On May 29, 2008 I was diagnosed with Tonsil Cancer. I created this blog to share my thoughts and sequence of events for family, friends and others that are experiencing the same "Inconvenience in Life."
I have been blessed with a great life full of wonderful experiences, a caring family, a fabulous wife, outstanding children, good friends, and satisfying careers. Each day is truly: Another Day in Paradise.
My apologies for being remiss in posting the results of the latest CTScan. In my enthusiasm for the good report, I thought I had covered all the notification bases. There are readers that are not on my personal e-mail list and probably wondered what was up with the last post - "waiting on results" and then dead air.
I have a greater appreciation for the statement" Today is the first day of the rest of your life". I made a list of things I wish to do or accomplish - not that I have a gift certificate for an extension on my warranty. It is so long - I will live to 100 to get them all done. None are places. None are things to acquire (actually the opposite on this one- to divest vs acquire).
Trying to find that elusive "time" to accomplish my goals, I have started a new schedule of getting up at 5:05am (fascinated by the power of 5). With responsibilities as a husband, father, employee, chef de la casa, chauffeur, volunteer, non-profit board(s) adviser, etc., there just didn't seem to be enough time in the day to take on the new list. I have discovered 5am. I have also discovered no one wants to be your friend at 5am. Solitude and productivity.
So here is the technical side of the doctor's report - translated: no apparent signs of cancer at this point in time.
CT results
To:
Robert L Welton
From:
NATHALIE TUYET-NGOC NGUYEN MD
Received:
3/9/10 12:00 PM
Mr. Welton,
Below is your recent CT scan liver result. It is consistent with hemangioma and cyst. I would recommend no intervention at this time and you can follow with your PCP for this in the future.
Regards,
Nathalie T. Nguyen, M.D. Radiation Oncology
CT ABDOMEN
** HISTORY **: Followup liver lesions on previous studies, history of squamous cell carcinoma, oropharyngeal
** FINDINGS **: Technique: Axial images of the abdomen were obtained before and after the administration of 100 cc of Visipaque. Arterial and portal venous phase images were obtained.
There is a 10 mm probable hemangioma in the posterior inferior right lobe of the liver. There is nodular discontinuous peripheral enhancement. There is a 4 mm right hepatic lobe cyst. There is a probable 5 mm right hepatic lobe hemangioma. No additional liver lesions are seen. Subcentimeter lesions are difficult to completely characterize due to their size. The imaging features above are most typical for hepatic cyst and hemangioma.
The spleen, adrenals, pancreas, gallbladder and kidneys appear normal. There is no bowel obstruction. No ascites is seen. The aorta is normal in caliber.
** IMPRESSION **: 1. the previous lesions characterized on CT likely represented two hemangiomas and one hepatic cyst.
Today will be an interesting day. The last (latest, most current, final) CTScan test was done Friday night at 10pm. Kind of a good or bad, A or Z, probably nothing in between test results should be in today. No word on the results yesterday. Scanned my emails, jumped when the phone rang, made a call to the radiologist, left a message. drank wine, drank some more wine, re-read by blogs, slept not so well...perhaps not enough wine..ha.
The half good news is that the tonsil cancer has not returned as of now in my throat-mouth area. The waiting now is to see if the spots they see on my liver are benign cysts - or not.
The dice have once again rolled (for now), the cards are in front of me, face down. Will post again when I know about the extension of my warranty - ha.
Three CtScans in three weeks. Whew. The good news is that they aren't finding anything definitely bad each time. The not-so-good news is, they keep finding something that prompts them to run yet another scan.
Two weeks ago I had my 1.5 year ck-up scan and all concerned areas were clean.[good news], BUT they detected "something worth checking out [not so good]
Last Monday had a second CTScan with injected dye and 900ml of Barium Sulfate to ingest first. Report came back "mostly" good:
"It suggests a few liver lesions, which are most likely benign hemangioma which in layman's terms, is a noncancerous lesion that occurs as a result of poorly formed vasculature. No real intervention is needed in most cases and most likely they do not develop into cancers. However, to confirm that these small lesions are hemangiomas, we can do a more specific CT scan, focusing more on the liver. I will order this CT for you along with again premedications and oral contrast to be picked up prior to the scan."
So, I have the third scan tonight 9:20p PST with Readi-Cat Barium "smoothie".[note- there is always HUMOR everywhere - I have a choice of chocolate, berry or banana - But the instructions are in two parts. Part a. is relating to use as an enema...a banana smoothie up my butt?Is there no mercy here? My wife laughingly pointed out I was to use the "part b" protocol for "oral consumption" – ha.
There is no discomfort in any of this other than the 24 hrs before mind-games and the 72 hr-after waiting for the results. I have a fairly powerful proactive mental health program that has stood by me this past two years, but having to max it out for 3 weeks in a row is wearing thin. There seems to to be a chunk of Kryptonite around here somewhere. I cut the last two scan reports in half, discarding the HOWEVER, blah, blah, blah and just kept "everything seems to looking good" part. Read before going to sleep.
I should have ponied up and asked for the 60 or 70 year warranty. Still glad to be here, however, haggling with the Big Service Manager in the Sky...will know next week if He bought my pitch.
Had my CTScan last night to check out the mysterious spots on my liver from the last partial scan. The waiting for results is the hardest part. Handled the chemo and the radiation. Handled the emergency room visits. Handled the hair loss. Handled the loss of 35lbs when I only had 10 to give. Handled the off work for 6 months going crazy out of my mind with boredom.
The test is done. Either I have a minor issue with cysts or scars or I have liver cancer. One is a minor problem with a bunch of years ahead of me or I get the sentence no one wants. It is like looking at a present under the tree with your name on it at Christmas. But it is Christmas eve and you can't open it until tomorrow. You have to wait. And Wait. And Wait. What you asked for was a pony. The box is big enough. Could be the pony - could be a ton of horse manure?
Living in three and six month increments is tough. I like the living part, but having tests to see if you are going down the cure trail is tough. It is the day before the test and the day after the test waiting for the results that is the toughest. It is like voting off a contestant on American Idol where there are two contestants left, they open the envelope look at the results, look at both contestants and say - "one of you will stay and one of you will go away- and the answer is...we will let you know after right this commercial." AAAARRRRRGGGGHHHHH.
I have found five things that have helped me get through the waiting time:
* The Power of Positive Thinking! By far the best tool for me. I had a great mentor named Ron Frank when I worked for U-Haul Corporation many years ago. His advice to me was pretty cool. He said "Think of the person you respect the most in your life. Imagine them calling you first thing in the morning and telling you how much they appreciated you, your talent, your skills, your character, the positive things you brought to every relationship. What would the rest of your day be like?" Wow! I would be unstoppable. I would be on top of the world.
"Now imagine them calling you first thing in the morning and telling you that they no longer appreciated you, you were not worthy of them being connected to you and you brought no value to the relationship...what would the rest of your day be like?" God, I would go back to bed with a bottle of Jack Daniels and not leave the house.
If your mind is set to believe what you hear from others and the people you respect the most - they have the power over you and your days. Good and Bad. He taught me to BE THE PERSON I RESPECTED THE MOST and make that all important phone call to myself every morning. Have done so every morning thereafter. Before I get up, before I open my eyes- I remind myself of my value, my power to overcome adversity, and repeat many times, I can do this, I will do this, I am going to have an outstanding day.
Your mind WILL believe what it hears. Be the first person you talk to and make your day a powerful one. With all the waiting for test results which basically say you will live or die is difficult to endure. I could be drinking heavily or sitting in a dark room (drinking heavily) feeling sorry for myself. Even if there is just a drop of water in the glass, it is still half full.
* The Power of Music - I love my music. Sometimes it is like the song was written just for me for this time in my life. "Yesterday, when all my troubles seemed so far away"-Beatles, "Every little thing gonna be alright" - Bob Marley, "Feeling Good - You know how I feel -It's a new dawn-It's a new day-It's a new life-For me-And I'm feeling good" Adam Lambert version, "Live like you're dying-tell them you love them while you can"..Kris Allen - Tim McGraw version works also..you get the picture. Put these all together on a cd and crank it up - will drive the blues out the door.
* The Power of Writing - When you are writing - a blog, an email, a letter - you are in control of your life, not the clock. Once it clicks, it is like turning the faucet on - it flows. You can get totally lost in your subject - remembering kids birthday parties, the good old days (like the time I partied with Jefferson Airplane backstage in Asbury Park, New Jersey in the 70's). You are there - in the moment - a moment stolen back from the gloom. I belong to an international Tonsil-Cancer forum - full of great people, sharing experiences and being a second family that knows how to talk the talk because everyone of them has had a chance to walk-the-walk. They are there now or have been there and know from the heart what you are thinking.
* The Power of Spiritualism - I would not say that I am a religious person. There are too many bad things that happen to innocent young people in this world for me to fully embrace faith. I am 62, had a fantastic life, few regrets. I would like more time, but have fully used what was given to me to date. I have traveled extensively and have seen so many wonderful sunrises and sunsets all over the world, watched my garden flourish each summer, witnessed my tulips sprout, grow and bloom to not think there is a force beyond my limited imagination. I believe in omens and believe they are in front of us everyday - if we are open to seeing them. I appreciate the communication that I believe was meant for me. That is also reflected in the power of giving of yourself. I spent a half-hour at the Cancer treatment ward at a local hospital yesterday afternoon before my scan - pumping up a fellow Tonsil Cancer patient - just starting treatment. Total stranger. Met on-line in a Tonsil Cancer forum and discovered we were from the same town. Small world. There are people on this forum from all over the world and this guy was my omen. A chance to give back. He was having a radiation treatment yesterday 10 blocks from my office. He and his wife really appreciated me coming by, but the gift was also for me. I didn't think about my situation at all. For those moments, I wasn't thinking about me, my issues, my pending results. Good omen.
* The Power of Love - The best. Being connected to a deadly disease snaps you into a hard reality of your personal value proposition. What do you value most in life or even more than life? The power to love and be loved. I have lots of things. If I don't get the life warranty extension I am hoping for, it won't be the car and the furniture I will be missing. Love transcends all things. I am lucky. Very Lucky. I love my wife, my kids, my extended family, my friends and they feel the same way about me. I know it. I can feel it. My sister has called me and emailed me and text-ed (is that a word?) me twice. That is just today. She sent me the Bob Marley song. The way my wife just silently looks at me with love exuding from just the look. No words. I am a very rich man. I have very little money, but am blessed with the most valuable possession money cannot buy. Love can only be given to you freely. You have either earned it or you haven't. If you don't have that account full yet, start now...you never know when you will have to make a withdrawal.
I still have my anxious moments. I haven't quite achieved Nirvana yet. I do however, have quite the toolbox of power tools to deal with this inconvenient gift of Cancer. I recommend the power of gathering around you: positive people, positive thoughts, the power to embrace the things you can control. Build a good fort, like when you were a kid. Remember how safe you felt in that cardboard box? Its protection only existed because you BELIEVED it existed.
Even a pony in the box tomorrow isn't permanent. I get to do this again in six months and every six months for three more years, before you get a clean bill of health that says you are technically back to where you were before you were diagnosed.
I would be interested in hearing what works for you. Still got room in my tool box for good tools.
well here we go...Taking a barrel of meds, one of which is Readi-Cat 2 (Barium Sulphate Suspension) two big canisters of it - says Berry Smoothie, but not quite teh right description. I am leaving in two minutes for the CTScan.
Here is excerpt from email I shared with another Tonsil Cancer guy I met onthe Cancer Form that is being treated in Sacramento. Went down to say hi - and meet him and his wife at the radiology dept today. They sent me a thank you email.
Happy to meet you...thought it might be cool to see a living, breathing person that made it through to the other side....a visual aid. Happy to apply for the position of guide dog.
Good to see you two - will post the photo tonight - should be home by 8:30p - I have 6 premeds to take - one at 7:30a this morning and the others between 5:30p-7:20p...Blueberry flavored liquid chalk for dinner...........
There are two sets of instructions for the 900ml of liquid, the first page was all about enemas and for the life of me I couldn't figure out while they would make them in blueberry, chocolate (well maybe that one) and banana. As I was pondering the oddity of all that- my wife laughed and started reading the second page for oral consumption. Whew-
Hang in there - eat what you can while you can. Hug everybody. There are only 24 hours in the day...use them as wisely as you can.
Here is the link to the Zero Gravity chair- they are $10 cheaper than when I got mine- best investment I have made in awhile.
