Dis Breast Cancer Survivors Part III - GAGWTA!

[Sal]

GAGWTA

I have followed this thread off and on and wanted to post, just never did. I am not a cancer survivor, but my daughter is.

Her history:

DD is 8 months pregnant with twins when her husband is set to deploy to Afghanistan for a year. She and babies live with us for 15 months (we love it!!) Son in law comes home safely (thank you God) and they have baby #3.

While breastfeeding this baby, DD finds a lump that is considered to be a blocked milk duct. Exams and ultrasound seem to confirm this. When the lump does not go away, a biopsy is done. Invasive Ductal Carcinoma. We were, as you all have been, devastated. My daughter was 25 years old.

Two years later, she has had chemo, mastectomy, radiation, more chemo and tram flap reconstruction surgery (which included a second mastectomy). She felt great and looked wonderful. Time to celebrate.

October 2009 CT scan shows "an area of concern" on her liver. Our worst fears are confirmed and she is, once again, in a battle for her life. Chemo starts immediately. On Dec 21 she has a PET scan that shows NO live cancer cells. What a Christmas miracle! Two weeks ago, she had a part of her liver removed where dead cancer cells remained.

I can not know what it is like to be the one diagnosed with cancer, but as the mom, I am scared out of my mind. I try to not do too much research on survival rates and make myself crazy, but I do know that once we entered Stage 4, the survival rate is 20%. My family and friends are rejoicing over her "cancer free" status and I am waiting for the other shoe to drop.

I have two DDs and we are extremely close. This DD takes her cues from me and as long as I tell her she will be OK, she believes it! I never let her know how scared I am. At her first diagnosis, we talked about "what if" and how her kids would be taken care if she was not here. After that, we have just made our plans and lived our lives knowing that each day really is a gift.

I do not want to talk about how scared I am to any of my family. To everyone else, I am the "rock". But, I need to tell someone and I see that you are a bunch of wonderfully supportive people here.

I want someone to tell me that she will beat the odds, and no one can.

I cannot bear the thought of losing her.

Thank you for listening and letting me say the things I can not say to anyone else.

Sal

 

[Pea-n-Me]

Welcome to the thread, Sal. I COMPLETELY understand what you're saying. It is so hard to be a rock all the time; sometimes a burden, even. Be sure to take care of yourself. Good to get it out here. What a difficult situation for your family. I was reading some stuff about Elizabeth Edwards which talked about metastasis and what it means, exactly. Which is basically that the cancer is stronger than the drugs it was given to fight it. Truly scary. With that said, it does seem as if there are lots of new weapons in the arsenal, which can hopefully turn a terminal diagnosis into one more like a chronic illness. I'll pray that's the case for your daughter. I'm sure you've given her some peace of mind saying that her children will be taken care of should the worst happen. My twins were 5yo when I was diagnosed and they were what weighed most heavily on my mind. (Many of us here had young children when diagnosed.) Twenty five is so young.

I wanted to post this article I saw today related to paxil and tamoxifin, in case anyone here is taking this combination. http://www.palmbeachpost.com/health...wers-survival-odds-against-breast-221891.html

 

[annrae]

Hi everyone: LMP - we were very fortunate and missed the big storms; we had a bit of snow effect from Lake Ontario but nothing like they had south and east of us. I won't say too much as winter isn't over yet.

Laurie - hope you are recovering well and feeling better
Linda - hang in there - this too shall past (as I tell myself everyday) or I read the Serenity Prayer.
LMP - I did not like my DH travelling at all and that was really one very good reason that I was happy he retired at an early age. I hope everything works out with your DS.
Sal - you are now in touch with ladies who are very caring, knowledgeable, kind and so willing to help in any way so hopefully being on this board will be very helpful to you. How difficult it must be for you!
Ann - so glad Avery is finished with the chemo - he is such a brave little boy.
We will be at WDW and staying at the Dolphin from Oct. 1 to Oct. 10, 2010. Are any of you going to be there at that time. Melissa, I wish you could return so we could spend more time with each other. It was such a quick visit.
Take care everyone and have a nice weekend. Hugs, Barbara

 

[snappy]

I am glad you found us, Sal and decided to post.

We have a varied group here, with many different experiences with the beast.
that is one thing about breaast cancer, it has many different ways of presenting. also, there are many types of treatment and ways that we are followed after treatment.

I guess we can all relate to the fear of recurrence. In a way it is worse than the initial cancer diagnosis as you know how rough the waters are ahead.

Linda brings up a good point that new chemo regimens are continually coming available.

You sound like you have been a huge help to your daughter both physically with helping with her grandkids and psychologically for helping your daughter cope. I will say being the rock does take its toll and it is good for you to have an outlet for sharing your feelings. You are welcome to share them here always. Do you have others in your life that you can share with other than your family? I don't like the sound of being scared out of your mind.

The best support comes from those who have walked the walk. Usually support groups are for the survivor but it would be great if there were more such groups for the family members.

It is actually very good that your daughter is taking things in stride. Do you feel good about her health care providers?

I hear the anguish of a worried mother in your words. This is not an easy role, and I too will pray for you.

Welcome to our group.

 

[snappy]

Barbara, I am glad you missed the worst so far.

I will probably go in October but later, waiting to hear about the RFTC dates.
The Dolphin will be ideal for the Food and Wine festival. I have not stayed at either the San or the Dolphin yet. We were booked at the Dolphin last September but postponed until November and the rates were much higher.

I wonder if Melissa is still having computer problems, she has not posted in a while.

Hi everyone: LMP - we were very fortunate and missed the big storms; we had a bit of snow effect from Lake Ontario but nothing like they had south and east of us. I won't say too much as winter isn't over yet.

Laurie - hope you are recovering well and feeling better
Linda - hang in there - this too shall past (as I tell myself everyday) or I read the Serenity Prayer.
LMP - I did not like my DH travelling at all and that was really one very good reason that I was happy he retired at an early age. I hope everything works out with your DS.
Sal - you are now in touch with ladies who are very caring, knowledgeable, kind and so willing to help in any way so hopefully being on this board will be very helpful to you. How difficult it must be for you!
Ann - so glad Avery is finished with the chemo - he is such a brave little boy.
We will be at WDW and staying at the Dolphin from Oct. 1 to Oct. 10, 2010. Are any of you going to be there at that time. Melissa, I wish you could return so we could spend more time with each other. It was such a quick visit.
Take care everyone and have a nice weekend. Hugs, Barbara

 

[snappy]

Snowing here.

I guess hell did freeze over. Bless you Saints!

They are calling it the blizzard on the bayou on local tv.

Can't believe the saints or the snow.

Not sure what will be next?

Gotta go play in the snow. Good fishing boots (hip boots) weather as we have had so much rain it is snow on top of rain.

Snow dat!!!

 

[KJ Luvs Pluto]

Welcome Sal,

I'm so sorry you are having to go through this with your daughter. For those of us who are dealing with it ourselves it's probably easier on us in some ways than it is on our husbands, parents, children. We know what we have to do and we do it and we deal with the symptoms as they come. For those who have to watch us go through it - well that must be very difficult. This is a great place to ask questions -any questions. There is always someone here who will be able to answer.

Snappy - Enjoy the snow while you can. It probably doesn't happen very often down there. Up here - well we always hope that summer comes on a weekend so we have time to enjoy it

Speaking of weekends - have a great one ladies.

GAGWTA.

 

[snappy]

Yes it has been weird. It also snowed last year in December. I was determined to enjoy it more this year since I just watched from inside last year.

DD14 had fun throwing snowballs at me while I took some pics.

Last year we had a hurricane in August and snow in December. It was a marvel.

Unfortunately, it will stop within the hour. That will be it.

But it is for the best. Tonight's parades are at risk, but tomorrow with sunshine and 60 plus degrees, it will be pefect parade weather.

No precipatation is best for parades, thank you very much.

 

[snappy]

Snow all melted. boy that was fast.

I am so glad I went out when it was really coming down. DD14 and I had a lot of fun, as did Naj.

Snappy, not so much.

It looks like it never snowed now. Just the usual wet grass and puddles.

Maybe I imagined it?

no, I do have some pictures.

 

[Pea-n-Me]

Well show us the pictures, Lady.

 

[wdw4us2]

Sal - Welcome to our thread. I can't imagine what you are going through, but your daughter is lucky to have you looking out for everything.

Laurie, LMP and everyone else dealing with the snow - I feel badly for you. Every time my kids talk about how they wish they could see snow and live in it for a while - I show them news accounts of what it's really like. After I explain how much fun snow shoveling and ice scraping is they lose interest fast. We have been dealing with unseasonably cold weather this year as well as a lack of sunshine. Depressing.

I saw the radiologist on Wednesday. It looks like my treatment will begin on March 8th. He is waiting until I have me scans next week to determine exactly what he will be doing. I saw the surgeon today for a follow-up and he said everything is fine - come back in three months. Those are the kind of doctor appointments I like!

DD is coming home from UCF today. She should be here in an hour. I'm really looking forward to her visit.

Have a great weekend and a Happy Valentine's Day everyone!

 

[snappy]

Lisa, glad your duaghter will be home for the weekend.

I also like the just come back in 3 months comment.

 

[snappy]

Well show us the pictures, Lady.

Ahem. . . afraid I am inept at loading the pictures. It will have to wait until DH can do it.

I guess I should have learned this a long time ago. At least I mastered the posting pictures part. What is that software anyway? I can't remember now, not snapfish.

Ah well, the mind is the first to go, right?

At least we had some sneaux.

Humor me, it is the Cajun spelling of snow.

 

[snappy]

I just remembered. . . photobucket!

now if I knew how to get them from the camera to the computer.

Woe is me!

 

[luvmarypoppins]

Sal - I am so sorry that you have to go through this with your precious daughter. I am sure sometimes you feel helpless, like you are on the outside just looking in etc. But your daughter is so blessed to have you in her life. (I wish I had a hug from my mom during all of this but she is deceased). This is a great place to come and vent, share, cry, be encouraged and even maybe laugh a little too!). Wishing your dd all the best and that her treatments would go well etc.

Laurie - wow snow for you too! Have a great time at the carnival and parades. Which ones are you going to? I read an article that some people spend over $3,000 on the beads to throw from the floats, wow!! Are you going to have some king cake? I hope you find the baby!!

Fl Lisa - hope you have a great visit with your dd

KJ - I am hoping your arm is slowly healing. Take care sista.

Linda - yes, we spoke about this before. I just dont want to go in there sounding stupid and want to ask an intelligent medical question. Hmm, I did actually see their 2008 statistics, 150 patients with thyroid cancer and 11 had stage 4. etc.Crap.that makes me already at a statistical disadvantage

Well ds18 has a really nasty stomach bug, I just so do not want this. I have tried to stay away from him and give him crushed ice,socks, blankets, pillow etc. and he insists on sleeping on the couch by me. Oh the things we do as moms No news from the college. I guess my dinner plans of going out with dh tonight will be scrapped. Oh well.

GTAGWTA. Have a great week end and Happy valentines day too.

 

[Pea-n-Me]

I just dont want to go in there sounding stupid and want to ask an intelligent medical question. Hmm, I did actually see their 2008 statistics, 150 patients with thyroid cancer and 11 had stage 4. etc. Crap.that makes me already at a statistical disadvantage

I know it's hard, but don't think of it that way.

Think of it as having a 93% chance you WON'T be Stage 4. (Dem are good odds!)

 

[snappy]

Maryann, stay healthy please.

The B.R. parade, a neighborhood one in the neighborhood where DD14's school is rolled last night and we went. There were about 15-20 14 year old girls and they had a blast. Also, a lot of adults having fun and I met a few new friends. Good times, good wine and good food.

Dh just packed a van full of stuff for DS21. He is sharing an unfurnished off campus apartment now and needed a bed, desk etc. Dh is going to help them rekey the locks, etc.

Dad to the rescue. Mom here sent frozen spaghetti sauce cartons, ingredients to make chicken burritos, and a fresh supply of chIcken and andoille sausage gumbo (he is allergic to shrimp so no shrimp gumbo for him!).

I also packed a bunch of cleaning supplies for good measure.

We really need to do the Bacchus parade tomorrow night as the Saints quarterback Drew Brees is the king of Bacchus. I am working on DH, it probably won't happen as we both need to work on Monday. We should at least go down Monday night for Mardi Gras day and stay at my friend's house so we can use the ferry to make it to the quarter. I am not sure if it will happen, been there done that, it is more about spending time with friends now and comfort.

I am sure the riders of the major crewes do pay megabucks for their beads, doubloons, and other throws. For the smaller, local ones, the beads are collected from friends from prior years and recycled. They'll buy a few choice larger beads and special throws for family and friends along the parade route.

There are stuffed animals to buy, frisbees with the crewe name printed on them, other small toys and trinkets.

The float riders also spend some bucks on the costume.

The outfits for the balls are even more expensive.

I actually think it is more fun to be a spectator than a rider.

Riding for hours is a lot of work.

The sun is shining today but is is darn cold.

Man, I just noticed how much I have been posting lately. Crazy.

 

[KJ Luvs Pluto]

Maryann - I agree with Snappy - please stay healthy. With your son being sick that's going to be harder to do. Can you wear a mask while you are around him? That would be really hard to do all the time but it might be worth it.

Snappy - I love reading your posts - don't stop now.

Lisa - I saw my radiologist on Thursday. I have to get fitted for the form next Tuesday and then have a "trial run" and then I find out when I start the treatments. I hope all goes well with your rads.

GAGWTA

 

[luvmarypoppins]

I know it's hard, but don't think of it that way.

Think of it as having a 93% chance you WON'T be Stage 4. (Dem are good odds!)

My cancer is already stage 4, so that means its even worse with the rare columnar cell variant right? I guess why the NP said, you are the statistic etc.

 

[honugirl]

GAGWTA! I've been lurking around and reading what's going on with everyone. I'm trying to work through some of my own stuff, so I'm not super good at being a support to others when I'm like that. I'm sorry.

I went to San Francisco to inquire about surgery. The surgeon there was very nice, I liked him very much. UCSF, not so much. Ugh. I think the rudeness fairy has settled down amongst the support staff. I called the Dr. 's office to get copies of my records, they sent me to medical records, who sent me to another medical records department, who sent me back to the Dr.'s office! It's been 2 weeks since I've been there and I still don't have a surgery date and when I inquired about it, basically I was told, take a number and we'll get to ya when we get to ya. Well, I've been through enough that I'm not taking that kind of crap any more.

So I remembered seeing a thing on the Huntsman Cancer Center in Salt Lake City about a month ago and decided I'd call there. They don't have an adrenal surgeon, but the University of Utah medical center does, and they are affiliated with each other. I called and talked to his nurse and I LOVE her! She was willing to pull strings and get me in this coming week! But I couldn't get down there that fast so I'm going to see him the first week in March. I love their facility, it meets my needs really well. Much better than UCSF does, so here's to hoping he's on board. If so, it's going to open up another option that wasn't there before for people with Cushing's, which is exciting. He is a younger, very aggressive surgeon. He's worked for NASA and I believe is an officer in the Air Force Reserve and someday would like to be an astronaut (I'm liking him already!). So I'm very encouraged and it just feels "right". I'm trying to only see the good and I'm trying to think that every thing is going to go OK. His nurse is a colon cancer survivor, so she knows what it's like to walk in a patient's shoes. She also had all her treatment at the same facility, so she knows the ins and outs.

Very busy with my various therapies. Also doing some volunteer work, so that's keeping me on my toes.

I think of you guys often, I just have to go inside myself and internalize what's happening. Once I get through that, I'll be in a better place to be there for you guys.