Chemo June 2010

Thanks everyone for the congrats!  I am so glad to be done with chemo.  I haven't been as active on BCO this past week because I've been traveling.  I went to California for my cousin's daughter's wedding.  It was great to spend time with family.  Her daughter was absolutely beautiful and the wedding was really nice.  The weather was perfect, too.  We stayed with my cousins.  At first I felt strange without the wig, but my cousin caught me without it after taking a shower.  She couldn't believe my crazy head of hair.  I have a full head of gray hair that's mostly curly (about an inch long).  I went "topless" again the next day, except having a hood on from my sweatshirt.  Her daugher and new husband came over.  I could tell they were avoiding looking at me.  I'm sure it's strange to see someone have no hair who used to have a ton of long hair.  Then, I realized that I'm not very attractive right now with gray short hair, no eyebrows or lashes and a slightly puffy face (from the steroids).  It kind of made me sad.  When my sister was done with chemo and recon, she told me that she looked like a thumb (with no hair) and had these orbs on her chest.  Kind of a let down after everything we've been through. 

Sherry - Have you consulted with a plastic surgeon?  If you're considering having a BMX, I would definitely talk to a PS that specializes in breast reconstruction (not just augmentation).  Ask your breast surgeon for a referral.  I was originally told to get a lumpectomy and radiation (on my 1^st go around with BC last year).  I opted instead for a BMX even though I had DCIS, esp since I'm BRCA1+.  Talking to the PS and seeing pictures was really helpful.  I really didn't want radiation.  Now that I got BC again, I have to get radiation.  I am not thrilled about it, esp since I heard I could have complications from my implants.  Good thing is that I have my exchange implants in and not the expanders.  I am still worried about it, so I made an appt to see my PS next week.  I haven't seen him in 5 months, since I got dx with BC again.

Grney - CONGRATS ON FINISHING CHEMO!!!  Wooppeee!!!  I can't believe you got the pat down by TSA.  I travel a lot for work and was always worried about the TE's.  They never set off the alarms or anything.  Thank goodness. 

Mimi - I would definitely get your arm checked out.  You know, I was never told about LE after I had my lymph nodes removed.  My BS never mentioned it and I fly a lot.  It's a good thing I did not develop it and I hope I don't.  Ughhh... all these things we have to worry about.  BC - the gift that keeps on giving!!!

Dmom - you are an inspiration walking 40 blocks.  I can barely walk through the airport.  I can really feel the fatigue from chemo in my legs.  And I can't walk as fast as I used to.  So strange!!!  I was in a training class at work today.  I couldn't find the conference room for a break out session.  I didn't hear the instructor talk about picking up some paper to read.  Needless to say, I must have walked the floor 4-5 times - I was pooped!!!  And I still have chemo brain!!! 

Chey - I have neuropathy in my middle toes and in my fingertips.  It started when I wore high heels for my sister's wedding.  After wearing sandals with heels on them a couple times, I realized that it was only aggravating the neuropathy.  One of the chemo nurses told me that heels are bad for neuropathy (sure wish they would have told me this BEFORE I started Taxol).  Anyway, I only wear flat shoes now.  My onco's partner told me to wear shoes with good support, too.  I don't trip on stuff, but I drop stuff sometimes.  It's more annoying than anything else. 

Ok, so my rad onco called me today and left me a message to call her back.  She said, everything was great, nothing to worry about, she just needed me to call her back.  I got the message too late in the day and have to wait until tomorrow.  I got a CT scan on Tuesday & she said not to worry.  I AM STILL WORRIED!!!  When will the worrying ever end?????

Congrats to grneyday and Bon- WOOT !   WOOT!

Nannababy-  sorry about the migraines.  My first time back to church post chemo I had a migrain with wild visual disturbances and no pain.  It was really freaky.  I toughed it out and it went away.  Haven't had much headache trouble since.  Hopefull yours will be a passing problem as chemo and stress work their way out of your system.

Now I am freaking out.  I have had a rash on my face since Sept.  GP wrote it off as allergies.  RO looked at me yesterday and said although she has never seen it in real life the rash looked like Lupus to her.  As soon as the RO left the nurse said she doesn't think it is Lupus.  I don't think it' s Lupus.  But that little paranoid voice in my head is saying Lupus.  I will make an appt with a dermatologist to get this figured out.  As Bon said paranoia is just another "gift" cancer gives you.

On a good note my skin is holding up well through rads.  I have five more.  The rad tech said any redness or pain should peak five days after my last rads.  Then something like a tan.  Then somthing like a flaky, icky tan. 

Kitty - good to see you back here.  So glad you got to spend time with your family.  Thanks for the advice re mx.  I did get a referral from my BS for a PS who specializes in reconstruction.  I have decided for now not to have surgery but to go ahead with radiation.  Even if I decided to have the mx, I would still have to have radiation because I am node positive and also had extracapsular extension in one of the nodes.  I feel good about my decision now.  But, if even the slightest spot should recur in the future, both boobies are going to go.  The decision will be swift and sure.

Kittycat,  My onc said it was best to wait 6 months after treatment to start coloring hair but did not say why.  They make a stocking cap like hosiery that will keep hair flat to head so it does not peak out.   I got two when I went to try on wigs maybe you have one also.  They have them at Sally's here also.

Congrats to all finishing chemo and to those moving on to rads I am almost done.  2 Reg txs and 6 boosts to go and I am done.  Thought I would never finish but if all goes well last day will be Nov.  17th.  I am going to celebrate that day somehow.  My DH and I are planning to start taking weekend trips to see Christmas lights after Thanksgiving because we live near 4 really good places that have phenomenal lights.   That is going to be our Christmas to each other.  There is something so magical about seeing all those lights at night and being able to ride or walk through them.  Two of them will require a nights stay but that is allright with me as long as we don't get any bedbugs.  YUCK!!!!!

Jealous of all of you who are finished or almost finished with rads. 2 more Taxols to go - feet are very bad - numb and painful - bones hurt - very hard to sleep at night inspite of being exhausted. I find it does help to walk, but it has gotten very cold here. Is anyone else affected more by the cold during chemo & rads? I have my rads mapping on the 19th and start my 3 week hercepton on the 24th. Will fly to Phoenix to spend 2 1/2 weeks - find an oncologist to continue my hercepton when I return after completing rads sometime the end of Jan.- early Feb. My DH will stay in Phoenix while I return to CT for my rads. He will be trying to coordinate some major work we are having done on the AZ house and hopefully it will be all complete when I return.

I continue to love reading all your posts. You gals keeping me going and positive. BTW my ativan is .5 mg. Has anyone had to double their dose to get some sleep - Will talk to onc about that on Wed.

Hugs - Liz 

sandiddstn-- CONGRATS on finishing the Red Devil!!  That is one of rhe toughest chemos to get through!  Hope the SEs aren't too bad for you.

Wish I could start seeing some hair grow. I'm about 5 weeks PFC and I think there is a little fuzz up there, but not much.  Also, I thought I read that eyelashes were supposed to come back quickly--not true for me!  Can't wait until I can use mascara again!!  Like Bon, I think the Herceptin might slow things down.

I've had 9 of 33 rad tx so far.  My skin is a little pink, and I get some sharp pains sometimes.  I'm worried how my fair skin will hold up.  The nurse said they are trying to make my skin burn--that's what the bolus (layer of rubber-like material they place over the skin) is for--it brings the radiation closer to the skin.

JFV--How is the rash doing?  Figure out what it is yet?  Work still going well?

HI ladies,

Thanks for all the congrats on the finishing chemo.  I am so excited!  It is funny all this time with minimal SE's and don't you know they set in here at the end.  I am having terrible jaw pain and the neuropathy has progressed to "moderate".  I am convinced I will get through it though because I don't have to worry about more Taxol going in.  Went for a bone density test and MUGA today.  The Nuclear Radiation Techs couldn't wait to show me how healthy my heart looked.  I was producing at a rate of 71!  That is even better than the last one.  And, when I got home the dr office called and told me my density test was good as well.  Nice start to the week.  I am set for radiation simulation on 11/22.  I having my expanders drained on Wed and meet with med onc on Thursday.  Whew, what a week. 

Hope you are all doing ok.  JFV - I have a rash on my hand that everyone is finding bizarre.  It just showed up about two weeks ago and we can't seem to make it go away.  You would think with all the benadryl they pumped it me I wouldn't be itching but GEEZ!!!  it itches like mad.  Hang in there and let us know how the appt goes with the dermatogist.

Has anyone experienced weird tooth sensations from Taxotere? Or other taxane? My dizziness has subsided a bit.   I'm trying to figure out what is causing my head/face problems.  Might be from Taxotere or my antidepressant Trazodone...??? Had Cranial CT last week that was clear. 

Anyone else get tissue expanders in before rads? How was your skin? Any complications I should consider?

I am jealous that some of you are almost done rads! I'm not even done chemo yet!  Last hit is in 2 days.  Should I be happy, cause I'm not.  I will never look forward to chemo.  Maybe I'm not happy because I know surgery is next...

I had a brunch get together on Sunday to celebrate my last chemo! IT was great to see friends and eat great food and actually taste the food

Take care ladies

Lizzy:  my feet neuropathy began the night of my 9th (and last) Taxol tx.  I'm sorry to report it's not much better eight weeks later.  I thought it might be finally getting better last week because my feet were not burning so much.  But they are still numb on the bottom.  I'm glad the walking for you has helped, although the cold could limit that.  Do you have a mall nearby you could walk in? 

Sand:  I will add you to my HERO list which is a list of those who have finished the devilish A/C tx.  CONGRATS!  I am getting some hair on top again.  It's almost covered my scalp, but isn't very long.  I don't have any eyelashes yet, but I'm kinda getting used to not having them.

Bon, Honey.  glad to hear from you.  You have really been through the wringer, but you have finally finished all the torturous tx.  You rest good now and take it easy.

DMom:  you just can't catch a break with your rad appointments.  How many have you done now?

It's official!  I got a call today saying they are ready to do my dry run tomorrow and I will start rads on Wednesday - 33 of them!  I'm a little excited to get started, but nervous too.  Also I haven't prepared for this - haven't bought anything to use on my skin and not really sure what to buy.  I guess I need to go to the rad board and get some info.  Chapter three begins Wednesday.

Sherry...please take a deep breath and know that you are not alone in this. As I am closing in on being 1/2 way through with my tx (done with the surgery, chemo and rads but still need Herceptin until June 2011) I get more concerned about recurrences and/or mets, too. My BS told me that this was an extremely aggressive form or cancer that might more readily reappear elsewhere, so they recommend removing my ovaries. That's because they are easily removable as compared to my brain, bones and liver!  My RO told me that Herceptin was my best chance. My MO says this cancer should be past me when I finsh up in June.  But he doesn't rule out others in the future.

I guess that this is all part of learning to live with a cancer dx and trying to climb though and get past the fear of it all. And as the end of tx approaches, it feels odd. So happy to be done with the tortures of chemo and rads, but frightened to not have something tangible going on every day to combat the cancer.  We've been at war and now we are supposed to put down our weapons.  It's truly like post traumatic stress. Learning to not be afraid and to move on with a zest for life will take time for me. Maybe for some of you, too. I know we'll be OK, but it's just such a surprise that with the joy of nearing the finish line comes the panic of what lies ahead.

OK, Sherry, I'm back this morning with encouragement. Sorry for the downer last evening...I think the news that my Mom is going to visit the mortician on Wednesday to redo her preplanned funeral arrangements got me pretty depressed. Her deteriorating health issues have weighed heavily on me all these months.

But now it's a new day. The sun is shining and I can think about a future...uncertain though it may be...a future without dwelling on cancer every day. I don't know if I am a survivor of anything other than this particular tumor and these heinous treatments, but I do know that I'm a thriver. I will look at each new day as a gift and each kindness offered as a blessing. And I'll try to be kinder and less judgemental...you never know what someone else is facing and their less-than-stellar behavior could be from the stress of trying to keep it together. And I'll laugh...at any good jokes and at myself. These past 8 months have certainly taught me humility. Heck, looking like Uncle Fester humbled me instantly.

So here I go, moving on without fear...well, at least moving on. And thriving.

Sherry-  Sweet Lady, please don't dwell on all the bad news.  You are doing everything you can to beat down the bad odds.  Even if the stats say there is a 30% chance of recurrence, you can be one of the 70% that does not have a recurrence!  And by the way, I hate those d*&%$mn statistics.  I have always bucked the odds all my life.  When my brothers told me there wasn't a chance in he**ll that I could make it owning a retail business in NYC, it p&^%ssed me off so much that I said "watch me!" and I never looked back.  You need to "fake it till you make it".  Act like Winston Churchill (one of my all time heroes).  "Never, never, never give up!"  And just know that we will be right here for you , the way you have been right here for us!

Bon-  You are my hero!  You have such a beautiful way with words.  You just always say it perfectly!  Ever thought about writing??  I'm so sorry about your mom, it must be so hard.  Take comfort knowing she continues to be independent and is taking charge of her own affairs.  Isn't that what we all want?  

Hello to all especially those going into your black holes.  Tmarinna, Sherry, Bon and anyone else struggling with fear.  We love you!  Fear is normal.  Remember that all those statistics are OLD and I am pretty sure are taken from all over the world.  Give yourselves some credit for having more modern treatment in an area of the world with top notch cancer care. 

Bon I am sorry your Mom is planning her funeral.  My parents are in their mid 80s also.  It is so hard to watch them age.

I was just reading a magazine about coping with cancer treatment and it states that the period of time we are going through now ( as our active treatment winds down) can be the most emotionally tough.   BUT, the magazine indicated that those who allow themselves to process the bad feeling now will be better off emotionally in the years to come.  As you all know I frequently deal with deep fears and some depression.  There is no way out except through.  Your bodies are still very tired and messed up from chemo.  Rest when you can.  Vent here as much as you can.  Other than that common wisdom says try to get some exercise.  I know they are a bit of a taboo subject, but, consider antidepressants.  I am taking one that helps my mood and my hot flashes.

On a more routine note my medical oncologists thinks my rash is Rosacea.  So I will get some cream for my face.  The lump I thought might be cancer is just a part of my rib.  I will have blood work, port flush and a recheck in the first week of January.  I might get a body scan then. I am not 100% sure about that .  I was asking when I could get my port removed and the Onc said I should just wait until after my first scan.  I don't know it that means I will get one in January or not.  The Onc also thinks my menopause symptoms will calm down the longer I am on Tamoxifen.  I will stay on Tamoxifen until we are sure that I am in menopause.  This Onc also mentioned that she read my chart the night before.  That made me feel good as it was obvious my other onc read my chart after she walked into the room to see me.

May everyone find comfort today!

Joan

Reading your lovely uplifting posts have made me feel better! Thank you!  I had an emotional break down last night   I told my hubby that I will eventually die from cancer, but when ? Will it be painful? And I was having bad memories of when my moms colon cancer metastesized (she died 10 years ago when I was 19)... I remembered washing her hair one night and noticing her first skull met! I cried sooo much last night!  I know I'm not alone in this, and coming to these threads helps me soo much!  Thanks again ladies

Last chemo tomoro and PICC lin removed tomoro! BS appointment on Friday to plan my mastectomy then shrink apt. next Tuesday!  Busy busy! I hope I will feel ok  

Has anyone tried LAtisse for eyelash growth stimulation? I think I'm going to give it a try in the near future...

ShadyLady:  No, I am not taking Tamoxifen - yet.  My MO hasn't said anything about hormone therapy but I assume that I will at some point.  Maybe he is waiting until I finish rads.  My cancer is actually invasive micropapillary carcinoma, but that diagnosis wasn't one of the options when creating my profile on here.  It is a rare, aggressive type of cancer, but I do have a couple things going for me.  My ER/PR status and I only had 3 positive nodes.  If there had been 4 or more, my prognosis would have been different. So, I'm holding on to those two things and trying to remain positive.  One thing I know, even though my body has failed me, my mind has remained strong with the exception of a couple of rare moments.

DMom, Bon, JFV, Mimi and others I can't remember right now: your kind words of encouragement, your sweet spirits and your caring manner has helped me more than you know.  I'm sorry I posted such dark and disturbing thoughts.  That isn't like me.  I am 95% optimist in nature.  I think the physical toll all this has taken on my body has wearied my mind somewhat.  Even though I have a nasty cancer, I do try every day not to dwell on the what if's, but to look positively to the future and meditate on what is true, what is pure, what is lovely, what is admirable, excellent or praiseworthy.  That is my motivation.

HUGS to ALL of you!