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.



  1. Im so glad you are past this step in the process. I had been thinking of you and hoping that it would go well. At least as good as having needles pierce your liver can go. Your bravery and honesty fills me with admiration and usually my eyes with tears. Thinking of you, as always.

  2. So glad that your procedure went as well as can be expected. Love your play by play... gives us all a little insight if we ever have to go this route! Heal quickly!

    1. I'm cleaning out the old "computer room" and turning it into my "scrapbook room" so I guess I'm healed! :)

  3. And always, the sense of humor remains in tact. I'm in awe of you, Ann. I really am. I hate that they can't do things like that while you are in blissful sleepy land. Ya know.. that needle in the arm... count backwards from 100... AS IF... and then you hear "We're done, you did great" as if we'd actually done something to facilitate the procedure....

    I hate that you were in pain. Really hate it....


    1. You know, they never do that countdown thing... :) Anyway, it's over now, thanks for commenting!

  4. I just want to add me too...I feel that doctors need to go through these kind of procedures before they attempt them on others...then they'd know to give pain medication that actually works...I hate that you were in so much pain...

    1. On the other hand, one of my doctors had an injury and took dilaudid in the hospital and he said it knocked him out for days. Whereas for me, the same dosage probably wouldn't have made a dent. So you never know! I wouldn't want them to think because they only needed a little, that's the way everybody is. :)

  5. So sorry to hear that they could not (or would not) make it painless for you - but glad to hear that it was successful!


  6. What an ordeal! Freaky to have metal sticking out of you like that! They should have had you play a role in Gray's Anatomy while you were appropriately outfitted!

    I hope you get your breath back and can be comfortable soon!

    1. I've never seen that show! Weird since I usually like the medical shows. I'm doing well now but have been doing too much housework and now feeling twinges. I better respect that and sit. :)

  7. Ann, you inspire me every time I read your blog. I do not have cancer, but I have fought Crohn's Disease since I was 11 years old. I am a nurse (not practicing because I am a full-time mom now!) and I have always believed everyone in the medical profession should be a patient to gain some insight as to what procedures actually feel like, especially the painful procedures you have endured. I am inspired by you, I admire your strength, and you are in my thoughts and prayers daily. Thank you for sharing your journey with the world. I am praying the SBRT is successful and that your pain subsides. Take care and God bless!

  8. I'm so glad this part is over for you.

  9. You are my hero. Feel better soon.

  10. I rarely literally laugh out loud, but the Mrs. Magoo/ Lucille Ball reference did it for me. Thank you for an excellent, honest description. Good work, my friend. Soon may you fly. (Do airplanes count?)

  11. I always check in here to check if you are getting better, but I never comment. You have been a small part of my life for a couple months now after i saw the My Last Days-video, I always take my time to read your blog and I have to say it's well spent.
    I'm not a good writer, but I just had to write something. Hopefully my prayers all the way from over here in Norway will give you strength somehow to progress on and get better. I know it's not much, but at least it's something.
    I really care about you, strange to say.

    Stay strong,

    Jan, 22 yrs old, from Norway.


  12. Hi Ann,
    I was searching around the other night and found your blog. Needless to say, I was wide awake until 2am reading. I am newly 30 yrs old, diagnosed with breast cancer 11.8.2012, stage IIIc, triple negative, blah blah blah (you know the lingo all too well :) Since November I had a 4.7 cm tumor removed and a breast 'amputation' (as I like to call it) with node dissection, and 24 rounds of chemo (A/C, taxol and taxotere (which I was crazy allergic too), and finished with a CMF cocktail). I have been chemo free for two weeks! Have 6 weeks of radiation and another surgery to go.
    So, there's my stats! Anyhoo, I wanted to thank you for writing your blog in the great detail you do. Thank you for hating pink (which, BTW was almost the exact statement I made when I had my first Mammogram). Thank you for not sugar coating the struggles and triumphs for women living with cancer.
    I hope your night is peaceful!
    P.S. I live in Roseville and was shocked you were in Sac! ;)

  13. Of course, what a magnificent blog and informative posts, I will bookmark your site.Best Regards!

  14. Hope you are feeling good today, and everyday better....

  15. Your blog is both informative and an inspiration. Hope you and your liver are feeling better soon and that this new treatment will be successful and worth the pain.
    They always seem to underestimate the pain, fatigue, side effects, etc. Don't they? I had one procedure where they used something called twilight sleep plus local anesthesia. Thank God for the local, because although I was unable to move or talk, I could have repeated the whole last part of the OR conversation back to them afterwards and I could feel when touched in other places.
    I was diagnosed Jan. 2012 with stage III inflammatory breast cancer and have been reclassified as stage IV due to recurrence in my spine. Each day is a gift.

  16. Hi from Val the Cancer Newbie! I put a link to your blog on mine, I'm rooting for you all the way!!

  17. So glad you are passed yet another horrible procedure and am hoping that you get good results. Thanks for sharing your story with such wit and candor.

  18. You are absolutely a hero for holding that pain out... I was almost sick when reading, I so can't tolerate any pain I managed to kick the assistant in the teeth at my last CT scan (I think this definitely counts as my worst hospital moment)... It was awfully embarrassing. I don't know how you don't make those physical reactions I think I'm gonna have to be tied down next time or something :(

    As of the cold - the lower the temperature the less bacteria can stay alive so this is on purpose. There is a string of bacteria (check MRSA for example) that are extremely dangerous and linger only in hospitals so this is why it is good not to have warm air and possibly not touch anything at a hospital.

    Wish you a nice week.

  19. I keep wondering how you are doing. Praying for good news. Your humor with all the breast cancer indignities has helped me to get through them. I am in radiation treatment and hoping yours goes well!

  20. Ann,

    I'm the publicist who reached out to you many moons ago and solicited your time to read a rather terrible romance novel about breast cancer. You graciously accepted my pitch, read the book and gave it an honest review on this blog. Needless to say, I haven't stopped reading your blog since I first found it over a year ago during my publicity campaign for that author. Your humor and grace continues to amaze and inspire me, and I think of you and wonder how you are often.

    Glad that nasty needle business is out of the way!

  21. I just saw your comment to Allie Brosh (may 9th), and thought I'd leave this here: *Hug*

  22. My hospital clothes are a men's pair of super-soft, slouchy trackie bottoms, clean undergarments and fastening-free bra, loose t-shirts and a pair of crocs (totally acceptable in bed, corridors, parking lot and x-rays) plus socks in case I need MRI on my legs.
    Fastening-free bra also means metal-free, and crocs are metal-free, as are t-shirts. I occasionally wear loose sloppy shorts underneath the trackie bottoms so I'm comfortable and decent in the scan rooms, and so long as I'm not having my foot scanned, I can pretty much always keep my crocs on in the scanner.


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