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.



 

Sad news

A few days ago, Kurt Lee, whom I'd written about here, here and in an op-ed in the Sacramento Bee, passed away.  It was announced on facebook, and I debated whether or not to put it in this blog.  Then I remembered that many people did go on the registry because of my post about him, and they may want to know what happened; my not wanting to say the words doesn't make it not be true.  It seems our stories overlapped a bit, and I feel tied into him.    Unfortunately, he got graft vs. host disease and his body couldn't overcome it.  It was shocking news, and I'm sick to think about it.

Cancer is a terrible beast and took one of our future's best and brightest.  Kurt handled every curveball thrown at him, and there were many, with grace and dignity.  I never doubted that next year, he'd be walking the halls of his high school, laughing with the other kids, participating in SciOly or whatever interested him.  My heart is incredibly sad for his family and their great loss.  I can't believe that kid who sat and played video games with my son is never going to do it again, and I can only imagine their tremendous grief.  I also can't believe I am still here, being treated, fighting for more time, when he is not.  He doesn't seem fair, even to me.

You don't know it, but you lost something too as this was a kind, decent young man who would have given more to the world than he took from it.

So, in his honor,  I hope that you will consider becoming a marrow donor, and be the giver that he didn't get the time to be.  Start by visiting the National Registry and signing up.

RIP Kurt.

~~~~~




Yesterday,  I had the fiducial placement in preparation for my radiation treatment. More about that later.

SBRT - Decision Made!

Well, where did you stand?

Did you guess "yes, she'd do it?"

Or "no, she wouldn't?"

Oh come on, you people know me better than that.  Of course I'm going with the latest and greatest in technical advances - I am one who got her iPhone 1-5 on the first days available, after all.  (And, the 5 is already full, darn it, I knew I should have gone with the 64 gig.)

After sort of speaking to my oncologist, who said it wasn't his specialty but that chemo was destroying my bone marrow and it couldn't take much more and he thought this was my best shot, and then talking to the Radiation Oncologist, who assured me that he thought I would do quite well, and that he and his team had discussed my case and he thought I would not be left worse off than I am now (my big fear) and who answered my questions, I decided to do the SBRT.

So here is the schedule so far:

June 7th, I have Fiducial Insertion.  (No, that does not mean I have a hot date with Donald Trump).  They will be putting little pure gold coils into the liver around the tumor, which will be super fun when I go through security at the airport.  These coils will help track the tumor through my breathing cycle so the machine doesn't send a shot of radiation through the wrong place when I inhale.   The fiducial marker insertion, he said, would feel just like a liver biopsy.

Uh oh.

I got a copy of the surgical report after my biopsy and they had written right into the report that I had experienced undue pain, so it's not just my word.   I am going to contact them ahead of time, ask them to read it and see what they had given me and then up it tenfold.  I'll tell them that I want more medication, better medication, different medication - something, anything, not to feel that I've been stabbed again.  In the ensuing years since that biopsy and today, I have been put on pain management medication, have developed certain tolerances, and whatever didn't work then surely won't work now.  

I know this must be done but they also must help me manage it better than the last time, don't you think?  Somewhere in the patient's Bill of Rights there has to be something about not stabbing a patient's vital organs without proper medication.

June 17th, after the fiducials settle, I'll have a PET/CT scan.  Ho hum.  After that, they start the planning process, which I'm sure includes very technical stuff involving Gy doses and positioning and the like.  I read that they create some sort of foam/bead bed that is designed to your body and keeps you in the same position each time, which should be fun.  Maybe I can make a "bead angel."  I will have five treatments, or fractions, probably starting the last week of June.   Then, I'll be done and we'll wait to see if it breaks up the tumor, via another scan in a few months.

Of course, it is possible that at this point, after the marker placement and scans they could say I am no longer a candidate - they may see cancer encroaching on the portal vein or something else disturbing.  

But if it's a go, here are the possibilities:

Best Case "One Can Always Dream for a Miracle" Scenario:  It destroys my tumor, and nothing ever grows back. I'm cured of metastatic breast cancer.  That happens approximately never, but I could be one of the first, you never know.  Here is one study where they called the woman cured; the only thing is, they only followed her for only two years.  That's one way to get the result you want. "Hey, we saw this 70 year old dude who didn't die in 2 years, that meant he lived forever!"    Personally, I wish I knew how she was doing now and if she's till "cured."   I'm guessing no but I'm a cynic who has never heard of anybody surviving this disease to live a normal lifespan.

Next Case, Most Likely, Good Scenario: It destroys the tumor for a while. I get to go off chemo for a year or two. (Although will still be on Zometa and Herceptin and ....perjeta? Not sure about that one.)     I get a break, get to do the things I want to do with my family like go college shopping with my son, see him graduate, decorate his college dorm room, and do all that with some modicum of energy and ability before the disease comes back and I must start chemo again.   This is what has been published about SBRT for oligometastatic breast cancer:    4-year actuarial outcomes were: overall survival of 59%, progression-free survival of 38% and lesion local control of 89%. 

Bad Case Scenario:  I do all this but it doesn't kill the tumor and I'm still on chemo and now with a radiated liver having to process these drugs.  I pee florescent and we have to hire guys from the Fukushima Daiichi Plant to clean our bathroom.

Worst Case Scenerio:  Something goes wrong, a beam hits the portal vein, liver function disappears and this blog finally ends.

A moment of silence for that.

So, there you have it.  Except for the fiducial placement, I'm okay with this plan.  It is a relief to have made the decision, whatever happens.


.

Stereotactic Radiation - Decisions

My last oncologist appointment was interesting.  We were discussing how difficult Gemzar is for me and how my blood doesn't seem to recover anymore.   My doctor stood up and said, "I'm going to make a phone call about you" and left the room.

I was left wondering who he was going to call about me.   President Obama to discuss me in context of health reform?  Angelina Jolie in the context of prevention?  His wife as an "I can't believe my patient said this" conversation?

Who?

He came back in and said that he called a doctor in Radiation Oncology to see if I qualified for SBRT, which is short for Stereotactic Body Radiation Therapy.  He hadn't reached the doctor but said he'd try again and get me a consult.

SBRT is like Gamma Knife, a more common term that you might be familiar with.  There are several different names for it, but basically, it is a highly focused beam of radiation designed to kill tumors.

Killing tumors sounds so easy, doesn't it?  

I wish.

Within a couple of days, I got a call for a consultation.  The radiation oncologist and I had a nice chat about my history, as well as some mutual friends we share,  and then he said he thought that I would be a candidate, my tumor is the size they like, but that he would meet with a group of doctors and discuss my case.  They would contact me in about a week.   He did say that because my tumor was so close to the portal vein, "very bad" things could happen, and also said that it was "risky."  He explained the process and then he handed me a tri-fold brochure and introduced me to his assistant, whom I am to call with questions - and left.

I figured I had some time to research this and talk to others who may have had it and get some kind of idea whether this is in my best interests, or if it's just going to make me weaker.  Weaker, at this stage, would not be good.  I am having whole days where I can't get out of bed anymore.  I am not sure my body can take any traumas.

But, the very next day, I got a call for an appointment to insert something called "fiducials" into my liver which helps them track the tumor through breathing movements.  (By the way, these fiducials are appropriately named - they are pure gold.  I will have a very valuable liver.)  That appointment is June 7th.

Clearly, I had misunderstood the intent of the consultation and what was to happen.  In the doctor's mind, it was a third date,  and in mine it was a handshake in the street with the promise of coffee later.

In the mail today, I got blood work requests and surgery day instructions.

Too fast!

Because I thought that nothing would happen until my case was discussed at the tumor board meeting, I didn't ask many questions, and yet things are moving on very rapidly, and I still have not entirely decided whether I want to do this or not.  As it turns out, I do have many, many questions about this.

Even googling and reading real literature and journal articles doesn't help me, as just about everything I find has to do with HCC or colon metastases.  Not only do I have breast cancer, but I have had a liver resection already so that plays into this decision.  Have they ever done this on somebody with half a liver?  The cancer is near the portal vein too, which is why he said this could be dangerous.   One cough and I could be left with no liver function.

It really could go very badly.

Let's keep up hope though, and say it is successful and does kill the tumor.  I could likely be off chemo for a while, which would be amazing.  Maybe I could even have a period of normal living again.  Maybe I could travel, visit friends and family and knock some things off my to-list.  Maybe I could just do normal things like cook and eat.  That would be incredible.

As we all know though, even with success, cancer will come back, and I'll need to be back on chemo at some point.  Will a radiated liver be able to handle the chemo that is to come?  Can they really be precise enough to target only tumor and leave the liver alone?

What about the resection - how does that play into it?

So I guess another date is in order because I don't feel I have enough information to make a good decision.

Back in the early days of metastases, cutting out half my liver wasn't something I even questioned.  I feel very differently now.  That surgery did me no good and I now know that things can and do go wrong in these cases, even in the hands of experienced professionals.

Do I want to risk what little life I have left?

In the past, I've had trouble deciding which pair of shoes to put on in the morning, or what kind of sandwich to get at Subway.....and now this is the kind of choice I must make.

How on earth do you make a decision like this?