Calling all TNs
Comments
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Ok..deep breath...surgery on Tuesday...we will be with you all the way...what exactly are you having done?
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Titan- I am having a MX and lymph removal. For those of you that have had this done. Do you recommend anything I should prepare to have ready for when I get home. Will I need a nurse or whatever. My daughter will plan on being here. The drains etc chance of infection all of that stuff kind of scares me. My surgeon talked so fast when I was with him and I also have such a difficult time understanding him. He has a real strong accent. I did get a couple of hours of sleep tonight. I wake up feeling like I am wasting time sleeping. Crazy is probably the best way to describe my state right now.
Teka- You are right, My personal doc who is also a dear friend is a pain in the arse to the oncs, surgeons etc. The nurse at my surgeons office made a rude comment about him when I was there on Thursday. When I asked after waiting 3 hrs how long it would be to see the surgeon she made a sarcastic remark about how I didn't actually have an appt that my doc insisted I get in that day and they had to figure out how to squeeze me in and how I was screwing up the schedule as it was. Titan and many of you would of been proud of me for the way I handled that comment from her. I wish everyone had someone as caring and knowledgeable as my doc in their lives. He was so saddened to give me the info he had found out today. He ended the conversation with "it is in Gods hands". TIme for me to start praying. Well it's almost 5AM I am finally starting to feel a little drowsy. I guess I should say good morning everyone hope you have a fabulous day!
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LJ, everytime I hear disturbing news here, I feel like I am hearing it about my sister. You are no exception. For the past 24 hours I have wondered what my choices would be, and what I would be feeling. You have every right to feel crazy, and I can so relate to you feeling that sleep is wasting time. BUT rest will also keep you in a better frame of mind.
I only had a partial Mx, and really have no advice other than some I heard here. One of our sisters said it was nice to have one of those big wedge pillows to sleep somewhat upright at the beginning, because raising herself from flat off the bed was less than comfortable. Take your daughter with you to any more appointments, and have her take notes as to what care you will require. It is so difficult to remember things when you are getting such news, and deciphering an accent makes is all the more tough.
I willl be keeping you in my prayers.
{{{{{{Laurajane}}}}}
Meece
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laurajane I think I might get in my car and go stomp that receptionist it would make me feel better anyway LOL! You have some AMAZING women here in your corner. Don't accept what they are telling you just yet. Have your surgery get 50 opinions if you have too! Just remember that God can do medical miracles I have seen it with my own eyes! Find your guidance within your faith. {{{{{big hugs}}}}}}}0
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Oh Laurajane I have a MX in Sept of 09 so any specific question just PM me if you would like.
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I have been off the boards while visiting my son and his family. I am sorry to hear your news, LJ. Sending good thoughts and prayers your way. I just don't know what else to say. As far as what to expect after MX......Have lots of pillows handy. And get a pen and paper in the bathroom where you will be emptying your drains. The surgeon will need to know how much drainage you have post op before the drains can be removed. Take your pain meds before it gets out of control and have OTC stool softeners at the ready. All simple things that help the initial post op week or two go a little better.
Swanny, you asked about CT scans. My onc orders a PET scan everysix months. I have also read on the here that some do not have any scans at all. Just monitor any symptoms.
Welcome to all the new ladies.
Navymom
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lj- look up Modified Citrus Pectin on the American Cancer Society's website. Supposed to catch any rogue cancer cells that may sneak off during surgery.0
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Lynn 18 where are you having your surgery done?
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Question to all of you.... My friend 's sister in law found a lump in her breast.... Went out and purchased health insurance. Few days later went to the doctor for a physical ,then biopsy all that good stuff. She needs chemo. She received a letter yesterday that the insurance is cancelling her due to pre existing condition. My question is: she still needs the treatment. Is there any programs that any of you know about that can help her get the treatments? Please let me know.
Have a good weekend everyone.
Monika
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Have her check with the American cancer society. Also what ever meds/chemo she needs she will have to contact the company that makes the drug and get ahold of their financial assistance department. Every drug company has a way to get patients help. There will be a mountain of paperwork BUT there is help out there. Also make an appt to see the ONCs billing director. And talk over a payment plan. Frequently if the billing dept talks to the Doc about lack of insurance the Doc will cut the rate if the pt is willing to set up a little payment plan. I worked in an MD office for many years and this is how it worked there. A sweet squeeky wheel gets the grease! Best of luck to her. If I think of anything else I will PM you
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laurajane, as many have said more eloquently here, you have a legion of women out here in your corner and throwing out positive thoughts and prayers on your behalf. I remember when I was diagnosed, I didn't sleep for weeks it seemed - I thought I'd be depressed and want to sleep but instead, it was the opposite and I didn't want to waste time sleeping. I hear having a really great recliner/rocker chair is very helpful to have after MX. I just have to wonder whether after surgery why they can't try carbo or other regime; my onc just put me on it, there was no trial... Have they said what the plan is after surgery?
Wishing everyone a SE free weekend. I myself am dealing with fire-armpit-from-hell (one more rad; then 6 boosts) but I am fine with it, as long as it's terrorizing any potential rogue cells... Sugar, love your do!!
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Swiftbird...when I had rads I really didn't have any issues except for an area breaking through due to the boosts...keep those creams on..also you probably arent wearing a bra but if you are..don't...we went to the beach right after rads were done and though I covered the area it got lots of fresh ocean air..plus I didn't wear a bra all week..I was healed up in no time..my onc was amazed at how well my breast looked..in fact I cancelled my year appt. with the rad onc...no issues..can't see spending the co-pay...
Monika..your question was answered but can I say that insurance companies can suck? I thought that Obama fixed that preexisting crap.
Hey LJ..thinking of you..Tuesday can't come quick enough..I honestly feel that once this is done and a plan is in place your "expiration date" will be a long time coming...I feel it and I know it..!
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LJ - know that we'll all be waiting in that waiting room with your daughter.......holding her hand as well as yours. I had a bilat mx and it really wasn't as bad as I thought and the drains weren't too bad, more of a huge annoyance. I showered from day one, using a big safety pin, pinning the drains to a 1-1 1/2 inch ribbon tied around my neck. I wore loose clothing and used a large body pillow to keep me from accidentally rolling over in my sleep. (((hugs))).
Monika - a friend at work has a relative that is facing a cancer recurrance and is uninsured because her husband had been laid off and they hadn't been able to get insurance. They were very concerned and worried because they do have retirement accounts, savings and various properties, but didn't want to drain their resources right away. It turns out that the same place I was treated does have a grant program and they will be eligible, the social worker is also putting them in touch with other programs for medication as well. Have your friend talk to the social worker at the hospital, they are connected to the many programs offered. If the social worker doesn't know, talk to the onc or his nurse - they can help.
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Oh Laurajane - I wish I was there to give you big hugs!! Get through this surgery and then worry about everything else - I know eaiser said then done but try!! I had a BMX and it wasn't as bad as I thought - the worst part was dealing with the drains but I did it by myself. Have something comfortable and button up to wear home. I also heard a chair would have worked better for me to sleep in but don't own one! Just take the pain meds and sleep. I know you are saying that sleeping feels like a waste of time but sleep heals the body so try to as best as you can!
Monika - how can it be a pre-existing condition when she didn't have doctors confirmation that it was there yet??
Have a good weekend - it is beautiful here in WI. ((HUGS))
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Kad22 : I do not understand either.
Jenn3 thanks for the info.
Titan: I agree with you.
Navy mom : Thanks for the info. I will pass it on to her.
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I didn't have a masectomy but my SIL did (guess we like to keep the BC in the family)..we were diagnosed one year apart...freaky...she did very well with it..hated those drains though..was glad to get them out..She is now over two years out and doing well..reconstruction and every thing. She didn't have to have chemo or rads though..she is er &pr positive..lucky girl..I guess...She really hated the drugs they gave her. She was in pain...constantly...so..I don't know..even though I'm tn..I would have to say that my recovery from everything was much quicker than hers...We both have/had breast cancer but our paths were totally different with different se's.
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The best thing that happened to me today. I went to a reunion for my grammer school. I graduated from 8th grade in 1971. I knew a few of the people and believe it or not a couple of the men knew me and were disappointed that I did not remember them. I had a good time and connected with some old friends.
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Swanny..that's probably because they looked OLD and you do not..ha ha.
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Funny - actually everyone (even the guys) looked pretty good. I am hoping one of them might ask me out. Now I have to get back on facebook for the reunion site (i dont like facebook) so I can keep in contact and maybe get that date.
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My best thing today was having a hot dog roast with my DD and her fiance. They are so sweet together..does anyone remember that engagement period? When you couldn't keep your hands off each other and had to be together all the time?
Plus..my DH and I are going to the ocean for a few days on Monday..I'm so excited..we did that last year right after treatments...I remember walking out to the ocean and just bursting into tears...I never thought I would see it again when I was diagnosed.
Life IS good..though we BC patients just have to work for a little harder though..don't we?
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LJ I had a Bilateral Mastectomy on Sept. 24, 2010...I had virtually no pain. Took Tylenol the first 3 days. I did find sleeping in the lazy boy was much more comfortable than the bed. I slept in the chair the first 3 days. I also had pillows under each arm. The only inconvenience is the drains. Also do exactly what the Dr. says.... Good luck. You are in my prayers.
Has anyone ever heard of wound revision?
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The best thing about today was spending it shopping with my DD. It helped keep today positive because it was three years ago today that my dad passed away (his nickname was Sugar)...and exactly one year ago today that the sale of my mother's house closed and she wound up in the hospital with congestive heart failure and COPD on a respirator for seven days (she flatlined twice during her stay in ICU). So I've just about gotten through Oct. 9th on a very positive note this year. I was dreading this day but it wasn't so bad because this year is better.
Have a nice evening ladies and LauraJane I'm going to include you again in my prayers tonight.
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What is everyone doing to prevent a return besides working out and diet? I am taking Vit D & C, iodine, flaxseed oil capsules, and aspirin 3 times a week. I haven't started chemo yet and I plan on stopping this while on chemo. Anyone taking supplement while rec'ing chemo?
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I take my two calcium pills each morning - a 2000 unit Vit D3 and one 81 mg. baby aspirin - each day - every day. All agreed to by my onc. I have changed some of my eating patterns, but have to admit, not nearly as much as I should have. Exercise really amounts to just my normal running around each day, with working, raising my 15 yr. old granddaughter and her heavy schedule and remaining active with life, not any programmed "exercise" as such. I do have to add something that I personally feel, and this is just MY feelings, I do not wish to impose them on anyone else; however, I am on a few other boards as well and I must honestly say that I have seen other triple neg gals (as well as hormone positive) go on massive documented CAM therapies, taking as many as 20 different pills a day, all having scientific basis, only to recur or progress anyway. My onc is not a believer of those types of pill taking, yet there are onc out there that do recommend this. So, since I feel, again my personal feelings only, that this disease is merely a freaking roll of the dice anyway, I can live with taking only what I presently am taking. I do wish that they could make the calcium horsepills a bit smaller - geez, I dread getting those things down each morning!
Best wishes to all,
Linda
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My best thing today......spending the morning with DH having a good breakfast, a trip to Lowes, worked in the garden, talked to DD at college, she's doing well, catching up on work and now we are getting ready to sit down and watch the Saints play - whoo hoo.....
Fighter34 - I am of the belief that getting cancer is a crap shoot and having a recurrance falls in that category for me. With that said - I have been taking 1500 units (500 3x day) of calcium and 2000 units of Vit D3. I also follow up with the oncologist and pay more attention to what my body is telling me. I do find that I don't eat a lot of processed foods and am walking regularly.
Hope everyone is having a great weekend.
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Hee, hee. I updated my picture. At the beginning of all this I said if I lost my hair (which I have after Hubby and I shaved it down to bare scalp yesterday) that I hoped my hair would come back in, Hot Pink. My friend bought and sent me this wig. I like it and I may just wear it. Really!
Juanita
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Jwaterlily - too cute!! Love it!
Best thing today was the weather although it was a little too warm for Wisconsin! I did finsih my two large comprehensive paper/exams for my Masters - so that is good!
Laurajane - still in my thoughts and prayers!
Have a great week everyone!
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Had a good weekend so I am grateful. Thinking of you Laurjane. Hope you are doing OK.
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jwatrlily- one of the first things my son did when he learned I was going to have chemo was to buy me a hat. It was a Patriots ball-cap but the top was one of those flame-head type deals; you know... red fuzz going all over the place. I wore it proudly, and it gave me the first big laugh after diagnosis.
Diet: yep, I was scared into all the low-fat, no sugar, exercise, take supplements scenario also at first. Now, after the "Oh crap I'm going to die" phase has passed I have pretty much resumed my pre-diagnosis lifestyle: everything in moderation, with a bit more emphasis on low-fat. I no longer keep it to 20% low-fat, as I initially did. I will say that concentrating on fat content, like concentrating on calories, was a real eye opener.
Just back from a gorgeous six hour sail with hubby and my crazy cousin. It was a beautiful day here. Tomorrow I have to finish the Insects section of my Naturalist Journal. Over 2000 raptors flew over Cape Henlopen hawk watch yesterday; I think it was a record day.
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I take vit d3, folic acid, biotin, asprin, milk thistle, flaxseed, multi vit., COQU10, calcium..don't know if it will do any good..but I feel good taking it..the onc knows I take all this stuff...says, the D3 and calcium and folic acid are the best. plus the aspirin..when you hear on the news that 70% of all breast cancer patients are low in vitamin d..well..that is good enough for me..hoping to be in the 60's or 70's next time it is checked.
Oh and about the lifestyle..I do jog 2 miles per day..eat apples bananas...I like doing that..but I also enjoy having my wine and eating well..avoiding processed foods and alot of red meat and dairy..but didn't do much of that before anyway...sooo..like they say its a crapshoot..not going to avoid everything fun and going out with my friends...and trying to just live normal! heard too many stories of people going crazy with the vitamins and exercise and dropping dead a young age..not for me.
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