Starting Chemo, November 2013 Group

audra67

LOVE the poems- you are so funny!

Amazon- glad you are OK temp still and hanging in there!

Wallymama- my husband said the same about hats and he can only wear them awhile as they hurt....interesting, I thought my wig guy made it too tight...I am going to see if it has expanders/adjustments..

HOpe they get your heater fixed ASAP!

inks

Poems are great!

As far as rewarding myself I don't think there is anything in the stores that would cheer me up. I still like shopping but it does not have the same effect as it used to. I think the reward to me would be more Florida vacations (minus the Mouse, hate that place). We walk on the beach almost every night when we are there, love that.

Audra - ouch about the rash getting worse with the 3rd treatment. Taxotere is a sneaky bugger. The bottoms of my feet are numb, fingers not too bad. My lashes and brows hung around through AC but are barely noticeable after 2 taxotere.

And my bone /muscle pain is definitely from taxotere too, I had very little pain from Neulasta but this stuff is major pain in the a$$.  

Amazon - hope you feel better. Call your MO office even if you do feel better just to let them know what happened.

Wally - sending you furnace fixing vibes!! Seriously, I hope you get heat soon!

VirginiaNJ

Wally - NCL is our fave line - we are platinum with them.  This will be our first time on the Breakaway.  What ships have you been on???  Did you see in the news the issues with RCI's Explorer if the Seas?  They had a major outbreak of the norovirus.  I have been on that ship several times as well as it's home port is here in NJ.  I hope your heat is fixed soon.  14F here in NJ- I can't imagine no heat!!!

Went in to my office on Monday for a visit and was completely blown away by the outpouring of love I received from my co workers.  It really invigorated me and made me want to go back...  Think I will within the next 2 weeks!  I am def ready to reclaim my life!

Hugs to all......I hope everyone is hanging in there.

Gayle and Tonilee....you guys have not posted in a while......thinking of you!

tonilee2

Hi everyone-jabs was looking for me several pages back...thank you, jabs for that!  I am still here, just lurking and reading.  Been thinking about all of you every day and even though I do not post a lot lately, you are all in my thoughts and prayers.

Had T&C #4 yesterday, which went alright.  I get lots and lots of oral & IV push pre-infusion meds to manage my SEs which my MO states "have worked well for me...the medication regime"  I think in the shadow of Adiramycin aka the "Red Devil," Taxotere gets pushed aside and many (me included) think the SEs are nothing, etc.  Taxotere is nothing to sneeze at, apparently.  The T&C regimen has been do-able but it definitely creates SEs for me.

wallymama...I know you are concerned about the Taxotere.  It will be alright.  It will likely be more of what you've already experienced with your other chemo treatments.  I get LOTS of epi-gastric distress almost immediately with infusion (lots of GI burning, pain and diarrhea), then after the Neulasta, the combination creates fatigue, weakness, tiredness and confusion (neurological), long-bone pain and aching like I've not recently experienced.  It's all manageable with Priolosec, Zantac, Pepto-Bismol and Tums, Compazine, Ativan, Vicodin, acetaminophen, Klonopin, Cymbalta and a host of othr meds...sigh.

Oh...meds for side effects and LOTS OF WATER or CRYSTAL LIGHT to flush the toxins from the body.  I cannot drink tons of water due to bariatric surgery; however on my post-chemo days 1-5 or so, I try to manage at least 64 ozs of fluid a day, if I can.  Treatment team says "it's a must."  All I do days 1-7 is rest, sleep, take in fluids (when I'm awake), curl in fetal position in La-Z-Boy just to "get upright" and sleep some more!!  I nosh on cottage cheese, saltines, graham crackers, yogurt with granola when I can.

As an aside, I've recently given thought to possibly jump ship to another excellent Cancer Facility, one of only TWO in my area that offers "Brachytherapy Internal Seed Radiation" for Stage 2 IDC, Breast Cancers (like mine) versus the 35 sessions of External Beam Radiation.  My Cancer Center doesn't offer the internal seed treatment.

Breast Cancer Brachytherapy Treatment

Does anyone know much about this treatment?  When I first approached the issue with my MO, he dismissed it 'cause he said "St. Joseph Mercy and University of Michigan no longer offer the treatment."

I'm gonna poke around on the Radiation Boards, too!  Trying to gather-up some information about the service.

Thanks ladies!

wallymama

inks, I'm with you on the shopping. Can't think of a thing in a store that would be rewarding enough, darn it. When you have such a great excuse to shop, and nothing seems good enough, it just isn't right. I guess just the fact that the chemo will finally be over one day and it'll all be uphill from there will have to be reward enough. Unless, of course, something just jumps in my face between now and then. And that 'mouse' place. Never been, never want to go. My older daughter and her family goes every year. Don't see the logic in spending so much money to see the same thing every year. And sometimes twice a year!

tonilee, the internal radiation was mentioned to me at my first BS appointment. Didn't discuss it in depth though because I'm still on the fence about mx vs. lump. If I go with the lump though I think I may talk to them about it. It does seem like it's more directed and easier. I haven't had too much gastric stuff with the AC, and I haven't had to take neulasta, so if that happens with the taxotere it'll all be new. Not going to think about any of it yet though.

Virginia, I can't remember which ships we done. Carnival is the one we use most often, though we've done NCL at least twice, and Disney twice with the granddaughters. Talk about fun! Those two may have been my favs, even without a casino, which I dearly love. I can definitely see how people get addicted to slot machines. And my co-workers are treating me like a china doll. If I can go 30 minutes without one of them asking me how I am, it's a long stretch. Not that I'm complaining. It's really sweet that they care so much.

Got someone coming to check the furnace in a couple of hours. It's cold here, but I really feel for you ladies in the southern states. Not that we get this cold often, but often enough to be able to handle it. You guys don't get it much, so I'm sure you are miserable. Hope it get warmer soon for you ladies.

smrlvr

Wow, you ladies have been busy!  Only 2 days out from second taxol, have the bone pain, but not nearly as uncomfortable as last time.  I refused all steroids; no dexamethasone for me!  My glucose levels are back to normal and I don't have the cramping and constant peeing at I had last time.  Now, I may have more pain later today or tomorrow.  I plan on walking today, which helps.  Also, so stretching exercises.  I will have to bundle up, as it is a whopping 16 degrees here today!

Wally, I hope your furnace gets fixed!  We love NCL too!  Been on the Sky and the Spirit.

Virginia, where are you cruising to?  My sister and I are planning a big cruise for April 2015 as a celebration. We are teachers so we can only go during school breaks.

Audra, just bone pain today.  Not as cold as last night.

Lisa, I hope you are doing better today!  And your hubby too!

Amazon, I am glad your fever is down.  Your poem was awesome.

Pat, your poem was awesome too.  I admire that you can do that.  I am not that creative.

Bec, about the ovaries.  Some ladies get them removed, and I don't know how they get their doctors to do that!  Since I am BRAC negative, my onc said there is no need to remove my ovaries. He thinks chemo will put me into menopause and if I don't get a period after one year, I will be declared in menopause and can take arimidex.  But that is not the only reason I want them removed!  I don't want the damned ILC creeping into my ovaries.  I have read it likes to go there.  This is where the doctors fall short, not knowing the specifics of ILC.  I think we know more than they do.  So this is not over for me, I will be talking to my gyno about this.  We need to make a good argument for insurance to pay for it.  Lisa and Bec, if the medical community won't address ILC, then women need to be made more aware about it.  Yes, ladies, there is a BC that isn't detected on your mammograms!

smrlvr

my gift to self is a trip to a tropical paradise.  My husband and I are celebrating our 25th anniversary this year, and were supposed to go to the bahamas next month.  Needless to say, that is not going to happen, so we will go next February.  The cruise with my family is my gift to me.  It will be a stretch, but I am no longer going to put off the fun things.  I need to have some fun.

audra67

Good for you smrlvr! 

I never got any steroids before or days after treatments of my TC - just the day of before infusion....I guess I didn't know what  I was missing!

We have a trip planned to Colorado over spring break as my daughter is going to El Salvador on a mission trip - and I thought I needed to see BS and PS...since it's been 6months by then...LATE I KNOW>>>

Then we have a trip to Malta in April.  I should be excited but I feel a little scared to go places....hoping the Colorado trip will fix the scared feeling....so I can enjoy Malta...we are stopping in Germany too for a couple of days and my husband is half German and speaks German so that should be fun! 

I feel I NEED to enjoy life and do more things I would like to do....but at this point just feel a little scared... I haven't even went to grocery store by myself yet...baby steps I guess...

I'm sure I will feel better the more I do and the more 'normal' I will feel then....hard to imagine now though...

I am 2 weeks post last chemo tomorrow and still tired and feeling pressure from myself to be DONE and NORMAL and I know it doesn't happen overnight...just the way I'm wired I guess....but then resenting having to hurry up and be normal pressure too...and it's all my doing not my husband or anyone else...just my own brain...I thought I had 'worked on' that so much while in chemo and this time of forced rest - I thought I had learned ultimate patience and suffering...I need to give myself a break and go slow and not 'expect too much'...that could be written on my tombstone as I tend to over expect of friends, family, myself...etc....

Well, enough analyzing myself that could go on all day...I am seeing a 'therapist' you all will be happy to know   NOT that I see a lot of help so far....but then I do expect too much right?

It IS cold here in Dallas area!  FREEZING!  But nice and warm inside and it's so sunny it looks a good 80 from in the house!  Supposed to be back up to 70 by Friday...we have interesting weather !

VirginiaNJ

smrlvr- right now the plan is Bermuda - but honestly, we love cruising and the ships so much, that the destination rarely matters.  The ship we want to go on, the Norwegian Breakaway, also starts a run to Florida and the Bahamas in the fall......but I am anxious to go on a cruise sooner.  The Breakaway is a new ship to NY and we haven't been on her yet.

My gyno is pro removing my ovaries.  However, both my surgeon and my MO said there is no medical reason to b/c I am also BRCA negative.  It's a very scary and difficult decision b/c I also fear ovarian cancer.  My gyno said that if I didn't have my ovaries out, she wants to check me every 6 months via US- HATE the idea of that.  I told my MO they gyno a thoughts and she did not agree with this approach.  Needless to say I am very conflicted.

Bec65

Tonilee, so glad to hear from you and know that you're doing relatively well with SEs.

Amazon, love the haikiu!

Wallymama, warming up yet?

Lisa, how are you doing today?

Virginia, congrats on having a work plan!  Even virtually, you sound so excited!

I got an automated call this morning from my cancer center to watch an informational video on radiation therapy.  It's so weird to think I'll be doing that in four weeks.  It made me look at the calendar -- I could be back at work after spring break if all goes well.  But there's still the ovary thing.  I have a feeling that if I want them out, it will be an uphill battle with doctors.  I know we'e supposed to be our own advocates, and I can be the biggest advocate in writing you'd ever want to meet, but the idea of having to push for something in person with a doctor, questioning their opinion, just seems so uncomfortably confrontational.  I guess I do need to listen to their opinions before I play this all out in my head based on assumptions.  

I washed my wig this morning and tried to style it a different way.  It gave me flashbacks of playing with my big Barbie head when I was younger.  (As an aside, I have no idea what possessed me to wash it in the morning.  I have no courage to go out without it, and it won't be dry for hours.  I guess it's good that I still feel crappy.)

Re rewards after treatment...the whole family (including my 91-year-old FIL) is going to a 125 year old house on the coast for a week in July.  We've been a few times in the past, but not the past two years because of the kids' schedules.  I decided to heck with their schedules -- whoever came come, can come.  My routine there consists of the following:  eat, sleep, move...eat, sleep, move...eat, sleep, move.  Pretty similar to my routine now, come to think of it, but at least it will be at the beach.  As for retail therapy, I'm going to buy a pair of decent black pants.  When I cleaned out my closet a couple weeks ago, I must have put 6 pairs of bad black pants in the donate pile.  I keep buying inexpensive ones that always only sort of fit because I'm too cheap to look at better made clothes.  (No offense intended, Target and Kohl's -- still love you.)  Besides, my work isn't exactly a place the fashion police would show up.  However, I now want one or two pairs of good-fitting black pants -- no waist gap, machine washable, already hemmed, pocket for my phone.  If these dream pants come in a nice khaki, I want those too.

QuirkyGirl

hey tachycardia ladies - my GP just temporarily changed my high blood pressure medicine to a beta blocker in hopes of bringing down my heart rate.  I start on Saturday and will let you know if it works!

audra67

I just read at cancer.gov site about Tamoxifen...

It says if PREMENOPAUSAL- the Tamoxifen does not block all estrogen made by ovaries and would need to be taken in addition to either ovarian ablation, removal or suppression with drugs (Lupron)...

If Post menopausal then no worries...

So looks like information is different everywhere!  But I would rather have them suppressed than think I'm ok on tamoxifen and have it not be working enough! 

I wonder if there is a difference with ablation or whatever compared to this chemo putting the ovaries into remission?  So taking these meds or having ovaries out would be same to us as we already have had hot flashes periods stop etc???

Anyone?

VirginiaNJ

Audra- I am pre menopausal and took tamoxifen for 5 years - my first cancer was triple positive.  I did not take anything else to suppress the ovaries (though I did have 1 year of Herceptin as I was her2+).  By the same token, I had a friend who did Tamox but had injections to suppress her ovaries...but she had a different type of cancer than I did.  Sadly I don't remember what she had.....I will have to ask her.  The ovary suppressing was never even suggested to me by my Sloan MO or my local MO then or now.

Anyhow, the recurrence was triple negative which meant that both the tamoxifen AND the Herceptin did their job.

Palameda

Tonilee, great to hear from you, you've been missed!

This year is our 30th anniversary. We (with another couple, who are also celebrating 30 years) are going to take the scenic train from Vancouver to stay in Banff for a few days and then to the Chateau Lake Louise for a couple nights. Seeing Lake Louise has always been on my "list." I guess those of you in cold places dream of going to warm places, and me, I want to go north to Canada! So sorry for those of you who are cold, here we are starting to get a bit hysterical over the severe drought. Our fire season will be something terrible. Rather than buying myself something, a wonderful trip to hopefully celebrate a return to feeling good is my reward. 

Paulette, a question that is probably evident to all else but me, you sign off with "t're." Is that a nickname?

Audra, Malta? Is that someplace you've always wanted to see? I know a lot of British vacation there...

BigT16

Love the poems.  I'm am definitely not creative when it come to words.

In the BGC tomorrow round 5/12.  Hopefully my liver enzymes decreased. I'm beginning to get a little worried about it.

Lisa- hope your feeling better.

lisa137

Wow, you ladies and your cruises and international vacations, lol!  We manage to get to the beach for a couple of nights about every other year---the beach is only a couple of hours away so not a big drive, and once in a while we visit my husband's family in TN for a couple of days, but that's about the extent of our exotic vacations. Husband *dreams* of a tropical beach vacation; I'm hoping we can make that happen for him one day, but we might have to sell a few musical instruments to do it. 

Me, I don't really care that much, I'm pretty content at home.  I think I already got all my rewards for going through this; husband has bought me so many neat and sweet things and gadgets, from a fancy gaming computer to a stuffed moose to some warm fuzzy socks....He's the greatest. I don't really like to shop generally but I've done my share of retail therapy lately; got myself one of those tables like they have in the hospitals to put by my bed and set my computer monitor on so I can work even when I don't feel like getting up, and last week I got a *really* wild hair and ordered myself a metal detector from Amazon. This is because my parents are moving away from the farm where they've lived for years, and the old guy who gave them the land had lived there for years before that--it's been continuously occupied for at least a century, so I want to give the place a good going over before they move. It should be fun! We'll probably mostly find soda can tabs, but it's the *hunt*, ya know?

I feel pretty much fine today but I have a complete inability to regulate my own body temperature, and I'm pretty sure I have thrush AND/OR the same thing my husband has. Probably both. Unfortunately, it snowed several inches here last night, our small town pharmacy was closed today, and it's supposed to get way too cold tonight for (poor sick) hubby to be running to the next town to find an open pharmacy for me--it would scare me too much for him to go without me, and scare me too much to go with him. So for tonight I'm just gonna suffer through it and we'll call my doctor tomorrow and see what they want to do then. The pains are much less today, it's just my temp shooting up and down wildly and a sore throat and a rather ugly tongue. I think I'll live through the night though; I really do FEEL much better than I did yesterday. If in the unlikely event things take a really bad turn and my temp goes very high I reckon we can call the rescue squad--we did just give 'em 40 dollars after all. lol.

At least I don't have the terrible body pains today/tonight. Last night I took the half a hydrocodone (a really low dose is all I need of that sort of stuff,) and then before I went to sleep I took the other half. Slept through the night like a baby...deep sleep with non-disturbing dreams. Kind of awesome. This may be why I actually feel better today despite the possible thrush and/or possible throat infection/cold/or whatever my husband has, and my crazy up-and-down body temperature.

Tonilee: Great to hear from you. Your list of meds made me smile since it's so similar to mine, and ditto on the lots of water. I drink some crystal light, too, but I've suddenly gone back to my oh-so-southern roots and discovered that iced tea is the most delicious (for now) drink in the entire world. I think I've drank three full glasses in the last 45 minutes. Guess I was thirsty!  

I actually e-mailed my doc the other day with some questions about ovary/uterus removal, drugs for after radiation, and other questions ...and he of course is awesome enough to answer these questions via e-mail and also asked me to print out the entire thing and bring it to my next visit so we could discuss further. He indicated that for ME, he would like me to be on Femara eventually (Femara is apparently the favored drug for ILC,) and that if chemo didn't get me fully into menopause we'd discuss ovary removal for that purpose.  Also said he'd go ahead and set me up for the BRCA test at our next visit, since if that DID happen to come up positive, it would help with getting insurance to pay for ovary removal. He said we'd discuss the uterus removal issue at my next visit--like some others, I want everything out that might cause trouble and my mother DID have uterine cancer back in the 1970s (plus DCIS in the late 1990s. She's fine today.)  

I have to say one more time how absolutely blessed I feel that this particular oncologist is someone that my family had already been associated with for years and years due to his treating my grandma and stepdad for blood disorders, plus my mom's DCIS, so that going to him was just automatic for me. 

I LOVE the poems! More please!!

wallymama

Heat on. Just needed the blowers adjusted, didn't even get charged a service call.

I guess that since I'm five years post-menopausal, the ovary thing is a non-issue for me. I think my issue is more the mastectomy vs lumpectomy. If you have a mx, what's the statistics on recurrence vs recurrence with lump? Anyone know? If there are no lobes left, can ILC even come back? I understand that the five year survival rates are about the same, but who the hell cares about five year survivals? I want 30 or 40 year survival rates. I really need to get off the fence about what kind of surgery to have I guess. But then, I still have 15 weeks of the BGC left before I have to decide.

Hope everyone has a warm, pain free, easy night.

lisa137

I'm sorry the decision is tough for you, wallymama. It was an easy choice for me; my lump was in the left breast but there was suspicious activity on the MRI in the right breast which caused me to have a biopsy on that one as well. No cancer, but the doctors words were "Your right breast is pretty much a mess, too."  The decision was easy for me to go with the BMX instead of a lumpectomy or UMX just because by then I'd had all the breast biopsies I ever wanted to have. 

I will say that I haven't had a moment's regret about my decision, even if I do occasionally have an "OMG my boobs are gone!" moment lol. The surgery and recovery is nothing compared to chemo, although the drains DO suck. Literally.

Maybe you could try imagining that you've already made your decision and are living with it, then try imagining you made a different decision and are living with that....and see which imaginary future just feels better. I do that a lot when I can't decide; it lets me know what it is I actually do want.

Bec65

Woo hoo for heat AND no service call, Wallymama!

I had a surgical resident tell me that by having a double mastectomy and the axillary dissection on my bad side, I'd reduced my recurrence risk to 4-5%.  I don't know what timeframe he was referencing, and I haven't tried to look it up to verify because it was a number that made me happy.  I still have all my nodes on my good side, so they are there for a recurrence, as are skin and any bits of breast tissue that got by the surgeon.  The recurrence stats for ILC have been on my mind a lot lately, so I might consult Dr. Google again.  I'll let you know if I find anything informative.

Bec65

Wallymama, I also agree with Lisa's post.  I haven't regretted my decision to have a bmx for a second.  My tumor was 4.8 cm, so I would have had to fight for a lumpectomy, but I never considered it anyway.  On the recurrence level, I like knowing that I've removed problems as much as I could, even if it may result in only single digit percentage improvements.  On the appearance level, my bald head bothers me more than my flat scarred chest ever will.  I can get pretty vain about certain things (hair, for example!), but for some reason, lack of real boobs isn't one of them.  I'm not doing reconstruction, not because I'm sick of surgery -- because I'd have my ovaries tonight if I could -- but because I'm fine with my foobs.  I can be whatever size I want, then sleep quite comfortably on my stomach at night.  Needless to say, it's a personal decision!

smrlvr

Lisa, sounds like you live in a neat small town.  I would love that. No wonder you are content being home. I live in the suburbs of upstate New York, and since 9/11 we have had many down staters moving up here, and it is crowded, traffic, stressful!  That's why we need to get away.  I would love to move further into the country with some land and an old farmhouse.  But hubby doesn't want to get into a situation where he is always working on the house.  He is right.

Wally, I have always had big breasts, and they were 75% dense.  Once I found out that I had a tumor that was undetected by mammograms for several years, there was no question they had to go.  I don't miss them, and the challenges In Finding blouses that would fit.  But I do miss looking feminine, and may consider reconstruction next year.

Virginia, the onc I saw at Sloan was the one who told me about the Lupron suppressing the ovaries.  She recommended doing it.  My onc here is hesitant to put any more chemicals into my body.  So I don't know what to do or what to push for.  I just don't want any more estrogen.  I am hoping I can work something out with my gyno and that she can work with the insurance company for me.  I don't like the sound of US every few months, either.  Can't take the anxiety.

Pat, I always wanted to ski ant Banff.  I hear it is beautiful there. .  But now I prefer warmth!  So cold today!

I think I spoke too soon about the pain.  I feel like I was hit with a truck!  Every bone hurts.  I think I will go the hydro route tonight. 

jab

Wow, I love all the fun things people are planning. Pat - You will LOVE Banff and Lake Louise (I am a bit biased, as you might expect). My DH and I will be heading to California in Nov - I want to go south of LA, as I havent been in that area of California - Any suggestions?

Amazon - You have talent! I can see the book now - "Boob Haiku" by Amazon Warrrior

Wallymama - I also have some several lumps in my non cancer breast. I have had biopsies and the are neg but I am taking no chances, so the right one comes off in Sept and I am good with it. I talked to my Onc about it again this week and her comment was if it was her she would do the same. Thats good enough for me. Statistically, it is hard to say. There is such a lag in treatment and survival rates and my situation is pretty mixed, so I'm not sure. The other upside is reconstruction is more consistent. It is hard to downsize of real boob to look like a foob, so my plastic says, so gummy bears for me all the way!

Regarding having ovaries removed - I asked my Onc about this a while ago, as I am premenopausal (I think I am...hard to really say right now). She said there was a big study that was wrapping up in Feb of this year, that would answer the question if it was really advantageous. I am a candidate but she would not recommend it unless this study came back in favor of it. Might be something to ask your Oncs about. (I did google this but nothing on line about it that I could find)

Regarding internal radiation - Thats a new one. I thought they only did internal rad for internal cancer - Will have to ask my Rad Onc about that.

Well, I started the steroids for the Taxotere tomorrow. Can I ever type tonight! WooHoo! I hate steroids! I have been off and on them for a while due to arthritis and they make me nutty, but at least I have energy for a change.

Tonilee - Good to hear from you! I wonder if people are OK when we dont hear from them for a while so I'm glad your good!

Lisa137 - Glad your feeling a bit better. Take care of that cold. They can turn ugly fast.

I got myself a new wig today. This will be wig #2 as Wig #1 seemed to have an attitude. Wig #1, who I will refer to as Natalie, as she is dark and rather french looking, would jump off my head at inoppertune times, like when I am in the grocery store, for example. I think she was looking to find a younger noggen to sit on. Anyway, Natalie is being shelved, and my new wig, Julia is coming out to play. I hope she behaves. She is a lighter and a bit more reserved looking so I'm hoping she'll stay put.

Have a good night ladies

JAB

VirginiaNJ

smrlvr- I really do think they make the reco based on the type of cancer.  While my friends cancer was caught very early, I do remember she had a "lot" going on meaning some dcis, perhaps some ilc, etc...  I will check with her, but I know for sure she didn't have just one type.  Interestingly, she never had chemo.  She had a lumpectomy rads, 5 years of tamoxifen, and 5 years of the ovary suppressing shots.  She is now off those shots and has resumed (much to her chagrin) her regular cycle.  She is a couple of years older than me.,,,,so 49-ish.

lisa137

I would absolutely buy "Boob Haiku."

All your talk about what you will reward yourselves with made me really think tonight -- I was watching American Idol, so it's not as if my brain needed to be engaged for that-- and now I know what I would LIKE my reward to be for making it through all this:

Comfort.

All I really want is to be able to plop down carelessly on the den couch, throw my feet onto the coffee table, lean over on my husband and tickle him and have him tickle me back and do a little rough housing without being too tired for it, or too nauseous for it, or too achy for it, or too sore for it, or just too blah for it.

I want to stretch out on my bed and really STRETCH and stare at the ceiling and think about things like stripping and repainting my kitchen cabinets and what colors we're going to use in the remodel of the bathroom without the entire prospect of "work" making me feel too tired to even think about it.

I want to love my house again, which means I want to feel "up to" keeping it clean and neat and reasonably presentable, instead of overwhelmed by it. (It's not huge, but it's got 3 big bedrooms, large living room, HUGE den, etc.... built in 1948, it's meant to have two or three generations living in it and looking after it, not just two people and a couple of dogs and a cat.)

I want to take accidental naps just because I'm so damned comfortable where I am that I fall asleep, and NOT because I took one drug or another or because chemo has me so fatigued I can't stay awake.

I want to snuggle with my dogs without having to be careful that the bigger one doesn't paw me too hard and either flip my port (lol) or scratch me.

I want to sit in the sun in a lawn chair in my back yard and just enjoy watching the dogs run around and the breeze and I want gnats to be my biggest aggravation.

I want to feel like going to the lake and doing some catfishing at night off the pier isn't something that would wear me completely out. Hell, I want to plan ANY activity without wondering or calculating if I'll actually be feeling good enough to do that.

I want to be able to bundle up and go out and play in the snow and enjoy it, instead of just wishing this cold inconvenient crap would melt already cuz its existence is making me more miserable.

If I can survive all this and just be comfortable again --- physically, mentally, and emotionally, and *all at the same time,* then I think I won't be asking for anything else.

I guess it will come eventually... I hope it will. It's tough sometimes to look past all these days that are miserable at worst and just aggravating at best and see a comfortable future, and I reckon no one is comfortable ALL the time, but I haven't been fully comfortable since October when I had my BMX, so at this point I'm having a hard time even remembering what it's LIKE, but I remember enough to know that I miss it.

But yeah. That's seriously all I want. Just to be profoundly comfortable.

Kimmie0247

Hello everyone. I started chemo in Nov 2013 for Breast mets to my trachea, chest wall, both lungs and spine. I'm on abraxane and it seems to be very easy chemo so far

ADJ

Hi, Kimmie,

I just had my 5th Abraxane today and doing ok.  

Anita

deliciae

Friends:

I started chemo beginning of Nov - carboplatin and gemcitabine - and the side effects were relentless.  But here I am to complain about it, and to let you all know that despite that, the results of my scan were really good - the liver mets were down by 50% and the mass in my lung was gone altogether!  So, you know, eff you, side effects.  

In light of the good results, my doc wanted to continue chemo and see how much more we can werk that liver.  Today was my first infusion of this second cycle and to my surprise, I'm on Abraxane instead of the carbo/gem routine.  I made them call my doc from the infusion room to confirm that was correct, since he hadn't said he was changing it, and he said why not try the Abraxane since it might be a little easier on me.  

Anyone else have both of these and can tell me about your experience with them?  Was Abraxane easier?  I am feeling fine right now post-infusion, though very dehydrated. The nurse told me the major side effects with Abraxane were nausea and vomiting (I had some of that with the first go-round - will this be that much worse?) and possible hair loss (I kept my hair with the carbo/gem though it thinned out some.)  

Also, does the fact that I had gem/carbo already mean that if the Abraxane doesn't work as well, I can't go back?  I was willing to do another dance with them since we got such good results the first time out. So many questions!

Hope y'all are feeling as excellent as possible tonight.  xo

jab

ok, I had to laugh. I'm sitting here in the big girl chair getting the taxotere and I read that "Boob Haiku" is getting a following (at least Lisa would buy it). 

Amazon - get pen to paper, girl! We have a potential best seller! 

Lisa - great reward list! I'm adding to mine - I want to love walking my Sheba boy again. It was the best part of my day and now is one of the hardest. So my list is now;

1) GREAT sex with DH

2) Great hike in a new place to make me feel strong again.

3) Great Italian food so I taste normally again

4) Great dog walks again

wallymama

So far Lisa has the best reward list. Really don't think it can be topped. Just to be comfortable, but, yeah, lets go ahead and add 'normal again' to the list. I think I remember normal, but maybe it's just chemo-brain trying to trick me. But I really want to play ball with my doggie babies again. One of them just stares at me when we're outside, then looks at where we keep the balls. I'm afraid to throw a ball since the port is on the right and I certainly don't want more trouble with that thing.

Pond-scum is here with a vengeance this time. I figure that by the time this is over, one of two things will be evident. I will either have the cleanest teeth my dentist has ever seen, on not one shred of enamel left. I've already brushed 5 times today.

Actually, I may not have a choice about the surgery. If it doesn't shrink a lot more a lumpectomy may just be off the table. It's still roughly 6cm x 3.5cm, and I don't think that that is lumpectomy size yet. Trying not to dwell on it is like trying to forget a toothache. I really admire you ladies who opted for no reconstruction . While I have no problem at all going bare headed, I'm not so sure about being boobless. Part of my lack of decision is the extra surgeries for that.

Jab, hope the new wig behaves better than the old one. Make sure you show her the old one and tell her that's where she'll wind up if she's bad.

Amazonwarrior

Warning: You might want to skip this post if you read it before, but I did a few changes to the original. 

Creative work is always a work in progress...

I hope you don't mind me posting this again, but I accidentally erased the post from Jan 29 while editing.

I am in the thinking stage about more 'boob haiku'...

But here is again what I deleted...

CHEMO HAIKU

Hot flashes, cold sweats.

Moonless night is passing by.

Sleep is escaping.

**************************************

Dexamethasone.

Hunger pains are striking now.

Feeling on the edge.

**************************************

Body aches and pains.

Temperature is soaring high.

Do I want to cry?

**************************************

Chemo's welcome sign.

Hydration is essential.

Water tastes awful!

**************************************

Painful, itchy scalp.

Hair falls out like autumn leaves.

Liberating bald!

*************************************

Haunting side effects.

Feeling scared in Chemo land.

Crying a wolf's cry.

**************************************

Severe nausea.

Mouth sores decorating tongue.

Glistening like pearls.

**************************************

Taxotere, my mate.

Bone pain with metalic taste.

Will you leave or stay?

**************************************

Red devil in veins

Kicking cancer in behind

With smoky odour