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.