February 2011 chemo pals

SpecialK...you are always so well informed and know what you are talking about! I'm not sure I'm answering your questions correctly, but I think tamoxifin (sp?) would be adjuvent right? I will be starting rads in a cpl weeks (meet the rads Dr. on Friday) then I will be on tamoxifin...my onc. says normally they do that for five years but he thinks I will always be on it. I wasn't given any stage or anything yet, just some educated guesses b/c I didn't have the surgery until after the chemo...I guess one reason I am worried is b/c with it being in the lymph nodes on both sides that's already an indication of a higher stage...now I have to worry about it mestacisizing (sp again?) into the bones...i could be in there still and they just don't know!! It's so maddening! Why can't there just be a test and they can say ok...it's gone!

Dear ALL SUFFRAGETTES,

I lost my far-away glasses that I use to type on computer, they're in the yard somewhere becuz I just watered the rhododendrons I had put in along the roadway in the spring.  I cannot believe I actually had the strength to do that.  I think one rhodo might not make it, was just so dried out.  But there are eight, so while I hate it that it didn't get enough water, we did our best.  When I was on the last of Taxol, I absolutely could not do anything, so I think they didn't get watered enough.  I guess I just assumed husband would do it, which he did a couple days ago and told me about the sick rhodo, so I wanted to see for myself about the one he said on the end that looked bad.

But yesterday, you see, they FINALLY took out my surgery drains.  I cannot tell you how overcome I was with relief when the nurse clipped the stitches and pulled them out.  They put antiseptic and bandage on where the drain tubes came out near under my arm, and it feels SO much better, those things have been pulling and hurting ever since I tore everything up moving from a gurney to a bed when I should have been moved by the nurses instead, and when I used my right arm to support my weight so as to protect the sore and gashed-up left side, I fell into the bed and wrenched those drains and the surgical site, lots of blood and they said it was fine, until I finally convinced my room nurse to get someone in there to have a look at it, so when the RN pulled off the elastic wrap and saw how screwed up the bandaging was, she pulled it all off there, and what I could see was just a red disaster area.  Supposedly within two or three days, they'll scab over and that little post-op episode will be over, and I can take off the bandage.  Before they took out the drains, I had to bandage them every day, they were in a place hard to reach so it always took maybe an hour, and husband cannot do it becuz he faints at the sight of wierd human body problems, but they just kept bleeding and seeping for maybe four days straight, and then it improved.

My labs, the nurse went over them, the chemo had shrunk up the three growths, one of them was 5cm, down to zero.  Unreal.  But also apparent was the cancer was still alive and well in the ducts themselves, AND they found the mole on my breast that I had insisted the doc take out, well, it had become a melanoma, whiich I already knew it had to be because it look so different when my boob first started to look strange.  Most of my immediate family have had melanomas.  Anyhow, the doc is going to consult with an expert to make sure he left enough margins for the mole when he did the surgery.  Good grief, I sure hope they don't have to go back in, I'll be talking to doc as post-op meeting at end of next week, hopefully he'll tell me I'm good to go for radiation.  The nurse said the doc wouldn't change the protocol for six weeks of it every weekday, but the radiation specialist might.

My digestion was totally screwed up all last week, the surgery was last Tuesday, and finally today and yesterday I had some "action."  That was the worst I've ever been constipated, and I've had some tough rounds after antibiotics.  I really need husband to pick up Acidophilus milk when he goes to grocery store, it helps digestion whether you've had antibiotics or not, which I don't know if they had that running thru me whilst doing the surgery or not.  They gave me Vicodin instead of my Percoset to take home, and I think that is responsible, along with whatever the anesthesia stuff was. 

 When I came home after they took the drains out, all my emotions just spilled over and I cried and cried, and then I cried over the loss of my dear dog Gandalf, it's like I was in so much discomfort from the surgery and the fall I took whilst getting into my hospital room bed, that I held everything in.  I have thought of him almost all day today, which yesterday they took out the drains.  He was the most beautiful dog you can imagine.  I've tried so hard to put pics in here, even got advice from a part of this forum that discussed that, and I still cannot get a pic in, but he was such a beautiful dog, and THAT'S what made his passing so hard, aside from him being ours for 14 years.  He was a husky mix, and he had the most beautiful coat, it was golden, lots of black streaks everywhere, and white chest and feet with a white blaze on his nose, and when he was a pup, he also had the husky black mask around his eyes.  And then there was the one blue eye, really striking dog, and very large, maybe 80 pounds or something, I remember a workman one time got a little concerned, he goes, "That thing looks wild!"  He did have a wolf look.  When we walked together, my fingertips touched his back.  He was such a gentleman, too, when we brought home Beauregard the German Shepherd Dog I helped rescue when I worked with the shelter Animal Control people, they were going to put him down because he was old and sick so I took him home, and Gandalf was not too pleased, but he put up with that alpha dog and even tried to get him to play and romp with him.  But Beau was totally aloof with our dogs, yet he absolutely worshiped up.  GSDs are the best kinda dog.  So, when Beai went, it was his attachment to us that tore us to pieces.  When I say alpha dog, I remember one time I looked at Beau's bed in the living room, and ALL the dog toys were on his bed!  Smile.

GIRLS, AM I RIGHT that radiation is supposed to kill whatever cancer cells are left in the breast following surgery?  They took out 11 lymph nodes, only two had cancer, I think the sentinel and another.  I was glad to hear that because the mammo showed they were enlarged, and then I had a CT scan of my body and also a bone scan shortly before chemo started, and there was no cancer anywhere else in my body.  So, I presume and pray that when they do the two scans again, I presume after radiation, that they will finally be able to tell me there is no evidence of cancer in my body. 

I'm telling you, lovely ladies who helped me and talked to me and everyone else, it's been like we were all sisters.  I DO think of this chemo group as my sisters, and I miss so many that have finished what they're doing and moved on to other things.  i myself have tried to post and join in with the surgery bunch, but it's so short-lived that I guess I don't have much to say, especially now that the drains are out.  I will tell them about that, but probably not today.  I'm still so tired, altho I DID get my walk in by watering the plants!  I guess my glasses fell off where I had them hanging on the front of my T-shirt, not exactly a secure way to keep glasses when you go out into the jungle. 

I know, I know, I've written too much.  But a lot has happened to me over the last week, and I honestly don't know how I got through it, and I had thought it would be easy, and I just wanted to tell you all everything, not only to help others, but to help ME.  Perhaps if I had not injured myself the same day as surgery, I wouldn't have had World War III going on with those dang drains.  Love to you all for listening and for always, Gail

Thanks SPECIALK, you made me feel so good.  I found my glasses where I had leaned over to pick up the handle on the hose, so I didn't have to look far to find them.  I made a mistake on my rant about Beauregard, I should have said "He worshiped US."  I put "up."  My drain place is much better today, but I'm quite tired.  I've been using my mini pillow the cancer center gave me to protect my arm from rubbing on where the drains were, but have temporarily misplaced it just now.  I have three quite painful places on the inside of my arm, aside from that rubbed place.  It's like a clamp was put on it from mid-upper arm to mid-lower arm.  It hurts inside mid-upper, then the place where blood is drawn, and then inside mid-lower, they are bruised.  I wonder what that was from!  And I also wonder where my front tooth went that the anesthesiology people knocked out!?!  Hahaha.  Thanks again, SK, you are so sweet.  GG

Well my appt didn't go too badly today. last drain out yay! Now I can get going on the phys. ther. I apparently have to improve this lock shoulder/range of motion thing before rads. I meet with radiologist for first time tomorrow. The doctor said I was at stage 3 on both sides, which is good to hear b/c I expected stage 4. Just worried about it going and showing up someplace else as my monster seems to keep wanting to surprise me!

 GG, are you watching the arm movement? The more you move your arms, the more fluid the drains will produce...Hope you rest and get recuperated soon!!  Love and hugs everyone!

JENNH, yes, been doing some Step One exercises before they took the drains out, plus I used that arm a fair amount but not to where it hurt, and then when they took the drains out, I'm up to Step Two exercises, takes a long time for the arm and chest muscles to return to normal.  Our cancer clinic gives us a little guide with lots of papers, one of which is the exercise we should be doing to keep things loose.  I had lots of stuff drain at first, then it gradually went down, I had to write down measurements.to show it was low enough to remove the drains, which they did exactly one week from the surgery.  One of them they could have removed within days, the other one over the weekend, but I waited patiently for my appointment.

SPECIALK, I've been massaging my sore left arm very gently, am thinking of putting cold packs in my armpit to get some of that down, and I have to read up on lymphedema some more so i don't wind up with that.  I don't know why that arm is bruised and hurts, was that way after surgery.  I remember when they put my port in, my whole neck was all bruised up, like I had been strangled, and when i finally got to talk to doc, he said yeah, they had a time putting it in, tried both sides, which explained the bleeding (bruising) I had around my neck.  I'm glad you've got a "hairline" now!  I have strands of white hair, too, it's not like regular hair, I've been thinking of trimming most of it off.

CHARLOTTE, thanks for the yogurt tip.  And DIVINE, bless you, too.  Hope you are doing well these days.  Love to ALL always, GG

ALL MY GIRLFRIENDS, 

I guess folks have wandered off into the hinterlands, to go back to their lives and such.  I thought there was some who had surgery left and then radiation, too.  Well, I had my surgery, and my upper arm is driving me nuts.  I've been posting over in August surgery a few times, that is an active group at the moment, so that helps.  It is not lymphedema, because it's just in my upper arm, and is a little puffy under the armpit, and then works its way over to my side where those stoooppid drains were.  I've been icing it and that has indeed helped.  I've put lotion, I've massaged, some arm exercise, the whole nine yards.  Well, I'll see doc Thursday, he'll tell me what it is.  Hurts some, all the time.

Then the rest of me is SO tired, my legs feel like I'm carrying a horse instead of the other way around, and yet other things are doing so well.  Like the numbness in my feet, some parts of the day it is really so much better, same thing with my fingers.  My bones stopped hurting.  But my mind is still confused, and I worry still over hiring some people to clean up my house...I feel like it's SUCH a mess that I have to do at least some sort of "pre-cleaning."  Am I nuts?  I wanted to hire some people today to come next week, and thought I'd straighten up to where it wasn't a total nightmare in my house.  And I have to go to the dentist.  And now I've decided to put all that off yet again.  I guess you might say I'm in a bad mood with nothing really relevant to say.  Sigh.  Well, I did just go through five months of chemo, surgery, lost my dog, my front tooth, and I'm just tired of hurting and having to do all this junk.     

I don't know where my manners have gone.  And I never did get my picture up in my bio profile.  But I guess the truth of the matter is, I'm gonna miss my chemo sisters.  I'm always the last one at the party, the last one to say goodbye, the last one to cry.  I have a powerful imagination and I saw all my chemo sisters as real people.  Just nice to stop in and say hello sometimes.  Oh, I'm sure a few will always come back, here and there, to check up at our old watering hole.  I'm just feeling a little sad. 

And just WHERE did FUZZY go?  Fuzzy, that business about computers being in the shop don't hold no water no more.  I miss hearing from you and that's the way that story will always be, I suppose.  Well, guess I'll spend more time over at surgery and then radiation when I get to it.  I love all of my Feb chemo pals forever and ever, such a warm bunch of girls, we were all so lucky to have found each other when we needed to.  I am forever blessed and so thankful, truly, despite my melancholy.

Love to all, for always, Gail

dogeyed - I am still here, don't worry.  I miss Fuzzy too and I think you are right - many of the ladies from the Feb group have gone on their way, but I will always check back in!  I agree with Binney it is probably a good idea to get a LE referral.  I had some arm pain from AND surgery which resolved as I healed, but that arm flared up with swelling and pain during TCH chemo.  I had classic axillary web syndrome pain/swelling/cording.  I was finally referred to an LE physical therapist and she has done wonders for me with reducing pain, massage, and improving range of motion.  Especially important since I finally had my left tissue expander put back less than a month ago.  For your sake I hope that you do not have LE and are just experiencing post-surgical pain (which takes longer to go away than we think!) but it would be better to know for sure, right?

Hi crog!!!  Good to see you, how are you doing?

SpecialK  It has been a long road.  Finished rads on July 21.  Skin is doing good.  I don't think I ever mentioned the trouble I had back in April while I was still doing Chemo.    I ended up in the hospital with blood clots.  They did a bypass.  Then my calf on my right leg started swelling and they had to do a fashiotomy (sp).  I was in the hospital for 2 weeks and then rehab for 2 weeks.  Well now my right foot is numb on the bottom and I have a hard time walking.  (they were not sure if I would ever walk again).  Today I got a brace for that foot and leg to try to stretch it so I can eventually walk more normal.  I also have shooting nerve pain in my foot.  My toes curled (hammer toes).  My husband every morning works on my foot and toes.  They are not as curled as they were so hopefully they are getting better too.

 Aren't you glad you asked!!!!!!!!

Cindy

SpecialK  It was vascular bypass.   Numbness is due to leg surgery.  Didn't have it before then.  They are not sure what caused the blood clots.  They said it could be from the cancer itself or the heprin they were using during chemo to clean the port... 

 Cindy

Thanks Paula66

Cindy

Hi everyone. I am still here- not every day & more often a reader/lurker.

I have gone back to work full time after recon last month. Been on Arimidex about a month too- up and down w/ that (bone pain that moves around). Seems to be getting better- was really nauseated when I first started Arimidex- but went away after about a week. Thank goodness.

I am on the hair threads- almost have enough hair to cover the scalp- but oh so short. Been going topless for weeks now- it was rugged at first- but folks who only see me every week or less are saying it's starting to get thicker. 

This board and boards have been a lifeline. Going tomorrow for Herceptin. It's so hard to be in that chemo room again. You all are the best.

Lisa

SpecialK  I still have a lot of nerve pain in my foot so I am hoping some if not all of the feeling may come back. 

Pejkug3  congrats on being done with rads. 

Cindy

WOW, it is great to hear from everyone!  Thank you, BINNEY, for the lymphedema tips... one thing I found out is both my folks had some lymphs removed and they said they also experienced what I am feeling, the swelling, sensitivity.  Actually, right after surgery for several days, my entire arm was swollen and I DID worry about lymphedema.  But then it went back to normal except that upper arm, and as I said, icing has helped.  Also, I did fall in the bed at hospital and pulled at my incision and drains, bled all over everything, so I think that contributed to my situation.  But anyway, I see my doc tomorrow, he'll look at it and make a decision.  He is ridiculously intelligent, talks just like my nephew who is a genius.

CROG, I cannot believe what happened to you.  Good grief!  Makes me feel like a bum whining about a little swelling.  Clots are ever so dangerous, I thought about it from time to time.  I am asking to have my port out tomorrow when I see doc, particularly now since I hear you consider the clean-out chem may have done this to you.  My labs came back after surgery and more chemo is out, just rads.

SPECIALK, I can't tell you how healing your words are to me.  There is something about you, like a leadership thing, and then this sparkling humor is SO amusing, I look up to you very much.  I also have peripheral neuropathy from the Taxol in my feet and fingers, but it has improved a lot.  I, too, have it the worst in morning, and then later in evening.  My fingers are the better, probably becuz I don't stand on them all day!  Ha!  Actually, I spend a lot of time laying on the couch.  My feet goof up my normally smooth walking, the swelling hurts sometimes, altho used to be very bad.  But even before cancer, my feet hurt from my back problems, which extend all the down my legs.  I think yours will improve, but like you, I wonder if I will have to put up with it for a long time.  I actually went out and bought new shoes a couple sizes larger than normal, and while it helps some, they still wind up hurting if I walk too much.  Sigh.

PEJKUG, I am glad you finished your rads!  Mine will begin sometime later this month, I suppose.  I have written my doc a note, ahead of my visit tomorrow, giving him a link to an article about how they can do three weeks instead of six, by increasing amount of rads.  I hope doc will let me do it, I have told him many times how hard it is for me to go places from my disability, my back is tore up and being in the car is insufferable.

ALL, I am feeling better since yesterday when I made my last post.  But I cannot believe how sore I am throughout my upper body, and I cannot believe how tired I am.  Yesterday I slept nearly all day, and last night slept in rather late.  Maybe that's why I was so tearful about everything yesterday.  Surgery just took it right out of me, that's for sure.  I put off a couple obligations and that helped.  I don't know WHEN I will be willing or able to start rads yet.  I was so strong pre-surgery, I felt I could do anything to keep this program going.  Now I'm quite weak.

 Well, THANK YOU ALL for putting in a little word here, makes me feel stronger.  Love always to my sisters, Gail