Calling all TNs
Comments
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I forgot to post my best thing today. After diagnosis I've pretty much tried to cut out as much sugar and fat as I can and since chemo was cancelled hubby treated me to a pumpkin spice latte from Starbucks. It was nice to just hang out and be normal for a bit
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All this cappucino and latte talk...I can't take it, I'm leaving to get one now.
Mccrimmon: I'm sorry about your last treatment, it must be hard to be so close and hear wait. I know it will still get here but thank goodness for sweet husbands!
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Suze-I love your attitude.
LJ- what can I say, you rock!
Please don't stop posting sending much love you guys way.
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first chemo done yesteday...see sept chemo thread for grueling story with red tape and insurance. Doing dd Taxol every 2 weeks then dd Ac every 2 weeks each 4x. So far so good just some heartburn tonight and a slight headache. No nausea and had Neulasta today after I took my claritin and some aleve. Took a zofran at 1:30 today as I was not sure if I was feeling a twinge of nausea and did not want to take that chance. So happy 1 down and 7 to go...gonna hang out at home all weekend and take it easy and just walk a bit each day.
Maggie
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Way to go Maggie! Rest, drink lots of water, walk a bit - you're doing all the right stuff.
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oh and forgot to post this....all my blood work came back excellent...cancer tumor cell negative...brca negative...and another one where my number was 17 and up to 38 normal range but was so happy about the other 2 test results i was not listening intently as to what that test was. My daughter was with me and I almost was crying about the BRCA thing!! happy dances all around.
Maggie
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So glad to here things went well Maggie, I have been wondering how things went. Sounds like a good idea to keep on top of your nausea. Glad you're ok, Hugs and so glad you are well.
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I have been reading everyone's posts and I am thinking of all of you! If I responded to each one I am afraid I may miss someone with my chemo brain! Although. I have to comment Suze, I always get crazy pains as soon as I make an appointment for a scan, and if I find everything is ok they go away, so I can certainly understand when they show something that the pain would start up! I get my scan results tomorrow, I am a bit more calm about it today than I was yesterday. Trying to stay in the present, as I keep reminding myself that worrying now will not change what I find out. Why is it so easy to say, but so hard to follow?
Hugs to all!
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Yay Maggie on your first chemo, and double yay on your good test results! I think the 17 was your tumor markers, below 38 is normal, which means your tumor load is likely normal. Great thing! I'm also glad to see your doctor ahead of the curve, giving you Taxol first. Hope the nausea stays away. Be sure to take your Senna with that Zofran! It can really stop you up.
Bak - I'll be thinking of you tomorrow. This ride is a roller coaster, only we never seem to get off of it
. I think you are going to have great results tomorrow though, you've had such a great response so far. Please let us know when you hear! Good or bad, we are here for you.0 -
ARGHHHH. My ribs hurt!! I think I need to go in for an x-ray tomorrow. Does anyone know what costrochondritis (sp) feels like? This is definitely rib, it is pretty specific, and not diffuse. Off to take a Vicodin. Ugh.
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Hey Ladies, I'm reading your posts, and sending you all love. Suze and LauraJane, and Jenn, you are in my heart and thoughts every day. I'm so glad you are both getting aggressive treatment and I hope it kicks ass, in a good, good way.
One thing we learn from all of this, is the fragility of life, and how quickly it changes. We must hold fast to all we love, and appreciate all we can. The leaves here are beginning to change color, and fall is in the air.
Susan
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I don't think I've done the best thing that happened to me today....I need to do that..
You guys don't realize how each and everyone of you is so damn important to me...I want you to know that I feel everyone's pain and their happiness too..I laugh at Heidi's jokes..(who wouldn't)..I'm just not that good at expressing myself
I started this thread a couple years ago because I was feeling so alone..and I wanted to talk to people that knew what I was going through and I knew what they were going through...
The best thing that happened to me is that I found my DD's fiance's wedding ring...I had kinda stashed it somewhere and forgot where I put it...oh yeah..chemo brain..can I use that excuse now??
Suze and LJ..your new treatments better damn well kick some ass...or else...it's TIME that these drugs do something for we tn's...we have waited long enough....I hate cancer.
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Hi everyone, i don't seem to be able to catch up with all the posts
Suze - All the best wishes in the world
mccrimmon, you will get through this.
Titan, i'm glad you started this thread, i am a bit isolated where i live and you are all friends now
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Think I may be jumping over to Google+. Anyone else getting tired of Facebook changes?
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Suze, I had costrochondritis once from an injury (fall when mountain biking.) The pain was sharp and severe and I could not do crunches or abdominal exercises without a lot of pain. I still have very minor dull rib pain and some places that are sore when I press on them (following chemo) but have a CT scan and bone scan scheduled now for Oct. 4- the CT has to be done prior to a study anyway but I am moving it up so I will know about the ribs, too.
Heidi, I haven't checked out Google+ but I am always tired of facebook changes! I haven't been on facebook much the past month since I've been working so much; I'll have to check it out.
Titan, I'm so glad you started this thread. I joined when I was originally diagnosed triple neg, but then they found a little bit of ER receptors following my surgery so I'm no longer clinically trip neg but I sure hope it is ok to stay here as I've gotten to know and like all of you on here!
Bernie, glad you are on here and I always enjoy pictures of your animals! I would love to have a small (non-working) farm someday.
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Off Topic- getting the kids a kitty cat tomorrow. I think I am more excited than the kids are.
Titan I am thankful for this place as well. I don't have time to actually attend support groups. So this works out just fine for me.
Today is my alt. work day and I am baking and decorating cupcakes for the kids.
and yes I am going to eat three not all at once but I am going to eat them. lololHeidi- Occasional FB user. I just lurk and very rarely post.
Christina1961 I just hope to have a small organic garden soon. Hubby won't go and get the loaner tools from home dept for me to start. I may just switch to a small pot garden.
IT'S THE WEEKEND LADIES MY FAVORITE TIME OF THE WEEK!!!!!!!!!!!!!!!!!!
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Yesterday, out of boredom and lack of purpose, I decided to clean windows and wash curtains. I NEVER do that. Man, I miss my kids living at home and the constant variety and purpose they provided. Some days, I just feel like I am taking up space, and my house is so dark and dreary (all those tress I planted when we moved here 24 years ago) have gotten tall and shady. Even cleaning the d*mn windows hasn't let more light in
Guess I'm going to have to live on the porch all winter... it's nothing BUT windows. Isn't it too early for SAD? Went through it last winter and was hoping to avoid it this one.
On the plus side, I just bought my other son a beautiful solid mahogany bedroom set at this fantastic used furniture & antique store in town. Last month I'd gotten my other son a lovely maple one and myself a cherry set for the second guestroom (boy's old room). But I can't spend my days shopping. As much as I wish I could, even a day at the mall no longer holds any appeal to me.
Am I getting old (57) or do some of you guys feel the same way? Seems like I just don't have as much interest in doing things on a daily basis as I used to...content to sit home and read, watch TV and goof around on the computer.
Then... I go into high gear and drive/ride my horses or sail...it's like feast or famine around here. NO consistency!
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Fighter: Kittens are so much fun!
Heidi: I need lots of light in a home to keep me happy-First thing that I am going to do is get rid of all of the dark paint the former owner of the house we purchased used-Hoping we have enough money to open up the front of the house and enclose the porch to allow more sun in. Thank goodness the kitchen is nice and sunny all day. I have a feeling I will be spending a lot of time there. I have the same problem-my level of interest in things has changed. Not sure if it was the chemo or what. I know that my body temp now runs very low and this really effects how the brain works. When I am at 98.6 F I am still a firecracker-anything less and I feel brain challenged. This especially happens while in a crowd or around lots of noise. It's one ofthe main reasons we are moving besides housing costs here-more peace and quiet so I can hear myself think. I will be adding lots and lots of lights to our new place to ward of SADS.
Re: Facebook: I just don't spend much time on there anymore. Most of my on line time is here with all of you. It's what I do after checking my email and it's all I have time for anymore.
Mags: Congratulations on getting through your first chemo. Take the anti-nausea drug-my first dose I forgot to take them and I was horribly sick. Hang in there!
Hugs to everyone and hoping you all have a great weekend!!!
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Titan - this thread has truly given me so much, I am not good with support groups, and it has been wonderful to post when needed, and pull back when not, without censure. The information has allowed me to be prepared, but hopeful, and now, gives me determination to keep going. Thank you.
Christina - that sounds like what I'm feeling, sharp pain, tender rib(s), hurts to move, and when I take deep breaths. I'm sure it isn't my liver, so I bet it is something along the lines of costrochronditis. I hope it eases soon, ugh.
Bernie - I'm glad you have found us. I love your animals too!
Fighter - oh, a little kitty. Pictures! I'm making cupcakes today too! I say there will be a dozen, but that's really what will be LEFT lol.
Heidi - I'm a bit younger, but so understand the lack of purpose. I was struggling with it terribly prior to being diagnosed. My kids were in school for the most part, and I never had any motivation. I don't have any advice, just empathy.
Good thong for the day (ok, I was going to edit this typo, but thought we could all use a good laugh!) - me and my family are going to my BFFs house for dinner tonight, we are going to do this twice a month, to have a big family meal with kids running around and lots of grown up talk. I can't wait
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Titan: Thank you so much for starting this thread and bringing all of us together. It's so great to have other women to share with while we are going through not only our treatments but life as it is afterwards. Don't know what I would do without all of you!!! Hugs!
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Titan...yes..this has been a trememdous support to me.
So excited going to parents weekend at Bennington this afternoon...have to bring my son 3 pounds of bacon...his request!
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You know, the irony of all this is that I've spent the last 20 years telling kids to turn off lights, etc. and now, I feel like turning all the damn lights on in the house regardless of whether I'm in the room or not.
In fact, that's what I'm going to do. To H*ll with the electric bill! I want to walk around in *light* not shadows. The weird thing is that I really like my house; it's cozy and comfortable but, since my Dx (or the kids moving out) it's just too dark and depressing.
I'm actually thinking about going back on ADs...I have been on them before (@ 6 months after dx) and they have been prescribed prophylactically for my headaches which, I am waking up with every damn morning.
No, I'm not afraid it's a brain tumor; it's just my pattern and the last two occipital nerve blocks have not stopped them. I've tried Ambien (5-6 hours sleep and still wake up with headache), over the counter (gives me dry metallic mouth) and 2 Xanax (works good but hate to do that all the time).
Sorry, small rant...so minor compared to what many are dealing with in here. More guilt.
OK, I just knocked myself upside the head--- get over it Heidi!
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(((Heidi))) I'm with you-keep all the d*&% lights on!!
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Suze- I have already eaten TWO. Oh I can't help myself some pls call in the rescue team. There won't be any cupcakes by the time the kids get home.
Heidi-my mom went through the same thing. She had to find a purpose something to look forward to. Once the grandkids come along you will wish for this time. I know my MOM sees my number on the phone when I am calling her (I think she is dodging ME). I don't want anything I swear although my cell phone is on it's last leg.
MBJ- I agree light is the key. I made sure extra windows were purchased when we were under construction and it made all the difference. We are getting so much rain on the east coast that it is making it so depressing.
I thought it was only ME MBJ. I too feel out of whack in loud places or like my brain isn't connecting. I didn't know how to express what I was feeling. You are so helpful. Please keep posting b'cuz you can relate what others can't express. I didn't know which Dr to ask either the PS, BS, Family Dr, ONC or the much needed shrink (according to my DH). Too many Dr.'s right???? LOLOL
Okay ladies I have ramble enough. Let me pop in the yoga DVD and make it happen.
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Heidi:
Stop beating yourself up for what are normal feelings (especially for us). Just feel what you've got to feel, but make sure you get those horses out and ride all of it out of you, babe. Also, atmospheric pressures change as well with the seasonal changes, could be triggering the headaches a bit as well, I know it does all screwy things with my bone/joint aches and my damn sinuses.
And once MBJ moves to KY and gets settled in, since so many of us are just a state or two away from each other, I say we then begin to plan a big meet up in KY to all finally get together - that would be so cool!
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Titan, just a thank you for starting this thread, I know I'm new here but I do use this thread as my support group and would be completely lost without it.
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Maggie- One down. I'm sure as with many of the others this is going to work for you. You seem to have a great attitude and you will get through all of this and I hope its with very few SE's.
It looks like another chemo bites the dust. (Abraxane/ Avastin) Skin mets flaring and tumors popping up, edemas back. man, I was really hoping this duo would work at least for a while. Onc wants to see me back on Tuesday. I'm not sure what her plan will be. I told her last Tuesday about the new tumors but she thought if she tried the Avastin weekly it would calm down. I can't believe how much worse it is in two days. She has me on time release Morphine for now and more for breakthrough pain. I'm so happy I had a good week a couple of weeks ago. It was so wonderful to see the mets going down so fast and the pain was so much less, I am so glad I went to New York when I did. She also wants me to start Lyrica for the neuropathy but if I'm swithching to another chemo I don't really see the point. The cancer pain makes my feet not seem to hurt as bad. LOL She also said it may help with the pain in my arm. Tumors are pressing on nerves so the top and internal side of my arm aches but the underside is numb (Kind of like when your foot falls asleep) Weird. I'll look forward to sharing some good news with everyone soon. I'm just hoping it is in the same areas and hasn't moved to any organs. Ha! I forgot to ask her about the flu shot! I'll try and remember on Tuesday.
The best thing that happened to me so far today is that I went for a walk with my dog Charlie. The weather is beautiful here. Cool and sunny. The leaves are starting to change it's truly beautiful outside. I hope all of you are having a good day.
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Sorry all- I was so self absorbed I missed a whole page of posts
Mags- hooray on your BRCA negative. It has to be a huge weight off of your shoulders
Bak- You are sooo right at how easy it is for me to waste precious time worrying. I'm truly hoping with all that I have that your scans come back with great news.
Suze- I am hoping your chemo duo works for you. I''m also sure that they can give you a stronger pain pill. I hope you have a great dinner tonight
Fighter- I am happy for you on getting your new cat. I just love cats especially the ones that like to hop in my lap and cuddle.
Heidi- you sure had me fooled how nice to know your normal LOL. I'm not making light of what you are feeling but it is so nice to hear you post something so personal. I think I know how you feel about the light thing I also turn my music up real loud sometimes with the tv on. For a while I thought maybe I was turning bi-polar since DX. I sometimes feel like I going crazy trying to fit as much into my day as possible and other days I'm glad to just do the dishes. I hope your mood changes and you feel better. Have you thought of starting a new hobbies that might evoke a new passion?
LRM- I love the idea of us all having a chance to meet. I loved Heidi's idea of Washington DC last year but my rads interrupted that.
By the way I'm dreaming of cupcakes, now. Chocolate, vanilla and coconut. Yum!!!
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Christina- I am almost 9 months PFC and have tender spots on my ribs- no real pain unless I push on the spots. I see my onc next week. What's the best scan to ask for?
Has anyone had vision issues since chemo? I feel like my eyes are heavy all the time. I saw an optometrist and he says my vision is about the same as it was 2 years ago. Just a little worse with my near vision. He has me seeing a neurologic opthamologist next week.
Today is my 11th wedding anniversary!! Too bad my son and husband are going on a Boy Scout campout tonight. I guess no "romance" for me tonight! !LOL!!
Laurajane- you absolutely amaze me! With all the crap you're dealing with, you still are able to find a good moment everyday! You are an inspiration to us all!
Have a wonderful weekend ladies!!
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LJ-I too waste too much time worrying, but it is so hard not to worry! Had moments of calmness last night, but then broke down with anxiety and took 2 mg, yep that is right 2mg of ativan and a benedryl to sleep last night! I had the best sleep that I have had in a long time! ANd I felt good when I woke up, not hungover! Still, that is way to much to take on a regular basis!
Christina, what was your final er finding? Haven't had my final path yet as haven't had surgery but my biopsy reads minimally positive-3%.
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