February 2011 chemo pals

CHEMO PEOPLE, I am having a return of my shoulder/upper arm pain again.  Perhaps some of you know of this, after surgery and during radiation, many women complained of shoulder blade pain and that sort of thing, partly surgery, partly radiation, mysterious, but not lyphedema (my arms are about the same size, no cording, but I have been massaging lymph fluids down arm towards armpit and over chest etc.).  Well, I thought it had finally gone away, and now it's back again, only it's just in upper arm as an ache and also in top shoulder muscle as a pain. 

FUZZY, no sooner had you mentioned YOUR return of shoulder pain, either here or in the other forum or maybe I dreamed it, than I "came down" with the same pains.  I guess I need to go back and read my own advice to you!  Mine started up Saturday after visiting with family, I was SO exhausted and tired that day, so I thought it was that.  And so I have been massaging and applying heat and EVERYTHING to make it stop.  It's just so dang sore!  I guess it's something that will happen sometimes.  I had a modified radical mastectomy, no recon, so maybe since I have no strength whatsoever over there, I have somehow strained it.

ANOTHER SUBJECT:  HAIR.  Of course.  We chemo girls REALLY had to suffer with this dang thing with the hair routine.  NEVERMIND the cancer, the madness, the pain.  NO INDEED.  It's the hair that's the thing, girls.  We might as well admit it.  But I've always been the long-haired type and I simply do not like being zero-haired type.  SIGH.  What is UP with my hairs???  Ohhhhh, if it weren't for my sense of humor, I would be in a straightjacket by now.  Of course, it doesn't help that I'm lards of pounds overweight at the moment, too.  Kind of gives me that butch look, don't you know, and I might be tough, but not THAT tough.  My hairs look sort of like those poor poodles they haul into the Animal Cops shelters that haven't been groomed for centuries, they have this sad, curly, kinda miserable look, empty eyes, pitiful creatures.  Yes, I have become pitiful. 

Folks, let's come on out and cheer ourselves, because of all the hurt.  Some of us are being tormented all over again on account of this disease, some of us have a sore shoulder and wigged-out hair, some of us have been in car wrecks, lost relatives, wound up in the hospital too many times, lost jobs,and  are in general lost, and some of us are in the Stage IV department desperately trying to find some time... it's all there and so we need good cheer.               

MY PRAYER.......If there were SOMEthing I could do to make this world completely beautiful even with death at the end of it.  I could talk about what I think is beautiful in our world, perhaps?  Well then, these are a few things I find beautiful.  I do so enjoy watching those TV programs about people who survive death and tell us about the afterlife they visit.  And I do dearly love "dancing" with my new doggie, which I hug him around his chest, and he puts his long nose up alongside my neck, and I start turning him and me around in a circle, and off he goes, and then I twirl in the middle and weave around him the other way, and he laughs, I can see that dog laugh.  And so divine is the morning sun across the green, green grass. 

I see the divine.  I feel the divine.  And that is really what I want to share, if I can.  I see it in all natural things, and I see it in people as dark as some get, and I feel all the emotion a person can stand.  But not since I was ten years old have I felt the purity of human spirit as I have in these forums, with my chemo sisters as close to me as my dearest friends in real life and the ones passed away.  The world is a world of struggle, but it is also tipping towards the good, just as Christ said he had overcome the whole world, he meant that HIS WORD, which the word is the beginning and the end, eternal, so he meant his word had overcome the world, which he preached we should love God, which is to so drench ourselves in a loving spirit all the time that we cannot go wrong, which gives us the grace of loving each other, and that means even the worst people of us all, the jailed, the power-deranged, the ones acting out the worst of evils... yes, by the Grace of God we love them all, because everyone deserves to be forgiven.  We're only human.

But one day, one day, I believes we will be like the angels, and comfort and love will surround us, and we will live on in the light of all the stars in the universe at once.  May I have some wings so I can fly to help the people get there?  May I see golden sunrises fall across my lawn every day?  May I always have my girlfriends here to share with?  Do not let the good give one ounce of energy to evil doings, or we'll wind up in a hailstorm.  But I already know how it all turns out, and while the whole 2012 thing is because, as husband said, the Mayan astronomer died and thus their calendar stopped (toooo funny), the change it suggests is actually happening right now, where the good is tipping the earth to the positive forever more.  Noticed how the earth is moving under our feet, how uneven are the world events?  Notice how our country's Democrats are trying so hard to make it right for the "most vulnerable," which so many in political theater have said, and the Republicans are throwing seniors under the bus for billionaires?  This is good versus evil embodied in our politics.  It is hard to imagine a more important election in my country, in my lifetime or anyone's lifetimes, altho FDR was in a similar amazing circumstance.  But this is the year where the good will finally overcome, and we shall then all lead the most amazing lives, from here forward grace will take over, and Barack will finally be able to fully express himself as the visionary person he is, and yes, we will see peace in our lifetimes.

And yet I doubt the truth.  My back hurts so much.  My feet are fractured, I limp, I cannot just walk up the street for a pleasant lookie-see of other people's homes, yards, trees, and flowers, to a quiet rhythm only known by my heart.  And disease, as all other evil, lays in wait for me.  But I can sit on my porch and daydream.  John Mayer said we gotta have "Dreams, dreams to remember," so with whatever you have, go out and MAKE YOUR DREAMS COME TRUE, so you can remember them when you can't make it any further.  The finish line is a forever life on earth, without all the bad stuff, but it will take us, the human beings, focused so hard on the good to make it happen.  So cheer ourselves on, girls, we deserve it, everyone deserves the feel-good stuff born into us...all we gotta do is keep it to the very end and never lose faith. 

Oh, here I go again, making a big speech, and then disappearing for an age, only to reappear again and take up another half-page in this thread.  Just who do I think I am?  SIGH.  But bless you, my dear chemo sisters, each and every one of you has made an impression on me, and I am forever thankful that we have this place we can come to and be REAL, be the BEST, be the beautiful women we all are.  SO WHAT if my arm is sore, so what if my hair looks like a Chia Pet, so what if we are in this cancer fight, so what if bad news just keeps on coming... but don't you know, it's only bad because it stands out from so much good, and it's more colorful because the devil knows his time is short.  But cure for all our ills is just a hearbeat away.  MARK MY WORDS, at the end of this year, it will not be the end of the world; it will be the end of evil.  If you think it, it will be so.  If you believe it, everything you ever wanted will be yours.  If you walk in grace, your path will be lined by rose petals.  And if you love everything, you will see God.  In the Good Shepherd's name I pray these things to the Heavenly Father, Amen. 

In the end, patient readers, I just want to sincerely say I am sister to you all for always, humbled by you, wishing only angels and heavely light for you forever.  I just want to share the love.  And I'd also like to know how do I MAKE MY SHOULDER STOP HURTING???  SMILE.  Gail

Dogeyed, you're the best ! thanks for your beautiful, kind, and caring words.we definately are a sisterhood and I'm thankful for you all.

, i wish too that I could make your shoulder pain disappear. Maybe some more dancing with your amazing dog will loosen it up.

xoxoxo

GG:  I'm telling ya....we're connected!!!  I may have asked you this already ... but have your tried acupuncture?  I haven't but I'm ready to try it ... and it's not as expensive as I thought it would be.  In fact...I'm considering buying needles and sticking myself!! 

Oh - then I could put those needles on my head and make new hairstyles!  HAHAHAHAAA!!!  My FauxHawk is getting a little heavy so I'm stuck on what the next obnoxious thing I will do with it ... I've colored it at least 10 times already.  My mom said it's going to fall out ... HAHAHAHAHAAAA!!!  Well, it grows back! 

This isn't me ... but it's about the same length and cut ... except I colored it super dark today:

I'm I'm thinking about this one ...

Probably won't because her forehead is like half the size of mine!!LOL

GG you are a voice for everyone ... no edits for you my dear!!  You just do your thing!

So glad to hear your arm is BETTER!!!!  That's AWESOME!!!!!! 

Melanie I have always admired your beauty ... you are super stunning and I hope you get your eyebrows back and then some!  LOL  Mine are...tolerable...I still use mascara on them and they still have that funky chemo grey/brown color...but they are thick enough I guess...not the lovely caterpillars that I had before! 

If you get the chance...come on over to the Romp Room...

Oh honey....so sorry ... tonight you could do some masssages that really might help!!  And you'll need to do them every day!  Check out the LE threads and all you have to do is start ... it's a dangerous little beast so make sure you stay on top of it!  And, there is good news...you can actually retrain your body so the other parts of your lymphatic system will take over for the ones that were removed ... at least, that's what I was told and so far, it's worked!

Keep us updated ok?

pejkug3- I've had lymphedema for a year now and mine started the same way. I would get to skilled LE therapist asap! But make sure they actually do therapy on you. I went through 3 before I found one that I liked. I actually haven't had to go to her since August of last year. I've managed so far by myself, but I initially went for 3 months. Learn how to wrap your arm. It is so much more comfortable and works better than a sleeve. Of course, I just wear the wrap to bed usually and the sleeve when I'm exercising, traveling or outside when its too hot. My advice is to get it treated early and try to keep it out of your hand! That is my trouble spot. And I didn't know any better and wore a sleeve without a glove with fingers and it pushed all the swelling into my fingers and hand and I haven't been able to get it out since. But some days it looks great. I absolutly hate it, but I learned alot from the LE thread. 

Doing good here.  Ok Im fibbing abit but its the same ole same ole as all of us do from time to time.  The aches and pains are letting up some, (thank goodness).  But there are still more bad days then good.  But it sure beats the heck out how I felt during chemo.  The only thing that bugs me is when I rough house with the kiddos, (mind you they are 19 and 22) and if they whack me a good one, it really hurts down in the bones. It brought tears to my eyes from the pain it left me.  I thought that was strange.  Never had that before all this now it kinda sucks. 

Im ready for haircut number 2.  I still have lots of curl left and want it gone.  I'm hoping this last cut will do it.  I miss my spikes and Im ready for some hair dye as well.  Funny how it came back even graier then berfore, thats not why Im coloring it.  I just don't like my natural hair color.  Ready for the dark hair again.  May go wild and have some funky put in the mix as well.  I'm feeling abit wild, lol!

Hope everyone else is getting along great.  Thanks girls for being there when I needed it the most and the least.  I will never forget you all!

The place it allllllllll began!!!  Feb 2011 CHEMO PALS!!! 

I keep this as a favorite to watch when someone posts.  I love reading your stories and seeing the updates.  Getting hair cuts and getting through the last fills and exchanges and such.....ahhhhh.  GG:  That's fo' sho' girl!  It isn't easy!

Melanie....you're picture was my inspiration for my Faux Hawk I was sporting for a while.  I actually had it cut and shaved to the style!   LOL 

I am still a little spun with the whole deal...after diagnosis.  Some things have changed that I would have never expected - from super awesome to super crappy.  But I will say, this has been a learning experience like no other - but I connected with my sisters and that is so valuable to me. 

LOVE YOU ALL!

Hi ladies,

I'm happy to see that everyone is still keeping in touch. I've had 2 hair cuts already. The 1st one was more of a trim. Still my hair has some waives but nothing like before. My friends don't get the obsession with the curls, only you girls get it.

My 1 year anniversary is approaching since my last chemo. I've been feeling pretty good and thought that I'm slowly getting back to "normal" but a few days ago my hand started to swell up. It's pretty uncomfortable and the swelling goes down a bit while I sleep as soon as I get up it swells up again. I believe I have lymphedema. I wanted to book my 1st appointment with a physiotherapist by she's on holiday for 3 weeks. Is this an emergency? Should I find someone fast? I really don't know what to do. Has anybody heard or done vascularized lymph node transfers?

As always look forward to hear from my friends. 

Hi SpecialK,

Good to hear from you. It's wonderful that you're excercising and that you're hair is growing in fast.

I'm sorry that you had LE and insurance issues. I hope that gets resolved for you. 

Take care of yourself. 

Braveheart- I would recommend getting in as soon as possible. I know that I'm answering a couple of weeks late though! I have swelling in my hand and its the pits! I didn't have a very good PT at first and she never did therapy on me..just told me how to do it. If she had done it in the beginning, I probably could have had it under better control. I went to PT for 4 months last year and had about 9 month break before the heat of summer came back. Now I've been back in PT for about 3 weeks. REAd the Lymphedema thread for more info! They have lots of it. Or feel free to PM me.