Here's what you're in for...


This is a chronicle of my experiences, observations, and feelings as I experience treatment for Merkel Cell Carcinoma (MCC). The goal is to give anyone going through chemotherapy and radiation for MCC (or any other cancer for that matter) an idea of what to expect. Of course I'm a unique individual just like everyone else, so what happens to me may or may not happen to you. Your mileage may vary.

I'm a pretty reserved guy, so most of these posts will be straightforward, just-the-facts-ma'am entries. I may occasionally get maudlin, but cut me some slack -- I could die from this.

Tuesday, March 29, 2011

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.

Tuesday, March 22, 2011

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

Monday, March 21, 2011

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.

Saturday, March 12, 2011

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.

Monday, March 07, 2011

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.