A Morning At The Bionics Garage

Greeting humans.  I'm now officially a cyborg, all plumbed with a Super Port and ready to go for chemo.  The port was put in yesterday morning with no complications.  All hail our robotic overlords!

The only reminder of the procedure is a very sore spot on my upper right chest and some lingering sleepiness from the happy juice, and an official identity card and owner's manual.  The card is something I'm supposed to show other doctors and medical personal to let them know that I have an implant and what it's used for.  The owners manual explains the basics of having a port and who how take care of it (summary: don't mess with it yourself,  and don't let anyone but doctors mess with it). 

I started off as usual in the little room where you change into the fashionable hospital gown and the IV catheter is inserted into your arm.  Things must have been moving fast because barely 10 minutes later, I was wheeled down to the "Interventional Radiology" waiting area.  This is the waiting area before the procedure.  It must have been a slow part of the day because Leslye and I had the attention of three nurses to answer our questions.  We even had a nurse scare up a drug company's promotional poster explaining how a port works and what's involved in implanting one.  My port was going to be a "Super Port" capable of handling high pressure injections.  I wasn't too sure about the need for having high pressure piping installed, but the nurse said that in come cases, a CT scan will require a large amount of dye in a short period of time which requires that the stuff be shot into your veins under pressure.  Standard ports aren't rated for this type of use.

We both waited awhile before Leslye had to run off to her chiropractor appointment, She was extremely ambivalent about doing so; she was concerned that I might feel uncared for if she left.  I figured I had a whole hospital full of staff to keep me in one piece, so I could spare Leslye for an hour or so while she got some relief for her back pain. 

After Leslye left, I dozed in and out until it was my turn.  I was rolled into the procedure room and was allowed to keep my glasses on.  Usually if I'm not already knocked out, the room is a blur.  I was struck by how "cluttered" the place looked.  In it,  there was an entire wall filled with glass-fronted cabinets containing supplies.  A huge imaging machine (x-ray machine?), was in the middle of the room and there was even a calendar hanging on the wall.  One of the nurses explained that this wasn't exactly an operating room.  The actual procedure isn't all that complicated and didn't exactly merit a full operating room, but because of the huge risk of infection (germs can use the port as a direct route to my bloodstream), the procedure takes place in a sterile environment.

I shifted from the gurney to the table underneath the imaging device and everyone got extremely busy.  I couldn't tell what exactly was going on and at one point, when the nurse put some kind of sedative into my IV, I stopped caring.  It wasn't enough to make me doze off, but it was very wooze inducing.  I stayed that way and even chatted with the nurses about kids these days! and about our fine governor's plans to gut our state's schools and services.  There were a couple of times when the doctor performing the procedure asked me about pain (none) and warned me to lie still while the x-ray machine took a picture of the placement of the port and catheter.  I even started to feel halfway alert at the end of the procedure - not enough to drive a car or post a blog entry, but I was no where near the inebriated state that usually goes with post surgery.

After I was wheeled back into the radiology  I was unhooked from all the IV bags and such and was given time for something to go wrong.  At each stage after surgery or major procedure, patients are watched carefully by the nurses for a time to ensure that nothing was unplugged or sewn shut that shouldn't have been.  During that time I joked with a nurse that pouring some coffee into the catheter in my arm would speed up the recovery period - and she got me a cup of coffee!  I have nothing but the highest praise for the the staff at Lakeland Regional Medical Center.  I'm sure they've got their professional credentials in order, but they also do a splendid job of making you feel as comfortable as possible during a trying time.

After the appropriate amount of time in the Interventional Radiology waiting area, I was carted back to the room with my clothes.  More waiting for something to go wrong, and the catheter was removed from my arm.  I was officially freed from the hospital!  On the way home I simply felt tired, not the usual groggy fading in and out of consciousness state I usually have after surgery.  I even felt well enough to help Leslye prepare lunch when we got home and resolved to stay awake that entire afternoon.  Later on though, I decided to take a nap (for about a half hour) and ended up sleeping the rest of the afternoon.  Oh well.

Update 2/27/11

Someone suggested that while I was there, I should have gotten a Chick Magnet installed.  Now why didn't I think of that?!

Call me Cy

...for Cy Borg: a cybernetic organism.  That is, an organism that has both artificial (the chemo port) and natural systems (me).

Got a call from Paula, one of the chemotherapy nurses, to schedule the port implant.  Have to be at the hospital Friday at six-dark-o-clock in the morning. 

The hospital said to plan on it being an all day affair, though Paula said they don’t like to commit to any specific length just in case all the operating rooms are all filled up with more urgent cases ahead of me.  The average work time for a port is around 30-45 minutes plus the the usual pre-op insurance form filling and post-op anesthesia fog.   I’m counting on being there until noon.

Also got a call from the insurance company offering me the option of having a "case worker" for the duration of my treatment.  I don't mean to sound unappreciative, but considering all that's happened so far, the offer has come a little bit late in the game.  I had a case worker for my transplant a few years ago and again, not to be rude, but it didn't help or hurt one way or the other - just another person to keep in the loop.  I politely declined.

On the other hand, the fact that the insurance company is aware of my impending chemo and RT is good, because they've been notified and have seen fit to approve my treatment!   

It's The Little Things That Make A Difference

Today’s lesson is about (a few of) the side effects of surgery.  I certainly can’t complain about my overall health concerning MCC – I can work, I’m in no real pain and the prognosis is hopeful, but as with anything it’s the little things that count.  So for the sake of completeness for those who haven’t had any surgery (or at least not had surgery of the neck), here some surgical side effects to watch out for.

My “big” problem now is mouth weakness.  I was warned at the outset that because of the location of my tumor, (toward the back of my right cheek, about even with the bottom of my earlobe) there was a small chance that a nerve would be severed, a motor nerve that controls the side of the mouth, which would leave me with a droop at the corner.  Fortunately, this didn’t happen for the right neck surgery, but since the left neck surgery, there’s a motor deficit at the left corner of my mouth.  It’s not really a droop, and I haven’t asked a doctor what’s exactly wrong, but it involves the muscle that pulls my lower lip down away from the teeth, leaving me with a lopsided grin – sort of an anti-droop.  It also puts that part of my lip near the path of my upper and lower teeth during chewing, resulting in several good chomps to that that area.  This causes Leslye no end of amusement, so I kick her shins under the table to keep things even.  It was alarming at first to have the fatigue around my lips and the anti-droop because it causes me to stumble over words if I talk a long time.  These nerves may or may not grow back or they may grow back incorrectly.  So far, the people I mention this to have been kind enough to refrain from commenting on what a blessing this will be for them, but I read out loud to Leslye most nights for exercise, so I should be up to prattling speed shortly.

The neck surgeries also cut out some feeling in my neck and face.   Nerves were cut that provide a good deal of sensation to the right side of my face and ear, under the right side of my chin and neck, and upper right shoulder;  the numbness on the left side is limited to mostly under my chin.  I’ve gotten used to it, but for the longest time it felt like my shirt was unbuttoned and coming off my right arm.   I’ve also got a sore jaw.  I never expected this, but thinking about it, it makes sense: the surgeon cut through and around several neck muscles and I’m sure there’s an imbalance that’s going to cause problems for the untouched muscles that are used to having everyone pitch in for chewing duty.   

From what I understand, the nerves will eventually grow back.  Depending on where and what was severed, this can take anywhere from 6 weeks to two years.  For me, having the nerves grow back is the most irritating part.  After the initial pain of having the incision made, the nerves in that area that haven’t been damaged are actively reporting a surgical incision; this fades after a week or two.  After that, the nerves that have been cut or damaged have regenerated enough to start sending signals to my brain.  The signals are not necessarily correct, but they’re constant.  The formerly numb parts of my skin become sensitive to touch, making it uncomfortable to have anything (like clothing) brush against it.  This is quite often accompanied by random pricks, pinches, tingling and itches (that can’t be scratched!) that occur over the numb areas.  There have been several times where I’m sitting quietly in front of the computer or TV when suddenly I’ll exclaim “Ouch!” for no apparent reason.  There is a reason of course: somewhere, two nerves are growing closer and closer together when suddenly – snap! – a spark jumps between them right before they connect.  This is when I get pinched by a regenerating nerve (or so I like to imagine).  Pain killers don’t touch it, but for me, it’s more of a constant nuisance rather than debilitating condition.

Which brings me to the last complaint: fatigue.   From simply a physiological standpoint, surgery is stressful to your body and it takes a lot out your body’s energy to recuperate.  It usually takes between four and six weeks to get back on your feet fully after a major surgery.  Additionally, there’s the drain of getting used to all these new sensations, the drain of frustration from not being able to move the way you used to,  the drain of low-level but constant discomfort and the drain of stressing over everything mentioned above.  This last is also called “sick and tired of being sick and tired.”

Though I’m much better about it than before, being SATOBSAT is by far the worst part of this.  I’m not much for sitting of front of the TV and would much rather be actively recreating then passively vegetating.  When forced to take it easy, I start getting irritated (and irritating) about all the fun things I’d rather do but am too worn out for;  I’ve lost half my weekends to afternoon naps for the past month.  Exasperating?  Yes.  Necessary?  Yes.  Fortunately I’ve learned that the only way through this is to give in and sleep through it and observe that so far, the world seems to be staggering along just fine without me.

2/24/11 Update:

At my regularly scheduled dentist appointment, the dentist said that he didn't think that any nerves to my mouth were actually cut, just stretched.  This could account for the fact that even though my right neck surgery was more extensive than the left, it was the left side of my mouth that sustained damage.  He said that the affected nerves would probably repair themselves, though it could take up to two years. 

I'll let you know what happens in a couple of years.

One More Baby Step

Had my appointment with Dr. Nakka my oncologist yesterday, so now I'm ready to start getting treated for MCC – What’s that?  -- I need another operation?  --  Woo hoo!  That’s great!  I may sleep through this thing yet! 

Dr. Nakka says it’s best if I get a “port” put in (installed?) to facilitate the chemo treatments.   I’m not wild about going through the whole surgery routine again but even though I’m blessed with good veins that are easy to stick (the phlebotomists rave about them!), a port has its advantages.  The chemicals used for chemotherapy are caustic and can damage blood vessels making the vein used during a chemo cycle a one-time use vein; sooner or later you’ll run out of veins.  If for some reason the vein blows up during infusion, those same caustic chemicals will leak into or “infiltrate” the surrounding tissue* which will destroy the tissue and cause complications and pain when you’ve already got enough to worry about.

So it’s off to the surgeon I go to get what amounts to a stoppered drinking straw implanted in my chest.  It’s an outpatient procedure and I don’t think I’ll be put all the way asleep.  They’ll probably just drug me happy unless I start making undue complaints during the procedure (which has happened before).

A port (also called “portacath”) is a device that is implanted under the skin, usually just below the clavicle.  It’s basically a catheter (the drinking straw) and a septum (the stopper) that allows blood to be drawn and medicine to be administered without having to hunt around for suitable veins.  When installed, the catheter is inserted into the surgeon’s major vein of choice and the septum is routed to a spot on the chest under the skin.  That means that once the incision heals, you’re water tight and there’s much less chance for infection, and, except for those who have access to your bare chest, it’s not noticeable to the outside world.  The septum is a bulb of special self-sealing silicon** that can withstand hundreds of punctures, allowing the medical staff access to a guaranteed viable site.

When it’s time for a blood draw, the site is treated just like any other needle stick site except that it’s flushed with saline or an anticoagulant afterward to prevent blood clots from forming in the catheter.  For injections or long term infusions, it’s just like any other intravenous access – stick the needle in and drip, drip, drip.  There’s still a needle going through your skin, but after that it’s just like any other intravenous procedure and probably more durable too.

Dr. Nakka also said that depending on how well I tolerate this round of chemo and radiation (six weeks of each, concurrently), she may follow up with three more chemo sessions (without radiation) three weeks apart.  The second round will consist of the same drug used during this round, carboplatin, along with another drug, Etoposide.  She said that it's part of a trial which made me feel good -- no matter what happens to me, at least someone will be able to learn something from my adventures.

As usual, Leslye and I will wait for the surgery center to call and tell us where and when to show up. 

*  For  bonus points, say “cause extravasation of the chemicals into the tissue. ”

** Wasn’t that sibilant?  Alliteration is fun!

Radiation Simulation

Today I went in for the radiation simulation. This involved making a “mask” that will fit over my face and neck that will be bolted to the table during each radiation treatment. That will assure the doctor that my head will be in the same position each and every time. It's important to make sure my head is in the same orientation because my radiologist wants to make sure she's irradiating the same spots each time. There's a lot of stuff going on in and through your head and neck – arteries, nerves, muscles, glands – that shouldn't be irradiated. They're all very close to together and moving even a half centimeter means that something could get cooked that shouldn't. Not all radiation treatment requires a mask, usually just the head and neck regions.

My simulation took about an hour altogether and was even documented by Leslye. She's a dedicated Scrapbooker and I'm convinced she'd take pictures of dog poo if she thought she could get a scrapbook out of it.

The whole operation takes place on the bed of a CT scanner. The object of the game is to get a CT scan of the affected areas, then overlay the CT image with the MRI image I had previously. This will give her a very full picture of what's inside so that she can plan the radiation fields in order to maximize the radiation to the tumors and minimize the radiation to the innocent bystander tissue.

To start, the radiologist puts a special tape on me that has a single wire embedded in it. She molds the wire to follow the outline of my surgery scars; that way, the scars will show up on the CT image giving her a clear picture of where the tumor beds were before being removed.

I told the surgeon to go ahead and install zippers just in case.

For reasons I'm still not clear about, I had to grab some cables that pulled my shoulders down before the molding could begin. These cables were attached what I swear looked like bungee cords and were pulled tight so that they kept kept constant tension on my hands and arms which did indeed, pull my shoulders down.

Next comes the molding of the mask to my face. The mask starts out as a flat, perforated sheet of some kind of plastic that becomes malleable and clear when soaked in hot water.

I'll bet this is how the Pillsbury dough boy started.

After soaking in hot water, the hot, dripping mask is placed on my face and neck and gently smushed by the technician so that an impression is made. It's an uncomfortable and strange feeling at first; now I know what Bill Murry went through when he got slimed in Ghostbusters. It cools off shortly and stops feeling strange and then starts feeling just uncomfortable.

A new use for bubble wrap?

During the cooling part, you shouldn't move your head or your face, or else they'll have to slime you again. If you move, the mask stretches allowing your head to move which will throw off the accuracy of measurements. This proved difficult for me because I couldn't help but think about that old Sanford and Son quote “I'm calling you ugly, I could push your face in some dough and make gorilla cookies!” but I didn't start snickering or even crack a smile.

After about five minutes the plastic fully hardened and my head and neck were firmly immobilized. I couldn't nod my head, talk, grin, or even open my eyes. From here it's just a normal CT scan process except for the fact that you've got this rigid mask pressing against your face - and I mean pressing.. I can understand where the claustrophobic would feel a a wee bit stressed at this point.

The final product, shrink wrapped for your convenience.

The actual CT scan part took around 15–20 minutes, plus an extra 5 minutes or so for the computer to build the image.

After the image is generated, the radiologist looks at it and decides where to mark the mask in order to locate the radiation fields. In the days before this mask technique, if a radiologists needed to make a mark in order to aim the radiation, she would need to make a permanent mark on your skin in the form of a tattoo. Since the mask isn't going to let my head move and the mask will be bolted to the table in the same place, it's sufficient to simply mark the mask with locating marks.

Oh give me a clone, of my own flesh and bone...

This picture was  just too cool to leave out.

So now that the radiologist has a clear picture of the outside and inside of my head and neck, she'll go work planning radiation intensities and durations in order to kill any microscopic bits of Merkel Cell Carcinoma that the surgeon's knife may have missed. She says that it usually takes about a week to get things finalized and after consulting with the oncologist I should be looking at starting treatment in about 10 days.

The MRI: Noisy, and the Echo Nearly Killed Me.

Update 11/11/11 - wordsmithing, correct some typos and grammar. 

Today I finally had my MRI (Magnetic Reasonance Imaging) so the radiologist could get a picture of what's inside my head.  She needs this so she'll have an idea of how bright to make, and how to aim all those little radioactive flashlights I mentioned earlier in my explanation of IMRT (Intensity Modulated Radiation Therapy).

For those who have not had the pleasure of an MRI, here's what it was like for me: lying inside a large tube while jackhammers of various sizes and speeds are being tested on it from outside.  I have no doubt that the people at Siemens (the company that made this particular machine) know what they're doing, but it sounded like some serious metal on metal action was going on around me -- not what I usually associate with magnets -- that will require lots of maintenance down the road.  I believe this machine was one of the "open" MRI machines you hear advertised on TV, but from what I remember about the "closed" MRI I had about 12 years ago, there's not much difference.

MRI's are essentially a powerful main magnet, a radio frequency broadcaster, a radio antenna, and a few non-super gradient magnets hooked to a computer.  The main magnet has all sorts of super credentials like being super strong because it's made of super conducting wire because it's super cooled with super cold liquid helium with the whole lot being super expensive. Ebay has a used MRI trailer for $145,000, shipped freight, no returns. 

The theory of an MRI goes something like this: All of the atoms of your body are spinning in some quantum way that can be measured; in this case we're only worried about the spin of hydrogen atoms.  Like anything that spins, they wobble, much as the classic spinning top.  The vocabulary word you're looking for is precess.

The main magnet is so strong that it forces all the atoms to stop precessing (wobbling) and line up in a north-south fashion much like the iron filings in your second grade magnet experiment.  Nearly all of the atoms line up in pairs which lock them firmly in place, but like at any high school dance, there's always going to be some that won't (or can't) pair up.  The unpaired ones are still oriented north-south at the dance, they're just freer to move about the paired up atoms.

Once the atoms are lined up, a pulse of radio waves that are "tuned" to hydrogen (the Larmour frequency) is beamed at your body.  This causes the unpaired hydrogen atoms to shift a little bit to the side of the north-south orientation of the rest of the atoms.  When the pulse finishes, the hydrogen atoms snap back to their former north-south position, each giving off a tiny radio wave of its own; this happens hundreds of times each second.  These tiny radio transmissions are then picked up by the MRI antenna and sent to the computer for processing.  While all this tilt and snap business is going on, the non-super gradient magnets "shape" the magnetic field in order to let the machine take glances at different parts of your body.  It's the gradient magnets that are responsible for all the clattering and knocking racket going on around you. 

The computer takes all this, crunches its numbers to make sense of it all and draw a picture for you.

So much for the theory.  Since none of the previous explanation is going to get you through med school, you're probably here looking for practical advice.

If you're having an MRI done for the head and neck area, you'll probably be asked to come in early for a quick x-ray.  The main magnet is so strong that it's been known to pull keys out of pockets, pistols out of holsters (Really!), and demagnetize credit cards from across the room.  The reason for the x-ray is to check for metal filings that may have lodged in your eyes.  Nobody wants to do emergency eye surgery because a bit of metal tore through your cornea from the inside out.

You'll be asked to remove all metal from your person -- I have no idea what they do with folks who have piercings -- in order to avoid distortion of the image and flying metal.  If you've had previous surgeries, find out if any staples were used to repair the incision.  For instance, my 1979 surgery left metal staples in me that were not MRI safe and I had to forgo a renal MRI angiogram because the staples would have interfered with the MRI.  (I found this out about 15 minutes before I was about to climb into the machine, but the trip to the hospital wasn't a total loss thanks to my wife.)  Nowadays, surgical staples are MRI safe.

Don't wear clothes that have any metal on them.  I learned this the hard way at my PET scan and was forced to wear a fashionable hospital gown.

Once you're on the MRI table, you may have a "cage" placed around the part of your body that's being imaged.  The cage is made of metal and is designed to bring the imaged body part further into focus. When I had an ankle MRI a few years back, the tech placed what amounted to a huge bracelet around my ankle.  This time I had a sort of face mask placed over my face and neck for the dual purpose of focusing the MRI's energy on my face and neck and literally bolting my head to the table so that it couldn't move. 

Bring earplugs; the machines are incredibly noisy.  I forgot my earplugs, but the MRI tech kindly supplied me with some.  Not sure about music players and earphones, but if they're allowed, be careful of digital music players.  They may use magnetic storage in which case you'll lose all of your irreplaceable classic 70's and 80's rock that no one ever plays any more.  If it's Smooth Jazz, that's OK.