April 2015 Chemo Crew... Starting in April? Please join us!

KBeee · May 2015

What an awesome daughter you have! She is beatiful!

mysunshine48 · May 2015

Hi, I am reading every word on here because I will be starting CT on May 14. My MO said I do not need a port since I will be having 4 treatments. Anyone do this with an IV only? I hate needles but am sort of happy for no port because that scares me too. So, anyone who foes this without a port? Does it hurt when the medicine goes in?

I did the BMX, but this scares me more!!!!!!

littleblueflowers · May 2015

Thanks for the advice on icing, kbee!

Lynne, your daughter is awesome! So cute!

Good luck everyone going to the chair tomorrow!

KBeee · May 2015

Mysunshine, I did TC in 2013 and did not have a port. It did not hurt going in. Just a small IV poke. Hydrate, hydrate, hydrate. Ask your doc about Neulasta. A lot of docs skip it with TC, but I had a neutropenic fever on it as have several of our April gals. Neulasta will helpprevent that. Take Claritan the day before, day of, and several days after Neulasta to prevent bone pain. TC usually causes little to no nausea. You can do this.

Stephmoen · May 2015

thank you everyone for the birthday wishes!! Love you all

slv58 · May 2015

Stephmoen a very Happy Birthday! I love celebrating birthdays now, I feel blessed to reach them and get so annoyed when family/friends complain about theirs! Birthdays are special!

For those complaining of burning when peeing, I read a tip, to have a squirt bottled filled with water that you can "rinse" after eliminating as the chemo is pretty caustic leaving the body.

Wishing all those who are visiting the spa and easy time!

melb44 · May 2015

Happy belated Birthday Stephmoen!

Fran2014 · May 2015

Stephmoen-Happy Belated Birthday!! Wishing you so many more birthdays filled with joy, laughter and good health!! (So sorry I'm "late to the party" but it was a real tough weekend. Round #2 kicked my butt but after the LONG weekend of SE's I'm reentering the land of the living again-wahoo!).

Lynne- all I can say is that you and your DD are just amazing!! I'm a school social worker & spent many years of my life gaining an abundance of "book knowledge" which tells you to do "this and that".... THEN... cancer enters our lives and I have to help my own children through this process (twice). While I'm not saying that the books are not helpful in making some researched based suggestions-Here's what I learned.... each child is so very different and deals with this whole experience in their own way. They are just like us, however, and they want to feel "safe" and "included in the process". It seems to me that you are doing exactly that!! Big kudos to you!

ksusan- Love the idea of a "gardening bday party"-very funny!!! After years & years of saying that I wanted to start a real garden, my DH surprises me with an early "mother's day suggestion" & asks if I would like help in really getting one going this year. So, he & I picked out the place where we are going to plant some veggies and herbs. He is planning on picking up the supplies we will need & I have to say that I'm quite excited to start this project!! Sometimes it's the little things that make the big difference in our daily lives.

Kbee- as wiped out as I feel right now (day #5)- you have motivated me to get off this couch this am and at least take a short walk. Your right-the more I move, the better I will feel. Thx for the "pep" talk!

Wishing everyone a great day!

littleblueflowers · May 2015

Ladies whos ports are STILL bugging them....I just read back through my pre placement info, and it pretty much glossed over any discomfort. It was all blah blah blah your lung could collapse or you could diE during insertion. What it did say and It struck me as hilarious, given the surgery that I had just had, was that if you are very thin it could be more visible or uncomfortable. Well, kind of the point of a BMX is to remove all fatty tissue from collarbone to ribcage......so of course we have no body fat there!!! Forehead slap.

lovlilynne · May 2015

Hi, off to the bar in a few minutes. DH is going with me. He was gone fishing all weekend, and I hadn't realized that he took Monday off from work to "recuperate" (it's really ridiculous when you think of it!), so I'm making him go with me and hang for a while to see what I'm going through. I don't think he gets it, but I know he's a very visual and reality based guy. It was like that when I was pg too - very nonchalant until the baby was in his arms.

Lynne

ThePrincess · May 2015

Good luck ladies getting treatment today! Kick those bad cells in the ass!

gkodad · May 2015

Lynne - she's adorable! I know she's proud to be part of your journey and [minus the guidance counselor??] she's going to get a lot of support from her friends. She needs that just like you do.

kbta032803 · May 2015

Happy birthday Stephmoen!!

Good luck to all getting treatment this week.

gkodad · May 2015

Regarding ports and pain - the skin area below my port and above my mx incision is incredibly hypersensitive and still wakes me up at night, but the port itself seems to be fine after two weeks. However, in the hospital after installation when I complained that it hurt worse than the mastectomy, the nurse said that doctors routinely underestimate the pain because it is just a "procedure". I think the "no fatty tissue" explanation is probably right...there's nothing there to cushion it. Maybe people getting ports for other reasons still have tissue and don't have as much of an issue. So we breast-free ladies just sound like a group of complainers.

littleblueflowers · May 2015

Gkodad, my BS was the best in the state from everything I've heard....but he is a remarkably poor communicator. He waits for me to ask the questions. Um.....I found out I had cancer on a Friday and had my boobs off the following monday....not a lot of time to formulate questions About how having no fat would impact port comfort! Not to mention saying hello to my lumpy ass chest ribs for the first time since I was about 9, but that's another story...

Lynne, good for you for taking your husband with you! Good luck in the chair today! Feels so good to be checking these off!

ksusan, I know exactly how you feel about not being the strong one any more. Such a blow to my sense of self. But look at it this way maybe....you are still the strong one, your bodies resources are just diverted elsewhere right now. I'm pretty sure each chemo does as much damage as an ultramarathon, and takes as much energy to heal. We aren't weak, we are in the recovery phase!

lovlilynne · May 2015

Thanks for the compliments on dd2 - I think she looks beautiful - rockin a buzz.

Here are some shots from the bar. Still hanging on to my hair for now, no tingling yet. Emend is almost done. Very full bar today.

Beachbum1023 · May 2015

Hi Lynne, looks like you have a great backup with you today!! I hope all goes well, and you feel good to enjoy the rest of the day when you are done!! Cheryl

Karen30 · May 2015

hello ladies- day #3 post AC#2- wiped out today just want to lie down - very thirsty drinking a ton - nausea etc ok just this same shaky weird feeling like last time this must just be the way my body reacts I guess. So today I work from home and just rest I guess.

sheshe3 · May 2015

Hi ladies. I haven't been on fora couple of days, but have read and feel prettycaught up. First off, we have some new ladies and welcome to you all! So many lovely photos too! I enjoyed reading through and missed you all. Littleblue, Montana looks lovely! Thanks for Sharing its beauty! Stephmoen, hope your birthday was wonderful yesterday and so happy you're well.

Lynne, you must be so proud of you adorable youngest! What a brave and bold thing for her to do! I feel sure she will receive incredible support from her peers. Also, good luck to you at the bar today and in the days following.

Good luck to all visiting the infamous chemo bar today.Hoping mass murder on cancer cells and SE's low to none!

Here's my good news. I finally got results for my genetic testing and all came back negative. I'm so relieved! My worst fear being that I passed this on to my daughter and granddaughter. Also, I was able to make my surgery decision and get a lumpectomy instead of bmx and oophorectomy (sp). I have scheduled my surgery and it will be on May 29th which falls a couple weeks after chemo#3. Then after some recovery time I will resume my last three chemos. Been feeling pretty good and getting out for short little jaunts here and there. My only SE's currently are diarrhea and fatigue. Take care my friends and have a great day!

56rcr · May 2015

I just had my first chemo last Wednesday. Can someone tell me if they felt like they were burning inside after their 1st round and if they couldn't get comfortable setting or laying down. Had basically 3 hrs sleep last night and I'm wondering if I can expect this for a while.

sheshe3 · May 2015

Just thought I'd share a couple of photos from my last trip to the lake...

ksusan · May 2015

Sheshe, that's great news about the negative genetic testing! I was very relieved four my sister's sake when I came back negative.

KBeee · May 2015

Sheshe, fun pictures! Great news on the genetic tests!

56rcr, are you taking anything for heartburn?

Karen, Today and tomorrow are likely the worst. I hope you start to turn the corner and feel better soon. Glad you have one more behind you.

Lynn, Hope all went well at the chemo bar today. Glad your hubby could come with you. Love the pix! Hope that hair hangs on a little longer. I hope you are feeling good.

Littleblue, We are much, much stronger than anyone not going through this will ever know. Most injuries heal with surgeries. Many cancers require chemo or a surgery, but little else. Very few illnesses require surgery, chemo, rads, more surgery, etc. This is a long journey and you have to be a heckofa tough cookie to handle it all...but we do. On the flip side, there are great treatments available and we have each other to share the journey with. A good friend has a neuroendocrine tumor in her liver (and bones) and there is literally no one anywhere around she can find who has had the same thing. As much as we share with each other, I know there are questions I can't answer and issues that are hers alone, and it is a very lonely journey. So we are strong, we are brave...no matter what side effects chemo dishes out, we show up next time. Once again, I am grateful to have each of you for support.

I have had no port pain; it only aches when seat belt is on it. It does stick way out though, because I am very thin. I know it is ugly, but it is summer and I will wear tank tops, and if someone does not like it, they can look the other way. I think a lot of experienced surgeons jerk things around a lot during port surgery. I had a new resident who went really, really slow. BS was right there with him, but I think he was so slow and gentle...more so than more experienced providers, that I had little to no pain afterwards. I think perhaps the surgeons need to slow down a bit and respect the healing process. I think surgeons in general tend to downplay the recovery process.

ankledolphin · May 2015

This song is playing on my computer at the moment and I think its a song for all of us:

"Fight Song" by RACHEL PLATTEN

Like a small boat

On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
but I can make an explosion

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep
And it's been two years
I miss my home
But there's a fire burning in my bones
And I still believe
Yeah I still believe

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

A lot of fight left in me

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
but I can make an explosion

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
Cause I've still got a lot of fight left in me

Now I've still got a lot of fight left in me

ksusan · May 2015

Rocking the chemo at work.

littleblueflowers · May 2015

ankledolphin, that gave me chills! Yes!

Ksusan, you look powerful!

Sheshe, thank you for sharing those pix...so lovely!

Mondays chemo-sabes, everyone doing ok? Praying for you right now!

Kbeee, I'm so sorry about your friend. I'll be thinking friendship to her as hard as I can, and praying so she doesn't feel alone.

Whew, I'm tired. Jogged 2 miles with hills this morning and been packing and running up and down with boxes all day. Trying to get mostly moved before chemo day on Thursday so I have a brand new house to feel yucky in lol....just like the song ankledolphin posted, there's still a Lotta fight left in me! I'm so great ful for all of you, you are an inspiration to keep going no matter whqt!

Alibeths · May 2015

flowers, you are moving????? Omg!!!!!!!!

lovlilynne · May 2015

Melissa, that song is great - I'm going to get it and add it to my walkman and phone. I am so out of it with most popular music - only play it when the girls insist when we are in the car. Anyway, I can see it being motivating on my walks - although not the greatest BPM for pace, but I'll put it at the end :-)

ksusan, you are rocking it! What a cool space at work.

56rcr - Did they prescribe any Ativan? I took that my 1st night to ensure I could relax and go to sleep. I've had a couple times where my legs and body seemed really twitchy/jumpy, but it went away before it became sleep prohibitive.

Sheila, beautiful pictures. Congrats on the testing - that is HUGE!!! We have to do the happy dance for every piece of good news in any of this - in my case the bombs kept landing on target - yes, you have cancer, yes, the node is positive so you'll have to have chemo, no we didn't get it all so you'll have to have more surgery. Ka-pow, ka-boom, Kaaaa-BOOOOM. Each one was what I imagined was the worst case scenario. So, when we get the BEST case, YA HOOO.

KB, I hope you are turning the corner on your SE - it sounded like this one hit you a little harder, but you are still an inspiration with everything you do.

Today the nurse, Sarah, and I had a good laugh. She was pushing the Adriamycin, and I introduced her to Chuck. I told her how he had been gone fishing all weekend, and that I had found out that he had taken Monday off from work to "recuperate" from the trip. She chuckled. Then I laughed. Then she laughed. And then it turned into a mini hysterical laughing fit. It felt good for someone to relate to how ridiculous that sounded. Chuck took the ribbing, and he explained why it was so taxing for him to fish all weekend (if you are curious - this is fresh water bass fishing).

I am feeling very good so far, have had tons of water as evidenced by the tons of bathroom trips. I ended up getting home about 1 hour later than planned - I don't think I mentioned this, but where the port tube is in the neck, it has stayed very red and irritated. The stitches where sticking out on either side, so I asked about it today, and we ended up going back to interventional radiation department for them to get it checked out. I turns out the stitches should have been removed 2 weeks ago when I went for the follow up. I guess not all the surgeons use them, so the nurse or NP or whoever I saw didn't do it. So, when she removed one, there was a little bit of pus, and now I have to watch it.

But, my sister was at my house when I got home, and I ate, then I had to take a conference call for work, and then she and I and Gwen went for a walk. MapMyRun is saying 4 miles, but I know it's only 3. I don't know what's wrong with MMR lately.

Oh, and I asked about the Zofran pill and the insurance. The nurse checked, and the billing person said that some insurance companies do that - they don't cover it. Is that crazy? What's more, that they are billing me for $224. for 2 pills. She put a note into my file that I will take my own Zofran from my script. I will have to file an appeal to see if I can get it covered for this one instance. But, I may wait to see if the hospital bills me for it - sometimes they write that stuff off.

Heading to Boston early tomorrow morning for an all-day work meeting. I may add a little Dexamethason to the regime for an afternoon pick me up.

Lynne

Fran2014 · May 2015

littleblueflowers- OK you had me at "jogged 2 miles" but then to add packing and running up and down with boxes to move... You must be superhuman! You go girl!!!!

lemonadehk · May 2015

Mysunshine, I did one TC and now doing AC-T without a port. It doesn't hurt at all. Don't worry. I am in Hong Kong and it seems that most people are doing chemo without a port, which worried me a bit. Oh well...

April 2015 Chemo Crew... Starting in April? Please join us!

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