Starting Chemo, November 2013 Group

Yeah, my digestion is still all messed up too. I'm fine so long as the only thing I eat is cheese toast made with American cheese on white bread. But y'all know me by now; I'm not likely to stick to that for long. Tonight we had lamb chops and baked potato and an arugula salad, so I'll probably be hanging out in the bathroom again after a while. My stomach just doesn't seem to be capable of doing its job at the moment, but hubby wanted lamb chops and I couldn't resist....

And never mind the *really* unexpected bouts of diarrhea that come along with NO WARNING whatsoever. I've never had anything like it, but I had it yesterday, even though everything felt fine up til that moment. Glad it didn't happen while we were out and about! Yikes.

Still also got the heavy achy legs, and my right big toe is an almost constant aggravation due to it's mostly-numb-yet-sort-of-painful state. Still walking slow and getting tired really easily after doing almost nothing which is frustrating.

After all that it sounds weird to say I've felt reasonably good today, but I have. Yesterday I was fighting depression all day, but today I've at least mentally felt much better--no idea why--and that helps a whole lot. Right now I'm fighting sleep because I know that if I fall asleep on a full tummy and then said tummy doesn't do its work while I'm sleeping it's going to feel even worse when I wake up... but I'm soooooo sleepy lol...

Smrlvr, I'm not sure when I start rads yet. My consultation is on the 23rd, so I guess I'll know after that.

Amazon, the american cheese toasted on white bread actually worked really well for me, and if I ever recover from this lamb and potato thing, i'm going back to it. The thing I have noticed since this started is that I have never once felt actually *hungry*, even when I should have,  just ate because it was time to eat, so I think I'm going to stick with the cheese toast, or something equally bland, and in very small portions, until I DO feel hunger again.

The swelling in feet, legs and belly does go away, I promise. I was so excited when I could ditch the yoga pants and wear jeans again! I dropped three inches from my waist! Oh ouch Becca on the smelly oozing. Mine never smelled bad, are the nurses sure it's ok? It just sounds unfair. Of all the other indignities we suffer, we shouldn't smell bad! Inks, so sorry about the sick child. There is nothing like your baby getting sick to make a mother wretched. Wally and Northwinds: can you feel us cheering you on, waiting for you to be through? Amazon, it sounds like you ARE finding spring. Jab, that sucks so much, needing more biopsies. Imagine the average person being out through what is happening to you: they fall completely apart. But you've been forged by  such ordeals that would make a knight tremble, you're awesome. We are all of us a pretty darn awesome bunch.

I'm 5 weeks out of rads, and my energy is slowly returning. Most of the time I feel pretty normal, then some pain kicks in to remind me of the past year. I think I can feel my increase in strength each day (except for the occasional "punishment days" for when I've tried too much). The arimidex is agreeing with me pretty well, except for the sweating. I did some moderately strenuous gardening today and found myself literally dripping sweat from my face and head. Just how is this supposed to work once I've got more than 1/4" of hair? It was lovely spring weather, the high 70's and I was drenched in sweat. what will I look like in summer? How will I SMELL in summer? Yuck.

There is a new formulation, approved last summer that I think is just low dose Effexor, for hot flashes. I'm going to ask for it. The only problem is I take triptans for my migraines, and the combo can cause something called serotonin syndrome. I think the risk is probably worth it. I simply cannot picture myself going out to dinner, sitting in some lovely restaurant or a party or other social situation and I pull out a handkerchief to mop my brow, neck and head. Or worse yet, just drip sweat onto the table. Gross gross gross! I look at that little arimidex pill each night, and think: this doubles my chances of staying alive. So much power in one little pill. My oncotype test said I've a 12% chance of distant metastasis in 10 years, but only 6% with that little pill. Hot flashes, creaking joints, whatever: I love my little pill.

Becca, what schools is your son looking at? What is the school you don't want him going to? My husband and I are both Bay Area natives (and he is older than dirt!). Back when we were in high school we all laughed at people who chose Chico, since it meant they wanted to PARTY! We agreed that we were not paying for any of our sons to go to Chico. The rep has gotten a little better since then, but we always sat amazed when some parent who was born out-of-state proudly announced their kid was going there. We even know a boy who started at UC Irvine, and transferred to Chico since he wasn't having enough fun. But then my husband started at Santa Barbara, which isn't exactly Sober U. He did transfer to Cal, though. He didn't want to party!

Ok, now you ladies are scaring me. I know it's kind of silly, because biologically sweat is the cleanest body fluid, but it's the one that I can't stand. I hate sweat. Won't kiss hubby if he's sweaty. Nearly threw up once when a truck driver sweated on a box and I touched the sweat as I scanned it in. Blood, urine, snot, none of that bothers me. But sweat. Yuck. And it's an even sillier phobia when you consider that I garden a lot. A lot of the time I'll put my bathing suit on under my gardening clothes so I can just get in the pool when I start to sweat. Hopefully, since I'm post-menopausal, and had zero SEs, and I do mean ZERO, from that, I won't have any hot flashes from whatever I have to take later. Sweat, gross.

Managed to do a little yard work yesterday. Not a lot, but I did get a bit done. I didn't get any of my fall clean-up done because of my other surgery, so there's an awful lot out there to do. Hubby worked on the grass most of the day. He keeps the front yard looking pretty good, but he's trying to get some grass to grow in the mud puddle that's our back yard. With 3 dogs and a lot more shade than sun, I'm pretty sure he's fighting a loosing battle. There's 21 trees in our back yard. I'd be happy if the dandelions and violets would just spread to cover it all.

Lisa, since my taste buds are returning and I'm eating meals vs snacks, I've noticed that about an hour after I eat it feels like there's a rock in my tummy. The only difference is the amount I eat. So I'm going to go back to eating a little more often and see if that helps. So instead of eating the whole lamb chop (which I dearly love, especially grilled outside), try eating half now and half later. I think it's more the amount, rather than the what.

Bec, it's awful about your armpit. We really shouldn't have to suffer all these weird SEs in addition to the ones everything says we'll get. I've had armpit issues since early last summer. The docs say it's not connect to the BC, but it seems like too much of a coincidence to me that the only trouble is on the BC side.

Quirky, good to hear that your mom is ok. When we're younger we think that they are over protective and worry too much. Then we grow up and they age and suddenly the tables are turned and we're the ones worrying too much. My feet hurt too, but mostly at night. Can't stand to be under the cover, either the heat from the waterbed makes my soles burn, or he weight of the cover itself makes my toenails hurt. I'm sleeping on top of the spread with just a blanket that I can sick my feet out of.

Smrlvr, hopefully your skin won't get any worse. I'm not sure what kind of 'follow-up' can really be done. With the exception of yearly mammo's and checkups. What else is there? No insurance company is going to pay for regular CTs or PETs. Being vigilant with our own bodies is probably going to be our best first line of defense. I think that most of us found the Big Uglies on our own anyway. Paying attention to what is happening to us and pushing our Drs when we think something isn't right may be the best way to follow-up. For me, I believe that if I had been more vigilant with self-exams I would have caught it much sooner. Medical technology didn't do squat in finding mine.

Amazon, hopefully you just over did it and today you'll feel better. Certainly hope so anyway.

Hope everyone's day is as bright and sunny as mine promises to be.

I have also had swelling, but it is weird.  Sometimes I wake up in the middle of the night and my hands are swollen and painful and I cannot open them. In the morning when I wake up and start moving around they start to feel better.  I would think this is lymphedema but it happens on both sides not just BC side. So I mentioned this at my last RO visit, and they said it was probably lingering joint pain from taxol!  Still 6 weeks out.  I also still have neuropathy on fingers and toes.  

Jab, you are right.  The scans did nothing for me before.  I and I was bad about self exams. I was half assed about it.  I am so mad at myself about that.  I really thought I was covered by my mammograms.  Silly me. Even my gyno missed it. I have my sleeve, too and I am supposed to wear it at work, but I am so hot and sweat so much that I don't want to wear it.  My left fingers are slightly swollen and I can't wear my wedding rings!

For those of you with ankle swelling, I had this when I was pregnant.  Drinking a lot of water might help.  Of course the causes of swelling are entirely different, but it did help me then.  Also, I was always one for gastrointestinal discomfort.  When on chemo I took Prevacid the entire time.  Have you tried that for stomach issues?  I am off the Prevacid now and fortunately I have no stomach issues.  I have changed my diet to mostly fruits and vegetables and it seems to help.  The fatty foods were giving me trouble.  I also have not gotten my appetite back, and have to force myself to eat.  The nurse at the radiology center makes sure I maintain my weight and even when I lose a pound or two they think I am not eating.

Pat, I am also sweating a lot with hot flashes.  I can't imagine what it is going to be like when I start the tamoxifen.  I don't know if they will let me take Effexor since I am already taking an antidepressant.  I really want to be on arimidex.  Are you having any other side effects besides hot flashes?  I really hope I do not get my period so I can switch in 6 months.  My body is feeling like it wants to have a period; you know that crampy, achy feeling right before it comes.  I hope it is just my imagination.  I will be really pissed after everything if I get a period.  I want to rip the ovaries out myself.

Supposed to be 80 degrees here today.  We have yardwork too.  Nothing got done last fall. 

Lisa, that's so cool about your backyard finds! My kids would go bonkers if we ever found something interesting.

jab, compression garments suck. There's just no two ways of thinking about them. My sleeve hurts to put on, wear and to take off. My fingers look like squished sausages coming out of my arm, and that's WITH the gauntlet. I was stupid enough to put my wedding ring back on after I got all outfitted, then my finger started turning purple and I couldn't get my ring off. I rode the entire rest of the drive for this college visit with my arm propped up like I was raising my hand in class to answer a question. This is ridiculous. It's a ****ing two-person job to get the thing on. We forgot to bring the silicone pot holders we used to get the thing on, so for the trip back home we had to just use our hands -- I can totally sympathize with how much pain you must have been in when your toenail came off. I felt my thumbnail nearly go, and I almost fainted. The threat of lymphedema is such an indignity. Whew! I feel marginally better ranting, but I'm still pissed!

I think I did my self-exams half-assedly too, but I was the one who found mine. ILC feels like a thickening, so it's typically pretty big by the time it feels like something is different/wrong. Mammos failed me right up until the bitter end. I often wonder if I'd had a different PCP if mine would have been found earlier and not had lymph nodes involved. I don't know; I didn't find it earlier either.

I'm two days in with tamoxifen...when do I start feeling SEs? It's not like I'm wishing for them, just want to get start getting used to what I'm going to have to live with. Smrlvr, I too would yank my ovaries out if I could! I'm trying to focus on the bone health part, but my mind keeps drifting back to the estrogen factory part.

My armpit is oozing less and the skin is a brighter pink. From what I read, this is all normal, just gross.

I went public on facebook with my cancer (at least with my FB friends). I decided that that was one way I could make something good come from all this. I had sworn my family to radio-silence on FB because I didn't want the sympathy and having to sustain all those people through my treatment. (That sounds harsh and ungrateful, I know, but you girls know what I mean, right?) But, now I'm done and I decided to use that outlet to get people to do their self-exams and diagnostic scans. The feedback has been good...so far I haven't regretted doing it.

It's a lovely day here...not sure what I'm going to do with it, but it makes me happy! I hope everyone is having a good afternoon.

Bec, I went public with my facebook friends the very day I was diagnosed...along with a rant/public service message about dense breasts and mammograms and such. But, I'm not one of those people with hundreds of facebook friends, either; they're all people I actually know in some capacity or another and all people I genuinely like. I wouldn't call what I've gotten "sympathy" so much as a real outpouring of support. Of course I'm always a little bemused when someone tells me I'm "amazing" but I know that the heart is in the right place...and the person who tells me that the most often has been through something herself in the past year that makes me think SHE is amazing, which would probably bemuse her, so I reckon it evens out.

lisa: Love the pots. They are lovely. You must feel happy to have found them right in your backyard. What is the name of the fluid reduction medication that you are on? Perhaps I should give my MO a call tomorrow to let her know that I am still in a lot of pain as a result of the swelling especially in the thighs and my abdomen sitting right under my lower ribs. The belly pain is more pronounced when travelling by car for some reason.  I am trying some teas made of field horsetail for fluid reduction and sage for the sweats, but so far have not seen much change, then again I only tried it for a day or so. I think I should give it some time to work. Anyway I am certainly tired of feeling like this. 

Jab: I am glad you made it through another biopsy. I hope you have a good recovery from it. You have gone through a lot lately! Thinking of you. 

As far as the oranges that you bought: May I suggest some freshly squeezed juice? Yummy!

Amazon, 

I started mine today.   Last chemo was Wednesday, oncologist called in the script and told me to start it next week.  

Pam

My MO (Johns Hopkins) said to start it two weeks after radiation ends.  She's the bomb so I'm doing exactly what she says.

Lisa- beautiful pottery!

I started Tamoxifen 1month after chemo also..actually a few days before...and my side effects are mood swings, RAGES, or maybe part of left over chemo and adjusting to 'new normals'?  , night sweats, hot flashes same as on chemo...but vaginal discharge- AWFUL!!!   So that's my report from Tamoxifen...

Jab- praying for good biopsy reports, the waiting is horrid.

I also have a sleeve and compression bra, I apparently have swelling in the chest (trunkal edema) not arm...and compression socks.  I wore them all to Colorado last month and felt like a freak, plus the wig of course...

Now going to Europe on Saturday and going to use them all again on 10 hour flight.  I am also going to see a lymphedema person while in Germany (the massage originated in Austria) and see what they say compared to what I'm hearing here.

All of my Dr's say I do NOT have lymphedema, the PT isn't sure and the massage therapist doesn't think I do...but I have BOOB swelling off & on and numbness aching on affected side...my surgery was in October!!!  My PS says may take a year to go down and chemo makes it all worse...great.  But my affected arm was swollen at one point when I first saw PT and the foobs, now they are all normal and still feel weird and annoying.

I haven't been posting/reading in last week, someone on another thread started a facebook group and it's so much easier to view and write on...maybe one of you all computer people can start one as well?  I would, but very slow on computer things.

Lisa, Wally, Amazon, smrlvr, quirky, vintge, wishing you all well with rads...at least you have your own boobs still right?  I am wishing I wouldn't have gotten new ones and the whole mastectomy thing...

Will post how the swelling does with air travel, and Tamoxifen which is supposed to cause blood clots and air travel exacerbates that also...yay....going to walk every hour on plane, people will love me...

I thought I was done, but the effects still linger...trying to adjust to the 'new me'...some days easier than others.

I'm eight weeks PFC and NOW my eyebrows start to fall out in earnest?  On the flip side, I'm growing a buzz cut!

aurda: No boob here either. Wanting a recon, but haven't decided what kind. I have to weigh my options. 

Sorry to hear that the swelling is giving you trouble. And enjoy your trip to Europe. Are you going to Austria as well?

Quirky: Nice hair and lashes!  I am 3 weeks PFC, but my brows continue to fall out and grow at the same time. It's weird!

I am definitely noticing some new growth on my head. I keep cutting it though, so it looks uniformed. Maybe after a month or so, I will just let it grow.

Spring has turned into winter today. Yesterday it was + 22C and today only -1C and snow! Crazy weather!

Here are some pics from my backyard.

Here is an update on my hair growth 3 weeks PFC. 

There is more on the sides and the back, but the top has some catching up to do. :P

This is what I usually end up wearing, as I 

need something on my head to keep it 

warm.