April 2013 Chemo Group

Hi Ladies,

Looks like chemo gets to lots of us!

I'm noticing how much my physical state is tied to my mental state.....anyone else? I'm doing TCH every 3 weeks. During the last week before round 2, I felt great physically. I went to my kid's activities and ran errands and FELT LIKE A NORMAL PERSON. I wasn't worrying about reoccurence or not living to see my kids grow up. Then, I had round 2 of chemo. While it hasn't been miserable, I'm noticing how much feeling sick makes me FEEL LIKE A SICK PERSON instead of survivor. I've been on the boards looking at stats and reading about metastatic cancer etc. I find myself thinking about not being here for my kids starting kindergarten etc. Funny how when we feel good physically, our minds are good. And vice versa.

Guess that's motivation to get out and take a walk!:)

Thanks ladies, for the honest words. In my heart, I know I need to go stay with my mom. Just such a hassle, and yes, I am used to doing everything on my own most of the time. UGGHH! My place is too small for anyone really to stay with me, so most likely will need someone to come take care of my pets/house.

Raindeer, I believe I will have expanders put in both sides, so sounds like this will be one more complication. Not too worried about the pain, I am already on heavy painkillers dues to my autoimmune disease, and have had little discomfort as a result so far. Looks like once my surgery is complete, will commence with Taxol treatment once I am healed (about a month). I am SO looking forward to wiping out chemo. Radiation is in the air, Drs. not in agreement. I am not a glutton for punishment, but the Dr. from the cancer center who drew up my tx. plan for my local docs recommended radiation, so I think I will end up sticking with her recommendations, despite how lovely it would be to NOT have to get it.

Monkeymom, I am with you! I am physically so wiped out, and I noticed my resolve to stay positive is waning, it is so hard at times! I too have crept on the stage IV boards, and thought the "bad thoughts". I think that is normal, the important thing is not staying in that state. I commented to a post on another board to a woman who found out that her cancer had returned/spread and did not want treatment, but wanted to give up. I commented about the power of the mind, and someone else came and commented to me, saying the mind has nothing to do with metastasis or formation of cancer. I do not agree (though I did not say so) - I do believe that if someone lives under perpetual stress and negativity, it can and will affect their physical health, including cancer. I totally understand everyone is entitled to their own beliefs, but I for one am working on creating a more stress-free lifestyle for myself, and learning to not sweat the small stuff. I hope you too can stay above the gloom, will be thinking of you!

Beherenow,

Glad to hear it went better than expected for you. I am planning to stay with family probably for the first week. I have 2 cats, but they are HIGH maintenance (Siamese) and very needy, like children. With me just gone for a week could send them over the edge, LOL. Oh, well, obviously I have to come first here! Thanks for the well wishes, I really think it is the anemia talking. I have NEVER been this tired. Can't believe I was able to sit at my desk all day without falling asleep Can anyone tell me how long the drains stay in?

Heather, 

I have two small kids and a dog so I needed some extra help after my bilateral...but as far as the recovery, it wasn't nearly as bad as I had anticipated. My pain was minimal from the actual surgery. The tissue expanders were very uncomfortable (they have since just become a nuisance) and made it difficult to lay or sit in a comfortable position. My biggest hurdle was lifting. I couldn't lift my 1 year old into his crib, car seat etc. I also couldn't put dishes away in cabinets that required me reaching high up, vaccuum, drive (for a week), walk the dog, and other things that required a large range of motion. 

As far as the drains go, I'm a wimp so I didn't want to empty them myself. It took my husband just a few seconds before and after work to drain them. I had 1 in a week and the other in 10 days. They were really no big deal.

Glad you have family to help out!

Heather,



I understand the worries about your upcoming surgery. I on the other hand had a lot of help but found I didn't need it. The pain was very minimal. The drains were the worst part. Honestly they're just gross, lol. It was weird for me to see all of the fluid and measure 3x a day. I'd say the hardest part was removing the bandages and seeing what wasn't there anymore. The nurse that helped me said something ill never forget. "You are not defined by your breasts, you're beautiful". The same is true for you. For all of us.

Heather- I had 2 drains from my L mastectomy.. I'm a nurse, so had no trouble managing them.. If you have good teaching- they are easy to care for. I had more pain than I expected-- but had good pain meds..If you take them on a schedule- it's manageable.. Little by little try to move your arms as much as possible.. I had a hard time moving my arm a month later because I favored it so much. I needed my husband to shower with me so he could wash my hair and help me ( he didn't mind at all- and actually "helped" me longer than I really needed him too!! Lol)

I have a tissue expander in and think that caused most of my pain.. It's a foreign stiff object in your body.. I'm now more than 2 months out from surgery and can pretty much do anything.. I still have some nerve pain in the breast- but nerves take a long time to regenerate... But it's so mild...

You should have someone stay with you for at least 48 hrs after surgery.. Just so you don't push yourself too far.. That can hinder progress... Good luck!!

Chemo World Announces its Newest Attraction

Look out everyone! It’s the newest coaster sensation that will leave even the most jaded of coaster riders breathless. Now, only at Chemo World Fun Park: it’s The ChemoCoaster!

Start out in the Alley of Anxiety where you ride slowly through the dark tunnel with plenty of time to anticipate what is to come, all the while hearing the screams of excited riders ahead of you. Then, with a sudden turn, you sweep through the nausea-inducing thrill of the Hurl Swirl. Next, brave Nasty Neulasta’s Curve, which will throw you into the Side Effects loop-the-loop.

You’ll hear the tick, tick, tick of the coaster as you gradually climb higher and higher up to the top of the Steroid Hill of Horror. Just as you start to feel safe and enjoy the view from on top of the world, you reach the summit, only to plunge breathtakingly through the darkness of the Dungeon of Despair, then hit bottom in the Tears of Fears splash pool.

As you dry off, enjoy the fun of the Pity Party as Nasty Neulasta, Awful Emitica, The Constapator, Dire Rhear, Ragin’ ‘Roidy, No-Nails Nancy, Bawling Baldy, Anxious Annie, and all of the other fun Chemo World characters come out to dance and sing to the Chemo World theme song: Did you take your meds tonight?  Finally as you roll toward the exit, hairdressers with shavers leap out and cut off all your hair! Then, just as you begin to catch your breath, you realize that THERE IS NO EXIT, and you are sent around again for another thrilling adventure through...The ChemoCoaster!

Disney and Six Flags, eat your heart out: you’ll never have a ride as scary as this one!

Ride and characters trademarked by the Ivey Corporation. All rights reserved. 

PamelaKay: That was awesome!! So true, I especially can relate to Ragin' Roidy...actually all the characters have made an appearance for me except No Nails, I think she may come during taxol. Thanks for the laughs!!!  Irene G

You know I hate rollercoasters. But you started my day laughing once again. If we cant make fun of all we go through who can. Love it and thanks.

Still nothing on my blood work. That's what you get living a very small town I quess. Today I leave my small log home in the Adirondacks and go back to the valley. I so love the woods but black flys are back! Being very careful when I go out! But I love splitting my week in both places.I am truly blessed.

Thanks Pamela for the Roller Coaster ride review.

I have only been through the Alley of Anxiety and today head to the Nasty Neulasta curve...wishing the roller coaster was as fast as a real one!

Pat

https://www.youtube.com/watch?v=0WpNSImh6Z8

HOLD on and Enjoy the RIDE~

Oh my goodness, THANK YOU LADIES - YOU ARE SO AWESOME! I felt so bad physically this morning slumping in to my desk, only to sign in and see all these great tips and advice. It greatly lifted my spirits! I wish I could address them all, but rest assured I heard everyone, (Indenial, thanks for the honesty- truth is I need to prepare for the worst but hope for the best, right?)(Rosina, teared up reading about having to see your scars, I think for me that is when this all will become 100% real, and I can admit I am terrified to not feel whole anymore when I do.)

I do have my 16 year old at home, but truth is she can barely cope with having a mother with cancer. I don't want to burden her. So, we will stay with my mom for a week, and a friend will come take care of the pets. The drains by far are the most daunting to me, not worried so much about pain. I feel like such a baby, I am working full-time, doing chemo, parenting. I think anytime I feel out of control, as with the BMX/surgery I freak out. But, I know this is one more step in the process of getting well and healing, physically and mentally.

THANK GOD FOR PAMELAKAY- who is keeping us cracking up through the tears and fears!!!

Thought for the day:

You never know how strong you are, until being strong is the only choice you have...

Heather,

I had BMX on March 6th, I had a nerve block similar to an epidural before surgery in addition to general anethesia. They did it because the brain still registers pain even under general and that the nerve block cuts that signal so your heart rate does not accelerate during surgery.  After I had very little pain for the first 2 days. I only stayed one night at the surgical center and the nurse kept reminding me to call her when I wanted to get up...well when you gotta go you dont want to wait..so I didnt. 

I wont lie, the drains are a pain, they are awkward and get in the way even pinned up. My husband stayed with me the first week. It was hard sitting up by myself after the nerve block wore off and I could not reach anything above ear level. I also had TE's so I was not allowed to lift more than a pound. I could not open jars and doors etc....He even had to help me get dressed due to the fact I could not reach over my head. I strongly suggest getting some big open front comfortable shirts to wear. You will be able to empty your drains by yourself no problem.. just a bit gross! I kept mine pinned to the beautiful post mastectomy bra they send you home in. My drains both were out by 10 days post surgery. Its much more comfortable after they are removed.

So yes, if it is possible it is helpful to have someone around to help with the drains, lifting, and reaching for a couple of weeks. My friends brought covered dishes for my family for the first two weeks because my DH cannot cook and I have two teenage boys at home still...

 I don't mean to scare you....its not nearly as bad as child birth but you will be restricted in movement. Last bit of advice....take your pain meds and ducolax..trying to go without them was a mistake for me.

I hope all goes well for you....You can do it!

I keep yanking at my hair looking for it to come out but it isn't yet. I lost one hair this morning
I'm really looking forward to starting over again with fresh natural virgin hair. It's exciting for me because I'm always dying my hair pink or blonde or red and wearing hair extensions constantly. I haven't worn my natural hair since I was a teenager.
I have my buzzers ready, glad I know how to do it myself. I might let my son do some

One of my oldest friends works at a wig salon in NYC that caters to chemo patients.. so he made me wig and it is so nice I can't wait to wear it!

Party time ,blood work back back in the 5.s. So chemo tomorrow. How weird is it to be happy but I know you will understand . I have been checking my hair and today it is starting to come out. So by tomorrow is day 14 so I'm just like everyone.Have to stay at my daughter's tomorrow so she takes me back for the shot. Maybe it will hang in until I get home Thursday.I want my hair dresser to do it!! So today was a real bad roller coaster. So now for a happy pill that I need badly .