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 sought 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.