Tag Archives: depression and lung cancer

In every crisis there is opportunity

Without a doubt part of what gets me through is a solid belief that nothing is wasted. Even the shittiest of circumstances can be the basis for good compost and thence a thriving garden.

After a four week break I had yet another infusion last Wednesday. Happily, it took a week for the mucositis to rear its ugly head and thus far it is manageable.

The day after infusion I felt a distinct lack of motivation. However it would take another several days for depression to kick in.

To return to the metaphor of agriculture, this is no garden variety depression. Rather, it is something I can only describe as despair.

So very unfamiliar to me, who has cycled quickly in and out of depression my entire life. This is something different–something heavy that sits upon the center of my chest and refuses to budge. Without raising red flags (I’ve got this) it is the sort of boundless sadness that includes suicidal ideation.

Yes, that bad. And yet—I understand implicitly that this is chemical. Previously I wondered how much had to do with being uncomfortable–the mouth sores–but this time it is clearly independent.

For whatever reason this drug fucks with my head–big time. It is difficult to collaborate when you are the only person reporting such a side effect and unlike lorlatinib, this is not a small molecule designed to cross the blood brain barrier.

No matter. My empirical evidence rests on my own account–the very reason humans are used in phase I trials. Although this molecule may be having some modest benefit against my cancer, the cost to my psyche is untenable.

Surviving is a tricky business. The first requirement is consent–another way of saying a strong desire to live. This drug diminishes that instinct in me–to a notable degree. Had I not so much self control and the ability to step back and be unemotional, I would say to a dangerous degree.

As someone who has (and continues to) dally with recreational drugs I understand that this is chemical and therefore not without end. When I take an edible (THC) and get too high, I know that within perhaps a five hour window, I will come back down. This is going to take longer—possibly weeks. However, I am reassured that although it is me feeling this way (despair) it is not without provocation. There is a light at the end of the tunnel–my will to survive and its attendant joie de vivre will return. I just have to hang on.

I have the ability to remove myself from certain situations–not take it so personally. This sucks but it is also the fodder for great learning. As a cup half full individual I don’t believe I have ever fully appreciated the challenges of mental illness and depression. I now understand that mental health is even more fundamental than physical health. I am currently not suffering physically but my mental state is precarious. That is instructional and humbling both.

In two weeks I will have to decide if it is worth having yet another infusion. Today I would say no. Adamantly. As important as my lungs are, it is my brain and my mental state that actually commands this ship. And these high seas are not to my liking.

Getting some things in order

Looking back, I see that I began my previous post with the words, “First, the good news”.  What I didn’t get around to saying was that I’d been struggling again with an old demon of mine, depression.

The day after my return from Colorado, David off for work and Peter at a friend’s house, I was resting on the couch, quite alone with my thoughts (sometimes a treacherous place to be). Without warning, a tidal wave of grief just rolled over me; literally taking my breath away. Suddenly I was sobbing and gasping for air, absolutely panicked.

Fortunately, I had the good sense to call my daughter Jemesii, who assumes an incredibly calm and capable demeanor in times of crisis. She talked me off the wall. As luck would have it, two of my closest friends chose that particular day to also check in and I managed to pulled myself together.

However, one thing was clear. I was feeling completely overwhelmed.

While in Boston on Monday, I ran into my favorite thoracic social worker. We had a brief chat about both the wonder and the very real strain that accompany extended survival with a terminal illness. It is increasingly difficult, I explained, to maintain a constant state of gratitude, when in fact the very things I am grateful for are taken for granted on a daily basis by healthy folk. And how those of us with advanced cancer have necessarily adapted our expectations (as have our families). Unable to rid our bodies of disease, we live with it; an uneasy cohabitation at best.

During my recent convalescence, David and I had some meaningful conversations about practical steps that could be taken to help me feel more in control again. Twice a month, someone will come to clean. David and I will begin marriage counseling with a therapist who is schooled in cancer related issues. Although not our first go around, we could really use a refresher. And, we are looking into boarding school for Peter’s junior and senior years of high school.

As strong as my resolve to continue surviving may be, the hard truth is it may not be doable. And, should my health deteriorate, it will be very difficult for David (who travels quite a bit for business) and Peter to get by. It would really ease my mind to know that Peter had an established community and a supportive environment to fall back on, particularly in the event of my passing. I feel there is real potential for the right boarding school to provide that.

And as for me? My anxiety has greatly lessened now that some proactive steps have been put in motion. Being able to get back on trial came as a great relief. It wasn’t just my physical self that was out of balance; I’d been long overdue for some major housekeeping in the emotional department as well.