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

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

Lone, it’s the right place! You found us. Hope the move to Denmark goes smoothly for your son.

Catherine

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!

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!

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.

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.

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!!!

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.

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.

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!

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

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

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.

Catherine - the quilts are fabulous! you must have a lot of patience :-)