NOLA in September?
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Caitlin,I am sorry you are having to ask these questions,but I wish I had known of this forum when I was diagnosed.So much good info.I had my port placed the day of my first chemo because the hospital was about two hours from us and my doctors wanted me to start as soon as possible with chemo.My port was on my upper chest,not noticable unless wearing low cut tops.I hated my port,but loved not having my veins poked..though they had to do my weekly blood draws in my arm.I had herceptin so doubt my veins would have held up with weekly treatment.I started my chemo in October, while I was bald,it was wintery,so I wore cute hats and don't think anyone really noticed.And it seems hats are in now so people will just think you are cool and with it!!!
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Hi Caitlin--I too am very sorry you are going through this...do you know what type of chemo you will be getting? Each one has different side effects. I had 6 months of chemo, then radiation every day for 2 months. I'm not going to lie, it sucks...but in the end, it saved my life so I cannot complain too much.
The main thing I want to express is that while the side effects may be hard, that you will still have some amazing and great times during the year (for example I took a great trip to Italy!) I also had the "energy" to fly cross-country every 2 months so I could see my dad. Also, I worked 3 out of every four weeks, which normallized my life. You don't stop living due to cancer...it just alters your world for a bit.
In terms of side effects, I would be a little nausous the first day or two after chemo, and I recall being a little manic for a evening once a cycle when they gave me prednesone (since it's a steriod...but they warn you of the side effects.) Mostly, I was just more tired...but I recall throwing myself a big 30th birthday party and going out all night with friends so it couldn't have all been bad!!!
I chose to not get a port, and had them "stick" me in the non-lumpectomy arm each time. My veins are really tough to take blood from now, but I just didn't want the port. It was just a personal choice. I hear it makes life easier though.
All my best,
D
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Thanks, ladies.
I can't believe how strong you ladies are! It's an inspiration to me. Thank you for making me see that chemo will not be so bad. I didn't know that I didn't have to have a port. I do have small veins though so it probably would be best for me. They had a heck of a time sticking me for my two surgeries at NOLA. :-)
Wow, DJ it's awesome that you were able to go to Italy--that is my dream vacation.
As Springtime mentioned, I just need to put my head down and get through it and not worry about all the details.
I am also seeing that I need to live my life one day at a time. I know it will not be easy, but it really helps to have the support of incredible women on this forum. As much as my mom and husband try to understand what I am going through, it's not happening to them. It's helpful to see so many women that have and are on the other side.
God bless,
Caitlin
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Caitlin... I should add that I went on vacation too between my 3rd and 4th chemo... We went to St John for 10 days... I was able to snorkle, swim etc... and felt 100% normal... except that I had no hair and wore a wig or scarf... not a big deal.
Also, it may not be YOUR choice about a port... They will evaluate your veins and may tell you that they can't safely use a needle each time... If you have bad veins, and the chemo leaks, it can be painful... like a burn. The port was a drag the first couple of days, but I got used to it and forgot I even had it... I then had trouble getting it out as my tissue grew around it, but all good now.
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Thank you, Betsy! I will see what they say. I am not looking forward to it, but it may be necessary because of my crappy veins. I can see the advantage of having one. I really don't like being stuck multiple times. I was told I have "rolly little veins" in NOLA, lol!
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Caitlin - I had chemo in the late 80's before ports were available. My veins are trashed and I so wish I had a port. They are realatively easy to insert, most breast surgeons do them. It is an outpatient visit. So many ports now are low profile and you can hardly see them.
I still have major anxiety over getting an IV 24 years later. Go ahead, cut me up but when you start an IV I cry
Good luck.
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Ashley has told me that attending surgeons will be Dr. Sullivan and Dr Legarde at Fairway on August 17. Dr. Massey is my PS . We have flight out in the 14th and will stay at Hotel Montelone for 2 days. We have never been to NO so we will enjoy a couple of days.From there we will rent a car and do pre op and drive to a hotel near Fairway the night before. My hubby is still working on a place for him to sleep for the next 4 nights. On release from Fairway we have 4 nights at the Homewood and hope to fly out on the 25th. Thanks to everyone for help with finding these amazing doctors and places to stay. I am offcially having a "stacked Diep".
I have had 2 c-sections and Dr. Marga was not concerned about that at all. I saw this as a concern in another post.
My surgery is 6 mo out so I have lots of time to read your posts and ask questions. I am not crying anymore and just want to get this next year past me.
I will be retired as of July 1st and will start asking more questions.
Passing good thoughts to all that need them. I think about the people on this site every day.
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Hi Caitlin, I went back and forth about a port and decided having one inserted was the best choice for me. I had another friend who did not and has bad veins in both arms now. It really wasn't bad getting it or having it removed (that was a happy day). I wish you the best. I think everyone is right....once you have a plan things become a little easier.
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Hi Caitlin: So happy so many people have encouraging words for you. I had chemo 4 years ago and chose not to have a port. In retrospect, I wish I had the port. Perhaps thinking along the same lines as you, I didn't want people to see the port and I didn't want to have something in me the entire time because it would remind me of the cancer I have.
My veins are very small and I had an excellent chemo nurse but....... she went on vacation for a week and I had someone else. That person could not find my vein, I got sticked several times and finally went home after a strike 3. I came back the next day and she was able to stick me after 2 tries. Not fun.
I think you can do most things during chemo. Similar to DJ, I was nausous the first two days. There is medication that was given to me intravenously while taking the chemo to lessen the side effects. As each day passes, you feel better. Once you start feeling really good, it's time for another dose. I exercised every day on my treadmill. I borrowed a treadmill from a friend and felt comfortable exercising without a wig, hat, etc. It was a great way to workout without the hassles of everything else. I would keep running even if I was sick; kind of a trooper. Just watch you heart rate because mine seemed to go up a lot higher than when I wasn't on chemo.
We are here to support you. Lots of hugggsss!!
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Caitlin -- My daughter had triple neg and they did neo-adjuvant chemo for her ... 8 weeks. She had a port put in, and I think she was very happy she had done so. The thought of it produces anxierty, but once in, she adjusted to the treatments well ... wishing you all the best ... hang in there. YOU are one of the STRONG women you laud on this board. We are all warriors in this fight and it is SO good to know there are all these ladies (and the Center) that have your Back!
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Caitlin... My hubby has to put in IVs all the time. He would recommend you get a port. It is not just the frequency in which you have to have needle sticks, it is also the drugs that are going into those veins. Chemo drugs are very hard on your blood vessels. And you are not just getting stuck for infusions - they will also be doing blood draws to make sure that your red and white blood cell counts are within normal limits so that you can safely have chemo and to know when they might need to add Procrit and/or Neulasta/neupogen shots to maintain or increase your counts. Having the port makes things a little easier and it is nice to try and keep your other vessels intact in case of an emergency. Just my 2 cents...
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This article about about Vinnie Myers just appeared in the first section of the Washington Post (someone posted it elsewhere on the boards) The article also mentions Dr. Massey and NOLA.
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Has anyone heard from Eva? Miss her posts.
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Downey, Eva sounds really good in her Facebook updates! today she said she feels like she's turning a corner....
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Downey, I'm in Raleigh! So close...
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Uh-oh ... insurance issues. So bummed I can't stand it. Means, I think, that 2b is out of the question. Trying to trust that Vicki and the gang can out arm wrestle the insurance company. If I am liable for that which they won't pay, we will be, simply, bankrupt. There goes the B&B and the future ... and we are midway through the renovations on a HUGE bank loan for the business. Sigh ... can't it EVER be easy? Depressed quite a bit lately ... must be a delayed reaction from the last surgery because when I got home from that, I had one weekend and back to work! My contralateral breast has shrunk so that it is so much smaller than the reconstructed one. And now this insurance appeal mess ... I needed this like a hole in the head. Should count my blessings, I know, but today my counting skills seem to have abandoned me. :-( Need an Eva limerick!
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I am just assuming my insurance will pay for 2b.. I thought that had to get you to symmetry and no issues. I still have a firm area on left breast and it flattens outin that location.. so my plan is for dealing with the firm area and fat grafting to fill it out. Better be covered.
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Not that much to report. I'm sleeping well and starting the days feeling pretty good, though I pumpkin out around 5 pm. I'm having more breast pain than I expected. I'm still taking the pain pills every four hours around the clock, which is disappointing. But I don't think anything is wrong.
I still have that really hard lump at the top of my left breast. Do I just let it be? Should I massage it or anything? I'll be three weeks out Wednesday.
With regard to the 2b, is that not included in the original fee? I had the impression that the original fee included stage 1 and 2. Or at least all but a nominal fee?
Thanks and sorry for the lack of a limerick. It's late.
Thanks!
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Eva - Mine felt "hard" too but have softened. The nurse said if it is hard like necrosis it is really hard. I am at 5 1/2 weeks and change everyday.
I didn't think stage 2 was included but a separate fee. My insurance has paid the anesthesia but the other fees are stil outstanding. I am sure they will wait until the last day to pay.
Today I had to pull my 2nd drain as it worked it's way out so far that it stopped sucking. Kind of a blessing in disguise as I have to go back to work next week. Could use a few more bi=ut what do you do :0
For Eva & Celtic
Celtic Antique had a problem with insurance
They did not know it was a regular occurance
She needs her B & B
Not a hefty insurance fee
Nor a hole, an appeal but a dance!
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Eva - leave the hardened area alone for now. Three weeks is really, really early on - I personally would not do anything regarding the firmness at least until after the six week mark. And then I would be looking for that answer from the Center. I would not massage it - you are on activity and sleeping position precautions for six weeks - so they really don't want a lot of jiggly, positional squishy kind of stuff going on! Hang in there! I had a large area of necrosis and by my stage 2, which was 6 months later, it was nearly all resolved. A stage 2b is generally not included in the preauthorization from the insurance company as it is a separate surgery. The out of pocket costs are a separate thing which the patient works out with the center.
Celtic - my insurance also denied a stage 2B - I did not have good luck fighting them, but I may try again this year. Maybe take pictures? How about a second opinion that states the differences inthe two breasts and the need for revisions? Do you have a local PS that wold be willing to write a letter regarding the size difference? Maybe if they hear it from more than one ps that would help? Good luck. I know exactly how you feel... But if you have it in you, don't go down without a fight.0 -
Celtic, I'm so sorry that you're having to deal with the insurance battle especially since you are almost done. I had finally decided to do reconstruction w/ Dr. Massey-even changed insurance elections through my work after they told me they were the PPO I needed and the Center and Dr. M. were covered, Fairway too. When the office tried to set my surgical date Cigna said the Center and Fairway were out of network and would not pay. We have appealed and fought but to no avail. I'm going to consult w/ an attorney but I don't think it will matter. I had a total depressive meltdown when I found out surgery was denied. It was much more of a shock then when I was diagnosed! Hang in there and FIGHT!!! Please do not give up! Life is sure a roller coaster of emotions!
Big Hugs! katiejane
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Kathy. I am sorry this has still not worked for you. You go girl. Contact that attorney. I would call your local news station too and see if you can get someone to do a piece on them. They usually don't like the negative publicity. Write your state insurance commisioner. That list we were making is downstairs, but I will send it to you tomorrow. Hang in there. A million hugs.
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Eva... Stage II for me was a totally separate charge, separate hospital, doctor fees, anesthesia etc... but was approved by my insurance (except the lipo). I feel my stage IIb should also be covered as I have a firm spot that I have had since stage I in July, and stage II did not resolve it.. it seems better, less firm, but it is flat over the hard area... so as far as symmetry goes I don't have it to the extent that I should. AND I have been photographing it for the Center... I feel the more pictures they have for insurance, the better. I don't intend on doing anything about it until 2013 so I can get into a new insurance year... but will consult with Dr D in the fall.
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My insurance has denied me too..sounds like they are all in this together!!! Mine denied a request for simultaneous bilateral SGAP....the denial letter said I could get "breast reconstruction" from an in network provider and what I was reqesting was not materially different than what was offered in network.When I called,the insurance company told me that since there are in network doctors who do SGAP,I could have two separate operations.One person told me I had to travel any distance to an in network doctor,the next day another person told me if there was not a specialist within 60 miles,I could get out of network coverage.katiejane,it concerns me to hear of changing insurance only to be denied,my plan was to put off recon until we could change to a PPO.Do you have the option of an external appeal? I am so pissed that women are put through this,we simply do not need this added stress....
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Thanks, all, for your thoughts and commiseration. Of course, I will still fight. The lipo seems to be the issue and it is the doctor's job to argue that he needed to do that for fat grafting. I was told upfront what my costs would be and I trusted that. Going to try to keep trusting for the time being. And pandazankar, you are so right about the added stress ... but the insurance companies don't care. They are in this to see who blinks first. Took me nearly 3 YEARS to get settled with insurance and Cleveland Clinic when I had open heart surgery -- and that WAS life-saving and totally necessary. Gonna try to keep the faith and, as my mother would have said, put one foot in front of the other and keep moving forward.
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Hi Ladies,
Well, I have have two holes in my right breast. One is rather large; about an inch in diameter. I keep sending pics and the ladies at TBC don't seem to be too concerned. I hate putting betadine on them because they hurt so much, but I do it anyway. 3X per day. I didn't realize a hole was possible, but I guess there's lots of stress on them (I am doing good and not lifting the 10 lbs or more) so I am not sure how they have gotten so big. My boob looks like a horror show. It's really gross. Probably more info than you wanted, but I was wondering if anyone else had this experience??
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Good heavens, Caitlin. Holes? Where? In the incisions? How big are they? I'm sure I'd find it distressing too.
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Caitlin - I had blisters that popped and some holey looking things too. The skin on your breasts is under great stress from all the "stuffing" they put in. I have never had stretch marks in my life (kids are adopted) and have them under my boobs. I just kept betadining them like thye said and they have healed. I still have scabs close to my nipple area and everytime the glue comes off it looks gross under there. The skin is going to have to heal itself from within.
Are you taking any extra protein? I know your appetite is probably not so hot so that can be a challenge. I have been a smoothie girl for years, fruits, organic yogurt, almond milk & protein powder. Goes down so easy even if I am not hungry. Sometmes I throw in veggies too.
Good luck girl - hang in there, they know their stuff @ TBC. Sorry the betadine hurts so much, rub another area when you do it to confuse your pain pathways.
I emailed Jane123's husband to see how she is doing and will hopefully hear back.
Springtime - put me down for Stage 2, May 9th, Dr, Sullivan. Made my plane & hotel reservations today. Had to go out 2 weeks as the Jazz festival made all the hotels have crazy prices.
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Caitlin, I think some others here has some skin issues. I am sure they will chime in. Hang in there. Keep sending pictures. They will fly you back there and fix it if it gets worrisome to them. And they'll pay for all that. Some people get it fixe at stage 2.
Good luck Tamara!!
Feb. 28 - Jane 123 (Tamara) - Stage 1 Dr. Gray and Dr. Dellacroce, NOLA.
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Hi Ladies,
Eva, I know, right????
Yes! Need2New, one of the holes was a blister that opened up. I am so glad I am not the only one that experienced this. The other just popped open, but it is small compared to the other one.
Springtime--good to know. I hope it does not get to that point.
I will continue to betadine the heck out of them. I keep trying to remember what TBC ladies said, "They are healing from the inside out." In the meantime, it aint pretty.
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