Choices

hr_againsttheflow

Hello lovelies.

I am posting on behalf of my mom, SadieJ...
Her name is Patricia. She found her peace today. She found soo much support and love here with you all. Thank you for giving her that. And thank you for receiving that from her as well. She was a beautiful and incredible woman. Oh the stories I could tell!!! She was excited about this group to show people the paths available and outcomes possible. To provide hope and comfort. You are all incredible. Thank you for joining her on this journey. Many complications arose... predominantly due to being overmedicated, as if for end of life, years too early. By the time she moved closer to me, she was taking enough pain medications to sedate an elephant. Her kidneys went into failure and that ongoing pneumonia you read about was likely caused by aspirating her food from falling asleep eating because of her meds. Advocate for yourselves. She was awake 20min a day at most... existing. After moving south she landed herself in the hospital where they saved her life. They provided her a quality of life we hadn't seen in her for YEARS!!! We were soo thankful for the conversations we could finally have again. It was a roller coaster of highs and lows. In the end... the cancer continued to spread and she was no longer able to eat or drink without tragically painful and exhausting reactions. Mercy was shown to her today as she took her final breath peacefully in her sleep. She was young... 67, and soo in love with life. It was her goal to make it to the meteor shower peak last night, and she did just that. She went out her way, per usual. The meteor shower is still going on tonight, so should you read this, please look up and think of her.

Thank you for loving her and offering her this community. You were all cherished sooooo deeply by her.

Love and light.
The daughter.

marlakeeth

I am so sad for SadieJ, AKA Patricia, she has been on my mind quite often and thinking that this is what we all have to look forward to. Thank you for her daughter's post. It's nice to know that she is safe and out of pain.

On another note, neuropathy in fingers and toes, yes, acupuncture does help but the effects are not long-lasting.

Completed all of my treatments, chemo, surgery and radiation since the end of May. Just trying to get back to my life, not my cancer life for now. Had an MRI of both breasts the other day and will follow up with the surgeon in a week. Take care all….

RocDocVic

https://csn.cancer.org/discussion/comment/1717329#Comment_1717329

I'm so very sorry to hear this. She was a beautiful soul and made our group with her sharing and caring for others. I'm glad she'll no longer be in pain and that she was able to reach the meteor showers. Kindest regards, and condolences for your family.

claoh

Thank you Against the Flow for sharing about your Mom passing. She was always so resilient fighting this battle.

You and Don meant everything to her and so glad she accomplished her move to Georgia to all be together.

claoh

Hi group, I must admit when I heard of Sadie's passing my heart said "this is the end of our blog". She was truly our heart and soul. Then this morning I woke up with us on my mind. We have all passed the chemo stages and at least Marla and Love are done with it all and on to getting back to their pre cancer lives. Not sure if RocDocVic has any more radiation or surgery to face.

Sadie's dream was to show others our paths and dreams, journey through it all. For some unknown reason we register having a huge following, 8552 as of this writing. I have no idea who they are or why they check in so often other than our journeys are of interest. With that said, are you interested in sharing this part of your journey - post chemo. Even if it's once a week or two.

Having said all that. I am looking forward to surgery in two weeks and there are still a lot of unknowns and decisions to make. I would love to hear how it was post surgery for you. Were your wrapped for a few days, or go right into a compression bra. How long did it take to feel like getting out and about. Vic, I know you went to Mexico right away for a vacation.

My hair is starting to grow back and yesterday I wore a skull cap for the first time since it started. When I got home and saw the indention the skull cap made I was worried it may crush the new little hairs! I'm thinking of buying a few more ball caps and rimmed hats to avoid skull cap use, although do I really need it under the wig I was planning to wear to my sons wedding in 6 weeks.

Think that's enough for now. I do miss you guys, so we'll see where we go from here.

LovesPrimes

I'm still here. I have to say when I saw Sadie's daughter's message, I had to close my laptop and just cry and pray for a while. I'm so very thankful for her presence here and I believe continuing this thread honors her memory and, like @claoh said, her dreams. I hope we continue to come here and share our experiences, help others when we can, and keep fighting this fight together.

I am scheduled for revision surgery but less than a month before my husband and I plan to finally celebrate our 35th anniversary (11 months late!) on a week-long cruise. I'm on a waitlist to get an earlier surgery date, hopefully in October. We scheduled this after my diagnosis and before my first surgery (mastectomy), more than 18 months in advance assuming I would be done with all the surgeries and just on AI meds. I am reminded, pretty much all the time, how little control I have over, well, much of anything.

@claoh I know you know everyone's experience is unique, pretty much in everything, but here talking about mastectomy. And I'm curious how order of treatment affects recovery from mastectomy. I have heard of one woman who went home and vacuumed the day after surgery (though she says she wouldn't recommend it!) and another who went boating with family the weekend after, refusing to miss out, but holding her arms crossed over her chest the whole time. For me, mastectomy was my first "treatment" and though I chose it over lumpectomy, it was still deeply traumatic for me. I couldn't look for a couple days after I came home, and cried hysterically once I did. The nerve block they put in place during surgery didn't work for me and I was out of my mind in pain. So far as mobility, I couldn't raise my arms over shoulder height for several weeks. I did eventually get range of motion back. (So very thankful for an awesome OT who is still working with me.) But I still don't have a lot of arm strength and very little endurance over a year later. It might be a different story if I had been in better shape before the surgery.

Also, I'm a rule follower so maybe I could have done some things sooner if I had tried but I carefully followed the surgeon's instructions. Don't lift more than 5 pounds the first two weeks, no more than 10 pounds in weeks 3 & 4, etc. It had been recommended ahead of time to put things I would regularly use/need at a height between my waist and my shoulders. I also got help beforehand moving an electric recliner into our bedroom and I slept in that for a couple months after mastectomy and again after reconstruction surgery. Another good tip was to have button-up shirts/dresses/pajamas because it was a LONG time before I could put clothing on over my head and we had to access wounds, drains, etc. multiple times a day.

For me, my chest was wrapped when I first came home and the wrappings were removed at my first post-op a few days later. Then I think it was 3-4 weeks of nothing, no bra. And then 2-3 months of a zip-front sports bra 24 hours a day. I got sick to death of those sports bras, lol. Again, everyone is different, but I will say with or without a bra, I found many ordinary fabric types and/or clothing features (like the hem) to be painful. I had to find super soft fabrics and necklines without a thick hem. (Not sure I'm describing that right.)

You are such a warrior and you've already overcome so much, @claoh. You have a "family" here on these boards that is lifting you up in prayer and hoping for this part of the journey to be so much easier than you might think it could be.

Please feel free to ask me anything; I want to be helpful in any and every way that I can. I also hope you will hear from some women who had mastectomy after chemo and what their experiences were like.

RocDocVic

Anyone still in our group? Last check-in was mid August. Wondering how everyone is doing. I'm still on Herceptin and Perjeta targeted drugs through November 14th. Still battling with my Oncologist to get the circulating DNA test done. I want the data that shows either no residual cancer or if it's still in my body. They have no definitive data to show either one, or if the Herceptin and Perjeta are working. Oncologist says it doesn't do anything for overall survival rates which to me is not the point. Not knowing causes more anxiety. Any suggestions on how to handle this situation with my Oncologist?

claoh

Hi Roc Doc Vic. You are further along than I am so not sure I can give any guidance. I am confused though that you mention there is no definitive data to show what you're looking for, if either of the drugs are working? Is there another test other than the Pet Scan that can do this? I just assumed we'd continue to get our 6 month mammograms and pet scans. I know, it is not a pleasant thought to always be wondering if the cancer is going to return.

I had my breast surgery about 3 weeks ago and get the stitches out tomorrow. Now we are hurrying to get radiation going as I did have some growth already between my pet scan and mammogram for the surgery. This is a very resilient critter. The chemo did not kill all the cancer. As of the surgery all was clean with the margins and lymph nodes.

marlakeeth

Claoh, I am so sorry to hear that the PET scan showed some growth! Wow is all I can say. I had my lumpectomy in Feb 2024, then radiation in May 2024. I just had an MRI of both breasts and no growth was seen. Now I am wondering if yours was detected using MRI or PET? Give me a shout out!

LovesPrimes

Hello, sweet ladies! So glad to hear from each of you; I was growing sad to think this thread might disappear.

I'm scheduled for revision surgery in a couple months but on a waitlist for and hoping for an earlier date to open up as the current date is less than a month before a cruise. Recovery from DIEP reconstruction was so hard and so long and still not complete (hence the need for revision), but I feel like I finally turned the corner and I have finally been getting a little more energy and stamina and starting to feel a little more like myself. I really want the revision surgery out of the way and that part of treatment behind me.

This week, I am officially back to work full time. I go onsite two days a week and work from home the other days. @claoh I'm glad you had clean margins with surgery and that they will be getting your radiation going quickly. I'm praying for you! @RocDocVic Just my opinion, but I think telling your oncologist that not knowing worsens your anxiety and anxiety is counterproductive to healing should move the needle (assuming your insurance is willing to pay for it). @marlakeeth So glad to hear your MRI was clear!!

claoh

It was a pet scan Marla. I'm going to have another one next week. They are aware how aggressive my bugger is and hoping to stop it since I got the good report after surgery. They predict I will go back on some kind of chemo in the pill form.