Tampa area BCO sisters II

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  • nbnotes
    nbnotes Member Posts: 338
    edited February 2018

    Thanks specialK. I have a couple of groups that I meet for lunch & just couldn't remember which we did. I'll need to keep an eye on time b/c I have to get to Clearwater for a celebration of life later in the afternoon, but really looking forward to seeing everyone.

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    Just came back from my post-op and I have to leave the drains in for at least another couple of days. My surgeon does not want me driving other than to run to the store, etc. so I am not going to be able to come to lunch on Saturday. I am really bummed. I was so looking forward to seeing everyone again!

    If by chance both drains stay below 30cc between now and Friday morning, I might be able to run back to Orlando Friday afternoon to have them taken out but he wants them below 30cc for at least 2 consecutive days. Doesn't give me much time!

    I'll let you know one way or the other on Friday.

    Ann/Snickersmo

  • kira1234
    kira1234 Member Posts: 754
    edited February 2018

    I'm still hoping I'll be there Saturday but I have the flu. I've been home 2 days already and am calling off for tomorrow. I feel miserable

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickersmom - drains are a pain, right? No worries on whether you can make it or not - we will have another in short order! Just take care of yourself - that is what is important.

    kira - ditto to you - I am so sorry you have the flu and are not feeling well. We will have another meet up soon, no worries.

    I will leave you both on the list pending assessment later in the week - just let me know so that we won't be worried on Sat if you are not there yet.

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    Thanks. My numbers seem to be going up instead of down so I'mgoing to lay low tomorrow and Thursday and maybe that will help!

    DH and I want to go to the carpet place at Wiregrass so if I can't come by myself for lunch with you all, we might come down together on Saturday. If we do, I will definitely make sure I at least stop in to say hello to everyone. Either way I will keep you posted.

    Ann

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickersmom - take it easy and keep us posted!

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    I sure will. Thanks!

  • TWills
    TWills Member Posts: 509
    edited February 2018

    I won’t be able to make it, making a quick trip home to visit my parents before my reconstruction in two weeks. I’ll catch y’all next time, with my new boobs lol!


  • kira1234
    kira1234 Member Posts: 754
    edited February 2018

    well still home sick. Can't believe I've missed the entire school week. So sorry

  • lee7
    lee7 Member Posts: 204
    edited February 2018

    I’m going to have to miss the luncheon tomorrow and will miss seeing eveyone.

    Hope to make the next one! Everyone take care.


  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    Kira/Lee7/TWills - so sorry can’t be with us. I think we will do another one real soon since there are several who can’t make this one. TWills, hope your surgery goes smoothly

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    Still have these stupid drains in and can't drive that far, so I will have to miss tomorrow. I'm hoping he will take them out on Monday but both sides are still above 30cc, so not sure.

    Have fun tomorrow and I'll plan on seeing you all soon at the next get-together!

    Ann/Snickersmom

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickers - we missed you, hope to see you next time and that the pesky drains slow down so you can get them out asap!

    As always, really enjoyed our lunch and having the opportunity to commune with all of you!

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    Thank you, SpecialK! As it turns out, I am pretty sure at least one side is infected. Had to call the surgeon last night around 11:30. As long as the drains pushing out fluid and I don't have a fever, he said I can wait until my appointment tomorrow morning.

    So very impressed with UF Orlando Health again. I called last night and got a young man who asked all the questions and then said someone would call me back. We all know what that's like - late at night on a weekend - and I figured I wouldn't hear from anyone for hours. I almost called back and cancelled the call! About 10 minutes later, I was called by a nurse, who told me that there are 2 nurses always there 24/7. She got the information and said she would all my surgeon and call me back. Again I figured it would be a while. What a surprise - another 10 minutes and she called back with his answers. It was a total of 38 minutes, start to finish.

    Sorry I missed the lunch yesterday. I know you all had a good time. I need to make sure I get to the next one!! I miss all of you.

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickers - I’m glad your center is so responsive, that is very reassuring. Did your doc put you on an antibiotic? When you have your appointment tomorrow ask about culturing for the specific bacteria, if infection is present. Getting the right drug, that is effective, is half the battle for infection of this type. The other suggestion I would make if you are found to have an infection is to have IV antibiotic. While that is a pain,it works much faster - some antibiotics take up to 72 hours to reach full strength.

  • bucsgirl
    bucsgirl Member Posts: 160
    edited February 2018

    We missed you too, Ann. I'm wishing you a speedy recovery with all of this. I know it's frustrating, but it will heal in time.

    Kira & Lee - Hope you're feeling better. We missed all of you!

    TWills - Wishing you well throughout your reconstruction phase.

    SpecialK - Thanks again for arranging the get-together! It was so nice to have a big round table where we could all communicate with each other. You always seem to find a way of making us all feel comfortable. 

    I'm looking forward to seeing everyone again soon. Heart

    Karen

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    I was right - nasty infection on the right side, so I am on antibiotics for that. He did take a culture and that should be back in a few days. The other side is fine but is still draining over 30cc every day. So the drains are still in until at least Friday. Ugh.

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickers - darn! Hope you are fixed up and non-draining fast! Once your infection clears you may find that you drain less too.

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    Yes, that's what he said would happen. Right now, I just have to concentrate on feeling better and getting rid of this infection. I just hurt, hurt, hurt. Hoping that the 3 doses of antibiotics I'm taking today will kick-start my system and start to get rid of it.

  • patoo
    patoo Member Posts: 5,243
    edited February 2018

    Hi all, sorry could not make your luncheon. Was expecting 21 ladies (16 showed) for dinner on Sunday so Saturday was cleaning and start of cooking, to prepare for them. Will try and make one of your future ones though my schedule with activities and volunteering is crazy so we'll see.

    Phyllis

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickers - hope you are feeling better each day!

    patoo - we missed you, but it sounds like you were a busy bee! Come and lunch with us when you can!

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    As luck would have it, the culture and sensitivity results came back this morning and I have a staph infection. So now I am on a different antibiotic than I had yesterday. I do feel okay - just bummed. The drain site on the right side is so red, swollen, and itchy but at least both sides are draining. The plan has been to take the drains out on Friday if they are below 30cc, but now he thinks he might want them to stay in until the infection clears. He wants me to lay low for a few days so that I don't run the risk of catching a cold, flu, etc. from anyone. Hoping to be feeling more like myself soon.

  • nbnotes
    nbnotes Member Posts: 338
    edited February 2018

    Just thought I'd give an update on my petscan since I was anxiously waiting on results on Saturday. The results were a bit mixed. The lymph node area is definitely smaller and less bright, but the liver area is still the same size and shining brighter. I'm going back on the beast known as Afinitor, but will be doing only 7.5 mg this time in hope that the side effects will be better. If they aren't, we'll go on down to 5 mg. I have such mixed feelings. I want to keep this combo as an option for as long as possible, but I'm also very nervous about beginning the drug again tomorrow night. Thank you to those there on Saturday for helping to keep me sane during the wait!

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    snickers - exactly why cultures are so important. It always surprises me when they aren’t done. Hoping you start to feel better now that you have the right drug - hang in there.

    nbnotes - a mixed bag for your scan, but hoping the reduced dose means you can proceed without the SEs you experienced - crossing my fingers for a smooth road. If I can help you in any way, please don’t hesitate to let me know - glad we could lend a group ear and a shoulder on Sat. - that is for always.

  • snickersmom
    snickersmom Member Posts: 599
    edited February 2018

    nbnotes - sending you positive thoughts and lots of prayers. Hope your SEs are not what you experienced before. Hang in there.

  • bucsgirl
    bucsgirl Member Posts: 160
    edited February 2018

    Nancy - I've been thinking about you. I'm hoping that your side effects are decreasing with the new dosage and medication. I'm also happy to hear that the lymph node area is smaller on the scan. If I remember correctly, your last scan was a year ago. It's good that there was no increase in the liver area, right? I don't know much about the SUV scale when it comes to hot spots, but I'm hoping & praying that there will be more improvement with that too.

    Oh, and I hope you were able to find some good deals at the Loft. I'm planning on going there in the next couple of weeks. It beats driving all the way to Ellenton.

  • Flynn
    Flynn Member Posts: 208
    edited February 2018

    Sounds like you ladies had a wonderful get together! I had hoped to join but we took advantage of our sons’ 4 day weekend and got out of town. Hope to meet you all next time!

  • specialk
    specialk Member Posts: 9,261
    edited February 2018

    Flynn - sorry we missed you - or you missed us, lol! We will do it again soon, so keep watch and hope to see you

  • Galsal
    Galsal Member Posts: 754
    edited April 2018

    My best to all, sorry for having been absent. I'm curious - has anyone shown to have a cyst on the Kidney? Thankfully, labs so far look okay. Also, ultrasound of it deemed it could be followed up on in a year. Then again, that was at the VA. Thanks.

    Sal

  • sarahstronger
    sarahstronger Member Posts: 5
    edited April 2018

    hi ladies!! I live in St Pete and have been searching for a breast cancer support group. Do any of you attend one or maybe have any advice to help me find one? I am still new to breast cancer and it seems like talking to other women who are going through the same thing helps me the most. Thank you in advance for any help you can offer! Hugs to you all ♥️