It has finally happened. After years of treatments and MRIs. After two separate sessions, each lasting ten painful days, of the blood washing treatment called plasmapheresis. After the last ditch effort of six months of chemotherapy, I am left with the last MRI showing what the results of all this are. Will the chronic inflammation and lesions that have plagued me and brought a dramatic worsening of my condition for almost two years start to calm down? The neurologist said that chemotherapy should always affect an MS process by improving this kind of lesion presentation. We got the results this week and after all this treatment, they are a little better, but ultimately inconclusive. There appears to be some lessening of inflammation, but many active lesions still appear.
My very perplexed and concerned neurologist has consulted with neurosurgeons and neuro-oncologists in a charmingly-named group called The Tumor Panel. I am the most complicated case in the University of Washington MS Clinic, and my neurologist has put my case out on the wires to neurologists all over the world for consultation. The neuro-oncologist is recommending a biopsy of my brain–the tissue down deep inside–to see whether this presentation is a rare form of brain cancer instead of multiple sclerosis behaving strangely and badly. We met with the neurologist to discuss the options.One is to go back to the powerful drug Tysabti, which I took for eight years back in Washington DC. During that time, I had no new lesions, but it’s unclear how taking the drug for that long a period could affect someone. This drug has the possible side effect of causing a dangerous infection called PML–progressive multifocal leukoencephalopathy.
It eats your brain. This infection is deadly in one in five people who contract it. It does irreversible damage. Data on people like me who had been on the drug for a long time and then returned to it shows that these steps result in a one in 100 chance of contracting PML.
As I said to the disease in my speech at the wonderful MS Society award dinner several years ago, “You wicked disease. Do you not realize that we have thousands of angels arrayed against you? Do you not understand the fact that if you strike one of us down, 10,000 will rise to take their place?“
All those supporters who gathered that night–my law partners who flew out from Washington DC, my beautiful extended family and many friends, including those from the MS Society and others who are in contact with me almost every day–they were all there to be present for this moment. I am so fortunate to have such support and I’m so ready to take this next step.
It will take six months to see whether this drug which worked so well a long while ago will help to reduce the inflammation and show that the lesions are due to MS, thus avoiding for now the need to undergo a deep brain biopsy. I will start this monthly infusion soon, with constant monitoring for signs of PML.
It is time for courage. I have decided that since multiple sclerosis has decided to mess with me so much, I am going to rename it from MS to MF. This change is inspired by the powerful movie Gleason in which a star college football player played for the New Orleans Saints and famously blocked a punt that help the Saints win the Super Bowl. He made a documentary about his descent into ALS so that his son could come to know him after his likely death. Like mine, his wife was an incredibly strong presence, and at one point in the movie, says about the disease “This is a motherfucker.”
So MF, let’s dance.