Apparently I Am "Just Diagnosed." :(
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I know where you're at LW. My best word of advice for the today - it's the first day of spring & we are having a lovely day. Get outside and try to breathe in & out deeply (without getting too much pollen). Take your mind off the treatment and the disease for even just a few moments if you can. Hang in there girl. Remember the old advice - you don't have to be brave, you just have to put one foot in front of the other. And your mind can be in neutral to do that.
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Hey L-Dub
Seems entirely sane of you to shed some tears and mourn life as it was.
It's a good time to be extremely kind and gentle with yourself. Ask your inner child how she is doing and if she'd like anything in particular when you get a few still moments...
I remember doing that and she said 'chicken soup' please...which made me laugh but I made it for me and little me and we both felt much better.
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Thanks -2, Astrid, and Jana.
" /> I hope you all know how much it means to me to have your support through this. It's so easy to get discouraged and fearful if I let myself "go there." Some days stark reality sets in and I'm forced to think about what's ahead, then I'm overwhelmed. Cancer SUCKS. 0 -
Java - that's a great saying. Thanks for posting
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yeah!
Love that
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So I'm officially HALF done with Taxol!
Next week I have an ultrasound on Wednesday, the day after chemo #7. Makes me a little nervous; I hope to get good news as far as the effect of the treatment, so keep your fingers crossed for me. A lady got to ring the bell during my treatment today; that's the first time I've seen that. She was crying and it was a poignant moment to see. I don't believe I will ring that bell when my treatment is over; I'm superstitious about tempting fate.
In other news, I ordered a cheap hair clipper from Amazon; it's time to get over the hair whining and I'm sick of picking hairs off of every surface in this house. I wore a scarf to chemo today to hide the big bald spots. Baby steps!!!
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Big congrats on halfway point LW.
Love the Egyptian dance emoticon
Will keep you in my prayers for ultrasound.
🌾🌸🌾🙏💖
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LW - So the glass is half full!!!
It was my experience that a buzz cut was better than shaving the head. Just short hairs and not as much problem with ingrown hairs. If you don't already have one, get a lint roller. That worked the best on all those little hairs - both on the pillow and on my head. I wore a cotton/jersey sleeping cap at night & around the house that contained most of them - then just rolled them off.
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Hey there, Astrid. Hope you're doing well these days and are safe from those terrible floods. I appreciate the prayers and good wishes; scans can be so dang terrifying.
Thanks, -2. I thought I could deal with the pixie cut but it's just making me crazy(er), so tomorrow is buzz day. Honestly I don't have much left to buzz.0 -
Thanks LW
I'm in Melbourne
Quite safe from floods
Awful for all thosegoing through it.
Buzz cut sounds good.💖
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I'm glad you aren't in the flood zone, Astrid. Oh... the buzz. Somehow that hasn't happened yet after all. My husband asked if I was ready and all at once I wasn't. So I'm still looking like a duckling with mange. I feel so ugly.
Tomorrow I have Taxol #7, and I have a visit with my MO. Then on Wednesday I have an ultrasound and an appointment with the surgical oncologist. So the Never-Ending Anxiety is back. I'm really nervous about the US... what if the chemo isn't working?? And of course I have been avoiding thinking about the mastectomy, but apparently the surgeon has other ideas. I'm so scared.
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LW422, I'm sorry you're feeling so low. There's a dark place in our minds that we've all been to--what if the chemo doesn't work, what if this bursitis is really bone mets, what will my family do without me... it's pretty awful, and even more so when you're feeling ugly.
A friend shared that she imagined a big "delete" button in her mind, so that when her thoughts went "there," she would mentally hit DELETE!
Would you feel better if you got the hair thing over with and had the buzz, and stopped feeling like the mangy duckling? Then you could wear soft caps or wig or scarves and stop shedding. Eyeliner and girly earrings. And be kind to yourself.
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Thank you, SBElizabeth. I know that most people here can totally relate to The Dark Place, which makes it a soft place to land. Since I don't feel like a sick person it's easy to coast along for days without CANCER!
thoughts. Then I get notice of the upcoming ultrasound and WHAMMO!, back to the dungeon of my mind. Also dreading the consult with the surgeon. I thought I'd cruise through the mastectomy since "GET THEM OFF!!" was my first thought when diagnosed, but the closer that gets the more I realize that I don't want to be mutilated after all. Hell, I just don't want any of this but after winning the What's My Diagnosis? lotto my life is not my own.
Losing my hair has just been the most devastating thing. Who'd have thought that something so minor would make me feel so bad. I can only imagine my despair when the boob is removed. I feel like a freak now so how will I deal with my uni-boob? I guess I just don't think a hat and some eyeliner are going to work for me; I'm stuck in a low spot these days. If I get bad news on Wednesday I might sink to the absolute bottom.
I do appreciate your words of support; I'm just not ready to pull those big girl panties back on yet. I'm going to wallow in self-pity for a while.
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Here's one of the wigs I bought. I hate wigs; hot and scratchy.
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Well, that was random. I met with my oncologist today and in the course of the conversation, I asked why I was having the ultrasound tomorrow. He looked puzzled and said, "I haven't scheduled any ultrasound." So I showed him MyChart with the appointment and he said it wasn't time for that; it will be scheduled after I finish Taxol and was likely a "scheduling error". The appointment with the surgical oncologist is also postponed until that time.
I'm really glad I mentioned that. Nothing like having a pointless, expensive scan that no one needs at this point.
So woohoo, no scan tomorrow and no surgical appointment!!
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Thanks so much, Harley07. People like you make this nightmare a little more bearable, and I sincerely appreciate it.
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LW422 that wig looks pretty good! I ordered a fake pony tail head band, sleeping cap and a short wig too. Did you check out the soft headband that goes under a wig? I ordered one of those too. Just ordering these made losing hair feel little bit better since I feel "prepared". But, actually going thru that will probably be hard. I decided to give up on cold capping, don't want to stay in chemo lab for extended time just to save some hair. Been chuckling at these medical charges coming in, unreal what they charge and what gets paid by the insurance! Way to call out the scheduling error! Hang in there, thinking of you!
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L Dub
That wig looks awesome on you! No way I'd have known it was a wig if you hadn't said. Just lovely.
🙂🙂😻So sorry dark bear has you in it's grip once more. Par for the course though. Body mind amd emotions making ajustments to new circumstance and creating 'what if's' for you to grapple with.
It will pass. I promise and your Spirit is an indomitable force. Hold on to that.
You can do this.
Pretty fab you caught the scan thing. Well done.
Time to take a deep breath and congratulate yourself on how well you are doing.
Sorry for delayed response .Been away from sight for a bit.
Big soft cyer hug
And a dozen You will get through this's for you. 🙏💖
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Hey mamacure! How are you holding up these days? I know you're getting ready to begin treatment; things kind of smooth over once it starts and you get into the routine.
I haven't bought a wig headband; which one did you buy? My problem is that "things" on my head make me hot and irritable, so I'm wondering if a headband under a wig would just make it feel worse. I found a seller on Etsy who makes the most gorgeous scarves and hats; she's a BC survivor and knows how hard it is to find comfortable, nice looking things to wear. Her shop is called WithLoveLana.
I hit my $3000 out-of-pocket maximum so I don't see the medical bills any longer until I get a "recap" from my insurance company. I'm glad they are handling the wrangling of billing.
My thoughts are with you and I'm hoping that you will do well with this. There are so many wonderful people here who have walked this lonely road before us, and are so willing to help us along. Hang in there!!
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Astrid!!
" /> Hello there; I was wondering where you have been lately. Hope all is well with you, and as always, thanks for your unflagging positivity. Thanks for the wig compliments; I've bought two styles and wonder if they'll ever get worn. I also bought some bangs on a headband (do you call them "fringe?") For some reason scarves and hats look a little better with a bit of hair showing.
I had Taxol #8 today and so far, so good. I was tired and sleepy when I got home so took a 2-hour nap. Naps are good! For the most part my dark days are few and far between, but if a scan is scheduled I go off the deep end with "what ifs". Thanks again for your words of support; they really comfort me.
Take care and keep in touch!
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My hair was always my best feature. Long and thick but losing it actually wasn't as bad as I thought it would be. I too, find everything on my head annoying. Hats give me a headache and wigs are just awful and itchy. I bought a wig before I lost all my hair and I never wore it, not even once. The day after I shaved my head, I went out to lunch and shopping completely commando. I decided I was uncomfortable enough with chemo and everything else going on and I wasn't going to add the annoyance of a wig to it. The only time I wore a hat, was a knitted beanie when it was cold out. It was actually kind of freeing. I didn't care if people stared at me. Most of the time I forgot I was bald and didn't even noticed people looking at me. Hang in there. It all gets much better. I'm 3 years out next month and my hair is long and looks better than ever. You'll be in my thoughts.
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Krose53--what a nice post; thanks. I know it's silly... I hardly ever even leave my house since I no longer work. I just can't stand to see myself in the mirror or in the Ring doorbell videos when I walk outside. Pathetic, really. With all the other crap to deal with, losing hair has to sink me emotionally.
I hope you are doing well; three years out is a great milestone! I wish you many, many more years.
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I forgot to add that at this week's chemo, I heard "the bell" rung TWICE. I was too far away to see the ringers but there was a lot of clapping and whooping for both of them.
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Just an update to my progress. This week was my last Taxol and I had an ultrasound of my cancerous breast to see how I'm responding to chemo. I got good news; the SO claimed I have had "excellent" response with decreased tumor and lymph node size. Redness from IBC is almost totally gone.
I met with the breast surgeon to discuss upcoming mastectomy and my options for having a plastic surgeon make the closure to get the "aesthetic flat closure" I want since I'm not interested in reconstruction. I found that the plastic surgeon is also able to perform the LYMPHA procedure that will connect lymph channels to blood vessels after the lymph nodes are removed. I hope that this will help prevent lymphedema in the future. I won't be having surgery until August, so I'll be meeting with the plastic surgeon to discuss these options in the near future.
Next week I begin the AC chemo, which I'm dreading but hopefully it won't be as bad as I imagine. So onward we go! Hard to believe this started 4 months ago; it seems like a lifetime.
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Congrats on finishing Taxol, LW, and it's great to hear of your great response thus far! It's particularly exciting that the PS can do the LYMPHA procedure! Just yesterday I had a tooth extracted (related to chemo--long story, but the quack endodontist left part of a tool in my root and while I was not on chemo, the root canal seemed to be effective but as soon as my immune system was depressed, infection started). That tooth has had two root canals now and it's just been a money pit, so I'll be getting an implant. The periodontist who did the extraction told me he couldn't place the IV and BP cuff on the same arm. I told him the left arm was not going to be used--he could use my leg for BP and right arm for IV. He argued with me, dismissing my concern about lymphedema completely, almost like a schoolyard bully. I was literally prepared to get up and walk out, but he acquiesced, begrudgingly. He honestly did a fantastic job--it's healing beautifully, but I'm not going back to a bully. I've already found another periodontist. Hopefully you won't have to deal with this because of the LYMPHA procedure!
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Beesy--I'm glad you got the dental work complete, but what an ass that periodontist is. I'm glad you're finding a new one that hopefully will listen to you.
I'm happy that there is a LYMPHA specialist at MDA, but one concern I have is that I will have radiation after the surgery. I'm wondering what the effect of rads will be on the LYMPHA connections so I will have plenty of questions for the plastic surgeon. Ugh, always something to worry about but I am so hopeful that I don't ever have to deal with lymphedema.
Hey Jana. How are you these days? Yep, I'm dreading AC but whatever it takes! This is 2021, The Year of Dread.
I hope things are going well for you. 0 -
Hi Astrid,
Thank you for this wonderful reply.
I was not able to see any replies until today, hence why i did not post any.
I had a very good lumpectomy experience at an amazing hospital and for the first couple of months was in a lovely place of peace.
The past month of radiation treatment has been a bit harder and i do not have the same connection with my radiation doctor.
I was pleased to make the decision to leave my position at a community health center and use the month of low radiation treatment to build my private practice. Which i have been able to do.
I have had some wonderful friends around and have taken part in a beautiful angel healing which was delightful.
It's interesting how our mood can shift as we traverse this journey and I have to ensure that i come back to that place of faith.
I have found some time to do some fun stuff.
And need to do more of that.
Thank you again, your post means a lot.
Helen.
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