NOLA in September?
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Sharon...yes Dr M is awesome. I originally was going for stage 2 on June 24th but my date is now --oh crap--Wednesday for a lymph node transfer instead. You will love her. Sorry I will miss you there.
bags are packed...tomorrow will be a chill day. Just gotta run out for some last minute stuff...not overpacking cuz then I would have to lug it home. 13 days is a long time to be away from home but...did it last time so here we go again!! This time it's my turn baby...no complications..it's all going to be perfect!!!!!
Maggie-2
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I'm excited to get this tumor out. I have spent time in Nola. I am originally from Louisiana. I am blessed to ave an Aunt there. We will most likely stay with her.
Good luck Maggie!0 -
Sharon, I am also a Massey patient. Wonderful lady, surgeon, and all around person. You will find yourself very comfortable with her and she will do a beautiful work on you.
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Maggie, this is definitely your time to shine and have NO issues! No worries and a very successful lymph node surgery. Sending prayers your way. Hugs
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Update: I was admitted to VCU neurological unit. They did an MRI of my eye and say I have an inflamed optic nerve. They will do more tests in the morning. I have lost 80% vision in my right eye but they think it will return once treated, which is the best news I've heard all day. Earlier today they were not as encouraging. Not sure how long it will take to return. They will give me steroids or a spinal tap to heal the nerve. They have no idea what caused this, said it could be autoimmune disorder, of which I have a long history of different autoimmune disorders cancer being just one. I think this started when I had a migraine after surgery and started to notice the loss of eyesight when I started being more active after my postoperative appointment. Before then I stayed in a dark room because of the migraines which I've never had before. I thought it was just a cloud caused by the pain meds but when I told Laura she said it was not a side effect of the meds and to see an eye doctor. So I went to see an ophthalmologist that same day who took it very seriously and said to call this neurological ophthalmologist if it got worse. I didn't realize how bad it was until they did a test and asked me to cover my left eye. i could not see anything, like a curtain was over my eye and i could only see the top part. I started backing off my pain meds and the pain got worse and I couldn't get through the neurologists answering service because I was not an established patient. So I called my ophthalmologist and he got him to call me, and after talking with him we decided I needed to go to VCU ER, which I might add is a miserable experience. It is the city hospital and the waiting room is a scary place where it is normal to wait 4 hours to get a room. Last time i came here i walked out before they admitted me and swore i would never come back. While I was there they admitted a gunshot patient and put the ER on lock down where no visitors were allowed back with the patients. I saw a guy with gang tattoos all over him, people who had not bathed in days, reeked of cigarettes, truly awful. There was a room with 2 corrections officers stationed outside. I waved at them, silly me, because i work in IT in corrections but of course they had no idea who i was. But it's the only hospital in town with the specialists I need. I do my oncology here also, but at another facility. Total different experience, it's a major cancer center. The nurses are nothing like Nola, my nurse is nice but when I call the call button the lady that answers has a really negative tone. I try to be nice to my nurses and I don't need her ugliness. Anyway they have given me all the meds I need and let me take a shower. My only complaint is they did not feed me and I had to get my mom to go to a restaurant. I checked in at 1 pm and got admitted at 10pm and of course they had nothing gluten free to eat. I started asking about dinner at 6 pm in the er but they can't feed you there for some reason.
I'm still pretty scared, but hopeful that this can all be resolved.
I'm also afraid of MRSA and paranoid about keeping a sterile environment. I hope I don't get a roommate tonight.
I hope I can sleep in my own bed again tomorrow night. That was so lovely last night.0 -
Marsha, I am so sorry you are going through this.
I imagine the "logic" behind not feeding people in the ER can be to avoid "fake ailments"just so people can get food. Another might be the ailment being addressed could lead to some type of surgical procedure or testing and finally, just the time to get food in and out of the ER.
Glad your Mom was there to get you food.
Sounds like you are getting some good care. Relax while you can, soon enough you will be home dealing with the everyday things. Continue to be nice to those nurses, I'm sure they aren't used to it! And are quite overworked anyway, like most nurses in "regular" hospitals. Hopefully they aren't addressing pain meds for you, if they are, ring early, ring often...the squeaky wheel gets the oil in those settings!
God Bless, I hope this problem is resolved quickly.
Pat0 -
Marsha, lord. I hope all will be well!!
Sharon, I posted your June 21 surgery to the listing above.
Here is the "short list"!
May 21 - Barbmal5 - PBMX, Dr. D., NOLA.
May 22 - Mags20487 - Stage "1C" with Dr. M.
May 23 - Zandy - Stage 2, Dr. S., NOLA.
May 24 - KSue - Stage 2, Dr. D., NOLA.
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Wow! A lot of girls going in this week. We are all here for you and can't wait to hear from you.
Have some fun in Chicago Maggie. It truly is a cool city. There is a boat ride thru the city that is worth the money. They have anything you would want to do. Museums (use to be free on Thursday), jazz and comedy clubs, great restaurants, Shedds Aquarium, Art galleries, and of course sit on the beach and put your toes in Lake Michigan. No sharks guaranteed. Keep us updated. Thinking of you.0 -
Marsha.... What a total drag... Keep us posted.
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Marsha I am horrified for you. Talk about complications.... just crazy... I'm glad you are being watched medically now. It will get better.... it will.
Cornelius (left hippy) is offically outta there. I honestly couldn't take it another moment... I called Laura this afternoon. The damn drain is so so so sore I could hardly take it another minute. It burned constantly... I was at about 22-24cc last two days and Laura gave me the ok to pull. Thank the Lord. 19 days... don't know if that's short, long, or average but I just know I was at my breaking point.
Having a little complication with healing of incision on righty.... it's splitting a bit and is looking a little ugly. Worst case senario Dr. D will be bringing me back to NOLA for a Thursday surgery. Right now... lots of Betadine and prayers.
Barb have a wonderful trip.... Mags, go girl!
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mother...I really hope the incision resolves itself soon! Keep a close eye on it. Happy for the drain out..woohoo. 19 MINUTES is too long to put up with a drain
Having a nervous day. But I know that this surgery will be just a piece of cake!
Marsha...will be looking for updates. I hope they take care of it soon....thinking of you
Maggie-2
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I hope everything resolves well, Marsha. It's truly horrifying to wake up one day and have a reduced field of vision. It sounds like you shouldn't have permanent vision loss. Thank goodness it isn't a detached retina....because that means surgery ASAP.
Good luck Maggie! Hope you are complication free this go round. It's your time.
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FREEDOM!! Second drain is out, which means I can fit into my slim fit dress for a family wedding next weekend. I almost reached through the phone and kissed Dr. Marga.
Marsha- Sure hope things resolve for you soon. Keep us posted.0 -
Congrats on the no drains Jennifer and Cherrie.
Jen I hope you don't have to do a return trip, but I know it always feels better to take care of things rather than wait.
Good luck with your next surgery Maggie and all those who are coming up.
Update: The neurological ophthalmologist diagnosis is Ischemic optic neuropathy which is damage to the optic nerve caused by a drop in blood pressure or low oxygen. This most likely happened during my surgery when I had a hematoma followed by a blood transfusion. He said this is very rare and my surgeon might see this once in his career, and that he only sees a few cases a year and it is his specialty. He is one of 2 doctors in the Richmond area with this specialty. He will put me on prednisone for the next 2 months to help with healing. He says the body is not good at healing this type of damage but it is possible that there could be room for improvement as the swelling goes down over the next few months. The damage to my eyesight could be permanent.
I still have full vision in my right eye but my eyes get strained easily and bright light and noise is painful. I am hoping these symptoms will improve as the swelling goes down. I cannot drive or work in my current condition.
I am devastated. This is so much worse than the cancer, which I always knew I would recover from.
Everyone wants me to have a positive attitude as if that can heal everything. To me it just means they are not ready to accept and grieve my loss. Whatever will happen will happen, and me sitting in denial isn't going to make it go away.
These people did not hear what my doctor had to say. I've lost my fertility, my husband, my ovaries, my sex drive, my breasts, my energy, my eyesight. These things are real and I know a lot about grief. It doesn't go away by sticking your head in the sand or making light of a Shitty situation. I will manage through this like everything else. I will find a way to work through it, adjust and transform my life. But for right now I am grieving and no one else can do that for me. On my caringbridge site I just asked people to subtly acknowledge it. It's amazing how ill equipped the average person is for that simple thing.
Marsha0 -
Marsha1970 I am so sorry that you are going through even more. I hope your eyes fully recover.
Sharon0 -
Oh Marsha... so sorry. I would call the Center and ask for the anesthesia report... That might help with figuring out what went wrong. They monitor the BP and oxygen so carefully, so it seems odd that it was or could have been caused by that.
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Well I made it to New Orleans & I see I made the "official" Springtime short list.
I'm sitting in the Home Wood chilling out with my mom after walking around Bourbon street. (Once is enough for me too). Pre-op tomorrow. Surgery (Diep) Tuesday @ 7 am. Getting a little scared.
Mags, Zandy, Karen best of luck with your upcoming surgeries. I'll try to pop over & see the NOLA gals.
Saying a prayer & sending positive thoughts to those having troubles.0 -
Marsha - I pray that you will recover some eyesight when the swelling goes down.
Yippe to those of you who are now drain free - not looking forward to having those as my friends again.
Cherrie - Will be thinking of you tomorrow. You will do great!
Barbmal5 - I started packing today. It is all becoming too real! See you soon.
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Marsha - I am so very sorry for your loss. My DH has a retinal swelling that we have been working with a retina specialist for more than 18 months - even trying experimental procedures. They say it may have happened because of an abnormal spike in BP, although we haven't seen any problems and monitor regularly. There are times he sees well and times, things are a bit foggy. All I am saying is that you are very early in your treatment for the eye problem, too early perhaps to grieve that particular loss.
Cherrie - WooHoo! Love the drain loss so you can wear the skinny dress.
Maggie - this is gonna be your week. All will go perfectly!
To all the girls up this week, we'll see you on the other side.
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Marsha, so sorry! I will be praying for your eyesight. You have been through so much and I understand your sorrow and that feeling like others don't understand.
Cherrie and Jennifer - great news on the drains. I still have both my hip drains. I don't mind them so much - it's just a pain trying to hide them.
Biggest thing for me right now is trying to decide if I'm going to take the tamoxifen. I hate all the decisions! It feels like I'm playing Russian roulette with my life!0 -
Wow, I've been away for a few days & lots to catch up on.
Marsha I am so sorry!! We are here for you to vent to. You are in my prayers!!
Mags, this is your time!!
Barb, glad you made it and had a chance to venture out a little bit. You are going to be do great and you are going to love Dr. D
It's been a crazy few days with chaos at my house, but here to start another week
I have my first appointment today with the lymphedema therapist. I am a little nervous on what she might say and do, but we will see
Hugs to you all!!!
Chelle0 -
Errrrr...just got searched by tsa for the washcloths shoved ib my compression...whole time they were apologizing....irritating
Maggie0 -
Mags,
So irritating!!!! Even with the note from dr d, they brought me in a room and had me pull my drain out so they could see it , then they swiped my hands with a cloth and put it in the machine to see if it had any explosive residue !! REALLY?!?!?!
I can't believe how ridicules they are... Dr d staff is pretty thorough and even has the name of the head of security in Nola listed on the note.
At least it is behind you and now you are on your way to getting things right so you will feel better.
Good luck this week 😘0 -
That is terrible news Marsha. I truly, truly feel awful for you.
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Marcie - I have a trip planned back in Chicago in June (a reunion with my school buds) and I have visions of me just flashing them if they complain or have a problem with me at the TSA checkpoint! I am usually the one picked out of a crowd to have my hands swiped or bags checked. Certainly not profiling if you knew me, but seems my number just gets it! BUT seeing as I have no nipples - and my chest looks somewhat like a patchwork quilt (as does my lower body) - I thought I'd just wear no bra and lift the shirt to show I'm in 'reconstruction' and not a threat to the air!
My oldest son when we started discussing to nip or not to nip and 3D said I should just go Barbie Doll so I could go topless during the summer.......... duh, bet he'd have 2nd thoughts if it was around his friends!!!!
Marsha - so terribly sorry for all of your losses. Good thing is that you did become proactive and found some answers to your problem. I know this is a tough time, but I think from your posts earlier you are a tough cookie and will eventually find a way to make all of this work. Just sucks that it's happening all at the same time and NOW!
People mean well, but sure say some dumb things!
Hugs
Catie0 -
Oh Marsha! So hoping as the swelling goes down you will have your sight back. It must be very scary and lonely to go through something like this. On top of everything else you are still dealing with your post surgery. So sorry! One day at a time and this too shall pass. You are in my thoughts and prayers!!
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Marcie - I got swiped going through security, too. Actually, I welcomed the opportunity even though I had a letter from Dr. M. These days, the bad guys are getting more and more creative. They could easily create a medical travel letter. I would so rather they pick me out and have me touch the drains then check for chemicals. Just imagine what could be hidden in a drain in the wrong hands. We love to blame TSA, but I am thankful that someone is there to check.
Maggie - were you wearing the zipper compression garment? My zippers have set off the TSA screening.
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I had my hands swiped for explosive materials. They were very kind about it.
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So sorry Marsha. So very sorry.
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Hi Audrella,
Who did your recon? I am thinking about using Dr Mitchell in Tulsa.
I am very nervous about having it done though.
Michele0
