Starting Chemo, November 2013 Group

10 inches so far, and it is still coming down.  I have decided to stay in bed, so tired.

Paulette, I prayed for you last night and again today.  

Phebe, why can't you teach in a classroom when you go back to work?  Is it because of the radiation or Herceptin?  I was planning on going back during rads and I have 30+ kids in every class. I haven't been told I can't, but  now you have me thinking. I know I will be tired at the end of the day, but I can't think of any other adverse effects.  

Lisa, I keep thinking of anyone trying to cast out demons while you are hunkered down under your blankets and you coming out roaring.  Made me laugh.

Be well, everyone.

Port removals are usually done with out anesthesia, just local and out patient. Mine took all of 15 minutes to remove.  I didn't go under to have mine put in(my choice) so out was a piece of cake.  They stitch you and off you go, walk out and can drive yourself home if you want. I didn't even have a follow up with the removal.  I am now on #15 Rads, so if any of you ladies getting ready for that let me know if you have any questions.

I can say it is very uneventful! And I find it quite relaxing getting the treatments. Also, prior to RADS I was having terrible lymphedema from node removal. Fluid retention under the arm, I guess I have been babying it since BMX in June. Well, the way you have to lay with arms above your head for 10 mintues everyday has released the fluid buildup under my arm and now it feels so much better. The stretching must have helped circulate the fluid!! That is a positive thing I have taken from RADS so far! But let me know if I can help in anyway to ease your worries!

smrlvr I'm now close to retirement and teaching in a classroom setting is getting way too much for me. My boss wants to put me in a resource room. I took a year off from work so I will start in September. She said it will be way too much for me to be with kids all day long. I won't be working with an assistant. 

I'm hoping that this chemo is not too much for me

Hi everyone, 

I've been reading all your posts but haven't been too active myself lately for no particular reason.  I'm sitting in the BGC right now getting my last chemo, hopefully forever.  I think I've felt introspective and pensive a lot recently, maybe because I'm transitioning to the next phase.  

I had a long and intense day yesterday.  I started with labwork and my MO appointment early, and ended with meeting my RO.  I went into the appt. with my MO armed with studies to justify why I was begging to get my ovaries out.  I hoped mostly that she would agree or, if not, that she could make sure I understood why that was not necessary.  I went into the appointment with the RO asking for as much radiation as she could give me.  I just want to make sure this NEVER comes back and, if it does, I want to know that I did absolutely everything that could be done.  The most.  The hardest.  Extra, please  Nothing is too extreme, and no percentage improvement is too small.  

Well, reason and reality bit me and bit me hard.  My MO -- love, love, love her -- explained very well why Tamoxifen is effective for my cancer and that I need its benefits for my bones and my high potential for osteoporosis.  She wants me on endocrine therapy for at least 10 years, and there aren't good studies yet on the safety of taking aromatase inhibitors for that long after forcing menopause.  I am so grateful I understand and agree.  First lesson of the day: trust actual MDs more and my reading of Dr. Google less.  Also my first lesson of the day in perspective.  Yes, this fire is in my face and I want to extinguish it forever.  But it makes no sense to put it out with such extreme measures that I jeopardize my future health.  

My RO appointment reinforced both those lessons.  Twenty-five radiation treatments is enough; I don't need the 30 I'd read about.  My cancer was on my left side.  It (stupidly) never occurred to me to be worried about radiation and my heart and lungs.  I was just so hell-bent on wanting lots of treatment.   

So, I got appropriately reeled back in by two very smart and kind doctors.  

(As an aside, I know the RO and her fellow had presentations they needed to make to discuss radiation.  But, honestly, I didn't need to hear the nitty gritty of my pathology report in order to convince me that I needed radiation.  I went in there asking for one more week than they're willing to give, for crying out loud!  I don't need to hear how scary my number of lymph nodes is or how terrible extranodal extension is!  I KNOW!)  

So, now I'm pondering the next chapter in all this and what life will be like after that ends, what my new normal will be.  It's finally cloudy and rainy here -- a good thing for our drought for sure, but it makes me sort of quiet and pensive.  

One thing that's been on my mind is all of you and how absolutely grateful I am for all the comfort you've given me.  I feel that I've gotten far more than I've given.  That's a running theme with me; I'm not fishing for assurances, just stating a feeling that recurs in most of my relationships.  (I have abandonment/attachment issues that could keep a psychiatrist busy for years!)  Please know that I am trying to be for you all what you are for me.  I could not have come this far on this journey without you.  

XOXO

This is my wig and it's not itchy 

Hey Ladies -

Bec - Loved your post tonight.Congrats on the last Chemo!! I totally get asking for more than is necessary, and have been known to grill my extremely educated and very capable Dr's based on my Dr. Google education. Oh,  the hubris! But I also don't want to do this again so take an ovary, or two, give me a few extra drugs, or Rads, I really don't care. Fortunately my good Dr's also explain why doing such self harm is not necessary, and that there is light at the end of this cancer tunnel, because they have seen it. I am so glad to have such good medical care....For that I am truly grateful.

Wallymama - Sounds like your turning the Chemo corner. I remember reading someone's post a while ago how they read Taxotere/taxol was easier than the other stuff, only to kind out it is just a different hard. I so agree. It is difficult to feel OK.. I hope you are finding some comfort.

Phebe - Great wig! It is so great you are working thru this and they are making some accommodations for you!

Question - This is a wierd one - While on Taxotere have others had strange stuff come out of their mouth while brushing their teeth? When I brush, it looks like dried blood that I spit out. My gums sometimes do bleed but this is red brown stuff. Very strange, so I was wondering if it has happened with others.

Well, I am pounding the drugs to me. Decadron, Predisone, Lyrica, Tramadol, Tylonal, and the usual sleeping concoctions. I hate drugs of any kind, but have succumbed to desperately wanting to sleep a full night. My joints are all very swollen and I have a lot of  bruising. Anyway, my poor DH is 'feeling' my pain and has yet to react to my not so great mood. He is such a good man....

It is snowing here, very pretty, and my northern dog loved his walk this afternoon. His snout was full of snow and he pranced as he hauled half a tree that had fallen into our yard somehow expecting me to throw it for him. It reminded me that it is the still the little things that make me smile.

Thinking of you Paulette.

Hi everyone...I'm still here reading all the posts and wishing you all comfort & peace.  All of you are in my thoughts and prayers.  Forgive me if I leave anyone out...it's not deliberate...I'm having an AWFUL day today   Have SE's still from last T&C.  Just feel SO SO SO tired, confused, weak, with bad abdominal and side pain, just general malaise and discomfort. 

Long-story-short...I fell out on the road tonight in front of my house while running to get the snow plow-guy across the way to plow our driveway.  Saddest thing was my layered turbans flew off when my head & body hit the ice & snow.  Broke out in tears, tears that tumble from my eyes these days because my lashes are going (mostly gone).  Neighbor, Dave across the street (who was being plowed) comes runnin' to fetch me, takes one look at me (he hasn't seen me since my diagnosis) and says, "Toni...OMG...I had no idea things were so bad!"  IT WAS AWFUL!  I grabbed my turbans out of the road and placed them on my bald head...burst into tears, crying...it was awful.

Cannot write fiction better than this!!!  But I'm just rollin' with the punches and gettin' through things these days...so much is happening, I cannot analyze every reaction I'm having...I'll make myself crazy (well, crazier than I am already)...sigh.

So much is happening, I feel like I've lost track of things!!!!!  Some days I cry & cry...some days, I am better.  Accepting there are MANY elements of this ordeal that I simply cannot control...must turn things over to fate and God.

Based on the look on Dave's face, I thought "Good grief...I must look awful."

My bottom lashes are 75% gone, my upper lashes are hanging in but 50% gone and my eyebrows have thinned.  I'm totally bald...I actually think I frightened my neighbor Dave and my (other) neighbor Dave (who was plowing).  I was even wearing pajamas!

So, shocked Dave assisted my bruised and snow covered battered body into the house.  It was awful, it really was.  Almost so tragic, it was funny...  Now I gotta deal with all the bruising on the left side of my body, where my body made contact with the ground.

lisa...I hope you feel better.  I'm sorry you are going through a rough time.  I feel I've been in a rut throughout chemo...it's one reason I refrain from posting...I do not want to bring others down with my woes.  I think sadness and depression are understandable for all of us.  This breast cancer stuff is difficult

bec...great to see you back here.  Everyone here DOES give in their own unique way.  Don't worry about a thing...just feel better.  Sounds like you gained a LOT from your last appointment.  I'm with you about doubting how important it is to know every move & permutation about my diagnosis & treatment.  The surgeries are pretty standard, as are the treatments (chemo & rads).  I just want to do the MOST I can do right now (without over-kill) based on the information I have at this point in my life.  I cannot continually worry about what tomorrow might bring, right?  Hang in there!

Pat...such a hard question to answer.  IN all honesty, there are days I wish I knew a lot less about cancer and everything that goes along with it.  It is getting better but erasing my Hospice memories has been tough...so so difficult.  I think, too that my nursing background has made me over-think things too much (especially worst case scenarios).  Not good for a personality type like me!

amazon...main differences with the two radiation types are 1) time (duration of treatments), 2) amount of grays (radiation) delivered, 3) potential damage done to underlying organs, tissue and bones, 4) damage done to skin

phebe...love love love love your new wig!!!!  I think it looks WONDERFUL on you...you look great with it on, you really do!  I love it!  And I think it is a good thing that your school is trying to accommodate you and work with you.  I'm sure you are a wonderful teacher.

jab...I'm with you about managing the pain and discomfort, and making ourselves as peaceful as possible throughout all of this.  Doubt any of us are seeking to become active drug addicts...we are doing what we feel we need to do to get by.

wallymama...feel better

smrlver...you sound well...we both are getting lots of snow this winter, aren't we???  I didn't mind it much until the tumble I took today-lolololol.

(((audra)))...you are always in my thoughts...continue to feel well

Thank you ladies for being here...

I'm concerned to hear more from Paulette...worried about that girl.

Good night for no all!.

smrlvr, quirkygirl...thank you for your comments and concern.  Ugggghhhhh...yes last night was awful, it really was.  Never felt so humiliated and ashamed in my life.  Oh well...I'm sorta speechless these days.

smrlver...most times it takes a while for an antidepressant to kick in and start working.  With that said, I completely understand how you are feeling sad and depressed.  Here it is months out from my diagnosis and I still have days where I sit and sob about it all.  The tears and sadness seem to come from nowhere.  It's a hard battle with lots of fears and unknowns.  I have always been much of an intense person, one who does a lot of worrying and I know I can push realism and fatalism to extremes at times.  I have to work hard to fight the urge to focus only on the negatives.  It is a real battle for me, so I totally understand.  There are positives but like you, my fear about the future oftentimes gets the best of me. 

PM me, if you'd like and if you end up alone and feeling lonely this weekend, I'd love to give you my phone number and we can chat.  Hang in there.

Good morning ladies,

Paulette, I hope you're getting clarity on what's going on.  Please know I am sending positive thoughts and hugs throughout every day!

Phebe, count me in the we-love-your wig club!  It looks fabulous on you!

Tonilee, I'm so sorry you had to go through such a harrowing experience!  It just isn't fair.  That redefines insult to injury, but go you for being such a trooper.  

Lisa, I'm glad you're starting to feel better.  As always, thank you for sharing your insights on the world with us.  Your posts are always comforting.  

JAB, the stuff coming out or your mouth sounds the same as what comes out of my nose.  Maybe it's the same stuff and yours is travelling to be a postnasal drip muck?  I've had this since midway through AC and dry house air doesn't help.

Audra, I'm jealous of your port being out!  Orders are in for mine to come out, but I need to find out whether it could or should come out during radiation.  I might have to wait until mid-April.  I've been referred to Interventional Radiology too.

Wallymama, it sounds like you're doing better.  I hope this means you can have a nice week+ before your next treatment.

Smrlvr, re going back to work during rads -- It sounds from what I've learned that if you aren't going to be wearing a bra, it should be fine.  My MO said that lots of her patients go back during rads, especially part-time workers.  I emailed my RO asking when I would be comfortable enough to wear a non-underwire bra with silicone prostheses.  She just emailed me back that 1 1/2 months after rads should be good.   That would put me in mid-May.  I wouldn't be comfortable going back to work without my foobs, so I'm wondering if I should just wait until the new school year starts in August.  I have to deal with HR anyway on preserving my actual job -- my position is guaranteed through April 10; after that, a job at my classification in the district somewhere is all that is guaranteed without someone pulling strings.

Amazon your photos are beautiful!   

Ellen, your church story still has me laughing...

Amazon, you articulated how I have changed very well...thank you!  I still get a momentary shock when I see myself in the full-length mirror after a shower.  It's not how I think of myself, even six months later.  (As an aside, am I the only one who still bends over in the shower so my hair won't get me all wet while I'm drying myself off?  Most times I still bend over to wrap my hair up in a towel too.)  I too am much more appreciative of kindnesses.  Everyone has a burden they are dealing with, and I am much more patient and empathetic than I ever was.  Those are good things.

Lonnie713, welcome!  Are you having your ovaries removed too?

Virginia, how are you doing since your infusions are done?  I'm so grateful to hear your assessment of Tamoxifen.

Veronica, congrats on being done with chemo!  I miss wine too, but I found it easier than I thought it would be to go from a glass or two with dinner every night to maybe a glass or two with the nice dinner we fix every Saturday night.  Maybe it's because I told DH that if I'm rationed, I don't even want to see Charles Shaw in the house!

Pat, what's radiation like?  Are you doing okay with it?

BigT16, fingers are crossed that you survive layoffs.

Like a lot of others, I'm much more pensive these days about what's been going on and the future.  I don't know why I'm sleeping better at night, because that's certainly not like me and I can't believe Mirtazapine works THAT well, but I'm grateful.  I knew I'd be getting more anxious as I approached treatment ending.  I want to try to focus on the thought that treatment isn't actually ending; Tamoxifen is not only a treatment but a very effective one at that.  And, it's the stage of treatment that's going to let me get back to all the things in my life I haven't had for months.  

I hope everyone has a comfortable day!

Bec, congratulations! Wish we could take a sledgehammer to the BGC when we finish. Phebe, the wig does look good. Toni, what a terrifying experience, to feel so exposed in that way. Having our head uncovered when we weren't planning on it is like having our naked body out for the world to see. Make yourself a cup of tea and let's pretend we are sitting in your kitchen commiserating. Smrlvr, stock up on good movies to watch, but those of you in the throes of winter are probably sick of watching them by now. As a matter of fact, those of us in the throes of cancer treatment are all probably pretty sick of watching them by now. Maybe we can have a virtual weekend together, a pajama party for the November chemo girls!

I'm doing okay, I suppose. I was nervous about the rads, and needed my drugs badly. For some reason I chose the night before starting to try to sleep without assistance. I went to bed at 10. Woke up at 12. Woke up at 1. Woke up at 2, when I threw in the towel and medicated myself. I needed an Ativan to go to the rad appointment, same thing yesterday. Today, day 3, I was calm enough to go unmedicated. Yay me. Rads isn't terrible or anything, I suppose the only thing is you lay there with your breasts exposed and your arms above your head with all the people buzzing about, that doesn't bother me, I'm just terrified of the enormous robot machine with its toxic death rays aimed at me. Logical, not so much. I managed to be brave throughout the surgery ordeals, the infection, and the chemo: now radiation, the least horrible of the treatments scares me. Go figure.

Taxotere, the gift that keeps on giving. I look like Humpty Dumpty with my bald head, and now my body is taking on his attributes too. I'm round and puffy. I've gained 8 pounds in the last week and a half, and not from eating. I'm full of water. It's in my feet, my ankles, my legs and my belly. Ugh. If I catch a glimpse of myself naked without my makeup and wig I can't help but feel depressed. I talked to the MO nurse this morning, she just said, yeah, that's the taxotere, it will go away. I'm trying to chase down who has to order my port out. I guess it's the MO, since the surgeon's office said to just get interventional rads to do it. I should have asked this morning when I called, but I was all about the feet. I missed a cardiologist appt back in October and need to call. It seems I can only handle dealing with one medical thing at once or I get overwhelmed. Makes no sense I know,

Paulette, how are you? So worried...

Pat, I think I'll be nervous about rads too.  Mine is on my left side, and my RO said I'll have to learn deep-inhale breath-holding techniques in order to help protect my heart and lung.  Really.  That's far too much responsibility for me.  I tried today in the shower and could get only to about 15 seconds.  I'm sure when I know my heart's and lung's safety are riding on me, I'll only be able to make to ten before I start panicking.  The passivity of chemo suddenly seems nice.

Hi bec65,

Thanks for the welcome. The plan is to have my uterus and ovaries removed. I'm just torn as to when I should get the surgery, before or after rads.

I went to bed thinking about spring. Dreaming about working the warm dirt, planting my garden. Woke up to the facts that it is still 7 degrees, there is still ice everywhere, I'm still bald, and I still have cancer. Something about the warm spray of water and the steam in the shower just lent itself to a good cry. Then I hit my head on the wall of the shower and told myself to just stop. A former co-worker came by the store yesterday. Her liver cancer was found far too late to cure. The past 6 months of chemo is just an effort to prolong. And now her insurance has denied her MOs request to do a type of internal pellet rad. It's considered experimental in her type because it's only been done on 5000 patients. I smacked my head on the wall to stop myself because I realized, soon it will be spring, I will work in warm dirt, I won't be out of the tunnel, but I will be seeing the end of it. My friend's tunnel may be sealed closed by then so what the hell do I have to cry about? I vow NO MORE TEARS. My life, like all of ours, is in a state of chaos right now. But I still have a life to look forward to. One day I will be able to just do things instead of planning around this treatment or that SE. The right now is hard, but it will end and I will go forward. There really isn't anything I will cry about again. I know that I will be good again. I will play ball with my dogs, I will have hair again, one day I won't have the Big Ugly in my chest anymore. I will see my granddaughters marry and have children of their own. My poor friend doesn't even have the comfort of her daughter or grandson because they live Ireland. All of my immediate family live within 20 minutes of me so I do have them to lean on when it gets rough. So I feel lousy for one week of every three. Not a problem when I know that I will have many, many more weeks of feeling good when this is done. Life, even life with this chaos, is good after all.

I too started Chemo in November but didn't realize there was a thread for this on here until now!! I'm down to my last 2 Taxol treatments and feeling great so far. I can't believe I made it through the AC  rounds!  Neulasta was a blessing!! 

 I'm 34 -TN and BRCA 1+.  I was trying to have kids prior to this so I am feeling very robbed of many things that I wanted in my life.  I am slowly trying to reconcile with the potential loss of being to have my own children as at some point I will have to have my ovaries removed.  I am having my double mastectomy  sometime mid March and I was all excited that I could get the tissue expanders  in at the same time.  I didn't have true clear margins after my lumpectomy. My surgeon that is doing the mastectomy is confident that she can get clear margins though.  

 I just met with Rad Onc. and was told that based on my age of diagnosis (34) that even if I do get clear margins I still need RADS for 6 weeks. That is the NCAA protocol.  I know plastics won't want to put expanders in and she said she doesn't like to radiate when there is something covering the site so my reconsturction will have to be postponed until six months after  RADS.   I am soooooo devastated.  I am a summer girl and I was really looking forward to having new boobs. I feel totally robbed.  I know I can get prosthetics... but this is a huge disappointment to me as I was using the goal of getting my boobs after chemo..... to get me through chemo. 

I just want to feel like a woman again.  I am so glad I am in therapy!  I just don't know