Starting Radiation August 2021 - Anyone else?
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Serendipity: German Chocolate and Doritos - you are my kind of girl! LOL! OMG that is exactly how I would indulge. Always end on a salty note, I say! And Doritos are my favorite!
xoAnd Jasmine2717 - ice cream and Oreos before dinner! You go girl! Love it! Sometimes we just HAVE to do these things! It sounds like that was a seriously stressful experience yesterday so I'm really glad you got to keep the fuzzy robe and blanket! XOXOXOX Keep us posted about your start date when you get it. And yes, our lives are so full of so many curve balls, it's really something, isn't it! Let's just say we're all quite curvy! LOL! (that's a stretch but what the heck, right? xo)
And Michele - he said "the needle is huge!"??!?!?!? OMG!!! I know he was joking but yikes! I would have burst into tears as well! It's a good thing he got you those flowers...oyyyyy!!! xoxoxo And it sounds like you've got a lot you're dealing with, on top of everything - re: deliberately putting yourself into menopause. Oy, being a woman at all different stages is really a thing, isn't it. I'm 99% sure I'm in menopause, but just to make sure I am (and for other important reasons), after radiation, they're going to remove my ovaries and tubes. So then they'll be 100% sure I'm not going to have a period, LOL, and then once all surgeries are done, apparently I'll start taking anti-estrogen pills, whatever they are. So we're on quite the ride..."roller coaster" seems like the best description, even if it is overused.
Sending you giant hugs full of love. Esther - my heart broke for the woman on the stretcher - when I read your note, I totally understood why you wept.
I just really get it. It is heartbreaking. I'll pray for her too. Poor lady. Also: thanks for your reassuring words. I"m so glad your sister has kept on you to keep on walking. You're right, we'll have time (God willing, of course) to detox after all of this is done. My husband keeps reminding me of that and to not be so hard on myself. I just feel so impatient. I'm so sick of feeling one side effect or another, you know? It all feels endless.I don't feel well, ever. Like ever. I know you all know. It's not going to go on forever, but it often feels that way. And today I walked in to radiation, feeling super low and unhappy, and said "please turn off the music while I'm in here," And they did -they didn't seem to happy about it - but seriously? It was super loud! - and it was like a disco not a radiation place! I mean, I was fuming on the inside but trying to maintain my composure on the outside because, after all, these people are in control of serious rays zapping me and I don't want them feeling frazzled or hostile towards me just because I don't want their music on. Anyway, it sounds like you are juggling a lot too - with your Mom and family and radiation and just everything. It's rough with so many balls in the air at once. Your family is very blessed to have you. That's one thing I know for sure. xoI'm struggling with the "saying no" thing now. I have too much going on, and while I am very blessed to have these dear friends ( a couple) who love me/us, they just can't seem to believe me when I say "no." They live a few states away and have asked, repeatedly, to drive up to come visit - since my diagnosis. They have asked and asked and asked. I've tried to be gentle - I love them SO MUCH - they are SO wonderful. I've explained that I just don't have it in me right now to host. I've explained that as much as I love them - and I do - I just need space and once I recover more, I'll be SO thrilled to have them here or go visit them or whatever. I've explained every which way I know how that I'm just not my "normal" self - during chemo there were days when I couldn't get out of bed, couldn't walk, couldn't talk I was so sick or low energy or whatever. I'm really upset right now - on top of being upset about everything. I just got an email saying "guess what!? we've rented a place 20 minutes from your house and we're coming for a weekend in a few weeks - no pressure but we'd love to visit with you and the family." No pressure? They have literally never come to Maine to visit for any other reason than to be with us. So they basically have decided to not take no for an answer. Because how, how on earth can I say "have a great trip but I can't see you at all."? I cannot do that. And so I'm feeling - I don't know. I mean, I know they love me. I know it. But it's really upsetting to me on some level. I'm sure it'll be fine. But I cannot host. I'll just have to go to them or something. I'll still be between radiation appointments - not done yet - when they are here. I don't know how I'll be feeling by then. I know I will not have had even one moment to start recovering in any way. It's so - I don't know. I just can't believe they're doing this. I guess they have this idea that I don't know what's best for me and that they think that seeing them is going to be good and healing. I'm not saying it wouldn't be wonderful to see them. I love them. But I guess they decided for me what's best for me and it feels - well - upsetting. What would you all do? Am I a bad person for being upset? I feel a bit unseen and unheard here. I am sure I'm overreacting, but in just a few months I've been through so much, I'm just flattened entirely - and this feels - well - not good. Thoughts? If you think I'm being mean or overreacting or unfair, please feel free to tell me.
Love to all.
Jen
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Jasmine, you are too cute. I would think the same thing! Are they going to bill me for the robe and blanket? I certainly hope they do not. I can't imagine... You should get them as a gift for all of your troubles and all your patience with them trying to get you set up.
Ok Michele, bacon wrapped pickles??? That sounds amazing!! I have to try that. I know the two weeks after we finish are also important to keep slathering. I hope that your skin starts recovering very quickly. I'm so sorry about your first hormone injection. Sounds like you're on the 3 month plan. I was on the monthly shot, called Zolodex. Anyway, as you all know, my eyes are tightly shut during anything even remotely stressful, so I never saw the needle. Well, one of the nurses let the cat out of the bag the very first month! She laughingly told me, "That needle is so big!!" I replied, "Why did you just tell me that? That makes it worse. My eyes are closed. I never would have known about it." Another nurse did the same thing and mentioned how big it is. I told them to stop telling us that.
Hey, please make sure they give you the freezing numbing cream first. The nurse would spray it so long that her own fingers felt frozen. What I ALSO did was I'd bring a little lunch cooler with me with an icepack inside, and I'd put it on my stomach before the nurse came in to give me the shot. So, I was extra frozen and it helped. Also, make sure they hold pressure to the bandaid for a minute before letting go. Usually it won't bleed but one time it did and I didn't find out til later in the shower when I took off the bandaid and saw all this blood. I thought it was still bleeding! Wasn't, was just the bandaid getting wet. I will be lifting you up as you do those injections. I stopped mine - long story- I"m working with my doctor and not taking out any more estrogen. Cancer takes advantage of hormonal imbalance, so I'm going to balance them instead of removing them. My doc is raising my low progesterone for starters. I think 6 months of zolodex injections on top of tamoxifen may have pushed me into menopause. I want my periods back. I know.. I"m always the weird kid in the room.
Ivy, I like BeeCure but it's expensive (the bottles are only 1 oz each) so I save it for when I'm especially itchy. For everyday, I slather on Boiron Calendula Cream from Amazon. I just grab the BeeCure when I'm feeling a bit uncomfortable and want to nip it in the bud. So far I'm doing well. Today was 20 out of 33. My back is actually more tan/faintly red than my front! That is where the ray comes out. They told me I'd need to lotion there, and I slather on that entire area, but it doesn't stop me from turning red.
Jen, thank you so much for joining me in lifting up that lady on the stretcher. Today the nurse wheeled her in even before I went in, and I heard him speaking Spanish so I used Google translate to find a comforting phrase for her. I practiced it and got a chance to whisper it near her as I went into the radiation room. Her eyes are always closed, but today there was a doll tucked in next to her on the gurney. I was happy to see the doll. It means someone is comforting her. I cried again today. She looks a little like my aunt (who has passed on). I am trusting God for her healing and I have to just leave it there.
Ok, I can't believe your friends aren't hearing you or respecting your wishes, especially now that you are dealing with cancer. I would be SOOOOO upset. I don't even know that I would have seen them. That's a tough one. I would want to say, "I'm so sorry that you spent the money to be near me at a time that I will not be able to see you at all. Is it possible you could reschedule for a few months from now?" We never know how our friends and loved ones are going to react to our cancer. That is definitely a new one! Awww I'm so sorry. That's so awkward. Maybe they are so attached to you that they are afraid of losing you to this cancer, not realizing you are going to pull through and live for a long, long, long time
Sending hugs your way and I pray it all works out so you do not feel forced to do something you do not want to do. Oh, and for some reason, for the last few days my breath holds have been harder. I think I've been doing so much deep breathing that I'm increasing my lung capacity and my tech says to take shallower breaths so the machine doesn't turn off. It's been frustrating. Also makes the setup take longer. Plus I'm thinking about that lady outside on the gurney. Ugh!!! I can't wait until these rads are over. We will need to celebrate when ALL of us are done. xoxoxo
Sleep well dear friends,
Love,
Esther
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I can relate to your feelings a lot. I want to scream NOOOO More all the time. None of it is a 'walk in the park' I'm sorry you are down please remember one day we will be able to look back on these days and say I did it and I'm done!
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Hi Ladies!
Many of you have listed some of the side effects I have been feeling, thank you! Thought I was freaking out a bit. My radiated breast sometimes hurts in various areas, it is bearable, I guess I am just glad to know it is "normal" along with the nausea and the FATIGUE! That one is really hard to deal with, not used to taking naps but...sometimes I just gotta close my eyes for a few minutes.
I have read that some of you talk about having to holding your breath? I don't have to do that, wonder what the reason behind that is?
Maine Jen - AI's are Aromatase Inhibitors. These are the drugs that are supposed to stop the production of estrogen/progesterone in our bodies. Arimidex also known as Anastrozole is the most common. I tried taking it the last time around, I had horrible side effects. The Dr.'s would like me to try it again, I am in a little different place now so they are thinking it may not be as bad. I hope they are right.
Mich21 - Hoping the Arimidex works well for you, it is supposed to be THE drug to go to for hormone positive cancer. If you have side effects the doc may prescribe or give you options to offset those.
Esther01-
LindaD3 - Had a wonderful visit with my husband over the past weekend. He came to town to get supplies for the bakery on Tuesday and stayed the night. I was so tired, I was trying to fight it to spend some time with him. It ended up being us cuddling on the couch while I slept for a bit. LOL. It was nice to him have him here.
Michelle1215 - I think the whole cancer ordeal is very emotional and maddening! One day at a time! My eyes are weepy very often. Of course where I am I can blame it on allergies lol! But seriously we all need to be able to vent and not keep these feelings inside of us, it helps to get them out. This is the perfect group for that, everyone here is amazing!
We have a 3 day weekend!!! A day off of radiation - woo hoo! Hang in there gals - we got this! I wish we could all celebrate together when this is over. Long work day time for some dinner and bed!
Thinking of you all!
xoxo
Marla
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Thanks Michelle and Marla! xoxoxox So wonderful that we can support each other through this.
Marla, the bakery sounds wonderful! I'm so glad you had some special time with your husband, even if you weren't fully awake. And that Jon Bon Jovi photo, LOL! THank you!! That was perfect! Of course now I have that song in my head. Who else in our group is approaching the halfway point? Anyone in the home stretch? How about just starting? I think a few are beginning this week? Jen, how are you holding up? I know you said you went from chatty to quiet with the techs. I hope they have STOPPED the music. You could always mention it to the RO at your weekly meeting but it sounds like you got your message across. Hey, don't forget to keep picking up the free samples from the nurse. They have one I like called California Baby Calendula cream. It's probably not that different from the calendula cream by Boiron which is my mainstay, but I like the way it smells.
Marla, I showed that photo to my sister, telling her how special you all have become to me, and she said, "Oh how nice. Def Leppard!" Hahaha!
Yep, lots of odd sensations and sometimes temporary burning sensation. The breathing is for when it's a left sided cancer. I haven't had fatigue yet but that might be because I didn't go through chemo like most of you amazing friends did. I was nervous about my IMD keeping me on all these vitamins/supplements (she added turmeric and CoQ10 right before I started rads)but found the research that says it is synergistic with rads and will help reduce side effects. I feel like I could open a vitamin shoppe at this point. Our spice rack is now a supplement rack.
For those of us getting our armpit zapped, I found a little wedge to tuck under my arm for side sleeping at night. It helps keep the arm away from the armpit. And I am looking pretty funny walking the mall with left hand on hip. We will always know how to identify fellow patients getting axillary radiation.
I think this experience does make us a lot more emotional. I keep reminding myself to take it one day at a time. Before you know it, we'll be done and moving forward, probably continuing to support each other and having reunions for a long time since we have become so close.
How is everyone else doing this week? Any plans for Labor Day weekend as we celebrate NO rads on Monday?
Love,
Esther
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Ladies, I just stopped by to tell you I love you all and miss you all and wish I had the energy to keep up with every post right now but I'm totally worn out and way past done. I had a covid booster and a flu shot today and radiation and omg my son just said "Mom, come outside - let's play pass!" (baseball) and I was like "um, not tonight sweetie." (inside I'm feeling like I could collapse). Does anyone from my generation remember "Calgon, Take Me Away!!" - well, that's me right now. LOL.
Esther - I have total chemo brain on top of everything else (it's really not going away yet - oy!) so if I haven't said congrats on being half-way done, I'm so sorry! I may have, but you are half way? Wherever you are, I'm so happy you have so much of this crap behind you already! And to everyone: I can't even keep track of what day I'm on, LOL, but here's to all of us getting through this whole thing.
Today I heard the radiation ladies turn off the super loud music and whisper to each other when they saw me enter the waiting area, so I pulled myself together and when they called me in I took a breath and said - as kindly and graciously as I could "it's REALLY not personal. I'm sure you're all truly wonderful people - please just try to remember I'm super stressed, overtired, overdone and really, I hate being half naked and bald in this giant spaceship machine and having to hold my breath to protect my heart from danger - and I'm sure the music would be great if I wasn't a cancer patient feeling like crap, but because I'm feeling so awful, music during radiation just freaks me out and make me more scared." I really tried to be nice, because, well, it's always the better choice, right? Anyway, they seemed softer and more gentle with me after that. So I think they got it.
Marla - thanks for the explanation.
So I guess I will be taking AI's - but I'm definitely going to wait on thinking about the details of all of that for tonight LOL. at first I was angry about taking a break from radiation for Labor Day because I was like "that will postpone the end of this crap!" but then I realized "OMG I get 3 days off!" and now I'm glad.Sorry I'm not responding more specifically each of you right now. Esther - your words about maybe my friends are afraid they're going to lose me hit me really hard. You are probably right. That softened me up a bit. I was really worked up!
I'll try to catch up more this weekend if I can. For now, please just know I send you all my love and giant hugs and you are such a wonderful group of amazing women. So grateful I have you all here to be with through this crazy awful experience. I'll be holding you all in my heart tonight and tomorrow and every day.
xoxoxo
Jen
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Hi Marlade - Holding your breath is for patients with cancer in the left breast. Holding your breath moves your breast farther away from your heart. Women with cancer in the right breast don't typically do the breath holds. I am till taking the hormone blockers. Anastrozole kicked my butt. I believe you are right that it is the most common drug prescribed but there are other drugs available. I am now on Letrozole with minor side effects or at least they are much easier to deal with. The worst for me is head sweats. With the least amount of exertion my head looks like a Saturday Night Live skit with water poring down down my face. I always carry cold drinking water and now I carry a washrag or a box of kleenex.
Hi ladies. I finished radiation therapy October 31, 2018 so now I'm in the 5 year follow-up with 3D Diagnostic Mammograms and Breast MRI (for heterogeneously dense breasts). My doctor started me on Anastrozole but we changed to Letrozole (both for post menopausal women) and I am handling it pretty well. I haven't read all the posts but I occasionally drop in and encourage those still in treatment to not be afraid to stand up for yourself. If you are not comfortable with anything that is happening, please let the technicians and your RO know. Unfortunately, quite often "protocol" means what is easiest for them and not what is best for your mental and emotional well being.
MainJen - I am so happy to hear you advocated for yourself. Excess noise gets to a lot of us.
Best wishes to all of you.
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Jen - I hope you feel better. Glad you said something to them about the music. The music was on today during my practice session and it was not loud at all, it was at a very comfortable level for me. For a minute I thought they'd raise it up, but they didn't. I thought about you and said a prayer for you and all of us.
Esther - I was wondering about a pillow or wedge for my armpit, but am going to wait as my armpit is mostly numb after lymph node removal during my BMX. I'm hoping I won't feel much during rads. I already sleep with a breast pillow as I'm a side sleeper and not liking the way my implants feel. Thought I'd be a little more used to them by now
Nothing too exciting planned for the weekend.There's a Labor Day Festival going on this weekend right down the road, may go to that with a neighbor.Marlade - I have to hold my breath and my cancer is on the right side. I start rads on Tuesday and will ask my nurse; she explained to me why last Friday during mapping and again today during my practice session, but I was so overwhelmed I don't remember what was said, I want to say she said something about keeping things in place, but not quite sure. During my initial consultation last year, my RO mentioned possible damage to my lung because of where my tumor was/is, maybe that's what it is?! For me, it hasn't;t been a problem, but ask me after I start on Tuesday, might be a complete different story. I hope not!
Wishing you all a peaceful night!
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Hello ladies,
My apologies, I tried reading the posts but I’m on my phone and dependent on reading glasses so I gave up until I can get to my iPad or laptop tomorrow. Congrats Esther on being almost done!!
In the past couple days pain and redness has increased. Yesterday I realized I have a raw spot under my breast where my sports bra band rubs. But the worst is that my entire nipple is covered in small blisters. I believe it’s because I had treason my stomach and they had my breast resting on a piece of foam. The dr said that burns and issues can be worse in skin fold areas, I think my whole breast resting on my nipple on foam counts as a fold area lol. Motrin mostly helps but tonight I took a leftover pain pill from surgery. The constant pain and burning isn’t unmanageable but it’s wearing on me for sure. I’m excited to spend the entire 3 day weekend resting.
I start Anastrozole in 2.5 weeks. I hope I don’t suffer too much on it but I’m not really sure what to look out for? I’ve heard it can cause joint pain. The great “Unknownn” of cancer has been so hard. All the tests and procedures we have been through and worries about what if and what may happen. It’s overwhelming. In that regard I’m like an ostrich- I’m going to bury my head in the sand and hope for the the best! Lol.
Jen - I feel you so much on the friend’s visit! Maybe set expectations before they come “Guys, I’m so happy that you’ll be in town but I’ll be doing treatments and I’m not sure how I’ll be feeling or my energy level. I’d definitely like to be able to see you at least once for dinner while you’re in town. I’m hoping we can make that happen” For me, that’d be easier than saying no once they were in town already
Good night everyone- love and hugs!
Michele
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Mich21 - hoping you are feel better today. I'm hoping to avoid some of the discomfort you are experiencing being that my breast does not have much feeling. I realize that could be a bad thing as well as I may not be aware of something that may be going on due to no sensation. UGH!! All of this is so much! I'm happy that you are done and thank you all for sharing your experience, thank you to all of you! I'm making notes of things I will be watching for, it really is daunting! God willing in about a month and half I can put this behind me.
Marlade - I realize it's a complete different treatment, but I was told last month that after rads I'll be doing Xeloda. I was on it after my BMX last year and to say that I had a hard time on it is an understatement. I was in so much pain and so sick, it was awful. I felt worse on the Xeloda than I did on ACT & carbo. I also feel like you in that I'm in a different place right now, so I'm hoping to tolerate it better this time around. I'm hoping that what I experienced on madame X was caused by residual side effects of the infusion chemo. My MO knows I'm terrified of going back on it and will stop if I feel the way I did before as that was no way to live, and I say that lightly. I am trying not to think about it too much; just want to get rads over with.
It appears autumn has started here. The weather has been cool and dreary, but I'm loving the relief from the heat and humidity. I went to a glass blowing class on Thursday evening and we made blown glass pumpkins. I have it out and I love it! I just might have to pull out an autumn scented candle. I'll wait to bring out the fall decor until next week.
Have a great day everyone!
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Michele, I hope the rest you've had this weekend is helping with the pain? Yikes. I'm so sad you're hurting. And you're so right: "the great unknown of cancer is so hard."
I found this AMAAAAZING podcast (cannot even remember how I found it) this week. It's called "Everything Happens" with Kate Bowler. I've listened to a few really good episodes. Here is the summary: "Life isn't always bright and shiny, as Kate Bowler knows. Kate is a young mother, writer and professor, who, at age 35, was suddenly diagnosed with State 4 cancer. In warm, insightful, often funny conversations, Kate talks with people about what they've learned in dark times. Kate teaches at Duke Divinity School and is author of "Everything Happens for a Reason (and other lies I've loved)."
This podcast has been a balm. It has made me laugh and cry and think. She is so wise and so full of love and she's still kicking, which I love. Today I've been listening to the one called "Debunking 'everything happens for a reason' with Kelly Corrigan. from June 22. There are four seasons and she's brilliant. She's also done a 15 min ted talk called "Everything Happens for a reason and other lies I've loved" - I watched it and wept. In a good way. I strongly recommend all of this for anyone who wants to feel like someone "gets it." She really "gets it."
Shoot. I'll come back with more later. I'm in the middle of making pasta for the daughter and chicken for the boy - because even at these older ages, they don't eat the same stuff. Realllllly?!?!? LOL
Love you all. More soon.
Jen
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Hi ladies, Did you all have a nice weekend?
Ivy, your first day today! How did it go? I hope it wasn't too bad. It will go faster as you get started, because they will get better at helping you get into position more quickly. I pray you will at least be comfortable as you go through this. Remember too that you can ask for a blanket! I had to ask for a blanket today, and it helped. Did you end up going to the Labor Day festival? We went to a local one at our town square. In past years I'd be in line for the vanilla ice cream with baklava pieces mixed in. This year I think I sounded like an old person, wandering past the booths muttering about the lack of grass-fed, non-rbst, hormone-free offerings. HAHA. I skipped the baklava but was oh, so tempted! It's worse when they put up an enormous picture of the dessert you're trying to resist. I swear that thing was following me around the market.
And, you made glass-blown pumpkins?? WOW! What color did you make? I have been eyeing those shiny glass pumpkins at Home Goods and can't decide what color to get. Never thought of blowing my own glass. Hahaha it probably wouldn't be pumpkin-shaped after I was done with it. Mine would be deformed or all angular like one of those balloon animals the balloon man puts together when they go table to table at Mexican restaurants for the kids. LOL Not sure what to call the guy who does that? Balloonman? They're not clowns. They are just wearing about 100 deflated balloons in a variety of colors. Anyway, you have creative talent! Good on you. Your pumpkin must be lovely, especially with the candle you mentioned. I love this fall harvest time of year! The coolness is helping with the hot flashes, for sure. I'm glad it's helping all of us.
Michele, how is your pain level now that you had a few days off? Are they giving you something special for the blistering? I did hear that we can continue having issues for a few weeks post-radiation. I hope it heals as quickly as possible.
Speaking of AIs, I have been on 20 mg of tamoxifen since January, except for a few months off when they thought my irregular spotting was caused by it. I am going to ask my MO if I can take 10 mg instead. I have to find that study again where I read about that. I'd rather take less of it if it might help me have less issues down the road.
Hey Jen, thanks for the Kate Bowler podcast! I may check it out this week on my drive. I'm laughing at your kids' dinner requests. That reminds me of the commercial with the kids where one says, "I want pizza!" and one says, "I want a bucket of chicken!" What child can eat a whole bucket of chicken? I need my own bucket to gain some weight back. Thursday is weigh day and I've got to keep myself fattened up so I don't get anxious seeing the scale slide down too far into the 10_'s. I literally look like I just came off a deserted island. At night I can feel all my bones, especially on my side so I try not to feel them with my hands. My arms are like twigs and my rear end is in some other zip code. I'm running out of pants that will stay up without me rolling them a few times at the waist. I did buy new pants after the pandemic (well, before delta) and both pairs are too loose already. I am NOT buying any more pants. I figure if I keep them long enough, they'll fit eventually. I just have to make myself eat more and I'm trying to eat healthy.
Oh, and to make eating harder, I had this freak accident today while eating my first bite of a beautiful salad. I bit my tongue right down the middle and it bled! It swelled right up like a marshmallow. Can't make this stuff up!
Well, I hope you all got through today's radiation OK. We made another one! How are you all holding up??
Ok, off to tackle the dishes from the meal that wasn't ...
Love to all, xoxoxox
Esther
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And that's why I avoid salads! They're dangerous!! Your poor tongue Esther
Pain wise, this weekend was horrible. I was taking Motrin and Tylenol but nothing was taking the edge off of the pain. I did my best to push through, but on Monday I gave in. I called the on-call Dr in tears and asked for something better for pain. I was just worn out from being in constant pain with little sleep or rest all weekend. She advised me to go to the ER. To be honest, that really made me angry. There was nothing that I needed from the ER and I wasn't about to spend $150 and sit for hours just to be told that. I just took more Motrin and powered through until Tuesday.
Tuesday I was able to reach my RO's nurse who sent in a prescription for Motrin 800mg as well as some burn cream with a numbing gel.(I have skin peeling on my areola). Today I'm feeling better, thank goodness! Today is exactly 2 weeks post-treatment, so I am ready for the starting to feel better/normal stage to kick in LoL.
Today is clear liquids only and this afternoon I have to drink like 5 gallons of liquid to prep for tomorrow's colonoscopy. Yay! haha.
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Hi there!
Esther - I did start yesterday! It wasn't bad at all, I'm glad they do the practice sessions so I knew what to expect and I was already more comfortable going in for #2 today. I listen to all the noises trying to figure out when it is that I'm being zapped. I'm sure I have the face of a little child in the dark, eyes wide open, lol. The nurses are all very nice and attentive. I feel ok, they told me to anticipate starting to feel fatigued by visit #12. Hopefully, it won't be too bad, if at all. They gave me a cream, miaderm, that I'm to use 2-3 times a day, it has calendula in it and smells really nice.
You have good restraint, I would not have been able to resist the ice cream with baklava, I LOVE baklava!!
I did not go to the festival over the weekend, I bought my son and I some new mattresses and needed to get my home in order, which then led to rearranging bedroom furniture, and in my case a full blown makeover of my bedroom. I splurged and bought myself a mattress I should've bought while in chemo, it's amazing. Hoping I'll start getting a little more sleep.
I'm excited to start decorating for autumn, going to do that this weekend.
The blown glass workshop was so much fun. I'd love to do it again. Had it not been for the instructor guiding my every move, my pumpkin would probably just be a flat piece of colorful glass. I am very proud of it!
Hoping you all have a wonderful evening!
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Ivy (my chemo brain is remembering correctly that you are Ivy, Serendipity, right? Or have I screwed that up??? LOL) - that glass is GORGEOUS and it is my absolute favorite form of art, next to ceramics. Glass blowing! Wait, you MADE that blue pumpkin? All by yourself??? Holy crap you're talented! That's AMAAAAZING!!! It is SO PRETTY. And you started radiation? I super duper hope you don't have any symptoms/side effects for a while - or ever. Thinking of you! xo
Michele - go to the ER!?!??!?!?!? I, too, would have been so angry. You poor thing! That's horrendous!!! You poor thing you had to power through? OMG my blood is boiling for you! That's terrible. Thank God you're feeling better now, but still. What a rotten way to treat you! Today is the colonoscopy, right? Hope it goes smoothly and hasn't been to horrible (the prep, that is). xo
Esther: Your poor tongue! OMG! Are you ok now???! And I hope you can eat more - comfortably - soon!??! You poor thing! What kinds of things can you eat that won't hurt? Sending you a big hug.
I've been swamped with work and totally fatigued and overwhelmed by symptoms from radiation in the past few days, to be honest. Holy crap I cannot believe I have to keep going back for a few more weeks. I'm sure you all feel the same way. I'm coughing a bit now (I remember they told me "a tiny bit of your lung may be damaged and you may start coughing as a result" - um, yeah), and my arm is killing me and I have a sunburned left clavicle area and my boob feels like someone threw a baseball at it and... a dear neighbor has offered to take me there and back again today, and I agreed to it, even though I hate being taken places because of the strange social aspect when you feel super crappy. But yesterday I almost fell asleep at the wheel, so there's that. Don't want any other additional problems, LOL.
So sorry I've not been staying on top of everyone's posts. I'll try again soon. I'm just entirely flattened by everything and it's hard to keep up.
HUGE HUGS to all.
Hang in there, ladies! We've got this! (I think??) xo
Jen
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Jen - You are correct, I'm Ivy, lol. Thank you! I did make the pumpkin, but it was in a workshop that I went to last week and was closely monitored. I absolutely love it!
I did start rads; today was day 3. I'm sad to report that unfortunately, I am experiencing some side effects already. I thought it would be at least another week, but nope. Fatigue, more then usual, has set in, the scar on my breast looks irritated (can't feel anything because it's numb), my skin is already sunburnish (I just made that word up, lol), my armpit feels sunburned and like there's a baseball in it, my stomach is upset, I have a piercing pain on my shoulder blade (the exit point), I could go on, but I won't. I am not liking this at all, and again, it's only day 3! UGH!! I wish we didn't have to do this! I honestly pray for all of us every time I'm told to hold my breath.
Hoping you (and everyone) feel better! {Hugs}
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Ivy, since I'm seeing this now, I want to reply asap or I'll lose track again. Glad I got it right, sheesh! LOL. And I am so amazed about the glass pumpkin, truly. If you came to my house you would see beautiful, colorful glass items in lots of places, as I just LOVE LOVE LOVE colorful glass artwork. But honestly, it never occurred to me to try to create the glass art myself! I mean, wow! Have you been doing this sort of thing for a while or was this your first workshop ever? And if it was, WOW. And if you've been doing it for a while, that is SUPER COOL TOO! We took the kids, a few years ago, after relocating to Maine/USA from Germany, to the Sandwich Glass Museum in Sandwich, MA. OMG I was entirely entranced by the artwork there. We watched someone blow glass. It was just incredible. Anyway, SO COOL!
And I'm super sad to hear you're already so miserable from radiation. That SUCKS. I hate it so much and I cannot believe we all have to endure this. Today I was like "someone please remind me how radiating my boob and arm/nodes/neck is actually HELPING me and not hurting me!??!!" LOL. I mean, seriously. The fatigue is so real. It's different, for me, than when I had fatigue from chemo. Hard to explain. I tried to think today about what it feels like. I said to my husband "you know how you feel after a lonnnng day of work, then you've been with the kids all evening and you finally tuck them in, and then you find yourself watching the news and then you turn off the news and start reading and you cannot keep your eyes open but you try to stay awake to finish the page you're on? That feeling - right there - is what I feel like all day the whole time." And it seems like sleep doesn't help now. I don't quite get how they're gonna keep doing this to me. LOL. Or to any of us. But I guess we're stuck. So I'm right here for you, Ivy, feeling it with you. Again: wish we were all in waiting rooms together, and then there with one another physically after we all come out and then I wish we could all just be together through it all - in person - but I'll take this, since that's literally geographically impossible! LOLOLOL.
Sending love your way, Ivy. And to everyone.
Jen
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Serendipity09: I'm so sorry to hear about your side effects from rads. Are they using the AlignRT on you? You had mentioned your facility had it. The exit point burns are on my list of questions to discuss with my RO later this month at my consultation with her. My chemo treatment is different than yours was, but I have only experienced fatigue on the day of chemo after eight infusions. How would you compare your chemo fatigue, if any, to your rads fatigue? Sorry to pepper you with questions and I appreciate any info you can share.
On a positive note, I love your pumpkin! I am the farthest thing there is from crafty, so I am very impressed by your workmanship.
Hope you have a nice evening and thank you for letting me pick your brain.
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Swimgal - I did not get the AlignRT, different group of physicians
.With the AC aka as the red devil, I felt fatigue and sick (nausea, body/head aches, very weak and loss of taste/appetite) the next day and for 12 days after, I always had my energy and appetite back by the 13th day after treatment, to have to go back in on the 14th day to start all over again. Taxol was more tolerable for me. I wasn't as achy and the fatigue was bearable that I could still get things done around the house, take the dog out for a short walk and not have to stop for a break going up stairs. Every 3 weeks I would get Carbo in addition to the Taxol, and that would hit me like a brick within 2 hours and would last 3/4 days, same SE's as AC. I honestly thought chemo would've been much worse; it was by no means fun, but very doable. The absolute worst SE for me throughout all of my treat was the constipation, it was AWEFUL! (sorry if TMI) Hope some of this answers your questions. I hope and pray your SE's are minimal and tolerable.
Thanks for the compliments on the pumpkin, I had never done it before, but Im thinking about taking classes beginning January. I really enjoyed doing it and would love to explore it some more.
Thanks Jen! I wish we could all together, cheering each other on, but I promise, you are all in my thoughts and prayer daily and will continue to be. I'm happy to have you all, even if it is online.
Wising you all a restful night!
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You are all SO amazing. I admire and treasure each of you. Ivy, not only is that shiny pumpkin GORGEOUS, but you are also a good photographer! It's such a pretty shot. I think the classes sound like a great idea. Every time I think of something crafty I want to learn how to do, I talk myself out of taking the time to do it. You have inspired me!
Ivy, I just hate it that you are already having pain from the radiation after only a few days. My heart aches for you.That's so awful. I wish this was not necessary. How many rads do you have to do? I pray that it eases off and gets easier for you and that they give you something to get your skin through this . I, too, wish we did NOT have to do this. I pray for you - everyone in our little group - whenever I'm in there. You are never far from my thoughts, even those who haven't chimed in for a bit. I know this is a very rough time for all of us. Today was #25 of 33 for me. I don't have any fatigue yet but my whole left side is very very very very very very very T A N, including the upper left quadrant of my back where the rays come out.
I am still getting twice weekly IV vitamin C drips which I know help a ton but so few of my friends are getting them or even know about them yet. I feel sad every time I go into the IV clinic because I can't bring my new friends in with me. Today I asked the rads tech about it and she said, "Oh, yes, we do have patients who say IV vitamin C helps them with fatigue." Anyway, I pray that someone else is helped by it. If anyone wants some info on IVC, just reach out to me via PM. My oncologist's face when I first mentioned it... he thought Vitamin C is always an "antioxidant,' and that's not the case. At high levels (ex. 50g, 100g) C becomes pro-oxidative and stresses cancer cells while strengthening our immune system. I will probably get it once a month for the rest of my life because this cancer adventure sure is getting expensive! I was telling Jen, with all these daily doctor appointments we have, the doctor bills also keep rolling in!
Oh and my tongue is healing. I just can't drink any hot liquids yet. I still cannot believe I did that!Hang in there, friends. xoxoxox
Much love,
Esther
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I had my radiation treatments 5 years ago. I had something called hypofractionated radiation therapy, which is higher dose for a shorter time period. I think I had 16 treatments and 3 more boost doses to tumor bed. Yes, you want to stretch those arm and shoulder muscles bc you can get shoulder pain from having you arm back and in the plaster of paris mold. I did not have any skin burning or blistering, but I was very tan and red where my bra band hit. I also used an organic skin lotion every night on my breast called Erbaviva. I went without a bra when I was at home. I would have a weird metallic taste in my mouth a couple hours after my treatment. My rad techs were super nice, and always asked if I wanted a warm towel on me for comfort. Good luck with your therapy:) It will be over before you know it!
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Happy Friday!!!
Esther - I agree with you, everyone on here is amazing, a blessing to me!
Thanks, I'm glad I could inspire you. During the covid shutdown I had to find things to entertain me, I decided to start painting, wasn't that good at it; I did diamond art for a while and I became bored with it; I baked a lot and started getting chunkier, lol, I still bake and actually just bought a decorating kit for frosting cakes/cupcakes; I'll do that when the weather is a little cooler. I really want to pursue the glass blowing.
Today has been a bad day, I can barely move my head and shoulder. It was very difficult to get into position for rads today to the point of tears. The techs were so empathetic and felt helpless. I've taken Tylenol and it hasn't helped. I really don't want to resort to pain meds, but might have to. My RO does not want me going to PT during rads and told me to continue the stretching at home, which I've always done. He says that PT could move tissue around resulting in the rads possibly not zapping what/where it's supposed to; makes sense.
YAY for #25, 7 more to go!! You got this!! Super happy that your tongue is on the mend!
Ubershop - I started getting that metallic taste yesterday, I mentioned it to my techs this morning. I think the positing of the arms is what is causing the pain, I pray it eases up. Do you have any side effects from rads at this point and time? My techs always offer me a warm blanket, but I turn them down as I normally get a hot flash, lol. They are very sweet.
I'm very happy to have the weekend off, a well-deserved break for all of us.
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Ivy, that is such a great creative outlet. Having something fun to look forward to can be such a stress reliever. I have noticed with dismay how sensitive and emotional I am becoming with each daily zap. The traffic on the drive has gotten brutal. There's always a 4 mile backup on the freeway where all lanes are at a stop and everyone is getting off at my exit. By the time I pull into the parking lot, my nerves are so frayed. I don't think I can use the freeway anymore, so now it will take me an hour just to get there.
Ugh, I'm so sorry Ivy that the pain was bad again today, and that even getting into position was so difficult. I am sometimes near the point of tears with way less pain than you are dealing with right now. You are amazing. I understand about not wanting to take strong pain relievers. I pray, pray pray that it eases and they find a way forward for you that is more comfortable. I thought of you all today during my zaps and am holding you in my heart, as Jen would say.
In the middle of the night last night, while turning onto my side, the nipple pain began. It has not gone away. I'm truly astonished I got this far without pain. It only hurts when I move. I pray to get through the next 7 days, 5 of which are boosts, and that we all get through this. Lifting up each of you in this crazy adventure we are living through.
Ubershop7, thank you for sharing your experience with us and about the organic lotion. It's funny, I have to ask for a blanket every day. You would think that a half naked woman lying with her arms over her head in a freezing room might need a blanket. I didn't really need one at first though due to living in Hot Flash City, so I guess this means I am past the worst of the hot flashes.
I am officially switching my lymphedema PT to one closer to home at my own hospital. I want to learn how to assist my own fluid drainage. At this rate, they probably won't start me until after my rads are done anyway.
Well, have to rush lunch for my mother and run to the IV suite because Fridays are my EDTA chelation day. Can't wait to watch Love Boat or take a nap in the recliner. They switched the IVs so now it runs 1 1/2 hours instead of one hour so I may have time for a longer nap. Hope they can wake me!
A weekend for all of us without rads! Hurray!
Much love, xoxo
Esther
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Serendipity09, Sorry to hear you were not able to get the AlignRT. Thanks for sharing your experiences. It sounds like you have dealt with a lot through this trial none of us want to be involved with. I like to think of myself as a strong woman and then I read what all of you are going through and I realize I'm not so strong after all. You are!
I haven't come across anyone who has used the AlignRT on this site, so maybe I'll try to look elsewhere to get some feedback.
Blessings to all!
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@Serendipity09 Hi, I haven't had any long term effects from the radiation. Every now and then I will have some shooting pains, which I talked to my doctor about. She thinks it is just pain from my nerves growing back from the surgery, so I can't really attribute it to the rads.
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swimgal- Nothing about bc is easy, as you very well know. It takes its toll physically and mentally and so I believe we are all strong, regardless of diagnosis, treatments and surgeries. The fact that you wonderful ladies are here, going through what you're going through and cheering me and each other on is huge. We have found a way to lift each other through this and I am truly grateful for each and everyone of you.
Thank you ubershop!
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Hello from Maine, my dears! I cannot seem to catch a break but I want you to know I'm thinking of you all! It is Saturday and none of us have to be getting zapped today! HOORAYYYY!!!! OMG. I am SO glad about this!
Esther, I'm heartbroken to read that you're having pain. I'm going to be thinking of you so much today and I hope that your infusion yesterday helped with any part of all of this mess.
Ivy: I hope you are doing ok today? Ouch this sucks so much - physically, emotionally, spiritually, etc. OUCH. but also: your head and neck.
OMG I want this all to be better for you. I hope you find relief with meds or whatever you can. Sending gentle hugs.And - I don't even know who wrote this, since I'm reading quickly to catch up (sorry!) before I get interrupted by a kid or something, but yikes. I didn't even think to stop my lymphedema PT during radiation. I get the idea, but my PT seems to think we should see each other regularly throughout! Oyyyyyy. To be honest, her gentle massaging has been such a relief to me - I mean SUCH a relief - I dread the thought of hearing I should postpone it. But now that this topic has been raised here, I'll be asking my RO for sure. It makes sense, but still.
Glad your tongue is better, Esther. xoxoxox
And that whole back-and-forth about chemo and the side effects. Ugh chemo. I'm still experiencing so many side effects from chemo - but I'm not sure if they're made worse again by radiation or if they're still just lingering because it all sucks or what. LOL. Today I went for a walk and I ran into a neighbor who told me she had breast cancer and the whole same treatment 11 years ago. I asked her "when did you hair even start to return?" and I said "sorry, don't mean to focus on the shallow thing, but it's making me nuts not having hair." and she said, sweetly, "it's a morale thing. It's not shallow. When your hair starts to grow back, it lifts your spirits and boosts morale." That was so reassuring - I have felt so badly about yearning for my hair when I know this is all saving my life. Anyway, she said it's different for everyone, but it took about 3 months after chemo ended and it started after radiation was over. So that's pretty much what I've expected. I'll wait until the end of October before I begin to totally freak. LOL
Love you all so much. I hope you can get some relief from pain killers or time with loved ones or from some rest and non-rads days or from some yummy treats or from some crafting or whatever gives you relief.
And today is 9-11. So I'm reflecting a lot on the value of the time we all have here - and on what matters. And what matters - in my mind - is the love we share, the genuine connections we make with one another - even and especially across the boundaries of geographic distance and time and difference. Wherever you beautiful women are right now, I'm grateful for the connection with each of you - and for the group as a whole.
Love,
Jen
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Happy Sunday my beautiful wonderful friends! I have some great news - Colonoscopy was so easy! They put me to sleep so completely pain free and no polyps, cancer or ulcers! My gosh it was wonderful to have good news from a test!! Also, Saturday I woke up with energy and virtually PAIN FREE!!! Same for today! The fatigue has gone & the burn cream worked miracles! My entire areola peeled and was so painful, it's now rough in patches with dried skin but the spots with new skin are so soft. I have a couple tender spots but not even enough that I take a Tylenol! Fatigue has gone and now I'm just tan. Today is day 16ish after treatment so there is a light ahead!!
Ivy and Esther, I am so sorry you're having pain. I wish I could hug you (very lightly and from the side). Ivy I was also red from the beginning & the RO even commented about people not usually being red so soon. It's scary to be told that because it feels like something is wrong and the last thing we need right now is more stress!!
Your pumpkin is gorgeous and now I want to take a glass blowing class! But wow!! I have a serious love for pumpkins in decorating- Fall is my favorite time of year
Jen - You are such a ray of sunshine. I love your posts, you make me smile from ear to ear. How lucky I am I. All this to have found such a beautiful circle of women. Love you all dearly and I hope your weekend is amazing.
Side note - Apple TV is streaming a Broadway musical called Come From Away it's absolutely beautiful. I highly recommend it!!0 -
Good morning!!
Saturday and Sunday was god! Stiffness in the neck and shoulder, but no pain. Praying that it stays that way as I get ready to go in.
Jen- my PT was for stretching and cording and very aggressive, I'm thinking that if your RO didn't tell you to halt if for now, you're good.
Mich - it was a bit scary to see that right off the bat, but I'm not going to read into it cause I know I'll drive myself crazy. I'm sure you, and all of you, can relate. Glad that you are pain free!
I decided to put my fall decor out. It's my favorite season as well. It gives my home that cozy feeling. I love it!
Well my lovelies, off to rads I go. I hope you all have great day and I'll check in later this evening. Positive thoughts, hugs and prayers to all of you.
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((Hugs)) Ivy - glad you’re feeling better and hopefully today went well.
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