Sunday, June 9, 2013

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.


Saturday, June 8, 2013

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.