Worse Than a Bad Relative

This was taken a couple weeks after I first started chemo and before I started to melt like the witch in the Wizard of Oz. My kitty companion nurse couldn’t answer the phone or the door but she sure could lay down some stinky farts. This recliner I'm sitting in has been both my hangout spot and my bed since the beginning.

     After my first post about dealing with the scary C word for most of this year I wasn’t sure if I wanted to pen another one. After giving it some thought I decided to go ahead and do it. Back at the beginning before my hands started to be uncooperative and I felt like a double order of dog shit and biscuits 24/7 I started a journal over this bout with lung cancer.  


This experience has monopolized my thoughts and my days since February and as much as I had no desire to stay stuck in what many perceive as a negative it sure has been a learning experience. Those opportunities I've heard and often them called myself by the acronym  A.F.G.O, aka, Another F***ing Growth Opportunity. It sure has been. I figured tossing some pictures in the mix wouldn’t hurt either. I also have a request I’ll save to the end. For better or worse here we go.

Never too far from me

    

     When I looked back a few months before my diagnosis I can see how things evolved. I felt something may have been wrong for a while since I felt so lousy and run down on a regular basis for months before I landed in the ER. I considered getting an MRI for the pain in my shoulder a couple times since that had been a constant issue. Even with insurance the outright ridiculous cost made it easier to put off. I figured I'd pinched a nerve in my arm or something because the pain, the tingling or both would disappear from time to time.  


     The MRI on 2/5/16 found a mass about the size of a billiard ball. It was in my upper left lung and pressing on my throat and spine. A PET scan a couple weeks showed how lucky I am since it was all localized and hadn't spread to my lymph nodes. Even after I told the Doctor what had been going on he said there was no way of knowing how long it had been growing. I’ve never asked the doc for a prognosis though I know from my research that the numbers for Stage lllA adenocarcinoma suck. I decided early on, “Nope, we aren’t having this shit in my house”; it would be worse than the relative who drinks all your booze then leaves a mess in your bathroom. You know sooner or later they would eventually have to leave. I planned on making this turn out the same way.

     You sure need to keep your sense of humor because cancer will definitely try to steal your dignity. The daily task is not only keeping your chin up but also trying to find some humor in whatever form it takes. We've for sure had more than an abundant share of our own laugh out loud moments. Humor is definitely a port in a storm during an experience like this. You have to keep your mind turned to the good around you though not be afraid to yell Foul! when you need to.

Yes Virginia there was a chin under under all that fur. My Mrs. had never seen my chin, it took her a bit of getting used to. I had to shave my face for the last 18 radiation treatments. The reason for that shows up below. This was taken after round 3 of chemo about halfway through radiation.

            First the hair had to go, it wore me out moving it out of the way to eat and what not.Tying it back became too uncomfortable.

Then I had to get rid of the French Connection from my chin to my ears. Shaving with a blade became too difficult when I couldn't bend back to see my neck.  Getting used to an electric razor has been interesting endeavor.

Mom and Dad came from upstate NY to visit for a weekend a few weeks after radiation ended. It was such a seriously big boost to both our spirits that words just really can't  express.  Thanks and Love to you both.

These are, as I called them, my Radiation Kids . They had to talk me down off the ceiling that last week. I was so done with getting filled with poison and being zapped by lasers at that point. I had already graduated to my Doctor Who suspenders weeks before this was taken since my belt didn't have enough holes to hold up my pants.

This is the reason for the shave. I named it my Count of Monte Cristo mask.  My Mrs. wasn't a big fan since she knew how tough the last rounds of radiation was on me. The black buttons snapped onto the table and held this sucker right against my face so I couldn't move my head while I was broiled with lasers. It's stuck in a closet waiting for an indecent burial. The candy was a surprise for sure from my Radiation Kids  and I was surprised when they told me it wasn't something they often did. I figured I must have received the World's Worst Patient Award; my lovely wife Dani will attest to that moniker.

About 2 months after radiation and chemo ended and I finally started to put back on some of the weight I lost.

This is what a gallon of Magic Mouthwash(real name for it) looks like. This stuff is pretty much a life saver if you can't swallow without a lot of pain. Take it from me, don't think more is better, it is not. I made that mistake only once and was numb all the way to my stomach. What a thoroughly strange feeling.

     

     There are a couple of things left I feel the need to mention and one comes in the form of a request. If you have a persistent feeling something doesn't seem quite right about you go to the damn doctor that's what they're for. You are your best advocate. If you have questions, ask. Write your questions down prior to any doctor visits or tests. It makes those questions easier to keep track of since it is quite easy to get distracted by all the machinations you're put through during the process. The doctors and nurses will get tired of questions. Tough, there are much worse things then being the World's Worst Patient if it keeps you alive. If something doesn't seem right or changes in midstream verify what is going on. Everyone may be nice and appear helpful though incompetence too can have a smiling face.The Magic Mouthwash above was suggested by another former cancer patient and we had to ask for it since it wasn't suggested as an option. When you're being told you need to eat but everything tastes like black pepper or dirt nothing is very appetizing. If it also hurts like hell to swallow, food becomes another thing to fight through so make yourself more comfortable. This stuff is liquid gold and comes in different mixtures for different conditions.

     One of the things I've had to force myself to get accustomed to is I can't just bounce around the stores at this juncture. Out of necessity I've become one of those cart people that get in your way at the grocery store. Even now I'm pretty sure I can drive a car better than I can one of those. I now have somewhat of a deeper appreciation for what it's like to get around on wheels at least part time. Tooling around a store on one of these jokers is often not a lot of fun since they are generally not maintained worth a crap. Often found rickety is the phrase I would use. Still there are moments when it can be fun; like after you knock over an entire rack of shirts at Walmart. 

As a final request please be mindful of those folks in the carts since I could be one of them. The toes you save may be your own. 

Thanks for stopping by. Comments and shares are appreciated.

From the desk of  Greg Davis, thanks.

I Hope You Got a Better Birthday Present

     This post has been probably the most difficult one to write of any that I’ve posted here. It has taken me the better part of a year to finally just put it out there. It was not because I was planning to rewrite War & Peace or something ridiculous like that. Even now sitting here tapping out some edits of these words I find myself hesitating to continue.

     Why so hard you ask? Well, there are a couple of reasons behind that and they are interconnected I’d have to say. I can’t say with any conviction which one carries more weight than the other though that can and has changed from day to day over the past 8 months. Anyone that knows me or has over a long stretch of time and thankfully there are still a good few of them around, knows I’ve been known to keep stuff to myself. The other is there have been many days I wasn’t up to it. Actually there were quite a few of those days and contact of any kind was too much to handle at that juncture.

     Back in February on my birthday my intended Facebook status for the day was coming to the conclusion that as the calendar page changes and the days roll into years the only thing anyone truly wants for their birthday is another one. Within a few days I wasn't sure I'd be able to fulfill that desire.

     Before I was able to actually update my status that day I couldn’t breathe. I couldn’t catch a breath and was gulping air like the goldfish that jumped from his bowl to the counter. Needless to say I scared the living crap out of my lovely wife when I woke her from a dead sleep to call 911.

     So off to the ER at the nearest hospital I went to endure what passes for emergency medicine for the next 8 hours or so. After blood work, a chest x-ray and some pain meds they decided to keep me for observation.

     That night I saw a parade of doctors and nurses either just checking in or checking vitals. If your doctor ever tells you they are putting you in the hospital for rest and observation you can tell them from me that they are full of shit; especially the rest part. Granted I often sleep only in 2 hour stretches anyway but having someone else wake me up every 2 hours to poke me and fiddle around gets old real quick.

     By the time I got to day 3 I knew something was up. I spent that day having what felt like every test known to man. They stuck a camera down my throat to look at my gizzard then I rode the Stargate machine, otherwise known as a CT scan. The pain in my back made the MRI virtually unendurable and they had to fill me with goofy juice so I wouldn’t fidget. I dubbed the MRI tech Cruella DeVille for her sparkling bedside manner.

     Later that day the doctor who I’ve spent the most time with these past months came to see me while I was waiting for another test. When he told me he was an oncologist I wasn’t surprised. My initial reaction was more like scared and pissed and in that order. I liked him immediately. The fire in his eyes communicated to me he would do his best to help me whatever it took.

     He told me I had Stage lllA adenocarcinoma small cell lung cancer that he saw in my left lung and he wanted to start me on chemotherapy as soon as possible. Some of the horror stories I’ve heard about chemo flashed through my mind as I listened to him tell me the plan.

     Over the next two weeks I spent a good part of many days sitting in waiting rooms for tests, bloodwork, etc. Since I was feeling pretty much lousy as a constant state of being at that juncture doing all this really wore me out.One of those trips included getting a little plastic and metal power port attached to a big vein just below my right collarbone. It’s used to administer chemo and take blood so I wouldn’t end up being looking like a pincushion. The damn spike they use to access it is over an inch long and it’s buried to the hilt when they use it. Thankfully they use freeze spray most of the time before doing that though the image of it going in is a bit freaky. And with no freeze spray it would bring me right off the chair. Fun was not had. I still have it and it’s not a problem other than the weird feeling I get when I happen to run my hand across it.

     After my first chemo treatment I was still continually fighting to breathe and I was worn out. My days turned into a series naps in my recliner when I wasn’t going for tests or doctor’s visits. My doctor put me back in the hospital after one visit when he became concerned about my breathing. So off to the ER again I went from inside the hospital this time for more tests. The ER doc looked at my CT scan and determined that the tumor had grown since I had started chemo. It hadn’t changed size it had just moved. Since oncology was not his specialty nor was reading CT scans he started a chain of events that landed me in the hospital for the next few days and also start the mapping out of the next several weeks. My Oncologist and Radiologist decided they wanted to push the start of radiation ahead and do both together. Little did I know what would transpire in the coming days.

     I’m not going to bore you, though I may have already, with the details of the hell the next 6 weeks entailed. This is the part where I talk about the cure being worse than the disease. It’s definitely true when referring to what we know of medicine here in the US. Losing over 60 pounds in the matter of a few weeks will knock the ever living shit out of you. By the time radiation ended I had 3 more stays in the hospital ranging from 2 to 5 days. The last one was for a blood transfusion after I crashed in the oncologist’s office and would have bitten anyone that got close enough to me. This happened during my last week of radiation. I was done with all of it. I was beat up, beat down and just plain tired of feeling like I wouldn’t make it through the night and enduring  other days hoping that I didn’t. Those were some dark days, very dark. Thankfully one of my radiation techs talked me off the ceiling to finish the last 4 days of radiation since I was having none of it.

     Since then I’ve been slowly building myself back up. Of course we all know patience is a virtue and there are days I don’t feel so virtuous. Patience with myself to get back to a sense of normalcy hasn’t happened fast enough for me, though it’s getting there.

     The good news is this. My first CT scan 2 months after treatment ended showed the mass had shrunk from the size of a billiard ball to be the size of the ball that comes with a set of jacks like I used to play with as a kid. Even better was the last one 2 months later that showed the tumor as nothing more than a shadow, basically gone plus the node I had from a dose of valley fever in my right lung is now gone too. Also, the part of the tumor that was pushing my spine and causing my pain is stable and hasn’t changed though the pain still reminds me its around. My voice is improving but I still sound a bit like a villain from a 40s gangster flick. Talking for an extended period of time still tuckers me out pretty well too.

    I do get tired out pretty quickly and the nueropathy in my hands and arms makes writing both therapeutic and taxing. When I get to the point of having to retype almost every word I know it is time to quit for the day. Naps have become an important part of my day to regroup and recharge. Life has become simple; Eat when I’m hungry, sleep when I’m tired, do what I can when I have the energy to do so.

     As of today, I’m doing good though right now I’ve reached one of those simple points; it’s time for a nosh and a nap.

     Thanks for reading, as always comments and shares are welcome. I’ll be here. I’m not going anywhere just yet.