It’s official: I’m dying.
Ok, ok, that’s true of all of us and it was true of me as much last week as it is today. It’s as true of you today as it was true of you yesterday. But once again we were reminded of the reality* of our situation, of the nearness to death that I am living, and of the seriousness of my illness. Being completely honest, those are not all things that i really need to be ‘reminded’ of because my body is constantly reminding me of those truths. It’s for this reason that six weeks ago the good results we received back were so disconcerting: they did not match what my body was telling me. This weeks results were quite the opposite.
Only hours before literally one of the best birthday parties I’ve ever had thrown for me the results came in showing that my original tumor (the one that shrunk by one centimeter last time) has stayed the same. This is good news. The bad news is that two new tumors have emerged inside my spinal cord. The smaller of the two is 1cm across and is in the base of my neck. The larger is a 1.5 cm tumor located in my middle to lower back (right where my bladder function is controlled ironically). Additionally the ‘sheath-like tumor‘ that surrounds my spinal cord has begun to thicken or constrict down near the base of my spine. It was great to be able to celebrate with the people I love and forget for a short period of time the reality that lay under the skin. Some of you drug the news out of me but for the most part Jess and I chose to enjoy the scenery and the company.
What does this mean?
It means that I’ve still got a nasty type of cancer that prefers to continually grow and spread itself in invasive ways. That’s the nature of a GBM. That’s just what they do. It means that my current method of treatment is not effective and we have the choice to start something new or to essentially give up on traditional medical treatment. It means that I met with my naturopath yesterday to talk about my oncologists suggestion of a new chemo. And, finally, it means that today we’re going in to initiate my new once-a-month chemotherapy treatment. For clarity sake here is what things look like: every two weeks I will continue taking the Avastin anti-body drug that I’ve been on. Once a month I will start a new chemo that will be potentially more invasive than some of the drugs I’ve done before. And simultaneously through it all I will be taking a specific regimen of herbs and supplements tailored to the medical treatment I’m receiving (something we’ve done since day one). The probability is that I’ll finally lose my hair, I’ve probably got a season ahead of me where I’m ever more tired than I’ve been lately, and I might be dealing with some more extended nausea fun.
Telling the Kids
The kids were looking forward (maybe ‘looking forward’ isn’t the best way to capture it!) to these results. After getting the ‘good news’ last time India was so ecstatic that daddy’s tumor was smaller that she quickly opened her worry box and let all of her worries float away “up up up into the sky like balloons so that they’ll never come back”. Jones quickly balanced that hopefulness with “Even with the good news, my worries aren’t floating away. They’re made of steel and they are not ever going to leave.” So we were worried about her gentle little spirit, worried that she’d be crushed. In the end, as we expected, it was the thought of daddy losing his hair that was most worrisome. And so both kids came up with backup plans for daddy. We’ll have a stash of wigs, of green eyebrows, some watercolor pencils to draw on angry eye brows, happy eyebrows, etc. If or when it comes to it they gett to have the fun and pleasure of cutting daddy’s hair at our friends salon–something that seriously piqued their interest.
In the end I’m not sure quite where I’m at nor how I feel. I’m certain that whatever it is or wherever I am at I’m not ready to share it here. I am feeling fine–which is usually not a very connected or healthy place for me personally to be (I can be eternally fine and live in this fine place for a inFINEtely long time to the detriment of myself and others!) I do know that in many ways nothing has changed. These results have validated many of my new symptoms, they have corroborated what my body has been telling me for two months which in a strange way is quite comforting. So in that respect, from that perspective, nothing has changed. And while nothing has changed…we are still desperately looking for, praying for, and hoping for a miracle. It couldn’t come sooner if you ask me. But, again, our faith is in God not in his willingness or ability to heal me.
Here’s my final though about all of this. In the end Jessica and I are realizing more and more that all we’ve ever been given is today. It’s cheesy to say. It is so incredibly painful to practice in real life. And it definitely has the potential to be one of the most trite things an individual who is not connected to a person’s story can say to someone suffering or grieving–but in this life today truly is all that we have been given. Nothing more, nothing less. I want more. I need more. I have not been promised more…not in this life.
Thank you Jesus for hope in the resurrection.
* Our choice is to live in reality as it is while simultaneously hoping and pleading with God for an alternative reality to enter into our story.