February 2011 chemo pals

It's crazy what we are going through! I hate cancer. Melanie I'm sorry to hear about your arm. I hope its early enough for it to be reversed.

Special k I feel for you and the wedding thing. I was a bridesmaid last Friday at my best friends ceremony here. She was married a week before in Cuba and I couldn't go, but she really wanted me to be a part of her friends and family ceremony here. The little sundresses we bought last Sept. were cute until... I gained 8lbs, grew a third boob, had a pick line installed and lost all my hair! Fortunately chemo shrunk my third boob enough that with some tape I managed to stuff it into the dress,( along with the rest of my body) Plop on a wig and ingeniously hide my pick line with a hair scrunchy. These are pictures I never need to see!! The things you do for your friends.

This is my good week, plus Easter and my birthday. The weather is supposed to be nice this weekend so I think we will kick it all off with a family BBQ, Easter egg hunt and mini golf in the backyard.( I'll wear sweatpants a large t-shirt and a hat)

Hope everyone is as comfortable as possible. 

Hey Lisa,

Good luck tomorrow.  Keep us posted on how you are doing when you can.  Sending you a hug!

Kathie

Heading out this morning for my 4th round (out of 6) of chemo treatment.  Please keep me in your prayers.

jenn - I am starting to feel (and act) like that old lady on that show with Carol Burnett!  That was so funny I almost spit coffee all over the keyboard when I read that!

GG - I already have a falsie in there!!!!  I have a drawer full of different shaped ones!  Some are foam, some are rubber, some are little beanbags...The problem I am having right now is finding the right falsie/bra combination!  Because I have an expander on the right and nothing on the left the bra rides up on the left even with the falsie in it, and smushs the falsie up and out the top!  Can you say "wardrobe malfunction"?  So far it has only fallen out of my top in my own kitchen!  Sometimes it migrates to the middle if I have on a bandeau type bra which is the most comfortable.  I am at the point of pinning it in so it can't get away!  I actually went to the American Cancer Society Hope Lodge and they gave (yes, gave) me an actual prosthetic. My insurance will either cover prosthetics (they are about $200-$300) and mastectomy bras or reconstruction, but not both. It is far more comfortable but much wider.  I like it because it is flat on the back and actually lays against the skin.  I need to go to the fabric store and get something so I can make pockets in some of my old bras that I took the underwire out of to hold the prosthetic in place.  I was looking for a dress with ruffles on the front to disguise the whole shootin' match.  Even if I look even on the front I still get nervous about it.

Sukie - I feel you on never wanting to see the pictures although I am sure you were beautiful!  I have even looked back on some pictures taken after I was diagnosed and I look so tired.  My daughter took some really nice pictures of me on the morning of my mastectomy and I had them framed for Christmas for my husband.  Those were probably the last good ones!

divine - good luck today!  I am right behind you tomorrow with #4.  We will be 2/3 done - yay!  Thinking of Lisa GH today and dragonfly yesterday.  I just went outside with the doggy and there were hundreds of dragonflies!!!

mamaoftwo - I need the TE back in!   I had a BMX with both TE in November.  I had healing issues on that side (prophy) and my PS elected to remove it after operating on it 3 times.  My other has never been filled since placement during the BMX surgery.  After chemo I have to have the left put back in, fills, then exchange.  Now that the weather is hot I am increasingly challenged to find clothes that are appropriate.  It is a good thing that ruffles seem to be in right now!  I was wearing the looping scarf in front but now it is too hot! Especially with a wig!

Thank you for asking GG.

I did get my Taxol today after all. The oncologist was concerned, yesterday I developed a full facial swelling and the pain moved to the side of my head and my ear. When opening my jaw wide, it would hurt inside my hear. Also, the roof of my mouth.

However, last night I started steroids in preparation for my Taxol today, and this morning all the swelling was gone, and I had no pain. The oncologist wanted to look at my upper chest, and I unbuttoned my blouse only to see a horrible rash on my chest and neck that wasn't there earlier today. While he looked at my teeth, throat, ears and facial bones, the swelling completely disappered. He thought it was the weirdest thing and sent me for x-ray of my sinuses. He wasn't going to give me Taxol if it showed any signs of infection, although my blood work was fine.

X-ray turned out fine as well, all too often sinus infection can't be seen on an x-ray I guess. Waste of radiation, they took 6 pictures! I didn't get my antibiotics, he thinks it could be some sort of neuralgia or bone pain, so he prescribed Tylenol with Codeine (2). We'll see.. I am having some pain this afternoon again, and took an Ibuprofen. Looks like its helping for now. Although the swelling creeped back few hours ago and its still there... 

If it persist, I guess I will go see my dentist, but he will want to take tons of xrays as well and the oncologist said all teeth and gums look fine. I guess he doesn't have x-ray vision, so that doesn't mean much. 

I just discovered a golf ball sized swelling of my supraclavicular node.

Its soft, non-tender. On the left size, above from where my cancer was. Seeing my GP in 2 hours.

Oh, darlin MKS, I hope your doc visit explains SOMEthing.  We are all on the edge of our seats with your developing story.  Last year I had sinus and tooth infects drain down to neck AND armpit lymphs, maybe some nodes are clogged since infection-fighting is low during chemo.  Goldballs and rash, tho, that's something else!  Hon, I hope they give you antibiotic, that should destroy whatever infection you got, if that's what you got.  I actually thought my cancer came from when my tooths infection went to my armpits... not realizing those lymphs were already enlarged from chemo. 

Special K, I about died laughing reading about your falsies saga!  Too funny, girl.  Maybe you should do a chest wrap of the whole works so you'll be flat all over.  But if THAT pops loose, well....

I took my Taxol yesterday, they said it had benadryl in it, so I slept thru most of the two+ hr fusion (confusion), but have been wide awake ever since, stayed up until 2 a.m. last night, got up at 5 a.m., and I had been SO worried about it, but no big deal at the time at all.  Just buzzing along.  One lady as she went into the chemo room before me, this nurse greeted her at the door and apparently got some rub shock on herself and said to the chemo patient, "I hope I didn't shock you," and the patient said, "Well, it's a pretty shocking situation."  I laffed and laffed.

Yesterday afternoon my busted-up-back started hurting, so doc assistant faxed in some extra pain meds.  You know, I've already told the story how my cancer doc decided I needed "improved pain control" when I freaked out and almost left the program, and yet it was forgotten when I started that week's chemo, so I had to ASK for it, which was a little of an ordeal, and then they simply doubled my prescription, which helped enough.  Wellll, I saw the doc assistant day before this last chemo, and again I had to remind them, and she looks at my record and said, "Gee, you used up all 30 pills since last time, that seems like a lot."  Grrrr.  I really like this woman personally, but gee whiz. 

I fumed inside, but I said, "If you'll read the label on the bottle, it doubled my stuff, it says one or two tablets every four to six hours, and that means I could have used them all up in less than four days had I followed that instruction exactly, but I spread them out over about eight days."  I was so upset that I cried.  I felt I was being challenged unnecessarily, especially since I been taking all kinds of pain drugs for many years, I'm disabled from my hurt back.  And literature says most people don't have "addict" trouble becuz if they take pain pills for REAL PAIN, so they don't get all buzzed up on it.  And ALL THIS when I never asked for it... doc offered it outright.

Then she seemed so surprised when she did my physical that my whole back hurt.  That was half the reason they give me the pain pills to begin with two months ago.  I told her at least twice that morning about my hurting back, plus it's in the record, or so I thought.  Well, I didn't get my prescription that day either.  Went home next day after chemo, back started hurting pretty bad a couple hours later, the cancer clinic called me about something, and I just let 'er rip about my back and that I didn't get no prescription.  Well, guess the lady on phone was sympathetic enuff, that within 30 mins they called back and doc assistant faxed in some pain pills for me!  It helps the back pain somewhat.  The chemo really makes old hurts much worse.  I keep waiting for my feet to hurt, that neuropathy thing like diabetics walking on glass, that some of you all got with Taxol.  I got it during my AC chemo a couple times. 

I heard on TV the FDA or some bunch in D.C. who are just gung-ho "drug war," that they're planning on taking away a bunch of addictive scheduled drugs from patients except for those who are terminally ill.  I'm fixing to write him a letter (I KIN write, fo sho) and explain to him if he was riding in a car that fell off the road into a snowy ravine and busted his back up in three places and spent two months in the hospital, what would be HIS plan for exquisite pain (the most you can have, right up there with childbirth).  A few people goof it up for all of us, I guess.   

Hope everybody keeps hanging in.  I keep singing U2's old song, "Without You," where it goes, "On a bed of nails she makes me wait, but I'll wait for you, with or without you, with or without you."  A dear friend of mine was all crippled up from Muscular Dystrophy, he died two summers ago, and we both shared interest in U2 and Bono and Edge.  If anybody here hasn't listened to that old album, "Joshua Tree," it's well worth a spin.   Love to you all for always, GG  

Hi All,

Home from tx#4 - uneventful, just like I like it!  But I did make a new friend "Miss N" who reads here but isn't a poster.  We discovered we share the same BS practice, and she recognized my avatar picture.  So, here is a shout out to you!  I hope you breeze through your treatment today and all that remains for you to be off this e-ticket ride!  I enjoyed meeting you and your friend.

dogeyed and mks16 - I hate that you are in pain and having issues!  Of course, I will probably be right alongside in a couple of days!  GG - my husband is newly retired military and one of the Generals in his command has been treated with narcotics for many years due to line-of-duty military and PT related injuries.  He has been to rehab while active duty and has been very outspoken about how to manage chronic pain.  When you have that kind of pain it must be relieved!  He spoke out of concern for all these kids returning from Iraq and Afganistan with such serious injuries and what their futures hold for them on this issue.  It was a bold move for him to let the public know of his own pain management struggle, but I admire him for it.  It is a tough situation.

I wish for mild SE's for all this week who have had a tx, and if it is your "good" week go forth and enjoy!

Kathie

melanie - do they think this will solve the problem or only manage it?  Can you link a cause to the sudden swelling or was it for no reason?  What a pain to have to get up earlier to have to deal with this, you deserve a whine!  A hug to you.

Went to Roswell yesterday and had my surgery scheduled. Dbl. mastectomy (that's BMX right SpecialK...i need to learn all these things!) June 29...I am a little worried about all that especially after reading about all the falsie probs!! I will only be in hospital overnight (I kind of expected more) so that seems a little scary, will have to drive home 2 hrs afterwards! Special K, are TE's temporary expanders? I cannot get reconstructive surgery for 6 mos to a year after, mostly due to the fact that I will need rads after surgery.

I am so happy 1 week after first Taxol treatment to finally feel better. I will be asking for some hefty pain pills for the next one. I'm not sure I have ever been in that much pain. I felt almost like I was in labor for three days straight! Is anyone getting a good pain med they would recommend? It's making me worry so much about those next three treatments...

Hope everyone has a nice holiday weekend, we are visiting family in Michigan and shopping and relaxing!!

Oh GG - you are sweet for that compliment!  You have to know that in my current state of affairs I don't look much like that picture.  I was so very surprised she recognized me from it!  I had my underhair and a ball cap on - definitely not glam!!!

Jenn- yes BMX is bi-lateral mastectomy meaning both sides.  And TE is tissue expanders.  I think the delay after rads is pretty standard time frame but take super careful care of your skin.  I think many PS (plastic surgeons) like the patient to be fully expanded prior to rads because of the potential for compromised skin.  By the time I am done with recon it will be probably more than a year from diagnosis.  My case was not usual with having the left TE out.  It was strictly a skin healing issue based on the kind of BMX I had.  I had leftover Vicodin from my surgery which I took after my first Taxotere tx.  It worked well.

Fuzzy - sorry about you not feeling well.  Do you have anti-nausea meds?  Make sure you rest, ok?

marie, thanks for thinking of me.....yes, #4 out of the way, altho dealing with some SE, not too bad right now, but definitely have the blahs.....some of that could be the weather, such a rainy April and it rained all day today.  Temps around 55 degrees.  Have a new rose bush I'd like to plant but not getting to it today.  DH is keeping me company and having a relaxing day off from work.  Yes, defintely I observe Easter Sunday so thanks for the holdiay wishes...I send them back to you and all the other ladies on bcorg who observe.

Hi ladies,



Checking in melanie, sorry about your arm hope it clears up soon. MKS you have so much going on hope you feel beefed soon. Fuzzy so sorry you are not feeling great. There is a lot of adjustment going back to work.



The rash seems to have cleared up with the hydrocortisone cream, moisturizer cream and the premeds in IV for taxol (benadryl, zantec and decatron)



Feeling more joint pain this round ( #2 taxoll DD). I was infused last Thursday Friday and Saturday felt great, aleve managed the joint pain I had. By Saturday evening both knees hips and back were baching. Had to take more aleve seems like it wears off after about 6 hours for the first few days.



Still better than EC. No nausea or headache and my brainis not as fuzzy at work on Monday. By the next Wednesday pain much better. I took a vacation day this thursday, just to have a nice four day weekend that did not involved chemo



I still get the weird pain in my right eye, more like muscle strain. The only post chemo med I have is the nuelasta and that might be causing some or all of this. Then again we have had so much rain which normally make me achy - the difference now is both joint get it instead of one.



Special k you have a great gift for story telling you have made me laugh with so many of your posts. Good luck with outfitting your self for the wedding. I don't know how you do it in Florida . I end up pulling off the wig and Cushing to the scarves so many days at work. It seems that the new chemo hot flashed concentrate in my scalp!



Happy Easter to all those celebrating this week, and happy passover to all those celebrating last week. Happy birthday to our birthday girls and good luck to all of us.....I am so looking forward to that last chemo on May 12!



Hugs to all



Jean