Chemo June 2010

Kitty - woo hoo to you for being done!

Chey - good to hear from you and also to hear that you are better. 

What's this talk about tumor markers?  My onc has not said anything about that to me.  Is that something they check each time when they do your bloodwork?  Or do you have to have a special test for that?

I am seeing my onc tomorrow.  Much to talk about.  My left arm has been very painful for about three weeks now - probably due to radiation.  The swelling is not much, but it is very painful to touch and I have intermittent sharp pains throughout the day.  Then there's the benign tumor on my spine that is very uncomfortable.  I don't know what they can do about that.  My main issue at the moment is sleep - or the lack thereof!  I've tried sleeping in my bed on 3 or 4 occasions in the past month or so and every time I can only last about 3-4 hours.  And I'm not sleeping during those 3-4 hours.  My joint pain is much more intense when I try to sleep in the bed.  We have a sleep number bed and I've adjusted it all over the place with no success.  I've been sleeping in the recliner in our bedroom since the beginning of November and now can't seem to get comfortable in it either.  If I'm going to go back to work this next week, I am going to need to get some sleep.

Hi Ladies, I have not been posting much but do read everyday and appreciate your postings.  I get my port out tomorrow. 

Dmom, my check ups have been only talking on the telehealth video conference with the onc.  I have not had any bloodwork since last chemo in Sept.  They say they don't check tumor markers any more.... I have a complete physical with my GP early March so we will see then where I am at.  I have high blood pressure now that I didn't have before chemo. 

Latte, hang in there.  Rads does tend to go faster than chemo and will be over before you know it.  Be kind to yourself.

Congrats to everyone who finnished or is near finnishing.  It feels good to be done.  The fatigue lingers and chemo brain still evident.  I have delayed going back to work until Feb. 15, and that will be part time for the first six weeks.  I'm not sure I'll be ready but feel pressure from the insurance company to return as soon as possible.

It is so cold and snowy here in Manitoba.  The side of the driveway is so high you can not shovel any more snow up there! (not that I do the driveway clearing)

Love and Hugs to everyone, Mimi

JFV-  Thanks for that great explanation about tumor markers.  My Onc doesn't seem to believe they are valid data, so never checked.  I have always wondered.  Maybe now I should be glad I don't have more confusion!  There doesn't seem to be medical consensus on this.  I guess just another piece of the biiiiig BC puzzle.

Mimi-  This is going to be a bumper crop for snow everywhere it seems.  Even here in NYC they are still trying to dig out all the garbage bags from our first blizzard.  Spring can't come soon enough for me!  Stay safe in all that snow.

I am slowly compiling my vitamins and supplements that I think might help my body and immune system get and stay strong.  There is lots of evidence about spices like turmeric and also green tea.  Countries that use these have much lower cancer rates.  Even integrative doctors from cancer centers like Anderson and Sloan are recommending them now.  Can't hurt!

Had my appointment with onc today and it went well.  I'm still having issues with neuropathy in my toes and joint pain, but he says that will take time.  Good news is I get my port out.  Will call the surgeon tomorrow and get that scheduled.  It took three nurses 30 minutes to access my port today for blood work.  The crazy thing is tipped and is difficult to access.  A month ago it took 2 nurses 15 minutes to access.  It's about time it comes out. 

We talked about hormone therapy and I got a prescription for Arimidex (sp?).  So,  I guess I'm ready to hear any horror stories about this drug!  It seems like I came to the end of my tx so quickly that I haven't done any research about the hormone drugs.

I wore my own hair in public today for the first time.  Everyone was complimentary though I suspect some were just being nice.  My husband says it looks good and surprisingly, my onc even made a couple of comments about how he liked it.  So, I feel better about wearing it when I go back to work on WEDNESDAY! ! YAY!  Just have to take care of some paperwork with the district tomorrow and then I'll start back on Wednesday.  I am so ready.  Probably only work about 5-6 hours this week and then go full time next week.  I feel like I'm 90% back to normal healthwise.

Hi  Sorry I post here so much ! The weather stinks and I spend alot of time on the computer and love to check in and see how everyone is doing.  Then I come up with a question or comment I want to share.  Hope you ladies don't mind ! 

Congrats on going "topless" Sherry ! 

Jackie did your hair just start to curl after being straight ?  My hair is still very short but just developed these areas that stick out and won't lay down no matter how much water or conditioner I put on them.  I am wondering if I am at the start of that curly hair everyone told me I would get after chemo ?

Dmom- I agree that not having known my tumor markers would have lowered my stress level.  Particularly since my Onc couldn't say that it really showed a problem or not. I have a friend who did all her treatment at Sloan Kettering and they didn't do tumor markers.

Bon-  Are you out there ?

Bon!  Hey girl!  Always good to see you pop up!  I am so very sorry about your insurance anxiety.  I totally understand.  I was just battling today about a referral that was not aproved.  "It's always something".  The photo is actually my real hair.  As I did CMF, I was one of the extremely lucky ones that didn't lose all my hair.  I will keep you in my prayers that your insurance works out.  About that cough.  There is an old wives trick that works like a dream.  I used to use it with my son.  Rub Vicks Vapo Rub on your feet and cover with socks before you go to sleep.  I don't know why, but it works!

I read about someone who called the police because they heard shooting in the apartment next door.  When the police arrived, they found a guy shooting his computer!  I'll help bail you out if you need Bon!

JFV-  I so totally understand the stinkin' weather.  This raining, freezing. sleeting glop is the pits.  I ended up walking miles out of my way today just to find places to cross that didn't have lakes of slush.

Sherry- You sound great!  I am celebrating with you!

JFV - yes my hair just started showing some "wave" when it got about 1/2 inch long.  By the time it got to an inch or so it was curly.  However, I have a perfectly straight calick in the back.  So I wave and straight.  It is so funny because my hair was poker straight before.  It is also a different texture now.  Baby fine soft - used to be coarse.  It's about and inch and a half long now.  I actually  have eyebrows and eye lashes coming in nicely too.  I can almost see myself in the mirror.  Almost! 

Hi everyone,

I'm just chugging along here through rads - past the halfway mark.

Bon, sorry to hear about your cough and your insurance - i hope it works out for you, and I wouldn't think that missing one heceptin while it gets sorted should be a problem.

Kitttycat - i had my port out a while ago and know how great that feels! I am going for my ultrasound tomorrow, and then my surgical consult - I want to have my ooph at the end of february.

to everyone who is talking about curly hair - my hair is about 3 cm (just over an inch) long, and full of gray (had no gray before chemo), and i have given up on hoping it will be curly - it is dead straight, and unless i plaster it to my head, it sticks out in every direction and i look like i've been electrocuted!

Anyone have recommendations for semi-natural hair dye that covers gray? DMom, I think you had a bad experience with one, can you please remind me of the brand?

latte-  Great to hear you are halfway through.  I used a henna hair dye by Surya which was "guaranteed to cover gray".  It did absolutely nothing...useless.  So far, I am living with the gray, but there seems to be more and more every day.  Let me know if you find something good.

Kitty-  I'm so very sorry about your college friend.    This d&^%$mn cancer seems to be everywhere!  I just heard of another BCO sister who left us quite quickly.  Her name was BoPeep and I seem to have just talked to her a couple months ago.  It is all very, very scary.  I feel like most of my energy is spent trying to stay positive and not be frightened. 

Sorry I haven't posted lately but I have been reading the posts on my ipad and it doesn't let me post from that. Cheers to all of you who have finished or are finishing up soon.

Today is my last day of rads - can't believe that I am finally over this hurdle. The rads doctor said my chest looks better than 99% of the patients that go thru this. My PS will be happy that the expander held up quite well - I don't even think there was much shrinkage, if any. I am flying out to Phoenix on Sunday to spend the next few months at our other  home. Can't wait to get out of this CT cold and snow. Danbury CT has been right in the middle of the last few storms. I had 30 inches in my driveway last week.

I have an oncologist there who will give me my herceptin every 3 weeks. When I come back in May I will have the expander removed and the real fake boobie put in and then hopefuly finish herceptin in September. I also will be taking either Tamoxifan or Femora but since I have osteoporosis, I think it will be the tamoxifan. 

My hair is all grey and even my eyebrows are impossible to see - I've been waiting for them forever and now I can't even see them....bummer. Same with my wispy little eyelashes. I'm just gonna give it time. I also go out without a wig - just use a hat when it is cold. People say I look like I just stepped out of the West Village. You NYC ladies will understand that.

Keep positive - I know it is hard sometimes. I'm going to try not to cry when I leave the rads office today. I have a tough time with transitions.

Hugs to you all.

Liz 

HOORAY LIZ !!!!!!  a BIG WOOT FOR YOU !

Bon- Hope you get your insurance fixed - what a drag.  Can't wait til the new health insurance coverage kicks in for us pre-existing ladies.  It will be one less thing to worry about. Latte - Some people have recommended Light Mountain organic hair dye; I got it at an organic food store but haven't tried it yet. Liz - Congrats on finishing rads!  So excited that everyone in the June group seems to be doing pretty well. Feels like maybe the worst is behind us and we can concentrate on staying healthy..

I start Arimidex tomorrow - hope the SEs are not bad.  I went "topless" on my vacation, but when I got back home today, I caught sight of myself in the mirror and gasped.  I don't think I'm ready to ditch the wig yet.

Oh, one more thing...my friend who was just diagnosed with bc had a clean mammogram. She has very dense breasts with lots of cysts but mammo showed no changes and nothing alarming. Her gyn doc ordered an ultrasound because she was was having some nipple changes. The uttrasound lit up like a Christmas tree. They did another mammogram that day...still shows nothing. The biopsy from that same day clearly indicated that she has not one, but two types of cancer.

I, for one, will always DEMAND an ultrasound each year from now on.

DMom, Yes, you're right about the knitting. It's getting to be a 'thing'.

My insurance is from a small group that was organized as a self-insured entity. Big companies do that all the time. This company tried it and it failed miserably. I didn't qualify for cobra because the insurance carrier (United Health Care) pulled out of small group coverage in Florida so we filled in the forms for another carrier...and that day Cigna announced the, too, were not continuing with small groups. Then we went to BCBS of Florida and they are just slower than you can ever imagine. (I think the heat in Florida makes things go slower than up north). Anyway, we don't qualify for COBRA and the state insurance won't kick in until you've been without insurance coverage for at least 6 months. DUH...I'm trapped. And, to make things worse, this isn't covered by the insurance commissioner but comes under the department of labor. Self insurance plans are just nuts. Never get involved in one if you can avoid it. Being self-employed, I was looking for less expensive coverage that the $800/month I was paying. I got htis plan for just under $500/month. Then last fall it jumped to nearly $1700/month. Now they billed me the $500/month price but no coverage is forthcoming. UGH!  It's bureaucracy at it's worst. Oh, did I mention that the plan administrator is in Georgia?

You all might not agree, but a national health insurance program could save lots of money and lots of lots time and lives.  The healthcare industry is just that...an industry. I just hate dealing with this and have no patience for it.

Ok, rant over. Back to knitting.