March 2011 chemo-lounge
Comments
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Hi Stilts
I have not read that - must get round to it, Janus Rock is fictitious (apparently named after ancient Rome's two-faced god of beginnings and endings). There is a lighthouse at the spot where the Indian and Southern Oceans meet south of Perth, I have been there many times as its near to where my mum lives, but no island.
Lamingtons are good traditional Aussie fair: http://www.taste.com.au/recipes/24553/lamingtons
If you were going to really splash out you would do garlic prawns (shrimps) on the Barbie. Or see if you can get some Tasmanian cheese to go with the wine They make wonderful Brie in Tassie and export it to most places.
I have my 6 month checkup in 4 weeks (had to put it off as I am away when I was supposed to have it.) I have to have a bone density test (Arimidex issue) as its 2 years since the last, but mine don't even do any blood work, just prod me around and say - yep you are good.
I have discussed the scan thing on previous occasions and got nowhere. I have decided not to ask now. With a double Mx if it comes back now its elsewhere and I would be a stage 4. Once they find it my life will go to Sh*t, and frankly I am having a ball at the moment and intend to just live life to the full as long as I can. If that's till I am an old lady that would be wonderful, if not then at least I get to have decent quality of life for as long as possible.
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Oh and Anzac biscuits
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I just had my 6month check up too last week. No talk of scans. Just lab work and physical exam. Still staying on tamoxifen even though I am post menopausal because of my bone density issue. I am still on bone building meds. My bone density increased 5% after a year on medication which is good. Sick of the weight gain from tamoxifen and menopause. I just lost 7 lbs but still have a lot to lose. It is so much harder to lose the weight now. Enjoying summer. Lots of gardening and home improvement projects going on. Our exchange student went back to Italy a month ago...miss her a ton! My son turns 8 in a week! Our puppy is going to be two. Time flys! Life is good. Hard to think about how we all felt three years ago after finishing chemo. Glad that is in the rear view mirror! Still think of you all often......hugs!
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hello my March 2011 chemo family. I need a serious drink and some special music in the lounge tonight.
My ONC, who was suddenly taken ill overseas and rushed home while on vacation two weeks ago, passed away today. my oncologist passed away today. My NP friend heard it in their office when an email was sent to provide information to all the docs. He had recent onset fulminant liver failure.
I am just heartbroken and have been tearing up everytime I thought about it today. He will be so missed.
I can't even imagine trying to find a replacement for him. He was such a special guy.
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Oh Fluff...I am so sorry. How sad. I also hated finding a new MO when we moved but I found a great one. I love him. Maybe you will find a good one. I don't know what song to put in the juke box that would help....hugs!
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oh Fluff, so sorry for your sad news. I'm glad you had such a special Onc. What a loss for all of his patients... The song "let it be" comes to mind. I think because it always gives me great comfort. Sending a hug. PS I always think I'll chime in when on my computer (vs my iPhone) but I end up never chiming in. I always love updates from the chemo lounge!
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Hello my chemo sisters,
Fluff, I am so sorry to hear about your Onc., wow what a lose!
It's been a while since I've checked in. The summer has been busy to say the
least. I really need to talk to someone so who better than the ladies who I
depended on so much three years ago.Today I went for my mammogram and was told that I have several tiny cyst in my non-mastectomy
breast. They have scheduled for me to have a "cyst aspiration" next
Tuesday. I am worried out of my mind! The radiologist said there is nothing to
worry about and I believe her, but I am still worried. I was told the majority of
cyst are not cancerous but I’m still worried. Have any of you had to go back
and have a cyst aspiration since bc?0 -
Dee Dee so sorry you have to deal with this. I had a BMX so I have no experience with this. I hope one of the other girls can help you out. Please let us know what happens and the results. Hugs!!
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DeeDee, your concerns are understandable. My advice for you is to stay very busy from now until next Tuesday, doing things that you really want to do. Even do something new, go somewhere new, try something new in the next few days to keep your mind occupied and busy. Treat yourself to some retail therapy or a great restaurant meal or entertaining movie or all of the above and more. Best wishes to you and I hope it all works out.
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deeded, like mdg, I had a bmx. Have they never been there before, like they just suddenly appeared? Do you get your mammo annually, or every 6 months? Not that any of that info qualifies me to offer advice.
I'm sending a all kinds of positive energy your way. Don't you wish they wouldn't tell you anything until they had the appointment all scheduled, so you could just get the info and then have the test, so you didn't have to stress for three days?
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Thank you so much for the support, I have worried myself
into a migraine on set my stress. I had
to go to my doctor today for my headache, it’s just easing up..Fluff I do get my mammogram annually. I did have fiber cystic tumors before the breast
cancer but when I had the mastectomy in the left breast I had my right breast
lifted. I'm hoping these are the same non-cancerous cysts coming back. I tried
to explain that to the radiologist but she said she still want to make sure.
She said the cysts do not look like the micro-calcification I had when first diagnosed in 2011.I have never regretted not getting a double mastectomy until
now. I’m thinking about getting a mastectomy on my right side because I don’t want
have to go this anxiety every time I have a mammogram. if my insurance will
cover it.I will certainly post after I get the results.
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deedee-it sounds like they are taking good care of you, and that the radiologist isn't so worried, but making sure.
Your reasoning for mastectomy is exactly why I did the bmx. I could not face the worry from mammograms, etc. I'm the one constantly begging for followup tests. I'm thrilled that my PS orders an MRI to check the implants when they have been in for three years. That will be just short of four years for me from my diagnosis. If he could MRI my whole body, I would get it done, lol.
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DeeDee, I understand why you're stressing but it IS very likely not cancer. I try to remember the statistic that 90% of what we worry about never happens so I don't want to worry my life away. (I remind myself of that a lot -lol!) After you get good news about the cysts, you may stop worrying about the other breast so much, but I do believe in the US, you can have the second breast removed at any point (it's not the insurance company's call, though depending in your plan/deductible, etc, it may cost you some money). I also got a BMx because I never wanted the cycle of mammos and waiting, etc. sending a hug. This will be fine. So sorry you're dealing with this scare...
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Dear dear ladies,
I just finished reading all your updates. it has been a very long time since I have been on here. Just got very discouraged because so many of my "class" have died so I have stayed away. I am way past my expected expiration date-who knows why?-and it is hard to read when so many people you have come to know just disappear.
I feel your anxiety and think it would be very hard to deal with. You guys are way beating the odds-that none of you have had a re-occurrence is fantastic. I hope that trend continues for a very long time.
I love hearing about the vacations and weddings and real life stories. And of course the weight gain. I yo-yo back and forth depending on what drug I am on. I figure when food tastes good I will eat what I want because too many times the drugs make things taste like crap. I am at my higher end right now but as long as they make elastic waists I am all good!! I have to cook for my parents most every evening and their tastes run to heavier type stuff. I try to stick fish and salad in there as often as I can but they do love their pasta and fried chicken (who doesn't). Between my job, cancer and my folks it is like having 3 full time jobs. My favorite thing is to be left alone in my garden with no one asking me to do anything for them!!
I am hating the drug I am on right now. it is an old drug so it works by killing everything. It is a weekly tx-which I hate-and it is kicking my butt. I am supposed to be on 3 weeks off one but it is knocking my blood counts so bad I am more 1 on 1 off. That isn't great because I am probably not getting enough to really work. I am still healthy as a horse-just really tired. Anyone trying to do what I am right now would be tired also, so can't completely blame the chemo. I do have a big problem. I am running out of drugs-that doesn't happen all that often for HER2s because they usually die before they run out of choices. What I have left are really old drugs with very little in the way of PFS-progression free survival. At that point we will try to recycle some from earlier years. I have been on 8 different chemo combos-I so remember when we started and we counted off that initial horrible 6 that most of us did. WE were so excited to get to the end. I think I have had a little over 80 tx. My port is acting up and if we can't get it going this week I will probably have to get it replaced. I hope not. Did all of you get yours removed?
I am sorry I stayed away and worried some of you. Just seemed like I needed a break but I am needing to do some research so I will be popping in more frequently.
AND CAN YOU BELIEVE LABOR DAY IS NEXT WEEKEND???? Where did the freaking summer go??
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Lilylady!!! You just made my summer! So great to hear your voice here. We were worried while trying to stay calm. Sounds like you really have your hands full but glad the gardening brings you comfort. I also don't know where the summer's gone... Before we know it, we'll be planting Fall bulbs. I really hope you stay connected here in the chemo lounge. Your presence means the world to us! XOXO
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yes, lily lady, checking in and seeing a post by you has made my day as well! Thrilled to see you again on the boards. I have thought of you often over the past several months and yet I understand the need for a break from this at times. God bless.....hugs and prayers to you.
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Oh my gosh LL. You can't do that again. You must check in once a month just to keep in touch. When I read your comment about no one hear having a recurrence so far, I knocked on all the wood around me. I do think that with all the boards that I am on. It is amazing to me that no one has. It makes me so very happy.
My husband's uncle from California was here this weekend and we had a mini family reunion. He asked how I was and I replied good and then at least I don't know that I'm not. He chuckled and said he understood and that ignorance is bliss, isn't it? (he has had some medical issues). I laughed, but thought if he only knew. lol. Ignorance is not bliss for me. It is highly stressful. I feel better when I know exactly what is going on, good or bad...and I don't like surprise parties either!
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you made my summer too, Lilylady! Sorry treatments have been hard on you.
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I've been away too long but read each and every post. Deedee, will sure be thinking about you Tuesday. I am sending good vibes and calming thoughts your way!
I have a co-worker who had a suspicious mammogram, so sent her for an MRI because of possible calcification's. She is a nervous wreck. Now, instead of MRI, they are telling her to see a breast surgeon. Feel bad for her as we all know that scary "what if" before each and every visit!
Lily, I think of you often. I have my very first grand-baby and her name is Lily. Lily Ruth. My grandmother's name was Lily White (can you imagine?!) and my mother and her mother are named Ruth. She is 3 months old and we will get to babysit her next week for four whole days! I've babysat 3 times during the day but not overnight. Looking forward to it and her!
After last year's temporary retirement, I got rehired at my old school as the K-8 counselor. So glad to be back. The people who made my life miserable are gone and it feels like a cloud has lifted for the entire staff. It's been great to be back in the groove again.
So glad to see so many of you post. We needed each other 3 years ago and we need each other now. My jukebox song lately (as I was in a fight to get my job back) was Tom Petty's "Won't Back Down." It was appropriate then and I think it works for us all!
Well, I won't back down
No I won't back down
You can stand me up at the gates of hell
But I won't back down
No I'll stand my ground
Won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground
And I won't back down
(I won't back down)
Hey baby, there ain't no easy way out
(I won't back down)
Hey I will stand my ground
And I won't back down
Well I know what's right
I got just one life
In a world that keeps on pushin' me around
But I'll stand my ground
And I won't back down
(I won't back down)
Hey baby, there ain't no easy way out
(I won't back down)
Hey I will stand my ground
(I won't back down)
Hey baby, there ain't no easy way out
(I won't back down)
Hey I won't back down
(I won't back down)
Hey, baby, there ain't no easy way out
(I won't back down)
I will stand my ground
And I won't back down
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So good to hear from you Lily!!! We have all been thinking of you and worrying - Happy Dance now that we have heard from you. You are an amazing woman to carry on the way you have. Take some time for yourself in your garden.
Thinking of you for Tuesday DeeDee
Penny
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Lily- So good to hear from you! I'm sorry for your difficulties with this chemo but glad to hear it hasn't dulled your sense of humor
Sneak off to your garden whenever you can.Deedee- Thinking of you and praying/hoping for very good news tomorrow. I am so sorry you have to go through this worry and stress. Please keep us posted!
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Dee Dee - Best wishes for great news tomorrow.
Husker, I love Tom Petty. Great jukebox selection! Makes me think of Elton John's "I'm Still Standing". The refrain is:
Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind
I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah0 -
LILY! So happy you posted!!! I know this all must come with ups and downs and sometimes you do have to separate yourself from all the BC crap. We all need that break from it. I am happy to hear that you are doing OK and are still your feisty self! Love your sense of humor and good spirits! I hope you will continue to marvel your doctors and find new treatments to help. Glad you have been able to spend time in the garden. I do a lot of gardening and I always think of you when I am out there! Wish we were all closer so we could have one BIG group hug!!!! (oh and large cocktail!!!) Miss all of you! Glad so many of you have moved on with your life after BC so well.Summer went by too fast....my son turned 8 and just started 3rd grade last week! I can't believe it! My puppy will be 2 years old in a few weeks. My daughter (exchange student) is back in Italy and starting school in a few weeks. I miss her terribly.......I really do. Makes me sad. I hope to go to Italy and see her next summer for a few weeks. I am busy with getting my business started....I have been too slow since getting BC to really launch but it should happen in the next few weeks. I will post a link to my website once it's up and running. I am staying busy with volunteer work too.....I am VP of the PTO at my son's school this year (what was I thinking saying YES to that????.....I am crazy!!!). Working on a big fall festival for October right now. I am also still working with BC gals doing Cold Caps and talk to them from time to time. I volunteer with the exchange student program here locally and helped with the big welcome picnic yesterday. I feel like life is super busy...but it's all good. I went back to Michigan 2 weeks ago and spent 9 days there visiting family and friends....I am homesick. I miss everyone so much. It has been very hard to meet people, make friends and build a life here. We have been here 3 years this week but it seems like we are still new to the area. We just don't feel like we fit in. Oh well....that is why I am focusing on all the other things going on in my life and staying busy.
What is everyone else up to? I love hearing the exciting updates!!!!
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Husker-GREAT song!!!
Deedee-anxious to hear your update and sending vibes that all is well
What are we up too? We are heading for a wedding! Here are a couple pix from proposal day. My daughter is the blonde, future DIL in the orange, then son, I'm the pudgy one (thank you ESD drugs) and my hubby. It was a blast of a day! The date is October 10, 2015. In less than a month, she found the dress, found the bridesmaid dresses (hopefully) set the date, booked the venue, met with caterers, and has 20 out of 25 centerpieces put together, and booked the photographer. I am close to nailing down the rehearsal dinner and working on the hotel room block. Seriously, we could have pulled it off for this October, and I am bummed that we didn't.
Next up...find a new oncologist. It just makes me so sad that I haven't been able to really focus on what questions I want to ask a potential new person, and what is relevant to me at three years out. I probably lost my shot at a five year Pet scan, lol. At least I will have an mri this fall to check the implants and everything else at the three year mark. PS orders that. But, I am less worried about that than where it is likely to pop up in other places.
MDG-are you a yoga instructor? I seem to remember your business being in fitness. I saw a cool concept the other day about fitness classes that are live streaming and you can join for $15 a month. Thought that was a great idea!
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Hey ladies,
OMGoodness, I am doubley (if that's
a word) excited..Lily is back...It is so good to hear from you! I am sorry you are having an hard time with your treatments I pray it will get better for you.YEAH!!!! No cancer cells were found
in the cyst, in fact it disappeared when it was drained I had another mammogram
immediately following and it was gone. What a relief, that was the longest six
days and Sunday was my one year wedding anniversary and I spent the day
stressing. Like Silia and you ladies said I was probably stressing unnecessarily. When I see my breast surgeon I plan to ask her about me getting a mastectomy on my right side if my insurance will pay for it.Fluff you have a gorgeous family your daughter is simply beautiful.
Husker, congratulations on your new grand baby and I love your grandmother's name "Lily White"
MDG, good luck with getting the business going. I know you did have a great time at home with friends and family.
Thank you ALL for your support!
BIG (((HUGS)))
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stopping by to check on news from DeeDee, so glad I did! So happy to hear your good news, putting Celebrate on the juke box for you.
Congrats to you Husker and Fluff too.
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I echo everything that Kay just said. Great news, Dee! great photos, Fluff. Maria, def let us know your biz link when you have it. Kay, let's try for lunch in Sept or Oct. Hopefully no food poisoning this time!! Hugs to all.
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Congrats DeeDee! So happy....I can only imagine how scared you were...I remember the first time we all went through this....that was horrible. Glad you are OK>Fluff- love the pix! How awesome! Something great to look forward to.
My business is not fitness related though I teach aerobics. I don't teach yoga, but I take class every week. I thought about teaching yoga, but the thought of studying makes me want to vomit! I have had some noticeable cognitive issues since chemo. I have a hard time focusing and remembering things. I think it must be due to chemo. I have no idea what else would make this happen in the past few years. Anyone else feel like this since chemo?? I have read articles on it and when I read them it describes me exactly. Joy.....BC is the gift that keeps on giving! Oh well.....glad I feel ok other than that.
It was scary to find a new MO when we moved. I first went to Northwestern thinking it was an excellent hospital. The MO was not good. He could not be bothered with my "early stage" BC. He wanted more advanced stage patients. I finally went to a closer MO near my house at the suggestion of two people. I LOVE him. Just keep looking until you find someone you connect with. If you don't feel good with them...switch!
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deedee....so happy and relieved for you! Re celebrate your anniversary! Have a glass of wine, or four.
Mdg-you are exactly right. It is hard to develop the questions I want to ask, which include I want someone to care even though there is nothing (knock on wood) to treat. I can't figure out what would push their buttons to do more than give me the cursory bloodwork and see you in six months speech. I feel like I should be happy that I seem to be healthy and only need bloodwork, but it depresses me that I may not have that a personal relationship unless, as you say, there is something more serious to treat.
It is actually forcing me to take a look at my pcp, who is late 50's I think, and wonder if it would be a good time to start establishing new relationships with docs in their early 40's who will be around for a long time.
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Checking in on you, Deedee...GREAT news!!! What a relief. And happy anniversary!
Fluff- You look wonderful. Your smile says it all. Congratulations on the upcoming nuptials.
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