Starting Chemo March 2015

Jackbirdie

Lee- that is a beautiful girl in that photo. And guess what? I recognize her. She is still there.

You've had an XL shit sandwich and I know you've had a lot of pain lately. Pain makes you crazy. And questioning the recon. Doubts carve away at your confidence. That's all very emotional.

You post 199 times a day if you want. We are always here for you. Always. Good times are just around the corner.

Big hugs and mojo coming your way.

Katy

ksusan

Lee, I've certainly cried more than normal at various times in this long process. I think some of it is from fatigue.

IndyGal35

Thanks for the support, Guys. Maybe fatigue IS part of it. I've had between 5-7 appts/week for the past 3 weeks, and it'll be even more once rads start. Trying to maintain 40 hours at work on top of all that has led to some long nights on the laptop too. Katy is right too. I'm sure the pain isn't helping.

Teresa, I had to be fully inflated before rads could begin, and they pushed me really hard. Way too hard, actually. PT thinks there's scar tissue under the right TE causing some pain, and the cording was pretty bad. Now that planning and rad scans are done, I'd have to delay rads even further to get them removed or even deflated. At that point, the efficacy of radiation would decrease. I'll hang in there another few weeks, but I'll certainly be calling the PS demanding to get them out if I don't have significant relief by the end of September. At least I have a plan. Either way, the pain won't last forever, so that makes me feel better too

Italychick

I think Arlene said that they released some of her cords for her. If that is what is going on, maybe they can do the same for you. How long do you have to keep the TEs?

shaz101

Lee I totally understand! Cry away. Hugs to you xxx

shaz101

Thanks katy, that is very comforting to know! And that is exactly what I'm like. Getting up off of the toilet is the worst as I don't have anything to grab to help me up. I need to get some lemons, I forgot when I was at the shops doh 😨

Meme117

Lee BIG hugs to you! I love the photo where did you travel to? I keep telling myself one step at a time and I know I'll get back to my "norm" next year. Where do you and hubby want to go next?

Allison you sound like your ready - thinking of you, glad you found your doctor.

PT said no lymphedema just a bit of post surgery swelling still but severe cording. I'll have pt 2x/wk till gone, argh another appointment. Tomorrow I start back with herceptin, yuck. On another note - my little baby boy started high school today which brought tears to my eyes, I feel like I just took him to kindergarten, I now get up at 6 amwith him it was still dark this morning😠

IndyGal35

PT was able to release a lot of the worst cording. They're amazing and really helped my range of motion!

If I hold out for the TE/implant exchange, I'm stuck with them until March. I honestly don't think I can handle 6 more months of this though. My poor muscle and skin are stretched so much that the skin is actually peeling

That's why I figured I'd wait another 3 weeks or so and see if I'm getting any better. If not, I'm hoping that I can get them out within a month after rads if my skin is in good shape. I'm 100% ok with that decision if need be. I'd rather "waste" three months of pain than endure six more! That's just basic economics. Ha!

wpmoon

I'm tired of cancer. My reading is tomorrow night, and I suddenly don't want to go. I want nothing to do with cancer at the moment.

Lee - I hope you find relief soon! I'm glad you have a plan for the upcoming future and have come to terms with your decision.

IndyGal35

Maryellen, we flew into Denver on a Thursday night and drove to Casper, WY. The next morning, we got up early, drove all the way out to Old Faithful and came back to stay a night in Gillette, WY. We got up again, drove to Mt. Rushmore/Crazy Horse, then headed back to Denver. We rested for a day and sampled tons of beers, then we drove to Estes Park the next day for lunchbefore flying home. We love CO. We've considered moving there many times.

I'd love to do a road trip from San Fran to Seattle over a long weekend. I think that France is next on our international travel list. Paris, Lourdes, and Normandy are big in the list

Jackbirdie

Whitney- you've been working out hard this week. I think for you tonight a bubble bath and a good night's sleep. I think you'll feel more like doing the reading tomorrow.

Sometimes nerves masquerade as other emotions. Be kind to yourself.

Lee- if you do SFO to Seattle, I am conveniently on the way. Standing invite for a pit stop or overnight here in Oregon.

ninjamary

Allison - Good luck and glad you got a top notch surgeon!

KBeee

Allison, hope the surgery goes well.

Indy gal, it sounds like they filled the TEs way too fast. I'm sorry you are in so much pain.

Whitney, I hope the reading goes well.

Msmath

Indygal: I too felt a lot of the same emotions about the TE's. I ended up having my PS take out some of the saline and it was so much better. I told her just to take them out but she suggested just making them smaller. I have had mine in since January 30th and I will finally have my exchange on September 18th. I am counting down the days. I do still have some pain every once in a while but nothing like before.

eheinrich

Good luck Whitney - I'm so proud of you

Allison Hang in there. Be kind to your body, rest, keep up on the pain meds.

I would currently like to shove this TE up someone's ass. It hurts so much. I have my check up today - hopefully one drain will come out. The other is still juicy.

Jackbirdie

Eileen- I am just cringing for you... So sorry! So glad you only had one! How's Righty?Ok? Or does that hurt too? Ugh. I'm so ignorant of the whole recon process.

Allison- you are much on my mind. Hope you can feel us around you.

Whitney- good luck tonight! I wish I could dust off my magic carpet and sneak into the back and listen.

eheinrich

The right one is ok. It's perky that's for sure....

pboi

Eileen...hope you're feeling better soon.

Whitney...good luck tonight!

Having a hard time moving on post-treatment. Feeling lost. I initially thought after treatment was over I'd be a bit tired and recover after a couple months. Am realizing my body/mind will never be the same. Chemo/hormonals have me in pain and I have such fears about this coming back...need to learn how to cope with a new normal. But right now...feel like I'm sliding down into the rabbit hole.

PB

SueH58

pboi - Some days are like that, but I've had a couple of good days where I feel good and feel like I came out of the cave and see light in the distance. Hang in there, and you will have good days again too. Your cancer was caught early and with all your treatments, your chances of recurrence are small.

Someone help me understand the TE and exchange process. When my mom had recon 30 years ago, they just put in the implant after the surgery healed. I don't understand why this TE is "installed" and why an exchange is done. Sorry, don't want to burden anyone with trying to explain but I am interested in understanding.

Whitney - you go girl at your reading. You will do great and feel proud!

Jackbirdie

PB- reach out your hand. I will grab you. You will not go down the rabbit hole without a fight from me. You have weathered a great storm and your spirit is battle-weary. But your great love for your children AND YOURSELF will steady you and buoy you.

Big time mojo coming your way.

Ckonicki

I have had two doses of AC and I feel like quitting. I have never felt so bad. I feel like I have been in bed for six weeks and my life is fading and I can't get a grip. I have been feeling a bit better today after taking more medications. I just feel so lost sometimes and so overwhelmed at what is still in my future. I love reading the inspirational messages on here and I really wish everyone the best. I completed 12 Taxol with minimal side effects. This AC is horrible though. I feel very depressed and overwhelmed and sad and hopeless. I will see the cancer psych doctor in a week. That always helps. I would appreciate any advice on battling the depression. Thank you and hugs and love to everyone!

Jackbirdie

CK- I'm so sorry. AC is very tough. You are hallway? 4 total? Please know we are there with you. You are not alone. Please avail yourself of any and all SE meds at your disposal.

I'm glad you have a counseling session set up. I feel certain it will help. We all need brand new, untried coping mechanisms and new ways to view our own lives and the way we interact with our friends and family.

I don't think any of us here in this group didn't at one time or another want to, or even seriously consider discontinuing chemo. Please note I did not use the word quit. It is a private matter between you and you. Only you can judge the risks vs the rewards.

I am just so sorry you feel so down but so glad you reached out. I wish I could give you a hug and have a cup of tea and find something to smile about. In the meantime, listen the best you can to your body and give it what it needs. Whether that be meds, rest, or trying to walk to the mailbox and back. Only you know. But all of us care.

SpecialK

sueh - most likely at the time your mom had recon they placed the implant between the chest wall and the skin, as that was the process then. Expander to implant recon now involves putting the expander under the pectoral muscle and expanding that area to create a pocket for the implant to fit into. This process takes some time as the muscle is usually gently stretched, then the expander is removed and the implant placed during the exchange surgery.

shaz101

eileen I hope that a drain is removed today and that the pain starts to settle quickly now.

Pb I understand the rabbit hole I think i have a whole burrow in my house. But luckily for every hole I fall down there are many exits to climb out of now! I thought after treatment is would just be recovery, not new pain! But we have done the worst this is just another bump in the road. Enjoy the good days/hours. Hugs to you.

Goouck with your reading Whitney.

CK, I wish you the best and even strength. I hope you get some inspiration from all of those that have gotten through chemo. I nearly quit, I spoke to my Dr about it, but I clawed my way through every day. Only you know how much your body can do. Hang in there, thinking of you xxx

I spent the day on the lounge yesterday. I just couldn't move. This morning I had an Epson salt bath and I'm going to try and potter around all day to see if moving constantly helps my joints.

Thinking of you all. I think I'm coming to the realisation that my old life has gone. But I now have a chance to recreate my new life and that will be exciting. I can decide what I want to do or not do. The only thing I really do have to do is go back to work. And that scares me. I'm not sure I want to do it anymore. It was a huge responsibility and stressful. But I need the money.

Carrie37

I got all of my drains out today!!! 🎉🎊🎉🎊

Ckonicki, you are right. AC sucks!!! It is all kind of a blur to me now if that makes any sense. And Katy is most definitely right when she says we all considered stopping chemo. I guess what I am saying is that it will soon be in your past and you will survive. We are here for you when you need to vent.

Lee, cry away! I see pictures of my "old" self sometimes and get so sad. Sometimes I think I feel sad when I think about my prior "ignorance." You know, the life where cancer wasn't even in my thoughts. I think about the things I used to worry about and I feel so guilty about sweating the small stuff. I hope that soon your mood improves. The pain and fatigue are enough to drive us crazy! And, I am a little teary writing all this!!

I forgot to tell you all about my visitor at the hospital. A friend of a friend who has nearly the same diagnosis and all the same doctors as me. She is a few months ahead of me in treatment so she has been wonderful at preparing me for things. She and I both cried. That unspoken connection. I think her tears were because she knows how bad it sucks and I cried because I knew it probably brought back so many emotions for her to see me. But it was so helpful at the same time. She bought me a little pill box for my purse. So thoughtful!!

Anyway, I hope everyone is doing well! Thinking of you all, as always!

ksusan

Good news, Carrie!

eheinrich

I'm so tired. So tired of my body hurting. I was back at the PS today. My expander side is bright red and extraordinarily painful. They put me on IV antibiotics & rushed a sample of my odd looking drain fluid for testing. tomorrow I will be back for at min more antibiotics or at max removal of everything. I just can't do any of this any

IndyGal35

Doing a little better today. Got Herceptin #9. Big D tonight, but I'm half done now! Going for my dry run with rads tomorrow. One step at a time!

Glad you got your drains out, Carrie, and I hope Eileen gets her drain out soon too. Those things are the worst. They're sore and freaking disgusting. I had mine a little over 3 weeks, and they finally pulled them when I was at 26 mL/side. Blech!

Whitney, hope your reading went well!

Sue, the TE's go behind the muscle now so that any remaining breast tissue stays in front of the muscle instead of behind a TE. It makes, heaven forbid, a recurrence easier to feel and detect.

Since radiation has a tendency to cause tightening, thickening, and a higher risk of infection in the skin, most women facing rads get tissue expanders placed at the time of surgery. (Usually, the TE are filled a little during surgery so you can see little mounds.) The PS generally inflates them a little fuller than your desired final size to allow for any shrinkage, thickening, etc. They like you to be fully inflated within 6 weeks so that rads can begin within 8 weeks of surgery.

Yes, there have been many times I just wanted to forego these treatments. My DH and hope for the future keep me going. Each step is hard in its own way.

Speaking of The Big D, that's my friend's ex's new nickname. Ha! His first initial is D, but the nickname fits him well.

Carrie37

Eileen, I'm so sorry to hear all this is happening to you. I'm thinking ofyou and praying this goes away quickly. We are here for you.

IndyGal35

Oh, no, Eileen!

Hope you can sleep well tonight and that the pain is under control. Prayers that the fluid starts to clear overnight! You've been through enough. Why does everything always have to be so freaking hard? :