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

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  • going2beatthis
    going2beatthis Member Posts: 191
    edited April 2023

    Thank you to everyone on Wednesday's Zoom Meet-up for all your hugs and love. It was really appreciated and helped immensely. Heart

    I just got a call from the imaging center. All is a go for tomorrow at 7:15am! Medicating

    Crossing my fingers🤞🏻 that it gives some answers and that I am still in remission.

    Have a great week. See you all next week (hopefully with some results to report).

  • moderators
    moderators Posts: 8,570
    edited April 2023

    Going2beatthis, YAY!! Well done! Advocating for yourself paid off. Medicating

  • kbl
    kbl Member Posts: 2,963
    edited April 2023

    Hi, Cheryl!


    Fay, I felt so bad for you. I’m so glad they’ve rescheduled. I’m not always on the Wednesday meeting, so if you report there, please keep us informed here as well.

  • AKJ
    AKJ Member Posts: 115
    edited April 2023

    going2beatthis, I hope you get some answers soon! You’re always so upbeat on the zoom meetings and I felt bad that you were upset. Keep us posted

  • temerarious
    temerarious Member Posts: 23
    edited April 2023

    Hi Fay - I'm so sorry I'm not on the call to hear the specifics. I'm thinking of you, and I hope the results of the imaging are available to you soon.

    Start of Week 12 at work. It's really surprising that they have not yet found the permanent VP, but I'm leaving on my Amazon vacation in less than 2 weeks regardless. My recovery from the cold/flu thing was LENGTHY. I still have a slight cough 3 weeks later, but otherwise, I'm finally better. I was back on track with walking and yoga at the end of last week, but somehow, I hurt my right knee (heavy sigh). I have no idea what happened, but it started hurting on Thursday. I had partial knee replacements in 2018, and I've had no problems until now. I'm going to hold off on walking for a few days with the hope that rest & ice will take care of it.

    I really miss seeing all of you in the meeting, and I hope my vacation will prompt my company to find a new CIO so I can return to our calls when I get home in May! I'll check-in one more time next week before I leave on my trip.

    Cheryl

  • kbl
    kbl Member Posts: 2,963
    edited April 2023

    Hi, Cheryl!

    I’m glad you’re feeling better. Those coughs can last forever. I’m so sorry you hurt your knee. I hope it feels better before your trip. I miss you at our meetings, and I can’t believe it’s been three months. I am sure they don’t want to replace you because they love the job you’re doing. “See” you next week for your update.

    Kris



  • temerarious
    temerarious Member Posts: 23
    edited April 2023

    Hi everyone -

    Big thank you to Fay for telling me about the site maintenance and downtime. I know most of you will probably not see this update until after everything comes back up, but I wanted to post tonight because this will be my last post until I return from vacation. I will be home on May 15th, so my next post will be later that week.

    Start of Week 13 - I found out this week that my tenure is the longest time period for an acting VP & CIO. The longest acting role previously was 11 weeks, so I've officially set the record. I REALLY didn't think it would last this long... but I'm leaving in 4 days and I'll have NO cell service and NO internet in Amazon Rainforest, so maybe that will spark some change. Happy

    My knee is doing better - I finally figured out what happened (because I did it again today!) My house is still in major disarray from the remodel project that just won't end, and I have my entire closet staged in the extra bedroom. It's like a game of twister whenever I go in there to find anything, and while doing all of my packing, I twisted my knee when I was bending and reaching around things. Fortunately, when I did it today, it was very mild, but I felt the pain, and I'm sure that's what happened to cause the initial injury. I feel pretty confident that it won't impact my trip, but I can't walk or do yoga right now. It makes me a little anxious when I can't exercise, but I'm sure I'll be able to get back to my routine when I return home.

    I will be thinking of you guys while I'm gone, and I'll look forward to checking in again when I get home. Take care and I'll try to post an interesting Amazon picture in my next update.

    Cheryl

  • going2beatthis
    going2beatthis Member Posts: 191
    edited April 2023

    Hi all,
    For those of you who were not on Wednesday’s Zoom Meeting, this week was full of answers to questions. FINALLY 👏

    After seeing my orthopedist last Friday and leaving with an RX for an MRI of my ankle, I was able to schedule an appt. for 7am Monday morning. Armed with a disc in hand to bring to my follow-up visit with him, I made a couple of shopping stops before going home for the 10:20 teleconference with my oncologist to go over the results of my PET/CT scan. Wouldn’t you know, her PA called at 10:15 to say the doctor had already responded that everything was ok and asked if I really still need to speak with her. Well, you know I said YES! She did take my call and answered all my questions. All stable, no uptake regarding mets, and not concerned about the tiny nodule in my lung only seen on CT and not on the PET. She mentioned that my cancer is very slowly growing and it might just be scar tissue. Will monitor it with next scan in November.

    Wednesday, I saw my orthopedist for my follow-up visit. So the pain and swelling in my leg is due to posterior tibial tendinosis, definitely not any cancer. He suggested trying a conservative approach and not surgery. Recommended a cam boot for walking or standing for a while. He also thought that acupuncture might be helpful and said to see him in 6 weeks. So off 🚘️my husband and I went to the medical supply store to find the right size boot. But, alas, no luck there. They tried to say I needed a boot that was too big of my foot. Placed a call to my doctor’s office, left a voice message as well as speaking with someone for the MA to call me, and waited to hear back. Also texted my acupuncturist to set up a visit for Friday morning.


    Thursday morning, tried to set up an appointment at the medical device company for a cam boot but was told I needed an RX from my doctor for that. Figured my best approach was to be fitted by someone who knew what they were doing and not just order it from Amazon. So, I put in another call to the orthopedist’s office. At 4 pm I had still not heard back, so tried a different extension to leave a message. After being on hold for a while, she came back and said the MA would call me later on. Also, I finally received a call from my pulmonologist about the nodule in my left lung lobe. Said he was not a betting man, but based on the shape and size, thinks it is not going to develop into anything serious. Since he has probably seen lots of these before, taking his advice to not give it any more thought.

    This morning, had a great session with my acupuncturist. Not only did he treat my leg with needles, he put 3 smelly patches with medicine on my leg and foot. Have to leave 1 of them on for 5 days, the others on for 2-3 days and see him for another treatment in a week. He said he can definitely solve the problem and suggested exercises and only wearing the boot if I was out walking. On the way home, stopped at the orthopedist’s office since 1 call where I had left a voice message and 3 calls where I had spoken with someone had not resulted in a call back. So, with a cam boot which I thought did not fit me, I asked to speak to the MA. He actually took me into an exam room, agreed that the medium was too big and fitted me with the right size boot. Wish I had known that they could have done that for me on Wednesday. Hopefully Medicare will cover the cost, but if not at least I have would I need.


    As the moderators say “Advocating for yourself paid off.” 👍


    Hope everyone has a great weekend. I will be celebrating a very productive week with my husband and sister. 🙃

  • illimae
    illimae Member Posts: 5,721

    Good news Fay 🎉

  • going2beatthis
    going2beatthis Member Posts: 191

    Thanks Mae

  • illimae
    illimae Member Posts: 5,721

    My treatment is back on Monday’s, so I was obviously absent today. Next Monday I have scans with my last quick appointment at 1pm (zoom time in Texas), I may pop in late, if I have time for an update. I wish everyone well and I’ll see you soon.

  • mojos
    mojos Member Posts: 41

    Missed you today but look forward to your popping in next Monday!

  • temerarious
    temerarious Member Posts: 23

    Hi everyone,

    Back from the Amazon Rainforest! The trip was fantastic, but not without challenges. I had such a wonderful time in the jungle - I saw amazing animals, and we had great weather. Unfortunately, I did get sick AGAIN the 2nd week, so that was a bit difficult. But the good news is that even with the illness, I was able to see Machu Picchu again, and I was also able to take my planned day tour & flight to see the Nazca lines. I must confess, I'm ready to be home for a while, and I'm not sure the two months I have before my next trip is enough. I finally started to feel better yesterday - I'm still slightly congested, but I was able to start back up with my walking and yoga. It's been a rough couple of months between the dog bite, the knee injury and two really bad cold/flu viruses, PLUS the very frustrating remodel (not to mention the travel). I'm making it a priority to focus on my self-care for the foreseeable future and trying to keep everything else in perspective.

    Start of Week 17 in my interim job, but there IS an end in sight (HURRAY!!). The new CIO has been identified, but I'm still in the role until his replacement for his current VP position is identified. My guess is that he will be fully onboard by the end of June, and I should be able to return back to our Zoom meeting in early July.

    Thinking of you all today, and hoping to see you soon!

    Cheryl

  • illimae
    illimae Member Posts: 5,721

    I missed today due to treatment but will see you all next Monday. Hope everyone is well 🙂

  • kbl
    kbl Member Posts: 2,963

    Cheryl, were your ears burning? I came in this forum today to see when the last time was you wrote. I knew you were away but didn’t know when you were returning. I’m glad you had a good time but so sorry you got sick again.

    Yayyy, can’t wait to see you again. I’m sure you’re excited they’ve finally chosen someone.

    Mae, I missed you today. Hope treatment went well.

    Kris

  • moderators
    moderators Posts: 8,570

    Oh good, Cheryl!!! What a long run! Glad you will be able to come back in the somewhat near future. @temerarious

    I'm also sorry to hear that you got sick, but glad to know that the trip was fantastic. :)

  • temerarious
    temerarious Member Posts: 23

    Hi everyone,

    I'm so sorry my update is late this week. I had a crazy weekend working remodel activity. The good news is that I am feeling so much better (and so is the cat!)

    It was so good to see you guys on the call last Monday. This is now the start of Week 19! I can't believe this 'interim' assignment has gone on so long, but hopefully it will be done by the end of June.

    I have a bone scan this Friday, and I will get the results on June 19th. I'll touch base again next week (and I'll do my best to post my update on Sunday!)

    Cheryl

  • going2beatthis
    going2beatthis Member Posts: 191

    Hi Cheryl,

    Glad to read that you and kitty are both feeling better and that your days as CIO are coming to an end.

    Let us know if you are going to do a presentation from your trip to the Amazon and Machu Pichu. We love living vicariously through them.

  • kbl
    kbl Member Posts: 2,963

    Hi, Cheryl!

    It was so good to see you. I’m happy you’re feeling better. Hopefully the end of June gets here quickly. Can’t wait to have you back.

    Kris

  • temerarious
    temerarious Member Posts: 23

    Hi everyone,

    Start of Week 20. The new CIO is on vacation for two weeks starting on Friday, so I'm back in the saddle again. All is going well, I'm just way too busy. I'm trying to the house finished before I leave again the 2nd week of July. My friend and her husband are going to stay in my house while I'm gone, and I'd really like to get the remodel finished before they get here (if that's humanly possible). Lots of medical appointments this month, and I'm trying to get packed for the next vacation. It's all good, but I'm looking forward to taking a break from it all.

    I have an appointment with my oncologist on Friday, and I will get the results of my bone scan and PET scan. I'll update you guys this weekend. The good news is we're all still feeling better here (me and the cats), but I'm kind of tired.

    I haven't had a chance to edit my Amazon pictures yet (for all of reasons listed above). It is on my list of things to do, though!

    Miss you guys, and I'll hope to join the meeting on July 3rd!

    Cheryl

  • kbl
    kbl Member Posts: 2,963

    Hi, Cheryl!

    You are very busy. Thank you for taking the time to update us. Have a great trip, and I hope we can start to see you real soon and that you get your remodel done.

    Hugs!

    Kris

  • moderators
    moderators Posts: 8,570

    Oh man, @temerarious! You've been doing so much for months. At this point I think we're all looking forward to you going on vacation! Beyond well-deserved at this point.

    Looking forward to seeing you/catching up if you're able to make it on July 3rd. :)

  • temerarious
    temerarious Member Posts: 23

    Hi everyone,

    Start of Week 21. It's almost been 5 months. In my wildest imagination, I never expected this interim job to last this long. But the end is in sight! One way or the other, I'm leaving on vacation the week of July 10 for 24 days. 😍

    I received the results of my PET scan and my bone scan on Friday. Unfortunately, the results are not yet clear. The PET scan identified a spot on my liver that cannot be diagnosed without an additional test. However, my oncologist said the spot is very small, and there are several possible causes. She has ordered an MRI of my liver to get additional information, but the earliest available date for the scan is not until July 7th. My oncologist told me she was not worried, and she is hopeful the MRI will rule out cancer progression. She is not changing anything regarding my treatment at this time. As all of you know too well, the uncertainty can be very upsetting. I'm doing my best to not get attached to any particular outcome and not worry about the future. (But I'm certainly not perfect at that.) I am so fortunate to be as healthy as I am with this diagnosis, and I'm going to use this situation as an opportunity to practice staying in the moment and go forward with the assumption that all is well until I find out that it isn't.

    I haven't checked in with my self-care in a couple of weeks. I've been doing well with my walking routine, but I haven't made as much time for yoga. I'm making the commitment this week to focus on my yoga practice and make that a priority. I have made enormous progress on the remodel, however. (HURRAY!!!) All of the major items are completed EXCEPT for the installation of my closet doors and the repainting. Those items are going to have to wait until I get home in August. I put everything back in the closet on Saturday (so I now have an extra bedroom again 😁), and I cleaned out my garage yesterday! (HUGE JOB - thank God I'm feeling healthy right now!) My house is very close to being ready for my friends to stay while I'm on my trip. Now, all I have to do is pack!

    I miss seeing all of you, and I am going to do my best to join the meeting on July 3rd. Hope to see you then!

    Cheryl

  • mojos
    mojos Member Posts: 41

    Cheryl,

    You have amazing energy! I look forward to seeing you on a more regular basis! Enjoy your upcoming trip.

  • kbl
    kbl Member Posts: 2,963

    I’m with Mojos. You do have great energy, and I’m so glad your house is almost complete. When you get back from your trip, you can finally let out a sigh that things are coming together and you can get back to your regular job.

    I hate when there aren’t definitive answers from a test, but I’ll be thinking of you on July 7th for your MRI, and I hope we get to see you on the 3rd.

    Kris

  • illimae
    illimae Member Posts: 5,721

    whoops, too much margarita during zoom, sorry if I offended anyone with the Scottish comments.

  • seeq
    seeq Member Posts: 1,167

    Mae, I have never been offended by anything you've said,

  • kbl
    kbl Member Posts: 2,963

    Mae, I love your sense of humor. I miss when you’re not there.

  • moderators
    moderators Posts: 8,570

    We adore your humor, Illimae!

  • temerarious
    temerarious Member Posts: 23

    Hi everyone -

    Start of Week 22. First of all, I'm so bummed I wasn't at the last meeting to hear the Scottish comments!! 😉

    I have to agree with Kris, Mae, I love your sense of humor. So even thought I missed the specifics, I'm sure I would not have been offended.

    Cedars had a cancellation last week, so I was able to get in for the follow-up MRI of my liver on Wednesday. I still do not have results, and although I'm REALLY practicing my goal of staying in the moment and not catastrophizing my thoughts, it is tough. I have quite a bit of anxiety, but it's been a mixed blessing to be so busy and have a deadline for getting everything done before I leave on vacation. I tend to go into the 'Freeze' mode (vs. 'Fight or Flight') when I'm emotionally stressed, and the fixed timeline doesn't really give me that option. I've been able to keep moving and make progress on all of my house preparations and packing. I've been leaning on my friends to support me, and I'm grateful that I feel physically good enough to accomplish everything.

    My new boss is back from vacation on Wednesday, however, they have not yet announced his backfill. I'm planning on calling into the meeting on Monday, July 3rd, regardless of his status. One way or the other, I'll be finished with this acting role when I leave on vacation the second week of July. They're going to have to figure it out by then.

    I'll see you guys next week.

    Cheryl