August 2013 Surgeries

Pam358

Lisa - it sounds to me like your family doctor had a strong opinion. I would let her know how much you value her opinion and that she really has you thinking since you chatted and you are wondering if she could explain the reason for her opinion (ACT) a little more. Maybe she will use different words or give you more information to help you make the decision. Her words seemed to put you back on the fence so they must be important to you. Sometimes I find it easier to make a decision when I know and understand why someone believes a certain way.

LiLi1964

Pam - my family doc has been my rock thru many years of pain w/these excruiating headaches.  She has advocated above and beyond for me in trying to get the best medical care in anything and everything - particullarly these darn headaches!  She is the best medical professional I have ever come across and I look at her as my guardian angel - that's how much her opinions and advice mean to me!

She was out of state for a seminar last week when all this transpired; she would have been the first person I turned to after getting all these issues thrown at me and having chemo delayed.  It likely would have saved me all the turmoil I've had over all this.  But such is life.....

Having said all that, I still make my own decisions.  She is well aware of my trust issues w/doctors; and she knows I NEED as much medical info as possible in order to make my decisions.  She also understands why I'm easily frustrated w/doctors given the number of years my headaches were mis-diagnosed but she never holds back her opinion and I'm glad she did not in this matter.

I'll listen to what Cardiologist has to say and MO after she gets Cardiologists recommendation.  I listen very carefully and if I'm still torn on what to do, I'll turn to my family doctor and tell her why I'm torn.  As always, she'll listen and then give me her advice.  I'll weight that in my decision.....

She's already explained she is more worried about my cancer than my heart.  Since I'm far from a medical professional, and I don't have all the reports sitting in front of me (although she will provide them electronically if I ask) she's looking at this medically - wheras I have a lot of emotions tied into it.  She knows that, which is why she is asking me to just listen to what the specialists are telling me and I'm sure she knows me well enough that once I hear, if their advice is to move forward w/AC-T, that I'll weigh everthing w/as little emotion as possible.  I think that was her whole intent; reminding me to take my emotions out of it. 

KBeee

Lisa, I hope your appointment goes well today and that you can get a clearer directino on things.  Limboland is awful!  I understand wanting a clear plan. 

I never did find out the cause of the blood in the urine, but it has stopped, so fo rnow, it is on my "list" of things to bring up when I meet with the MO.  I wish we could see them between chemos.   I go in, get labs drawn, see MO, and then head upstairs for chemo...repeat in 3 weeks... my next one is Oct 11.

honeybair

Lili, like you, I was very concerned about the use of Adriamycin because of possible heart issues down the road.   My MO informed me that there might not be a down the road for me unless my cancer was hit with the big guns, Adriamycin being one of the biggest guns.  It is a harsh drug with harsh side effects, but it is a powerful one.  Now, looking back, I am glad that I was treated with it.  Oncologists do not seem to think about our quality of life as much as they want to preserve our lives.  Once I accepted and understood that philosophy, I wa able and willing to accept the treatments that were prescribed for me.

Good news:  I was able to sleep all night in my bed last night comfortably for the first time since my surgery.  I attribute that to the physical therapy I have been receiving.  It is so good to leave that recliner.

Wishing you the best possible outcome and a peaceful heart as you pursue your treatments.

LiLi1964

Honeybair - HURRAY!  YOU SLEPT IN BED - COMFORTABLY!!!  I'm so happy for you.

I completely understand your post and that was what I felt my family doctor was trying to tell me as well as MO.  At least in the back of my head....but I'm a stubborn German gal and sometimes don't hear what is being said to me. 

Good news - just returned from Cardiology and my heart is perfectly healthy.  Apparently there is some "grey" area on interpreting the ECG; he looked it over and looked for any beginning signs of heart disease.  Put a huge smile on my face when he returned and said "your heart is very healthy - no signs of heart disease.  Any of the factors we can see in early stage heart disease are not seen at all on the ECG.  Furthermore, I interrpret your heart muscle output at 60%, not the 50% as originally noted on the test results.  You are well in the normal range and it is my opinion this is the way your heart has always been".  GREAT news!

He, too, was of the belief based on the notes he received from my MO that it is the entire medical teams view to treat this cancer with everything possible and with the best chemo they have.  He said the note he received made it very clear MO was concerned if the heart muscle issue could not be resolved if this right node surgery shows cancer lingering there because she feels I NEED the AC-T to properly and fully rid this cancer once and for all.  That hit home as well; when he read me her note to him.

So, all clear.  He said there are a few (and he was clear it was a few) human studies showing Coreg does in fact protect the heart muscle for Adriamycin use.  Nothing is guaranteed; but we both agreed to use it as added "insurance" to protect the heart.

Thank you, Honeybair.  You very plainly spelled out what I needed to hear!  But having my emotions tied in knots wondering if I was now dealing w/heart disease on top of cancer and not knowing if I was even healthy enough to get the best cancer care possible - well I was torn (as I'm sure my post showed).

So, surgery is scheduled for right node removal/biopsy and port placement first thing 10/9.  MO and chemo to begin on 10/10 - and I am going to take the advice of my doctor and go w/AC-T now that I know my heart is healthy.

Sincerely, Honeybair, thank you for relaying your experience!  It puts things in better perspective for me. 

And I'm so happy your slept....in bed....in comfort!  I grew to HATE our recliner but have developed a fondness for it again now that I don't sleep in it every night.

Lisa

babs6287

Hi all

Just experienced quite the whirlwind.  Flew down to Fla (from NY) Friday AM for the wake, funeral, burial and party to celebrate my sister-in-law's life.  Still so sad- she was a very accomplished Dr-people came in from all over the world for this celebration. My parent's place was filled with family-the silver lining in all of this.  Then flew home Sat night because my office (I manage a derm/plastic surgery office) was having an inspection for Jt Commission  accredidation which I was in charge of.  Worked all day Sunday, an incredibly long day on Monday and was at work 630 AM for the inspection.  Well, we passed and got our best score ever!!!!  I am just exhausted.  My boss gave me Friday off as a thank you-that's my first fill.  Will report how do!!!!

Lisa-glad you finally have a definite plan in place.  It's very nerve wracking when you don't.  My MO ad told me that since my cancer was so aggressive and spread so quickly DD AC and then DD T was the best way to go so I'm happy you have the option to go that route too-we need our best chance to best BC

Honeybair-Great news-a good night of sleep at last!

Kbee-I saw my MO inbetween my chemo treatments-maybe you can re-schedule your appt so it's in between as well if that's what you prefer??

Wrenn-glad you're doing better

JennH8-sorry you'll have to do chemo.  But, we're all here for you

ndgrrl-happy you don't have to do chemo!

See you all after my fill!

Babs

Pam358

Lisa - WONDERFUL news on the healthy heart!!!  We will now be  getting our chemo the same weeks.

KBeee

Lisa:  Great news on the heart!  I am so glad that you have a definitive plan in place and can get the ball rolling.  The sooner it begins, the sooner it will be done.

Honeybair: Glad to hear you are sleeping better.

Babs:  I am glad you got to see so many family members, but am sad that it was under these circumstances.  I'm happy to hear that things went well at work, and that you got a much earned and well deserved day off!

Iam almost afraid to say it (waiting for the other shoe to drop) but I am feeling great!  I went for a long run/walk today; my longest in several years.  I was also told by my surgeon last week that he would release me back to full duty at work next Wednesday.  I talked to my bosses and they said that they don't need anything from MO; once the surgeon releases me, it is up to me.  I am not going to do any on duty shifts, not knowing how I will feel from day to day, and I will not do any firefighting which could put me at risk for pneumonia with smoke exposure, but we often have on call shifts come up, and are open...several times per week.  I asked what they thought of me doing some of those on days I felt good.  They thought it would be fine, and my co workers were really happy.  I love my job, and even to do it on a limited basis has me over the moon happy.  The nice thing is if I am not feeling good, I do not have to do anything.  Win, win, win!!!

Pam358

Kbeee - great news about you feeling well and about your job!! Over the moon happy is a very good thing!

babs6287

Kbee- great news!!!!!  Enjoy work.  I find that work keeps me going forward-it was a g-d send during chemo.  Just don't over do!

Babs

LiLi1964

Pam - yes, we will be on the same weekly schedule for chemo so lets keep in touch and compare!

KBeee - I am so happy for you that you seem to be handling all the SE's very well.  And that is great news about your job.  It is so helpful when our employers work with us so we don't feel like we have to over-do it to make them happy and thereby risking our well being.

Babs - glad you made it back and your inspection went so well!  You always seem to have a calming effect on my w/your posts.....just something about the way you write brings me comfort (so thank you!).

Wrenn - hoping, again, that your recovery stays on track and you don't hold back w/your posts because you are feeling "blue".  Remember we all started this journey together and we all care for you and what you are going thru; if you need to vent....take advantage and vent with us!  We are here to listen and we understand!

I had another expansion yesterday; twice as much as the last time and I've been up since 2:30 this morning.  I'm having insane muscle spasms.....I think too much was done but PS seems to want to get this expansion moving so there is the 2 month "rest" time before scheduling the final exchange (we had delays and we're trying to catch up to where I should be by now).  And guess what....I finally have the baby-boobs you all have spoken of!  Feels good - ok, it does NOT feel good, but looks good to at least have something bumping out in the chest area.  I'm going to reach out to doc for stronger muscle relaxer because what I'm taking feels like it is doing NOTHING.  Live and learn......

Hope everyone has a great Friday!

babs6287

Had my first fill today-50 cc We're going slow and easy due to all the radiation and the fact that all my lymph nodes were taken-so no skin on the side. It was much easier than I thought. We'll see how I feel tomorrow!

Lili-I'm glad I make you feel better-that's what we need to do for each other.

Pam-you can always PM me if you have any questions about your chemo-I'll answer any questions you might have.

To everyone-have a great weekend and I hope we all feel great!!!!

Babs

wrenn

I somehow seem to have removed this thread from my favourites so I missed some posts.This stress is making me stupid.

I am also not sure if I whined here about my internist saying I shouldn't do chemo right now because of the shape I am in with all that has gone wrong. He said he isn't sure the oncologist will go along with postponing but he will talk to him. I am relieved and nervous. I know my infection will get worse if I start chemo on Thursday as scheduled and I know I am not physically up for it but I worry that the onc will say delaying is too risky as is going ahead and say that I am no longer a candidate for chemo. On the other hand he only gave me a 10% difference in odds so might not matter. He said there was a 30% chance of it coming back without chemo and 20% with. Anyway, will wait to see what he says.

Lisa I am glad things are going better for you. It seems like everyone is doing as ok as we can hope for. I am inspired by you women keeping a good attitude and it is interesting to watch some go from despair to hope. This group really is therapeutic. Thank god for the internet. Wishing you all a good weekend.

Jo6202

Wrenn,

I have been following your posts on a couple of threads. I can't begin to imagine how hard this has been on you. I have had several set backs due to other health issues and have been feeling like this is never going to end. Then I read your posts and think I would have lost my mind by now. I have really been thinking about this and have decided our will to survive is the driving force that keeps us going. You are really an inspiration to me and I just wanted you to know. I pray for you to get some relief soon.

Blessings.

wrenn

Aw, thank you so much Jo. That made my day. I feel like such a whiner lately. I know it's good to vent but I think I have done more than my share here so it was nice of you to post what you did. I really feel for people who don't get the kind of support we get here. xoxo

Jo6202

Wrenn,

Please never feel like you are whining. This site is a great stress reliever. I think just putting our thoughts down among those who won't judge us is very therapeutic. Hope you have a better weekend.

LiLi1964

Wrenn - I second everything Jo said! You are not a whiner at all. You are frustrated and have every right to be given your long recovery and the set-backs placed in front of you. We all understand that and want nothing but the best for you so please let your feelings come out in posts here. There are no judgments and I, too, am amazed w/how well you've handled the long recovery (poodle-mum as well!). Yes, mine was long but with no complications! And I fell apart several times along the way; I can't imagine how far I might have fallen if I had to deal with the set-backs you have. It scares me to think on it! So please give yourself credit!


Remember, we are all friends here who started our journey together and we all want what is best for each other. Stress can be a bad thing, I'm told, with cancer. But it's also quite well known and accepted by the medical profession that we have a great deal of it with what we are going thru as cancer patients. Don't get frustrated over it (in my case that only increases the stress!) but get your feelings out to all of us here and please let your doctor know if you need something to help deal with the stress and anxiety.

I worried when I read your post on not knowing if chemo would even be a very big help (you said it "only" reduced your percentages by 10%). I say to you, 10% is a GOOD reduction and one I personally would favor on the side of going thru chemotherapy. You have to make that ultimate decision. But remember just because we are triple negative does NOT mean we MUST start chemo in that arbitrary 8 week timeframe. My MO assured me that is NOT the case; it might be preferred but it certainly is not necessary.

You need to heal, I think (but I'm no doctor! obviously!). I think I would let your MO direct the start of your chemo and forget what other doctors might suggest. MO's are the specialists here and their advice is what is most important and is what I follow.

I keep you in my prayers every day, Wrenn. I think many (if not all) women here do so please take comfort in all good wishes winging skyward for your benefit!

Lisa

wrenn

thank you guys. I am finding the support here even better than family support. I think my situation scares them so they tend to downplay things. They don't want to make me more anxious either so I tend to minimize what is going on but here I do feel comfortable letting it all hang out because you women 'get it'. I know you are all as afraid as I am with what we are going through. I don't think most people fully understand that this is a nightmare for us. I AM learning how to cope better with the inspiration I find here so thank you once again.

I hope everyone is having a peaceful weekend xo

honeybair

wrenn, so sorry that you are having to face such difficult decisions. I am inclined to agree with your internist because it is a well known fact that chemo does greatly reduce your white blood cells making it much easier for more infection or any other disease to set in.

I just wish you peace in what ever decision you do make and pray that your health will be vastly improved as soon as possible.

KBeee

Wrenn, You are not, not, not whining! You are dealing very well with a huge pile of curveballs that have all been heaved your way all at once. Every one of those curveballs bring with it a new set of decisions, and every medical professional feels they need to offer their opinions on those decisions. Those opinions often differ, and with doctors, sometimes their egos get in there too when we ask questions. It can lead to sooooo much uncertainty. I think you have done fabulous. As you think of concerns and questions, be sure to write the, down as soon as you think of them, so that all of the can be addressed. 10% is a huge reduction. Being on TC, I can say that my wounds have been slow to heal, so a little extra time to make sure you are healed and not at risk for further infection would probably be beneficial. These chemo drugs are strong. If the extra week or two of healing allows a few stray cancer cells to multiply, the TC will kill them. That's what it is there for. A week or 2 delay would be much better than none at all, and hopefully your MO will be able to see that. It will also give your whole body a chance to recover. I think if you are feeling healthy and stronger going in, your body will deal with the side effects of the chemo much better.

(((HUGS))) There are no easy decisions, but you are plowing through this and I know you will continue to do so.

wrenn

You women have helped me to form questions for my doctors. It makes more sense to me or seems more 'real' when it comes from someone who has been there or is experiencing similar things now. I am going to ask the oncologist to hold off another week or two and I am going to ask with confidence now instead of in a panic. I don't want him to think that I am just afraid of chemo. I was ready and bought the things I will need and intended to shave my head next week. I hadn't thought of the point that if any cancer cells grow in the next couple of weeks the chemo will get them. I have been telling the home care nurses about your people and I wish that everyone had access to the knowledge and strength shown here. Finding this site is a sign that my luck hasn't totally been flushed down the terlet. :-) xoxoxxoxoxo

LiLi1964

Wrenn, your luck definitely is not down the terlet. Good for you! It was in you all along but with so many things thrown at you one after the other it was no wonder you had so much conflicting thoughts. KBeee used the analogy of curveballs very well, I thought. So many curves thrown at you and look where you are now. That takes a strong woman!

Glad you got your confidence back....very happy to hear that.

I don't often say it in my posts but my husband would attest to the fact that I too have benefited greatly from this forum - and specifically the August 2013 Surgery thread. Everyone here is so supportive and we are not so big that anyone gets lost in the mix. And to interact with women going thru the same things at the same time....priceless! So I agree with you, Wrenn, this forum is literally a Godsend to some of us!

I wholeheartedly agree with your decision to hold off chemo and allow some further healing. It sounds like KBeee was the post that helped put things in perspective (kind of like Honeybair did for me this past week) - so good to have so many different women from all over the world being able to help out. It just takes that one person to put it in words you need to hear to help us see things better. Ten people can say the same thing but it's that eleventh person who says it a certain way that it finally clicks - always amazes me how that happens and it's great KBeee found those words that seem to clicked for you.

Keep the positive attitude! It's the first advice my doctor gave me after diagnosis and although we sometimes falter....getting it back is great and we need to embrace it to see us thru.

wrenn

I agree Lisa, It really helps to come here when we are struggling doesn't it? You've been thrown some curves too and it is a relief to see you bounce back. We will make it. argghhhh. :-)

LiLi1964

Amen to that, Wrenn!!!

poodle_mum

Just dropping in to say I haven't forgotten everyone. I'm keeping up with the email reading :-)

Tomorrow is our CIBC Run for the Cure. I've raised $755. I'm even more excited because it will be my first "outing" since August. It's been 7 weeks since my whole surgery issues started. Feels like longer. Everything is going not too badly. The left side is healing - we'll see what he says on Wednesday. This has been my first week without a hospital visit since this whole thing began in July. I almost ended up going in on Friday but I'm determined to make it through til Wednesday. I'm hoping he will re-open the right side to drain the seroma before my boob explodes. It is feeling tighter everyday and looks like a balloon is going to pop! LOL

I have to laugh now because I spent four days this week totally depressed about everything - hence one of the reasons I have not been online here.

Well, must go - hope to get an early sleep since it's going to be a long day for me tomorrow. Please pray that it doesn't rain. I can't afford to get sick but there's no way I'm missing this walk. I'm doing the 1k only.

All the best to you and I'm thinking of you all as you have to go through some tough decisions.

LiLi1964

Good luck, Poodle-mum. You've worked hard to get where you are at and what better place to make your big outing than the Run for a Cure. I'd like to thank you, by the way, for your contribution to helping all us who are end beneficiaries of your hard work. And with what you've been thru in your recovery....well, you are an inspiration, to say the least.

Get some good rest and enjoy your day tomorrow. Prayers going upward for good weather!

babs6287

Wrenn-I found this web site after my first surgery, my chemo, and my radiation. I wish I would have found it sooner but am so happy I'm here now. I learned so much more from everyone here than I could ever imagine. It's a perfect place to "let our hair down" and to be real. If you're like me, and I'm sure most of us are, we don't like to show our vulnerability. We don't want the people we love to see us depressed-it's put on a happy face to spare them so they don't worry. So be real, be mad, vent etc-that's what we're here for. We're all sisters in a major battle and are here for each other no matter what!

Poodlemum-only clear skies and a great walk for you tomorrow. You should be proud of what you've accomplished during a VERY difficult time in your life.

Kbee- your advice was spot on! Having been through chemo already it's best to wait a week or two to heal more. Chemo is tough enough as it is. Better to be stronger when you begin!

To all, good night and an easy weekend

PS Today I was feeling good most of the day- only felt a few spasms and lots of that tight feeling ,but no pain. Much better than what I expected! Maybe that's because I only did a small fill-50cc this time. Anyway, I hope that's the reason!

babs6287

One correction I joined last year when I was first diagnosed but didn't find the discussion boards until before my PMX this year

Babs

wrenn

poodlemum. Go girl. I'm impressed that you taking this on. Hoping for good weather and looking forward to hearing how it went. Sweet dreams

Babs. I know you are right and it really makes a difference to be able to let it out. I'm a single mom and used to being the tough guy but i was just out of steam. I felt bad for laying it on you guys but you are right. We are a special club that none of us wanted to join but here we are. Thank you for helping me be real.

Jo6202

poodle mum, thanks for running/walking for all of us. I couldn't do our local run this year but hubby brought it up that we should plan to run/walk next year. Putting that on my list of things to accomplish when I'm done with all this treatment.