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.
Please hang in there and try to navigate the high seas!
That’s a fucking thought station xxx
Tough station even xx
Linnea, You know the cause, it sucks and far worse. Your strength is extraordinary, focus on that and all the love being sent you.❤️✊🏼
Thinking about you, sending a big hug, love and positive thoughts.
I’m all in Linnea!! Meaning, nothing but support for what you need!😘
Amen. Holding you in my heart, Linnea
Wow Linnea, what a widow into mental health this is. So easily dismissed while in a healthy state. One almost needs to plan ahead, to be tied to the mast, not to be lured by the Sirens. Remember how much you truly love life. xo, Wendy
On Wed, Jun 17, 2020 at 5:59 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: ” 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 Wednesda” >
You amaze me yet again, sister…I wonder sometimes if you edit your thoughts before posting—they are so raw and vulnerable in their final version. I can only imagine the darkness—I think many of us are flirting with it these days. Knowing it is chemically induced helps. Thank you for sharing, thank you for helping so many of us through these clinicals, and please know we are all, ALL pulling for you. ❤️
Thinking of you. The light at the end of the tunnel will get brighter and brighter.
Thank you. Idk what else to say. I’ll keep searching for the clarity to separate my pre-existing depression and my current and overwhelming guilt. Please keep writing. 💗