Disclosures in Here Be Dust

(As a cancer blog mentor for a free online course being developed by Rebecca Hogue, I wrote the following in response to her question about what we are and are not willing to blog about and why.)

”While I viewed these mountains [the Rockies] I felt a secret pleasure in finding myself so near the head of the heretofore conceived boundless Missouri; but when I reflected on the difficulties which this snowey barrier would most probably throw in my way to the Pacific, and the sufferings and hardships of myself and party in them, it in some way counterballanced the joy I had felt in the first few moments in which I gazed on them; but as I have always held it a crime to anticipate evils I will believe it a good comfortable road untill I am compelled to beleive differently.” – Meriwether Lewis, May 26, 1805. From the Journals of Lewis and Clark.

I have been asked, “What type of information [are you] willing to share on your blog, and what information you do not share on your blog and why?”

I view my entries here as parts of a travelogue. I’ve been on a trip no one wants to take, but it is a trip on which we travelers are sent against our wills. In answer to the question, “What do you call your diagnosis, treatment, and all experiences that make up your experience with cancer?” posted on WhatNext, I wrote that I call my cancer experience a “perilous adventure.” I push on through hardship and into unknown territory, and I report back on what I find.

I learn and benefit from my co-travelers; that said, we each face different landscapes. I have faced mine mainly with fascination and dogged determination. Those work together to combat my fear, which surfaces every now and again but does not hang around for long.

The Lewis and Clark expedition had also been a scientific expedition, filled with notes on flora and fauna new to the explorers. Likewise, I treat my cancer experience as a series of scientific observations with an N of one. In addition to fighting cancer, my mission has been to understand as much as I can and to share that understanding. The graphs below formed part of my weekly side effects report to my medical team after my four Adriamycin/Cytoxan infusions and before I began 12 cycles of Taxol. They also appeared in this blog entry.

My nature is to be engaged but also somewhat detached – a good coping mechanism for me – so I don’t report much in the way of emotions unless they seem relevant to my experience. As I wrote in this entry, I have not felt depressed (to my surprise), but a few occasions have brought tears to my eyes, including tears of awe rather than sadness.

On Friday I experienced the odd sensation of coexisting in two worlds. I am at that point post-treatment where my energies are up, my hair is largely back (I wore my chemo cap outside only because of the chill), and my nine months of cancer treatment seem like some sort of bizarre dream from which I may have finally awakened. It doesn’t seem quite real.

Then I was answering another WhatNext post that asked people what they had experienced during chemo infusions, from someone about to begin Adriamycin/Cytoxan. I referred the questioner to this entry, where I had described my own process in detail. As I reviewed that information, I was suddenly back there. Sights, sounds, bodily sensations. Visceral memory.

Not a dream – but another world that I had lived in and slogged through for a time.

I document in photos as well as in words, and there I use some discretion. Photos that are explicit, either NSFW or not for the squeamish or both (e.g., scars and burns), appear only as links as in this entry. More neutral shots appear in the entry itself, as they do here. That latter entry also references some of the readings I’ve done. Since my drive is to observe and report, part of what I learn includes providing citations for my info.

I also share my art in my entries because it has served and continues to serve as a meditation and coping mechanism for me. A meditation doodle countdown marked my final ten (out of 16) chemo infusions. This entry presents my number 8 countdown doodle, along with graphs illustrating Taxol’s effects on my blood work. The entry also includes various citations and a discussion of semantics around the word “cure.” Every so often I do a bit of editorializing.

One area of my life that I do not blog freely about here relates to my caregiving. I’ve been caregiver to my partner since 2001 and some days are hairier than others. For me, being a caregiver is much, much harder than being a cancer patient – and being a caregiver while also being a cancer patient comes with its own challenges. I give a taste of that experience here and here. I know that my voice on the matter is authentic to me, but I refrain from giving more details publicly because it is a shared story that my partner and I can tell very differently.

The nature of this blog has changed from treatment to post-treatment, so I suspect it will contain more in the way of introspection, editorializing, and reactions to what I encounter in a landscape that is not quite so harrowing. All the same, it is not the land I once knew.