January 2014 Surgery Sisters
Comments
-
Diane, I started tamoxifen today, too. We can compare side effects. My tumor was so er/pr positive that my MO is saying it is the #1 treatment I can do to make sure the cancer doesn't come back. I know how you feel about having the air knocked out of you. I walked in to his office yesterday expecting the tamoxifen script and an "I will see you in a month" and walked out with a rads consult! Know that your mo has your best interests in mind. Try the tamoxifen and if it doesn't work well for you, you can always stop. The good news is that it will make our bones stronger!
0 -
Ann, It had to be a huge shock to get a rads consult when you were not expecting it. They do want what is best for us. Of course that doesn't mean it isn't hard sometimes. I also hear that the tamoxifen will lower our cholesterol. 😊
I'm sure you have a lot going through your mind. I hope you can get in to see the radiologist soon so you can know what they recommend and plan accordingly. Adjusting your thinking at this stage is hard. While I would hop for you that rads aren't necessarily, I want you to be safe more.
This is me...back to counting my blessings again.
Love,
Diane
0 -
Hey gang - I'll check in later with more when I have more time. Things have been crazy hectic around here with school, sports, work, my own health stuff and most of all the stuff with my dad. He is medically stable after his heart attack and stroke, but the stroke affected him severely and we're trying to get him moved to a long-term rehab. Unfortunately he's not married and none of us had power of attorney, so there is SO much red tape. I'm so stressed and frustrated.
Anyway, I wanted to chime in on two things. Ann - rads may not be the death knoll for your recon like you're thinking. I had 33 rad treatments and barely had any skin reaction. All of the tissue underneath tightened up quite a bit, so my plastic surgeon may have fun working with that, but even he said that it didn't look too bad. Also - Diane - {{hugs}} I'm on Tamoxifen, too. Honestly the only side effect I've noticed is restless legs syndrome. I've had that for years, but on Tamox it's like every night. I've already been having hot flashes and stuff since chemo, though, so maybe that's why I haven't noticed anything else.
Sorry I've been MIA.... I've been reading and trying to keep up, just no time to post what's been going on.
0 -
Hi, a rare visitor here: Just thought I'd chime in on the Tamoxifen. I started end of August, and so far only hot flashes that I have had during chemo as well. The joint pain that I had during chemo is slowly subsiding. Good luck to you, Diane and Ann on the Tamox.
Now, on to loosing some of that chemo weight and hoping for hair to grow back soon. I am tired of scarfs and hats
Hugs,
Alexandra0 -
girls it's official...my exchange is scheduled for October 24th. I'll be getting gummy implants and nipple reconstruction. Can't wait!
0 -
Eve, you doing okay? You have been on my mind the past few days. Hugs!
Marissa, woot woot on your exchange date. I will be 5 days behind you as long as my cheese isn't moved again with rads!
0 -
I am here,
Just wallowing in anxiety. I haven't heard a word about the MRI. :P All the other scans and tests I have had feedback by now. I called my BS yesterday but didn't get a call back, her office closes at noon today so she has 30 minutes to call....not holding my breath...well, actually I am...lol. The mail will be here in an hour so that is my last chance for today. I guess there is a lesson to be learned here, ugggh...I am not good at being patient, not in this regard anyway. oh well.
So sorry that you are still in limbo Ann...hopefully the meeting is informational and you'll have a choice.
I personally am saving the big guns in case the s#*t comes back.
Here's hoping the Tamox works with NO side effects...for you Diane and Ann.
Always good to hear from you Alexandra!Marissa, yay for real foobs (is that an oxymoron?)
Don't know how you do it Michelle...you are the bomb. Best wishes for your dad...he sounds so strong, guess that's where you get it from.
Thanks for the hugs and hand holding every one.....right back atcha.
Beverly, how are things going, really hoping you are feeling better.
ttyl,
Eve
0 -
Eve, I sure hope you hear today! Waiting is the worst!
Maybe it's a good time to stock up on movies... That's how I distracted myself while waiting for test results. I have my fingers crossed for good news. HUGS!
0 -
Thanks Mary,
Nothing in the mail....poop!
I called the imaging center and they were able to tell me that the report was done and that my BS has the cd's and report as of the 9th. I may get it on Monday.....but they won't fax it to me.....poop on that too...Hopefully I'll get the call on Monday also. I am just plain tired of the waiting game.
Mary, I am knitting a blanket per a request from my stepson...it is a Christmas present for his half sister. Knitting keeps me fairly sane.......plus a glass of merlot should help with the nerves
I could watch some chick flicks but they would make me cry...which might relieve some stress too.I get to have some retail therapy tomorrow, after a visit to the dog park I will run into Walmart and buy my hair dye, stuff for the cat box, and unbeknownst to Nate a sexy nighty for our getaway in Tampa next weekend. AND I have to learn to walk in my 3inch heel boots that I want to wear to the concert. Our hotel is half a mile from the venue....so I have to see if my back can handle the height... I am barefoot most of the time...so it will a shock to my balance...lol
have a great weekend everyone
E
0 -
Eve, just saw your posts. Grrr, so irritated that your BS is too busy to call you with results she's had since Tuesday. My BS makes calls in the evening if she can't get to them during the day. Hang in there. Have fun shopping! Oops...lunch hour is over...ttys!
0 -
Well Eve, that just stinks! Your BS has had the results since Tuesday? They know how much anxiety accompanies the waiting game. I don't understand how these docs think sometimes. I choose to believe that the outcome is positive and they aren't concerned. That is just the way I roll......a good weekend to you all!
0 -
well,
Diane and Ann, I am thinking that my BS is consulting with other docs. She acknowledges that my case has been a strange one. Not cut and dry at all. I triple checked the scans today and I do see some bright spots near my collar bone and on my liver. Rouge lymph nodes? anyhow....I am staying positive.....I have Daniel here and he is knitting a square for the blanket...doing a fab job too.
It WOULD be nice to have a heads up about the delay in getting some information. Tonia, my BFF that I refer to on occasion asked me "so when are you going to ballistic?" lol Tuesday is the day. I will ream a new A$$ hole with everyone involved if I don't get a call by Monday afternoon.
k, I am tired.......
love and hugs
Eve
0 -
So I had my "annual" yesterday w the bs. I haven't seen her since feb!!! Each time I went I saw the pa. Anyway she comes in and starts with why are you so paranoid?! I have all these notes from pa and ps about you worrying! I took your boobs off, you have no cancer! I gave u back ur life stop worrying!!! We did the BMx because I know u were anxious because of family history and then your DCIS, LCIS diagnosis, but it's gone, live!!
I was like what?!?! My husband who is black turned white! He knew I was pissed! I told her first off any time I called the ps or pa it was for a good reason my friggin incision had a hole in it and I could see the dang implant! She was like how many times? I told her 4 and she was shocked! She had no idea. She didn't know I was hospitalized in the beginning of August for infection, she didn't know ps did excisions in the office. Now she was pissed at ps. She said I told ps never to do procedures in office, that's probably what caused the dang infection!!! She said next time something goes wrong call me, no one else! I told her a stitch popped through a couple weeks ago she was like what?!?! I just am frustrated!!!
Good luck with your results Eve
Oh the other thing the bs said was because I had BMx there is 0% chance I could get a reoccurrence, 0%?! Is that true?
0 -
Beverly, I say live and don't look back. With dcis a BMX could well mean you are completely in the clear, but lets say she is wrong...why worry about it? I personally believe in the power of positive thinking. You will have checkups. There is nothing to be gained from worrying. I do think that if you need any more reconstruction you should think about getting a referral to another PS. I know you have been through alot, but try to let go of the anger. It will only hurt you. I would be dancing and toasting with my husband if I were you. 😃
Diane
0 -
Hi everyone
Eve-so sorry it is taking so long for you to hear back from your BS. I had a PET scan yesterday and am already stressing waiting for the results. I have an appt with my MO Tues, so hopefully will get the results then.. Last time she didn't have the official report ( I saw her the same day as the scan), but she pulled up the scan herself and showed me the difference from the original one and that the cancer was gone.
Beverly - I laughed the other day when I got a notice in the mail that it was time for my annual mammogram- there is nothing there to test. So, yes, I would agree that we are pretty safe when it comes to BC, my fear is that it will turn up somewhere else. The other day, when I had my annual GYN visit, she said there was blood in my stool. She said most likely it is polyps or hemmerroids, but that I need a colonoscopy. I'm sure you know where my thoughts are right now. It also sounds like your BS doesn't stay in communication with the rest of your team. That's not good.
Michelle- hope your dad is doing well and that you get through the paperwork nightmare. We are all so willing to ignore the possibilities of anything going wrong with us or our loved ones, and then end up in even more of a mess because we didn't prepare in advance and end up flying by the seat of our pants while under tremendous strain. In my case, we all knew my husbands time was limited- the VA was pretty clear that they could do nothing more to help him and it was just a matter of time (weeks, possibly a month or two) and he still ignored the business side of things. He told me our oldest son had all the info on his money and insurance policies, and then told my son I had everything. I knew about our actual finances, but nothing about life insurance policies etc. Even going through that, and BC, I still don't have a will, and even worse, have 2 homes in my name only. In order to take my husbands name off the mortgages, I would have to refinance both, and don't have a clue where to start.
Wishing you all a calm relaxing weekend
Anne
0 -
Michelle, Ann and Alexandra - Thank you all for your comments and support. The Tamoxifen seems okay. I do get hot flashes, but I was getting those anyway, so far so good I say.
Anne - I had my first colonoscopy 5 years ago for the very same reason, and it turned out fine...they said come back in 10 years. I will say this though - ask for the pills instead of that vile stuff you drink. You only have to take the pills and drink water. I think I had to pay $35 for them, but it was so worth it. I'm right there with you on the will. I bought the Will maker software last December and still haven't taken it out of the package. I would be more worried if my condo was worth anything right now, but I do need to get to it soon. Maybe one of your friends has a mortgage broker or a banker they can recommend. Either way, they can walk you through the process.
Alexandra: It is great to hear from you. It sounds like you are doing better and starting to move forward, which is fantastic! It's tough taking weight off, but you can do it!
Marissa - Congrats on your exchange date. I know you must be thrilled to have it on your calendar. The days will go by so fast. My incisions are healed and the nips look better every day. Putting my Vitamin D oil on and counting the days until mid November. Can't wait for the tattoos!
Michelle - Seriously, sometimes I read your posts and feel so humbled. There is so much going on in your life. I hope you are able to get your dad's rehab going and will get some relief from at least some of the stress. Just dealing with your treatment if more than most of us have on our plates. You amaze me!
Ann - Any news? I've been thinking about you. I know how hard it is when you have mapped out a plan in your head and have a timeline you think you can rely on, only to have someone else mess with it. No matter what, you've got this, but I so wish I was close enough to sit down with a great bottle of cab and talk it through, or better yet, go kick together, then head for the wine bar!
Eve - What can I say? You know I love you. You are so much nicer than I am. I would probably already raised some serious hell by now and then felt bad when my doctor told me she was waiting to consult with another doctor. I hope you are right, and she's just getting 2nd and 3rd opinions before she talks to you, hopefully to say that it all looks fine. Have fun knitting!
Apologies if I missed anyone. My memory isn't what it used to be, but my heart is still in the right place.
Wishing you all peace and love,
Diane.
0 -
Diane, I have my consult on Sept 23rd. Thanks for asking. Oh how I wish you were here to share that bottle of cab with me! I have no doubt we would be fast friends and have a great time working out together. You would appreciate that I made it to my Muay Thai class twice this week. They are finishing up stamina and endurance training outside while the weather is still decent end their is light between 6-8 pm.. It was primarily running intervals with sprints with an interlude of bunny hops and bear crawls. I didn't do the bear crawls and mixed in modified planks and push ups. I am determined to keep my pecs in good shape for exchange surgery end of October. My quads have been screaming, though! What a good feeling. I was supposed to go for a walk today with a friend, however, I pulled my left quad getting out of the car this morning when my husband took me out for breakfast. Yes, getting out of my car! I decided to see if yoga would help and did a slow flow hatha yoga class this afternoon. It helped my disposition and overall body, however, I can still feel the pull of the quad. Hoping tomorrow it is back to normal.
Anne, the preparing for the colonoscopy is the worst part. I assure you, you won't remember a thing. I had one two years ago. Good to go for another 8 years.
Eve, you are one of the strongest women I know. I admire your resiliency and not yet going postal with your doctor office for the wait no matter what the reason. I hope you get all your answers this week.
Beverly, I think it is time forms new PS. For your peace of mind if nothing else. And, yes, with everything I have read, with DCIS and LCIS your mastectomies have essentially cured you. My doctors only talk about the chance of recurrance because of my lymph node involvement and idc. I also had multiple small DCIS in the breast and it is never mentioned as reason to be concerned. You took care of this beast. You nailed it! It ain't coming back for you, woot woot! Now let the healing take its course......
Let's have a great week, January sisters!
0 -
Well Ann, I am strong but not from or because of BC.
When your sons go into war, are gone for 8 months with no communication, when you drive up to your house praying you don't see a car with a government license plate, because that would mean the worst news....that made me strong.You readily learn that you no control over anything......other than your own thoughts and feelings.
So today after 3 phone calls that brought as many varied opinions, I finally got THE answer.
I am cancer free! WOOT WOOT!!!!!! Nothing to see of any concern.
Lot's of me being pissed off in those phone calls, however all that matters is the answer I received.
Now the next call will be to set up a schedule for future scans. A year, I think for the next MRI.
So now MY challenge is to let all of this go. To revisit my wishes and goals pre BC. Or perhaps make new ones. For the first time; in this moment, after more than a year, I feel as if there is a brightness on my path. I want to dedicate part of the rest of my life to help others that have been diagnosed with BC. My mom visited people that were about to or recently had a colostomy. She would go tell them of her experience and how she dealt with the new way of dealing with an altered body. Her docs loved her and so did the patients. my mom was a ray of light and my beginning experience with strength and that life goes on. So I will draw from her beauty and generosity.
I know this crap can come back, but for now and as long as I can ....I will find a way to relive the stress that I have felt, so others can get through this in a way where they don't feel so scared.
That is my mission statement.
I will remain a part of this wonderful dialogue with you all. You truly are my sisters, my family.
love, peace
Eve
0 -
Yeah, Eve! That is WONDERFUL news!!! Just awesome! Whooohoooo!
0 -
Great news Eve!!!!!!
0 -
Eve, I'm soooo happy for your results but sooo sorry you had a stressful week waiting!!! I love your new affirmations. You go girl!!
0 -
Yay Eve!! I'm so very happy for you!! You have so much light to offer to others...how beautiful that it is your first thought. Love you GF!
Having a rough time this week. I'm not sure I'll be able to stay on the Tamox. I've been crying pretty much daily for the past few days, which just isn't me at all! My son is just pushing me to the limit, and I can barely keep it together. I'm hoping it subsides. No one wants to be around THIS. Going to bed early to see if sleep will help.
Love to all,
Diane.
0 -
Eve, congratulations. I am so happy for you. Your life affirmations are beautiful.
Diane, your reaction sounds a lot like what I went through when I started chemopause. I think our bodies need time to adjust to the drugs sucking every bit of estrogen out of our bodies. I would get severely over-emotional and cry very easily. I would also get very agitated with others, especially loved ones. Talk to your MO and see if it takes a few weeks to level off. Hang in there!
0 -
Ann, Thank you. I'll call my MO's office in the next few days if it gets any worse. I hate to tie up their time with this when they have patients in chemo that need their attention. I am very short with my son, who seems to be incapable of being nice...I get really upset and then dissolve in uncontrollable tears. It helps to have someone who understands. Hopefully, like everything else, it will get better.
0 -
I am especially happy to share my all clear on the same day as Eve! I got my PET scan results today, and it was clear- nothing of concern. My MO did suggest that since I am already scheduling a colonoscopy, that it get an EDG (esophagus scan) at the same time. It looks irritated, but she is not worried about it being cancerous. She said since I am already going to be "clean" and knocked-out, she said they can do both at the same time. If I wasn't getting a colonoscopy, she wouldn't even bother with the EDG.
Also, like Eve, I now get to plan life again. I also would like to use my experience to help others, but haven't figured out exactly how yet. What I do know, is I will be going back to see Lucia again before I head to Fl, then I am heading up to NY to spend several weeks with my siblings and their families.
And, like Eve, I plan to stay in touch with all of you. I don't have to tell you how your stories have encouraged me, strengthened me, made me laugh & cry, but most of all let me know I was not alone or crazy. I love all of you
Anne
0 -
Congratulations, Anne! It is a good day for January sisters!
0 -
Fantastic news Anne! I'm so happy for you, and so glad that you plan to hang out with us. You put it so well...we never have to feel alone or crazy...made me cry. Of course...lol.
0 -
Hey everybody. Been reading all the posts. Lots of exchanges coming up and nipples! Yeah!
Congrats Anne and Eve! Great news and exciting plans are waiting to be made.
It's late here....but I'll write a post tomorrow...update on my life.
Love Laurie.
0 -
Congratulations Anne! Keep up the good work! Good luck with your other tests - I'm sure you'll do fine.
0 -
yay Anne!
Good luck with the colonoscopy. I am waaaaaay overdue for one. I will ask my PCP for a referral at my appointment in late October. Might as well spend the money this year. Pretty sure we can itemize deductions this next tax season, so I'll get the probe and get it over with.
Helloooooo Laurie. Can't wait to hear about what you've been up to.
Diane, so sorry the tamox is giving you a hard time. Can you cut the dose so it is not such a shock to your body? Then build up to a full dose. Just wondering. About David being difficult, just remind him that not only are you the boss, but this mom boss has a black belt.....my friends kids, who are the same age are being a pain in her rear too! Pre teens, yuk! it does get better, around 21yo.
I am getting ready for our weekend...I always over pack. Nate wants 3 t-shirts, a collared shirt, 2 pairs of shorts, bathing suit and socks. I will probably triple that..lol. At least he leaves me enough room in the suitcase.
Better go do something constructive...
love you
Eve
0
