IBC lounge: roll call, support and just a good place to hang out
Comments
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HI Blue: So happy to hear your bx was negative. My sisters next chemo is June 3.I gave her some suggestions that I got from all of you guys of course
I think she will have a less eventful session with the pre meds.I will let you know and Thank you for asking.
Lori: I am happy to hear from you.You are a great help with your extensive knowledge. I will relay the advice to my sister and keep updating. Hope your scans and tests are good results.
Flo: Hope you are doing well. Are you in Canada?
We are from Vancouver.
Stay strong and healthy.
You are all SuperWomen and Men.
Kindly
Shela
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It's been a while since we checked in and said hi. I hope everyone's doing OK, despite the world being on fire right now. SB
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Hi SB, This is Shela ( I PM'd) you a while back)
Thanks for checking in. My sister has only 2 chemo session left ! She is getting a pet scan Jul 31st and a tentative surgery date of Aug 11th.
Hope she gets great " unlit" pet scan.
Take care,
Shela
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Hi SBE. All fine here. The virus appears to be under control and people are just getting their lives back to normal after two months of self-isolation. The nation’s low death toll (102) is likely down to an early shutdown.
I was remembering Amarantha recently and can see no posts from her on BCO after October. If anyone has info on her, please post it. I fear she has passed and it would be good to let the community here know this news. This is such a shitty disease, and I’m ever mindful that bad news is as common as good. Best wishes to all.
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Dear All, my wife is fine. All good scans at the end of May. Don't remember if I posted it here. How's LoriCA, it is always so good to hear from her... Saulius
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The past few weeks have felt like a blur to me, a non-stop barrage of scans and lately everything requires two visits to the hospital or cancer center, bleh. I wish this was easier. Insurance would only approve a CT scan this time instead of a PET/CT, which was really stupid because CT report didn't state any comparison of tumor size(s), only that they were still there, and of course doesn't show uptake values which has been important in the past to know when my cancer started spreading fast again. Anyway, my oncologist said it shows nothing improved but nothing drastically worse, and there are two new areas of concern - the bone marrow that he suspected and now my thyroid too. Next is MRI of both brain and spine. New pain meds to try to get the headaches under control because they are really messing up my life. If we can get the headaches under control I'll be doing okay. I've been focusing on my garden to keep busy when I'm not at the cancer center. Still only leaving the house for medical appointments because cases/hospitalizations are rising here, our death rate is at an all-time high, and there's an ugly backlash against masks and social distancing.
TT I believe the same about Amarantha but I don't know her real name to check. A few months ago I had even spent several hours on the opera website she was writing for to see if I could figure out who she was, but no luck.
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Hello All
I've been off the boards a while. Im going on my 6th year NED with triple negative/inflammatory bc. Whew a mouthful. I do lurk, been as busy as possible with being in quarantine. As many have stated, as cancer patients we are used to being indoors, sequestered.
TT i too am thinking of Aramantha. I fear she has passed. I'm going over some private messages she sent me a couple of years back. I hope i can find her name.
LoriCA as well as others you are a true inspiration. I wish all the best.
Val
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I miss Amarantha too. What an amazing woman. I hope someone can discover the details, like all of us here. I fear she has passed.
Didn't she make us laugh, and marvel at her exploits and travels?!
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Hi All. Sorry have been so busy lately and at times I just hide in my own world. The thoughts of cancer is always on the back of my mind and every ache and pain pushes me even further into a dark place. Lori as always I keep looking for your posts and all the lovely people here.
Wishing you all a blessd week ahead.
Flira
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Hi Flo
Sorry to hear things are difficult right no. I can only empathize, but in my own sufferings I have learned to file your thoughts away in a box and lock it until you are ready to deal with each box. I know it sounds silly, but it has helped me, during a very scary time in my life. Although, I did not have cancer I had a serious bilateral pulmonary embolism which almost took my life. I used this coping trick during hospital stay to help with the anxiety and isolation I felt.
I really hope you can find strength and know that we all support you and I am a great listener. You are always so polite and I am blessed to be a part of this forum.
By the way, are you from Canada and where? My sister and I are from Vancouver.
Take good care
As I say to my sister, Please be kind to yourself.Shela
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Hi Flo,
I completely understand. I think many people around us don't, especially friends and family. My mom made some comment a while back about some minor issues she was having with her feet, and said something to the effect of "I hope you don't have to deal with this when you are my age". It pissed me off, and my response was that most likely I will die long before that. She seemed a bit taken aback, but hell, her feet issues are a joke compared to what we have been through and continue to go through. It has been over a year an I am still getting treatment and still dealing with side effects and am so tired of it all.
I don't know how to deal with the looming threat of the cancer returning. Right now I am just focusing on getting finished with treatment, but at some point I will have to figure out how to live with it.
Shela - I agree with the put it in a box comment - that is what I do. I learned that technique really well thanks to a bad childhood.
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Hi Blue
Glad to hear from you. I wish I knew how to help. I see how difficult this is for my sister and sometimes all I can do is just listen. She is triple positive like you and finding some of the side effects unbearable some days.
I truly wish you well and offer you support and love🥰
Shela
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Hi Everyone,
Has anyone had radiation prior to mastectomy?
Thanks
Hope everyone is well.
Shela
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Hey Shela, Never heard of this. What's the rationale?
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HI Traveltext,
My sister mentioned she may require it before surgery.?? She meets with RO and surgeon in the next 2 weks. I will find out, and keep you posted.
Thanks for replying.
Shela
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Hi Shela,
My memory is terrible these days, but I recall this was discussed for me because of the worry that even after chemo my skin was still affected. My skin was still showed symptoms of IBC. I also recall they really did not want to do radiation prior to surgery, as it can cause issues with healing from surgery. They did a punch biopsy after I finished Taxol and AC, and luckily the post-chemo punch biopsy came back negative so I was able to have surgery prior to radiation.
Where is your sister in her treatment? Is she does with AC & Taxol? Are they seeing a good response?
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Hi Blue,
My sister has done AC.She has one final round of Taxol with Herceptin and Perjecta on July 16th. Her breast is less red, pinkish, much softer but the swelling has not diminished.Still hard on one part near nipple.barely any peu d'orange left. Maybe the swelling is a concern? She meets with surgeon then Ro in the next 2 weeks. I will get more clarifiication then. Maybe her final chemo round will KO the remaining nasty cells. This past week has wiped her out. She has been in alot of pain neuropathy. She hss been taking Gabapentin with minimal effect.It sucks. I hope you are feeling better these days 🥰
Thanks for your help.
Shela
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We all remember Amarantha. What a lovey forum member she was, always as interested in the rest of us as we obviously were of her. She disappeared from the forum in November last year. Ive looked through her posts and found her real name and have just found an obituary to her. Here it is:
Tribute to Paula Gaubert: singer, colleague, friend
Paula Gaubert was born Paula Goodman near San Francisco, California. From her training in classical dance she keeps the beauty of the port and the smile, constant. Her studies in French literature give her all the tools to write wonderfully and lead her to her inseparable husband, friend, confidant, comrade in life, in poetry, in concerts, Alain Gaubert.
This passion for the arts, Paula Gaubert expressed it for several decades as a lyrical singer. Trained in San Francisco and New York, she made her professional debut in Octavia (Cléopâtre by Massenet), and in the title role of Ariadne et Barbe-Bleue by Dukasen 1998 with Opera Manhattan: one of the many opus in which she will have been acclaimed as a singer, before reporting it several decades later as a journalist on our pages, with this intimate knowledge of scores and voices.
Paula Gaubert holds great roles for opera companies across the United States and beyond: Madama Butterfly for Utah Lyric Opera, La Fanciulla del West in Provo (Utah), Santa Barbara Opera and Berkeley Opera in California. Agathe in Der Freischütz (Weber), Senta in Le Vaisseau fantôme (Wagner) and Manon Lescaut (Puccini) for West Bay Opera, Lady Macbeth by Verdi for Berkeley Opera, and Tatyana by Eugène Onéguine (Tchaikovsky) for North Bay Opera. In Europe she is Leonora du Trouvère at the Berlin Konzerthaus, sings in recitals and settles in France. She works for the transmission as President of the International Lyric Competition-Festival "Vienne en Voix" of which she is each year the "American star" of the gala concert.
Paula Gaubert joined the adventure of music criticism with the same immediate, communicative and unreserved enthusiasm that has marked her entire life and career. She published her first article for Ôlyrix on May 12, 2017. It is the image of all the following and her image. He reports on La Double Coquette, where, as she writes, "the contemporary composer, Gérard Pesson and his collaborator, poet and novelist, Pierre Alferi, skillfully add their contemporary creation to the baroque work La Coquette Trompée (1753) by Antoine Dauvergne. " A mixture of genres, from baroque to contemporary, in the form of richness and openness, perfectly corresponding to Paula Gaubert. Her pen is already as precise as it is rich and subtle, the intention to understand and transmit is evident. Insightful in her analysis, and sadly prophetic (Paula always knew she was condemned, but never said so other than with a huge smile), in her first review she underlines the paradox of this opus: the first word is "Silence! ".
Always anxious to find the right word, the word which best reflects the sound reality, Paula made a point of encouraging the qualities (in particular of young artists in training), by underlining the wonders, by offering tracks improvements for faults. Paula Gaubert wrote as she lived, and as she sang, with joy and a huge smile.
The list of reviews published by Paula Gaubert is a journey through opera houses and festivals, through the beauty of music and of the pen that gave her the strength to fight so courageously and for so long against the disease and in the service of art.
REFERENCE
https://www.olyrix.com/articles/actu-des-artistes/...0 -
Beautiful tribute, TT, and enormous thanks for tracking it down.
Our lovely Amarantha, whom we just knew as a funny, talented, articulate presence online, was in fact a gorgeous individual with an amazing professional resume.
Rest in honor, Paula.
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Thanks for posting the pic SBE. I can see you were supporting Paula way back. I recently went through all the Amarantha posts as research for an article I'm writing titled: Grief in the Digital Era: Mourning A Virtual Friend. I found, just once, where she mentioned her name in passing and then, further on, a mention of the French website she wrote for. Finding Paula's obituary brought me great joy, as I know it will others here.
Here is the article I wrote about Paula:
https://advancedbreastcancer.net/living/grieving-virtual-friend0 -
TT, I would very much like to read your article when it's ready. It's a subject about which I've often marveled. I'll know someone simply by a user name and by swapping messages back and forth, and when I hear they have died, my grief is enormous. I still weep over friends I've met here and wouldn't recognize in person, but their passing affects me deeply.
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Thank you for posting about Amarantha. I’m sad to hear the news thoug
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Thank you for finding and posting TT. I'm glad you were able to find her real name, I thought I had checked all of her posts for clues but apparently I missed that one. She was a beautiful woman inside and out and I really miss her.
I also found this written by her husband (English translation):
November 11, 14.12. Paula passed away. She left very slowly, without opening her eyes, just stopping breathing, with a beautiful calm face. All of you who knew her know what we have lost: passionate about paleontology, IT expert, fierce, poet, journalist, photographer, wonderful singer, speaking five languages, became a fine medievalist, cheerful, gregarious, a lover of France who left the doctors and nurses a memory dazzled by her kindness and courage. Thank you to all who loved and encouraged her. Alain.
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Thanks for posting that fine obit from Alain, Lori. Wow, a polymath to boot. I always knew Paula was a great talent, but these new skills take her even higher in my estimation.
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My heart is breaking. Again.
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I'm sorry for the loss of your friend, Sbelizabeth - wanted to say hi, share some good news and also say thank you. I've been off for a bit because I had some wonky CT scans, surgical biopsy, scanxiety, but thankfully I am all clear for my DIEP flap surgery on Monday!
I wanted to express my heartfelt gratitude especially - because of your response to my post, I was able to go to my oncologist with more confidence and explain what I really wanted and how I felt, and she agreed that it wasn't any medical concerns related to recurrence that were influencing her advice to postpone, just that she was worried that since I've been treated for three different cancers this year I'd regret doing a such a huge surgery. My breast surgeon also gave me a bundle of research (just in case my conversation didn't go as well as it did), which was also reassured me that I was making the best decision for myself.
No regrets! I am really excited for Monday, know that it will be a tough recovery but I'm more ready than I ever will be - the blessing of the pandemic is I'm in much better shape than I was after March's thyroid surgery, I've been hiking a lot, and I also don't have to rush back to work so can take all the time I need to work from home after recovering.
Sending love to all, especially those who are mourning their friend Amarantha.
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Thanks for posting this Travelnext. This is so heartbreaking
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It is heartbreaking about Amarantha, I think we all sort of guessed that she passed, but didn't know for sure.
I am happy to see that she lived her life to its fullest, so sad it was cut short.
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So sorry to hear about Amarantha's passing.
My condolences to all of you. It is very sad.
She sounded like a Beautiful person.
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Bklynstoops, congratulations on your decision to move forward with reconstruction. Everyone's different, of course, but I found my recon surgeries filled with HOPE that I would need "breasts" for a long, long time. And sure enough, here I am, almost 9 years from diagnosis.
Today is your DIEP. I'll be praying for a successful surgery and a smooth recovery. You might want to head over to the breast reconstruction forum and think about starting a thread for "July DIEP" so you can share this experience with others going through it. My group from the 2013 DIEP is still together, sharing life and occasionally meeting up. We were supportive and compassionate with each other, and it was wonderful to connect to women going through the same thing.
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