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Zoom Meet-up for Those With MBC: Place to keep chatting

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Comments

  • luvdbyhim
    luvdbyhim Member Posts: 190
    edited March 2023

    Cheryl thats terrible about the dog bite! I had a dog bite me about two years ago. It was my cousins dog. I was going to visit her because her husband just passed away. The dog got my hip around to my buttocks. (guess he thought it looked like a ham hock) I literally was bruised for a good 6 weeks - and I do not bruise very easily! Now I steer clear of anyone walking with a dog. You just never know. They are animals and while everyone thinks there baby would never do something like that they could!

    And I also wanted to say thank you to everyone on the Zoom calls. First, I feel like you get me. LOL. I appreciate everyone sharing and I am glad the things that are said either are how I am feeling or questions I have. Talking to people who do not have MBC sometimes makes me want to scream. Just be happy for the time you are here, don't worry about this or that, you shouldn't be doing this you should be doing that. It is very frustrating and kinda of isolating. I have a wonderful support system but everyone in the support system deals with things differently and I am not free to say certain things to certain people - because they can't handle it (think of Jack Nicholson here)

    Secondly, I am still trying to figure out who everyone is. Your screen names are different than your zoom names. So I am not sure who everyone is.

  • silviah
    silviah Member Posts: 35
    edited March 2023

    Hi everyone,

    Asemo here. I've not been on here or some meetings lately. Nothing wrong(more than usual anyways) just been stupid busy. My youngest son (24) and his girlfriend are having a baby - so I've been helping them get stuff ready. I'm excited - but skeptical at the same time. She's definitely a piece of work, but I just keep telling my self - if he loves her, I love her too. At least like...hahaha.

    I wanted to ask what the name of the tumor markers are?? I get the CA 15 3. I'm just curious if I should be getting the other one as well??

    I should be able to get to the meetings this week. Looking forward to "seeing" you all there.




  • AKJ
    AKJ Member Posts: 115
    edited March 2023

    I checked in to a couple of the zoom meetings the last couple of weeks. It was so refreshing to talk to people who are in the same boat! I didn’t have to explain my situation over and over. Thanks!

  • seeq
    seeq Member Posts: 1,185
    edited March 2023

    Asemo- I don't know how much I'd worry about the tumor markers some MOs don't run TMs at all, and for some people, they are not a good indicator. My last MO ran the 15-3, and it was a good indicator of my progress. My current MO seems to prefer the CA 27-29. I have one result for a CEA from 2021.

    A new grandbaby sounds like so much fun. Congratulations!

  • seeq
    seeq Member Posts: 1,185
    edited March 2023

    akj - the groups are so supportive and informative. I'm glad you found them (us!)

  • aprilgirl1
    aprilgirl1 Member Posts: 805
    edited March 2023

    Asemo - I am Susan from the Tuesday night zoom:) congrats on your future grandbaby. Regarding tumor markers, my onc orders the CA 15-3 and CEA blood tests with my cbc and other monthly blood work. However, I have never had these elevated, even when I became stage IV. Some people can really tell if things are shifting by tumor markers but so far that has not been true for me.

    I'm sorry I missed our zoom this Tuesday - I had a work meeting/ conference that was an all day event and I didn't get home until after 7pm. I'll be there next Tuesday:)

  • cowgal
    cowgal Member Posts: 625
    edited March 2023

    Susan we missed you but completely understand.

    Asemo - I am another one that tumor markers are not reliable for. Like Susan, mine never were elevated when I got diagnosed with recurrence at stage 4.

    akj - Glad you have found the meetings helpful. I agree with you.

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    luvdbyhim, I write my first name and my screen name next to it so people know who I am. I don’t think I’ll be able to make the Monday or Wednesday meeting this week.

    I missed you Wednesday, Asemo.

    Kris

  • luvdbyhim
    luvdbyhim Member Posts: 190
    edited March 2023

    Kbl -I appreciate you do this...I know who you are now.... On and off zoom LOL

    Good luck on your study/trial

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    Thank you. I’ve checked in to the Hope Lodge. It’s nice here but just a tad feeling like I’m in a hospital. It’s pretty cold, otherwise I could sit on the terrace that’s right outside my room.

    I’ll update on the trial after my appointment tomorrow. I’m sorry I won’t make the meeting.


  • moderators
    moderators Posts: 8,743
    edited March 2023

    Good luck, Kbl! We're thinking of you!

  • cookie54
    cookie54 Member Posts: 874
    edited March 2023

    Sending positive vibes and hugs to you kbl.

    Hoping to be able to make another zoom . I have only been able to pop in on the Wednesday twice, hoping I can soon. Hope you are all doing well.

    Andrea

  • illimae
    illimae Member Posts: 5,745
    edited March 2023

    Good luck Kris!

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    Thank you, Mods. I appreciate you.

    Andrea, I hope you get to as well. I can’t make either Monday or Wednesday this week.

    Thank you, Mae. I’ll miss you tomorrow. :

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    Cheryl, I hope you’re okay. I miss your usual Sunday update.

    Kris



  • temerarious
    temerarious Member Posts: 23
    edited March 2023

    Hi Kris - Thank you for posting to let us know what's happening for you this week - I'm thinking of you and sending love.

    Start of Week 7 now. I really appreciate everyone's empathy and support following the dog bite. I'm off the antibiotics now, and the puncture wounds are healing. I can't believe how many people have been bitten by a dog! I'm totally an animal person, but I had no idea how common that is. The dog bite really threw a wrench in my self-care routine, but as of Saturday, I'm recommitted to my workout schedule. (I even walked in the rain this weekend - which is a very rare occurrence in Southern California!!) I also was able to get all of my scan appointments scheduled in June and get my Xgeva appointments on the calendar through October. (This is really important so I can plan them for days I'm not working.)

    Between this temporary job assignment, the remodel, the cancer appointments, the dog bite ramifications and the crazy weather, this week was a little rough, but things are improving. There are only two more big ticket items for the bathroom - they had to remove the mirror they chipped before they installed the faucets, so I'm waiting for them to come back and install the new mirror. Then the last big item will be the closet doors. My contractor seems to have me at the bottom of the priority list, so it will probably still be a few weeks, but we're inching forward.

    I will miss you guys today, and I'll check in again either next Sunday or Monday before your call. I hope everyone has a good week.

    Cheryl

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    Thank you for the update, Cheryl. I can’t even imagine how hectic things have been. You did not need a dog bite on top of it all.

    One thing I will say is I’m glad I’m not on Xeloda right now. My skin would be peeling off with the amount of hand sanitizer I’m using. This town is very hectic, and the hospital is huge and very busy.

    I was so sad to hear that Joanne passed away. I will miss her smile and awesome personality. I wish I knew her user name on here, but I can’t remember if she was even on the forum itself.

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    My imaging trial testing is done. The radiologist said they have three people look at each scan. Sadly, he unofficially told me the first scan didn’t show my cancer. He did say the second one may reveal more. I wish I understood more on why scans can’t see it. Anyway, maybe I’ll have more info before our Monday meeting. Time to head back home. The Hope Lodge is a very nice place to stay. It’s from the American Cancer Society. I appreciated being allowed to stay here. Since I was only here three days, while others are here for an extended time, I didn’t strike up a conversation with too many. I pretty much stayed to myself. It was nice and quiet for me.


  • temerarious
    temerarious Member Posts: 23
    edited March 2023

    Kris - I'm thinking of you, and I hope you've been able to get some additional information from your scans. I admire the way you have approached the imaging trial. You make an effort to notice the small things in your experience that are positive. I know for me that isn't always easy, but I've learned that it helps me to stay grounded and in the present. I find it very difficult to maintain that perspective in the middle of waiting for procedures to start and then waiting for the outcome. Your kind nature and your strong personality shines through in what you share. I hope your trip home was uneventful and you are able to spend some time with your grandson soon.

    Start of Week 8 - my update will be brief tonight. The 'drama' of this VP position is playing out a bit tomorrow. I have to get up at 4:45am to catch our company plane to our sector headquarters about 80 miles away for an 8am meeting. (As bad as that sounds, it WAY beats driving in LA.) Then I have to present to our Sector President at 10am for an hour. Then I fly back to LA X about 4pm. I'm a little unsettled - not so much stressed as miffed and annoyed and irritated. This dog and pony show is not my thing. But it's part of what I signed up for when I said I would help, so I'm putting one foot in front of the other...

    I got to use my new bathtub for the first time yesterday - it was AWESOME. I installed an infrared glass heater on the wall over the tub, and it works!!! I stayed in the tub for an hour and never got cold! The bathroom is going to be so fantastic when it's all done. I decided to take matters into my own hands regarding the endless schedule, and I've hired a painter that I've used for many years to work some of the 'punch list' items since the contractor is taking SO LONG. (As of the first week of March, this project has been going on a year.) Anyway, for those of you who remember 'Murphy Brown' this painter is my Eldin. He no longer paints as his fulltime job, so he can only work for me on nights and weekends (which I love because it doesn't interfere with work), and he's the slowest painter EVER, but he does amazing work with great attention to detail. Anyway, in spite of his pace, I'm still making WAY faster progress with him vs. the contractor. "Eldin's" already patched the two holes they punched through my ceiling 11 months ago and painted the room. He's so great. My cats are starting to bond with him.

    Well, I've written much more than I intended (so much for 'brief'), and I haven't even done my selfcare check-in. It has been better this week. I was able to walk every day but one day. (Yesterday, I was so exhausted, I decided to take a break.) And I did my yoga practice about 4 days. I'm holding strong.

    I'll sign off now because I'm using so much white space here. I hope you are all doing well, and I'll be finishing up my presentation tomorrow when you're on your call. I'll be there in spirit, and I'll check-in next week.

    Cheryl

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    Cheryl, wow, thank you. I appreciate what you’ve said so much. It made me smile.

    I’ll be talking about my scans today at the meeting, but both scans saw nothing. Frustrating, yes, but it has brought me to a place of acceptance that scans are not my friend. I will have to rely on symptoms and tumor markers.

    I’m so glad you have someone doing the work for you that the contractor is not doing. Why are they such a pain in the ass?

    Your bath sounds luxurious. I’m so glad you at least got to relax for a little while. Good for you keeping up with your self-care.

    It’s crazy how long you’ve been in the temp position. I hope they can get someone to take over soon. We miss you.

    At this point, I think you’re in your meeting. Have a safe trip back.

    Hugs to you, and thank you for the update and sweet words that have lifted me up today.

    Kris

  • going2beatthis
    going2beatthis Member Posts: 210
    edited March 2023

    Cheryl

    Good luck with your meeting today. I know you will get through it with flying colors Nerdy Can't believe this is week 8! Hope they give you can update on how much longer it will be till they find someone to fill the position and you won't have to deal with this.

    Glad you were able to enjoy your relaxing bath and got some self-care activities done last week. Great that your “old" painter is able to do some work for you. Am sure that is a relief

    Safe travels.

    Fay

  • temerarious
    temerarious Member Posts: 23
    edited March 2023

    Hi everyone,

    Start of Week 9. No update yet on the timing for the permanent person to fill the job. I was able to get my walk in every day except one this past week, but I haven't done as well with my yoga. I need to put a focus on that this week because it really helps with my mental health.

    I had a friend visit from out of town this weekend, which was really nice, but for some reason I'm feeling a little down since she left. I don't have a lot of clarity on what's causing me to feel this way. I was very tired following her visit, so I didn't do much yesterday except rest. Mood is such a strange thing. Nothing has changed, but I definitely feel a little glum today. It might be as simple as missing yoga and not eating as well as normally do because of her visit (too much restaurant food and sugar).

    Everything is fine, but my perspective is a little off. I'm going to make sure that I prioritize my selfcare this week - walking, yoga and healthy food.

    I'm thinking of all of you, and I'll check in again next week.

    Cheryl

  • going2beatthis
    going2beatthis Member Posts: 210
    edited March 2023

    Totally understand what you are saying about too much restaurant food and sugar. I keep telling my husband that I want to cut down on eating out for the same reasons plus when I am preparing meals at home I know exactly what I am putting into my body.

    Hope you are able to get back to your selfcare routine this week!

    Miss you. Sending love

    Heart

  • kbl
    kbl Member Posts: 3,017
    edited March 2023

    I’m Hi, Cheryl!

    I'm so glad you got to visit with your friend. I have exactly the same reaction sometimes after a planned event, like having my grandson. I look so forward to that, and when he goes back home, I have a few sad days. I'm usually exhausted, but the anticipation of having him is gone, so there is a little let-down.

    I can't believe it's been nine weeks. Time is flying, but maybe not for you. I hope we get to see you soon.

    Kris



  • temerarious
    temerarious Member Posts: 23
    edited April 2023

    Hello everyone,

    Start of Week 10. It turns out the reason I was feeling so out of sorts last week was because I was getting sick. :(

    I started feeling the symptoms of a nasty cold/flu on Tuesday morning. It wasn't Covid (according to 2 of my expired home Covid tests), but it was not trivial. I was really sick on Wednesday and Thursday, and I still have a bad cough one week later.

    So... I wasn't able to restart my workout routine last week, but I did feel well enough to go for a short walk on Friday and Saturday. I also was able to do a yoga class on Saturday. I'm still a long way from completely recovered, but definitely feeling better. I'm planning on yoga and walking later today.

    The good news is that I started packing for my trip to the Amazon (which departs in less than a month now!) If anyone is interested in the tour details, here is the link:

    Amazon River Cruise | Peru Adventures | Natural Habitat (nathab.com)

    This week will be focused on recovery. I'm so glad to read your postings and hear from you guys. Take care and I'll check in again next week.

    Cheryl


  • kbl
    kbl Member Posts: 3,017
    edited April 2023

    Cheryl,

    I’m so sorry you got sick but am extra glad it didn’t happen a month from now. I’m glad you’re starting to feel better and hope you got some extra rest. I will look at the link you’ve posted later today. Hard to believe how quick the trip is coming. Thank you for the update.

    Kris



  • going2beatthis
    going2beatthis Member Posts: 210
    edited April 2023

    Cheryl,

    So sorry to hear that you are still somewhat out of commission with the lingering effects from the flu. Hopefully you'll be able to get some rest and knock it out of yourself before you leave on your amazing (I looked at the website) trip. Is this the first one you are going on with Natural Habitat? Their trips are very appealing to my husband and me, especially the ones for photographers (him not me). Time for us to start planning on doing one?

    Have a good week.

    Fay

  • mojos
    mojos Member Posts: 41
    edited April 2023

    Cheryl,

    Your trip looks terrific! I hope you are able to concentrate on healing yourself as opposed to doing lots of work for your employer.

    Mary Jane

  • temerarious
    temerarious Member Posts: 23
    edited April 2023

    Hi everyone -

    Start of Week 11. I was pretty much down for the count for the past 2 weeks, This cold/flu thing that I caught was brutal. I'm still coughing, but I started to feel much better on Saturday. I have been able to rest, and I've been getting shorter walks in over the past few days just to try to start back up again. I've practiced a couple of gentle yoga classes as well.

    Fay - this is the 2nd trip with Nat Hab. The first was to the Polar Bears. My experience with them on that trip was great, and I will let you know how this one goes.

    I have to go into the office today, so I have to sign off for now. Thinking of all of you.

    Cheryl

  • moderators
    moderators Posts: 8,743
    edited April 2023

    Thanks for the update, Cheryl!! Take care of yourself. We miss you, but are happy you're traveling Medicating

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