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  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited February 2016

    congrats to those finishing and to maximom for getting your port out!

    Thanks for the commiseration on the emotions. The folks at my radiation center are great, and I don't feel exposed on the table. I think it's just now really hitting me how unfair it all is and how much it sucks. Losing my hair (it's growing back, but it was long before and it'll take forever to get back there), losing a boob and the scarring, gaining 30 pounds, the pain and discomfort, losng all my fitness, not getting to dance for months... It all just sucks. A reasonable trade off for getting to live, but it sucks. And then a couple acquaintances died recently and it occurs to me that could have been me. And I haven't done enough with my life yet. Something I plan to remedy!

    Thank God today was my last whole breast treatment, and on to boosts. I have a huge patch of raw skin under my arm. For those of you who had boosts, did your energy improve right away, or not until after you were all done?

  • Brimton
    Brimton Member Posts: 87
    edited February 2016
    Hi everyone,
    Yeah on getting the port out and beginning your last week. Sorry, hard for me to remember everyone's name. One to week five for me. Chest has more red dots. I'm keeping the cream on three times per day. My chest was clearing up over the weekend but now is pretty pinky.
    I agree about the rads being emotional. My family doesn't really want to talk about it. My daughter was in from out of town. She went to see the machine and techs in action. Afterward she didn't really want to talk about it. I feel alone on this journey at times. It strange sometimes I want people to be concerned and and reassure me other times I just don't want to talk about it at all.
    I get x rays everyday for alinement. Then the treatment.200 centigrays per day for a total of 5,000. I hope that is enough. I worry that I did something or didn't do something and it will come back. RO says a majority of relapses occur in the first two years. So I'm trying to think positive but live each day.
  • Andraxo
    Andraxo Member Posts: 410
    edited February 2016

    Just back from my first treatment. Was weird to have a machine that close to my face....kept thinking it was going to melt my glasses or eyeballs - ridiculous, I know. I asked the tech to explain everything at the end since I had no idea I was getting 11 bolus with the thing they drape over me. I'll ask about my dosage/grays on Thursday when I see the RO. The gown/robe they gave me last week to take home and bring back every tx is HUGE...could seriously fit someone 2-3x my size....even the waist ties hit my pubic area, not anywhere near my waist. When I pointed it out to the tech she said I can use my own robe. Yay! It will be nice to have something that is mine and more comfortable (mentally, more than physically), which is significant.

    Kate - I hope you are feeling better!

    With you Brimton....about sometimes feeling alone in this. Aside from my sweet partner and maybe 2 friends, I think my family and everyone else has pretty much forgotten about me (OK, aside from my mom who calls weekly...but only talks to me for a few minutes). Same for me in wanting to be reassured but at the same time I often don't want to talk about it anyway. So thankful all of you are here!

    Twnkltoz - It didn't hit me until after chemo ended how much it all sucks. Delayed reaction like you. The past few days have been good emotionally, after feeling so crappy/down since last chemo, but with rads starting today we'll see how long that lasts.

    On a good note, I ran 8.5 miles on Saturday (it was the best I've felt on a run in over 2 months)....which was 3.5 weeks after my last of 6 chemos. I ran another 5 miles today, but my legs felt awful and I was having trouble breathing. I just can't recover from workouts as fast as I did before chemo. The edema in my legs has improved starting last Friday - maybe I turned a corner? - but I'm also not standing at work at my stand-up computer workstation.

    oh...and I was stopped in a market today by a woman who works there telling me how much she liked my head and that I looked so cute. Glad I must not look cancer-y! She was surprised when I told her I didn't really have a choice because it was from chemo, and she congratulated me for being done with it. Still miss my hair which was to the middle of my back, but I'm rocking the bald pretty well all things considered.

    Now I'm off to my first night class for Spanish....

  • KateB79
    KateB79 Member Posts: 747
    edited February 2016

    Twinkltoz: "I think it's just now really hitting me how unfair it all is and how much it sucks. Losing my hair (it's growing back, but it was long before and it'll take forever to get back there), losing a boob and the scarring, gaining 30 pounds, the pain and discomfort, losing all my fitness, not getting to dance for months... It all just sucks. A reasonable trade off for getting to live, but it sucks."

    YES. That's it entirely; you nailed it.

    I think it takes many, many months for us to even realize what's happening, you know?

    I really appreciate all of your well wishes. My fever is down today and I'm feeling a bit better. Back to the couch! :)

    P.S. Three cheers for not looking cancery!

  • Brimton
    Brimton Member Posts: 87
    edited March 2016
    I forgot to tell you all. My latest visual is all of us holding hands in a big circle. I hope it doesn't sound too corny...
  • Kimmer33
    Kimmer33 Member Posts: 386
    edited March 2016

    wow andra, can we see a pic of your henna?

    I always feel like the machine is going to drop on me, strange, but i wonder if it ever has.

    11 down, just 5 more to go - skin hasnt changed at all, may be a bit tanned but i feel great!


  • DiDel
    DiDel Member Posts: 1,329
    edited March 2016

    Mary I love your twin story! My mother found out when she was 8 months pregnant and was panicked that they weren't prepared 4 girls in my family. My skin is bad too I'm worried about the next 13 tx. What rx cream are you using? My RO gave me nothing.

    The way I'm positioned the machine is not even an inch from my face and I had to sneeze as soon as they walked out and I screamed ...I GOTTA SNEEZE..MOVE THIS THING and they lifted it and we all laughed . .my whole body sneezes ya know..

    I am putting on so much but so nervous about what it's gonna look like. I swear by Friday it was like raw meat


  • MissV123
    MissV123 Member Posts: 79
    edited March 2016

    KateB79, and Mdoc524, hope you wake up tomorrow feeling better....and JerseyGirl2 .Tomorrow is your Big Day ! Ring that bell girlfriend !

    Brimton, I know the feeling..... sometimes I feel very alone but then someone will come along and do something so special.....it restores my faith .

    This disease is so unfair, and I feel like it will Always be there.....nothing will ever be the same. I will always be waiting for the next strike.......Im sick and tired of laying on the cold table half naked everyday....Thank God I only have 5 boosts left..Tessio and I are on the same schedule.... I have decided to take a few days off work after my last boost to get my head,and my body together....and prepare for my visit with MO to discuss medications.....and or ovary removal....ugggggg...this will never end......

    But, as I have said before , this is my place to vent and share with some of the most wonderful people ever, you have helped me thru some very dark times.....

    Oh and I'm getting a cabbage tomorrow cause the burning is getting unreal.....

    Hey Twnkltoz, how did you like the Miaderm? Lot less greasy right?

    Vickirides, hang in there....get rest whenever you can....seriously, this is so important...feel better...

    Sleep well my Ladies.......will check in again soon......

  • Musosgirl
    Musosgirl Member Posts: 387
    edited March 2016
    Someone mentioned melting eyes and I have that exact thought every time! They are frying my boob but my concern is more for my eyes during the actual treatment. Then I have to get dressed and fabric on my skin reminds what is really getting cooked.

    I am depressed. I can tell. I hate radiation. As much as chemo sucked--this is bringing me down much more emotionally.

    My mom and I did have a laugh today though. I told her about cabbage leaves and that I want to try them. She and my sister were going to Sam's though and they never have heads of anything. Probably could get shredded cabbage in bulk. I told her cole slaw is probably not what they have in mind but it would make a great parody sketch! "they told me to use cabbage leaves but all I had was this cole slaw" as the model sexily smears the chunky goo all over her chest...

    Anyone else think of some great SNL type moments we face on this journey?
  • Kokomo26
    Kokomo26 Member Posts: 64
    edited July 2016

    Hi Everyone. Have been reading all the posts (thanks for sharing) over the last two weeks and now my turn has arrived. I start on Wednesday and feeling so emotional, scared and anxious about what is to come :( Really nervous about left side radiation! Only able to sleep 2-3 hours at a time...saving my Ativan for treatment days. Drove over the border on Sat. to pick up the Miaderm with my girls for an outing. Also stocked up on Glaxal Cream, Aloe Gel, Boiron Calendula, a cabbage, corn starch, soft t shirts and cami, greek yogurt, water....What have I forgotten?

    KATE...sorry you got the flu but glad you are on the mend now How are you coping with the snorkel breathing while sick? MARY...and everyone else dealing with skin issues...sending healing wishes your way. KIMMER33...which creams are you using? SEEKINGSERENITY.....that is a favorite prayer of mine too. DIDEL....the machine is so close to your face! What??? Is that what it is like? I am still trying to psych myself up for the snorkel breathing. Like I said before "nervous'!

    Thanks for letting me air my concerns. Wishing everyone a restful night and successful week ahead.


  • sailorgirl15
    sailorgirl15 Member Posts: 114
    edited March 2016

    Lovely ladies - hang in there! My last (of 35) rads is tomorrow!! Woohoo! I am so ready to be done with this. I will say that if you have an issue, make sure you complain loudly! I was feeling nausea 6 weeks after chemo and well into rads and I finally made a big stink about it and they admitted that with whole breast rads it can hit the stomach and esophagus!!!! So, they rewrote the program and I did the 7 boosts to get a break. I felt better!

    Then I went back to the last 5 whole breast and the nausea came back!! So, when they say it's not from rads, I'd be skeptical. I never threw up but my stomach was always upset. I have an iron stomach and high pain tolerance, so when I felt lousy for several weeks, I decided to make that known! I lost about 12 pounds, which is a lot when you are post menopausal! My chest/shoulder blade area also was burnt and hurt like hell. I used all the creams I could and the candula cream (which is in miaderm) helped. One thing that I used was coconut oil - my RO swore by it. He also finally prescribed a steroid cream for the itching, which is in full force as the burnt skin heals.

    You are all amazing and it will soon be over!! Hugs to all! I will be celebrating tomorrow night!! I plan on taking a spring break vacationweek and will not start the arimidex until I get back! Now, if only my hair would start growing faster!

  • Peabrain
    Peabrain Member Posts: 268
    edited March 2016

    @Brimton- I love the all holding hands! It's like the start of a folk dance.

    @Kate - I am glad you're feeling better!

    @Jerseygirl - we made it! Have a good last day tomorrow.

    Tomorrow is my last radiation zap. Then ovary removal on Wednesday. Then start feeling better. Actually, this past week I finally felt like I am going to move past all this. So we bought an Aistream trailer and brought it home today. As soon as I am able, we're headed out for a road trip. Who knows where we'll end up. Just have to be back to start work in April.image

  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited March 2016

    @peabrain that is so fun! Love the picture. We're going on a cruise May 1 for our big celebration.

    @missv the miaderm is really nice, for sure. I put on aquaphor after my appointment when getting dressed, because I feel like all that petroleum makes a protective layer. I'm almost through the tube though and won't buy it again.

    When I'm all done, I'll probably have all kinds of leftover cream. I'll probably donate it to the next person! Isn't it fun to make plans for when we're all done? I'm setting up all kinds of things I always wanted to do, plus I'm going to convert my blog to a book. Countdown to getting ME back!

  • Moondust
    Moondust Member Posts: 510
    edited March 2016

    Peabrain, I love the photo! What fun it will be.

    Sailorgirl, hooray for last day coming up!

    JerseyGirl, same for you. hooray!

    For whoever was asking about total cGy of treatment, mine is 6000 including boosts.

    I would rather have a radiation treatment than a root canal.

    Today I talked to the RO about doing chemo after rads. I had originally decided to skip it, but have since been mulling it over, reading more things, listening to expert podcasts, etc, and I think I should have it (based on several factors including onco score of 26). He said I was not crazy for wanting to do it. I told him I've been taking the path of least resistance for too long, and sometimes the correct decision is not the easy one. So that will be coming up for me.

  • phoebe58
    phoebe58 Member Posts: 193
    edited March 2016

    marijen - I had 1.8 Grays [I think you meant centi-grays DiDel or you would be sooo glow in the dark!!] daily x 28 days for a just over 50 total - a slower gentler approach than the Canadian 16 [even though I am Canadian] because I had diep reconstruction. Now two weeks later I am still pinky and darker tan but it's fading, and the small but irritating raw chafed armpit and then underboob have started healing too and just are peeling a little. Still stretching, as it is tight. I wasn't a big fan of the Miaderm scent either Moondust -- rather oddly stale --, but I used a variety and believe it all helped keep the skin supple.

  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited March 2016

    i actually like the scent of miaderm!

  • Andraxo
    Andraxo Member Posts: 410
    edited March 2016

    KIm - getting the henna on my head today, so I'll post a pic later :)

    rough night...kept thinking about the radiation....and how much this sucks. I have cancer. Me. Still unbelievable, yet it's true.

    - xo

  • Tessio
    Tessio Member Posts: 46
    edited March 2016

    I love your visual Brimton. I think about you ladies a lot too during the zaps. Protect us, protect us, thank you, thank you wonderful giant kitchen aide machine. Was that your reference Kate?

    4 more left to go! The doctor prescribed silvadene cream yesterday for the underarm area. It is an open wound right now. I'll let you know if it works. I asked how long till my skin heals and dr said, it is already healing...... Ok, thanks.

  • 6feetover
    6feetover Member Posts: 320
    edited March 2016

    Andra: woo-hoo to henna!

    I'd been coloring my own hair with body art-quality henna for almost 5 years when I was diagnosed last summer. I miss my hair! It'd achieved a lovely deep cherry cola color with bright ruby "highlights" (i.e., greys, hehehe). The 5 or so hours I spent doing the roots each month was SO worth it for that color. I'd never gotten so many compliments on my hair before in my life! So stoked for you!

  • 6feetover
    6feetover Member Posts: 320
    edited March 2016

    Pea: that rocks! LOVE Airstreams!!!

  • 6feetover
    6feetover Member Posts: 320
    edited March 2016

    all: I started week #4 of my 6 weeks yesterday. Looks like the final week will consist of boosts (they call it a "cone" here). I'll be lying on my back vs. lying prone, which is how I've been positioned thus far. Not looking forward to that, as my back/neck/shoulders/hips are in agony already. *Sigh* The cancer center here recommends/offers samples of Udderly Smooth cream and something called Difinsa53. I looked up the latter online - holy $$. So I keep asking for samples. Muahahahaha! I work on the waiting room's community puzzle every day to try to help my horribly neuropathic fingers, and also to try to regain some of what I've lost to "chemo brain." Blows!!! I feel like 48 going on 80...

  • Kokomo26
    Kokomo26 Member Posts: 64
    edited July 2016

    Hi Andraxo...I had a rough night too. All I can think about is the radiation as well...was trying to listen to meditation tapes on line but nothing worked...also took 5 mg melatonin but no luck helping. I see you are left as well....do you use the snorkel? What time do you go for treatment? My first is at 4;30 tomorrow and we are to have snow storm as well.

    Tessio....will try to remember your chant tomorrow. I will be thinking of all you brave ladies who have or are currently going through this....I need to get a grip myself.

  • Twnkltoz
    Twnkltoz Member Posts: 215
    edited March 2016

    @adarkadept we have a puzzle at our place, too, and I always make a bee-line to it! I look forward to it every day, and that helps. It's like a little reward for going to treatment. I'm worried the current one won't be finished before I am!

  • VickiRides
    VickiRides Member Posts: 211
    edited March 2016

    Peabrain - Congrats on the trailer. We do a lot of camping in our trailer and I absolutely love it! I hope you're planning a great road trip.

    I met with my RO yesterday. She took a quick look at my skin, said everything looks great, and then we spent 10 minutes talking about hair length and color. I love her. I slept well last night; I think this cold is on its way out. Yay!

  • KateB79
    KateB79 Member Posts: 747
    edited March 2016

    It sounds like so, so many of us are in the same boat, emotionally, with this. I LOVE the image of all of us in a circle, holding hands. Imagine the energy!

    It's official: I have the flu, which is working its way into bronchitis. I just downed the first horse pill (augmentin) and am heading back to bed. I don't remember the last time I was sick enough for antibiotics. . . . Maybe 2002? LEAVE ME ALONE, VIRUSES AND BACTERIA. To make matters worse, I strained an intercostal muscle (not on the radiated side, thank goodness) with a dramatic coughing fit last night. Insult, meet injury.

    In other news, one corner of my MX scar is starting to look weird, almost scabby. I don't really know how else to phrase it. I made a conscious decision not to freak out when I discovered it today, and will ask someone to look at it tomorrow.

    I fully own the Kitchen Aid reference. I stood and gazed at the machine and had that thought again this morning!

    No problems breathing with the snorkel, even with this ick. Thank goodness.

    Sending lots of love to all of you, from here in the snowy tundra. But guess what? Next week, it's supposed to be 60 degrees! Woo hoo!

  • Andraxo
    Andraxo Member Posts: 410
    edited March 2016

    Dorothy26 and Kate - Snorkel? my cancer is left too and they just tell me to breathe normally while being radiated. I am positioned tilted to the right though...a little on my right side - supposedly to keep my heart shifted more right so they miss it. I even asked multiple times at my first appt yesterday about gated breathing or any breathing patterns and they said no, wasn't needed, just breathe normally. hmmmm. Makes me concerned. Of course I tried to breathe as shallow as I could, which was hard, and then I'd suck in a huge breath in-between when the machine changed positions.

    Dorothy26 - I have been taking 5mg melatonin to sleep for the past 3 years. It helps me fall asleep but I don't stay asleep...unless I take time released melatonin but then it makes me groggy. The night sweats aren't helping either. You'd think I'd be used to it by now...been a bad sleeper for the past 4 years and before that I've always been a light sleeper.

    When did everyone start slathering on heavy lotion at night? I'm using the Miaderm twice daily, since a few days before radiation started, but I really don't want to slather on the Aquaphor. It's basically vaseline....which is gross to me. I may try something else in the Cerave line for night...a thick cream based product, not petrolatum based.

    OK - so I'm just back from getting the henna pattern on my baldy head...and I love it!! pics below. Might do it again in 2 weeks. Of course, now I'll stand out even more in public, but at least now it's because I'm wearing beautiful art! It will look very different when all the henna flakes off in a day...then it will be an orange-brown stain in the same pattern. I'll try to take more pics in a couple of days to show the difference.

    image

    image

    image

  • VickiRides
    VickiRides Member Posts: 211
    edited March 2016

    Andraxo - I love the henna pattern! Rock that beautiful bald head!!

  • Duzy
    Duzy Member Posts: 134
    edited March 2016

    Andraxo - I love it. It looks amazing. I am also having radiation on the left side and was told to breath normal. They also have me tilted to the right. They told me they determine which type you receive during the Sim setup. I am down to 7 regular and 5 boosts. I have used the aquaphor since day one at night and aloe during the day. It is very thick. Hoping my skin holds up. I am pretty cooked

    We have had such a mild winter and then 2 storms in 2 weeks and then 60 next week. Gotta love Michigan weather

    Hope everyone has a good rest of the week. Will be thinking good thoughts for everyon


  • Brimton
    Brimton Member Posts: 87
    edited March 2016

    Hi Everyone:

    Week five! I asked about being set up for my sim for boosts today tech cant tell me ask RO. I like to know ahead of time that I will be laying down longer. Unlike today when they said "This will be a longer film today." through the speaker as I'm laying there. UGH

    Sailor CONGRATS! MissV I am doing better today i guess.... Peabrain I LOVE THE TRAILER!! You look wonderful with the big smile. Enjoy your trip. KateB79 So sorry about the flu. I had a bad cold right before surgery so I feel your pain. Coughing and had to go on meds too. I hope you get better fast. You use a snorkel while breathing? Andrao and Duzzy If you have a small heart, the RO told me you don't have to hold your breath. The breath holding basically raises your breast and chest wall away from your heart. I have to take a breath, which they measured during my sim, and hold it. The machine I now call Simon zaps me and then I let my breath out. The techs tell me when to hold and when to breath out. The techs told me to practice over the weekend before my treatment started. I can hold my breath for a minute. Not that I need to but I can. Its usually about 30 sec. I LOVE YOUR HENNA HEAD! I didn't have to have chemo but if I had I would have definitely done that. I also totally get the "Its me" feeling. Adarkadopt I cannot believe how expensive everything is. I got a EOB for rads yesterday my share for 1 week $1,600. HOLY CRAP. Good luck with boosts. I too look at the puzzel they have. But usually have no time to work on it as they call me in pretty quick. Tessio Thanks for the compliment on the holding hands. Glad you don't think its corny. I hope the underarm heals fast. Moon dust Good luck with chemo I will be thinking positive thoughts nearer to the time. You are throwing everything at this cancer monster I know you will prev-ale. Musosgirl Here is my SNL skit. My daughter got, a long time ago, a t shirt that says employee of the month with a big sun on the back. So picture the SNL stage with the back of the t shirt showing. Then as someone (not me no way) turns around and their left boob is hanging out a slit cut int he shirt. Now THERE is an employee of the month. LOL Mdoc How is it going? love the twin story.

  • Suz-Q
    Suz-Q Member Posts: 205
    edited March 2016

    Beautiful Andraxo!!

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