April 2015 Chemo Crew... Starting in April? Please join us!

KBeee

Littleblue, I have been thinking of you hearing about all of these fires. We do not get wildfires here like that. I am so sorry your husband had to do that. That is horrible and heartbreaking.

Renee, Glad your consult went well.

Lynne, My port is on my left side and rads are on my right side. He made no mention of the port, so it must not be an issue. I will ask next week when I go to confirm it won't mess things up having it out in the middle of it.

Fran, Glad your surgery went well. I hope the results are great. I love mine. I just hope they survive radiation!

I had my rads sim today. The RO was in there for much of the time, which must not always be the case. He answered all of my questions. He told the dosimetrist that he has spent a lot of time working out the details of my case and working out the details; much longer than most. I do know there are some complicating factors because it's a recurrence and there were 2 tumors. I have my original mastectomy scar (at the "nipple", I have the exchange scar, the nipple recon scar, which is also where they went in for the biopsy of first recurrent cancerous lump, the axillary scar from lymph node removal, and a diagonal scar where they re-excised the tumor area. Then there is the area under the pec muscle where they found the second recurrent tumor. I told him I appreciated his time. I also found out that I will be getting the bolus every day...and they will be using the bolus on the entire area. I The tech's eyes got really big when he said that after she asked what area they will bolus. My friend just finished rads a couple weeks ago and had the bolus every day on a small area. I know what that area looked like. Yikes! I need to think long term, and I am glad he is being aggressive. This will be as much mental as physical once the burns start. Trying to prepare for that now.

littleblueflowers

Thank you, kbee.

I'm getting a bolus every day, and my understanding is it protects your innards somewhat by keeping more radiation on the skin. It's just gonna suck giant donkey balls no matter what, but we can get through it. We don't have a choice. Hopefully we get a few weeks befor it gets really nasty!

ksusan

Steph, that pain at this time is highly unlikely to be cancer. You're still in the crummy-feeling chemo recovery period. If you're worried, get your MO to do an exam so you can let it go.

Miaderm works best for me. There's nothing that worked as well. Perhaps statistically they all are equally effective, but each of us is an individual.

I'm very concerned for our firefighters! We have yet another red flag warning.

Saw my MO yesterday. She talked a mile s minute but was informative about the benefits and risks of tamoxifen, which I'll start in about 2 weeks. She used the lovely phrase "no evidence of disease." She blushed while going over the "tamoxifen is not birth control" spiel and when my wife and I just grinned at her, she said, "I know, I know, but I'm required to say it!" I managed not to joke that it was okay because I used, ahem, an oral method.

Two more boosts! I have a dried fruit and nut plate and candy-covered fruit for my techs and a little fruit plate for the reception folks. For the RO, a donation in her honor to her facility's building fund drive.

KBeee

I do have to say I was very uneasy after my meeting with the PA last time, but I felt a thousand times better after today.

ksusan, I like your choices of gifts for the tech, staff, and RO; very nice. So glad you're near the rads finish line. I am just anxious to hit the starting line!

Littleblue, It does concentrate things more towards the skin. It can lead to worse skin reactions, but obviously everyone is very different. If it helps to decrease my risk of the cancer coming back, they can bolus anything they want!!!!!!

ksusan

Kbeee, I put an annotated current photo in the Summer and August 2015 rads threads.

littleblueflowers

Hot physicist alert! Damn, with that mohawk and those buddy holly glasses, he can bolus me all night!

KBeee

thanks for the photos. I hope Si look as good at that point!

AndreaC

Hi everyone!

Mamajen, congrats on finishing chemo! The photos are beautiful.

Ksusan, you crack me up! My RO has had long discussions with me about not getting pregnant. Ummm...for one thing, I am 53 and a grandma...for another, I have an IUD...for another, NO FRICKIN' WAY.

Littleblue, lucky you! My rad techs are all female. Which is fine with me.

Week one of radiation finished! No SE's yet but it's way early. 5 down, 23 to go. I was told that I won't need any boosts so there will definitely be no more than 28 treatments. So DH and I have booked a flight to Ottawa to see DS at the end of September. I can't wait!

Yesterday we took our grandson Peter (almost 3) to the fair. He's pretty young and was rather freaked out by everything but it was nice spending time with him. I love being called Grandma. It's funny though, sometimes he calls DH "Grandpa" and sometimes he calls him by his first name, Ian. Ian is his step-grandpa and I think that kids instinctively can tell who is related by blood and who isn't.

Not feeling 100 percent today - headachy again but not those crushing headaches like before. I think my body is just rebelling against all I have been putting it through. Taking it easy today. It's good to be home. It has been nice spending time with my mom during radiation but her icky boyfriend is around a lot...thank goodness I am home on weekends

Andrea

Positive_spirit

LOL!! Littleblue and your alerts!!!

Lynne - I did see your note on family/retreat conflict. Take care of yourself...many more retreats to come.

Yes ... we might be opening up a...errr... liquor store. Let's just call it a wine store. In 2013, we lost our business to a multicomplex fire and then a year later my BC diagnosis. Needless to say, fires anywhere and the risks they bring distress us. But it's time to move on...even if we are faking it because what does that really mean 'moving on'? Honestly, I don't know how we are still standing but we are. And I am feeling goofy about it. So yes, I will have some talented barber put some designs on the back of my head right before a huge family gathering and going back to university teaching in public health. No conflicts of interest here. Smiles.

littleblueflowers

positive spirit, you are just the best! And congrats on your new business venture! So exciting!!! Can we come to you with wine questions now?😊

ksusan

I had a hard day today, after a few days of very interrupted sleep. (Thursday: Cat was playing with a dead bat, which made me need to call county environmental control and the vet while my wife dug out the rabies vax forms and disposed of the bat per the county's directions--all before radiation and a 2-hour drive to see my oncologist; Friday: Itchy enough after radiation to disrupt sleep, and normally I'd take a bath but the techs have my boost lines drawn on me and I'm supposed to protect them but they're rubbing off fast in the heat.)

So I saw my MO Thursday and she called in my scrip for tamoxifen. We go to pick it up at a pharmacy I don't usually use, but MO and I agreed I'd take it for a month, see how it went, see her PA, and if all was cool, switch it over to my online 3-month-supply pharmacy. Fine. Since it's a new prescription, I need to receive counseling from the pharmacist. Fine. The pharmacist, a pretty old guy, says this as his counseling: This is to prevent recurrence of (vague hand gesture/hesitation)--"yes," I say, cutting him off. There are people all around; so much for HIPAA. I should read the information about side effects. Sure (I've already read them online and talked to my oncologist, so that's fine, though I'm surprised that he doesn't mention any of the drug interactions or, since I live in a community where it's common, that St. John' Wort is contraindicated). Then he says that I will need to consider the side effects and decide if I want to take the medication. Huh? Isn't that between me and my oncologist? Isn't that statement out of his scope of practice? It's a very different statement from something like "Be sure you are familiar with the side effects," "This drug can have serious side effects in a small number of people so you need to know what they are," or "Have you talked with your prescriber about the side effects?" Then he says it AGAIN! I need to consider the side effects and I'm going to need to decide if I want to take it. The effect is that he seems to be dissuading me from taking tamoxifen. Despite my clear understanding of the benefits (and risks) and my assessment that he was behaving incompetently, it still freaked me out and made it very hard for me to go about the rest of my day. My wife, who's in the allied health professions as well, was stewing, too.

I manage to mostly let go of this and we decide to watch one of the movies that a coworker lent me so I'd have some fun, heartwarming movies for after my surgery. I haven't watched much since then, and I wanted to be able to return them soon. I pick the movie my coworker most recommended. It's a documentary, and during the filming, two people die suddenly, one of cancer! Then I notice that in one of the other movies, people are killed when young, and in another, someone is terribly disfigured. What the hell? I'm sure my coworker, who cares for me a great deal, didn't think this through, but jeez!

I've had very little upsetting or dumb interaction with people up to this point, so it hit hard on a day when I'm already itchy, wiped out, about to finish my third phase of treatment and start on the long-haul prescription, and worried about whether the cat's rabies vaccination is really sufficient if the bat was infected. So my wife found me sniveling on the treadmill and we talked for half an hour about getting all of our accounts legally tidy in case the next president and Congress undo our marriage and jeopardize our access to the other's estate, and I am preparing a kick-ass PowerPoint on the inadequacy of the pharmacist Code of Ethics for one of my classes this year, but I'm still sniveling on the treadmill.

gkodad

Kslusan - for what it's worth, I did most of my crying during the first cancer go-round at the end of radiation. Maybe that 5-year prescription has something to do with it - a daily reminder that you aren't through with treatment yet. Maybe the exhaustion is kicking in and EVERYTHING seems like just one too many things to handle, including a pharmacist with no sensitivity.

My air conditioner was off for 24 hours this last week due to the routine maintenance person cutting a wire while checking to make sure everything was OK. I'm in Florida and it was hot, but I was amazed at how upset I was. Disproportional anger for the event. So I'm thinking "philosophical acceptance of cancer diagnosis and extreme treatment accompanied by desire to kill everything and everybody over relatively minor issues."

Why aren't we warned about this SE?

littleblueflowers

ksusan, that sounds like a pile of yuk. You have every right to snivvle. Hope your kitty suffers no ill effects from munching that bat! Old men are the reason I wear a wig, if that helps at all- they are just so awkward! Although your pharmacist should have known better. Like a wizards troll familiar handing you your anti-mortality pill, but first you have to complete a series of annoying riddles...and you can't just draw your magic sword and smite him, cause then you don't get the pill! Moral of the story, trolls and beurocrats are a pain in the ass, even for superheroes.

georgie61

Ksusan - I am so sorry that you had to deal with that pharmacist. That was completely inappropriate. I live in a small town and the pharmacist and her assistants all know me and that I am going out of town for cancer tx so I get a lot of support. The old guy seems to forget that you didn't just show up with a Rx that you found on the ground - that you actually met with a specialist, discussed it in great detail, and you thoughtfully showed up at his pharmacy to retrieve it.

Still, I know how you get emotional about encounters like that. I get emotional at anyone who doesn't know me well that tries to put their 2 cents in.

I hope today is a better day for you, your wife and the cat!

Stephmoen

Had an amazing weekend in traverse city celebrating at my favorite winery I drank lotsof wine and enjoyed every minute how I've missed it so much!! Now back to reality post chemo pet scan Wednesday herceptin Thursday uktrasound and oncologist appointment Friday..sigh

ksusan

Thanks, everyone. I had a good email exchange with my college buddy who's now an OB/GYN.

Littleblue, one of the troll's riddles might be, "How have I managed to retain my pharmacist's license?!" Because I don't know the answer to that one. Or:

• Knock, knock.
  • Who's there?
• HIPAA.
  • HIPAA who?
• I can't tell you.

Georgie, "The old guy seems to forget that you didn't just show up with a Rx that you found on the ground"--so true! Thanks.

littleblueflowers

Dang it- took myself to breakfast at Buster midnight cafe of the damned, and I got called out again. Waitress- I love your hair! Is it natural? Me- nope, but thanks! Her- (decending intonation) Ohhh. Well, hang in there. Me-cringe.

It may be time to give up on the wigs and learn to accept pity.

NNo

note space hooker eye liner

ksusan

Big earrings, girl. Hold your head high and act like you meant to have this 'do!

ETA: I see fuzz!

DizzParkMom

Hello and greetings from our hotel in Illinois. Round 7 of 8 is tomorrow. Our flight was miraculously smooth for a change. We met yet another patient tonight that was told by their droctor in their hometown that they had 6 months to live. So, they came to this hospital and that was 4+ years ago. I wish I had a dollar for each time I heard that story. This woman's hometown doctor also initially diagnosed her with breast cancer, but it was really multiple myaloma. I am so inspired by her journey.

My biggest achievements this week:

Monday- went to group power weightlifting class at the gym. I used to go 2-3 times a week, now it's 1x every 3 weeks. Everyone there is so inspired that I come at all. I feel like a slacker. I really hope I can go back to having weightlifting and interval training a part of my routine again. I miss the endorphens.

Thursday - Only broke down crying at 1 dermatology appointment. My regular derm was so sympathetic about the BC, that it got me all emotional. I held it together for the meeting with the derm surgeon though. Good news is that I have no other dysplastic moles currently. Bad news is that the one on my ear does HAVE to be removed by excision. Everybody cross your fingers I don't end up with an elf ear!

Thursday - Went refrigerator hunting with DH. Forgot I had cancer for about 30 minutes!!! Then we went cell phone shopping. Whoohoo! Got a new S6 Edge. I asked DH if it was because I had gotten cancer, he said "No, it's because you kicked cancers ass!" Anyway, you know how slowwww phone stores can be...we were there over 2 hours. Again, I forgot all about cancer while I played with all the new phones. I think retail therapy might win out over mind/body therapy. Now, which one is cheaper???

AND....best achievement yet? I kicked my Ativan habit!!! I haven't had one in 10 days. I had been using them for over 4 months and the anxiety of being addicted to them was really weighing on me. Not sleeping any worse or better without them. Still only getting about 5 to 6 hours, but Ativan is no longer the boss of me!

1 day until next chemo, 22 days until LAST CHEMO EVER!!!!! About 43 days until I have a wedge cut out of my ear. About 57 days until BMX. About 58 days until I stop counting down the days until unpleasant experiences and only count down days to good stuff!!!

Love ya'all. Everyone take care! Those of you starting radiation this week, my thoughts are with you.

littleblueflowers

Dizz, you sound great! So glad you are doing well and powering through. You should be very proud of yourself! Congrats on almost being done with chemo, and awesome about your excercise.

Steph, you look great lol. No but seriously, what a fun trip you must have had! And you do look great! Good luck with the MO yuk this week 👽

KBeee

ksusan, I would have been pretty offended by that pharmacist. What a nitwit.

Little blue, "Is it natural"?????? What kind of question is that. I can see asking someone that question who has curly hair, or bright red hair or platinum blond hair...but are you naturally bald? Is their stupidity natural, or were they dropped on their head as a child?

OK. I guess I am feeling a bit sarcastic today. I have a crazy week ahead of me!

Dizz park, So glad you are leaping closer to crossing the finish line!

gkodad, You summed the side effect up well!!!!!!!

Positive spirit, Thanks for the smile!

Andrea, Glad you have something fun to look forward to at the end of treatment.

Wednesday is rads run through with xrays, and Thursday rads will begin. Next Monday is deportation day. I am supposed to teach all day at the FD and I am trying frantically to get it covered. There are only a few instructors. If worst comes to worst, one of the guys on duty can likely teach it and I will get his shift covered. First things first......get through my crazy week ahead! Now through October is the time of year I usually pull my hair out is is so crazy. I have no hair to pull out this year, so I'll need to just take it day by day and try to sort of keep my sanity intact.

gkodad

I start rads this afternoon - I thought I was starting last Thursday but the scheduler was out of the office. My port is on the same side as the rads and RO doesn't want me to have it removed until after rads, because he says the rads will make it harder for the incision to heal correctly. My surgeon and MO said to have it removed whenever the RO says OK. But several of you say your doctor insists it be out. Must have something to do with the location of the port.

lovlilynne

Hi - ksusan, read your post yesterday, and I had wanted to respond sooner. It sounds like you are feeling better now, but I just wanted to say that you've been so strong through all this, and maintained your sense of humor. In your posts, you come across as taking this all in stride and making the best of a sh*t situation. When I read that you had a day when all of this got to you, well, I felt so badly - but we've all been there. I'm sorry that the pharmacist acted that way and said those things. I just shake my head at some of these stories, but I'm so glad you all share them because it helps me be prepared for stupid stuff. How is your sleep? How is the cat?

Steph - great picture! You all look so happy, and I bet you were. Sounds like my kind of weekend! I love wine tasting.

Heather, yay for smooth flights! Yay for survivor stories! Yay for retail therapy! Yay for 22 days until your last chemo. We'll be counting down all the dates with you.

Jen, I assumed you had your wig on, right? On the plus side, your eyebrows look great! I have not worn my wig since early July - and that was only for about 30 minutes. Just the thought of it makes me sweat. I wear a hat or bandanna when I'm out, but I really don't get any pity stares.

KB, hope you find a replacement for Monday. It sounds like now through October is when you'll really need some help and for family to step up to help you get through this time. What will work best for timing of your rads appointments?

KB and GKO - I'm amazed at how varied the info/instructions are on the rads. I mean, I know it was different for chemo too, but I get that with different drugs, doses, etc. I feel like the rads should be more consistent. The skin care recommendations I received are really different - they said I can use any kind of deodorant, I can use the natural care gel any time - even right before rads, but nothing with cream for 4 hours before. The only other thing recommended is corn starch. I had to have my port out, but it is on the same side as rads, so that makes sense to me. They don't seem worried about healing at all, but I'm just worried about scratching, I'm anticipating that it will get itchy as it heals. My RO was in attendance for my simulation, and will be for the one on Wednesday - once the tech placed me, she was the one that put the sticker on me, and will review the scan immediately. She mentioned that she would probably do boosts around my tumor site, but that's all going to be part of my 6.5 weeks of treatment, not additional treatments. My RO also told me not to book any travel for right at the end of the treatments because sometimes the machines aren't working or there's a holiday or some reason why the days get extended.

I finally started posting to my blog today. I've been on hold since early April - I have wanted to get back to it for over a month now, but just had a hard time starting, but once I did start, I wrote 3 posts (all queued up), and I'm excited to continue. One of those things that make you feel more normal again.

I emailed my manager on Friday to let him know that I still didn't know when I was going to start rads and that I would talk to my RO about returning to work - probably around 9/8, but he hasn't replied to me - I'm trying to not read anything into it.

Have a great Monday and a great week!

Lynne

Rpayton

Everyone had a busy weekend.

Kbeee good luck with your busy work time. I hope you also get plenty of rest though. So hard to balance it all.

Susan, horrible pharmacist. And I know I would have reminded him with a smile on my face, of course, that he was violating my privacy!

Lynne, I bet nice to getting back to anything before the big C.

So those of you using tea tree oil on the nails have you seen much improvement? And how long before it starts working if you did?

ksusan

Thanks, ladies. Thinking about writing a letter to schmuck pharmacist with constructive feedback, and CCing it to the CEO of the corporation.

Sleep is okay enough and catboy seems himself, so so far, so good.

One more radiation!

gkodad

First official radiation treatment went well...very easy. This place makes a "cradle" during simulation and when you come in, your cradle is ready for you, and you just lie down in it. Maybe everyone does that these days. They line up your tattoos (just three on your lower chest - one on each side and one in the middle), adjust whatever is needed, photo to make sure you're lined up correctly, have the doctor check, and then zap you. No stickers after sim, no magic markers -nothing that stays on after treatment. Fifteen minutes start to finish. So...1 down and 32 to go.

Hurrah for Ksusan - just one more rad and then she's officially off the cancer treatment treadmill.

ksusan

Onward... To Tamoxifen!

(I got 6 tattoos.)

11 weeks PFC:

KBeee

Ksusan, Look at that hair! Love it! It is always so nice to see what we have coming soon in our future. I hope all of ours comes in as nicely as yours.

GKOdad, I get a "cradle" too. It is the same stuff we use in EMS as vacuum splints! I laughed when I saw that. I have my head. neck, arm mold, hold on to handles, and then have my feet strapped down. That was at the sim anyway, so I am assuming, that'll be my position every time. Wednesday is my run through. I wish they could just run through it and then do the real thing! I'd like to get one down!

RPayton, My nails have not been too bad (not using anything) but I can already see nicer nail growth coming.

Lynne, It does surprise me seeing the different things various places allow for rads. I tried researching and even the research studies say that. I think it is because nothing is proven to work. Some people have "prefect skin" with a various regimen, but the reality is they got a different protocol than many others and many have gotten lucky, because other use the same stuff and get horribly burned. Reading the post near the top of the rads board from an RO definitely made me understand it more. It also has to do with whether or not they use the bolus, how thick of a bolus they use, how often they use it, and how sensitive your skin is to it. That being said, I did stock up on a ton of lotions and potions and will try all of them after rads each day in case they do happen to work!!!!! I did find someone to teach for me Monday and that has decreased my stress level tenfold! A week from now, I will be port-free!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Mine sticks out so far that I can hang a clothes hanger on it and it does not fall off. I want that sucker OUT of my body!

Dizzpark, One left????????????!!!!!!!!!!!!!!!!! I hope the side effects are few and manageable.

I am definitely ready to get going with rads. I feel like I did waiting for chemo to start. I did some reading today on the physiology of the skin changes with rads. I like understanding the whys of things. It definitely gave me a good timeline of what to expect and why it happens. I just want to get it going so I can get it done! I have really been in a mood lately, and I think it's just wanting to get things going and get my time slot. I am glad work has been so busy to keep me adequately distracted. The kids start school on Wednesday too, so it'll be a big day for all of us!

ThePrincess

OH Crap - reading these rads post - I hurt my shoulder on my tumor side very badly the week before I found my lump - do we have to lay on that side to get rads? I thought it'd be more of a standing in front of a machine (like a mammo)????

ksusan

Kbeee, are you sure they won't do #1 at the run-through? I had the sim (with stickers and marks), then my next appointment was tattoos and treatment #1.