Saturday, August 17, 2013

Four More Years!?!

Four years ago today, I was diagnosed with breast cancer. 1,461 days ago, a doctor walked in, sat down next to me and with sad puppy dog eyes, gave me terrible news.  I was not scared.  I was not worried about what was to come.   I accepted what he said and immediately moved forward:  "Okay, what is my treatment and when will I be done?"

I was absolutely sure I would be done.

If this was a Star Trek episode or an old Twilight Zone - if you could take my old brain out, the brain that inhabited my body four years ago, and pop it into the body I occupy now, it would run screaming, as far away as it could go.   Emergency systems would activate and it would vacate immediately, red lights blinking, sirens blaring, veins pulsing.  "What?" it would yell, "What the hell is this?  What is happening?  Why does every bone hurt, what is this pain across my midsection, why can't I lift my arms, why do I feel nauseated, why are there so many scars and missing body parts?  What the HELL happened?  The hair - it's grey!? The body, it wears pajamas in the daytime? My fingernails are ridged, crumbling and dark, wtf?"

And, because my brain tries to look for the positive, "Well, at least I'm fashionably thin, heroin chic, in fact. Is that still in style?"

That Ann could not have imagined living the way this Ann does - with the pain, lack of energy, weakness, constant exhaustion and the need for help that makes up day-to-day life.  That Ann, the healthy, active, bossy, working, fashionable, in-charge person of four years ago had no idea what she was about to endure: numerous surgeries both large and small, life threatening infections, year after year of chemo, dying bone marrow, test after test after test, radiation and dyes and contrasts, hopes raised and hopes dashed. Ann of four years ago would have been stunned into horror if she was suddenly transported into Ann of today, shocked as if she had taken a polar plunge into the icy shore of Alaskan waters, in winter.

Early on, when that brown-eyed doctor gave me the news, I was unable to imagine this future.  A doctor's words didn't clue me in, but neither did reading about other people's experiences in blogs or forums or articles. It turns out, one can't imagine this, what it's like to be in treatment for four years, to live with the knowledge of what your end will be, to have your future taken away.  It has to be lived. My brain had to be here.

And, I suppose, if I live another four years - an extreme long-shot to be sure but others have done it - the same shock will happen as I think back to today.  I can't imagine what it would be like to be in treatment for 8 years, even after having done so for four.  I can't imagine the wreckage another four years will bring, both to my mental state and my body. It can get worse?

Do I even want to know?

No.  It is hard to imagine four more years of a life like this. But it is far harder to imagine not living it.

There are times I wish we lived in a Twilight Zone episode.  Would it not be fantastic to be able to drop our brains into somebody else's body for a time, just to walk in their footsteps?  I think I'd pick Jennifer Aniston, or maybe Melinda Gates.  I have no idea what it would be like to be a world-recognized beauty, or a wealthy philanthropist, both women who can have anything they want without thinking twice.  It sounds glamorous but I know they have problems too and it would be interesting to experience them.  It would also be nice to feel healthy again.  Of course, if people could choose where to drop their brains, I suspect those people would be chosen all the time.  There would be fights by brains all lining up waiting for a chance to get in Jennifer's skull.  And, brain fights are ugly, trust me.

Me and the homeless guy on the street corner?  We would not be fought over, I'm sure.  So to make it more interesting,  let's say we could do it to others - push a button on somebody, their brains pop out and you could drop them wherever you want.  I think this is a perk only those of us with metastatic cancer or other life-ending disease should get, don't you think?  We all know those people who tend to overly complain about piddly stuff while we are planning our own funerals.  We could drop that woman who constantly whines about her wrinkles or her extra five pounds into our bodies so she could know what we experience.   It would be wonderful to stop them in their tracks and have their brains scramble back to their own heads, realizing, "Oh yeah, life really is pretty good, I didn't really have a problem."

Personally, I might start with Oprah, complaining about not being shown a $38,000 purse in favor of a $30,000 purse, or complaining that Hermes wouldn't open their shop for her after hours, both incidents she deemed worthy of international attention.  Oprah has forgotten what a real problem is, and worse, she's forgotten the mission that made her famous - the one of reminding women to be grateful.

Being grateful is important.  Oprah, after all, can afford a $38,000 purse, and I'm sure she has plenty in her closet - a closet that is certainly bigger than my house.  She has trusted friends and loved ones, she has a body that functions and that allows her to travel to Switzerland, and likely has a long life ahead of her that will be full of joys. And yet, she looks at what most would consider a marvelous life through a lens that keeps her from enjoying these immense gifts fully. Too many people focus on minor problems and  imagine situations that may not be true, and a jolt of reality is what they need. What's more real than living with incurable cancer and in constant treatment?

So, Oprah, bzzzzz!  The button is pushed and your brain is about to enter my body so you can get an idea of what hardship is really like.

You know what else would be fun?  Cross-species brain exchange.  Wouldn't it be interesting to get a brain's eye view of what your dog is thinking as it lays on the hard floor under your feet as you are typing away?  Wouldn't it be satisfying to finally understand - really understand - why the washing machine is so damn frightening but the dryer isn't?   Nothing says relaxation like a cat in a sunbeam - wouldn't it be pleasant to experience that?  I think those of us with terminal illnesses could learn a little bit about acceptance and living day-to-day from our pets.

The truth that my Brain of Four Years Ago (B4YA) would discover is that I'm now a person limited by my physical capabilities and dependent on others, something that formerly independent brain would have a hard time believing. These limits cause changes in thinking, as do four years of drugs infused and ingested, as well as the stress of knowing that I will miss all I had planned in life: work, retiring with my husband, travel, seeing weddings, graduations, grandchildren. Mourning these things takes a toll and no, none of us who have metastatic cancer are ever the same.  Our pre-diagnosis brains may not even recognize us without the ability to think beyond three months. So much of human thought process is taken up with what will be, what we'll do, that when that is taken away, we are inevitably different.  With metastatic cancer, our lives are lived in 3 month increments.

Try it:  For the next week, be conscious of what you think and say, and every time you mention or think of something that will happen more than 3 months from now, realize you can't plan for it.  Anything beyond three months is out.

Your former brain might also be surprised that you want things to be easy now.  Easy may not have been on your radar before, but now it's important.  Your life is ending and it exists as it is: people must evaluate you on the entirety of what they know and nothing can be changed. There is no more time to fix or modify anything.  It's natural to end up wanting to gather round the people whose love is simple and made up of acceptance.  This means there may be different people in your life than you might have thought there would be before diagnosis.  Some people naturally know how to make things easy on you, and understand that things should be easy on you at this point - that it isn't a selfish desire, or at least, an unrighteous desire: when should things be easy on us if not for when we are dying?   These people you seek out now are those who are able to allow you to relax, and don't ask for much back. They will send a card or gift and not be upset if you don't get a thank you back to them quickly, or at all.  They will give you the benefit of the doubt, they will be kind and naturally understand your suffering; that you are changed by drugs, therapies, grief and have less ability to give.

Some people, unintentionally, still need too much from you, like you were the B4YA.  It becomes too exhausting to deal with other people's emotions, whether it be to comfort them, break through their denial, explain misunderstandings, or manage their personal problems as you would have in the past.

You just can't do it anymore  - you are mourning.  Your life has died.  Many don't understand that, and it becomes too hard to explain.  It's not that you feel their needs are unimportant, it's just that you have too many of your own, so you must let them go.  Your brain needs ease and you need acceptance.

After four years of cancer, knowing the end is closer than the beginning - what is important?  A hummingbird drinking from a flower.  The brilliant smiles of your sons.  A baby's excited movements.  A dog so happy to see you that their tail is helicoptering. A cat that cuddles next to your stomach.  A meal and card left on the porch.  A hot bubble bath.  A life partner who gently rubs your arm. Someone who texts you a joke.  A friend who drives thousands of miles to visit, only to peacefully color with you.  These small things are full of comfort and warmth.

If you took my brain out of my head four years ago and dropped it into my skull now, yes, I would be physically shocked at the changes - as if I had been plunged into that Alaskan water.  But after a few gasps, I would notice that my loved ones are there, gently wrapping me in a warm towel and giving me hot, soothing tea.

And, at the end of life, that's all we need, and that is enough.  

Sunday, August 4, 2013

SBRT Complete

I've finished my course of SBRT, having 45 gys in 5 fractions of 9 gys each.

That makes sense to somebody, I'm sure.

The Space Bag has been unplugged, the air allowed back in and is ready for use by another patient.  I was given a certificate of completion and told I was a model patient, which only means that I am really, really good at lying down, not that I look beautiful.

I do have a certain glow about me now though.

What do non-model patients do, anyway?  How hard can it actually be for a cancer patient to lie in one position for 15 minutes? Isn't that kind of what most of us do all day anyway?  Do these non-modelers scratch themselves in the middle of a radiation beam, or keep forgetting where they are and try to sit up? Do they scream at the techs, spit at the machine as it revolves around them, or complain about the music playing?

Speaking of music, I had a special playlist just for this therapy, given to me by my friend Sue S, and big thanks to her.  I listened to it on the way over to mentally prepare, and I highly recommend it to those of you who will be doing your own version of radiation.  Be warned:  some of the songs are so "danceable" that if you listen to them during therapy, you won't be a model patient, like me.  You'll be twitching and toe-tapping and soon enough, break through your restraints to dance with the dosimetrist.  (Especially on #13, my fav)   I'd suggest that during actual rads, you listen to something boring, like vintage Elton John, so you can lie quietly and maybe even sleep.

Thank you Sue:

1. Radioactive (The Firm)

2. Gamma Ray (Beck)

3. Radiation (Gavin DeGraw)

4. We all Radiate (Average Superstar)

5. Love is a Radiation (The Black Seeds)

6. The Ballad of Marie Curie (Army of Lovers)

7. We Radiate (Goldfrapp)

8. Radioactivity (Kraftwerk)

9. Radiate (Puddle of Mud)

10. Electron Blue (REM)

11. Drunk on Radiation (Lady Sovereign)

12. Radiation Vibe (Fountains of Wayne)

13. Electron Romance (Strontium 90)

14. Radioactive (Kings of Leon)

It's pretty amazing, when you think about it, knowing that stuff of stars has passed through my body and has hopefully snapped the DNA of my tumor into pieces, never to recover.  And, how complicated it was - there was a Physicist there, a Dosimetrist, the Radiation Oncologist, Radiation Therapists, several technicians,  all watching me on camera and computer as I was radiated, dosage carefully planned in accordance with bodily motion.   I wish my younger son could have been there as he is going to be a scientist and is making noises about going into medicine as a surgeon.  I think being a radiation oncologist or radiation physicist would be right up his higher math alley and tap into his skill set.

Speaking of college bills, I hate to think how much this treatment cost.  And, I wonder why my insurance keeps approving new, expensive and uncommon therapies for an ex-school secretary who doesn't add much value to society.  (Shhhhhh.....)  I'm not complaining, and thank you insurance, when we chose you, we certainly chose right.

Now what?

In a week, I  have blood tests to check liver function.  In six weeks, I will have a CT scan to see if there is improvement.  It takes up to six months to get final results, and this treatment will confuse a PET machine for a time so there will be some limbo until everything settles down.

Kind of like what happened with the resection, only this time I know it.

Of course, I'm now living life without a binky or security blanket.  I'm off chemo as my body can't tolerate it anymore,  and won't know if this has worked for a while.  While I have every confidence that SBRT will be successful for this area of cancer, I can't ignore the fact that cancer could continue to grow, either in my liver or elsewhere  - now unchecked by chemo.  That is what metastatic breast cancer does.

How dependent we Stage IV BC metsters become on chemo!  It's a hate/love/hate relationship, but we all know that when we can't have chemo anymore, it's often time to say good-bye.

I am just going to live under the assumption that this treatment killed that tumor, no new cancer will form for a while, perjeta will help, and it bought me enough time to make it to my son's high school graduation (this school year), which has been my goal since I found out I had mets.  Hey, maybe I'll be greedy and start to hope for time beyond that too.

Depending on the study, it looks like median overall survival after SBRT ranges from 13-20 months, and has a local control range in the 90th percentile.  Since there are no signs of tumor growth anywhere else at my last PET, I am going to mentally put myself in the "median is not the message"  group and assume I'm on the upper end of that line drawn down the middle.   In my mind, that the tumor is dead, and when more come back, it won't be for at least 20 months, maybe longer.  Of course, I have to temper that hope with reality, as the resection failure was swift, and seriously disappointing for me; I don't want to go through that again.  I have an incurable disease, I can't go into denial about that.

Side effects have been minimal.  I've been tired, of course, and spend the day in my pajamas with a blanket around my shoulders, which is not unusual as I do that almost every day.  Right now,  I don't have any flickers of energy like I had been starting to get before this treatment, but I hope and suspect it will come back.  The paperwork they gave me says that the fatigue can last up to three months.   I've had some nausea which has been controllable with medication.  I have some pain in my stomach and mid-section, which is not new but which is slightly worse.   My biggest problem is food intake.  I've no desire to eat; my stomach hurts worse when food is in it, the thought of eating is unpleasant and nauseating, and I am still losing weight. This has been ongoing since before radiation so I can't blame it on SBRT, and I do hope that it is arrested as I begin to heal.  I lost some weight caring for my Dad before his death which was understandable as I moved much more than normal and had no time to eat,  but then lost some more after I got home which is inexplicable.   I imagine my doctor will put me on a drug for weight gain if I get down into the 80s (which is just a pound or two away) but I would prefer to just gain on my own.  It is hard when nothing sounds good. My husband will ask me "Do you want something to eat" but the answer is no, and it is too difficult trying to figure out what I can tolerate.

No, I don't drink Boost or Ensure, that stuff is disgusting.  If I had a Blizzard from Dairy Queen, I might eat one of them though.  Hint hint for whenever my husband reads this.  :)

I do force myself to eat a yogurt and a piece of fruit every day and some of whatever my husband cooks for dinner. (Yes, he has to do the cooking these days and has had to for a while.)

Finally, my last symptom:  I have started to get headaches, which isn't a listed side effect but I've always been prone to them.  They also started before SBRT but seem to have gotten worse since.  I'm hoping it was just the stress on my back and neck of the position I had to lie in during therapy; or perhaps a side effect of not eating or maybe just stress about my Dad.  I hope they go away.  Dealing with all of this over the years has been hard enough, adding headaches on top of it is just wrong.

Oddly enough, even my powerful drugs don't get rid of them; only Imitrex does.  I assume that means they are still migraines, although they don't hurt as much as my migraines of old did.

My best friend of 25 years came up to visit me.  It always warms my heart when somebody wants to see me when I'm not sick, it feels to me like they are not obligated then.  Unfortunately, I wasn't well enough to do anything with her so we just colored with my new alcohol markers.  (No wonder people don't visit!) She went with me to an SBRT appointment and naturally, charmed her way into the room to take a couple of photos.  They wouldn't let her take them of me strapped in because they have to pull up the gown to expose my breasticle area, so you miss the torture clamp.  But you can get an idea of what the place looks like.

The blue is the bag of beads that is shaped like my body-doesn't it look like me?.

I fit perfectly, and happily.  Behind me is the radiation machine that moves forward and whirls around me.  Look close and you can see a green laser on my face.

Why not smile?  I am, after all, a model.  Patient, I mean. See the grab bars behind my head my hands are on?  My frozen shoulder is getting better to be able to do that.  Just took 3 years.....

So, I'm only left with every three week herceptin and perjeta, and monthly zometa and doctors appointment as my treatment, sprinkled, of course, with scans, MUGAs and blood tests.

What will I do with all that free time?

Thursday, August 1, 2013

John K. Silberman - RIP

December 25, 1930 - July 31, 2013

I wrote about my Dad's illness recently.  Turns out I was wrong on two counts: my brother did eventually act like a man and go up to help, and none of it mattered.

My father passed away July 31st, 2013.

Ultimately, I think it is for the best.  He hadn't gotten over the death of my mother and never seemed perfectly happy without her.  I wish I could say that I believed they are now together forever, but I don't swing that way.  He did believe in the supernatural though; he felt my mother was haunting him and doing crossword puzzles in her chair.  I hope in his final moments his imagination had her wearing a swishy dress and dancing right into his arms.

As for me and my heathen ways, all I could think to do was suggest they get matching urns.  They will both be interred in a military cemetery in Sacramento where they raised their children and spent most of their lives.

My dad was a complicated person, as we all are.  I will remember his charm the most; how he never met a waitress he didn't flirt with and never had a server he didn't tip big.  He also would never let you pay a check and if you tried, there would be a physical tug of war over the bill.  Which, indeed, he always won.  On his 50th birthday, I took him to an expensive restaurant and had to make arrangements in advance for the server to give me the check.  I had to tell them that he would fight for it so to make sure it was handed to me, not just put on the table.  It was one of the only times I ever managed to pay.

He was deeply flawed, as I mentioned before, but people are never just one thing.  Drinking sometimes made him angry - but mostly at me.  People familiar with the alcoholic environment will know there is always one person who is labeled the problem to take the pressure off the drinker;  in our family that was me. Yet, with others (and mostly with me too) he displayed only his wonderful qualities and he had the ability to make lifelong friends.  He was incredibly social, and I often felt like a wallflower in his imposing presence.  I was more like my mother; quiet with one or two good friends.   He was too large for that, everybody he met became his buddy.

I have often wondered if he and my mother had lived sober lives, where they would have gone and what they would have done.  With my dad's charm, and my mother's innate intelligence, they could have done anything: become diplomats, leaders - the world was theirs.   As it was, even living as alcoholics, glued to that bottle, they did what everybody else would want to do - they had good jobs, nice houses,  they traveled the world, they danced, they enjoyed their time together.  They even raised three children - scarred but resilient.

Dad was a hard worker and a company president who worked in the IT staffing industry.  He achieved great success in his career during the time of the 3 martini lunch, and was well-known by everybody in his field in several states.  It was a career he was never really ready to end.  In retirement, he became a writer, one with talent although with no patience for editing. He wrote and was done, no looking back and fixing plot lines, enhancing a story, seeing where it went wrong, not for him.  He said what he wanted to say and now let's move on.  He did that in life too.  Introspection was not his strong suit - life is to be lived, not thought about.   In later years, he self-published several books but wasn't aware it was self-publishing - and nobody had the heart to tell him - he was so proud of his accomplishment.  I have no doubt that with a bit more editing and practice his books would have been accepted into traditional publishing houses.  He definitely had a unique voice.

In the normal sense, he was not exactly a loving father and grandfather - he wouldn't bounce grandchildren on his knees and he wouldn't sit and play a game and even with kids around, his scotch glass was full.  He never came to see me during any of my cancer trials, hospitalizations or surgeries, but flip that coin and if anybody ever needed some cash, he'd have been the one to ask. He was incapable of saying no; he was the epitome of the guy who would take his shirt off and give it to you.

Especially if you were a young woman.

Once my mother died, Dad mourned and never really stopped.  But he missed the company of women and not women his age.  Somehow, despite not being wealthy, he managed to attract young women.  They buzzed around him like flies to honey.  He knew it was silly but said that one Christmas after mom was gone, he was sitting there completely alone, and decided that was enough.  He liked the company of women, was not attracted to elderly women,  and was going to find some.  And, that he did; his dates were younger than me.  Some were clearly out for themselves but I think a few were kind-hearted and truly did like him.  When he was in the hospital, one of the nurses was so taken with him that she spent 2 hours with him, encouraging him to get better and move in with one of his daughters.

My dad.  Complicated, alcoholic, loving, impulsive, bad-tempered/great-tempered, charming.  

He was loved, and he did love.  He told me, in the hospital, that he had a good life, with great successes and great failures. It's true.

I am glad his decline was swift although am not happy it was complete.  I enjoyed very much dumping his half gallons of scotch down the sink,  and was hoping to get his point of view as a sober man.  But I know some things wouldn't have changed, (maybe most things)  like his sense of humor, which I inherited.  Neither of us is politically correct, and are not afraid of a little gallows humor.  As he got older, and I further along down the road of cancer, we used to joke that we were racing each other to the grave.

Well Dad.  You won.

I love you.