Freight train, freight train run so fast

Last Christmas, we sat around the kitchen table after unwrapping gifts, and lazily enjoyed breakfast while listening to Craig play his guitar and harmonica. Jill made a request for "that one song". Craig began playing "Freight Train" and in an instant Mom sang along. Pretty soon we were all singing a song some of us had heard before and others were hearing for the first time. That song will always represent that one morning when we were together, singing. And, still, it is a theme for the progress and pace of our reality.

Each day presents a new way of reminding us what we are dealing with, and each day we manage to sustain a new level of determination, care, and consistency when so much around us isn't so. It's a tumultuous river to navigate but somehow we stay afloat.

Today, Jill, Dad and Mom went in for the reading of the recent MRI. Like Craig's MRI readings, these are both dreaded and anticipated moments. While we want to get it over with, we don't. Her recent, worsening symptoms hinted as to what we'd find, and it promised not be to in our liking. More and more, she's had difficulty using the left leg, keeping upright without falling, keeping normal cadence in speech and gait, and just yesterday Jill noted that she gripped onto her walker without any real intent to use it. Jill coached her to let go, and Mom would eventually join in telling herself, "let go of your hand, Mary". Weathering nearly 10 months of her GBM tumor, and sitting front and center with its cues of progression, has made us quite the gifted armchair oncologist. Several times now we've dissected her symptoms and concluded that the tumor is on the move, and several times we've been accurate. Today was no exception.

Like a freight train, her tumor has roared ahead claiming more than half of her original tumor bed in the right frontal lobe. To put it in perspective, back in early April during the time of sepsis, her MRI report showed what was originally deemed a "non-enhancing flair", which may or may not have been tumor. They revised this to say it was definitely tumor, albeit a wee sliver of a thing. Now, there's no question whether it's back or not.  It is, and so began the scramble to find alternative treatment options.

As per usual, no search would be complete without first hearing inspiring words from the very helpful and always informative oncologist. Jill relayed that he said, "yeah I think it's the tumor and not the whatchamacallit". Yes, yes whatchamacallit--that's a common search term in Medline. Brilliant. It gets better. He made the astute observation that Mom had really gone downhill since the last time he saw her. Might be true, but it would be worthwhile to ask him when he remembered seeing her last since, quite frankly, he doesn't seem to remember much of anything (certainly not the fact that Craig is also sick when I personally told him twice). It is true that she's had a hard time of late. To tell someone that point blank might not be the best choice when said downhill turn isn't related to a simple head cold but to something that is taking her life little by little. Not something to talk about so casually and callously, nor is saying that she should get to Denver as soon as possible because "it's only going to get worse". Really doctor? Tell us more. Seems like a bake sale and things are going fast, fast, fast.

The 'beaut' of it all is that rather than saying "this is disappointing, but let's look at other treatment options" (since Mom has articulated she's not willing to throw in the towel on her life), he told Jill basically that the family is to go on the hunt for clinical trials. He recommended Gamma Knife surgery...again...and...again...we'll have to tell him that that procedure is not indicated for her cancer. In fact, leaders from NCI and Duke explicitly say that it only causes necrosis, which will cloud future MRIs, and will cause extreme edema--plus, oh by the way, the tumor will come back with a vengeance.

So, Jill called me at 9:45 or so and by 10ish we were hitting the pavement, contacting our various resources in Bethesda, Ohio, California, New York, Texas, you name it. One contact mentioned a specific drug and it was corroborated by the Duke oncologist once I spoke with him late afternoon. He verified with me that Mom wasn't depressed in terms of dignity, self-respect, etc and wanted to pursue treatment options. Then he mentioned a possible plan and will confirm it once he sees the slides that Dad and Jill sent today. Jill also got in touch with immunotherapy clinical trials out of California. It's interesting--tears may fall but they fall while strategizing and networking. We recognize that time is of the essence for Mom and by close of business today, we had a viable plan for her. Now that's a different type of freight train! The new plan won't save her or cure her, but it just might slow growth or even reduce tumor size, and give her more time. When time is discussed now in months, weeks, even days, we'll turn over any stone to give her just that. Still, it's extremely hard to write and even more impossible to comprehend that we might be that much closer to this mysterious 'inevitable' lurking in the shadows.

As such, where there was planning, there was grieving. Craig came out the family room and sat down after I spoke with Jill. Times before, we had asked him just how much he wanted to know of Mom's condition and we'd ask Mom the same question about his condition. He said he wanted to know everything. When I told him the news, as Lawlers do, he stared ahead intently as he weighed the news, fought the tears as best he could, and let them slowly well in his eyes until they finally fell. I sat on the floor next to him and put my hand on his knee as we cried together. He said it was hard news to hear. And, then he wondered what it will be like when we are all together this weekend yet seemed more determined than ever to reunite.

And, there again, the freight train traveling on a parallel track. We have two aggressive, unique forms of cancer roaring ahead, and a feisty, stubborn, fearless family willing to lie on the tracks to stop it. Just wish that would actually stop these trains from 'running so fast'.