March 2014 Surgery

Happy Cinco De Mayo Friends! Hope everyone gets the chance to have a nice frosty margarita later today!

24 days on Tamoxifen and so far so good. I have times when I'm achey, tired and maybe even a little warm but since I just turned 47 I'm gonna chalk it up to getting "older" instead of the drug! I'm assuming that if I'm "not really sure" whether or not I'm having side effects, I'm probably not.  My MO did not mention getting any blood work or uterine ultrasounds done while on Tamoxifen.  Does this sound normal?

Headed out for routine dental exam and cleaning this afternoon.  My plastic surgeon put me on antibiotics (2 pills day before, 2 pills today and 2 pills tomorrow) to help prevent infection in tissue expander.  Has anyone else had to do this?

Take Care everyone.  Think of you all often.  Esp those undergoing chemo or having surgery related issues or complications.

XO Franny

iwannaseeyoubebrave, I was told about needing the abx before dental procedures way back before my surgery. I think my PS is just being extra careful.  She's one of the ones who won't let you shower with a drain, etc...   Best of luck on the Tamoxifen.  Bet you'll do just fine!  Just like me and Julie. I am going to email my MO about the blood work and ultrasound though.  Thanks for letting me know about that.  Again, makes you wonder why docs do things SO differently every step of the way?!?

Franny how funny, I had a dentist appt scheduled last Wednesday and when I was brushing before leaving it occurred to me that they would ask if anything was new and how much detail should I get into with having TEs but not starting Tamox yet. Then I thought about the abx cause my MIL takes d/t her knee replacement! So I rescheduled to be sure but I'm not sure which doc to ask for these at this point!! The dental receptionist said there's something I can take there one hour beforehand...

I'm glad I read this forum (yet again).  I had a dentist appointment today too.  Started Tamoxifen a couple of days ago.  I didn't mention anything to the Dentist, it was just a routine cleaning also.  Moving forward, is it necessary for any other dental work for the Dentist to know about the BC and Tamoxifen?  I know I'm kind of weird about this, but I didn't update my medical info on my forms today, you see I know a gal that works in the office, and I don't want her seeing this on my records.  

Am I the only one who has tried to keep my diagnosis quiet?  My DH spread the word to more people than I would have ever cared to have know, I guess, I just look at this as a somewhat personal crisis and I personally did not want to be the topic of conversation, or have the apologetic, sympathetic words, arm touches, hugs and glances from everyone.  Don't get me wrong, I have nothing against those who prefer to make it very public.  I guess it is kind of like grief, everyone handles it differently.

I have a question about follow-up care for my other gynecological parts (ovaries, etc.)  I don't have a regular gynecologist right now.  I go to a sliding scale clinic that did my women's exams and sent me for the mammogram through the best chance network, and now I am on Medicaid.  Is it normal protocol to get my ovaries checked now?   The clinic I went to did the basic pap smear, etc., which was normal, but they said they don't do the uterus, ovaries, etc.  Do I need to get myself a regular gynecologist now that I'm covered?  Do most women who have breast cancer get their ovaries checked too?

I'm with you Footballnut, I shared my experience with everyone mainly because if I hadn't been proactive about my treatment my diagnosis wouldn't have been made for who knows how long. I was told to wait 6 months and have a follow-up mammo even when they knew my daughter had bc. Because of my insistence on an MRI the cancer was found on the side they weren't even worried about. I think we all need to be proactive and insist even though the doctors don't think it is necessary. They can't possibly be right in every instance!

As far as prophylactic antibiotics...I was in the dental field for 17 years. Telling your dentist EVERYTHING is more important than you realize. Even "just a cleaning" releases millions of bacteria particles into your system that can be harmful and cause infection. It's not just your heart that needs to be protected if it is compromised. I am sure our TE's can be attacked by that bacteria and infection could set in. Even if my dentist didn't want me to take the pre-med antibiotics I would insist on it. Just my opinion though!

As many of you said - I told everyone also - I understand that some are not like that but it makes me more at ease when people know what is going on that I interact with - it explains some things.  Vintagegal - that was the thing I kept running into - people who had no idea that there were so many different kinds of BC and different treatment plans based on the type grade and stage.  I had many people say - oh my so and so had that and they were back to work in a month and are great today - but they had no idea that all that person had was a lumpectomy for a small DCIS and nothing further was needed.  When I tell people what I have to do they look at me like I am speaking about another disease - so I look at this as an educational venture for myself also - I tell everyone I know and tell them what my treatments are and why I am having those treatments.  I know I knew NOTHING about BC before I was diagnosed - I just thought I did

Linda and Vintagegal...I have been a little more careful.  My girls are 6&8. We aren't trying to shelter them, but we want to have those important conversations with them. We haven't used the words BC, we don't want them to misinterpret my situation when they here of someone who has passed.  They just don't know the right questions to ask or ability to interpret context. 

We have talked about things in stages. 1st was the surgery. They knew I had bad stuff that had to come out.  Now we will talk about meds that make your hair fall out...one thing at a time. They just can't process it all in one sitting. We don't lie to them, if they ask, we tell the truth.  

I am planning to try to make this as light hearted as it can be. Let them try the hats, wig etc. I just don't want them to be frightened. 

Hopefully, my brother will shave my head if it comes to that. I'm not sure I can go there, at least not yet. He shaved my sister in laws when hers was falling out from chemo.   The girls didn't bat an eye when she didn't have hair, although they were much younger. My oldest does remember. 

Speaking of people not knowing what kinds of BCs are out there, I went to a Look Good Feel Better class yesterday and I met 2 other women with BC and they were already going through chemo and they did not know what kind they had. I was kind of surprised by that.

I am really open with telling people. I even started blogging about it so people who have questions they are afraid to bring up can get answers there. I am amazed at how many women are not going for mammograms or doing self checks. Not that you want to scare people into it, but I think a healthy awareness is so important. 

I think I got my last fill yesterday! My PS said he wants to see me in 3 weeks before my next chemo to see if we will want to overfill them. Um....NO!!! I'll go back but I think I will gladly decline. Today I am pretty sore...but not as bad as I was closer to surgery! 

Lakegirl, I think you are doing a great job handling this with your kids...so thoughtful and careful. Good job. 

Frostecat, I feel quite similar about it as you do. I did tell some people, but really only people that I knew of would only give me support and help, and not start approaching me with pity and negativity; I don't need that! Unfortunately, my DH told his family (of course), and they have been a nightmare! Not only did they start sending me emails and cards and other messages that were extremely depressing to me (just one sentence as an example will give you an idea: "we're so sorry for the utter misery you are going through, and wish we could take it all away"), they also were pushing their "advice" onto me as to what treatments I "should" be getting. And when I simply started ignoring those messages, they would resend them over and over again! I got so tired of it, that I unfriended all but one of them (one of my sisters-in-law, who never sent any such messages, only one message that was supportive and positive, and one small gift as a token right before my last surgery) on facebook, and blocked them on my email account! I told my DH that I did that, and also told him why, and told him that he could chose whether or not he'd tell them that I did and why! I have no idea if he did or not. Let's just say that I am NOT looking forward to our "vacation" in California to visit with all of his family for 2 weeks at the very end of June... UGH!

My mom and sister have been very supportive, and have surrounded me with positive love and caring, even though they live thousands of miles away (in Belgium). We're talking on the phone a few times a week, as we always have.

The few friends that I have chosen to tell have also only given my positive support. I have been very blessed with our incredible homeschool group; they took care of my son during the days the week of my surgery, and did homeschooling with him, alongside their own children! My husband dropped him off in the morning with his school work, food for the day (he has tons of food allergies, so has to eat foods made here only), and his cello and cello music. Then he picked him up after dinner the days I was in the hospital, and right before after I was home. Only a few other very close friends know, and also have been positive and supportive, thankfully.

I find it private also, and do not want to be treated with pity and negativity. 

But, I really think it's also great if you are strong enough to be upfront about it, and especially go out and try to be a spokesperson for the good cause! We need those strong women!!!

I have been very open about having breast cancer, and initially discussed it with anyone who would listen to prompt people to think about their own risk and be sure they were being proactive with their health care. After a while I became a bit more militant and now seek to educate people about what breast cancer really is, and what the statistics really say, and how people are really affected.  For too long it has been pinkified and tied up with a pretty ribbon that masks the fact that early detection is a myth, mammograms are faulty and while they may save some lives they don't save enough, not enough money is dedicated to research, too much money is dedicated to fundraising for education and inflated salaries for the folks who run breast cancer organizations, there is too much misinformation out there - like 98% of early stage cancer is survivable - this stat is put forth because DCIS has been lumped in to the "early" grouping and nobody will die from it but 98% sounds better than the actual truth, there is not enough accessible financial assistance for those who need it, our stage IV sisters are virtually ignored in the breast cancer conversation even though the death rate has not changed much even with advances in treatment, too many companies are making a profit from the slick marketing of pink products while actually contributing very little to viable cancer charities or organizations, and the list goes on....

Vinmama - I'm sorry, but I did have to chuckle at reading your first paragraph.  Not at you, but with you!  My my, those DH's of ours - my husband is actually one of the quietest people I know, but geez, when it came to this, I felt he took out an ad in the local paper.  I realize he needed support too, but a few close confidantes I would have been fine with, but lets just say, after a "discussion" one night, I don't think he let it go any further, lol!  Moving forward I asked him to keep my treatment private.  I'm sorry about your family and the facebook situation.  I do believe that most people have good intentions, but quite frankly, I don't see a lot of these people that often or am I close enough to them for them to know.  I told a couple of my closest friends and asked them to keep it confidential which they have.  I explained why and they understood and have kept my trust and have given me support throughout all of this.  As Kelly mentioned, and I've said this before, I don't want this to define me.

SpecialK - love your comments regarding "pinkified".  I agree with you 1000%.  In doing my research, I have learned so much about this organization.  How much of donations goes towards everything pink, and so little into research to find the cause/cure.  Don't get me wrong, I am totally for awareness, but I also don't believe someone's sister needs to make THAT kind of money.  I have received so many "pink" things, notebooks, pens, binders, even a candy bar.  Being the way that I am, I certainly am not going to carry a tote bag that has "breast cancer" blaring across it.  I would much prefer that $$ spent go to research or helping those in need receive the necessary medical treatment.

Special K, you said what I've been wanting to post, but am not as good at writing how I feel so didn't as I thought it might upset people. I was about to gather friends and family to do the Race 4 the Cure last month, but after I found out how much the CEO makes and how little goes to those in need I was appalled. My DH asked me why I wasn't going and I told him that I couldn't party it up all pinkified and put on a happy face. When I'm feeling better I'm going to take the money that I would have spent and pay it forward to someone in need that has breast cancer. What I learned from my dx was mine would have never been found with a manual self exam. I had numerous microcalcifications that can only be seen with a mammogram. I don't hear any education or talk about that, which I think is important for those that are in the mindset they don't need a mammogram.  I have a feeling I'm going to be a bit upset/frustrated/pissed when I watch football this fall and see all that pink merchandise. Yes, I support awareness, but feel its money that should go toward medical bills and help for those that need it. (stepping down from the ranting podium) Thank you I feel much better now...good night sisters