The Trap

Wednesday, I saw my oncologist to get my most recent scan results - the scan that I hoped would show how well SBRT has worked for me.  What I wanted to know - what we all want to know - is this: "Did those magical gamma rays kill the cancer?"

I fell into the cancer trap, even knowing it was there, teeth bared and waiting to snap:  I assumed I'd learn my future, that it would be there on that paper. For a while, I forgot that none of us can know that,  whether we are diseased or not.  These scans make us think the impossible is possible.

I sat in the exam room until my doctor came in.  He looked at my blood tests and said they looked fine and then opened the file that had my scan results.  He read the impression section to me.  "There is decreased enhancement in the region of the porta hepatis, within the fiducial markers, likely from radiation change.  A cleft of decreased density is likely related as well  ....  There are no focal enhancing lesions to suggest residual or recurrent tumor."

I smiled, because that sounded like pretty good news.  I told him I was going to put it on my fridge with a big fat gold star.  I instantly imagined that with that single line, I will get my dream of seeing my son graduate from high school, which is 8 months away.  "No lesions to suggest residual or recurrent tumor."

Reprieve.  I'm going to live.

Now, I know metastatic breast cancer is like playing the game of whack-a-mole. Odds are it'll rear its ugly head again and soon; I'm certainly not cured.  Only 15% of women with metastatic breast cancer are alive five years past the diagnosis and I'm barely into year three.   But with those results, for now, and maybe a while, I felt that I'd reset my doomsday clock.

My oncologist continued, "we'll will keep up with the zometa, herceptin, and perjeta and I'll see you in two months."

"Two months!" I exulted.  I have not gone two months without seeing a doctor in years; that right there tasted like victory, confirmation that I'm on the path to success.

Sternly, my oncologist told me that next time he sees me I must weigh 95 - a five pound gain. I nodded meekly but my mind spun that comment, too,  into healthy gold.   "There is no reason not to gain weight" my thoughts whirled.  "Surely, in two months, my appetite will come back, the pain will be gone, and I can eat without discomfort."  I went further into the World of Health.  "Maybe all pain will be gone, maybe it's just scar tissue that will heal.  Hey, if my body isn't all caught up fighting cancer, many things can happen:  my weight will improve, my energy will heighten, my need for pain meds decrease and my life become more normal. Maybe I can go on a vacation, maybe I can start a business, maybe I can write a book, maybe I can finish my scrapbooks, maybe I can get the house clean. Certainly, I can get up to 95 pounds.  Heck, maybe I can go for 100, 105 even."

"Maybe," I thought, "I can be normal."

Some serious dreaming right there.  The trap had me but good.  I imagined my future all the way home.  Not like you would imagine the future, because I know I still am destined to die of cancer.  But, I started believing in time again, planning for things days and weeks ahead, simple things like buying new boots for winter, some baby clothes, maybe some clothes or a new coat for me, going on walks to improve my stamina, volunteering at my old school,  planning a vacation, stuff I hadn't thought of in ages.  I even got annoyed at how uncomfortable my implants are, something I'd accepted without question until that moment.  "I have to live with this forever?"

Yesterday, I had an appointment with the radiation oncologist who directed this portion of my care, also to go over the report. As I was escorted back to the exam room and the doctor entered, I smiled big.  I knew he was going to give me great news; after all, I'd had the report.   He was going to tell me, for sure, that he himself had conquered my cancer.

And, as he pulled up my films, he said something surprising, "I'm not that excited about it."  He pointed out before and after pictures.  He didn't see that much difference between the scan I had pre-SBRT and this one.   The changes,  he said, were minimal.

Okay, don't get upset.  I'd forgotten that we had started from a pretty good place - my pre-planning PET scan had shown that the Perjeta had been very effective on the cancer, and the SBRT was going to be done on something already becoming inactive.  So these results reflect that reality.  But they don't show a huge cancer mass murder, like I'd hoped.  I didn't hear "You don't have cancer, you are NED" like I had wished. But no new cancer has grown either, so that's important.  His news was no different than the news I'd gotten from my other doctor.    I'm stable.

I remembered at that moment that it didn't matter; I don't want to live from scan to scan when it's all an illusion anyway.  A week from now, I could be diagnosed with brain mets.  Two years from now, I could be as healthy as I imagined early on.

There is no way to tell from one scan.  The trap let me go.

The doctor asked hopefully if I was continuing with chemo, a slightly deflating statement.  I explained that I was not able to because my white counts still have not recovered, but told him I was still on herceptin/perjeta/zometa, a combination that seemed to be working for me and he was happy to hear I would continue it.

We agreed to do another scan in 3 or 4 months, whether it's ordered by my oncologist or him, and he agreed to see me again to go over the results.  I do like to get both of their perspectives.

Doctors are always a bit more cautious than patients, as they should be - we have one experience to draw from and they have thousands.  It's good to have that discerning eye, or two, to remind you that you still have a critical disease and not to allow your mind to go places that will only become very disappointing, like vacations to Tahiti and Disney and visits with great-grandchildren, which still are not going to happen, no matter how great that one scan is.

It is not easy to stay out of that trap - the trap that is your imaginary future.  And, you have to remember, like my RO said, "If you feel good now, that's all that matters."  

There are not a lot of people who get out of metastatic breast cancer alive.   But there are none who get out of life alive either.  So the question becomes one of time, and one of trying with imperfect methods to peer into the fuzzy, foggy future and see if you are standing there, and we use the illusion of PETs and CTs to try and cut through the muck.  I think the truth is, we just can't know with crystal-clear perfection what is going to happen to us, no matter how many machines peer into us, or how much contrast solution we are injected with.

What we have is the here and now.  We have our families, what's in front of us, and if we feel good, we are good.  It's as simple as that.

The previous years have not been easy ones - the game of whack-a-mole is a hard one to play, because what we are whacking is our own selves.   The trap I fell into was thinking that somehow, this scan would be different - this would be the one that allowed me the luxury of breathing room, that would give me some normalcy.

And, that will never happen again.   I'll keep playing the game, trying to beat disease back, having constant medical appointments while trying to avoid the trap of the future and instead,  just accept and enjoy the here and now.   Those are the cards I was dealt, so that's what I'll do.

When Good Boobs Turn Bad - Book Review

People are always nagging me encouraging me to turn this blog into a book.   And, you know, if a publisher offered me a fat advance I wouldn't say no, but guess what?

It's too late. The book I would have written has just been published, and it is called,When Good Boobs Turn Bad: A Mammoir by the hilarious Jill Foer Hirsch.

After promising to review her book, I opened it intending to read just the first page.  I wanted to see her writing style, and then I was going to go to sleep.  To be perfectly honest, I've read a lot of bad books and articles about breast cancer, and I was half expecting another snooze-fest.  I'm happy to say I was completely, utterly wrong.   Despite my advanced stage worries, I couldn't put her book down, and Jill, you cost me a night's sleep.  And, considering I take 2 mg of Ativan every night, that's no small feat.

I'm not kidding when I say her book is the best memoir about early stage cancer I've ever read, and also not kidding when I say I'm super jealous that I didn't write it.

She's wry, descriptive, humorous and helpful, all at the same time.  Her stories about dealing with cancer are LOL funny, and she sprinkles anecdotes with  tips on how best to manage breast cancer treatment.  She's both engaging and informative and writes in an accessible, down-to-earth style.  She's included photos of herself at the various stages of treatment, making it seem like it was written by your best friend.  One with unmanageable hair, just like mine yours.

At first, I read with suspicion.  I mean, this chick is hilarious -  and I thought I had the market cornered on cancer humor.  Did she steal from me?   She has my attitude about dealing with breast cancer down pat - that's to plow your way through it with a minimum of tears and a maximum of giggles.  She was determined to find the amusing parts of the experience (and there are many) and focus on those rather than fears and pain.  Naturally, I scoured her book to see if she had stolen any of my jokes or if she had copied my blog because really, can there be two women who laugh about cancer?  Well, apparently there can be.  She's pure original.

She begins with her diagnosis, Stage IIB cancer, and goes on to discuss her treatment, from testing to surgery and on to chemo.  She shares the options available to her and why she made the choices she made. She also regales you with her fashion challenges and the awesome food she got to eat. (That reminds me - bring Jill a casserole, please.  She is brave and strong and deserves your attention.)

She describes the exhaustion that comes with chemo by saying, "Even my fifteen year old cat was less lethargic than I was.  I looked on in awe and wonder as she got up every couple of hours and was able to stretch and change sleeping positions.  You know it's bad when moving at the speed of an old, lazy cat is your goal."   And, OMG, I have thought that about my 14 year old cat many times.

 She describes her flap surgery, which is not "blue skies and fluffy white clouds" and which caused her several complications.  You and I would freak out about having an open sore on your stomach pouring fluids of various colors - but she was grateful because it gave her more writing material.  That's how crazy she is.

I have always believed the best way to get through a frightening, tragic, scary event is with humor.  Jill obviously believes this too.  And, she did what I couldn't do - she wrote my book.

Even though I didn't write it, I believe this book should be given to every women who has a diagnosis of early stage cancer.  Put it in a gift basket with a bedazzling kit for jazzing up those hospital gowns, and a copy of my blog URL to assuage my jealousy.  Not only will this book help a woman know what is coming - I still remember how confusing those early days were -  but it also gives them a guide on how to emotionally manage a scary event with humor.  Anything that helps lighten the load is a good thing, and this book definitely lives up to the statement that "laughter is the best medicine."

Most women do survive a cancer experience and Jill has made it abundantly clear that she expects to be one of them, and her attitude is infectious.  She's currently a year past treatment and doing well enough to write a book, so that's also encouraging.

If you want to see a book written by me, then go buy Jill's book.  It's as close as you'll get. In the meantime, I guess I'll stick to pendants.

When Good Boobs Turn Bad: A Mammoir:  funny, homey, smart, helpful.   (The links will take you straight to buy the book in paperback or kindle.)

This concludes the review of this great book.









(Part II of How to Survive Cancer will be coming soon, I promise)

My first necklace

EDIT!  The product sold ALREADY!  That might be a record.  Thank you, S.  I will send it out on Monday and I will have more up in the coming days, all unique and different.



Hey boys and girls. A quick note before my next two real blog posts come up.

I'm feeling healthier (yay!) but obviously can't work.  I also have a child who is a senior in high school and a husband talking retirement.  I have decided to sell necklaces to help add to my son's college fund and senior year activities.  I realize that I may only buy a tassel, even with lots of sales, but that's okay, I am contributing.

I fell in love with these glass tile pendants and thought that I would make some.   I like them so much, I thought you might too! I have lots of designs drying and lots more in the works.  In fact, there is glue all over my house and my cat has a toothpick stuck to her tail.

There are glass tiles out there, but so far, mine are unique in glass tile world as they are collage with embedded items, not just pretty paper.

So, below is my very first one that's ready for sale!  How exciting!

Some coming up are cancer-related (and yes, pink, but I will do all the cancer colors, and in honor of my friend Sarah, gone over a year now, teal will be coming up soon.)  Of course not all of them are about cancer.  

Each one comes with a hand-written letter about why I made that particular design. I also have a liberal return policy - if you don't like it, ship it back, no questions asked.

If you order from me, I will mail it within 2 days after payment. Remember, I'm new to jewelry making but I think they came out okay, and I wear them so I figured you would too. I will do a special page to put them up when I get photos taken of more of them (I'm waiting on gold pieces) but for now, I was so excited that I finished one that I wanted to share it immediately!

Don't worry, Part 2 of my "How to be a Survivor" is coming up soon, as is a special review about a book I read.

In the meantime, even if you don't buy, I would appreciate a like on facebook!  Oops, I forgot to watermark it.....next time.  :)

Here is a photo, apparently once they are sold the entire listing disappears.  But you can see what you missed:
 

How to be a Cancer Survivor - Part 1

An online post about 9/11 sparked a conversation about whether we should "never forget" or whether we should "move on" from that terrible day.  My argument was that the two are not mutually exclusive, they can both exist at the same time.  My example was cancer survival.  Many woman move on.  They can never forget such an indelible experience which leaves such visible scars,  yet they manage to put it in the past - it becomes a bad dream they remember once in a while.

Then there are those who don't move on; who daily talk, think, and live cancer  - sometimes years past diagnosis and treatment.  I'm not talking about those of us like me, who are in endless therapy.  I am referring to women who were early stage, whose treatment is long past, and yet their cancer diagnosis becomes the defining moment of their lives; their identity.  They are stuck in one moment in time.

That is understandable to me -a breast cancer diagnosis is a tornado that has attacked the very foundations of home, and nobody is taught how to rebuild.

What do I mean?  Monday, a woman finds a lump.  By Wednesday, she is diagnosed with breast cancer, details as yet unknown.  She is going to die, she's sure. By Friday she's learned there are types, sub-types, and more sub-types; she's floored to learn it isn't really one disease after all.  In the coming days, she learns jargon such as HER2+, ER+ or ER-, Triple Negative,  the TNM staging system, Oncotype DX, BRCA genetics.  She must learn what a sentinel node biopsy does, statistics and odds about types of breast surgeries, radiation facts, differences in breast reconstruction. She's poked and prodded and thrown into MRI after CT, sees surgeon, plastic surgeon, oncologist and back again.  She must make crucial decisions very quickly, ones that she feels unqualified to make based on information she didn't even know a week or two ago. She worries that it is life-threatening to take the time to become informed enough, so she dives in and spends days and nights reading about breast cancer: books and websites, forums and blogs.  She reads journal articles with a medical dictionary by her side.  Her life truly becomes consumed by cancer; it is a full time job at first, often with four or five appointments a week, and tons of homework.  She's thrown into this cancer medical blender and can't get out.

Personally, she is bombarded with friends and relatives telling her about somebody they knew who died of her cancer, or giving her wacky alternative theories or sharing some diet they believe kept somebody alive, and now she has to research those as well.  As decisions are made and treatment starts, she takes time off work and normality, and her world changes to that of statistics and odds, scrubs and nurses, medical offices and waiting rooms.

She is the center of this world, and all eyes are on her. Doctors take seriously every ache she describes, nurses focus on her, friends bring food, family comforts her and appreciates her anew.  She's brave, admired, told she's remarkable and special, heck, there is even a special color just for her.  She is no longer the mom in the PTA, she's the mom in the PTA who has CANCER, and is treated accordingly, either with extra kindness or with unwarranted avoidance, but whatever it is, she is now different.

Eventually, she relaxes and becomes part of the process. She knows by first name everybody in the medical offices, she makes friends with other patients.  She learns she is not Stage IV, she is not going to die, not soon anyway.  The terror lessens but doesn't leave entirely.   It is comforting to see a doctor regularly, to know that medications are actively fighting cancer. She may spend a year being treated, or a few short months, but it doesn't matter, it's CANCER and it's her life.

Then her last therapy is over: the chemo bell rings or the certificate is handed out or her rads end or surgical staples are pulled.  The long-awaited day occurs -  she's finished. She's out the door.  She's declared cancer-free.  She's back to her old life.

And many women reel, not knowing what to do.  It's like being dropped into another country with the same name as the old one, one that looks familiar but is no more.  She is left with a mangled body, often with mechanical defects, body image and sexual changes, medication side effects, conditions nobody has told her would happen,  She has a body that has made CANCER, that has betrayed her,  and she doesn't know why and nobody will ever be able to tell her. And, it can come back, early stage or not, even years later.  Many women enter a psychological prison of fear.

Fear of having to do it again, of it coming back locally or fear of it metastasizing and that she will end up like me, end-stage.

I am certain that many women who have been through cancer treatment develop a form of PTSD due to the intensity of the experience.

But all she is told now, once therapy is done, is that she's a Survivor.  She's given unhelpful phrases like "New Normal" and to figure it out on her own and get back to life with no details about how to do so. She doesn't know which aches and pains are side effects or leftovers from treatment, which could be cancer, which would have happened anyway (yes, cancer patients get normal-sick too).  Nobody has explained that tamoxifen causes bone pain, that shoulder problems are common, that scans are frequently open to interpretation.

Friends and family, having watched helplessly by the sidelines, are ready for it to be over, and begin to get frustrated when it doesn't end for her like it does for them.  She feels pressure to move on, but doesn't know how.

Many woman can do it; they can take a deep breathe and move forward and put cancer in the past.  They jump right back into the pool of life, shocking and cold as it may seem.  Many cannot, through no fault of their own.  They dip a toe in and pull back, dip a toe in and pull back, over and over, never getting in over their knees; the fear is too cold, their heart races with each dip.  Some women become stuck in a cycle of fear and appointments, fear and tests, the fear being a return of cancer and the tests are because the doctor must take complaints seriously. "With your history" becomes the catchphrase of her life.  A cough? Probably the flu, but "with your history" they run extra tests, which send women spiraling back into cancerland, certain the result of this test will show spread.   Some women live that way for years and are either always miserable or have periods of calm and peace pierced with flashes of misery.  "My back hurts.  Is cancer coming back?" they wonder, even the day after falling off a ladder.

These women with early stage cancer sometimes write me, the dying one,  to ask for help, that's how desperate they are. "How did you know it was back?  How do you do it?  How do you live with fear?"

It's a huge problem that the medical world doesn't address.  In one of those many cartoonish brochures you receive explaining treatment options,  there is usually a line or two about "woman may feel lost as treatment ends, but that is normal." and ..... period.  Okay, it's normal.

Now what?

I really think there should be a post-therapy cancer class, so women can learn to identify when to be nervous, what to expect, and given tools to manage their lives after treatment.  Included in this class should be physical therapy so women who have had reconstruction can learn that their body function has changed and strengthen the muscles necessary to avoid pain that may now be normal for them.  It never fails to amaze me that they can remove a body part, split chest muscles in half, put an implant inside, and then expect people to have full functioning with no re-training in balance, or strengthening in other compensatory muscles. Many, many women suffer shoulder and back problems post-mastectomy - and most of them think for a while that it is cancer returning.

Yes, I am the terminal one, the women everybody is afraid of becoming.  But still I understand what women go through.  I only had a few months after treatment ended before being diagnosed with mets, and in hindsight, I was likely Stage IV from the beginning.  But I didn't know that, and so I understand the nerves that come.  I did not live in fear those months, on purpose.  In fact, I was about to shut this blog up and go away and leave cancer, in all its forms, behind.

I cherish those months before I was diagnosed with metastatic disease.   I look back on them as last vestiges of my thinking I had a future, with plans and dreams like a normal person.  I miss the days when I could see something online and not think, "Oh, my friend will like that for Christmas, I hope I'm alive to give it to her."

I want women to cherish their time post-cancer too.  Whether cancer does come back a year later or more likely  never, they should love and enjoy their lives as quickly as they can.  I don't want women to look past beauty to the fear.  I want them to look past fear to the beauty.

I know they'll never forget, but I want them to move on.



In Part 2, I will have suggestions on how to accomplish this goal, and steps on how I had planned to do it.




.

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.  

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?

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.