Emotions of a caretaker

I had no idea Paul's cancer would be so hard for me emotionally. I don't really understand it but it is very real. I don't DO much for Paul; he mostly sleeps and then wants to do for himself when awake. We haven't talked in about a month because he can't speak (neck radiation); we do communicate but it not the same. I find myself easily frustrated, to the point of tears. Right now I have tears flowing down my cheeks and they won't stop. I know it is "normal under the circumstances" but it's not normal for me. My mom has been down for the last week and she has been wonderful. She has prepared meals and weeded my overgrown flower garden. I wish she could stay another 2 weeks! People ask if there is anything they can do, but then don't help when I say I could use help with housework and getting my desk under control. This evening I just put everything on the desk on the floor so I could sit down and write out 2 overdue birthday cards to people I love dearly. Our 16 year old made dinner (every Sat. night) and every time he does it stresses me out due to his arrogance in the kitchen. He thinks he is his father and knows all about cooking. He doesn't, yet refuses to use a cookbook or take direction from me. "I know what I am doing." Paul will help him in the kitchen but he can't do that right now and I don't have the patience. Paul said he wanted to sleep through dinner and we let him be. I started this crying jag after I went to the dinner table and found the place settings 6"-8" from the edge of the table. Stupid right? But he has been taught correctly and was just being lazy about it. After 'words' I had them start without me so they would enjoy their meal. I went out to the porch and just cried. I remembered the power of writing and reaching out, that is why you are reading this. The tears have stopped and I feel a little better. I am thankful for this group and your support. A lot of you understand what we are going through.
Thanks for listening,
Leslye

Long Overdue Update

Paul is doing as well as can be expected, I guess. I don't think either of us are doing very well; Paul with his treatment and me with feeling helpless and worried about his health. Paul's last chemotherapy is TODAY! Unfortunately, he has 8 more doses of radiation and that is what is doing him in. Thursday the doctor canceled that day's radiation treatment and gave him a 4 day +weekend hiatus from radiation. He was overjoyed. He will restart on Weds. She stopped it due to his skin breaking down too much. Paul is unbelievably tired. I now lovingly call him a cat. He lost his voice the first week of treatment and now his throat and mouth are sore beyond belief; it is extremely painful to swallow, thus eat or drink. Thank you for all your thoughts and prayers. I never knew what a nightmare this would be. I don't think anyone can understand unless they have walked the path. Blessings, Leslye ps-cards from family and friends would raise our spirits.

He's Back.

In addition to life and work getting in the way of posting, I had the complication of a blood infection with high fever that put me in the hospital for five days.  I'm back at home now, cooler and weaker.

In spite of feeling miserable for the couple of days, it was a pretty pleasant stay.  The nursing staff at LRMC is phenomenal - professional, friendly, polite, knowledgeable and patient.  All the attention made me feel like I was staying a special hospital themed resort.

Here are some things I learned:

• In addition to the phone, your IV pump has a higher chance of going off when you're in the shower.

• Don't stop breathing when a doctor or nurse places a stethoscope on your back.  In spite of what we learned with our toy stethoscopes in kindergarten, they can be used to listen to anything inside your body, not just your heart.  Learned this when a nurse mentioned how much it irritated her when people stopped breathing when she put a stethoscope on their back

• Hospital gowns can be comfortable and if tied properly, discreet.

Update on Paul through a wife's eyes

I have never felt so helpless.
The beginning of last week (Paul's 2nd week of chemo & radiation) he started to lose his voice and soon after his throat became horribly sore due to the daily bilateral neck radiation. His throat pain makes it very difficult to eat which breaks my heart.
Paul enjoys the flavors and textures of foods; he loves to taste and identify all the different flavors in his meals. It is like a challenge to him. His increasingly sore throat and tender mouth make it excruciatingly painful to eat. He is forced to eat very slowly and have foods at neutral temperatures. No more piping hot or spicy foods, his preferences. These joys have been taken from him.
After sitting down with 3 cookbooks for cancer patients at Books A Million, I choose and recommend "Eating Well Through Cancer" by Holly Clegg & Gerald Miletello,MD. I quickly found out Paul doesn't care for the thickness/texture of smoothies. (I'll look for other recipes on the net)
I feel helpless because I feel like I can't cook meals/snacks he can easily eat and get energy from; I can't make his throat and mouth feel better (of course he is doing everything the drs. tell him to), I can't give him energy so he can stay awake and live his life.

Okay! Off pity pot!
I love Paul more than ever and we are in this fight together. I love the Lord and know that He is in this fight as well, healing Paul. I am doing everything I can to take care of my husband and I spend all the time I can with him, even when he is napping. I now have a list of support groups and will join one next time they meet in April. I need to listen to and believe Paul when he tells me I am doing a great job.
I just wish I could cure him...but I am not God.
Thank you for all you thoughts and prayers,
Leslye

3 down, 3 to go

...though you wouldn't know it from the posting action going on.

Had my third chemo, 11th RT treatment today.

Been busy trying to figure out how to work my updates into work, sleep, life, sleep, play, sleep and extra sleep because of the chemo.  I AM keeping daily track of what's going on in the daily log, just not publishing it.  Will hopefully have enough energy to post something more substantial tomorrow night, but yeah, I'm still here, just not real verbose.

One Down, Five To Go

This here being a Saturday marks my first week of Radiation Therapy, and so far, I'm winning.  Chemothearapy got the better of me on Thursday, but at least I've got a better idea about how this whole chemo nausea stuff works.

One thing I've learned is that I'm not different --chemo will make me sick just like everyone else.  If you're reading this before you start a course of chemotherapy, know this - unless you're blessed with an alien's digestive system, you will get sick.

It's the sneakiness of the process that got me so cocky.  After my first infusion, I felt terrific, ready to take on Charlie Sheen, tiger blood and all.  Part of it was probably just the relief of finally getting this part of the treatment started, but part of it was because of the other drugs administered with the chemo, one of which is an anti nausea medicine.  I recieved nothing in the way of anti nausea after that, so I was basically an overconfident kid waiting to be taken down.

In a way, it's a good thing I got sick.  It means the chemo is doing what it's supposed to, killing quickly dividing cells like cancer and the lining of your digestive tract.  It's one of those No Pain, No Gain moments.

Looking over to the right, you'll notice a link to a new page, one that actually means something.  I'm going to try to keep a (I hope terse) daily log of what's happening, so that others who haven't had the benefit of this type of chemically enhanced living will be forwarned.

Better Living Through Chemistry and Radiation

Today is the big day, start of treatment!  I am now officially under the influence of radiation and drugs -- so my writing may reflect that fact.  After carefully checking my person for ants, spiders, gila monsters, leeches, moths, snakes, crabs, praying manitses, octopi, blobs, and anything I may have picked up from outer space, I headed off to my first treatment. 

What?  You think I’m going to chance irradiating something that could turn giant and terrorize Central Florida?

The chemotherapy came first.  Chemo's job in my case is to make the MCC cells more radiosensitive, so it had to be in my system before any radiation could take place.  I find it ironic that at 18, I was hooked up to a dialysis machine to take poison out of me, and here I am 30 years later, going to be hooked up to a machine that will put poison into me.

The first order of business was connecting me up to the IV equipment through my week-old port.  It was still fairly sensitive but not nearly as sensitive as last week.  When the nurse put the needle in, it felt like any other needle stick I've had with the exception of feeling a definite "pop" as the needle pierced septum of the port.  I'm not trying to make anyone squeamish, just trying to let you know that in the long run, a port is a Good Thing and it doesn't hurt any more or less than a regular needle stick.

Each time I get chemo, I have to have labs beforehand so the doctors and nurses will have an idea of how my body is responding.  They're mainly interested in how my white blood cell (WBC) count is doing so that if it gets too low they can counteract it.  They're also keeping a close watch on my kidney function since I have a kidney transplant.  This is worth mentioning only because this time, the blood was drawn through the port - the dirty work had already been by the needle in the port, so no new sticks!

The next step was pre-medicating me with a couple of drugs, one to prevent nausea, and another similar to a steroid that would help prevent adverse reactions like swelling or rashes.  This took about 15 minutes to infuse and I didn't notice any side effects or unusual sensations other than feeling the cooler medication flowing into my warmer veins.  It's not painful, but can feel kind of creepy if you've never had an infusion before.  The nurse mentioned that the anti-nausea drug sometimes "makes people antsy, like they need to clean out the garage in the middle of the night."  Sounds more like "gumption" to me; if it makes me feel like getting onerous chores out of the way, I'll count it as a positive side effect.

After the pre-med, I was started on the main course -- carboplatin.  This is the drug that will make the radiation more effective and to a lesser extent, interrupt cell division of the MCC.  Once I was started and stabilized on the drip, I was booted out of the chemo department and sent over to radiology for my IMRT, pushing my IV stand ahead of me. One thing that struck me on the way over is how everyone moves out of your way when you're pushing IV bags and pumps around.

The IMRT was essentially the same as my Radiation Simulation, except shorter.  I took off my shirt and the mask that was previously made during Radiation Simulation was placed over my head and shoulders and bolted to the table.  The mask did it's job admirably by making my head and face completely immobile, even pressing down on my chest a little bit making me aware of my chest rising and falling as I breathed.  I'm not claustrophobic, but lying immobilized on a cold table in a chilly room, unable to speak, and aware of every breath can be stress inducing.

During the process of the radiation techs double checking the measurements made earlier, Tiffany, one of the radiation techs, kept up a running commentary about what was happening around me which was very comforting.  The radiation field placements are very finely tuned, down to the millimeter and took about 15 minutes.  There are machines now so precise that for chest and lung treatments, the radiation is timed to your breathing so that your lungs and chest are irradiated only at certain points of your respiration when they are at the same spot as your previous breath.  It's that precise.

The mask is so snug on my face that I can't even open my eyes fully and even then, what I see is the ceiling through plastic mesh.  It hightened other senses making me notice things I probably wouldn't have, such as how the pitch of the whirring motors sound like a major third, how the sound moved around me while the machine moved, the smell of the magic marker they used on the mask in order to calibrate the machine to my position, and a quick, sharp scent of ozone (I think) as the machine cranked up to produce radiation.

By the way, there are no radioactive materials in the machine.  The radiation is produced by a liniar accelerator (or "linac" as the pros know it) which is under complete control of the technician.  That's all I can tell you about it as we had only discovered four elements (chocolate, duct tape, WD-40, french fries) when I was in high school.

After the techs left the room for a second time the actual radiation treatment commenced.  It wasn't much different from the calibration a few minutes ago except that there were a few extra hums and the knowledge that this time, real live radiation was being aimed at my head.

Even though it's been explained to me a dozen times that radiation is colorless, oderless, tastless, invisible, and can't be felt, I knew I could feel pinpricks on my skin and a funny feeling inside my brain, the same way you know that your line in the grocery store is moving slower than the rest or that your computer hates you and erased your file right before you had a chance to save it.  At one point, I swear I saw a flash of blue light even though my eyes were closed.  Going to mention this tomorrow to see if my optic nerves are getting cooked.

After about 15 minutes of forced introspection, the techs came into the room to release me.  There was something special for the staff going on right after my treatment, so there was very little time to answer my questions and I was punted back (in a nice way!) to the chemo department again.  The carboplatin infusion had finished during RT so all that remained was to disconnect the IV and flush the port.  I was given an appointment for next week's infusion and presciptions for labs to be drawn for next time, and I was on my way.

Right after I got out the door I took stock of myself:  I hadn't thrown up, I was able to walk, I wasn't fatigued, and felt as "normal" as I had ever had.  I also had a disquieting feeling that there were cells in me that were rapidly dying at a much faster pace than normal and my insides were getting cluttered with dead cell detritus.  I didn't really feel any effects until about 20 minutes later driving home, a slightly nauseated feeling, but certainly not a dire feeling that I was about to blow grits.

As of now about seven hours after my first treatment, the only thing I've noticed is a slighty "wired" feeling that's unusual for me to have at this hour and a slight headache.  It feels like I've had too much coffee.  Funny thing though, the chemo nurse said it's the anti nausea medicene that can cause the jitters and give you insomnia; I may not be feeling anything from the chemo.  It could be from caffine withdrawal (only one cup today) or the fact that spring time (yes, spring starts in MARCH in Florida) causes all sorts of stuff to bloom that bothers my sinuses.

There's still tomorrow though.  It will be an interesting day.

(It's late, I'll fix the grammar and typos tomorrow.  Bear with me.)

Update 3/8/11:

Fix typos, introduce new ones, wordsmithing, more detail about RT.

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.

And Now, I'm Finally Awake!

I don't know what the big deal about Vicodin is, but for me, it's not "all that".  Makes me groggy and dopey(er) for about 24 hours after I take one.  It may kill pain, but it kills any kind of decent functioning too.

As Leslye reported earlier, I'm through it after about a day and a half of sleeping.  I didn't out-sleep the cats, but I worked on it.  The worst I have to report is a soreness underneath the left side of my mouth, the inability to open my mouth wide enough to take big bites of food and a sore throat from the tracheal tube used during the surgery.  As I've been doing a lot of comfort eating lately, this may work to my advantage.

It occured to me that there may be people out there who have never had surgery.  By surgery, I mean the going to sleep kind, not the stuff they perform in doctor's offices.  In keeping with the educational nature of this blog, here's what I went through.  All you first timers, pay attention!

First off - no eating before hand - usually 8-12 hours before.  Surgery is usually scheduled early in the morning, so this doesn't pose much of a problem except to coffee drinkers.  If you take medicine in the morning you're allowed to take it with a "small sip" of water.  I usually cheat and go for at least one big gulp, and so far no problems.  The reason?  Some people are made nauseous by the anesthesia and the operating room staff doesn't want to clean up after you any more than necessary.  You also stand a good chance of inhaling (aspirating) the contents of your stomach during surgery should you get sick, and that's not good.

Once you arrive for surgery, you'll be questioned at least 1000 times for your name and birthday.  Bear with it, it's for your own good.  You're probably not the only one at the hospital getting surgery that day, so everyone there wants to make very sure that they're doing the correct procedure on the correct person.

DO NOT let anyone write on you except the surgeon.  This was a new one for me.  Leslye decided to inject a little humor into the situation by writing something like "no step" or "other side" or "not here" with a purple marker over the scar on my right neck from the last surgery (this one was for my left neck).  I thought it was funny too, but nurse's eyes got big as dinner plates when she spied the graffiti.  She wanted it scrubbed off right away because she said the surgeons are supposed to ink out where they're going to cut and initial it; everyone there is trained to look for the purple ink and she didn't want any confusion over what was being done.

Next, you'll get a visit from the anesthesiologist who will of course: ask for your name and birthday.  They usually ask what your weight is (Don't lie!  It's written down somewhere!) and if you've eaten anything.  They'll tell you about how long you're going to be out and warn you about the tracheal tube.

The tracheal tube ("trach", sounds like "trayk") is a tube put into your throat and partway into your lungs to make sure your lungs are exchanging carbon dioxide and oxygen the way they should.  During anesthesia, you're so "asleep" that your breathing is very shallow, usually not even enough to move the air all the way out of your windpipe; so left on your own, you'd simply be moving the same air up and down inside your windpipe.  The trach takes up the slack by pumping the volume of air in and out of your lungs that would normally be moved by your now soporific diaphragm. It's also a delivery system for anesthesia gasses and medicene.

They'll tell you that the trach is uncomfortable if you're awake enough to be aware of it and if you feel it, don't panic -- you are getting enough air.  I can vouch for both parts of that statement.  Once I felt it going down my throat right before the lights when out.  I thought "Huh.  They're right.  It is uncomfortable."  Then I was out.  Another time I was waking up and felt this THING in my throat and thought "This must be the trach.  It sure is uncomfortable."  Then I fell back asleep and woke up later without it.

You'll almost certainly wake up with a dry mouth and a sore throat.  The sore throat is from the trach scrubbing up and down your throat, the dry mouth is from something they give you to dry up your mucus membranes.  Dry membranes help keep your airways from clogging up and helps prevent pnuemonia.  I'm convinced that amongst the team of people keeping you alive at this point is someone who's sole job is to keep you supplied with ice chips.  You're still too sleepy to actually drink anything, but you'll be offered ice chips, and at this point in your life, there is nothing better than having a piece of cool ice placed in your dry mouth.  Don't pass it up.

One thing the anesthesist usually does in his or her job is administer a drug that causes short term amnesia.  This is supposed to help blunt the trauma of major surgery, but it's also a source of merriment for your spouse.  For instance, I remember only bits and pieces of my recovery and drive home, and don't remember walking inside my house, talking to my mother, and going to bed, though I've been assured these things happened.  My first clear memory is that of being offered a glass of something to drink later that evening.
 
You may come home with a fairly recent innovation (at least to me), a "JP drain" or "Jackson-Pratt drain".  This is a small bulb about the size of an egg made of silicone-like material with a small tube connected and a small drain port.  The other end of the tube is buried inside you near the point of surgery draining fluids away from your wound into the bulb.  Back in the olden days, drainage was accomplished by letting the fluids seep out of the incision onto the bandage covering the wound, necessitating a change of bandages at least once each day.  The JP drain works by squeezing, then capping the bulb causing a gentle suction on the tube.  This causes some of your precious bodily fluids (that you don't need any more) to drain into the bulb for emptying later.  To empty, simply uncap the drain port and squeeze the contents into a cup.  Squeeze the air out of the bulb, cap the drain port, and you're ready to collect some more fluid.  Nothing about having the JP or emptying the JP hurts, it's just annoying and a little creepy having this tube and bulb literally hanging off of you until the doctor removes it.

My next step is to wait for healing.  I originally heard from the radiologist that she doesn't start RT until four weeks after surgery.  This is because radiation effectively stops any healing and she wants to make sure her patients are healed before going about the business of destroying tissue.  In my case, it may be sooner, maybe as soon as two weeks post surgery since (I've been told by professionals!) that "I'm young" and that "I heal well".  Next appiontment is about two weeks from now, so we'll see what the doctor has to say.

Paul's Surgery Report

Posted by my wife, Leslye:

For those of you on pins and needles waiting for a 'Paul update' here it is. He is fine, as we all knew he would be. The doctor, who is very closed lipped, said Paul went through with flying colors and the dr. got the lymph nodes in the area.
Paul made me laugh as he was coming back around to reality. I have never seen him so 'intoxicated' because he doesn't drink. He repeated questions, had the funny voice and kind of swayed when standing up to finish dressing. It was funny and safe. The only 'bad' thing was reminding him to take deep breaths to get his oxygen level back up.
He slept all the way home as I knew he would (1 hour) and was funny groogy the rest of the night. He conceded to taking a half a pain pill and spent the night waking us both up. He would ask if he was keeping me up, I would say no and snuggle in closer to him. I love my husband!

Exactly What's Going On Here?

It's official: I go in for surgery next Tuesday to remove the little spot under my left chin that the PET scan picked up and the FNA confirmed as MCC.

Dr. Guerrier, the radiologist, doesn't want to start radiation until four weeks afterwards to make sure I'm well healed, so that means I'm looking at the end of February (the 22nd to be exact) before I can start any treatment aimed at eradicating this stuff as opposed to picking off chunks that are visible to the naked eye.

It's aggravating, sure, but overall I'm glad it was caught before RT and chemo began.  Resection is still the best way to treat this cancer and it would a hundred times as disappointing to go through everything, be "disease free" for a few months, then wake up with a lump under my chin one morning.

So in the surgeon's office this morning, he reviewed the CD of my PET scan images.  And kept reviewing them.  And kept reviewing them.  Then he jumped up to palpitate my left neck and under my mouth, then looked at me almost consternated!  It's as if he didn't believe that there was a pea-sized bit of death hiding under my teeth.  He had reason to be confused: he couldn't feel anything like a swollen lymph node in my neck.   I had to show him on the computer screen where the tumor was!

The only reason I knew where it was, was because Dr. Gueirrer had shown me, and the only reason she knew was because someone who does nothing but look at PET scans all day had shown her.   Dr. Reintgen acknowledged that the bright spot I pointed at must be the MCC, but the only way he knew for sure was because of the FNA report.

My surgeon certainly isn't incompetent and neither are your doctors.  This is just an example of how difficult it is to practice medicine.  It's a wonder that anyone wants to become a doctor at all given how many variables and variations humans and diseases come in.  That's why I'm suspicious of medical "miracles" where someone is suddenly "cured" of a disease.  I think has less to do with miraculousness and more to do with the fact the we just didn't have it right in the first place. 

The more I get involved with this, the more I'm amazed at how imprecise medicine is!  I, along with everyone else, demand 100% surety from my doctor and his tools but that's just not reasonable.  After reading doctors' notes, lab reports, pathology reports and such, I noticed they all couch their results in language that seems to avoid responsibility.  Words like "suspicious for", "indicates that", "presents as", and "consistent with" -- these are not terms that inspire confidence in me.  Avoiding responsibility has nothing to do with it of course; it's that the human body is so incredibly complex, it's impossible to know exactly what goes on inside of it.  The best we can do is divine an approximation of what's happening with our crude tools and acknowledge that approximation with precise, imprecise words.
 
This has been one of the most frustrating parts of this disease.  I can tolerate some uncertainty and generalities in many parts of my life, but it's wearying in this aspect where the stakes so high.

Here's What Ruined Our Day Yesterday

In spite of what these pictures mean, I'm delighted to be able to post them.  It warms the inner geek in me that I've achieved what the average 11-year old can do anymore.

These pictures are the part of my PET scan that have caused me, Leslye and my doctors so much consternation the last couple of weeks.  Here's how you view them:  Pretend I'm lying on my back in front of you, with my feet closest to you.  You're at a vantage point that will allow you to look directly into my nostrils (sorry) and the underside of my chin(s).  My chin is pointing to the top of the picture, the back of my head is at the bottom.

The picture below is PET image of my soft tissue that has taken up the radioactive tracer.  Any decent Wikipedia article will tell you how a PET scan works, here it's important only to know that bright spots mean that lots of tracer has been absorbed.  Things that absorb tracer are hungry things like brains, livers and tumors.

Doesn't my chin and jaw line look like a shmoo from behind?

Notice the brighter fuzziness just underneath the outline of my chin and jaw; these are soft tissues that have accumulated the radioactive tracer.  I actually have no idea of what it represents, save that it's normal tissue that didn't bother my doctor.  This constellation of cotton balls is normal enough except for the one lone cotton ball above the group at about the 1:00 position, closest to my chin.  During my FNA this cotton ball was the target of the needle wielding doctor.

The picture below is the same PET picture, but overlaid with a CT scan which in this case is designed to pick up harder materials like bones.Here, the bright spots are a combination of tracer uptake and bones.

Now it looks like Dumbledore from the front, reading
a book or playing with a Slinky.

That stray cotton ball signals danger in at least a three of ways.  For one, it's hungry in a way that lymph nodes shouldn't be.  Second, it's out there all by it's lonesome, not at all where a doctor would expect it to be.  Third, there's only one of them.  Most organisms including the human body exhibit bilateral symmetry, which for we biology dropouts means that if you folded us in half along a line, both sides would match up.  In the human body that line runs down the center of your nose down and across your belly button down to the ground.

Bilateral symmetry is very important to doctors because anything not symmetrical is usually trouble.  If there had been another cotton ball about the same size at about 11:00, my doctor may not have worried as much but the fact that there was a hungry something, in an unexpected place, without a mirror image sibling, was cause for concern.

I've always been a fan of non-invasive technology -- anything that helps me avoid pain gets my vote.  Before PET and MRI and the like, doctors were pretty much limited to x-rays and "exploratory surgery". (when's the last time you heard that term?); now a lot of diagnostic work can be done by electrons, neutrinos and magic.  It's ironic that non-invasive technology can lead to invasive surgery.

Anything Worth Doing Is Worth Doing Well

Today I got the details from the Dreaded Biopsy.  The good news: PET scans are indeed worthwhile for detecting cancer.  The Bad news: it detected more of it in me -- just a little more, but in this game that's like being a little pregnant.  The PET detected a previously unknown met of MCC in my left neck that the biopsy subsequently confirmed.  I'm a little confused about exactly what was confirmed, but the oncologist, radiologist and surgeon are all in agreement: more surgery is required.

When Dr. Nakka announced that the biopsy revealed more MCC in my left neck, Leslye took it much harder than I did and started crying after an angry outburst of "How dare it!".  Me, having been hardened by the sudden loss of my first kidney at 17, and being a testosterone numbed manly man, had short bursts of feelings lasting about half a second each in this order:

• "Damn!"
• "Uh oh, this could really be serious -- I could die from this."
• "I can't die from this!"
• "This isn't fair!"
• "Oh brother, more surgery."
• "I'm never going to get ahead of this stuff!"  
• "Am I going to die of this soon?"

then finally a (resigned?) "Well, better to find out about it now rather than later."

I tried to sooth Leslye by saying something stupid (which most men do when women are crying), and said "I'm sorry".  We both knew I had nothing to be sorry about, but it's a phrase that has stopped tears before and was about the only thing I could think of.

Dr. Nakka had already talked with the surgeon.  She suggested I call his direct line right after our appointment on the off chance that he could see me today.  This ratcheted up the worry factor a little because it seemed to me that there was a little more concern about my situation than before.  Nobody said anything, and I didn't ask so I can't be sure, but suggesting to a patient that he consult with a surgeon immediately following bad news conveys a certain urgency, no?

So now I have an appointment this Thursday with Dr. Reintgen.  He's operated on me before, recently even, so the appointment probably won't last very long, probably only long enough for a short explanation of what he'll do and when after he looks at the PET scan.  He does clinics on Thursdays and surgeries on Tuesdays so I'm shooting for surgery next week on Tuesday.

Whatever the surgery date, it will push chemo and radiation back.  Dr. Nakka says she doesn't like to do chemo until six weeks after surgery, but said that she'd probably start mine after two weeks.  I can't help but think this may compromise my treatment, but maybe waiting a full six weeks will allow another met to take root; it's a balancing act that I certainly am not qualified to manage, nor do I want to.  Just speculation here, but it's probably because chemo is so hard on a body, that it's protocol to wait until the body has a chance to recover from surgery.

For those of you who stumbled on this blog after recently being diagnosed with cancer, get used to the fact that nothing about this disease, or any other major disease, is set in stone and it can change in an instant.  It really takes a "One Day At A Time"  attitude to not go completely nuts.  The most aggravating part for me?  Not being able to plan.  I'm not a slave to the calendar or clock, but for pity's sake! -- I'm getting tired of having my life and plans jerked around at a moment's notice, and it's very tiring sitting in doctor's offices and awakening from anesthesia.

One Moment Please

I know I said that my FNA biopsy results would be ready on Wednesday, and that's what I thought, but...

The radiologist lady (Dr. Guerrier) is on vacation until Monday and because she needs to render an official medical doctor type opinion on what the pathologist saw, her office won't release the results to me until after.

A few people have expressed concern about "how stressful this must be for you."  It's a little irritating, sure, but knowing today isn't going to make me live any longer or shorter, so why fuss?  I'm busy with my church's annual chili cook-off anyway and any possible bad news would ruin my concentration on winning this year.

Apathy my friends.  Apathy is the key to serenity.

Thoughts From A "Long Suffering Wife" or A Wife's Viewpoint

Today's post is by my wife, Leslye:

 

I am Leslye, Paul’s wife of 19 years this April.  I think it is great he is writing this blog and I sometimes gain insight from it. 

I have always known him as a kidney transplant recipient and I understood his need for medicine, blood work and doctor visits 4 times a year.  It wasn’t’ until around the 4^th skin cancer biopsy and/or removal that I started to realize I was going to be losing him biopsy bit by excision bit.  I didn’t like it but what could I do?  Sometimes I would wish he wasn’t quite so diligent and not always have something open and bloody.  Plus the pain of the freezing…I don’t know how he does it.  There finally came a time I just got mad at his suppressed immune system that was allowing these stupid Squamous and Basal cell cancers to continually invade his body-my body that I loved to stroke.  He always seemed to be going to the dermatologist/ARNP; I know we bought him a boat or two. I am now eternally thankful to the ARNP for doing the shave biopsy that showed MCC.

I guess I put too much faith in medical science. The worse part of Paul losing his kidney was watching him ‘wind down’ like a wind-up toy.  It was frustrating because everyone knew Paul would need a transplant and his brother was a perfect match.  Need kidney, have one, put it in, get on with life.  For whatever reason, they had to let the old one run its course and we all suffered by watching him get sicker and able to do less.  *Stupid*. Because of my faith in medicine I never gave thought to idea that he could reject the kidney.  I knew everything would be fine, it was and continues to be. 

Ten years ago I never gave “the Big C” (my dad’s term) any thought.  It did not affect my life.  Then my [step] grandfather was diagnosed with lung cancer and died within a few months.  I never got to say goodbye.  I hated cancer because it had so quickly taken away my grandfather.  Five years ago, his son, my [step] uncle was diagnosed with advanced lung cancer.  HE WAS IN HIS MID 40s!  Roger immediately quit smoking (big duh there) and did *everything* he was told to do and then some to prolong his life.  He even participated in a study or two.  Nothing would stop the spread of cancer and he died almost 2 years later to the day of diagnosis at the age of 47.  I HATE CANCER!!  Cancer doesn’t care who you are or what you do to stop it.  It just keeps growing.

The thought that this MCC may take my husband’s life enrages me.  And it scares me to death.  Really scares me…a lot.  

I know that life is not fair but damned it, this is not fair!  Paul has been through so much: his kidney health scares, our ‘high maintenance’ kids (16 & 18 now), skin cancers and now this *%#)*@! MCC comes from out of nowhere.  One of the things that makes me mad is that it had the nerve to grow over a scar from yet another BS or SC. How dare it!

So here we are 2 months after hearing the term Merkel Cell Carcinoma.  You have read what Paul has gone though and I am with him every step of the way.  I find myself slipping and saying ‘we’ have an appointment when it is really Paul who has the appointment.  I go with him for moral support, to be a second set of ears and note taker and be in the background.  That last one is a challenge for me because I am a take charge type of person.  I have to remind myself that I am with Paul during appointments and procedures for HIM, not my need to know everything.  2011 is all about my husband Paul, his needs and his BEATING this cancer.
 

I am a better wife now.  I am less self centered, less demanding of our 16 yr old, and try to be much more aware of Paul’s needs. I kiss him every opportunity I get and tell him I love him more often than when one of us leaves the house.  I now go to bed when he does and we snuggle in bed for an hour on Saturday mornings.  I want to give him the best care, support, nurturing and love he needs to get through the upcoming treatment.  

The thing I hate more than anything, cancer, has made me a better person and wife.   I am not going to lose my husband to it without a heck of a fight.