The Home Stretch

So, how's your day? Mine? Mine's been good, real good. Why you ask? Well, I am on the tail end of my radiation treatment and I'm feeling more and more like Trevor than I have in a seemingly long time. That's right folks, after having my not so family friendly dose of radiation last Friday I am feeling much better now that I can retake my Synthroid hormone pills and am allowed to come out of my room. The whole process was fairly surreal or rather esoteric (no no no, I'm not studying for the GRE. I'm just pretentious). All the stories that I've read of individuals like me with my diagnosis speak of the radiation process involving led lined hospital rooms with doctors in full hazmat suits and led lined pill boxes with nurses giving orders via a two way intercom. My story was a wee bit different. 

After being the first to show at a doctors office and later joined by the opening nurse I wandered around a darkened building thinking to myself "Hey this is pretty neat, it's like backstage passes" but then realizing "Oh wait, they made me come through the back door and the whole place is empty because I'm about to be radioactive in it!" My nurse Keon directed me to a paper work laden room where I signed and waited about 40 minutes for the sounds of the doctors inevitable footsteps. Easy to distinguish when they're the only ones in the whole joint. When he entered and we dispensed the usual pleasantries (again, pretentious) he answered all my questions of the process and of my quarantine before he asked me, "well, you ready?" To which I responded with labored breath in anticipation, "let's do this." 

Doctor: "Well, it's all going to be a bit anti-climactic from here, follow me." 

Me: "OK." 

Doctor: "We're going to go over to this room (read: closet) and I'm going to hand you this." 

For my readers at home who are undoubtedly expecting a horse pill that looked like it was melting from the inside or a giant led thermos that once the door was closed behind me I would unscrew the cap only to then ingest the contents where no one could see me cry, let me stop you there. Being transfered from the Doctor to myself was not the above but rather... a small dixie cup with two capsules. Like I was any patient in any hospital ward getting my daily dose of [fill in the blank]. We exchanged glances as he shook a bottle of water at me and smiled. 

Me: "Cheers."

"Apparently," he said, "it's a common occurrence for some crazy people to take the pills and shove them in the corner of there mouths only to spit them on the ground after they leave. So, I'm going to 'check' to make sure  you swallowed them." By this he ment that he would take a geiger counter and wave it over my body, head to stomach. You know, the ones that we saw on tv during the whole Japanese meltdown gig. That one. As I watched the meter register from 0 to, well lets just be honest, the fact that it registered anything but 0 while over my body gives credence to my previous nomer of surreal. As soon as he waved over my stomach the counter went off the scale and he smiled and said "well done. There it is."And I was radioactive. 

With a gulp of water and a screw of a cap I was escorted out of the office. I went to shake the doctor's hand and he looked at it with a smile and said, "well, I guess there's no radiation there yet." He then shook my hand, grabbed the back door and threw it open as I escaped into morning traffic. 

The next, or rather last, 4 days have been a dance of trying to stay away from family and friends while still receiving 3 meals a day (I can eat real food again! Wahoo!). The keyword of this time has been water. I've practically drunk my weight in water trying to flush the radiation out of my system. But, the good news is that it's all done. My sequesterization (sp?) is over and I'm once again a free man. I can feel the meds starting to take their effect once more and should be back to normal soon. The only thing left to do now is to have my full body scan... tomorrow. 

After a typical clear liquids diet and a Nuclear Medicine Scan at 9:00am tomorrow, Sept 7th, I will officially be done with my cancer treatment! Praise the Lord from whom all Blessings Flow!! Again, the prayer here is that I will receive a "scan with no surprises." Lord willing I will receive a call from the doctor's office with those words sometime by the end of work Friday. If I get a call saying otherwise, well, we'll petition the Lord for that if it comes. 

Thank you all so much for sticking with me this far. We're almost there. It really is the home stretch. 

Eve

This is going to be a slightly different post than my usual. That is my usual if i had posted in the last month.

I've been mulling over the writing of an update for this blog for some time now. I even prepared a full entry about a week ago yet didn't post it. Why? I would ask myself. At first I thought that I didn't want to be a bother to peoples and keep back in private that which everyone asked for. A funny thing sickness. In high school I would have killed for this kind of attention. Everyone always interested in "what's new with you" or asking "how ya doin?'". They even actually want the answer! It's amazing. However, as I slowly began to reveal to family then friends of my diagnosis I quickly learned how much a normal conversation is worth. The ability to shoot the breeze without having to read into the clouds for a favorable outcome. A Facebook message about a new concert and not a new success story. Normalcy. However, as I pondered my reluctance on posting I think I'm stumbling onto a hounded idea that I've beaten many a horse in using, community. It's been truly amazing to see the depths of peoples giving in both prayer and speech. People I haven't talked to in years calling me up with encouragement learned from a relative or themselves. Having a friend hunt down an old bed frame that's lost amidst a dorm attic just so I can rest easy. I even had a complete stranger hunt down the head of a major pharmaceuticals company just on the off chance that they could impact the course of my treatment... It's astounding. I've often been a cynique of distanced relationships yet I have found myself humbled. I thank you, friend, for your love of my life. It shall not be easily forgotten. 

...

Eve. Today is the eve of the end as I have come to call it. I first noticed a growth in my neck when I was 19, five years later I find myself on a Thursday night having removed everything from my room that I can't throw away or live without in anticipation the day. You know, every eve has a day. The culmination of our anticipation. A breaking point when you finally know that you've arrived. For some right now it's school or, for a certain group of friends of mine, a fantasy football draft. For me, it's an ingested dose of Radioactive Iodine that will kill off any malignant Thyroid cells in my body. What's at risk? This time it's just my salivary glands and my taste buds. Those and a particularly bad Mickey Mouse and Donald Duck painting a rainbow comforter. It was the only one that my parents felt okay to douse in radiation and toss. Who knew? Luckily I've reacted fairly well to the lack of my Synthroid (For a full explanation of what this means, look below for hypothyroidism). My energy is adequate and my temper... well, my parents and girlfriend love me so it helps. This whole iodine free diet that they had me go one so that my body will absorb the radioactive Iodine tomorrow isn't that bad. Actually, it's kinda great! Did you know that you could make your own tortilla chips by cutting and frying in a little oil filled pan some flour tortillas and then sprinkling with salt? Lord bless the Hispanic nation! Up to bat is my RAI (radioactive Iodine) that will put me at least 6 feet away from anyone for 5 days, 7 if you're prego/growing. Though my full body scan is wednesday the 7th, D day is either Thursday or Friday when I'll get my results. If you pray, hell even if you don't, pray for a clear scan. A clear scan means the cancer has not spread to my bones and my lungs. A clear scan means I can start my life, take my MCAT, apply to med school, chase a girl. Life. An unclear scan would mean less, much less. Friends I love you and I need your love. Please petition on my behalf for the radiation to do its work. Medicine is a remarkable tool, for man and for God. Clear scan. Ojala que. 

Stay tuned...

Frankenstein's Monster has never looked so good.

I live!

Well, to be fair, that was never in question. However.... I speak! Praise the Lord.

Up next is a story of God's faithfulness to your prayers. Let me show you.

It all began with a good night's sleep. I'll be honest, I was a little nervous. I mean, one would expect to stay up all night before an event like this, yet I don't think I've ever slept more soundly or woke up more swiftly. After a 4:00a.m. wake up call my Father and I checked in at 5:30a.m. to the hospital's surgery ward. Though I had gotten a good night of sleep I was worried that being such an early surgery my Surgeon would be, well, slightly drowsy. While waiting, I saw my Surgeon roaming the halls. In his own way, he swaggered in to my pre-surg room touting a story of just removing a pin from a cop's throat and exclaiming "I'm all warmed up!" and writing "yes" on both sides of my throat. After that there was a whirlwind of family, nurses, and a nurse anesthetist named Bill. My family braved the morning air and and enjoyed every second of me wearing a gown and hair net. We enjoyed the short time we had until the nurse came to take me away. Like a movie, as soon as she came everything happened so fast. At once, my 6x10 room vacated it's ten occupants and out I came on a stretcher, family lining the hall. A rushed down the hall, hand in air as we pushed through the double door marked surgery, hooked a left at the scrub station, and "churned" right at Operating Room 6. Inside there was glits, glam, and an ominous table that had arms. After being laid upon it and being introduced to the surgical staff, Bill, Bob, Sarah, Donna, and an anesthesiologist that I can only remember her named sounding like Dr. Voldemort, the surgeon came in for one last salute. After some reassurance he left and I shouted out "best of luck" as a giggle rolled through Operating Room 6.  Then there were only 6. Dr. Voldemort began speaking from behind my head saying that they were pushing my first cocktail as she walked around the side of my bed. She asked for my full name, "Trevor" "Maatoox", then what procedure I was there for, "aaa tooootalllllll thyroiiiiidect'omeeeeeeee." "Wow, you guys already sound weird.... well, happy hunnntiinnnnggg...."And I was out.

The next thing I remember was a nurse, later named Karen who had a son also named Trevor, gently telling me it was time to wake up. After pushing a pain killer and letting me come to life they took me to my room. As soon as we came out of the post-op room, which had a lovely view of Yogurtology, my family was again lining the halls. For me what was only minutes, for them was over 3 hours (It was only suppose to be a 90 minute surgery). After arriving in room 683 and getting settled I started to feel a bit nauseous so they gave me some anti-nausea medicine (for some reason this included alcohol wipes on my nose... yeah...). And that was the last "real drug" that I was given. For some reason that I'm still not quite sure of, my outpatient surgery was turned into an overnight stay. Luckily, I had my family stay with me for most of the day, leaving at around 4:00pm only to return at 7:00. I took my first tylenol just before they got there. Seth, my twin, visited with his girlfriend after work at 9:00 bringing the only proper way to sooth a sore throat, soft-serve Yogurt from Yogurtology (with Nurse approval, of course). Having only had a short nap mid-afternoon, by 10 I was ready for a long, solid, uninterrupted, quiet night's rest.... In a hospital? Ha!

Even though my night nurse Ming and CNA Sean treated me great, hourly check ups and Calcium supplements dont make for my previous vision for a good night's rest. My 6:00a.m. lab test became a 4:30a.m. blood draw. My parents arrived just before 7:00a.m. when my surgeon was suppose to show up for the morning rounds and to authorize my discharge. 7:00 a.m. became 9:30a.m. before I was able to finally speak with Dr. Deems. He told me that the surgery went great! He was able to separate all four of my parathyroid glands from my thyroid and leave them in place instead of damaging or reinserting them in my sternoclydomastoid muscle (read: neck). My ability to speak showed that he was able to preserve my voice fully, and my lack of any numbness shows that I have little-to-no nerve damage around my neck and the incision. What's more, the removed lymph nodes looked normal, without blackness or abnormal growth, meaning an increase in likelihood that the Cancer hadn't spread. Everything had gone to plan, accept one thing. My tumor. The ultrasound revealed a 3.8cm mass, about the size of an egg. The total thyroidectomy revealed a mass the size of an orange. Bob, the surgeon's assistant, claimed that it looked not just a mean kind of red but like chicken liver. An Orange! The tumor had been so large that it displaced my windpipe by 2cm and went deep enough to go around the back of my esophagus. They were amazed that I was asymptomatic. Though the size was a surprise the better surprise was that the tumor was "very well encapsulated." This means that whatever cancer was in my tumor likely stayed in my tumor, a premonition that will await affirmation until my full body scan in 6 weeks. What's all this mean? I was free to go. I was going home.

If you're wondering how I'm currently feeling, I'm pretty sore. Dr. Deems claimed that unless I go mow my lawn I'm not going to hurt the incision, which is on my collarbone, so I should stretch. I can turn my head almost 90 degrees each way, though raising my head up is still a little difficult. Pain around the incision is almost non-existent. It feels only like I have a bruise on my neck. The worst part of it all is my sore throat as I swallow. Due to being on a respirator I have a fat lip and an inflamed larynx. However, I am able to swallow and eat solid food. All in all, I'm hurt but working. I'm already healing fast. Only one day after surgery I am on No pain killers, I can talk some, and I'm eating Pizza! What's to thank for all of this? Prayers. I'm assured of it. Save for the size of the tumor the surgery could not have gone any better. Every corner I turn I'm continually reminded by nurses and patients how fortunate I am to have the specialists that I have. My nurse told me that the average wait for my endocrinologist is four months. I waited one week. The same man the city trusts with the care of their police officers I trusted with my own throat. God is good.

And so starts my new life and regiment. With Stephani on the other side of Skype I took my first of a never ending series of Synthroid hormone pills. Up next is a post-op with the surgeon on 6/30, and 3 weeks after that with my Endocrinologist. The task at hand? Heal my neck, undergo radioactive Iodine, and Regulate my Hormones. With your prayers all of this will happen just as everything has happened up to this point. With speed and accuracy. I thank you again for your continued prayers. I'm not out of the woods yet, but I'm certainly on a well worn path. Thank you.

Top three reasons to stay up all night. 1) Disney 2) Christmas 3) Surgery?

So the day has finally come.

I just spoke with the surgeons office and they have set a day for surgery.... Friday, June 24. The time will probably be at 7:00am (read: arrive at 5:30) at Sarasota Memorial Hospital. The location is a huge blessing not only because it's a great hospital or that the chaplain that has been so generous to me and my family is located at that hospital, but my sister-in-law and her mother also work there. It'll truly be a family affair!

Though I'm instinctually pretty nervous, I can't help but marvel at the blessing that this is. As those of you who have read more than this post know, I started out this process in Boston back in March. Though Boston has some of the best physicians in the nation, you can't get to them. If you can get to them, there's still an average of a 55 day wait. To illustrate this, I was diagnosed with Thyroid Cancer May 12th. The first available appointment with a surgeon, not a specifically requested surgeon, was going to be June 24th. Since coming to Florida I have begun initial talks, hour long visits, had blood tests, chest x-rays, scheduled a surgery date, and will have surgery... all within 2 weeks.

Coming to Florida for my treatment was certainly the correct decision for my care. Praise God for swiftly answered prayer. I thank you for your continued prayer as the day quickens and as I undergo surgery to finally remove the cancer from my body. God is Good!

In Come the White Coats

The first of many big decisions in this process has been where to have treatment. Due to the length of treatment, specifically the hypo-thyroidism and being radioactive, my family and I decided that it would be best to seek treatment in Florida. And so the search for a local endocrinologist and surgeon in Sarasota, Fl began. Luckily, my parents happen to know several individuals who are familiar with local specialists and were able to give lists of suggestions. Over and over again we came across two names, an endocrinologist named Dr. Mark Lupo and a surgeon named Dr. Deems. Being so highly recommended we naturally looked into them. As it turns out, both men are world renowned for their speciality... and they were in my backyard! After speaking with my Insurance case manager, Carla, we found out that they were even within my insurance network!! God is so good!

After running the race that is medical records I finally got all my records sent to both offices and dates of our first meetings. Lupo on June 10th and Deems on June 14th (the very day I was suppose to have my first endocrinologist meeting in Boston!). Last friday was the meeting with Lupo and I must confess, it was probably one the best hours of my life. 

Besides spending over 45 minutes with me, Dr. Lupo came across as a genuine and knowledgable man. He was sharp, attentive, and willing to listen to my story before telling his. And this was what he told me. Contrary to the popular literature, the women I met in Kansas, and what my endocrinologist in Boston told me, my treatment would be very, very different. And this, this is a great thing! Like all cases, a full thyroidectomy is in my future. However, the chance of losing my voice is only 1%. Due to being so familiar with the process, this is pretty much what he does, he has a license to administer the radioactive iodine in smaller doses as an outpatient procedure. The kicker of his method is that my seclusion will be 2-3 days, not weeks! Yet this wasn't the best news of the day. The best news was that he will begin me on replacement thyroid hormones, Synthroid, the day after surgery. That means that I won't have to become Hypo for the two months between my surgery and my full body scan! The reason for this being that instead of starving my body of hormones so my Thyroid Stimulating Hormone (TSH) level rises to the point that the full body scan will be effective, he will simply give me a shot of Thyrogen which will mimmic the TSH levels in my body. This also means that in the future I won't have to go off of my hormones for check up scans. Due to starting on the Synthroid so soon, Lupo said that it would take him anywhere from 6-12 weeks  to get me regulated. 

6-12 weeks, not 4-6 months! In that one sentence Dr. Lupo had given me back half a year of life. I was ecstatic! 

Two days ago was Dr. Deems. There, again, I was blown away by the caliber of doctor I had found. on average, Dr. Deems performs anywhere from 130-170 thyroidectomies a year. Of all those surgeries, he has never had a patient lose their voice on accident, nor has he had patients have unnecessary nerve damage in their neck due to the removal of lymph nodes like the women I met in Kansas had. As well, the surgery would only take 90 minutes and require an incision only half as big as I had previously been shown. To add to this, instead of stitches he'll use dermabond, a kind of superglue. After the outpatient surgery I'll barely need a tylenol for the pain. Instead of being bedridden I'll simply have to lay low for two to three days and act like I hurt my back for around 10 days. No heavy lifting, exercise, jousting, that kind of thing. Baring complications, the process should be... easy. 

Needless to say, this back to back news has been great! The only thing really left, for now, is a surgery date. For that, we're waiting for pathology results from a national authority on thyroid pathology named Dr. Maslow in Arkansas. 

ETA?? Next Monday or Wednesday. Stay tuned for a final date!

What Now???

Seriously, how do you respond to that? 95% of these things are suppose to be benign. I'm a 23 year old healthy male. I'm in the middle of finishing Seminary as I try to get into Medical School. I have a girlfriend. I have a full-time job at a hospital. I have cancer... as the jungle goes, "One of these things is not like the other."

The answer, you read.

During what I now refer to with the direct article as "the Call," my physician gave me several websites to look at for general information. It was here that I learned of the details of my treatment. The doctor had told me that a total thyroidectomy would be needed due to the bi-lateral presentation of nodules and I would most likely require what's known as Radioactive Iodine Treatment. After gleaning all the information that I could from these websites and a thyroid cancer survivor Stephani's sister, Jessica, graciously set a meeting for us with, a uniform average treatment began to form. I have to be honest here, for all fear that accompanies the word Cancer I was comforted by the kind of cancer I had. Honestly, I lucked out. They say that if you're going to get cancer, get thyroid cancer. And, if you're going to get thyroid cancer, get papillary thyroid cancer. The reason for this being that it is both highly treatable with replacement hormones and the radiation used is hyper specific, of which more later.

I would have my thyroid removed and six weeks later I would undergo Radioactive Iodine treatment. The surgery itself is a fairly straightforward surgery. The risk on the other hand is that I would become mute due to the proximity of the nerve that innervates my vocal chords. After it, I would have a scar from side to side across the base of my neck and possibly up the side of my neck if the cancer had spread to my lateral lymph nodes. The Radioactive Iodine is a gift from God. Due to the thyroid being the only part of your body which uptakes Iodine in appreciable amounts, the radioactive Iodine would only attack my thyroid, thus being in a whole other category as the generalized chemo. Key to this idea is that if the cancer had spread it would not be lung or bone cancer but thyroid cancer in my lung or my bone. Thus, if it had spread, the RI would kill it. However, the RI would be an event. I would begin my stay in a led-lined hospital room where a physician wearing a hazmat suit would administer a pill that would subsequently make me set off a geiger counter. I would remain there for around three days disposing of everything I touch, taking four showers a day, and unable to be in any proximity of another human being. After those three  days I would return home to solitude. Again, no one would be allowed within three feet of me, nor allowed to be in an enclosed space (read: car) for longer than an hour, nor allowed to use the same dishes or bathroom as me. This was to last for two to three weeks. It is here that I would finally undergo a full body scan to see if I had any metastasizing cancer cells elsewhere in my body. Yet this was not the worst.

The worst part of this whole process was that from the date of my surgery till the date of my full body scan I would be what "they" call Hypo-thyroid. Having no thyroid to speak of I would be absent the T4 hormones it produces and the subsequent T3 which is created and you and I currently use. As you can imagine, due to the Thyroid being the "gas pedal" of the body, this has its side effects. For the duration, and until the replacement hormones kicked in, I would be absent of all energy. I'd constantly feel like I had just ran a marathon and was walking down stairs. I would sleep, a lot. I'd be moody, with fits of anger and irritability. Most of all, I'd be mentally dull. All this together constitutes what thyroid cancer survivors have lovingly termed "Hypo-Hell."

All in all, from the day of my surgery to the day of recovery and ability to return to my life, it would be a four to six month recovery. This was my expectation... that is... until last friday when I met Dr. Mark Lupo and yesterday when I met Dr. Daniel Deems.

So... I have Cancer.... ... .... boom.

No, seriously, I do.

I know that I have spoke with many people face to face, however, quite unfortunately, I have not had the opportunity to speak with the majority of those interested enough to click on this blog. For you, and partly for me, this is this my story quite literally as it unfolds. Many of you have agreed to think, help, and pray for me, Stephani, and my family as we go through this time and for that I thank you. I doubt that there is a proper way to express gratitude for such beneficence. Thank you. Seriously, Thank you.

Anyways, as a way of introduction, this is my story:

Approximately 4 years ago, while a sophomore in college I noticed a lump at the base of my throat. As I swallowed and coughed I would notice that it moved up and down with my Adam's apple. Being slightly worried at such a thing I visited a local physician to ask him about my new "little friend." As he manipulated my neck he told me that it was most likely a growth of cartilage; I had most likely hit my neck in young age and had simply never realized the growth. Being rather busy with school, work, volunteerism, and friends, I took the information with a shrug and gratitude. I was simply too busy to devote attention to what was most likely cartilage.

Now, fast forward four years...

In October of last year due to a chance introduction from a mutual friend I began chasing an amazing girl named Stephani Painter who was a new Student at my Seminary. She is smart, funny, beautiful, AND... a nurse. As the plot thickened we began to date, wahoo!, and began the gambit of all the newly dating questions: hot or cold, cats or dogs, do you play any instruments, and do you have any stupid human tricks. Okay, so the last question isn't exactly normal, but it came up. After I learned of her insanely flexible hands, it's true, I decided to point out to her my unusual throat. Once revealed she immediately went into nurse mode and asked me to get it checked out again. After refusing for some unknown "I'm-invincible-and-show-no-pain" reason I finally relented, and I am still thanking God that I did. It is here that we found ourselves two months ago.

I began to see a primary care physician in Boston in April that sent me to an endocrinologist after an ultrasound which was scheduled for June 14th. Being unwilling to wait two months for an appointment I badgered the office until I received an appointment for the last week in April. There I learned that I had not one but two nodules on my thyroid, one 8mm in size on my left lobe and one 3.8cm in size on my right lobe. These nodules, though being well encapsulated, a good thing, presented with strong blood flow and micro-calcifications, a bad thing. My endocrinologist at the time showed concern and ordered a Fine Needle Biopsy on June 13th. Being only the last month in April I again refused to wait that long and badgered the enocrinologist's office until a cancellation landed me an appointment for May 4th where I finally had my biopsy.

Up to this point Stephani and I had been worried that this entire process would occur while she was overseas for the summer and subsequently unable to be with me for the process. Now we found ourselves with my family in Florida for a meet-the-parents week and it was here that I received the call. While hunting sharks teeth with Stephani and my parents on Thursday May 12th I found myself sitting on a rock in a parking lot and listening as my endocrinologist detailed to me how my biopsy had returned signs of abnormal cells that suggested the presence of Papillary Thyroid Carcinoma, Thyroid Cancer.

I... had cancer.