Dreams come true

There is more than one person's dreams represented in the above photo

When I was first diagnosed with breast cancer, I wanted to read blogs to find out how people actually managed the treatment and the experience of having cancer.  How bad was treatment, and how long until they got over it?  What was it like?  What would hurt, what wouldn't?  Medical information was easy to come by and is always so blandly written. (Cough cough)   I wanted to know how people really felt and what really happened.  

Later, when I was diagnosed with end stage cancer, the question changed - how long do I have?   An unanswerable question but one that everyone who has been diagnosed with terminal disease feels they must know.  Yes, I got my paperwork in order, wrote down my passwords for my family -  but would I see my son graduate? Would I see another birthday?  How long does it take to die from cancer in the liver?  It no longer seemed as important to know how to manage the disease as it was to find out how long I would be able to manage.   

The information was easy to find, or so I thought.  Only 18% of women lived 36 months after their liver mets diagnosis, and median survival is 14 months.   But I also knew that statistics apply to a large group, with many different health conditions, treatments, ages, and other variables that are not relevant to me. It's why my oncologist doesn't guess. Statistics are also old - it takes time to do the studies and time to publish them and by the time they have been linked to enough times to drive them up google's rankings, they are out-of-date.  Newer therapies (like Herceptin and Perjeta) are not counted among them.  

Those newly diagnosed are told not to look at statistics online for a very valid reason - they don't relate to an individual human being.

  

Rebellious, I still wanted to know.  

How long did I have?  {Stamp foot!}

Like my early need to find and read blogs that told of personal experiences, I now wanted to discover real people who died of cancer and how long it took them.  Morbid?  Maybe a little, but it's like telling an ethnic joke - it's okay if you are part of that ethnic group.

I found a very active forum of women who had been diagnosed with end-stage breast cancer.  I set the time on the forum three years in the past and searched those posts for "liver mets." I found and wrote down everybody who was active and who had liver mets, and I followed their stories.  Many had the same treatments I did (SBRT, Herceptin), some had other new therapies, some had a few mets like me, others had many more.  Many were doing fine at that snapshot in time, in treatment or remission.  A few were quite ill.  They were all somewhere along the continuum of cancer treatment. I then clicked on their username to see when their last post was.  Then, I set the time to the current day and looked for those women.

None were left.

None.

Now, of course, that didn't necessarily mean they'd died because they'd stopped posting on a forum.   Like me, many of them could have decided that a forum has no value for them and went on to live their lives forum-less.  But most of us active in social media have taught our family members to make "the" death announcement (mine will be here)  and so I looked for those "last posts." Nearly all the women I'd found had truly died.

It appeared to me, with that small sampling, that 3 years was a long-range goal, inline with what I'd read medically.  2 years was realistic.

Okay, that was settled.  I had two years, three at the outside.  I knew it could be more or less, but that was the average with real people.  But I also had a child who just turned 14, a sophomore in high school, a kid who still needed a mother.  That wasn't an acceptable timeline for me.  I wanted to finish raising him. None of this 2 year stuff -  I needed the full 3 years.  

One of Kubler-Ross's stages of death is bargaining.  Not being religious, I have nobody to bargain with, yet I did it nonetheless.  Only I called it goal-setting.  I was going to do everything possible to live to see my youngest son graduate from high school, three years one month after mets diagnosis and nearly six years after my cancer diagnosis.   I wanted to know what college he'd be attending and I wanted to make his bed in a dorm and do all those things parents have done for generations to settle their kids into college. I wanted to finish my job of raising him.  Even if I couldn't do everything physically that I used to do, I would still be there to offer motherly advice and cheer him on.  

And, I'd know the direction he was headed even if I didn't see the outcome.

It was a very long, unimaginably hard three years.  I had half my liver removed. I did microwave ablation. I did chemo after chemo (seven in all). I survived a terrible bout of c-diff sepsis.  I continue on 3 targeted infusions.   I did SBRT (popularly known as gamma knife).  I had about 50 scans. I followed the latest in treatments to enhance my chance of going the distance. I slept more than I was awake, I took pain meds and rarely left the house except for doctors appointments.  Even if I had to go to his graduation carrying oxygen or in a wheelchair, I was going to be there.

Yesterday, the final college acceptance came in.  May will be my 3rd year anniversary with a mets diagnosis and he graduates this June and enters college in September. Today, barring a catastrophe, I believe my dream has come true.

As the acceptances came in, I kept track of them on my chalkboard.  Above are the colleges my son has been admitted to.  Out of those fantastic opportunities, it seems very likely that his choice will be Caltech, although Harvey Mudd has sent an attractive financial package.  We have not received one from Caltech yet.

I'm so grateful that my wish has come true, that I was here to see where my son's college days will be spent. Knowing he was accepted to schools like Caltech,  Harvey Mudd and some amazing UCs pretty much means his future is assured.  He could mess it up, sure.  But I also know he won't.  

I am also pleased that he will be in California and I'll be able to have him come home for all holidays - it's a short plane ride home from Caltech (or Mudd), and if he surprises me and goes to Berkeley or Davis, just a drive.  Yes, I am planning ahead a little, something I haven't done in a long time.  I don't want to get too confident.  Like on the TV show Survivor, those who feel they are running the show are pretty quickly kicked off.   I am well aware that I'm not running the show.

I will not have to leave this earth worrying about either of my children - both are doing well.   I can't tell you what a good feeling that is.  Yes, there will be the ups and downs of life and I probably won't be there to soothe them or give advice, but I did my main job.  

But that is not all I have to be grateful for:

 

Grandma Ann

My stepdaughter got married during a time when I was quite ill from chemo.  Her wedding was lovely, in a forest, with a big bonfire afterwards.  Travel was hard for me then (even a drive) but no way could we miss it.   I was on some Taxane then, post-cdiff still.  About 83 pounds and mostly bald.  The weather had been predicted to be in the 100s so I had bought a sundress but it turned out to be a cool day in the 60s and so I was freezing, even with a wig.  We went shopping in a charming little town to get me some tights and something warmer for my feet as well as an extra sweater.  Still, even with those things and the coat I'd brought,  I wasn't able to function long in the cold and looking back on the photos, I really did look sick.  During the wedding though,  I was in a peaceful state, loving the friendship and family that surrounded my beautiful stepdaughter on this happy day.  I hated to leave that atmosphere that is not often created - where everybody comes together in harmony and love for the people involved.  Physically though, I was simply not up for it.  After the ceremony and some toasts, I had to go back to the room to warm up and sleep, leaving my husband there to enjoy the bonfire and camaraderie and share in the love expressed by his daughter and new husband.

Then came the announcement that she was pregnant, and so now I had another reason to hang on. It may be presumptuous of me to call myself grandmother as the child is not biologically mine, and I don't think they really think of me as a grandmother, but I do so anyway. The child won't care about blood,  and I already love the little boy fiercely, and who can object to more love for your child?  I didn't know I had another reason to live, but seeing the first progeny of this generation of our big, crazy family is wonderful.  Many people are brought together by this one, small, beautiful being.

I still don't know how long I have.  I'm doing very well, better than I have been for years but there is a pain in my liver that glows like a coal.  It may be surgical remains or may be cancer growing. I can't guess and I no longer understand cues from my body.

One of the things I discovered when I did my cancer stalking was how quickly people died.  They would be posting about their next treatment and hoping it would work, or even how great they felt, or some trip they were planning, or sometimes they''d post, frightened, that they had jumped from remission to having a liver covered with tumors and what should they do?  Then a month later, two, no matter what they'd said - a death announcement. One women died a week after her long-awaited Hawaiian vacation.   The three year mark could still be a reality.

As long as I live until September, I'll have completed my goal.  My son will have graduated, and I will get to make his bed in his dorm room. I will kiss him, wish him luck and hand him the keys to adulthood.

I did the job I was given to do on earth, and raised my children.  I have seen the next generation, whose future is bright because of  two loving, devoted parents and a slew of people who will fill his life with love.  

Of course, I'd like to see my oldest get married, have a baby, see my youngest graduate college. I'd love to see the grandbaby start to walk and talk and run and climb and develop a love for dinosaurs. And, maybe I will.  Maybe I'll continue to beat the odds and be that outlier.  But I've decided I won't do more bargaining or set more goals.  I just won the lottery, I can't expect to win twice.   I am just going to appreciate every brush of the wind on my cheek, every blooming flower, every visit with my grandbaby, every contact from my children, and just LIVE.

I'm not sure why I was so lucky when so many were not.  Many women whose children were younger than mine succumbed to cancer quickly, and I know that they felt as deeply as I did that they wanted to see their children grow up. My friend Sarah, gone now for over 2 years - her babies were just toddlers.  My friend Sandy, her son was 17, the same age as mine. There is definitely an element of survivor's guilt at play in my life.  This disease, it's a terrible crapshoot, a roll of the dice.  We with mets - we are all going to die but who gets the time they wanted and who does not?   With every scan is a new roll, and that next roll can scoop it all away. So far, the dice have been in my favor.  I'm very lucky.  I'm very grateful.

And, now, it looks like I'm the parent of a Techer.  :)  

Or a Mudder:  

Thoughts on Life and Health

Recently, a little hummingbird blew off course and smacked into my window.  I have a feeder out back, and I've enjoyed watching two little birds share it over the past year.  I've gotten to know them a bit, so I was quite upset to hear the bang and then see this little guy stunned and hunched on my windowsill, breathing heavily. After googling what to do, I got a dropper, filled it with hummingbird food and placed it on his beak. I also stroked him, trying to warm him.  After five minutes or so, suddenly, he flew upwards, hovering near me for a few seconds as if to say "Thanks," or more likely "Don't freaking touch me again!" and then flew into the tree I knew was his home.  He's been back at my feeder ever since.

I, too, have been smacked hard the past few years.  Cancer, surgeries, years of chemo, sepsis, gamma knife radiation, all left me stunned, splayed out, blinking.  But the hands of my friends and family warmed me and gave me the strength to recover a bit.  I'm now flying up, feeling less stunned, even finding feeders on my own.

I heard a wonderful analogy by an oncologist about metastatic breast cancer treatment.  It is like climbing a mountain with no peak, he said. You have to put one foot in front of the other.  The snow is deep, icy particles are blowing at you, you can't see what is ahead but you must keep trudging along, blinded, step after step, year after year, pain and discomfort your partner. You slog through the white cold, hoping to someday find a resting place and get a break. You suddenly emerge into the sunshine, into remission, into a beautiful meadow where you can rest and warm, recover and nourish yourself, but sooner or later, you will be called to start your climb again. And of course, at some point, your climb will be over and you will be left on the mountain, stilled, eventually covered in snow, like all mountaineers.  

Right now, after 4 1/2 years of trudging, I have found a meadow. I'm resting, with hummingbirds buzzing about, flowers blooming and the grass tickling my legs.  I confess, I want to stay here forever.

It is interesting and amazing that our minds go back to normal so quickly when we feel better.  While I still am administered Herceptin, Perjeta and Zometa, I have not been on an actual chemo drug since July, and I've been recovering ever since.  As much as I accepted my fate, my disease, and my end, that's how quickly I've accepted my returning health.  I never mention cancer anymore, when it used to be a daily topic (and one quite boring for my family, I know.)  The cancer card now seems unfair to play or use as an excuse, and I once again know many people worse off than me, which was not always the case.

Before, I got angry if anybody mentioned making plans with me. It showed, I thought, they didn't understand cancer.  I wasn't able to plan for tomorrow, much less 2 weeks down the road, and why didn't people recognize that? (Those who lived with me understood because they saw what I had to contend with, but those who didn't never quite "got" it.)  There is no way I could know if I would be out of bed the next day, much less in a week.  To the healthy, this doesn't make sense - how much could change in a day? But those of you with serious disease understand.  I was way too sick, I didn't get out of bed half the time, how would I know how I felt in two days time?  I promised nothing - there was no future. There was only today.

Now I am thinking about summer, maybe some minor travel, certainly visits to my as-yet-unborn grandchild, maybe a last vacation before my youngest starts college. I'm thinking about my 20 year wedding anniversary in September,  and the weddings of other family members. I'm thinking how weak I am after years of inactivity and how I need to get stronger to do what I want to do in the future and planning how to accomplish that.

Before, I both did and did not realize how sick I was.  I was in pain, sometimes I spent days asleep without even waking.  My head felt wrapped in cotton and my thinking was fuzzy.  Still, after years of treatment, it felt normal.   I wasn't unhappy - I enjoyed my family, my little cat, watching my hummingbirds, but my life was very diminished.  There was only that minute and nothing else.  Now, I have a freelance writing job because I can keep a deadline again.  I scrapbook and organize my scrapbook room (a never-ending job) and buy product for pages I have planned and don't worry about spending money on something I may not use. I signed up for a 3 month class.  I am feeling well enough to volunteer a little:   I recently helped at Science Olympaid, as I did in that post from 2010.  My son is no longer involved but still, I enjoy doing it and this year I promised I'd be there.

The future is no less illusory than it was before.  I see the doctor on the 12th.  Ominously,  I have some twinges in the liver again, like I did when cancer was growing.   I could have a scan the 14th and hear the 19th that cancer has spread through my liver or is in my lungs or brain.  I could be in treatment again before the month is out, and be gone in 3 months.  That is the way cancer works.   That's what it did to my friend Sandy, who was feeling fine and planning a Canada vacation when she suddenly discovered it in her brain and died a few months later.  That's what it did to many before her.

Or, I could be one of the rare lucky ones, those with metastatic breast cancer who get two years in remission, or four, or even a decade. Why not me? It feels now like it's possible, although the odds remain the same.  It is amazing what being off chemo and feeling good can do to your outlook.

It won't last forever, and I am very aware of that. It may not last a month. But for now...it's wonderful, and I confess, I'm used to the idea of a future again and it will be a huge blow the day I hear that it is pulled out from under me again.  We humans, we fill with hope so easily.

It is simple to imagine I will be given everything I wanted nearly 3 years ago when diagnosed with mets.  I wanted to live to see my son graduate high school, which happens in June.  I wanted to see a grandchild, and my stepdaughter is keeping us waiting as the baby was due a few days ago. I wanted to see my oldest son get a job with a good company that can offer a future, which has happened.   I wanted to know where my youngest son would go to college, which we will discover by April 1st.  Yesterday, the phone rang with his first acceptance - to UC San Diego as a Regent's scholar.  13 more schools to hear from before the decision is made, but now, we know for sure he's going somewhere good.

It's all I could have asked for and it is all coming true.

When I see those things happen, (yes, I said when) I may set more goals.   I have an older son who will hopefully be getting married, and I'd like to see that.  I want my younger son to discover his career in college and come home to tell tales of fun and learning. Maybe take a trip for our anniversary.   I am greedy.  I want more life.

I was prepared to not have it, and now I am prepared to continue on.

Of course, you never know,  I could still get hit by a bus.

Until then, I have to say, this meadow is gorgeous and the mountains I have yet to climb seem very far off. I hope I get to sit here and rest for a good, long while.

Who's a writer?

Yesterday was my son's 17th birthday.  There have been many, many times over the past four years that I didn't think I'd live to see this birthday, and times when I was right, when I was close to death - yet here I am, and not only that, feeling fantastic.  We were able to give my son a wonderful afternoon and then go out to dinner and surprise him with a nice present.  The best gift was my sister, who lives 600 miles away, came to visit and was able to go to dinner with us.  It was a very nice day.

Of course, no matter how busy you are, if you are me, you check your email/facebook/twitter.  And, mine contained something special, something just for me.

Healthline, apparently sick of me winning their best blog contest and taking their money for free, had asked me to write a (paid) test article for them - if I managed to write it effectively, they would hire me.  The subject was about Triple Negative Breast Cancer and the Five Year Recurrence Rate.  They have slideshows on their site and I was writing one of those, so I had to break up the topic into pieces with certain requirements about readability and citations.  Despite my busy week, with several doctors appointments and a birthday, I managed to turn it in on time.  I was quite nervous about it but I needn't have been:  when I checked my email on my son's birthday I got a glowing review.  In fact, they said they often have to send some back for corrections but not mine.  "You nailed it" was the comment.

You can imagine that made me feel good.  So now, I will be a regular contributing writer to Healthline.  I don't know how "regular" it will be or how much work they will have for me but even a little bit will help me son with school - buy him coffee, a textbook, some pencils - or perhaps I'll even buy some scrapbook stuff for myself.  I now need Heritage papers to redo my mother's photo albums; my sister brought them over and they are in those awful magnetic ones that ruin photos.  She had a lot of family history in them, surprisiingly, so they need to be treated with respect.

So here I am.  Six months ago getting out of bed was a chore and a matter of will.  Today I have an employer.  Breast cancer is a funny disease - you never know how things will turn around.   Will it last forever?  No.  But for now, it's good.

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.

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!  :)  

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.

http://www.healthline.com/health/best-health-blogs-contest

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 www.facebook.com/butdoctorihatepink  

(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!)

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 .....no.  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.

ARTIST STATEMENT

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.