Need some encouragement....

Schoolmarm, Your post is so powerful that I'm concerned I couldn't possibly answer it sufficiently.

You've described so well the suffering, humiliation, the collateral damage, the lack of support from physicians (quit blaming the next guy, and just help) and the exhaustion that comes with this treatment.

I think right now, it's overwhelming--and the only advice I would offer it to try and break it down into managable steps: 1) The lymphedema--it hurts, requires daily care, and threatens your violin playing and everyone is playing the blame game--of no value to you, 2) the physical effects of the herceptin--will it be over soon?, 3) the absurdities and humiliation of the medical system--being exposed and cold, all these institutions that can't use your port (not okay--get a supply of butterfly needles and bring them with you), 4) the loss of privacy--in all aspects, 5) the fear that you'll never be attractive again, 6) the fact that co-pays don't count toward out of pocket expenses--big loop hole, right?--be sure and deduct those expenses.

It's TOO MUCH.

I think as treatment starts to wane, and testing frequency drops off, some of this emotional fallout will get better.

You're both in warrior/treatment mode and survivor mode and it's just plain exhausting.

You have every right to want your personal modesty respected, and all of your concerns are very, very valid.

I'd love to break the situation down into small, managable bits and tackle each one--and the whole time saying "You don't have to be a good patient. You don't have to just be grateful--you can be upset and angry and grieving."

I hope some of that helps, and the women on this board are amazing, and I'm sure they'll come along with wisdom and support.

For me, lymphedema involves grief, and I don't feel very positive toward my surgeon or rad onc, as neither helped me or acted in a way to prevent it--when they had the opportunity. I'm grateful to be here and have gotten live saving treatment, but that doesn't negate the fact that I incurred a chronic disease along the way, and the treatment impacts the quality of my life. 

@##, but I miss feeling "healthy".

Kira

  Hi Schoolmarm.   You have come to the right place here.  I have found such support with my sister's here.  Things I have been through, most of the time other's also have been or are going through.  Sometimes not 100% of everything I have gone through another has, or vice versa.  But what a source of suppot and encouragement folks on here have been. And you are not a baby or whining...we all have our days-at least I surely have, and still do.

   I did not have Chemo or reconstruction, as I was ER+, PR+ and HER-, my Oncotype score was low ect.  I chose to have a Mastectomy-both removed without reconstruction.  This is a very personal choice for each woman, but for me it was the decision I was comfortable with.  My decision was based on:  I know myself and, to be quite honest I was terrified of Rads.  Maybe because I heard way too many horror stories.  Though I now know there are those that come through Rads okay and either don't have many SE's or, they are not real bothersome to them possibly.

  I also have been married 27 year's.  And my husband said to me, "I didn't marry you for your upstairs equipment, with or without the upstairs is not going to change my love for you." 

   I don't mean this as discounting how you are feeling but, you know what there is sooo much more to all of us than " our breasts!'  Really there is.   We have personalities, have been through more than many other's that are healthy for the most part, we have compassion, we are sensitive,caring,warm,intelligent. You are BEAUTIFUL just as you are!!   

   I also am very modest.  I do occassionally go for messages due to other medical issues, with my cervical area but, I see a woman who is also a BC survivor herself.  So she was not floored when she saw my chest/breast area.  Could you ask them to cover you at exams and other procedures they do?  I realize when you see your Oncologist at your appointments, this would be hard to do but for other procedures would this be an optiuon maybe?  Here when I have had various procedures done-X-rays, CT Scans, Bone Marrow Biopsy ect I didn't have to ask-this was automatic but, at my family practioner I have asked for a blanket/covering if I needed to.  Just an idea. 

   I am thinking about you, hoping for comfort for you.  Remember you are beautiful!

Schoolmarm, your post touched me so much.  I can so relate to what you feel.

 I went through all of the cancer/le stuff last year - beginning in February.  I had a horrible time dealing with it.  After a bmx, I felt like I had been knocked down hard, but I was on my way back up.  Then LE came in April and I felt like I had been run over.  For six months I toughed out the pain, mental and physical.  Then in Oct. I called my onco. and talked to a lovely, lovely nurse about pain meds and counseling.  I started taking something that wouldn't turn me into a 'dope fiend', as my grandmother would have said, and I started talking to a wonderful counselor about all of the crap that I was dealing with.  Kira said it so well....all of it is just too much.  And when you throw in being in constant pain, it just begins to wear you down. 

 The good news is that I am in a much better place now.  I'm happy, and enjoying life for the first time in a long time.  I don't feel like a freak, even with my scars and my big, puffy arm.  I think I'm pretty darn cute.  The bad news is that I have lost all modesty and would probably show my dentist my chest scars if he really wanted to see them.   

It gets better.  It's such a biotch, but it does eventually get better.   Please hang in there and know that as miserable as you are right now, it won't be this way forever.  The women on this forum have been such a huge help to me...I am praying for you and sending good thoughts to you.

Edited to add:  I got okay with my physical self when I realized that the SOBS who think I'm unattractive now wouldn't have liked me when I still had breasts.  And if my having boobs is the difference between someone thinking I'm attractive or not, then screw them.  I am sorry to be so hateful, but that's just how I feel. 

I have no idea what you look like physically, Schoolmarm, but I read your post, and I know that you are a beautiful, sensitive soul that any man with any damn sense should be thrilled to get to spend time with.

Also, I'm very sorry for the swearing.  Blame tamoxifen.  I'm nuts this week.

((((((((((HUGS)))))))))

We have all felt the same way at one time.  I am so tired of my arms hurting and doing the MLD just makes them hurt worse.  I have frozen shoulders, torn rotator cuff on the LE side, and the other side they think I have torn something too.  

Dear Kelly,

Please let me reassure you that Binney is so right about the gentleness of LE massage.  The expression I have read here is "like petting a kitten", and though my therapist was a little more firm than I would be with a kitten, there is nothing painful in doing MLD except the arthritis in my hands, and that helps me remember not to press too hard!  

One day at a time is really all we have anyhow, and that is an excellent approach.  Please know that many of us are here every day and many of us several times a day, so know that we are here for you when you need us.  We all need each other, and this board is a lifeline to us, including you.

My LE therapist had me keep my clothes on and learn to massage through them, though I find it easier to do my own MLD on bare arms and abdomen.  It was a very respectful process.   

Dawn 

Ah, Kelly, you have come to the right place! We are ALL "consumer consultant specialists" about our care. HEAR US ROAR! We educate everybody in sight about our needs, and if they roll their eyes at us we bury them in pages of research studies to prove our points. NUTS to those who would heap on the degradation!

We've got your back!
Binney

Schoolmarm, When I feel as you have written, I am on overload.  And when I'm on overload, it's hard to make sense of things in any kind of orderly way. Since I like order, as you do, this is very uncomfortable.  I was very charged up about having LE and having to go in for massage initially. My LE therapist is soft spoken, very zen, and mentally flexible.  She put up with my tense rantings as I sorted through things while she gently worked on me.  LE's massage confused me, which made me feel even crazier for awhile.  It just would not sink into my brain initially. After awhile, the routine started to make sense, I read more about LE here, patient thread members gave me good answers and some order began to appear out of the chaos.  This takes time, and it takes patience, which is hard to come by when we have been through various stages of crisis with cancer and LE.  I am glad you are here and I hope you feel at home and comfortable with all of us on this journey.