Starting Chemo March 2015

slothabouttown

Eileen, PM me your address for tomato seeds if you want to get in on that!

Trvler

I think the insurance thing would only be an issue at smaller companies. Theresa, how many employees are at your work?

SueH58

I chuckle with visions of y'all applying coconut oil to your incisions and then licking your fingers! I guess I should try it--hate to be the last woman out!

I have been using miaderm lotion (with canendula), Aquaphor and also Triple B cream. The weekend off does seem to help, and I'm applying at least 3 times a day. I'm also going to venture out for 100% aloe. KATY - Good to "see" you!!! I've had 15 of 26 whole breast rads, and will then have 7 boosts. So still 3 1/2 weeks to go. It does seem to be moving along, though.

Many companies are self insured, so the claims determine future rates. I'm surprised (and shocked) they would say it was because someone had cancer. Talk about pointing you out! Very tacky.

I've been busy with my daughter's wedding last week, which was beautiful, and now being back to work. But I think of you all often, and miss not being able to keep up with things as closely. Take care of yourselves!

Jackbirdie

I have been in touch a bit with Sharon. It's her story to tell, however, since she's shared most of it here, in bits and pieces, I'll say this: She really could use our positive thoughts directed her way. She is very fond of everyone here in this group, and the support means everything to her. She has nothing like it at home, but I think the time difference and the fact that she has returned to work, and the pain she is in make it even more difficult for her to be present here. And there is no requirement to be so. She is such a lovely person, and has said many times how she doesn't like to be complaining. That she was never like this before. So she feels bad and goes down the rabbit hole. After all she's been through, lumpectomy, with the SEs and horrible migraines during chemo, (remember she did TAC all at once- I can't imagine anything rougher) then rads, then the RA dx, and instead of being done she now finds herself unable to live with the fear of recurrence.

She has done her homework and understands all the numbers. But because she tolerated chemo so poorly, she wants to do everything she can not to go there again. She knows there are no guarantees and making the decision has taken the piss out of her. She is still in her 40s and feels it is important for her well-being to go for reconstruction as well. She has wrestled with this decision with virtually no one to talk to about it. She is aware of the pain a lot of you are experiencing. She feels so bad for you, and frightened for herself.

She knows this decision will extend her stay in cancer tx land a lot longer, and she wants to get on with her life. She doesn't know when she'll be able to get her surgeries scheduled, or how long recovery will be for her. She has learned from her past experiences that expecting a complication-free recovery could lead to more disappointment.

She is terribly concerned that this will affect her travel plans and coming to our March reunion. She is torn apart by this as it meant so much to her. Not just to meet these people who have become so important, but as a turning point in her life where she begins to fulfill dreams that have gone heretofore unfulfilled.. Nobody in her physical presence there understands and she is all alone, wrestling with this.

I have told her that she is loved and respected unconditionally here. (As all of us are) That her health and putting herself back together is far more important than a weekend in March. She is welcome in my home any time she is fit enough to come, and I will do anything I can to arrange visits with all of you whenever that happens. She needs to hear it's ok from those of you planning to attend. I know she would appreciate any words of encouragement posted here or in a private message to her.

Sorry for such a long post. (And apologies to Sharon if I have invaded your privacy.)I believe she is just too overwhelmed to say it all herself, but would want you to know.

SueH58

Katy - Yummmm! Kings Estate Pinot Gris is one of my VERY favorites. Kinda pricey here (i.e. $15)--how 'bout out there? The Salmon looks great took. And, of course, hugs to HRT!!!

Lee (Indygal) - Are you on the roster to get the bracelet through the MW tour???

SueH58

Katy - forgive me if this is prying, but did you decide to pursue any additional surgeries?

Hope you're doing great,

Sue

SueH58

NinjaMary - when did you burns start to become noticeable. After 15 treatments, I'm pink and have some little itchy bumps. But I know the first 2 weeks or so are usually pretty non-reactive.

I hope you whiz through your next 7 treatments. And try to hang in there!!!

ksusan

I'm very happy to give up my turn at the March bracelet in service to getting it to Sharon more quickly!

Italychick

As far as I am concerned, the March date for the get together isn't set in stone. We can bump it out if that makes it easier for Sharon to come!

Allison, we have 60 U.S. Employees, about 600 worldwide I think. But the policy I am on is for U.S. Only.

Jackbirdie

T-I thought you, everyone, would say that about the date. If she's still speaking to me I'll tell her. She felt so heavy hearted about this.

Avmom- great to see you here! Happy Thanksgiving to you. I hope the family time is memorable. I'm glad you had your first counseling appt. I would give it a good try, but if the fit still isn't right, I would try another. The chemistry is important because it's so personal. I don't know if you have the option to change under the Canadian system. But it's hard work. So proud of you for giving it a go.

Sue- I don't mind you asking. I just cannot bear the idea of more surgery, so I did cancel, for the second time, the PS consult. I have gotten some relief, swelling and pain-wise, from the LE treatment. Mine was truncal, not in my arm, and since I'm feeling like someday I'll get there now, I don't want to do anything to mess things up.

The bracelet has been through Indy, and Carrie has it now. It's going to Avmom in 2-3 weeks, then coming back down into New York to Arlene (Greenae). After that, it's you, Sue! Then Ksusan, unless it goes to Sharon first. She had expressed a desire to go last and wear it on her person when she came for a visit.

But I will extend Ksusan's offer. Hopefully, she'll log on and see it for herself. Maybe she would want it sooner, but maybe she'd rather still have it later if we can wait for her.

Eileen, do you foresee any problems pushing back the date? At this point, I have no idea if it would be a month or 3 months. Because she will have to rake more time off from work, that may play into it.

So far, the bracelet has been to 10 people, it will be 14 total unless someone else jumps in.

SueH58

I'm also happy to relinquish my visit with the bracelet so it can get sent right to Sharon. I think she needs it more than me.

Jackbirdie

that's nice, Sue. I'll tell her.

Btw, yes the King's Estate is about the same price here. Maybe $1-2 less sometimes. I think very good value. A little richer than Pinot Grigio, but much less oaky and heavy than any Chardonnay. Which I used to drink a lot of. Maybe that's why.... Oh never mind.

Have you ever tried the Murphy-Goode Fumé Blanc? I don't know if they still make it but it was always a favorite, very much in the same taste category as the KE.

Trvler

I hate hearing that Sharon is having a hard time and wish there was anything I (or we) could do to help. I hope she feels that she can come here if she needs to anytime and we don't mind if she complains but I totally understand about not wanting to do it. Love and hugs to you, Sharon. I am sending good thoughts to you.

I am having a hard time planning anything in the future as well. My brain just needs to get through A before I can do B if that makes any sense at all.

Theresa, I figured it was a small company but it's completely lame they said that to you. Insurance rates as a general rule are experience driven, meaning if they have a bad year in claims, the rates go up. My husband works in insurance (not health insurance) So if you work for a large company or are insured through a big provider, your rates didn't go up because YOU had cancer. It's the entire company/plan. A few things have driven rates up over the past few years including Obamacare, because they require coverage for things that didn't use to be required. I heard a big one adding to costs increases was Hep C drugs which cost around $100k per person. I also think requiring insurance companies to pay for reconstruction probably drove rates up a fair bit, although I am glad they do it, obviously.

KBeee

Sharon, ((((HUGS)))). We are here not just to celebrate our good times, but to carry each other through the challenging ones. Please, please vent anytime. That's what friends are for. You'd be amazed at how many of us are up in the middle of the night here for various reasons, so midnight chatting is definitely an option. Take all the time and space you need. You are such an incredible person and your plate is overflowing with shit right now, but hopefully much of that shit will be controlled moving forward so that you can feel better. Thinking of you!

SueH58

We're all thinking of you Sharon, and sending tons of gentle hugs and good wishes that you'll feel better soon!!!!!

Jackbirdie

Tutti says hi

This is mostly for sound effects.....er....audio

ksusan

Aw.

slothabouttown

found

Found this today at whole foods while picking up my third jar of lavender infused coconut oil.

Jackbirdie

I don't see where it says "co-authored by Italychick"!!!

Love that lavender skin food, Sloth. You got me buying that one! I keep regular on hand too. Haven't cooked with it yet. It's a little dear for that. Until I can get to was it Costco? For the big tub of it. That's a weekend trip for me.

Italychick

Costco has big tubs, I saw they now have a two pack. Just got back from three mile beach walk and sitting mindlessly in a chair looking at the ocean. So beautiful

so-she-did

My brain is working much better today! I feel like a dementia patient when I can't even keep the days of the week straight - let alone remember something I just heard or read.

The reason for the get-together was to celebrate all of us getting through this shit so I agree with the idea of postponing until Sharon is able to attend.

Hugs to you, Sharon, and to everyone else who is finding themselves going up and down the rabbit hole.

Italychick

March probably isn't the best time for Lake Arrowhead anyways, too cold still.

On another note, Cheryl and I have been amusing ourselves with diet picture jokes. I'm sitting here in hysteria!

Italychick

q

Jackbirdie

love those, T

shaz101

Thankyou all. You're all so special. I know so many of you are in pain, and I'm so very grateful to everyone on here. I think I'm grieving my old self. No one understands. They just say stupid things! I think they just hope that their 'empathy' will end the conversation.

I think I'm turning the corner and I can see the sun peeking down the hole. I know its just a thought and if I change my thinking everything will look brighter. I just keep telling myself that anyway.

My lymphoedema is the worst it's ever been. I had laser treatment and massage on it on Saturday. I think that has helped a bit. I've made an appointment on November 2 to talk to the BS about a double mastectomy and recon. I've spoken to the nurse practitioner at plastics and see has gone through all of my choices. But reading about all the pain that many on here have and continue to go through with recon has me terrified. I saw the rheumatologist last Thursday and she has taken me off the RA drugs because she wants me to have blood tests and an MRI on my right hand without the drugs masking anything. I don't really like her but I don't want to have to wait longer to see someone else. She said that it was pointless to look at my left hand as it had too many other issues! Grr, thanks for the sympathy lady! Even though I don't think the drugs were doing much I'm worried about my joints getting worse.

And most of all I want to come and visit you all!

I just want my life back!

Oh and my cording is worse. Any suggestions? I stretch and it eases but then just goes back to the way it was.

DavisD

Sharon-I'm so glad you posted and please know you are so loved! I understand not wanting to complain, I stayed away for quite awhile because of that very same reason. I think you are one of the special people that coaxed me back out. I also understand the coexisting diagnosis of RA, but mine is Sjogren's. I see my rheumatologist on Thursday and I am hopeful she may consider trying me on the naltroxene. I'm having a lot of pain and neuropathy and I believe it's related to the autoimmune, not Herceptin/cancer. It's overwhelming but so isolating so please know you can text or email me any time and I will always listen and do my best to understand. We all need someone to listen and truly hear what we're saying:)

Katy-you're such a good friend:) Hugs

DavisD

avmom-I know you're struggling. I started seeing the counselor from Life with Cancer mainly because she was nice and free! I don't think she's who I would go to for really intense therapy but she's perfect for someone unbiased to just listen without fearing I am burdening anyone. Don't give up if it doesn't work for you the first time. I do agree not all therapists are created equal, you need to feel some kind of connection. I hope your Thanksgiving is full of love and warmth keep on keeping on!

I forgot to mention in my previous post, I'm good with postponing our get together until Sharon can attend as well. She's the reason we all met and should certainly be there if she can and wants to!

Amy-I have those dementia days myself and rely heavily on sticky notes!

Theresa-It make me mad and sad they could out you like that and I agree it would be a HIPPA violation. I love the visuals I get from your posts...being close to the ocean sounds so peaceful.

Katy-love tutti effects! her cousins in Virginia say hi..they are currently trying to break in to the dogs nighttime crates, argh!!

Italychick

Diane, fingers crossed you get to try the low dose naltrexone. 3.0-4.5 mg seems to be the recommended dose. So far my son in law has had no ankhlosing spondylitis pain or Crohn's flare up and it has been a week and a half on the naltrexone. He was even able to run around and chase his kids this weekend, and he can sleep! My daughter and I are both holding our breaths waiting for it to not be working, but so far, so good.

Sharon, my heart goes out to you, and I hope they can get things better under control for you. We will wait for you, sister

BBwithBC45

Hi Ladies, checking in. I don't have many complaints today, at least not yet.

I'm going to see my PS in an hour and I will find out if he just wants to wait and see if my body absorbs the hematoma, or if I have to go back to surgery.

Sharon, my heart goes out to you. These boards are the best place to let it all out, whatever bothers and hurts you, and please do not hold back. Like others said, we are all here to hear you out. Nobody understands us as well as others who go through similar issues. As far as surgery goes, not everybody ends up in pain. Unfortunately, there is no way to tell ahead of time. I personally don't have much pain from my surgeries, just discomfort but I'm not convinced I will always have it. I'm hopeful that with time it will get better. I have talked to my former coworker who has gone through mastectomy and reconstruction a few years ago and she is perfectly fine, no pain, no discomfort, full range of motion.

Theresa, thanks for the chuckles. I like especially the one about eating the whole kitchen - I can relate to that one!

Dementia and scattered brain has been my problem too, I read these boards and by the time I'm done I forget most of what I wanted to say and who wrote what. I wonder if it will get better with time.

slothabouttown

Sharon, so glad you checked in here. Thinking about all of you and the various challenges at hand and sending healing wishes. Hope the week treats you well and goodness prevails.