WELCOME!

Binvenidos! Bienvenue! Benvenuto! Willkommen! Aloha! Irashaimasu! ようこそ! Welkom! Selamat datang! ברוכים הבאים! Velkomen! Witajcie! वेलकम Bemvindo! Dobro pozhalovat'! Ласкаво просимо! Mabuhay! أهلا وسهلا! Maeva! Yin dee! Isibingelelo! Croeso! Bine ai venit! Witamy! 歡迎!Maligayang pagdating! Vítejte! ยินดีต้อนรับ Fáilte!
For first time readers...my journey begins here: THE VERY FIRST BLOG POST (CC1)

Meaning of life

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

Thursday, March 21, 2013

SOCIAL MEDIA SAVES THE DAY

Get it! Get it! Good boy!

This last week I have felt like a dog chasing his tail. My primary care doctor gave me a referral to see Dr. McCaffrey at the H. Lee Moffitt Cancer Center, who is a Professor and Chair of the Head and Neck Department because the issue from my cheek might be cancer related. My doctor was a fellow who studied there and he thought there should be no problem getting me in.

So...I called to book an appointment and the chase began. I was told that they would not book an appointment unless I had an "active" cancer or tests results showing such. I explained that I have been a cancer patient with MD Anderson since 2007 and though I don't know if my cancer is active, I'd like to establish myself with doctors there. Since they would not take me at Moffitt I was told I could book an appointment with Dr. McCaffrey off site at USF. Humm...So I can't see him at Moffitt unless I have active cancer, but I can see him at USF to determine if I have active cancer so he can see me at Moffitt? Get the tail...get the tail...get it!!!


OK book the appointment and the soonest I could get in was April 26. I'm not happy, I'm in pain, and by next month this issue might be healed up. What happened next I could not have ever imagined. Since I use a lot of social media I decide to post my distress on Twitter: "@MoffittNews VERY DISAPPOINTED I am a patient with MD ANDERSON and have a referral from Primary Care and can't get in #gettingtherunaround" 

Within hours I received this tweet: "MoffittCancerCenter ‏@MoffittNews @DoctorSwill We're so sorry to hear that. Can you direct message us with your contact info? We'd like to look in to this for you." I send my information and the phone rings with an understanding person taking my information to book my appointment at Moffitt. I was able to book an appointment only a few days away with a different doctor at a satellite  Moffitt Center. I didn't have to see Dr. McCaffery, and since I could not see him until late next month, I booked the soonest appointment.

I never, not in a million years, would have dreamed that Twitter had more power than a doctors referral, especially a referral from a doctor who studied at the hospital! GO TWITTER!

The next day the head administrator for Moffitt called me to see if I still needed some assistance. He said it was his day off and there was some communication going around about me and he wanted to make sure it was resolved. I COULD NOT HAVE BEEN MORE IMPRESSED!

I was so grateful and relieved and thought we were done....my bad. When I hung up the phone it dawned on me that the person who booked my appointment for 1:40 PM on March 19 promised to send a verification email and I had not received it yet. So, I called to ask about it and was told they had no record of me...at all.

After some further confusion we start again. Since the 1:40 appointment was given to someone else, I was booked at 2:40 and then I had to give all my information all over again. She said I need to bring my records from MD Anderson. I explained I don't think I can have them in 3 days, I'll do my best.  I'm told it's more important to show up for the appointment and the records could be ordered. So... I don't worry. Ahh...we're done right?

WRONG! The phone rings the day before my scheduled appointment and I'm told I can't come in without my records. WHAT? I explained what I was told when the second appointment was booked and again I'm told I cannot be seen without my records in hand. Now I'm pissed.

Back to bitch on Twitter, along with a phone call to the head administrator and here we go again. Get the tail...get it...get it. Round and round we go and the dust clears and I'm told...just come in we'll work it out.

I've heard a lot of great things about Moffitt. A neighbor went there for her breast cancer and was very happy. You all remember Bob Pemberton, my hero, the brave man who with his last breath helped me write the three part - Spotlight On Cancer "Dead Man Talking" leaving a powerful message here on BTGD for all to learn from? He too had great things to say about Moffitt as he battled his own tongue cancer. That was the most powerful thing I think I've ever written here.

I'll reserve my opinion for now. If getting an appointment is this confusing, I'm worried about what is to come. I will say, all but one person I spoke with went way out of their way to help resolve the problems. That in itself is a big plus in my book. There will always be problems, mistakes, and miscommunication, but the proof is how they are resolved in the end.

A HUGE THANK YOU FOR ALL WHO HELPED GET THINGS ON TRACK!

Peace B


Stay tuned for my first H. Lee Moffitt Cancer Center visit and a new battle that might begin!

Wednesday, March 6, 2013

IT'S OFFICIAL...

I AM SO TIRED OF DEALING WITH THE AFTERMATH OF CANCER! 

For years I have dealt with shrapnel coming out of my neck. If you are a regular here, you've read the posts. It seems that the leftover bits of Doppler wire that was placed in my neck during my surgery in 2007 are being rejected by my body years later. The wire was placed to allow a Doppler ultrasound machine to check the blood flow to the newly placed radial forearm free flap taken from my forearm that was now in my mouth replacing my cancerous severed tongue. This was necessary because if the blood supply stopped the new section of tongue (radial free flap) could die.

When the wire was no longer needed the doctors just yanked it out. I remember thinking how odd that was to just pull. I even questioned the doctor about it. I felt the wire snap and was told that it would heal and any parts remaining would not cause a problem since they were made of a surgical grade material. Well I can tell you that's a load of crap! My neck has NEVER fully healed.

For years and up until last month, SIX years after surgery I still have small bits of wire making their way out of my neck. The first time it happened, I felt it and thought it was a stiff stray hair. (Pulling Hairs) Since most of the hair on my face that was subjected to the radiation field is gone now, I thought I'd just pull it out with tweezers. So...I tugged. One small problem...this little "hair" was lodged in an artery and wasn't a hair at all. It was in fact a left over bit of Doppler wire. When I yanked it out I had a nice stream of bright red blood that shot it's way across the sink and ran down the mirror. The pumping blood looked pretty cool for a moment until I realized the severity of the situation. Well that was a fun night. Last month another small piece made it's way out and once again my poor ravaged neck is beginning to heal.

This all came out of my neck, one piece at a time,over several years

Now if that's not enough...many of you know I have been dealing with an "infection" on my cheek for years. At least that is how it has been treated. Every three or four months for years this bump rears it's head and the doctors throw antibiotics at it and it goes away for a few months. Guess what....IT'S BACK and it's most likely not an infection and probably never was.

Dr. Kim who was at MD Anderson began the antibiotic regime, I can't recall how long ago, but years. And even though I have had countless CT scans and MRI's nothing has been brought to my attention that this might indeed be cancer. It's possible that this could have been a result of all the radiation to the head and neck. I took 60 grays (gy) over a six week period near this area after surgery. (Radiation Dosages)

When this thing rears up it's painful, but now the pain shoots all the way up to the back my eyeball like a bolt of lightning. On my last visit to my new primary care doctor he also prescribed antibiotics. I took the 7 day supply and asked for another week because it still looked puffy.. I think the second was a 10 day supply and he used a different drug in case the "infection" was resistant to what Dr. Kim had prescribed. It seemed to heal up, but a week after finishing the second round the lump was back and this time it popped like a grape. The skin pealed back and I was left with a dangling thing and a very bizarre knotted lump. The dangling thing is still in question, but appears to be a blood clot. It has a vein running in and out with a small sac in the middle. Even more gross is the knotted lump left on my cheek that if touched I feel it at the back of my eyeball.

Blood Clot removed from cheek
Because of my new insurance I can no longer go to MD Anderson since they are "out of network" but I have a few other options. It might just be a lump that grew around the suspected clot (a mass of nerves) or it could be that the cancer has come back. I'm not thinking cancer only because this has been in the process for years and it's not very big. Painful? OH HELL YES!

I'm not expecting this to be serious at all, but I am SO TIRED of fighting. Life doesn't seem to get any better. I know I should be so grateful. I can eat, speak, drink fluids. I've been off the feeding tube for years. I can walk fairly well, my eye sight is good after the cataract surgeries and I have a wonderful puppy to keep me company, but I'm still depressed...tired of fighting...tired of this kind of shit happening and wondering when will it all end.

There comes a time when a survivor must think... I won the big battle, but the little ones keep coming. Is it worth fighting if there is no end in sight? I should be grateful. I am one of the lucky ones. I know this. I've been saved, but what is the real cost and how much can one person take? Sometimes I question the reason for fighting so hard just to have your quality of life drastically diminished. Living seems to come at a great cost...at least to me anyway. Cancer doesn't just attack the flesh, it tears you apart emotionally, gradually beating you into submission.

I'm tired of being in pain. I'm tired of wearing bandages. I'm tired of looking ugly and people staring and asking questions. I'm tired of people saying "I'm sorry." I'm tired of all the drugs. I'm tired of doctors and nurses and needles and tests. I'm tired of coffin like MRI's, CT scans, and X-rays. I'm tired of talking about cancer. I'm tired of people treating me like I know nothing...that I'm just a sick old man. I'm tired of not being happy. I'm tired of not wanting to go out in public because of all the above. I'M JUST SO F'N TIRED!!!

And I'm probably a little bitchy too...

As I finish this post I hear that Valerie Harper has three months to live from terminal brain cancer and once again I am humbled. It sounds like she is taking the news gracefully. The world's Rhoda Morgenstern might not have much longer to live. May she have my kind of luck and be around for a long time.

Hello? HELLO? This is Carlton, your doorman. I just want to let you know there's a ton of people in the lobby that just want to say, "I LOVE YOU RO!"

Peace B

Words To Live By:

"The best way to find yourself is to lose yourself in the service to others." -Mahatma Gandhi