January 2013 chemo group

More questions from the kid tonight. He asked if I felt weird with no hair, if my TX hurt, when is my hair coming back, how long do I have to have all this medicine, etc... He wanted to know if I was scared. I answered all of his questions as best I could without scaring him. The last one was 'yeah, I'm scared sometimes'. ugh.

Now this is what I was thinking in my head and didn't tell him:

Yup kid, I am scared... I am scared everyday. I'm scared that I might not live very long, that you might grow up without a mother, that I might be really sick for a long time, that I might never hear the 4 words we all want to hear YOU ARE CANCER FREE. Holy shit kiddo, you have no idea how scared I am.

I am tough as nails and a crazy strong person. I hold it together and I don't ever flip out... until my 10 yr old asks me if I am scared. He is my little light. He is the best thing to ever happen to me.

Here we go- Round #2 ding ding ding... I'm ready to fight.

Skigirl, what an incredible post! I have children and feel complete terror every time I think about this diagnosis and its unknown future. I have round 2 of chemo in the morning which only adds to my fear. I realize I need to stay strong however sometimes for me, that is easier said than done. Best of luck tomorrow!

Donna

Hope49 - regarding the olive oil:  I did start it day 1 and continued for at least a week.  I think that if I wanted to be *really* sure, I would do it continually.  But as I said, so far so good!

Polly

Thanks so much, ladies.  I LOVE the toque...i think i should make the Canadian Ninja my avatar...and the ninja head covering will double to keep me warm once the bald sets in.    Thanks for your encouragement and support...it means a lot.  Still doing my Snoopy happy dance.    Shan (the Canadian Ninja)

Skigirl,  I really appreciate your conversation with your son.  Especially because my kids are all "yeah, yeah, it's all fine", and so I'll never actually know if they are."  (Actually, I think the fact that they know I had the Hodgkins makes it easier, because they have always known that, so thought of cancer as a hassle, not a death sentence.)

Oliverhog, I still have my spleen (because I had chemo then, but didn't have radiation), so perhaps that makes a difference.  And I'm very glad to hear there is a way to "reduce the Neulasta", because someone implied there's "only one dose", but that makes no sense.  I see my MO on Tuesday, prior to getting round two, so I can ask him then.

TGIF Everyone!!!

Lots to catch up on all the posts from yesterday...

So sorry to hear that some of you are having a bad week...you are all in my prayers everyday and I know better days are ahead for each of you, we'll get there, one day at a time!

gd2uz - great news about getting your drains out...isn't that the best feeling?  I hated dragging those things around like udders.

Zorina, Sheryl and Nikki, I think you are making the right decision about work.  This is your time to HEAL and you need to do what feels right for you.  

Colleenkelly, One of my bmx incisions wasn't healing as fast as the other, no infection, just wasn't completely closed up so I did get stiches and within a week it was all sealed up and no stress on it during my PT

ablydec, after my first Neulast shot, my WBC reading was 32.  Today when I went back, it was in the normal range at 7.  I asked the nurse if I have to keep getting it and she said yes but I am going to ask my MO also when I see him next week.  I know others who only got it as needed.  I didn't really have any bad reaction to it just one day my lower back hurt (even though I did take the Claritin) but it went away with a few Tylenol and some walking. I'll let you know if I learn anything new from my MO

Rhonda - way to rock the cold caps!  Like Amrdbit, I am also a little over 2 weeks post first treatment and so far, so good!  My hair is stringy and oily due to the limited washing but it's still in tact  My previous worst hair day is now what my best hair day looks like, but I'm getting used to it and in the end, my hair will actually be in better shape I'm sure with no blowdrying or highlighting for awhile.  FYI - you can also pop a cap or 2 on between treatments, right out of your freezer and it's supposed to stimulate the new growth.  

and last but not least, skimommi I almost lost it when I saw the picture you posted!  OMG!  I guess I'll have to rethink my new look

A great weekend to all, with minimal SEs!

O.K.  So I lost about 90% of my hair Wednesday night, which was day 13 status post TC #1.  I cut the remaining few longer strands and had like a boy's hair cut for a day.  A bunch of the rest of the 10% was falling out so I had my husband buzz my head.  While he's buzzing I turn and look in the mirror and burst out laughing because I immediately thought of an old turtle head.  Now that it's off I guess I'm O.K. with it.  However, there are enough tiny little buzzed bits that when I tried to pull my hood up it was sticking to my head like velcro.  I guess that'll keep my hood from falling down!

My son came home after I wrote this post.  He looks at me and says it looks funny, but it "doesn't look weird."  Not sure what the difference is.  Then he wanted to feel it.  He rubbed my head and laughed.

Skimommi, I want those eyebrows!

NikkiLiz, I feel so bad for you that you’re going through this on your own.  I would definitely ask my mom for help.  If you or your mom belong to any type of group, church, book club, anything, surely some of them can step up to the plate.  I spent a good portion of the morning with a Eucharistic minister from my church.  We had each other in stitches laughing so hard and I really need that like a lot of us on this site do.  If we lived within fifty miles of you, I’d send my husband over to help you.  Are you on facebook?  When I was first diagnosed, the local park district wrestling club parents organized an online take them a meal thing for us.  We had people bringing us dinner almost nightly for almost a month.  One of the members of my church picks me up and takes me to the adoration chapel to get me out of the house and she’s cooked dinner for my family like four or five times, maybe more.  Even if you’re not a member of a faith based community, contact a church you think you might be interested in and speak to someone there.  Even if the people who come visit you are strangers at first, they don’t stay strangers very long.  One of the ladies from St. Damian’s prayer group was a hospice care provider.  These people are VERY compassionate. 

LeeA, borrow crap ass feeling.  I’d rather no one had to have that feeling, but it’s yours from this day forward.

I talked to my MO today.  Actually I seem to talk to someone from the office once a day recently.  They're constantly checking on me.  Someone in this group, I think, expressed concern about recurrence numbers.  My MO told me today that Europe treats most of its receptor positive BCs with hormones only and they seem to do fine.  She would be O.K. with me going that route but said that it might increase the likelihood of recurrence by 10% over chemo then hormones.  She also explained to me that that cells in my axillary nodes were pretty much identical to those in the tumor - my estrogen receptor positive status was present in 60% of the tumor and progesterone receptors were present in 20%.  The Taxotere and cytoxan work better against cells that aren't estrogen receptor positive.  That's apparently why I'm getting the chemo.  Once I'm finished with the chemo, I'll get the hormones to cover against recurrence of receptor positive cells.

As for the Neulasta, the MO gave me 6mg last time.  She is going to reduce the dose to 3mg for my next treatment.  I may not be getting my next treatment on schedule.  She wants me to do a better job of eating and getting a bit more exercise and wants me feeling better.  She said that studies indicate intervals of four weeks doesn't seem to impact recurrence or survival. 

I had my first Chemo treatment yesterday and all was well.  Still feeling like a champ so far with no SE's as of yet.  Hoping to keep it that way.  Went in today to get my Neulasta shot.  I am working with the pharmaceutical company to get those shots approved to be able to get them so I can just get them at home.  I live almost an hour from the hospital and it's a pain in the ass to drive all that way for a two minute shot.  I called and got the copay and it is $150 for all of the shots for the whole process.  To me, I feel it is worth it.  My sister in law who lives across the street is a Medical Assistant and has agreed to give them to me.  I did the whole thing yesterday, got to the hospital at 7:15 for port a cath placement, then had my first treatment immediately following.  No issues at all.  So glad.  We will see what tomorrow brings. 

chgoqernini - The port is so simple and the placement took 20 minutes.  I have crappy veins as it is so I wasn't really given an option and I'm so glad to have the port.  With the chemo and then the herceptin for a year this will be a life saver for me. 

Nikkiliz - My friends and family contacted me yesterday and today and of course asked how I am and if I need anything.  At this point, I'm just fine.  What I did though is remind them that from everything I've read the SE's don't start until day 3 or after and if they would be so kind to check on me later, I would greatly appreciate it.  I don't think that everyone understands the process and education is key.  I can honestly say before reading and researching everything, I didn't.  Ignorance is bliss as they say. 

I have a cookbook called Eating Well Through Cancer by Holly Clegg.  It has different recipes for different issues.  If you have constipation or diarrhea, or anemia, there are different ones.  There is a section for day of Chemo and day after, plus each section has a description of why you get these symptoms and the best advice to help control them.  Pretty interesting really.  All of the recipes seem really easy too.

I appreciate all the helpful hints and tips.  This is such a fasinating group of wonderful ladies.   

A bunch of my friends at work have deemed Fridays "Fight Like a Girl" day.  Everyone wears something BC appropriate and our gift shop in the hospital carries a line of Fight Like a Girl Tshirts and socks and cups, etc.  so alot of us have tshirts and we wear them under our scrubs.  We know they are there and it feels great to have such an amazing support system.  I really want to try to work when I can during my treatments.  I love my job and I love the people there and it is part of my "normal" routine.  I feel like if I stay home, I will go completely crazy.  I am realisitc about this though and if I feel crappy, I will most definately stay home.  It towards the end of treatment I'm too tired to do it everyday, I won't.  But at least for now, I feel it is important for me to go as much as I can. 

Have a great night everyone and I'll let you know how things are tomorrow.  Fingers crossed it is just like today.

Nikki I'm sorry you are feeling this way today, hopefully tomorrow will be better. I have a quote for this year "people are just dumb". sometimes they just don't any better. your mom loves you and I bet it comforts her that she can comfort you, that's what they are for. I wish I still had mine. but hold close the ones you can really count on, even if it is just one or two. others care too but unfortunately people get selfish and don't understand or know the right thing to do. I just started tx so don't know when I'll feel bad yet I just to know the right people who care about me and the ones I can really count on.



I hope this helps a little bit.



tammi

Nikki, so sorry you are feeling so down. Hugs to you. Colleen

I have mixed feelings about what I am about to post.  I have really good news, but I want you all to have really good news too, and you will, but different and later I guess. Anyway, I went to see the MO today.  He told me that although my cancer was triple negative, it was a very rare cancer, called adenoid cystic carcinoma, and is one of the least aggressive breast cancers.  He said that they don't do chemo, and obviously no hormones since it's triple negative, and that the treatment is surgical, which I've just had. My nodes were negative, so they are not going to do chemo.  I am very happy about this.  This is the first time in my life where I have actually been the one to receive the good news and not everyone else, but I wish the best for all of you, and you will all be in my prayers.

On another note, the deep hole that I have to have packed every day now by a home health nurse must be acting up. I asked for antibiotics when the surg. onc. debrided and packed it yesterday, and I asked for antibiotics today at the MO's office. The answer was no both times even though  my temp at the MO's office was 99.5 when I got there, and 99.6 when I left.  Tonight it was 100.1.  I called my surgeon immediateley and told him I want antibiotics. I kind of had to insist, and he called them in.  What...do they want to wait until they need to hospitalize you???  Anyway, supposed to start work again Monday, leaving early every day for wound packing.  I may revise my plan. Will see how it goes over the weekend re: fever etc. 

God Bless you all, I will be checking in to see how you are doing and keeping you all in my prayers.

gd2shuz - That's great news!  And a basic ditto to what SeattleMama said -  any and all good news is heart-lifting!  

And I don't blame you for pushing for the antibiotics.  You do now want to end up with an infection that requires more involved antibiotics.  I was on IV vancomycin and it was a pain in the behind (home nurses, new IVs every few days, etc.).  You are your own best advocate in all this!