cancer is not a “journey”

(first of all: treatment update.
Having chemo every 4th week, for 2 half and 2 whole days. Managing side effects okay. Last two scans showed NO CHANGE (yay!), next scan in about 6 weeks.)
*****
For a long time--a year and half? Two years? more?--before being diagnosed with cancer, in addition to some seemingly-random physical symptoms, I had a lot of struggles that were unexplained. Low mood. Listlessness.  A profound lack of motivation. Random fatigue-I'd involuntarily 'nap' on my couch many evenings after work ended.  I thought there could only be one reason for all of these new symptoms: Depression.

Of course, now I know this was a result of the adrenal tumor in my abdomen.
Note: most (95%) adrenal tumors are benign, not cancer-but they can still cause these symptoms, as they produce hormones.

But I didn't know then.

I have had PTSD, Generalized Anxiety, and a Panic Disorder since I was four years old, although they were not diagnosed until I was 25 years old. I just thought I was  too sensitive/overemotional/overreactive--much like thinking I was depressed these past years until the tumor was found. 

I've always described myself as a 'loyal anxiety girlie'. I never had symptoms of depression.  In fact, when I was anxious, not only did my motivation not drop, I was actually MORE likely to get things done; it was a way of managing my anxiety. I would make lists, and cross things off of them with a vengeance. I'd start or finish a project, clean the house, make more lists.

But for the most part, during these past few years, I'd sit on the couch, thinking: I want to clean out that closet. I want to write. I want to go take a walk. I want to create a workshop offering. I want to get up and do the dishes.

And yet I'd just sit, scrolling through my streaming services to find some  mindless show to binge.

Okay-so we figured out it was a tumor the size of a CANTALOUPE, and no spread was suspected. I had a six hour open abdominal surgery to remove the f*cker, my adrenal gland, and my kidney.  And before I'd recovered from the surgery I was re-hospitalized (hyponatremia) and the scan from the ER showed progression, later described by my oncologist as "explosive" progression.

(which so far has been completely halted by chemo. I'm aiming for shrinkage.)

And shortly thereafter, I had a port implanted and started chemotherapy.
At first I had chemo every 3rd week.  Four days--well, two half days, two full days.  And it wasn't too bad; I had side effects for a few days after a treatment, then I bounced back.  I thought: I can do this. No problem. Four days of chemo, and two weeks of regular life.

And then, the side effects started to become cumulative.

The fatigue comes and goes as it pleases. The medical team all say that movement is the treatment for fatigue-but how do you 'move' when you keep passing out on the couch unintentionally? Some days I feel like there is a big, wet, wool blanket on me that I must somehow carry around as I do life; socializing, errands, housework.
Other days I feel great; I run around after the 3yo nephew, giving in to his every "come chase me!" and "let's do THIS!", and the next day I feel like I can't move.

My body is no longer my own. My energy fluctuations make it unrecognizable to me.  I used to know what my limits were, how activity would affect my energy level. No more.  And when the fatigue feels like showing up, I could be in the middle of anything-food shopping, a visit with a friend, a walk, doing the dishes.

The brain fog is the second worst (maybe a tie for first?).  I had some brain fog going through menopause, and the tumor (I have a new one-it's smaller, but was part of the 'explosive progression').  Chemo causes brain fog, as does the oral medication I'm on. That's QUADRUPLE brain fog. Between that and the fatigue, it's a miracle I can get anything done.

Example:
I have a short-term disability policy that I pay for.  I made a claim for after my surgery, as I was unable to work for about 6 weeks (and intended, until the Stage IV shit, to get better and go back to work). I made a claim, did everything they asked, and--of course--it was denied.  They suddenly needed more detailed information on what I was/was not able to do in those 6 weeks. Which is fine, except information is not requested as part of the claim.
(A post on the evils of for-profit healthcare at a later time.)

Suffice it to say it's intentionally cumbersome and confusing-I know this, because as a social worker, I have helped hundreds of clients navigate these processes.
I call the company, get clarification on how to appeal the now-denied claim, and print out the forms. That is, I tried to print out the forms. The paper kept getting jammed. It took me a few tries to get the form printed out.

By the time I got the appeal form to print, I'm completely out of energy and any capacity to do anything else. Anyone who knows me in real life, especially who has worked with me as a social worker, has seen my Energizer-Bunny-like pace, multitasking, checking things off my list left and right.

I'm not that person anymore.

One task can take me days or weeks to initiate, and longer to get done.

I don't recognize myself.

And I didn't choose this, it happened to me  and yeah, I make choices along the way-should I have the surgery? Is it worth the risk? Should I have chemo? How often? How do I manage the doses, and the side effects? How often should I have it? Should I take the oral medication, knowing that it is so toxic for the body but quite effective in slowing/stopping the growth of my very rare type of cancer?

Yeah, there are choices to make.

But for me, it's not a "journey".

Journey is a word that romanticizes cancer, that makes people (including the patient) feel better. It sounds good, soothing. It conjures images of a warrior in the forest, searching for God-knows-what. Or of Dorothy on the Yellow Brick Road, desperate to get home and picking up whimsical friends along the way, helping them find what THEY need.

That's not my experience of cancer. 

And sugar-coating makes me kinda sick.

I think I'm going to experiment with some other terms. 

I googled synonyms, and one that caught my eye was 'rocky road'--except that made me think of ice cream.

So how about today just using: "F***CCCKKKK".
At a high volume.
That resonates.

[image: person pushing a large boulder up a mountain, a la Sisyphus]