Starting chemo January 2009?

I have been having a slightly hard week.  In the beinging the first week would be the hardest and than it would get better.  Now I seem to do really well week one than week 2 I start to feel it.  My muscles are so tired that small effort are real excercise.  My taste buds go and the surface of my mouth gets a rough feeling to it.  I want to sleep more during the day.  I can't seem to organize my thoughts eough to just get the 2-3 things a day I set as goals.  I spend to much time in my head thinking thoughts that have no purpose but to make me feel bad.  The feet feel slightly sore.  I feel aches in my finger tips if I try to use my nails to do any work.  None of it is really bad but it is there and interfering with my ablity to enjoy each day.  And I feel guity accepting symthathy and help offered me because none of this is That Bad.  I could/should be able to just ignore most of it and do what is expected of me.  But because the systems come from canser instead of a flu, or being a working mom, or not having committed myself to getting the sleep, food and excercise I need, the world has declared that I am entilted to feel my pains, experience them, drown in them if I wish, and it will sympathize and offer assistance, and hold any resentments inside since it would be unacceptable to get pissed at the canser "victim." 

Sorry, I started going into one of my Blog steam of consciousness things there.  I just wanted to share that week 2 is harder for me than week 1 and contines into week 3, and that is why I have not been posting much, just reading along mostly.  I need to go get dressed and get DS to school.  I will be so thankful if DH got him dressed and fed before he left for work.  

the podcast of my interview went live today! i talk about my professional photography and how i'm using my self-portraits of my mastectomy to encourage women to get their mammmograms every year.

http://fstopbeyond.tv/?p=565 

ddlatt--congratulations! Can't seem to get video to load. Any suggestions? PMing you re sf visit.

Lisa-I'm really interested in your Zometa conversation with your onc. I spoke with mine today who said he'd strongly recommend the trial. I asked if he'd prescribe a bisphos. anyway (especially since my bone density scan was a bit below normal). That's what I'd like. He said maybe--we'll talk on my last taxol tx when he's back in town (no rush I guess)  Did your onc bring up prescribing Zometa or did you ask? How'd that go? I don't know what I'll do if he doesn't want to just prescribe Zometa. I llike him alot. Also, I think lots of women switch from Tamox to an AL, especially if the go through menopause during Tamox, or after the 5 years of Tamox.

Alo-Thanks for the article ref. From lots of read it does sound good. Congrats on your first infusion

holtbolt--beach vacation sounds great! I'm so ready to go flip flop shopping...

KT57-love meercats! Maybe I'll try to visualize lying on a beach getting a tan as I get zapped (a few weeks from now).

LadyJane and YearofHat--Hope your taxols went well this week, weekly taxol sisters. I'm 3/4 done! Took a nap til 5 after tx, then a walk. Know I'll be up all night. Which is a good thing cuz my 14 year old just called saying she wants to spend a night at a friends. I told her give me the dad's number so I can check in. Oh--he's out of town. And the guys will be going home. Guys? No parent? Nope!!! I'll be driving over late to get her!!! I don't think I'm overreacting due to chemo, since my dh feels the same. She's so mad at me. oh well.

Jess--You mentioned a detox diet. I've been really off the last 3 weeks eating trail mix like crazy. Princess Kauai mentioned one: The Fat Flush diet (I think probably best postchemo): www.annlouise.com

Have a great weekend all! kim

I am on the trail...wanted the zometa....and ended up getting it.  I had a 33% chance and it worked out in my favor. I think if it would have been one of the other 2 I might have bailed out and asked for the zometa.   I'm glad that I will be able to provide some sort of research results. 

Just read my midnight post and see somehow I deleted half of what I had typed!

Jess--You'd mentioned the detox diet. Princess Kauai had mentioned it, and here's the link:www.annlouise.com/ I've been trying to remember to take milk thistle and wheat grass, just to detox the liver, but haven't been consistent. For the rest, I just keep munching trail mix--way too much of it. I also keep feeling like I  need to reward myself with food, which I know is a no no from years of Weight Watcher.

Holtbolt--we do have some sun, and my bare head does shine (maybe not a jewel!) The beach trip sounds great, and I loved your line about shopping for flip flops. Some of my co-teachers wear them to work throughout the year rain or shine. I'm sorta more traditional--but they're the first things I put on in warm weather at home!

KT54--I love meercats. I want to bask in the sun, but I guess I'll have to settle for the few seconds when I start rads and just pretend.

LadyJane and Yearofthehat--Hope my fellow weekly taxol sisters did ok Thur/Frid. Last week was better for me with less neuropathy and less depression. Legs did hurt after I hiked with a friend after work on Thurs. I can't wait til I feel stronger. Hope we all do well with SEs this week. 9/12 done!

Well, know I've got to get serious about doing some work. Gads it's been hard to hold down my 2 jobs and do it right...was hard before chemo brain.

Have some fun this weekend

jrgolomb: 9 weeks out form last TC and the neuropathy has stabailized, its no longer getting worse.  The muscle weakness is very minimally better.  I can do some things like walking longer, but my legs still shake going down the stairs, and I still hold on to the rail and get fatigued climbing up stairs.  If you get past the anemia and fatigue and have true myopathy from taxotere:

happens to about 5-7% of us.  Affects long proximal muscles the most.  They don't know if it is true injury to the muscle, or injury to the nerves to the muscles.  This is one case where "pushing it" doesn't help, but can make it worse.  You want to keep moving and not losing anything, but over training will not help.  Unfortunately all you can do is give it time.  Very frustrating.  I think my anemia and fatigue are better and that's why I feel better, if I actually measure what my quads can do they aren't any better

Hi everyone! 

Holtbolt - Let's assume we are all cancer free and are doing everything right to keep it that way!  I've been noticing recently that my Dr. looks like he spends 4 hours getting ready for work and seems to be very much into having the Dr. identity, but the most helpful person at the clinic by far has been a very professional and down to earth PA named Amanda.  Eh - you get what you get.  I'd say your doctor is a mere mortal and agree that she doesn't have the greatest people skills.   

For those of you who are done - congrats again and I am so glad you are still visiting with us here.  I love to hear about life on the other side!  Hope your SEs keep fading fast. 

Patti - I empathize with you and am sorry you have been worried.  I know that when I read my old path reports my interpretive engines go into overdrive!  Bottom line, we all have to educate and advocate for overselves, deal with treatment and make the hard, critically important decisions but we know as much about who will be dealing with this later on and when, as we do about who will be hit by a bus.  That's what I think anyway.  I hope you can clear your mind some.

I ache, my mind is mud, I get dizzy, I can't see, I am so fatigued, but the thing I dislike the most is being bald.  I can not stand it another minute.  Is it OK to be that negative with you all?  My feeling is that I am human so I like hair, and skin and fingernails.  I like all that human stuff and I want it!  I started taking Lexapro for anxiety right after my diagnosis and OMG am I more even keel!  I am doing so much better with mood and worry, but just learned that Lexapro can cause Alopecia.  It is a very rare SE and usually sets in within months of starting use, so my big worry now is that my hair will never grow back.  I had taken it for about 2 months before I started treatment and if it were going to happen it probably would have started falling out before starting chemo.  Plus I have peach fuzz, so my folicles are still holding on to what's there.  I hope that's a good indication.  I wish could say I have growth but I have none.  I'm as bald as a door knob with peach fuzz.  

Bev56 - I hear you on the dryness issue.  I still sometimes pout about this being an assualt on my sexuality.  I am not as young as you but didn't think I had to worry about menopause for about another 10 years, and I just started a new relationship * the relationship* two years ago.  We've expended a lot of energy getting on our feet and situated and now this.  No breaks.  I do feel I can't perform, just as you say.  Thankfully, he is a sweethearted man and makes no issue of it, but it does effect us both.  He's going really going grey right now which reminds me that these changes are just a part of life, even if they are medically induced in some cases.    

Misty - You're back in the saddle!  I feel so good to know you are well enough to write and to hear that your son is doing well.  I think boredom at the hospital is a very good indication that he's ready to heal and move on.   

BerkelyKim - Oh, do it.  I think that's just hilarious!  Just go for it make it look accidental!  I can  be the bad influence friend - sorry.  I had Taxol #8 on Friday.  You and I are 'this close' to being done!  I am thrilled that I have just one more month.  That really seems like a drop in the bucket after all we've been through.  The weekly treatments come so quickly, there is no real waiting which makes it go by faster.  I am glad and amazed to hear you still feel good! 

Mostly I would say my mind is not clear.  My memory is just awful, short term, long term, all of it.  My sight is really blurry.  I have mild numbness in my feet and hands.  My feet are a horrible orange color.  That is so weird.  I need to ask my onc about that.  I think it's from the carrot kick I was on when I started chemo.  The aches kick in after about 2 days and I try not to take too much Hydrocodone because it effects my ability to function at work.  I want to eat constantly.  I think as Lisa said, often it is to mask the taste in my mouth.  My blood counts are amazingly good.  My WBC are higher than before I started chemo.  I am so glad but still, I tire so easily. I've been doing a lot of stretching and am making some good progress with my 'bad arm'.  So, there's nothing really newsworthy here, and that's great! 

Oh, Renrel - I have been dreaming of a real trip East from the day I set foot in Nebraska and I have not had one.  I really don't know if I can make that happen soon, but my mouth is just watering over the idea.  The Birkshires sound great!  ...and thanks for your perspective.  It is important to remember that there are all kinds of different ways to think about things. 

So long for now Jewels.

Nancy

ddlatt- congrats on your article, I think it is great how you are encouraging others.

All you Jewels, continue to have better days and more good news from all our doctors, we all deserve a great summer vacation don't you agree? I plan to do something this summer with Malcolm once he gets healed and stronger, thank you all for your support and prayers, both he and I are growing stronger each day. I hope to have my last 2 drains out this weds, it will be 19 days post op at that time.

Renrel:  Sorry to hear you are in a slump.  That is to be expected -- we've all been there, many times, through this ordeal.  Feels like a roller coaster of emotions/feelings and no energy to do much about them. I am of the mind that you just have to allow yourself to feel exactly how you do -- don't fight it, just live through it.   It will get better.   From your many thougthful and insightful posts, I just know you are going to do fine. None of us can expect to be superwomen - ever really - much less with chemo.   It sounds like you have prioritized well -- taking care of your son and you.  Kids are resilient and  he is learning from your situation and has the opportunity to bond with his father ( I bet they are a great comfort to each other as they both worry about you).   And when your parents come on Wed -- pretend you are 10 years old and let them pamper you and care for you like when you were little - that was not selfish -- that was allowing them to nurture you as only parents can.  Just like you do for your DS.... and DH too.   You will be back for them --- they know that -- now is your time.  Take care of you.   

jrgolomb: yes, had heard of just mastectomy, had hoped at one time it might be me. oh well

Renrel: hugs to you, I still think you're being awfully hard on yourself 

You guys should check out the thread of:  angry husband rant (and everyone else I know) started by webwriter.  She captures the emotions of what happens when we're hitting the reality of recuperating from chemo, and everyone else wants us back to "normal" yesterday.  I hit that hard this weekend.  My DH said I thought we could finally relax, chemo and last of surgeries over, and I'm sitting there going I don't like this reality, I want my old life back and don't like the fact that I can't have it back.  Working through it, but its been tough. 

For the most part we  get a lot of support and sympathy while on "chemo".  The reality is the other treatments are often just as hard, or for some harder, in many ways.  I'm at that phase when people just think I have lousy taste in megashort hair cuts, or mange or some weird scalp condition or something.  (Bald at least they think chemo).    Your Oncs are rightly so taking the calls and putting their attention on the people actively going through chemo.  We're told it will take months to get back to physically where we felt before, in the meantime most of us are doing some combination of rads/hormonal therapy or both, with their own SE's, but without the patience and sympathy that chemo will usually get you.  As many of this board have mentioned.  This is the time when we want to talk and spend a lot of time reflecting on what we've been through, and colleagues, friends, some family, all want it to be over and for you to "move on." No wonder they all warn us ahead of time that the most common time for depression is right after the chemo, or chemo and rads ends.  When you combine all of that with the chemo dark cloud and fog, its not easy. 

Hi Jewels: I'm joining everyone on the emotional roller coaster. Sat. as usual was great, and Sunday as usual I had body aches and was definitely heading down fast on the coaster.

Lady Jane I can relate to "longetivity conversation" touchiness. We had friends over to celebrate one of their birthdays last night. They were all talking about retirement planning (we're all in mid 50s), and my friend asked what I thought of it all. I actually have never been one to worry about it (prophetic?--hope not), but I just said "I just hope to live that long." Which was a downer and I wish I'd kept my mouth shut, but I feel like at this point I really can't related to those discussions, even though of course I want to live a long life and retire, and I know that's possible but on Sundays I just dwell on the dark side. Unfortunately my DD heard the comment and screamed "mommmmm....." and looked so sad. SO, I made myself cheer up and hug her and I felt so bad. I think the best thing for my friends and family is not to be honest about my feelings. And the truth is there really isn't a good reason not to be positive about the future.

I save all the honest feelings for my J Jewels--you all get it.

LadyJane-have a great time in Texas. Wow, you have a lot of get up and go!!

YearoftheHat--I'll join you with the peach fuzz. I keep losing eyelashes, though. Gads I hope I hold onto a couple just to put some mascara on!

Ddlatt--thanks for the link. I checked my milk thistle pills, and it is from seeds so I think I'm ok since I'm E positive. Didn't know the other plant parts wouldn't be good.

Misty-Hope you get those drains out. You'll feel so much better. You and Malcomb so deserve a great vacation.

Well, have to get some work done before I go off to get my LE sleeve checked for fit. I've been having some arm pains that run along the underside of my upper arm. Then accupuncture, which I swear helps me make it through the week.