Starting Chemo March 2015

Jackbirdie

Here it is: THE DAILY JACK

Hey! That's my spot!

BBwithBC45

Bekah - I am given Benadryl before each Taxol infusion.

eheinrich

Katy, we are both on CT but you get a whole lot more bags of tricks then I do. I get the pre-meds - anti nausea and steroids then just CT. Because I had a ran last time to the taxotere I will be running slower next time.

I'm in Napa w DH's work. Room isn't ready but I'm tired. Pulled the cancer card at the front desk. They are seeing what they can do.

Jackbirdie

Eileen- good job pulling the card. It's the right time and place to do it.

Take CARE of yourself. Best u can. Thinking of you.

Katy

eheinrich

I'm sporting a scarf today totally should've popped it off before hitting reception for additional sympathy points

Italychick

the concentration camp hair I have on my head seems to be growing, and I still have to shave my legs. What a pain. Have lost half my hair in the basement area, bottom half gone, top half still there. Gee, what a great visual I guess. Just worried because so far nobody at work has figured it out, but if eyebrows and lashes go, it might be more obvious. My wig lady said she will cut bangs for me in my wigs if that happens, helps to camouflage the eyebrows.

I think I'm going to ask them to do my infusions on Wednesday slower. Really nervous about the second half, 4-6. Supposedly it gets worse, but so far I have been doing good, except for screwed up mouth about 4 days post chemo. But I am way slower on my bike, at least for me. My riding buddy says I am doing fine, but I can tell, the legs feel heavier. Of course right now I am a fat ass, so that isn't helping either.

I hope I never have to do this again. It totally sucks. And then I terrorize myself reading about women who recur even if they do chemo. I guess hope for the best, prepare for the worst.

eheinrich

Theresa: I am actually terrified of recurrence. Lots of women on here have had multiple cancers. I know though that we are not a representative sample. Women who don't recur probably don't still post. But still. I wonder how far out we will be when that fear fades

Anyone having problems with cording or lymphodema from surgery? Aside from me? Seeing my surgeon next week. Not a happy girl.

Jackbirdie

Theresa- stop reading the other boards! That's an order. If you need education later, it will be there. And updated for new drugs and therapies.

I feel very positive that the way you treat your body there will be barely noticeable difference in 4-6. I'm not just saying that.

Eileen- you made me SOL ( snort out loud in the PT waiting room) whip that baby off! Hah!

I'm glad we are getting perky again. Been a tough week.

Jackbirdie

Eileen- I'm scare of recurrence too. But I have made myself stop reading, stop googling, and rarely thinking about it. I put those thoughts in the little black box and put it up on the shelf. It's my "worry later" box.

Cancer has stolen enough from us already. Don't let it steal today.

Italychick

no cording or lymphedema that I know of. Supposedly exercise helps stimulate the lymphatic system to work better. But I'm not doing much for my arms, still too scared. That's why I stick with riding my bike, walking or hiking. Working the muscle groups outside of the arm area. I guess I should do a physical therapist appointment, but I am so tired of schedules, appointments, etc.

Supposed to fly to Chicago in August for my nephews birth, but also worried about flying because it can aggravate or cause lymphedema. I had three nodes removed, so I guess it can always be a concern.

SueH58

OK, ladies. Since you've been at this a while, I need to ask a question. You all seem so positive and funny despite your sometimes terrible side effects, and tending to small children. I'm fortunate that, so far, SEs have been minimal, I'm off work, and no small kids to care for. Yet I have counted the days til my final treatment (103). It seems every day is 50 hours long. Although the nightmare started 3 months ago. I should be out doing fun things and counting my lucky stars, but I'm not. I hope I don't have a 103-day long pity party!!! Any words of wisdom?

Italychick

Do something everyday, even if it as small as organizing a drawer or creating a new outfit from your closet or pampering yourself by putting lotion on your body. It makes me feel better to be doing stuff, no matter how small it is. Yesterday I put together a bed frame with my 3 year old grandson, and halfway through I thought "should I be doing this? I have cancer. And I am on chemo, I am supposed to be a semi-invalid." And then I told myself stop being negative, this kind of activity is a part of normal life.

Don't isolate yourself. Be out and about and as social as you can, get out of your head. My grandkids save my life because when I am with them it is all about them, and I have no time to dwell on myself.

Find at least 1 or 2 good friends you can do normal stuff with. I have a friend Cheryl that I ride bikes with, and she has been helping save my normal life for me. Everyday she says ok, what are we up for today? And then I push myself harder to be normal to not disappoint her faith in me. My husband, kids, and grandkids do that for me too. It isn't like I have to be strong for everybody else. It's that I try to make each day that passes as normal as possible, if that makes sense. But if I want to talk about my fears, etc., all of these people are there for me. My son always says "mom, I will talk about as much as you want, help you research, etc., but I will always wait for you to bring things up because today you might not want to dwell on it." Love that boy!

Don't think right now beyond a day or two. Savor every day, and don't look too far down the road. It makes me crazy when I do that. Tomorrow is promised to nobody, today may be all we have, whether we have breast cancer or not. I've known too many people to die suddenly from things like aneurysms to take anything for granted.

Recognize that most people with breast cancer go on to a normal life. It can be disheartening reading online forums, but most of the people who never recur or have problems go away and aren't heard from often here.

Your final treatment may be 103 days away, but there are a finite number of days for treatment, and the in between periods aren't so bad. My wig lady has been a Stage IV for 12 years, and whenever I see her, I think how lucky I am. She has to take chemo medication every day of her life in the form of pills, along with all the other stuff. She is permanently bald, has lost most of her teeth, and has 14 heart stents. But she greets me with a smile, hug and a kiss every time I see her. She humbles me. I guess I am a glass is half full person, because I look at people who have it worse than I do, and then I press on.

It is not easy. Nobody wants this bitch, I certainly never thought I would be here, I had a 5% chance according to family history. Yet here I am, and here we all are. Totally sucks, I know.

And also know there is a big support group of women here you can say anything you want to!

Hugs!

Jackbirdie

Sue-

What Italychick said.

(((Hugs)))

You'll get through. Don't let cancer steal anything more away than it already has.

You are at war.

Lean forward in the foxhole.

Much love,

Katy

SueH58

Italychick rocks. And so do you, Katy. Thanks for your words of wisdom!!!

IndyGal35

Whitney - love the pic. I closed my eyes and stood on the beach for a minute in my mind.

Katy = my cookie HERO!

Sue, Theresa is right. According to your dates, your getting into the harder days after your first chemo. I was terrified of chemo, but the old adage is true: it is hard but doable. Every day is a new adventure, and I never know how I'll feel or what side effects I'll have. You will quickly learn to take life one minute at a time while simultaneously counting the days to your next milestone. Make small goals and celebrate them often on your road to the true goal - cure!

SueH58

So what are typically the hardest days following CMF? I feel like I'm on the upswing.....

Angiel

Well said Italychick! Definitely words to live by!

And Katy, thanks again for sharing your wisdom. And Jack...well, he's just adorable. Love the pictures.

Wpmoon, I love the picture at the beach. You looked radiant.

Bekah, I also get a huge helping of Benadryl in my IV prior to the Taxol.

slothabouttown

Eileen, I have lymphedema around my scar and my ribcage. They call it truncal lymphedema. I see a manual lymphatic drainage specialist weekly and it's gotten so much better. She thinks it's probably temporary and if I can get my scars loosened up it will probably resolve. I also wear a compression sleeve but so far no changes in my arms. I had 26 lymph nodes removed which makes me nervous about LE so I'm trying to do everything I can to prevent it. my pt measures my arms every month to look for changes and so far so good. If you can find someone certified in MLD they can show you how to do it yourself at home. It's easy and really works!

greenae

hi all!

Theresa, I agree! Find something normal to do Everyday...it helps bring "normal" back. And drink, drink, drink and get some exercise... Best advice i was given to beat the SEs.

Eheinrich, i went for a PT eval the orher day. I thought i was doing well. Hmmm, apparently not. I have 3 cords, 2 running to my elbow, and 1 to my wrist. I want to get back to weights and Spin, but was told that overheating my core, and putting weight on my left arm could trigger LE. Are these scare tactics to justify my trekking into the city twice a week for PT? Or do I really have to be afraid that I cannot go back to activities I love? I am a Spin Instructor. Ugh. BC sux! Hopefully PT and I can bust up these cords, and maybe someday my arm will work the way it used to? Sheesh, I thought Sentinel node removal minimized these issues. It feels like 3 guitar strings tuned too high,are under my arm. And I am 9 weeks post op, and dont think they were there 2 weeks ago?

The only good thing about my constant worrying about things like my TE, reconstruction sx or LE, or cording, etc, is it makes me forget to worry about things like being triple negative, and recurrence. I have to do the day -by -day thing, or I will crack up. I definitely would like to find a good shrink/therapist . Chemo keeps me busy and feeling like I am actively attacking this cancer. What happens to my mind and thoughts when I am "done" with treatment and sxs? That's what I am afraid of.

Hugs to all, and hoping we are all plowing thru!

Arlene

Shanann

Hi Ladies! I just want to be part of the group. I'm hope I'm in the right forum. I have read much of your posts, and know that you have started chemo ahead of me. Sharing your positive attitudes, and your experiences is very motivating, so I thank you each and all. I get my port put in on May 14th, and then my first round of chemo on May 20th. I'm not exactly sure which chemo regime I'm getting. I thought it was TAC, but it seems the Oncologist did mention dose dense. I know it's four doses every two weeks, and then it changes into another drug that started with a 't', and the drip will be slower, and that treatment will be either 4 doses every 2 weeks; or half the amount and I would have to go every week stretching the process from 4 months to 5 months. The doctor told me I didn't need to shave my head, and after reading through this thread I'm thinking of going with a short bob, and lots of baseball caps, which I wear anyway. I am hoping to continue to work through it (realizing I may need to take a day off here and there). My treatments are scheduled for Wednesdays so that I will be at my lowest on the weekends and hopefully ready to pick the pace back up for Monday's workload.

Hugs to you all!!

Shan

DavisD

Thanks for the inspiring post Theresa. I've been feeling withdrawn and not wanting to reach out lately so your words rang true for me and I will try to practice them.

Carrie37

Welcome Shan! You will find lots of information and support from this group. We really do have a great group of women here. I just started Taxol and will have that weekly for 11 more weeks. I also get some targeted therapies for my HER2+ status but it looks like you are HER2-- so we probably don't have the same regimen there. Before this I did 4 dense doses of AC over an 8 weeks period. I had my treatments on Thursdays so I took those days off and the Friday after. After a while I was calling in sick on the following Monday and sometimes Tuesday. I stopped working last week. I work in a school so really I just took the last month off before summer. I had my first Taxol on Thursday and I have to say that I feel much better than I did after the AC treatments so far. I wish you the best of luck with your treatments and minimal side effects. Let us know if you have any questions! We are a pretty active group so ask away!

slothabouttown

Sue, I've decided that being afraid and filled with worry is just another side effect. I worry about everything, including. Like Arlene said, how will I feel after treatment, since at least now I can focus on the battle at hand.

I also try to stay busy. I try to be around my friends who understand that I might not be as much fun as I used to be but also understand that it's not okay for me to turn into a hermit and sit at home alone with the worry. I start every day with a dog walk. And I tell myself the exercise is my part in the treatment and I'm responsible for carrying through with that every day to beat this Damn thing.

I'm a worrier and so I think no matter what I do I won't be able to completely put the scary thoughts behind me. So I accept that some worry is normal. Then I call a time out to my brain, do some deep breathing and phone a friend or vacuum the floor or take another walk.

Carrie37

I'm really trying to get myself out of this funk I've been in for a few days now. I'm sad about my hair loss and the support from my DH or actually lack of support. I have a beautiful wig but truthfully, I don't want to wear it all the time. Especially to soccer games on the weekends. I tried a baseball hat with hair but it just doesn't fit right. I think I'll return it. The scarfs are okay but my DH doesn't like them and has told me they make me look like a cancer patient. I even overheard him say the scarves are ugly. I wore a baseball cap with nothing else yesterday and I can't stand all the sympathetic looks. I know people want to ask questions and I'm fine with that. I don't need people feeling sorry for me or treating me like I can't do anything. I don't like to make others uncomfortable but I want to be comfortable too! Why do I have to be so self conscious? Did I mention that I HATE cancer?!? I'm having a moment that I hope passes quickly.

Italychick

Diane, hugs going out to you. Xoxo, wish I were closer!

Carrie, I bought some do rags off Amazon. They make me look like a biker chick lol! But seriously, those with or without a baseball cap would do just fine. And they were super cheap. And screw what anybody else thinks, this process is about you and getting through it. Did you get a wig with a lace cap front? I have a Raquel Welch (which is the lightest) and a wig by Jean Reno. They are both much lighter than most of the other wigs out there and not as hot. I only wear mine to work, or when I am going someplace I want to feel normal. As for the pity, I hate it. But try not to think about it as just pity. My daughters neighbors all came up to me and told me how brave they think I am. I think that is what most people want to say to you. They just don't know how. I hope you start feeling better soon. I am very proud of you for going through this difficult process. Hang in there! Big hugs for you!

Shan welcome to the group nobody wants to belong to. It isn't an easy process, but one day it will be behind us and just a memory! Ask any questions you want. Somebody on here will have an answer.

Sloth, good for you on the walks. They definitely clear out the head.

SueH58

Arlene, I used to be a spinner. I remember going one time and my daughter's math teacher was there and hade a sleave on her arm. Stupid me, I asked if she hurt her arm. She said no, I have lymphadema. She wore her sleeve but went every week. So hang in there.

Theresa, I'm off to have tea with a best friend today. It's a beautiful day here in Wisconsin.

Sue

Jackbirdie

WP- you do look absolutely fabulous in that beach pic. I especially like how you framed it, and there is nothing but beach and sand and sea behind you. I know you probably don't need a reminder of this dark time, but I'd like to see you frame that picture to remind you of your STRENGTH at this time. Even tho you don wanna go Monday. I will be thinking of you.

Jackbirdie

yes Carrie. F cancer. Even Jack thinks so. See?

I feel so bad you are in a funk. I hope that there is something in this weekend you can enjoy to lift your spirits a bit. Try to not interpret pity, or imagine what people are thinking. It doesn't matter. Take help where it is helpful, and ignore everything else. Thinking of you. I've been down the rabbit hole myself, but I am feeling much better. It comes and goes.. Next time it comes, hang on tight to your sisters here. This is the place, ok? Thinking of you, holding your hand. In solidarity, and with love.

Jackbirdie

Sue- so happy your getting out for tea with your bestie! Good for you!

And you are rewarded with a beautiful day too. Please report back. I will love to hear how the world looked to you today. Wishing you the best day ever.

Katy

Jackbirdie

Sloth- I like the way you think! Accepting who you are and working within your native personality traits is a very good point. You can't be someone you are not. You can practice at putting the worry away, but calling a friend and taking a walk will hopefully get you to the same place. Plus the exercise is so good to help with SEs.

Btw, sorry everyone about hogging up all this space with single messages. Between my iPad fussing and my chemo brain, I'm having trouble with the multi messages.