CSTAR

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.

BINGO!

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.

Surgery went well. I threatened the lives of the recovery staff (again), promising to end all of their lives immediately if they didn’t let me go. I don’t know what to say, you wake up in pain, immobilized, and disoriented, and it has its effect on you. Needless to say, they didn’t undo my restraints anytime soon; much to my chagrin.

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?

I must apologize for not keeping up with my writing. Things have been happening, and the more behind I have gotten, the more formidable the task of catching up became. Bottom Line: A Lot Has Happened.

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.