Chemo May 2013

GoWithTheFlow

((HUGS)) to all of you going through chemo.  I finally took the look good feel better class two weeks ago.  I really enjoyed it and met some very nice ladies.  The make up was fun, but I learned so much about wigs and scarves.  I had been intimidated to even try putting a scarf on before the class.

For skin care, I've been using a clarisonic brush with the philosophy cleanser.  I feel like it takes the dead skin off my face and gives me color.  Moisturizing several times a day helps with the dry skin (although now that I'm two weeks post chemo, it's starting to not be so so dry).  I use udderly smooth lotion on my feet (I think you can get it at CVS, walmart, bed bath and beyond).  It's a heavier cream but seems to smooth my feet better.  Last night they didn't feel so peely/cracky.

The "ick" feeling from chemo only lasted a few days each cycle for me.  I remember not wanting to answer the phone and talk to anyone on those days.  I would nap as much as possible, watch tv, and ignore the world.  I think the mental anguish of the back and forth of feeling bad then feeling good was one of the worst parts of chemo.

It's getting very warm now.  Summer is almost upon us.  Embrace your bald head.  I think I dreaded people pitying me if I went without a wig, but I haven't found that.  People hold the door for me, engage in conversations, smile, etc.  It's much cooler and so freeing to do it.  I spent the first few weeks wearing wigs whenever my teen son was around (even in the house).  Eventually I took him to an indoor waterpark and couldn't wear my wig.  I wore a hat.  I was self-conscious.  He told me it looked great.  By the end of the day, I had the hat off too.  Then I found days where I left the house without a head covering to run errands.  Remembered it halfway to my destination.  Oh well.  

Beauty comes from inside, not from the hair on your head.  I try to look at the positives as much as possible.  My mastectomy is scheduled for the morning.  I'm looking forward to getting that part overwith, and look forward to being able to wear a tank top without worrying about "high beams" if the wind blows.  

This is a shitty, sucky disease, but attitude matters.  You are all brave, strong women and CAN do this.  

I've attached a picture of one of the buttons I made for when I went to chemo.  I hope it makes you smile.

http://i1335.photobucket.com/albums/w674/Jd_Arsen/480432_10200872755566823_462978829_n_zps05d1c94d.jpg

Pattysmiles

Vent here...



My husband informed me he is going to shave his head, just for me. I am not happy. I am not the "woe is me" type. He is. Drives me nuts. I feel his shaving his head is announcing to all his friends "my wife lost her hair", "tell me how you feel about it so I can let you know how she is dealing with it". Now mind you, people will figure it out soon enough if they see me in a scarf.

He couldn't wait for permission to go tell people I had cancer. I believe I have told exactly 5 people myself. He sent emails to all the scout families, told all the neighbors, I'm surprised he didn't rent an airplane with those banner signs!



And for the side effects from chemo he was all over me. When I was explaining to my son that the one medication was for constipation my husband was all in my face "you have constipation"? WHAT! I was so mad, I could picture THAT being broadcast next. (And no, he wouldn't have offered any remedies because he doesn't know any!)



If he didn't have such a big mouth maybe I would look at this differently? Honestly, I am always the type to see things from both sides. I'm not liking what I see on his side, or am I reading too much into this? If it were my sister that said she was going to shave her head for me I would truly appreciate the gesture (and ask her not to shave,but wouldn't be mad if she did)



This man has not read anything about what to expect from chemo. I have told him everything I know. I have sent him links. He isn't interested in a discussion, he is interested in bragging rights. I told him to go join a support group. I don't think he would do it as he would have to listen to OTHER people discuss THEIR issues, then it wouldn't be about him!



So last night I told him he cannot shave his head. Maybe in a day or so I will change my mind?

Gully

Good Morning Everyone!

To all of those losing hair: Its gets better as time goes by. Yet another sucky adjustment we must make on this wonderful jouney. One positive, it takes no time to get ready to go out now. No hair dryer, or flat iron!. Shake out that wig baby and go! I  am trying to think of it as playing dressup, although sometimes when I look in the mirror, I think drag queen LOL.....

lpc- they do go over skin care in the LGFB session. Its mostly clense, hydrate, and protect with sun screen. I did not think about having to put sun screen on top of my head! They said your scalp can burn even through hats!

Starting my first physical therapy session today post BMX...dont know what to expect, anyone have any experience?

Pattysmiles

Lorrie,

Would they consider putting in a port? Did the vein"go" because of the lack of steroids? (I don't know what the steroids do all around).

Also, they shouldn't be using your arm that had the see sentinel node biopsy. From what I've read on these boards that could those biopsies can lead to increased risk of lymphedema. So no blood pressure or blood draws or IV on that arm! I even ordered a medic alert bracelet for that!



There have been a lot of people that have talked about the port. Sounds like it is a Godsend for them. Please consider looking into it and see if it is something for you, especially after losing use of that vein!

Pat

GoWithTheFlow

Patty, I don't think I'd want someone to shave their head either.  But I think it's hard on those around us who don't know what to do for us.  Most days, I just want to be left alone.  I have one friend that I see with regularlity, she's been with me since the day I decided I needed to go to the ER because my doctor wasn't feeling as urgent as i was about the lump I found.  We get out once a week for dinner and try to go places where we won't see anyone we know.  

Is he supportive in other ways? Come with you to appointments?  Check on you?  It could be that it's just his way of dealing with worrying about you.

ReddHeddMomma

Hello all - I will begin chemo on May 22nd. I managed to get a rudimentary chemo bag packed on Monday, but due to a death in the family we are out of town and I'm worried we've missed something big in the preparations.



I had hoped to do a short tour of the cancer center today, but instead will be at a funeral. It is going to be a long, difficult day today, and then chemo begins early tomorrow.



Am hoping to get a little advice here. Is there anything you wished you had known to bring with you for your first day of chemo? Anything you wish you had worn to make things easier or more comfortable? Any advice for someone just starting down the chemo road? Already had my hair cut much shorter, but am wondering if there are other things I ought to be doing before tomorrow? Thanks in advance for any help on this.

GoWithTheFlow

I wore tank tops or shirts with low neckline for easy access to port. Other than that, nothing special.  I brought lemonade with me to drink, my husband picked me up a danish at the coffee shop in the hospital.  I brought my kindle with me to play solitaire, I never felt the focus to read.  People are in and out constantly talking to you, especially the first treatment.  Good luck and sorry for your loss.

Ukkate

Hey ladies. I'm at the hospital for some fluids. No improvement and violent diarrhea last night. . Chemo sucks.

Pattysmiles

Redhotmomma

I am sorry you have to go through with this, and to have a funeral too!



I've heard some people say to bring a light blanket or sweater as the chemo rooms can be cold. (Me personally, I am always warm, so I had no complaints, and my location offered warmed blankets!)



Pack a snack, sandwich or other food as you might be there for a long time. Mine started at 10:00 and lasted to 2:30.



Bring lots of water to drink or other liquids-purpose is to flush out those toxins. Also hydrate earlier I. The am, makes finding those veins eaiser.. I thought i could refill in the hospital tap water, it was GROSS!



Bring a book, laptop, DVD player, iPod or those types of things to keep busy. My stack of unread magazines at home could get me through 20 chemo sessions!



I brought my own cooler bag, filled it with frozen veggies and baggies of ice cubes to ice my fingers and toes to ward off neuropathy. But, keep in mind that some recommend against doing that!



See if your location has ice chips, or bring ice/icee. If you are getting taxotere you will want frozen stuff in your mouth to ward off mouth sores.



I think that was it on what to bring, checkbook for the co-pay? Lol



As for home I had on hand:

Prescribed steroids

Claritan 24 hour -for day of Neulasta shot and 7 days following

Prilosec for heartburn (and I needed it on the day after chemo!)

Nausea meds as was prescribed and filled prior to chemo (and I did need them)

Stool softener-took one am and pm

Miralax- took recommended dose in the am just for a few days til off nausea meds

Biotene mouth rinse, used after every meal to rinse out mouth for first 3 or 4 days

Biotene gum, used to remoisturize my mouth not used too often

Baking soda- used with salt and water as a mouth rinse when felt strange

Benadryl-did not need

Acidophilus -did not need

Eye moisture drops-did not need

Water or other liquids...drink , drink, drink, flush out those toxins! I had one of those giant Poland spring waters next to my armchair when I got home and just kept refilling my glass of water....later the day 2 or 3 added some iced tea mix to my water or tried other things with flavor

Baby wipes ultra sensitive (or personal wipes) to wipe with after toilet use...clean off those toxins, used for first 4-5 days

Bottle to cleanse self (did not have, but read about) similar to like after giving birth, to squirt on yourself as you urinate to help rinse off those toxins as you go.

Plastic utensils as things get a metalic taste.
Thermometer- to check your temp,nthey will tell you what temp they consider high and to call them (listen!)
Tissues (preferably lotion ones). For runny nose that is bound to happen



I put the meds I would use daily on the kitchen table in a bowl.

The other "back up meds" were in a shoebox type container on my living room table.

Was very convenient to have like that so I could put away for next time! (Or if had people in!)



Also used a check off list to make sure I didn't forget to take am/pm meds.

And my husband could see what I needed in the am by looking at the list (was too tired to get out of bed one morning, so mumbled for him to being me my meds and he knew exactly which ones.)



I think that is most everything.

Pat

Edited to add thermometer and tissues.

Pattysmiles

Ukkate,

Hope the fluids will help.

Yes chemo does suck. Sounds like you have it the worst out of all of us. I wish we could all give you our hugs and our healing prayers would work!



Pat

Gully

So sorry Kate! Sending hugs your way! Hang in there!

myboby123

had second cycle of chemo yesterday.



i was hospitalized twice during cycle 1 (of AC).

this time round, i will be getting IVs daily. both MO and NP said my SEs(chemo induced nausea and vomit) from the last round is one the worst they have seen).



have a good week everyone!



Eleanor

ItIsWhatItIs2013

Vent away Pat!

That's why we are here! For support from those that know what we're going thru!

& yeah.... No pokes on my left arm period! We'll have to see next time what my options are...



Now what to do about the hair.... Ugh!



Happy thoughts all!

Lorrie

Pattysmiles

Lorrie,

Based on what I have read about radiation (I thought I would be doing that, but changed my surgery which changed that piece) your sister in law will find out why you are so tired! Not that we would wish that! Radiation isn't a walk In the park, but those that did chemo first usually seemed to have it "easier" as they had already been through a dreadful piece of treatment. Those statements are based in reading the radiation pages in this forum.

I find it hard to believe she is naive about your treatment. Once the words "it's cancer" came out of my doctors mouth I hit the Internet. I wanted to know EVERYTHING. I do realize how uneducated i was about this before I had it, but that is also the case for every other disease I don't have, or a friend doesn't have. It is hard to sympathize (or is it empathize?) with something you do not have knowledge about. Clearly she must have her head in the sand! I told my husband that if it were him with some diagnosis I would be looking it up to see what could help. I get some people aren't like that.



Eleanor, I hope your second round is way better. Glad your doctor is being proactive!

Pat

ReddHeddMomma

Thanks so much for the responses gowiththeflow and pattysmiles. Really helpful and very much appreciated! Patty, that list is wonderful - thank you so much.

OceanWarrior

Hi everyone,

Busy week for me.  MO visit on Wednesday then 1st Chemo on Thursday May 23.  

ReddHeaddMom - good luck with your first cocktail tomorrow and sorry for the loss in your family.

Thanks again to everyone that contributes to this thread and the boards.  Really so helpful to get some real information from others that have walked this journey or are about to just like me.

Going shopping this afternoon for some supplies - finally, our house will have a thermometer!  I have lots of scarves ready to go but thats for at least 10 days down the road.  One step at time.  

Anyone else starting on Thursday of this week?

ItIsWhatItIs2013

Eeeek!

Apt. @ 12:30 to get buzzed! I scrambled this morning driving around town to pick up a couple of hats, Im finding my hair everywhere but on my head!

Cried most of the morning about it, but I think i got it all out! Haha

Curious what my hubbys reaction will be when he gets home tonight.....



Thanks pat for the pep talk!

I am so appreciative of this forum!



Happy thoughts!

Lorrie

Pattysmiles

Lorrie,

I had an appointment at 1:00 lol!

Took my 14 yr old so. With me as he was out of school for getting braces.



I am not happy. The woman wouldn't listen, so she went shorter than the Pixie I did last month but wouldn't do super short so I could just gel spike the top. She also told me i wont lose all mynhair. Why don't they listen! She also told me all the remedies for cancer (followed by "I'm not a doctor though). If she knows so much I should have asked her for the winning lotto numbers. This was just a local place, not the stylist I drive 1 hour to get to,she has been doing my hair for 25 years (did I just say that! Lol) and wouldn't give me any nonsense remedies and she would have cut it how I asked!



Sigh.

I guess my daughter will be happy! Lol



Heading to the look good feel better program soon. Hoping to learn whatever I can- wig care and makeup. I will be taking a scarf and a beau with me. Regarding the beau, I need to look up how the other styles are to wear it ,Maybe someone there might know.



Pat

shimmy

Aw, Ukkate, I'm so sorry to hear how terrible you are feeling. I hope the fluids help and that your doctor can find something to get you through the next treatment in better shape.

Deb, I know what you mean about the Ativan. I feel like I should be able to sleep without it, but I just don't get a good sleep without it. It's harder to get to sleep and harder to stay asleep.

ItIsWhatItIs, 5/6 is my mom's birthday too Congrats on the birth of your grandson! You must be very excited.

My biopsy results came back negative. The Disneyland trip was a success. It kept my mind off of test results and cancer in general and instead we had a fabulous time. It wasn't even that crowded.

lpc

My gosh you ladies have been busy while I was at work!



Welcome reddhedd sorry for your loss and that you have to be here. Lots of info and comfort to be found. I don't think I could add a thing to

Patti's list except for the xanax I needed to get me there.



Kate I am so glad you finally went to hospital and are getting fluids. Hope it makes you feel better soon. Let's hope doctor finds away to make next round better!



Patti my husband wanted to shave his head too. I forbid it. I don't really want to see him bald and it would only serve to remind me of my cancer. Wig is reminder enough. My son did shave his head before my 1st chemo and it was sweet but have asked him not to to it again.



I am having problems with overly solicitous people. There are times I just want to be left alone and not talk about how I am feeling. I still need time to get a grasp of this crap and process my feelings. And btw. I am not on my deathbed so stop treating me that way!



Hope everyone has a good night.



Lisa

ItIsWhatItIs2013

Shimmy, yay on the results and the great time at Disney.... You DID get some Minnie ears right? Lol



Pat, sorry about the hair dresser! That sucks.... I was lucky that my daughters boyfriend's mom has been doing my hair.... Today I told her to take down to a zero.



It oddly felt like a relief ... 1 I decided when to go with no hair and 2 it's done and don't have to deal with it coming out in clumps like last night and this morning... It's a weird scary feeling when we don't feel in control...



Kate, I'm so sorry that this has been so rough on you! I know it's hard, but remember why we are all doing it....



At my most angry time I was like.... I didn't feel sick when I was diagnosed! Now to fix it I have to feel like shit! It's messed up!



Happy thoughts!

Lorrie

julie0957

Hi!  I started chemo - TC - May 3rd. About to have my second of four treatments this Friday, May 24.  That is, if my white blood cell count comes back!  It's still pretty low........

Also, today is the day my hair gets sheared!  Have been dreading it for weeks and weeks, but once you make the decision to do it, it feels better, truly.  It's looking pretty bad at Day 18 - really the first day it's looked this bad.  

I work full time at an office of mostly men, and have been dreading the first day I show up with my wig - even though it's ADORABLE.

Would love to talk to anyone else going through this right now. Best of luck to all reading this.

julie0957

lpc - I know what you mean about people - they mean well, but really - I don't want sympathy!  I'm fine - this chemo is just an added insurance policy the breast cancer never comes back.  I'm with you - I really don't want to talk about it ad nauseum, just go about my life as normally as possible.

ItIsWhatItIs2013

Gowiththeflow,

Best of luck with surgery & speedy recovery! Thoughts will be with you!

elkatho

Shimmy.....congrats on the test results!



Redheddmom..it's unfortunate you have to join us but you have come to the right place..:)



Gowiththeflow...sending you peaceful thoughts for a good night's rest and s smooth surgery. I will be thinking of you tomorrow.



Pattty....I have say I was lol when you were venting about your husband.....so much sounded familiar. My DH was telling friends,coworkers, etc before I told my siblings. I think they mean well but forget to think before they do. Typical in many areas.



My HR rep informed all my coworkers of my cancer on my behalf while I as off last week. Did not want to have to explain over and over again why I was bald or wearing a wig. Went back to work today...so many had big smiles for me....perfect. The first lady I ran into was drilling me...I was like can I at least punch in and get settled. So annoying.



One thing I hate is when someone finds out you have breast cancer they want to tell you all about everybody else they knew who had it and what they went through. I am sorry but right now I want to get through my own treatment. Smile and move on:)

elkatho

My nurse did not go over anything regarding eating while treating so I set-up an appt with a nutritionist at the cancer center. If there is anything you want me to find out let me know. I meet with her Thursday afternoon.

MomofSam

I echo the "Look Good Feel Better" comments.  I went last night and I'm really glad I did.  It was nice to be around other women going through something similar.  Plus, I loved getting to put on the makeup and stuff - best of all, I learned how to do my eyebrows (something I knew nothing about).  Totally go to a session if you can - they are free!

Pattysmiles

Elkatho, maybe your HR needs to send an informational email out that says. "Elkatho does not want to speak about her cancer! ". ...just a thought! I'm sorry you were drilled, perhaps there is a bright side? Maybe you educated her? (Ok, maybe a stretch, but you never know! Lol)



Julie and lpc...I agree, I'm good, leave me alone! Lol. This is not who I am!



Shimmy, glad that's negative and Disneyland was good!



Went to my second LGFB workshop. Brought the makeup kit along with me from my first time at a different hospital. This one was nice too. The cosmetologist had had a masectomy, so she knew where a lot of us were coming from.

I went with the intent to exchange the wig I had gotten from my other session and they let me have a new wig AND keep the other wig! They also had a bin of gently used head scarves, hats etc, so I picked through and picked out a few things...one of which was a nice cotton head covering, figuring to keep my bald head warm at night when I am cranking up the air conditioner! The other was the softest winter hat ...I HATE hats, but am calculating I will still need head coverings etc Into the fall/winter.

I also met a nice woman from my town who has a similar diagnosis, same chemo treatment(different hospital/center) and was very down to earth. We exchanged email addresses, though the likelihood of us getting together is slim it is nice to have another source to refer to.

Everyone was thrilled with all the info I shared....thought I was so well informed about a number of topics. I told them I have learned so much from these boards and the people here and HIGHLY recommend they come see what they can learn.



Thank you everyone for sharing your experiences. I have truly learned so much from my sisters who have gone first in this battle and have passed along their wisdom. I look forward to learning so much more and in turn will continue to share that knowledge.



Stay strong!

Pat

Pattysmiles

For those who might have missed it, here is a website to get a FREE headscarf.

You get to pick which one you want. It is VERY nice, though I have a "large" head, so mine is the tiniest bit bit snug.





http://www.goodwishesscarves.org/



Pat

Ukkate

Hey ladies. I'm back in the land of the living!!! I feel so much better. All the nurses remembered me today. I actually have a radio commercial playing locally here and the pharmacist came to see me and til me he heard it over the weekend! Anyway, I'm so thankful to feel normal again. I guess next is my hair to deal with!! I have no wig yet and no time to shop with all the bat mitzvah plans!!! Thanks for all the good wishes xxx