2010 Sisters
Comments
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Lost my last post from some stray keystroke so I hope I am not repeating myself.
Amyjo - Glad you are home and the surgery went well!? Daughters are such a blessing and I am happy that your daughters are with you now. I don't post very often but not a day goes by that I don't think of YOU and all our sisters out there.
About ports - I don't think there was anything that scared me more than the idea of getting a port put in. But mine was put in under conscious sedation and really went well. I had mine put in two days before I started chemo so I did use the cream to numb the area. I never grew to love the port - I only had eight weeks of chemo - but I am glad I had it as it is really supposed to save the veins from that wicked chemo. I had my port removed about three weeks after my last chemo and that was done under a local (!!!) It was one of those things that gave me the creeps more than hurt. You could feel the doc working on your chest but not realy feel any pain. The doc used the same scar to take it out that was created when putting it in. So I have only one very thin scar on my chest that will probably not be very visible in a year. Ironically - the port stopped bothering me about 2 weeks before it came out. Anyway - if I can do it - you can do it! I am a big wimp when if comes to pain and all of this.
God bless you all......I will keep you in my thoughts and prayers.
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jag- So glad you like and feel confident in your local Oncologist. Chemo is tiring, having to commute a long distance would be a drag. I don't have a port as my chemo is not as harsh as some. When I was investigating ports, I found a great post somewhere here (I tried to locate it again but couldn't). The lady suggested asking for a vertical incision located in a position that your bra strap would cover. It seems most surgeons do horizontal incisions which will be much more visible. This lady actually drew marks with a Sharpie pen on either side of her bra strap as guides. The surgeon said he had never thought of this and was happy to comply. It might be something to discuss as it would maybe prevent yet another visible scar. Wishing you courage and good luck as you begin!
mac5- I have heard so many posts about doctors not communicating, returning calls etc... It pi#$%^es me off royally. At my initial appointment with new doctors I ask for their e-mail. All my doctors are affiliated with a hospital and it is printed on their cards. I find e-mailing them gets me a VERY quick response, and I can make my points clearly and concisely. Also, I don't have to explain things ad nauseum to not very educated receptionists. Most doctors have Blackberries and are on the go (expecially doctors who only see patients a couple days a week). Like all the rest of us, we don't like "full" mailboxes. I hope you get things sorted out. You have to have confidence in your Oncologist, it is crucial.
Had chemo yesterday, threw up in the middle of the night, felt better then. Now on Zofran and the constipation dance begins. Glorious, cool, breezy day here in NYC. Thank you Earl!
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I'm learning so much from those who have traveled this path before me...thank you.
Today I bought a wig and a scarf. I definatley will be having chemo...and the only thing I could think of to prepare for all of this is getting something to cover my head.
Thanks for the idea of a vertical incision for the port rather than horizontal.
I had my lumpectomy last week...it went well..still sore but doing okay.
I am nervous about what is to come..chemo, radiation and hormone treatment.
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Had my port placed during my mast last week. My incision is horizonal in both my neck and shoulder. It was placed in the subclavian vein.
I tell everyone now that asks how I am doing, that I am doing fine but walking lopsided!!!
Start chemo next week and after chemo 7 weeks of rads.
Just ready to finish this cancer gig and get on with life.
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The pain from the drains is really bad tonight. I wish they has let me come home with the morphine drip.. I am allergic to so many drugs most of which are pain killers that Tylenol just does not do anything. Just found out that the antibiotic they prescribed for me for me is something I am allergic to! Oh the joy of being allergic to everything! I came home with 3 drains. The lymph node on the left side was cancerous, but is was as hard as a rock and is was so embedded in the nerves that they could not remove it without me losing the use of my arm, since I am left handed that would not have been good. They are hoping rads will soften or disolve it. I'm not sure what the future plan for this is as this point. I og to the PS on Tuesday, the onco on Thurs,, the BS on Friday. Maybe by then I will have know more about the game plan. I do know chemo starts on the 10th but not sure what all they will be giving me. I am having trouble with my eyes focusing on anything. I love to read and lot of people have gave me books to read so they are just sitting on the table. Well I am going to try and get some rest, maybe tomorrow will be better.
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Amyjo, I hope you are getting some relief from the pain, and that things go well for you this week.
Best wishes to all
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Oh amyjo I hope by now you got some relief from the pain, and has it heals it will feel better.Its nice to have these boards to come to to "talk" I know they have helped me.
I start chemo hopefully on the 15th. Need to get a port in first. I'm scared and nervous and the whole bit but also just want to get the show on the road. I'm doing theTC cocktail but it will be 6 treatments not 4 like Ihad thought so I need to get movin.I have a cruise to go on in Jan.
Anyway hang in there and a nice weekend to all!
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Amyjo49 - I hope you feel better this morning. The night time is the worst for me. Hard to distract myself and everything seems so close and scary. I send you a hug and truely hope that you feel better soon!0
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amyjo-There are SO many pain meds these days, I'm sure they can find one that works that you are not allergic to. I can't take codeine and they gave me Tramadol ( I think it is a synthetic Opioid), boy did that do the trick! I was in a lovely lala land, no pain, nausea or anything. You keep after them until you are pain free. You need your rest to heal and you can't do that in pain. It sounds like you have a great medical team and are close to your family doctor, just let them know. Praying for you my china-breaking girl!0
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Hi Amyjo--I second the DesignerMom comments and having previously worked for one of those big, nasty pharmaceutical companies
, there are so many drugs on the market--many really new that may be able to help. Completely different but I needed switch out from anti-nausea from first chemo to avoid spending another night cradling the toilet--and it worked. Hopefully they find something for you that works and gives you some relief. Take care, Rachel0 -
Hi amyjo - Hope you are feeling better today. Hate the drains, still have one left in under the left arm. Being a nurse I have emptied at least 1000 of these types of drains, but now I can really feel for those patients. I did lose part of the nerve under my left arm, the lymph nodes completely blocked it so I am left with permanent numbness there. If your pain med is not working, call your nurse navigator at the cancer center. She is the one who will help find a pain med that works and you are not allergic to it. I am allergic to morphine sulfate and Demerol, so I get other synthetic pain meds. Keep your chin up, the pain is always worse in the dark. Gentle hugs to you.
Peace and laughter, plus a few good drugs!
Cheryl
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AMYJO sending you prayers and a big hugggggggggggggg.After you reach the bottom there is only one way and that is to go up.sooooooooooo im lifting you up.please sistas give me a hand to lift up amyjo................
and all the other sistas who are goin through tough times right now.
God bless.
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Amyjo - sending prayers and hugs your way. Hope today is better for you.
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hey there ladies,
You all are fantastic encouragement to me. I finally slept all night at least from 12:30am - 6:00am this morning. My family said I "died" they tried to wake me for some meds and I just would not wake up. They freaked out and call 2 doctors and the pharmacist. For once I was no the one freaking out :-) Got my meds straightened out an except for the pain meds. We are still searching for something I can take. They do not want me to take more than 8 Tylenol a day due to the liver involvement with the cancer. My oldest daughter, Kristen, has taken my younger one, Kathryn, to the airport to fly back to her family. The family room is filled with cards, balloons, and plants. The kitchen has so much food that we can open a cafeteria! My husband said every member of our class, the choir, the media team, bucno group, and some people he does not even know come by to check on how I am doing.
My eyes are a little more in focus today so I can actually see what I am typing. Kristen just got in and said it is time to check my drains so I will go get that done.
Have any of you heard of a lymph node being rock hard? I have not been able to find anything on what causes this. The BS said that she thinks this may have been the actual source of the cancer. Which is strange since it is on the left side and the lump that was first discovered was on the right. Oh well, they say there is nothing normal about me.
Thank you for being there for strength and encouragement.
Joy and Blessings,
Amy Jo
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Amy Jo - glad you finally got some rest. I like that kind of "dead sleep" - nice, deep, refreshing sleep. But our poor families definitely do NOT like it!
Hope you get the pain meds straightened out - like everyone says, that is soooo important to your healing process.
Take care, and heal up fast!
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AmyJo: Somewhere on one of the threads I remember reading about another lady whose cancer they think actually started in a lymph node instead of in the breast. Sorry I can't remember which thread. If I run across it again, I'll send you her name so ya'll can talk. (((HUGS))) to you and your family.
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Amyjo I suffer from Chronic Pain due to a failed neck surgery. I take a time release form of morphine called Kadian (brand name). It works great for me. No dopey feeling at the lowest dosage and I can function. My doctor was a Pain Management doctor at MD Anderson so I know they know about the drug there and use it.
I am so glad you were finally able to get some relief. And sisters you are right about the nights being the worst. The beast seems to be more active at night when there are less distractions doesn't it?
And you know what just irritates the h---- out of me about the people who talk about how 'attitude' has so much to do with outcome, are always the people who have never been tested by anything like what you are going through isn't it? Just kind of make you want to punch something doesn't it?
Tryn2staycalm thanks sweetie. I only have 24 more rounds and 3 months of this round of Chemo to go through. Then I will have every 3 weeks of 3months more to do after that. Then I will have the surgery, then the Radiation, then the Reconstruction. Then on with the rest of my life taking the Hormone Inhibitor. It seems my body uses Fat and turns it into Hormones to feed the Breast Cancer. Nice little Beast to manufacture it's own food don'cha think? Now I know why my BMI was so important to my DX!!!!
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I hope it's a good morning for all of my sisters. Amyjo, I don't write often, but I want you to know I think about you all the time and I hope you have some comfort and peace today.
I woke up feeling desperate and anxious today. I feel like this is my "last" weekend. The port this week, chemo next week, the side effects, loss of hair, the kids, work, etc and I have 5 months of this and then rads and herceptin....how am I going to manage this, my so called life?????
Don't mean to be such a downer. I will try to get out of bed and put one foot in front of the other, not feeling like I can do much more.
Thanks for letting me have a place where I can be honest, and not be "strong"
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jag - We have all felt what your feeling hon. Some a little more than others depending on our dx and what we have had to deal with but WE KNOW THE FEELING. Your so right - its nice to come here as its somewhere where "we all are in the same boat". Struggling to get to shore. Somehow we will gain the strength to manage this. Lean on your friends and family and US - your sisters. Be as honest as you need be here. Rant if needed - we need to let it out at times. Hope your feeling better soon.
Cathy
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Amyjo--> Hope you are feeling better and stronger each day!
Jag-->I know the feeling!! It can be so overwhelming at times. I finally understand "one day at a time"! After chemo delays, and not being able to keep commitments, I don't make any plans anymore. If I feel well enough, I'll do something, if not, I stay home--simple as that! So, just put one foot in front of the other, like you said, and try not to worry too much about what's coming. You'll get through this! Just take care of yourself first--everything else can wait! And we are here for you whenever you need us!!
Hope everyone else is doing ok today--I don't always post, but I am following along.
I have my 2nd dd Taxol tomorrow. Hope it goes as well as the first. I had a lot of bone pain for about 4 days, but the Percocet (oxycodone) handled it pretty well. And only a day or 2 of tiredness, so, overall, not too bad.
Tina
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Jag: You'll manage this just like we manage everything else life throws our way - one day at a time, one step at a time. Just suit up and show up. Like you said, one foot in front of the other. If you look at the whole picture, it is too much. But you can do the next right thing, then the next, then the next...I frantically cleaned house and shopped and wore myself out before my first chemo because I was looking ahead as if it was the end of days. You know what? Today is just like the day before chemo was.0
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Good morning Sisters!
Day 6 - feeling pretty good. Made my own breakfast this morning! No nausea to wake me up last night, but I did wake up achy from the Neulasta I think. My onco ordered it thinking I was going to do the DD AC, but I opted for regular every 3 weeks instead (no Taxol for me). He told me I didn't really need the Neulasta on the E3Wk plan but might as well use it since I have it, and kids starting school tomorrow will bring home new cooties. Well, I don't think I'll use it next time, unless my WBC counts are really low or something.
Jag - it is definitely one day at a time. You will get through; I know the feeling of reality setting in now that the port and chemo are coming up soon. I had similar stress on the day my port was put in - made it more real that there was going to be something nasty going in there. Let your family/friends or whomever you can rely on help you (do for you) as much as possible. I haven't done anything *normal* in at least a couple of weeks. My teenage kids and DH are running the house; I eat, sleep, shower, and hang out in the living room when I'm not sleeping. We haven't called in the church ladies for meal delivery yet, but they have offered so we may do so once school starts and it gets a little crazier for DH to do it all. I feel very blessed to have so much help, and wish the same for all my BC sistahs! Put those kids to work!
Amyjo - hope you're having a restful day, and more to come! Any luck on pain management?
Hope everyone can enjoy some bliss today. It is a beautiful tropical day here in San Diego - so nice to open up the house finally. We've been running the A/C for days; can't wait to see that monstrosity of a bill!
My big accomplishment for today will be a nice, long shower!
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AmyJo, rest and here are some gentle (((HUGS)))) for you.
Tina, chin up on the taxol tomorrow. Only 6 more, right?
LadyinBama, I was up in Birmingham a couple weeks ago and am headed back in two weeks. Lovely city. Beautiful countryside.
MrsN - glad you are hanging in there so well with the AC. I read on the boards that it's a real beeee-atch. Big ((((HUGS)))) to you, too coming at you from the tourist-packed beach of Treasure Island.
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jag- A lot of us have use the advice of another BC sister Jayne "you don't have to be brave, you just have to show up". You are going to amaze yourself with what you are capable of! I can already tell you are a very strong woman, you are going to rise to this occassion too. I had children's stores for years and got to know one young mother of TRIPLETS. She had tried for many years to conceive. Then she naturally conceived TWINS with 6 month old triplets. When I exclaimed "I don't know how you do it!" she very matter-of-factly said "like I have a choice?" Sometimes it helps me to look at this BC fight that way. "Like I have a choice" that is if I want to live a long, healthy life and enjoy watching my son grow up. For me the ONLY choice is to saddle up and ride.
Tina- I'll be thinking and praying for you tomorrow as always. You are getting closer and closer to the end!
MrsNice-So glad you have such good, loving, caring friends and family to take care of you. I am also SO blessed, can't imagine doing this on my own. About that AC bill, mine was a killer in July, double! Then I just told myself it was what was helping me get better and heal. I also took the amount over my normal bill, divided it by 30 days and it ended up being only $4 a day. Nothing like tricking my brain into thinking it is just the Starbucks I didn't buy to stay cool, calm, quiet and sane!
Glorious, cool, sunny, early Autumn day here in NYC. I try not to think about it, but it was exactly like the day on 9/11. I guess I will always remember that day with weather like this. DH and I had a leisurely stroll in the park and then sat on a bench by my favorite gardens, even saw a Hummingbird! For the first time in I bet 10 years, I ate a fruit popcicle and enjoyed it SO. Life is too short to not eat popcicles!
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BarbaraA: I lived in Bham 40 years; it is a cool city that gets a bad rap from all the garbage that went down there in the 60s. I'm in Huntsville now, and it too, is an absolutely beautiful place. I've been all over Fla., but don't know where Treasure isle is?0
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Jag - don't let the desperation and anxious feelings rule your life. Call for help. I call either my DH or my primary physician. They are both really good listeners and let me talk myself to a place of relative calm. Of course you can always call on us. We have all been there and had times when we really freaked out over something. A dear friend that is a retired RN said don't be afraid to let others know this disease is all about you. They haven't got a clue and they just need to be there for you. Live each day the best you can and don't worry about all the things you are not up to doing that day. Tomorrow will be another day.
Thanks for all the support for my pain issues. I was able to get some sleep last night, actually in the bed and not my big chair. I managed to get a shower and wash my hair this morning without having to sit down. That helped my feelings a lot. We ran out of Popsicles so my daughter fixed me a frozen Horchata tonight and it was so good. (Horchata is a rice milk drink with vanilla, sugar, cinnamon, and I don't know what all.)
Mac5 - I will ask my onco about the Kandia and see if that would help at least with the bone pain. Thanks for the advice.
Sending (((((((((((((((((((BIG HUGS)))))))))))))))))))) to all my sistas
Joy and blessings
Amy Jo
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DesignerMom - I can just picture your stroll today in the park! A hummingbird - beautiful! You're absolutely right - stop and eat the fruit popsicles. What a day!
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Amy Jo - Look at you girl- helping and supporting your sisters. I knew you'd be doing just that as soon as things started getting a bit better for you. We all are rooting for you and wishing you the best.
Cathy
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I popped on this thread under "active topics" ... I'm not currently in treatment but wanted to post anyway to just show a flip side of the coin. I'm 5 yrs out as of 8/24 and still come to this site because of the friendships I've made and the never ending need to connect with people who get it. For those of you just starting your journey, please know that you'll never be the same, but in so many ways, you might be better. I've been lucky enough to meet up with dozens of the women I've met through this site and have formed life long friendships with some amazing people and have taken trips to places I'd never been before when we have gatherings I hope I never have to face cancer again in my lifetime, but in hindsight, the experience was more positive than negative. I hope many of you can say the same thing in five years. Good luck ladies
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Amyjo-glad you got some sleep. BamaLady, Treasure Island is on the barrier island off of St Petersburg, south of Clearwater Beach, north of St Pete Beach.
Mary, thanks for stopping by and letting us know there is life after breast cancer. I know I'll never be the same but I hope to stop dreaming about breast cancer every night. Congrats on your 5 years!
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