anyone starting chemo in Nov 2005

Hi ladies-I'm in the discouraged club with you all, too. I couldn't get my carboplatins again because my platelets have not come back up, they have PLUMMETED. They were 48,000, and are now 22,000. They were going to send me home with NO treatment, but I asked if I could at least get Taxol and they let me. So tack two more weeks onto the final count. I keep getting stuck at 8 weeks left to go!!!!!!! AARGH!!!!!!!!!!!!!!!!
I asked my onc. when this is going to end, and he snorted, "It'll end when I stop giving you chemo!!!" I know he must be irritated with my frustration, but it is hard to hold it in. At least the sucky port cooperated this week. Last week it wasn't doing much at all.

Some of our chemo sisters said I should post my experience from the other day in our thread. So here it is......

Ok, so yesterday our church was taking pictures for a new directory they are putting out. I have been tormenting about getting our picture taken for it because I am currently as bald as I can possibly be.

Well, then I was thinking that I HAVE to get this picture taken because if I didn't, then the cancer would be "beating" me. I was even considering going bald to prove to myself that I am in charge, not this stupid cancer.

I decided to wear my icky wig for the very first time for this picture. I have had the wig all along, but just HATE it and could never bring myself to wear it in public.

Bad idea. Why would I think that I'd be comfortable wearing a wig that I HATE for the very FIRST TIME for a picture that is going to be viewed by my entire church?!?!

So, I walk awkwardly into our church while clutching (pinching if you were to ask my husband) my husband's arm. Immediately about a zillion people tell me how "great my hair looks," and I become increasingly more uncomfortable.

We get called in to take our picture, and I blurt out to the camera guy who offers me a mirror to check my hair, "This is actually a wig because I am currently on chemo. I brought a hanky hat with me too, so would you mind if we did a few shots with the wig, and a few with the hanky hat?" The guy awkwardly says, "Sure, that is ok."

And here is where it is SO humiliating....
I have to open my big stupid mouth and continue by saying, "Are you comfortable if I just took the wig off in front of you? Are you comfortable seeing bald heads?" The guy answers, "Actually, yes, I have seen bald heads before." And I reply.....

"I DON'T MEAN YOUR BALD HEAD!"

OMG-from that point on I really just wanted to disappear.....
And, needless to say, the picture is AWFUL, because despite my pleas with my husband to warn me if my wig gets crooked, HE DIDN'T!!!!!!!!!!!!!!

Love and prayers, Debbie

Debbie I'm so sorry to hear about all you have had to go through. My prayers are with you.



I know you feel strange in your wig, it is hard to get used to. The more you wear it , the better it gets. I found once I washed mine and played with the style it was better and softer like my real hair.



Today while I was having my treatment , a lady was there talking about her wig. I had no idea that she was wearing a wig. I was really shocked! But she felt really weird in it. And it was perfect for her. Goes to show what it is like on the outside looking in.



Everyone that sees mine thinks I just cut my hair, but I feel very stupid in it. It may be that it is always the same, and I never had the same hair from day to day.



I miss the clips , and styles, and it just feels strange to shower and go. I really miss the blow dryer, and believe me I ran late a lot of days trying to get it "just right" some times only making it look worse LOL.



Then having to let it go and have a bad hair day all day till I could wash it and get it right.



Funny how hair can make such a difference in the way we feel about ourselves.



I'm glad you went ahead and took the picture with your family, it will mean so much later when your little one is grown.



Remember we pass on to our children. They love the fact that we are alive, and really don't care about our hair. I was told that over this past week end by my own children.



Made me think in a whole different way. Hmmmmm this is not all about me, my family and friends love me, and care very deeply about my survival.



And having all new healthy hair has to be a good thing, my hair was really bleached and dried way to much....And I was thinking of cutting it when the big C showed its ugly head. So I have to just sit back and wait, and believe me it is hard.



I can't wait till we are talking about " OUR NEW HAIR " on this board.



My brows are really starting to get on my nerves, and my lashes are so thin. The good thing is only 2 more treatments and then my Rads!



My hope is all the test come back and I will have NED.



Then my new hair and my reconstruction and I will feel good as new. LOL , well as good as a 50 year old can feel.



At least that is what I'm trying to focus on today. In the days to come, I'm never sure of what I'll be thinking. That's what this B/C is all about. Just taking it one day at a time. The good the bad and the ugly.



Just remember we are all there holding your hand in spirit, forever bonded in sisterhood.



Hope all of our sisters are doing well, Special Kaye hope your doing well and are enjoying life the way you want to.



Hope you are seeing the sites. Please keep Va in mind, my door is always open.



My prayers are with you all, to many names and my mind is dead from chemo today. So far I'm doing well. I was there this time for 5 hours. My legs started to jump from the benadryl, so Michael had to run home and get the oxycodone. I would have never made it though if he hadn't. It stopped it dead in its tracks. Best $5.00 I ever spent. Glad it is a generic!



I think the Neulasta shot will be more tolerable this time too. I didn't have this pain med when I was taking that shot before. And the bone pain was bad for me. I take 10 mg most of the time. Every 4 hours on the bad days. Then just go back to Tylenol.



Well , before I write a book, I must close Love to you all.

ML

Happy Friday everyone.
Margerie, happy to hear your treatments are going well.
Lana- Glad you are feeling good. Sorry about the clot in the port. That must be real scary. Hope they get that cleared up fast.
AnnaM.-Hope they find out what the swelling is all about. I would think if your onc. thought it maybe from the Taxol he would have said that. Argh, about his weight comment.
MaryLou-Glad the treatment went well. You are right when you say this is a one day at a time thingy. One day we can feel mad and angry and the next we will see things differently and feel like fighting the fight. Yesterday I was at a support group and being mad/angry were a hot topic. That is such a "normal" feeling in this LONG journey. You don't have to feel sorry to vent here, that is what we are here for. I don't have any recent photos of me. I really haven't taken any since this has happened. I don't even know how to email pictures. I will send you my info though.
Debbie, I am sorry about the platelet count. Glad the port cooperated though. Love your story.

((hugs,)))
Kim

Girls, was your cancer found on the left or right? I posted this on the main forum last night. But I failed to ask here.

Lefty or Right.

I'm right handed also.

ML

Initial diagnosis: LCIS and multifocal, high-grade DCIS on right, DCIS on left.

After bilateral, the pathology repsort said: 0.9 mm microinvasion on right with 2 positive nodes (1 mm and 3.4 mm carcinoma) and DCIS on left with no positive nodes.

Anna

Wow! Its been some time since I have joined you and it reminded me of a college reunion just catching up on all my sorority sisters. So sorry to hear that some of you have been in emotional or physical pain--hate those speed bumps on the journey. Sounds like kids, knitting, sharing on-line and in support groups have helped a lot. What I also notice is that we are progressing and we're thinking about our hair, our weight, reconstruction, and our post-chemo futures.

I just had Taxol/Herceptin #2 and it is significantly easier. Steriods keep me up/wake me up on day 1 and leg pains/flu like symptoms are a piece of cake compared to A/C overall queasiness and the Neulasta nightmare. I still get Arinesp every week for the low RBC. Good news is I am now on weekly Nueprogen instead of the Neulasta and expect I will do well. I am tired but able to work, travel and play. Last week, I fell asleep while my grandson was watching a movie and when I woke up, he had drawn a heart on my head with his markers (washable). It was so sweet.

Since I have always gone bald, I hesitate to let the stubble grow. It is definitely white (not dark red as it should be) and it is obviously not coming in all over, so I keep shaving. Eyebrows and lashes thinning--recommend Laura Mercier brow color--hard powder in two shades with a very thin brush. Lets you get a natural look that lasts all day. My cancer boutique also sells forms.

Everyday is a different one with this damn disease and when I feel crappy, I take meds and know that tomorrow I may feel great. When I cry in despair, I know that tomorrow I will focus on all the things I have yet to do and am filled with hope, and when the disease takes a nasty turn, I turn it over to my experts and try not to worry too much (and take meds). I don't think I ever appreciated the expression "one day at a time" as much as I do now. I feel like I've come a long way since my original diagnosis in September and I can see summer coming when all the surgery, chemo, and radiation are behind me (still have Herceptin and Arimidex, but that's nothing.)

R and R. Will send pix.

Thinking of all of you. This will not define or defeat us.

Nancy

Good morning everyone. Hope everyone is feeling good today. I truly enjoyed the opening ceremonies last night watching it with my dh and my 9 year old. He can't wait for speed skating.
Kaye, thanks for the update. I am sorry your travel plans are put on hold for now.
Nancy, good to see you. Glad the Taxol/Herceptin is treating you better. LOL at your grandson, at least they were washable markers.

Have a great weekend everyone.
Love,
Kim

Happy Sunday. Hope all of you in the East are staying warm and out of the snow. Wow, it looks spectacular. Its been a slow day with lots of mini naps, reading, and enjoying the Olympics.

Kaye, any chance you can find someone to travel with you a little. Its such a friendly group that RV's and always seems so ready to help out. Hate to see you miss Quartzite--my dad used to go there every year.

Debbie, you are so cute. My hair is never going to come back red until my hairdresser makes it that way. Its just that she's been doing it for so many years, I had never seen it white. Not sure what I will do. I want to do some work with the Look Good/Feel Good group and part of that might be letting them see that going bald is an option. Down the road . . .

My wish for all of us this week is that RBC, WBC, and platelets are up, ports behave, we don't ache, itch, burn, clog, upchuck, or run, and that we find something in every day to treasure. LOL

Nancy

I am getting round 5 of 12 taxol + herceptin tomorrow. Had blood draw and BRAC test today. Only 8 weeks left of chemo which sometimes seems like nothing and sometimes it seems like FOREVER!!

Thursday is my funk day, kinda achy and grumpy. I'll just stay in.

Good luck everyone. Here's to progress! And good luck on your PET Kim. I hope your chemo kicked some butt!

Kim I hope you get good news on every single one of your concerns. I'm thinking of you!



I'm thinking of you, too, Debbie. You and I are now both in the eight weeks left mode! at least on the major chemo part. It sounds like you have wonderful friends. People who think to arrange babysitting for you are wonderful friends in my book, that's for sure.



Kaye, I hope you are going to be able to take those trips. I hope you find an angel who wants to come along and do all your rigging and everything to make your trip easy on you.



Margerie, good luck tomorrow. I had Taxol/Herceptin #4 today and am following just behind you. It was very doable. I got my second Procrit shot. Of course now I'm hopping with the effects of the decadron in my drip, but I will take an Ativan after I finish here; that worked well last week.



Did I tell you all I finally got the Christmas tree down? The family room looks almost huge now. Well, not huge, but bigger anyway.



I am spending part of Valentine's day seeing a Lymphedema therapist and I am psyched! Getting some answers and maybe some exercises is more exciting to me at this point than all the Valentines in the world.



Odalys, how are things going? I hope you are back on track and feeling strong.



Nancy, why do you get the neupogen every week? Are you still able to be so active at work? I sure am watching for the bone pain and neuropathy, and I have noticed the chemo nurse asking me very pointed questions each week, but so far so good. I occasionally get weird pains in weird places, but don't know if they are phantom pains or my very own version of Taxol pains.



Mary Lou, I hope you are well. I have gone to two WW meetings and do feel more in control now as I write everything down and am more aware of leaving out important food groups, like dairy and fruit. Also writing down my water intake makes me realize I am indeed drinking the water I need. I used to feel bad about not getting enough, when I actually was. No more feeling bad.



We got 14 inches of snow Friday-Saturday, but all is cleared on our gravel roads and I am happy not to be housebound like I was with the last snow (was it December? November? when was it?) where they never cleared our road and everything turned into a sheet of ice and I stayed home for almost a week.



I will go and try to sleep. I wish all of you a day full of good things and good treatment experiences in the days to come.



Anna

HAPPY VALENTINES DAY TO ALL.......Am half-way thru the chemo experience and am glad it's not as bad as I anticipated. No hair and loss of taste is a bummer, but a small price to pay. See my oncologist on the 17th and next AC on the 21st.

Good Luck to you all!!!!!!!!!!!!

Wishing everyone a Happy Valentine's Day. I was just thinking...how blessed we all are to be on this earth today and be surrounded by friends and family. You are all part of my extended family. Thanks for sharing so much of your self. Sending lots of love and hugs your way!

Hi all. Well, 6th Taxotere done. Feeling ok right now. A little shakey in the legs. I did have an appetite after teatment today, which was unusual. I spoke to onc. about the eye wierdness and he suggested I go to optomologist. He doesn't see it being anything back, could be just a side effect from the Taxotere. I talked to him a little about the what's next. He said it really depends on the PET scan. We could do more Taxotere, a different chemo, sugery, or just let it be and watch it for a while. Who know. Back to the fear of unknowing and waiting. I just pray this is working.
Debbie, I love the idea of cards and gifts. I am game. Just let me know what to do.

Kim

Hi Debbie,
I would love to participate in the card/gift exchange. I sent you an email. I like the white elephant exchange idea.

Kim

I went to Hobby Lobby today and got a bunch of stuff that is worthy of our White Elephant exchange. Maybe we should rename it...."The Pink Ribbon Exchange?" What do you think? I forgot to add that when my Ebay group did this, they also specified that it can most definitely be stuff you already had on hand at home. People were really creative. So let's set a limit of $2 if you are going to purchase something for it, but essentially all you need to worry about paying for is postage.

So far I have Kim and Mary Lou and myself. Let's try to set a cutoff date for our first attempt at this-let's say sign-up by March 1st? I know a lot of us don't check in here every day.

I'm so excited about this!!! I like Mary Lou's idea of writing a few lines to the next person. That way, we can all see how we are actually people and not just identities on BC.org!!!
Ok, I am rambling now. I should stop!
I do have to tell you all about our special Valentine's Day dinner. I mentioned that some ladies from church were planning something for us. Well, they made us a huge gourmet dinner, decorated the house, got us roses, dressed up like waiters and served us by candle light, and (my favorite part) got us a violinist!!!! They were even going to take me to get a manicure/pedicure, but I decided against it because of my blood counts. It was such a fun night.
Love and prayers, Debbie