Starting Chemo in December 2013

RHGSR

kjfromca - them not being able to state pre existing condition was put on hold for 2013 (although no one was notified) It went into effect in 2014. And you are right - even the insurance companies have no idea what the "rules" are now. It is such a mess. Whenever my husband calls the insurance company it is never shorter than a 1-2 hour wait to talk to someone. It is almost like a second job for my husband now. It is so stressful. 

I start dose dense Taxol in 5 days... Really hoping for less tummy issues than with the AC. Anyone have a really bloated abdomen? I look pregnant. I guess maybe it's from the steroids?

RHGSR

thank you everyone for your support and encouragement with the insurance issues. 

RHGSR

just went back and catching up on reading posts. 

I've shaved my head bald twice. Since my last AC I've noticed that the patchy stubble isn't growing back as fast. We will see what the Taxol brings. 

Facial hair stinks-  I lost the hair on my head but my mustache and chin hairs are hanging on!! I told my hubby I'm going to end up bald with a goatee!! LOL

Crazywabbit

mikesgirl. That is a lot of fuzzy hair. I think my stubble is starting to grow a bit. It catches on my scarves now. Still can not really see it but feel it.  I have lost the lateral half of each eyebrow now. 

Found I can still taste garlic, I made hummus today and added extra garlic in it.  

Wishing everyone a quiet weekend. Hoping for the snow storm to skirt to the south of us but I think we will still see a significant snow accumulation.  Will this winter ever end!  

Barbara

RobinLK

My hair is getting longer, not thicker. Matches the fuzz on my legs. I am restraining myself from running to the mirror to check for facial hair. Nose hairs would be a blessing. My MO says nail issue will most likely occur farther along into the tx. Lovely....mine are growing still, but also have the ridges. 5 down 7 to go.....

Jodi040812

trying not to jinx myself, but this week is my last taxol and I have no nail issues.  I also didn't have any numbness.  Hoping no a late bloomer in all of this.  

Had a bad night with a meltdown.  My blue day came early this week.  I am annoyed with no family around to help us at all.  We travel each week and have 3 girls, and we are depending on different friends each week.  I have had over 6 friends go tonTexas with me. This is nice, but not good sometimes.  I feel like the cancer guide each week.  I have to tell them about the place. Explain where and what we are doing etc.  It gets old and tiring.  Some want to go out to eat and get a drink the night we get in.  Fun- for them, I'd rather just stay in the room and watch tv and go to bed.  Each week is different because it is a different person going who me.  My mom has been once.  My sisters have not come at all.  Mostly my husband and friends.  So, tonight I just fell apart.  I wish I had a mom who would be there for me or my kids.  Or even a sane MIL to watch them while I went to treatment.  I decided it was time to go to bed.  The thoughts are not helpful just stressful.   It will not change anything.  Just sleep and feel better tomorrow.  Pity party night I guess.  Although, I think I was overdue for one:)

RobinLK

Overdue is never good....I like how much better I feel after a rant/meltdown. Somehow it is almost cleansing. It doesn't change what is, but helps me to keep pushing forward. Sorry you are having a rough time right now.

RHGSR

Jodi - this site is a great place to rant and let it out. I have typed through tears many times. 

I know how hard it is for me with the 3 children and my treatments being just over in the next town. I can't imagine trying to travel to a different state. 

I had a lady tell me once that All things (good and bad) have a beginning and an end. It seems like lately I have been repeating a lot "this has an end". 

We can all do this. It is hard and it sucks but it has an end ... We are going to not just make it to the end but we are going to blow through that finish line stronger than when we began. 

DJJ

Jodi, I'm so sorry.  It has to be so hard to travel to a different state for treatment.  I can't imagine the stress that must cause on top of what we are already deal with.  I'm single and my family is all in a different state so I try and do everything myself so I don't put people out but when I need to I ask friends for help.  I can't imagine doing this with three kids.  You deserve a good meltdown. 

I had a meltdown last night too.  I finally had a night out and went to a small venue concert with friends I haven't been out with in a while cause of treatment.  They were all glad to see me and I was the center of attention, which was nice I hadn't seen them in a while and they wanted to know how I was doing.  I was having a great time catching up with them.  Except one of my best friends and biggest supporters got jealous of the attention I was getting. Especially because a man she likes, that is also a friend of mine, was talking to me...WHAT???  How old are we?? I'm a little busy fighting for my life and not thinking about men.  We got in a BIG fight and I'm not sure this is repairable.  Is it wrong that maybe I don't want to repair it? We have gotten in a fight before over her jealousy.  These last several months has brought things into perspective on how I want to live my life and the kind of people I want in my life.  So I ended up leaving the concert early to have my meltdown. 

kimie06

DJJ - nice friend, wow..........that's ridiculous, she clearly has issues. Don't let her childish behaviour get you down, you are a much better person then her.

Jodi - the travel sucks... I am about to experience when I start rads, an hour each way for 6 weeks.  shoot .......me........in........the......face...LOL and much like you its going to be a bunch of people that have volunteered to take me on different days which is awesome. 

Pretty sure we are all just at the meltdown stage, we have been through a lot and we are ready to be DONE.  

jackieak

DJJ, that friend is questionable....I said before those little petty things in life are so meaningless now...I guess to us anyway?  I love getting compliments now from anyone who doesn't know what I'm going through, we need that ego boost...because most days I feel like a freak and know I portray it...but maybe not.  

Jodi, yes you need and deserve the meltdown.  What I have discovered from my mom (who lives out of state) she keeps making plans to come to help, and then cancels.  We lost my dad to cancer, he was 82 so had a good long life, but I believe she is relating his to mine, even though she knows and understands the rates for BC and outcome are much better.  It's her fear of seeing it and being near it, so I'm giving her some slack.  Would love to have her here, but without her saying I do understand.  

kjfromca

Jodie - My heart goes out to you.  I can only imagine how draining all this travel must me on you and your family.  Not sure if I read this correctly, do you have one more Taxol or are you finished?  I am glad to hear that your nails are hanging in there and no numbness.  Are you doing rads after?   

DJJ - Stay away from toxic relationships.  She deserves a wig slapping... sounds like she has watched too many episodes of Real Housewives.  

Kimie - I too have to travel an hour each way for rads.  I will probably drive myself unless they tell me otherwise.  When are you finishing up with the Taxol?

Kim

Jodi040812

Thanks All!!  And yes this Friday is my last Taxol!!  I move on to FAC for 4 treatments every 20 days. If I can just make it through the next week last taxol, and next week FAC- I'll have 19 days free!!!  First time since December 11th that I won't be driving 6 hours to texas and then 6 back home!!  

I have to do rads in Houston:(. Fortunately, it will be during the summer!  So the whole family and dog are moving into a temp apt or Residence hotel in June/July.  That seems surreal too, but then it will really almost be over, rads for 5-7 weeks. Not sure of how long yet. They were not lying when they said chemo sucks!

I should be thankful!  Last taxol with no complications I have seen yet.  Nails here, no mouth sores or numbness of fingers. I am very nervous about FAC.  I guess the same way y'all were about switching to taxol.

RobinLK

OMG a wig slapping.....I LOVE it!! Too funny, even though the situation is not....

Finally having a manageable week with the Taxol side effects. 

Jodi, happy your family will be able to join you for the rads. Will your stay be covered? If not, have you looked into American Cancer Society for assistance? I believe they help with lodging expenses. patient lodging

kjfromca

Robin - Your picture is hilarious.  I have been known to say, "You do not want me to yank this wig off of my head and slap you with it."  

Kim

joanmj58

Ice and snow here in Fredericksburg, Va. My 5th infusion of TC was canceled for today. Will be going in tomorrow I hope! We are to get 6-10 inches of snow. The lines at the grocery store were long yesterday! Can't wait til #5 is done! Then just one more left. So far just minimal SE's! Have a great day.

Joan

RHGSR

stay warm Joan!! No snow or ice here in central Texas but freezing and crazy windy. 

I'm supposed to go for Taxol #1 on Thursday but I've got allergy /sinus stuff going on. Going in for my pre-infusion follow up tomorrow. I'm hoping I'll be well enough to get it on Thursday. 

DJJ

Thanks for the advice ladies! Wig Slap......LOL

Robin, glad your side effects are manageable this week.

My neuropathy has not gotten any worse from my last round, woo hoo!  The Gabapentin is also doing its job with the tingling and pins and needles. 

Snow day for me!!! I love having a paid day off.  

Leealice

Jodi-I also get pain/muscle fatigue behind my knees. It gets better as the day goes on. My 3 boys are a little older. Im amazed at you with 3 young girls and traveling out of state. I'm glad the weekly taxol will be over. I'm doing TAC chemo every 21 days and as long as I don't catch anything, I have 2 good/decent weeks between chemos so I hope the same for you.

DJJ-This is a good time to cut drama out of your life. We need only positive supportive people around us.Good Luck

Love the wig slapping-I'm going to use that

charusa

Mikesgirl, my head looks the same as yours, most of mine are dark but they are all soft not brissely and I have had them since my third round of AC, heading to my first taxol on Thursday but my taxol is going to be every 3 weeks times 4 rounds. I have some lashes and very little brows and no nose hairs. I am not shaving my head those little hairs are troopers and withheld the storm so they deserve to stay. My biggest pet peeve is my head is constantly sweating if I go outside topless and sit on the deck or in the house if it's warm. It is the most disgusting feeling b/c my head feels so clammy afterwards.

I am a nervous wreck about my upcoming taxol and I haven't seen anyone else here that is on the every 3 week cycle. I can deal with whatever side effects come along but I am nervous about have an allergic reaction to my first dose. I will not be getting benedryl but she is going to give me the ativan even though I take xanax. I have some kind of pill to take the day before tx and one the day after tx. Somedays I just feel like saying stop, I have had enough of this let's just move on to the surgery but then if it comes back then I will blame myself for not finishing tx. I am at the mid-way mark and as long as I don't have a bad panic attack and no allergic reaction I guess I can do this.

count_it_all_joy

Sorry for you ladies that are getting weather delays.  If you're like me, you're just wanting to push ahead!  Maybe today you can think of one more thing you'd really like doing (or eating!) at home while you're still feeling well enough to enjoy it.  

Jodi - I'm so sorry you're having to be the one to teach someone new each time how to help you through treatment.  Especially when the things you need most you don't want to have to ASK for.  It would be nice to have a "how to" and "how not to" manual to give to friends before you get in the car!

DJJ - I think some friendships will not last through these times, because it takes some real drama for us to recognize the diva drama and say no thank you.  You deserve better, and I'm sorry that's how your special night ended. 

Yesterday was my day 4, and it was the worst day I've had emotionally since all this started.  I pretty much cried off and on all day, and kept having to go hide in my room til I was fit to come out for a while.  In the morning, I knew what I was crying about… I was grieving not being any of the things that make me "me".  I'm not the wife I was, the mom I was, the teacher I was, the homemaker I was, the friend I was, the encourager I was, the reader I was…  I couldn't recognize that masculine face in the mirror  :P , I couldn't keep my thoughts straight, and when I tried to write them down, I was having such a pain in my hand that my handwriting was not even my own.  Even today I picked it up, and would never know that it was me who wrote it.   By the end of the day, I could tell it was a mix of reality with steroid/hormone yucks, and I just needed to ride it out.  God bless my dh, who kept the house running, held me, prayed for me, brought me supper in my room, played games with the girls.  And a friend who called in the midst of it all, and listened to me as if it were all normal.  I finally decided sleep was the safest thing for me, and went to bed early.  I actually SLEPT, and this morning I woke up, and I'm normal again.  Calm, rested, enjoying the sun, and ready to get up and start my day, and do as much as I can for a day 5.    Really??  I don't think I can do that very time.  I really hope it's not a repeat experience!

RHGSR

count it all - thank you for sharing that. It sums up a lot. I feel a similar way. I'm glad you got to sleep and are felling better today. 

oranje_mama

I haven't been here in a while, seems like we are all hitting a lowpoint.  I've also had some real down days, I think it's because this treatment takes so damn long, and we are 2+ months into it, ladies!  That's a long time!  

Count it all, I agree that I just don't feel like I'm "me".  I'm constantly feeling like I *should* be doing better at . . . work, parenting, being a wife, being a friend, etc etc.  It's just so hard to keep positive when you are feeling so bad for an extended period.  Also, the day I "turn the corner" from chemo seems to take a little longer each time.  After #3, it was Day 11 for me.  I had expected to feel better by Day 10, and that last day of feeling so bad was killing me.   After #4, I lowered my expectations for Day 12 . . . and had a "pleasant surprise" yesterday (Day 11) when I actually finally felt well enough to get out of the house and do something.  

DJJ, somewhere back in this thread did you mention having Hand & Foot Syndrome (HFS)?  Yesterday I went on a long walk & visit to a museum, so was on my feet for a long time.  I had terrible tingling/soreness on my feet & a little on my hands.  When I got home & took off my shoes, the soles of my feet were beet red, especially at my ankles.  They are also peeling, as is one part of the palms of my hands.  Dr. Google seems to say that this is HFS, which is listed as a "rare" SE of Taxotere.  Of course, MO office is closed today (because of snowmageddon #5?6? this winter).  I don't think this qualifies as an "emergency", so I'll be calling MO when office is open again.  I did sleep with my feet up on a pillow last night, and it seems a lot better today.  I'm mainly worried that HFS seems to be serious enough to lead to a reduced dosage of Taxotere (which would be fine w/me) or holding chemo (which would NOT!!!!)  Wondering if you did have HFS & what your MO said about it.

For those battling with insurance companies, I understood that "pre-existing condition" was no longer allowed as a reason to deny coverage.  I'm so sorry that you have to fight a 2nd fight with the insurance company.  It shouldn't be like this.  So far, fingers crossed, I've had a pretty smooth ride with Aetna.  Eventually insurance is paying for Neulasta, just took a while to get worked out.  The biggest thing they've denied is my wig.  Because I went "out of network" to buy it.  Honestly, it didn't occur to me that there would be a "network provider" of wigs (actually, there isn't; I was just supposed to go to the ins co first to get permission to go somewhere other than Nordstroms??!! which does not sell wigs).  I thought the prescription from MO was enough.  Oh well, that's a relatively minor thing in the grand scheme of things.

keepthefaith

OM, yeah, I called  Aetna also about my wig and they said it is covered under "medical equipment" or something like that....I told him. " what medical equipment company carries wigs"...? Just another way to not pay, I guess.

I hope you all that are feeling down get feeling better soon. This BC really takes a toll on you in so many ways. My lows seem to be getting fewer and farther between, but I am done with chemo, so I'm sure that has something to do with it; although my treatment is not over. I think our expectations of ourselves exceed our capabilities right now and it is so dis-heartening. I get the feeling that some of you feel like you have let your families down or are failing in some way right now. Please don't be so hard on yourselves. You have chosen to fight this fight as hard as you can, for yourself and your families. You could've chosen to do nothing. You are entitled to cry and have a pity party now and then.

count-it-all, I can tell you appreciate your wonderful husband. What a blessing. Your girls get to see what it means to have a great husband and father. That is priceless!

I have been journalling my way through this. I am hoping that in a year or two, I can look back and proudly say that I got through it. Maybe I didn't do it with as much grace as I had hoped, but that's okay; at least  I showed up!

((HUGS))

 

 

DJJ

Oranje mama, My MO confirmed I had HFS from the AC.  My feet felt raw and the bottoms were red.  My pinky toes felt like I had dropped something on them as it got worse.  I wore slippers to work with my suits  My thumb, middle and index fingers got red swollen and itchy and both my hands and feet peeled badly  (feet still peeling).  I put bag balm on them every night.  They also tingled.  Icing them felt so good and I slept with my feet up. 

HFS went away once I was done with AC then of course neuropathy started.  I'm so lucky

With both the HFS and Neuropathy I have learned to plan my activities.  The more I'm on my feet the worse the symptoms get.  Working out is important to me so at work instead of walking to talk to someone, I email them.  I skip walking to the coffee shop with co-workers and sit at my desk and keep my feet up on a box of paper I stole from the supply closet.  Then I have my feet for working out and walking the dogs!  I've never sat so much in my life.  It's driving me crazy.  I'm just glad we're going through this in the yucky winter.  We'll be done in time for spring.  Hiking season!!!

QuirkyGirl

oranje mama - I have the same HFS problem and like DJJ walking makes it worse.  Made the mistake of going to work in flats on Friday and I'm still paying for it with painful feet today.  Also have neuropathy.  I've been on TC.  

count_it_all_joy

DJJ & Orangemama & QuirkyGirl -

listening to you all just hurts.  And you never say anything, as we're fretting over taste buds and lost hair… I'd feel better if you'd complain about it once in a while so we can root for you.  It's got to make treatment time move that much slower.   Hoping for improvement for each of you.

kimie06

Kim - I will done taxol on march 18th I have a treatment tomorrow then the last one in 2 weeks, I was told rads will start within 3-4 weeks of that.  my oncologist actually reduced my dose for the next 2 because of the neuropathy.  I was like is that ok...he said yes you have had a lot of medicine this wont hurt, but at the same time I need my hands and feet for work.

DJJ and orange mama - my feet are peeling in parts but doesn't seem to bothersome, other then the tingles..

Charusa - don't be nervous about the taxol, but...why aren't they giving you Benadryl first, that's the first thing they infuse me with then the taxol.  my taxol are every 2 weeks and I have 4 in total....number 3 tomorrow.

hmmmm...maybe I should try slapping someone with my wig LMAO that is hilarious.

count_it_all_joy

RHSG & orangemama - it's good to feel not alone.  And 11 days sounds like a LONG time to come around.  I'm whiny by day 6!

keepthefaith - I so agree, it is good for our daughters to see what matters in a husband, when it matters.  I hope it helps them to choose wisely when their day comes.  My husband is not one of those meek and mild men who seem like a caretaker on the surface, but yet his strength comes through big time and he is just what I need.  

And I needed to hear your words about how we see ourselves right now.  Trying to get to that place where it's enough to know I'm a child of God and HE thinks I'm precious.  I thought I was there… I thought I had worked through some of these thoughts earlier on in treatment, but as I feel begin to feel less useful and less like myself, I seem to need to work through it again at a deeper level.  It may come with some tears, but it's a GOOD thing.    

Mikesgirl17

Hi.  I just had my 3rd Taxol.  1 more to go.  I brought my best friend instead of my husband today.  Time flew by.  I actually said that we needed to keep it down.  There were a lot of people who might not like the sound of laughter. ( Laughings better than crying right.)  Last Neulasta shot tomorrow.   2 weeks from today, I'm done.  Can't wait!!!!!