CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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Love it Gma!!!! As adults we need to lead by example to the kids out there. Change starts with us!!!!
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I agree that expressing concern about rioting in the streets isn't political and a family member of mine who was a teacher was injured yesterday while in his classroom during a high school student protest that turned into a violent action, so I feel this pain.
However, I am sorry but it IS very personally hurtful to me to call a protest a 'temper tantrum'. Why? because it appears to me that choosing those words means that that violence and hate are viewed as a 'sour grapes' type of happening only among those who lost. After all, of course, only children who don't get what they want have temper tantrums. Winners who get what they want don't have temper tantrums in my experience.
If the intent is to say that only those who are violent are throwing a 'temper tantrum' that also is hurtful because it diminishes the negative impact of violence (my image when I hear the word 'temper tantrum' is of a toddler on the floor of the grocery store: he or she makes a lot of noise but what harm does she really do other than stressing out her mom?)
Our choice of words matters and they hurt. Right now they hurt a lot for me, partially because of my family member who is recovering from being beaten just because he is a teacher who got in the way of some angry high school kids using an election result as an excuse to run wild (beating up the teacher is NOT just having a temper tantrum).
However, the words hurt even more hurt as the mother of a beautiful, smart woman and an even more beautiful and smarter girl who is my granddaughter, both of whom happen to be Muslim, and both of whom are scared out of their wits right now and believe that their life may have gotten more than a bit harder.(Would marching peacefully and holding a sign saying one is a scared, proud American who feels hated because of their religion be having a 'temper tantrum' ?).
Yes, love is what we all need. Let's keep it at that and choose our words wisely. Thank you.
Octogirl
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I have much to say but Crazytown is not the place for most of it. Echoing what GmaFoley says, I will say that some of what I have seen in these last couple of days regarding a renewed call to public service is giving me some measure of hope. I see many people donating, volunteering, organizing to protect the vulnerable.
Last night, I went to a meeting of my school board committee. It was heartening to spend three hours working over the nuts and bolts of a long-term project to improve the schools in my small patch of the city. Hoping that we all have outlets for giving back to our communities, even while we wait to see what will happen.
"If I am not for myself, who will be for me?
But if I am only for myself, who am I?
If not now, when?"
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Octogirl, I was so sad over Leonard Cohen too. What a great talent. Iris, glad things are improving for you. I got a text from Beppy this morning!! It made my heart soar. I love her!!! I love all of you too.
Ducky, you are entitled to not have to learn how to record on the TV. You have earned it
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Hello my dear friends. It's been a long tine since I've been here. I apologize if it seems I abandoned Crazytown, but I have been overwhelmed with sadness and frustration and being here did not help me for the first time. I don't know why. I won't attempt to catch up but I wanted to share, at Beppy's request, an update.
I was alerted previously to her ongoing status by several of you here, and I'm very grateful for it. To pick up where others have left off, Beppy is slowly learning to use the phone again. It was extremely important to her that I tell you all she has not forgotten anybody and loves us all. I reassured her that we all of us know that. In fact, I told her I'd never known a case where so much was being sent. She said she feels it.
A really big part of her struggle apparently has been nausea. She doesn't remember having radiation at all, has been told she fell and hit her head at some point. She doesn't know if the nausea is from the WBR, the radiation, or other causes. If she even moved her head slightly she would vomit. Finally, after the docs fiddling with her meds (which they call in, since she can't get to the doctor) as of yesterday, they have found a combination that she can tolerate and that she feels has stabilized things
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I am typing on my phone, so wanted to split this post up, in case it got gobbled up.
Anyway, as you probably imagine, Bud and Robyn do everything for her. She is very grateful but knows they are exhausted.
They are finalizing plans for her to enter the hospice program this weekend. Beppy regards this as an opportunity to get some physical therapy and try to improve her QOL. She says she never does like to deliver bad news, but is honestly viewing this as positive for herself and her family. She has had friends (Blondie for one) who have done very well on hospice and she feels it is an opportunity. She said she will not undergo any more treatment, which is part of the hospice decision.
She reiterated how much she loves each and every one of you. I reassured her she was loved equally back. She knows it is very hard when we have little to no information. But still she said she feels your love and prayers.
She says especially now that the nausea is better, she is not in pain or discomfort, and feels no symptoms that she's aware of from the cancer itself. Her voice was sweet but a little weak, and got stronger during our conversation.
I hope I have not left anything out. I know she will continue to try to reach out to people. It is very difficult she said over and over, she is relearning everything.
So, dear sisters, please don't be angry with me for being away. For many reasons I am finding it a bit easier not to be here right now. But it doesn't mean I don't care deeply for all of you as well.
I don't know if Beppy will call me again. If she does, I promise to update you here. But we both acknowledged how hard it is for her and her desire to connect with others as well.
Wishing you all love and light as we go through the many struggles we all face: those we have in common as well as those unique to each of our situations.
🙏🏻
Katy
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Katy! So good to see you! I have thought of you often, and wondered how things were going. You don't have to apologize for being gone, just do whatever works for you.
I'm glad to hear that the doctors seem to be getting Beppy's nausea under control. That's an awful way to feel all the time.
Iris, it sounds like your surgery went well. Will you go to physical therapy next?
I've been working a lot of hours at work, so I haven't been on much. I'm still very, very, crazy though. Sigh.
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Octo, thanks for both the Leonard Cohen lyric (the chorus has been a comfort for decades) and your thoughts about the protests. Peaceful marches and demonstrations are fine, riots are not. Working behind the scenes to protect everyone—and not “scrub” the Cancer Moonshot—is essential. That’s as far as I can go on this thread.
Katy, I think I echo everyone here when I say that nobody was upset with you for going off-line for awhile. Glad to hear Beppy is feeling better, sad to hear that hospice will be necessary….but people can live a long time on hospice. It’s all about maintaining quality-of-life, not necessarily preparing for or hastening the end of it.
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Octo, thank you, a good and dear man, especially now we can't afford to lose any "voices", like his.
I hope by now Bep has contacted each of you
Can't believe you came here, katy, the world must be ending thanks
Beppy will be 'at home' with hospice, this will give her husband and daughter some help, and I wouldn't be surprised if Beppy just got stronger and stronger. Her voice is even stronger than it was the last time I talked to her. Bud had told me that she HAD fallen in the shower,months ago, that was when she ended up in the emergency room the second time, before radiation. The medication that she had such a reaction to, is what robbed her memory, thankfully. I am planning to go see her, perhaps early next week.
Octo, I really wish I could be there with you and Sula, please please give her a hug and my condolences (you know what for).
If we are going to say what we were up late for, that is part of a larger contentious matter, and we know we are all not going to be thinking the same about this matter, then it is probably best to stay away from this subject except for pms. All I know, is this matter was bound to radicalize some people, including me, and students have always been a voice in the wilderness, after all, this is what they will be inheriting the fall out from. You wait and see. I remember joking, sort of, with my oncologist and breast surgeon, about lymphedema. That I would no longer be able to protest nor get arrested, because of fear that my arm would be wrestled back. I am not worried about my arm any longer, I am worried about nuclear annihilation. Amongst other things
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thank you for the update Katy. We've all missed you a lot. and Love to Beppy!
Octogirl
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Katy, so very nice to see you post. I so appreciate the update on Beppy. Getting a text from her helped my heart so very much. My mom and my Wyatt have both been on hospice for 3 years or more. It definitely can improve QOL. Octo, give sula a hello from me. I miss her food porn.
Tomboy, if you are going to see Beppy maybe I can drop off a gift to you first? Please let me know when you are going.
Love to all of you!!! Peace and love is what we need.
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cubbie, yes I will be doing pt but not till after they take the staples out and that is next wed. Will ask when I can start it but for now my head hurts if I move it the wrong way
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Jackie: glad to see you back, even if for only a quick gallop through, and thank you for the update on Beppy.
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Katy, thanks for the update on Beppy. Love to you both.
Iris, I'm so happy to hear that things may be improving for you.
Hi and hugs to all!
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Anyone with an oncotype score of 29 and if so did you receive chemo ?
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Jack, thank for the update on Beppy.
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Katy, thank you so much for the update. Sending much love to Beppy. That's what matters, how we live each day, not all the bs going on. we all have different takes on world issues, and there are forums for expressing it, just not here
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Twinsmama, welcome to crazy town, and i do hope that you have got your question answered by now. Let me look around and try to find an appropriate place for you here, where maybe there are women who can help you with that. What have your docs told you? I would think that with no nodes positive, and ER +, your grade 3 would mean that chemo would be very effective for mopping up any stray cells (is what they say), that it might be ok for you to do just endocrine therapy. I do know that there are valid arguments for a decision either way. Also, the fact that you have her2 neg, would probably mean that you could safely forgo chemo. How old are you? because chemo has some long-lasting "special effects", that if I were you, I would do everything in my power to forgo. That is a tough decision. What are your doctors asking you to do? Ladies?
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Twinsmama - Before I knew what my oncotype was my oncologist talked it through with me. I had decided before I knew that anything over 25 would be chemo.. I was a lucky that my oncotype was low.
Thank you Jackie and Tomboy for the updates on Beppy. I just pray she has some wonderful quality time with her family.
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Twins, with your tumor being PR- and Grade 3, I suspect it would be a bit more aggressive than a Grade 1 or 2 Luminal A (ER+/PR+/HER2-) and that if an OncotypeDX were ordered it would be in the intermediate-risk zone, and chemo would probably have been indicated unless age & comorbidities contraindicated it. Hormone therapy alone might not be sufficiently effective. Ask your MO what’s next.
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Tuesday is my colonoscopy. I've gotten lots of tips and tricks from our fellow forum members. I've laid in a supply of Gatorade, bottled water, wipes, and so on. I started the liquid diet an extra day earlier than called for, since that's supposed to make it easier. If Crazytown didn't have a bathroom before, it will now.
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Cubbie: (Laughs and cries at the same time) Of course CrazyTown has a bathroom. What do you think we are? What's more, we have an absolutely AMAZING plumbing system, down which you may flush anything and I mean ANEETHING you want without plugging the pipes or backing up the septic system. Got an oncologist you can't stand? An annoying sympathy trope? or the (clears throat sympathetically) the aftereffects of getting ready for yet another [beep] medical test? It's all good.
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Twinsmawmaw: hope I got that spelling right, though I'm sorry I haven't any specific advice for you. Stick around and let us know how your testing and treatment's going? Please?
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Here’s my tip: go out now and buy Desitin, A&D Ointment or similar. (Usually sold to soothe or protect against diaper rash). But start using it before that first fateful Hershey-squirt of a “prep poop.” I didn’t. By the time it dawned on me to dig some up and slather it on, I felt as if I had been pooping razor blades embedded with ground glass.
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Something extraordinary did happen yesterday. I was at the CBA for Bar Show rehearsals (yes, even my aches have aches), and a few doors south is Pritzker Park, that fronts on State St., has a number of what appear to be street people, and is usually the starting point for demonstrations. But as I walked to the subway entrance to go home, I noticed the people who were massing were standing around in a very orderly fashion, even seemed to be lining up. Then I saw two tables: one had canned goods and used clothing; the other was serving food. Hot food. Roast turkey, mashed potatoes & gravy. I asked someone who seemed to be a volunteer if they were feeding the protesters to fortify them for a long night ahead. He answered, “no, this food is for everybody. Would you like to get in line for some?” I assured him I didn’t need it but it it was a wonderful thing they were doing. Turns out it was a joint effort by the Chicago Coalition for the Homeless and Greater Chicago Food Depository.
You might have begun sporting a safety pin lately. Yesterday at rehearsal, a cast member brought in a pile of safety pins decorated with seed beads or crystals. She requested “take a pin, leave a penny” (we all left at least a buck), and the proceeds would be donated to Planned Parenthood in the name of Mike Pence.
The head writer’s daughter lives in Atlanta and recently married her longtime partner. She helped establish a school in Atlanta called the Fugees Academy, which began as a middle school for Middle Eastern refugees and has expanded to elementary and high school. They are selling t-shirts emblazoned with “Refugees USA Welcome.” The link we were given doesn’t seem to work (or may have been taken down). I will post a working like if I can find one.
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Thank you for that post, Chisandy! My cousin does some fundraising for the Chicago Food Depository, so it's nice to hear what they're doing. Oh, and the politics......not gonna admit what my leanings are, but it's hilarious to donate money to Planned Parenthood in Mike Pence's name. I live just north of the state line w/Indiana, so his policies impinged on me more than I appreciated.
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I like that donation as well
We'll got wierd lump on my head ,close to where the shunt is to drain the fluid
My pal told me to callater doc, i was thinking of waiting till my doc appt, so I did but they said to show it to my pcd tomorrow and then show it to doc when I get my staples our on wed, no,pain but wierd
Looking forward to getting staples out
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Great story about the food line. That is heart warming. Iris, I hope it is nothing.
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Iris, most likely a seroma.
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Back in CrazyTown today. My best friend's 19yo daughter (my goddaughter) is going for a vacuum assisted biopsy following an ultrasound. The radiologist told her they want the biopsy "just to be sure." Does anyone have experience or know of anyone this young going through BC?
Thanks.
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