December 2012 chemo group

FriendGwen

Jenjenl - not TMI!! You're just vocalizing what many of us feel!

Seeing the transition in our own bodies over the last month or few can be rather overwhelming. I find myself comparing things to BBC and after. Like I'll see an email or picture from August and think wow... I had no idea what was about to hit me. And what BS was I worrying about then? Probably money! Funny, I still worry about all the little and big crap too. BC is just another item on the list. But the visual change is pretty wild. I just went to the mall during lunch to buy some birthdy presents for DD1. I kept thinking this is my first time here in a wig. Do people know? For a while I was avoiding my typical places like the local grocery store so that I'd be less likely to run into someone I know. I went yesterday and saw no one. I think I'm finally getting to the Screw it stage... this is who I am right now (same Gwen just with a highlighted perfect looking wig and eyebrows that are insistent on going every which way before jumping ship). It will be another six months before I will look back to my old self and then will be in a very short hair cut. For people that don't know about my BC they will probably start putting it together. I haven't posted any picture of myself on FB since prior to cutting my hair. At some point it will happen.

Sorry... just rambling trains of thought here. Thank you for being a therapy board!

One week post threatment three and I'm so done with my lack of taste buds! I bought $50 worth of random foods last night and the only thing that worked was dark chocolate almond milk. But I was so happy something tasted good I drank a large glass and then got a belly ache! Whaa!

LeeA

I agree with FriendGwen, jenjenl, never too much information.  

I posted this on another thread but I will mention it here as well:  my MO had a sex talk (lol, it reminded me of one of those Sue Johannsen Sex Talk shows) with us yesterday (DH/me) - pre-chemo!  I'm still chuckling about it.  We even came home with . . . lubricant!  I could go on but then that would definitely be TMI!  Ha ha - I love that man (my MO).  Well, my DH, too!  

FriendGwen, I don't know anyone around here so I don't think anyone will notice all the hair changes.  My hair was shoulder-length but now it's short (in the transition stage to eventual buzz) and my wig is a little bit longer than my shoulder-length hair.  I can't see me wearing that wig too much but maybe... I guess time will tell.  I just glanced over at it.  Right now it's perched on the hearth of the fireplace in the bedroom.  I guess I'll need to move it if we light the fireplace.  The lady at the wig shop said they're flammable.  Highly flammable (IIRC).  It's on the hearth because I'm kind of in the process of finding a suitable place for it in my closet (like you, this falls under "things I never would have thought I would have thought of back in the summer of 2012" - although I first felt/saw my lump in the spring of 2012). 

Bren58

I am surprised at how people immediately recognize me with my wig. It is much darker, longer and more perfect than my real hair. Somehow I thought the wig make me look so much different that people wouldn't know who I was. So far all the comments have been positive so I may have to become a real brunette when all this is over. Of course who knows what color it will come back anyway. I actually wind up wearing it everytime I go out, it just looks better on me that a hat.

Gwen - hopefully only a few more days and food will start to taste good again. It's terrible when we go from one food to another trying to find something to satisfy our tastebuds and just wind up eating a bunch of miscellaneous junk.

jenjen - you can talk about anything here. We are all in the same situation and have a lot of the same issues.

LeeA

Miscellaneous junk describes it perfectly, Bren58!  

And I love your photo and if I recall correctly, that's you in your wig.  It looks very natural on you.  I may have to take my mop to get it cut a bit.  

Wouldn't it be wonderful if they could discover a way to mop up all these possible lingering cells without giving up hair in the process?  

Grannyj3

Reading this today, as I was taking my 4th round of TAC, was so entertaining! Just made me laugh out loud at times! Thanks so much for making my time pass quicker.

Bren58

Lee - yep, that's the wig. I had it thinned as soon as I got it because it was waaay to thick. Going Saturday to get the bangs trimmed because the keep falling in my eyes. At least wigs have come a long way since those that were around when our mothers and grandmothers were our age!

LeeA

Bren58, I don't remember much about the wigs of yesteryear but I do remember my grandmother having some really wild-looking girdles.  They looked like torture devices.

Nicole503

Jenjenl ~ no such thing as TMI here (or so I've been told)!  You go girl!!  I could use some inspiration in the sex drive department so I appreciate hearing that you are happy and horny!

beckstar18

Jenjen, I'm glad the depression meds are working for you!  One of my in real life friends with BC is also taking some meds to keep her moods up, she was diagnosed 6 months after baby so was already in a post-partum depression bit when she found out she had BC.  Anyway, if we treat the other side effects we may as well treat that one too! 

FriendGwen, I was just having the same experience yesterday that you mentioned about looking at older pics of yourself.  I was looking at pics of me on FB from just the last year and thinking, "Wow, who would've known then how the year would have ended?"  All the dumb stuff I used to think of or worry about is now pretty meaningless in comparison.

Grannyj3, best wishes for a quick bounce back from tx#4!!

kiwikid

Thanks everyone for your posts. I'm really enjoying reading and want to reply to you all but the fog has got the better of me. Day 5 after ac 2 and after sleeping all day I I think I'm coming out of it. Much more tired than round 1 and Nicole, you describe the persistent low level sadness, which I can relate to.

Last night I had nightmares about bc popping up in all of my remaining breast tissue. it was awful. I woke up to think it was a sign the mx is the right decision.

I hope you are all doing ok.

It's a journey that's for sure.

Xx holly

dcsandpiper

This might be a late reply but I do blood work one week after chemo with follow up with my onc



Though chemo has been hard on my veins and its really hard to draw blood now.

Grace533

Saw my mo one week after chemo 2 out of 4 . My skin is getting red after each chemo so now need to get the picc line before 3 . Can anyone tell how it was being put in and was it a pain to flush out each week. My mo office said they would do it weekly. Just wondered if hard to keep area clean etc.

sophiafred78

For those of you who have pets, did you notice anything different with them?

I ask this because on my first AC one of my cats had a "weird" day and at the time I wasn't sure if it was related with my chemo. Now I went for AC #2 and spent a few days at my parents, but now I'm at my home for 2 days and one of my cats (the same one) hasn't eaten all day. Since food is the most important thing to her, and there's a coincidence in timing, I'm guessing it was my chemo that made her sick

Anyone else? If not, please be carefull. Next time I'm gonna use gloves when feeding them for the first 4-5 days.

Sandra60

Hey ladies - I am running a temp - 100 degrees today - day 8.  I did that last time ( session 1 - I am on session 2 now ) and thought it was from a pop corn kernal that got stuck in my gums and got inflamed / infected.

But now I am wondering if it is just low WBC.  I did not get the nuepogen shots because my counts were all normal before session # 2.  My ONC does not have me come in to test WBC.

Anyone else regularly run temps on days 7-10 ( I think that is the lowest point correct )  ? 

Sandra60

SohphiaFred - so sorry to hear about your cat.  I had heard you should not change litter boxes etc while on chemo because of the infection risk - but had not heard you could give anything to an animal.   Hope he/she is better soon!

sophiafred78

Thank you Sandra. Take care

Bren58

Sandra you are right that about days 7-10 are the lowest point for our blood counts. I have never run a fever though. What does your MO say?

Anonymous

Sandra~I don't know if I get a fever as I've never checked my temp, but on Days 7-8 I have chills & aches after every tx...3 so far. I've just come to believe its part of my SEs.

Thank God today is day 8, do I should be fine tomorrow.

I find, I can keep the chills & aches away by taking Tylenol every 4 hours. I know that's a little more often than I should take it, but its only 2 days. Normally I just take Tylenol once or twice a day for arthritis.



Blessings

Paula

Sandra60

I called my mo and they just had a nurse call back and say drink lots of fluids and if temp goes to 101 to go to emergency . Wow - thought I might get a dr to call me back and explain why this has happened - but no such luck . Kind of feel like I am navigating this whole chemo solo sometimes - wish the cancer center I go to had more of a support structure ....

I think I will call to arrange a meeting with my mo after the 4th - my good week before 3rd infusion on 2/7 . I have many questions that are unanswered right now .

Thank u ladies for you help - it means so much !!!

dcsandpiper

Hi Girls!

It's been a long time since I've checked in - started up back at work much more intensely and that and just keeping the house sorted out keeps me very busy. I am in awe of all of you out there who have been working full time, with kids, going to school etc! I can't believe how you do it. So far I've done 3 out of 4 TC... only 1 more to go! I'm exhausted this week - day 9 after chemo, but I've never been really nauseous or anything. The first two I was sick with a cold all the time, but at least #3 the cold is finally gone. Most of my SE's are just feeling gross, fatigue, slightly numb tongue and mouth and no taste.  I agree with who ever said I am so tired of food and liquids having no taste. I try to find things to eat that taste good and like you say - eat junk. I think I went through half a bag of tortilla chips before I finally admitted that the next chip was not going to taste any better then the last 50 did.  Argh. But them's small beans compared to some of the SEs you all are dealing with.

Big issues for me is the vein thing.  My veins are getting really messed up.  And I only have one arm to work with. They have a hard time drawing even a tiny bit of blood now. The nurses tell me that your veins develop internal scarring and that it never goes away.  Sheesh.  Wish I had known that earlier. May have opted for a port. Oh well, not too big a deal I suppose in the big picture if cancer doesn't come back.

BTW, I've been told to do lymphatic massage on my right arm where 15 nodes were removed. Has anyone else been given that advice?

Runner Girl - the resort sounds great! Protect your head!!!

Oh and I have fuzz on my head, would prefer it to be smooth and shiny, but oh well. No other area where I've lost hair except the privates. Isn't that bizarre? I'm hoping that means it will grow back quickly.  I'm going to try a super short cut, like some of those movie stars out there... I like having not much hair!

I hope you all are doing OK and not having too many bad SE's this week.  Only one more to go for me, then we can continue with the saline injections and switch out with real implants. Can't wait to get rid of what feels like scaffolding and canon balls in my boobs!

Best to all!

SharonS

Sandra - day 9 after my first AC is when everything went downhill. That is when WBC are at the lowest even with the shot. I had a temp. It was on a Sat so I called the Onc on call and they said go to ER. The ER had notes on me and I went right into assessment and then to an ER room. So I didn't have to wait in the waiting room, which would have been the worst place for me.



I hope your temp went down and you are feeling better without an ER trip.



I am still recovering from everything. AC 2 should be Feb 6, would have been #4 if I stayed on track. Just want to get it behind me at this point.



Hope everyone has a Symptom Free weekend.

Anonymous

dcsandpiper~I've been told to do the massages. Starting at the wrist, gently rub upward towards the elbow, the from elbow to armpit, then down the side under the armpit. It helps to direct the lymphatic fluids to the lymph nodes on the other side.

If you have a bmx you train the fluid to go to the groin.

She told me the whole process should take about 30 minutes. Also, wearing something that compresses like a sports bra is good.



Blessings

Paula

Sandra60

Thanks Sharon - sounds like you've had similar se's . I just wish i knew why i am running a temp - is it just from having low WBC froth chemo or is there truly an infection somewhere ?

Temp is down with ibu so I should be able to sleep .

Wishing U all a pleasant weekend !

sophiafred78

BTW, I've been told to do lymphatic massage on my right arm where 15 nodes were removed. Has anyone else been given that advice?

dcsandpiper - I have physical therapy for my arm and my PT does lymphatic dreinage amoung other things. She does some exercises to strech my arm, etc. But the massage is similar to this:

http://www.youtube.com/watch?v=X1MD6k4LunY

The difference is that in this video the "model" is not a mastectomized patient, so they are doing this only for "congestion" problems. What my PT does is gently press the nodes on the neck to "open" the compromized left quadrant to the one on the right and then start pushing the lymph towards the neck, like in the video. We can't forget to "close" it in the end.

I had a lot of problems with my arm (pain, reduced motion, swelling) and it has improved a lot since December. I definitely recommend a specialized or certified PT for someone with risk of lymphedema! 

FriendGwen

Ladies - has anyone been told to avoid hot tubs if they have had lymph nodes removed? I only had one removed during my surgery in October. None of my doctors said anything about it. I'm going to my sister's house this weekend and would love to get into her hot tub.

sophiafred78

Don't ask lymphedema questions - I won't shut up

Basic steps to prevent lymphedema:

1 - do not ignore ANY swelling

2 - no injections, IV, no blood pressure checked in that arm (I've already ordered an alert bracelet)

3 - no heavy lifting (my PT says no more than 2kg in that arm) and no repetitive movements (like scrubbing). Carry your handbag on the other shoulder

4 - No tight jewelry (watches, rings, etc.)

5 - extreme temperatures (no saunas or hot tubs - sorry Gwen), avoid too much sun on that arm and avoid having that arm exposed to a heater or a fireplace (turn the other arm to it)

6 - avoid any trauma (cuts, bruising, sunburn, insect bites and the worst for me - cat scratches!). This includes also avoiding very dry skin (put lotion on arm, specially elbow, after shower). Electric razor to "shave" under armpit!

7 - gloves for housework (never forget them when washing dishes! - protects the hand and arm from the detergent and temperature changes)

8 - I manicure at home. Never let anyone cut your cuticles.

9 - compression sleeve when on a plane

10 - low sodium and high fiber diet, no smoking and avoid... (yes, I'm gonna say it... I'm sorry...) ... alcoholic beverages

In case you're thinking that this is for who already has lymphedema, no. This is PREVENTION.

sophiafred78

Forgot one that bothers me a lot:

We can't sleep over the arm at risk. Even if our body is not "over" the arm, we can't sleep over that side. Don't know if I'm explaining right?

Sandra60

Friend Gwen -while I appreciate Sophia's info - I will tell u my story - I had my sentinal node removed and 8 other little ones came out with it - the surgeon said it was because my sentinal node was so deep - just below my armpit . Anyway - I only have numbness in my armpit - but no swelling or arm problems - full range of motion . I have gone in hot tubs since surgery ( I do live in California ). And have had no side effects . Maybe just keep your arm out when u go in and being in a glas of water - very dehydrating !

Have fun at your sister's home - all mine live on the east coast so I don't get to see very often - I'm jealous !

Nicole503

I get confused by all the lymphedema prevention tips because I had nodes removed in BOTH armpits.  4 in the right side (known cancer) and 2 in the left side (possible cancer).  All were negative.  I do all my infusions on the left side where fewer nodes were taken but I do blood draws out of both sides because I have to have them so often with the nupogen shots that I don't want to fill my "better" arm with scar tissue too quickly.  

It's a quandry for sure for those of us who had BMX and nodes on both sides.

sophiafred78

Nicole503 - I spent some time in the lymphedema section and those ladies have years of experience that I don't. What I know is that it's serious business. You should check with your doctor and search all you can on bilateral lymphedema.

I heard that it's possible to have your blood pressure checked in your thigh. As for the number of nodes, there's one lady in the lymphedema section that was very helpful to me, she's always there to answer questions, I think her name here is "purple32". She has lymphedema. If you check her stats it says "0/1 nodes". She only took one.    *Edit* she took 2 nodes (0/2)

Of course, as everything else, we can opt to not prevent something and that "something" never happens. And we can do everything to prevent it and it still goes wrong It's a choice, like having chemo or not.