Dis Breast Cancer Survivors Part II -GAGWTA!

[MerryPoppins]

Merry did you have full node removal or sentinel?

Just sentinal. But I think it doesn't help that that arm is um, I guess you'd call it partially disabled. I guess I'll tell you the story of my crippled arm now that I've started.

I had a brachial plexus birth injury...sometimes they call it Erb's Palsy. I was stuck for 15 minutes at birth and they injured my arm and shoulder. They told my parents that my arm would be useless. In fact, one tactless doctor said they might consider putting me in an institution because I'd never be "right". Guess we showed him, right?

Anyway, as I grew, some of the muscles in that arm never developed as they should have because I couldn't use them. My parents took me to specialists and did all sorts of exercises with me. The hope was that I'd be able to lift my arm enough to type, but probably never over my head. I'm very lucky. I actually have a lot of mobility. Much more than they ever dreamed I would have. But the elbow socket has calcium growths that won't let my arm straighten out and certain movements can only be accomplished by using other muscles in creative ways. For example, if I need to comb the back of my hair with my left hand, I have to use another muscle to sort of throw my arm up and back. I can't slowly move it up there as the rest of you can. It just sort of stalls out and I can't make any more progress.

However, since I never had normal use of my left arm, it's not something that I miss. It's just the way my arm is...if that makes sense. Adults don't usually notice it much. Kids are perceptive. When I taught, they often asked me to tell them what was wrong with my arm. They noticed that I used it differently than they did. If you look closely, my left arm, hand and fingers are all significantly smaller than my right. And as I said before it's crooked.

I sometimes think that since it doesn't work in the "normal" way it's more likely to swell. I've noticed in the past 7 years that it sometimes looks red or swells if I use it too much or if I get too much sun. I'm always careful if I go to a football game to sit with that arm next to my husband so we can shade it between us. I'm thinking this winter of making a loose sleeve that I can slide on to that arm when I'm out in the sun for too long. I'm so fair that even with tons of sunscreen it's easy for me to burn. And burning seems to bring a puffy arm along with it.

So, that's probably much more than you wanted to know. But that's my story. Ask questions if you have any. I'm not at all sensitive about it. Like I said, I've lived with this for 47 years. I don't know a time when it wasn't this way. So abnormal is normal for me.

 

[lookingforward]

Just sentinal. But I think it doesn't help that that arm is um, I guess you'd call it partially disabled. I guess I'll tell you the story of my crippled arm now that I've started.

I had a brachial plexus birth injury...sometimes they call it Erb's Palsy. I was stuck for 15 minutes at birth and they injured my arm and shoulder. They told my parents that my arm would be useless. In fact, one tactless doctor said they might consider putting me in an institution because I'd never be "right". Guess we showed him, right?

Anyway, as I grew, some of the muscles in that arm never developed as they should have because I couldn't use them. My parents took me to specialists and did all sorts of exercises with me. The hope was that I'd be able to lift my arm enough to type, but probably never over my head. I'm very lucky. I actually have a lot of mobility. Much more than they ever dreamed I would have. But the elbow socket has calcium growths that won't let my arm straighten out and certain movements can only be accomplished by using other muscles in creative ways. For example, if I need to comb the back of my hair with my left hand, I have to use another muscle to sort of throw my arm up and back. I can't slowly move it up there as the rest of you can. It just sort of stalls out and I can't make any more progress.

However, since I never had normal use of my left arm, it's not something that I miss. It's just the way my arm is...if that makes sense. Adults don't usually notice it much. Kids are perceptive. When I taught, they often asked me to tell them what was wrong with my arm. They noticed that I used it differently than they did. If you look closely, my left arm, hand and fingers are all significantly smaller than my right. And as I said before it's crooked.

I sometimes think that since it doesn't work in the "normal" way it's more likely to swell. I've noticed in the past 7 years that it sometimes looks red or swells if I use it too much or if I get too much sun. I'm always careful if I go to a football game to sit with that arm next to my husband so we can shade it between us. I'm thinking this winter of making a loose sleeve that I can slide on to that arm when I'm out in the sun for too long. I'm so fair that even with tons of sunscreen it's easy for me to burn. And burning seems to bring a puffy arm along with it.

So, that's probably much more than you wanted to know. But that's my story. Ask questions if you have any. I'm not at all sensitive about it. Like I said, I've lived with this for 47 years. I don't know a time when it wasn't this way. So abnormal is normal for me.

I get swelling too. My breast cancer arm is doing fine but its the arm that had the blood clot from the port that gives me trouble. I also had a sentinal node biopsy only on that side and sometimes my arm swells a bit (not much) so I wear my sleeve for a few hours.

Merry, I love how he human spirit/mind find ways around our physical challenges in such creative ways!

My "new" left breast has some redness to it and my plastic surgeon is going to admit me to the hospital if it is worse this morning for IV antibiotics. It looks a bit less red to me so I am hopeful that I can avoid that. It hurts though. I am a little worried. I just went back to work so I am not happy about the possibility! If it is less red than thats a great sign right???

 

[lookingforward]

Well, I am headed to the hospital for four to six days. *#**!

I had a 101 fever and redness so in I go. Talk to you all soon.

 

[jackskellingtonsgirl]

Merry - Thanks for sharing your story!

Maureen - I am sorry you have to go in for IV antibiotics! I hope the infection responds quickly! You will be in my thoughts!

Laurie - I hope your mom isn't too sore today!

Mom's Dr. never called me back yesterday, so apparently I am going to have to harass them. Everything is always so complicated. WHY can they not just return my call so we can discuss the lymphedema and be done with it?

 

[lookingforward]

Merry - Thanks for sharing your story!

Maureen - I am sorry you have to go in for IV antibiotics! I hope the infection responds quickly! You will be in my thoughts!

Laurie - I hope your mom isn't too sore today!

Mom's Dr. never called me back yesterday, so apparently I am going to have to harass them. Everything is always so complicated. WHY can they not just return my call so we can discuss the lymphedema and be done with it?

Believe it or not, the hospital has no beds and I have to wait for a phone call that one opened up. Nice! Anyhow, I wanted to say that I saw a lymphodema specialist right after my initial mastectomy and she measured me and gave me prevention techniques, etc. It was a great wealth of information. Perhaps you and your mom can see one together (they teach prevention massage) and get the full picture.

I am headed to the bookstore to buy reading materials so I won't be bored out of my mind in the hospital.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Maureen- I'm sorry you are having trouble and you have to be admitted, that stinks! I hope the antibiotics begin working quickly and you are outta there soon! Please update as you are able. Will you have internet accesss? You are in my thoughts and prayers.

Elizabeth- It can take a while before you hear back from the onc. or nurse. Don't be afraid to call back (I'm not thinking that's an issue for you! )

Melissa- I think you hit the nail on the head when you said that's just the way your arm is and that's normal for you. I think if more people had your attitude they'd be a lot happier with whatever situation they are given.

Laurie- How was your mom's surgery?

disneyholic family- I'm so glad you know about F.O.R.C.E. It's founder is a friend of mine and the site is a wonderful resource. I'm sure the conference was outstanding. I think it's terrific that you are so supportive and you are getting so much back yourself!

I saw the Endocrinologist yesterday. Well, first I had a long history discussion with her Fellow, and some of his comments were getting on my nerves. Stuff like, "why do you think you got UC/BC..." What's the point of that?!? Telling me weird things that are wrong with me, yeah, I know I'm weird. He said I have osteoporosis not osteopenia, apparently my last vertebrae is bad. But the Endo. said osteopenia. I really liked the Endo. She does not think my parathyroid is causing the high blood calcium because the labs say my parathyroid function is normal. She said it could be lots of other reasons so she did 7 more blood tests and a urine. The results will take at least a week. Of course last night I was watching "House" and the patient had high calcium because she had lymphoma.


So what's everyone making for Thanksgiving? I'm bringing mashed potatoes and apple pie and helping mom make everything else at her house. Mom and Dad always host, it's easier for them.

 

[disneyholic family]

GAGWTA!!

thanks for the warm welcome everyone!!

yes the conference was great and i highly recommend it..

for anyone who is contemplating reconstructive surgery, they have a 'show and tell' session (for women only) where you can actually see women up close who have had various kinds of reconstructive surgery or no reconstruction at all...(you can even touch if you're so inclined)...
it's very interesting and very helpful if you're in the decision making process......

since this year's conference is at WDW, it makes it even nicer..

my mom, sister and i are scheduled to go again and we're planning on staying on a few extra days at WDW after the conference..
we're also planning on going on the podcast cruise just before the conference...
the podcast cruise is from May 10 to 14th..
and the conference is on the 15th/16th (with the show and tell session the evening before the conference on the 14th)..
so it works out perfectly....the cruise, to the conference, then a few days at WDW..
my mom and sister aren't big disney people, but i've slowly been converting them over the years.. ..

but before then, my sister is going to have to go through a whole additional round of chemo and radiation and maybe surgery.....
unfortunately, the various doctors she's consulted all disagree on her treatment...
and now that her lung cancer has come back, she can't be part of the ovarian cancer clinical trial (the pharmaceutical companies won't let her participate)..
so right now she has to choose between the different treatments suggested by the different docs.....not easy...

as for testing for the mutation - her sons (30 and 27 years old) refuse to be tested...i can understand their points of view...

 

[jackskellingtonsgirl]

Believe it or not, the hospital has no beds and I have to wait for a phone call that one opened up. Nice! Anyhow, I wanted to say that I saw a lymphodema specialist right after my initial mastectomy and she measured me and gave me prevention techniques, etc. It was a great wealth of information. Perhaps you and your mom can see one together (they teach prevention massage) and get the full picture.

I am headed to the bookstore to buy reading materials so I won't be bored out of my mind in the hospital.

Ugh! It was bad enough that they wanted you to be admitted, now they want you to wait around for a bed! I hope they can get you in soon so you can get started on the IV!

Mom's insurance will not cover a visit in Dallas, and I do not currently have any trips scheduled to go to Kansas.

The nurse actually called me right after I posted that they hadn't called. She said there is a note in Mom's chart that they DID talk with her about ways to reduce the swelling. I told her Mom is not utilizing any of the techniques they discussed, and I am worried about her sitting in the car for 9 hours, lifting and carrying toddlers, then sitting in the car 9 more hours to go home. Since they aren't going home until Sunday of course she will turn around and go right back to work on Monday. Mom doesn't like to acknowledge that anything is ever serious, so SOMEBODY needs to tell her THIS IS NOT something to be ignored.

Laura - How frustrating to deal with the Fellow at the Endo's office! I hope the tests come back with a reason for the high blood calcium. A reason that is easy to treat!

I have NO CLUE what we are doing for Thanksgiving. DH is the cook in our house, and we don't have his schedule for next week yet. If he has to work we will just have something really simple for dinner. If he is off he will probably make turkey and sweet potatoes.

 

[MerryPoppins]

Maureen, I hope you respond quickly to the meds and are back home again soon. Too bad you have to wait for a bed, but at least it gives you time to get some reading material.

The conference sounds great for those trying to decide about reconstruction. Were you allowed time to ask the women questions? That's pretty cool. I wish I'd had time to talk to women before my surgery. I think I might have decided then not to begin reconstruction, rather than starting and then reversing it. Looking back my mother pressured me to have reconstruction because the mastectomy made her uncomfortable. I thought I wanted it too, but now I know I really didn't.

Sometimes I think doctors and nurses get overloaded and don't call back as quickly as we would like. I'd just go ahead and call again to be sure I didn't slip through the cracks.

Thanks for the compliment. I guess I've probably had a lot of time to come to terms with what I've been given. As a young kid I really hated my arm because it made me different. I prayed that God would somehow heal it and make me like everyone else. As I grew older, I saw that in a way it was a real gift. There's not much I really want to do that I'm not able to do. And it has allowed me to grow up knowing that different is just that...different. Not bad, not something to be ashamed of, just different.

It also taught me to laugh and hopefully I've helped others to laugh. Not in a putting myself down kind of way, but just honest laughter about the where I am. I can't shoot baskets or play volleyball worth a hoot. The ball pulls to one side because my arm is crooked. But I found a group of good friends who formed an intermural volleyball team and invited me to play with them. They wanted me even knowing about my arm. We were horrible. We laughed a lot at ourselves and with each other.

I guess living my life this way helped me when I had breast cancer. I handled the beast the same way I've handled other obstacles in my life. I found things to laugh about. And I'm still laughing. Maybe some would say it's not funny, but I always would rather see the humor than sit around and cry. (Not that crying is bad. I did my share of that too.) Mostly I prefer to find the humor. After all, I could have died that day that I was born. So maybe I laugh because I'm still alive.

Anyway, I do notice the slight swelling and redness that I didn't have before my surgery. But I baby it a little and it seems to go away. It's honestly never been bad enough that I spoke to a doctor about it. A couple of days of babying it and it goes back to normal. I wonder if massage would help?

 

[Pea-n-Me]

Full beds just mean that people are sick and they're not being pushed out the door before they're ready. That's a good thing. Maureen will hopefully benefit from the same thing in a few days when someone else is waiting for that bed. Good luck, Maureen.

Merry, great story, thanks for sharing.

Hope all the mothers are doing well.

jsg, the swelling may come and go, but right now the lymph fluid needs to learn a new lymph "channel" to flow back through again, after the old channels were severed with surgery. These will be further obliterated with radiation, unfortunately. So it behooves your mother to "teach" the fluid now where to go. This takes a combination of physical therapy, self care, and often a sleeve, at least at the beginning. These are steps your Mom needs to take on her own, you can't do it for her. I know it's frustrating. Good news is that I had mild swelling at the beginning (after a flight, and salty food, darn dining plan!) but I went to PT just for one period, wear a sleeve when I fly, and am careful about salt. Thankfully it's pretty rare now to have swelling. But the big thing was that the fluid learned a new channel during that time, apprarently. (That's how they explained it to me.)

Laurie, your Mom sounds like she's doing great.

Laura, I've seen some brilliant fellows find things that others didn't. There's a method to his madness, absolutely, and you never know, he may end up being the one to find an answer for you. Hang in. Your trip sounded fabulous.

We finally met with the builder this week, so hopefully we'll be a go in the next month or two. I'm getting a little nervous, but excited too. I'm trying to get my Christmas shopping done and out of the way so I can enjoy the season.

GAGWTA

 

[lookingforward]

They finally called and have a bed on the cardiac floor. Can you BELIEVE THIS!???? They said its the only bed available but "don't worry...we won't have you on a monitor"." Yea, thanks. Its going to remind me of my mom and make me very depressed. I am near tears. Gotta go.

 

[Pea-n-Me]

Yes. It's not ideal. The flip side is that a cardiac patient will probably be going somewhere he shouldn't be, too. The good news is that you will probably get care that is somewhat more skilled (and quicker to act in an emergency) than on a medical floor. Unfortunately, when beds are that tight, it sometimes happens. Hopefully things will work out well for you.

 

[laurabelle]

Maureen- I'm glad they got a room for you. I was thinking of your mom too. I hope you're feeling comforted and well cared for there...

Linda- I know, it was more my mood ...not to mention the steroids. Actually, more than once a fellow caught something one of the other dr.s or nurses missed. I am grateful to be in a teaching hospital getting lots of attention...mostly I'm just sick of being a patient!
I'm excited that you are getting started on your home project soon! Can't wait to see pictures of your progress.

 

[Pea-n-Me]

I'm just sick of being a patient!

I know. I don't blame you.

I just like to point out the other side of the "bad" things when it comes to medical care.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

They finally called and have a bed on the cardiac floor. Can you BELIEVE THIS!???? They said its the only bed available but "don't worry...we won't have you on a monitor"." Yea, thanks. Its going to remind me of my mom and make me very depressed. I am near tears. Gotta go.

Maureen, I hope you are out of the hospital soon!

Linda, that makes sense about the fluid needing to "learn" a new channel to drain from. I read that radiation will make it worse. I just think Mom's tendency to ignore things will not serve her well in this situation. Hopefully her oncologist will be able to impress upon her that this is NOT something that she can be reckless about. Mom likes to defy me and do the opposite of what I say so I am sure this will be an uphill battle.

 

[Pea-n-Me]

Mom likes to defy me and do the opposite of what I say so I am sure this will be an uphill battle.

Have you thought about just letting her have it her way? This might be a "pick your battles" situation. I completely get what you mean - I grew up in a dysfunctional family, too, and I could probably write a book. I know it feels like you get stuck with the consequences when things don't go right, and the child-like behavior is really . But I kind of think that if you step back a bit, your Mom might be more receptive, maybe even seek out your input and advice. And it would save your sanity too. She'll plug her way through this somehow. You know your family best, but it's just a thought on my part hearing your continued frustration. You're a good daughter. Hang in there.

 

[jackskellingtonsgirl]

Have you thought about just letting her have it her way? This might be a "pick your battles" situation. I completely get what you mean - I grew up in a dysfunctional family, too, and I could probably write a book. I know it feels like you get stuck with the consequences when things don't go right, and the child-like behavior is really . But I kind of think that if you step back a bit, your Mom might be more receptive, maybe even seek out your input and advice. And it would save your sanity too. She'll plug her way through this somehow. You know your family best, but it's just a thought on my part hearing your continued frustration. You're a good daughter. Hang in there.

If Mom wasn't the sole caregiver for my 16 year old sister I would be much more inclined to let her make her own choices. Part of it is my own selfishness. If Mom is hospitalized, I have to go up there. If something happens to Mom, I have to take my sister.

I told her I think driving down here is a bad idea, she said she is doing it anyway, I let it go. I kept telling her to get the flu shot, mostly because she insists on driving down here to take care of my sister's kids. She did get the shot, so that takes care of that. Now the swelling.

Believe it or not, I have tried to step back a little bit. I am just not very good at it.

 

[NHAnn]

I just like to point out the other side of the "bad" things when it comes to medical care.

You are an amazing resource and friend here Linda. It's great to have both your technical knowledge and compassionate perpective.

Thinking of Maureen and sending healing thoughts

jsg--I hope you can find ways to step back, even minute by minute, to ease your own frustration levels with the family dynamic. It'll take a toll on you (the stress/frustration),on your own physical and mental health and your own immediate family over time. This stood out to me:

If Mom wasn't the sole caregiver for my 16 year old sister I would be much more inclined to let her make her own choices. Part of it is my own selfishness. If Mom is hospitalized, I have to go up there. If something happens to Mom, I have to take my sister.

I too come from a dysfunctional family of seven siblings, and I do sympathize in knowing that it is very hard to break out of that mode of thinking. But you really don't "have to" do those things, just as your mother has choices, you do too.... I thought maybe what Linda was getting at was sometimes it's better to choose to let things go in order to to start chipping away at or at least shifting, the old ingrained interpersonal behaviors and issues. You say you're not good at it...heck of course it's hard, I don't think anyone finds it easy to change years and years of patterns/interactions. I also know from personal experience it's VERY hard to deal with all that and a major illness from a distance. Baby steps are good! Hang in there!!

MerryP...you are a gem!!

Laura...I'mglad you had a nice getaway with your DH

As for T-day...we go to DSS and DIL (and Avery and his sisters). I bring an appetizer/munchie, corn,potatoes, a pie, and some wine. Haven't decided on the app but the pie willbe a chocolate pumpkin cheesecake

GAGWTA

 

[MerryPoppins]

Thinking of Maureen. Hope she's relaxing and letting them take good care of her while she reads a good book. Maybe if we think happy thoughts we can transfer them to her?

NHAnn, you're a gem too.

I come from a mostly functional family. We all have our dysfunctional moments, though. My mom has been more dysfuctional since my dad died than the rest of the family ever dreamed of. She's like dealing with a teenager that makes terrible choices in boyfriends. (In the past few years she has dated an alcoholic, a guy who was bi-polar, and another who just has anger management problems. ) There have been times that if she'd been my daughter, I'd have locked the door and thrown away the key! Other than that, I'm afraid I'm not a lot of help. But I do sense a high stress level in your messages. I know it's hard to relax when you feel the weight of the world on your shoulders and I can tell that you feel that you'll have to pick up the pieces. Been there. But sometimes you do have to just let them make their mistakes. Don't I sound like I'm HER mother? As I always say to my husband when we're dealing with the kids, I have to chose the ditch I want to die in. Sometimes it's just not worth the trouble. Have you even sat down and talked about your concerns? Telling her that you only want what's best for her and why might make a difference? Maybe she just thinks you're bossy? That's what my mom says to me.

Thanksgiving Day will be at MIL and FIL's house. My mom is invited, too. I'm not sure what I'm supposed to bring along yet. I need to ask.

Then my mom usually has "Thanksgiving" at her house on Friday. My brother and his family aren't coming this year. They're spending Thursday with her extended family and having her parents to their house on Friday. We're invited, but it's two hours away and we can't bring along the dogs. Staying any length would be too long for them to be locked up. Mom has opted to stay home, so we're doing something special that weekend with my mom. Looks like it might be going to a play and out to dinner.

 

[MerryPoppins]

I forgot. I read a beautiful quote that I wanted to share. I'm all about beautiful quotes. They inspire me.

"What you leave behind is NOT what is engraved on stone monuments
but what is woven into the lives of others."

May I continue to add fibers to the tapestries of those around me. And not dull, drab colors, but bright ones. I want to leave a cheerful streak in all the lives around me. Isn't that a nice thought?