August 2015 Chemo Group
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This is totally shallow, but . . . I'm sad about my eyebrows and lashes. I thought they'd hold on. No such luck.
I can't wait to rebuild. And eat sushi. In fact, eating sushi is just about at the top of my priority list.
Still trying to decide about the timing of my prophylactic MX--my instinct is to wait until at least May, just because I'm so beat down from chemo. I suppose it'll come to me in a dream. . . if I ever sleep again. Damn you, hot flashes!
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I've been away from the computer for a few days and it feels like there's lots to catch up on.
Notdoneyet and gooseberry - HAPPY BIRTHDAY!
MsBrompton - Congratulations on your surgery.
KateB79 - I am with you on the eyebrow/eyelash sadness, although it's getting easier. I miss sushi, too.
Last week's treatment was moved to Wednesday because of Thanksgiving. I walked the Turkey Day 5K on Thursday morning, enjoyed a Thanksgiving dinner that I didn't have to cook and then went to a movie in the evening. Had a workout Friday morning ... then BAM! exhaustion set in as I sat down to watch Mockingjay Part 2 with my daughter. So I finished up the weekend with lots of naps.
My daughter had last week off of school so she did all the Christmas decorating. Yay!
And I am finally starting to see fine white hairs all over my head. I think it's finally growing!!
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My eyebrows and lashes are going to KateB79. Its weird to be almost done with this "worst part" and NOW I start to look all sickly. I swear my face is a little swollen too... So I look like the kid off the movie Powder and seem to get a lot more stares. Pasty white is my normal, natural color.
But whatever, One more and I am riding off into the sunset... well after those 2 or so weeks I am knocked on my butt... but after that... sunset, me, and riding off... for sure
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I still haven't decided for sure on a surgery date (I've never been this flaky in my life), but I HAVE decided on a couple of other things.
1. Couch-to-5k program. I was a weightlifter before and never much of a runner, but I'm imagining all kinds of possibilities. . . . If anyone has any good suggestions for how to get started, I'm all for them. I used to say that I'd only run if something was after me. My, how things change.
2. Pilates. I do yoga now, and I'm intrigued! Same deal re: suggestions.
3. Planning a vacation. Friends of ours have a house on the New England coast, and they've invited us to come and stay with them for a week in July. . . I can't wait.
4. Get back to writing, music, and art. I've been uncreative through treatment, and it's something that's bothered me. I think it's time to get that fire going again.
5. Plan the tattoo. I have ideas. I haven't had any ink in years (and the last one is actually a funny, yet horrible, story), but I'm feeling the urge. . . Anyone else getting inked?
gooseberry, I look like Powder, too. It's actually kind of funny, given that I was a teenager in the 90s.
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YES to the ink, but too far out to have given it a lot of serious planning attention. The week I got diagnosed I almost went out and got FUCK CANCER in huge letters up my forearm but I started treatment so fast I couldn't do it (and in retrospect probably ok, fuck cancer yes, maybe not the huge font I wanted at that moment). I am going to have a bilateral with no recon so someday I may even get a cool chest tattoo but that is REALLY far off...
I have been thinking about running too, and I thought I had given that up long ago (but I feel that I will be running, come spring).
I am intrigued by pilates also, will look forward to anyone's input on that!
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Kate are you doing reconstruction? Mine is going ok but it messes up your chest muscles and lifting. I am still trying to get an idea of how it will change my exercise.
We finished Chemo at the same time. I decided to go ahead and do my surgery this year. I thought it might give me a chance to have closure and a fresh start for spring. I really want to see my bike again when the snow melts.
Also ladies I feel for you. I finished Chemo and the rest of my eyebrows and eyelashes are going.
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Kate, I have an idea for couch-to-5K. Forget running for now, train on walking. I walked all through chemo, some days fast some days slow. You can get pretty fit - and if you don't feel so good one day, you do the same walk as leisurely pace (taking in a cafe...). But on good days you can really motor. I once overtook a large guy who was jogging up a hill and I was walking AND on chemo.
So my diary for my 80 days chemo (an excel spreadsheet) had a row for 'exercise'. It was only blank on about 5 of the 80 days, but some days it read '1.5 miles, slow' and sometimes '6 miles, 1h 24'. I had to consciously not compete with myself (ex athlete!). Now my diary entries read things like '4 miles run-walk, 42 minutes', meaning I walked most of it but interspersed with a few bursts of 100 paces running.
Oh and my other advice, don't try the 'exercise' forum on this website - they're all running marathons while on FEC!!!
Good luck
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MsBrompton, so THAT's how you are looking so fit and trim after just having done all of this! I am making a spreadsheet diary NOW, thinking of you as my motivation, and tracking my exercise beginning NOW (I walk but not consistently enough, and I haven't been tracking it, which I think would help, I used to wear a fitbit but that's gone by the wayside too, I need to find it and start that again also as a reminder). This will probably be a better way to track side effects and food than my little yellow notebook anyway...
And, I concur about the exercise forums here, I followed them a bit but got so discouraged, it's not realistic (coming from someone who thinks a 500 mile bike ride is a fabulous vacation)...
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Notdoneyet-My aunt gave me a silver bracelet and it has fuck cancer on it. It is hard to read as it looks like the blips that are on a heart monitor. I love it and wear it every day.
Tattoos-I am planning on getting one on my foot. I would like to have a dove for every procedure I have had. It may look like a flock of geese by the time I am done.
Exercise-I try not get discouraged when I am at the gym. I have lost so much strength and stamina. I find myself huffing and puffing through simple workouts. The amount of weight I am able to lift is very light compared to pre surgery/pre chemo. Chest workouts have been modified due to my reconstruction. There are certain things I am not able to do. My friend/trainer has breast implants and has helped me with chest exercises/workout. It does feel weird lifting weights because I can feel my peck muscles flexing on top of my expanders. I just take it easy, if I feel anything pulling I immediately stop. I had a tough day at the gym today. Was in near tears during the whole time. I love being there but it is hard to see how much I have lost. It brings this whole freaking 6 months into reality. I am not the same and never will be. I have to accept that and know my limitations. I just want my old life back.
Kate-I am glad you have a plan. Life beyond Cancer....remember we all had to learn to walk before we could run. To those people who don't exercise and are "healthy" and have million excuses as to why they can't make it to the gym or exercise, it makes me crazy. It makes me angry that I was the healthy one, and I got cancer....
My lashes on the bottom of my left eye and my left eyebrow are both shedding and very thin. Maybe have 6 lashes left on the bottom. My upper lashes are still hanging in there for now. Tomorrow will be 6 weeks PFC so I am expecting them to all fall out soon. I am quite skilled with the eyebrow pencil. Something I have never used until recently.
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Notdoneyet I love to bike too but yes the exercise forum is crazy.
If you gals start a realistic exercise support thread I will come and join you. It won't be for awhile though as I have surgery in two weeks.
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Before Chemo I was walking 4 miles 3-4 times a week, learning to crochet, and had just gotten my first tattoo. I have maybe walked .6 mile 3 times since sarting chemo. My lymph node biopsy and neuropathy have kept me from picking up my crochet--or cross-stitch. So, yes, I need these goals as well. Get back to walking, start a project (although it will probably be a cross-stitch hanging for my SIL's wedding--poor Granny will have to wait a while longer to get me back on crochet lessons). Weekend getaway is planned for New Year's--need to plan a summer vacation for after all my surgeries and radiation. And I have two tattoos I want to get. One I was planning right after my first, the other I am still working on--trying to combine my Hyperemesis Gravidarum, PTSD, and BC into one tribute tat. I'll take ideas! My best thought is a ribbon made up of butterflies in the four tribute colors (navy/burgundy for HG, teal for PTSD, and pink for BC.), but a ribbon is so cliche.0
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Eyebrows & eyelashes: they never went away. I might have lost a few hair on the eyebrows, but they were always spare that I didn't even notice, just did a little penciling at the end. Now I think I'm getting more ... might have to learn how to trim them....
Exercise: Need to get back into my walking. Thinking about getting a Fitbit / Misfit, which also track sleep (tamox-flush! zz)
Tattoo: not a tattoo person. But I am thinking about something like charm bracelet? I was searching on Etsy about charms. i think it will have a Cross (faith), music note (I'm a musician), a stamped word (maybe "courage" or "Strength") a Pink Sprinkles Donut or PacMan (it's an inside joke with WorryWart & my choir):
Story was.. WorryWart is one of the pianists/ organists at my church. few years ago a choir member gave me a t-shirt that says "Organist powered by <donuts> (2 sprinkled donuts pictured). WorryWart saw it, proclaimed, "it's not funny!" Fast forward to Chemo, I send my choir a picture with me wearing the t-shirt & a skull cap with music notes on it, that I am bringing "my people" to chemo. WorryWart said, "love your t-shirt!" <roll eyes>. And of course we always have donut hour after Mass.
Story #2 about Pac Man: When I emailed my choir about chemo, I used the analogy of PacMan going through the blood stream & eating up the bad cells. WorryWart grew up during Gorbachev era & missed the whole PacMan thing & he actually google "Pac Man" thinking it's the name of chemo drug. LOL!
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Superius, love the Pac Man story!0
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Exercise: Took my first long walk today around the park. I don't know if it's the post chemo or the AI's that I'm on, but my muscles still feel very week. If I sit too long it's painful to get up, but once I'm going I'm fine.
Eyebrows/Eyelashes: My left eye has lost most of the lower lashes. My top lashes are thin but hanging on. My eyebrows are falling out mostly near my nose which makes my eyebrows look ridicuosly short - like mini slugs.
Tattoo: I've been considering something either to go under my breast or maybe something very small on my wrist like this:
Except mine will say something like, "Fear Not" in honor of the bible verse that has gotten me though a lot of my treatment (Isaiah 41:10)
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Eyebrows/eyelashes: I haven't lost them all, but enough of my lower lashes that the taxo-tears just stream down my face when I'm outside in the cold. My eyebrows are holding on, but I fill them in with pencil. I was spoiled with great lashes and brows before chemo--hence my "sadness" comment from the other day. Maybe they'll come back with a vengeance! Maybe they won't fall all the way out! Fingers crossed. . . .
Tattoo: I read a book right after diagnosis that took a zen approach to cancer. In it, it talked about "taming the tigers" of treatment. That said, I'm thinking of getting William Blake's tiger ("tyger, tyger, burning bright) on my upper arm, with a stripe for each part of treatment (two surgeries, six chemos, x number of rads [I hope no rads]). This piece will be the start of what will probably turn out to be a half-sleeve, made up primarily of animals that represent different things, different cogs in the wheel that is my life.
Exercise: I very much like the idea of starting a less-hard-core page, maybe one for walking/jogging or some such thing. There will be no marathon here, unless something starts to chase me and doesn't give up after 26.2 miles.
After my next surgery (end of December), I'm going to do a special (and free) class at my local YMCA for breast cancer patients and survivors. It's called Turning Point, and I'm told that a lot of Y's offer it; it's possible because of a big Komen grant. Worth checking out for all of us with access to a YM/WCA!
I scheduled my radiation consult today. I'm not looking forward to it, and I sincerely hope that the RO (he's a young hot shot) will tell me I don't need rads. We shall see.
Superius, I'm going with the PacMan analogy. For sure.
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Dang uti is back. That makes 4 in the last 6 weeks. I have taken antibiotics all times and it only helps for like 3 days and its back. Like I am fine and go to the bathroom and then boom there it is. I had a urinalysis on the 2nd one. They give me Bactrim every time. Do I need a different one? So irritating. I have to call tomorrow because I don't want anything jeopardizing my last round. I also have this bleeding hemorrhoid problem and wonder if that contributes... sigh... I have cranberry pills too and guess that doesn't work. Everytime i went to the bathroom today was normal. Then I went at like 9pm and it was burning and progressed pretty quick in just a couple hours... sigh again... going to be a long night.
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LOL! Thanks! I don't know how I came up with the Pac Man idea. I'm not a gamer, at all! And I thought of the tamox like protecting shield for the hormone receptors. It's probably because 1) I've always told that we are on the offense with this BC thing. 2) We have a group of people at church called "Prayer Warriors" (a prayer circle). Does that make me a warrior princess?
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Superius, love the Pac Man and donut charm stories!
Kate, your tattoo idea sounds amazing.
Gooseberry, I'm sorry about your constant UTIs. How awful.
My last chemo was supposed to be today, but it's being postponed until next week because my counts are low. Bleah.
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Happy to start an 'exercising for mere mortals' thread but don't want to offend the keenies in the existing exercise thread. Suggestions for a suitable name?
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Maybe something like "first gear: exercise during or immediately after treatment" and then in the opening post maybe say something about being a "gentle" exercise thread for people who want to get moving but aren't ready for marathons...?
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I like the "First Gear" idea for the exercise page. MsBrompton, will you let us know when you've started it?
Gooseberry, I'm so sorry about your constant UTIs. That really sucks. Maybe ask the doctor if it's possible that you've become resistant to the antibiotic? It happens. You might also ask about taking a probiotic. It's counterintuitive, but sometimes probiotics can help with urinary infections.
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Sperious, I envisioned the Pac Man thing on my first treatment. Totally cool to think of pac man racing through my system and gobbling up cancer.
Gooseberry - so sorry about the UTI. Fingers crossed it clears asap!
Sorry about the delay, JenPam!
I've toyed with the idea of a tattoo, but I guess I'm just not a tattoo person. My RO says I'll be getting three little tattoo dots for radiation, so maybe that will have to be my nod to tattoos.
I had another delay before my last chemo for low ANC, but got Taxol #6 in the books now. I think we finally have a plan to keep me on schedule. I'll be getting 4 Neupogen shots after each treatment from now on. Just six more to go. Feels like the end is in sight, but someone keeps moving it just a little further away.
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OK thanks ladies, I've set up 'First steps' new exercise thread. Let's see how long it takes for defectors from the boot camp thread to drift in!
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Chemo brain is real. I can't believe how absentminded I am. I get so distracted when shopping or doing anything for that matter. I have the attention span of a gerbil, I find myself drifting off in the middle of conversations.. Sooooo I get to go back to Costco tomorrow to pick up the things I was there to get today.....Fun times!
On a side note I bumped into the kind nurse who cared for me post BMX surgery. She was by far the best nurse I have experienced in my whole cancer struggle. I told her what a special person she is and how her care and kindness to me post Sx was amazing. She gave me a huge hug and we both shed tears in the frozen food isle. Was nice to see her again and give her the recognition she deserves.
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DeeRatz, those nurses are special. I'm so glad you got to tell her.
Can anyone tell me how long it takes for the disgusting nose crust to go away? NOSE CRUST, BEGONE.
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Kate, if the nose crust is from the constant drippiness, isn't that a side effect of Herceptin? So we have 9 more months of dealing with that?
Had my pre-op today and am feeling less confident about surgery. (Didn't help that the anesthiologist seemed preoccupied, unfocused, and ill-informed.) I think chemo has just taken too much out of me. That, and the lymphedema risk is overwhelming. I know it shouldn't be, but it is. Recovery has me stressed out too--but that's because December is so crazy busy. Seriously, July was so much calmer and I was so much stronger. Oh well. One more week.0 -
For those of you doing Herceptin for a year do you know if you have to take steroids still? I have my first post Chemo Herceptin next monday and forgot to ask my MO.
I still have nose crust, runny nose and eyes 2 weeks PFC
Surgery is overwhelming. I chose to have reconstruction and a hysterectomy December 30th and I am really feeling overwhelmed. I remind myself that there will be some days in the future that I can just enjoy a nice walk in the sunshine and not think about BC
DeeRatz that was sweet that you could let her know how appreciated she is. I know it helps because she has a challenging job. I am so appreciative of how kind my nurses are at the cancer center.
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Hello all! My last treatment is scheduled for next Thursday and I am already SO EXCITED! I cannot wait to get back to normal. (I am not really sure what that looks like anymore.)
Gooseberry, I have had UTI issues as well. They gave me a generic form of Macrobid this last time. Worked very quickly and so far, so good.
Tattoos...My daughters would love to get matching tattoos, however my husband would be way less than thrilled. SoCalGrl, I like the idea if something simple on my wrist with a meaningful message as a gentle reminder for me about this "journey" and the strength it takes to get through it. One thing that always seemed to affect me deeply is the reminder "you got this". I do got this!!!! We all have! We are stronger than we ever thought we would have to be. (And I raised three children by myself!) So some message like that, reminding me of that strength. We'll see!
And lastly, my exciting news! I have a girlfriend in California whose son works for the Grammy's, and he gives her two tickets every year, and she is giving one to me and one to another friend! So I am going to the Grammy Awards in February! I am truly surrounded by such wonderful, generous friends! I will still be getting rad tx, but the RO said it would be ok to take a small break. Yay! I may love her already!!!
Stay well friends! Think of you all daily.
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exercise_guru your question about taking steroids during the full year of herceptin. I don't know the official medical answer but I do know that the first injection of herceptin I had after the end of chemo was the only one where I had a ghastly reaction ("flu-like illness", just like in the leaflet). My oncologist told me to take steroids for the next injection and see if that prevents the reaction. I've been given 10mg of prednisolone (a fairly low dose apparently).
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I had my sixth THP yesterday. My MO ordered tumor markers and we will get the results Monday. Those will inform whether or not we go for eight treatments. I feel relatively fine and my counts show that I'm tolerating this pretty well, so feel comfortable giving those cancer cells an extra reminder to stay the F out.
I learned that I will be on HP for as long as it prevents a progression and my heart is stable. Some of my MO's patients have been stable on it for three years.
So the irony of already being metastatic is that we decided I can avoid a mastectomy. The breast tumors are undetectable by ultrasound, even the one that had an area of 8 cm.
I think I've been so focused on rising to the challenge of treatment and all its nasty side effects that I haven't let myself grieve about all this. I feel like if I started crying I would cry for days. But I have too much to do, for which I'm grateful. Parent/teacher conference last night (I was so groggy from the Benadryl infusion, but hope I came across okay), taking my Girl Scout troop to decorate cookies at the nursing home, and hosting 6 girls for my daughter's 11 birthday party Sunday. I think I will schedule some crying days for January.
I hope everyone has a great weekend.
Rachel
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