Monthly Archives: April 2014

2 years ago today I was headed to Memorial Sloan Kettering for my week long stay.  Looking back I must say I really miss it.  I got to relax because I wasnt able to move my leg for over a month.  I got room service every day.  I got to meet a new roommate that did nothing but talk and yell in a very loud voice ALL THE TIME.  When I think about it there is nothing but fun!  I got to do whatever I wanted to do as long as it involved lying down in a hospital bed for a week.  No sitting up, no turning on my side, no moving.  And once you make it through the week here you get your very own hospital bed to take home with you because we can tell you love it so much!  Just sit in it at home too!  Be sure to keep your leg HORIZONTAL, but only for a MONTH!  After that learning how to walk again won’t feel too awkward, you’ll pick it up in no time!  Who wouldnt want to do that?  Ahhh, good times!  When its put into perspective of saying do all that and we’ll let you live, then the trade off seems like a good deal.  So truthfully, it wasnt all that bad considering the alternative.  

This is just a quick update on what has become one of the greatest dates in my lifetime.  Only December 7th and July 7th might be able to top it.  2 years is a significant milestone for this type of sarcoma.  I know, it doesnt mean bells and fireworks go off signaling the all clear and I dont ever need to worry about it again.  Sloan has a great reminder program that automatically makes you think about it every 6 months.  After you stay with them for a week you earn Bonus Visits with their rewards program.  It includes free visits every six months so they can give you the thumbs up or thumbs down to go on with your life or not.  As great as it is, I wouldnt recommend signing up.  

Thank you to everyone that has gone along for the ride with me on this!  I couldnt have done it without everyone.  A strange thing occurred along the way.  Some people have mentioned they actually enjoy reading the updates?  Thank you so much for mentioning it.  I really appreciate it.  I had no idea.  It was mostly just me babbling on about stuff so I’m glad you like it.  I never knew following these simple rules would work out so well:  

How to Write Good

  1. Avoid Alliteration. Always.
  2. Prepositions are not words to end sentences with.
  3. Avoid cliches like the plague. (They’re old hat.)
  4. Employ the vernacular.
  5. Eschew ampersands & abbreviations, etc.
  6. Parenthetical remarks (however relevant) are unnecessary.
  7. It is wrong to ever split an infinitive.
  8. Contractions aren’t necessary.
  9. Foreign words and phrases are not apropos.
  10. One should never generalize.
  1. Parenthetical words however must be enclosed in commas.
  2. It behooves you to avoid archaic expressions.
  3. Avoid archaeic spellings too.
  4. Don’t repeat yourself, or say again what you have said before.
  5. Don’t use commas, that, are not, necessary.
  6. Do not use hyperbole; not one in a million can do it effectively.
  7. Never use a big word when a diminutive alternative would suffice.
  8. Subject and verb always has to agree.
  9. Placing a comma between subject and predicate, is not correct.
  10. Use youre spell chekker to avoid mispeling and to catch typograhpical errers.
  11. Don’t repeat yourself, or say again what you have said before.
  12. Use the apostrophe in it’s proper place and omit it when its not needed.
  13. Don’t never use no double negatives.
  14. Poofread carefully to see if you any words out.
  15. Hopefully, you will use words correctly, irregardless of how others use them.
  1. Comparisons are as bad as cliches.
  2. Don’t be redundant; don’t use more words than necessary; it’s highly superfluous.
  3. Profanity sucks.
  4. Be more or less specific.
  5. Understatement is always best.
  6. Exaggeration is a billion times worse than understatement.
  7. One word sentences? Eliminate.
  8. Analogies in writing are like feathers on a snake.
  9. The passive voice is to be avoided.
  10. Go around the barn at high noon to avoid colloquialisms.
  11. Even if a mixed metaphor sings, it should be derailed.
  12. Who needs rhetorical questions?
  1. Eschew obfuscation.
  2. No sentence fragments.
  3. Don’t indulge in sesquipedalian lexicological constructions.
  4. A writer must not shift your point of view.
  5. Don’t overuse exclamation marks!!
  6. Place pronouns as close as possible, especially in long sentences, as of 10 or more words, to their antecedents.
  7. Writing carefully, dangling participles must be avoided.
  8. If any word is improper at the end of a sentence, a linking verb is.
  9. Avoid trendy locutions that sound flaky.
  10. Everyone should be careful to use a singular pronoun with singular nouns in their writing.
  11. Always pick on the correct idiom.
  12. The adverb always follows the verb.
  13. Take the bull by the hand and avoid mixing metaphors.
  14. If you reread your work, you can find on rereading a great deal of repetition can be by rereading and editing.
  15. And always be sure to finish what

Where were you April 15th, 2013? One year ago today my name changed.

Almost one year prior to that I met with Dr. Healey for a long discussion about what to expect after the knee surgery.  After explaining what he did to remove the tumor and telling me about other experiences he had with similar sarcomas  he started spewing all sorts of statistics and percentages about other people he had operated on.  He seemed to think things did not look very good for me at the time. “you’re going to die from this” are words that kinda stick in your head for while.  He suggested doing chemo ASAP, however the wound from the surgery had not healed quickly enough to get started right away.  (Thanks Radiation!)  Even if I could start that day I seem to recall him thinking the chances of chemo working were somewhere in the range of about 5-6%.  The longer I waited to start chemo the greater chance to metastasize and cause an entire new set of problems.  Start too soon and the surgery would never heal.  “you’re in a pickle” was the medical term I believe he used.

A few days later I met with Dr. Gounder, the Oncologist.  His outlook was quite different.  “”You’re going to be fine” and phrases like “soon you’ll be back to normal” flowed out of his mouth like it was just a bad flu or something.  He wasn’t sure where Dr. Healey was getting his info from and strongly urged me not to worry about what Dr. Healey told me.  So, I had that going for me.  I don’t know about you but when I was first diagnosed with this crap I started envisioning all these doctors and huge teams of people in white coats, scientists in lab coats, people in suits from drug companies and teams of others sitting around in a conference room discussing MY case.  They’re pouring over records, pencils in their mouths, staring at clipboards and charts and every medical study ever done on sarcomas trying to figure out how best to treat ME and ONLY ME at the time.  But no.  My two doctors never even gave the impression they met face to face to talk about me.  MAYBE they exchanged an email or two at best.  So when I asked Dr Healey if they ever talk to each other about it he said yes but it doesn’t mean we agree.

That meant for 2 years I have “You’re going to die from this” and “You’re going to be fine” battling it out in my head.  Finally, one year ago today Dr. Healey showed signs that there was the possibility of coming over to Dr. Gounder’s side.  Dr. Healey was the one I hated to see when I went for the scans every 3 months.  I just wanted to get in, get scanned, get the results and if everything was OK I just wanted to leave.  But last year the words came straight from his mouth that I could be called NED!  (No Evidence of Disease) Dr. Gounder had been calling me NED for a few months already but to hear it straight from the guy that once tells you you are going to die is such a giant weight lifted off my shoulders!  I remember after I left his office I walked all the way from Sloan at 67th and 1st Ave all the way to Penn Station at 34th and 7th before I realized it!  Normally its a cab ride or subway but I didn’t care this time.  I just started walking and didn’t stop I was so elated.

11 Days from now it will have been 2 years from the surgery.  What a Long, Strange Trip It’s Been.  It still seems far from over but certainly seems as though I may have made it over the hump.  The scanxiety at the next scans will probably be high in June.  Those will officially be results of the 2 year mark which is a giant hurdle to get over in terms of recurrence and survival rates.  Until then, continue to call me NED please!  Or you can call me Ray, or you can call me Jay…..but ya doesnt has to call me Johnson.

Or you can Call Me Al, (Paul Simon) Call Me Maybe, (Carly Rae Jepsen)  Call Me (Blondie)

Had to add a stupid funny clip too..another one for some reason cracks me up

Two Sh*(&)*)s