Thanks for the recent emails and calls, wondering where I am... I didn't realize it has been so long since I posted. I appreciate everyone's concern. It's hard to stay in touch when I'm feeling low, so I appreciate when you reach out... it was good to hear from everyone. I'll try to catch up with individual replies soon!
I'm OK. Not great, but OK. The first couple of weeks on Taxol I felt like I'd been hit by a Mac truck and I got pretty discouraged and frustrated trying to deal with the pain.
The script pain meds they gave me for the pain knock me out but I take them at night so I can sleep... and it's a good, restful sleep, not a drugged-up groggy sleep, so that part works out well. For during the day, I've come up with my own plan: as much walking as my body will let me do (which isn't a lot, but moving and being out in nature feels good, no matter how short a distance or how slowly I move!), plus a bit of stretching and a bit of yoga. Meditation, too, when I can do that.
Sitting is the worst thing for the pain so work aggravates it but as soon as I get off, I start moving around, meditating, etc.
Seems to be doing the trick. This third treatment was much more tolerable, with the pain kept down to a bearable level.
The bad news is (hey, there had to be a flip side -- every time I start to get up, I get clobbered by that durn 2x4 again!) :) neuropathy is rearing its very ugly head. This is one of the side effects I've been dreading the most. I'm taking large doses of B6, B12, and l-glutamine -- no definitive evidence that any of those help, but there is some evidence that they may help, and they won't hurt. And of course I'm avoiding the things that can make neuropathy worse.
And I'm thinking lots of positive thoughts! (thanks, friend!)
Most people will recover from neuropathy within a few months of discontinuing chemo, but it's not unusual for it to last several months or years. In rare cases it's permanent. I know one woman, a PhD, who is facing permanent disability because she can't work in her field -- or much of any field. What do you do when your fine motor skills are gone? I can't imagine not being able to type, knit, button buttons, turn a key in a lock, sign my name... but these are all things that happen with neuropathy. They happened to mom (but not from Taxol); fortunately, by the time her neuropathy appeared, she was done with the chemo that was causing it. And because she was done with that chemo, her body was able to start healing immediately.
Fatigue is with me but my afternoon naps (1-3 hours!) and a long night's sleep keep me doing pretty well with that. I wear out easily but I also can function without feeling like I'm moving through molasses all the time. I actually had a couple of hours Friday where I just felt -- almost normal! It was amazing! It's good to be able to enjoy activities, being out and moving around, etc.; it's nice to just chat with someone without it draining me of what little I have.
Of course, the chemo caught up with me Saturday and I slept a lot over the weekend, but it was OK.
Now to just get rid of this tingling in my fingers.
I have 9 more treatments to go. I'm being monitored closely.
On with the show!
skip to main |
skip to sidebar
So often,
we believe that we have
come to a place
that is void of hope
and void of possibilities,
only to find
that it is the very hopelessness
that allows us to hit bottom,
give up our illusion of control,
turn it over,
and ask for help.
Out of the ashes
of our hopelessness
comes the fire of our hope.
Anne Wilson Shaef
Walking through the fire
Daisypath Anniversary tickers
When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.
Henri Nouwen
Henri Nouwen
Your vision will become clear only when you look into your heart...
Who looks outside, dreams.
Who looks inside, awakens.
Carl Jung
Who looks outside, dreams.
Who looks inside, awakens.
Carl Jung
Treatment Outline
Last chemo: Sept. 23, 2009 -- Done!! WOO HOOOO!!!!!!
Surgery, Oct. 29, lumpectomy with removal of 17 lymph nodes. Biopsy results: all negative. WOO HOOOO! again! The surgeon said I was in a group (of women with my cancer type, stage, etc.) of only 10% that comes back totally clear and negative. Happy dance!
Radiation begain Dec. 7; I had daily (weekday) treatments for 38 treatments, with a few days off for holidays and when my mom died.
Herceptin continued until I had "minor heart impairment." I'm on a beta blocker and doing well.
I'm on an estrogen-blocking med for five years. Update, 2015: I've been put on it for an additional five years.
Surgery, Oct. 29, lumpectomy with removal of 17 lymph nodes. Biopsy results: all negative. WOO HOOOO! again! The surgeon said I was in a group (of women with my cancer type, stage, etc.) of only 10% that comes back totally clear and negative. Happy dance!
Radiation begain Dec. 7; I had daily (weekday) treatments for 38 treatments, with a few days off for holidays and when my mom died.
Herceptin continued until I had "minor heart impairment." I'm on a beta blocker and doing well.
I'm on an estrogen-blocking med for five years. Update, 2015: I've been put on it for an additional five years.
What lies behind us and what lies before us are tiny matters compared to what lies within us.
Ralph Waldo Emerson
Ralph Waldo Emerson
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It is not just in some of us; it is in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
Marianne Williamson
Marianne Williamson
So often,
we believe that we have
come to a place
that is void of hope
and void of possibilities,
only to find
that it is the very hopelessness
that allows us to hit bottom,
give up our illusion of control,
turn it over,
and ask for help.
Out of the ashes
of our hopelessness
comes the fire of our hope.
Anne Wilson Shaef
When you are joyous,
look deep into your heart
and you shall find it is only that which has given you sorrow
that is giving you joy.
When you are sorrowful
look again in your heart,
and you shall see that in truth you are weeping
for that which has been your delight.
Kahlil Gibran
look deep into your heart
and you shall find it is only that which has given you sorrow
that is giving you joy.
When you are sorrowful
look again in your heart,
and you shall see that in truth you are weeping
for that which has been your delight.
Kahlil Gibran
The willingness to accept responsibility for one's own life is the source from which self-respect springs.
Joan Didion
Joan Didion
As your faith is strengthened you will find that there is no longer the need to have a sense of control, that things will flow as they will, and that you will flow with them, to your great delight and benefit.
Emmanuel
Emmanuel
Peace comes from within your own heart and mind, not from some outside source, and when you refuse to be disturbed by things about you, life will flood your being with dynamic energy.
Peace requires us to surrender our illusions of control. We can love and care for others but we cannot possess our children, lovers, family, or friends. We can assist them, pray for them, and wish them well, yet in the end their happiness and suffering depend on their thoughts and actions, not on our wishes.
Jack Kornfield
Jack Kornfield
I pray to the birds.
I pray to the birds
because I believe
they will carry the messages
of my heart
upward.
I pray to them
because I believe
in their existence,
the way their songs begin and end each day - the invocations and benedictions of Earth.
I pray to the birds
because they remind me
of what I love
rather than what I fear.
And at the end of my prayers,
they teach me how to listen.
Terry Tempest Williams
I pray to the birds
because I believe
they will carry the messages
of my heart
upward.
I pray to them
because I believe
in their existence,
the way their songs begin and end each day - the invocations and benedictions of Earth.
I pray to the birds
because they remind me
of what I love
rather than what I fear.
And at the end of my prayers,
they teach me how to listen.
Terry Tempest Williams
Faith is the bird
that feels the light
And sings
when the dawn is still dark.
Rabindranath Tagore
that feels the light
And sings
when the dawn is still dark.
Rabindranath Tagore
Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it.
Groucho Marx
Groucho Marx
We have no right to ask when sorrow comes, "Why did this happen to me?" unless we ask the same question for every moment of happiness that comes our way.
Author Unknown
Author Unknown
Do, or do not. There is no try.
Yoda
Yoda
If you're going through hell, keep going.
Winston Churchill
Winston Churchill
FAQ's
I seem to get some questions often, so I'm going to address a few of them here. I'll update from time to time, too. Unless you read otherwise in a post or email, these things hold true:
1. I'm still working and plan to do so throughout treatment. My oncologist, his staff, my boss, and I all see no reason I can't continue, although I may have to make schedule adjustments from time to time. I have bills to pay so I don't really have the option of quitting anyway.
2. Mom is holding her own. I have to put my own health first right now but I'm going to do everything I can to help her. And she's doing what she can to help herself and to help me as well. We're working as a team, even if it's a cancer-ridden, chemo-taking, sometimes bumbling one!
3. As I've shared with most of you, and I want to keep emphasizing, don't feel like you have to wait to hear from me. In fact, sometimes it helps when you take the initiative, because I may not always have the energy to do such a simple thing myself. Call or email any time -- you can't disturb me -- if I'm too tired or otherwise unavailable, my cell ringer is off; and I answer email as I can and know you understand if it's not always in a timely manner.
4. My last A/C treatment was June 17. Taxol has begun and in spite of what's normal, for me it's been harder than the A/C. Lots of immediate, significant side effects that need frequent adjustments to control. I had to drop one week of Taxol and am on reduced doses for the duration of treatments because of the severe neuropathy I'm getting. Herceptin began with the taxol and continues for a year; surgery sometime in the fall. Radiation, maybe.
5. I was told not to expect hair growth until after the Taxol is over, but I'm getting white (! my hair was only partly gray when this started!) and spikey regrowth right now (late August). It may or may not fall out as the Taxol continues, but whatever! It's been an amusing part of the journey for me to go bald, see funny regrowth, etc. I still don't expect any real hair length until next spring. Going bald has it's own freedom, and I love the feeling of wind on my scalp, but I can't say I feel like bald is "beautiful" in my case!
6. This isn't an FAQ, but as a reminder: I prefer you do not share this blog with others unless you ask me first. I probably won't mind your sharing, but I'd rather be asked first. I consider this a personal journey, and while it's no secret that I'm dealing with cancer, I prefer to chose who to share details with. Thank you for understanding.
7. For those asking about my photos, I mostly post them on my nature blog. However, some of the photos here aren't mine and I don't want to take credit for them. Ask if you're curious -- I haven't been taking the time to tag what's mine and what isn't. If it's really good, it probably isn't mine! :)
8. Details on my diagnosis: localized, no lymph nodes involved, HER2+, ER slightly+, PR- (those last three have to do with cancer receptors -- the positives mean more treatment options, so are a good thing in their own way), IDC, stage IIa, I'm probably forgetting a piece but most of this won't mean much to most anyway and those are the highlights.
9. I'm not afraid of the cancer. Not too thrilled about the side effects of the chemo, but I'm not afraid of the cancer! My prognosis is excellent; I have confidence that I will beat this and have an incredible circle of support: oncologist, staff, counselors, support groups, family, friends, even friends of friends... (listed in no particular order, as all of you are prime!)... thanks to all of you, I will get through this! Hugs to every one of you!
1. I'm still working and plan to do so throughout treatment. My oncologist, his staff, my boss, and I all see no reason I can't continue, although I may have to make schedule adjustments from time to time. I have bills to pay so I don't really have the option of quitting anyway.
2. Mom is holding her own. I have to put my own health first right now but I'm going to do everything I can to help her. And she's doing what she can to help herself and to help me as well. We're working as a team, even if it's a cancer-ridden, chemo-taking, sometimes bumbling one!
3. As I've shared with most of you, and I want to keep emphasizing, don't feel like you have to wait to hear from me. In fact, sometimes it helps when you take the initiative, because I may not always have the energy to do such a simple thing myself. Call or email any time -- you can't disturb me -- if I'm too tired or otherwise unavailable, my cell ringer is off; and I answer email as I can and know you understand if it's not always in a timely manner.
4. My last A/C treatment was June 17. Taxol has begun and in spite of what's normal, for me it's been harder than the A/C. Lots of immediate, significant side effects that need frequent adjustments to control. I had to drop one week of Taxol and am on reduced doses for the duration of treatments because of the severe neuropathy I'm getting. Herceptin began with the taxol and continues for a year; surgery sometime in the fall. Radiation, maybe.
5. I was told not to expect hair growth until after the Taxol is over, but I'm getting white (! my hair was only partly gray when this started!) and spikey regrowth right now (late August). It may or may not fall out as the Taxol continues, but whatever! It's been an amusing part of the journey for me to go bald, see funny regrowth, etc. I still don't expect any real hair length until next spring. Going bald has it's own freedom, and I love the feeling of wind on my scalp, but I can't say I feel like bald is "beautiful" in my case!
6. This isn't an FAQ, but as a reminder: I prefer you do not share this blog with others unless you ask me first. I probably won't mind your sharing, but I'd rather be asked first. I consider this a personal journey, and while it's no secret that I'm dealing with cancer, I prefer to chose who to share details with. Thank you for understanding.
7. For those asking about my photos, I mostly post them on my nature blog. However, some of the photos here aren't mine and I don't want to take credit for them. Ask if you're curious -- I haven't been taking the time to tag what's mine and what isn't. If it's really good, it probably isn't mine! :)
8. Details on my diagnosis: localized, no lymph nodes involved, HER2+, ER slightly+, PR- (those last three have to do with cancer receptors -- the positives mean more treatment options, so are a good thing in their own way), IDC, stage IIa, I'm probably forgetting a piece but most of this won't mean much to most anyway and those are the highlights.
9. I'm not afraid of the cancer. Not too thrilled about the side effects of the chemo, but I'm not afraid of the cancer! My prognosis is excellent; I have confidence that I will beat this and have an incredible circle of support: oncologist, staff, counselors, support groups, family, friends, even friends of friends... (listed in no particular order, as all of you are prime!)... thanks to all of you, I will get through this! Hugs to every one of you!
No comments:
Post a Comment