Thursday, January 23, 2014

Fat Envelopes

It's college application time around my house - my son has been working hard on essays, answering questions and all that comes with this time of life.  His last application is done, his final interviews are pending, and now....we wait.

He's worked hard his entire school career; his eye has always been on the prize that is college.  He has impressed me with his ability to achieve goals and his foresight in how best to reach them, qualities I don't possess.   We are proud of him and perhaps I brag to my friends a bit too much about him, and if you are under that umbrella, I'm sorry.  To him, I simply assure him that he's done his best, and that is all he can do. The decision of where he goes next is now in somebody else's hands, and to us, it doesn't matter who says yes and who doesn't.  He is a winner no matter what; we'll love him no matter what happens.

In a way, his application experience is much like my experience with cancer.  I have spent the past four years learning as much as I can, studying path reports, learning medical terminology, reading abstracts, doing everything possible to give myself an advantage with this disease.  I talk with others, learn what the treatment norm is; I've taken medical risks, but when all is said and done, what it all comes down to is the decisions of the medical professionals with whom I have entrusted my life.

In spring, Universities will start sending us letters of rejection and acceptance.  I have heard, not having gone to college myself, that when you get a letter from a college, you are hoping for a thick envelope.  A thin one means they are thanking you but saying no. A big fat letter means they have accepted you and now want you to do more paperwork (and probably write some checks).

Unlike a letter from a university, when you receive a report from an imaging center, you are hoping for few pages.  You want the thin envelope.   In the medical world, brevity is good.   Some of my summary reports have been seven pages long - so long doctors have actually waved them around at me saying "Have you seen how big this is?"  Some have only been two pages.

I've saved them, and look at my four inch binder:

(Yes, I did give up on keeping it and just started throwing papers in there; as a former secretary I'm ashamed.....there's that lack of foresight.)

Despite all I've done to try and control the beast that is cancer - the surgeries, the drugs, the travel, the radiation, the hospitalizations, not to mention the hope expended by me, the prayers by friends, and trusting my doctors and nurses,  I had not yet received a thin letter - until now.

I feel like a student who got into Harvard.

Why? I had an MRI in December. I'm having some mid-section pain, left side, and any time you have cancer and tell your doctor anything like that, you earn time in a machine.   You learn not to tell your doctor about minor things, or things that are brand new,  because you know where you'll end up, and not only do I not want to have even more medical tests, I don't want to cost my insurance company money for no reason.  But this pain has been bothering me for months, and it aches quite badly at times, especially when I eat, despite the fact that I'm on dilaudid, so I finally confessed.

Scanned I was.  I wasn't deeply concerned that cancer had spread, as I have been feeling better, more energetic.  I've been off chemo for months, and I feel like I'm emerging from a dream, like I've climbed a mountain in the fog and my head is now peeking into the sunshine.   When my cancer is active, I get sleepy and experience a lack of interest in activities. Now, I am awake 13-14 hours a day  (a lot for me.) While I'm still on therapy, it is not chemotherapy, and the infused drugs I'm doing (Perjeta, Herceptin, Zometa)  are not difficult ones.  I don't need naps, I feel well enough to get out of the house a little. My last bad episode was 6 weeks ago when I spent a week in bed asleep for who knows what reason. (I didn't get up to even pee, for an entire week!)   I've improved since then.  I am accomplishing things again: scrapbooking, crafting, even organizing the room I do these things.  My head is emerging from the clouds.

My only remaining problem is this pain and my non-existent appetite.   I force myself to eat dinner but would probably not eat at all if a human didn't have to - the pain gets worse on a full stomach.  So, what could be causing this pain?  Was my spleen damaged somehow, or is my colon still having issues from the old c-diff problem? Did the radiation path cross my stomach, damaging it?

Well, we still don't know.  But it isn't cancer - I got the thin letter.

The cancer rejection letter - the kind you want.

My MRI report was the smallest I've ever seen - dare I say it looked like a healthy person's report?  This is it in its entirety:

FINDINGS:  There is a nonspecific periportal edema and enhancement which appears centered about a previously treated segment 8 lesion.  There is no evidence of restricted diffusion.  THE MR appearance on arterial and portal venous phase postcontrast images is normal with increased enhancement only appreciated on delayed images.  This could be post therapeutic reactve changes. No other focal hepatic lesions are evident.   There is no biliary dilation.  The gallbladder is normal. The spleen, pancreas, adrenal glands and kidneys are normal.  There is no abdominal lympadenopathy.  The visualized portions of the gastrointesintestinal tract are normal.

IMPRESSION: Nonspecific edema and delayed enhancement in the periportal region that appears to be centered about the segment 8/right lobe treated lesion.  This is nonspecific but is likely post therapeutic change rather than progressive metastatic disease.  

Do you see how many times they said normal?   Do you see that there is no new cancer anywhere in my body?  Do you see they mention the previously treated lesion, but don't mention that it has changed?  Yes, they said no lesions are "evident" rather than exist, but that's okay.  I never expected it to be gone for good. For now, they see what they believe to be post-radiation changes.

Remission (medicine), the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity.

I am a layman, and I have not talked to a doctor about this.  But it seems to me that the cancer that is there is laying low for a while, maybe a good long while.    Sure, cells could be growing in my liver again, or my brain, or spreading in another area too small to see - in fact, that is likely - there is no cure for metastatic cancer.  However, there is no reason to think that I won't live out this year, and maybe even the one after and the one after that. (Yes, I'm greedy.)  My friend Sandy lived 9 years, my friend Jeanne lived 11 years, I just read an article about a woman on her 11th year and still alive - and they had mets in their organs, not bones (which has a longer prognosis).

Why can't I be like them?  Treatments are so much better than they were back when all these prognostic pronouncements were made, even from when I was diagnosed - as an example, when I started there was no Perjeta.  I've been lucky enough to have progressive doctors who have given me the best of care and an insurance company that approves it.

I had a liver resection, which is rarely done. (Yes, cancer grew back but who knows what would have happened if we had not done it?)  I was the first one in my oncology office to get Perjeta.  I had SBRT (gamma knife).  They are not writing me off.

Why write myself off?

I haven't been this hopeful since I was approved for my resection.

Dare I say that I now think I will be around to see the thin and fat envelopes that come for my son?  Dare I think that I can even set him up in a college dorm room somewhere (assuming he gets at least one fat one) and that I can be a functioning grandmother when my stepdaughter's baby is born, and maybe even go to San Francisco, and not make them always come here?   Maybe I can see him or her grow into a toddler, buy trucks or dolls are any kind of gender neutral toy the child may want.  (It is San Francisco, after all.)  Maybe I can see my grandchild be shy and hide behind mom when I show up, or be outgoing and run to "Grandma!" (or whatever my name will be)  knowing there will be toys.  I don't believe I will be there for the school years, but maybe toddler is not out of reach?

I'm still left with mid-section pain, of course.  I suspect that feeling good has made me move more, which has exacerbated the pain.  It's logical to state that you can't have been through what I've been through medically without some lasting effects on nerves and muscles.  I am still dealing with that long-ago shoulder problem, which I was told would never heal and which so far, has proven true.  I cannot reach over to grab something off my nightstand, I can't sleep on my stomach as it causes muscles in my back to spasm, and I now suspect that maybe the mid-section pain I am having is related to that.  If it's not cancer, if it's not spleen, than it is muscle or nerves.  Maybe cutting out part of my liver or stereotactic radiation damaged nerves or tissue that can't be seen on imaging.  It's hard to say - muscle or nerve - but I do know that I won't be complaining to my doctor about this pain for a while. I get pain meds that help so if it isn't cancer growing, I'll deal with what wreckage is left and be damn happy about it.

In fact, I think the idea of living a full year, something I hadn't dared to imagine since 2011, will cause me to make a New Year's resolution:  loosen up my body, learn some stretching techniques,  get in some sort of sick person healthy shape.  Maybe there is a yoga class for people who have had surgeries and can't use their shoulders or core muscles properly.  Maybe I should just take walks.  Chemo is hard on muscle tone and I have zero, like an old person.  My doctor is insisting that I gain 7 pounds by the next time I see him, so I need to try to eat.  .  Healthy people - people in remission - they eat.  I might take a vacation with my husband.  Maybe I'll write that book everybody nags me to write.

I know, it's crazy.  Most people with end-stage cancer don't get to dream like this. It feels foreign to me now, like I'm doing something wrong.   But....

I got the thin letter.  I got accepted, at least for a short time, into the world of health.

Now we need to wait for my son's big, fat letters.

Tuesday, January 21, 2014

Thank You - and a Recipe

I heard from Healthline and they have declared me the winner of the 2013 Best Blog Contest. I again thank you all from the bottom of my heart.  (The top too, why not?)   Because, it wasn't me who won, I just get the cash!  (Well, actually, my son's future college will.)  It was you, with your support and loyalty, voting every day, who handed me the win.   In return, all I can be is grateful, and I am.  It is very hard to describe the warmth I felt as I saw people rooting for me all over the internet, cheering me on, pushing their networks to vote. Indescribable really.

I realized that however the contest came out,  I was a winner.   I don't want to be maudlin but this is something I am going to remember no matter how sick I get - that there are people out there who have never met me and never will, who are rooting me on.  It is quite an uplifting thought and one that will see me through some hard times to come.

It was a hard-fought race with a lot of technical difficulties (I couldn't even vote for myself using facebook) and I won by a hair at the very last minute, which was very exciting and a bit stressful!  I congratulate Maria's Nutritious and Delicious for going neck-and-neck with me to the bitter end. She was a worthy opponent and I wish her the best.  She has a nice site and great recipes, and I hope you'll check her out, as well as the other contestants, who all deserve to be there.  There are some amazing blogs in that list, and I hope in the coming days, you'll take some time to browse through them.  And, of course, continue keeping up with Healthline as they have articles on a wide variety of health topics.  I often go to them first when I am trying to figure something out.

I promised you all a recipe if I won.  So, below is one I keep on my kitchen wall:

It's not a recipe without chocolate, yes?  :)  

Thanks, my friends.

Back to cancer as usual!  :)  

Monday, January 20, 2014

Last Few Hours to Vote!

This is the last few hours to vote or me in Healthline's Best Blog Contest.  It ends tonight at midnight and I'm neck and neck with my competition.  If you have enjoyed my blog, please vote.

You can vote with facebook or twitter, either one.  It will NOT spam you or use your account in any way so you can feel safe letting them access it.

Now is the time!  Thank you!

Head on over to my facebook page to see a video I made thanking everybody who voted.  I can't seem to insert it here so you can find it on  

(FYI:  I am going to delete this blog post tomorrow and put up a proper note  - but we have until midnight CA time so vote!)

Friday, January 17, 2014

Anastasia Kuba - Artist and Photographer

As a person who is innately shy, I rarely feel comfortable meeting new people.  A psychoanalyst might say that because my biological family was incredibly picky and constantly looking for my faults, I came to believe that  everybody I meet is trying to do the same. My parents, my mother specifically, had a very narrow definition of what was acceptable to her, down to what facial expressions she tolerated.  I never met the criteria, and neither did many in her life. Naturally, this was merely an expression of her unhappiness in life, but to a child, it felt quite different. To this day,  I reflexively clench when I meet people and have to consciously remind myself that they are not there to pick me apart or trick me into saying something they can attack - that they have their own stuff to deal with.  Not everybody grew up the way I did, but everybody has something. Still, meeting new people is sometimes a mental exercise for me.

Every once in a while though, I meet somebody I feel instantly comfortable with.  With this person, one can drop  pretensions,  can open up, and relax.  It is rare for me; it may be more common for you.  But these special people are ones we all encounter from time to time and are universally understood to be instant friends.  What quality do they have that causes everybody around them to feel accepted?

In Anastusia Kuba's case, I think it is a willingness to be open, understanding, non-judgmental, something that you sense right away upon meeting her.  It is also her ability to smile easily, to discuss the difficult subjects while believing you will be interested too.  She takes you on her ride, and you are happy to be taken.  You can relax and let go.

Which leads right into her career:  she is an artist, specifically, a photographer.  She makes her living taking boudoir portraits (and pretty fantastic ones) in San Francisco, but she also has done photos for magazines and she somehow ended up taking sensitive pictures of cancer patients.  She also just finished a series of people riding trains across Russia, which is undeniably compelling.  As she said, she likes taking pictures of people at a crossroads in their lives, exploring that richness and their new reality with her camera.  I believe part of her artistry is the part she may not know about - the part that makes those who encounter her feel comfortable and let her in. Because she is who she is, she may get the shot nobody else can.

I met her because she contacted me and asked to take my picture.  My inclination, as always, was to say no.  But I had long ago decided that if any opportunities for an "experience" came my way because of this blog, I would take it.  Unfortunately, for much of the past four years, I've been sick, and while a few experiences have been offered to me, I have had to decline.  Anastasia contacted me at the right time - during a period of health and energy.  So I said  I didn't want a boudoir photo, as there isn't much "boo" in my "doir" these days, if you get my drift.  I made all the excuses most would.  I'm too ugly, I'm not a model, my house is a mess.   But then, I googled her.  I saw that she is not a picture taker, she doesn't do Lifetouch portraits - she's a real artist.   I remembered that long ago promise to myself and I changed my mind.  I took a leap of faith and invited her to come; I wanted to see myself through her eyes.

The photo of me with my dog, above, captures me in a reflective state, an unusual photo.  When I see a camera, I grin.  It is my mask, my defense.  Anastasia caught me petting my dog as I was thinking about what she had to say.  Anastasia does not talk frivolously and she gives you a lot to think about, while at the same time, she seems completely charming and even bubbly, a rare combination of fun introspection.

 Below are the photos she took of me, and of my family.  As you can see, they are beautiful and ones I will cherish for a lifetime.   She gave me a gift but more than that, she gave my family a gift.  When I'm long gone, they will have these photos to look back upon.

My husband and I have been married 19 years

Just smilin'

He's in this with me

My family, none who thought they'd have their photo taken and yes, I was cold!

The one on the left is the college bound child we have been raising money for

Anastasia wrote an artist statement which I've included below.  And it is deep, but oddly enough, it it is what I was thinking when I refused her offer, and it is where I am when I become afraid to meet new people, and it is where I am trying to get now that I have little time left.   So she does understand, which also is why she takes such true pictures.  Artist meets subject in a beautiful way.

Anastasia told me that my photos are mine to do what I want with, and I could write about her or not, it was up to me, so this was not a trade. It was a gift from her, and now I hope to give back.    After seeing the pictures, I wanted to and I suggest you contact her.  You can book Anastasia for photos still.  And, if you have cancer, especially metastatic cancer, this is a cost you can justify and a gift you can give to yourself and your family.  This is not a $10.00 photo with a grey mottled background where you plaster a fake smile on.  Not that there is anything wrong with those, but with Anastasia, you will get something ephemeral and wonderful as in the photo with my dog - she might capture you in a way you aren't used to seeing.  Please check her website and see the full range of her photos, you will be awed at what she sees through her lens.

If you are a woman post-mastectomy, then I can recommend that maybe you consider a boudoir shot, nude or not, something that will be symbolic of your effort to recapture what surgery did (not) take away from you.  A photo is a way reclaim your new body as your own.  And, of course, for we metastatic women - we should leave something like this behind for our family.

I recommend you do it before she becomes like Annie Liebowitcz and too well-known for us regular souls. Because, I suspect that will be her trajectory in life - if that's what she wants, of course.

Anastasia says she will travel anywhere, in fact, she likes to travel.  You can reach her at anastasia.kuba AT gmail DOT com, or phone: 415 535 4960.


There was a moment in my life when I was done mourning the person I thought I was, that I thought I should have been, the changes I was hoping I would not have to go through.  I was ready to accept the woman I am, the body I have and the changes I went through.

And then I had a duel mixed feeling - so if I accept, does it mean I give up? Does it mean I settle? At the same time I felt a great relief from feeling that I've been consistently failing. If settling meant I had to stop beating myself up for the things I could and could not control, I was ready to settle. Acknowledging the present situation as-is and without judgmental labels only meant that I stopped denying certain parts of my life story and acknowledged the whole me. The whole entire me.

This is the opposite of settling, this is gaining. Gaining the whole me, taking back the parts I am used to denying, learning not to care and recognizing all the options that are available to the real me, not a cardboard cut-out me.

I want to be seen. I want to be heard.
But I am still afraid sometimes that if I will truly see myself, I will find a person who does not deserve to be loved. And I am so convinced that all the people who love me only love the image of me I have been crafting and presenting. They don't really know who I am or they would stop loving me.

 This constant search for balance led me to my present work. I am seeking and finding people who are on the same path as me. And I believe that to get to the point of truly seeing, loving and accepting myself unconditionally, to TRUST there is beauty in me, I must believe and trust there is beauty in all people. To see the true value of this moment, I must trust there is a true value in every moment.

And it is not easy.

The moment I tell myself that I love and accept myself; that I am ready to see and embrace who I really am is also a moment of a great vulnerability.;I am afraid that once I see, all my fears will materialize. And my new, self-loving, self-accepting person will disappear in a face of the harsh "reality".

So what does it all have to do with photography?
I believe that compassionate photography, just like any compassionate acknowledgement is a powerful tool. I think about portraiture as one more way to be real, to be true, to be you, to be honest and to see.. I imagine it as a mark of a point in life, as evidence, as a witness, as an adventure.

 I am convinced that beauty is a property of all people. Not only young and healthy. I think the conventional idea of beauty is not only deeply limiting to the point of ignorance, it is harmful. It causes us to question if we are good enough to even exist.

 In the course of past 3 years I photographed a lot of people with cancer. Not because they have cancer. But because this is a moment of a huge transition that brings all these questions of acceptance and love to the surface.

 When I am taking photos, I am not looking to photograph cancer. Or body. Or sensuality. You are not an object, you are a person. Unique, sexual, sensual, special, loving, adventurous, free-spirited and worthy. My intention is to step back and to allow myself to see the whole person. And in my experience, the whole person is always, always larger then cancer. I don't ignore cancer, but simply focus on the person. And then cancer becomes what it is - a part of the story.

Announcing.....Erin Condren Contest Winner

I ran all the names through it picked a #1 for me.

And it is.........drum roll........

1.  RubyT January 16, 2014 at 1:04 PM

Congratulations Ruby T.  Please email me at with the email address you want the gift certificate sent, and I will send this to the Erin Condren people.  

This was a hard contest for me - I wanted every single person to win a beautiful planner or item from their site.  

Here is a referral code to use if you decide to buy one anyway.

And, don't give up, I am going to have a contest again next week, for a gorgeous mastectomy bra.

Monday, January 13, 2014


Many of you who follow me also follow Lisa Bonchek Adams.  She, like me, has blogged her cancer experience.  She, unlike me, also tweets her day-to-day life.  (In the interests of full disclosure, long ago I somehow linked up my facebook to my twitter account, so it may appear that I'm tweeting but I'm not, I'm posting on facebook.  I am far too wordy to use that medium, and finally, I don't understand the system.)

Lisa and I overlap in Cancer Space.  We both have mets, she to bone (now spread to spinal canal), me to liver. We both have been through the wringer, and we both are writers.  Our styles are a bit different.  She writes in poetry, and I write in childish deathbed humor.  We both are very anti-pink ribbon and anti-awareness.  We both believe in metastatic advocacy.  We both dislike the warrior terminology associated with our disease and have been public about that.

We both have come to look at our outreach online as something more than it started out to be.  I started this blog as a way for far-flung family and friends to keep up with what was going on with me without having to actually talk to anybody.  The truth is that my parents, now gone, were alcoholics, and I didn't want to have slurred conversations about my cancer and drunken opinions about my treatment, at least any more than I had to.  Call me selfish.  It worked, they relied on my blog for information and I only heard a couple times that I shouldn't do reconstruction.

Never in my wildest dreams did I think I'd receive a million and a half hits.  This blog has turned into something much bigger than myself.  Daily, I get emails, messages, and notes from people who have been newly diagnosed or who have had friends or family diagnosed.  They google cancer, find me and they ask me what they should do, what questions to ask, and a variety of things related to cancer.   I'm the Ann Landers of Cancer Etiquette, I guess.  Or maybe Caroline Hax, she's much better.  Anyway,  I spend at least an hour a day answering emails from people who are afraid.   Basically, I try to offer hope.  I have lived for 4 years, they can too - I believe.

Because of the communications I receive, I think that I have a platform that helps people, although I did not intend that when I started. I definitely feel obligated to continue; this is not only about me.

Lisa also believes that about her own social media status.  In fact, it is impossible not to think that way with the kind of responses we get to our writing.  It is the reader who directs the writing, and not the other way around.  Unless, of course, it is the wife who directs the writing, as in Bill Keller's case.  More on that in a sec.

On the darker side, we also know that there are some who are curious about what it's like to live with end-stage cancer. I don't mind that curiosity.  Clearly, Lisa doesn't either.  I would have been curious too had I ever thought about it before my diagnosis. Honestly, who the hell is not curious about what it's like to be dying, or know your time on earth is short?   If you say you aren't, you are perhaps not completely honest with yourself.  The one thing we all have in common is that we are going to die and we don't know what it's like.    Lisa and I both understand that interest.

We also both want the world to know that breast cancer is not pink, clean, pretty and tied up in a ribbon.  It's not about races and runners and ponytails and survivorship.   It is ugly and real and people die.

Some people take photos, like Angelo Marino.  We write.

So, the wife of a former Executive Editor of the New York Times, Emma Keller, discovered Lisa's tweets. Not only discovered them, she became addicted to them, creating a special channel (whatever that is) just to see them.   And then, somehow she felt guilty about her addiction and started wondering if it was healthy to be curious about somebody else's life to that extent.  I suspect Emma has never really involved herself with anybody else's life, so this is all new to her.  And, in her guilt, she didn't blame herself for her curiosity, she blamed Lisa for being so damn interesting.   Naturally with her editorial contacts, she decided relieve her guilt and write for The Guardian -  about this brave woman who puts it all out there to help others, to educate people about metastatic breast cancer. What else can you write about a person you admit to being addicted to, even having contacted, but a glowing piece, right?

Here it is.

Well, maybe not so glowing.   If you notice, the Guardian has deleted the piece as it is not up to their '"editorial standards" whatever that means. (I think it means hundreds of people complained.) I found it in the Internet Archives.  In this piece, if you read between the lines, Emma is basically writing about herself and her thoughts about what Lisa is doing, the "compulsion" Lisa has to write. She also wonders about medical costs.  Mostly, she thinks it is morbid and creepy that Lisa is "Dying Out Loud" and she cannot see the beauty in it or the reason for it.  Because it makes her feel ugly, that means it IS ugly. Instead of deleting her special channel, dusting her hands off and getting back to Neiman's, she decides to cancer shame Lisa. (Cancer shaming: the idea by the healthy that you are Doing Cancer Wrong.)

Edit.  After I published this piece, I discovered that Emma had kept a blog herself, and wrote about her own experience with DCIS.  She was so traumatized that she needed anti-anxiety medication beginning the day of her biopsy.  She writes about a conversation she had with her doctor, “It’s just too much,” I tried to explain, through my tears. “But it’s not cancer,” she aid briskly.  Exactly.' ". 

Perhaps this little anecdote explains much - this woman was so upset about almost having cancer that she became obsessed with somebody who has the worst form - and in her fear, in her knowledge that she would not have handled it the way Lisa has, she lashes out, abusively. 

After the Guardian deleted it, her whipped husband went to bat for her in the New York Times and wrote this scattered article.  I couldn't figure what his point was, except he also was focused on money.  It seemed to be saying he was insulted that Lisa has chosen a different treatment course than his father-in-law did and how doctors find it nearly impossible to find research subjects in oncology which people should do but oh yeah, shame on Lisa for participating in a research trial. Color me confused.

According to the cancer shamers,  everybody who gets cancer is supposed to roll over and just die, whether it's a young woman with 3 children or a 85 year old who has lived their life.  But wouldn't that put a lot of oncologists/radiation oncologists/physicists/chemo nurses, etc out of work?  Wait, these are New York Liberals, let's back up......wouldn't that put people in 3rd world countries who strip the bark of Yew trees for our chemotherapy drugs back into dire poverty?  

If you want to advance the cause of cancer research and convince people to participate in a medical trial and then shame them in the New York Times for doing so - is that helping your cause of bringing work to the starving in Northwest Africa?

He clearly doesn't know much about breast cancer.  How long ago was it that I was near death in a hospital room, a mere second away from having my colon yanked to try to save my life?  A year?  Two?   I was one blood pressure number away from a surgery with an 80% failure rate.  I was dying of sepsis, in ICU.  It took months to recover.   Now I am stable, energetic with a good likelihood of seeing my son graduate high school.  Finishing my job in raising him was what I set out when I was diagnosed with mets, and I may get to do that  {knock wood}  Lisa also has that job she wants to finish.  Breast cancer is a roller coaster ride.  There are ups, there are downs.  That's the way it goes.  I don't know what Keller's father-in-law had, how old he was, or why he went on hospice care, but whatever choices he made are different than Lisa's choices and what's wrong with that?  When my 80 year old dad thought he might have cancer and told me, somewhere during my 7th chemo, that he didn't want to have chemo, I did not disagree.  That was his choice, and he'd lived his life.  I have not.

Lisa is an educator and an advocate.  She knows the way it goes.  She has never said she thought she'd live a long life - she knows she won't. Yet Keller says this, "I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance."  He clearly doesn't know her, has read little about her and is possibly going on his wife's opinion.  Lisa has always been about acceptance.  Lisa has never given any indication that she will not give up when the time comes.  But with breast cancer, you do this medicine - it works for a while then stops.  You do that medicine, same thing.  Eventually, they all stop working or you run out of medication - and you go on hospice care.  That is what she will do and it's what I will do.  We have accepted that.

So, she wants to live a little longer.  Shameful, especially when there are still treatments out there for her doctors are willing to try.  She has three kids, wouldn't a rational person want to get away?

I am living-proof that one can get back to stability - I have no reason to think that she can't as well.  Her doctors seem to think so.

Keller seems to take exception to all of that.  "It seemed to me, and still does, that there is something enviable about going gently."  Sure.  There is also something enviable about continuing treatment and trying to stay around a while longer when you have three little reasons to keep it up.

The final sentence by another is supposed to sum up what his points were.  "Equal praise is due to those who accept an inevitable fate with grace and courage."  The implication is that Lisa has not exhibited grace nor courage.

And yet, she has.  Both Lisa and I know the final outcome of this disease, and it is death.  We know cancer will kill us and we have never said it wouldn't.  If she said she believed in a magic wand, I missed it.  What we both want is a bit more time with our children.  I believe one can accept the inevitable with grace and courage, while still trying to prolong life.  The two are not mutually exclusive.

The hard part of cancer is not living with treatment and the physical realities that result.  The hard part is knowing that the treatment is only temporary and the time you are asking for may be only months.  And, if writing poetry, watching hummingbirds, smiling at your family in the face of that knowledge is not courage, than I don't know what courage is.

Here are other cancer bloggers and their take on this situation.  Please forgive me if you have a feed and see this updating often as I will be adding them as I find them. If you wrote one, let me know on my facebook feed, I will add it.

Another One with the Cancer
Accidental Amazon
Pink Ribbon Blues
Telling Knots


Don't forget to vote for me in Healthline's Best Blog Contest.  Only 8 more days to go!  And, enter to win your Erin Condren planner by liking her page and coming back to post under that post.

Thursday, January 9, 2014

Giveaway - Erin Condren Planner!

(THIS CONTEST IS CLOSED - I will announce the winner shortly, after I clean up the entries and run them through

People who read my facebook page know that I got some good news regarding my latest scan.  I will elaborate in another post, but essentially, all of my organs look normal and there don't appear to be any new metastases, and the ones I have currently are unchanged. There is some to-be-expected swelling in the area of treatment but essentially, I'm stable.

This, naturally, is incredibly good news.  2014 is THE year - it was the goal I set for myself when I found out I had mets.  You all know I wanted to see my son graduate high school, which he will do this May -  3 years after my metastatic diagnosis.  And, life continues to give us surprises.  This year my stepdaughter is having a baby so my first grandchild will be born in March.  I will have my 20th wedding anniversary in September. Of course, I want to be around for all of these special moments that mark our passage through life - and with this latest scan, it looks like that is a distinct possibility probability.

All of it.

I'm well aware I'm on the roller-coaster ride of my life, and when there is an up, there will be a down.  This is an incurable illness and it is inevitable that the ride will change course.  However, I have great hope that the down will not be for a while. Perjeta, Herceptin, and SBRT have been miraculous for me.  And, they are new and nobody knows how long they could work.  Maybe a decade, maybe 3 more months.  But whatever it is, there is another therapy when this one stops working, and so 2014 - I can imagine my life all through this year

So, how to celebrate?  A movie?  Hard to get my boys to Frozen.  A meal out?  Still struggling with appetite.  Champagne?  I don't drink. Hmmm.....

To celebrate my news, to let me know she believes I have time, a wonderful friend of mine named Koryn sent me a darling 16 month calendar, which I promptly put up.  Our family uses a calendar religiously - we all write what we have going on so that when we make plans we can take everybody's schedule into consideration.  I was tempted to keep hers just for myself but as January came around and we were putting things on sticky notes, I shared.

I love office supplies, I love writing things down to be organized.  Chemo has completely destroyed my short term memory so it HAS to go down on paper or it's gone.  I have some old planners from my work days that I enjoy looking through - it's fun to see what I did when.  It also helps when you scrapbook.  And, I suddenly realized what I needed in addition to the family calendar - a day planner.

What says "I've got stuff to do and am going to live to do it" more than a personal planner?

So, which one to get?  I wanted a nice one - if it falls apart than I'll start reading bad stuff into it, like I might have a bad scan or something (yeah, even the most practical person in the world can have superstitions), so it has to be strong.  It has to have a ring binder so I can lay it flat in my scrapbooking desk (which is clear glass and I can see what's underneath).  I wanted stickers and tabs.  I started looking at them on YouTube and saw the Filofax, and the Daytimer, but they seemed a bit clunky.  I don't want leather, or anything bulky.

Then I came across one by Erin Condren.  And, my breath was taken away.  They are insanely beautiful and something you can be proud to carry around or leave out in your house.  More importantly, these life planners are customized.  And, when I say customized, I mean it.
Check that out - not only are their covers laminated and strong, in this design you can choose your own words and phrases.  As a cancer patient living with end-stage disease, I might choose words like "Now, Moment, Live, Thrive, Love, Intention" to remind me to live in the day. Somebody who had cancer treatment, completed it, and whose goal it to move past it emotionally may choose words that remind them to do that:  "Health, Lifetime, Forward, Fearless, Survive, Courage" or whatever words remind you of what you want to achieve.  You can never forget having had cancer, but you don't have to live in fear of relapse, so you can choose whatever words bring you strength and resolve.

It works for anything: if you are trying to lose weight, get in shape, eat healthy, use those words, "Clean, Exercise, Walk, Sunlight, Strength, Energy, Slim."  If you are trying to quit smoking, "Fresh Air, Stop, Breathe, Unnecessary, Pure......" Those are just a few ideas but experts often suggest to write goals on sticky notes and put them where you can see them daily, such as on your bathroom mirror.   You visualize it, think about it, distill it, break it down into achievable bits.  Having a cover of a planner with words you see every single day that spur you to get what you want can only be helpful.  Or, you can just put things you love there, as the person who designed the one above did.  Family names, favorite places - anything.

But that is not the only cover.  You can get patriotic ones, you can get a gerbera daisy (like my logo), there are chevrons, and flowers and many lovely designs, there is even a pink ribbon if you swing that way. You can add your own photo, or a collage of photos, you can pick your own colorway. You can select your first name, your monogram, your initials, whatever you like.  For a bit more money, there is even a stunningly beautiful one with expensive gold letterpress that comes in four colors (this is turquoise):

But.....there's more.   There are the life planners, which is what I want, but there are wedding planners, and teacher planners and college planners.

The stickers I wanted are there, 240 of them, everything from birthdays to mani/pedi.   Even that is customizable - you can add on and select words to match regular events in your own life.  For example,  I will chose "chemo" "scan" "MUGA"  "prescription refill" etc.  (How exciting, eh?)

You can get photo stickers - lots of them.  Put your mom/best friend/husband/dogs face on a sticker and put it on their birth date or any important even involving them. 

There are also matching notepads you can add that attach to the back, and there is a plastic sleeve to keep items in.  Keep a notepad in your purse and scribble notes on it and you can transfer it at home if you like. Also you can add on a pen holder or band to hold your planner together.  And, of course, there are inspirational quotes inside.

The actual planner part is perfect for me.  There is a month at a glance and then you have the week by week, but instead of every hour, it's divided into morning, afternoon, and evening, which is much handier for me who is not tied to the exact time, and whose handwriting is too big, I can never fit it on those little lines.  There are plenty of places for notes and reminders and scribbles - it's 200 plus pages.  There is a zip bag in the back for your pen and washi tape, and pockets for receipts.  The planner is 7.25 x 9.25, which is a good size for purses and/or a desk.

A paper planner may seem strange to some, and even to those who know me, because I'm completely tied to my iPhone.  But our family relies on that shared, posted calendar - we have never used the shared phone calendars because my husband is very non-techny and my teen wants privacy.   So we keep a calendar in a central area of the house and use it. Other "old-fashioned" things I like include scrapbooking, writing things down, keeping track of goals and thoughts, and I adore office supplies, which I know is a strange thing to like, but as a former secretary, it is ingrained in me to believe that those sticky notes and special things will help you become organized.  I cannot think of a more beautiful way to do this than with this Erin Condren planner.

I know this post sounds like a commercial but you all know I only do this when I truly love a product. (And I have a couple more exciting things to tell you about this year).

 I know that all of my readers are going to love this as much as I do.  I know a lot of you have had cancer or know people who have had cancer.  I know that a lot of you are dealing with chemo-brain and struggling with the same things I am - how fleeting our thoughts have become, managing our many appointments, struggling with staying optimistic while trying to do as much as we can to live a normal life.  If you are new to cancer, trust me, you are gong to have more appointments than you ever thought possible, and if you have metastatic cancer, you still have appointment after appointment and you, of all people, deserve beautiful things as well as the belief in time.  You also need a place to keep notes to your family for when you are gone. (I have a book of my passwords but sometimes I think, "Oh, I need to tell them this...and it is gone by the time I see somebody, so writing it in a planner and letting them know that's where to look for things is a good idea).

Why not wrangle all this stuff with a gorgeous planner?   Why not customize it to match your life?

For those who have asked me what to get their friends who have been newly diagnosed - I think it would also be a great gift.  Trust me, they will use it, they have so much coming at them so quick....a personalized planner with messages of inspiration can only be helpful and loved.

Because I thought it was so lovely, and would be so helpful no matter our stage of cancer (or stage of life)  I contacted the folks at Erin Condren and asked if they would run a contest on my blog. I have only done that a couple times in the history of this blog, (the last time was with SugarWish,) and I was very thankful when the Erin Condren people said yes!

So, one of my lucky winners is going to get $50.00 gift card to buy anything on Erin Condren's site!  And, once you get one, I will get one for my planner!  You don't have to stick to a planner, she has other lovely things, such as candles, cremes, stationary, other personalized items.  But the planner is THE thing that I think says "You are going to live this year" and like a calender, is a good gift for a cancer patient.  It shows that you trust they have things to plan.

All you have to do is like Erin Condren on facebook.  Or, instagram, or twitter, or preferably all three.  But definitely facebook.

Here is a funny story:  After researching planners,  I saw their product.  I saw the possibilities for all of us cancer patients, and then contacted them, asking for the contest and telling them I thought I could bring them some new facebook likes.

I did that before I looked at their facebook page - and saw that they already had 76,634k fans.


To their credit, they didn't laugh at me, they took me seriously and offered the contest.  So, show them that we in the cancer community can bring them some likes.  Then come back here and post a comment about something you might personalize about this planner.  I will use to draw a winner next Thursday. Comments close on January 16th at 10:00 pm PST so that gives a full week to win this wonderful prize.

Some Housekeeping.......

One of the winners of the Medication Management System has never contacted me, so reader Melinda Payne, please contact me at butdoctorihatepink AT gmail DOT com with your address and I'll have one sent out to you.

Also, please don't forget to vote for me in Healthline's Best Blog's Contest.  There is a badge in the upper right corner of my blog, just leave this page open and click daily.  There are only 11 days left until the winner is announced.  Please vote daily, get your family and friends and neighbors and be that annoying person who bugs strangers to vote for other strangers.   The money will go to my son's college fund, which we will tap this year.  (He still has straight As, for all of his semesters of high school; I'm so proud!)  We just finished his college applications.....and....OMG.  That was a shock.  I had no idea that colleges charged that much just to apply.  I suspect we'll have more sticker shock coming and every bit helps. So please vote!