Friday, March 2, 2012

To Proton or to Photon??? That is the Question

I have a big decision to make. I must choose a hero to fight for my life. These heroes are subatomic particles whose existence I could not have even fathomed as a kid. Particles so tiny that most microscopes can't squint to see them. Yet they will go to battle for me against my tumor, and hopefully save my life. That is my awesome news.... even though I have cancer, my oncologist says that he believes there is a CURE! And that cure is either a Proton or a Photon.

My cancer is a particularly nasty one, and laughs in the face of conventional radiation. It's very resistant to the kinds of treatment that people are more familiar with. That's why we are calling in the big guns. Neither treatment is without side effects, however. With either choice, permanent and total deafness will likely result to my right ear. I will also be very sick for a few weeks after therapy. But as the great Poison so aptly mused, "every rose has its thorn."

I got to meet my cancer doctor yesterday. He was an intelligent and kind individual. I do not think he was prepared for me as a patient, however. I began the meeting by asking him to prove to me that my tumor was actually a chondrosarcoma versus the more evil and malicious chordoma (these can and have been easily mistaken for one another- with disastrous outcomes). He satisfied me with enough evidence that chondrosarcoma was still my problem, and then we had a long discussion on the subatomic interactions of the proton versus a photon in ensuring the total death and destruction of tumor cells. He did not understand that this is the type of conversation that I find necessary before making a major decision involving my possible mortality. If it were up to me, the two of us would have gone out for a nice casual lunch and discussed such pleasantries over a tall glass of pink lemonade (or an icy peach Bellini), making for a much more conducive environment for contemplation of such subject matter.

Anyway. So the direction of my treatment path is a decision I must make alone. Proton or Photon? Who is going to pulverize my tumor into a mash of oblivion most efficiently and effectively?

Don't you want a Bellini after looking at all that now?

The two big options are:

 a) PROTON- a specialized form of radiation therapy which uses relatively low doses of radiation via proton interactions with the tumor cell over EIGHT weeks. Option "a" would require that I move to another city for two months and receive treatment daily.
There is more evidence that I have been able to find in my research that supports the proton therapy. It is most assuredly a good treatment and has been proven. It could CURE me!
Cost will be substantial. Inconvenience of moving to Boston, Houston, Jacksonville. Two months away from immediate family. More disruption to my already chaotic little life. Most likely will cause total deafness to my right ear.

b) PHOTON- these little guys are INTENSE. What took my proton friends eight weeks to accomplish could be done in just one radio-surgical procedure with these guys. It used to be unsafe to use these in past cases like mine, because they would not only fry the tumor, but my brain stem and temporal lobe of the brain, as well. (As if I could spare any more neurons). However, there is new technology available which allows these bad-asses to keep their beat-down limited to just the tumor area within 1 mm. The Radiation/Oncology center at UAB is privy to a brand-new technology that is the ONLY ONE OF ITS KIND IN THE WORLD that would allow me to pursue this treatment option.
Cancer doc believes he can achieve same result (CURE!!!!!!!) with this one-time surgery as he could with the proton therapy. In Birmingham. Less disruption to my "routine." Get better faster.
Hasn't been used for very long. Not as much research to prove that it is "just as good" as proton therapy. Total deafness to right ear is likely as a result.

I am really thinking and praying about this. I have read at least 12 studies about treatments of my tumor, and am considering each carefully. Cost and time are sacrifices I am readily willing to make in order to live a long, healthy life. I am inclined toward the photon option right now, but need a little longer to weigh the pros and cons. This could be the biggest decision I've ever made in my life.

In a few weeks, I will be getting a PET scan of my body just to make sure that there are no sites of metastasis or any secondary cancer areas. My oncologist believes that there is a less than 5% chance of there being any, but I would like to be sure. After that is cleared, I should be ready to get started on killing this tumor.

I will see my neurosurgeon and ear-nose-throat surgeon on March 13th. The PET scan should hopefully be done on either March 12th or 14th. I will try to keep everyone posted!

If any of the readers have had any experience with these types of radiation, could you please leave me a message or comment about it? I am new to this world and any outside perspective is super-welcome. Any thoughts or comments are fine! Please pray for me that my decision will be guided in the correct way and for the best outcome.

 I think I may have a Bellini now. :)

Monday, February 27, 2012

Mardi Gras Meningitis

Being a lifelong resident of Mobile, AL, Mardi Gras is part of who I am. It's one of those little quirky bits of culture I am proud to have. We Gulf Coasters have a few great things going for us, and I'm convinced that Mardi Gras is one. We've got King Cakes (OMG, they are soooo yummy), moonpies, flashy beads, parades, cocktails, parties and balls, big fancy hats, and sparkly gowns. Anyway, I think all of those things are just wonderful.

Needless to say, I wanted to attend the annual Mardi Gras festivities with every fiber of my being. I didn't care if I had to be wheeled around atop some one's drag-along cooler... I wanted to be there. I had a crazy hat to cover my crazy head and a cute little dress just the right shade of purple. And a feather boa to wrap around my shoulders. I was going to be FABULOUS. Brain surgery be damned!

Alas, it was not to be so. My regal presence was unable to grace the revelry. I was back in the hospital. In Birmingham. Already. Again. Without a bead or a doubloon in sight. *Can't you just hear the tragic violins playing as the big brass band Mardi Gras jazz fades away?

It all started on Joe Cain Day. For those of you who are unfamiliar with this glorious holiday, it is the Sunday before Fat Tuesday (Mardi Gras Day). In Mobile, Joe Cain is a great hero; he revived the tradition of celebrating Mardi Gras after it had been halted due to that Civil War thingy.

Anyway. Joe Cain Day. In Mobile, it's one of the best parade days. I was gonna be there. Only, I felt bad. Really, really bad. My head was pounding any time I sat up. I didn't get out of bed because when I did, the world became a Tilt-a-Whirl. "No matter, " I thought to myself. "I have until Fat Tuesday to get better."


On Monday, the pounding intensified. Then the nausea set in. I will spare you gruesome details, but my bathroom wall was a different color by that afternoon. I decided it would be a good idea to get some assistance, as I felt that my death was eminent.

My mother-in-law and sister rushed to my aid, and hauled me to the emergency room at Mobile Infirmary. I got bloodwork, CT scans, IV fluids, anti-vomit meds, and some glorious pain medication. It wasn't enough. I was still in terrible pain.

After reviewing my CT scan, the emergency room doctor thought that the pressure in my head/brain was very high. This often necessitates another surgery in which a small catheter is placed inside the brain to allow spinal fluid to drain out. This helps bring the pressure down. He didn't want to be messing with all of that nonsense. The doctor called my neurosurgeon in Birmingham, and it was decided that I would have to go back to UAB for them to figure me out.

I was strapped down to a gurney in the back of the ambulance for four hours for a trek up I-65 North. There was, unfortunately, a quite creepy paramedic along for the ride. Let's just say that there were a couple of "accidental brushing" incidents that I would have normally addressed. But this guy held the medication I desperately needed. And calling him out would have certainly made for an even more uncomfortable four-hour drive. So I said to myself, "Well, it's nothing that couldn't have happened at Mardi Gras anyway!" I then asked for a nice dose of my morphine. Laissez les bons temps rouler!

Finally, I arrived at my destination. I was diagnosed with inflammatory meningitis (not the contagious type) as a result of having completed my round of steroids at home. Apparently, my body became quite angry at all of the abuse it had been through over the past few weeks and decided to attack my meninges as a sign of displeasure. So when it could inflame, it did so in grand fashion.

I was put out of my misery all night... wonderful medication allowed me to finally sleep and rest to decrease the pressure in my head. The steroids worked their magic. IV fluids were given to relieve the dehydration from the day. I felt wonderful the next day. But I still wasn't ready to go home.

Another lovely development over the weekend had been the inability to move the right side of my face. At all. My speech had become slurred, it was hard to eat and drink, my face looked twisted any time I smiled or laughed. Beautiful. Not.

I had irritation to the facial nerve on the right side after surgery. This caused what's called "Bell's Palsy." I had to go on additional medications for this, and learned that it would probably take about 6 months for me to get use of my face back. On the plus side, since it's pretty much paralyzed it's kind-of like free botox. Who doesn't want FREE BOTOX? So, yeah. My face is really weird for a while. More weird than usual, even.

Late Tuesday night, I was treated to the radiology technician arriving in my room to take pictures of my beauty. Ha! It was for a chest x-ray and for an abdominal x-ray. I was kind-of confused about this, but figured that maybe my doctors just wanted to be extra-thorough for some reason. I was a little groggy from all of the medications I had been given.

He told me I had to take off my bra for the chest x-ray. When I did, I accidentally flashed him. This was pretty embarrassing, cause he was kind-of cute and in my age group. He took the chest x-ray, and proceeded to tell me that the abdominal x-ray was for "the tube in my belly." Say what? I wasn't aware that any sort of tube had been placed in my abdomen. But I was aware of the fact that I had been walking around the hospital unit earlier, and noticed an elderly, ill-looking, female patient with the last name of Bennett on her door.

I let him know that I was almost sure he had the wrong girl. He checked it out, and yes. I was the wrong patient. So he got to see the boobs for nothing. And it was Mardi Gras. And I didn't even get any beads. The one time I show my boobs to a total stranger for no reason on Mardi Gras day.

Ash Wednesday was my day of liberation. I was free at last. Except that I am now slave to my medications. I have to take around 22 pills per day at different times, staggered around the clock. It's tough to keep up with. But I'm doing my best to be a model patient. I know that millions of people probably have to take many more drugs than that, but when you go from nothing to 22, it's shocking.

At any rate, I think that catches everyone up on my cancer adventure so far. I get to go meet my oncologist (cancer doctor) on Thursday, March 1st. I will discuss my prognosis and treatment plan with him at that time. I will post details when available. I also have to see my neurosurgeon and ear-nose-throat surgeon on March 13th. I get to find out if my hearing will come back and how my progress is going.

So for now, I'm resting and relaxing. Taking my medications all day. I can't drive yet, because I'm still on some heavy-duty medications that make the operation of heavy machinery off-limits. I still have good days and bad days, but I can see improvements all the time. Anyone who is around Mobile, feel free to come on by for a visit. I'm not as much fun as I used to be yet, but I'm getting there.

Brain Surgery

Pic of me a few days after surgery. You can't see the entire incision, as my hair covers the back of it.
My brain drain had been removed by this time, as well. This is one of the least gruesome photos.

Brain surgery (craniotomy for biopsy/excision of tumor) was done as scheduled on Friday, Feb 3rd, at University of Alabama at Birmingham Hospital. I did very well after surgery, and only had to stay in the intensive care unit for a day. I was transferred to the neuro-stepdown unit and was released on Monday night! Apparently, I was a superstar patient, as most people are not able to go home so quickly.

The tumor was accessed and a portion of it was able to be removed. There was no way for the entire tumor to be taken out due to its difficult location, so the pieces they got were sent for biopsy. It was, as we all now know, determined to be malignant. Chondrosarcoma, to be precise.

The staples were removed on Thursday of the next week, which came as a great relief to me.The incision was healing well, and my neurosurgeon seemed pleased with my progress. I was still bothered a great deal by pain on the right side of my face. It was terribly difficult to chew and swallow, my right eye was black-and-blue, and my face was extremely swollen. I was also upset that I had become mostly-deaf in my right ear. The incision was not outright painful, but most worrisome. I was tired, sleeping most of the day and could not be out of bed for more than an hour or two at the time.

It was a very difficult time in my life. I felt dazed, alone, and useless. I wondered if this cancer was going to kill me sloooowwwwllly. I didn't want to be this "sick person." I couldn't do much of anything for myself. I read magazines, books, and watched a lot of movies and television. Depression was inevitable, as I was not at all used to being in the position of someone who needed help. It's a very humbling experience when one must depend on the goodness and kindness of others. Mostly, I missed my mom.

When we go through something tough, I think that many people just want to be held and hugged by their mommies. I was no exception. My mom gave the best hugs and cuddles I had ever experienced. She would always have the most soothing and sweet words to bring me through any crisis or calamity. Her prayers for me would instantly bring peace and calm. And she was not able to provide me with any of those comforts. She was gone. I don't think I had ever missed her as much as I did during the days after my surgery and diagnosis.

But I had a secret weapon. The most amazing and awesome friends and family that ANYBODY could ever ask for. My school went above and beyond any expectations to ensure that I was taken care of and prayed for before, during, and AFTER my surgery.

Before my surgery took place, Myra (a living angel on earth) organized a card-drive for my class to participate in. Everyone in my entire class had written a get-well/good-thoughts card with the sweetest, most encouraging messages inside. Some were even hand-made (and adorable). Myra delivered all of these to me in a gorgeous gift-box tied up in ribbons and bows with some hospital-goodies inside the week before my surgery. It really helped me get ready for the battle ahead, and made me feel so special and loved.

The dean of UABSO, a bevy of professors, classmates, and friends came to the hospital every day to visit with me. A dear classmate and friend, Karla, started a website for me so that I would be assured a good meal and visitor EVERY DAY. Classmates and professors alike signed up for days to come to my apartment, bring me a delicious dinner, and sit with me for a while. I never went without anything I needed, and I was given much more extravagant meals than I would have EVER made myself.

The Trusty Gang of Girlfriends were godsends. They'd come hang out, make me laugh, and start up our usual craziness. They brought over DVDs, Slushies, Balloons, flowers, joke books, any little thing to make me happy. It was all of these incredible people who pulled me through what could've been the darkest time of my life. They were the sunshine and rainbows I looked forward to each day.

Family stepped-up in a big way. They came up from Mobile to be with me during my surgery. They brushed my hair, sat with me, tended to my every whim. Treats were brought in every day... I was treated like a princess by all of them.

It was hard to leave Birmingham behind. So many supporting people had come to my assistance when I so desperately needed it. I loved my little apartment. There were many memories shared. It was going to be terrible to not be so close to the Gang of Girlfriends. They are my family, and are such an important part of my life.

Nevertheless, it was time to pack up (at least temporarily) that part of my life and come home to Mobile. I was on the road to recovery.

I Need Brain Surgery!

My neurosurgeon is wonderful. She just doesn't really know how to prepare you for something that's kind-of a big deal. She told me that she wasn't really worried about the tumor, it didn't seem like it was too major of a problem, and she just might want to get a little biopsy of it. The word, "biopsy" does not sound very threatening to me. I've had lots of moles on my skin biopsied in the dermatologist's office. No bigs. So when my tumor needed to have a biopsy done, I was cool with that.

Then things weren't so cool. A few days later, I found out that my case was assigned to what is lovingly referred to as "TUMOR BOARD." This is a team of specialists who deal with neurology, heads in general, cancer, neuro-oncology, etc. Tumor Board wanted me to have this "little biopsy". And the way they had to handle this little task was to open up my skull, lift up a lobe of my brain, drill down through skull bone, and take this little piece of tumor out. Brain surgery that would require me to also have an Ear-Nose-and Throat surgeon to protect my hearing, carotid artery, and a cool little bundle of nerves- any of which could be severed during this surgery with not the best of outcomes.

I was given this news in clinic at the Optometry School. I was supposed to take on patients and see them for their eye exams. That did not occur. I was taken aback, to say the least, and cried for probably an hour to one of the attending doctors about my new-found misfortune. This surgery meant that I would have to withdraw from classes at school for the next YEAR. I would not be able to graduate with my classmates, take National Board exams that March, or see any of my closest friends on a regular basis.

Did I mention that all of this news was delivered right around FINAL EXAMS week and CHRISTMAS? And that on top of this fun factoid, it would be the first Christmas that my family would have without my dear mother, who had suddenly and unexpectedly died in April.

I took final exams on an adjusted schedule, as it was quite difficult to concentrate on the subtle changes of the optic nerve in Glaucomatous conditions while contemplating one's skull being sawed open in a matter of weeks. My school was very gracious in accommodating me during that whirlwind week and beyond. I passed all of my classes, and ended up with all A's and B's!

Christmas holidays came and went, I had numerous appointments with lots of doctors, and finally a date was set. February 3, 2012 was the day that my surgery would commence. Yikes.

How my Cancer was Discovered

The way my cancer was found is an odd story. It was not through any routine screening, any climax to a mystery illness. Just a serendipitous, random finding after one of my classic Sierra-tumbles down the stairs.

Monday afternoon, November 1st, 2011...

It's been a long day at UAB School of Optometry. My heels are only four-inches high today, so no biggie. I'll take the stairs like a champ. I trudge up the stairwell, ready to pick up the rest of my massive load of equipment, papers, notebooks, etc. No biggie.

The descent down the stairs was not so successful. Weighted down by my "necessities", a tumble down the stairs was not the way I had intended to cap off my November first. The pain in my shoulder was pretty intense. I hobbled down the best I could, and figured I would try to just get home and shake it off. That was, until I discovered that my right shoulder would not allow my arm to be lifted enough to drive home. My trusty gang of girlfriends recieved the distress call, and whisked my sorry self to the emergency room in a flash.

X-rays. Typical. Dislocated right shoulder? Not so much. Possible broken neck? Yep. Apparently, I have some awesome congenital abnormality in my spine (cervical area) that made the radiologist believe that I had sustained a compression fracture in my neck due to the fall. I was placed into a super-fashionable neck brace and sent for an urgent CT scan to see how badly my neck was broken.

Pain medications, THANK YOU. Tears a-plenty. And the awesome news that I don't have a broken neck at all. But, ma'am, by the way.... there is this lesion-thing in your head that you probably should get seen about. WHAT???

The doctor did not even tell me this, it was the nurse who rattled off some radiology lingo about a petrossal something-or-another lesion blahblahblah in my head. Being slightly medically inclined, I was struck with great curiosity about some lesion hanging out in my skull. I asked for a copy of the radiologist's interpretation of the finding, and the nurse scribbled it randomly on the back of a discharge sheet. I was sent on my way, dazed and confused on pain medication.

Again, the trusty girlfriends were at my side. Razz (short for Rasika), who lives in my apartment complex, drove me home and started researching this "expansile lesion on the petrossal apex of the temporal bone." As it is a vague, odd descriptor, we did not find this to be terribly enlightening, and revealing my mystery lesion became a new project for us. Alas, Google would not tell me what was going on in my head. Bummer.

A visit to my general physician the next week led to a MRI of my brain. I'd never had this procedure, and it was an interesting experience. My MRI scan resulted in a confirmation of the CT's finding... a 16 mm expansile lesion blahblahblah. The disturbing part of this is that the lesion took up the contrast dye during the MRI. That worried the doctor a bit, and I got a referral to my awesome NEUROSURGEON.

Let's get this party started!

The Big Announcement

So. This is always the most awkward part. Awkward for the physician to notify the patient, awkward for the patient to notify their friends and family. The Big Announcement must be made. But how should it be done?  A dramatic speech? A witty sarcasm? A simple, "GUESS WHAT? I HAVE CANCER!"

Well... this is my way. A little blog spot, I suppose.  Many people already know, but I have begun to run into people who do not, and it is always an unusual exchange. Do I bring it up?  If I do bring it up, how will they react? If I don't bring it up, will they be upset if they later discover my condition?

So, my BIG ANNOUNCEMENT is made. Yes, I have been diagnosed with cancer. It is a quite rare breed (would you expect me to have normal cancer?) and not many people have ever heard of it. The name of my lovely companion is Chondrosarcoma. It's a cancer of cartilagenous tissue (bone, generally speaking). The people who have this guest in their bodies usually entertain it in long bones or their sternum or pelvis. I, of course, had to be different. My Chondrosarcoma lives in the base of my skull, near my brain stem.

My very competent team of physicians (yes, I have a team of around 8 or 10) believe that my tumor has been discovered at a very convenient time. It is classified as a "Low Grade Tumor" (the only time I have been quite satisfied at a low grade in anything), and we are all hopeful that there is the potential that I may be cured!

My special cancer will obviously require a special treatment. One that I will likely go to either Jacksonville, FL, or Houston (M D Anderson Clinic) in order to obtain. I must wait a period of time to heal from the special BRAIN SURGERY I just had a few weeks ago before I can begin this thearpy.

Anyway, there it is. Out there in cyberspace for anyone to see. If you'd like to follow me on my journey through Cancerland, stay tuned.