Starting Chemo March 2015

Jackbirdie

Sue and Beachbum- finally a good SE! How strange and wonderful Sue!

I had a dream last night mine all stated to come off. Yikes.

Bekah, from everything you've shared, you seem to be an excellent mother. You felt moved to say what you did, and I'm sure you didn't say it in spite, or to hurt her. Maybe it needed to be said. Don't beat yourself up over it. We know you are tough, and I bet she is too! So very glad to hear you had a pretty good day. And wishing you a very special Mother's Day!

Jackbirdie

Sloth- unbeknownst, I was right there with you yesterday, and tentatively moving around the same this morning, so sorry!

That is a really cool nest! I have no idea what it is, but as I said to Allison yesterday, birds know stuff, they only make nests in good places. Safe places. Know that there's good joujou around there.

Hope today is much better! Thinking of you and sending a hug

Beachbum1023

Ladies, I think the best SE I have left over from chemo is to be more compassionate, have more empathy, and enjoy each and every day, every thing no matter how small it may be. Pretty bright spring flowers, puppies, a walk on the beach, and sunny days. For that I am thankful that I really appreciate things with a new eye.

For those of you having a rough day, I so hope it gets better for everyone. But this too shall end, and I hope with all of my heart that you will feel better soon! Hugs, Cheryl

Jackbirdie

very nicely said, Cheryl. Sometimes impossible to do, but when we can, such grace is so healing.

SueH58

I'm enjoying the little things today. The bright orange and black Oriole birds have arrived in Wisconsin. They are eating oranges like crazy on our deck rail. They are a true wonder of nature.

Oh, I think I mentioned I went to see my daughter yesterday to pick out a wedding dress. SUCCESS! Anyway, I rode out with her maid of honor who, oddly, is an oncology nurse. I told her I had been a bit queesy and headachy the couple of days before. She asked if I took Zofran and I said, yes, I did take 1/2 a pill. She told me that often Zofran causes headaches. So maybe my headaches aren't a side effect from the chemo, but a side effect from the nausea meds! Interesting.

SueH58

Found the following on Canceractive.com:

Often after a couple of weeks and again around week six, the patient gets depressed. One reason is that lowered blood oxygen levels and depression are directly linked.

Jackbirdie

ahhhhh. Thank you Sue! I knew it was something more than just a pity party!

SueH58

Katy, what is that bird? I don't think we have them here in Wisconsin...

Jackbirdie

Sue- it's some kind of bluejay. Looking for a handout. He's looking right at me! Asking!

I think it's s Western Scrub Jay. He tries to get food out of the feeder for the little birds but he's too big and HD falls and flies off. Pretty entertaining

ninjamary

Can someone please explain to me how she got away with no chemotherapy. I understand no radiation with a double mastectomy. I just don't comprehend how she is cancer free. Do stage 0 tumors get to skip chemo? I had 0 lymph node involvement and am doing chemo but I'm stage 2.

http://www.nytimes.com/2015/05/07/theater/rita-wil...;smtyp=cur&bicmp=AD&bicmlukp=WT.mc_id&bicmst=1409232722000&bicmet=1419773522000&_r=2

sorry for the long link.

slothabouttown

My docs planned to skip chemo until my oncotype score came back at 21. But they were going to do radiation all along. When I ask how they make those decisions my MO always refers to, "the tumor board" deciding. I have a visual of the "tumor board" in my head and it's a weird cross between the cast of "Cheers" and the cast of "House"

Also, I wouldn't be surprised if maybe Rita Wilson will have chemo but ust wants to be more private about it?

Jackbirdie

of course I wish her the best. But I no longer believe anyone who has had cancer is ever "cancer-free" again, at the very least it's never out of your mind.

I thought having a double mastectomy would save me from it. Oncotype said no. Who knows if there's still some denial going on, but I do think it's a bit of pink washing of the type I think very dangerous.

Newly dxd women will remember the celebrity stories and not take their own research seriously. The big takeaway in the beginning if the Rita Wilson story was the info she shared about getting a second opinion. Not from a surgeon or MO. From the pathologist! The biopsy was what changed. She was saying up yo 50% of biopsies were wrong. False negatives. That message seems to be going away and being replaced with cancer bring a wonderful journey that makes you a better person and your husband love you more. What a crock of shit. Somebody got to her.

And on Mother's Day no less.

Thanks for sharing this NinjaMary.

molly1976

I have an older friend (in her 60s; I am 38) who had a lumpectomy and radiation but no chemo. My breast surgeon told me her age made it more likely that the cancer was less aggressive; she told me women my age almost always get chemo because we tend to be higher grade. Rita Wilson is almost 60, so it would make sense maybe she was just Grade 1 with a low oncotype and did not need chemo to feel like she was in the clear.

ksusan

I have a colleague who had a mastectomy on the side with a tumor and a prophylactic mastectomy given her family history on the other. No lymph node involvement. She had no chemo or radiation, just hormone suppression, because for her oncotype the benefit of chemo or rad was very low.

The bird up there is a Steller's Jay. My yard is full of them (and Western Scrub Jays as well).

We took my mother- and sister-in-law to Outback for Mother's Day yesterday, and sent my mother a package. Both MIL and mother have had cancer, so they're being very accommodating of my energy level. Mom just sent me and my wife a little spending money to get ourselves something enjoyable on my next chemo day. I sent her close-ups of a lot of flowers and leaves that I took walking from campus to my car a couple of weeks ago. She lives in the east and envies our Left Coast rhododendrons.

Jackbirdie

thank you ksusan for the bird identification! We are friends now so I should know his name.

I put some food out on a post behind the house so the bigs and little scan each have their own space.

ninjamary

Thanks all. I agree that it is very dangerous. I got really pissed off at Rita Wilson's story. It makes it sound so easy. Get a full mastectomy and you're good with perky new boobs. Hooray!

My mother had breast cancer (1984). Partial mastectomy, lymph node removal and radiation only. She died 3 years later. It's weird that I got breast cancer also since I am not a carrier of the BRAC1 and 2 gene. Shunning chemotherapy wasn't an option when I found that out. Her doctor said she didn't need chemotherapy also. Crazy.

Jackbirdie

NinjaMary- that was indeed a bitter loss. And must hurt especially so to have that article published today

SueH58

My grandmother died of BC, and my mom Was dxd with a 1 cm IDC 30 years ago. She had a MX but no rads or chemo (way before the days of genomic testing). She's still golfing and snorkeling today. So I'm very optimistic of early stage BC. I'm 3rd generation and no gene mutations. Very strange.

My understanding is that most DCIS (stage 0) patients don't get chemo. And a whole diff Oncotype scale ( ie chemo not needed til onc type of say 34+.)

Carrie37

I am glad I'm not the only one slightly annoyed by the article

DavisD

im just wondering if Ms Wilson had DVIS like I did in 2011? You always have to dsy yes to the BC question even though it hasn't left the milk ducts. I had grade 3 and a MX no talk of chemo and no rads unless I hsf a lumpectomy. I agree the article really glamorizes BC and wraps it up in a tidy and pretty little package.,ugh,,........,.

SC_Coqui

My original diagnosis was DCIS since they didn't know there was a lump there as well. The plan was to have a mastectomy and move on With no chemo. It all changed after they found a lump during surgery and 2 of the 6 nodes came back positive.

Jackbirdie

I find it an absolutely terrifying disease. They don't know much. They don't agree on much. It's not like you can just get the facts and make the best decision for you. The facts are a moving target.

Jackbirdie

but we are just supposed to be strong and optimistic and not show fear. Such bullshit. I'm afraid. I'm afraid for my friends. The ones who have if and the ones that don't.

Sorry. Getting a little dark in here.

DavisD

Had to go to bed while my son was still here. Really sucked but I became nauseous and dizzy two bites into dinner. Now I feel the same after two doses of Compazine and the s strong pull to close my eyes just looking at a screen. Turn off the screen and can't go to sleep. . Very similar to the drowsy episodes while driving. scary stuff. Hope you all have a restful night.

eheinrich

It's a dark day on the board. I'm going to share happy news. My younger daughter who lives in SF is graduating this month. Friday she was hired at a Michelin 3 star restaurant starting in June (hospitality/hotel mgmt major) - super excited. Last week she told me she had a Mom's Day present coming for me Sat that I had to sign for - arriving around 2-2:30. Aaaaaaaaahhhhhh - it was her! Alan and Shana showed up on my doorstep Sat afternoon. Had a really nice <30h with my baby.

In the stupid part of the day, my MIL was by for brunch and dinner - at the house almost all day. Did not even once ask how I was doing. Nor did she wish me a Happy Mothers' Day (her thing as she explained years ago was that I wasn't her Mother so why would she wish me a happy Mothers day so that wasn't a surprise, but it still pisses me off every year). I was hiding nothing - bald head, one tit and limping a bit from bone pain.

Italychick

That is so awesome about your daughter! And what a great surprise. My daughter and husband connived against me lol. I went for bike ride, was having a pity party sitting watching tv, and my kids and grandkids all showed up with food and presents. I had to put a bra on lol. But a great surprise.

Everybody at work is sick, and I think I got a bit of an intestinal thing because it is all gut related, doesn't feel like chemo side effects. But almost gone now. I did have to ride shorter by six miles today, but I was still able to ride at least.

Think my pinkie nail might be lifting so I'm going to keep my nails cut as short as possible. Oh well, two more rounds to go. I think I can make it.

Trvler

Sue: I LOVE IT!! FINALLY a good SE of chemo!

Jackbirdie

Eileen and Theresa- what nice surprises! Thanks for turning the energy around here!

Eileen I loved that you went commando, boobless, and limping for your mil hah! Made me lol.

Theresa- what wonderful connivers. Sorry a little shorter on the ride but still way more than I ever imagined anyone could ever do. You remain my hero. And you are on the home stretch. Hope that stomach thing clears up completely and today.

It is my favorite time of day. Between 5-6 am. I have the heating pad on, Jack sharing, so we can have all the windows open. All I can hear are the birds waking up and the choo choo train going through down by the bay. It's really quite wonderful

Trvler

Sloth; I hope today is a better day.

E: So great about your daughter coming home! Best possible surprise.

Bekah: NEVER feel bad about being happy. EVER. EVER. WE NEED HAPPY!

The whole celebrity with cancer thing drives me crazy, too. But I am more bothered by Angelina making everyone who is BRCA + (and even women who are -) get a mastectomy thing . I think it has carried over into the DCIS and LCIS and women who don't need them are getting butchered needlessly because it's the in thing to do. The Wilson story isn't helping. I get her message. Get a second opinion. (Don't even get me started on bringing Obamacare into it all.) I agree it's an important message. But I am with you, Katy, on the whole cancer makes everything better BS. There was a study not long ago saying that BRCA + women only had a much higher rate of cancer if their mother's got it by a young age or something along those lines. The rate of people who got it when their mothers were diagnosed over 50 was not much higher than the general population, but you never hear about that. I am estimating these stats. I will never find that article again. But you get the idea.

I was feeling crappy this weekend but feeling better today. I know each day until the next spa I will feel a bit better. What is getting me down is that my tumor does not appear to be shrinking AT ALL. If anything, it feels bigger to me. I asked my MO Tuesday and she said AC doesn't typically shrink these types of tumors. SO WHY THE F DIDN'T YOU DO TAXOL FIRST exactly?

I am terrified of starting Taxol next week.

We went to my mother in laws yesterday and my sisters in law with their mostly grown kids all around 20's were there. You could literally see the look of terror in their eyes when I walked in the room, not sure what to say or do. I felt kind of bad for them but had to laugh a little bit.

So yet again, one of my favorite TV shows has someone dying of cancer. There are f-ing 2 episodes of Mad Men left and the wife was diagnosed with lung cancer and told she had less than year. Just can't escape the f-ing thing ANYWHERE.

Jackbirdie

Allison- ugh- annoying and scary right now. I think the Taxol might be a little easier on you, sure hope so. I wouldn't have wanted to be in that room with all those scary eyes and nothing to say. And TV not safe any more either. Swell.

I think keep your eyes on your birdie friends who are building LIFE.

Thinking of you. With a gentle hug.

K