AimeeFaye

HI Susan and thanks for your notes.  I'm wondering if there ever were mets in the bones, but I guess I'll need to have another bone scan with a specialist's review before we know for sure.  I don't seem to get as much info from my oncologist as some patients here, but today's info was from my general practitioner so there's some room for interpretation.  I won't see my onco until the 28th, but I am glad to have got the info about the "no changes" at least that is better than growth, though not what we had hoped.  Guess it means I have more work to do!  Chemo?  Other options?  A little disappointing, but comments from here help me put it in perscpective. thanks for your support,

Deb

Help! Info needed: I spoke with my g.p. minutes ago and he shared that the most recent ct scan results at round six of chemo reported "no observable changes since last (first) ct scan at round three chemo."  OK.... what does this mean exactly?  I had four mets to the liver, and by round three of chemo they were half the size, about 1 cm.  Now, after round six of chemo there are no changes...does that mean the chemo didn't do anything these last three rounds, or that it was killing cells as fast as they grew?  Also, while they reported bone mets in the left hip and shoulder at three months, there is nothing there now.  I don't know how to react to this all cause I don't understand the implications.  Also, there is "thickening to the femur" but this may not be at all related to this whole situation. And, lastly, how does one define "remission."  Boy, I really need to spend more time here, instead of just showing up in crisis.  But, thanks to any and everyone who can clarify,

Debra

OK, this is a really benign and vane concern:  I CAN'T SMILE cause the sides of my mouth have been cracked for (oh, wow) over six weeks?  I've tried some over the counter products and searched for options but must ask the question here!  Seems so trite, but I really want to open my mouth wide to EAT AND I want to smile without cracking my face.  OK, maybe there is some humor here?  Anybody else been there and found a solution???

THANKS,

Debra

Hi Nico!  I was just surfing the posts and came across your comment about your Chillow.  I googled the product but wonder if you can tell me how YOU use it?  I'm always on the look out for something to make this chemo process easier...

thanks,

Deb

Fitztwins:  I'm with ya!  You sound real angry at cancer and how it is attempting to shorten the time you  have with what's most prescious to you.  And you do not was your children to be victims of cancer by remembering all this all too clearly.  Do your docs have a current plan that is working for you, or has the situaion got to the point where plan f and g aren't helping?  Are you really thinking through what you final months could/would/should look like...is this so close toyou that you are planning for a short time away (in your opinion) or is there a longer time line (as if anyone knows).  Personally, If I could plan my death, it sure wouldn't include anything ugly!  And honestly, I have had more palliative care people in my life in the last five years who tell the story "Deb it doesn't have to be painful and ugly."  Now...what do I REALLY KNOW? My mother was a palliative care volunteer, and she started me thinking twenty years afo about How I Want to Expire, what do I want my last days to look like.  Again, I may be new to this cancer thing, but I am not new to dying.  After a family meeting convened with my dad's palliative care team, we were all able to volunteer (or not) for roles that would support dad in his final months.  The social worker encouraged and coaxed and was just plain talented in walking through what could, what might and the "what did dad want process" and discussed all the options.  And was it sad, Oh GOD YES, but was it empoweing for the patient and family, Oh GOD YES.  It was one way to deal with the anger, and lost dreams, and take hold of today and ask "what can I do to make today a better day today now that I know what my tomorrows may look like."  That was my experience with dad, and I hope my personal situation is swaddled in as much self dignity.  Because I am presently considered "terminal" I have already had access to some healthy professional resources, but am learning that if what I feel about these people doesn't jive, there will be others.  I have a new social worker, and there are good vibes with him, and he has already asked me questions about depression and encouraged my oncologist to look at the side effects of the drugs seriously.  Keep talking Janis, there are people out there with meaningful ideas.... and maybe some that can bring you a degree of confidence...and options...and gratefulness for today, and manybe tomorrow.  (I try to write in a Gratitude Journal everyday, and some days it says nothing more than "I am glad no one burnt my dinner." but it helps me to focus on the small things that really are important and I share these with my family....it is often a moment to hear them say :" Mommm, you see joy in STRANGE places!')  Wishing you a large hunk of joy tomorrow Janis, and tomorrow, and tomorrow, and...

Deb

Greetings Sunny:  just back from round three and the blister on my left big toe from my new shoes is my biggest concern today...well, maybe the buzzed feeling from the steroids is a little annoying, but I have enough energy to do things I love doing.  I spoke with my onco about the MRI results, likely a stroke from some time ago (hmmmm I am 48 when could that have happened...oh well, we'll deal with that later.)  My capcetibine was reduced from 4 tables twice a day to three tabs twice a day.  My hands and feet were experiencing pins and needles, burning and skin breakdown despite an elaborate solution of vasoline and everything else that was slimy.  I slept in socks and gloves for the past two weeks and that helped, but my kind baker friend declared "use lard, if makes my hands baby butt soft."  So I sent my 21 year old son to the grocery for lard.  He came back with unsalted butter.  We'll try again.  Tonight I am wearing oxynol!  I saled through round one with one a day or two of exhaustion.  Some diarhea, liking bland foods, drinking LOTS of water....a glass every waking hour.  I worked with a BodyTalk practitioner twice, a holistic healer just started, hired a phsychotherpist to deal with the head games, replace my social worker who comes with the Cancer Center, found a medicine man and have now had two appointments with a Homeopath certified in China and Canada (whatever that means) but you in reknown in our region.  He's adjusted the prescription too for this go around cause I was REALLY sad after round two.  But while that may have been the chemo, it was likely also that my 18 year old daughter left home for collegue.  Boo Hoo.  My last discussion with my onco left me understanding that "if you are uncomfortable with the side effects we can try treating those or we can reduce of change drugs, but I am very hopeful with the taxotere alone...they are lots of options."  That was the most caring and compassionate piece of hope for me to hear.  THERE ARE ALWAYS OPTIONS. Unlike some of the women here, I am on leave from work.  I couldn't imagine standing up for more than an hour or two, and I really have "chemo brain," but stickee notes do well, and I'd like to believe that this is my repreave from superwoman multitasker time!  I wish you well with your treatment.  Share your thoughts with your medical team and enjoy that first wedding anniversary.  My husband and I celebrated our 28th on the telephone as I was on my was home from the MRI that day!  Just an aside:  I have also insisted that my potassium and magnesium levels by watched more closely. I also have diabetese and high blood pressure, so some of the componds my healthstyle plan.  I have broke the bank and order a food blender/with the motor of a lawn mower, so I plan to rethink all my eating patterns and needs.  I am not a vegie fan, but i can do vegie soups and mushy vegie things.  I'd been told to stay away from coffee and all soy products and introduced raw nuts and took out much meat.  I hear about awesome diet programs with much success, but my first line of therapyare the big guns (chemo, etc.) and have added the complimentary pieces as I find them...or they find my.  Brandon Bays writes a remarkable book, THe Journey and there is a form of healing called "Theta Therapy."  that has suppored some people's needs. And if you hear of options I'd appreciate hearing about it.  I absolutely know that the power of hope is indeed the more critical piece of all of this and there and books to read and women here to talk to.  Let's keep in touch sunny....from one woman recovering from mets to another....yes, I head people say they can't cure mets, yet, but, hmmmm, maybe the patient can somehow contribute too!!!

Best to you and HAPPY 1St...and MANY MANY MORE,

Deb

Doesn't having cancer increase one's level of anxiety?!?!  After only two rounds of chemo and having had an mri last Friday, I get the results this Friday and have round 3 of chemo.  What a lucky girl....?!?!?  I keep visualizing doing the "happy happy joy joy dance" on Friday after my mri results.  And than I spent this evening here and on the net coming up with plan b,c and d.   I have NO idea what to expect after so short a treatment time...I am such a newbee to this process and haven't been here for a while cause I was really exhausted, achy and sad right after round two and for the first 10 days.  Round one...only a couple days of dread, round two, depressed, mouth sores, losing feeling in hands and feet, achy like fluy all over AND my daughter left for college (I was oh so sad but glad to see her doing life as she should at 18) and my son decided not to return to university cause he wanted to "be here to help" (I was oh so sad cause I don't want him to have to help....) but I am learning that "the new reality" (after cancer) is different!  I can't believe the head games that go on with this disease...."how long...what if...if only....I want..." And too few people to process this with.   Ugggghhhh.  Its waiting for results that increase my angst.  It will be a Loooonnnngggg 4.5 hour drive tomorrow to the city to see a psychologist (who I think I will say fairwell to tomorrow cause what we're doing together ain't helpin), and than a full Friday at the Cancer Center.  I have GOT to find something else to look forward to!  Hmmmm....maybe some chocolate pudding?  I'm asking for prayers ladies.... they sustain me!

Deb

Greetings ladies:  I start round 3 on Friday (every three weeks, Taxotere and Xeloda) so I am a real "baby" to this process.  Round 2 sucked, but I am not so naive to think my experience AT ALL compares to years of chemo....BUT... here's my thinking....if I can imagine my being here makes ANY positive difference in anyone's life, I think I want to fight.  Remind me of this when I am all crapped out!  I read a piece today that talked about hope...you can hope for a better day tomorrow, you can hope that the decisions you made today will help make tomorrow a better day, you can hope the someone else is doing something today that will make tomorrow better for all women, that a cure is so close.  And hope is born when we feel we are ACTING, we need to be actively doing something that leaves us a sense of control.  (So says the author.)  I also wonder how depression fits into some of my thinking?  I've read that chemo 
"causes" depression, and depression challenges our decision making.  What I have discovered so far, is that talking to people I trust about how I really feel is critical. And I am grateful for the women here who are willing to share.  Forgive my naivity...but I pray it sustains me!

Deb 

Greetings LuAnnH:  You are not being over-sensitive! THAT nurse's response is unprofessinal and just plain nonsense!  She's a barrier to quality service AND no patient deserves that treatment.  OK...I need to breath!  THis is too close to home:  I haD a social worker who's behaviour left me wondering if chemo and cancer had left me misreading my own feelings.  But, when I described my FEELINGS and my perception of our interaction to her supervisor, he wasn't demeaning of his staff, just AFFIRMED me:  "when you have cancer, all the people you work with should be part of YOUR team, and you should feel they are an asset."  When you have cancer to fight ITS ALL ABOUT YOU GIRL!  You deserve to be treated with respect and caring by skilled professionals.  Ask for what you need (if you know what you need) and/or let them (anyone you are entrusting your health to) know when you are not feeling good about the service, support or process!  Sometimes we can't change the person in the job, but letting their employer of hire/supervisor/oncologist know WHAT is happening and HOW it Affects us can make a huge difference.  (Did I mention that chemo seems to make me nasty enough that I don't filter my thoughts sometimes and CONFRONT the culprit....oh that's probably not good for my blood pressure!)  It so sucks when we have to stand up for ourselves AND fight cancer, but WE CAN DO IT...with love and kindness or with our pocket books.  You GO GIRL, gently if you can, but take care of you first! 

HUGGggss,

Debb

Greetings Sunny:  What a kick in the gutt!  But there is hope!  And, when I read your post I felt like I was looking in the mirror!  I too have mets to the liver and am going into round 3 chemo using taxotere and xeloda or capcitabine.  (I had an mri last Friday, and get the results this Friday which is also round 3 chemo day. How many rounds have you had?  And in preparation for possibly challenging news, I am gathering strength by coming here, knowing that others have found options!  As chemo is my first line of defense (plan A)  I plan to ask my onco what her Plan B might look like!  I live in a really remote area travelling 4.5 hours one way for chemo, but I have shook up some bushes to find some complimentary services while on chemo. I access the services of a reputable doctor of chinese medicine and found a holistic healer.  I truly "like" both people.  (My extended family is still smirking but at least they're smiling!)  I also found much hope after reading "The Journey" by Brandon Bays.  Bernie Siegel and Larry Dossey have penned some historic material that is easy to read.  Hmmm...I think I'll google "stage IV BC, hope."  I haven't post in a while, but I know coming here brings much hope!  I know there are always options that make our lives better, we just don't always know what they are...but coming here is a good place to start!   You're included in my prayers...and I LOVE your name..."Sunny."

Hugs to you,

Deb