2010 Sisters
Comments
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amyjo so glad that is working for you so quickly. My skin gets very dry and itchy in the winter... and of course now between chemo and chemopause I didn't expact this winter to be any different. So far its worked great for me as well. My 73 yo mom told me about it last spring.0
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motherofpatient- Sorry about the margins. It sounds like you have a great facility. I believe it was your daughter who was having some breathing distress during/after surgery. Please, please discuss this not only with the surgeon, but with the anesthesiologist. It doesn't sound right, could be an allergic reaction.
amyjo- Love the new photo. I am counting on you to keep those other ladies sensible....well, maybe not too sensible!
BarbaraA- Oh great social director! Have the absolutely best time at the beach with the ladies. Raise a glass or two for me!
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BarbaraA - Hope you and the ladies have an excellent time. Everyone deserves it. Get wild and crazy and send lots of pics.
Jo
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Barbara A--you guys have a great time, I sure wish I could join you. Can't wait to see the pics
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oh I'm so green with envy! wish I was joining you gals at the beach. BUT I will celebrate having my port out tomorrow, and a CT scan Friday to start the rads train. Happy travels, girls!
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Hello All, I haven't posted for some time now but joined our group in July. I had to remind my self many times that I could do this. I started out with Avastin, Citoxin and Adreamicin Spelling may be wrong...I developed an infection in my port and had to have it removed after one treatment. Advice to all do not allow this to be done with local numbing, my surgeon did it in my hospital bed, there was alot of pulling pushing turning etc. I was quite sick with this and that type of thing needs general not local.. my wound healing was being handled by my surgeons nurses, while I deeply respect them wound healing should be handled by people well trained in this area. I went through a couple of weeks of daily irrigation ,wet to dry packing and home visit for the weekend. On the last visit at home I fainted and my nurse and husband called 911. I was quite embarassed to be seen on the floor bald with my shirt half off!! I came to and did not transport to hospital..The wound center said no harm done and I was healing but the method was outmoded. They use a method of 2x a week cleaning and wick with Malgasorb (silver) and then transition to Silverdine cream. So needless to say I went right there for the second deportation treatment and it is going well.Next chemo treatment was delayed one week and that went ok through a vein. Got a new port used it once.I developed blood clots in my upper left arm and went on coumadin. The new port never healed and eventually split open at the incision.No infection this time...I had this one removed under mediation management, sort of like what they use for colonoscopy... So I had the rest of my infusions in the vein.Then I the got a PE strange because I was on coumadin, my PT INR tests showed it working but I am one of those that this can happen to. I am on Lovenox 100mg inj daily since then. My DH gives me these nightly very gently with tears in his eyes..Well needless to say I was dropped from the Avastin study after only two infusions, we were going to try to catch me up but the PE sealed the deal. I was very upset I had all my eggs in that basket!! "We make plans and god laughs!!) I have been finishing up my last 4 infusions with Taxol. The sides are much different, bone and muscle pain and red rough sin, my feet molted and face and hands are red and rough. Will have my last infusion of Taxol on 12/16!!!Yea!! Then on to 12/20 apt with my Breast surgeon. My PA told me yesterday my last measurement was 1.4 cm!!! The tumor has softed and shrunk so much he had trouble finding the egdes!! So I will find out soon what type of surgery will do the job, I will be on Tamoxifen for years following, will be transitioned off Lovenox in about 6 mo and onto coumadin which will be years also..I still cry but much less often, I look around and see so many of us not doing as well as I have, its hard to feel bad for myself lately, I am almost out the other side. All my peeps say they are amazed at my strength but they can't see the inside of me only the outside. Please say prayers for a young mother with 3 kids and Sarcoma, Jen, she is having a rough go of it saw her yesterday and I had too look twice to recognize her. God be with her...
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Redninrah- APPLES
Teklya - Welcome back to near normal, knew you could do it sista! I had the same rads, 5 weeks, 25 treatments. It wasn't too bad until the two weeks after treatment. I guess it builds up. Just think, after that you'l be DONE!!!!
Samsue - I didn't graduate from UF either, so it doesn't really bother me personally, everyone is just moaning and groaning. I guess it is a good way to bond though, having students and staff working together and commiserating together.
Two ladies from my church have been dx'd in the last month with BC and they've been referred to me to "mentor" them now that I'm done with treatments. I'm not really sure how to handle it. It is so soon, and I'm not sure I'm saying the right things. I've referred both to this site, of course. I was wondering how you all feel about the subject? If you had someone "mentoring" you, would you want the honest, "it sucks but you can do it" approach that I think I'm projecting, or some other more gentle guidance? I got some of both in my journey, but early on, I think my docs and friends really glossed over the pretty terrible stuff. Had they forgotten or were they just trying to make it seem not so bad?
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shelleyj43--I think you have to play it by ear with each person. I personally like the give it to me like it is I don't want any surprises. I was lucky that I had a friend who had been through bc and much worse than mine and she was very honest with me about what to expect. But I realize some people just can't handle it. I would so there are probably more that want to know than want it glossed over. Just my opion. Good for you to be a mentor now and how wonderful that your church sees the need for it.
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kaz- Oh my! You sure have been through the wringer!! You sound like you have a positive "can do" attitude. So glad your tumor is shrinking so much. As you seem to develop bloodclots, even while on Coumadin, you might want to get a second opinion about Tamoxifen. Known side effects of Tamox are bloodclots and stroke. I LOVE your quote. We make plans and god laughs!!
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Thanks I will look into alternative to Tamoxifen. Looking ahead not back helps...Armed with knowledge...
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Sorry Kaz, not to reply to you, we must have posted at the same time. Wow, you are a trooper. It sounds like you are having good results though despite your setbacks. Sorry about your port problems, now I feel so lucky to have had mine in and out without any issues. Hugs!
SherryC - thanks for the ideas, I don't really know these women very well, which is making it difficult to know which approach to use. One though, is a science girl like me, so I have a better feel for her. The other I don't really know at all, and I haven't heard from her much since our first conversation so I'm a little worried. I hope I didn't say the wrong things! We are already scared out of our wits to begin with. I keep trying to remember that!
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shelleyj43 - It it good that you are involved in a caring church that wants to help its' members. Have you had any counseling training? I am fortunate that I have received counseling training through my education. I know this will be tough for you since have just finished this round of this horrible disease. If you have not had any training, just let them know you are there to hold a hand, lend a shoulder cry on, an ear to listen or guidance through all the doctors and tests. Answer the questions they ask and in the beginning don't overload them with what is down the road. We all felt like we were trying to take a drink out of a fire hose in the beginning. I know you will do a great job and these ladies will grow to love you and your guidance. One step at a time we will all get through this.
Kaz - What a rocky road you have been down. So sorry things have been so rough for you. Glad you are feeling a little better and back to posting again. Remember you have a world of support here. Take care and keep us updated.
DesignerMom - Wish you were going to be here this weekend. I will take some videos that maybe Barbara can post so everyone can see some of the sights and maybe feel like you were part of the party.
I got an OK from the RO to go horseback riding as long and there is no canter or gallop, just stick to slow walk. I told him I would try. The worst of my bone mets are in my back for L4 to S4 and my ribs. If I have any discomfort I am to get off the horse and walk.
He said if I had not been an experience rider he would have said NO WAY JOSE'. I told him not being able to ride anymore was almost worse than the Stage IV BC dx. He has also approved for me to back off to the 12 mcg/h of the Fentanyl to see if that eases the pain enough and that will allow us to determine how much good the radiation has done. Next step for me is to finish the reconstruction and after healing from that then we will do the Big series of radiation treatments to my breast/chest wall area. Onco get back for India in 2 weeks in time for my next Aredia tx and we will get new marker count tests and results then. Hope everything is still going down. Well I need to go to the store to get something for DH to cook for dinner.Joy and blessing, Amy Jo
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Have fun with the horses Amyjo!0
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How is everyone doing...
You all are in my prayers... I am also sending well wishes...
I have a pre surgery appointment tomorrow... Mastectomy scheduled for Dec 13....
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sohardbnme-good luck with your appt and surgery
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Sohardbnme - love your pic! You look great!
AmyJo, thanks for the good advice, I haven't had any training at all. This is very informal but I want to do my best. Have a great time riding that horse!!
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shelleyj43: I have found myself in the "mentor" situation recently and yes, it was scary. The girl was a good acquaintance of mine so I knew her reasonably well. I had heard she was falling apart after her diagnosis and yes, she was. I arrived, gave her a big hug, and then looked into her eyes and said " sorry but that is about as nice as I am going to get...lots of people are going to hug you and look at you pathetically but I am not here for that". She laughed and we got on with talking about her diagnosis, her kids, her husband. She asked me lots of questions which I was able to answer honestly and I know ( because her husband sent me flowers to thank me) that our initial conversation totally changed her outlook. I told her that she could do this crying or do this not crying but either way she was going to have to do this and it's not good for her kids to see her crying all the time. She has stayed in touch and constantly thanks me for helping her. I don't feel like I did much but I have to admit it makes me happy to know I helped someone get through this a little easier. I had a "mentor" who was an old work collegue but very much a kindred spirit. I still remember her telling me that the best part about chemo is the extra value you get when you go for a facial because the therapist won't know where your face ends and will do your whole head! Do what you can Shelley, that's all anyone can ask but I say do it honestly because you are probably the only one who can give her that info.
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Sohardbnme - Love the the avatar.
Amyjo - my girls ride all the time. One has 3 horses and has been a "horse woman" since she was 7. Me, I can lead them around, feed them but please don't make me get on and ride! Enjoy your time at the beach.
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Thanks, MumOrange, your input helps, too. It's really awkward at times, isn't it? I imagine most of us will be able to help others on their BC journey at some time or another. I just didn't know it would be so soon! I have a little perspective, but everything is so fresh, and I think that is why I'm having a hard time NOT being realistic. Maybe in a few years it will seem less daunting and it will be easier to be the hand-holding type. Although there is room for that, too, as AmyJo said.
How are your kids doing? My older one (boy) who is a senior in college is oblivious, My daughter who just started college is more concerned with me and always asks how I'm doing. I'm really doing fine, but she still seems worried. I'm not sure how to reassure her. When she came home for our Thanksgiving holidays, she did see my hair and knows that I'm done with treatments. When she left for college I was very bald! So I hope that will help her not worry so much. Maybe by Christmas I will have enough hair to look normal and that will help.
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P.S. I did also tell one lady the benefits of chemo, as in not having to shave anything for a long time! She laughed.
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BarbaraA, Amyjo and all you other ladies headed for your beach getaway, have the best time. I just saw that Los Vegas ad on tv "what happens in Vegas stays in Vegas". I guess now we'll have our own version, "What happens in Duck, stays in Duck"!0
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DesignerMom - not quite. we will be taking lots of pictures and posting them for all to see! Barbara is here in Raleigh and she will be picking me up in the morning around 11ish and we will head to the airport to pick up Marybe then it is off to Duck. We will stop along the way and get some lunch. Then it will be party time when we get to Duck.
My back is killing me this evening and tonight. I don't know why it is hurting so bad since I have not done anything that would have agrivated it. I have been trying to be really careful so that I could go riding this weekend. Hopefully tomorrow will be better. Tomorrow is the last rad treatment on my T4-T11 region and that is where it is still hurting. This was supposed to make it better, but it does not feel very much better tonight. I am kind of bummed, but I am still going to Duck.
Need to go show DH how to use the new washer so he can do his laundry this weekend.
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amyjo - Did you take less pain medicine today? I am sorry your back is hurting, I do hope it feels better after a nights sleep.0
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Friends- We are gonna PARTY and we will DOCUMENT it so be ready~!!
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Have fun BarbaraA - you make me smile!0
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Hi ladies! I was just at the doctors today with my decision on how Im going to procede with my cancer. After tons of reading and praying I have deceided on a bilateral mastectomy with reconstruction also. Is there anyone who can leave me with some questions to ask a plastic surgeon Monday and I could use it. Thanks so much.
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Paula: Google "breast reconstruction questions" and similar topics; I found several sites that had lists of questions and things to consider. Sorry, I don't remember specific sites, but there's lots of help out there. I had BMX in July with TEs inserted and will finish up with my implants next month. So far, so good. I'm pleased with the choice I made. But there are lots of options so just decide what works for you. Good luck.
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Hi there. I hope this finds you well and managing as best you can. Met with radiation folks this morning. Had a CT scan and was marked with 3 tattoos (tiny dots) which I was not impressed about. Is there anything this poor boob/body of mine will not undergo??? Seriously it is almost 2011 and that is the best they can do??? sheesh.
I then had a chat with the technologist and he was able to share variety of info including the best body wash (Dove for sensitive skin, unscented). There were a series of creams that could/might need to be used as things progressed. Also, reminders that the area would always be sensitive to the sun and that I would need to protect that area closely. I was told to keep stretching my arm over my head and working it so that when placed in position for rads, it would not give me any trouble. When sitting on the couch to continue to elevate that arm and keep it limber and pliable. The rads begin early Jan and would be completed by the 2nd week of Feb. Pretty full calendar!
I find myself really hating all of this for some reason, (oh, I knew I had to go there, but now that I am heading there, I don't like it). Please forgive me, feeling a bit "schmoopie" tonight.
have a great weekend, and take good care
remember to just breathe. . .
Teklya
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Teklya--I hated starting rads too. I knew in my head that it would be easier than chemo, but I really wanted to just be done. 33 treatments stretching out before me seemed too much. Once I got started, though, things have progressed pretty quickly, even with some delays due to the machine not working. Getting out each day has helped me get up and out and stay busy. I often stop on the way home to do some shopping--rads may make me go broke lol!
I hope you can relax and enjoy the holidays!0 -
Thanks Lady! I dont know why I didnt think of this. Thats how I found this site, lol. Thanks!
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