2013 Survivors!!!
Comments
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Scorchy - I agree with chrisrenee: Hell Fuckin Yes!
46andsingle - totes get a 2nd opinion if you can. Taking away your notebook is SO disrespectful - I would even complain to hospital admin if you have other choices in Drs. If you don't have a choice then I would still address this bad behaviour of his in some way before moving forward - when I had the energy to keep my voice down and stay calm, that is… or do the letter the way 301724 suggests, also a great option because you will be heard esp. if your
delivery is calm and formal.
omg, juneau… (((HUGS))) hope today has some light in it for you.can't.... keep... up... [huffing and panting with effort to read all posts...]
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I had the same chemo. Ended in November. Then my feet started hurting then up my legs. Then hips, knees , shoulder, hands u name it. It's horrid. I had 2 bone scans already. Is it the chemo that does this? If I sit still for a while or lay otherwise if I'm moving it's ok.
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mcCook, not sure what you do now but I understand the idea of finding something new and since we have been immersed in medical stuff that is what you have been witnessing. I was in a motorcycle accident way back in the early 70's that had me in and out of the hospital for surgeries over 3 years, 6 months of that in hospital all told. I ended up at age 26 going into nursing after all that and had no regrets. That was a long time ago but it was the time spent watching nursing students etc. that gave me the impetus to do it.
Now I have not nursed in years due to our expat life and now that my DH is retired and we have been back home for 4 years and this BC has happened I am searching for something meaninful to do. However I am lucky in that I am in a position not to have to worry about a job, health insurance and money coming in. I do think regardless of those things, that this has made me realize that once this forced limbo is over, I wil have to find some form of pay back in general.
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Juneau..you got this girl!
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Hi Shari0707.....Im delighted that the out-look of these local gals gave u hope.....and dont forget America/Canada and Austraila are miles ahead of Ireland in treatments, i think uk/Ireland have the worst stats in Europe...yikes..
...I am still amazed that all u brave girls do treatments then head to work within days or hours!!!! The first thing I was told was that I would need 9-12 months off!!! Wimp or what.lol
Hi Mcook....be careful in your choice...as u know I had a notion to do something new and different from....after exploring many options I took a short term position in our local hospice....great people, great cause.....while i work in the fundraising finance team i have found it difficult to move away from cancer when i am constantly talking about it at work! As a lot of the donations come from bereaved families. I turned down a permanant positon with them and start a new job on the 19th march with a recycling company!! Still not where i see myself in 10 years but im gonna take a time out so i can make the right choice.
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aruba....thank goodness there are NO SEs from Synthroid! I have been on it for 30 years because of partial removal of my thyroid. You should still have yearly blood tests to make sure the dosage is sufficient. I take the real Synthroid only because my current dosage doesn't come in generics.
I have been on Eltroxin...Levothyroxine and a few others. They say the generic Synthroid is not as good as the real one but who knows?
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Thanks for your response schatzi!! I picked up scrip and am on levothyroxine..not synthroid, but think they are all similar. Reading on line sounds like I shoule avoid brussel sprouts, kale, grapefruits??? Lovely for trying to lose weight....
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Ramols-- If two other doctors dont see a way out without chemo, I'll do it, but as I barely weight enough now to be healthy and have anxiety disorder, and heart problems run in the family, I don't think I'm the best candidate. I don't have a good support sys of people.
I am in a rural area but this doc is 60 miles away and its one of the top 12 in the country for breast cancer, listed in the back of the amer cancer society brochures, so I'm so suprised by the way he has acted.
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allurbadday--thank you so much!
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Tazzy...I also had a wire insertion before my Lumpectomy and the area was numbed. It wasn't that bad...it took a while tho while they found the right spot with the xrays or mammogram equipment or whatever they used. I was lying on my stomach on the table with my boob thru a hole and the techs were in a cubicle. It was exactly like the stereotactic core biopsy. To me that was the worse ordeal of this whole thing because it took so long and because of disc problems in my neck, I had to brace my neck the whole time. For a "normal" person, would have been much easier. They then taped the long wire to my boob and off I went to the OR. The BS said the wire was 100% in the right spot.
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Stride, Yes, you can see that the skin is trying to pull away from the breast. I just don't know if i am willing to have chemo. I live alone and there's no one to count on on and off for 6 months. I don't believe I would make it through it. I don't weight enough. I would revisit the idea after surgery but I refuse to let this tumor stay in my body while they "see" if chemo shrinks it. I want to remove the tumor, start tamoxifen because I am am 95% est and 95% progest and see where I stand on the chemo. If 2 OTHER doctors told me this was the ONLY way to save my life, I'll revisit the idea, but surely there are alternatives.... I don't see why they go to that, with all of its long term risks. Why not remove, radiate if margins aren't clear and get on that tamoxifen to keep tumors from growing and see how it goes?
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Thanks to each and every one of you who came through with words of wisdom. ALL were appreciated.
Those of you who had chemo--did any of you have it one drug at a time? That is what this man wants to do and I may add that I think my chemo doc is ACES!! He listens to me. sees the WHOLE person and he really seems to care. I truly believe he would do all in his power to lessen SE's. I can't however, go for treatments 60 miles from home. There is NOT one person who can ever accompany me to that long of a n event. NOT ONE. I will be going through this alone is what my sticking point is. I need to do it here locally, that's the only way I CAN. Would he order it to be done here if I kept him as my doctor? Why isn't he offering this option when he knows I am so far away? I found out from local survivors that folks here have bc chemo all the time as ordered by BIGCITY60MILESAWAY doctors.
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sonson-- I am attempting to recruit visitors for my guest room from all over the country if I have to do chemo and local folks who will let me stay in their guest room. Would you say that I'd most need someone the 2nd, 3rd and 4th days after treatment? Say, have it on Thursdays so I could get weekend visitors? I can't get 6 months of people to do this, but surely I won't need it. I live alone and I am absolutely terrified of being here alone in my house sick, vomiting, helpless. It's causing me to be willing to risk my life and forgo chemo. It's that bad to me.... I just CANT do it alone. I have enough problems in good health. It's hard not to be anyone's sister, daughter, mother or wife.... Is chemo, one drug at time, HONESTLY what they say it is? do-able. Is it not the living hell that I think it is? I have a hard time believing it when folks say they painted their house or jogged or played tennis. I just want to be able to sweep my floors and not wish I were dead. To be able to sit up and not fear choking on my vomit in the night.
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46andsingle - As many others will tell you, chemo is doable. The meds they give you these days for nausea, etc. make a huge difference. I did not have a single day where I felt ill. No nausea, no vomiting. My taste buds were 'off' for a week but that was pretty much it. Tired - but the kind of tired that needs a nap each day - not the kind of tired that's exhausting. I'm a runner and ran many days through chemo. I also worked about 2/3 time. There's huge variation in how women tolerate chemo but many many of us have found it to be easier than we expected.
Regarding neoadjuvant chemo (chemo before surgery), there's a reason for it. Removing a smaller tumor decreases the risk of getting tumor cells free into your system. Of course the decision is yours but read up on the reasons and do not let your fears lead you into a decision you may regret. You are stronger than you think.
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46andsingle, I think if you get to a chemo thread you will find that it is not all that bad. I am not saying it is a breeze but having just finished dose dense AC (4) and Taxol (4) I would say that is is doable with a minimum of friends with you even for short periods. For me after a lumpectomy and SNB that no one expected to have the pathology it did, I asked why I could not go straight to a mastectomy. No time was the answer and this may be the case for you too. Getting the breast off and nodes out is one thing but if the cancer is already circulating in the lymphovascular system then surgery does nothing to halt it. Thus I went straight to chemo and am just now approaching surgery and in my 8th month of cancerland.
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46andsingle...please don't despair. Call the local cancer society and ask for a driver. There are many volunteers that wait while you get your treatments. What drugs is the MO suggesting?
As far as nausea, as someone said already, there are many good drugs that help that but I found being sick was a relief. I had no appetite for a few days each treatment so I stocked in easy stuff to either mostly nuke and reheat. The chemo won't last that long and truthfully, altho my hubby was around, I found I preferred being alone. Most gals I know from here, usually slept a lot. I dozed in my recliner where I spent most of my time. By the time for the next treatment, you will be feeling normal again ...and so it goes.
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I traveled 1.5 hours away. First flew to ny for 2nd opinion.
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My daughter Mary did a short video of my last chemo and brought the edited version over today and we uploaded it to youtube.
http://www.youtube.com/watch?v=ndUwFTRZvBEI called it Chemo Land and it has actually cheered me up - she has the ability to make things fun even when they seem not to be. The last one she did was when she buzzed my hair shortly into chemo.
Marian0 -
46andsingle,
Your mind is making more of a horror story than it really is. I have felt like crap and had bad aches and pains but have not had anyone drive me anywhere except for my outpatient surgery because they wouldn't let me drive home. However, I could have taken a cab to the nearest hotel. In my town the American Cancer Society has a hostel type house. Take a deep breath and realize the only thing you absolutely have to do today is make a decision about today. I am sorry you don't have anyone, I do but they have always had me do for them and I just don't ask for the most part. Where are you geographically? I may have missed that on your profile. I would love to be able to offer more answers but you must get ahold of the American Cancer Society that is nearest you and see what might be available.
Hugs, Hang tough, Sheryl
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marian - wonderful video - you look fabulous. And your daughter is gorgeous. Bet you aren't missing that chemo floor!! Hope you enjoyed the beautiful sunny day we had today in Vancouver - I savoured every moment of it. Now I am ready for a nice dinner of organic steak and fresh organic mushrooms and greens that I got at the Farmer's Market this morning. But no red wine - still don't have a taste for it!!
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Marian - that is a wonderful video. You smiled throughout! What an inspiration. Your daughter is gorgeous. Do you have a link to your other u tube. So glad that part is over for you. Only sunny days ahead.
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Marian....loved the video and adagio is right, your daughter is gorgeous. Congrats on finishing chemo....upward and onward now./p>
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Marian,
Super great video. Best of luck in the future!
Carolyn
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46and single, if your bc has progressed to the point that it is trying to pull away fom the skin you MUST have chemo!!!! No ifs ands or buts!! Chemo is a given. I'm going to be brutally honest here and I'm very sorry! You are in denial, this is not a good scenario. Whether or not you have it prior to surgery to shrink it is not the issue, it is now to stop the progression to your lymph system, TO SAVE YOUR LIFE!!!! Even if you have no one to count on, count on yourself to survive. There is hospice care, you will not have to travel. Stay near the hospital, but honestly, HONESTLY, I'm telling you, there is no issue of taking care of yourself thru this. I did. Many did. Prepare yourself by moving the necessary items to your place of comfort, move the tv remote, telephone, your laptop to to the sofa, bed wherever, have snacks and drinks handy but quite honestly I came home from my chemo treatments, had a couple beer, made dinner for my husband, kids, and parents. I ate, I laughed and I was fine!!!! Please, I beg, do not wait for 2other Drs!! Just do it!!!
The standard for BC is AC-T : adriamycin and cytoxin together for a min of 4 infusions each lasts about 2 hours. This is the easiest of the 2 parts. You will be given meds to take before and after to eliminate nausea and meds to take after to stop it if they don't work. I never needed those! Then either taxol or taxatere once a week for 12 weeks or every 2 weeks for 4 infusions. These infusions last about 5-6 hours. I had the later which is harder because its a higher dose. The SE are pain, pain and more pain but again the meds get you thru. So, yes one at a time is standard procedure. Again I didn't need anyone to take care of me. Not only is it doable, it's no where near as bad as you imagine!!! Serious, girl!!! Can you take some pain to save your life????
Weight is not an issue, it is calibrated to your weight and hey, everyone I know going thru it or gone thru chemo has GAINED at least 20 pounds.
I would much preferred to have taken myself to and from every trip. As schatzi said, i much preferred being alone when i had the chance.
I had a blast, it was fun in the unit with other clients and the nurses and volunteers. Very rarely was it sad, or upsetting, or anything but a motivational session. We all laughed, supported and made jokes.
Right now, right here, you are no longer allowed to listen to negativity!!! Chemo is not that bad anymore. Vomiting rarely, if ever, happens!! I threw up once in 4.5 months of it. And I was sitting and thought to my self " hmmm... This isn't just heartburn but... " ran threw up in the toilet, brushed my teeth and laughed. It was the weirdest vomit I'd ever had!!! I didn't feel sick, I just felt weird. The meds they give you, honey,will give you the energy to clean your home more than you ever had. I'm telling you, I had more energy during chemo then I do now.
46andsingle, please, PLEASE, removing the tumour and tamoxifen are not enough. I'm afraid that your dickwad dr, although he was insensitive, and horribly rude, I think maybe he may have just been trying very much, very ignorantly to save your life.
No pussy footing around here, if the tumour is that close to breaking thru the skin, it may be in your lymphatic system, the quicker you get chemo, the quicker you kill those cells. The better chance you have at living to have a future. A long, healthy, happy, fearless future!!!0 -
Marian... great video - would've loved to seen you really pole dance
awesome.46and... not much more to add on the chemo posts. Anti-nausea drugs are amazing these days and I didn't have one day of feeling sick. Felt like shit, but never puked. Use the volunteers as you need them. wish I lived close to you. I had neo adjuvant chemo and it worked... shrank that shit of a tumour to almost nothing. You have to make decisions that you are at peace with
Sheryl... great advice - the mind is such a powerful tool... sometimes to our advantage, and sometimes not.
Schatz... thanks for telling me about the wire insertion. I just hope she comes out of surgery with clean margins.
Oh! marian you look fab by the way.... hope I look half as good at 64.
Off for a hot tub with DH, then back in, watch a movie, glass of red and off to bed. Nite nite ladies, love you all xxx
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aruba...the only thing I was told NOT to eat/drink was grapefruit. I can see that kale especially might be high in iodine and would perhaps skew the dosage. You will feel no different other than perhaps more energy? LOL
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46 and single.... Do the chemo! Nowadays it's almost completely painless with all the meds they give u beforehand to protecti u for the nausea and stuff.. It affects(effects? )?everyone differently but it's not so bad.. I did 4 AC and then 12 taxol and some days I did the taxol on Thursday and worked on Friday! The worst thing for me was fatigue but even then it wasn't so bad I just needed the rest of the chemo day to sleep it off... It's really not so bad!
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Hi to everyone .. Off to bed
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46 and single - Don't pass on the chemo. It's not that bad. Sure, there is fatigue and the whole bald thing is kinda weird, but for the most part, it's entirely survivable. I did the usual four doses of Adriamycin, followed by 12 weeks of Cytoxan and Taxol. I would start showing signs of fatigue a couple of days after chemo, so I should have stuck with my Thursday schedule, but professional commitments made it so that I had to do it on Friday. Saturdays were fine and then I just slept all day on Sunday. I was a bit on the foggy side on Mondays, but I still made it to work (as an attorney), although I would often go home early that day.
The side-effects were not pleasant, but entirely do-able. Like many of the women here, I had very little nausea and vomited only on rare occasions. The good thing is that you realize that you are being pro-active and taking steps to treat the disease.In retrospect, my worst side-effects were that horrible taste in my mouth (I solved that with Trident Layers gum), frequent nose bleeds near the end of my treatment (I think that was due to the fact that all of my nose-hair also fell out) and ugly finger- and toe-nails caused by Taxol. I had a limited bit of neuropathy in my fingers and toes from Taxol, but all of those issues eventually disappeared a couple of months after treatment finished.
I fully understand that none of this sounds pleasant, but it's not so bad that I would forgo treatment out of fear. I know that it sounds trite, but the entire experience was something I now regard as just another element of an interesting life, a life that I believe will be longer because I underwent chemo than it would have been had I not.
Good luck and don't be shy about asking for help. People are fundamentally good and that especially goes for the folks here.0 -
46andsingle-please listen to everyone. Don't pass on the chemo out of fear or distance. I had to travel 95 miles each way to my appointments. Check with your local American Cancer Society there are programs out there that help with transportation, check to see if there is a Hope Lodge in your city where you can stay for free if you need to stay overnight and live more than 50 miles from the hospital. You may even find after your first treament that you are fine to drive yourself, I could have if I were not scared to drive in a big city. I still cleaned, cooked for my family, shopped. The few days that I felt bad I slept most of the day but still was able to do simple chores. You can do this.
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