April 2013 Chemo Group

Virginger

well, can't sleep. ugh..

.indenial I've been thinking about you all night and really didn't know how to reply. I'm single, no kids, never married, and live alone, but have lots of support. I'm ADDICTED to the Internet and ususally have 4 or 5 windows open at the same time...example right now, I'm playing slots via FB...on FB...on Pintrest and have a tweeter page open...the TV is on too....day two after treatment #2 and I've had in excess of 18 glasses of water, put clothes in the dryer, ran and emptied the dishwasher, and had some friends drop off some soup. It's not much to many I'm sure..but keeping my brain active and not dewling on this CRAP i'm going through has really helped me...

I'm FAR from perfect, I'm still struggling smoking and just 'cheated' and had my 2nd diet coke since chemo. I'm having to use the miracle mouth wash every 4 hours because I didn't go to the dentist before my chemo treatments and have a tooth that is TRYING it's hardest to FALL out....so I'm eating soft food and only chewing on the right side of my mouth...I'm doing this chemo as a  preventative measure, but by trusting my doctors and family who I know want the best for me, I'm TRYING my damnest to look at the glass as 1/2 FULL and not 1/2 EMPTY....the only time I've cried is from some of the outpouring of Love and Support I've gotten by sharing what I'm going through. My High School buddy shared with my class what's happening and my mail box has ususally had a get well card that brightens my day know SOMEBOBY is thinking and praying for me. I lost my mother in '07 to Alzhiemers and Lung Cancer but have been blessed to have Other Older women step into that role for me. I agree it SUCKS and is never something I'd ever imagin would happen to me...but that just it...it's in your outlook. I've been helped by other in this battle so I'm doing my BEST to pay it forward and getting MORE rewards than I ever dream...

I hope you can find peace and exceptance.

Koru_

@Virginger:  insomnia here, too!  And my Round #2 isn't until Thursday.  So, I don't know what that's about.

@Irene:  It looks like our regimens are similar, I'm on carboplatin, taxotere and herceptin with a neulasta shot with each round planned as a preventative to neutropenia.  My first round was especially difficult; although I took a Claritin daily and followed the regimen of alternating ibuprofen and tylenol every 4 hours my bone pain was so significant that I had to lie down and couldn't sit up for 2-1/2 to 3 days.  I also developed very severe mouth sores - and when the MO says, "Holy S**t!" when he looks in your mouth you know if must be pretty bad!  Anyway, they gave me the "magic mouthwash" which caused me to hurl; then I was changed over to MuGard which was much more palatable and my mouth was well on its way to healing in 24 hours.  They will prescribe lortabs for the bone pain for the next round just in case it is as bad as Round #1.  I consider myself a pretty strong and positive person, yet in the midst of the worst of Round #1 I couldnt contemplate how I could possibly endure this 5 more times.  Yet, as I'm sure you know with our mutual status of being her2+ the protocols are particularly aggressive because we're dealing with a particularly aggressive cancer.  I encourage you to talk to your MO about what can be done to minimize and manage the SE's more effectively.    I went for fluids on day 7 of Round #1 and the anti-nausea, steroids and fluids in that infusion had me feeling 100% better within 24 hours too.  I know we're all different, yet I guess I would like to think that something can be done to help you get through the worst of it.

@indenial:  Hang in there!  Do you have a nurse navigator or social worker at the hospital?  You may find that there are volunteers that are cancer survivors that may be able to offer some practical support, (i.e. running errands, cooking, helping with chores) and emotional support.  Sometimes you have to ask for what you need; especially when it is hard to ask.  I'll be thinking of you and beaming over some positive energy your way!

So, Round #2 comes up for me on Thursday.  I'm finding myself somewhat encouraged by what you all are reporting in from Round #2.  I missed a week of work from Round #1 and hope to minimize that for Round #2.

My niece had a bilateral mastectomy on 4/29 and I'm scheduled to take my great nephew (10) and great niece (7) to school on Monday.  It has been a double whammy for my family (she is my niece by marriage not blood related); both of us being diagnosed within 45 days of each other.

Okay, I'm going to try to close my eyes again for an hour or two; hoping to be up to go to the beach with some girlfriends in the early morning hours of the day before the sun gets too high and it gets too hot out.

Happy Cinco de Mayo! 

6cats

Irene1975 -- I too am on preventative chemo. I have a son who, If I mention I have cancer, says "no you don't" (He's my 25yo who truely thinks he will live forever). But, in some ways that's correct... except for one thing... I am HER2+ which is an agressive cancer... that means I live with the "what if they missed something?" Also during my lumpectomy, they found a second 8mm tumor that didn't show up on ultrasound or mammogram... so "what if they missed something?"

But my second biggest reason for continuing with the preventative is that on my one week exam (post first chemo), my MO found a lymph node swollen large enough for her to measure it (on my BC pit). My doc said this is probably nothing, just a cyst, or a side-effect from surgery. My logic says says that of course I have swollen lymph nodes, think of how my neck and tonsil area swell when I'm fighting infection. But my fear says what if... What if they missed that one cell that could be going bonkers in my body. So, I'm willing to add a little to the odds to stay healthy.

My biggest reasons for continuing with preventative is a combination of my family and my dreams. I have things I still want to do -- and must be alive to do them. Also, I have a new (for me) husband of six years. He swears he can't do it without me. I happen to believe he could... but he doesn't.

I don't know if this will help you make your decision about continuing preventative chemo... but I know I had to think about it. I can't imagine devoting 20 weeks to chemo and another 42 weeks to Herception (for HER2) -- that's sixty-two weeks of my life with someone poking my port -- very overwhelming... but I want to make sure I have the best chance possible of being here... maybe seeing grandchildren... hunting in the woods... finding morel mushrooms (or at least eating the ones my son finds) and doing everyday things like cooking dinner for those I love.

Good luck on your decision....

AllieM

Lynn - My youngest son is 24 and he sounds just like yours. Says he doesn't believe in cancer. He also just decided last month to move to Hawaii and work on an organic farm and is leaving Tuesday. So, now I can add being depressed because my son is leaving.

Irene - Even though I'm miserable and consider quiting chemo on a daily basis, I'm probably going to stick it out as long as I am able. I've only got 4 treatments, so I've got it a lot easier than some on here. I just know that if I quit I'll drive myself crazy worrying that I didnt do enough.Like someone else on here said, there's still a lot of stuff I want to do.

My MO said I can use Claritin next chemo because I'm going to get the Neulasta. I was surprised because so far he's said no my previous ideas.

My chemo is postponed a week because I'm itching like a crazy person still. I've tried everything I can think of and nothing is working. My MO is going to send me to a dermatologist next week if I can get in. He's still trying to tell me its not the chemo, but I've never been allergic to anything in my life.

I feel like I should be putting something positive on here, but nothing's coming to me...oh ya, chemo is delayed at least a week.  I'm sorry to say that it does actually help to know that others are as miserable as you are sometimes.

OnaWing

Anne in NY, I now know chemo brain is real because I read your post and went into panic mode thinking I sat at breakfast this morning with my Mother (who arrived just yesterday for a visit) and didn't even tell her happy Mother's Day. I'm laughing at us both when I look up and Larry the Cable Guy is on the history channel. It's even funny that he is on the history channel since he's not particularly educational, but that guy is hilarious, I highly recommend him for a great antidote to the BC blues. Most of us are not laughing much these days and we forget it's good medicine. Think I'll look for some good comedy to download and take my medicine daily.



Chemo number two tomorrow and I'm trying to get myself psyched for it. It's tough knowing what's coming at the same time you don't know what's coming or how bad it might be. Isn't it exhausting to be continuously focused on every little twitch of the body and fear it is the beginning of a critical SE or even worse, a metastasis and to know that this feeling will be with you for a long, long time? Beginning to think a therapist might help and looking for some spiritual healing too. Sounds like a wreck doesn't it? Physically, emotionally and spiritually unhealthy all at the same time.....



Well my sisters, I hate that we are here, but thank you for being there (for us all) in a way that no one else can. You are a lifeline in so many ways. Warm hugs to all.

indenial

Spent the night in the ER... my "very light" period turned into a crime scene... they gave me meds to stop the bleeding and I may need to get Lupron shots for the rest of chemo?? Ugh. Was just starting to feel a bit better (both physically and emotionally)... now I'm wiped out and pretty anxious. Guess I need another day or two of laying on the couch staring into space!

I also have bumps all over my head... anyone else? It's kind of like acne, and pretty itchy! Oh joy... chemo is so fun...

AmyJax

I read InDenial's post last night and my heart went out to you my dear. A couple of days ago I was feeling really defeated and alone too. My chemo is delayed, I have a stubborn drain still putting out too much fluid, my expansion was larger and more painful, I was supposed to go get the port put in for the chemo I wasn't sure I was going to start, I still wasn't completely sure which chemo to do, and I've arrived at the realization that I'm going to have pain that I'm going to learn to live with for an undetermined amount of time.....it's all just incredibly overwhelming. Beyond overwhelming.



I proactively pushed my chemo and port knowing that this drain is still so active. That simple act of control made me feel a bit better.



I also found some meditation podcasts and downloaded them. I've never meditated before but I was searching for something to help. I'm secretly hoping I can meditate my drain site to heal.....(worth a try). They HAVE helped to relieve some of my emotion and stress. You can get them on iTunes for free or from the Website: Meditation Oasis by Mary and Richard Maddux.



I hope today is a better day for you InDenial - and everyone who is feeling low. It's finally sunny where I am....first sun in four days. I'm going to go for a walk. Peace to all pink sisters.

Retta175

InDenial....I'm sending prayers your way.  I understand how you feel. My friend of over 20 years can't seem to find the time to call me.  I have realized I have been her friend through thick and thin but now when I need her...its a different story. But, thank God I have a wonderful family and I will make it! Just like you will! I try and tell myself its just a year...I can do anything for a year. I want to see my granddaughters grown. Life will get back to normal and we will be stronger women for it!!  Peace to all this rainy Sunday.

LakeGirl2

AllieM what chemo are you doing? I am on taxotere/cytoxan and have had rashes sincec the beginning. I am on claritan daily to control the rash, have a steriod cream when needed, and can take hydrozine which makes me drowsy when itching. It has resolved for me but itching is awful, and I feel for you. I hope you can get some relief. My MO did tell me it was a side effect but could be an allergic reaction if it crops up within a day or two after chemo.

PamelaKay

Indenial, sending you a huge bunch of wonderfully fragrant e-flowers and a thought for the day (poem and photos by my son). I hope this will give you something lovely and calming to contemplate as you rest and recover. I'm also sending Phoenix Rising, my healing spirit totem, to help you through. She is a beautiful red and gold phoenix who wraps her wings around you in a gentle, healing embrace.

PattySmiles, hope you like the Buffs! I use them on their own when I am at home because they are so light and comfortable. When I go out, I dress them up. Yesterday DH flew me to Mariposa in the Sierra foothills (he is a genaral aviation pilot) and we went to the Butterfly Festival. Had a great day, and got compliments on my Buff/scarf/chain combo. It was windy, and the scarf kept blowing around (I put the long ends over my left shoulder to disguise the missing half), so I picked up some pretty butterfly clips to weight it down. The Mission Mine videos were a great help in getting ideas on how to make the scarf work. 

6Cats, we do seem to have similar paths for our treatment. I just hope I can keep on schedule, although things aren't looking so good right now for the healing (worse, actually). Glad to have you as my "chemo companion" (this is different from being glad you are having chemo!).

Coming on Chemogate: At her last appointment, Dr. D announced, "THE FILLS WILL GO ON!" But our lopsided heroine is afraid: will the fills overstretch her already stressed skin? And how will Dr. J react to Dr. D's pronouncement that she is overreacting? Find out next week on Chemogate!

Pamela Kay

Virginger

word to the wise ladies....after a SLEEPLESS night...DON"T wait too late to take your steroid pills day after treatment...10pm was WAY too late and after a sleepless night its a totally couch potato day...weather is perfect for a nap but can't get my BRAIN to slow down...think i'm gonna have to down load those mutational pod casts!

indenial

Virginia, hope you can slow your brain down enough to get some rest. I have been watching lots of TV, I'm not usually a TV person but it's one way to get my mind to calm down enough to rest!

Pamela, I love the poem & photos, it made me tear up, that you for sharing. Your son is really talented!

Thank you all for the positive thoughts/commisseration/prayers/well-wishes. I know I will get through this, we all will. It's so good to know I'm not alone, to hear from others who understand, to be able to lift each other up and give each other hope in the middle of all of this.

And hey... between my pity party and ER trip and general yuckiness I actually forgot to rejoice because I'M HALFWAY DONE!!!!!!!!!!!! YAY!!!! I'm visualizing this like a big hill... and right now I'm at the top of the hill and just need to glide on down.

AllieM

Lakegirl - I am on TC, too. The first chemo I got a rash that covered the front of my neck and chest on the 4th day after, but I took some Benedryl and it went away in a day. This time I have what I think are hives that keep popping up all over the place including the palms of my hands!  Last night my whole foot got read and swollen. The benedryl seems to keep it from getting totally unbearable, but doesn't make it go away. I've also tried Clariton, Zyrtec, cortisone cream, benedryl cream, calamine, oatmeal and baking soda baths.  Putting ice on it helps with the itch temporarily, but who has enough ice packs to cover their whole body?  Hopefully, the I will get a dermatologist appt. this week and they can figure something out. I am kind of relieved that chemo is postponed a week, even though that's a week longer till I'm done.

Indenial - Congrats on being half-way there!

I think my head is the only place I don't have itchy bumps! Sorry that you are having such a tough time. In my case the people that I expected to really step-up and be supportive have kind of faded away, and a couple of coworkers that I wasn't really that close to have been life-savers. The most surprising is that my sons have pretty much decided to ignore the whole thing. I guess they just don't know how to deal with it.

I can't pay attention long enough to read and comment on all the posts, but I do so appreciate everyone's kind words and positive thoughts. It makes it so much more tolerable knowing that y'all are out there.

Pattysmiles

Happy mothers Day Anne! (Twice over!)

PamelaKay

Indenial, so glad you have seen the light at the end of the tunnel and have found a bit of equilibrium. Hooray to halfway!

BeHereNow

Hi all, I hear you on being miserable. The depression for me has been intermittent. It's awful! Sending big hugs to everyone.



My son is grown, so my heart really goes out to those of you who have children at home. I had bowel obstruction surgery (spent time on a respirator, and took months to recover) when my son was 13. It was hard to be so sick around him. He helped take care of me...slept on the floor by my bed to help his father monitor my needs. I cried so many tears. It took a long time for me to find peace about it, but I did eventually. I don't know what I would have done if my son had been younger.



I am in week three after my second chemo, so am actually feeling pretty good right this minute. I'm going to try to enjoy this week... Chemo#3 is next Monday.



I went on a brief business trip over the weekend. I flew wearing gloves and a mask. I am exhausted. I gave a motivational speech to about 350 people in a breezy tent, wearing my wig and fake boobs. Very stressful!!



The hardest thing was that I mentioned my BC briefly during my talk, and then after my talk, people were saying things to me like, "I hope you make it!" Really? That was so upsetting to me. I had to excuse myself and go cry in the restroom.



I'm glad to be home, wearing my "turtle fur" hat! Warm and cozy on a bald head. It was a gift from a friend. I looked up the link to share:



http://www.turtlefur.com/b/6565955011



Take good care.

kobrien

I joined this group thinking my chemo would start in April... Due to my slow healing breast wound, I'm not going to start in May.. I know you ladies are all steps ahead of me in this- but hope I can still share here.. I've read EVERY single post and feel like I've gotten to know you wonderful ladies.. So so proud of you all-- because I am the BIGGEST chicken when it comes to doing this.. Part of me was glad I was able to put chemo off for awhile-- but part of me wishes I was on the road to done already...

You all are my heros and are making it easier day by day to accept having to do chemo... As much as I don't freaking want to!

kobrien

Sorry-- typo due to this not so smart phone.. I will be starting in May.. Probably not till the end of the month though

Pattysmiles

Ok risen,

I will see you on the May boards. I was supposed to start in April too, but was pushed to May.



These boards ARE wonderful. So much info, way better than a conversation with the oncologist. Real people, real stories. I appreciate every one of them.



I start tomorrow. Can't say I am excited, but can say I am informed! I'm sure that is a lot better than patients that stick their head in the sand.



See you in May,

Pat

rockermom66

6cats - thank you so much for that, that is some serious perspective. I need to keep that at all times somehow.
I was seriously considering stopping this nonsense after the hell I went through the past few days. 
I posted about it over in the Taxotere, Carboplatin and Herceptin topic.

I absolutely need to be my sons manager when he becomes famous so bring on the bags of crap. 
If I got that boy out of my vagina and lived... I can do this. FOR HIM

OnaWing

BeHereNow - Yeah for you! You did it, air travel, away from home, temporary hair, stress, speech impaired people and all. And didn't it feel good to set all this crap aside and be in that moment when C doesn't own your mind?



Enjoy your week.

goingforward99

kobrien, You stay with us in April! I have 8 rounds every 2 weeks (started April 25) so I will still be going in early August! I would miss you if you switched groups!

 I am thinking about "coming out" on Facebook. I have PM'd some of my friends that don't live near me and I love the outpouring of support. Before I was diagnosed I decided to go back to college part time to finish my BS and I am afraid if it is known on FB that I have cancer it could hurt my chances of getter a better job after I finish my degree. Any opinions on that?

I am 11 days out from my first chemo and finally feeling pretty good. My next one is in 3 days. Right before my birthday and mother's day.

I am having a "Head Shaving Party" tomorrow evening at my dear hairstylist's salon. I really want my husband and sons to be with me when I do it and the 17 year old is going to the Vermont All State Music Festival on Wednesday, he plays trumpet.

raindeer1217

Katie! Hi and happy Monday! Thank you for the reply. Helped tons! Your description of travel with mask gloves wig n fake boobs made me laugh, phew.



Hope your public appearance went well I admire you for forging forward and making a public appearance. Curious if you ended up going wigless?



I'll be watching for future post from you.



With Care



Rain

raindeer1217

Irene hello fellow Vermonter. I say yes go on FB and blast it out. I had a hard time making that decision to come out in FB as I've been in 8 months of negotiotions to sell my business and become a manager of a like much much lager business. Then cancer dx came out of the blue. Thought for sure the sale and the new job would be nix'd. To my great surprise my new boss and purchaser is understanding!



So my point in this... This time is about you at this moment you do what you need to, to get thru it. FB posting help blast out to loved ones quickly. Helps keep the constant phones calls and you having to re-detail the same info over and over.



Lastly, lovelove love the idea of a head shaving party! Fabulous!



Wishing you nothing but the best!

BeHereNow

Irene, I agree with Rain! Coming out on FB has created a larger support group for me, plus some people pm'ed me and have offered the "first-hand experience" support, which has been awesome!



Rain, I haven't gone wigless out of the house, but I think I will. Need to shave my head completely. I'm 90% bald... So a bit funny looking



Cindy, it felt GREAT to not think about BC as my main preoccupation!!! It was a beautiful, sunny day, and I met some awesome people.



Love to all! We can do this together!

goingforward99

Rain, and BeHere, Thanks for the encouragement! I think I will do it in a big way with my head shaving photos! My name is Irene Orlando Goyette if you want to friend me and see!  I think it is going to be very liberating not to be "hiding something"...

BeHere, Shame on those people for saying they hope you MAKE it, how dare they! They clearly have no brain!! OF COURSE you are going to MAKE IT!!!!!!!! 

Love Irene G.

anne11595

Good morning everyone! Going to have blood work done today. Just hope its good this time. But if its not I will just deal with it.

People really just make me laugh when they say the most stupid things. My dh now has come to terms with just tell people that I have bc. We have a business and people have not seen a lot of me! But when some people say stupid stuff I look at them and say I look pretty go for having bc. Most people are understanding. There was a time I really didn't know what to say. Now I just make a joke and everyone laughs. Only if we all could laugh more but its hard some days.

All of you ladys had made me laugh at some point and I Thank you so much!

Virginger

Good Morning.....Ah SLEEP that was NICE~

well  Irene, YOU know how I feel about going out on FB..heck, I went out and they put it on TV...the out pouring of LOVE and SUPPORT will floor YOU...It has me~ And you've seen, I kinda make a game of it...Hat or Outfit of the DAY....I'm only wearing hats for Sun/Weather protection and if kids are gonna be around...don't wanna scare em with a 6ft tall BALL LADY with a DEEP Voice...lol 

Kerri THANK you for your link...those will be PERFECT for the summer and LOVE the name....looks like it will protect but let it breath...never realised how MUCH heat escapes through your head..

just waking up....coffee and water....we had a storm here last night..lost power for a bit and NOW i can't get reception on the TV in the den..argg where's an ENGINEER when I need one....lol

peaceful days and easy SE my Sista Warriors~

6cats

Yippee! I survived the weekend... clipped my head down to stubble (itchy now). Went shopping for a cold weather hat since we are having a cold spell. Bought six pair of long dangly earrings (somehow having cancer gives me the permission to overspend). Went to church in my new hat with a matching shirt and got told how beautiful I was (over, and over, and over... then by text... then by email), yet no one "liked" the photos I posted on Facebook... hmmm...

MinusTwo -- Yes, we really do have six cats -- I like to say we are a blended family!  So... for something totally unrelated to BC (except for the fact that I can't clean litter boxes while on chemo).

• Rascal is 16, belongs to my 25yo son who no longer lives at home and has two cats and a dog himself... Rascal is too old for change and can't move in with him.
• Kitten is a 13yo foundling. She is so inbred that she could be one of the county's ugliest cats. She has partial fur, bald spots, etc... we never named her because we weren't keeping her, but as I was taking her to the humane society, my youngest started crying because "he knew they were going to kill her because she was so ugly"! How could I send her away?
• BabyCat (12yo) belongs to my hubby... Actually she has severe jealousy and when I met him would sit with her claws in my scalp just daring me to move. She hissed at me for the first six months of our relationship! She also snuggles down and takes a nap with him daily.
• Jeffie (8yo) arrived as I was falling in love with my husband and not paying attention to my son. My youngest brought him home from the fall festival while I was making moon-eyes at my honey... I forgot to mention he is our 20 pound blob who jiggles when he runs!
• Snickers (2yo) -- Three years ago we took in my 13yo nephew to live with us. A year later we took him home to say goodbye to his dog who was quite ill. Within a week an adorable kitten showed up at our house. How could we tell him no?
• Patches (4yo) -- Patches has been living with us for the past six months while we've been trying to find him a home. His prior owner asked me to take him and her guinea pig to the humane society. The guinea pig was quite ill, so I asked my hubby what to do. He said, bring them home till we nurse the guinea pig back to health. Well, the guinea pig found a home, but the cat hasn't. We ask all the time, but adult cats are hard to find homes for. And now... he's kind of my cat. The problem is he terrorizes the entire downstairs which means that we sleep with five cats in our bedroom!! Anyone close to central Missouri who wants a cat is welcome to contact me!

How does this relate to Breast Cancer -- Remember, as long as you are on chemo, you can't clean the litter box!!! or in our case, the litter boxes!!

heather214

Glad to see lots of humor on here, because I am in need of it. #3 chemo was fairly bad, seems there is no rhyme or reason to the outcome. I do all the same things, but then the way I feels widely varies. It looks like I only have one more pre-surgery, it came so fast and now I am freaking out some. Surgery scares me! Or should I say THIS surgery scares me, although I want it done yesterday! Lots of nausea this time, and the fatigue is unbelievable(they said I am only borderline anemic right now, gee thanks!). Curious for those post-mastectomy - do you feel like you needed someone to stay with you and for how long? As you know, I am single. My mom wants me to come stay with her, but I have pets, etc. that make it difficult. She does not live too close. Option 2 - having friends stop in to check on me and help out. What do you think? Those drains seem daunting to me, although I am in nursing. I will have 2, as opting for bilateral. How hard are they to manage on your own? Can't believe I am freaking out now, but I think the delay somehow allowed me a good dose of denial?

WELCOME all newbies, it is great to see this board growing and flourishing. CHEMOGATE RULES!

Thought for the day:                                                            Heather