn't eat. It subsides and as soon as the taxotere rounds are done with , you'll immediatley feel better and your tastebuds will bloom again. The only thing you'll be fighting awile is the numbness in your fingers and feet. be strong..... you can do it.... and I'm here for you if you need me......
Monica
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I am feeling overwhelmed by the events of this week. To lose these 3 wonderful women....Suze, LJ and MBJ....in ONE WEEK is more than I can bear. I didn't "know" Suze very well, but I know she had young children, and my heart breaks for them. LauraJane was a bright light to me...I don't post much but do read, and I would always seek out her posts first. Her ability to see the beauty in every day, in spite of her illness, was truly inspirational to me. And now MBJ....she was one of the first to reach out to me when I was first diagnosed, and terrified. I still don't understand how this happened to her.
Also this week, we had a massive "reorganization" at work.....half of my co-workers (100 people) lost their jobs in 1 day. There was a lot of crying all around me. Of course I felt terrible for them, and at one time I would have considered this a catastrophe. But this week, I could not quite see it this way. I found myself coming to this board several times a day for a reminder of what is truly important. Ladies, I am hoping for brighter days ahead....for all of us.
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Ladies, I went back and read MBJ's posts from the last few months. In early November she is talking about the horrible pain in her shoulder, and says she has no insurance so can not go to an orthopedist. She is also having bouts of the flu in December. All "normal" except that in February she is hospitalized with the "flu" and they find a bone lesion in her shoulder. If she had had insurance, she might have been diagnosed sooner, and given that her BC had become hormone positive, she would have had treatment options.
All speculation, I know, but this was such an unusually sudden death.
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Mity:
I agree with your post completely. I remember Mary's time-line only too well and remember being worried about her. She had so much pain and trouble with that shoulder and just kept assuming it was from her frozen shoulder diagnose from earlier in her journey. I too was worried that she was going it "alone" for a while there, not having insurance, and then the move from CA to Kentucky, had so much to contend with that perhaps how she was feeling got a bit sidelined. All the while, the cancer must have just kept steamrolling through her body until, finally, her body just began breaking down. I can't even imagine the excruciating pain she must have been in with her spine breaking up from the bone cancer. God bless her and all she must have been going through. It breaks my heart, that by the time she started to get the care she so dearly needed, it was too late. I hate this disease and the power it can command over us.
Rhondalee: I ditto exactly all that Monisch said in her post regarding the taxotere. I had a horrid metal taste in my mouth that finally went away about 6 weeks or so after I completed the taxotere - even water tasted foul. I lived on - literally - Liptons instant beef noodle soup, which my onc was not the least bit happy with as it's sodium content is so very high, but it was the only thing I could swallow as the saltiness seemed to over-ride the metal taste. Between the neulasta shots I had to take, and the bone pain from the taxotere, I ended up having to take oxycontin (only half the pill each 6 hrs.) for the pain. If I took the whole pill every 6 hrs., it would knock me out and I had to work. It's important to keep ahead of any pain though, so if you take anything, make sure you keep on taking it to avoid a breakthrough. Taxotere was really, really nasty for me. I found it much worse than the A/C. Only thing I could do during it all - was to keep reminding myself - this too shall pass. I finished my last taxotere in Sept 09 and I still have a bit of numbness in my toes. I am resigned to the fact that I will always have this, but at least it's nothing like it was during the treatment - all my fingertips were totally numb and I could not feel my toes at all. No pain - just felt like appendages that were not my own - totally numb, yet tingly.
Wishing everyone a great weekend. I'm off to prom-gown shopping with my grand daughter and it WILL NOT be fun, I can assure you. One of the dresses she just showed me online has a price tag of $840. Yeah, right - not taking out a second mortgage for her prom dress, shoes, etc. - so we should really be seeing eye to eye on this one. Dear Lord, I have already done all this stuff with her mother and my other daughter - now I get to do it all over again! It's particularly bittersweet, as we are approaching (next week) the first anniversary of my daughter's death, and coupled with the loss of LJ, Susan and Mary, I'm just not really feeling "prom-time."
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Thank you for your kind comments and well wishes. I hadn't planned to pop back onto this board, but this little voice kept nagging me to return. I have another insight to share. First some back ground:
During my bout with cancer I was employed as a manufacturer's sales rep selling building materials. That meant that I worked with a vast array of men all day long. Many of my customers cared about me quite a bit, but given the nature of my disease, it was uncomfortable for them to ask questions. I found myself having some very uncomforatble conversations. To make it easier for all involved, I created a blog so my friends and extended family could get answers to their questions without me having to repeat myself constantly.
For the most part, I had forgotten about that blog. Yesterday, before I posted on this board, I reread it and added an update.
As I read all of my silly little notes, one thing jumped out at me... my deepening faith as my treatments progressed. I had a turning point where I just decided that cancer didn't matter, all that mattered was that I was going to be alright, no matter what and that became the reality I lived. To facilitate that, everytime I was dosed with chemo or radiation, I envisioned the old pac man (early video game for you young 'uns) gobbling up the cancer cells and destroying them. I told the chemo to kill it all! If asked how my treatments were working, I would tell people that the chemo was killing my cancer, and I knew the tumor was dying. Whenever anyone asked what they could do for me, I asked them to pray that my cancer disappears... I swear I coud feel their prayers working. I lived my life as it was meant to go on with long term health, I didn't live a life of fear and dread. I KNEW I was going to survive. That's why in my earlier post I said that I was glad that my oncologist didn't tell me that he thought I wasn't going to make it.
Post-op from my mastecomy, my very surprised surgeon told me that all of my cancer cells were dead - not a single cancer cell survived within my tumors. That's very rare - less than 4% of cancer patients see a complete response to chemo. The power of positive thinking Ladies! The power of prayer!!!
When you hit your 5 year mark - and most of you will... please try to come back here and reaffirm life, there will be someone else who'll need to hear it.
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LRM, good luck with the dress shopping. I've always told my girls they had to amoratized their clothes by the number of times they planned to wear the outfit.
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wow, thanks LydiaT. That's an interesting story and thanks for sharing. My story very much follows yours so it's a comfort, as this week, with all going on - it's been pretty unnerving to say the least.
Thanks Mity for filling in the dots. I had suspected all of that, but wasn't sure as I was off line during that time when MBJ was discussing her shoulder. I miss her positive posts here.
Have a great weekend ladies! Spring is here in DC, the cherry blossoms are blooming, and looking forward to enjoying the fresh air and feeling that something special and beautiful is on its way.0 -
Ladies,
The news here is just awful. The last time I lurked was March 7th. Many are so active here that the pages fill up and move on fast. I thought I would not read all those pages so I went from most recent to backwards. After reading the news I had to read all the way back to see how all of you are doing! It is heartbreaking. FBC!
Suze, LJ and MBJ will be missed by many. Most assuridly, these dear ladies will be remembered with love and gratitude that they touched our lives.
Peace to all,
BarbaraJo
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"The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience."
~ Eleanor Roosevelt0 -
"The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience."
~ Eleanor Roosevelt0 -
Hello again , i wanted to see if anyone could answer my question from 1-2 pages back? I really do not understand if there is something i should be doing since im negative? Ive finally got thto a place whers im pretty much pain free most of the tim so now i have been thinking what does this negative all mean for my future? my medical team pretty much sucks ,and will be looking for a new bs and onoc but in the mean time im feeling kinda unimformed ive read the thread but still not sure cause i was dcis and stage 0 but grade 3 should i have concerns. Irealize everyone including myself have been devasted by out recent deaths,i owe alot to mbj she got me through alot and its awful how she fell through the cracks but it also is a wake up call ,we must ALL stay on top of our health because nobaody else will take care
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Beacher- There really isn't much we can do medically as TN to help prevent recurrence. There have been studies that have found exercise and a low fat and low sugar diet can help. I think we all feel that after active treatment, we are just kind of left hanging. Like what do we do now?
I think most of our doctors recommend that if we have anything unusual going on for 2 weeks or more we should see the doctor. Things like pain, shortness of breath, headaches, etc.
Being Stage 0 with DCIS only your chances of ever having to deal with this again are very low. If you are not happy with your medical team, defintely find another!
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thanks TifJ! Nice to know im not alone.....take care
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hmmm just thinking about low fat ,and low sugar oh man i eat pretty now now but love cookies and cakes
i do exercise alot though but now i really got to rethink my diet,i have been eating alot of greenleafy vegies and staying away from red meat but i think i will just eat rabbit pellets ha ha food is scarey too! i only drink almond milk and whole wheat bread and real butter,wheat pasta what else ???0
