Starting Chemo March 2015

KBeee

I agree that you look great!

pboi

Theresa...you look great!!!

PB

shaz101

very proud of you Theresa I'm hoping to have enough growth so I can wear my hair to my step daughters wedding on the 26th of December.

I still have today and Mondays radiation to go. The machine broke down so I missed one day. Otherwise katy you would have been on the mark.

Hiho Hiho it's off to radio I go ....

IndyGal35

Hey, Gals. I'm still lurking, but I've been on the struggle bus lately, so I haven't posted in a while. (You know something is wrong when my virtual mouth stops running!)

My PS had to inflate my right side so fast to prepare for radiation that I've been in lots of pain for several weeks. (To give you an idea, within 3 weeks post-bmx/snlb, I had more than a soda can of fluid in each expander.) At 4 weeks, I finally begged him to slow down, and, after last week's fill at 5 weeks post-surg, I finally said NO MORE. I'm at about 450 mL on the right side now. (My goal was 550 since my former size was about 880.) My rads CT is next Wednesday.

I am heading to PT twice a week now for painful cording. The MO's NP had me get a Doppler ultrasound up and down my arm last week, because we thought there were clots in there. Nope! Just cording from armpit to hand and, perhaps, stage 0 lymphedema. I'm getting my sleeve and gauntlet soon.

So, the setbacks are discouraging, but I'm trying my best not to push too hard. I miss my travels, and I miss being pain free more than anything. On the bright side, my hair is coming back in with a lot of red like before. That makes me happy. It's short, but I see potential curls too

Italychick

just met with oncologist, so weird how we are all told different things. She is going to do a PET scan by the end of the year, and then no more of those unless I have symptoms. She said at this point breast surgeon takes over the scans, so probably a post surgery MRI and then set up routine follow on scans. She said I should be considering a mastectomy, and I told her well, either way, I am going to be scanned every 3-6 months because I'm er negative, so i think I am going to do the scans and wait on a mastectomy decision because I will be scanned either way, that part won't change. So basically it comes down to whether they see any residual activity in my MRI or PeT scan this year. The mastectomy is recommended as standard of care since I couldn't do radiation. But as I am finding out, radiation is no guarantee of anything.

Unless the breast surgeon slaps me upside the head and says I'm an idiot for not doing a mastectomy. But I will deal with that when it comes. If she does, then I guess I have to get a Barbie boob.

Jackbirdie

Lee- good to see you. I was worried. It's a long and winding road...🎶🎶🎶. Hope your pain level improves soon.

T- yeah.... Every doc is different. Every case is different. Hard to know what to do. In retrospect, as much as I know I would have been worried and fretting over regular diagnostics of myriad kinds, I didn't account for what it would feel like .... To do nothing..... Instead of NED, NLFD.

(Not looking for disease)

Screwed either way.

Italychick

Lee, glad to see you back, so sorry about all your troubles. Fingers crossed lymph edema is minimal or non existent.

Katy, with negative receptors, scans are in my future no matter what I do. So I really have no choice.

slothabouttown

Indy good to hear from you, sorry about the LE and the sleeve, I hate it when another of us joins that club.

I can't imagine enduring the fills. I had no reconstruction and dealt with the "iron bra" pain. The thought of getting pumped full of fluid just sends me over the edge!

Theresa you look like a bad ass with that hair style. I think you should cinnamon it up!!

eheinrich

Theresa: good for you! You look great! I'm heading down the Barbie boob pathway - if Barbie had small boobs.

Lee: I'm so nervous about my upcoming TE placement. I'm going down a size on my real boob so I won't have as much filling to do, but I know it won't be a picnic. My brother-in-law is going to come take care of me after Alan leaves town on Sunday (8/30).

wpmoon

T- you look great! So proud of you!

Lee - I'm so sorry you've been in so much pain! But I'm so glad you told them to stop.

Saw the head/neck doctor today. She said I had an irritated blood vessel, which has been causing the nosebleeds. So, she did a standard ear/eyes/nose/throat exam, then numbed my nostrils with lidocaine, stuck a camera each nostril to take a look, and then cauterized the vein. She said to clean it out with saline, and moisturize with aquaphor. My nose still feels weird.

Tomorrow is last radiation!

shaz101

CONGRATULATIONS Whitney 🎉 🎊

Carrie I hope you're going as well as possible.

Lee so sorry to hear that you're in pain. I hope it improves quickly.

I'm bored... why do you all sleep while I'm awake! I. Home now. Staying with mum was great, but I'm so glad to be back home.

ninjamary

Theresa - You look great. At first I thought it was a pic with your hair pulled back in a pony tail. I wish I was offered a PET scan. I get nothing. Just one mamo a year. At my final visit I told my MO about my neuropathy and muscle pain and she looked like a deer caught in headlights.

I'm one month out of chemo and I have slept through the night for over a week. Yea! The head sweats have abated and now I just get sweaty, but that could be the humid heat wave we have on the East Coast. The muscle pain and neuropathy are much, much better too.

I've gone out once in public without my wig (farm stand in another state) . I've shown most of the people in my office my "natural" look, but I still wear a do-rag here. I quit with the scarves as they scream cancer victim. The do-rag looks more like; i'm a slob, i'm cleaning houses, or i'm some sort of old hipster. I must admit I love driving in the car in my natural state with the windows down.

shaz101

Mary did she say why you were still having the muscle pain? All my joints are still causing me pain. At my last mo visit she just wrote down my woes but didn't answer any of them!

Jackbirdie

Whitney- congratulations on finishing today! 🎉🎉🎉🎉👏🏻👏🏻🔔🔔🔔👏🏻🎉🎉🎉🎈🎈🎈🎈🎈🎈🎈

Mary- glad you are sleeping better now. I bet I know what farm stand you went to. My brother lives in Springfield, PA (not that far from you- I used to live in Wilmington, did I ever tell you?) Anyway, they rave about this place near them. They go there several times a year, strawberries, tomatoes, pumpkins....I can't remember the NAME!!! Argghhhh.

Carrie- thinking of you...

Sharon, I only this week feel like the leg and bone pain has gotten better, which is different from the tight muscles I think came in the bottle of Tamoxifen. I think it just takes time, fluids, and I think my granny yoga is helping. My MO just blinked an nodded when I mentioned it. I never say that much about it because the post mastectomy site still hurts more. He is sending me for LE massage, thinking (not for the first time) that it could be truncal. I was going to wait till PT was completely finished but I'm getting a bit desperate about the pain again. And any kind if massage sounds good right now, as long as they are very gentle. Glad you are home again and GOOD luck on your VERY LAST ONE on Monday. That must be such a relief! 🎈🎈🎈

Whitney, also so glad there was a relatively simple cause and treatment for those bloody noses. Hope your sensation returns to normal soon and you are rid of all that for good!

Sloth- you took the words right out of my mouth. I really couldn't bear the idea of anyone doing anything surgical to the area formerly known as my breasts! Ack

So glad to wake up and chat with you all in the morning. I'm glad we are hanging together.

Jackbirdie

NinjaMary- was it Linvilla Farms in Media? If not, you should try that kind next time you feel the need to go commando out of state! Looked it up haha. Driving me crazy I couldn't remember.

Leighrh

Hi Ladies.. Haven't posted in a bit, Ive been such a Debbie downer lately and I am still riding the chemo train and most of you have moved on.

I did get some good news yesterday at Taxol # 10.... Deportation date is set... LOL Sept 8th!!! Last chemo is Sept 3!! My MO said I could have it out the next day if I wanted but I couldn't schedule it He also said I will take 4 weeks off before rads! Is that normal? I really don't mind to tell the truth a 4 week break sounds beautiful!!!!

13 more days of poison........... Counting down!

Jackbirdie

Leigh- we may have moved on from chemo, but not from you. Besides, many are still doing Herceptin for a year. I'm sorry you are down but so excited you have a date for deportations!!! That is great. Really something to look forward to. I have marked both days in my mojo calendar.

Jackbirdie

Chemo girls' fight song

Hi, I am being maybe a little silly, but I wanted to play this for Lee, Carrie, Allison, Sharon, Whitney, and Leigh today. For chemo-ing, deporting, surgery recovering, fills, and all other pitas we would rather do without. Maybe this will put a little spring in your step. If I missed anyone with "stuff" going on, this is for you too.

slothabouttown

Leigh, I had a three week break between chemo and rads. I appreciated every minute of it! Rads were easier for me than chemo, the initial idea of it and the machinery gave me some anxiety but the techs were all really sweet and there was something about going there 5 days a week for 5 weeks that started to feel really proactive and measurable compared to chemo.

You'll do great with it I'm sure, lots of good info on the rads threads about moisturizers and comfy shirts etc. You won't need the arsenal of supplies we had to amass to get through chemo but there are a few items that will come in handy!

Trvler

Leigh: We are with you in spirit!

Italychick

Leigh, it will end. The closer to the end, the harder it gets. You just want it over, I totally get that!

Slept late, woke up going aaaahh, no agenda, bike ride today, then remembered I have Herceptin at 11:00. Major downer! But I'm still doing my bike ride so that's at least something. I just hate the poking and the chemo room atmosphere anymore. So Leigh I will be there with you in spirit and in body

pboi

Leigh...I want to echo what Katy and others have.said. While many of us have moved on from chemo and some from rads, you're still a part of the group here, so share with us, whatever is going on with you. We're here for you

I too started rads 3 weeks after chemo, and share much of the same as sloth mentioned above, it was easier than chemo. The one exception for me was the fatigue. It started slowly, but near the end and beyond the 5 weeks I was super fatigued. Exercise, keep hydrated, eat protein, and moisturize...it all helps.

PB

ninjamary

Katy - You lived in Wilmington?! I've lived in Delaware all my life. I used to live in the City of Wilmington when I was in my 20s. Trolley Square area. I have been to Linvilla orchards! We went to Milburn orchards as we had just finished hiking in PA/MD. Milburn has donuts. It's a no-brainer.

Shaz - No. My MO said nothing about my muscle pain. I think I have your MO's twin sister. I've been doing stretching exercises on my own. Pointing my toes, or standing on tip toe, ankle circles etc. It used to hurt quite a bit, but as I keep doing them I'm feeling better. I think one trip to physical therapy and some instruction on exercises and massage would have been a huge help for me.

ninjamary

Leigh. you lucky girl on getting the port out so early. They forced me to keep mine in for two weeks after Taxol! It served me no purpose. I feel like everyone there wants to make my life as miserable as possible. Ugh. My rads start on the 24th of August. I ended chemo on July 31st. They usually wait two weeks (or so my RO told me) to wait for all the chemo to leave your system. I waited so long because I could not get scanned because the port was in my tumor site. (I had two ports) Enjoy the break. I sure have.

Jackbirdie

Yes NinjaMary! Also in the Trolley Square area. Walked my dog on the Brandywine towpath that runs through those parts. Lived on Shallcross. I'm sure you know it. Just think. I may have stood in line behind you at the market! I was there circa 1987.

Amazing, small world.

KBeee

Leigh, Glad you can get your port out so soon after finishing. I get mine out on the 31st of Aug, which is 20 days after I finished. I get 2 weeks and 2 days as a break after chemo. I had my sim today. I am glad they are being aggressive, but they are being even more aggressive than I anticipated. It'll be good long term, but life will suck for a few weeks at the end in the short term. One day at a time.....

Jackbirdie

One more for Leigh and Herceptin sistas

Leighrh

I love you ladies... thank you!

I am feeling better now that I can see the light at the end of the tunnel... I can do anything for 2weeks... 13 days right!!!

Still no real signs of hair and I am sure that is what really gets me down. I know it will come back but it just bothers me. Petty I know but that's been one of the biggest things for me... I JUST DON'T like it!!!

I am not really worried about Rads... I spent many summers as a young stupid gal baking in the sun... what is one more sunburn... LOL Kidding of course.. but Rads just don't bother me. I don't think it will be the complete drain on my life the way chemo has been! I hope I am right!

ninjamary

katy - one final Wilmington moment...I met my husband at the Logan House. The Acme Market ...omg they are so slow in there. I know Shallcross, the Brandywine, the path, the swinging bridge. Our current dog's AKC name is Anatypia Brandy of the Wine. Love that area. Now I'm in the burbs.

ksusan

A real pleasure for me about radiation: Wallet, moisturizer, protein shake. Nothing else! No schlepping lunch, snacks, vomit bag, medications, things to amuse myself, change of clothes, etc. 15 minutes and I'm out. It feels luxuriously unencumbered.