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Zoom Meet-Up Bonded by Breast Cancer: Place to Keep Chatting

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  • katg
    katg Member Posts: 206
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    Thank you jakeinva….. I just got my extra wide shoes and they fit. Amazing to just go in, buy a great pair and they fit. I have picked two more pairs. Sometimes we treat ourselves well because we can! "Retail therapy" is double great when you need the items.

    California is about 105 degrees where i am. I hope all of you enjoy the labor-day weekend!!

  • moderators
    moderators Posts: 7,911
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    Hi guys,

    Not sure if any of you have been impacted by this, but figured this would be a good spot in case any of you have!

    Warmly,
    The Mods

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    Hi Ladies! I’m feeling much better today. The sore throat is mostly gone but the croupy cough persists.
    I got called to a virtual meeting today with Erica (my friend who recruited me to help her build the Texas branch of the firm, now Director of Operations) and Julia (“Resources”) to discuss the new vision for me. I’m being asked to move into the position of senior project manager for the express purpose of mentoring new project managers (3) and new teams built on the three of them. It’s a transition from being the Dallas PM on two projects of my own and helping Erica with Dallas Principal duties she doesn’t have time for…to mentoring/managing 2 almost ready for prime time PMs and 1 not so ready but highly motivated PM and their teams doing multiple projects each and preparing to step into the actual role of Dallas Principal as soon as we can hire a new Dallas PM to “replace me”. They called it “microwaving” the mentees.

    My friend who listened to my fears of failure at the challenge said “You had cancer! That was scary. This isn’t scary. This is you doing what you’re good at doing.” “What’s the worst that can happen? It can’t kill you!”

    Who else worries what if I don’t do well? What if I fail? What if I can’t do this? What if the cancer comes back and I can’t live up to their expectations?

  • katg
    katg Member Posts: 206
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    I miss seeing all of you. I wish more would post. I have been unable to get to meetings because I had work meetings. Advocate. I finally called for the third time for a hematology doctor appointment, and I got it!! I got the right appointment gal on the phone who got me an appointment with a Dr. who specializes in Leukemia!! I may have posted my Mom had chronic leukemia, so white cells dropping unnerves me. Other blood components are off too. I just know I am not a doctor and i have always had healthy blood. I was a platelet donor for 25 years. Nooooooooooooooooo!

    Next Wednesday the 27 I will get to hear the possibilities. My older sister said since i was done with treatment she thought I was all good. Really? Did she hear me when i said my blood clot is not gone and Plavix is still something I am on. A compression sock? Sister, no, it is all not wrapped up in a tidy bow. I do go to work and live life. We get choices, we always have a choice. Mine is to keep living and let others know if something is not right. Today it is my blood.

  • jakeinva
    jakeinva Member Posts: 17
    edited October 2023
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    Very, very sorry to hear the zoom calls are going to be spread out due to lack of funding. Hard to imagine getting through the "after" without these wonderful, supportive "bosom buddies" LITERALLY! - this is Johnna aka jakein va.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    It’s going to be rough without our weekly group meeting. I really rely on the emotional support and encouragement we give each other. I wish we could find a way to convince them that we get so much more out of the sessions than anything else.

    😪

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    My one year anniversary of completing radiation is in a couple of weeks. Celebrating with my rescheduled Ed Sheeran concert. I’m so excited to be at the one year mark. But I can’t believe it has only been one year. It seems like it has been a very long year.
    Hoping everyone is doing well.

  • moderators
    moderators Posts: 7,911
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    so great to see you all here!! xo

  • katg
    katg Member Posts: 206
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    One year day. Great news. Ed Sheeran's concert. I have heard he is wonderful in concert.

    Gals, my sister had a complete hysterectomy and says things like they got it all. Her fantasy thinking is so frustrating to me and my other sister. I am powerless over how she looks at her cancer. Her stage? She says nothing. My younger sister reminded me that the older sister called me first. She had not wanted to "devastate" the younger sister. The younger sister came to stay with me for 9 days after my 1st surgery. I took care of myself after the next 2. This older sister refused the vaccine. She could never visit me through any of my active treatment. She lives 10 miles from me.

    My older sister is still in the hospital. She messaged me that she will be glad not to have the tubes when she leaves maybe today. Really? Tubes removed after 4 days. Is she paying attention to the draining? My sister's husband messaged my younger sister on her surgery day. Seems the cancer had spread some. To where? All margins are clear, so to my sister thinks it is gone. Is hers a stage a 3?

    Growing up, this sister sugar coated most things. Miss positive. She married and has the same husband for possibly close to 40 years. He has been there with her every day. To all of you with a supportive spouse. Love them extra. I imagine my brother-in-law is a bit more scared than his wife. To them, I hope the truth exists between these two. They have a son and daughter I hope are allowed to hear the truth.

    Cancer. Some day I just forget i had it.

  • jakeinva
    jakeinva Member Posts: 17
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    So sorry there is so MUCH with the three of you. Wish that it was more bonding, but you know how it is and can still see the humor (despite it) in all things. My three sisters and I were raised to keep things private concerning health and finances and they are respecting that for me - I have no idea if they are frustrated but kinda guess they are as I have been rather insistent in that regard. I'd be happiest if no one knew but of course my husband is the opposite. . . . If I had children, I'd probably feel differently. Anyway, hang in there Katg Kathleen! Johna aka JakeinVA

  • katg
    katg Member Posts: 206
    edited October 2023
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    Johna, Thank you for commenting.

    Finally, I had gotten my sister to answer the phone and she did not have any tubes. A 12-inch scar from where the surgery happened. I had called the hospital and found she was released last week, so i called. I had sent a text to the younger sister, but it went to the older. OOPS. What it was about was the tubes i thought the sister had and what stage? She answered that text. Stage 2 ovarian and the complete hysterectomy and removal of the spleen. My younger sister and i went online again to check the inside body. Where is the spleen? The sister had had "tummy" type problems for years. She said Dr. Lee got it all in this surgery. Seven hours? Because i seldom get the details, that is what her husband told my sister. The husband had also said the cancer spread some. Interesting, my sister is 2 years older than me and besides having 2 children in the hospital, she never had surgery. Fear? Who knew? The length of the surgery was to get clear margins and remove all the visible cancer. Dr. Lee focuses on helping before it gets bad. Preventive. Curative.

    I text my sister every 2 days to see how she is doing. The younger sister and I almost talk daily. That younger sister calls the older. I will say that before my mom died in 2016, my older sister rarely talked to the younger. A series of travels and today they do talk.

    Is my older sister still operating as the older and wiser? Keep in mind, when i had my 1st side mastectomy, she did not want to hear about it. Acceptance to we are who we are.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    Sisters…a relationship that was once so simple but became so complicated with age. My parents want us to be close like we were as kids, but we aren’t the same people we were then. It’s complicated to say the least and I don’t know how it’s possible to rebuild with the one who told me I couldn’t be around her during chemo because I “contaminated” everything I touched and it was dangerous for her. She would never explain why and said I was invading her privacy by asking for an explanation.
    Thankfully the other one is more reasonable but we’ve had our issues over the years. She is disappointed that I wasn’t more involved in being an aunt. I couldn’t have children so my life isn’t built around them. I’m a professional career woman. Not a lot in common with a stay at home mom of 4…but she cares enough to try to relate to me and I love her kids in my way. We try.

    There’s the family you’re born to and the family you choose. Sometimes they are the same people and sometimes they aren’t. I hope you (Kathleen) get to resolve some of the issues with yours.

  • katg
    katg Member Posts: 206
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    I plan to talk with my older sister once her next appointed with the MO happens this next week. She tells me little, as 2 weeks would be Friday. Originally, she would have 3 more rounds of chemo. With the genetic test, that would likely change. I am powerless and i cannot see how she views life. The younger sister? I will be visiting her at Christmas. I have never been away from home at Christmas. This year it is right.

    I am so happy to have read in these pages to contact my doctor. After the webinar today, i realized i do not have a care plan.

    I emailed my 1st Doctor at COH, my breast surgeon before work. She is now at Cedars and was there when I had my right side removed. She did both sides. Well I mentioned I had talked to my plastics Doctor and he suggested I stay with my medical oncologist who is also at Cedars. He said she was with you; it takes her little time to review and know you. She knows your case.

    I told this to my breast surgeon. Also, that my sister who never wanted to be tested has stage 2 ovarian. Dr P asked me the last time I had met with a medical oncologist. I told her i only met with the NP who I love but who is on pregnancy leave since August. I have never met the oncologist I was assigned. I have Brca2 and Her2+. I had 13 rounds of chemo and had to stop. I year of Lynparza and herceptin/perjeta for 18 rounds. I was thinking, is this it? Am i recovered?

    Dr. P says i need to see her every 6 months for 3 years. I have not seen her since my surgery 10 months ago.

    I believe my care plan has begun.

  • jakeinva
    jakeinva Member Posts: 17
    edited October 2023
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    anybody know when the Mon/Fri Bonded zooms are scheduled? thought there was going to be one today. . . . thanks it's Johnna aka Jakein VA

  • katg
    katg Member Posts: 206
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    I thought so too. I logged in and thought i missed it. I sent an email to Melissa.

    I want to share something on my sister. My younger sister said Last night that she talked to our sister. I had chatted to both sisters to ask our older sister how she was doing and if she went to the doctor yet. She did not reply. She did though, get on the phone and talk to our younger sister as i said. She told her that before she was released from the hospital, they gave her some shots. The flu? I have no idea, but it seems those have kept her sick for a few weeks. She went to the urgent care it seems at the COH and they said nothing shows to be wrong. So she told our sister she will ask the medical oncologist she may do only 1 chemo. No genetic test, so no focus on what a genetic mutation could be and treatments she may get. My prayer is she meets with Dr. Wang. She listens. She tells him is there anything else she might take? Maybe Herceptin/perjeta or Lynparza like i had.

    It is a big lesson in powerlessness. She told my sister that the doctor said the cancer is gone. She had said the same thing to me when I was hospitalized for pancyotopenia. She said they were killing me. After they removed my tumor and breast, she said they got it. Why are you doing anything else. BRCA cells are in all of us. Three out of 5 of her siblings carry the mutated version. That means when cells replicate naturally the mutation may occur again, somewhere else. Her husband told my sister on surgery day that she was stage 2 and it had spread a bit. The are parab pills for ovarian cancer.

    That would have been my update in the meeting.

    I also got more defined results of my bone marrow biopsy. No sign of leukemia and unremarkable in 2 results. No blasts or abnormal cells. Officially I hear from the Doctor on the 27th. If he sees anything i might need to do focus on or test on. I know i will be my advocate. I attended the webinar Wednesday and thought Care Plan? I finally message my breast surgeon, and she said yes, I am to see her every 6 months for 3 years.

    She also said seeing my original Medical Oncologist who is also know at Cedars-S is a very good idea.

  • jakeinva
    jakeinva Member Posts: 17
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    Katg - I missed most of the call today but glad to hear things are looking good on the biopsy - hope the Doc is in sync. No idea what to say about your sisters, but hugs, and know you'll be there when they finally figure out they need you.

    I cannot figure out the zoom schedule - it doesn't seem to match what's in the email of upcoming meetings. We had a meeting today and it looks like there will be one on Monday 10/30 - assuming the next friday one is 11/10 - will try and not schedule something that day 😊, mondays are tough for me . . . hang in there!

  • katg
    katg Member Posts: 206
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    jakeinva,

    Thank you for posting. I think your dates are right. Lilli is hourly, so she will not be doing Fridays. Melissa is salaried, so we get her back. As to my sister, I see her Sunday for crafting. She asked me about my visit and told me nothing about hers. I told her i would talk with her Sunday.

    Well, down a path i go. My mom also donated the TP53 mutation. I was told 2 years ago that mutation is not a problem. My bone marrow biopsy unveiled a start of a gene mutation just showing a tiny sign. Forgot the name. It did show as unremarkable. But…….combined with the TP53, if it continues to grow, I will end up with leukemia.

    My Dr. and the hematology drs talked about my case. Watch my blood and test every 2-3 months. Get me on the registry for a donor. My family carries Brca2. No donating by them. No telling when my mutation will advance and how fast. I will end up with a bone marrow transplant. 2 weeks in the hospital. Chemo to kill my cells.

    A positive is COH is a leader in transplants.

  • jakeinva
    jakeinva Member Posts: 17
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    katg - sorry i missed your note above 10/28. Hearts and hugs for bearing so much stress. We both know humor and a great attitude can help. but . . . . My thoughts are with you (I know that's lame, but that's what I got). 🤗🤗🤗 Glad I got to see you on the Monday zoom. Johnna

  • katg
    katg Member Posts: 206
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    Johnna,

    Thank you for posting. I loved your halloween hat. You and the others made me smile as only those walking our road know how it feels.

  • katg
    katg Member Posts: 206
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    A question if anyone has heard of or read the book by Chris Wark. Title, Chris beat cancer.

    My sister who had ovarian cancer wanted me to read this book. As i read the info the author put out about himself, i made the decision to read a bit at a time. A chapter or less, put post it's on the items on the page i wanted to revisit. As i was reading a middle chapter i started on, I heard my sister. She is so much on the side that she does not do vaccinations or drugs. That the flu shot and some other drugs they gave her after her surgery made her sick for weeks. Alternatives. Eating the foods that beat cancer. Turning the description around that says cancer is killing us.

    I am currently trying to figure out how to open the fed ex envelope i received Friday night. The front gives a great description of how to reaffix the return label. What???? Where is the tear across part of the envelope.

    I am going in the portal to ask them this question. I do not get it. I need to get six i believes swabs in my mouth to send back. I was told they would go out last Monday, but i got them Friday. I had an event Saturday all day and a 75th party for a friend i attended for a bit at night. I met 5 of her adult kids which was nice and lot los friends. I did though, ask one friend how she was doing. She has been a breast, pancreatic cancer survivor, who got more doses of chemo then I did. Way more. No evidence of disease as of July. Today she says they found 3 nodules in her lungs. Crap. I told her that sucks. I also said lets keep in touch. i have new results to. This flippin journey is not over for either of us. I will keep you on my prayer list. Double.

    We do not have many in the Friday or Monday who come to these boards. It is Veterans day Friday, so not sure if that is the next day.

    Great day all

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    Hi Katg,

    Sorry to hear about the continued sister saga and ongoing threats of disease mutation/progression. Sisters…what was once so simple a relationship, how I wish it could be that simple again. I haven’t really spoken to my youngest sister in over a year. I’ve been able to connect with the middle sister, but it’s hard because the two of them are closer. It’s the loss I didn’t expect to come from the cancer experience.

    I hope you have better luck. I also hope the leukemia threat doesn’t manifest. That would just suck!

    The discussion in group today brought me back to the thinking that we are supposed to be reducing our stress levels and living life as normal again. But I have been working with a great team on a tough project and one guy is a really pain in the you-know-what. I really want to sit him down and ask him what his deal is. Why is he hell bent on making everyone miserable instead of trying to contribute to the success of the project. Life is too short to be that bitter and vindictive. Why?
    I actually don’t want to get out of bed in the morning because I don’t want to deal with him. But the rest of the team needs me. Stress…I know it hurts me but what do I do about it?

    Ugh!

  • katg
    katg Member Posts: 206
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    kathrynw1thasea..

    I have nudges of that feeling with the boss at my work. Life is to short to be that bitter and vindictive. Why?

    I did wonder if the rest of the team is supportive. Having had cancer, I look at my supervisor now and say God keep my at my best. Do not react!!!

    I have been working so much, I know i need to come back and post and read here.

    And sisters, I wish it was simple. For today, it is time to sleep……

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    Just have to share something that made me laugh.

    AARP members get priority access to Rolling Stones ticket sales!!!

  • katg
    katg Member Posts: 206
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    I miss the weekly meetings. I was off today, but Friday may be too busy to join from work. Now I spend time now and then on new topics. Lots going on, so much to read.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    Some days are just so hard. My heart is broken.

    An amazing young man just one month shy of his 30th birthday has lost his battle with melanoma. Half my age and twice as wise. He went through surgery, immunotherapy and even radiation treatments to the brain and was declared free of active disease just a few weeks ago but was having symptoms of swelling on/of the brain. Puffy and fatigued from months of steroids but full of life, faith and determination, on November 21st, he and his best friend broadcast their weekly podcast of intensely intelligent youthful insights on a multitude of topics affecting today’s world. On the 26th he was gone.

    Only 2 weeks prior, he had been on stage at his church sharing his story and the good news from his last PET scan. The message he left us with was that g-d only gives the hardest challenges to the strongest people. Have faith and g-d will be with you. This man thought always of others first and how to make a positive impact on the world. His faith gave him a strength I will never fully understand. He helped me face my treatment with grace and I tried to be a source of unconditional support to him. He was truly one of the rarest of human beings I’ve ever been blessed to know. Love walked with him and all who knew him were touched by that love.

    John, I can’t believe you are gone dear friend. How do I make sense of this? Is your other philosophy the true message you want us to remember? Live each day with purpose and love. Do the things that bring you joy and help meet your goals…your purpose in life. Life is a gift no matter how hard or short. Face it with grace, trust and faith.

    John, I’m trying. I want to make you proud. I want you to know that I heard you and I want to honor your spirit by living with your words in my heart. But I’m angry. Why did g-d take you so soon after healing you and promising “you were done”? Why? What was the plan? We still need you in this world. To make sense of it all. Oh John, dear brave kind and gentle soul…you are loved and you are missed.

    I don’t know how to put the pieces of my broken heart together again. but in honor of you and our friendship I will try to live as you lived…with kindness, love, intention, and yes, faith.

    I will see you again!

    Catherine

  • moderators
    moderators Posts: 7,911
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    Catherine, your post about the loss of your dear friend John is deeply moving. We are so sorry for your loss. Please accept our sincere condolences.

    Warmly,

    The Mods

  • katg
    katg Member Posts: 206
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    Catherine,

    Thank you for posting. What you wrote was beautifully written. I had a conversation with a friend yesterday and a nurse friend. I did not know she had breast cancer in 2020. She feels they got it it all out of her. Estrogen driven she said. Our nurse friend says cancer knows no bounds. Microscopic cells may exist. What you pass from may be a side effect.

    She worked in the colonoscopy department for decades.

    I love the message of what you will carry forward about his life intentions. He sounds like a very interesting nearly 30 yea old. I expect his partner on the podcast needs our prayers too. Love, faith and intention. Act in those ways you want from others. Beautifully written. Prayers to all in this circle of your friend.

  • katg
    katg Member Posts: 206
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    I am so disappointed that we do not meet weekly anymore. I love hearing updates and holiday plans. Sadly, few come on hear to update. So, I will share that i do have an update. My blood numbers are steady, platelets low, but no sign my TP35…I forgot the number has changed. Also, it seems there may be a few matches for me on the registry that need to be checked. A few. My doctor said to stay healthy and eat well. My sister wanted me to ask if any vitamins or food would help my platelets. He said no. I still wanted to say, "are you sure"? How can this be? A bone marrow cell replacement. Remove and kill my current cells that are defective and accept new ones. Just for today, I am doing as the doctor said which is to enjoy the holiday. Next blood test in Feb.

  • kathrynw1thasea
    kathrynw1thasea Member Posts: 89
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    Kathleen,

    I too wish more people would come to this thread. I miss the weekly chats like most of us in group. I’m tempted to suggest that we set up our own Zoom meeting in the off weeks.

    I’ve been spending the holiday with my parents in Tyler. My sisters are with their kids in Kansas and Allen(TX). The one in Allen got all bent out of shape because of a miscommunication by my parents about me coming to Tyler instead of them driving to Allen. Well, it’s more complicated than that, but let’s just say it is her drama continuing. I’ve had a pleasant visit with my parents and time matters at their age and our conditions.


    I just spent the last hour reading the insert for Verzenio’s clinical trials and thoroughly upset myself. It sounds like I should expect a recurrence in the next 2-3 years without any possibility of escape from it. My rational mind tells me that isn’t the case, but my emotional brain says “you know what you just read”. So it’s a bit of a pity party going on right now.

    Do you definitely have to get a marrow transplant? Can people get tested for matching if they aren’t near you? I don’t suppose a fellow cancer patient can be a donor? I hope a good donor match can be found.


    My doctor tells me the same thing about supplements. I’m only allowed to take vitamin D. My red and white blood cell counts are low right now, but not “too low” she says. I’m guessing that’s getting close to the neutropenia state. I’ve gotten viruses both times I ventured out into crowds without a mask. I’ll be wearing one on future outings.

    I guess we adapt as we must! I hope to see you again in group soon. You always make me laugh!
    Hugs and best wishes to you!

    Catherine

  • loneviking
    loneviking Member Posts: 1
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    Hey, I am not sure that I am at the right place for the Bonded by Breastcancer group? Sorry I missed it tonight, I had a deadline I needed to finish tonight. Lone