Starting Chemo, November 2013 Group

goodness......my phone just updated all yall wrote...lol.....yay we will look like butchers...no offense! lol....I gotta read back now!@!! I gotta TRY to sleep! lol.....yall r. right!!! guess we gotta do pink t-shirts with our slogan.....lets think about one!!!!!II gottafly to Denver in June...I think. really pretty there!!!!!!

Love the pics of all of you. I will try later to get one of me. The pictures of y'all, coupled with my last week or so, have done something for me though:  I don't know if I ever said it before HERE or not, but I know I said somewhere, that I never really "got" the whole "fighting the battle" comparison of having and getting rid of cancer, and that I didn't feel like I was fighting a battle at all. I felt more like I'd sat down on a Cancer Conveyer Belt and was just waiting to be moved along to whatever aspect of treatment and then recovery from that treatment came next. Resigned was how I felt.

The past week or so, however, and now seeing all your faces, and your eyes....especially your eyes... I finally get it.  

Although we all look very *changed*, we don't look ugly, or sick, or anything like that. We do look tired, but we look like tired war veterans who know that even though we're exhausted and scared and just want to go "home," we also know that war is hell, and the war isn't over yet. There is determination in our eyes in equal proportion with that tiredness and the fear doesn't show at *all*, because we all know we're gonna get right back out there and fight again, and keep doing it til we are done.

The important thing is that we remember that also in our eyes IS the old "sparkle." It might not show right now because we've got more important things to do than sparkle, but it's there, hidden away and waiting. Once this war is over.....and bless us all, we're getting closer to the end of the war with every treatment, every sleepless night, every side effect, every toxic  burp..... I dunno bout the rest of you, but I know that I *personally* plan to sparkle like an exploding firework over a shiny lake on a clear summer evening. Bright and fabulous, like victory. It's just got to wait til this damn war is over, that's all. 

Now that I've gotten all poetic and philosophical, I will make an abrupt turn and tell you about my year so far, which revolves around those bodily functions that we become all too aware of during cancer treatment. 

Remember, I had that screaming headache for New Years Eve and I think the day before. I finally took some hydrocodone which cleared it right up. Hydrocodone is usually my go-to drug for pains that tylenol or ibuprofen won't fix, and one or two days of it doesn't usually leave me with any bad effects. Well, this time, on New Years Eve I had nightmares that had me--in the dreams, not out loud--screaming hysterically. But, on New Years Day I woke up feeling GREAT! 

Well, great until I had my usual ritual of a cup of coffee and then headed off to the bathroom to poop. It was funny: I didn't *feel* constipated. I did skip going ONE DAY, but the day before that had been respectable, so I wasn't expecting a major catastrophe, but I was, in fact, clogged completely up. In a major way.  

When I say I was clogged up, I mean my system had come to a complete halt. I could pee, of course, but I could not poop. I also could not fart or burp, and there wasn't even SOUNDS coming from my belly area. Weirdness!  

So I spent New Years Day trying to get things moving along, and I tried pretty much *everything*....knowing, of course, that when *everything* all decided to work at once it was going to be explosive, but by that time I didn't CARE.  So yeah, everything from ex-lax to choking down a few prunes (omg I hate those and will never eat them again.) 

I've actually had problems with constipation my entire life but over the past few years had cured that by simply drinking about half a cup of Kefir (google it if you don't know abot it) per day but wouldn't you know it: Over the past couple of weeks I'd been skipping my kefir AND I'd been on anti-biotics, and I'd had to take zofran for nausea twice and that constipates me, AND I'd been eating a lot of "iron rich" foods to battle my lowering rbc/hemoglobin, so I reckon I had set myself up for a perfect storm of gastrointestinal misery, and on that day the stars in my gut aligned and everything.....stopped. So yes, on that day I even drank some kefir.

Now, I live in the South, and I don't know if this tradition goes much beyond the south, but HERE, at least, it's important that on New Years Day you eat some black-eyed peas (for luck,) and some collard greens (for money) so that you are lucky and prosperous in the coming year.  I am well known in our family for making The Best Black-Eyed-Peas  (or any dried beans.) The way I make them is very very simple: Soak the beans overnight in some water, rinse them, put them in the crock pot and cover them with water with a bit of water to spare. Add about a tablespoon of sugar (yes, sugar,) salt and pepper to taste, and between half a pound and a pound of bacon, depending on how many beans I have, and the mood I'm in, and then cook them til they are very very well done.

My husband picked out the bacon this year and he chose this "thick sliced" bacon that was superbly greasy. I could have done without that--I actually sometimes use turkey bacon just avoid the greasiness, but this time his choice might have saved my life.

After spending all day battling the constipation, I *still* had to eat a bowl of the peas, a few of the collards (I HATE collard greens, by the way,) and a cornbread muffin or two. The peas were delicious of course, but very greasy and I don't know how much of it was all the other anti-constipation things I'd consumed that day and how much was the bacon grease in the peas, but I will say that within 10 minutes of eating dinner, my tummy suddenly started to make ominous sounds. Very loud, very ominous sounds.  And needless to say, within 30 minutes of THAT I "went".  It was not pleasant, and it was not over in one trip, but I have honestly never been so glad to poop in my life.

In my heart, I believe it was mostly the bacon grease.

So that was New Years day.  Yesterday I felt pretty good except that I was *still* making occasional sudden toxic trips to the bathroom, AND my mouth tasted like collards and prunes. ALL. FREAKING. DAY.  It would NOT go away. It was basically the typical pond scum taste from chemo only worse because I kept picturing collards and prunes. And naturally, because of this, everything else I ate or drank tasted equally awful.

Then last night my tummy started making ominous sounds yet again.... and I had one more of those sudden trips to the bathroom (ugh.) After that, the collards and prunes taste started to abate a bit, but since THEN, I fart, I fart often, loudly, offensively, and from a place in my gut that I didn't even know existed. Omg I have never been this gassy in my entire life, and even the dogs look at me with offended eyes. 

My husband wants me to go out shopping with him later. I bet he's gonna regret that after 15 minutes in the truck with me, but he won't listen to reason. We'll see how he feels when has to drive me back home with all the truck windows down despite the cold, with tears streaming from his eyes. We'll just see.

I do know this: It will be a long time before I skip my kefir for more than a day or so again, and it will be even longer---like several lifetimes--before I eat collards OR prunes again. 

And all that is AFTER my lofty resolutions about how I was gonna take better care of myself this chemo round than I did last time round. Hahahaha.

Re: The next chemo drugs. I actually don't KNOW what I'm getting next; maybe someone here can figure it out based on what I DO know: I know that it's either taxotere or taxol (maybe with more cytoxan, I don't know,) and that it will be on a once every THREE weeks schedule for four treatments, instead of once every two weeks as my A/C has been.  Does that help? 

The reason I don't know which it is is because my oncologist wrote down one of them on a piece of paper at our initial meeting when he was outlining what all we were gonna do or plan on doing, but then according to my chemo nurse at my last treatment, the other one is what was actually printed out in my treatment plan. I guess I'd better ask my onc, either way to make sure that what's in the plan is actually what he wants me to have, but still, I'd like to know what I'm going to be up against a little ahead of time.....

Tonilee- Just caught up from yesterday there has been LOTS of posts...  I am hoping you find something to drag you out of the despair pit...I find I go in there every week after infusion...when I am at my weakest...my poor husband just doesn't know what to do...I think being trapped in the house for me is also causing depression/despair...I am so weak, just showered and actually put on makeup as I have bloodwork appt. today, and I am exhausted from that...!!  I have ridden along in the truck a couple of times to go places and that is a huge thrill.  I think the depression and sadness are just a part of this.  I think it's normal.  Who wouldn't be upset or worried or changed by a possible near death experience like we have had thrust into our lives?   ANYONE would be upset!!!  It is upsetting! 

I still have worries about my liver.  When doing all CT scans after first diagnosed -I had seen an MO in Dallas, then I saw the one near my home to have second opinion and thought better to be closer to home.  Well the results came to both.  I saw the one I'm seeing now and he said there are a couple of spots on your liver, lots of people have them, most likely not cancer, we'll see what they do after chemotherapy...he has been practicing over 20 years, very laid back, reassuring...I left feeling great and not worried.  I got home and the other MO from Dallas called me and said 'there are 2 spots on your liver and the radiologist report was not definitive and I think you need an MRI...I asked some worried questions and he said you need the MRI to know what stage you are...so then I freaked out and worried myself sick for a few days...talked to our family friend, my Plastic surgeon and then went for my expander to implant exchange where he told me he sees CT reports every day and so many people have spots on their liver and almost zero are cancer or metastasis...he said the MRI wouldn't show anything definitive either and then would need a biopsy to know for sure and that would be ridiculous to do as I had no lymph nodes and small tumor..he said he or my husband probably have more chance of dying from something than I do from this and they too probably have spots on the liver...he had reassured me by phone before this but in person I felt good and it was OK...and I let it go ...

But some days it creeps back in and I go through the if I have stage IV thing.....and get myself all worked up...I just do not know....we really never know when our day will come do we??  So that's what I always end up with - just let it go and give it to God and I'm thankful to have now.  But I do know how easy it is to go down that path and have to fight every day not to....it is AWFUL. I'm sure not happy or joyful or positive right now, and sure not myself...just trying to get through each day and gain energy...and hoping the future will change my outlook and my fear and worries will go away... I hope yours do too...they HAVE to!

I agree that when spring comes and the sunshine and our hair grows and we are done, that HAS to make us feel better!!!!

All- MY stomach issues were fixed almost within the hour with the Prilosec!  AMAZING!  Thank God!  I thought I would die with the burning and the pain.  I don't think I've EVER had heartburn. 

Question on the using of that....it says use for 14 days and then not again for months???  Can we use longer? 

Audra, I use Prilosec on an ongoing basis. My gastroenterologist told me to take it TWICE a day, just for maintenance. So yes, it's ok to use once a day beyond two weeks. The two weeks thing is just to get you into the doc to see if you have some problem.

The gas thing. OMG, I felt like a beach ball yesterday. My abdomen looked like one too. I belched all day, and passed the most noxious gas ever. I kept throwing Gasx at the problem which did a little. Finally I sat in the bathtub and the warm water seemed to ease my belly and helped the gas escape. Now this morning, I'm afraid to eat. I so don't want to repeat yesterday's pain so I don't want food in there to ferment away again. 

Good day, ladies!

There was as an explosion of posts in the past day... Are we collectively feeling better? I hope so.

Tonilee, Phebe, Paulette: I love all the pics of you. It shows honesty. This bc journey has been very taxing on me as well. Got scars and new, deeper wrinkles on my face. Ce la vie!

As my hubby would say:  I am showing more character.

Paulette: My treatment course seems to be rather a traditional one:

# 1 surgery: to get rid of the big sucker in the primary site

# 2 chemo: to get rid of any small suckers possibly sitting/ floating in any other part of the body

# 3 rads: to get rid of those suckers still remaining in the original site

# 4 hormonal therapy: to prevent those suckers growing and coming back

Hair issue: I got an unexpected mow hawk today, by accidentally switching the electric razor to a shorter setting. 

As for the rest of my body, there is still some stubborn hair growing here and there, not wanting to part with me. 

Pat: In regards to the 'mystery woman', life is a big mystery in itself. Keep guessing! I'll let you know when you are right. Hint the next pic...

pat: Getting warmer! 

As we go through this journey, we all experience metamorphosis in an emotional, physical and mental sense.

Does anyone have tissue expanders? If so how comfortable are you with them, even months later?

Oh.... November 2013 gals........ I want so much for each of you to get done with chemo and recover from it.  I also want each of you to know that I'm thinking of you and hope that every day you find something to smile and laugh about.  I know at this point, some of you are very weary.... tired physically and emotionally.  Remember this is like a marathon..... you run and then you get a very short respite/rest period in between the infusions.... and then you run some more and do the same thing again.  I know you each grow tired of the fatigue and side effects.  One day, your time in chemoland will be done and you will slowly but surely begin to feel better.  As for as the emotional "what if's",  it gets a little easier every day the farther along you are post chemo.  That is not to say that I I don't get those anxious moments because I do and it is not unusual to have those thoughts.  Just have to remember to do your best, live everyday to its fullest.... laugh everyday, smile everyday, have great conversations everyday and hug and love everyday.  You will find that the peace and calm that you want so desperately is really there; you just have to dig a little deeper to uncover it.  Sending many many hugs and lots of positive calming and healing prayers, thoughts and energy to all of you beautiful and wonderful ladies!!!!. 

I generally don't feel too down about the Big Ugly, except the week of chemo. Of course, that week I feel like crap and get all depressed and cry a lot. But I have these flashes at times, where I look at the stupid thing and think 'you're going to kill me aren't you'. I don't think, really, that it will, but I can't stop thinking it at times.

I've had the runny nose thing since about 2 weeks after the first AC. The nose hair went first and now I have a box of tissue in every room of the house. And my pockets are always full also. My eyes have always been teary, not sure why dry eye problems make them teary but it does. But now, it's a lot worse. And none of my old remedies help any. I hardly wear make up anymore because I'm blotting my eyes so much.

It's kind of worrysome to hear about the GI issues with taxotere. After losing 4 inches of my colon to diverticulitis, I should probably talk to my MO about any risks with the taxotere. Maybe it really isn't a good choice for me.

Toni, I really wish there was some magic words to help you feel better. Just know that someone here will always listen and cheer for you.

Jab, Smrlv, I was complaining about our weather until I saw yours. It's supposed to go down to -3 here by Monday, which is the coldest it's gotten in more than 10 years. At least we don't have any snow or ice to go with it. 

Smrlv, ever been on a cruise? before? I love them. It's pretty much the only sort of vacation we take anymore.

Pat, Lisa, the week of chemo I can't even remember my name. The next week I can remember it, but not how to spell it. The 3rd week I'm mostly ok, except I loose simple words, and don't finish a lot of sentences. It's going to be hilarious when I go back to work and can't remember how to open the safe or use the register. 

Audra, thanks so much for the offer to come to Dallas. That actually sounds good to me. I've been through the Dallas airport, but never to Dallas itself. It's one of the very few airports that we can get a direct flight to from here.

Hope everyone is doing okay today.

wally - cruising is my favorite way to travel too!!!!!!  Do you have a fave cruise line???  Mine is Norwegian.  I am very lucky to live only about a half hour from the pier in NYC....so super convenient

Pat: You are a quite a detective! The blue, black and white would fit the Estonian colours, but no that's not it. Estonia is too north. Yes, it is a country from behind the iron curtain. The collective was the imperative. Keep guessing! 

Hint: I am throwing in a bit of red. 

OK, I have to say it, I am scared to death of a cruise!  Titanic and the Italian one and all of those that people get food borne illnesses!!!  I don't think I can do a cruise...wherever we go now I am thinking the lesbian thoughts will be there by everyone...ewwhhh...

Tonilee- I LOVE the wig too!  It looks great!  I have worn mine once and I think it looks ridiculous and fake on me!  I am a turban favorite wife or a gansta in my beanies at home...:)

Everyone- you are so supportive, encouraging and hopeful!  It is reassuring to hear everyone has the same fears and anxiety and depression at times...SEE it is normal!!!  yay!! 

Hope you all start feeling better!  I finally showered and feel a little better today on day 8!!  Hope it stays...

thanks for the Prilosec advice...it is helping so much and I actually had pizza for lunch...hope that's not pushing it...

The sleeping more than 6 hours helped me tremendously...hoping for more sleep every night..

It is 44 today in Texas and freezing I cannot imagine you all with snow and really cold weather!  It is sunny outside so you'd never know it is that cold out...snow would be fun..!

Lissy- OH!  I had tissue expanders for a month and OMG!!!  Wonderful getting them exchanged to implants...they are lighter and feel much more normal and not in my armpits as the expanders felt ....and no more stretching tight feeling to my back either...would've preferred a diep and real boobs with my own tissue but I didn't have enough to use...

Becca, I've got a friend who had a mx who has a recurrence: it's in the chest wall (she was already so flat as a board there wasn't enough tissue to get good margins) near the original tumor. Mets would be the dreaded bone/lung/liver.

Amazon: going further south must be Ukraine, Georgia or Moldova, since the rest of the sundry countries aren't really in Europe. I'd love for it to be Moldova, since I know nothing about it! 10 years ago we bought my eldest son a t-shirt that said Bulgaria (from Gap, or urban outfitters). We laughed, because it seemed like the most random country we could imagine. The next year his roommate and college best friend was from, you guessed it, Bulgaria.

Good question Bec65.It looks like your diagnisis is similar to mine.  As I understand it a reoccurrance would be considered localized to the breast area. Mets are cancer that has gone elsewhere in the body that is a result of your breast cancer. It is a difficult decision to decide to have the other breat prophylactically removed but it can potentially removed risk of a reoccurrance. Its a good discussion to have with your Onc and breast surgeon. I am having my other breast removed when radiation is done, at which time I will also get expanders. My BS thought having both taken at the same might increase chances of infection and delay Chemo, which he did not want to do. Overall, I have felt that although I have had opportunities to make decisions about treatment, I was 'heavily encouraged' in one direction due to my tumor load.