September 2013 Chemo Group

VintageGal1111

THANKEE SpecialK! I wrote the creams down.

BetterDay

Yeah!  The boards are back up (apparently I am addicted)!

kjsimpson

Alfranco,
Working was very tough during chemo.  I was off a lot and barely functional when I was in the office.  My pride in performance suffered a LOT.  With surgery, I was off the two weeks afterwards and teleworked for awhile after that.  With radiation, I am motivated to go to work every day because the Radiation Center is 10 minutes from work, so I come in an hour early and leave an hour early to get to radiation by 4pm.

Just realized that I actually had my first two week pay period since last JULY where I actually worked 80+ hours (a full schedule)   I also banked a little compensatory time for future use (am out of sick leave, now).  My bosses have been fantastic and I'm starting to feel like  a contributing member of the team again.

I hope it goes as well for you!

kjsimpson

All,

I used SpecialK's cream recipes except the Aquafur.  Just couldn't handle it's consistency and feel... too thick and goopy.  It was impossible to wash off of my hands after applying.  Highly recommend the rest, though.  Especially the miaderm and Aloe.  Those were my mainstays and the docs are saying my skin is holding up remarkably well for a blonde hair'd, blue eye'd, really white gal!!  ;-)

I would also add to the list... A bar of Oatmeal soap and a bar of Aloe soap.  I think they really helped.  I have only used those two soaps each day in the shower.  Lathered up the incision areas with the oatmeal and aloe soap bars and let it sit for a bit while I shampoo'd my hair (hahahahhahaha).  Then, when I got out of the shower and dried off, I applied the lotions.  Worked really well for me.

Also, if you are doing radiation, get a couple of flexible cold packs that are large enough to cover your treatment areas.  It feels really good.  Just don't apply the cold direct to the skin.  Wear a T-shirt and put the cold packs over them. 

 

kjsimpson

All that work on the site and no "like" button, yet.  :-(  

Anonymous

In Mexico! Recommend Tamales!

70charger

yawn!  All this driving is making me tired. Stretch!  Almost time for a pit stop.

kjsimpson

Running,
That was hilarious!!  ;-)

18 down/12 to go.

I Misappropriated Running's Tamales

lighthouselady

Peacockgirl - I have pain in my elbow, too. Just the one, though. It's weird!

Kbeee - I feel the same way. I've been eating ok and riding my exercise bike almost daily, which is more than I've done for weeks and weeks, and yet I'm feeling flabby. Ugh.

clickchick - I'm sorry about the path report. {{{hugs}}} I'm with the other girls, you need an explanation for that. I will say imaging isn't going to be 100% accurate. My post-chemo MRI showed NOTHING - no disease at all. And yet my BMX pathology showed a 2.5cm area of tumor fragments and 9 positive nodes!  I was not expecting that.

KJ - I love your hat. :-) I'm going to take a page from your book and cover my eyes during rads. Such a good idea to INSIST on being able to wear your own shirts. Why didn't I know you before this mess started so I'd do the same?? LOL My PS has nice robes that I get to wear, but I am so sick of the paper gowns and the cape-type gowns. Ugh. Thanks for the tips on the soaps and cold packs. I have to start getting prepared.... 2 weeks away from rads. Yikes.

knightzoo - I'm right there with you on the hating the wigs thing. I know most people with the hair I have would go topless, but I'm used to having LOTS of LONG, THICK hair, so I'm just not ready to go out and about with a shorter-than-crew cut. I'm glad rads is going well for you. Is your size difference very noticeable? I will be getting one more fill in my to-be-radiated side next week and it'll be bigger than the other one.

viji - Good for you for making time for YOU, and all of the physical activity is wonderful. I wish I had that much energy. LOL I know it's a cycle, though, and the more we get moving, the more we want to move.

Running - HAHAHAHA! That was great!

I think I missed the road trip to Mexico because I had to head east to Dallas. Boooo! Somebody drink a margarita for me!

Hubby and I made a date night out of our 3 hour drive to my appointments today. We had a free room at the casino so we went yesterday afternoon. Unfortunately we didn't have good luck at all, but it was nice to "get away", even for an evening. And my first appt today wasn't until 1pm so we were able to sleep in and laze around until checkout at 11am. I got another fill, which brings me to 385. PS says I look like I have much more than that. Not sure why that is, unless he dictated the wrong amount from surgery or they put more in during one of my fills than they said. I doubt that, though. Anyway, I go back next week for one more fill before rads. He thinks I will most likely just get a fill on the side that will be radiated, since that skin tends to tighten up and he wants some extra "room" to work with afterward. So I guess I'll be lopsided from now until November. Ha!

After that I had an occupational therapy appointment and she said I don't need to come back unless I feel I need to see her again. Woohoo! I still have some cording issues and need to work on my range of motion, but things are SO much better and she said I know the stretches and massage to do here at home to help.

We got back at 8pm tonight, had to pick up the kiddos, get all their overnight stuff put away, get homework done, showers, etc. <sigh> It's 9:42pm and I'm just now sitting down. I know I sat in the car for 3 hours, but I'm exhausted!

I Missed Road Trip!!

kjsimpson

So, all days are not full of optimism and jokes...  Yesterday afternoon I had a meltdown of sorts at radiation (fortunately, part of it was while the techies weren't in the room and while my eyes were covered with the hat), quickly recovered, then it restarted afterwards on the drive home.  Called my best friend and just cried.

What started it?  This week, when they do the 'boosts', they mark the overlap line because they have to do the boost in two sets.  Each day, they remark it.  Well, I cannot feel my left chest when they mark me up.  The reality of that for the rest of my life kinda sunk in hard.  I'm sure you all can understand why and I'm not one to go into intimate (no pun intended... ok... well... kinda punny intended) details... but it did really hit me over the head that this is the new reality.

I am grateful for every bonus day that treatment will give me to be at the special moments in the lives of my children.  But there are some things about this that really suck.  I had hoped to put that particular crying fest off until after rads, but such was my fate last night.

kjsimpson

LighthouseLady,
Your docs are probably grateful you didn't meet me before we came upon these detours.  ;-)

lighthouselady

KJ - The no sensation thing hit me yesterday, too.  After my fill at my PS office, the nurse was cleaning the iodine off my skin and I realized I couldn't feel it.  I mean, I could feel the "pressure" of her rubbing, but that's it.  She might as well have been cleaning a plucked chicken.  {{hugs}}  These meltdowns are necessary, but man, they seem to come on at the most inopportune times, right?

I have a toothache!  Ach!  Last week I had a temporary crown put in on top, and the bottom tooth on that side has been hurting.  I thought it was just because the temporary is too low or whatever, but now it's toothache pain and VERY sensitive to cold.  So I'm guessing there's more going on there.  I just called the dentist since I was gone the last two days... he's out of town until Wednesday!  Boooooooooooooooo.  I see lots of percocet in my future. 

If it isn't one thing, it's another.  Ugh.

VintageGal1111

Oh kjsimpson

 so sorry about your meltdown but it happens, we never know what will bring it on. 

I don't have feeling in my arm pit because of the lymph node removal surgery. It is a weird feeling.When I think of the possibility of my whole little concave chest being like that after BMX next week it does freak me out. 

At least we can come here, & know we can feel free about revealing stuff like this. 

Hope today is a better day for you!

simplelife4real

Betterday, did your back pain get any better?  It's scary to feel new pains these days.  I'm hoping it's just muscle pain that has been aggravated by your surgery.  Let us know how you are doing.

Running, How is your PT going?

Peacock, That is awesome your skin pain when away so quickly with the skin care.  What a relief! I loved what you said about having people that love you and are good cheerleaders.  That is so true.  Those words of encouragement coming from people we love mean so much too.

Vintagegirl, I'm 61 and it sounds like we are in the same boat about needing to get back into shape.  I look at my arms and can't believe how much muscle tone I have lost.    I went shopping at Costco last week and the next day my legs ached as much as when I ran a marathon several years ago.  It's going to take time and building up slowly.  I'm not used to that.  It's different in my 60's than in my 30's or 40's, but I believe we can both become stronger and more fit than ever.  We just have to be more mindful of how we go about doing it.

Clickchik, I sent  you a private message about some post-surgical options with TNBC.  I'll be thinking of you today as you see your MO and get to discuss your path report in detail. (((hugs)))

Charger, is it too late for me to hop in your trunk?  They are actually building a new drive in theater outside of Nashville, TN right now.  Ya'll come on by.....

KJ,  I absolutely LOVE your rads hat!  Also really like the idea of negotiating examination attire.  They let me wear my warm cap in surgery (at least they told me they did...no telling if I actually had it on the entire time).  I was surprised when I asked.  I just knew my head would be cold even if I couldn't feel it.  I guess it never hurts to ask!  Did you use the oatmeal soap and the aloe soap instead of the basis soap descriped in the "recipe" SpecialK posted?  I also like the info about the cold packs.  I think I have a large one that will work perfectly.

Knightzoo, that's interesting your leg hair came back so fast.  I have nothing....but not missing it there either. LOL  I can really feel the peach fuzz on top and my 5 o'clock shadow on top is more noticable daily.  We are getting there!  I'm glad you are healing so well having surgery close after chemo.  I think it helps a lot that you are younger.  You are doing great!

Lighthouse, glad you go a little mini vacation on your last trip to Dallas.  Hubby and I have done that a couple times too when we go to Nashville for my treatments.  We stayed  the night when I got treatment on my birthday last November.  I was so nice!! We deserve a little break from time to time.  How is the tooth?

I met with my BS, MO and RO on Wednesday....first time since my surgery three weeks ago.  I'm now on 6 month visits with BS, and 3 month visits with MO.  The RO set me up with the local hospital here in my town for Rads.  My first appointment there is next Thursday.  My MO puts my chances of survival now at 85-90% with my residual TNBC after surgery.  That's much better than it was six months ago when I started.  She also put me on metformin for the next five years because it seems to be particularly useful for us triple negative sisters that have no targeted therapy options.    I'm checking out a post-surgical clinical trial for people that did not achieve a pCR, but I am thinking at this point that I'm not going to do it.  Honestly, I'm tired and just want to get on with my life.  I'm working on building up my strength bit by bit.  I'm wondering how tired rads will make me.  I'd really like to move forward (rather than backward) when it comes to getting back to strength and endurance.

kjsimpson

Simplelife,
Yes, I used the oatmeal soap and aloe soap instead.  It has been the only soap I've used during rads.  They weren't expensive, either.  The bars were less than $2 each at SuperSupplements (where I got some of the other lotions).

My RO said NOT to use antibacterial soap.  I forget why, but she was adament. Perhaps the antibacterial has a drying/moisture depleting effect?? 

Rads have been very tiring.  But I think a lot of it is mentally tiring, not physical. 

This weekend I'm taking a long road trip to watch my son play baseball east of the mountains.  That will cheer me up!

kjsimpson

vintage,
Thanks!  I'm better today.  I'm sure I will have to deal with it again.  But I just want to get through rads first.  I'll plan a meltdown in April... April showers bring May flowers.  ;-)

Lighthouse,
Sorry you had a bad day yesterday too.  Really sorry for the toothache.  Enjoy the Percocet.  :-/

VintageGal1111

HAIR?! 

One month post chemo & the last couple eye brow hairs I was hoping to hang onto have left!

 No eye lashes at all yet. But on closer inspection today I have weird tiny fuzz hairs on the tip of my nose kind of between the nostrils. that is strange. But still no inside nose hairs. And lots of peach fuzz on my chin, lovely.

 I have one small area side of my shin that has some white hairs, rest of legs are still hairless. And on my head, little mini white hairs popping up.

PeacockGirl

simplelife: metformin? why? isn't that a diabetes drug?

really need to have my arm/wrist/nerve pain addressed. Woke up in a dither last night after a dream where they found mets in my neck bones. so far fetched and irrational at this point but it tells me I'm worried about it and need to find out if my neck is out, is this taxol left over nerve pain, side effect from rads and having my arms overhead for 6 weeks, just inflammation or what.

In other news I start teaching at another yoga studio on Mondays next week, I will be back teaching 4 fitness classes a week at the local university (been on hiatus since September) and I applied for a part-time job with the local school system to manage their health and wellness grant they got for the teaching staff. All this in addition to running my little yoga and personal training studio. It reminds me how busy I was before all this cancer stuff happened. Eager to get back to my former self. Every day a little better.

BetterDay

KJ, totally understand your meltdown.  I've been trying to ignore that effect of my surgery while I'm recovering.  But I know it will hit and I will mourn like you.  Sending hugs your way.

Simplelife, I just can't tell on my back pain.  It comes and goes, so I hope it's just one of those things that's no big deal.  Supposed to let my MO know next week how I'm doing.  So happy to hear what your doctor said about your prognosis.  Those are some great numbers IMHO, especially given TN numbers generally.  On metformin, I asked my MO about it, and here is what she said:  would not recommend metformin as comes with side effects and no randomized data to support it.  That said, I lurk on the TN board, and there is an awful lot of talk about metformin over there.  I am going to ask about it again when I see her in early April. 

Clickchick, let us know how today goes.

Peacock, so cool to see all you have going on!

Loving all the hair pictures.  Thanks so much for posting them!! I CANNOT wait to get something going on my head.  Here's my checklist so far.  Legs, check.  Chin, check.  Head, nada.  I'm not liking the order of things.

Hope you all have a great day and a fabulous weekend.

KBeee

These IMRTs make my day!!!!!!!

LHL, SO sorry about the tooth pain.  I hate, hate, hate toothaches and hate going to the dentist...despite the fact that I really like my dentist and know him well.  Glad the occupational therapy is helping.

KJ, Yesterday must have been the day for meltdowns.  For me, a song on the radio set it off.  I can't even remember what song it was, but the words hit home.  Luckily, my kids were in the back seat and did not see the tears.  Also thankful that it was short-lived.

I went for a run yesterday and realized how horribly out of shape I am in.  Last summer I had worked really hard to get myself back in shape.  I hate starting from square one.  Mind you, I use the term "run" loosely.  If it is faster than a walk, I call it a run.

I Must Run Today.  The plus is that the fresh air helps immensely with my mood!

 

BetterDay

My two latest questions.  First, I have a rather substantial indentation in my chest where my port used to be.  It's like the port squished everything down while it was in there.  Any idea whether that will pop back out?  I think it's more pronounced because my new foob is still sitting pretty high.  So there's a swoop in where the port used to be, then a swoop out where my foob starts.  Second, and so sorry for the TMI, I'm wondering about nipple issues from my NS BMX.  Right after surgery, they were both pressed flat and were very dark.  The left one lost the dark skin, sprung back out, and is now pinker and much nicer looking.  The one on the right?  Still smashed in and dark.  I know this isn't a surgery board, but you all are so helpful.  Just wondering if anyone else here had NS and what your experience has been.

mercedes60

love all your posts and pics, hoping everyone is hanging in there as best we could. 

Kj  I had a similiar meltdown the other day, just looking at my dogs in the backyard playing and started crying, it was short lived, and for no particuliar reason. Well there is a lot reason i guess! 

Simplelife, I too am 60 yrs old and yes I am 2 weeks pfc, and boy my legs are weak did some stetches and squats to build muscle the next day could barely walk, even. my arms are weak. I also gained about 10 lbs yikes thank god someone invented jeggings, i feel bloated also. 

Hair is still struggling,  white some dark, look alienish before the makeup and still have skin issues from taxol, itchy, blotches on face etc....

Lhl, I think you look great with your hair. 

Anonymous

Betterday- Thanks for your support! I'll probably start rads in the next 2 or 3 weeks. I have to call yet to make the appts. I have the opposite problem with my port area--it stills protrudes!

Alfranco- Thanks for your support--I appreciate it!

LHL-Thanks! Yeah, I thought the MRI would be more accurate. I was surprised that it wasn't more precise and that it didn't pick up my positive nodes at all. I'll definitely have that margarita for you

KJ- I'm sorry for your tears. It's good to let it all out sometimes, but you're right--this cancer stuff sucks. I'm glad you're powering thru your rads--you'll be done before you know it.

SimpleLife-Thanks for your PM. I appreciate the support from my TN sister. I'm going to look into Metformin and clinical trials. I'd say 85-90% survival rate is great!

Went to see MO today. She said my path report was accurate for someone who had little to no response from chemo (she wouldn't expect to find dead cancer cells,etc). She said there's no way of knowing if the chemo had any effect on the "stragglers", but since it had no effect on the cancer in my lymph nodes, and little effect on the tumor, she wasn't very encouraged. She's recommending rads next (so thanks for re-posting the lotion ritual, SpecialK). Overall, she said that at this point, she figures I have a 65% chance of not getting distant metastases over the next 5 years. Not quite as high as I'd like, but I guess it could be worse. I'm going to go for a second opinion, just for the heck of it. And so it goes...

Kelly

KBeee

I started posting last time and forgot to hit submit until 2 hours later...by then a lot of others had posted.  oops!

Chickchick,  I am glad that you are seeking a second opinion.  Perhaps there are clinical trials you can participate in.  I have a friend IRL that sought a second opinion from a university somewhere in NC where the doctor she saw was one of the leading researchers of TNBC.  I can try to get the name of that doc if you'd like.

Mercedes, the muscle weakness is so frustrating.  I hope it improves for you.

betterday, I didn't have NS because my tumor was right behind my nipple.  i hope you get some answers though.  The ahir appearance order would irritate me too.  I hope that head hair makes its appearance very soon.

Peacock, Wow, That should have you in shape in no time!  i was tired just reading all you are doing!!!

Vintagegal, Yay for hair making an appearance!

I will be spending 16+ hours of my weekend at a regional swim meet watching my daugters swim.  I am glad that I got a run in today since I will be doing a lot of sitting.

I hope everyone has a great weekend!

Anonymous

Thanks for offering, Karen. If it's no trouble to get the doc's name, that would be great. I'm exploring all of my options at this point. Thanks again. Kelly

kjsimpson

clickchick,

Definitely need a second opinion. Moving to rads without denting the cancer seems premature to me. If one cocktail doesn't work then they should try another before giving up. 

lighthouselady

I'm Moaning - Rotten Toothache

It looks like pain meds and room temperature drinks are in my immediate future since I can't get in to my dentist until Wednesday.  Blah.  The only water I like to drink is ICE COLD, and that gives me stabbing pain.  Booo.

Peacockgirl - WOW that's a lot.  I feel busy as a part-time worker, softball volunteer and coach and wife/mom.... but I'm exhausted reading what you wrote.  I took yoga a few years ago and man, it's not for sissies!  The most I can manage these days is walking or riding my exercise bike.

clickchick - I know there is a chemo sensitivity test that can be done to see which chemo your tumor will respond best to.  Since you've had surgery to remove the cancer, I know that's not an option (unless some of it is "stored" anywhere?).... but something to keep in mind if God forbid you face this again.  My friend who is Stage IV ovarian cancer had that done on her tumor so they could be sure they were using the most effective chemo.  Good luck with your second opinion.  {{hugs}}

My kids are now on spring break.... so thus begins the daily "what are we doing today, Mom?"  LOL

kjsimpson

LHL,

Early for spring break. 

Hope your tooth settles down before Wednesday.  :-(

KBeee

Chickchick, I sent you a PM.

alfranco

Lhl sorry about your toothache. I hate to go to the dentist but I also hate pain especially in my teeth. I hope you feel better soon.

Does anyone have pain when wearing  cami shirts or undershirt? Trying to find something that is a bit more comfortable.