June 2010 Mastectomy

Liz - I know what you mean about the 'big fat sacks"....I had the realization yesterday looking at a Lands End catalog that came in the mail, I was looking at swimsuits, I have a terrible time finding swimsuits that provide adequate support for my previously big & saggy breasts....and as I was looking I realized I won't have that problem anymore! I can wear some of those cute suits with a halter style. I am so excited about the prospect that I can't wait to start getting back to the gym so I can work on the rest of my body to go along with my new-to-be breasts....I got those cami's with pockets for drains (they were great when needed) and the puffers, I took about half the stuffing out but it was so odd looking down and seeing that "puff" that I took them out. I still wear the camis because they're really comfortable. I got 300 ccs at surgery and honestly it is about enough for me...Having said that I saw the PS today and my skin necrosis issue is "healing as it should" (which is way too slow for me) and I am to just keep doing what I'm doing, he says it will probably take about 2 months to heal so no fills until then. Have you been to the Oncol. yet & do you know what your chemo will be? I have been told there are many different combos and a lot they can do for some of the side effects, at least compared to a few years ago. I meet with the oncologist tomorrow so I will find out what he is recommending. My nodes were clean so may not have to go that route, but need to talk about hormone based therapy like tamoxifan.

Stlouiscardsfan - I think you a week before me so good to hear you drove for the first time - I was thinking I really needed to get out there but I just haven't felt like it. My goal this week was to drive the car but I haven't gotten to it yet. How soon did the rest of you drive?? I forgot to ask the PS today, but I know he will say "when you feel ready", and of course when you're not on pain meds.

Hope everyone is having a good week. Yesterday was my first pretty bad day in about a week. I just didn't feel like doing anything and had a lot more pain than usual. Oh - also, I don't know if any of you have had this problem, but I have had the hugest stomach area, I keep looking at it thinking where did this come from? I don't think it was there before the surgery...and I don't think I gained weight, I asked the PS and he said blame it on gravity...I guess the swelling and fluids move downward. I noticed today that my jeans were looser and not strangling me in the waist so I think it is getting better. Mostly I've been sticking to workout type pants with an elastic waist....

jane

Liz - you are to funny! Chemo is doable. As you have probably seen - there are threads for that and they are very helpful. The most important thing while doing Chemo is to stay hydrated! I was drinking like 9 to 10 cups of liquid a day, water mainly.

I am not sure why I decided to drive today of all days, it is only 109 heat index here in wonderful St. Louis, as I am sure it is hot a lot of other places as well. I had a hard time turning the wheel, so I did the wheel/hand scoot instead. Plus the seatbelt hurt - need to find a small pillow to put between that and my chest area. The belt was rubbing the te's, ouch!

As far as weight and stomach bloat - seems to be gone. All the pants I tried to wear my first week home and which didn't fit, now fit again, and a few are to loose now? It took about 3 weeks for it to finally go away - so be patient. I am up to 35 minutes on treadmill, and now walking at 2.8 mph. My goal is to get back to 3.5 mph which is what I was at pre-surgery.  I just want to be able to move my arms again. 

Hum - physical therapy...my PS is supposed to give me a reach to recovery book at my next appt. Exercises I am supposed to do to get my arm movement back. I am more than ready!

Liz - as reference - my hubby walks 4.0 mph, incline #4 for 35 minutes. He walks so fast it is crazy. When we are out walking in normal weather, I have to remind him to slow down. Our dog loves to walk fast as well. Poor me, I am just trying to keep up. During Chemo it was hard, as I moved very slow about 10 days out of every 21 day cycle. Would get back to normal and bam - get hit again with another treatment.

Jeanne - glad you saw the dr and got something for your throat! Take care of yourself!

I got two little poofy things as part of my pre-surgery pack. I used them this past Saturday inside the sports bra that I have been wearing. Problem is there was no pocket to keep them from moving so I had to adjust them once or twice. I didn't really seem much of a difference with them, could be that they were so small. The package said size 0, whatever that is supposed to mean. 

I found a cute hat at Target today - on clearance - and it gives me more options for when I go back to work. I seem to be wearing my pink STL ball cap out! I am not ready to go topless yet, hair still way to short! Although it has been handy with the hot weather we have been having, but I am so ready to have hair again!

Anybody watch Big Brother? 

Jeanne- wish I had room service, too, today...with a tray of margaritas!!

The chemo....cytoxan and taxotere.   Hair loss and nausea...great!!!!!!!!   The news just keep getting better and better!

The next part floored me:   they want to RADIATE!   I could not believe it...for 2 dirty nodes they want radiation?   I am recalcitrant.   I guess, though, the cancer was not only in the sentinel node but,for lack of better words, had started busting out of the node.  In any case, there were a whole host of other tests and scans mentioned and I unequiovacally said forget it.   If I have 3 years left on the planet I am not going to spend it flying around the medical industrial complex. I don't need them checking my whole body over looking for more "stuff" to poke and prod.  No way.   This is all quite enough right now.

I am moderately disgusted, I must say.  Bmx w/immed recon, chemo and radiation?  WTF (for those of you sensitive to the general accepted understanding of the "F," fig works just fine!)???

Oh girls...usually I say keep smiling, it works but today I am going to close with keep smiling..it works and if it does not, start drinking!!!!!!!!

Liz

Hey,

Please add me to the group of June Mastecomy's.  I am Cleijo Gesin from Harvest, AL which is right outside of Huntsville AL.  I have joined the group but haven't logged in a couple of weeks.  I had IDC which was detected by a breast reduction and saved my life.  I had a bilateral mastectomy on 12 June with immediate reconstruction (TE).  My total BC was 2.1cm with .7mm in my SNB.  I have CT scans in the morning for lungs, liver and pelvis and prayer everything comes back clean.  Then meet with the onco again to discuss the treatment.  Looking at 4 chemo treatments 3 weeks apart.

 Love this forum!  Very inspring and it is nice be able to relate to each BC lady and their story of survival!

Cleijo

Thanks everyone is so nice and supportive here!  It is great to have some encouragement when your going this stuff.  I am surpised at how many negative stories and comments you get from people and friends when they ask questions.  I have had numerous people ask why I chose to have the double mastectomy instead of just the one with BC.  I had to go into a long story of how I don't won't to worry about it coming back, both my aunts had IDC, etc...I am sure you ladies have had similiar situations.  Thanks again for the hugs, support and encouragement.  I will tune into the chemo discussions soon.

Liz: I want to thank you for all of your posts and for sharing your feelings about what is going on. I think we can all empathize when it feels like one thing is piling on the next. That said, we have wonderful examples of how well everyone has done with chemo and radiation. It is not what you would choose, but it is going to get rid of any cancer cells that might have escaped your lymph nodes and you are going to be rid of this thing!

I had a malignant melanoma last year that was staged as a IIB. That is the gray area between grim news and lifetime worry. I have to have the Pet Scans and the MRI's etc regularly related to that condition, so I understand how you feel about them sending you in to look for more problems. I have struggled with dealing with these appointments and it ruins two weeks of my life every time they come around, one week dreading the test and one week dreading the results. Since I received the breast cancer diagnosis in May I have worked really hard to view this whole cancer thing as an illness that can be managed just like diabetes or heart disease. I am now trying to look at the test as nothing more than an early warning just like my mammogram was so we can identify the problem and take care of it the best we can.

Those tests are just tests. One more thing that you are going to do and get behind you. When the tests are done, you will no longer have to worry because you will know that you have beaten the cancer and you can enjoy the rest of your life. Shelley

Cleijo, I had 4 rounds of chemo 3 weeks apart.  I am more than a year out from chemo and doing great.  I had AC (Adriamycin and Cyclophosphamide), it wasn't fun, but it was certainly doable and you'd be surprised how fast the 3 weeks in between go and before you know it you're done.  If you end up getting AC and you have any questions, let me know.  Good luck on your scans tomorrow

Liz: I am so sorry to hear of your terrible horrible appointment with your doc. It sounds just downright overwhelming and unfair. It reminds me of when I first started this process, that first mammogram when things just kept going from bad to worse. But you are obviously an incredibly smart and strong woman with so much going for you - you'll figure out what you need to do and you'll do it. It has helped me to "compartmentalize", what do I need to do today, now, to be healthy. What is the next step, take that step, etc. I do want to share w/you my radiation story, which was 9 years ago my first time around w/BC. I had DCIS & the prescribed tx was lumpectomy and radiation. I had 6-7 weeks of daily radiation, at the time I had a 4 y.o. at home. It was very doable, and I had very limited side effects from the radiation. They have improved radiation since then tremendously, they are able to focus it much more on the needed site. Is it the nodes they are talking about radiating? This time around, my BS who I respect and is very knowledgeable & has done lots of research over the years, told me that because of the radiation, it was likely we would discover my CA had not spread into the lymph nodes, as he explained it slows down that process by maybe damaging some of the pathways the cancer would take to get out of the breast. So it is likely that because of that radiation 9 years ago my cancer is as small as it is & limited to the breast. The thing is - do your research, have doctors you trust and respect, listen to your gut, & then go do what needs to be done. It sounds like you are covering all those bases. I love your running idea. St. Louiscards has me back on the treadmill too....maybe we should work up to a marathon? Here's another positive spin on the jogging thing - no more boobs flopping up and hitting us in the face when we jog!!!!! Your great sense of humor is a plus and I think humor is a great way to cope with what we're faced with.

Melissa - thanks for getting back to me on the skin necrosis thing. I saw PS this week and he says it is slowly healing but I need to be patient, he expects it to take about 2 months. I can do that. I am getting used to the way it looks.

Today I am going out in my car. I have a little to-do list. I feel like I am becoming a hermit and really need to venture out somewhere besides a doctor's office with my DH driving.

You're all in my thoughts as another weekend is  upon us. What a remarkable group of women!

Yes, MO is Missouri! Although I am originally from Illinois - Chicago area.

Liz - I hear you on the tests, they really aren't that bad, none of them hurt per say. And, they give the dr's a good idea of what is what to tailor the treatment regime. Ask if Taxol is an option to Taxotere. 

I keep walking the treadmill - and actually enjoy doing it. This will really age me, but I walk during old re-runs of Beverly Hills 90210. It is amazing how quickly the time goes by. I am up to 45 minutes now, and don't plan to walk anymore than that. The treadmill lets you plug in your weight and it calculates based on speed how many calories you are burning. I am still not moving my arms as I am not at the 30 day post surgery yet. I am hoping to get the go ahead next Tuesday to start moving them and working the kinks out.

It seems my under arm poof is almost gone, although the skin under there is very tender. Also sore along the breast bone. I plan on asking PS about this, but believe it is the te causing this, and the nerves are not cut in these areas. The damn sports bra strap is rubbing on my port also, so I have to tape it to keep it from rubbing.

welcome to cleijo and skmmingalong 

Ducki: Glad you got your first fill!  I can't believe you got filled with the drain in?  I have one more coming out Tuesday and I would hope he could do my first fill then as well b/c I really want to get those fills in before chemo starts.   BTW, the chemo doc's office never called to set up all the follow up appts like date-to-start, port placement, etc... and I am in no rush so I will just wait...for a bit anyway!   The assistant was on lunch when I was leaving the other day so they left it that he/she would call me back...I will be waiting!!!!!!  Also, like StCards said, ask them for Flexeril as it will definitely help you.

StCards: you should whack me with a nerf bat!!!!!!!!  First I tease u about baseball and I know St. Louis is in Missouri and I know the Cards are the St. Louis team and I have to ask you, in a roundabout way, the abbreviation confirmation for your state!!!!!!!!!!!  holy smokes!   My mind is already going!!!!  Consequently I have a Weider double station gym with a total of 600 lbs of stack weight, a flat bench, an aerobic step, several yoga balls, gym flooriing, a recumbent bike, an upright bike and a stairmaster (not the high end one but it is ok) but I never got a treadmill.  Now I am going over my finances to see if I should get one!!!!!!!  he he he!!!!!!!  I really wish I had one now plus I like to walk backwards on the tread (glutes!) and I will look a bit odd walking backwards up my naturally sloping front yard!!!!!!   I am really glad you are doing so well.   Good for you.  Question on the taxol: What is the advantage over taxotere?  just wondering and I am sure there is one.

JBL: yes, I am doing my homework and trying to get a plan together for this marathon to take over StLouis...oh...I mean on what tests to take and if I should get radiation!!!!!!!!!!  My initial reaction was emotional but the VNA was here today and she told me radiation is laser accurate now and that I should not be worried about it affecting my heart etc.. and that it will strictly target those pathways that are the natural progression of cancer "leaking" out of my sentinel node.   Thanks for letting me know that your recurrence, which I am so sorry you have gotten, was easily managed and small as a result of the measures that you allowed them to take then.  You are all making sense and getting through to me.   Yesterday was just a deluge of information and the preponderance of which I did not want to hear.  It was upsetting but in the end I am sure I will do the tests etc...  They also reassure me that I am moving beyond this.  I know me and if I don't get these tests I will secretly fear I am cultivating cancer in some nook or cranny of my being and it will drive me crazy.   Thanks for your injection of logic, however, much appreciated.

I hope everyone has a nice weekend.  I plan to ride my recumbent bike, walk 3 miles and get some sun ...and then sleep, of course!!!!!!!!!!  Is everyone getting passed the post-operative tiredness?  It has been 3.5 weeks for me and I can still do some sleeping.   I don't know why.  I wish I was just doing the 8 or even 10 hours but instead I can take some afternoon naps for another 2-3 hours.   I guess I must need the rest but I am, in a way, getting a little concerned about my love of head-to-pillow!

Liz - just sent you a PM about Taxotere vs Taxol. 

 and for the other part - I blame Chemo brain. Oh wait, you haven't done that yet

No worries, must be all the gummy worms.... 

Liz- I am so sorry you had such a rough appointment and was feeling like things are getting the best of you.  Your most recent post sounds like you have bounced back to your positive self.  I like the box idea, I never realized it but I think I do this alot myself.  My mother had BC, advanced stage IV at diagnosis.  She was on chemo pretty much constantly for 5 years and had radiation, to various areas three times.  You are looking for positive treatment stories?  Well, although my mother passed from BC she never skipped a beat through treatment.  She never threw up because of chemo.  There were times where she might not have felt like eating, but she was proud that she held her "title" as she put it that he had not vomited in 20 years, not even chemo took that title from her.  She hiked the Grand Canyon on chemo, she danced ALL NIGHT at my wedding on chemo.  She did have other side effects bit she always said they weren't that bad, more annoying.  She also said the worst part of radiation is having to go there everyday, PITA!  You will rally and do beautifully.

Stacardsfan- Yeah on you driving!  I drove this week too.  It feels liberating doesn't it to leave the house alone again?  Even if it is just to run quick errand.  Also glad I am not the only one that is having pain on the breast bone.  Mine is also really sore in my rib cage and where they took the SNB.  I was told it is all normal.

Ducki- Congrats on your first fill!  I hope you continue to heal and don't have to deal with being aspirated when the drains come out.

Jeanne- I hope you are feeling better and that your sore throat has left you.  It must be  frustrating to feel sick on top of all you are dealing with.

Welcome to Skimmingalong and Cleijo.

Well, I think I have been over doing it a bit myself lately.  Just little day trips for 2-3 hours with the family with some walking, not alot maybe an hour or two and at a slow pace but man- I think I am done.  Under my right arm, that had the SNB, aches and I can barely use that arm by the end of the day.  Tonight the left side hurts too because I was trying to give the right a break.  My husband goes back to work this Monday and family will be helping to take care of the kids.  Some of the family wants to watch the kids at their house so I will be alone three out of five days next week.  At first I was sad to be left alone, but now to be honest I think I need the break and the rest after trying to keep up with my husband and children.  We are heading out to meet friends and take a train ride around the lake tomorrow, so one more long day, but it should be fun and not too much walking.  

I'm sorry if I missed anyone in my post, I skipped a day and missed so much it's hard to get it all in!  I hope everyone is doing well and has good spirits.  Strength and hugs to you all.

Ducki: I don't know what I am talking about!!!!!!!!  I don't know if it is good, bad or generally accepted practice but you filled me with hope b/c I only have 3 fills and then I am done until the exchange.  Unlike you all, because of my chemo and now radiation stop, my exchange won't take place until December!!!!!   When I read your post all I could think was he is taking the last drain out on Tuesday so maybe he will do a fill Tuesday and then another one the following week.  This way I only 1 more to get that has to be done one day before chemo.  I really kind of want the fills out of the way before I start chemo but I don't think that is going to be possible because the chemo, I think, is going to start July 30 or the following week on/around August 5th.   Your story gave me hope!!!!!!!

Laurie: thank you so much for sharing the story about your mom.  I never thought I was the kind of person that could just take it all in stride but that is one thing bc is teaching me.   Your mom had a really full life and never let bc stop her.  I don't plan to let it stop me and I will let them do all their tests and hope for the best.  Yesterday it was like a truck hit me especially when there was no one my age sitting there but alas I will be ok.   Thanks so much for sharing and it seems like you are doing great so congratulations to you.  BTW, my breast bone hurts also!!!!!!   It seems like I am wrapped up in some other tumultuous nonsense and fail to concur on the shared symptoms you all discuss.  I am going to make it my business to be more forthcoming and let you all know we are all going through the same things!
Liz