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Knowing Chondrosarcoma?

Posted by on June 30, 2010

“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.

15 Responses to Knowing Chondrosarcoma?

  1. Paul from Canada

    Good decision Larry, it took you a while to get there, but you finally made the touch down in the football stadium. Now we wait, i can live with your logic for a September operation which is roughly 8 weeks away. Enjoy yourself this summer behind the grill, don’t forget about your trip up North some day, paul

  2. larry

    Paul and Russ and Debbie and all the rest of you. I can’t thank you enough for your words of encouragement, your information helping me make the decision and for just being interested in the website. Appreciation is a word that only comes close.

  3. Harry Miale

    Larry,
    Sporadically, I read your web-site to keep up with your travels. Did so this morning (this is my last day of work – will begin my retirement starting tomorrow). Read about your upcoming surgery. You know my thoughts and prayers will be with you. I’m sure you’ll do fine – just like all your other challenges. Speaking of my retirement, things look great for me. You must be tired of me telling you how appreciative I am of your support during our time together at Brownsville. Not only was it enjoyable, it has set my retirement. I’ll always be grateful to you. Take care and, again, good luck. I’ll be thinking of you!

    Harry

  4. Chuck

    Sounds like you have worked this through carefully. Having been thru one decision process with cancer myself, I know how tough it is to make the hard choices. You have made it and I wish you all the best.

    Enjoy your summer!

  5. Pat Clear

    Larry, so glad you were able to make a decision…. I know how
    hard this has been on you and Robin…but I’m sure it will be
    the right one…our continued prayers and thoughts are with
    you…..love Pat

  6. Debbie

    Larry, my friend, my “brother” in law…..I’m glad you’ve made your decision, it’s one you did have to make for yourself, albeit a dificult one……….and it took that moment, in that day, to show you the way. I’m sure you have the weight of the world on your shoulders, but, it may have lessened a little now. Just know that I will be offering up prayers as I have been, each and every time you are in my thoughts…..and will be with you and robin all the way. Happy Trails Gypsy Larry~

  7. Bill Drawman

    I found your site via google thanks for the post. I will save it for future reference. Thanks Mutual Investment Fund

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