Quick Update!

I've noticed that people are still finding my blog and it's been over four years since I posted.  In case anyone wonders I thought I would mention that I am, indeed, 5 years, 7 months, and 3 weeks officially NED; I am working full time at a job I love; I know that I'm here when many aren't, and I move forward with appreciation.

I still go through acute anxiety with each mammogram ("It'll get better with time," they said. Ha!)  but have graduated to once-a-year mammograms and my surgeon officially released me from seeing him this spring, after 5 years of follow-up.  I still see my oncologist twice a year.  I have neuropathy in my toes and some other slightly annoying side-effects from treatment but they are slight and nothing to complain about, mosquito bites in the overall scheme of things.

It took me a long time to get where I am post-treatment, some of that physical recovery, a lot more of it emotional and mental, but there isn't a day when I'm not grateful to be where I am.  I still have things I'm working on but I'm in a place where I know I can do it.

In short, I'm a pretty happy camper.  I delight in simple things, like fireflies and the moon at night and the clean air after a rain. I love reading, seeing people I love experience life's joys, laughing with a baby.  I'm still picking up pieces and the puzzle that is emerging is a new one but it's fun to see it develop.

If you're reading this, I hope what I've shared gives you one main thing:  hope.  Hope is something I lost for awhile during this journey, not because of cancer but because of everything I was dealing with at one time.  But I feel it again, and I'm grateful.  As I've posted elsewhere in this blog:

Faith is the bird

that feels the light

and sings

when the dawn is still dark.

Rabindranth Tagore

I am so happy to feel the light again -- I hope you feel it, too!

Creating the Symphony for my Happy Dance

To live content with small means;

to seek elegance rather than luxury,
and refinement rather than fashion;

to be worthy, not respectable,
and wealthy, not rich;

to study hard, think quietly,
talk gently, act frankly;

to listen to stars and birds,
to babes and sages,
with open heart;

to bear all cheerfully, do all bravely,
await occasions, hurry never;

in a word to let the spiritual, unbidden and unconscious,

grow up through the common--this
is to be my symphony.

William Henry Channing

I love this quote.  What a beautiful credo for living.  How easy it is to confuse fashion with refinement; luxury with elegance; richness with wealth.  How wonderful to listen quietly and with an open heart, and to be gentle and kind. 

And how grateful I am to be here to continue to compose my own symphony, chose the instruments and melodies of my life, even when I weave new and unexpected melodies into that symphony. 

 

I had yet another six-month mammogram last week.  To those who've never had cancer, a mammogram can be a slightly nerve-wracking experience (or worse or better, depending on your inclinations to anxiety); to those who've been through any level of treatment for breast cancer, you know that no matter how sure you are that everything is OK, and how much you know in your head and your heart that it will be fine, and how calm you feel going into the exam room... there is a bubble of fear that sits there and expands until the technician comes out and tells you everything is OK.* 

I actually thought I was doing well leading up to this mammogram -- my third since treatment ended.  But as I walked into the exam room that bubble of fear expanded and I had to fight to not cry.  I knew with all my heart I was OK -- but the fear was there anyway.  It's impossible to describe, and I don't have the words -- at least at this moment -- to explain how impossible it is to control the nerves and the anxiety.  The only people I know who get it are those who've been through breast cancer.   No amount of meditation, belief, prayer, yoga, running, denial, whatever, makes it go away.  There's an extra layer of anxiety, a few notes of suspense, that are added to my symphony that day.  A Twilight Zone variation creeps in quietly in the background -- or even, at times, a jarring bit of "da dumph, da dumph" from Jaws.

We all know there is no cure for breast cancer (and if you don't know that, please, educate yourself).  We all know that no one who's had it has any guarantee that it will or won't come back -- only statistics -- and no matter how much the statistics are tipped in your favor, none of us are numbers, we're people.  I've seen a woman with stage 1 breast cancer with incredibly good survival odds find out a year later she's stage IV; she quickly passed away, despite a hard fight to survive, leaving daughters ages 2 and 14.  I know stage IV people who've lived with cancer for years.  We're people, not numbers.  We're people who've been through an experience that forever changes us and who live with a change in our melodies.  Our symphony is rearranged in a heartbeat, by our own hands, by our own emotions, by our own choices, and carries themes and variations that can't be written by anyone else but are recognized by others for what they are;  beautiful, sad, sometimes full of fear, sometimes joyous.  Notes written with a depth and complexity that is new.

And yet, those notes are only one small movement in a much larger symphony, with any luck at all. 

I have today to continue to write my symphony, and I try to write themes of gratitude and joy.  Of quiet, and gentleness.  And as I move forward, after 6 more months of NED, I add another variation, a light movement... a happy dance. 

~~~~~

*for those who don't know, after you've had breast cancer, every mammogram is a diagnostic mammogram.  That means two things:  one, you get the results before you leave; and two, if there are any anomalies, they immediately follow up with more testing.  It's good to not have to wait for results, but a bit unnerving to know that extra time is scheduled for you to do more testing in case of a problem.

Gift

The most authentic thing about us 
is our capacity 

to create, 

to overcome, 

to endure, 

to transform, 

to love, and 

to be greater than our suffering.

Ben Okri

When I was in my mid-forties, a friend of mine found out she had pancreatic cancer.  The word "cancer" strikes fear into almost anyone's heart, but couple it with "pancreatic" and for the most part there's not much room for hope.  Lee was given "maybe a year" and that's about what she got -- eleven months.  I was really blessed to be part of her last eleven months; we not only became extremely close friends, but I was also a primary caregiver.   It was one of the most difficult, painful times of my life, and also one of the best. It's truly an honor and a gift to share time like that with someone.

I wasn't a saint.  I never felt like I was sacrificing something, or doing something special.  It was like it was given to me to be part of her life and I simply never questioned it, even though it became an overriding  part of my life, while she was alive and for some time after, as I worked through my grief.  It was something I was supposed to do and so I did.

She died when she was 50.  I was 46.  She was young, but I realized there are no guarantees, and I swore that for every year I lived past 50, I would be grateful, and know that I got something my friend never had. 

That's the kind of vow you make when you're in the midst of emotions, and I knew even then that I might start to take my life for granted after some time and distance from my experiences with her.

But.

I've never forgotten, and never not been grateful.  And this year, when I woke up on the morning of my 59th birthday, I didn't think, "Ugh, I'm one year older!  Ugh, I'm one year away from the big 6-0!  Ugh, I'm getting old!"

Almost the very first thought I had was, "Wow, I'm 59!  That's nine years more than Lee got, and I'm really happy to be here."  My own cancer has, of course, strengthened this outlook, but much of what I went through with my own cancer wasn't new -- it was simply reinforcement of something I already knew and felt.

I can't even take credit for having such a good attitude.  Like my time with Lee, the gratitude has been a gift, and another thing to be grateful for.  Every day isn't a cake walk, nor am I at my best every day.  But I know every day is a gift, and when I hear the red-winged blackbirds sing as they return for another year, my heart sings to be here to share that year with them.

Reflections

Every new year people make resolutions to change aspects of themselves they believe are negative.  

A majority of people revert back to how there were before and feel like failures.  

This year I challenge you to a new resolution.  

I challenge you to just be yourself.

Aisha Elderwyn

   

It's easy to find flaws in one's self, and in others.  I've certainly never had a shortage of things about myself I was unhappy with, things that needed "fixing." And of course there's nothing wrong with wanting to be better.  But I'm not sure that focusing on flaws is always the best approach.

There's reason to look for the good, too -- to appreciate and be yourself.  To look for the uniqueness, the skills, the talents that make up you, and develop those.   

I think back on how much my life has changed in the last few years, and it gives me touchstones, where I was and where I am now. I like to see those changes; it helps me realize how far I've come.  Even more than looking back, though, I like the joy of each day, and of looking forward. 

Still, I'll never entirely leave breast cancer behind, even if I die with no recurrence; ask anyone who's been through it.  It becomes a part of who you are.  Only a part, but still, a part.   It will never be a friend or a gift (I just can't call cancer a gift. Really?  It's something you would wrap up and give to a loved one?  I don't think so.).  But it has introduced me to a sisterhood of women who know what it's like to stare at our own mortality and cry, and then show up anyway, and walk through the fear. It's given me an ever-deepening appreciation for the spirit and courage of people, and for the things that make each person uniquely themselves.

Most of all, it's a part of my life I can embrace instead of deny.  Every day I see the scars.   They remind me of my cancer, yes; and some days they bring back memories of treatment.  Only as I gain distance am I getting an appreciation for just how difficult and horrible that time was.  But most days  I don't dwell on cancer; it gets little more attention than the passing glance at my scars in the shower.  I'm reminded that cancer and that experience is part of me. Like all experiences, it has impacted me.  And I've chosen to take that experience to focus on what is best in my life and shed much of what isn't. 

And I'm reminded of my strength.  I'm reminded of my faith, my belief in my ability to get through things -- even cancer -- and come out on the other side.  Scarred, perhaps, but also stronger and hopefully a little better, a little more compassionate, a little more understanding, a little more patient.  Hopefully also a little more myself:  a little more appreciation for the parts of me that are unique and mine to develop and cherish, and a little more appreciation for the parts of me that I have in common with others, and with the universe.

We spend January 1 walking through our lives, 
room by room,

drawing up a list of work to be done, 

cracks to be patched.  
Maybe this year, to balance the list, 

we ought to walk through the rooms of our lives... 

not looking for flaws, but for potential.

Ellen Goodman

I can't imagine I will ever stop looking for flaws in the rooms of my life, but I hope I can focus at least as much on the potential and the good.

Here's to a year of health, joy, and potential for us all!

Being Friends with NED

Today I had my second post-treatment diagnostic mammogram.  These will be part of my life, every six months, for four more years.  I'm grateful for the oversight and tracking.  I'm also aware that the anxiety that goes before these tests is normal, and for many women, decreases over time.  And I also know that the risk for a return of breast cancer never goes away, and so some anxiety is natural.  And I confess, after being told I would only have to wait ten or so minutes for my results, and that ten minutes turned into 45, I was feeling plenty of anxiety!

But I'm doing a happy dance, glad that one year after first being declared NED ("no evidence of disease," what they once termed "in remission."  Semantics.  Potato, potahto), I'm still showing no signs of cancer!  A milestone that I am celebrating by having my port removed in a few weeks! 

An education note for those who may not know, NED doesn't mean cured.  As has been pointed out many times by many, there is no cure for breast cancer.  Some cancers are considered cured if you reach a certain time away from disease, because statistically, your chances of that cancer returning after so many years drop dramatically.    This isn't true with breast cancer; it can return 1 year, 3 years, 18 years out. 

But for today I'm NED, I'm happy, and I'm moving forward!

~~~~~~~

Some people have asked why I haven't been updating more often.  Here's why:  Yes, I still have struggles and some issues.  I'm still working on getting energy and strength back, still working on getting my heart rate and blood pressure where they should be, still dealing with sometimes painful side effects of one of the cancer-blocking meds I'm on.  But these seem like relatively minor issues at this point in my life.  Not that they aren't frustrating issues -- but I just can't see complaining.  Or even, most of the time, reporting.  I'm tired some, but I'm happy a lot, and I'm finding joy daily.  And for me, for now, that's what's important.

I'm going to go find some of that joy right now with a walk in the woods.

Happy dance, everyone!  

Breast Cancer Needs Your Support!

Two critically important issues surrounding breast cancer treatment/research

Avastin and the FDA

The FDA is considering taking away Avastin for metastatic breast cancer, not for safety reasons, but because current clinical studies didn't show that it extends lives as long as the FDA thinks it should. While the drug doesn't help everyone, many women respond well to it and have been able to continue to enjoy their lives and families.

PLEASE consider signing this petition: Avastin petition

Don't let the FDA take hope and life away from anyone who may need this.

Breast Cancer Vaccine

A second and potentially life-changing petition for breast cancer research:  Help urge Congress to support research of a vaccine against breast cancer developed by Dr. Touhy of the Cleveland Clinic.  It's been shown to prevent and stop breast cancer tumors in mice and needs funding for research with people.  Please help! 

Breast cancer vaccine 

You can find more on Dr.  Touhy's reseach here:

Dr. Touhy vaccine research


Feel free to copy and paste this on your FB page, tweet it, whatever it takes to get the word out!

Rejoicing

Courage begins when we can admit that there is no life without some pain, some frustration; that there is no tragic accident to which we are immune; and that beyond the normal exercise of prudence we can do nothing about it.  But courage goes on to see that the triumph of life is not in pains avoided, but in joys lived completely in the moment of their happening.  Courage lies in never taking so much as a good meal or a day of health and fair weather for granted.  It lies in learning to be aware of our moments of happiness as sharply as our moments of pain.  We need not be afraid to weep when we have cause to weep, so long as we can really rejoice at every cause for rejoicing.

Victoria Lincoln

In other words, don't forget to do the happy dance!

Quiet, quiet

Nothing startling or new to report -- and that's good! Routine and quiet is just fine with me.

My recent heart med adjustment seems to be working much better -- emphasis on seems -- it needs more time before everything is certain.  But at this point, after a week or so of fatigue, my body is adjusting and I'm starting to feel better.  My heart rate isn't lower yet but I think that's just a question of time.  Once we get this dose figured out and make sure my thyroid is where it should be, I'll be in good shape!

It's terrific to feel some energy returning; now I'm able to focus on things like exercise.  On the days it's too hot, I work out inside.  I'm also checking into a local exercise program design for people who have had cancer -- it's co-sponsored by Purdue, where there's a strong cancer research center, and includes awareness of issues that are unique to people who've had cancer.  It might be a really good option for me.  So far, I’ve kept measurable lymphedema at bay, and I plan to keep it so!

So I'm a happy camper, in spite of the hot and muggies, and grateful to be where I am.

Out, damned spot!

Ah, thank you Lady Macbeth (via Shakespeare) for the title to today's post... and the reason for it? The spot on my lung that has been monitored since last fall is gone, gone, gone... yay!   I took a deep breath, said a quiet thanks, and broke into my happy dance.  Finally, no more scheduled tests (well, mammogram in 6 months but that's going to be routine for awhile), no more vague or nebulous things hanging over my head.  I can focus on healing and recovery much more fully now.

I'm currently battling some significant fatigue.  Again. The thyroid meds have helped a little but my heart rate is still much too high and I'm on a third heart med to try to strengthen and slow down my heart.  So far all it's doing is making me feel even more tired but my pharmacist is confident my body will adapt and I'll get past that. I'll give it a little longer; if things don't improve I'm going back to the cardiologist.

Bone and joint aches and pains (from Arimidex) are down some since I upped my vitamin D3.  Let's hope that continues.  Some mornings I walked like an old lady. Painful.

Our weather has gone from pleasant and cool (70's), to suddenly very hot and humid.  Pollen counts are very high for the area and my sinuses are responding with lots of sinus pressure and pain, plus I have swollen glands.  That's OK -- it'll pass -- it's just allergies.

Looks like we're in for a nice Memorial Day weekend.  Enjoy, everyone!  and do a little happy dance while you're at it!

PS  Car update:  I Fed-Ex'ed my car title to the salvage company so my car could be released to them and I could receive my insurance payment... the title was delivered and signed for... and lost once it got to the salvage company.  Idiots.  Apparently a stack of FedEx packages vanished that day.  Idiots.  Things will still get settled, but it's more hurry-up-and-wait.  And a warning:  just because you send something with a tracking number and it gets delivered, that STILL doesn't mean it'll end up where it's supposed to!  I credit my insurance company with the way they're handling all this. For me, it's another frustration over an accident that I had no part in causing, but I just take a deep breath and remind myself that it's small stuff.

I Loves the Happy Dance!

Wooo hooooo!! Happy dance, happy dance!

Diagnostic mammogram came back all clear! Woo hoo!

Next one in 6 months with possible MRI. However, my surgeon was very encouraging, still pleased that I'm one of the 10%, loves my white hair, and told me that my prognosis wouldn't have been any better if I'd had a mastectomy, so I defintely did the right thing. I like a surgeon who can admit that his original advice (which was to have the mastectomy) wasn't the right advice for me. I understand his point of view and reasons for his original thinking but I'm glad I followed my gut on that one.

So.... one more test in a couple of weeks and then the beasties are off my back for awhile!

Happy dance, happy dance!

When Bad Things Happen to Good Cars

T-boned.

A rather flip expression for a not-very-fun experience.

My cute little Saturn is totaled but I'm OK (still debating a trip to urgent care, but I'm waiting to see how much the bruises and aches develop)*, so that's the important part.

Still, it's making me plenty sad that I've lost my car.

To add to the experience, the driver pulled a hit-and-run, but thanks to three witnesses from three other vehicles, the police quickly caught her.  Of course, she has no insurance, which is why she didn't stick around to begin with.

I'm grateful for my own insurance company, who have been very kind in dealing with me, and were johnny-on-the-spot in getting an appraiser to look at my car within a few hours of my calling the accident in.

I'll see my car one more time, to clean it out, and then I'll have to say goodbye.

In other news, 6-month diagnostic mammogram coming up Monday, so keep me in your thoughts.

Our mild and really enjoyable spring continues with a slight cool down over the next few days.  I could take this kind of weather all year!

That's the news from the flatlands.  Watch out for those T-bones!

~~~~

*edited Saturday to add:  no bruises or aches, so I skipped the urgent care trip. I went back to the collision center and cleaned out my car; I cried when I saw it.  But, it's only a car... in the overall scheme of things, just a bump in the road (slight joke unintended) :)

What the Cluck?!

Before your next trip to KFC, read this.  Under the guise of helping cure breast cancer, KFC has partnered with Susan G. Komen for the Cure to donate the whopping rate of 50 cents per each $20 pink bucket of chicken bought.  Don't get me wrong, though, it's not the donation I object to...  this campaign is problematic on many levels, not the least of which is the idea of buying unhealthy food and promoting a cancer cure in the same breath.  It's an empty corporate gesture designed primarily to make KFC look better. 

To understand it best, I quote from a letter written by Breast Cancer Action for people to use as a starting point for notifying KFC and Komen for the Cure about how they feel about this partnership:

"I am appalled by your "Buckets for the Cure" partnership. I share Breast Cancer Action's shock at this outrageous campaign, which uses the breast cancer epidemic to improve the American public's perception of KFC, and increase the company's profits from the sale of pink buckets of chicken...  KFC (with Susan G. Komen for the Cure's blessing) is engaged in one of the worst examples of pinkwashing. A pinkwasher is a company that purports to care about breast cancer by promoting a pink-ribboned product while at the same time manufacturing products that contribute to the disease. In this case, KFC is encouraging people to buy pink buckets of chicken to demonstrate its alleged commitment to ending the breast cancer epidemic. However, KFC's food is unhealthy and much of it is marketed to low-income communities. KFC thus contributes to the significant problem of providing poor food choices for low-income communities in the United States, who disproportionately suffer from poor breast cancer outcomes and other problems that may be exacerbated by an unhealthy diet.

Instead of partnering with a corporation that sells unhealthy food, I believe that Susan G. Komen for the Cure should work with companies that do not contribute to the breast cancer epidemic."

I would like to add that KFC's grilled chicken isn't a better choice than its fried -- the grilled chicken is known to contain carcinogenic substances that contribute to cancer, as reported by Physicians for Responsible Medicine.

It's unfortunate that an organization like Susan G. Komen for the Cure chooses to a support a company that contributes to cancer.

Please do not participate in this campaign.

Well, No WONDER I'm Tired!

I had a lot of blood work done recently and picked up the results this week.  I haven't had a consult with my oncologist or any other doctor about any of it yet but (if you know me well you already know) I will.

In the meantime, my ongoing fatigue makes more sense (not that it didn't already -- nine months of pounding does take it out of your body!).

My hemoglobin and red blood cell counts are both low, which is not unusual post-chemo.  These low counts cause fatigue, and, interestingly, a low RBC count can also cause a higher heart rate, which I still have, in spite of being on two heart meds. Bone marrow cells, which produce RBC's, get zapped by chemo the same as every other cell in your body, and they need time to recover.  I think on that score I mainly need to be patient.  I'm not overly anxious to get on any of the meds that can help this, and it's something that I think will heal on its own.

My TSH is high and my T4 is normal.  Translation:  mild hypothyroidism, which, as you probably know, causes fatigue as well.   It can also contribute to high cholesterol, which has nothing to do with fatigue, but I have a "borderline high" LDL (not good) and a very high HDL (very good), which push my total numbers up to borderline high.  I'm not worried about it since my HDL is so high but I'm thinking now if I can get my TSH under control, that might help with the cholesterol and keep my cardiologist happy.  The cholesterol is something I know I can control without meds but if the thyroid issues are contributing, and I get that under control, so much the better.

The thyroid issues may be age related but are most likely caused by chemo damage. Meds for this are simple and relatively benign and I will be more than happy to take them to help get some of this fatigue under control.  Three hour naps just take too much out of the day!

I also am now in a search for a primary care physician.  The doctor I saw when I lived in the area previously has retired so I have to find someone new.  I have someone I know of who I listed as my PCP and who has been getting all my reports (for a year now!) but I haven't yet been in to see him -- but with all the various parts and pieces of things going on, I think it's time to have a PCP to help with oversight of everything.  And now I have the time and energy to deal with breaking in another doctor :)

In spite of these fairly minor issues, and ongoing fatigue, I do feel better than I did even a month ago. My spirits are great, I've had lots more emotional energy, and my one week post-heart cath restrictions are over, so I'm released to get out there and do whatever my body will let me (although the lymphedema restrictions are life-long so I have to be careful about those!).  But all in all, I'm one happy camper!! So, since yesterday was my last day on exercise and other restrictions, if you want to find me, you'll have to look for the crazy lady in the woods, happy-dancin' with the wildflowers!

Happy birthday, mom!

1934

Happy Dance in a Quote

A friend shared this quote and I love it so much I'm passing it on...

Today a new sun rises for me;

everything lives;

everything is animated;

everything seems to speak to me of my passion;

everything invites me to cherish it.

Anne De Lenclos