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Topic: Starting Radiation August 2021 - Anyone else?

Forum: Radiation Therapy - Before, During, and After —

What to expect from treatment and ways to cope with side effects.

Posted on: Jul 29, 2021 02:20PM - edited Oct 11, 2021 02:43PM by MaineJen

MaineJen wrote:

Edited on Oct 11, 2021 to add: If you're about to start radiation, this thread is a good one to read from start to finish. Lots of info and a lot of humor and love throughout. :) I hope I'm not duplicating efforts here. Couldn't find another group under this heading. Anyone else starting in August sometime? I just finished my final round of chemo and am not looking forward to starting radiation so soon. But that's life. Anyway, anyone else?

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Sep 22, 2021 05:07PM Mich21 wrote:

LoL Jen, on that note - I LOVE public speaking and dealing with people, but I do not like the "All eyes on me" feeling when I'm doing something. So, I facetimed my fiancé (They had just changed the rule to no visitors inside) and gave the bell ONE ring. One tiny little clang. And I was like Okay I did it, I'm done. haha. I wish I had the confidence to CLANG CLANG CLANG, but I did not.

We are so alike lol

Dx 3/8/2021, LCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/8/2021 Lumpectomy: Left Radiation Therapy 8/3/2021 Whole-breast: Breast Hormonal Therapy 9/14/2021 Arimidex (anastrozole)
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Sep 22, 2021 05:52PM Serendipity09 wrote:

Mich - Halloween Queen!! I like it!! LOL And Frankenchili, good one, a little bit of everything, sounds good to me!

Jen - I refuse to do the bell too! Don't even want to see it. Didn't do it when I finished chemo and not going to do it when I'm done with rads. I'm happy for those that do, but it's not for me. I think it's the privacy thing. I'm very reserved, maybe too reserved. It's not like anyone I know is there with me. I don't like attention either. My uncle, who is like a brother to me, says I'm trying to be Superwoman; I refuse to let others do for me and so if they don't know they won't try or offer. He 's probably right. It took me almost a year after chemo to even post anything on social media about having been dx'd (this was prior to being dx'd again). Four days later I found out the cancer was back and only the those that needed to know are the ones I told. I almost feel like I jinxed myself.

WARNING: Venting/complaining about to take place...

The hot flashes...OMG! I sleep with 3 fans. One of them is a mini fan that's on my night stand, it's quiet (Holmes #HPF0467 bought it at Target), what drives me crazy about it is the light that indicates it's charging. I put black electrical tape over it to not see it. Like you, I get too cold and have to cover right back up. Last night I actually cried, literally cried...balled my eyes out. I swear I go from 0 to hell in 1.5 seconds (I think someone said that on here early on) and cannot handle it anymore! And it feels like it's happening every 10 minutes. I went to the extreme of buying myself a cooling mattress a few weeks back and it is not working for me. At first I thought it was the sheet, so I started taking the sheet off before I go to bed...Nope. Been taking off the mattress pad for the last couple nights and nope. My son lays on the bed to test and it and feels the cooling effect right away. UGH!!!!! Is there no end to any of this?! I swear I feel like I/we can't catch a break. I am truly grateful to be alive, again just venting.

Today I was feeling extra crappy and my RO was worried that I may have caught covid. I told him there was no way as I'm caged up in my home because I don't feel good so I haven't been anywhere, there is no way I caught covid. He'll probably have me tested tomorrow. Oh well!

To top it off I have a huge, bigger than a golf ball size lump on the side of my breast, almost to my back. I had something similar when I had the expanders in, but it wasn't solid. This thing is so fat and I can feel it all the time as of last night, it actually rubs against the back of my arm. Luckily I don't really need to wear a bra and can get any with wearing a camisole. The RO says it's from rads and that whatever it was he referred to as, is inflamed from the rads.

Ok, I think I'm done venting. Sorry everyone!!

Continuing to pray and send positive vibes to you all.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 23, 2021 07:50AM MaineJen wrote:

1st: OMG Ivy you poor thing! The lump on the side - almost to your back!? That has to feel awful!!!It's from radiation??? Yikes. Radiation really screws with us. Grrrr. So many odd and miserable side effects. I keep hearing the "radiation is so much easier" comment from people - and it makes me want to scream "NO IT IS NOT" LOL. Did they say the lump will retreat or get smaller once you're done? What do they say it is? Yikes you poor thing.

And the hot flash descriptions of the cooling mattress. OMG! Is there no end to this indeed! Your son had the immediate "oooh, nice and cool" and you cannot feel it at all!?!?! This is my life. LOL This is a lot of us, isn't it!? LOL. OMG you poor thing. I'd have cried too. I do cry in situations like these. It is so frustrating and disruptive and all we want is a good night's sleep, right? OMG!

Now, as for the bell ringing. The saga continues. Michele, yes, we're a lot alike! I, too, have no trouble with public speaking and dealing with people, but the "all eyes on me" thing makes me nuts! LOLOL We really are a lot alike - that's crazy! But anyway, last night at tuck in my 12 year old son, Jude, says "You're gonna ring the bell tomorrow, RIGHT?" and I laughed (thought of all of you and our conversation) and said "um nope" and he spent 10 minutes explaining to me why it is SUPER important that I ring that darned bell. "Mom, I want you to ring it and ring it and ring it!" LOLOLOLOL! "Why, Jude? WHY? I'm JUST not a bell ringer and you know it!" and he said "Mom, you missed the bell at chemo - that was a huge mistake! This is your big chance. It will help you remember an ending that matters. It's over and the bell will help you never forget that it is over." Me: Silent. Pause. Thinking. "MOM! YOU HAVE TO RING THE BELL TOMORROW!" me: quiet. Jude: "Mom, video tape yourself doing it so I can see it. I'll know it's over too. That's super important to me, too."

Me: Ok, I'll do it. For you.

So my sweet boy, who never wants to hear anything about cancer treatment, who visibly cringes when I express discomfort because it is so scary and upsetting to him - he needs me to ring that bell and he needs to see that I've done it. He deeply needs to know I've finished radiation and that I've done everything I can to stick around for him. Oh my heart.

So. Ladies: For my boy, I'll do it.

Off I go to my last radiation tx - and yes, I'll ring the bell. Maybe not loudly? LOL. Maybe quickly? LOL. But for Jude, I will do it.

Love you all so much.

Thinking of you all and all of our hot flashes from Hell and crazy positions on radiation tables and wacky and wonderful and not-so-wonderful radiation techs and soft fuzzy slippers and glass pumpkins and Frankenstein and peaceful sounds on you tube and handsome docs and more.

Love you all.

Jen

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Sep 23, 2021 10:15AM Serendipity09 wrote:

I'd ABSOLUTELY do it to if my son asked me to! They need some sort of finality to all of this as well, and even though the struggle may still not be over completely be it that there are more meds to take or whatever the case may be. In Jude's eyes, this is a step in that direction. I'm emotional over here LOL. I'm so happy that today is your last day of rads! You've been so supportive of all of us. you've cried, you'e laughed and here you are at the end of this chapter. {HUGS} {HUGS} {HUGS} especially to you today and for everyone else on here!

When I was done with chemo I didn't/wouldn't ring the bell. There were so many things going on and again, I didn't want to. We were right in the middle of covid, no one was allowed in with me to my treatments (what was the point of ringing it anyway, right?). My nurse, who was with me every week for treatment said that something needed to be done to acknowledge the end of treatment. At the time, every time a person was discharged from the hospital having recovered from covid they'd play a song over the PA system, she played the song for me - Ain't No Mountain High Enough. It was a bitter sweet end and the attention was not put on me and I did not have to ring the bell!

Because the lump is at the end of my suture line (but underneath the skin) he thinks it could be scar tissue that is inflamed, but it's going to be something the PS will have to look at. He was going to reach out to her and her office will contact me. He said things are sunburned within, I get it.

Will check back in with you all later!

Ladies, enjoy your day!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 23, 2021 11:04AM MaineJen wrote:

Ivy - Please keep us posted about the lump thing. I will be thinking of you so much. Also: I love that song. Aint No Mountain High Enough. A bittersweet end indeed. And....

Here is my bell ringing photo (did get the video for Jude):


Love you all ladies! I'm sticking with this group. You're all stuck with me! LOL. I love you all!

Jen

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Sep 23, 2021 11:28PM Esther01 wrote:

How I love each of you!

Congratulations Jen on being DONE with Radiation! OK I almost cried at Jude's sweet talk with you at tuck-in time. I knew he was extra special sweet when he was furnishing the home for his hermit crab and taking the neighbor's dogs for walks. Jen, what a beautiful photo ... your act of ringing the bell out of selfless love, for Jude. That photo will comfort and strengthen him... you are just the best Mom. Ivy, I know enough of your sweet and loving kindness to see that you are too. It was sweet that your son tested the cooling for you. I'm just sorry you couldn't feel it. How I wish something like that works. I am with you gals- so over the nighttime hot flashes and the back and forth between hot and cold all night. I use a tower fan and keep the remote on my nightstand so I can rotate it and turn it on or higher. I just don't like it blowing on my face because it gives me a headache, and it's hard to get it at the right angle to just blow on my legs, because they're under the covers, so you have to get out from under the covers to feel the cool breeze, and then before long you are freezing and have to cover up again. Back and forth, all night. Well, at least we are all going through this exact same issue together!

Ivy, I love the song they played when you were done. My place didn't have a bell, so I didn't have a choice to make. I was wondering if the swelling might be at your stitches. I had a lot of fluid there early on, and the scar tissue is totally noticeable so it makes sense that the swelling might be swollen scar tissue. I hope they check it out for you and I hate that you're dealing with that on top of everything else. My scar tissue is part of the "hot mess" my PT described that she's going to avoid massaging for now. She is going to start massaging that area using the Bio Oil once I get cleared to use it in a few weeks.

Jen, I love how you encapsulated so much of what we've gone through - but also enjoyed discussing together - :

"Thinking of you all and all of our hot flashes from Hell and crazy positions on radiation tables and wacky and wonderful and not-so-wonderful radiation techs and soft fuzzy slippers and glass pumpkins and Frankenstein and peaceful sounds on you tube and handsome docs and more."

So perfectly written!! Love you back- all of you!

Sleep well everyone,

Much love xoxoxoxoxo

Esther



Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Sep 25, 2021 11:44AM Serendipity09 wrote:

Hello to you all!

It's Saturday!! I really needed this weekend break. It's another beautiful fall day here!

Esther so grateful to you for everything you've contributed to this page.

Jen - so glad you rang the bell for Jude! You are a great mom! Glad you're sticking around, I'd like to know how everything is going for you after rads. You have certainly made this group enjoyable, all of you have!

I'm at my mid point, it's gone relatively fast, feels like yesterday I was blessed to find you all.

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 25, 2021 03:45PM MaineJen wrote:

Ivy- you're half way through! Or mid-way. Whatever, LOL, you're making your way through it and I'm SO happy for you! I want to be sure you tell us all when you're nearing the end and when it's over so we can be here for you each step of the way. The way I feel about you and the women in this group: I'm not done with radiation until we're ALL done. LOL. I want all of us to be done with this. We're in this together!

And yay for Saturday!

I'm dealing with some serious burns, ladies. Yowzer. Apparently the radiation continues to radiate inside of us even after the last treatment, so they told me to expect the side effects to get worse before they get better - for about a week or two. Yikes! "ouchy boo boo", as I say to my kids when they have injuries. LOL Oh well. What can be done. I walked today and thought of you all. Still waiting for any sign of hair - and I'm trying to be playful about it instead of upset these days. Doing silly chants all of the time - and tapping my head to wake it up, etc. I've even been gently washing my scalp with my favorite curly hair shampoo and then I'm conditioning my scalp with the conditioner I used to use - wondering if I can trick my hair into returning. - LOL - or - maybe if I remind my scalp what it was like before chemo, it might pop up and return? LOL insane. LOL But better than weeping and worrying all of the time, right?

Here's today's chant:

"Hair, hair, please come back! Red, green, yellow, orange or black!"

LOL! Anyway. love you all so much.

HUGS

Jen

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Sep 27, 2021 04:17PM MaineJen wrote:

Hi ladies. Today I was listening to the "Everything Happens" podcast and it was all about how - when you go through something like what we've been going through - people often want/need the story to just have a neat and tidy end. Like - ok, you're all done with radiation, so yay! Onward and that's that! But that's not how it works - as we all know. Anyway, someone said, during her interview, this - and it just resonated so deeply for me and I thought I'd share: "When the ceiling caves in on you, you no longer have the privilege of assuming structural stability. You're forever, from that point forward, going to be living along fault lines."

That's what it feels like to me. I mean, I know that eventually I'll adjust but it will always be a thing - not ever in my past because I'll always have to pay attention in a new way - take meds, get mammograms, etc. - even after the "crisis treatment" stuff is behind me. I know you all know. My dear friend - whom I adore - said to me the other day "I cannot wait for this nightmare to be behind you forever." And I didn't have the heart to tell her that it will never ever be fully "behind" me because it has changed everything and now I have to always be aware. Is this ache something important or is it just a dumb ache? Is it aging or is it cancer? Etc. Anyway, people have really been stressing me out - expressing their desperate need for this nightmare to be over so they can get back to life with me as it was before.

I'm ok with adjusting to a new way of living. I wouldn't have chosen this - of course not - but since this is the deck of cards I've been dealt, what is there to do but accept it and grapple with it and allow it to be here - and also do the best I can to live as fully as possible, even within this new reality. Anyway, it seems some of my friends are not ok with adjusting to this. They want it to have an ending and they want me to get back to the "old me." I'm still me, deep down inside. I know you know what I'm saying here. But I am changed by what I"ve been through. I'm not better, per se, just different. Acutely aware of things I was only vaguely aware of before. It's all right here with me now. Anyway, I cannot go back. I cannot un-experience all of this. It just isn't a thing I can do. I think you all know what I mean.

Anyway, I came here to share these thoughts today. And again, this: "When the ceiling caves in on you, you no longer have the privilege of assuming structural stability. You're forever, from that point forward, going to be living along fault lines." It just makes so much sense to me.

Love you all

Jen

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Sep 27, 2021 04:33PM Valsc wrote:

Where is “everything happens” podcast episode that you are referring to? It sounds wonderful

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Sep 27, 2021 06:04PM tinkerbell65 wrote:

Hi to this group. I started radiation treatment 2 weeks ago, so I am almost halfway through. The good thing is that the hospital is one mile away, so driving there in the morning, parking, walking in, changing, getting treatment and then driving back home takes 30-40 minutes.

the bad - ITCHY! I am very fair-skinned, so I am already feeling a sunburn. I bought couple of camisoles online from Macy's (they kept sending me notices that I had a $30 credit) My surgery was a lumpectomy, right side, and the doctors did a reduction on the left and a lift (both sides) to even me out. That was in August. the incisions are still bothering me. But - since my former DD+'s are now between a C and D cup size, going out without a proper bra is now a possibility. It feels weird, a silky camisole under my shirt instead of an underwire bra, but I haven't found a bra that I can wear for more than a few hours without irritation.

Besides the itching and burning sensation, I am having trouble sleeping, yet I am exhausted. Slightly nauseated a few times. My son brought over some "edibles" THC and CBD, said it will help me settle down and sleep. I plan to give it a try tonight, I'll let you ladies know.

Oh - and I dread being told to ring the bell - not my thing, not at all. I like to fly under the radar.

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Sep 27, 2021 07:06PM Serendipity09 wrote:

Jen - thank you for sharing. Structural stability, or lack there of, is the best way to describe everything I feel on a daily basis. I'm always looking around me at the "fault lines", wondering "what's next?" I don't like the feeling. I was never like that until this beast re-entered my life.

Tinkerbell - I have 10 of 25 sessions left. Last night my chest became itchy and prickly which they said is expected at this point. For the most part I don't have much feeling in my breasts because I had a BMX, I do feel part of my scar is very sore. I hope you get some sleep tonight.


Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 28, 2021 12:43AM Esther01 wrote:

Oh Jen, I love your insights- wise and real and honest - So true that we are not able to "go back" to our old lives. Our circumstances have changed and there is only the option of moving forward. I know what you mean about friends wanting to celebrate the end of our radiation so things can "go back to normal" because radiation - or chemo - or surgery - somehow "cured" our cancer and we're all done now. Just as we slowly adapted to our new reality through each stage of our treatments, I think your friends will adapt to their beloved friend' Jen's new reality and bring lifelong love and support. It probably will just take time, listening and understanding. You have also made new lifelong friends who will always be there for you :) "Ouchy boo boo!" about the burns! Is it keeping you up at night or are you able to sleep? I love your chants and loving care of your scalp to encourage it to grow back your hair. When it does begin to grow back, and you see your first sign of new growth, please let us know so we can rejoice with you in the moment.

Ivy, I hope the itchiness and prickliness does not last long. Are you having any boosts in the remainder of your treatments? How is the lump doing? I'm praying so hard that it heals. Do you think you'll need to see your PS before you end rads? Or might it resolve before that happens?

Hi Valsc and Tinkerbell... Tinkerbell, congratulations on being almost halfway through. I'm glad you've joined us. This is an incredibly loving and supportive group, as you can already tell. I had the same type of surgery you did- lumpectomy with reduction and balancing. I'm sorry about the incisions being slow to heal and the itching, and occasional nausea. Our dear Jen has had way more than her share of that. So sorry [hugs], both. I had itching too, like Ivy. Was so hard not to scratch it. I'm sure sometimes I did without thinking about it. I'm glad your commute isn't bad but I'm laughing because half of my stress was over my long and insanely trafficky commute! What lotion(s) are they having you use? I'm glad you got to use your store credit for the camisoles. Love Macys! I finally went in person yesterday for the first time in over a year and bought my one and only pair of pants that FIT! Found them on Clearance and then bought an overpriced coffee just to savor being out and about.

Let us know how it goes with the edibles and if it helps you get some sleep. For some reason, it seems like my melatonin isn't working as well as it did before. I take about 7 mg before bed. Does anyone else use melatonin?

Love you all so much, will be thinking of you tomorrow!

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Sep 28, 2021 09:33AM MaineJen wrote:

More soon - but I wanted to leave the podcast info here (I have found it so eye opening, soothing, provocative, healing, reassuring, etc.): It's called "Everything Happens" by Kate Bowler https://katebowler.com/podcasts/ And the episode I hear that quote on is the interview with Suleika Jaouad: You are Not The Bad Thing (Part 2). There are 2 parts to that particular podcast. It is so engrossing and meaningful. Kate Bowler is a professor at the Duke School of Divinity - and she was diagnosed with cancer 4 years ago and all of the episodes are her interviewing really interesting authors/writers/actors/researchers/doctors, etc. - but it is all about the type of stuff I wrote above. About trying to make sense of life when you're facing such health issues like the ones we are all facing. It's a brilliantly done podcast. But that one episode - I found it very stirring.

More soon, ladies. Love you all.

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Sep 28, 2021 09:35AM MaineJen wrote:

Here is the precise episode where I heard that quote: https://katebowler.com/podcasts/suleika-jaouad-you...


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Sep 28, 2021 09:54AM Serendipity09 wrote:

Thanks Jen for sharing the link!

Esther my PS doesn't think it's anything to worry about. If it doesn't begin to ease 2-3 weeks after I finish rads, she'll see me. She will remove it, during my next surgery. Date not determined yet; maybe 6 months after rads or 9 months, possibly a year from my now. I have a feeling it's going to be next year if I have to take Xeloda.

Ladies off I go to...

Love to you all

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 28, 2021 02:45PM MaineJen wrote:

Hi, Tinkerbell65, thanks for sharing where you are and for joining us. You're almost half way through! I'm glad the commute doesn't tax you, on top of the radiation experience. That's so good. I am sad about your sunburn/itchy skin situation and that your incisions are still hurting you a bit. :( I, too, have had a lot of trouble sleeping and yet I'm exhausted. Also - I experienced nausea throughout radiation. :( I was told it is a more rare side effect, but of course, I always get the rare side effects, so lucky us, right? LOL. Anyway, I'm hoping you find some way to settle down and sleep a bit. I have found that, when I'm realllllllly struggling to sleep, taking one anti-anxiety pill called Lorazepam (1mg) helps calm me down a bit and I sleep a bit better. I also take 100mg (a minuscule dose) of gabapentin for hot flashes, because yikes I thought I'd spontaneously combust LOL. Anyway, you may want to ask your oncologist about the lorazepam. I don't like taking lots of meds - I'm very resistant to trying new medications. But since cancer treatment, I've been quite humbled and in need of help and if it helps, I say, do it. So - anyway, I'm so sad you, too, are struggling at night to get rest. I hope that the edibles help. And yes, flying under the radar - I'm with you. LOL

Ivy - yes, the "Beast" indeed. :( Also - omg you only have 10 sessions left! So maybe you're done with one now? Which makes it 9? Keep us posted as you wrap it up - I want to be there to be happy with and for you! I'm not even a week after my last treatment and I'm only now just realizing it's really over. LOL. Doing this week after week, day after day - it really is strange and awful and as Esther said, it's like a job no one wants but we have to have. Anyway, keep us posted about how you're doing as you enter that last stretch. XO

AND....ladies, I don't want to get too ahead of myself here....it's been 9.5 weeks since my last chemo infusion....but I THINK (not 100% sure) that I'm seeing some POSSIBLE tiny hairs on my head?!?!?!??! OMG. I'm trying not to get too excited. But before today, my scalp was just yukki and there were random tiny hairs that had hung on even through the poisonous trauma - and there was no order to the crazy scene on my head. Today I noticed, because I dared to peak, that there are tiny hairs all over my head. REALLY tiny, and they're there in a more orderly fashion than before. I'm not 100% sure what this means, but it MIGHT mean happy things are ahead on my head? I'll keep you posted. Let's not celebrate just yet LOL.

Love you all. Jude's home from school and he's been naughty (I heard from a teacher that he didn't turn in an assignment) so off I go to parent, in spite of the burning boob situation. LOL

Love you!

Jen


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Sep 28, 2021 03:25PM Mich21 wrote:

Ringing the bell for Jude had me in tears, so beautiful. And thank you for the quote from your podcast, I think it so well defines what I am thinking/feeling. <3 Also - the curly shampoo and conditioner are calling to the baby hair! Keep it up!!

Welcome to the group Tinkerbell and Valsc :) I hope you are both doing well this week. I'm so sorry for the pain and the itchiness everyone is going through. I think the itchiness is the worst!! I will mindlessly scratch, I have chicken pox scars to prove it! Ugh. I think I didn't scratch through this only because I kept myself COVERED in Calendula and Aquaphor. I was a oily mess for a month! lol.

Tinkerbell, I love Macy's! Esther and I had just been talking about it this weekend! I'm also jealous of your reduction, my surgeon said I couldn't see the plastic surgeon for a year after my radiation treatment. I found that Soma has the nicest softest sports bras, they're really wonderful and I did great with them during RADS. Now that I am a month post treatment, I have been wearing soft camisoles under my regular bra every now and then. It's been nice to have normalcy back in being able to wear a real bra again since June when I had surgery.

Ivy - You're so close to being done. I'm so excited for you :) I hope that lump starts behaving and stops bothering you!

((Hugs))

Dx 3/8/2021, LCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/8/2021 Lumpectomy: Left Radiation Therapy 8/3/2021 Whole-breast: Breast Hormonal Therapy 9/14/2021 Arimidex (anastrozole)
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Sep 28, 2021 11:24PM Esther01 wrote:

Michele, What a great idea! Putting the camisole *under* the bra. I never thought of that! Well, just as long as I don't forget and put the bra on the outside of my shirt and then leave the house. Haha!! LOL

Thanks for the recommendation of the Soma bras. I found two softies by Danskin that I absolutely loved during rads, in peach and black. On my final day of radiation, I accidentally put the bra back on without thinking, and now it has a circle of green marker that wouldn't come out. Naturally, it was the peach one. UGH. I'll have to check out the Soma bras now that I'm back in the market for them.

How is everyone doing this week? I know this is T O U G H stuff. Sending love and hugs out to all of you dear gals.O

Jen: "Spontaneously combust?" LOL! Oh, so sorry about that. I hope you were able to have a good talk with Jude without too much pain radiating from the breast. Tiny little hairs! WOW!!!! OK, I know.... I am celebrating early but I am doing a little happy dance in my heart for you- I'll celebrate again the next time you update us.

Ok, it's getting ridiculous. We have had drizzly, yucky gloomy doomy weather the past few days. Where I live, we have been totally socked in by a thick, intense cloud cover. I had to pour my coffee into a cheery floral teacup this morning and put on a cheery Youtube "ambience" video... I know... you all know me.... but it totally helped pull me out of the gloomies. When I finished the coffee this morning I suddenly felt joy at just being alive (no, there wasn't anything funny in the coffee LOL ). I remember the fear at diagnosis that surely I was about to die, and that didn't happen. I am still here 10 months later. Woohoo even though they were awfully hard 10 months. I don't know how many days I will be here but I'm grateful for this one day. I am grateful too for all of the special sharing here and the love and support we have extended to each other. You all are in my heart and very important to me; I would never have met you without having gone through this yucky season.

Ok, off to do the dishes. Major yucky.

Much love,

Sweet dreams and sleep well -

Esther





Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Sep 29, 2021 09:35AM MaineJen wrote:

So every day is a mixed bag, isn't it. On the one hand, Jude didn't turn in an assignment (and yes, that's now completed LOL), but on the other hand, he had the guts to speak up in class yesterday when a substitute teacher wasn't wearing her mask. He worries for his mom's safety and he's super focused on safety and health and wants to stay in school very badly - and he is very rules-oriented LOL - and so he told me that he found courage in his heart and he said "I don't mean to be rude, but please put on your mask, as we have a mask mandate in our school." Apparently she said "but the kids cannot hear me speak when I have a mask on." He didn't respond to that and just waited politely. She put on her mask and he said he felt safer again. What a brave kiddo! 12 years old - it's hard to speak up to any grown up, especially when they have power over you. But he did it politely and kindly and I'm just so proud! Also - how sweet. Anyway, to me that's the mixed bag of life - right there in a nutshell. Oops! I didn't really do the thing I meant to do AND in the same day, yes, I spoke up to keep myself f and other people safe. Or: yukki burned boob driving me crazy, but also: I get to connect with this amazing group of women because I have had to endure this yukki thing! As Esther says "I would never have met you without having gone through this yukki season."

Finding beauty and love and goodness even in a yukki, awful, painful time. That's on my mind a lot these days. I mean, the whole entire reason I am enduring all of this awful treatment that feels like absolute, true torture - is so I can live and share time with the people I love. That's what it's all about. And while I feel gross from the treatment, I don't want to miss out, which is why I've been trying so hard to stay present for my kids and family even when I feel like I'd rather hide in a hole and sleep for weeks - I mean, I don't want to miss my chance to connect with wonderful humans while I'm here. No matter how long or short my time is here. Even if I feel yukki.

And: Esther thanks for the early celebration. xo LOL When I say "tiny" hairs, I sure mean tiny LOL. I mean, there is just something new happening but it's so vague and not really clear and it clearly will take a long time before that new thing that's happening turns into a head of visible hair LOL. Still, it is hopeful that the poison didn't literally kill my hair follicles. I've worried about that, as you all know. It seemed to me perfectly reasonable if that happened during chemo because that poison was quite potent. I mean, yowzer. chemo is realllllllly scary, awful and powerful. Good that it kills cancer cells, but phew! I'm amazed I'm still standing after that. It fills me with wonder that some scientists figured out that we can fill our bodies with this poisonous stuff and it will feel like we are dying but we're not and awful things will happen but the cancer will be hunted down and annihilated and then somehow, some way, we'll recover over time and be alive. That is AMAZING to me. There were days when I was like "they'd better know what they're doing because I feel I will die today" and I wasn't being dramatic, I really have never felt that way before chemo. But I didn't die from it. And now, maybe new, tiny hairs?? WONDROUS! I will keep you posted. Thank God for Modern Medicine and for brilliant scientists who figure this crap out. I do hope that, 25 years from now, chemo is not a thing anymore because there is just some pill people take and boom, the cancer is gone. Because as brilliant as it all is, it feels very inhumane to endure. Anyway, I keep reminding myself that the treatments we're all having now are WAYYY better than the ones from even 25 years ago. So there's that.

Ok ladies. Putting on my compression glove to go for a walk on this cool, crisp autumn day. Leaves are really starting to turn. I'll try to find a photo of a tree on my street and upload it to share. I love how resourceful you are, Esther, watching your autumnal videos and looking after your own mental health with sounds and sights. You are just so wonderful.

You all are!

LOVE YOU ALL

Jen

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Sep 29, 2021 10:40AM Serendipity09 wrote:

Top of the morning to you all!

Jen - yes!! 9 to go including today. I cannot wait to get this done with. The burn it's driving me nuts. I went online looking for remedies to help with the burn and came across the website linked below. My friend has all but one of the ingredients to make this "magic potion." I'm going to go to and try to find the one that she's missing or the substitute and attempt it. I need some relief. I'll keep you posted. https://www.bloomremedies.co.uk/blogs/news/essenti...

Good for Jude! My son is the exact same way. Actually he got into a heated argument with one of his professors because of the same thing. My son told him in front of the class "well, if your mother had cancer you'd be wearing it wouldn't you? I'd appreciate you repeat protecting me so I can protect her". Right there the professor apologized and masked up. #proudmama

I found several nice bras from AnaOno. I'm having a hard time going braless, it definitely feels weird and a bit heavy. I feel like my implants are huge and want the PS to reduce them. I also suspect that the implant from the left side is the source for the lump I discussed earlier. I bought some very nice and soft camisoles at Kohls. I barely wear them though because I don't have much feeling on my breasts and the area of my chest that is burned is higher up.

Running late, gotta get to rads. More later...

Talk to you lovelies a bit later



Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 29, 2021 12:35PM MaineJen wrote:

Ivy: OMG I LOVE YOUR SON TOO! #proudmama indeed! I love that story! These boys! I love them. And ugh - the burn SUCKS, doesn't it? Yucky! And also: next time you read this I think you'll only have 8 sessions left - yay! xoxoxoxoxo

As promised, I saw this during my walk today.....

Tree turning:


xoxoxo

Jen

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Sep 29, 2021 07:39PM Serendipity09 wrote:

Yes Jen 8 to go!! It seems like an eternity away, but so did 25. I'm good with 8! Saw the RO today and he says everything on my x-rays is looking says were on course; he's hoping I'll continue to tolerate the fatigue, burnt skin, headaches, cough, and pain lol. What choice to I have. I don't want my radiation doses lowered so I'll just have "woman up." I know that this is temporary and all of you who have already finished were able to do it; I can too!

Love the picture; this time of year is just so beautiful!

I've become really good friends with a neighbor who has a 4 year old son. He reminds me of my son when he was that age. Tonight they came over and brought me a basketful of gifts, my birthday was yesterday. The little boy, Julien, was the highlight of my night. He was so happy to see me and to give me gifts. I may have some discomfort, but his smile and sweetness has overshadowed rads/cancer for today. And on that lovely note, I wish you all a wonderful night!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Sep 29, 2021 08:28PM MaineJen wrote:

Ivy! Happy Birthday to you! (one day late). GIANT HUGS!

And...Yay for only 8 left!

...How lovely that your neighbor brought you a basket of gifts. That is so sweet and I so get why little Julien lit up your night. Such a sweet thing. It's amazing to me how, no matter how much pain/discomfort/misery/fear we are experiencing, there is still sometimes sweetness and love and connection to relish and experience. Both things can happen and be true - at the same time. I've never been as aware of that mysterious complexity - as I have been since my diagnosis. On my worst, scariest chemo days - when I thought "omg I'm never going to make it" - I'd hear my kids chatting downstairs with their Dad - I wouldn't hear the words - just the musical sounds of their voices - and I'd be flooded with love and appreciation and gladness that I'm blessed enough to be their Mom and they're blessed enough to have Marshall as their Dad. I mean, omg I was so, so, so frightened and sick - but I still felt those things. Both things were true at the same time. I'm so glad you had a beautiful, sweet experience on the night of your bday - even during this rotten radiation regimen.

It IS so miserable - the fatigue, burns, coughs, headaches, pain, etc. - but you've got this. You're almost there. You've got this! Keep checking in. I'm rooting for you! We all are! Loads of love to you.

Jen


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Sep 30, 2021 10:20AM Serendipity09 wrote:

Thank you for the birthday wish Jen!

Julien really is a cutie. He really is a special little boy. He smiles for everything and loves to share.

The sound of my child's laugh was, and still is, my favorite sound, even at 21 there is still this childlike innocence to it. I love to hear all children laugh, it's such an infectious sound that just makes me happy.

Trying to keep my mind off this itchiness, OMG I'm going crazy. I realize most of you are only a short time out from finishing rads, but how is your skin? Did it recover and go back to how it was before? Probably too soon for most of you to answer that. I think Mich mentioned somewhere early on that her skin went back to normal.

Off I go...talk to you all later.

Have a great day!



Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Oct 1, 2021 12:47PM MaineJen wrote:

Ivy, I'm one week out from my last treatment (really!?!??! Where on earth did that time go? Seriously.) and I'm experiencing serious burn pain and blistering and now peeling and itching too. I called my RO yesterday to ask about how long this will go on for and if my boob will ever be normal again LOL. They said that everything I'm experiencing is "within the normal range" and it will take a few weeks for the side effects to subside. No one would say it would ever be the same again LOL. But I would just love the pain and itching and grossness to go away. Right now I have one very, very tan boob and one very, very pale one LOL. Oy! I don't know if this helps or makes things worse. Sorry! Sending love,.

Jen

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Oct 1, 2021 02:58PM Serendipity09 wrote:

Thanks Jen! It does help. I'm sorry you're going through it though. My RO told me he expects that my skin will go back to normal; I'm not as optimistic. My skin usually gives me trouble relating to scars and freckling etc, but that's ok. I met a very nice lady this morning when I went to rads who said she had had rads some 20 years ago and that her skin went back to being normal. So there's hope for us yet!

Have a great Friday!

Much love

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Oct 1, 2021 04:41PM Esther01 wrote:

HAPPY BIRTHDAY, IVY! I hope you are treated to a Birthday Week from family and friends. You deserve it on top of everything you're going through. Keep celebrating YOU.

Much love,

Esther

Grateful to Jesus, that His love finally broke through to me. "With one touch, You just rolled away the stone that held my heart," - Lyrics by Keith Green, " 7 weeks of Radiation including supraclavicular nodes. Dx 12/2020, IDC, Stage IIB, 5/11 nodes, ER+/PR+, HER2- Hormonal Therapy 12/19/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 6/8/2021 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left) Radiation Therapy 8/3/2021 Whole-breast: Breast, Lymph nodes
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Oct 1, 2021 10:11PM Serendipity09 wrote:

Thank you Esther! <3

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 4/1/2020 AC + T (Taxol) Surgery 9/17/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Carboplatin (Paraplatin)
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Oct 2, 2021 02:30PM MaineJen wrote:

Ivy: You're so close to being done now! When is your last day? Is it this coming week? Am I getting ahead of myself? Maybe I am?

Who else is in the final stretch? I want to be sure we're all with you all through this!

Love,

Jen

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