NOLA in September?
Comments
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Betsy, I was wondering about your seroma. Still working on mine with the LE therapist. I'm taped up again for the weekend. I seem to swell for a day and a half after treatment, then it seems the seroma may be diminished. I'm not sure when I'll have another ultrasound to see how it's doing. Maybe another week and a half.
I had no idea I had a seroma; it did not present as a bulge. Well, I guess one could consider a swollen breast a bulge! My breast did not seem extra swollen and it was not misshapen at all. Wearing the surgical bra except for showering kept me from noticing the waterbed effect. But I only saw/see the waterbed when I raise up my arms ie: shampooing my hair. Even then, what I saw was only about 1/5 of the whole seroma, which covers a shallow area the size of my open hand. Most of my seroma is on the underside of my breast. It never felt waterbed-like, maybe because of gravity. I was able to identify how the seroma feels underneath after the first drain. I think another part of the concern of the seroma is that it doesn't drain/reabsorb fast enough; if it doesn't drain/reabsorb it can form scar tissue around it to keep it from draining at all, then it is trapped (a pseudobursa), I think. Experts, correct me if I'm wrong! That process can take a very long time, though.
Don't be scared by the seroma talk. Most won't have one, especially in the breast after stage 2. It just helps to be aware. Apparently most seromas go unnoticed and disappear on their own.
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Thanks again Betsy for the info on the plane seats. We will request bulk head and priority seating. We hope to be doing flights this week or watch prices. We are trying to get a straight flight home to avoid airport changes.
My husband was wondering about places to stay around Fairway? I don't think they really have a place for him to stay that would be very comfortable. We are looking into Homewood Suites for after surgery. It sounds more homey than Hope Lodge. If my surgery is on a Friday, would I be released on Monday or Tuesday for the hotel?
Eva M. it is nice to hear you say that you are feeling great. I follow all of you girls going through this right now and it gives me strength.
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Cherrie.. I was in teh hospital for 5 nights after MX and Hip flaps and I think 4-5 is normal... so surgery Friday means going to the hotel Tues or Wed... my guess though.
Paula.. I am having the seroma drained on Wednesday. My plan is to tape a piece of rolled up gauze over the area for about a week for extra compression, and wear a sports bra. The problem with the bra is that its kind of high, up next to my port scar.
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Caitlin, the hair loss in chemo is one of the most upsetting things. I said that cancer treatment would be a lot easier if you could keep your hair. That said, we all deal with it. You sort of have to find your own way with the hair thing. Lots of women around me were shaving theirs off in anticipation, but that didn't feel right to me, so I just let mine fall out slowly over time. I tried scarves and caps, but my husband said he liked me best in the wig, so I wore that. I put it on every morning after the shower, and I felt more like "me". Wigs are amazingly good now. I had a friend who didn't wear anything, just went bald and stayed that way. Other friends only did scarves. I would suggest staying open to your feelings and doing what is right for you. I felt better knowing I had a wig and scarve and caps, but that's me; I like to be prepared!
You will be okay! You will still be you. You have all the breast tissue out now that could be removed, so you have totally done that part! Good for you!!!
Hugs, Spring...
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Hi Caitlin...I had two positive nodes as well. Do u know what type of chemo they are giving you? I bought a great real hair wig and no one evenknew it was a wig! At home I put on a cap as wigs tend to get uncomfortable. One tip is to also get what they call a "fall"...which is great when it's hot as the wig only starts right above your ears and then u wear a cute bb hat (or fancier hat if you would like!) to cover your head. Any wig shop should have them...I actually got my fall at the wellness/"beauty" store at the local cancer hospital... Just another place to look if you have one near you.
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Hi Springtime... Could you please add my stage two surgery date above? It's April 3rd with Dr. D at SCSH. Thank you!!
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DJ - how did you decide on your stage 2 already? Do you feel you are healed well enough or will be by that time? If you do not mind me asking how old are you? You look so young to be dealing with all this.
My incisions are healing amazing, you cannot almost not see them where the glue has come off. I am 3 1/2 weks out, still have my drains but hopefully one will go this week. It is teetering on 30 ish so here is hoping.
Eva - you and your sister will do fine with the drain and armor
It took a few days to get a rhythym down and while in NOLA I had to sit while doing it. The chair from the kitchen in the Home wood Suites was perfect. I just graduated today to be able to do my girdle up myself. My husband has been helping up to now. I share a story with all of you in hopes it will give you a smile. My legs have been so sore from the girdle that last night I decided I just could not take it anymore. So I decided just for the night I would wear something else. I pulled out a pair of control top nylons and used those. Cut off the legs (should have left them much longer but live & learn) and got my drains and padding all situated. It was then I realized the girdle had a hole for taking care of business. There was no way I was taking them off again so I made my husband cut out the crotch while I was still waering them. It was hysterical as we both are at that stage where we need reading glasses. It was so good to laugh deep belly laughter about all this. I got a much needed reprieve from my girdle so it was worth it.
Karen
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Ladies -- please don't post direct links to the Picture Forum. While it's true that you have to be a member with a password to access the links, we do ask our members not to put the info in a public forum -- and BCO is a public forum. Thanks! Lilah
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Nordy thanks so much. I wish I could have met you. Dr. M is so easy to talk to. She had me wishing we could do it the next Day!!! So now it Is countdown and "so much to do". M.arch 23rd... So excited so nervousf. How are you doing?
Thanks,
Kathy
ps. After this I am planning on a normal life Haha0 -
I'm worried and I hope you ladies can help me here. They were VERY clear that I am ONLY supposed to sleep on my back. In the hospital I was in a hospital bed and kept the head somewhat riased. At home, I'll have a reclincer to sleep in with the head raised. But here at the hotel, all I have are a pile of soft pillows. How am I supposed to ensure I don't roll over with just that? It's 2 am. I just woke up at least partially on my right side even though I have pillows under my back and under boh arms. I've checked my drains and they look all right. But now I'm afraid to go to sleep. This is such a critical time and I've got four nights here.I'm at Homewood Suites. I don't want to wreck things after all this! Help!
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OK, I think we figured out a solution. We rolled up the comforter and shoved it under my knees. I think it will work. Nothing like panic posting at 2 am!
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Glad to hear you have figured it out... I used a pillow under my knees at the HWS, and when I got home used a wedge (you can buy at bed bath and beyond)... There was no way I could have laid flat after either the DIEP or Hip flap surgery.
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Hi DJ,
I am not sure what type of cancer I have or the chemo. I have not seen the pathology report yet. I would think they would also wait until I have the PET scan to see if it's anywhere else. I will keep you posted.
Thanks for the tips on wigs, falls, etc.
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Journey,
Thanks for the "Packing for NOLA" list. It is perfect!
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Eva,
Hi! I haven't been on in awhile but have been trying to keep up with everyone.. I also had that problem with rolling over..my husband took couch cushions from living room (we were at homewood) and put them under mattress to raise the bed. It made me more comfortable and easier to get out of bed by meself. and then I made my nest with as many pillows I could get (kind of like a dam) I did cry myself to sleep a few nights wishing to be back in my hospital bed! I hope you sleep well tonight...it does get easier each day...thinking of you Dawn
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Thanks for all the great ideas. I'm feeling all right. I walked almost a mile and a half today around the french quarter with my sis. We wanted a muffaletta at Central Grocery, but it's closed Monday's so we had one next door at Franks. Then cafe au lait and beignets at Cafe du Monde. Then a cab back to the hotel. That was really enough walking for fifth day post op. My appt with Dr. D has been moved up to tomorrow morning from Wednesday afternoon. I know I won't be ready to get my breast drains out. I was really hoping to have those out before going home but I'm a juicy girl. I am not having much pain, but I have been getting headaches, which is annoying. I think a nap is in order. Best to everyone. Eva
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Good to move around, Eva. I remember on day my 5th day I spent 4 hours in the French Quarter (about half sitting), then I went back to take a 4 hour nap! Listen to your body. Rest as needed.
Caitlin, your scenario is a lot like mine. I'm just a couple months older than you. My 1.2cm IDC tumor was hidden by DCIS; not detected by anything. Thank God I had the other type of tumor I found, and I decided to go with BMX. I was also expecting surgery to be my treatment, so I had to get used to chemo fast. I met with my med onc about 1 week after I got home. I met with a radiation onc about 1 1/2 weeks after that. It was about that time that my chemo treatment was decided--so treatment plan decided less than 1 week before starting it. My MO presented at the tumor board; she'd initally recommended a lesser treatment with radiation. She said I'd need more aggresive chemo if no radiation. After talking to tumor board she decided aggresive chemo regardless. For me, radiation would not be a benefit. I think she might have had me do it had I not voiced my desire not to have it (based on clean margins, BMX, only 1 node plus AND). I never did have a PET scan.
I started chemo exactly 4 weeks from surgery. My MO did not want to wait another week on the surgeon to have my port put in, so I had my first chemo by IV. It was not a big deal. I got my port the next week. I had chemo every other week for 4 months. I had fun shaving my head, but it was hard losing my eyebrows and eyelashes. Now I am having fun with a short haircut. I did not buy a wig. I'm a stay at home mom and did not feel a need for a wig. I skipped wrap scarves and went with slip on scarves from chemobeanies.com (from New Orleans!). Hats did not feel comfortable to me. Though I did buy a couple of Buffs and wore one under a ballcap when I went on my walks. I had chemo the whole summer; it was hot so I was sort of pleased not to have anything on my head. Once you start exploring the options you'll gravitate towards what is right for you.
Good luck on your surgery tomorrow. How long do they anticipate?
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DJ Weinstein - I also had a seroma on my hip/butt area on one side. I didn't notice till about a month after I had taken the drain out on that side. I started to get a little suspicious that I was feeling fluid and asked my OB/GYN to look at it with ultrasound, and she wasn't able to see anything. Turns out she didn't have the right kind of ultrasound. Mine was pretty big the first time it was aspirated - 130ccs. I wish I had noticed it sooner so the pocket wouldn't have gotten that large. Ultimately I had it aspirated 10 times (all the nice people at the radiology facility knew me well by the end) and finally it got so small that it could be left (less than 10ccs the last time). I wore compression the whole time and sewed a pad of about 10 layers of terrycloth I cut from a towel so I could put extra pressure over the seroma. The radiologists also suggested reducing physical activity to reduce creation of fluid. I am still wearing compression just when I run.
Although I found it worrying at the time, really it wasn't that big of a deal. You have to wear compression and spend time getting it aspirated (although 10 is an unusually high number), but it didn't hurt at all and now it has gone away. While this was going on, I talked to Dr. Trahan about it and he said that most hip flappers develop small seromas that they are unaware of, and that they fix them at Stage 2. I hope this helps - good luck.
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Eva--I had to do stage 1 over and I wanted my healing to be perfect, so my hub rented a hospital bed (from a surgical supply store) for 1 month. It cost $200 and is electric, so it goes up and down and ensures you sleep upright. I have been using it for 3 weeks now and it is comfortable. I think the insurance is comping it too.
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I just have to vent a little. I had my pre op EKG done today and it was abnormal. They asked if I had chemo and I told them yes but have had two EKG's prior to surgery and they were normal. I have a stress echo Wednesday. I have a email in to my Internist. I certainly don't want to expose myself to chest Xrays if this is gonna be a no go. Sorry to gripe....just seems two steps forward and three back.
Eva, sounds like you are doing great! Happy to hear it.
Caitlin, Try and keep it positive. You WILL do well!
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Victoria, I'm all set up at home, but the crappy thing is I won't BE home for three more days. It seems crazy that this most critical first days out of the hospital have to be make do with pillows and bolsters and rolled up blankets.
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Downey! Try not to worry! I had an abnormal ekg before my stage 2 and had to see a cardiologist before my surgery. It will be okay! They just need to make sure you will be okay through surgery... And after as well! It is a pain, for sure. We will all keep our fingers crossed that all goes well.
Caitlin. This is really the hardest part... All the waiting to know exactly what you are dealing with. We are here to lean on, so use us! Once you have a plan in place it somehow makes things just a lttle easier. Did you check into Fertile Hope .org? I think they may have monetary assistance for storing eggs for those in need. If not, I think the Livestrong foundation might. It is all up to you. I needed to start chemo right away, so that was not even an option, but where you have had your mastectomies already, maybe it would be? Hang in there. See what you are up against, what your plan is, and then you and your hubby can make your decisions. There is still the chance that you could get pregnant afterward - it does happen! Hang in there. A million hugs your way.0 -
Eva, it is probably too late now, but I know Bev and some of the other girls used some kind of back/leg cushion... There is no way I can remember the name of it. They had it shipped to the hotel. I did sleep in the recliner at the hope lodge, and then on the couch at home. I figured I would not be rolling over on the couch! Hang in there. A pillow or comforter under the knees is a great idea and as a bonus also helps prevent low back pain!
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Downey - I had an abnormal EKG prior to my Stage 1. It was 3 days before I was to leave for NOLA. I was a wreck. I made an appt with the first cardiologist that would see me and drove about 1 1/2 hours to get there the next morning. I had another EKG in the cardiologists office and an ultrasound of my heart. I was cleared for surgery with no problem. So hang in there. This may mean a few more tests but they are doing it to protect you and keep you safe. Hang in there!
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Eva - Have you considered sleeping in either the chair or the couch in the other room (you are at the Homewood Suites - right)? Or have you gotten your 'nest' down now in the bed? I found that chair quite comfortable - although hard to get out of. Just have your sister help a little and you will be able to get out fine.
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Hi all.
Like Nordy said, I used this Back Max Wedge thing for one of my stages. You can search for it on Google but I stuck one of the links below. I use it at home too, I am actually leaning on it right now as I type! ha. (on sofa, tall ways up). Probably too late for Eva but I ordered it and had it shipped to St Charles. Then shipped it home from the Homewood Suites. For me it was helpful. Also, helped with getting in and out of bed if your tummy is involved.
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It's definitely too late to have something sent here. I'll be home Thursday. I think I'll be ok here. The next thing I'm fretting about is traveling. I have a layover in Denver on the way to Seattle and I have visions of missed or canceled flights, lost baggage... oy!
My post op with Dr. D was moved up to tomorrow morning. I know I won't be ready to lose any drains. I hate the thought of going home with all four. I should stop writing. I'm just feeling grumpy and my woes are small.
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Eva, the weather in Denver should not be a problem on Thursday. And as long as you have a good amount of time between connections, you should be okay, as far as your luggage making it. But losing luggage on the home leg is not nearly as bad as losing it going out
Safe travels. I had to take some pain meds on my flight. Those seats felt really hard after my SGAP!
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Eva call your airline and get wheelchair assists. You walk in and go to the desk and they appear with the chair and whisk you through security. You can get that for BOTH segments of your flight. I even had my helper stop at the bathroom so I could get up and go. I was also very honest and told them I had just had surgery, surgical tubing, etc. It was the BINDER (those damn metal clasps) that got me flagged each time. And don't cha know, the security guard had had bc herself!
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Thanks VIctoria. Because of the advice on this board I did make wheelchair arrangements. I hope I'll get through security without any problems. I wonder if the JP drains have to fit in the ziplock baggie with my facewash and toothpaste? ;-)
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