Zoom Meet-Up Bonded by Breast Cancer: Place to Keep Chatting
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Oh my. I forget to log in here!!! Catherine, thank you for commenting. Also, for joining in now that the meetings are every week.
I hope you had a good time with the family over the Holidays! I went to visit my sister in western NY. We visited our uncle in New Jersey. Our dads remaining sibling
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I do not know why my other post did not post, buy i do wish more would log in. Seeing family is tough. I heard you say you may play the cancer card at work and I get it. Sisters. My one with cancer believes she is going to be asked to take Lynparza. She may say no. She looks for why not. Two related people she knows that she said have the SAME cancer in the breast. Really? One had the treatments and the other did not. Both have lived the same length.
She would rather take no drugs. Suzanne summers got 25 extra years!!My sister is going to eat right. i believe if we look for the right answer we will find the one we want. She has an oncologist at City of Hope like me. Hers she said does not tell her anything. He says they are doing this treatment because it is what they do? My sister did not get the genetic test. If she eats right. I just know the genetic test did not exist a few decades ago.Catherine, as to the gene pool. I did go into the national registry I believe. They may have a few matches. If my blood numbers are steady, I may be safe for a while. I would hope my numbers get better.
Just for today, I am glad to have hair long enough to put in curlers!!!!
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Lone, it’s the right place! You found us. Hope the move to Denmark goes smoothly for your son.
Catherine
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Hi Y’all!
I’m so glad to have reduced my stress level by getting myself off the project with the jerk! I will be spending Saturday with the Sit and Sew group at my favorite quilt store. I have not gone since October and I’m looking forward to getting back to the things that make me happy. I’m even getting off one of my blood pressure pills as the result of my PCP visit today. What a change it is making for me.
I also went back to wrapping my lymphedema hand and arm with gauze and bandages instead of the compression glove that makes it too hard to type. It’s so much more flexible. It looks like you have a very weird injury and people look at you funny but the swelling and pain are more successfully controlled.
I’m getting better at chair yoga. Tonight my meditation is listening to the purring cat on Calm and petting Liten while she snuggles on my side. Ahhhh…cats!
Hope everyone has a fabulous weekend and see you Monday!
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Here we are!! Sometimes i spend too much time on the Mayo connect site. This site is the one who helped me from late 2021 till 2024. All of the women in the in -treatment and after. It was said today that you cannot understand breast cancer until you have had it. Whatever was done to your breasts was caused by cancer. The treatment for it, the side effects and the emotional roller coaster is different for all of us. Feelings though, shared experiences and the day to day are things we experience together. Just from today's Monday meeting, I hope to hear from the 2am women who seem to be up at that time. I love to hear the honesty we share. Family and friends may want us to feel better by saying things for comfort, but ultimately having someone or more to talk to that hears us is important for our well-being.
I would add this, in early May I was told I did not drink enough water and my kidneys …..well the Doctor said I am killing my kidneys!!!! Yikes. So, i do not disappoint him or ruin my kidneys, if I am up at 2am, it is to head to the bathroom! Lastly, in the hospital for my BMT, one side effect got me bad. Fatigue was big but throwing up came after Melphalan Chemo and the two other doses I got for a research test I am in. Vomiting during the doctors' rounds at 8:00am in their presence, on the 2nd day got me a 72hr pill that stopped the rotten side effect. Most remaining visits with the team, I was alert and aware.
Tell the truth and if you can't I hope you have results like i did. Two days in front of them and RN's who confirmed got me the pill that is only given when things get rough.
Lets keep bc.org going by posting!
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@katg, It's wonderful to hear how much support you've received here! Thanks for bringing this thread back to life, and for being such an important part of our community! 🤗
The Mods
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I love hearing from you all. Kathleen, you are one of my favorites. I look forward to your energy and humor!
we have so many wonderful ladies in our group. I’ve come to think of you all as friends and I’ve had the great pleasure of hanging out with some of you. We really are “bonded”. I value that more that I could have ever predicted.
Saibba’s words really stuck with me “Me, Myself, and I”. Me can cry and panic and be weak, Myself can be angry and irrational, while I gets to be the rational problem solving voice that brings us back to some semblance of normalcy. I am so inspired by her words!
I look forward to our weekly gatherings!0 -
I agree! I love the "me, myself, and I". Time to use it!
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Happy Friday y’all!
Here’s hoping everyone has a wonderful weekend. I’m looking forward to some time quilting and not working on architecture.
I messed up on my timing of the Verzenio doses again this week and have paid the consequences. It’s amazing to me that the body can be that sensitive, but I guess it’s just simple blood chemistry.I’ll be interested in hearing Princess Kate’s cancer update. Any guesses what type she has? I’m guessing uterine.
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Hi All,,
I think Princess Kate does have something like uterine. My sister had stomach problems for a very long time, and in the end, she finally got an MRI and found cancer in her uterus. My sister finally let me know in a text that she gets a check -up every 3 months. She spoke of needing to be careful to not be around people for at least 6 months. Really? She went to visit her daughter in Indiana through her chemo and I think is planning to go in July. She has been at my house but has not come to see me even once in 3 months.
Quilting. You may have shown us what you have done, but please do again. I love creativity!
Blood chemistry. Verzenio is a drug i never got. Currently I have 5 I take twice a day. All to stay healthy!!!
I did find out that for the research study I was in for GVHD, I had two doses of Cytoxan. Its real name is long.
I also had another one From April 2-5th. Clearing out my bone marrow.
I am back at work, but this next week we work 4 10's. I have my Friday regular checkup. I hope to see you all.
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Hi All,
I did not think there was a meeting today.
I received a call from the transplant department to check on me! It was a nice surprise. I know they follow-up and ask about meds and how we might be doing. She can see my report and she knew I was not having Graft-Vs Host Disease symptoms. I asked if I was expected to have these side effects. She said no, there are people who do not have any. I may be one of those. I mentioned that getting here with only MDS and not leukemia, I had a better chance to recover without those side effects. She said absolutely. It was also suggested that i stop by and see them with any questions or just to talk. Authenticity. That was i felt from her. I was on a floor with 36 others when I had my transplant. Multiply that by month. Think of all the people who are being monitored for a minimum of 2 years. Research hospitals live on statistics, research. She also told me my results just could be because a drug to stop gvhd is now given from day 5 after transplant to Day 100. It used to only be given to patients that had gvhd. Then I am on the research pill that was matched with the pill I take 5-100 days. Two that are to prevent my body from rejection. I really feel good. On July 18th I have my 100-day bone marrow biopsy. The best result from this, my 4th BMB is the hope that the fellow who donated his bone marrow is still with me as close to 100% as possible.
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Kathleen,
That’s such good news! It’s amazing how far we’ve come with the drugs to prevent side effects.
I am so disappointed that our group got canceled tonight. I hope it’s nothing serious with Lili.
I don’t really have anything new to report except that I will be going to another quilting retreat with the other Australian designer I adore. I’ll post some photos of my work in a separate post.Stay strong…as if you wouldn’t 😉😘
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I forget to come to this site!!!! I am day 88 past transplant. I remember being in a bc .org 10am meeting sharing i had a new diagnosis. Crazy. September of 2023 and transplant done April 9th.
I think Lili has another job giving her more hours. I did remember something hearing something about Gildas club. I looked and saw Gildas club grew into a cancer community. I am not sure who else offers the zoom meetings. I suppose we are blessed for every other week.
I love the idea of a quilting retreat. Pictures please!!!
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Kathleen,
You’re almost through the 100 days! That has to feel good. I’m looking forward to the end of my Verzenio and Zometa treatments in November. October is going to be a busy month with my class reunion and the quilting retreat. I’m disappointed to find out that the designer won’t be spending the night with us but she will be staying for dinner both days. I’ll definitely post photos.
I’m having one of those late night anxiety attacks you often mention. It seems like I am developing a lot of freckles lately. During chemo I had a rash and more freckles but my skin seemed to go back to normal a few months after completing chemo. Here I am 1.5 years post chemo (on Verzenio and letrozole) developing more freckles again. Of course with the strong Irish heritage, pink skin with freckles is pretty standard but I’m a little less pink and a lot more spotty lately. So I’ll be going to the Verzenio topic group later tonight and hope for some wisdom.Hope to see you in the Monday group again soon!
Catherine
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Jen Kingwell is the designer at our October quilting retreat and this is one of her patterns I’m doing in a Block of the Month program. These colors are very unusual for her. It’s a fabric line she designed. Usually her patterns rely on much more color variation or “scrappy” character by mixing fabrics from many different designers.
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Kathleen, here’s another Block of the Month I’m doing called Field of Flowers by a different artist and a few of my partially finished blocks.
the lighting makes them less vibrant
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Those are beautiful quilts! I bet you have a lot of fun at the re-treat talking with other happy quilters. The busy one is probably my favorite. I have made squares for 2 quilts a friend made for friends. Both were themed and many women sent in squares.
I hope your remaining days on meds cause no problems. Freckles have been my life. I do not expect the ones I have to go away, but a bone marrow transplant has all sorts of effects for the recipient. I hope you are pink, rosy and freckle filled.
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hi all! Finally remembered to log on and comment. On my phone so won’t type much for this post but will post again soon from the computer!
I’ve missed chatting with you all, especially now that they’ve gone to every other week.
Talk soon,
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Hope everyone is doing well. It's been awhile since I've caught a meeting. The every other week gets me all messed up. I miss seeing everyone and getting updates. Hope to make this Fridays meeting!
I'm really excited about meeting Epiphany for lunch this Saturday. She's visiting Las Vegas. I'll post a picture!
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Where is our picture!!!
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Hi, all! How's everyone doing? I have a CT scan today- I was having symptoms of a kidney stone a few weeks ago and I just now was able to get in for a scan. My gynecologist ordered it because of my cancer history- she doesn't think it's anything but a stone, but wanted to order the scan just in case. I passed the stone already but am keeping the appointment. My oncologist never ordered at PET scan for me, so I don't have any type of scan for monitoring me- it's just the Natera bloodwork every six months, and then follow up appointments with oncologist and the PA with my surgical oncologist team.
Not gonna lie, I'm a little nervous. I've been using alcohol as a coping mechanism since being done with active treatment, and the past couple of months I've been drinking more than ever. I'm trying to find a therapist but it's been unsuccessful so far so I've been using gin as my therapy- not good at all.
Anyway- I'll keep you posted on the scan results- I hope everything comes out ok. See you guys Friday <3
-Lisa
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I there. Thank you for posting.
It has been over a week, so how did things go? I like tests and blood tests. To see things inside of me that may need further looks. As to drinking more, I hope you switched to some water or carbonated something. If you do not have a drinking problem, it needs to be nipped in the bud. Your body needs attention, and you need some peace. Alcohol is seldom a good solution.
I pray you are better today.
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Hope everyone's week is going well! I shared at Monday's meet up that I had completed the mammogram, ultrasound, and MRI planned for me for 6 months after completion of radiation and that I was just waiting on the result of a biopsy. The doctor called me this morning to tell me the good news that the result was negative/normal!
-Karen
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Karen, WHAT GREAT NEWS!!! So glad to hear that.
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Hey all!
Does anyone else get hot flashes and night sweats worse on certain days of the month? I started noticing about 5 months ago that my hot flashes and night sweats are horrible from the 25-30 of the month. I started tracking last month and sure enough, it happened again this month. Definitely talking to the Onco NP about it at my follow up appointment next week.
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There are a few of us from the Bonded Zoom meetings who have been meeting up. We thought it would be fun to share some pictures here!
Jodi/Catherine in Vegas
Jodi/Epiphany in Vegas
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@collijr - That's wonderful! We're so happy to see that some of you have been able to connect in person. Thanks for taking the community beyond virtual meetups! 👩❤️💋👩
The Mods
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great pics! Jodi - glad you mentioned this - I had forgotten about this page - lots to catch up on!
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Catherine - the quilts are fabulous! you must have a lot of patience :-)
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I forgot to check my email to log into zoom.
I love seeing you meet others from our group Jodi. It is one way that Vegas pays. We have CSEA conferences there, so maybe someday. Till then, lets keep this thread going and share the fun you have in a day.
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