NOLA in September?
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Uh oh. The pretty butt is now a bit waterbed-ish. Phssssst. I hope I can still wear my pants by March 15! No pain but a bit of a pain in the a$$. (c:
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Adey - I just pulled one drain and they told me to watch out for the "waterbed". What will you do? Have it aspirated?
My backside looks like a shark bit me
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At first I liked the "juice" filling in my shark bites! I pulled both my drains at 8 weeks out. I hope not to have them aspirated. I'm hoping that I can handle them until my stage two March 15th. Marga said it will happen and as long as it doesn't cause you pain it is okay to leave them. So, we shall see. (c:
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Jaimieh - Thanks for posting the article - it was great!
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Hi Amy M!!! Nice to see you here!
Betsy, Congratulations! It's like a party in a box! Beads, music, everything! You'll have fun! I won one last year and it was delish! I served it at a party I was having, it was really fun!
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Its arriving next Thursday, so I may need to plan a party!!
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You will love it Betsy!! So pretty, and delicious. It's fun! Enjoy! You deserve it!!
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Hi Ladies,
Have been having a really hard time lately because of my diagnosis and my fear of going through chemo....lots of crying jags. It was a big blow to think it was DCIS and then post op finding out it was IDC with two lymph nodes. I saw the oncologist yesterday. He really didn't have to much to say because my records had not yet been faxed by mistake. He does want me to go through chemo and have a PET scan although I am debating on whether to wait the four weeks until everything is healed to get a more accurate result or to do it right away because I want answers. This is really hard.
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Caitlin,
I am so sorry you are dealing with all the unknowns. My heart breaks for you. I completely understand the let down though. I was diagnosed 10 1/2 years ago. When I first got the path report my doctor was so happy for me because it was DCIS, have a mastectomy and I'm good to go....noooooo. A week later I got the real news. Turned out I ended up being a stage III. I was devastated. I had just gave birth to my second child and I thought my life was over. But....here I am. I will not lie...I had the crying lags nonstop but it did get better for me once I new what I was dealing with.
I wish I could give you a big hug!
Michelle0 -
(((((CaitlinB))))) You will get through this. I too had my stage increased after thinking a bmx would take care of it. BTW I'll be in your neck of the woods when I bring youngest dd to St Norberts to check it out. Take care. Prayers of strength and healing coming at you.
Hi Michelle!
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CaitlenB, I feel for you. I think the waiting is just so tough. Thinking of you and wishing you the best.
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Caitlin, it is a blow. My experience was similar. I asked my onc about not having found the tumor before BMX, despite all the screenings. She said it is all too common. Allow yourself to grieve. This was not in the plan! I preferred my old plan better, too. I didn't know how to prepare myself for chemo. I had to heal from surgery and just took it one day at a time. I still take it one day at a time! You will be OK. One foot in front of the other. Pause when you need to pause.
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Caitlin - so sorry you are feeling low. It is normal, healthy, and sucks all at the same time.
Will the PET scan change the chemo they want to use? Can you have the port placed in the meantime? Was it the Dr. who suggested waiting the 4 weeks for healing for greater accuracy?
Please remember you chose the BMX and by doing that you saved your life. If you had just done the lumpectomy maybe this would not have been found. In between your well-deserved tears of anger & sadness relish the power you have and the gift you gave yourself. I wish you peace to face the next days ahead.
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Well put need2new!
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Hi Ladies,
Thanks for your support. I so needed that!
Need2new, I think they want to make sure that it hasn't spread elsewhere before making a plan. The doctors at NOLA recommended to wait four weeks until I had healed so that the healing does not appear as hot spots on the scan and that I would have the most accurate results. I hope that we can get started soon. I don't want to procrastinate the chemo. but at the same time, I am scared shi%less.
For those of you that had chemo, was it really difficult? Did you work through it?
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Adey,
Your daughter will love St. Norberts--it's a beautiful campus. Well, I think Wisconsin is beautiful but this time of year it's a bit drab. :-)
((((Hugs to all)))
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Michelle,
You are an inspiration to me! 10 1/2 year survivor--that gives me such hope. Thanks for sharing your story and for being so supportive!
(((Hugs)))
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Caitlyn, I had a hard time with one of my chemo drugs. I was very sick for 4 days and then i was fine and went to work the next week. EVERYONE is different. My BBChemo buddy was not sick at all!!!! We are both the same age so that didn't matter. We both had the same drugs too so there you go. My 2nd half of treatment i had a different drug and I had NO side effects at all! Mind you this was 10 years ago so I am sure they have better anti-nausea drugs now:) I hear they even give them to some pregnant women. Wish i would have had that!
I know it is tough. We are all here for you!!
On a side note. My family travels to Door County almost every year since i was a child to vacation. Absolutely love Wisconsin, beautiful state!!! Ok...i am procrastinating...i need to do my taxes!!!
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Hang in there, Caitlin. My mom was on chemo every week for 18 weeks (finished the week of my BMX) and was never nauseus and also never lost all her hair, though it did get thin. She's doing great now and her cancer was fully metastasized. I know this is a blow, though. I think about you every day.
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Caitlin...I had 6 rounds of chemo... Was never once nauseous...and worked full time. I did lose my hair, but bought great wigs... I had one "ill" day each round, so I found it doable... I too found out at full path report my nodes weren't clean... Seems to happen more often than not. I had a lumpectomy in December 2010 and started chemo in January ... Waiting 4-5 weeks post surgery is normal... So plan your scans at the 4 week mark, but see you oncologist and get the plan in place to start chemo and get your port... You can do that now. Big hugs.
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Caitlin - there is your answer. The docs want you to wait for the most accurate reading. Take this time to eat well, rest, and heal.
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Stage 2'ers - questions for you......especially the hipsters (GAP)
1. How long did you stay in NOLA?
2. How long sfter surgery did you go home?
3. How was the plane ride home?
4. DId you have drains, if so, for how long?
5, DId you do a post-op or truly not necessary?
In the midst of scheduling my stage 2 and the Jazz fest is in my way. Any thoughts on stage 2 helpful. My second choice would have me there over mothers day weekend and I was wondering if I had surgery on Thursday would going home Sunday be too early and just blow-off the post-op as it seemed not a mandatory thing.
Someone else's turn to tell me what to do :0
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1. I flew in Sunday, surgery Monday and flew out Friday, but could have left Thursday
2. So could have gone home three days later... flew out 4 days later due to flight prices.
3. Plane was fine
4. Had drains.. went home with two drains at hip, lost those the following Monday
5. Had a post op with Laura Thurs am... there was no way to schedule one with Dr D, and I like to have post ops.
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So... had my visit today with my MO... had my list of concerns... he seems to blow off some of my questions... I was complaining of possible side effects from Tamoxifen (dry skin, vision issues, shoulder pain) and he dismissed most of it. Actually I was concerned the shoulder pain was node related, but he said no... Then he complimented my girls, but just has a wall up about the whole NOLA thing... He said today that locally he has seen great recon.. I said, yes, with implants, and he said and TRAM.. I felt like I was beating my head against a wall... I feel like he would never recommend it to anyone because he believes TRAM and implants are sufficient options. Very narrow minded ... makes me question my trust in him.
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Thanks, ladies! You all ROCK!!!
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Caitlin - I'm sorry that you're dealing with the shock of having invasive BC with nodes. It seems from your signature that your BC falls squrely into Stage 2. Many women at that stage have no screening scans. I agree others, you should use this time to heal and come up with a plan. I would call the Center and ask them to send you copies of your operative and pathology reports. They can scan them and email them to you. If you should want to get a 2nd opinion or consult with a RO, you'll have everything you need The planning, waiting stage is definitely the hardest time! My crying jags were making doing normal things difficult, I called my regular doc and got through that time with help from xanax! .
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CaitlinB- I am so sorry you are dealing with all of this. I agree that waiting is the hardest time. You should use this time to rest and heal and come up with a plan. To deal with the stress and get support- many women put a therapist in place, antianxiety meds, mindfulness techniques.... are some of the things that can help.
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Caitlin... It is best to start chemo before 6 week post surgery... so I would plan your port insertion (ordered from the MO (oncologist)) and meet with the oncologist... you can plan for chemo, pick a start date etc, and then have your scans... All the scans will do is perhaps help figure out which drugs are best and for how long, but won't change whether you need it or not.. believe or not, having that plan in place is comforting. I had surgery Dec 8, 2010 and met with the oncologist Dec 27.. then had my port put in Jan 6 and started chemo Jan 18. I was glad I was doing something... and yet resting and healing at the same time.
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Thank you, ladies. That is all great advice I am meeting with the oncologist next week and I am sure we will form a plan. Not looking forward to "the port." Normally is it inserted below the collarbone? That's the impression that I've gotten from the threads here, but some are in the neck??? I wouldn't want that to be exposed to the world. It seems that it will be difficult enough to go through, lose your hair, etc. I feel like people will stare etc. not looking forward to people feeling sorry for me.
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Caitlin, I felt like I was punched in the stomach when I was diagnosed. Mine was invisible to mammogram and ultrasound, so it was enormous and at first I thought I was doomed. It ended up not being anywhere else, even my nodes, even though it was so big. But my ONC was all doom and gloom essentially because it was so large. Scared to death! What you are feeling and the crying jaggs, totally normal! You've been given some bad news and you just need time to get used to it. I can tell you for me, after about 3 months, the "shock" of it wore off some. You won't always feel this way. I also did take an anti-depressent for a few months becaue the crying jaggs were totally getting to me and I was like, ENOUGH already!!! That helped. Then it passed and I stopped taking them.
I had 8 treatments of chemo and then followed by RADs. I worked through the whole thing, (and I have a demanding job, got good appraisals too!) never got really sick, and exercised too. Actually, my ONC "prescribed" me to go to Physical Therapy and they assigned me 45 minutes of walking a day, and other strengthening exercises, all throughout my treatment!! I think this helps. I read recently that women who exercise during chemo are ~50% less likely to get a recurrence. Nobody told me that at the time, I am not even sure it was known then.
There are also Chemo boards here on BC.org. I suggest you hook up with one when you determine when you're starting chemo. You all go through together, and like this board, then you are not alone. I am still in touch with 9 other women from the "Chemo in Sept 2008" group!!
If you don't feel sorry for yourself, others won't either. And if they do, don't pay any attention! The hair thing stinks, I wore a wig and nobody could tell. (My husband said the Wig looked better than my real hair! ha!)
The port thing was a shocker for me, that's when it hit me the chemo was for real, so I think I can relate to how you feel about that! It is like on your upper breast and I think they somehow thread it under your skin into a major vein in the neck. My advice? Don't think about the details too much. Just put your head down and get through it.
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