My Little Bs Have the Big C

A Breast Cancer Blog For Young Women

When To Give Up

13 Comments

i_won__t_give_up_by_insaneymaney-d5dqbvuAs I’ve mentioned in the past, I have been dealing with axillary web syndrome (cording) and swelling, which is possibly lymphedema as a result of my breast cancer surgery and subsequent treatments (radiation, I’m looking at you here!).  I have been in physical therapy for several months now to try to help.  Unfortunately, there has been absolutely no relief with these side effects.  They have persisted and even gotten worse.

The swelling has not gone down and, in one part of my arm has even gotten worse.  The cords that I’ve had since the beginning are still there and won’t snap or dissolve.  Bandaging doesn’t help, it makes it worse and has even spurred new cords to form.  So does stretching, both by myself and manual (done by the therapist).  New ones have formed as recently as last week, in my thumb, down my wrist and into my arm.  This has been a source of extreme frustration for me and my physical therapist.  We are literally at a loss for why this is happening.  I am in some pain (I can still get on with my day) but the fact that this is getting worse again is scaring me.  I don’t know why this is happening and no one can help!!!!  Why does this happen?  Why won’t it go away?

Last week, my physical therapist, who I love and has been working hard to try to figure out how to make these “moody” (her words) cords go away, told me that she feels like she has done all that she can do and that we should bring our meetings to a close.  In light of the fact that things are getting worse, I was thrown for a loop.    She was leaving me to fend for myself.  I burst into tears.  I couldn’t believe that we would be ending things when nothing had been resolved.  She was giving up on me.  She was giving up, period.

She said that she didn’t want to stop but she felt that she has done all that she knows how to do.  I expressed my frustration at her decision.  How can we stop now?  What do I do next?  I can’t do this alone!

At this point I was sobbing.  I was scared.  Scared for my future.  Scared for the unknown of what life will look like without support for this problem.  I’m not sure but I think she was tearing up too.  It was not a great moment.

I think one of the things that struck me so deeply was that this is the first time in a full year of treatment that I’ve heard, “we’ve done everything we can do.”  That is a frightening statement to hear when you are dealing with cancer or any serious illness.  It’s scary when the experts decide to give up the fight when I still have fight left in me.  Then it becomes a game of persuasion, pleading for just a little more time.  A little more effort.

Hope is one of the only things we have when fighting cancer.  Without it, it’s hard to get through each day, each treatment, each setback.  And these can come in droves.  I may be pretty freakin’ knocked down lately but I haven’t given up the fight, not by a long shot.  I believe that there is a solution to this problem and we just haven’t figured it out yet.

Yesterday I met with my physical therapist again and she said that she emailed my doctor for guidance on what to do next.  So as of right now, physical therapy isn’t ending for sure.  But it might be.  Either way, I decided to go to another hospital for a second opinion.  I’m not sure that they’ll find anything new or try anything different.  There’s just not a lot of information out there about cording.  But I have to try.  I have to!  I have to be my own advocate.  I have to keep pushing to make sure I have as happy and pain free a life as possible.  Because I plan on living for a very, very long time.  I don’t plan on ever, ever giving up.

32626-dont-give-up-quote-30On

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13 thoughts on “When To Give Up

  1. What does the Radiation Oncologist say about the swelling and cording? I’m going for radiation too.

    • The radiation oncologist said that lymphedema can be a side effect when one has a surgery similar to mine. The last time they saw me I pointed out the swelling. They felt that the swelling was minor and didn’t warrant compression garments. Things have gotten worse. I don’t see them again until next June, though and I don’t think there’s much they can do except to refer me to the doctors and PT I’m seeing now and to document it for statistical purposes. Sigh.

  2. Would laser treatment work that they use for the lymphedema… I wonder if it would help the cording as well??? Just a thought

  3. How very frustrating and scary, I am so sorry you have to deal with this on top of everything else- and that you have to fight for medical support!

  4. Carrie, I am sorry this is taking longer than expected to get resolved. I still have faith it will be fixed.

    I have to admit though, hearing those words from my Onco would hurt me. Like you said, those words are pretty intense. It is my fear to face cancer again, but it scares me way more to hear the words “we’ve done everything we can do” from my Onco because as long as there’s something to be done, there’s hope. Hope is the last thing we lose so even if someone isn’t able to help you, it doesn’t mean there aren’t answers for your situation. I am glad you are seeking a second opinion. I wish you GOOD LUCK with this and I hope the new therapist/doctor finds a solution to your problem.

    • Well, thank goodness my onco supports me. It’s my PT who said that to me. I’m going to call her today to check in to see if we can still try more. We shall see. If she says no, I’ll find more help with someone who feels that they can keep trying.
      Thank you for the support.

      • Oh I was referring to those words as a general statement. They can be discouraging but I have thought about my Onco saying those words to me because it’s my worst nightmare (my mind always goes there).

        I hope you got the support you were expecting from your therapist today. xo

  5. You are so brave. I wish you the best, I can’t imagine being in your situation.

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