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.

SBRT begins today - or does it?

This is not a real beach

I went in for my first SBRT radiation treatment today.

By today I mean this morning.

By this morning, I mean too effing g-d early.

I'd been told that they would do a dry run, and then if all went well, move on to the actual radiation.

Apparently, all didn't go well.   After the first dry run they took me aside and told me there was an issue. The problem seemed to be the fact that I was still breathing. I was just minding my own business, taking in oxygen, the way living people do.  That caused some distressing movement of my liver. Hey, if they wanted me not to breathe for this procedure, they should have waited a year or so, but for now, they have to figure out a way to live with my annoying habit.

They told me that the fiducials were moving up and down and asked me if I was nervous. My truthful answer was no, because for some reason, these procedures never make me nervous.  I find them too interesting, even when done on me, to get scared.  And as you know, I'm too ADD to think ahead to any potential problems.   So my fiducial movement was not caused by fear.

I had herceptin yesterday, which causes a lot of nasal drip as I have described before and my guess is I was probably swallowing and trying to manage that too much. So when I went back to try again, I let whatever was flowing flow, and I also pretended that my liver was pinned to the table and reminded myself to only use my lungs to breathe.  Shallow in, shallow out, no moving the stomach.  Considering they had my midsection pinned down by a giant clamp screw, I'm not sure how I moved it in the first place.

They said it was much better the second time around, but still didn't give me radiation. The dosimetrist has to make adjustments.  Maybe the fact that I've lost weight again also plays a role in that, but I don't know.  I have no clue what they base the radiation dose upon, but whatever it is, I'm glad they are careful, and I now wait until tomorrow.

It has become crystal clear that most people fantasize about lying on a beach as their "happy place."  I have yet to be in a hospital scan room or nuclear imaging center where there weren't scenes of beaches on the ceilings and walls. Usually, a few of the ceiling light tiles have been replaced with photos of the undersides of palm trees, so you can imagine that you are lying on a lounge chair with an umbrella drink, looking up at the trees rather than having radiation injected into your body to track your LVF. Sometimes the walls, too, have scenes of beaches although I've often wondered why since lying on your back, there is no way to see them. There are never photos of a forest, or a desert, or a meadow.  It's always a beach.

I suppose medical professionals (or more likely designers) think that when somebody is sticking needles in your liver and digging around in there, causing exquisite agony, all you need for comfort is to look over and see a photo of the ocean.

For the record?  An injection of dilaudid would be better.

My radiation room is no exception - there is a large photo of a lovely aquamarine sea;  large rocks jutting out from the tranquil water.  It was serene and lovely, until you imagine talking a walk out to that rock to bask in the warm Caribbean waters, when suddenly a hurricane comes up. There you are, stuck on this hard boulder, cold waves battering you, dark clouds above, lightening  flashing through the sky and striking the water, high tide rising around your feet - your shins - your waist - as the rock gets more and more slippery and sharks circle hungrily beneath, and you with no way to get back to the safety and comfort of your radiation machine.

Not that I imagined that.

While I don't know what the actual radiation is like, since it looks and feels invisible I don't expect it'll be much different from the dry run.  I was lying on a table, on that plastic bag made just for me, filled with the rock-hard beads that had conformed to my body, arms over my head holding on to posts, belly exposed as techs pushed and pulled and adjusted.   They found my tats and marked me up with little X's, put the medieval screw type device on my stomach as a reminder not to breathe (ha ha), red lights on the wall flashed, green lasers shone on my belly,  and the machines started up to dance and whirl around me.

The noise started slow and built to a whine, exactly like a jet engine or an LG Direct Drive Washing Machine.

So, tomorrow, for 100% sure,  I go get my liver sterilized. I hope it works as well as my washer, with fewer side effects. Wrinkled clothes are bad enough, I don't need vomit, jaundice and ascites too.

Okay, okay, I get it, I'm sick

Thursday night, the phone rang.   It was my sister, saying my 83 year old father was very sick and she wanted to let me know.  He was at home but had been having bloody diarrhea for a week.   She suggested he go to the hospital, but he refused.

I called him.  He answered, but sounded very out of it. Difficult breathing, long pauses between words  - the weakness was leaking through the phone line and I could literally feel it.  I knew this wasn't good.  

He sounded like me the day I went septic from c-diff.

I told him he needed to be hospitalized, and now.  Many of you know that I don't rush to the hospital often, and my doctor has agreed with me. I don't automatically tell people "Go to the ER."   But there are times when you have to go and this was clearly one of them.

He said, "I (deep breath, long pause) am  (deep breath, long pause)  going  (deep breath, long pause) tomorrow  (deep breath, long pause) at  (deep breath, long pause) 10:00 a.m. (Pant pant pant)  I asked him why he was waiting.  He had no good explanation.  "Because I am."   I again told him he needed to go right now; I was not sure he would be alive in the morning, it sounded like he was headed towards shock.  I asked if anybody could take him - I asked if I could call an ambulance.  He was worried about his dog, so I said "Go to to the hospital and I will go up tomorrow and stay with your dog."  I was not going to let it go unless he went, and if he had said no, I was going to call an ambulance anyway.  He resisted.  I know he's afraid of hospitals and doctors, so  I explained what would happen:  they would intake him, give him IV fluids, likely do a CT scan to see what was happening.  He would feel better with the fluids and then be able to be treated.  He would not get better at home.

If he didn't go, he would get septic and die.

He must have been feeling as bad as he sounded, because the stubborn old man agreed; I'd broken down all his objections, and knowing what would happen in the hospital helped, I think.

Now, to backtrack:  I have not been able to go see my father in a year.  He lives three hours away by car, which is the only way to get there.  He lives in the mountains, which means the roads are often closed during the winters and medically, I can't take the chance of getting trapped up there, so summers are the only time I can go.  I believe the last time I saw him was in July of 2012.

I have not been healthy myself after four years of chemo; the ride is long and exhausting and it just takes a lot out of me.  There is one other reason:  my father is an alcoholic. Visiting him means going to bars which I don't like to do, and it means watching him get drunk, and it means meeting his alcoholic friends instead of talking with him.  It seems pointless to go when he is always surrounded by people.

Our relationship has faded.  He has sometimes became nasty on the phone to me when drunk.  After the last time, I finally drew a line:  I told him I loved him but I am at the end of my life, and I can't tolerate any more drunken conversations, especially ones that outline my past faults, which I can do nothing about (even if they were true).   From that moment on, he was only to call me when he was sober.  Because he begins drinking at 9:00 a.m., I would not call him, but would be happy to hear from him at any time after I get up at 10:00 or 11:00.  I told him that calling me sober meant no alcohol on board at all, not the couple of drinks that he thinks is like morning coffee.  I said I hoped I'd hear from him.

I didn't.

It hurt my feelings that he never once considered waiting to have his first drink so that he could call his terminally ill daughter.  But, it also was something, growing up in an alcoholic family (my mother died of alcoholism) I never expected would happen, so was not surprised.  Alcohol has always come first.

There.  The "secret" is out.

But of course, he's my father, I love him and I don't want him dying on his living room floor.   I wanted him to get to the hospital.  Right after our phone conversation, he called his neighbor as promised, and they took him to the ER.  I kept my bargain and went up the next morning.  My husband had to work so I took my older son with me.  After a nice visit with a CHP officer which will probably cost me $400, we arrived at the hospital, where I discovered that on this very frail man  - so frail that his entire upper arm was bruised dark purple from the blood pressure cuff - their method of first line diagnosis was to do an endoscopy and colonoscopy.  I felt a CT scan should be done first to see if they could diagnose him without invasive methods.  I went to the nursing staff, found his nurse and explained my concerns and asked if I could talk to a doctor.

She was immediately defensive and rude. "Are you a nurse?"  I shook my head no.   "So, you aren't a nurse?" implying I had no right to question his treatment.   "No", I said; "I just have been a patient for a long time as I have metastatic breast cancer."  She smirked at me and said she'd give the doctor my message.

Uh oh, she just labeled me a bitch.

The doctor did call and we had a vigorous conversation.  He said he'd been doing his job for 30 years, that he thought this was the best method of diagnosing what was wrong.  I said that my understanding was that they thought he had some ulceration in his colon and that I knew there was a risk of perforation with colonoscopy, and that my dad seemed so fragile and weak that I was concerned about the anesthesia as well as the procedure, and wanted to know why they didn't start with a CT.  He said that the contrast would not be benign and there were risks with that too.  I said that I thought the risk were more with the tests he wanted, but after some back and forth, he convinced me that he was on the right path, so I felt better about their methods.

But then not an hour later, they changed course and decided to do the CT.  I am not sure why as I wasn't in the room when they came to tell us.

What it turned out to be was a colon infection along with symptomatic anemia.  They gave him a blood transfusion, put him on IV flagyl as well as two other antibiotics and treated his alcoholism with valium and IV vitamins and nutrition, which they called a "banana bag".  He was also dangerously low on potassium and severely dehydrated -  his idiot primary care physician had prescribed long-term Lasix for an alcoholic without recommending potassium supplementation.  The GI doctor came in and shook my hand and I apologized, saying I didn't meant to question him but I was concerned.  He said that I should question, and it was good to talk to somebody who knew what they were talking about.  All I have to say about that  is I wish I didn't know what I was talking about.

So, for the next four days, I sat in the hospital, seeing that my dad got the care he needed, that he was put on the pot promptly and not left there, that he got changed and bathed - everybody in the hospital needs an advocate when you can't care for yourself.  I spent time calling around and arranging for 24 hour home CNA care for when he was released, talking to his helpful case manager, Kelly and getting home PT as well, and sending my husband (who came up the next day) out to get portable shower stools and pottys for bedside.   They wanted to release him to an assisted living place but my Dad was adamant that not happen, so it was critical I find 24 hour care.

Like all hospitals in my experience, you get great care and you get terrible care, depending on which nurse you have. Andi, his day nurse for four days, the one who needed me to be a nurse to ask a question,  was lazy and sometimes rude.  She only came into the room once per shift, and trust me, Carson-Tahoe hospital is not a busy hospital compared to the ones I've stayed in. (In my experience, the RN should come in once per hour.) The hospital was silent and empty and nothing like UCSF or even Mercy in Sac, and every time I walked to the desk, they were sitting there chatting.

There was one time when the woman in the next room started screaming "Help, Help!"  The housekeeper was in our room and she said, "Oh the nurses won't pay any attention to that" and they didn't.  We were near the nurses station so it was impossible not to hear, but they seemed to spend a lot of the day gossiping with each other, and why get up from your conversation about the Royal Baby for a patient who is yelling for help?  The housekeeper didn't go see either, she kept mopping.  My husband and I couldn't stand it, and he went to see what was happening.  There was an elderly lady, lying on the floor, having fallen out of bed.  If my husband hadn't intervened and got the nursing staff, she may well still be there yelling "help."   When my husband said "there is a lady on the floor in here"  about six people came running so it's not like they weren't around - they were just doing exactly as housekeeping said:  ignoring patients who yell.  God forbid you don't push the button.

On the other hand, all of the night nurses were amazing, one in particular, whose name I didn't know because I had to leave for the day before I met her.  She spent two hours talking to my dad about his drinking and suggesting that to be successful in recovery that he move to live with one of us, and she even called my sister to make sure that was possible.  (It always has been.)  She told my sister than she didn't usually spend 2 hours with patients but something about my dad made her want to do it.  He can be quite charming.

Jacob, a CNA, was super caring when he came to do my dad's toileting, a frequent job as it always is when somebody has an infected colon.

So, you would think sitting in a hospital room, hunting down aides and making phone calls wouldn't be too physically taxing.   You would be wrong.  My first day, I was raring to go.  By my fourth day, I could hardly walk and no way could I have driven home.  My legs were shaking, my knees barely held my weight and I was simply exhausted.  I felt hollow, liver pain intense, unable to go on.   I wasn't eating right and the one time I went to get some soup, my dad called freaked out about something so I went back.  I felt pressure to get everything accomplished before I gave out and had to go home, which happened Sunday.  Fortunately, my sister decided to come too, so we crossed paths.  My father has 24 hour care now for the next couple of weeks, and my sister is keeping an eye on them to make sure they do a good job, at least for the next few days until she has to go home. Hopefully, he can recover enough to move in with her in the next few weeks. She has a gorgeous house and a nice private bedroom.

It will be a long recovery but with sobriety and understanding that it is a process and not something that happens instantly,  he will certainly make it back to where he had been before this illness.  It took me 3 months to recover from c-diff.  I was sicker than he is now, but also younger.

Why did I go?  My sister has done all the checking in on my father for the past year and I felt it was my time.  My unemployed brother is too selfish and lazy to help, although he lives just an hour further than I do, so we know that was not a possibility.  In all the four days he was in the hospital, my sibling only called once and didn't recognize my voice when I answered the phone - in fact, he aggressively and rudely questioned who I was:  "Who the hell are you?"  I said, "Nobody you know" and put my father on the phone.

The last two weeks, I'd been feeling stronger, feeling good enough to start picking up around the house, organizing things, getting ready for the exhaustion I hear will happen after SBRT.     But doing something simple like sitting in a hospital took it all out of me.  I now have a recovery ahead of me too.

I am not going to be able to do it again.

I now believe.

I'm sick.  I'm really, really sick.  I guess I never really did believe it before, but it is true.  Even if I feel okay, even if at home I feel relatively normal, and start doing normal things -  I can't do what healthy people do.

It's a hard thing to wrap your brain around sometimes,  that any expenditure of energy can wipe you out for days or weeks.  I'm only in my 50s and this is frustrating.  And, of course, it means that my sister has to do everything in regards to my dad.  I feel like a deadbeat.

My doctor said chemo was killing me.  I think he was right.  I can only hope this SBRT gives me a reprieve, and once I heal from that I can heal from chemo at the same time,  and my body will get to do all the things that my brain thinks it should do, for however long it lasts.  But I realize now that permanent damage has been done and I may never be normal again, even if this SBRT gives me another two years.

Let me say, I'm very proud of my father. My mother's death caused a downhill slide as far as his drinking went, and I imagine it is very hard to quit.  Drinking has been a big part of his life; with all his friends in the drinking world, sitting in bars, partying constantly - so the fact that he is determined never to drink again makes me very happy, although I know it will be a struggle.    He has been told, and it is the truth, that any more alcohol will kill him, and he'll die in a hospital, a place he hated.   He is taking that seriously and I hope that it lasts once he starts to feel better and the memory fades.   Taking the steps to recover at 83 is a remarkable step of courage, and I will look forward to many clear-headed conversations with my dad.

SBRT Simulation

The day had finally arrived - setup for my SBRT radiation.  (The actual radiation is scheduled from July 25th to August 1st.)  First,  I met with the doctor, who allowed me to ask any questions, and then I signed the forms agreeing to the procedure.  Then a nurse came in and started an IV.  I gowned up, and she took me to yet another CT scanner.

I'll bet I'm in the 20ish range for CTs now.  But who's counting?

I'd been sick a week ago and was unable to get out of bed from Saturday to Wednesday, so I had lost some weight - I was down to 94 pounds.   When they took my weight  I was pleased to see that I had gained a pound back, but not so pleased at this particular CT scanner.  It was the first one I'd ever seen that wasn't padded.  Ordered to lie down, my skinny arse and bones had to lie on bare wood.

Not for long.  Soon, I was swarmed by radiation techs who seemingly came out of nowhere.  They were shoving pillows full of foam beads all around me.  I had to position myself on my back, hands holding these handles above my head while they push and pulled and smooshed the bean bags against me.   They were packing me tight, tugging my clothes and underwear down, pulling my gown open, and taking my shoes off, pushing, pulling and patting until I was finally in the right position.   Then they put this weight on my stomach which is to remind me not to take any deep breaths - shallow breaths from the top of my chest only.   Then they put me in the CT machine and did a scan.  They gave me contrast, and in and out I went, painful frozen shoulder growing numb, trying so hard not to take a deep breath that I almost passed out.

I realized I have gotten in the habit of taking a very deep breath every few minutes - probably due to chronic anemia, and only then did I realize what a powerful habit it was.  So now I have to learn to breathe all over again.

After the scanning, they had me in the position they wanted that would enable them to best go after my tumor, and so they sucked the air out of the beanbags so it would hold the position, exactly like those space bags you get at Bed, Bath and Beyond.   They took photos of me, my arms and my hands so they could recreate it.  Then they put tattoos on me to mark whatever it is they are marking.  These are not interesting tattoos at all, and really, if they are going to stick a needle into ink and jam it into your body, you should at least be allowed to have a little star or something.  But no, you don't get designs, they don't use a tattoo gun, they just dip a needle in ink and slip it under your skin.  The marks are tiny and black and they just look like blackheads, and I'm sure I'll be trying to scrub them off each time I see one..

My appointment for the 25th will either by a dry run or real radiation, depending on how they feel things go.  In attendance at this party will be me, all of the techs I just met, as well as a Physicist, a Dosimetrist, my doctor, nurses, etc.  So it is quite the team designed to keep me safe (and not one you want to stand up).

I feel better about doing this.

Cancer?  Prepare to die.

The doctor and nurse have both told me that my main symptom will be fatigue.  My only question to that is:  how will I be able to tell?

Butterfly Pinned to a Cork - Fiducial Marker Placement

You've seen those butterflies pinned to corkboards, of course.  Probably on some field trip or at a museum where you had no choice but to see these poor, disgusting creatures, stabbed and cataloged for your amusement, their hideous skinny bodies pierced clean through by a long stickpin with a round identification number on the top.  Their wings are wide open in display like they are in flight.   Yet, not only can't they fly (because they are pinned to a board), they aren't even alive.

That was me on Fiducial Friday.  Pinned like a dead bug.

Except for the dead part, thank goodness.

To recap:  I needed fiducials, aka markers, placed in preparation for SBRT, aka known as Gamma Knife, aka known as CyberKnife, aka known as TomoTherapy. (What it is called depends on the equipment rather than the treatment, which is all the same).   Fiducials are the little markers that they put in your liver around the tumor to better see the cancer and help track the movement of the tumor as you breathe.    Even though the surgical knife is made up of invisible radioactive particles, it can still cut sharp, and you definitely don't want it cutting the wrong spot on your liver.  That makes the markers necessary.

There is only one way to get those markers into your liver, and that is straight through your skin via needle.  A needle, I might add, thick enough to hold a marker.  They are about the size of a grain of rice, from my understanding.

This procedure is done on an out-patient basis.  I arrived to radiology right on time (for me) and after a short wait, was ushered into the back room lined with curtained off beds. These rooms are always 20 degrees too cold, no matter where we are:  hospitals, doctor's offices, treatment centers, exam rooms - all use too much air-conditioning.   It's like they can diagnose diseases by how many goose-bumps you have.   I could never be a nurse or tech for that very reason - I'd freeze and they'd have to do some rewarming techniques on me daily, or I'd be living in the towel warmer.

Being experienced in medical procedures, I have a uniform I wear to them now: velour sweat pants, matching velour zippered jacket (essentially Juicy Couture track suit knock-offs), a tank top, and a pull-up bra, like a Coobie.  I top it off with slip-on Tom's shoes.  Before I leave the house, I take off all my jewelry  including wedding bands.  With this outfit, whatever they want off me comes off easy, putting it back on is pain-free, and whatever I get to keep on is comfy and warm.  Plus,  I still look presentable to the public, like I actually got dressed.  Hey, if Eva Longoria wore track suits out to the store on Desperate Housewives, I certainly can to a medical waiting room. And, if need be, (and need always be) I can go straight to bed in it.  Talk about your duel-need clothing.

Although it was 108 on the day I went for the procedure, I really needed the jacket that came with it.

Really people of Sacramento.  You keep everything too cold.

After filling out all the forms and consents and spelling my name and gaving my date of birth, etc, they accessed my port for the meds.

Lucille Ball was my nurse, or perhaps it was Mrs. Magoo. She dropped everything she touched. (Maybe her hands were numb from the cold.)  She accidentally flung three separate things at my husband: various covers for equipment, the empty syringe case (no needles), plus all the caps and paper covering the bandages slipped to the floor.  She smacked me in the face with the blood pressure cuff, and left it there when I couldn't move so I sat there breathing in plastic. She dropped my paperwork more than once and got tangled in the curtains.  She was very kind, her actions were harmless, she joked about my husband needing a catcher's mitt, so she knew she was having that kind of day, and most importantly, she was safe with the sanitation. (I paid attention: no needles came off the floor and she threw away an open band-aid she dropped.  She was also very careful with the port access and double-taped it to be careful as my port sticks out far).  She was just very clumsy; it would be like watching my husband at work if he'd decided to become a nurse.

My husband is not known for his graceful movement.

The doctor came by, and although I'd talked to him on the phone, I again reiterated my bad experience with the biopsy.  He explained that he would add some painkiller to the versed/fentynl combo they usually give, and also said that years of chemo may have changed the tumor tissue so that it would possibly be less painful than before when my cancer was all fresh and raring to kill me, rather than the beat down, dispirited (yet still deadly), disease it is today.

In any event, it had to be done, so I nervously said I was ready, and off we went.

They wheeled me into a CT room, where I was comforted by my old friend the CT scanner.  Ah, the good times we have had together, that machine and I.... I can't tell you how relaxing I find a donut machine now.  Most of them have a panel on the ceiling with the underside of a palm tree or something in it, so you can look up and imagine yourself somewhere tropical.  This one had two panels by your feet, a beach scene,  super luxury for your imagination.  

The techs had me put my arms above my head, which is now sort of possible, if not pain-free, three years post my frozen shoulder diagnosis.  The left one won't go straight up though, the best I can do is touch the top of my head, elbow akimbo, so they tied it up in such a way that I could rest it against their strap.  Then they did a CT with contrast to get a good picture of the tumor.

I asked the doctor how it looked, and he said it looked the same "or maybe a bit smaller" than the last time, which made me happy as I barely get chemo these days and was half afraid it had grown huge.  And, apparently, there is still only one, which is either miraculous or he didn't mention any others since I didn't ask specifically.  Of course, he wasn't there to compare past CTs to what he saw currently so I didn't delve further.   He did say the tumor was wrapping around my portal vein and so it would be a bit tricky, but that was no surprise.  

He started the procedure by directing the nurse to give me the meds.  He asked me if I felt it and I said no, so they gave me a little more.  I still didn't feel it but he didn't ask again.  He then began to numb the liver with lidocaine.  He put a very skinny needle down into the liver and put in numbing medication, drops of which I could feel splattering on my skin, or at least, I hope it was drops of lidocaine. That wasn't too bad, really.  Slightly painful and stabby and pinchy, but the needle was pretty thin.

Liver now supposedly numb, he started the process, which meant giving me .05 mgs of dilaudid first. (I take 8 mgs at home so that's not much to me, even via IV).  Then he placed bigger, fatter needles in my body, took some CT pictures, checked on the sonogram, and then began readjusting the needle.  When he got it exactly where he wanted it, he shot the fiducial in by pulling the trigger.   We had three to place.

My role was trying not to make moaning, crying noises, and to hold my breath when he asked.  I did clench my teeth a lot, and scrunch my face, which I have learned is called "masking" and an indication of real pain.

I wish I could tell you it was painless, especially if you are reading this because you are going to have one - but that would be a lie. A big lie, for it hurt quite a bit, as you can imagine - that is, if you want to imagine being bayoneted with a long, fat needle plunged deep into your body.  I suggest you imagine lying on the beach in Hawaii instead.

This is what the needle looked like only the top was blue

At one point. I was afraid he'd penetrated my lung because I suddenly couldn't breathe in anymore; I was only able to take very shallow breaths.  Oddly, a couple of places not only hurt where he placed the needle, but also I could feel it on my left side, which gave me something think about other than what was going on: "Why is this pain in my left rib happening?  Is a wire/nerve crossed? Was that from the resection?  How interesting OMG THIS EFFING HURTS!!!!!"

Halfway through,  they left me alone on the CT machine and went to look at something on the computer, which I hope was me and my liver and not some viral YouTube video (although "me and my liver" would make a good title) and I was lying there with that huge long needle coming out of my abdomen, waving over my head with each (very shallow) breath.   I truly looked and felt pinned, like a butterfly.    I was simultaneously annoyed that the nurse had taken away my phone at the last second, because that needle coming out of me would have made a great photo for the blog, as well as being curious about what would have happened if there had been an earthquake or fire or something and I'd had to get up.  Would I be able to get up, and would I have to walk out with that long needle protruding from my liver, waggling with each step?  Would that be fun to show the people in the waiting room?   I also was thinking about those medical ER reality shows I like - there is always somebody who falls on a fence post or somehow becomes impaled in an accident, and there I was, impaled myself, albeit in a medically controlled situation and with a much thinner implement than a fence. But, at least now I know what it's like to see something protruding from your body like they get to do on TV.  

Bucket list item: check.

After an hour, the last marker was placed appropriately and he shot it in - and that one I actually felt go into my liver.  It felt like bubbles, painful bubbles, bursting inside. I can't really describe it but I definitely felt it move in the liver, like firecrackers going off in celebration of the end of this procedure.  I realized I could not sit up to be moved off the table, even though I was no longer pinned,  so had an earthquake happened, I'd have been trapped and I wouldn't have had the fun of freaking the waiting room people out.  The nurses and techs did that thing where the grab the sheet under you, and lift you on to the bed.  They rolled me in to the post-procedure room, where they put on a blood pressure cuff and a pulse ox, and I let them do it on the right arm, which I haven't done since my mastectomy.  Knowing my luck, lymphodema is sure to follow.  I just couldn't fight it anymore.

The doctor came by and said he'd gotten all the markers in good places and was pleased with the results.  He said I would have to stay until my pain reached my "baseline" level, meaning the same pain I'd come in with, a minimum of an hour.  Since that baseline thing hasn't happened to date, I'm glad I didn't wait.  Doctors!  What is their world like, that they think a person can be stabbed in the liver numerous times and then feel normal in an hour?  

Maybe it's because of patients like me, because after the allotted hour, I told them I was fine, and I was released.

Bad as it was, it wasn't as painful as the biopsy, which had been so shockingly excruciating I nearly vomited, and they had to give me IV Zofran, which gave me hives, and which is where we learned I am allergic to IV Zofran.  But it was bad enough so that I'd prefer not to do it again.

Home, I went to bed and immediately slept for a couple of hours and got up feeling like an elephant had kicked me in the side.  I was still unable to breathe deeply, which is annoying since my red count is low and taking deep breaths every couple of minutes is actually how I get oxygen to, you know.... live.  But, I managed to eat some dinner.  And, I've had improvement each day and today, I can take a deep breath.  I recovered faster from the biopsy but either way, I'm okay now and didn't seem to get any of the possible complications .

Next step will be a PET scan on the 17th,  and then planning for the actual SBRT itself, which I understand is rather time-consuming.

After the biopsy, I said I would never do a procedure like this again, and guess what?  I did.  So I am not going to say that anymore.  The truth is, I will do whatever it is I need to do to give me more time on this earth, painful or no.

Sometimes though, I wish I could just flutter away, like an unpinned butterfly.