Starting Chemo March 2015

ME - hooray for finishing rads!!!!!!!!

Bekah, it's nice to have you back on the boards! I agree with everyone, this is THE place to go if you have worries, questions, or just want to vent.

Someone, I think it was here, posted an article about BC patients that end up with PTSD after treatment. Well, the sight of egg drop soup made me sick at a buffet recently. (I ate a ton of it during chemo since it was low flavor, soft, and had protein.) I could barely eat anything after that, and I felt nauseated for several hurs afterwards. It's so weird that my brain is kind of conditioned to get nauseated when I see it now. Anyone else having weird reactions like that to stuff?

I'm so happy I don't have to get ready and go for radiation tomorrow, I can't believe how relieved I feel.

I just read this n someone's blog and find it so profound

and the world cannot be discovered by a journey of miles, no matter how long, but only by a spiritual journey, a journey of one inch, very arduous and humbling and JOYFUL, by which we arrive at the ground at our own feet, and learn to be at home." Wendell Berry

Congrats to everyone putting rads and chemo behind them. Bravo and congratulations!!! Lee, I believe the PTSD theory, it comes up for me at odd times, with a food trigger like Sabra hummus which I made the mistake of taking to chemo as a snack one day. Sometimes when I just think about the whole chemo experience I feel the anxiety and it surprises me because I felt lucky and like I breezed through the process compared to a lot of women on here, but I guess it took more of a toll and left more mental residue than I realized.

Heading back to Portland tomorrow after the Pittsburgh conference and a quick stop in Indy to see sister and brother. So far no LE, but its incredibly frustrating to have a hot flash on the runway while compressed in every manner by a series of sleeves, tanks, gauntlets etc. All while noxious jet fuel-laced recycled air distributes everyone's germs evenly about the cabin.

What do you all do about the TSA screening? Do you go through the xray unit or ask for a pat down? I went through the unit on the way out but I'm remembering reading something about avoiding them after radiation. It did show some "suspicious areas" in the vicinity of my mx so I ended up getting a pat down anyway which makes me think ill request to skip the extra dose of radiation tomorrow.

Yes, Theresa, that was the article. I thought the same thing. To me 7 sisters is an obvious genetic component so I was surprised to see people commenting on their diet, too. I saw my manicurist yesterday and she commented on giving up milk. I just cut her off. I wasn't having the conversation. EVERYONE thinks they know what causes it…until they get it.

As an FYI, my manicurist DID have it. And her sister and her daughter. They were all from Ukraine so she thinks it was Chernobyl.

I posted the following in a few forums, so if you see a duplicate post, just ignore.

Garth pics. We got a limo, went in style! Cheryl on left, Pam on right, and my big drunk ass on the far right. After one year of no drinking, you can bet I was feeling no pain! Cheryl is my bike riding buddy, Pam has been my bestie since 2007. The coat makes me look fatter than I am, even though I'm not skinny but any means. Always a disclaimer, lol!

I always look at the wrong spot on a cell phone when taking pics.

My daughter Jeanna, completely, totally drunk off her ass. Well, I was too - oops!

And the man, Garth Brooks. The show was amazing. We stood and danced for the entire 2 and 1/2 hour concert!

Theresa way to party girl! Your daughter's curly curly hair is awesome!

Looks like you all had a great time, thanks for sharing Theresa!

Sue- its hard to say. I started my Lupron and AI about a week apart. Thatwas also the same time as my last week of rads. I suspect my fatigue and exhaustion was due to the end of rads. It lasted about 2 weeks then I was much better. I had an increase in headaches the first week or two of Lupron/AI but that's gone now. The mild joint aches I have didn't come on until 2 months later. And I continue to struggle with insomnia. I hate the side effects, but am thankful they are mild and tolerable. Hoping that you will not have any side effects, I've heard many don't.

PB

trvler - length of time on anti-hormonals is dependent on a number of factors.  Some docs are recommending 10 years on Tamoxifen, but the data is not in yet on that length of time for aromatase inhibitor drugs, so it depends on which drug your manicurist is on.  Some docs are not sold yet on the benefit of Tamoxifen for 10 years either - it is yet another of those doctor philosophy things.  It actually is possible that you have a fungal situation from rads. If you have open skin, even tiny cracks that you can't see, you can have fungal spores take root there and multiply - particularly if this is in a fold of skin - or an area that is skin to skin.  This is one reason some people wear a thin tank under their bra during rads so areas of the skin can't touch each other and create an environment that is prone to fungal issues.  They can usually swab the area and look at it under a scope to determine the cause - even if it is an allergic reaction, or inflammation.

Trvler - you are the best judge, particularly if you have history with this type of reaction. I wanted to mention the fungal possibility for anyone who might be reading in the future.

Sharon- I have really bad hot flashes and wake up several times a night drenched in sweat also. It's a drag. Also, I seem to be more emotional (even for me!) than usual. I sleep with the screen door open and with the bed coverings arranged so I can get arms and legs out from under rapidly. I'm pretty sure it's the Tamoxifen. I started magnesium on T's advice, but I'm not sure if I'm getting the full benefit yet, however I'm seeing benefit in other areas. I'm trying to walk, and view the walking as a benefit or a reward, rather than work. Trying to reframe it in my head.

I definitely feel better than I have lately, and am very grateful for the days I don't wake up with my stomach already in knots, or that awful feeling that dawns even before I'm fully awake, that I'm in a very dark place. That is so scary when it happens and I seem to have so little control over it.

I told my shrink I thought it was so odd that even though I felt frustrated and sick during chemo, there was a kind of exhilarating edge to fighting cancer with everything I could throw at it. I felt physically awful, but could honestly say I felt happy and pretty stable a lot of the time. Now, I am told I am NED, and I am back to brittle rapid cycling bipolar, leaning more towards depressed than manic. Interestingly, my shrink said that was more normal than it sounded, and often brushes with death (which he said a cancer dx, major surgery and chemo qualified as) result in such dramatic reprioritizations of what is important. Which I think another way if saying us you realize you're grateful to be alive.

Anyway. I'm doing ok. Haha.

Contacted my MO about the muscle & joint pain I've been having w/ Tamox. She wants me to stop it for a few days to see if it gets better. If it does she'll switch my meds. The pain in my hip is really bad when I stand after sitting for awhile.

Abdominal breathing can be helpful for hot flashes. I think there are some Japanese studies on this. I'm having some success just accepting it and meditating through it on the principle that Beddhism encourages us to sit with discomfort and notice it without getting caught up in it.

(((Jen))) we'll get you a little second hand shrink...k?

Ks- I really had to laugh. I'm pretty sure it was a typo, but when I read Beddhism, I immediately thought, "yes! I'm totally into that" (as I'm laying in my bed with a case of ipaditis. Hee.)

My way of dealing with this crap is maybe a different approach, but here goes. I don't know if any cancer cells survived. I may not know for ten years, or I may know in a few months. But until I do know, now is my normal ordinary life, and I refuse to let this bitch take one day of it away from me. I did a bunch of reading, because there is so much debate about scanning, testing, etc. and the recommendations are no pet scans, bone scans, etc. They don't make a difference. For me, with negative receptors, if this stuff comes back or goes systemic, I only have surgery and chemo. Knowing earlier won't lengthen my life, it just means I will spend more time in the fear locker. So what I choose to do is say hey, I'm here today, feeling pretty good except for random bouts of stuff like gas cancer, and until I know otherwise, I am fine. I can't change the outcome, all I can do is live each day to the fullest and cherish it. And I go back to the statistic, surgery is 70-75% curative, and I focus on that when the dark thoughts try to intrude and take over. I would rather have the time in front of me lived in ignorance, and deal with anything that happens when I have to. So let's say I get 2-3 years, and the bitch comes back. Or maybe she never left, I have no way of knowing. But I will have those years of ignorance to live my normal ordinary life.

That doesn't mean I won't monitor, see my doctor, do what I have to. But I'm not going to push for more invasive systemic testing because it won't change what is there, I will just know about it sooner and live in fear that much longer. And I figure my body will let me know if anything is going on, and I have to have trust in that. And at the end of the day, if it does come back, then I'm back on the hamster wheel with chemo. But not before I have to be, and I am not wasting a single day in worry. My days are all about living life, eating well, exercising, doing the things that are important to me.

And I wish that for each of you, every day lived to the fullest

How about when I get my mindfulness class put together, I post the readings and assignments FYI?

ALSO: I'd love recommendations for mindfulness/intention/behavioral tracking apps, preferably free, to share with my students (and for us to share with each other). I'm in a research trial right now, in the "app now" rather than "app later" condition for Headspace, which has some free segments.