I'm an oral cancer survivor that doesn't fit the "normal" oral cancer profile. I'm always asked if I was a smoker. No, I've never smoked, but I was subjected to many years of secondhand smoke as a child. I am not a heavy drinker. More so when I was younger, but even then 2 or 3 drinks a week and now maybe monthly. I haven't knowingly subjected myself to carcinogens, but then there is the debate with plastic water bottles, charred red meats, and microwave foods including popcorn, etc. There could be some possibilities there, but none of those have enough evidence behind them yet. No matter...I don't fit the profile of an oral cancer patient.
After my surgery at MD Anderson, while sitting in a waiting room, a nurse asked if I would answer some questions for a new study they were conducting. It got rather personal as she began to ask about my sex life and "oral" habits. At that time I was told they were conducting studies to show that HPV (Human Papillomavirus) might be the cause of some oral cancers. They were beginning to see a lot of new patients like myself that didn't fit the typical profile. They also noticed that patients were much younger than they normally see.
For years, ever since I learned of the connection with oral cancer to HPV, I have wanted to write a blog especially for younger people and those that participate in oral sex. Let's just estimate...MOST OF THEM! It's something that MUST be talked about, but is such a sensitive subject. How do you explain that if you have oral sex with a person that has the HPV virus and then kiss during lovemaking, that it is possible to transfer the virus to the oral cavity which could lead to oral cancer? And that person might not even know they carry the virus! HUM...I guess I just did...Well then, years of pondering resolved. That wasn't so hard afterall.
When I try to explain it delicately in public, which I try as often as I can...I usually say, "If you play in the basement and then go play in the attic, you can transfer the HPV virus to the oral cavity." OR "If you travel down South and then return to the North..." Occasionally I get the head tilt and I have to give a more graphic explanation.
Even Michael Douglas can't seem to give the full impact as he eludes to it as a "very common virus, one responsible for the vast majority of cervical cancers" that may be responsible, but doesn't touch on how it's transferred. I wish this PSA was shown more often so people can lean. AND I wish people today still didn't have such a hangup about talking to your children about sex when such important life threatening informationneeds to be passed along. This would be a great time to explain the importance of safe sex practices and the usage of a dental dam.
TALK ABOUT IT PEOPLE!! ORAL SEX + MAKING OUT (could) = ORAL CANCER
I have been growing my hair out since last summer to donate it to Locks of Love. Frankly it's been very hard having it get in the way...long stray hairs everywhere. It kept me pretty miserable for many months, but an event came up this last weekend that I wanted to attend. It was time to cut it off and move into a sportier model!
BEFORE
AFTER!
I hope it goes to good use. Please think about growing your hair or if you already have long hair, have it cut for a good cause. Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis.
A week before my appointment with Dr Otto, the Ear/Nose/Throat doctor at Moffitt Cancer Center I was fighting kidney stones. I've had them before and for many years. Ever since Vicodin was introduced to my medications, the likelihood of noticing them was minimal.
In the past they have always been small and like grains of sand. Still painful to pass, but less noticeable when taking a painkiller regularly for other issues. These were much more intense than my normal stones. Even with the pain medication my lower back flanks felt like I had an elephant sitting on them. A few days earlier I had a massage and had my therapist concentrate in that area thinking it was my standard back pain caused by my compressed lower vertebrae from a long ago fall off a roof. (STOP LAUGHING!) It's actually a pretty funny story that left me with a concussion standing outside in my underwear in a daze...but that's a better story for another day!
A few days after the massage all hell broke loose and the pressure and pain were immense and I had taken my maximum dose of Vicodin. After a conversation with my dietitian who said to drink plenty of water, which I knew, but to also stay way from coffee and tea, something I did not know. Oddly I bought a new Keurig Vue coffee machine for Christmas and had fallen in love with their Southern Sweet Tea. So, I was drinking way more tea than I normally do.
Some of the medications I take require drinking lots of water to avoid these stones, but I have been in a much warmer climate and hydrating is a 24 hour job it seems. To add to that...I really don't like plain water. During our conversation I asked if using a vibrator (NOT THE KIND YOU HAVE IN YOUR NIGHTSTAND!) was a good idea. I have this monster of a handheld programmable heated vibrator that was given to me as a gift. This is not your grandmother's hand vibrator! This is an industrial strength model. I remember when my step-father had stones they dunked him into a vibration tank filled with water...so I thought using this might be a good idea.
The Sharper Image Programmable Vibrator With Deep Heating
As it turned out after wielding the weapon across my back the pain subsided a bit. I shot out a dozen stones over the next few days, more than I had ever seen at one time and figured I was done. Boy was I wrong. The morning of my ENT appointment had arrived with Dr. Otto and I was in so much pain I couldn't even talk without gasping for air as I attempted to cancel and reschedule the important first meeting. We were to discuss my facial issue which by now has been all forgotten as I can only think about giving birth! That afternoon I proudly popped out six little babies...well four little ones and two the likes of which I have never seen come out of my body! AND before any of you ladies chime in with "It can't be as bad as actually giving birth," just remember your vagina is bigger and designed to dilate as one of it's natural functions...my penis is not! Have you seen the size of a Ureter????
Ladies and gentleman, may I present... MY ROLLING STONES!
In case any of you are wondering how these are retrieved...no I did not go fishing! As part of my mountainous medical arsenal I use a strainer for this very purpose. Like any good Boy Scout/cancer patient/should be a real doctor by now must have on hand, ready for any emergency! DAMN I'M TIRED....GOODNIGHT CRUEL WORLD!
Where to start? I had my first appointment at Moffitt Cancer Center with Dr. Raj. I stayed up the night before my appointment to put together as much of my records as I could copy from my online portal at MD Anderson Cancer Center to satisfy the powers that be. After I had finished at 4 AM I looked on the Moffitt patient website to check my appointment and get directions. I noticed it asked me to fill out a questionnaire before arrival. I figured no big deal until I open the page and it was VERY extensive. It took me almost an hour to complete and by now it was 5 AM and I had to get to bed.
Always entering a new hospital facility can be a daunting experience, but this was a rather pleasant one. When you sign in I was amazed by a really cool device I had never seen before that allows the cancer center to track you anywhere in the building. I call it Lojack for patients. It's no bigger than a wristwatch that attaches to your wrist. It's a WiFi location tracking system made by Ekahau. The best part...You don't have to sign in at every station for each appointment. You only sign in upon arrival and then head to the lobby of you next appointment and sit down and wait to be called. I wish all cancer centers utilized this little device. SO COOL...SO CONVENIENT! I'd love to see the tracking system monitors, how it works up close and also wonder how many people it can track and how far. In fact if I had children I'd find a way to connect this to their cell phones for their own safety. I'm sure that's already been thought of.
Ekahau's Location Tracking System
FIGURING OUT WHAT'S WRONG WITH MY CHEEK
Dr Raj is a very kind doctor who listens to her patients. I was very impressed with her. She went over my history and was rather concerned about a few things that as she went on talking about, made me a little nervous. As she explained I grew ever more silent and all I kept hearing in my brain was, "Oh crap! Oh crap! Oh crap!" That's the PG version for those of you who really know me!
My face has been reconstructed and cut up and things added and taken away. I'm like a patch quilt when it comes to my face. I have issues with scarring and this has apparently led to some pressure on the structure of my face, the bones. I was warned from the very beginning that due to the radiation it would be very dangerous to have any kind for dental work or extractions done without the possibility of repercussions in the future. My jaw could actually shatter if someone unfamiliar with the affects of a radiated jaw bone worked on me. This got me thinking I should probably avoid barroom brawls too! I suspected this because my upper teeth are no longer aligned with my lower teeth, yet the bite of my jaw seems normal. I guess I never realized as the skin healed and began to scar and tighten my face that this could also become a problem. As a cancer patient potentially facing death you don't often look too far into the future...you only hope there is a tomorrow.
This problem could also be a product of how I have learned to chew my food again. After I began eating real food after being on a feeding tube 2 1/2 years I had to learn some new tricks if I wanted to eat some of my favorite foods again. This involved puffing my cheeks up with air to move food around or drinking fluids and using them to swish the food around in my mouth. I don't have a very mobile new forward tongue so this can make it harder to get food where it needs to be just to chew. There are times I still have aspiration problems, but not often, so I have to be very cautious to "think" while I chew which is something that most people don't have to do because it is an innate ability like breathing.
For years all food had to be cut into VERY small pieces and placed by fork to the molar area to chew. Any type of food like a sandwich that you would normally just pick up and shove up to your lips had to be eaten this way. Only recently have I mastered sandwich eating the traditional way with great practice and even then my bites are so small it takes me twice as long to finish.
ANYWAY...after Dr. Raj looked everything over including photos I had taken of the face issue the day it happened she concluded that a facial PET Scan and MRI should be ordered to eliminate the possibility of cancer and something new she brought up based on my facial structure and the scaring.
Ever since surgery in 2007 I have had all kinds of skin issues, sinus trouble, problems with my sight, and even some hearing problems. Some might be age and some repercussions of surgery and radiation. Because this anomaly on my cheek might not be cancer, but something as menacing she brought up something I had never heard of before, CSF - Spinal Cerebrospinal Fluid. Basically a brain fluid leak! GREAT now I'm going to lose with smarts I have left and they are all going to drip out of my nose!
Now here's an opportunity to raise some money on EBay. Let's market this a "Brain Drops" my loss is your gain. With just a few drop you too can become smarter than a 5th grader! What? It would help offset all these medical bills!!!
For the last year my nose tends to run even if I attempt minor household takes and even tends to run when I eat...very inconvenient. I had assumed it was just allergies which I've never had a problem with but if I take Claritin for allergies it seems to help. I NEVER would have suspected CSF! Bit by bit cancer steals everything from a person not matter how strong. Though Dr. Raj prefaced this as "the worse case scenario" I was concerned because I had all the related symptoms. So, she scheduled the scans and an appointment with Dr. Otto an Ear/Nose/Throat doctor after the results are in.
LET THE SCANS BEGIN!
I returned a week later to have my scans. I'm always amazed by the equipment and have enough experience enough now to compare them. My PET CT scans went very well but the MRI is always the worst and it was next on my schedule. It honestly wasn't too bad but I still want to know WHY they all don't let you listen to music during these things. My very first MRI gave me head phones...it was downhill after that and I was already spoiled. Nothing has compared since. The day went like clockwork, not one hiccup...no complaints.
YES, that is my alien head on the computer screen! lol
After a few weeks of wondering how many brain cells I had lost to this potential CSF I met with Dr Raj again to review my scans. Straight to the good news...NO CANCER...Better...NO CSF...HOWEVER...what is the problem with my face????? Only answer so far is a maxillofacial sinus problem. As she explained the small nipple like protrusion could actually be a sinus bone. I don't think so because it's seems like soft tissue unless this bone in similar to the cartilage like we have in out nose.
I asked for copies of the scans so I could post them and even had to fill out paperwork for their release, but so far, weeks later, I have received nothing. SO...now we wait for the ENT to determine what the hell is wrong with my face. Still tired...still in pain...AND STILL BITCHY!
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!
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.
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!"
As the moon settles to slumber, the sun arrives to begin anew. I yield to yet another anniversary of sorrow. As the passage of time heals the pain, the memories still flourish within the transition.
