Starting Chemo March 2015

Jackbirdie

Welcome Shan! You are very welcome here. Sorry you need to be, though.

As others have said, we are very active, so there's always someone around to ask a question of, or rant, or just whine. All ok here.

Looking forward to getting to know you.

Arlene- your post resonated with me as I have read that many women do feel a bit lost and like their safety net is gone once they aren't being monitored weekly any more. I suppose I will feel that way. I feel quite well-taken care of right now, and for all my talk of dealing with the worry, it's something I always have to work on.

Not having your spinning must be very hard for you. I think as Sloth has said before, LE can occur any time, even years after surgery, and though the SLNB procedure is very helpful in reducing chances, there is no guarantee. I think talking to someone about how you could treat yourself in MLD would be great, if it isn't available to you locally.

I am working with a PT who doesn't know MLD, but she is trained in mastectomy scar tissue management. It hurts, but it is helping. Very very slowly. It's so frustrating to still have pain more than four months after surgery, but that's my serving of the shit sandwich.

I think it is a very good idea to seek out a therapist or shrink who can help with the issues you mentioned. I believe it shows strength to open yourself up this way, and to be willing to "do the work" as they say. I often compare going for therapy like going to the hairdresser. There is maintenance that needs to be done which never stops. And it usually makes you feel better.

Shanann

Thank you all! Carrie- It's very fascinating to me that each woman's case is so different, but can have so many common features. I am HER-2-, but I got a whopping 9 on the Nottingham scale, and a grade 3. Seems there are some aggressive and fast growing cells at work in my body. It's all so new to me. I don't normally even take Tylenol, and now I'm going to be pumped with toxic chemicals that burn my skin if I don't get a port. URGH I can't load up on anti oxidants during chemo, because I might be protecting potential cancer cells. It's so funny (not at all!). I went to the doctor for a wellness exam, because I am 51. She found a lump, and sent me to have a mammogram, which was part of the check up anyway. The next thing I know-- I'm being biopsied. I remember the doctor telling me that he was going to make three passes, and it would not hurt. I also remember telling him, "Thank God you are done with that third pass, because it's beginning to hurt a bit." That's when he said, "Oh, wait! I have to make one more pass!" OUCH! It seems they play the pain down; however, it was tolerable. I am grateful that my tumor was caught early (Stage 1A, and no node involvement), but given the aggressive and fast growing features I was almost certain I was going to score high on the oncotype DX test.... and, I did. My husband of 23 years left me in '05 when I was in the last few years of child bearing. I always wanted a large family, and never gave up hope of having another child, so for me, it was a devastating blow. At that time I decided not to date though, and gave all my time to my kids (home schooling them) until they were grown and on their own. And, now-- I'm going to be thrown/forced into menopause a few years early, and after meeting a wonderful man to whom I recently got engaged. . What's the alternative, right?

Thanks for letting me vent. Thank you all for being so welcoming.

SHan

DavisD

Welcome Shan. I'm in Virginia too, the northern part. You will find this to be the best group of women ever. Sorry you found yourself in this situation after coming so far. Hoping your fiancé is supportive as you face this challenge.

I'm doing better today. Made myself walk about two miles. Made plans to have lunch with an old friend tomorrow and spend the weekend with another next week. Feels good to have some plans. I was really sinking down the rabbithole, not even wanting to get out of bed. Must go back to work this week so time to put on the big girl panties!

Happy Saturday to you all!

Jackbirdie

Shan- congrats on the engagement. Your story is sad but you acted heroically for your kids. Now. Don't try to be a hero this time ok? We are here.

Hugs

Diane- most happy to read your post. Glad you're climbing out head (and heart) first, have some plans to look forward to and BRAVO on the 2 mile walk! I think we should add a trophy charm to that magic bracelet!

Big hugs as always

And to all a great Saturday!

Katy

Carrie37

Thanks Theresa and Katy, I'm going to be okay and your kind words and advice help. I do have a lace front wig and irbid pretty comfortable. I just don't like worrying about it with the wind. A hat suits me better I think. Unless I am at work. Theresa, not to sound silly but what is a do rag? lol

Carrie37

Katy, I really love Jack! He is here for all of us isn't he? 😊 I love his charm/dog tag...was it a gift

Shanann

What part of Northern Va,? I actually live in Front Royal, so I'm somewhat familiar with Northern VA. (Fairfax, Arlington, Centerville, Dale City, Reston, etc...) If you walked 2 miles, you're doing great. I work in a shipping department, and when the busy season hits I easily walk 10 miles a day (I used a pedometer), and I lift heavy books and boxes. I work for Seton Home Study School. Don't know if you've heard of it or not, but it's the largest home school in the world with over 12,000 enrolled students. I love my job. My fiance is sticking by my side through all this. He's amazing, and I am blessed. Yes, putting on MY big girl panties as well.

And, Katy- thank you so much!! I noticed how encouraging and gentle you are in all your posts. You also have a great sense of humor. I think humor is the answer to keeping us sane, so it's very nice to read. Does the port hurt much, and for how long? I had a drip bag on my breast after my lumpectomy, and I hated that worse than the surgery. I was so relieved when they took it out. I didn't have swelling at all, so I guess it served its purpose. I hope I am getting names right, because I'm new to the site, and not everyone goes by their real name. I'm trying to pick up on it, but I'm a little slow.

Italychick

Carrie, below is a picture of a do rag. My dad always wore them the entire time I was growing up, so it kind of connects me to him. They are really lightweight and simple to put on. Just on the head, tie the back, and go. I think it looks a little more normal (on me) than a scarf. Bekah, Diane, and Sharon totally rock the scarves. I got a bunch in different colors and patterns. Some are solid.

Shanann, my port only hurt for about a day. They have to really yank around on your muscles to get it in.

Italychick

on Amazon they are called skull caps or biker rags. Super cheap!

Jackbirdie

Carrie- He definitely is here for all of us!

The dog tag was an anonymous gift.

He's not in training anymore but I haven't been able to go to a meeting for the "presentation" of his official vest

Shanann

You wear it well!! I want a do rag. I think I'll get one in pink. I like to wear caps, but the do rag looks much more comfortable.

Jackbirdie

Shan- thank you for the kind words. I was very sore from the port for a couple of weeks, and I felt (and others also reported) a kind of troubling pressure on the windpipe. But all normal and though it took time, my port is now my friend. Makes weekly blood draws and infusions Sooooooo much easier. I didn't have good veins to start with!

And for everyone..... The following link is an article published here at bco....proving what Theresa has been telling us. But now there's a published study to prove it. Though all I needed was Theresa and her famous bike rides and manageable SEs to prove it to me. But it's encouraging me to get out there even more.

wwwBreastcancer.org/research-news/exercise-during-chemo-reduces-side-effects

Tried to make the link hot. But it's easy to find on the home page because it's "news

TerryMarie

Yesterday was my 5th and I have one more to go, all red faced and exhausted over here. My sleeping is non-existant. I explained to the doc the incredible bone and joint pain I experienced with the taxotere during the last one and said I cannot go thru that again. Now I have more steroids and some oxy to help me thru, she said, as did a nurse, that its after the steroids are done is when the pain kicks in. I have 3 more days of them now but at half the dose. I live in fear of that pain returning. I feel good knowing its almost over except for herceptin. Of course they didnt have blood return yesterday from the picc line so I had to go get xrayed , only to find out that everything was fine. Long day yesterday, I was at the hospital over 5.5 hrs. I was a bit emotional due to no sleeping and I find that compassionate nurses that tell me there is light at the end of the tunnel and all will be well, make me break down. I appreciate the positivity but I'm almost better off with someone gruff and matter of fact. That sounds horrible because my nurse is a survivor and just ret'd to work after having BC herself. But i started to ball and then so did my daughter. I felt like an idiot. So now I have oxys, senekot, stool softeners, you name it. I know im preaching to the choir and I only hope I'm making sense. Gawd im beat tired.

Italychick

My do rags came in like packages of six, various colors.

Katy, still riding. 34 miles today. But the legs are slower, and I am fatter, so my speed is a bit slower.

Hope I can still ride after chemo 4. But Cheryl, my riding buddy, said she will go as slow as I have to.

Fat, fat, fat. I'm so sick of it. Weight gain so far has been 5-6 pounds. In 9 weeks. Argh! And my 3-4 times a week bike rides burn about 1,000 calories per ride. I gotta change something. This weight gain is getting ridiculous. It would probably be double that without riding.

But I do love the cookies...probably my downfall.

Jackbirdie

TerryMarie- so hoping the additional steroids and oxy helps. I feel for you. The steroids are probably the culprit of the lack of sleep, and the lack of sleep in turn makes you more emotional. It's strange, but when people are nice to me is when I always start to cry.

But just so you know, you ARE making sense. Sending a wam gentle hug your way tonight.

Theresa- awesome ride today! Give Cheryl a hug for me. Please try to not worry so much about your weight right now. Chemo plays with fluid retention. It will all probably all come falling off at once one day soon.

PLUS! Your body is having to work much harder. You may be building muscle in spite of it all. Which you know very well, weighs more than fat. So know more talk of fat fat fat please missy

Jenwith4kids

Hi Girls, I hope it's okay that I'm popping in. I was in the Starting Chemo in March, 2014 group. I had DD AC and then weekly Taxol - 3/19/14 through 8/4/14. Five very long months. I gained 15 lbs - I've lost most of them (and you will too!). I was stage III so I had a BMX, chemo and radiation and I'm now on Femara. I just had my exchange surgery - what a relief to be rid of those expanders. Even with the discomfort/pain of surgery I feel 100 times better than I did with those bricks on my chest!

Anyway, I thought I'd pop in to see if anyone needed a glimpse of the future. This community has been an amazing support which you all probably already know. Most everything I read here was true and it was so calming to know that I wasn't the only one with red cheeks, sleepless nights, constipation, crankiness, breaking down when people are nice, hating the steroids, loving the ativan, feeling happy but scared when chemo was over, missing the safety net of weekly doctor visits.... ahhhh...... some days still suck, but they are fewer and further between.

Right after my exchange surgery I realized that I won't go through life uncomfortable every day...squishy's are much nicer than TEs!

Good luck with the rest of your treatments.... feel free to reach out to me!!

Jen

SueH58

I had a wonderful day with my bestie. We had tea and a snack in the shade of an italian restaurant's patio and talked for hours. Totally revitalizing.

I'm peacefully tired tonight, and ready to forge forward.

BTW, this may be a coincidence, but I stopped at the grocery store and my bill was $103 exactly. I've now got day 103 behind me, and have decided to stop counting.

Thanks to you all for your support and encouragement.

P.S. I have another T-shirt coming for my next session. Pics forthcoming.

rleepac

Jen, thanks for popping in. Your post was exactly what I needed to read today! I still have BMX with TEs and exchange ahead of me but it's nice to know there is a 'soft' landing somewhere in the future.

I still get little bits of nausea - I think from the Perjeta but it's managed with only one anti-nausea med (instead of needing 3). I did have diarrhea yesterday but stopped it with Imodium. Yesterday and today I slept a lot. Did get some bone aches/joint pain that I had to take a pain pill for but slept it off and feel ok now.

13-yr-old DD came home from visiting my sister (for 10 days) in Tx today and I'm soooo happy to have my girl home!!!! She's definitely brightened my day and started to bring me out of my funk.

DH is out of town for the weekend at a church camp. It's a good thing too because as much as I love him...I was ready to kill him for 'smothering and mothering' me so much.

Feeling good right now so I'll make a grocery run but I'm preparing for SEs to hit tomorrow (day 3). Hopefully not but I want to be ready.

Bekah

Jackbirdie

Sue- I am so happy you had a transforming day....your description of your tea in the shade of a beautiful building was hopeful imagery for me. I hope you continue to climb upwards from here, and though we all know there will be future down days, they don't last. You did it! Wishing you restful sleep tonight and that when you wake up tomorrow morning the first thought that you are aware of IS. NOT. CANCER.

BTW, I don't think the 103 thing is coincidence. I'm glad you took it as a sign to stop counting. A big, proud, hug from your chemo sister Katy.

Jen- how very thoughtful and generous for you to come "Back To The Future". It is indeed comforting for me to hear that your experiences were so similar to ours, and that you are doing so well. It shines a light on my future and I can see better days ahead. Reading your comments I see that you took the time to read many of our posts. Taking the time to do that and extend your hand is extraordinary. Thank you.

rleepac

My girl is home!

Jackbirdie

Bekah- so glad your daughter is home! Ten days must have seemed an eternity! And you two can have some girl time while hubs is gone.

I hope it is not premature to say or jinxing you to say that it sounds like things are a bit better SE wise so far. Glad you got some needed rest and you are so far able to manage the nausea with so much less. I always worry about you with that, and it gives me peace tonight to think you are in a better place.

Beautiful, happy photo! I "like"

rleepac

I do t really like all the crows feet in the photo but I was so happy to see her I just could help smiling that much

Jenwith4kids

You know, as sucky as chemo is, I will say - and this is total hindsight - it made me slow down. It made me appreciate my friends and family more, I think I'm nicer now than I used to be. I take better care of myself, I spend more time with my kids, I appreciate them more, I give them more space to be themselves, I've relaxed my expectations in more ways than one. I'm not so sure I recognized those things as it was happening and I'm not sure what I would have done with that statement if someone said it to me throughout ...but there it is. Wishing you a restful night and a happy Sunday

Carrie37

Thanks for the pictures Theresa--that helps. Terry, I'm sorry you are having a rough time and I pray it gets better quickly. I hope you get some rest. Jen, thanks for stopping by to give some of us a glimpse into the future. Bekah, you look so happy with your DD, great pic! Me...well I have been up off and on all night in the bathroom. Miserable right now and hoping the Immodium helps. DH thinks I am doing great because I look better after this round. I'm not feeling so hot. We went by some friend's tonight /last night and I feel like I pushed it. I was hesitant to go because DH is so social and sometimes doesn't want to leave parties when I do. He told me to "suck it up" and hang with friends. I did my best but could hardly stay awake. If I could have laid on their floor I would have. I could not get DH to hear/understand my pleas to leave. Finally my friends could see my pain and made DH leave. He had been drinking so I drove home in tears. I know that is dramatic but I am so frustrated. I'll get over it but i am so annoyed. I think I'll be spending time on Monday trying to find a therapist so I can work some things out in my head.

Hugs to you all and hoping for a happy Sunday.

DavisD

Shan-You're just down the road from me. I live in Clarke County about 15 min from Front Royal. We will have to meet up some time! Very cool.

TerryMarie-If you're on the Taxotere, I had the exact same symptoms. thought I'd never sleep all night and diarrhea was all day and night. Once I got on the Imodium, oxy, and Ativan I was a little better. The pain didn't get better until he put me on 20mg of prednisone. As much as I hate the lack of sleep, the bone pain was worse. This time they reduced the taxotere by 20% and SE have been much less. Hang in there lady, it will pass. Don't be afraid to use the meds.

Carrie-I don't have anything nice to say about how your DH treated you and I'd like to shake him silly...you DESERVE to be the priority and cared for. Nothing wrong with your head but may be good to have someone to talk things out with. So sorry he's being a dick.

Bekah-so happy you have your girl back. I felt the same when my daughter would go away. Just something special between mothers and daughters...still is even though she's grown up and on her own. We have a connection that will never change and it is so powerful.

Theresa-I understand the discouragement you feel when your exercising and eating less but continuing to gain. That's been my past year...30 lbs! and I've always been thin so it's a real shock. I've lost about 8 lbs prechemo but I'm not as fit as I'd like. Did almost 10,000 steps on my fitbit yesterday even though my legs felt like lead. Good advise about the do rags. I went a little crazy and have about 30 from all different vendors, mostly through Amazon. You just look like a cool biker chick! Stay with the biking, you're our exercise inspiration.

Katy-Just wanted to say hi and send you a warm gentle hug!

I'll be sending the traveling bracelet to Maryellen on Monday!:

 

molly1976

Jen - thanks for popping in and sharing your experience. Too often the people who stick around and keep posting here after initial treatment are the ones with lingering problems and it is nice to get reinforcement that there is a light at the end of the tunnel.

Jenwith4kids

Carrie, go find a therapist or a social worker or even a support group ! Sometimes we need to talk to someone about the people around us!!

I was very blessed that my husband was awesome through this whole nightmare. He told everyone around us that cancer is a team sport - that was huge for him, someone who is very independent and hates to ask for help,

maybe that analogy will help your husband understand. Maybe he needs to have some times when he goes to hang with friends alone. Telling yout to suck it up...not cool. But maybe he is underestimating the impact on you and on him.

I'd love to be of more help for you.

Jackbirdie

Carrie- I'm so sorry. Agree that was not cool., and that there's nothing wrong with your head but it might help to talk to a therapist about how to deal with your H when he's being a dick. He earned a junk punch from me for the suck it up comment and a pimp slap for not reading the tea leaves once you got there. Alcohol will do that, I've been guilty myself. And yes, maybe he's not recognizing how this is impacting him. Still not cool. It sounds like this has been a bit of a problem pre-cancer, and the pressure of this situation could only make it worse. He needs to be pulled up short. The image of MY friend driving home in tears really pissed me off. BTW, make sure to really try to hydrate today after losing fluids with D. Can make your SEs worse if you can't stay hydrated. If the D continues, you might call infusion and ask if you can come get some.

Jen- love the team sport reference. Your husband sounds a gem.

TerryMarie- I sure hope today is a better day.

Diane- hi back sweetie. Hugs

Love to all today, hoping for rest, minimal SEs, and a speck of joy here or there, wherever you can dig some up.

Katy

Trvler

Sue: When I was first diagnosed, my husband said something like it is good you are going through this in the summer so you won't be stuck inside and get all down. I thought he was nuts. That's ALL I wanted to do…be inside. I didn't want to go anywhere, except work out. But this weekend I went out because we had some kids things we had to go to. And my husband took me out to dinner because I have learned I feel my best during the few days before the next chemo. Yesterday, I felt pretty normal. And I enjoyed doing things. I would encourage you to force yourself to get out and do stuff.

Great post, Theresa!

Welcome, Shanann. You are more than welcome in our group but you might also find a group starting in May so you are at the same point as others, or thereabouts. That helped me a lot. It sounds like you are going to be the same regiment or a variation as me. You can ask for weekly Taxol. I know you want to get it over with but sometimes people have an easier time with side effects on the weekly dose vs. biweekly.

Carrie: I hate wearing my wig, too, but when I am going somewhere, I just suck it up. The ONLY place I wear anything else is a hat at Jazzercise where a wig isn't practical. Then I don't have to deal with all of that emotional stuff, too. Just the physical discomfort.

Bekah: So glad your daughter is home!

Carrie: I can hear your frustration about your husband. I have been frustrated with mine lately. ANYTHING the he perceives as criticism is met with a full on attack of me and I was so mad at him Thursday. I am not going to suggest ways to fix it. I had to vent to a friend and my sister and I felt better after. I hope you feel better after venting, too.

Jen: Thanks for telling us there is light. It really helps.

Carrie37

Yep, alcohol definitely played a role in the hubs behavior last night. Not cool. Thanks for all the support. Before the big C I did most everything around the house and he has since stepped up. So he he not normally a total dick. I think he is happy to start having me feel better. He needs to take care of himself too but he won't admit that. He says he is fine but I can't imagine there isn't some sort of shit going on with him. I am exhausted today and I didn't even drink! Lol. Thanks for the reminder about watching for the dehydration today. Happy Sunday to all...I hope it is beautiful wherever you are and you all can enjoy some fresh air!