The Cancer Chronicles 38

Fly Me To The Moon!

From the mind of a cancer patient.
Well here we go again. It’s back to MD Anderson for my semi-annual check-up. Any cancer patient will tell you this can be extremely stressful, knowing you’re feeling well, yet tests might prove otherwise.

I always enjoy flying, being among the clouds. It gives me a feeling of invincibility, that “King of the World” feeling. I sit and watch the clouds wisp by, fixated upon the landscape below and the world doesn’t seem so big anymore.

Today, butterflies fill my stomach as I eagerly pray my cancer is still in remission and that I’m still winning this battle.

While in the airport terminal, I await my chariot. I have time enough for lunch. LUNCH! OMG! LUNCH! What a concept: To sit down and enjoy ones self over a meal and relax. There was a time I didn't give this a second thought. But now, having lost my tongue to cancer and not eating for two years, this is a triumph! For lunch: a single Crab Cake with Rémoulade Sauce and ice tea. Just perfect! I am humbled and appreciate every bite. I only wish I could lick the plate!

As I board the plane, I get that feeling like you do when the roller coaster hits its peak and it's about to plummet. “Here we go.” I think to myself. This time, will the cancer be back or will yet another victory be won?

Once in the air, the soft billowy clouds bring peace. A few hours and I’ll be in Houston to bring my worries to a close. Soft drinks are being dispensed and I'm handed pretzels. A little bag of teeny tiny sticks dashed with salt. My heart stops. My breath tightens. "Can I eat these?" I ask myself.

I haven't had pretzels in years. In fact, I really don't like them. So you're probably thinking..he put them down and didn't give them a second thought. BULLSHIT! I snapped open that microscopic bag and proceeded to eat them one little one inch stick at a time. Had they been any bigger, I would have had a problem because they just sucked up my saliva like a sponge!

With a smile on my face, I washed down each stick individually with a swish of water. I felt a tear form in the corner of my right eye. As it slithered down my cheek, the flight attendant asked if I was alright. "Life couldn't be any better right now," I said with a wink, wiping the wetness from my face.

I plugged in my headphones and on pops some of my favorite music pouring into my ears. It’s the big band swing era. The days when huge orchestras and big brass sections concurred the airwaves.

I drift off to a half way place. Not awake, yet not asleep. It begins…more like a hallucination: The music soothes, I’m Singing in the Rain. I’m dressed in a trench coat, proper chapeau, umbrella, and splashing my way down the street kicking at the puddles with my graceful stride. You know, like that famous scene with Gene Kelly.

I’m singing in the rain
Just singing in the rain
What a glorious feeling
I’m happy again
I’m laughing at clouds
So dark up above
‘Cause the sun’s in my heart
And I’m ready for love!


Without a hesitation “I’m Up A Lazy River” feet dangling in the cool refreshing water, fish nibbling at my toes, sun drenched in a bathing suit.

Up the lazy river by the old mill run,
The Lazy, lazy river in the noonday sun,
Linger in the shad of a kind old tree,
Throw away your troubles, dream a dream with me.
YEAH BABY! Sock it to me mama!



From that lazy river I slip into my tuxedo with Frank, the Chairman of the Board. I’m transported weightless, drifting effortlessly, as I sing among the stars. I rest upon a cloud while being drenched in a massive lunar light:

Fly me to the moon
Let me play among the stars
Let me see what spring is like On Jupiter and Mars
In other words, hold my hand
In other words, darling, kiss me


I drift off to sleep on a billowy white cloud, while a little cricket whispers secrets in my ear:

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind.
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true



SNAP, CRACKLE,AND POP!

I'm jolted back to consciousness...

"Ladies and Gentleman, please return your tray tables and seat backs to their full upright position. We will be landing in the Houston area momentarily. Flight attendants, prepare for arrival and cross check."

WOW! What a rush that was…but we just left the ground? I feel like I’ve slept for a week with a song in my heart and a spring in my step!

Tomorrow's the big day!

Peace
B

The Cancer Chronicles 37

This Is The Moment!
April marked my two year anniversary of losing my tongue to cancer. My, how time flies when you’re having fun! Since then, I was relying on a feeding tube for all my nutrition. If you are not a regular reader, you will find how grueling it is to live with and the anguish it causes in The Cancer Chronicles archives.

By December 2008, I began eating more solid foods. I returned to MD Anderson for a check up and everything went well. My scans were clean, no sign of the cancer’s return and my doctors were happy with my progress. My speech was becoming clearer and I had an appetite like never before.

In April 2009, TWO YEARS after losing my tongue to cancer, I was able to eat again without the aid of my feeding tube. Foods I was never able to eat post cancer were now being chewed with caution.

I guess you could say, this is my "new normal." I really hate that term. So many cancer patients use it. Nothing in my life has ever been "normal." Besides, what measure do you use to determine normal? THERE IS NO NORMAL! It just is what it is. Life evolves. This is MY evolution. It's not always easy. I still become exhausted. I still have a lot of jaw pain associated with eating. Side effects courtesy of the radiation, I assume. Some foods are still too much work and not worth the effort. What I can eat, I savor every moment!

One evening I was famished. I needed a soft variety of foods. I thought seafood would fit the bill. Ummm...that sounds perfect! It was time to go public with this voracious appetite! I treated myself to Red Lobster and consumed “The Ultimate Feast” consisting of: Fried Shrimp with Tartar Sauce, Snow Crab Legs drenched in butter, Shrimp Scampi swimming in garlic butter, and a Lobster Tail, yes slathered with MORE butter, along with a LOADED baked potato...OK MORE butter, DOUBLE BUTTER DAMMIT, and a salad with a ton of Ranch Dressing, no butter. It took forever to finish.

Just because I can eat again, doesn't mean it's not difficult. I felt like a fat cow and when I finally returned home, I buried my face into TWO pieces of Carrot Cake. I was on a roll and ready to try more difficult foods!


THE ULTIMATE FEAST: I can't believe I ate the whole thing!
My first bowl of popcorn!
I even ate my nuts! I devoured an entire ONE POUND can of Macadamia Nuts in one sitting!

Now, the big question… When does the feeding tube (Mic-Key Button) come out? I asked my doctors in December, but they felt it was too soon. At that time I was still relying on it about 25% of the time. Today, I can eat a full meal that sometimes needs to be modified. There are still difficulties and there probably always will be. Pain and the lack of saliva are my two biggest issues at the moment.

As months passed, with each new food: My first popcorn, my first pizza, my first steak, my first lobster, came a celebration unto itself, a major victory! These milestones I can only liken to a child's first step or first spoken word.
On March 26, I contacted Dr. Clayman’s assistant, Rolando, asking when I could have the tube removed. He was a bit surprised that I still had it, given my progress. Jokingly I said, “I’d take it out myself if I could.” Then seriously he said that it’s not that difficult and if I was not squeamish about it, I could manage it myself.

I knew it wasn’t hard to remove the Mic-Key Button. Parents exchange them for their children that have them, regularly. I just wasn’t sure what you do when you take it out for good. Rolando explained, after it’s removed the hole will slowly close on its own and to keep it clean and covered for a week.

That was all I needed. My Mic-Key has been very good to me, but it was time for it to go! This would be my final victory! That night, I deflated the balloon that held the button in place and removed it from my belly. I can't begin to express the jubilation! If my life were a musical this is the song I would sing at this moment!



I have a complete photo shoot of me removing my tube, but after reviewing it, I thought maybe it wasn’t such a good thing to post. Although a few of my readers have requested to see the removal process, I think showing the final outcome is best.

Immediately after removing the tube, it looks more like a bullet wound!
VICTORY IS MINE!For the moment anyway…

PS Since removing the feeding tube I have gained 11 pounds!!! Go Junk Food!!!

Peace
B

Susan Boyle Finishes In Second Place

Well, after all the media scrutiny, Susan Boyle finishes in second place on Britain's Got Talent, but her final performance was award winning to me. If you haven't seen the new and improved Susan, check this out:

The Cancer Chronicles 36

IF IT'S MEDICALLY NECESSARY

I must be feeling better, because I’m going to bitch today. If you don’t want to hear it, click the little red "X" in the upper right hand corner and "POOF" you’re back to your happy place. Enough attitude for ya?

I have a friend who blogs about life with cancer and her trials and tribulations dealing with it. A recent topic on Jeanne’s site, The Assertive Cancer Patient discussed PET Scans and the fact that her doctor told her Medicare would only pay for ONE PET scan a year. This worried me because in June my doctor has scheduled me for 2 CT scans and 2 MRI’s and I was concerned that Medicare might not pay for all of them.

Typically, I would only have the 2 CT Scans, but due to some recent problems in my lower back the doctor was concerned and ordered and scheduled the MRI’s in addition.
I'm worried that the cancer might have traveled to the bone.

When I was in my 30’s I fell off a two story roof and compressed two lower vertebrae. The emergency room doctor told me that I would have a lot of pain as I got older because of this. Until the last few months I had very little problem, but lately the pain has been sever. During the last three weeks, I also have had great pain in my right elbow.

I can’t recall if I bumped it. Perhaps I’ve slept on it wrong. I just can’t figure out why it’s taking so long to heal. Because of all this I can’t help but wonder if the cancer has metastasized into other areas of my body. So, I deferred to my doctor with these issues and he ordered the extra scans. After reading Jeanne’s blog I emailed MD Anderson’s business office to ask if they would get pre-approval for all the work being done, just to be safe. The last thing I need is more huge medical bills!

EMAIL TO MDA BUSINESS OFFICE:

Who do I contact to make sure the tests I am scheduled for in June are covered by my insurance?

I'm having CT scans and MRI's. I know the x-rays and blood work are covered, but wasn't sure if there was coverage or a limitation on how often the CT and MRI's can be done.

Thank you,

REPLY:

I will need for you to re-verify that the ordering physician needs both the CT of the head and neck and the MRI of the t spine and l spine. These are a lot of scans (4) and the insurance will surely have a problem allowing so many to be done. If the physician does not need all these done the physicians scheduler needs to cancel the ones that are not needed and if the physician does indeed want the above done than I will try to get the authorization. Please check with me prior to 06/18/09 to verify which scans got approved. Call me at 713-745-XXXX

Thanks!
Roberta XXXXX

**************************************

I then left a message with my doctor’s office to “re-verify” that he needed all the scans. I read the email from Roberta so the doctor would understand the issue. While waiting for a reply I contacted Medicare and felt like I was chasing my tail!!!

CALL TO MEDICARE:

In the next couple of weeks my doctor has scheduled me for 4 scans, 2 CT Scans and 2 MRI's. Is all this covered by Medicare?

The answer was vague:


“IF IT’S MEDICALLY NECESSARY, Medicare will cover it."

Hum, who decides if it's medically necessary?


"MEDICARE."

So do I need to get prior approval?


"NO."

So, do I go ahead and have all 4 scans done? I don't want to end up with a big bill that I can't pay.


"IF IT'S MEDICALLY NECESSARY."

OK, so I don't need prior approval and I have the scans done that my doctor thinks are "medically necessary" and Medicare determines that they are not "medically necessary" and I get a bill for what's not covered?

"YES, YOU COULD BE BILLED."

CLICK!

My doctor’s nurse, Ann, returned my call and I told her the situation and that the business office needs “re-verification” that the scans are needed and that the insurance company would surely have a problem with them. Ann tells me that I should not have to worry and that it is the business office’s job to verify any needed approvals. Roberta told Ann she never told me to “re-verify” the need for the scans and denied stating, “The insurance company would surely have a problem with them.” She lied! Ann called here out and said she had a copy of my email and ended with, “I know you will take care of this, right?”

WTF? Roberta outright lied! I really appreciate Ann for her honesty and kindness. As for Roberta…find another job, you don’t belong in a field that requires you to care for the ill!
Guess who’s not “medically necessary!!??”

I called up my dear friend Deborah to bitch and complain. As I’ve often I complained, “I’m so tired of all this. I’m ready to die. Why doesn’t God want me?”

Without a beat, in a very Groucho Marks tone she quipped, “Ya want a list?” Love ya Deb!

That’s all for today folks!

Peace
B

Farrah's Story

On May 15, 2009, NBC aired a 2 hour documentary about one of the world's most famous celebrities. It is a gripping depiction of what life is like when you are faced with cancer; The highs and lows and the unknowns. No one is spared from this dreadful disease.

It doesn't matter if you're rich, beautiful, or live a life of faith, even an angel, like Farrah, is not spared. If you missed her story, here it is for you to view. Pray for her on her journey through the unknown. It's seriously time for her miracle.


I'm sorry for the commercial interruptions, but the video is worth the minor intrusion.

INSPIRATIONAL!

Susan Boyle from Britain's Got Talent

I LOVE an underdog...just watch and tell me what you feel when you are done.

HAPPY EASTER EVERYBODY!

Jesus and his Peeps

The Cancer Chronicles 35

NOVEMBER 2008 - Revisited

After a LONG recuperation period, it was time to prepare for my next check up at MD Anderson. So far I my diet consists of 30% real food. I'm tired of soups, puddings, and protein laced milkshakes. I have managed to begin eating pasta, tuna fish with gobs of mayo, and some chicken diced up, but not without great pain. It's like my tongue is exhausted from all the movement and afterwards begins to throb.

I'm learning that I can get some real food down with modifications. Ground beef is a nightmare. It breaks down into little pieces and ends up stuck behind my teeth where my tongue can't get at it to move it. But, if I add mashed potatoes I can manage the beef better. I'm trying so hard not to get used to using my fingers to manipulate my food. I can move food by sloshing it around with water, or sucking motions, mixing foods that compliment my need, or with the use of a fork to place it.

Often when I chew, the food wants to come to the front of my mouth. If I'm not careful, it will just fall out. I'm learning that if I apply pressure to my lower lip this won't happen. It seems to only happen with bulkier foods. I believe this is due to the doctors cutting my mouth open on either side for easier access. My lower lip has never fully recovered. It's larger than it was and doesn't feel as strong.

Even though the tongue has been rebuilt, it is shorter and less mobile. I'm not sure if all tongue cancer patients have this problem. I also had the left side floor of my mouth redone too since the cancer infiltrated it. I'm really amazed at how much that damn tongue used to do without me ever realizing it!

Throughout October and November I experimented with many foods. I was surprised to find I could eat salad easier if I shredded the lettuce instead of dicing it. Tomatoes, onions, olives, topped with crab meat made it worth eating. If I removed the skin from the cucumber and diced it up, I could also manage that. Of course adding 1000 calories of ranch dressing also made it even easier. Some pastas, the wider variety, seem easy to eat since they are slippery and I can move them around with a sucking motion. With the addition of a sauce like Alfredo, it becomes even easier. With one exception...spaghetti noodles

Because the salivary glands took a hit during radiation, breads are a big problem for me. They act like a sponge, sucking up all the moisture and leaving me with paste. Some very soft breads like Wonder Bread are easier if I use mayo or a dressing. Olive oil with pesto is VERY helpful, but some foods seem like they are just too much trouble, leaving my mouth exhausted as if my tongue just ran a marathon!

Oddly enough, grilled cheese isn't too difficult as long as it is made with Wonder Bread and LOTS of butter and I mean almost 1/2 a stick. At this point I'm not worried about calories, but clogged arteries could be a issue soon!

I am preparing to see my doctors again in a few weeks to address some scar tissue (scar band) and have my 6 month check up to see if the cancer has returned. The scar band is holding my tongue in place and restricting its movement. It acts like a rubber band. I want the doctor to look and see if it can be cut or modified for greater movement.

Thanksgiving was quiet and I was able to eat some turkey with LOTS of gravy and mashed potatoes. I hear my heart pounding now! It's so worth being able to eat some real foods again, even if they have to be modified for consumption.

By the end of November I was only relying on my feeding tube for 50% of my nutrition. I want off that tube so bad!!!! I just want to sit down and feel like I can have a real meal again and enjoy it rather than it requiring so much work and concentration. I have to be so careful when eating that I don't hold much of a conversation. I can aspirate my food and get it caught in my wind pipe very easily. Choking to death is not an option!!!!

As much as I'm so excited about beginning to eat real food again, it is so tiring and time consuming. I end up with great jaw and tongue pain. My portions are 1/3 what they should be and it takes me 40 minutes to complete a meal. Because I require so much liquid to wash down my food, I'm sure the 20 to 30 ounces of water has something to do with me filling up so fast.

Someday I want to go out and eat in public again without being embarrassed. For now, the battle continues as I prepare to see my doctors next week.

Peace
B