Starting Chemo in JAN 2007

IowaCindy

I went back today for more tats and a confirmation of the prep work, positioning and all.

It was an emotional moment when I stood in the changing area and looked at myself in the mirror - mastectomy scar, tats, marker lines all over my treatment area. Brought back that very vulnerable feeling I had the first time I stood in front of the mirror and looked at myself after the mastectomy.

While I'd have to give myself a B+ for overall "positive attitude" (I'm so sick of people telling me how important that is, people who haven't been through this or anything similar) since this all started last fall, this week I'm feeling very much on the edge of an cliff.

Tomorrow's supposed to be a lovely day here in Iowa. I may take a blanket to a quiet park and spend some quiet time away from phones and distractions, giving myself the opportunity to cry/pray/meditate/cry - did I write that already?

I'm still trying to sort out exactly what's got my emotions in a twist. But I do feel fragile right now.

Damn cancer.

Cindy

Robbin65

Quote:

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There are times when I have seen women who look at me in my scarf and there is an awareness, I imagine sometimes that I can see a very personal memory in their eyes. Those are the women who have a sweet smile to share.

---

I know exactly what you mean!!!

Sometimes there will be a woman looking at you and you can tell they want to come over and talk to you and tell you that they have been through this. It's a werid cool feeling.

On another subject...GUESS WHAT. I JUST TOOK A BATH AND SHAVED MY LEGS....

My last chemo was March 29th....

viddie

Hi all,
Melia,
I have not had any joint pain yet. I do work for WW, but I took a leave of absence until after my surgery. I miss it though. Believe it or not, a whole bunch of us from WW are going out to eat at Outback on Monday night. Everyone orders a steak and we split a few desserts. We are so bad- and this is right after a meeting.

“I also think that a lot of people are just naturally clueless and will accept changes in appearance (like a scarf) as a personal quirk or fashion statement….they will not like to assume that something BAD has happened and thus do not think to ask. On the other side of the scarf, however, we feel like we have CANCER PATIENT written in large purple letters across our foreheads and are surprised that others can not see it. I think that people are blind to things that they do not like or can not accept, and that it is nothing personal…just a coping strategy.”
Rebecca,
I love your explanation. It makes me feel much better. Thanks.

Mary,
I am sorry about your BIL.
Caya and Jan,
Congratulations on finishing chemo. You have to celebrate when you are feeling better.

Lynn,
I hope that fog burns off soon.
What BS are you seeing? I made an appointment with Dr. Staradub. Dr, Houlihan cannot see me until July and I cannot wait that long. Hopefully my surgery will on August 6.

I finally had my visit with Dr. Lee, the plastic surgeon today. We liked him. He did say though I will only have enough fat for 2 B breasts. I have DD now, and wanted to have at least 2 c’s, but I decided that the Diep surgery would be worth it, even if I only have 2 B’s. I always wanted to be smaller anyway and now I will get a tummy tuck—so I am going for it- no looking back. He told me not to lose any weight. Another added bonus! I asked him how much he thought my boobs weighed. He said around 3 lbs total. So I will lose 3 pounds, have new “perky” boobs, and have a tummy tuck!!!!! What a nice way for a new beginning after all this chemo crap!!!

Viddie

viddie

Tina,
Thanks letting us know that the weight will come off after the taxol is over. That is encouraging news.
Robbin,
Wow! Hair- That’s great!!!!

Cindy,
This cancer thing is definitely an emotional roller coaster. You should take the time to cry, pray, meditate, cry. We deserve that. I think that is very health to do. Your emotions are in a twist because you have been through a lot of stuff. You wouldn’t be normal if you didn’t have those feelings. It is okay to feel fragile. For me, a good cry makes me feel so much better. I have good days and bad days. We all do.
Hopefully as we near the end of all this stuff, we will all have better and better days. We will have some good memories of our positive experiences during this time, and hopefully the other not so good memories will diminish in time. Our best memory will be this wonderful group of women we met online who became our dearest friends. That memory will bring us endless smiles. I hope you feel better tomorrow.

Good night,
Viddie

Nancyab

Hi, wanted to let you all know I am still here before crash day tomorrow. I have 3 more treatments!!! Getting there, yeah. Mothers day may be hard tomorrow, my one DD is in Tucson and my other DD works in a restaurant that will be open extra hrs for Moms day so she has to work. I asked DH to have his parents over and grandma and cook out. we can sit on the covered deck and I can take it easy and listen to the old people crab. Sounds like entertainment. I may take a major pain reliever first. Don't get me wrong I love/hate my in-laws, they can be very caring and on the other hand be mean. Depends on where the moon is in the sky I guess.
Ladies have any of you taking weekly taxol ever notice it making you really grouchy? The first night after treatment I feel like I could blow. I am scaring myself. I get furious at dirty dishes, over loaded trashcans, arg! Such stupid little things. maybe it's the steroids. Then on Saturday I have heartburn so bad I can hardly breath. Can't wait to feel good again. I have the relay for life next weekend pray for good weather, I hate gloomy rain! I'm doing this for all of our daughters and grand daughters and everyone. I know that if my mother had the treatment and meds that I am getting her battle would of been so much more comfortable. I credit the ACS for these advances. and I pray that with more help and research our children (if they are aflicted God-forbid) will have even better results! This relay in my little city has raised 22,000 so far! Isn't that great! Stay well and happy I'll be lurking the next few days.

Lynn12

Hi Girls,

Mel, I like your idea on hiring a maid, just do it. DH has really picked up most of the slack at my house and I am so thankful for that. He always did tons of stuff around the house anyway. I do think I’ll hire in Merry Maids to do a thorough cleaning though. We got a coupon in the mail and have used them before.

Speaking of women wearing scarves. Other than the Onc’s office or hospitals, I don’t believe I have seen one woman wearing a scarf since I have been. Hmmmmm. I really don’t think it’s that I’m not seeing them, it’s probably more that I don’t get out of the house and go as many places.

Amera, your encounter is very humbling!

Mizsissy, that’s an interesting point. Yes, we will all die someday, but I guess I just don’t want it to be breast cancer that I die from. I do think we are all doing everything in our power and I am so proud of all of us. We ARE fighting! J

RobbinJaye, glad you got your first week of rads done. I’ve had to shave my legs too! Although the hairs were really sparse and short.

Cindy, that sounds like a lovely idea, take some time for yourself to reflect. Emotions come and go so easily. Sometimes I feel so helpless in all of this cancer stuff. Although I am doing all I can, I hate it. I don’t like feeling like crap, I don’t like the way my body is, I don’t like the fact I had this huge tumor and no one could feel it. I don’t like..I can go on and on. But I am alive and have a good prognosis. For some reason this happened to me, I will never know why but I’ll go on, with my loving family and friends (and of course all my sisters here). It’s really hard to explain to anyone else, even dh. That’s why you girls are so important to me, you understand!

Viddie, YAY for you, I’m so glad you decided to go with Dr. Lee. You have a small body frame, you will look FAB in B’s! J J I’m seeing Dr. Houlahan in September, my surgery isn’t until December because I need to wait 5 months after rads is finished. I’m so happy for you!.

Nancy, sorry your daughters can’t be with you on Mothers Day. We’re hoping they are the caring in laws tomorrow.

Today is day 5 from my last chemo. Finally off the steroids and feeling a bit less foggy, I can tell that I’m typing better. My oldest daughter is coming home today to take me shopping. My mom wanted a lawn mower (of all things) so my sister went and got that, I just need to get a small something for Mom to open and get something for my sister, and cards. We’ll then go have a late lunch. I’m going to try not to overdue. We’re going to my sisters house for Mothers Day so I don’t have to do anything. Well, I’m making a macaroni salad, but that’s nothing.

Yikes, guess I got rambling! Have a great day!

NOLONGERREADINGORPOSTING

Well, I guess my death post was a real show stopper...didn't mean it to be. I really didn't mean at all it was time for everyone to give up and die, just that it is important to have your spiritual house in order, cause you never know!!! Actually, I think once you do this you enjoy life more. There was a very important woman in my life, my husband's grandmother, who was extremely spiritual and loving to us. We were very close, and she used to write us sweet letters every few weeks, telling us we were in our prayers, and asking us how to pray for us. Strangely, nearly everything we told her, once she started praying, came to us. We thought she had a special connection upstairs. But she was very strong spiritually, and now I feel spiritually strong too. She died a couple of years ago, and before she died, she told me she wasn't going away, but that we'd be close again, but not on earth. She was the one who warned me my life was in danger before I got BC.

But since knowing her, I am not afraid of anything...

Mizsissy

TPPJ

Mel, I totally agree....cancer does = DYING in many peoples minds. I know I didn't have a corner of a clue about how cancer worked prior to my crash course.

Amera, you're gas station story IS a huge wake up call. For me too. What a cross to bear for that guy. A couple of years ago, I was pumping gas and a woman next to me drove off w/the hose attached. I got sprayed w/gas. I was very lucky nobody was smoking nearby, etc. Luck was on my side that day.

TPPJ

QUOTE: you can tell they want to come over and talk to you and tell you that they have been through this. It's a werid cool feeling.


It is a good feeling. I've had that experience. It's one of those things you'd never expect you'd experience... it's a knowing feeling that only a certain few have...

RobbinJaye, never heard anyone so excited about shaving their legs! Good for you! It's the small things, right?

TPPJ

Viddie, the other nice thing about doing your DIEP after chemo is that the chemo isn't going to blow the results of the free tummy tuck. That's what happened to me.

I'm all for a smaller "set". I think it makes you look thinner, you can wear more shirts, etc.

Cracking up at what the WW ladies REALLY DO after work! Ha-ha!!!

mer1957

Every day I have to chose to trust what God sends my way. It's not easy and it is a daily struggle but once you realize you are not in control of it, it makes you free.

My BIL went to the hospital yesterday because they could not control his pain. He held out as long as he could to be at home with his family. Please keep him in your prayers.

I called the dr re my drain and she had me come in but everything is ok, just a little irritated. I am sick of carrying it around with me, but whatever -- I'm going on with my life. I'm going back to work on Monday - just as I was getting used to being at home. I told them I'm not overdoing it and that I will have dr appts and rads and I'm not lifting anything heavy. The other secy quit and another one is going on vacation.

My son from Houston is home for the weekend - that's nice. He sounds a little homesick -- thinks maybe in a couple of years he will want to move back closer-- if there are any jobs in the Midwest!

I had someone come to the door from a neighboring church wanting to know some prayer requests. I told him I belonged to another church but they could pray for me for my cancer. I got a little bit of a turtle face! I guess he wasn't expecting to find someone with no hair answering the door.

Tonight I am going to a surprise birthday party for my godmother who turns 70! She will really be surprised to see me because she called wanting to come visit me and I told her I would call her back -- I didn't want to give away the surprise. Tomorrow we are going to the Detroit Yacht Club for brunch with my oldest son's girlfriend's family so that should be nice.

I wish everyone a Happy Mother's Day. If you are not a mother, I am sure you use your mothering skills on your pets, your nieces and nephews and friends. Enjoy your day and take it easy.

meliaanne

Good Morning All,
Skye; you are a published author!? Did I miss that earlier? Looks like you have done several books? I am overwhelmed!

Thanks all for answering my question on how you found your bc. I think what alarms me is how careful we all were, and we still ended up where we are. But one thing I tell myself almost daily is that at least it was found. Some cancers are not as easily detected. For whatever reason, this is the hand we have been dealt, and there are so many worse things that could have happened. Hard to remember when I am tired, look in the mirror at my scar, bald head, dark bags, no eyebrows ... but I clean up nice! I am getting good at makeup and I love my wig ...

Mary, I am so sorry about your bil. This is so hard for your family.

Viddie, you are brave to have reconstruction. I cannot bear the thought of more surgery ... maybe that will change someday. Enjoy outback!

Mizsissy, I don't think your posting was a downer at all. I think we all need to face death ... this was just a shock, at least to me. I feel I have so much left to do.

RobbinJaye; hair, wow! What a concept. I actually think I have fuzz coming back, even though I am on weekly taxols. I have read that can happen. It's hard to see / believe so I haven't said anything to anyone yet.

Nancy, I haven't noticed grouchiness after taxol, but I can feel myself getting gloomier the longer I feel sick. So I am trying to treat myself to outings, little things that cheer me up.

Cindy, it's hard not to be sad and depressed when we have felt so punk for so long. Sometimes a little solitude is good. I hope you feel better soon. I know I am so used to feeling great that six months now of feeling ill is taking its toll on me too.

Mel: hire a maid! I have had a lady who comes in every other week and does a thorough cleaning for years. It is an indulgence, but one I refuse to consider giving up. And I am so grateful right now that I do have her. It takes the worst of the pressure off. I can maintain, but a thorough cleaning is beyond me right now.

I am meeting 7 other women from the board to day for lunch and am so looking forward to it. This is our third get to gther, but there are a couple of new ladies joining us today.

happy Mother's day all ...
Melia

NOLONGERREADINGORPOSTING

Mary, I really like the way you put it

Quote:

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Every day I have to chose to trust what God sends my way. It's not easy and it is a daily struggle but once you realize you are not in control of it, it makes you free.

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Your words are much more upbeat than mine, but it's the same idea.

Sorry--didn't mean to shock anybody. Hate to even say the word again, but I've lost a lot of those who were closest and dearest to me, especially this past year so I've had to come to terms.

Mizsissy

jonimb

Hello all:

Well yesterday, May 11, they confirmed that I am Stage IV with mets to my liver. I think I knew all along, but to be told is still frightening.

I was on 6 rounds of FEC, the liver met was 1.5 cm, but the FEC shrunk it to about 3 mm. They say that right now I need a chemo break, so they are trying me on Tamoxifen for a few months. I will be going back to the oncologist on June 8.

The oncologist said that the liver met did respond well to the chemo, which he says is a good sign. I'm not sure because I'm so upset.

I feel like my life is over...do you have any words of wisdom for me?

Thanks.


Joni (Chestermere, just outside of Calgary)

NOLONGERREADINGORPOSTING

Joni,

This is devastating news and I know you must be in shock now. But this is the time to get those boxing gloves on and give it a fight!!! I have another Stage IV friend so I know what you are up against.

IT is terrific that the chemo is working!!!!

What about that trial on DCA that is going on at the University of Alberta? You know, this is the cancer treatment that heals with cancer cells and causes them to die without hurting the good cells. Have you thought of checking this out?!

We are with you every step!!!!

{{{{{{{{{Joni}}}}}}}}}

Mizsissy

mer1957

Wow, Joni, I cry with you! There is hope. Look how much chemo did to shrink it! I know no one wants to think of going through chemo again (after a break) but we do what we have to do. A personal trainer at the gym was Stage IV three years ago with lymphathic cancer surrounding his heart. He had chemo and internal radiation through a clinical trial and is well. I'll be on my knees praying for you! Let us know if there is anything else we can do.

Lynn12

Oh my Joni, I'm so sorry to hear about the news. I wish I had education in stage IV, but I don't. That the tumor shrunk from the chemo is good news.

I CAN say that we all love you and will be here with you. Don't look at your life as over as it's not. You have a wonderful husband and family and friends...so take the break as your Onc suggested and see what's next. I wish I was there with you to comfort you, know I'm there in spirit.

love and prayers,
Lynn

Dar1

Dear Joni, I am so sorry to hear this. This is not fair.

I believe you said that the cancer was highly estrogen/progesterin positive - the Tamoxifen and/or AI may do as much or more for you than the chemo.

You are in my prayers -

luckymel

Dearest Joni,
Your life is by no means over. I know that to be told you are stage IV is devastating news, and I can imagine how scared you are right now. It's ok to feel your feelings, but I know you well enough to know you will pick yourself up and come back fighting. There are lots of good tools to beat this thing. RFA works great on liver mets, and since you will be on tamoxifen for a few months you (and your onc) will have plenty of time to investigate clinical trials and find the best way to fight this. Remember, stage IV isn't a death sentence, it's just a chronic disease. We are all here with you, we all love you, and we will help you LIVE with your chronic disease.

Massive, gigantic hugs,
Mel

skyedivine

Joni, we are all with you here. The big difference between the first chemo and the second is that this time, you know for sure you CAN do it. And that you have your own support team rooting for you all the way. And we will want to hear it all.

Melia, thanks for asking everyone to post their discovery stories. It was so interesting to hear all the individual ways the lumps were found. And yep, I do have a bunch o' books out there, with another two that are finished, one due out in fall and the other, early 2008 from a NY publisher. I'm working on a second one for them, due aug. 1, and also have a finished YA fantasy novel making the rounds of some agents. I have another contract too, I'm trying to farm out part of it to a co-author as I know i have to cut back somewhere to make the lifestyle changes I need to stay healthy.

Mary, so sorry your BIL seems to be at the hospital stage. Praying for him and all your family.

On posting "negative" feelings, just bring 'em on, ladies. This is where we get to do that. There is absolutely nowhere else I would feel comfortable saying that I have wanted to ask people if they've never seen someone with cancer before (just the ones who won't stop staring which thankfully is rare). But feaers, morbid thoughts, rants, nothing should be taboo here. Otherwise this would be a fakey conversation and would have no power to help or heal. I have observed that we are collectively quite good at balancing the + and - columns of life and that we laugh as much or more than we cry. I have come to love you all and I don't mean that in a merely mushy way.

Heading out to deliver Mom's Day flowers to the dh's mom and mine -- Skye

IowaCindy

Yeah, I can only imagine what a roller coaster your emotions must be riding right now.

I can only echo what the others have said. The break will allow some time for more research. Your onc sounds hopeful and positive.

And....you are NOT alone.

Hugs, positive thoughts and fervent prayers from Iowa!!!

Cindy

IowaCindy

I know that my emotions are triggered by this unexpected side trip into the world of radiation. I hadn't been expecting that.

Thursday night after I received my first markings I dreamed that I was moving forward on my hands and knees but what was underneath me was invisible. I couldn't see what supported me, I couldn't tell where I was going. Very symbolic, I know.

Lovely weekend to all!!!

Cindy

Amera

Joni, I'm not sure what to say. You are one strong woman and you know that chemo is working for you. You also know that you can get through chemo as you have done before.

Iwill be thinking of you and sending positive thoughts and hugs.

Caya

Joni,

We are all praying for you - We will be with you every step of the way. Do not give up hope, there are new discoveries every day. Your onc. sounds very positive, and of course it's a great sign that the FEC shrunk the met alot. I read about liver dissection on the Her2 neu support group website - it was very successful for the gal who had it. Of course I don't know if this would apply to you, but there are lots of encouraging stories out there.

hugs and prayers from your fellow canuck
caya

Robbin65

Post deleted by RobbinJaye

Robbin65

Joni,

Prayers are being sent out for you in my house!!!!!!!!!!

RobbinJaye

Nancyab

Joni, Don't give in, we are all supporting you! Now is the time to give that cancer a good kick in the *&%! I know you don't deserve it and it pisses me off that you are handed this. But we are loving you and supporting you and if I could be there to hold your hand through this I would. We are praying for you.

NOLONGERREADINGORPOSTING

Joni,

Here's a recent post from a lady who was dx'd Stage IV two years ago and now has a totally clean pathology report after 30 lymphs nodes were dissected:

http://community.breastcancer.org/ubbthr...;gonew=1#UNREAD

I think if check out some of the other threads in her section, you'll see that a lot of women are winning the battle. There's a lot of hope and a lot of strength there.

Mizsissy

meliaanne

Joni,
I just got home from a day out and saw your news. I know this must be frightening to hear. But I believe that this is a chronic disease, and the fact that the chemo shrunk it so much is wonderful. We will all be with you in spirit and we want to hear everything. I wish I could help in a more concrete way, but prayers are going out for you from San Diego, along with much love.
Melia

Rebecca

Oh Joni

I give you my tears, and I give you my love
You can do it, and we will all help.

In 10 years you will look back and smile.