September 2014 Surgery Sisters

Mariejune - you should not be doing any exercises without your PS telling you it is okay - especially in light of the issues you are having.  You having internal healing going on and you have no nerves in those areas so you cannot tell that you are causing damage with the movement.  Right now you should be using your arms like a T-rex - meaning keep them close to your side and minimal moverment.    I was not allowed to do any exercises for over 2 weeks and then it was just tiny slow movements.    

Smitty - it does get better and one day you will be here telling someone else that like I am now and the pain will be a distant memory.  

I lovecoasters - chemo is scary - but again you will get through it.  The first time I went to the cancer center and saw the chemo chairs is when I cried the hardest - right there, right then - the nurse taking my blood didn't know what to do.  That fear went away and was replaced with dread of the next treatment.  However, please know that everyone is different and some have very minor SE's from chemo and get through it fine.  I never once was nauseated - they gave me great drugs to prevent that.  I had other issues but my biggest fear was nausea in the beginning and that never came.   Just take it one  day at a time.   

People do say some pretty dumb things to us when they find out we have BC.  Forgive them - they just don't know what to say and are looking for ways to make us feel better.  Unless you have been there you just can't know or understand - so just smile and walk away.  If they are close family or friends - explain it to them - tell them that although you know they mean well that what they just said is painful.  ALSO - it is important to let your family and friends know that it is OK for you to be sad and mad - it is normal and they need to allow you to have those emotions.  We are grieving - we have lost someone and it is the old us.  

Also - anyone is welcome to add me on FB - Linda Schaner - picture is me without much hair LOL.  

Coming home from the hospital I was told I needed to be up and moving a minimum of 30 minutes per day. (moving about the house, etc) Stretching to keep my range of motion (reaching for things, doing my range of motion exercises, but stopping if it hurts.) I already had a lot of cording after my LMX back in April so we knew this would be a problem after this surgery. Already, even with stretching, I am loosing range of motion and can now feel the cording on my other side, all the way down to my elbow. Still, I agree that with the troubles you've been having you need to get cleared by your PS to be doing the kind of movement you've been doing. 

I have been in education for 25 years. Well…ok technically I quit 10 years ago. I never wore a hat or head covering during chemo while I was in my kids' schools. One of their ESY teachers was also going through chemo and never wore anything on her head either. Your students and co-workers will only be worried about your appearance if YOU are worried about it. When I was in my kids' schools (I have 5 kids with Down syndrome, I'm at school all.the.time. ) kids would ask their teachers, "Why does Asher's mom not have hair?" The teachers would stumble with their answers. I always jumped in, matter of fact with an "its not a big deal" tone of voice. "I have to take medicine to make me well. Sometimes that medicine makes your hair fall out. Not a big deal though. It'll grow back in a few months." You know kids, they just need a quick explanation and they're all good! 

As far as clear thinking, there were certainly days when chemo brain was a problem for me! It was the worst on days 1-5 of treatment. I had my treatments on Thursdays which would be day 1 of the course. I was "up" on steroids for days 1-4, then would crash on Monday-Weds when I had my worst days.  I was honest with people, "I'm sorry. I'm really very foggy at the moment. Can you give me a few minutes? I set an auto reply to my email telling people to expect 2-3 days for a response. I started a new file in the email inbox "too foggy". These were emails that I read but was too foggy to really understand them or to give a coherent answer. I would move them to that 'foggy" file, knowing in a day or two I could respond better. If you are up front with your coworkers, they are much less likely to question your ability to do your job. Chemo brain is usually temporary. I'm now two months out from my last treatment and I'm clear headed most of the time now! I do have some occasional problems with word retrieval. When this happens (like in the middle of an IEP meeting a couple weeks ago) I just say, "I'm sorry. I sometimes have trouble finding the words I need, but here's what I'm trying to explain…" Everyone is very understanding. 

I have a blog post up about telling my kids I have cancer. 

I get it about the financial fears! I have been extremely lucky and have not needed to worry about my medical bills. Are you aware of care credit? It is a loan specifically for medical care. It may be easier for you to just have to make one payment one one loan then trying to keep track of everything. Just a thought. Hugs to you, and hang in there!

I sleep either in my recliner or on my bed. If I'm on the bed I'm propped to semi-sitting, plus pillows under my knees. I usually switch sleeping sites about 1/2 way through the night. 

I am 16 days post-UMX. I was definitely counseled on the risks of frozen shoulder and specifically cautioned against doing too little with my arms. My BS told me not to be afraid to do this, and that her patients that do so tend to bounce back from surgery more quickly, are less painful overall, and are off pain meds sooner. There could be a bit of circular reasoning here, of course, as those women who experience less pain in general will also move around more and get off the meds sooner. But my discharge notes specifically advised me to try to use the arm for normal things like hair washing, very slow and gentle stretching, occasional non-strenuous reaching, etc. but to be sensible about it and not do anything that causes immediate or delayed worsening of pain. A bit of Googling led me to the American Cancer Society's recommendations for post-op exercises and I was comfortable following those guidelines without specifically checking in with my PS. To be honest, I have tweaked myself worse levering myself out of bed in the morning than I have with any of these exercises - the worst pain has been the morning "burn" as I slowly haul myself from horizontal to vertical and everything shifts downward. It is possible that absolute T-rex immobility may indeed be the ideal thing for the boob reconstruction or healing of the pocket, but there is loads of evidence that light use/stretching is beneficial so I think a more holistic view is warranted. From my perspective, the consequences of short- or long-term arm/shoulder dysfunction are infinitely scarier than the possibility of having to keep my drains in a bit longer, or something. I believe some early movement also helps to reduce the risk of lymphedema, though I haven't reviewed that literature specifically.

Despite being pretty mobile with no significant baseline pain or arm mobility issues, I am suffering an annoying type of discomfort that I haven't seen many people write about. The MX boob needs support to remain comfortable while walking, as any degree of bounce drives the lower edge of the TE painfully into the bottom edge of the breast. But of course there is NO kind of bra, camisole or other support system that does a good job of this without creating new pain/discomfort by pressing on the incisions in my IMF, or along the tender upper edge of the TE that is right beneath the skin of the upper pole of my breast (my TE is over the pec muscle at the moment). I have probably spent more $$ on bras and such in the past week than in the past 20 years of my life! Catch 22, and I find myself unconsciously addressing this need for more support by lifting/tensing my right shoulder and arm to pull that lower edge of the TE upward and provide some breast support from above. Or tuck the arm under the boob to provide a bit more support. Done full-time, however, my trapezius muscle gets crampy and all of the muscles of my shoulder and upper arm get ultra-fatigued and shaky. It is driving me crazy because I am otherwise totally recovered enough to resume a bunch of computer work-work that I need to get done, yet this noodle-arm thing prevents me doing so. It is weird and unexpected and I feel silly complaining about this when so many of you are in actual serious PAIN. Mid-week I am getting some or all of the air pulled out of the TE and some saline put in, so I'm hoping this will help to shift the TE in a way that its lower edge becomes more comfortable and I can better tolerate some kind of bra/support system that will allow my arm a rest. I still have 1 drain in, so I suppose it's possible that it's the drain cutting into me rather than the TE. Don't think so, though.

I'm 19 days post surgery and I'm happy to say the worst is over. The first couple of weeks were tough, but as others have told me, I'm now telling you - it DOES get better. I was scared that the discomfort and tightness of the tissue expanders would be too much for me to handle for however many months it would take. But after my first fill, it got better. It's still uncomfortable and there are twinges of pain now and then, but it's much more tolerable now. My mom went home last week so I'm on my own again. It's been good for me to make my own breakfast, go out with friends, run my own errands. I've decided I'm tired of waiting to live my life so I'm doing what I want to do, within reason.

The only downside is that I still have two drainage tubes and my output hasn't decreased. Tuesday will be the 3-week mark and I don't think the surgeon will leave them in beyond that, regardless of the output. I'm planning to go back to work tomorrow. The only think I'm nervous about is finding an outfit that will adequately hide the tubes and working out something with a bra and something to stuff it with so as not to draw attention to the fact that I suddenly don't have boobs. 

One day at a time. One milestone at a time.

P.S. Flannery, there are pros and cons to going through treatment as a single woman. For example, I don't have kids to worry about. That's a pro. But, for the most part, I've had to work, do treatment, and still do the household chores (laundry, groceries, vacuum). Some days it was just too much to be on my own, but other days I was glad that I had the apartment to myself and I could have a meltdown whenever I wanted. Family and friends are always willing to help, but I've always been very independent.

Jbdayton: 9/29 Revision Fat Grafting (Right) :::BEST WISHES & *~*~*Rapid a Recovery Dust*~*~* I pray you have an excellent outcome & are pleased with your results. God Bless (((((hugs))))

enlm20: 9/29 BMX w/ Reconstruction ::::I pray your surgery goes well today, & you are able to sail through it, get well soon, take all those pain meds via pain pump every 15 minutes (getting behind is VERY "not good" lol). Best wishes today! My thoughts & prayers are with you as you get the same surgery I had. Wishing for GREAT results with excellent pain control for you. God Bless you my friend. ((((Hugs)))))

I'm on my way ladies, really really wish I didn't have to do this, but I do. I'm grateful I know it could be worse. I ask that you continue to pray for me and thanks for thinking of me on this day!

That's a cute little bus! It won't hold many of us, though

Best wishes for smooth sailing for enim20 and Jbdayton today, and in case I'm not back for a while, all the best for tomorrow's Sisters, Minivan and Lisa84!

I think I missed the bus but thinking of you jbdayton and enim20!   Speedy recoveries!

I read this on your Facebook. I feel so sorry for you! I took a shower yesterday, of course from the waste down and do not know how I made it back to the bed and I blacked out. After reading your story I am going to be much more carful!  You poor girl. 

Update.  Got back home about 3pm.  I am doing ok so far.  PS told DH he filled the upper quadrant, some in the underarm breast area and pulled up the lower incision that healed to the chest wall and put some fat under that.  My abdomen looks like a half erased chalkboard (black board).  He apparently took fat from upper abdomen and sides even slightly in the back.  Ended up with 1 drain in the fat grafted breast.

Of course all is tender.  I think I have finally recovered from the anesthesia.  No problems with nausea.  Yeah!!!!  

Going to grab a small bite to eat, take my meds and then I probably will get sleepy again.

Thanks to everyone for the prayers and best wishes.

Enlm20 continued prayers and best wishes to you through recovery.

Minivan and Lisa I will have you In my thoughts tomorrow for very successful mastectomies and of course healing.

Oh dear, it's gotten a little rocky around here, hasn't it? In spite of these "scenic detours" it sounds like everyone is headed in the right direction. Let's have smooth sailing from here on out. You're almost there, September girls. Finish off September with nothing but good news. Kisses and gentle hugs to Em and Jb as well the others trying to heal.

I'm on the Pink Bus tomorrow for Minivan and Lisa. I'm bringing margaritas and nachos.

I haven't been on in awhile, trying to prepare for my port surgery on Wed then chemo on Fri. Hope all the ladies that went in today are doing well and those that are out, my thoughts are with you for a speedy recovery.

I too am on FB I'm "Jules" for anyone interested.

Good luck to minivan and lisa84 tomorrow!

Hi ladies.. thanks so much for your thoughts and prayers. In a little pain but it's manageable. Just want you guys to know if it wasn't for God and you ladies things would have been alot harder. I've remained calm because of you all, I was able to be strong because of your strength. I pray that you all are tremendously blessed. As our journeys continue, I wish swift and uncomplicated healing for us all.

Lisa and Minivan my prayers are with you on this day, That everything will go smooth for you two! 

Also they found No Cancer in the nodes! I'm truly grateful.