A post from a woman on the general board. Seeking advice

[richinma2005]

BP injury caused by radiation for breast cancer
Posted: Jun 28, 2006 3:23 PM Reply


I hope I am in the right place this time. I am not very savvy with the language of the internet, so if this goes to the wrong place, please, somebody, contact me and tell me how to get where I belong.

I had radiation treatment for breast cancer in 1978, in Boston. It was truly cutting edge treatment at the time, and I traveled from Chicago for one of the first lumpectomies and the subsequent radiation. For 20 years, all seemed well. Then, so slowly, and so subtley that it was hard to tell when it began, I noticed some weakness in my hand. My right hand, of course, the side that received the radiation. My signature was becoming sloppy, I was having trouble with zippers, I started dropping things, and there was a slight tingling and some numbness.

Since I went back to Boston every year for my check-ups and mammograms, I reported this to my long time doctor, who was quite sure it had nothing to do with my old radiation.

To cut this long tale short, let me just say that it has taken me this long, and many doctors and many tests to find out that the nerves in my brachial plexus are matted together as a direct result of radiation damage, will probably continue to worsen, and that there is no known cure. Almost all the doctors I have seen call it "unfortunate," and "very rare," but no one holds out much hope.

By now, I cannot touch my hand to my face or my head. I can't get a fork to my mouth, brush my teeth, brush my hair, put on make-up or put on earrings with my right hand. I can still print, slowly and big, like a 6 year old, but my husband has to sign checks. Dressing is an agonizing process, and I wear a splint on my LEFT hand because it is always in pain from overuse. I can no longer garden, something I loved, or prepare meals unless someone else is around to help lift, cut, pour or do the hundreds of small things we all take for granted every day.

The most terrible thing, of course, is go through all this alone, feeling that there is nobody out there who can really understand how you feel. There is some anger, naturally, but there is great fear of the future, of how you will cope when this gets worse, and will it get worse? Is there going to be pain, is the arm going to turn into a piece of wood? And the depression. There is always the depression that sneaks up when you are trying to tie a shoelace, write a message, turn a key or open a door. I wonder how other people cope, and I wonder all the time if I'll ever be able to talk to anyone else.

I have been trying to reach people on the internet for a long time, but I have found it very difficult. I was sure I could get my back yard rezoned for a gas station more easily than I could get myself on a BP messageboard and actually elicit a response from the outside world.

I don't feel I have to communicate only with people who have had this injury happen in this fashion; I would love to hear from ANYONE who has lost the use of an arm and a hand. I just hope that I have understood the instructions well enough so that this message doesn't wind up in space, on its way to Mars. Please let me hear from someone soon. Thank you so much.

Barbara-

[Dan]

Hi Barbara,

I just came across this web site today and thought it was great to see people are communicating about their issues living with one arm. I guess I just wanted to get a reply to you soon so you knew your message didn't end in space. I am one of those who lost the use of my arm in an accident, so it was not drawn out like yours, that was 20 years ago when I was 18. I also was fortunate to not injure my dominate arm. But I did want to give some encouragement. In my case, I thought myself fortunate to be alive, so I approached my loss looking at all the things I could do, one being able to wake up each day, which has helped me tremendously. I know each person deals with this differently and you will have your own unique struggles, but I would encourage you to find the things you can do and be proud of the success and then work as hard as possible to overcome the issues you struggle with. I also give myself a little extra time to do things and have learned to be patient with myself, especially when tying my shoelaces.

Hopefully someone who has lost the use of their dominant arm and deals with the overuse pain you are dealing with can comment and give you some more specific advice than what I provided.

Hope there is something in my response that is helpful,
Dan

[Susie Kaye]

Hi Barbara,

Welcome to our club no one wants to join! This place is a Godsend. I think one of the 1st things you should do is check out the medical resources section of these message boards. Find a Dr that specializes in brachial plexus injuries and see if there is anything they can do for you. These guys can do things that most other Drs can't or won't. They are doing things now that they weren't doing six years ago when I had my accident.

My right arm was totally paralyzied along with my diaphragm in my car accident. Mine was so bad there wasn't anything that would work. So after waiting 3 years of hoping for any kind of spontaineous recovery, I had my right arm amputated. I am blessed in that I am left-hand dominant.

If you have any questions about anything, feel free to e-mail me anytime! My address is: srogers@cox.net

Susie Kaye

[admin]

Hello,Dan,

This is a late reply to your encouraging message to me.
I am so sorry you lost your arm at such a young age; I am
sure it was devastating blow. But I admire the upbeat tone of your message, and you definitely made me feel better. If you could deal so successfully with your loss so young, then this grandma will certainly take heart and try some more.

You are right when you say one has to take more time to do
things now, and I am learning a few tricks from my physical therapist as well as from a great book called
One-Handed in a Two-Handed World. I am sure you must have heard of it, and if not, you might actually find one or two things that you haven't figured out in 20 years.

I think it is a good idea for me to try to find people who lost their dominant hand and find out how they manage
the other hand without hurting it. I am still in the frustrating stage of convincing my right hand not to pick up that hot cup of coffee while convincing my left hand that it can and must pick it up!

Thank you again for your kind and helpful message,
Barbara

[admin]

Hi Susie,

Your first sentence made me laugh. How right you are!
Everything is easier to deal with if you can find something to laugh at.

I am so sorry you had to lose your arm in an accident. I
can't even imagine such trauma. The bright spot here is that you still have your dominant arm. I can still use my right arm and hand to balance some things, but it can't hold anything. My lazy left hand, however, resents doing everything, and has responded by becoming inflamed, and now has to rest itself in a brace all the time.

I did see Dr. Belzberg last year, and he was the one who told me it was rare but pretty hopeless. Radiation as treatment for cancer is supposed to heal the body, not take away from it. The irony of it still bothers me sometimes.

I am learning, though, and I don't feel so alone anymore, even if no one else seems to have come to this situation the same way I did. Losing an arm, or the use of an arm, is still the same for all of us, regardless of cause.

So, is there any chance that you know how to pick up a baby, or is that out of the question?

Thanks for taking the time to reply to me, and thanks for making me laugh,

Barbara

[Kath]

Barbara
I know I am late in replying but I want you to know you are no longer alone.
If it's humor you are looking for, you will find it among bpi injured adults...
I am birth injured (robpi). I have some use of my arm and hand but no strength and very limited use.
I had three children and 5 grandchildren.
Now that I am older I find it hard to handel the squirming 2 year old but I do it.
There are many ways to compensate to even feed a baby when one arm has no use or extremely limited function.
I was amazed how automatic that compensation came back when my first grandchild was born 12 years ago.

I am really sorry that they don't hold out any hope for recovery.
I must remind you to take care of the unaffected arm.
It is important that you do what is necessary with it but don't be a hero.
You don't have to prove anything to anyone by trying to do all the things you did before you were injured.

I am so glad that you have found a place to talk to others and share your journey.
It is so much easier when you have others who understand.

Kath (robpi/adult)
UBPN BOD Member

[admin]

Hi Barbara,

Glad to hear you got something out of my post. Looks like you are making progress and getting around the message boards.

It is interesting reading how others have dealt with and are dealing with this injury. I guess I never gave it much thought until I came across this site by accident, I was just trying to spell brachial plexis correctly.(Still not sure if I got it right).

Someone asked me to write a bio for a speech I was giving and I needed to give a quick description of my injury. I give talks to high school kids on overcoming life's challenges and use the example of my arm as a way to get them to pay attention, why else would they listen to a 30 something guy? I really don't dwell on it during my talk because what I am really trying to do is get them to focus on what they think is a problem in their life and then walk them through some ways to deal with whatever it is they are struggling with.

Other than a few acquaintances over the years I have met and know with this injury, I haven't read or heard how others are doing. That is why for me, when you commented that it must have been a devastating blow, I guess I don't know how to respond other that for me it really wasn't. I really only saw the fact that my goals, which had previously been about sports, changed overnight to things not competitively sports based, not much else was different. I don't know how to explain it other than all I saw in the mirror when I looked at it was the same guy I had always seen. I didn't see myself as disabled or less than before, I just saw that the challenges I had in my life were different than before. We all have challenges, just depends on what they are.

This is something I really focus on in my talk and really get them to focus on, for me, all I saw was that I had two choices to make. 1) Was I going to let the loss of my arm make me miserable and depressed, or 2) Was I going to choose to live life to the fullest and enjoy what I could get out and give back to it. I made the decision for #2.

Wow, looks like I am writing a book, sorry for the long winded(typed) reply, I hope this is encouraging to you and helps you continue on the road to dealing with this in a positive way.

I thought I also would comment on the baby question, I have a 14 mos old and another one on the way, and as far as picking her up, I have not had much difficulty with it. The main thing I focus on is the balance point I place my hand on her body, as long as I do that, it is fairly easy, haven't dropped her yet:)

Again, not sure if I am giving much in the way of specific help, just thought I would share some of how I dealt with it mentally.

By the way, how many grandchildren do yo have?

All the best,
Dan

[admin]

Dan, what an awesome way of looking at your life! I guess in a way I also said that same message to my daughter. She had a terrible motorcycle accident at age 20. She was all about sports also especially water polo and swimming (All American). She didn't see herself doing anything else and layed in bed quite a bit. I told her she could lay in bed for the next 60 years and feel sorry for herself or she could get up and live life with all the people who loved her dearly. Thank God she has seen the good in life and is moving on with her life. She still worries about if she will ever get a boyfriend and get married and have children, but just recently she said to me, "at least I know he will love me for who I am!" How true! It's been over 9 months now since her accident and she's doing better than what I thought. I hope it continues! Thanks for the encouragement. Sue

[admin]

Dan,

I was just astounded by your last message. What an unusual young man you must have been (and still are, as I can see)to have handled your injury in such an incredibly mature and positive fashion! I have no doubt that most teenagers, who are all indestructible, of course, would not have had your amazing outlook. Listen, most OLD people would not have your amazing outlook!

I am sure your parents take great pride in you, as they should. You are a role model for all of us.

I think it is wonderful that you visit schools and give talks to teens the way you do; I am sure you make a strong impression on them, and you never know how many lives you influenced and will continue to influence, as the memory of your words may come back to them at some future time.

I am delighted to hear that you have a toddler and a new baby coming; congratulations in advance! I have a new baby coming too....via my daughter, though. I have 4 grandchildren at the moment; my big boys are 9 and 6, my little guy is 4, and the only little girl is almost a year, and walking already! Number 5 is due just around her birthday in 4 or 5 weeks. It would be nice to have another little girl, but we will happily settle for one more little guy, hopefully in A-1 condition.

Could you be a little more specific, though, about how you picked up your little girl when she was an infant as well as how you lift her now? I have to sit on the floor with the toddler, and I can get her in my lap, but there is no way I can get up with her. Those are leg muscles, my friend, and those gave out on me long ago. Any suggestions you can make will be much appreciated.

I enjoy your messages very much, but please don't worry about length...I am the queen of verbosity!

Barbara-

[jennyb]

Hi Barbara, sorry it took me so long to reply :0)
I am amazed that the nerve damage took so long to show up, that's terrible. Have you seen an actual tbpi specialist-I know Dr Kline from Louisiana has written papers about radiation tbpi but I'm not sure whether his clinic is up and running after last years hurricane. I am wondering if they can do any kind of nerve grafting or transfer to help you????
I got my tbpi like many others, in an accident, so it was like one minute I was 'normal' (hahahaaaaaa) then next minute, I had no use of my right arm. That was obviously a big shock, especially as I had 6 breaks in the arm so assumed that was why it wasn't working-I found out after a week or so my paralysis was permanent- but in some ways it gives you a low point from which to strive upwards. I was very upset at the beginning and assumed I'd never do normal things like have a job, kids, marriage, drive etc etc, especially as in my case it was my dominant arm that got damaged. But as everyone else says-you just do it.
By 2 years post injury I honestly hardly thought about it, except when it hurt, which I'm afraid it still does. I had very little overuse pain from the left hand at the beginning and in fact have only started having that in the last few years. This has coincided with menopause, so I think that has a lot to do with it. If the good arm hurts, I stop using it. Works for me, and I'm still able to pick up my 7 year old daughter with my left arm, and I can dig a fair trench for my runner beans, too :0)

Your arm getting worse would be an awful thing, as I said, losing all movement and feeling in your dominant arm in a split second is one thing, but to gradually lose it, bit by bit, I would hate it and I feel for you. I wish I could help more with suggestions for gadgets and adaptions but the truth is, other than left handed scissors, I don't have a single one. I just do everything with one hand and it seems normal to me.
Please keep us posted about your progress, I know that radiation damage is known as a cause of bpi and there used to be a highly vociferous group of women in the UK trying to get some answers about this kind of damage but I can't find their website now. I'll keep looking.

Take care Barbara and everyone else, we all have different injuries and different issues, but at least here is a place people who know how hard it is can sympathise.
Jen NZ