The Radiation and Chemo Super friends.

I just got back from my mask fitting and it wasn't fun at all. As you can see, it goes part way down my chest. It went on wet and got firmer by the second as it dried and molded to my body. 

Even though, I tried to transport myself to a happy place, it was a little too much for me. 

I wasn't allowed to open my eyes, or mouth during the entire process, which with CT scan lasted 20 min.

It felt like an hour.

Im so thankful it's over..  

Below is a picture Sheila snapped before having to leave the room.  Beneath it are pictures of the radiation and chemo friends that are guiding me through the rest of my journey. I'll still see Shonka and crew at the clinic once I'm through with treatment, and every 3 months for follow up appointments.

Here is my Chemo MD, Dr. G, who I met 2 weeks ago.  She is amazing and was so warm and welcoming to Sheila and I.  She's the best! The camera picked up what I believe is her aura, its blue and beautiful, just like her. 

Finally, the members of my Radiation therapy team..From Left to Right, Dr. Wilson, me, and Dr. Read.

I am so thankful to be receiving treatment at UVA. I can't think of any other place I'd be. 

Back to UVA!

Heading down to UVA tomorrow for my follow up with Dr. Shonka, Nguyen and the team. 

Afterwards, we'll grab a bite at our favorite mexican restaurant Guadalajara.  Sheila's Paw-paw wants to hit one of the other locations. (they have 5 in the area)

 I have to admit, the last time we ate there, our server seemed like she was somewhere else, like in a galaxy far, far, away...

Then, we'll scoot over to see Dr. Read and I'll be fitted for my mask and will receive a CT scan before heading home.

Hoping to run into Dr. Levine so I can get a pic with him.  He's like a unicorn in a sense, magical and you never know where he'll be from one second to the next...

Thanks for keeping up with me!

:)

T

You know what, fuck that...

FUCK YOU CIGNA. FUCK YOU. FUCK YOU. FUCK YOU. FUCK YOU. 

I DIDNT HAVE A PRE EXISTING CONDITION FROM APR 2011-JUNE 2011. 

I DIDNT GET CANCER UNTIL 2012. WTF IS YOUR DEAL??!!  

YOU DON'T WANT TO PAY ME FOR A BENEFIT THAT I PAY INTO ALL YEAR LONG?  

WE'LL SEE ABOUT THAT...

YOUR LACK OF COMPASSION REEKS LIKE THAT OF HUMAN DECOMPOSITION. 

AFTER I TELL YOU I HAVE TO REALLY WORK TO FILL OUT YOUR FORM, YOU'LL GET IT FAXED IN THE MORNING, YOU MEET THAT WITH A SHITTY "OK" AND HANG UP. 

FUCK YOU. YOU HEARTLESS FUCK.

WE'LL SEE ABOUT THAT....

(THIS ASSHOLE, DIDNT EVEN TELL ME WHEN HE FIRST TALKED TO ME, THAT I WAS GOING TO BE "INVESTIGATED" WHAT KIND OF CUSTOMER SERVICE IS THAT??)

First shave in a month!

Yesterday I felt safe enough to trim down the jungle of growth that took residence on my neck and face. Thankfully, the guards on my clippers glided the vibrating blades across the scar on my neck.

I still felt a little uneasy doing it, but took my time and went slowly over the area. 

It didn't turn out Picasso-like, but none the less, I got most of it down. 

Later this morning after my PT, I'll do another run and might try my razor and shaving cream. We'll see how confident I'm feeling at that point. 

I'd like to have a lot of it tamed before my follow up appointment on Thursday with Shonka and team, and then my mask fitting/CT sim. 

Yes, I deleted my last rant against Cigna...After talking to my wife last night, I came to a realization that this is the shit-storm process I have to submit to and have no real choice in the matter. 

It's just the redundancy of paperwork that is so aggravating. I've probably signed the SAME Hipaa form about 5-6 times now......(rolls eyes, sighs, and am moving on..) They want to talk to UVA after EVERY appointment...By all means, have fun calling them for the next 6 weeks, bastards! (LOL!!) 

I'll have my Social Sec disability interview next Tuesday and can't wait to be trapped on the phone for an hour. (insert sarcasm) 

The list of information I have to compile is quite outrageous...Especially considering I won't be out for a full year. As soon as I am ready to go back to work, I'll end up canceling this process for SS disability.

• Need all doctors treating since your date last worked-doctor’s name, addresses, phone number’s, and first, last, and next doctor’s visit.
• If you have been in the hospital since you stopped working, we will need the name, address and phone number of the hospital and the approximate dates you were there.
• A list of all your current prescription medications and the doctors’ name who prescribes each medication.
• Your Work History for the past 15 yrs – Job titles, job duties, approximate dates job titles were held, and current employer’s physical address.
• A copy of your W-2 from last year.
• A copy of a recent check stub from your employer or approximate gross earnings until date last worked.
• The approximate amount of Short Term Disability/Long Term Disability that you have received.

• If you received any sick pay, vacation pay, bonuses or commissions after the date you stopped working, we will need to know the approximate gross amount of money paid to you.
• If you are currently married we will need your spouse’s name, date of birth, social security number & date of marriage.  If a previous marriage ended in divorce and lasted less than 10 years, we will not need this information.   If you were married over 10 years and it ended in divorce, please provide your ex-spouse’s name and approximate dates of marriage & divorce and date of birth or approximate age.
• If your spouse is 62 years or older and receiving retirement benefits, we will need their monthly benefit amount. If your spouse is currently working, we will need their annual earnings.
• If you have any children under the age of 19 and still in high school, we will need the child’s complete name and date of birth.
• Do you have any dependents that were disabled before the age of 21? If so, you will need the dependent’s full name, DOB, and SSN.
• If you have ever received Worker’s Compensation benefits, we will need to know the approximate amount paid and approximate dates when benefits were paid.
• If you have received any other type of public benefit since you stopped working (state disability, public assistance, unemployment, etc.) we will need to know the approximate amount that you received and the approximate time frame you received that benefit.
• If you have ever served in the military we will need the start and ending dates.
• If you are receiving VA benefits, we will need the monthly amount.
• If you were not born in the U. S., please have your citizenship papers/naturalization papers in front of you for the interview.
• Have you filed for Medicare?
• Please have Checking/Routing number for Direct Deposit

I can't wait to get started with treatment, I am still in some nerve pain, but it's more manageable with the meds I'm on.  The PT is helping me too, I can tell. 

woo!!

Swinging at a curve ball..

Sometimes life throws us curve balls, and I just had one pitched to me.

I just received 3 appointment notices in the mail today for 8:15, 8:40, and 9:15 for September 11th, on different floors in the Cancer clinic where I'll be receiving Chemo and Radiation treatments.


I phoned the RN in the Rad dept who is assigned to me to find out what was going on. Her name is Mary and she is a real sweetheart who cares about her patients. 

Because of the labor day holiday falling on a weekend this year, I won't get to begin my radiation/chemo treatment until the 11th. 

Mary told me they want to make sure I am 100% healed, because if I am not, the chemo and rad will really slow that process down and it won't be good for me. 

Sheila tried to warn me this might happen, but I just figured with Tues-Fri still in that work week, we'd have time to get the show on the road, as the saying goes...

I have to honestly admit, it all caught me off guard and I did breakdown.  : ( 

Mary told me it would be ok, and soon it would be over and I would be able to forget all of them, forever.

I told her through tears that I never wanted to forget any of them, because they've taken such amazing care of me.  

(Especially not judging me for my appreciation and collection of tattoos. I can't harp on that enough. They really do love you unconditionally at UVA health, whereas others have taken one look and out come the gavels of judgement!!)   

I thanked Mary, got off the phone, grabbed my Yoga blocks, and did my breathing technique to calm myself. 

It really helped. Within 2-3 minutes, I felt a lot better about things.  : ) 

God bless!

An amazing family.

I received a wonderful gift yesterday, and these cards made with love came with it. I am so lucky to have such an awesome family.  :) 

I head back to UVA next week for my follow up appts, CT scan and mask fitting.  I'll have more to share then. 

God bless! 

 T

Dr. G and the Chemo team.

Had a nice meeting with Dr. G, the head of the Hematology/Oncology dept at UVA. She was a very nice Doctor and so welcoming to me and Sheila. I gained another fan of my tattoos and of the artist that donned my body with them, Mr. Kenny Brown Esq. aka Dreamboat aka Woodbooger. 

 She informed me that I'll be getting at least 2 doses of Cisplatin a chemo drug via IV. If I am up for it, I'll get one more at the very end.  We'll see about that last one..I might just soldier up and accept it to be rid of this monster. 

Dr. G went over the side effects with me and how the doses will work. I'll get a bag of regular fluids, then the Cisplatin, along with something for pain and nausea. She said they've come a long way with the Chemo drug and hopefully I won't get sick at all.

There is a chance though, I'll get a fever. If I do, I'll need antibiotics, which will mean, another case of the Thrush.

At least this time, we'll be ready for it and can keep it at bay while I finish the antibiotics. Im hoping I won't get the fever, but knowing me, I probably will.   We'll deal with that later. 

The first day of rad will be a long one, as I'll go for the rad, then have my first chemo session. I can imagine it will feel like I've been hit by a train, but we'll stay positive and will deal with it as it comes.

I am so anxious to get this over with, I hope the 6 weeks flys by.  I really do. 

It will be hard not having Sheila there with me. I know I can make it, but man, it's going to fucking suck not having her around..

At least, she'll be able to take a week off near the last part of it, to be with me and take care of me. She takes such awesome care of me too, I am so lucky to have her. 

I am still sore and relaxing from the neck surgery. At least I am sleeping a little better though. That helps. 

Going back to see Dr. Shonka on the 30th and have a CT scan with the rad group, in addition to being fitted for the mask I'll wear during radiation. Im not too afraid of it anymore either.

I have a lot of strength in me to continue and finish this fight. This Cancer has taken a lot of things away from me and Im real pissed about that.  Im using that energy to toughen up and FINISH THIS BITCH.

More soon, god bless and thanks for continuing to follow me.  

Im half way out of hell and can't wait to get to the other side.   Oh, I'll be posting pics soon of the amazing people at UVA that have been caring for me. I have a pic of Dr. G and will capture the others before posting...more on that soon! 

T

Final post surgery pathology report!

I received a call yesterday from Dr. Nguyen regarding the tumor board meeting and my pathology report. I enjoy speaking to her, she has an excellent bedside manor about her and I can tell she really cares about me. (they all do, I just hear from her more via phone..)

There was excellent news! The 2 nodes that were stuck together and since removed were in real bad shape, but no other nodes tested positive for the Cancer spreading!!!

 :)

 A huge relief washed over me like I can't even explain.

 I have so much to look forward to with being a new Father come Feb 2013 and can't wait to be able to take care of Sheila and our first child.

I go back on 8/16 to the Hematology/Oncology dept, to meet Dr. G to discuss the chemo regiment.

more soon and Thanks for reading!

 God bless you all and peace.

 T

Update on yesterday's visit to UVA and a race against Cancer!

Yesterday we spent all day at UVA, bouncing around between appointments. Sheila was a real trooper for me and passed out for the night, an hour or two after getting home.

I learned that I might need a few doses of Chemo after all. 

Dr. Read the head RAD/ONC MD, with Dr. Wilson, told me that there was a study done by Univ of Washington in Seattle, that 100 cancer patients took part in. Basically, 2 out of every 50 that declined a few doses of a certain Chemo therapy, ended up having their Cancer return later and it was worse for them.

I told him, I have so much to live for with our first child on the way. I need to be able to take care of Sheila once she gets to her 3rd trimester and that I am only taking this Cancer ride ONCE.

I told him I was ok with the Chemo, if it meant this monster can never come back and haunt me. 

The pathology report will be ''broken down'' by the entire team treating me this Thursday. Dr.s Levine, Shonka, Jameson, Nguyen, Read, and Wilson from the Rad dept. will all be present at this meeting.

(I wish I could be there too..I think it would be interesting to hear them discuss my case) 

Dr. Read was the last appt for me yesterday, but knows I am in full support of his decision and will communicate that to the others.

Granted, I was upset at first when at my earlier appt Dr. Nguyen and Shonka mentioned the slight possibility of Chemo. 

Once I was with Dr. Read and Wilson, I felt more calm about the idea upon his counsel to Sheila and I.  

I took one look at my wife and knew in my heart, it had to be done. I don't want to have to repeat this journey ever again, nor put her through the emotional throes of it again either. 

Im still healing from the dissection and was given the DVD of PT therapy that survivor/volunteer Larry created. I'll begin those exercises today.  I go back to UVA on the 30th for my follow up and will then get a CT scan and be fitted for my radiation pet mask. 

Onward and forward into battle!!  LET'S DO THIS. 

P.S. An incredible friend of mine named Thomas is running in my honor for this year's DetermiNATION race sponsored by the American Cancer Society.  If you have 1 dollar to donate, or 5 dollars, or whatever you can give, to help further the destruction of this horrible disease, please donate.  

Your simple gesture of kindess and love, will go a long way to ensure that a child, teenager, or adult gets to make it to another Birthday. 

 Here is the link to his page, its tax deductible too.  He doesn't race until October, so there is time. 

Please if you can, donate. Even if its just one dollar....that one dollar will go a tremendous distance. 

http://main.acsevents.org/site/TR?px=29856259&pg=personal&fr_id=47552&fl=en_US&et=2UtS_mE3i8SN30rwXxQk5w&s_tafId=975667

 with love and more soon, God bless!
  

A big day ahead of me..

Tomorrow I've got a big day ahead of me back down at UVA. 


We'll hit the dental dept first at 9am to pick up the appliance I was molded for a few weeks ago. I'll use this to soak my teeth in a special rinse each night for 15 min, once I start radiation to protect my teeth from breaking down. I've been great about my oral hygiene for years now, so I am keeping my fingers crossed.


Afterwards, we'll head over to see Dr. Shonka for another follow up and he'll have the pathology results from my neck dissection surgery. I know I'll get good news, I just know it! 


Then, we'll head over to Sheila's grandparents to relax since my Dr. appt is at 11am, and I'll have a light lunch before heading back to UVA at 2pm for my appointment with Dr. Reed and the Radiation Oncology dept.  I'm glad Sheila will get to meet this part of the team finally too. They're amazing people and I can tell they care a great deal about me. Dr. Reed came up with the "Tomo method" of Radiation therapy. He's a brilliant and blessed man. 


I think I am being fitted for my pet mask, so I am getting myself prepared mentally for that and am thinking nothing but positive thoughts. 


A good friend of mine told me yesterday, "You're going to be so much stronger when you get through this.."  


He was right and I am glad he reminded me.  Because I am. 


Im still pretty uncomfortable with the nerve endings ''waking up'' and am about out of the pain control they wrote for me on Sunday July 29th. 


(it would make your head spin if you knew how many pills I've gone through, to keep the pain at bay. The shit is serious people. To quote my friend Larry "It's Cancer, not the flu...") 


 I only have enough left to make it to tomorrow. My muscles still ache and my collar bone, neck and shoulder are pretty swollen still. 


See you on the other side...when I get back. 


Wish me luck!  :) 


p.s. Each day i am reminded and amazed at the people i know, the friends i have and how their love knows no bounds. wether we've ever met or not, know that you mean so much and that your energy, vibes, strength, love and caring are safely tucked away inside my <3.  I am so blessed and fortunate for each and every one of you and I thank God for the routes my life has taken. When I trace each route back to the beginning points, all I can do is smile and say Thanks.

More breakthroughs!

Today was a better day for me in the arena of swallowing and eating.


It seems in the past 24 hours, my body has started to readjust to swallowing. Its like my body is adjusting itself/me, and helping to train me to swallow hard again, on its own.


(meaning, just as you grab your bottle of water, fork, spoon, or handful of food, and its down the hatch nice and normal, without a thought, effort, or feeling..)


It feels great.  I am able to put a little more on the fork or spoon now and am gaining tremendous confidence with each bite. 


Thank you God!!  :) 


I still will tilt my head to the Left for safety, but during dinner tonight, I found myself getting more comfortable with getting back to a normal swallow. 


My mashed potatoes just got a little more exciting too, by adding some shredded beef. It was like the first time I've had a complete meal in over a month. 


I forgot how harmonious the flavor that is paring meat with potatoes. 


It was like heaven. 


Had a couple of strawberries this morning for the first time too.  I forgot how refreshing and clean their sweet flavor was. 


 It took me back to when our Nana would cut and prepare them for us as kids. 


I think she would add a pinch of sugar, or powered sugar and they would soak in this sweet nectar for a night before we'd destroy them.  :) 



 I even had my first piece of toast with butter for breakfast, and was able to get through it just fine. 


 Slow and steady wins the race! 

Love and a Prayer, all the way from Japan.

A friend of mine named Benko stopped by the Harajuku Meiji Shrine in Japan and left a prayer tablet for me and one for his 96 year old Grandfather who just learned he might have lung cancer. 


 Another special moment that pulled on my ♥ and gives me strength. 


 I am praying for your Grandfather, Benko and am sending him all my energy and vibes.


 I humbly ask my audience, to offer his Grandfather a prayer too.   


Sheila asked me to thank you Benko, and sends her love.

Sensations of pain.

Theres this sensation of pain that washes through the nerves on the side of my neck, from my ear on down.


 My doctor, told me it would be normal, considering what I went through with the neck dissection.


 Sheila thinks it might be the nerve endings 'coming to' from the trauma they endured. 


 I dunno..I was hoping to ween myself from the pain control, (haven't needed any since 2am yesterday) but I have to go back down the rabbit hole. 


 I am 8 days out from surgery, and need to remain patient and focused. The pain in my throat from the tonsilectomy has really cut back a lot. Swallowing still remains to be a challenge, but each day gets better. 


 I couldn't be more thrilled!  


My voice is coming around too. :)  Talking for extensive periods of time wears me out still, Im ok with it though. Being at home alone, gives me ample time to rest it and work on my tongue-sweep exercises.


During parts of the day my voice will sound really good. Then at other times, the saliva and or mucus gets kicked into overdrive and the quality of it begins to fail. I sound like I am part deaf at this point, with a lot of saliva moving around. 


Things turn into a rinse and spit marathon at this point for me. However, I am able to keep hydrated which is vital to recovering and obviously health. Yes, I do drink enough water/fluids throughout the day. I know the signs of dehydration (dizziness, headache..) 


I remember a football coach telling us in High School to not drink too much water during practice. His mantra was, "Your mouths are the only thing thirsty, not your stomachs! If you swish and spit, you'll be fine!!  Yes, do drink some water, but not enough that you fill up on it and begin to cramp!"


He couldn't have been more right.  


Thanks Coach, I am glad I held onto that advice. It's really helping me tremendously. 


Hope you all have a nice weekend, more soon.


  

Sleeping soundly!! :)

Sleep is something our bodies and minds need to be able to function the next day. We can't ever catch up the sleep we lost either. Its one of those things that isn't possible.  


Last night I was able to sleep soundly, all the way through the night, for the first time since my last surgery on the 27th.


Sheila said that she was worried I wasn't breathing, since I didn't snore or move around much. She kept checking me to make sure I was still breathing, god bless her.   :)


I only woke once during the night and that was because it was time to clear my throat of the garbage that collects back there. 


It felt so good to be down and out, from around 745pm until 4am this morning.  Once I cleared myself out, I passed out again until 645am. I did move from our bed to the couch, when I woke, just as a preventative measure, in case I did start a coughing-hacking fit. 


 I thanked God for helping me to rest w/o issue last night. I feel so good right now, so rested. 


 I can't even describe it. 


I am thankful, Sheila was able to get some decent shut-eye too.  She didn't have to employ her ear plugs last night and that's progress for sure.  Guess we'll see if we can keep the streak going.


more soon and thanks for keeping up with me.


:)   

: /

Its been pretty shocking to hear how many people in my age group that I know either personally, or through another mutual friend, that are dealing with their own Cancers. Its terrifying actually.  I send them my love, strength and energy.


I don't understand why there has to be Cancer.. What's its purpose aside from causing heartache and suffering? 


When will we eradicate Cancer from the fabric of humanity, from our lives?  Why haven't we already? 


I mean seriously, what in the hell is taking so long?  How many more have to suffer to live?  Or, live to suffer?  Gosh, its sad..


How many more will have to suffer through treatments, or even worse, death? 


I know I am blessed and fortunate to have made it this far.  


I have moments through the day, where I am feeling great and nothing can stop me.


And then there is the other side...At least once or twice, shit, who knows, three times during the day, where it all comes crashing down around me and my flame, starts to flicker for a moment.


During that moment, I fear the next steps. I know I can't let that fear get the best of me. I have to over come it, see past it for what it is and know that I will make it to the other side.


It just gets hard sometimes.


Im so lucky to have God, Sheila, my family, friends and those I don't know supporting me. It helps when I need to pick myself up off of the ground. I just wish I wouldn't 'fall down' as often as I have been the past week. I have so much to be thankful for and am. 




I know there are others out there who are in worse shape than I am. It doesn't mean it makes it any hard or easier though.  I hate when I start to feel selfish. Its such an ungrateful feeling, I want it out of me and am sorry it ever entered my train of thought in the first place.


Im about 1/2 way through this nightmare. I know I'll make it. I must be more strong. I must be more patient.


Thank you for continuing to be an audience. I really appreciate your eyes, your love, energy and vibes.


 Let's send them around the world, to the rest of humanity, the others like me who are dealing with their own Cancer. 


 more soon, God bless!