Monday, March 31, 2014

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time to publish them and by the time they have been linked to enough times to drive them up google's rankings, they are out-of-date.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.


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:  

Tuesday, March 11, 2014

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'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.