Work at the cafe this week has been the usual up and down. There will be rushes of customers for an hour or more when I look up and see a dozen or so orders. Just as soon as I get two finished, Robin replaces them with three more. There is no end in sight. And then before long, everyone in the house has been fed breakfast in under ten minutes. The calm has replaced the storm, the rush has ended. And then a lull will settle in, which no patrons will enter the doors for minutes on end. That’s how it is in the cafe industry. At this time, I busy myself with restocking my supplies, chopping onions, peppers, tomatoes, and taking care of preparation that will soon be needed again. As my mind wanders, my attention to detail wanes. The intensity slips, the concentration slips, and sometimes the knife slips. This is not the product of any brain malfunction, however, it is the product of the venerable malaise that strike people of my age. Yes, I’m talking about the evil CRS. CRS (can’t remember shit) strikes a majority of 50+ baby boomers. It takes its main form in the fact that you know the face of the person you’re engaging, but there is no way in the world you remember their name. Oh, I have to leave here now. I just remembered, it’s time to head back home in hopes of procuring a new trache. Hopefully this will end the days of sleeping in a chair, not remembering what a bed feels like.
It has been a much different week than I may have surmised at the onset. The rains have given way to blistering humidity and temperatures far above the norm. It’s hotter than Tipper after she heard that Al had fondled a global warming junkie in an elevator. Perhaps the result of the humidity, maybe lingering effects of the past chest cold and bronchitis but for some reason I disengaged my trache. This was not through any fault of my own, but shear bad luck. In a coughing bout, the tubal conduit that provides air to my lungs simply became airborne. To the astonishment of myself and a few onlookers, this projective wafted a good four feet in mid air. Replacing it always takes the nimble fingers of my personal former surgical nurse. However, this time was different. Robin’s efforts were all in vain because the flanges holding the device in my windpipe were broken. Gone, simply gone to our astonishment. Needless to say its been a week of severe discomfort. This would call for a trip out of LIW in order get this fixed. Sleeping is almost impossible without the trache and REM is totally out of the question. Erin’s dear friend, a nurse herself and brain tumor survivor, alerted me that it may be possible to procure my needs at Duke Medical Hospital. So a flight scheduled for Raleigh was in order. This would prove to be a double bonus as I would get my much needed Erin fix while traveling Tobacco Road to and fro’ from Durham. But prior to my leaving, Mike the Porkmeister, hosted a Hawaiian Luau at the Gnome Cafe. This was another of his Friday Night Special palette stimulators. Pulled pork, pork loin, chicken on a skewer, rice, grilled veggies with Hawaiian sauce were the fare that piqued the taste buds into a frenzy. Usually there is a limited number of patrons that can be accommodated. If not, Mike would be serving into the late hours as his cuisine is not only award winning but may be the best damn thing you ever introduced to your mouth. Then it was hop on the bike and make the trip to Ryan and Carolyn’s. A night at their home would allow me to catch an early flight out of Philly. The medical expectations in Tar Heel land fell a bit short as the trache that I needed didn’t match any available ones. It will take a special order and another trip back to Pittsburgh to rectify this nightmare. However, the few days that I spent with Erin were priceless. We were able to share some private thoughts, fears, dreams and wishes that seem to bond a father and daughter with an uncompromising intensity. While at work, I ran errands for her, got her SUV serviced, cooked and pampered her to my hearts’ delight. But day prior to my coming to Raleigh, I received an email from Tom and Nancy, a workamping couple that we befriended some two years ago. As a stroke of luck they had two off days from the KOA stint in Fayetteville, NC and would be coming home. They live just a short jaunt from Erin’s and my call concluded with the fact that I would call upon them on Wednesday. I drove to their home and after exchanging hugs, kisses, and handshakes they hosted me for lunch at the “Over the Falls” cafe in “old Wake Forest”. Their daughter Debbie and two month old granddaughter joined us for some sustenance as well. For the next three and a half hours we shared our workamping experiences and caught up on whereabouts since our last engagement. We returned to their home and escaped the humidity of the day by sitting on the back porch in front of a fan sampling glasses of wine. Their hospitality and camaraderie only intensified how much we had missed them. Both Robin and I shall spend time with them following my surgery on our trek South for the winter. We’ll be able to set up in their adjacent driveway as they established an 50 amp electrical hookup, waste disposal, and water all under shaded maples. This may be the best free campsite I will ever engage. Back at Erin’s we sampled some wonderful cuisine of our own during my last night there. Leaving her is always tougher for me as I grow older. No matter her age, she’ll always be my baby. Ryan retrieved me at the Philly airport and treated me to lunch and then I spent some time doing data work for him at his home office. By five, I was getting antsy to see Robin. It was a great break after two months together in a traveling bus but now I was missing her severely. I hopped on my bike and decided I would avoid the beltway and take a “blue highway” route back home. As my thought process wandered to a myriad of venues while looping around West Chester, I missed my exit. It proved advantageous. Not only did I miss a great deal of rush hour traffic but Rt, 322 gave me winding roads, farmland and eye candy that I would never have seen if I hadn’t been daydreaming. I rumbled into our site at LIW about 6:30. Robin’s provocative smile, the fishnets and five inch heels framed by the RV’s entry door proved eye candy beyond a masterpiece. The vision welcomed me home with a smile that wouldn’t end. Yes, it’s still a bitch living without my trache, but the visit to my daughter, seeing old friends Tom and Nancy, and coming back to my vamp of three decades was a fair trade-off. We’ll make a trip back to Pittsburgh at weeks end to have my surgeon ease my discomfort and relieve my airway with out patient attention.
Glamping: glamourous camping; combining the splendor of the great outdoors with the comfort of a top-tier hotel.
I suffer from a disease called Seasonal Affective Disorder (SAD). I’ve had this for as long as I’ve known. The symptoms are depression brought on by a lack of exposure to natural sunlight. This is blamed on the circadian rhythm or so-called biological internal clocks. Other symptoms may include a craving for sugary foods such as sweets, candies, and refined carbohydrates. The answer to this is remarkably simple. In order to reverse Seasonal Affective Disorder (SAD), the only treatment necessary is of course to get more natural sunlight on your skin. Herein, lies my problem. It’s been constant rain here for three days without a hint of sunlight. I find myself looking forward to going back to work instead of pining for off days. Of course, a lot of that has to do with the fact that I love my job. But then at five this afternoon, the deluged stopped. And in moments there was a glint of sun starting to peer through the lengthy maples. I must get out. I’ve even had enough of the History Channel’s American Pickers. I needed the daily 90 minute trek to get the blood flowing, the synapses firing, and to fight this nemesis SAD. This would enable thoughts to run rampant, entertaining me along the way. It always does. Motion creates emotion. And as I walked I wondered how and why I got to this point….that of fulltiming. It all began in 1962. I was ten with a brother two years my junior. My mother was pregnant with my sister. Dad was away for eight weeks taking summer courses in pursuit of an administrative degree. His goal was to become a more lucrative provider for his young family. Every Saturday we went shopping to the city of Uniontown. I cherished these trips as I knew a stop at Franks Auto was in store. At that time, they possessed the best fishing equipment a young lad could dream about. I had a penchant for stuff which still remains intact today. But one such weekend in July we went to the Sears and Roebuck store. This had to be the largest retailer I’ve seen in my young life. I still remember the oiled wooden floors and going to the basement for the really big appliances. I was euphoric as thoughts of a colored television ran through my head. But the parents had other ideas. Mom wanted to can and freeze food in order to save some money. What an odd thought. Not to save money but to go through all that work just to freeze garden vegetables. Nevertheless, they purchased the largest chest freezer available and without any damage, I was bequeathed the giant cardboard box it came in. It would prove to be my first foray into sleeping outside the home. We even cut skylights in it’s roof to watch the passing stars. I was hooked by the pallete of stars in the night sky.-By the time my teens rolled around this would give way to the cumbersome canvas Baker tent introduced to me by the Boy Scouts of America. The love of ‘camping’ continued and was forced on my wife-to-be. Robin’s love for me proved far greater than her desire to sleep on the gound. She eventually agreed to external-framed backpacks, nylon two-man tents, and weekends of miles put on hiking boots until finally common sense gave way to blisters. The camping would continue until the children came along and we purchased our first used pop-up trailer. The years in the pop-up would provide memories that are discussed even today. As the years passed and our financial futures became brighter we graduated to new pop-ups, travel trailers, Class C’s, and five Class A’s, three of which were deisel pushers. And with each new RV, more and more amenities came along. But regardless of the frills there were always campfires, S’mores, gallons of Kool Aid and a bevvy of children running around. Time has a way of changing everything. The children are now adults and have their own lives. Convection ovens and hydraulic jacks have taken over Coleman propane stoves and wooden planks. The Kool Aid and S’mores exchanged for wine and yogurt and fruit. But the campfires remain constant and nothing deters that but Mother Nature. And the myriad of children running to and fro has been altered by Baby Boomers sitting adjacent the flames sharing stories of how they too have gone from roughing it to glamping. We’re still camping, but on leather couches, satellite TV, a queen size bed, and electricity at the tough of a button. Perhaps this fulltiming is a reach back to a more innocent time, maybe its nostalgia. But for me, its the independence, the ability to move at a moment’s notice, and a constant need to be entertained with eye candy. However, we do it now while pampering our asses. Thank goodness for the sun.
My hiatus from posting here is not all my doing. The WiFi at our site has been down for four days. The Verizon wireless stick is to no avail here deep in the woods of Eastern Pennsylvania. It’s amazing to me. Reception was fine in the deserts and mountains of Arizona, the Badlands of the Dakotas and the Bayou of Louisianna. Yet, here we are, a mere hour from Philadelphia and the cell phone reception pretty much sucks. I didn’t realize how much I am dependent upon the internet. Not so much for the communication, but for the entertainment factor. It stimulates me far more than TV. The ability to keep in contact with friends, read others’ blogs and search for information on a myriad of topics is one of the highlights of the day. Instead, I’ve chosen to begin a walking program in preparation for surgery. I have 65 days to prepare for this. There are no athletic clubs, gyms, or workout centers that exist in the area. I’m relegated to a series of band movements for the upper body muscle tone, squats and walking for the lower limbs. My physical condition proved to be a winning formula the last time I did battle with cancer. I won. I was in the best shape of my baby boomer life. I’m determined to establish that zone once again in hopes of saying one more time…… I win. So it’s been a daily saunter of four miles, half of which are hills. I have cut back my food intake considerably. That seems to be an easy thing to do, considering I’m cheffing at the cafe. Being around food most of the day, it becomes mundane. You get tired of seeing the offerings over and over. By the time I’m home, I have no penchant for regular food. However, the results of limiting my food intake to this point have not met my expectations. Perhaps it’s due to the fact that I don’t consider dessert as regular food. I’m surmising it’s the berry pies, whoopie cakes, or the ice cream that keeps getting in the way of progress. The camp store provides a revolving choice of flavors of which has to be the best ice cream you’ve eaten. This has even replaced my nightly routine of Oreo cookies. But this too shall pass. The ice cream will become a foregone fad and whoopie cakes won’t exist out of the Amish country. So I shall become once again relegated to just the fruit pies and chocolate. This is going to be a formidable test.
Work this week at the Gnome Cafe went well but wasn’t as busy as I had thought. I just figured we’d be inundated with customers given the fact that the campground was at maximum for this July 4th weekend. Nonetheless, it proved to be to my advantage. The chest cold I received from Robin turned out to be more than I expected. I haven ‘t posted simply because I didn’t have the drive to. After work, the malaise had turned to the full blown flu. All I could muster was this slideshow of a great golfcart parade at Lake in Wood. Apparently this is an annual event, complete with DJ, music and later in the day, a drive in theatre was set up with one of those inflatable screens. The carts pulled in ala your old fashioned drive in theatre.
Mid week went by pretty much uneventful. Robin was still down for the count so when Cathy and Russell invited me to tag along on a bike ride I jumped at the chance. They’ve been in the area for awhile so I figured they knew the backroads far better than I. They camped here for years and a year ago purchased a park model. They work part time in the office assisting with the computer system. We did a three hour circle and they pointed out some interesting sights. I noted Russell’s GPS system as there would be no way in the world I would be able to find those places again on my own. Meandering the hills of Berks Country proved much more interesting that I thought as a wealth of switchbacks was something totally unexpected. Upon my return, Robin was feeling better but by evenings end I could feel she had passed this chest cold onto me. Thursday and Friday were relatively slow days at the cafe. A good thing as I feel totally washed out. Thank goodness we picked up a healthy supply of cillins (penicillin, amoxicillin, etc.) when we visited Mexico while down in Arizona this past spring. All I want to do when we get home is sleep as my eyelids feel about as heavy as the July humidity. Hopefully this will all be gone by Saturday so we can enjoy the golf cart parade scheduled for the 4th festivities.
Posted by larry on June 30th, 2010 in Cancer, RV, Rants
“One minute I held the key, next the walls were closed on me.
And I discovered that my castles stand on pillars of salt and pillars of sand.”
Being free from the duties of the cafe today we had planned on making the trip across the Delaware River to visit with Ryan and Carolyn. However, Robin spent most of the night on the couch, hacking through a chest cold. She insisted I make the trip alone and spend some quality time with our son. She didn’t want to expose anyone else to her summer misery. It proved to be a great time to process the vast amount of information that I’ve been gathering the past few days. Allow me to alert you here as this may be another lesson on cancer. Hopefully it will be the last for awhile. I don’t want to bring you to boredom but several emails over the past few days have requested this information. I hope to share what I’ve learned with other cancer patients, especially those possessing chondrosarcoma. Chondrosarcoma is a rare form of cancer. It develops from normal cartilage which goes through malignant change. People who have chondrosarcoma have a single tumor growth which can vary in size and location. If chondrosarcoma is found in the region of the neck, it can be located in the cartilage of the larynx, (hyoid or cricoid) or the cervical spine. If it is found in the skull it is usually found in the skull base, beneath the brain. You see where I’m going with this? My first stint with the disease was such, located in the windpipe, attached to the larynx. Successful surgery, albeit an altered voice but still a voice. The tumor I now possess is in the base of the brain. I’m thinking logically and hopefully without much emotion and I’m seeing a great chance of another bout of chondrosarcoma. The tumor has grown from the size of a dime to that of a quarter. There is considerable swelling of the brain around the tumor. In all my research I have found confirmed what four surgeons have previously stated. There are no known alternative treatments to cure chondrosarcoma. None. If you, the reader should happen to have substantiated proof of an alternative cure for this rare cancer, please inform me. The most effective method of treating chondrosarcoma to prevent recurrence or possibly create a cure is ablative surgery with clear margins. There you have in just a small nutshell what I’ve learned over the past few days. Enough of the lecture circuit. It usually takes an hour and fifteen minutes from Lake In Wood to my destined village in New Jersey. Today’s traffic and orange barrels cost me an extra hour. It proved to be fruitful. By the time I had reached Ryan’s house my decision was made. I will forego the cyberknife for surgical removal of the tumor. (I have always known when to hold ‘em, but also when to fold ‘em.) It shall wait until September as I’m still asymptomatic. Why September? Dr. Howard Goldberg, my personal hero, allowed me to choose the date for my first cancer surgery. I chose 9/11 and that proved successful. My quest is to have history repeat itself. I shared my decision with Ryan and then Carolyn as she came home from work and we all went out to the Hollywood Diner for lunch. Then Ryan and I cruised the aisles of Home Depot in search of a new Dremel. (I’m making some new plant stands out of PVC pipe) My old one just doesn’t seem to want to hold on to any accessories. Then it was back home to his office. Ryan is in the modern technological world where his office is in his home and video conferencing takes place in a pair of shorts and t-shirts. I played man-secretary for him, scanning and shredding while he worked his computer magic. It was a great day. I was able to stay until late in the afternoon. As I was crossing the Commodore Barry bridge, I phoned UPMC and informed them of my choice. Cancel the plans for the cyberknife. I have chosen the full scale surgery. I didn’t want them prepping for the knife when it would be all for naught. They informed me that they were pleased that I made the right decision. Orange barrels and traffic congestion from that point on just seemed to be of moot concern.
Sunday morning. It’s busier today than any other day. I thought I was prepared. Enough eggs beaten, pancakes mixed, bacon and potatoes fried all beforehand to prepare for the crowds. And then the onslaught. It didn’t wait for church to be over, it started as soon as the doors opened at 8. I looked up from the grill and there hung 14 orders awaiting my attention. And then I glanced over my shoulder, I saw the line extend from the counter, out towards the door and down the steps. This was going to be non-stop for awhile. The next time I turned around to see that every order was addressed and no slips hung before me it was 10:30. But this is the way of the cafe. There is no consistency or humming along. There is either no one or they come in droves. I love the droves. I need the rush. It exhiliarates me to have so many want their cuisine in such a short time. It’s a contest. And I’m winning so far. It made the day just fly by and 2 o’clock came quickly. Back to the RV for some R&R. Robin needed it as she ran her feet off. Me, I still needed to think. Time for a bike ride. I began touring the county and made it to Route 30, the Lincoln Highway, just outside of Coatsville. It wasn’t three minutes heading west that I encountered the revolving red lights carrying the paramedics. I immediately thought about giving up the bike. There in front of my eyes he lay. Lifeflight hovering over the treetops. Photos will remain from view to give some sense of decency to the victim. I just want to point out to you brethren riders that we need to be extremely careful out there. By 6:30 I had just garaged the bike in the trailer and headed out on my golf cart to the other side of the grounds. I had heard a mother skunk had four little ones following her and I was checking for photo ops. Going no more than past the office I encountered Cheryl coming my way. We paused to exchange pleasantries. She had an invite in mind. In ten minutes I was back with Robin heading to the site of Cheryl and Jerry. She had tempted me with homemade blueberry pie a la mode. And you know me. I would rather have pie than food. Cheryl works as the meter reader, manning the front gate and a few other things. Jerry , well he fixes everything. And if it’s not broke, he’s maintaining it. Jerry is the maintenance emperor. Everyone in the park knows him by name. We have a connection with them via North Carolina along with some commonalities by way of public education. But the pie was not the real reason our visit was so pleasant. Its just that these two are such congenial and unassuming souls. The more people I meet here, the more I find how genuine my colleagues seem to be. By the time our visit ended, we needed the headlights on the golf cart. How entertained I was today.
Posted by larry on June 26th, 2010 in Cancer, Health
Note: This post may seem about me and my personal situation. I hope you don’t take it that way. I’m not so egotistical or vain in thought that I would consider or entertain empathy. My reasoning behind this post is that many readers out there are experiencing cancer, brain issues, or have family members that have such. And if my words can share a bit of information leading to a better choice, then the effort will have been worth it.
We made the four hour trip back to Pittsburgh the other day for a scheduled visit to UPMC Shadyside and the Hillman Cancer Center. I was to meet with the Cyber Knife team to discuss my situation and possibility of having that procedure administered to my tumor. It would prove to be a long day. An appointment at 1 p.m. lasted until our final departure at 6:30. After filling out documents and going through the paper mill that one does when a new patient, I finally met a team of three doctors. Upon review of my MRIs and condition they offered their best recommendation. Due to the growth and size, their suggestion is to have it removed surgically. Portraying congenial facial expressions, I nonetheless felt a nauseus jolt to my soul. I was overcome with a depression that I didn’t want exposed. Afterall, I expected to hear otherwise. I expected the Cyber Knife to be my eutopic remedy. I had heard this at the previous hospital. I wasn’t prepared for this letdown. The reasoning behind their decision was due to various things. First, the tumor has grown to the size of a quarter. But the brain swelling around it is considerable. They also don’t exactly know what the tumor is. Other neurosurgeons have expressed similar opinions. If the tumor proved to be chondro-sarcoma, the radiation of the cyber knife is rendered useless on a tumor of this nature. Being that chondro-sarcoma was the tumor in my trachea three years ago, I saw their line of thinking. Nonetheless, they don’t know for sure. And if it proved to be such, then the radiation from the cyber knife will just accelerate the brain swelling. This wasn’t a bitter pill to swallow, this baby was larger than my mouth could accommodate. They did offer the option of Cyber Knife treatments, enforcing to me however, that this would be no better than a 50/50 chance of success. I explained to them I still have no symptoms. I batteried a series of physical tests that stressed my balance, my equilibrium, my rapid eye movement, the whole gamut of brain challenging tasks. Both times, my results were that of a perfectly balanced young man. Their faces showed me they were perplexed. I saw an opening here. Asking that if the tumor was not sarcoma, perhaps composed of other elements, could the Cyber Knife prove successful. They responded positively, given those circumstances. So what if, just what if, the tumor is anything but sarcoma. No one knows this for sure. So hope continues to spring eternal. And just what if the Cyber Knife is successful. And perhaps any swelling as a result still won’t prove debilitating. And if not, then surgery was the only option last month anyway. There is much to think about. And if those of you reading have questions regarding this, please feel free to email. I just hoped sharing this may help your own cause. I always taught my children that as they grow older, the toughest thing in their lives would be making choices. As you grow older, they become tougher. I am now a product of my own philosophic predictions. I stand at my own crossroads. A life changing decision will be made shortly. But I rejoice. My position is good news that at first I didn’t perceive. I Have A Choice. They didn’t give me a decision with no alternative. Surgery could have been their only choice. But I am the luckiest man on the face of the earth. Again, I may have been given another chance. The choice shall be made after some mental deliberation. But I have the chance to choose, and that choice is mine, all mine.
On Monday we played golf as it would be the last time this week. As we were teeing off on #3 we looked over and saw Charles and Annette, fellow work campers just a hole behind us. Chuck was playing alone while Annette, hampered by a bad wheel, manned the driving. As we were waiting on the foursome in front of us, we asked them to join us. It was bittersweeet. We enjoyed chatting with co-workers but Charles proved far too good for the both of us, demonstrating lessons in perfect golf shots over and over. I’m sure we’ll find them as partners in the near future. Later in the day, I needed to just cruise on the bike. That gives me some time and solace to think. As I rode past pristine and bucolic farms, manicured and looking almost surreal I thought about leaving here the next day. Things have drastically changed for me as per the brain situation. As stated in previous posts, I had decided to wait until after the current work stint for surgery. I still have second thoughts on having my head cut open as I have yet to exhibit negative symptoms-or any symptoms at all. For the last month, I’ve been researching the CyberKnife. There are only six of these in the entire U.S. After some deliberation I sent a detailed email to the CyberKnife team at UPMC Shadyside in Pittsburgh. The next day I received a call stating they wanted me to visit as I appeared to be a good candidate. This excited me as the CyberKnife is non-invasive. There is no cutting of the skull and would require no general anesthesia. This is a major concern for me as being put out would entail removal of my trache. Not a pleasant thought for me considering past horror stories with its’ removal. Actually the robotic machine conentrates on the center of the tumor, continually blasting it with laser sent radiation. The entire purpose is to shrink and possibly eliminate the entire tumor. I’m sure this process is much more detailed than I’m pervaying but I’ll leave that until I actually encounter the procedure. The ride allowed me to become intensely introspective regarding this endeavor. It’s not something that can really be shared as the mental images searing my brain come in droves by each nano-second. The personal feelings run the gamut from elation to fear. The rolling hills of Lancaster County proved to be the perfect elixir and stimulant to thought. Tomorrow we leave for Pittsburgh.
Work at the cafe this week has been the usual up and down. There will be rushes of customers for an hour or more when I look up and see a dozen or so orders. Just as soon as I get two finished, Robin replaces them with three more. There is no end in sight. And then before long, everyone in the house has been fed breakfast in under ten minutes. The calm has replaced the storm, the rush has ended. And then a lull will settle in, which no patrons will enter the doors for minutes on end. That’s how it is in the cafe industry. At this time, I busy myself with restocking my supplies, chopping onions, peppers, tomatoes, and taking care of preparation that will soon be needed again. As my mind wanders, my attention to detail wanes. The intensity slips, the concentration slips, and sometimes the knife slips. This is not the product of any brain malfunction, however, it is the product of the venerable malaise that strike people of my age. Yes, I’m talking about the evil CRS. CRS (can’t remember shit) strikes a majority of 50+ baby boomers. It takes its main form in the fact that you know the face of the person you’re engaging, but there is no way in the world you remember their name. Oh, I have to leave here now. I just remembered, it’s time to head back home in hopes of procuring a new trache. Hopefully this will end the days of sleeping in a chair, not remembering what a bed feels like.
