The Survivor Circle Award recognizes a person living with cancer in the Chicago area who has devoted his or her time to helping others who are living with cancer in their community. Schrank was diagnosed with lacrimal cancer on December 20, 2006, while serving as an active duty Marine. His doctors at Northwestern Memorial Hospital in Chicago attempted to remove the tumor and save his left eye, but were not able to remove all the cancer. Schrank then decided to sacrifice his left eye for a chance at being disease free. He underwent intensity modulated radiation therapy at Northwestern Memorial Hospital and proton therapy at Midwest Proton Radiotherapy Institute in Bloomington, Ind., a year later. In late August 2009, Schrank found out that his proton treatments were successful.

Since his diagnosis, Schrank has founded C.STAR, a support group that not only focuses on cancer patients but provides a special focus on the support needs of a cancer patient’s family and friends. He said the inspiration for the organization was his own support team that consisted of his fellow Marines, doctors, and loved ones.

“The way that these people stepped up to support me, going far beyond any reasonable expectations, is what I wanted to inspire in other survivor teams,” Schrank said. “I watched as my support team struggled to deal with my condition and how we had to utilize mutual support in order to grow stronger as a team.”

Schrank also devotes his time to giving back to the hospitals where he received treatment. He visits the Lurie Cancer Center at Northwestern Memorial Hospital and the University of Chicago Medical Center Cancer Center weekly to speak to cancer patients and their support teams. While receiving proton treatments in Bloomington, Ind., he spent his free time speaking to the parents of pediatric patients and providing them with support resources.

“Gunnery Sgt. Schrank is a hero. He has not only served his country as a Marine, but he has served his fellow cancer patients by providing them with support and guidance even though he too was struggling with the disease,” Tim R. Williams, ASTRO president and a radiation oncologist at Boca Raton Community Hospital in Boca Raton, Fla., said. “Cancer can affect anyone any time – even a U.S. Marine in prime health, and Gunnery Sgt. Schrank shows that with the right outlook even something as terrible as a cancer diagnosis can be turned into a positive situation. I am very proud that Gunnery Sgt. Schrank is the Survivor Circle Award winner this year and that we get to share his story at this year’s Annual Meeting.”

The Survivor Circle was established in 2003 as a way for ASTRO to give back to the cities that it visits during its Annual Meeting. Each year, ASTRO partners with two local organizations to establish relationships with patient advocacy organizations and radiation oncologists and to raise money to support these groups in their work to help people living with cancer and their loved ones. This year ASTRO has partnered with Halos of Hope and Gilda’s Club Chicago.

The ASTRO Annual Meeting is the premier scientific meeting in radiation oncology and attracts more

than 11,000 attendees of various disciplines, including oncologists, physicists, biologists, nurses and other healthcare professionals from all over the world. The theme of this year’s meeting is “Radiation Oncology in 2020,” and the program will focus on the future of the specialty and the goals for advancing radiation therapy over the next decade.

For more information on Survivor Circle, visit www.astro.org/Patients/SurvivorCircle.

For more information on ASTRO’s 51^st Annual Meeting, visit www.astro.org/Meetings/AnnualMeetings.

ASTRO is the largest radiation oncology society in the world, with more than 10,000 members who specialize in treating patients with radiation therapies. As the leading organization in radiation oncology, biology and physics, the Society is dedicated to improving patient care through education, clinical practice, advancement of science and advocacy. For more information on radiation therapy, visit www.rtanswers.org. To learn more about ASTRO, visit www.astro.org.

Its three days until the Urbanathlon! 

Music has always been a big part of my life. Studies have shown that music and rhythm resonate on a level deeper in humans than speech. As I complete the urbanathlon, I’d like to know what music resonates with you. So, email or comment your most meaningful songs, and I’ll put them on my playlist that I use when I run the urbanathlon.

Its not important what kind of music it is. Maybe it makes you belt it out, maybe it makes you dance, maybe it makes you cry, maybe it makes you sit and think. Just tell me what music, when you hear it, does something to you, affects you on a deeper level.

You like death metal? Send it. Hip-hop or classical or classic rock or 19th century sitar hits? Send it! Ska or punk or easy listening? Send titles to protonmarine@yahoo.com, and I’ll download it and run to it.

I’ll publish the playlist on the sidebar as it fills up.

Thank you so much to everyone who has donated. Individual contributions are critical to a successful launch of our website on 1NOV. As this concept develops, our funding will move away from individual contributions and into event planning, and then hopefully corporate sponsorship. If you are thinking of donating any time in the next year, this initial phase of development would be the most effective time. Thank You for supporting C.STAR!

www.cstar.bbnow.org

I cannot tolerate leaving any opportunity less than fully developed.

I had planned on expanding the scope of my cancer support efforts after some other things had resolved themselves in my life, but with the advent of this award we cannot afford to miss this opportunity.

C.STAR CONCEPT                                                                       

We are completely overhauling our service efforts into a new, 503(c) certified nonprofit corporation named C.STAR: Cancer Survivor Teams, Activism, and Resources. We are doing this in a hurry, because the plan is to aggressively market our new organization during this year’s ASTRO conference, where I will be speaking and meeting with a lot of key professionals who will be able to provide a big push for this organization.

We have already formed an all-star team of site designer, site administrator, art director, finance officer, and marketing department. Their dedication is inspiring, and I feel blessed to have them on board.

This new charity will focus on the same two functions: building survivor teams and guiding survivors through the myriad of cancer resources. This new organization, however, will be truly groundbreaking in its delivery. We will be focusing almost exclusively on user generated web based content. Without giving away the details, here are some of the functions we will be featuring:

1. Cancer resource generator: a cancer survivor can enter specific information about their age, gender, diagnosis, and location, and the website will guide them through a personalized suite of support organizations that will address their unique needs from both the national and local level.

2. Survivor Team Wiki: similar to the Wikipedia concept, we will develop a basic how to guide for shaping the different roles of every unique Survivor Team. All users will have the ability to modify and add to the database, transforming it into a completely accessible comprehensive guide.

3. C.STAR forum: users will be able to post and respond to various questions about anything on their minds.

4. The cancer rant and rave section: tentatively titled “why I hate cancer” and “why I love cancer” this section will give users the opportunity to post anything on their mind. The rant section will surely be cathartic, and I am curious and excited about the rave section. Adversity is always an opportunity to grow.

There are more features under discussion, but these represent the foundation of what this project will deliver.

We have the site to develop, promotional materials to print, t-shirts to design and print, and other things to get done prior to the ASTRO convention.
We need your support to get this off the ground in time to take advantage of the media exposure.

HUMAN SACRIFICE: 2009 URBANATHLON                                                                                               

I am running the 2009 Men’s Health Urbanathlon on 17OCT2009. It consists of 11.76 total miles of running with six different obstacles including:

1. A stutter step tire drill: 70 tires
2. A wall of monster truck tires to climb: 10 monster tires
3. An actual wall: 1
4. Taxi hurdles (think Dukes of Hazzard or Magnum P.I. across the hood): 5 hoods
5. Monkey bars built out of truck frames: 12 bars
6. Marine Hurdles: Yep! They’re named after us (it’s the last log series on the o-course, Marines): 5 logs
7. The Soldier Field Stair Climb: don’t know what to say about this one, so here’s a picture:

536 stairs! and if you’ve ever had the quality seats at the top of Solder Field (unlike my spoiled brothers), you know they get progessively taller the higher up you go. It’s going to be a backbreaker, but hopefully you get an idea of how dedicated we are to C.STAR. Come up with your own mathematical equation, or use this one:

11.76e + 536x + 70y + 12z + 10a + 5b + 5c + d = your donation

I’ll run, climb, jump, hurdle, slide, and destroy these things, if you would donate to our amazing new nonprofit concept.

http://www.menshealthurbanathlon.com/course.cfm

For three years, I have been hearing “If you ever need anything, anything at all, just let me know”.

It’s time.

Help me to transform this experience that I have endured into a new concept in non-profit support. I have learned so much about how to deal with cancer, and the only responsible thing to do with this capability is find the most effective way to transfer this knowledge to other people. Instead of a website that describes a charity’s services, this will be a website that is the service. I am so confident that we are on to a truly amazing concept that has the potential to profoundly affect the quality of life of cancer survivors worldwide. I know that sounds grandiose, but I can assure you I am keenly aware of my responsibility to back up these bold words. I believe in this concept, and I believe in the people who have stepped up to make it happen.

Join us.

Donate to C.STAR, and consider it an investment in cancer support. You have the opportunity to be one of the people who made this possible, to have been there when this project began.

We are operating as a 503(c) charity, so your donations will be tax deductible. We will issue receipts as soon as we have them printed.

Here is the link to our donation site: http://cancerstar.bbnow.org/ This site uses paypal as its secure delivery method. If you do not have a paypal account, or wish to send a check, please email me at protonmarine@yahoo.com and I will send you the information. Please note this website does not represent the style or content of the C.STAR project, it is merely a temporary fundraising site in the interim before our project is launched.

The winner was to be notified by September 19th. As that day sprinted into view, sauntered on by, and disappeared limping over the horizon, it took hope with it. But Beth from ASTRO had other plans. Apparently, she’s not the kind of person bound by deadlines and obsolete “dates” (kidding!). She waited until my birthday, September 22nd, to notify me that I had been selected. It was a serendipitous coincidence.

To say I was happy is like saying the Columbus, OH chapter of our kin doesn’t care too much for USC (they spell it with an “F”?).
I told myself for weeks not to expect anything, and that just being considered was a great honor. I kept telling myself that I had no idea what decision process or criteria were. To learn however, that the award is decided by an at large vote of key members of ASTRO, deeply affected me. I have so much respect for the members of this organization, it felt very out of place to be honored by them. I am humbled by their benevolence.

I talked to Beth at ASTRO after she left me a message notifying me of the award. It was very clear that she is an amazing person with a genuine passion for cancer survivors. The phone call was truly a cathartic, as I relayed the details of our struggle with this disease, and she correlated the details of my experience with other people she has come in contact with in her 6 years at ASTRO.

I will be accepting the award on November 3rd at 0930 in a ceremony at McCormick Place. The ceremony takes place during ASTRO’s annual convention. If you would like to attend, please let me know and I will put your name on the guest list. Guests will also have the opportunity to tour the convention that day.

I can hardly describe how excited I am about this development. I’ve been involved with cancer related industry and activism quite a bit over the past few years, and I plan to use this recognition as an opportunity to increase the scope of this commitment. We’re already waist deep in the process, and its going to be exciting. I am being intentionally vague as we shape the details, but stay tuned for some exciting developments to follow. Soon!

Enjoy this. We’ve been through so much. It is critical to sit back and let the positivity saturate your being when you have the opportunity. Soak in the love: recognition by a group you respect and admire + the chance to acknowledge the amazing work done by oncology professionals + using the recognition to help other survivor teams = a fine day.

Force Multiplier.

Pain free!

In the midst of the storm, it’s hard to imagine it will ever stop raining. When I reread my earlier post, it’s hard to understand how bad things had gotten, since things have gotten so much better. Now that the storm has passed, it’s just as hard to relate to its presence. Let’s hope its passed, and that we are not in the eye.

I met with Dr. Thornton yesterday, and it was quite amazing. First the medical information:

I am currently cancer-free.

This is definitely more good news, but the news is far from definite. This will be the second time that I am declared cancer-free. Unabashed celebration is wholly appropriate, but keep an unwavering eye on the castle gate.

The correct context should be “so far so good”, as it has only been a few months since the completion of treatment.

Dr. Thornton is unique in that he refuses to look at my scan reports prior to looking at the actual scans. He is the only doctor that does this. Very few doctors look at the actual scans at all, most read the radiology reports and interpret their diagnosis from the report. The radiology reports are a sort of cheat sheet so that each doctor doesn’t have to perform their own interpretive analysis of the scan pictures. The only doctors that actually look at the scans are Dr. Thornton and Dr. Pelzer. The correlation to expertise is irrefutable. Or, maybe they are just old. Or old school. Either way, they sometimes do disagree with the reports, and they have always been right when they dissent.

So, I’m back to having no cancer, thanks to the precision of proton therapy. I live my life 90 days at a time, from scan to scan.

Steady as she goes.

There is reality show level drama at MPRI, which is the proton facility that treated me. MPRI is undergoing what Dr. Thornton describes as a “hostile takeover”. The particulars:

• Dr. Thornton started the MPRI project 14 years ago. It began with 6 years of fundraising, 2 years of expiraments, and 6 years now of treating patients.
• MPRI is a part of the University of Indiana Proton Physics Research Program.
• The Medical School at UI originally opposed MPRI, as it would not fall under their control. They were overruled by the then-university president, and MPRI was funded and built.
• Since then, MPRI has been wildly successful, as patients have moved to Bloomington from all over the world to get proton treatment from Dr. Thornton.
• The medical school now wants, and has gained control over MPRI from the physics department, with the election of a new university president.
• The director of the medical school wants to clean house at MPRI and staff the center with personnel from the medical school, who are qualified to treat patients, but have no experience in planning or executing highly technical proton therapy.
• As a result of the political infighting, 50% of MPRI’s staff have been fired, and another 25% refuse to work for the new regime and have quit.
• MPRI, and Dr. Thorton, have been unable to see patients for months. Dr. Thorton feels he cannot safely treat cancer patients without his team of experts.

The bottom line is: because of the power struggle at the University of Indiana, cancer patients are being turned away. They have the capability to treat them, but cannot because of the shortage of personnel created by the firings.

This situation is unconscionable. Dr. Thorton informed me that I was the last major patient treated at MPRI (also the most complicated treatment they had ever designed). If I had sough
t care a few months later, or if the conflict at MPRI had begun a few months eariler, I would have been refused treatment. Proton therapy was my only hope to survive cancer, and patients are being turned away over what seems to be a contest of ego.

This situation underscores the critical need for more widespread proliferation of proton therapy treatment. It is clearly superior to conventional radiation, and yet the development of further treatment facilities is strangled by healthcare organizations ability to cooperate on the considerable expense of a proton facility.

MPRI will reopen. However, in its new form, they will no longer treat ‘complicated’ patients, of which I would be the trophy (both contemporary and ancient). If I were to show up at the new MPRI, I would be refused treatment. It doesn’t make financial sense to keep the high level physics and medical experts on staff when they represent a relatively small portion of revenue. I consider it a tragedy, however, to dismantle what would be the only recourse in this country for complicated head and neck tumors, and complicated pediatric tumors. The key to the proliferation of proton therapy is that it must be financially viable. However, what is the point of revenue generation, if not to make room for a few miracles?

I’m working on it.

Hold your cards, we have a possible bingo. In case you haven’t figured it out yet, my pathology reports came back, and all of the lymph nodes were benign (get it…B9…c’mon people).

In the past three years that we have been undergoing this struggle, definitive news is extremely rare. Results are always relative. Meaning, I get scanned and it says I am clear, but we all know that is only a positive indicator, that there can be a lot of bad things just below the measurable surface. On the other hand, when bad things show up, we are never quite sure how bad they are, or whether action has to be taken. The insubstantial nature of these developments are the primary cause of stress in our battle with cancer. It is the overwhelming of the unknown that is the hardest to battle.

That’s not the story today! When the surgeons reach inside your head and pull some stuff out, and then the pathologists tear it into tiny pieces, just looking for insurgent cells, there is nothing relative about the results. I don’t have cancer in my lymph system! I don’t remember the last time we got such definitive good news.

It does a lot to buoy my spirits in the case of the other news I have: pain. I am in more pain right now than I have ever been in my life, to include 5 surgeries and 70 something radiation treatments. Dr. Pelzer must have really got after it with a butcher’s blade and a soup spoon, because my body is very unhappy. In five surgeries, I have never taken more than a few of the pain pills that I am inevitably prescribed. At this point in this recovery, however, I can’t function if I am not on meds at least every two hours. I haven’t eaten more than a cup of soup per day since surgery. It is just too painful to swallow.

BE ADVISED: I am not whining! Self-Pity is a progressive disease that we cannot afford to contract. It would be crippling. I am just relating my surprise at my current condition.

The most painful thing I have to go through every day, ironically, is taking the pills. It takes me a good three swallows just to get each pill down. Eating is so painful that the only reason I do it is because I know it is essential to recovery. If it were acceptable, I would really prefer not to eat, but I know I need some calories to adequately heal. I just hope this passes soon.

I wasn’t ready for this pain, because the procedure was supposed to be so simple and non-invasive. However, since the target node could not be removed, several supporting nodes had to be found and taken out, and that must have done quite a bit of collateral damage. I am just so surprised that the level of pain is so much higher than any of the more radical procedures and treatments that I have undergone in this process.

My spirits are high, however, as I forgot what it even feels like to get unqualified good news. Pain is pain. It hurts, but we suck it up. Good news feels so good the joy cannot be denied, and to leave good news uncelebrated would be a tragedy.

Happiness is the reward of ignoring pain. Its worth the work.

I’m sick of being in the hospital. I wish I was writing uplifting words of motivation and optimism, but that’s not the case. I am laying here in an anesthesia induced stupor, waiting for the day when someone will tell me whether the lymph nodes they removed represent the aggressive spread of cancer to other parts of my body, or just some wacky effect of the obscene levels of radiation I have voluntarily absorbed.

I hate being here. I am tired of the needles, the drugs, and the boredom. This is why they call it surviving, and not living.

Might as well let everyone know how I feel about the “fight” against cancer. It’s not a fight at all. You no more fight cancer than you fight gravity. The “fight” is to make every day its best while you are in such grave danger, to not let it take over your soul. That’s the fight. The cancer part is a mere mortal toss of the dice. Of course, I eat all the crazy healthy foods, get plenty of sleep, and reduce my exposure to carcinogens, but that isn’t the same as a “fight”. I am surviving, not fighting. If you were thrown overboard in the middle of the ocean, left to fend for yourself, you would never say you were fighting the ocean. If you made it out of that peril, your reward would be to die of something else later in your life. You wouldn’t be so presumptuous as to claim to have “beaten” the ocean, but merely to have survived. It may seem like semantics, but I can assure you it is a different mindset. Every day I am surviving this cancer. Some days are easy, and some days are hard. Today is hard.

You see, the surgery wasn’t as easy as Dr. Pelzer thought it would be. As it turns out, the lymph node that they intended to remove was obscured by my carotid artery on that side. For those who don’t know, the carotid artery is the primary blood vessel that transports oxygenated blood from your heart to your brain. If the surgeons would have touched or manipulated it in any way, the chance of me having a stroke as result would have been very high. So instead of taking out the suspicious lymph node, Dr. Pelzer decided to take out the four lymph nodes most closely associated with it, and get this, at no additional cost to me! That’s a bargain you don’t see every day.

Since spread of the cancer to my lymph nodes would represent systemic cancer metastasis, the other lymph nodes should also show signs of cancer, if that is indeed the cause of the growth.

So now, as I lay here doing my drugs, I wait. I wait to see if I am still surviving. It seems ridiculous sometimes to try to imagine the danger my life is in. If you ever wondered what it feels like to be in great peril, it simply doesn’t. Maybe this is what a dragonfly feels like as it flies across the highway: life is good. I am currently very happy. I feel very healthy. I ran the Soldier Field 10-miler a few weeks ago. I deadlifted 505 lbs a week before that. I feel great, so why does life have to get in the way of that?

Let’s just focus on the pressing issues, and fill in back story as necessary:

I’m having surgery today.

I’ve been up all night, because I hate going to sleep before surgery. I know that I am going to be unconscious most of tomorrow (today), and I just want to do all the stuff I won’t be able to do for the next couple of days.

Why am I having surgery (again) you may ask? Because one of my lymph nodes is growing, and Dr. Pelzer thinks it is easier to just take it out rather than attempt to divine its nature through further imaging and diagnosis. Cut first, ask questions later.

My growing lymph node could be a sign of metastatic spread to my lymph system, which would be the first step in distant metasteses. Every doctor has told us that metastatic spread is highly unlikely with the type of cancer I have, but we continue to defy accurate prediction.

Dr. Pelzer will remove the lymph node and send it to pathology to determine whether it is growing from cancer or as a result of damage from the proton radiation therapy.

It is not lost on me that when I attempt to write about this, I find myself choosing phrases that I’ve used in previous entries. “Under the Knife Again” is how I feel, but I’ve already used that phrase, furthermore, that particular word sequence itself indicates a recurring phenomena. The bottom line is, I am frustrated to be going to the hospital again, to have surgery again, to recover again.

Of course, things could be far worse.

The reason we are jumping straight to surgery with very little imaging is that this procedure should be very simple, and it is far more accurate to biopsy than to use an MRI and attempt to infer what is going on in an area of my body that has seen such serious trauma. There is radiated tissue, scar tissue, artificial bone, titanium, iridium, and weapons-grade plutonium (allegedly) in that region, so it is best to cut first and ask questions later. Measure twice, of course.

Here’s a video of what the four Schrank boys were up to on 22DEC of last year. This should tide everyone over until the big radiation recap post coming up soon.

Until then…

http://www.youtube.com/watch?v=g_QAF4iLEJA (or double click on the video bar to the right)

Enjoy!

After partying the afternoon away with Bob and Joy on Monday, I returned home from MPRI and slept from 1600 until 1030 the next day. I was up for a bit to have something to eat, but let’s just say that’s about 17 hours of sleep. I really needed it, and I thank you all for the opportunity to get so much rest. 

Like Oprah, I have a list of favorite things (although, fittingly, my list exceeds hers this year in both value and utility). Of the hundreds of things present, here are my favorites:

9. This snowman pot holder. I spent a few moments lost in its dichotomy while heating up some of Joy’s bean and sausage casserole. 
It’s for handling hot things, yet is illustrated with cold imagery. A play on irony? 
It’s an insulator, with a picture of another insulator, depicted adorning a man made of snow. An examination of the futility of existence?

The casserole should have made the list, but there was none left at time of judging.

8. The bottle of “Jarhead Red” wine. Continuing in a prestigious line of fine military branded spirits (military special rum, anyone?), I expected this bottle to rival any pre-1994 bottle I had ever sampled. I don’t mean aged wines, by the way, I mean I expected it to taste like something I drank in high school. It didn’t disappoint. 

7. These bowls are awesome. I don’t know why, by the way, I just like them. I guess it’s the shape. Plus, they’re blue. 

6. “Betty Crocker’s Living with Cancer Cookbook”. I really appreciated seeing this, for two reasons. It means the food I am eating out of the fridge was prepared with this in mind, and I can keep this to use for my own cooking in the future. Thanks. 

5. The artwork generously on loan (indefinitely) from Ava and Aiden. One is clearly a train, and the other a wonderfully rendered Santa Claus. They both say “I am a master of this medium, capable of blowing your mind at my whim”. Neither work is trying too hard, as if to say “my art pours forth from within my soul at its own rate; it is neither to be drawn out nor pushed forth: it must simply be”.

Obviously, the works flirt with the idea of a hyper-realization of self. They refuse to be defined by irrelevant classification. Are they modern? Postmodern? These pieces dare you to dream, and then call your dreams stupid. They are both stunning and intimidating.

Thanks childrens.

4. The “Hello Kitty” bathmat. Thanks. It’s nice to have a reminder every morning about what’s important in life. Namely, Japanese animation from Sanrio.

3. These two are especially important. I am so thankful for the opportunity to get quality rest. Brand new mattresses will do a lot to enhance my ability to recover every day. Coupled with the high thread count sheets (2.), and it’s a recipe for recuperation. It means a lot to me, and I really appreciate the effort.

1. What else could be the number one most notable item in the Bloomington, IN estate? Three powerful words: plastic. Christmas. flamingo. While not competing with #’s 2 and 3 on a functional level, its symbolism and spirit are what carry it to the top of the list. It says “I am a unique creature, my outward appearance is a direct reflection of what’s inside (beta carotene), and my posture is both unique and unexplainable” and “I am a secular Christmas activist”. 

I can truly say that my new digs reflect the character and class of the surrounding community. This depository of goodwill (literal and figurative), is filled with borrowed items from many families. I can feel all the good energy that has travelled with them. Thanks to everyone for making this happen. I can’t think of a better place to recover and regroup.

Quest for Proton

Getting this proton therapy locked on has proven to be an administrative nightmare. It has been almost six weeks since the endoscopic tumor resection. It took a full two weeks to get TRICARE onboard with approving this very expensive type of radiation treatment, along with its accompanying procedures. Next, there was much drama about getting the specific neurosurgeon booked to install the 2mm stainless steel markers in my head.

***by the way, don’t worry; I’ll still be able to keep my head shaved. Not everyone can rock the bald head (Medeiros); it would have been a shame to lose such a precious natural resource. The bb’s will be countersunk flush with my skull. ***

Between the Midwest Proton Radiation Institute (MPRI), the Bloomington Hospital, Dr. Haddad (Skull BB Installer Supreme), and TRICARE, Dr. Haddad’s late October vacation, MPRI’s Thanksgiving and Christmas vacations, I really thought I was waiting to die because of administrative delays. Not acceptable!

Who comes to the rescue (once again)? Dr. Pelzer. He seems to have the ability to solve all problems with some sort of special surgeon-to-the-stars ‘easy’ button. Whenever things became absolutely unacceptably cluster-fied, I ran to Dr. Pelzer like the little brother that I am. He fixes all with just a phone call. It’s amazing.

With several direct interventions by Dr. Pelzer, things are finally taking shape. Within this week: BB’s will be installed, dental form created (to hold me in place, remember), mask 2.0 made (like the last one, remember?), and CT scan uploaded to the specific software used by MPRI. After all that, it takes 2 to 3 weeks for the physicists to design the particular weapons-grade hydrogen solution.

Serendipity

Given the critical nature of this treatment, we were prepared to wait for the right solution. However, all of this waiting over administrative inefficiencies has proven to be stressful. I am hopeful about the effectiveness of proton therapy. Usually, when someone is faced with a one option situation, that option tends to suck. It would seem, however, that this option shows promise.

I neglected to mention the serendipitous coincidence of this particular treatment. There are five proton centers in the United States. One is not yet operational. Two of them would not have taken me as a patient (proton centers are usually booked, so every new patient accepted is taking away an opportunity for treatment for someone else. The facilities at Harvard and Florida do not accept previously radiated patients for this reason). A fourth facility has the equipment, but their senior radiation oncologist has left to pursue a position elsewhere. As the director of MPRI, Dr. Thornton is the only physician in United States, and possibly the world, who has both the expertise and the authority to treat me. It is an incredible coincidence that he is located right next door in Indiana.

Furthermore, he has agreed to take on the kind of case he describes as “challenging enough to keep him up at night”. (Do not falsely correlate the challenge to risk. The challenge derives from the complicated and unprecedented nature of the treatment, not from danger to me. It would be like someone gave you thirty pages of long division to be manually calculated. The task is well within capability, but contains a lot of extra computations. My head is like thirty pages of 5,436 ÷ 27)

Make Your Own

There are no words to describe this kind of good fortune. The closest approximation would be the kind of luck defined as “the-opposite-of-getting-one-of-the-rarest-forms-of-cancer-ever-recorded, and-at-a-ridiculously-young-age-luck”. Maybe this incredibly rare yet optimal opportunity exists as a result of powerful universal tendency towards equilibrium. If not, I need to start gambling long shots, because fate owes me some short odds on long money.
Do not, however, mistake that last statement as self pity. Pity is not tolerated, much less solicited, in this battle. Life holds no guarantees, and suffers no entitlements. We have found our self in the current position by aggressively pursuing all options, exploiting all opportunities, and clinging tenaciously to a proactive mindset. Luck threw down a gauntlet two years ago. It’s been picked up, and wrapped around a defiant fist. Fuck luck.

I am filled with so much power and joy to be writing these words. There hasn’t been enough good news lately, so its important to celebrate these victories fully. All preliminary frozen section results from surgery show no visual evidence of tumor. The damage appears to be leftover from radiation. The full pathology analysis won’t be ready until next week, but probability is (finally) on our side.

What’s the mission? Re-Mission!

It is very possible that there may be microscopic cancer cells hidden in the tissue, which would only be revealed next week after the full pathology report, but the initial analysis reveals no evidence of this. Its absolutely appropriate to be happy right now. We celebrate the great results and are mindful of the possibility manifesting the near future. Plus, that leaves a little more room to celebrate again next week!

SURGERY

The surgery was amazing. It took a lot longer than I expected, as there is considerable setup time for all of the technology used in the endoscope procedures. I was unconscious a lot longer than expected, which is the primary variable in recovery. The day started with an MRI, featuring these weird things stuck to my head:

The lifesavers actually serve as reference points for the endoscope. They do an MRI with these things stuck to my head, and then upload it into the endoscope imaging equipment. These wint-o-green transponders let the surgeons know exactly where they are in my head. Its similar to the way gps satellites determine a position on earth. Wint-o-green gps satellites on my head. Outstanding.

Now, a bit of ranting: I have never had a negative health care experience at Northwestern. Every doctor, technician, and nurse has been competent and professional. The shutout is now over. I was treated by the worst nurse I have ever dealt with while in the recovery area from surgery. I don’t want to get into too much negative energy, but the only way I can describe her is both mean and rude. I told her how much pain I was in, and she mocked me. She’s the reason I still can’t talk today. I am a Gunnery Sergeant of Marines, a cancer survivor, and I have experienced strength and pain that few people can understand. I have spent my life being physically and mentally strong, and have dedicated my service to using this strength to help people who need it. I have never felt helpless before in my life, as I did laying in that hospital bed, isolated by curtains, with a person who refused to help me.

I do not get hysterical or emotional when I am in more pain than I can handle, but that is no excuse for this “nurse”. She repeatedly denied my requests for basic care, as she was “too busy”. She refused to contact my doctors when I asked her to, as I wanted someone else to know what I needed: relief for my throat. I was intubated for a while, and am guessing that the surgery staff had to manipulate the tube quite a bit, because I woke up in a lot of pain. I have been intubated many times, and never been in any pain, much less debilitating. It got worse as the hours wore on. I must have asked her ten times for some food or water or just an ice cube. I could barely breathe, and she accused me of being dramatic.

I don’t take pain killers, I suck it up. I prefer the pain to the loss of control that comes from narcotics. I felt abused, neglected, and disrespected. My doctors showed up and wondered why I had not been treated, as I had no food or drink restrictions. Even after they left, she couldn’t find the time to get me anything. I hate complaining, but I felt it important to make a formal complaint to the hospital. If I ever see her again, I will blow her house down for sure. I was so angry. I will never be helpless again.

SENSATIONAL

No more negativity. Do you remember that I stated that no matter the outcome of the surgery, my trigeminal nerve would be severed and I would lose all feeling on the left side of my face/head?

I have lost no feeling.

By virtue of my years of Catholic school education (K-12), I am confident that I can declare this my first miracle. Only one more and I qualify for canonization! So, if you find a piece of bread that bears my image, you should hold on to it. Its bound to be an appreciating Ebay asset. Qualifying for sainthood has got to make up for some other things. I should at least be breaking even.

I can feel my face. It feels like victory. I have lost a lot, but we won this round. This victory tastes so sweet. I can’t even hardly describe how happy I am today. Broken and bruised, but happy. My only hope from this procedure was to stop guessing and have real information about my health; to wrestle control of my life back from this disease and stop wondering what my future holds. I couldn’t risk hoping for such a positive result. Although I have enough sense to withhold a bit of celebration for next week’s final results, I am high right now. Who needs painkillers when it feels so good to be alive? You have to take the pain in order to have the opportunity to feel this good. I am exhausted, sore, my head is pounding, and I can’t speak. I wouldn’t change a thing.

DR. VOKES – MEDICAL ONCOLOGIST AT UoC

So off I go to see Dr. Vokes, the medical oncologist at the University of Chicago Hospital. It was very exciting, as Dr. Vokes is the pioneer and champion of combined modality therapy. Combined modality therapy is a range of treatments that utilize the synergy created from undergoing radiation and chemotherapy concurrently. Under Dr. Vokes at U of C, this usually means radiation twice a day, as well as chemotherapy on the same day, for five consecutive days, followed by nine days off. This cycle is usually repeated five times.

Here is Dr. Vokes: http://www.uchospitals.edu/physicians/everett-vokes.html

And combined modality therapy: http://www.uchospitals.edu/news/2000/20000413-vokes.html

Dr. Vokes was considerably more concerned about the situation. He agreed with the wait and see opinion of Dr. Agulnik, but suggested a shorter interval of 6 weeks before re-scanning. We decide to split the difference and schedule the scans for 8 weeks from the last set. The most important development of this appointment is that Dr. Vokes informs us that we should be consulting primarily with an ENT surgeon. He highly recommends Dr. Stenson, who we make an appointment with.

DR. STENSON – OTOLARYNGOLOGY SURGEON AT UoC

A few days later, we see Dr. Stenson. Our appointment with her was powerful. She has an aggressive outlook on cancer that is very compatible with mine. Instead of waiting, she prefers to biopsy immediately. A biopsy is when a small amount of tissue is taken and then tested for cancer cells. Her mindset appeals to me. “Why are we waiting” she says. According to Dr. Agulnik, the reason for not biopsying is that the affected tissue is so small that the risk of a false negative is high. A false negative result would be when the surgeon misses the affected area and takes tissue to be tested that is “good”. This tissue will be tested for cancer as negative, but is in fact false because it was taken from the wrong place. However, Dr. Stenson and I agree that a false negative result does us no harm, we would simply be in the same close monitoring situation as prior to the biopsy. So we should go for it.

Given this new aggressive diagnostic stance, a biopsy is scheduled with Dr. Stenson for the following week (last week). Dr. Stenson is planning to go in through my nose, as well as make an incision on the left side of my face to get to the affected area. We were so impressed with Dr. Stenson that we decided to utilize her as our primary physician for treatment going forward. I felt a tremendous kinship with her, she seemed genuinely personally motivated to make/keep me alive and healthy. Her intensity, honesty, and competence are qualities that are very valuable in the situations we are facing.

DR. HARRRAF – RADIOLOGY ONCOLOGIST AT UoC

We next met with Dr. Harraf, the person in charge of radiation treatments at UoC, for the first time. Dr. Harraf echoed Dr. Stenson’s aggressive stance on the situation. Pending the results of the biopsy, we discussed treatment options such as combined modality therapy, proton therapy, and others. The level of close cooperation between the doctors at UoC on post surgical treatments was very impressive.

DR. PELZER – OTOLARYNGOLOGY SURGEON AT NMH

The reasoning of Dr. Vokes to consult Dr. Stenson led me to schedule an appointment with Dr. Pelzer before the biopsy (still with me?). I have a tremendous respect for Dr. Pelzer, and it was very important to consult with him before proceeding. It took a few stressful days to get the appointment, but Maria did a wonderful job of getting us in to see him as soon as I was able to get a hold of her.

DR. CHANDRA – ENDOSCOPIC SURGEON AT NMH

After the appointment, prior to leaving the hospital, Dr. Pelzer called me on my cell phone and politely asked me if I could come back up to the 17th floor for a few minutes. “Absolutely” is my reply. Upon returning, Dr. Pelzer introduces us to Dr. Chandra, who was coincidentally in the area. Dr. Chandra wants to discuss my upcoming biopsy. He shows us several places where he wants Dr. Stenson to pay special attention, and outlines the reason for his concerns. I am trying to absorb all of the complicated information, when it occurs to me “why would I attempt to be the middleman in this exchange of information, and why would I have two different surgery teams (one for the biopsy, and for the surgery if necessary)? The right decision at this point is obvious. We are going to have Dr. Chandra, Chandler, and Pelzer do the biopsy endoscopically at NMH. It was hard to not go with Dr. Stenson, since she had been so impressive with her genuine commitment to my health, but the NMH team is the most appropriate capability for the situation.

What a ride!

OTHER INFORMATION

The only other bit of information was a PET scan, which is a nuclear medicine scan. They inject you with a mixture of sugar and radioactive chemicals. Cancer cells are greedy with food, so they look for places where more sugar is going than should be. The scan was completely negative, which is great, but it is not a definitive diagnostic in that it doesn’t show microscopic tumor.

I have also had an additional MRI of the cervical spine, as I have had some numbness in my right index finger in the past week. The MRI is precautionary, and will most likely show that nothing is wrong. I just did it so that I could have one less thing to worry about.

THANK YOU!

I know this has been a lot of information to digest at one sitting. I will try to update more frequently so as to make this more enjoyable (and shorter) to read. Thanks for everyone’s continued support.

This one is right after surgery. You can see the drain balloon thing on my shoulder. It’s connected with a plastic tube inserted into my head. This lets the fluid that would cause swelling and pressure on my brain drain into the balloon instead. It has to be drained a few times a day. The fluid is also monitored to make sure it doesn’t contain any brain fluid, which is bad.

This is me roughing it in the hospital. I found many cool cars for sale which I am not going to buy. I also have been emailing another cancer survivor named Matthew who has become my inspiration for when I am feeling weak.

We are strong!

My new zipperhead. You can also see the drain tube coming out. The staples will be taken out on Monday to minimize scarring. They will be replaced with dermabond, which is superglue for skin.

The dynamic duo, hard at work once again.

Whew! Its been a bit since I’ve last posted, but I promised myself I wouldn’t post if there’s not much to say. No news is goods news in the world of cancer remission. I don’t like to bask too much, because we haven’t accomplished so much yet. In my expert medical opinion, there hasn’t been enough time for cancer to come back and be detected. I hope that doesn’t sound pessimistic, I’m just settling in for the long fight. We have dominated the short fight, but now its time to campaign. So, while I am extremely happy to have 4 consecutive rounds of clear MRIs and CT scans, its too early to let our guard down. 2008 will be the critical year to see if our radically aggressive surgery was enough, meaning this year will be the most likely for something bad to happen, not last year. Stay focused: Relax, Sleep, Be Healthy, Relax, Sleep, Be Healthy.

Command support has been indefatigable (recruited that word from a CerCom). All progress in the Marine Corps situation has been preliminary on my end, but there should be developments to report in the coming months as far as that situation goes. We are still “cautiously optimistic” about the fate of my Marine Corps career. The information warfare initiative in full effect:

http://www.leatherneckmagazine-digital.com/leatherneckmagazine-share/200707/?pg=52&pm=2&u1=friend

and this one from Marine Corps Times:

this is another one from Trackdaymag.com (scan about two thirds of the way down):

http://www.trackdaymag.com/i?a=93

As an epilogue to the above article, I worked my way back to the intermediate group at the end of last summer, so try and keep the pity in check.

SURGERY

The final surgery (hopefully) in this journey will be on 5FEB. Dr. Galiano, an associate of Dr. Fine’s, will be replacing the section of my skull that was removed with an aritificial bone material called Porex. Porex is a relatively new material that has the previously unavailable characteristic of becoming semi-organic. Meaning, the tissue around the Porex will grow into it, effectively making the new bone material integrated with the rest of my head. Previously, an artificial bone implant (probably made from some sort of silicone) would stay in place as a foreign body only. A silicone implant is more of a cosmetic device, with very little added structural value, but the Porex will nearly replicate the strength of my skull prior to having portions removed. Outstanding.
The surgery should only be 4-5 hours, and I will be in the hospital for only one overnight. How jacked up was last year when that seems like a cakewalk? Having my face peeled back under general anesthesia and fake bones installed to replicate my skull has become a “minor surgery”. Walk in the park indeed.

This is a big deal. This has been hanging overhead for months now. I didn’t realize how much underlying pressure this has been causing. It feels like someone has progressively added weight to my pack. The increases are undetectable, but their sum takes its toll. I had no idea how heavy this pack had become until I shrugged it off my shoulders.

What did I do to celebrate? I went for a run in that wicked thunderstorm today. I laughed as the rain fell on my face and mocked the lightning’s pathetic display of power.

We are invincible.

As I continued running like a fool in the rain, I thought about what it means: Cancer Free.

Every breath is a victory of its own. Every inhale tastes like victory and every exhale smells of success.

Get off me, Death, I have things to do. Move along, Reaper, you have no business here. I’ve got a whole bunch of unchecked boxes and only 70 years (give or take) to get it all done. Time to get busy.

If you’ve never had the pleasure of having a laser through your head, here is your big chance:

Okay, so the day starts by leaving physical therapy and heading to Northwestern Memorial via Lower Wacker Drive, which is absolutely the greatest street in Chicago. It can be a little scary at times, and I don’t know if I would drive it alone at night, but it is definitely the downtown expressway during the day.

The entire trip to the hospital is spent quantifying exactly how much you don’t want to go to radiation. Everyday. It seems like the dread would pass, but that is not the case. It is just so counterintuitive to purposely subject yourself to something so damn destructive. Everyday. So, no, you never get over it, and you futilely practice circular logic all the way to NMH everyday. I don’t want to go, but I need to, its so bad for my health, but it pays off later, they are going to hurt my head again, but it sure beats having cancer…

Next, you park at the parking garage ($9 a day for six weeks) and head into the hospital.

The ride to the Lower Concourse (Northwestern Memorial Dungeon) is in the absolute nicest elevators ever.

This is where the the radiation/gamma knife center is. “Gamma Knife” is such a sweet word.

The wait time is somewhere between 0 minutes and two hours for the radiation room to be available. There are no such thing as medical appointments, there are only “recommended show-up times”.

The radiation techs, either Josh or Megan, comes out to the waiting room to let you know they are ready for you. Sad to say, but Phil Collins Lover Tech no longer works in radiation room “A”. That was a one day pleasure only.

Would you enter a room with this sign? :

Apparently, I lack the common sense to go the other way, because this sign tells me I am in the right place.

You lay down on this machine:

And then they put the mask over your face and upper body. The mask is so tight that you can feel your heart beat over the whole upper half of yourself. thumpthump. thumpthump.

You make some attempts at small talk while the techs line up the sighting lasers located directly above you and to your left and right. These lasers are like those little laser pointers. They make sure the machine is aligned properly on the reference points marked on the mask.

The little red laser is the sighting laser directly overhead. The machine 45 degrees right in this photo.

The techs leave the room (who would want to be in here with all this radiation?) and shut the 6-inch steel door. Josh, per our SOP, presses play on the cd player before he walks out.

Its dark.

The first notes of Metallica’s “One” play.

The machine starts its intial operation checks and makes some weird noises as it cycles, plotting your downfall with its mechanical clicks and beeps.

Waiting for it…

The buzzer sounds as the laser sends radiation into the space where the eye used to be. The laser pulses on and off, and the buzzer indicates when the radiation is being administered. The time between pulses varies from a half second to several seconds to a minute or so. Its predictable, however, in that it’s the same program every day. By this time, you know the sequence by heart, which is important since breathing has become an obsessive exercise in imaginary self preservation. Meaning, no doctor or technician or website has ever mentioned anything about holding your breath when the radiation is ripping through your head, but it just seems like the thing to do. Not breathing (or any movement) has become pavlovian when the buzzer sounds. If I don’t hold my breath I imagine that I will be blind or brain damaged because of my lack of discipline, which is ridiculous. Thank God the Marine Corps taught me how to “power breathe” in the swim tank. Power breathing is used to keep your lungs inflated to increase buoyancy in a water survival situation. Just imagine a normal in and out respiration in a fraction of the time, with the extra moments spent with full lungs. Back to the walkthrough…

Buzzz….powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe….buzzz….

The machine directly overhead.

Oh, I forgot to mention the overwhelming taste from the radiation. Sometimes it is the taste of copper, sometimes it is the taste of burnt meat. Its also predictable, however, meaning the same pulses everyday produce the same tastes. By the way, Dr. Mittal claims this is impossible, and that he had one other patient complain of the same thing 15 years ago. He doesn’t believe me or that other person, however, and insists radiation is odorless/tasteless. I am sure he is quite mistaken. Its not a subtle imagined sensation brought on by the sensory depravation of the treatment room, its an overwhelming metallic or carbonic event that drowns out any other scent or taste, and disappears immediately when the buzzer dies. Anyways:

Long pause, the machine talks to you with clicks and whirring gears, instigating a futile curse at the mechanical beast for doing its job. At the same time, you have a moment to swallow, blink, and breathe normally; although you still feel your own heartbeat outside your skin while “One” continues to play.

Thumpthump…thumpthump…thumpthump

Break’s over!

Buzz…powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe

This repeats itself over and over through the first 4 stations of the radiation program. The laser starts at about 45 degrees to the right of center for the first series. After each series of pulses, the machine moves to the next station. The second station is directly overhead, then 15 degrees left, etc. “One” ends during the middle of the third station, and is followed by “Sanitarium”, also by Metallica. I listen to the same two songs everyday, since it has become part of my breathholding, nonblinking, nonsensical OCD radiation routine.

Each station is the same except for the last two. For some reason, on the first pulse of the last two stations, there is a new sensation. It lasts only moments, but there is a blinding white/blue light that fills the entire field of vision no matter if the eyes are open or closed. Its pretty freaky and never loses its ability to unnerve. Its sickening to think about the fact that the radiation is coming from 90 degrees left, and that this must mean it is passing through the good eye. Dr. Mittal says this is also impossible, and that the same patient 15 years ago complained of the same thing. Awesome.

He was fine by the way.

The final station in the program finishes.

Buzz…powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe….buzzz….powerbreathe….buzzzz…..powerbreathe…..buzzz….powerbreathe

The lights come on, and the techs come over and unscrew the mask, freeing you. The heartbeat is no longer heard and felt.

Its time to go. Time to go plug your nose with Vaseline because its bleeding and break out the special moisture cream that feels oh-so-refreshing on the face because its irritated once again. And today its worse than yesterday, which was worse than the day before and so on.

I swear I’m not complaining. There are other people in the waiting room everyday who have it worse. This is nothing that can’t be handled. Its just therapeutic to share the experience. I don’t know how else to explain why I don’t want to go everyday. That feeling never disappears. It’s the craziest thing to allow this every day. And I’m not losing my mind with all the compulsive habits during treatment. Understand, it’s the only way to participate in the radiation. To have a job to do. Other than holding my breath and not blinking or moving, the rest is being done to me. Those habits prevent focusing on the impulse to rip that plastic shroud off and leave radiation, never to return.

Yeah, I know, “its important for my continued fight to remain cancer free and healthy”, I know. I’ve heard it. I know “its been shown to significantly reduce the percentages and 3 and 5 year survivability increase significantly and words like unlikely and highly unlikely blahblahblah so on and such”.

None of that changes the fact that everyday I stick my head in the microwave and push the “popcorn” button five or six times until it quite literally makes me sick. That doesn’t seem very healthy.

Life goes on though, and that’s the whole point. My woman is still beautiful, motorcycles are still fast, and Jim Beam still makes everything okay (doesn’t it?).

Thanks for reading my way-too-long post.

All of this should clear up over the next few months, starting Friday when I have my last radiation treatment. All of this just amounts to a pain in the a**, but nothing that can’t be handled. Its just stuff to be endured.

My (unintended) takeaway: The body is the strongest, toughest thing on the planet. It can be abused, it heals, it grows, it doesn’t give up. It’s the mind that’s weak. Something to think about when you feel a little pain…

PinCushion

Based on recommendations for TMC (traditional Chinese medicine) from several oncology physicians, we went to see Dr. Guo in Chinatown to start herbal therapy and acupuncture. Seriously, Dr. Guo is the man when it comes to TCM in the U.S. He is one of the first people to bring TCM to this country, and definitely the pioneer when it comes to adapting TCM to western medicine. Take a look here, its very interesting:

http://www.liferising.com/about/guo.html

Our appointment with Dr. Guo blew my mind. I don’t know if I am quite ready to accept everything about eastern medicine, but that guy has too much respect in the western medical community to be dismissed. I am very excited to begin his treatment. Here’s our general treatment plan:

1. Emotional – A well balanced emotional state will lead to health and the defeat of cancer.
2. Sleep – more sleep, more sleep, better quality sleep, more sleep, more sleep (both eastern and western doctors have said this is the most important thing I can control in my fight)
3. Diet – a variety of foods is crucial to provide the largest spectrum of nutrients for health. This also includes herbal therapy, where I am now taking 5 different types of herbs, mushroom-black tea, and miracle cookies (actual name). Herbal therapy does not interfere with western medicine, and mine is designed to boost my natural immune system as well as mitigate the destructive effects of radiation therapy.

I could go on and on about the different thought process TCM presents, but here is the main thing:

1. Cancer is a symptom: meaning that a condition existed that caused the tumor. Dr Guol is only interested in my diagnostic images from before all of the surgeries. He says he will treat the underlying problem that caused cancer, while western medicine removes the tumor. Awesome!
2. Dr. Guol doesn’t consider TCM to be alternative medicine. He considers it medical science, period. Therefore, he will treat me as a cancer patient. Meaning, he doesnt really concern himself with Dr. Pelzer’s efforts, only with healing my body of cancer and its underlying conditions. This is super cool because I don’t care if the Americans or the Russians get to Berlin first, only that one way or the other Nazi Germany is wiped out (check your history).
3. The coolest part: TCM IS SO EMPOWERING! I really like the fact that it presents me with an opportunity to heal myself. All of my western treatments have happened to me. Cancer happened to me, surgeries happened to me, radiation happened to me, and I just endure it. Now I have an opportunity to improve my own health by applying herbal therapy, eating a variety of foods, being super active (as I can), and sleeping, sleeping, sleeping. Its just nice to pick up a weapon and participate in the fight.

After meeting with Dr. Guo, I next went to see Jun, who is Dr. Guo’s acupuncturist. She divided my treatment into two parts: immune system enhancement and shoulder therapy. She began by sticking needles in the top of my head, bridge of my nose, stomach, right hand, knees and my feet. It was very relaxing after my intial apprehension, but I wasn’t yet a believer. Then she says she wants to work on my shoulder. I thought I should roll over, but she says its not necessary. She tells me to put my shoulder in the position where it hurts, which I proceed to do. Then she starts working a needle into my left calf, which loosens up my shoulder and takes away the pain. Amazing!

More on this later, but radiation sucks. The first few days weren’t so bad, but it is really starting to accumulate in the form of fatigue. No big deal, not freaking out, but its not cool at all. They are nuking my brain every day. I’m putting together a walkthrough for everyone, but this post is already too long.

Big Thanks to DVision! Chris at DVision has been super helpful to spend a ton of money on several pair of glasses and sunglasses for me. I am trying to make some lemonade about how paranoid I am about protecting my other eye, and expensive designer eyeglasses is a nice start. Big thanks for their help in selecting great stuff.

Next post will be about radiation (Sunday?), and also about Dr. Pelzer getting me in to have my shoulder treated by the Bears team orthopedics physician (Dr. Nuber). I just hope I get Urlacher results and not Grossman/Orton therapy!

I am going to start posting from the hospital, since we estimate we spend 20 hours a week between 8 different doctors there, and I’m usually too tired from radiation to post when I get home. So more info in the near future.

1. Today started with a scary situation. A strange, yellow-brownish watery liquid was coming out of my left nostril to start my day. Great. We immediately thought it must be spinal fluid, which is one of the worst symptoms following a craniotomy. Spinal fluid leakage would indicate brain trauma, which is bad.

2. However, after arguing with Mary Ellen (Dr. Chandler’s nurse) about the fact that “no it is absolutely not blood or snot!” (WHY DON’T THE “PROS” LISTEN TO THE DAMN PATIENT?”) we were told it will wait until our next neuro appointment, which is tomorrow afternoon.

3. Then, a genius suggested that it is probably some sort of drainage from the bellybutton fat that was used to fill my sinus when they reconstructed my head. This seems to make the most sense, as Dr. Pelzer called me later in the day and, after a series of questions, came to the same probable conclusion. We op-checked it by having me keep my head between my legs while on the phone. Since this didn’t induce more fluid to drain, it is probably not coming from my brain. Yay.

4. This situation ate up the whole morning, so no physical therapy, in case anyone was awaiting the outcome of the PT throwdown ’07.

Off to radiation!

1. Radiology oncology was running behind today, so we had to wait a couple hours to start my first treatment, which is fine since I am so patient in nature. That’s a joke at my expense. Haha.
How unpleasant is radiation treatment you ask? Here’s my totally accurate (perspective error aside) narrative [internal dialogue in brackets]:

Operator: okay Mr. Schrank, just lay down here and we’ll put this cushion under your legs and this other one under your shoulder like you requested to keep you comfortable.
Me: okay, thanks buddy!
Operator: Okay, so now we are going to put you in the mask [Iron Maiden…EXCELLENT!] and bolt it down [movement = bad] and then we are going to shoot lasers [air quote Dr. Evil “laser”] into your head from five different angles to minimize tissue damage in any one area.
Me: okay, thanks buddy
Operator: You like Phil Collins?
Me (muffled from mask [IronMaidenExcellent!]): mffHellNo!mfmfmPhilCollinsSucks!mfmfmmfmf
Operator: okay, I’ll put in the greatest hits and turn it up
Me (muffled in the mask): NOOOOoooooo……
Operator: …I see your true colors shining through…

—– break in story: Phil Collins is bad enough, but Phil Collins doing a cover of Cyndi Lauper? It’s like washing down rancid fish with someone else’s vomit…hard to figure out which is worse, but there is definitely a synergy that makes the net effect MUCH worse than the sum of the parts. And yeah, he was actually singing along. I couldn’t decide which I wanted to drown out the other. Back to the story ——

Operator: sooo sooo sooodio! [WTF does that even mean?]
Me: [someone end this, its not worth it, I’ll take my chances with the cancer…]

2. This goes on for the longest 15 minutes of my life. Tomorrow we will be listening to the Slipknot 9.0:Live album during treatment, because that is what I am bringing. The nice thing is that the Phil Collins took my mind off the fact that I could actually taste the radiation, which is flavored like a blend of chicken and my own flesh cooking.

So far not much in the way of side effects. This is to be expected, as Dr. Mittal has explained that radiation is cumulative. This means that side effects and the probability of complications will increase each day over the next six weeks.

Tommorrow is the rescheduled PT Throwdown ’07, as well as PCL Tech (Phil Collins Lover) music fest ’07. Viva La Fiesta!

More updates as events warrant! Below is a picture of PCL Tech (he operates the “laser”)

1. As before, 5 days a week for 6 weeks
2. Dr. Mittal (radiology oncologist) will examine the tissue graft just prior to radiation to make sure I am healed enough. If not, we will push radiation back. There is no hurry to start, if we have to wait a week or two, so be it. We’ll probably start tomorrow, though.
3. The only real concern I have is damage to my good eye. I feel pretty strongly that if this occurs, I will stop radiation and take my chances, since I have no detectable tumor right now. Dr. Mittal feels the dosage is low enough that this is “very unlikely”.
4. I will lose my left eyebrow from the radiation, and some hair on the back of my head where the radiation enters. This may or may not be permanent.

I can’t stand my physical therapist (trying to get my shoulder up to 100%). Here’s why:

1. SHE DOESN’T LISTEN TO ME. I know myself physically pretty well. In two visits, I have had two episodes of being irritated when I have to repeat myself over and over.
2. Her answer to everything is “stop doing stuff”. My response is “do your job”. Don’t worry, physical therapist, I’ll make you do your job. You will get creative and find a way to therapy me without me stopping all activity. I spend enough time on the couch.
3. The other PT’s listen to me. In fact, I like everyone else in that office EXCEPT my assigned therapist. She hands me off to other people and all is well. She is careless and seems to have no passion for her work, while everyone else is happy to finally have a patient willing to work his ass off to heal. Don’t worry, lady, I’ll fix you.
4. My next PT appointment is tomorrow, and I am planning on going ala carte. I will demand all the stuff that I now know is effective (the thing that runs electricity through my shoulder), and she will not be allowed to stick me on an elliptical machine for 30 mins to chew up half my rehab time. We are on our way to being 3/3 for PT altercations.

Dr. Pelzer continues the positive news about my treatment. Its hard to quantify my prognosis, but he is very optimistic about my future. One thing is for sure, enucleation(eye removal) has been the key to victory. No regrets whatsoever. Most importantly, Dr. Pelzer is certain none of the patients in previous studies had the level of surgeons that I am fortunate to employ. He says that Dr. Chandler was able to remove more tissue than he (Pelzer) could alone because of his neurosurgery expertise. Specifically, he was able to remove bone from the socket, and resect the optic nerve all the way back to where it connects to the other optic nerve, behind the eye socket. Dr. Pelzer is “wildly enthusiastic” that I will continue to be cancer free.

Dr. Mittal (Radiology oncologist – in charge of my radiation treatment) also saw me on Wednesday. We did the mapping process of the area to be radiated. The pictures below are of the mask they made of my head, neck, and shoulders. The mask is made of plastic mesh melted on to my face, and is used to immobolize me during treatment. Movement during radiation would be “bad”. They use a CT scan to map the area to receive radiation (and more importantly the areas to not receive radiation). Radiation treatment (IMRT) will begin in three weeks (14March). The side effects of radiation that we are worried about are: nauseau, fatigue, damage to the good eye, radiation to my brain, and radiation induced cancer. The first two are fairly certain. Radiation damage to my other eye or brain have “extremely low probablilty”. The chance of a radiation induced tumor from this type of treatment (IMRT) is .07%. Dr. Mittal says I would have to be extremely unlucky to develop cancer from the radiation treatment. I laughed and told him I have one of the most rare cancers recorded, so what the hell is .07% to me? Ha Ha. Cancer joke.

Dr. Fine saw me on Thursday and is happy with the progress of the tissue/skin graft. There is one little spot that is taking its sweet time to heal, but it should be “fine” by the time radiation starts. If not, radiation may have to be delayed until the graft heals.

2. The Joy of Joy Cooking is in full effect at 15th and Halsted. We’ve got meatloafs. We’ve got soups. We’ve got blueberry muffins, stewed carrots, and more. More food is coming on Sunday from Mom and the Round Lake chapter of the Schranks.

3. Heart of a Marine is an organization dedicated to providing financial assistance to military personnel with unmet needs. Nancy Diduca (SSgt Diduca’s mom) is a member, and has sent a Visa check card to cover expenses we have incurred from treatment. Dealing with this for the last three months, a lot of relatively small costs quickly add up (i.e. $9 – $20 a day for parking X 6 weeks of radiation, etc). They have also left the door open for any other expenses in the future. Their generosity is humbling. It is even more humbling to consider the vital support they have provided to Marines whose needs far outweigh ours. Thanks SSgt and Jeanette Diduca for introducing us to this organization. The link is: www.heartofamarine.org

4. NOW FOR THE BIG NEWS: Dr. Pelzer and I had to work our butts off to donate my eye. Cancer is normally disqualifying for organ donation. It was a big deal to me to be able to donate, however, and Dr. Pelzer worked with the director of the Illinois Eye Bank to ensure my eye could be donated, since the cancer was not actually in the eye itself. Here is the result (click to enlarge):

I can’t exlain how much this means. It’s such a big deal that someone could benefit. We are pinning this cloud and beating a silver lining out of it when one is not apparent. One more reason that surgery was the right decision. We know now that radiation would not have been enough to cure. My eye would have ended up being removed after radiation failed, and the radiation damage (a sure thing for the left eye) would have prevented organ donation. Fortune smiles on us.

Big Thanks to Joy and my Mom for all the food! We have been supplied with homemade goodness a couple of times already, and I am expecting another round of fridge resupply this weekend. Its made life so much easier here to have stuff to eat and not worry about cooking or grocery shopping. Go Team!

From the latest round of appointments:

1. Dr. Fine (who needs a nickname when you are a plastic surgeon named “Dr. Fine”?) is overall pleased with the progress of the tissue graft in my left eye socket. It changes color once a day to keep me guessing as to how its healing. Last week it, was actually a nice pink color, only to change to a series of greens and yellows this week. Dr. Fine says this is normal and expected however. We are concerned about the inner corner of the graft, which has yet to fully take. The worst case scenario is that it will take a little longer to heal. Dr. Fine thinks the window to worry about the skin/tissue graft failing has passed, and that it is now only a matter of time. He removed most of my stitches, and will remove the rest this Thursday.

2. Dr. Chandler continues to deny my demands and tell me that my activity level needs to remain at approximately zero (I am allowed to walk – yay). Since I am not getting the answers I want, I’m calling Dr. Pelzer today to see if he’ll give me a different answer. If mom says no, go ask dad!

3. I am becoming a professional napper…Bosco and I have several nap-offs daily…especially since its really the only thing that I can do to speed up this recovery. Trust me, I’d much rather be out doing something…damn doctors.

4. The only pain I have now is a little bit in my left shoulder, and these random wild headaches. They are pretty crazy…basically debilitating head pain that disappears as fast as it starts. I almost laugh when its over because it is the wildest thing I have ever felt. Feels like someone is banging pots and pans in a megaphone inside my skull (especially since my hearing goes out during these attacks), and then its gone! Thats the only time I am medicated, which is a nice improvement over the high-all-the-time days. Overall, I feel great. I actually feel totally recovered, I just need my skull to catch up with my spirit.

5. Just to tidy this up – Mom won the Dr. Symanski nickname contest: Dr. Stacy “Commendable Occulo-Mass Eradicator” Symanski. Congratulations!

As it turns out, the information previously posted about my optimistic commissioning outlook was premature. My future in the Marine Corps is once again in jeopardy. There is no doubt that I will attack this issue with unbridled enthusiasm and tenacity, but the prognosis is uncertain to be sure. I’ll post more details on this when appropriate. We are planning for all eventualities, but its not an issue to be handled at this moment. First comes the healing.

Overall, the situation is fantastic. I have come to the conclusion that I am glad the second surgery was “unsuccessful”. My situation if the second surgery had worked would be to have a left eye of questionable ability, but also close to a 20% chance of recurrence of cancer. It is quite possible that radiation would have further damaged vision in that left eye. Given that my current chance of recurrence is near zero, I like where I’m at now. The recovery is the easy part. I am focused on getting better, and the relief of not worrying as much about cancer now or in the future (knock on wood, cross fingers, etc) is worth losing my eye.

I swear I have yet to feel sorry for myself. I think I am Very Lucky. There aren’t many people who get this intimate with cancer, who get this close to the worst imaginable prognosis, and then get to walk away. I have been blessed with great support and superb medical care, and I am thankful. I am fortunate to have 24 hour medical care at home, and that has made this so much easier. Given the dire circumstances, I couldn’t be in a better situation than I am right now. Thanks!

Next post will be after my thursday appointments…

1. Dr. Pelzer (otolaryngolical surgeon) relayed the final pathology report from the craniotomy surgery today. He couldn’t be more pleased with the results. He doesn’t think there is any cancer left, even on a microscopic level. We are going ahead with radiation therapy on principle alone.

2. The pathology report indicates that the cancer had started on some of the nerves in the eye socket. This could have been very serious. We’ll never know how seriously my life was in danger, but this information alone completely validates our decision to remove everything.

3. We also saw Dr. Chandler (neurosurgeon) today. He is very pleased with my recovery from the craniotomy. He thinks I shouldn’t do much for a while, but we’ll see if Dr. Pelzer will override that next week.

4. We saw Dr. Fine (plastic surgeon) earlier this week. He is also very happy with the way my head and face are healing. He removed the covering of the stitches on my head, and also removed the padding on my “eye”. I still have a gauze dressing on my “eye” that has to be changed every other day until next week. He will remove the stitches next thursday.

5. I talked to Dr. Pelzer about the long term characteristics of my treatment. Basically, we will do another CT/MRI a few months after radiation to determine whether I am officially cancer free. Dr. Pelzer has agreed to stay on as my doctor for the “long haul”. He has affirmed that no matter where in the world I am, he will obtain my CT/MRI scans electronically or physically and interpret them to ensure I am continuing to be without cancer. He didnt seem to be concerned whether Tricare would support this or not. Dr. Pelzer has been our biggest asset in this whole process and continues to pay dividends.

I feel really good right now. Physically, its a long recovery. Mentally and emotionally, though, I am in a great place. I think the worst is over until radiation therapy. Most of the shoulder pain is now gone, and every day I wake up feeling better than the day before. The recovery part is proving to be much easier than the anxiety before surgery. I have something to do now, so I am attacking it. I take this recovery seriously. I’m focused on getting back to a normal life as soon as possible.

Thanks everyone for all the support, and especially to Joy for the food. If you don’t know, Joy makes the best chicken pot pie in the world.

1. Surgery was 10.5 hours, and Dr. Pelzer feels very positive about the results. We exceeded the high end of his expectations.

2. My head feels fine, but it appears I have a frozen shoulder. I am working with the doctors to make sure my shoulder is included in my treatment plan.

3. The craniotomy recovery has a very significant effect on my endurance, which basically means I sleep most of the day.

4. I am really not in the mood for visitors.

5. I am so thankful for all of the support  received thus far. Many different people have occupied seperate but necessary roles in providing mental and emotional support. Thank you.

6. I just learned today that my Uncle Mike has passed away. Our prayers go out to everyone, and we are going to do everything we can to provide support. A wonderful example has been set for us, and we will do our best to live up to the support that we have received.

7. Marines: the Petersens need our support. Standby for word on what we can do to help them. Here’s Sgt Petersen’s (Corey) blog: www.welovecorey.blogspot.com

The background: Anyone who has ever lifted with me knows I have shoulder issues with heavy weights. I have to warm up extensively to avoid chronic overuse injuries. Also I can only lay on my left elbow for about 5 minutes before pain sets in and I have to shift. So, 10.5 hours immobilized for neurourgery causes some amazing pain. Open Cranial surgery requires the patient to be completely immobile, so I was locked down pretty tight. Here’s the script between myself, Margaret, and the other nurse in the recovery room, coming up from anesthesia (keep in mind I am out of my mind on anesthesia)

Me: AAAAAAAAHHHHHHH!
Nurses: what’s wrong?
Me: I’M GOING TO KILL YOU M*****F*****S!
Nurses: what’s wrong Mr. Schrank?
Me: PAIN! PAIN! I”M GOING TO KILL YOU M*****F*****S!!!!

(repeat this a few more times, and the nurses thought my head was in pain. They gave me every pain killer they could think of, to no avail because my shoulders were still strapped in)

Me: AAAAAHHHHH! PAIN PAIN PAIN!!!! I AM GOING TO KILL YOU ALL!
Nurses: you can’t hit the nurses.
Me: I would never hit you…I’M GOING TO KILL YOU
Nurses: where does it hurt?
Me: MY SHOULDER, MY SHOULDER
Nurses: oh, you should have told us, we can totally fix that
Me: ARE YOU ON MY TEAM?? ARE YOU ON MY TEAM??
Nurses: what?
Me: ARE YOU ON TEAM SCHRANK?!?!?!
Nurses: yes, we are on your team
Me: ok

Totally true script, and then apparently I calmed down, or maybe all the drugs finally overcame my nervous system, or maybe I just needed to know they were on my team, since I didnt see any T-shirts.

1. The next few hours were spent trying and failing and trying again to build a position of rolled and taped blankets and pillows for my destroyed shoulder. I don’t want to sound dramatic, but its the worst pain I have ever felt. Worse than when I shattered my other shoulder in high school.

2. Over the rest of the evening, I patched up my relationship with Nurse Margaret. As it turns out, she is truly fantastic.

4. With all that support, I have no choice but to rock this recovery. I am so focused right now. This morning I got out of bed and sat in a chair. That 4 seconds completely exhausted me. This afternoon, I walked a complete lap around the hospital under my own power. I only returned to my room because my shoulder was really causing some big pain. It’s go time for this recovery.

5. It has been such a relief to get through this surgery. My spirit is buoyed by my support system (all of you), and Dr. Pelzer’s satisfaction. He is so happy with the results, that we have put low-dose radiation back on the table for the next step in possible treatment.

Cancer wasn’t prepared to go to the extent that Team Schrank was to win. I am dragging this disease to the woodshed. There is plenty of pain left, but we are downhill to victory now.

1. There are three surgeons conducting the operation: Dr. Pelzer, Dr. Fine, and Dr. Chandler. Dr. Chandler is the neurosurgeon, he will be cutting my skull open. Dr. Pelzer will remove all of the soft tissue from my eye socket, to include my eye and all cancerous tissue. Dr. Fine is the plastic surgeon, he will be doing a microvascular transplant to install tissue in the space where my eye used to be. Dr. Fine will also be closing all incisions in order to minimize scarring.

2. The surgery will take from 12-16 hours in total. Due to the length of time under anesthesia, I may not be lucid for several days after surgery.

3. I will be in Intesive Care following surgery, so I will be unable to use my cell phone. I am not sure yet if I will have internet access.

4. Hopefully, I’ll be lucid for the Super Bowl. GO BEARS!

2. I had a phone meeting with Dr. Pelzer (cancer surgeon) today. Due to vacation and scheduled surgeries, his next available surgery appointment is 8JAN. Dr. Pelzer is stepping up for the Team, however, and has decided to do the surgery this Thursday (28DEC).

3. He is coming in during his vacation so that we don’t have to wait any longer. I can’t even describe how much I appreciate him doing this. He has a profound appreciation of Marines and I am reaping the benefit. As of today, Dr. Pelzer is throwing his weight around to secure some operating room time as well as the services of Dr. Few.

4. Dr Julius Warren “War on Cancer” Few will be making the first incisions of the surgery to give me the best chance of keeping my left eye and as much of that part of my face as possible.

5. Dr. Few will also stay on during Dr. Pelzer’s removal of the tumor to perform the reconstruction of my eye, head, and face when Dr. Pelzer’s exorcism is complete.

6. True to Team Schrank’s warrior ethos, Dr. Augulnik will exploit the victory and pursue the enemy by fire, maneuver, and maybe some radiation therapy.

7. You guys continue to support me so I continue to thank YOU. I really appreciate all the good energy. It makes a big difference, and is directly reflected in my continued positive attitude. Except 2nd Lt. Medeiros, who quit on my workout this morning. It seems TBS has made him soft. SSgt Diduca and I will remedy this situation most riki-tik. In all sincerity, a big thanks to everyone.

Dr. Few (scroll down)
http://www.northwesternplasticsurgery.com/02.htm

Dr. Pelzer
http://www.oto-hns.northwestern.edu/Faculty/Pelzer.htm

4. Dr. Few’s recent addition to Team Schrank has created quite a buzz (and more than ample jealousy) amongst the plastic surgery department at Northwestern Memorial. When asked to comment, Dr. Few said “It’s definitely the greatest achievement of my illustrious career, and at the same time very intimidating. I feel like I have been asked to wallpaper the Sistine Chapel. I only hope I can do it justice.” Dr. J is about as hot as it gets in the plastic surgery game right now, coming off impressive victories in Justin Medeiros’ recent synthol calf implants and collagen lip implants.

Next update comes on Tuesday, have a Merry Christmas!

Next update will be after my meeting with Dr. Pelzer tomorrow. I may also have the CT tomorrow if they can get me in. Go Team.

1. I have adeno-carcinoma (cancer) in my lacrimal gland (tear gland). This diagnosis is a result of extensive diagnostic imaging (CT scan, enhanced MRI, and ultrasound), and finally by a pathological examination of a biopsy performed by Dr Symanski.

2. This type of cancer is very common. It is the same type that composes breast cancer, colon cancer, and lung cancer. However, having this cancer in the lacrimal gland is very unusual.

3. I will see my oncologist (cancer doctor) tomorrow. His name is Dr. Agulnik. He was recommended by the head of oncology at Northwestern Hospital. He is a specialist in head and neck cancers.

4. Dr Agulnik will confer with two ocular (eye) surgeons. Their names are Dr. Jerry Harris (Milwaukee) and Dr. Tsee (Florida). According to Dr. Syamanski, these two people have the most extensive experience with adeno-carcinoma in the lacrimal gland in the country.

We don’t know yet how extensive this cancer is. We will have more information tomorrow (12/21), after my first appointment with the oncologist.

What you can do:

1. Marines: I don’t want to talk about this. It kind of defeats the purpose of the email. You are only allowed to feel sorry for me if that makes you buy me drinks at the bar (especially GySgt Peterson).

2. All in all, I feel very fortunate to be in my current situation. I couldn’t ask for a better situation if this was going to happen. I am VERY confident in the level of care I am receiving. All four of the doctors involved are experts in their field, and I am at the best hospital I have ever been to. I am close to my family, and I have a good support system from my friends. If this had to happen, I couldn’t pick it any better. I’ll keep you guys updated via this channel as I get information.