Starting Chemo March 2015

SpecialK

Thanks all! 

Indy - not aiming for perfect, that ship has sailed - just wanting something resembling a breast at this point, lol!  I appreciate the wish though and hope for that for all of you who are doing recon of whatever kind!

jackbirdie - how sweet are you to say my DH is lucky - I feel that way about him too - he is a keeper.  He has been solid for me in this process, and it has been a long one due to all of the surgery and complications, but he is right next to me through it all.  I know how fortunate I am in that, and I thank my lucky stars every day.

ksusan

My deport experience was the same as avmom's. IMMEDIATE relief of weird neck sensations.

eheinrich

Linda, I totally want to do addresses. Is there a way to do a group PM?

Jackbirdie

I thought Avmom's Nothingburger was fantastic! Best thing since Eileen's teaching me "Asshat"!!!!

I am all in on Christmas/Holiday cards. I already have many of your addresses from the bracelet project. I would like to get the rest of them, but every time I try to think about how best to share the info, my head explodes. Let's do think of an idea. Is it possible with bco pm to send multiple email recipients? If so, maybe anyone that wants a card sent to them could send their address to all the people in our thread..?

Plus the April people like Littleblue, The Princess, Kbee, Lovlilynne? Ksusan is a crossover I suppose but I have her firmly lassoed down as a March gal. Haha.

Ideas are welcome as in fact, my head just did explode. Now I have to clean it up. Goodnight.

Jackbirdie

Haha E- we X posted.

Jackbirdie

I just tried to add multiple recipients to a pm. I couldn't see a way to do it.

rleepac

Great idea but I'm TERRIBLE with sending Christmas cards so I probably won't participate

Nearly every year I buy cards and then don't get around to sending them. It's shameful

Italychick

Could we could use the Facebook secret forum somehow? And then email on here individually to the people that aren't a part of the Facebook group, like Allison? Or pick one person, get a gmail address or something, email her, and then she can distribute to everybody else? I don't mind giving out an email address if that would help the process

shaz101

hi. Just trying to catch up.

Deportation is easy peasy 😀 thank goodness.

SpecialK I'm sending lots of love your way. You are one very special lady xxx

I'm probably too far for cards to arrive in time. 😕

I must get my act together with Facebook. Hmm my account settings are private. So I'm not sure how to find anyone. I remember someone said I should email someone but I forgot. Lmao. Bloody chemo brain.

I'm off to bed. Goodnight all. 3 more days to go.

shaz101

No 6 is very important. I try to do it regularly.

KBeee

in our sept 2013 Facebook group, we have a google document with addresses. I am a technological moron though, so I did not set it up

slothabouttown

I think Facebook might be the best choice. Like Katy, I thought about private message options on here until my head hurt. Like Theresa said, we could fill in by email anyone who isn't part of the Facebook group. I usually only get a Christmas card from my dentist, my insurance agent and one aunt, so this would be a treat!

eheinrich

A google doc is a great idea. Does anyone know how to do that? If not I can try to figure it out. I haven't sent out cards in years, but I always want to. No one else ever cared about the card photo or anything, I finally gave up. New traditions this year. Starting fresh.

IndyGal35

I'd like to do a card list too.

So...I'm sitting here waiting to see a new counselor, and they handed me this flyer:

I HATE the "journey" reference. A journey indicates travel between two points. What I've been through in the past few months can only be termed as a complete and utter cluster

Thinking of each of you and laughing so hard right now!

littleblueflowers

Oh My Dog. The Journey. Next time someone refers to this a s a journey I'm going to start singing Don't Stop Believing at the top of my lungs, kick them in the shins, and run away.

Jackbirdie

yeah, I'm not a fan of journey as a reference either.

So I just had an MO appt. Not great. My liver enzymes had doubled six weeks into the Tamoxifen "journey" . This week's labs showed a 5 X increase over that. So 3-4 times high. The MO thinks it's for sure the Tamoxifen, and I'm to discontinue it immediately. In one month, they'll re-test, and also test my estrogen levels (FH and Estradiol) to see if an AI could be switched to now. If not, ooph may be in the cards. She thinks it was probably contributing seriously to the depression as well.

Also, this pain I've had in the lower left rib area has gotten worse over 3 months, sometimes accompanied by severe cramping type pain across my midsection. It is extremely sharp pain and takes my breath away but doesn't last too long. Since it hadn't resolved over several months, I've been referred for a bone scan next week. Just to rule out, you know.....She thinks it might be a severe muscle spasm with roots in surgical damage. We talked about the other ongoing pain, which seems completely unrelated.

She is happy to continue to support my pain management, at current levels, despite, she said, that many surgeons (including mine, that jackass) deny this kind of pain exists. But she also said she now wants me to understand I may never be pain-free.

So I'm setting up camp here on the ledge. At least a week and a half, until scan results are in, but maybe as long as a month, since I'm now VERY concerned about my liver. Needless to say, tears were shed in the appointment room. I'm home now, got Jack very close.

rleepac

Hang in there Katy! Sounds like they're taking a good proactive approach and scans are a good idea to put your mind at ease and make sure this beast stays controlled. Cyber hugs headed your way!

Bekah

lovlilynne

Hi - popping in to comment on the xmas cards/addresses. So, in the April FB page, we added all our names/screen names/ and address (if you want to be part of the card swap) to a post, and then Kbee (owner of the secret group/page) pinned the post to the top of our page.

I created the Google sheet - this is nice if you have android because you can open it even on your phone (or if you are iOS you can download an app to be able to view Google docs), but it doesn't have our addresses on it - just all the screen names and state/area we are from if it was shared.

It's really easy to create a Google sheet, then there's a "share" function that lets you share the URL and only people who have the URL would be able to find it. You can also save it as an Excel if that's easier for people to read it in. I have saved this file to our FB group page (under Files).

Lynne

pboi

Oh Katy...I am so sorry! I am scooting over on the ledge to come give you a hug and sit next to you. You will get through this. We are all here for you! So glad Jack is there for you!

I'm on an AI and you know I had an oophorectomy. I'm tolerating the AI very well. The oophorectomy was also an easy surgery to recover from. So if those are in your future, you could very well get through with little problems.

Positive thoughts to you on clear scans and decreasing liver enzyme levels. Hang in there, hugs! 💕

PB

Italychick

Damn Katy, after all your hard work to get your liver enzymes under control, now a new drug has impacted them. Sending positive thoughts your way about the bone scan. I had one, the procedure isn't any big deal, but waiting for the results is the sucky part. Fingers crossed it is just muscle spasms. I can't believe the things we wish for instead of the alternative.

Journey, hah! What a stupid word. Somebody tried to pick a politically correct word, there have to be better. I personally like our way of calling it a shit sandwich. But guess that wouldn't look great on a flyer, 50 ways of dealing with the shit sandwich. And the word palliative? How about here, we will give you something with side effects, causing you to take something else with side effects, and on and on. Yep, got the cancer under control. Only problem is, now we are trashing your liver. Hmmm, there has to be a pill for that too.

Next week is going to be a bunch of meetings and conference calls to go over stuff with our new boss. Can I say how bad that sucks? How about let me just continue doing my job and when you see me, just smile and nod

KBeee

(((hugs)))) Katy. I just moved over a bit to make room for you on the ledge. Bring some marshmallows and we'll make s'mores while we camp there tonight.

Speaking of campfires, I just brought in the mail and on top was a f***ing TLC wig catalog. 😡 I added it to my New Years burn pile. I plan to burn my few leftover Tamoxifen then too. You can too Katy. I am having less side effects (so far) on Femera than I did on Tamoxifen. Hopefully the AI will be kinder to you too

ksusan

Sending salutary liver vibes, Katy. I'm glad you have a doc taking you seriously.

KBeee

I hate the term journey too... Journey implies something positive. If anything, I call it a detour. I call it a lot of other things too...

Trvler

It's funny because I have this one friend (and I use that term loosely, long story) and she uses every single one of these stupid comments (which might be why I tend to avoid her a lot lately).

Katy: I hope they can find you some relief. I hate that you have so much pain.

I guess one thing that has been helping me a little lately is realizing that there are many other illnesses that people live with besides cancer. Maybe I am paying more attention lately. My niece has something called POTS…my friend's sister has chronic pain from botched abdominal surgery….the list goes on. And of course diabetes. I was so down having to give myself those GD injections twice a day but my friend did it for years and never complained. (now she has a pump)

I got my Tamoxifen rx yesterday. I am waiting till after the holidays to start. Felt kind of bad telling my husband one of the possible SE's was bitchiness. I know I have been bitchy to him lately but I feel like I have changed a lot on this 'journey' and he hasn't. But our issues are not new. The cancer just made them more obvious.

shaz101

so sorry katy. I hope you back away from the edge soon and drag the rest of us with you.

I lady I met when we both had surgery together sent me this...

avmom

(((((Katy))))). The ledge is a warmer place with you here, but I'm hoping you don't stay long

Jackbirdie

thanks all. I slept all afternoon. Reading your posts just now made me tear up

I think the bone scan will come back clear and the doc is sure the liver enzymes will come down. It's good I did the chemo I think. I may not tolerate the AI either!

It is what it is. My brother called and we had a bit of a heart to heart. He told me he and his wife had already talked and just for me to know I can always go with them if it ever becomes necessary. So I would feel safe. It was sweet. Of course that is a conversation for the future. But it was nice to hear it.

DavisD

Just jumping in to say hi. Something told me to check the thread today, I think of you ladies all the time.

Katy, I can't say how sad I am that you're having so much pain and elevated liver enzymes. You have always been my rock regardless of what I was going through. I'm sitting with you on the ledge and sending you our version of "prayer."

kbee-I got the TLC catalog today too and it went directly in the trash! DH couldn't figure out why that would bother me....I guess we're on different "journeys." ugh! I can't stand that reference either.

Allison-our issues have been amplified while dealing with this past year of BC crap. I hope tamoxifen doesn't adversely effect you:)

Theresa-you're still giving such thoughtful posts...I missed them

I'm finally doing better and feeling like I have my "fire" back at work. The pain I was experiencing hit a breaking point a few weeks ago and I'd decided to quit Herceptin. Met w/MO and I realized it probably wasn't the Herceptin. Met w/my primary who started me on a hefty dose of Lyrica. Had relief by the next morning..maybe it was coincidence but I am so grateful. I'm not without pain but at least now it's tolerable and I can feel joy again! My labs indicated I'm in a "post menopausal state" so I'm waiting to see what this means in terms of treatment.

IndyGal35

Hi, Diane! Glad to see you on the boards! Glad you're doing well with the Lyrica. DH got dx with fibro earlier this year. He has tried Cymbalta, but it's not helping enough. Lyrica is his next step. Are you going to pick up the Herceptin again

DavisD

Hi Lee! Yes I'm back on schedule. Had my Herceptin yesterday during lunch:) How has it been for you? Your DH should definitely try the Lyrica. I tried it a year ago and it didn't seem to help. This time I started on the dose I'd ended on-150 mg twice per day. I was the first to disregard those Lyrica commercials but it's been a lifesaver for me. I hope your DH gets some relief. Chronic pain can be so debilitating.