Facing the Inevitable

I knew this day would come but it was still a shock. I've been living with glioblastoma for well over four years and I knew I was on borrowed time. I've been involved in numerous clinical trials and have gotten superb care in Boston with attentive, professional, caring, and kind physicians. I've had the extraordinary support of my wife and son, my friends, and extended family. In between treatments and MRIs I was trying to live life as fully as possible, working on my boat,  helping my wife plan ahead, spending time with friends, doing some travel, working for a Vermont maple syrup business – a fun part-time gig since my retirement from software engineering five years ago.

I’ve lived a free person in New Hampshire. I want the freedom to die as well.

But last week the inevitable came. I learned that the tumor is growing and I am out of options. I'd finished two months of yet another chemo round that left me feeling very ill and depleted and I could not face another. In fact there is no other one to face.

My son Connor has joked with me that for four years I’ve been saying this or that could be the last time – but now, it’s starkly real. My oncologist wouldn’t give me a number – the physicians seem to really hate to do that. But my educated guess is I’ve got at best months.

Of course I hope I’m on the long end of that scale – and hopefully longer. I’ve been an outlier this entire time – I’ve lived far longer than most people with glioblastoma ever do. I hope to see Connor graduate from grad school this spring and to sail again. Sailing is one of the things that gives me greatest joy.

But the feeling of “last time” is ever present. Like skiing at Gunstock last weekend and then staying overnight with my wife Bonnie’s parents, whom I adore.

As the shock of the finality of all this is beginning to wear off a little, I’m focusing on doing key things that I need to now, before I’m unable. I’m writing letters to certain friends. I’m continuing to help in every way I can so Bonnie is prepared for life without me – the nuts and bolts stuff, like our household budget, and taxes.  And then I find myself wondering how many death certificates she will need, and what does a funeral home do, anyway? I just learned that in our state you don’t even need a funeral home. If your family wants, they can take your body to the crematorium. My wish is to be cremated and have my ashes in several places, including the ocean, and some to be kept for Bonnie, so after she dies our ashes twill be together. 

My wish is also to get medical aid in dying in our state, so people like me have that option. I am quite sure this will not come soon enough for me. I’m inquiring in Vermont, which appears on the verge of dropping its residency requirement, which would mean you don’t have to be a Vermont resident to qualify for medical aid in dying.  But you do need to be treated by a physician there.  I’m looking for someone who will work with me.

My oncologist has described what I can expect now. It’s growing weakness, decline in my ability to think, maybe losing my ability to swallow, to walk, to read, to speak. Incontinence. Seizures. I don’t want this for myself, and even more I don’t want my wife and son and closest friends and family members to have to suffer with me. I believe we ought to have this basic right to control, as best we can, our final days. I want the choice of when, how, and who will be with me when I die.  I’ve lived a free person in New Hampshire. I want the freedom to die as well.

Frank Liva lives in Portsmouth, New Hampshire.