Day 9, Cycle 3: Fear

Scarfing for warmth
Scarfing for warmth

This weekend was the dive point in the wellness curve, the start of the most uncomfortable part of a full chemotherapy infusion cycle. I was tired and wanted to sleep but during those days everything itches, twitches, or aches. I’ve lost so much hair that my head is cold, so now I wear scarves and turbans most of the time, and I get chills. I was lying in bed telling myself that I couldn’t wait for this to be over, that I was almost at the halfway point (partway through the third of six infusion cycles).

And gradually, I started realizing that this might not be true anymore: I think I’m becoming afraid of being done with the chemo.

Early on it was easy to make choices and take action: by and large it all led down one logical path. Seek insurance coverage, discuss options with the medical team, take the orientation classes, stock up on supplies, be the best patient I can be. No point in moping or fretting when the path is clear and you are doing something, sure that it’s the correct choice; it’s easy to look brave.

But after chemotherapy things become murky and scary again. New choices to make: genetic testing, surgery, radiation therapy. Conservative surgery, mastectomy, double mastectomy.

Money. Money. Money.

I’m not afraid of dying, but I am afraid of pain, prolonged illness, and being miserable.

I am afraid of being destitute, of the crushing burden of trying to survive the American (lack of) health coverage system.

I am afraid of losing my breasts — I know it’s oversharing, but I love my breasts and I love sex.

I’m afraid of making the wrong choice and just stretching the ordeal. Excessive surgery? Insufficient surgery?

I’m afraid of the morass of bureaucracy, the paperwork, the forms. I can’t convey how terrified I am of forms.

I’m afraid of having to carry the load of income earning and finance management during this time.

I’m afraid that Edmund’s health is deteriorating too — he already suffers from chronic depression and diabetes. I’m afraid of having to care for him even as I have trouble caring for myself.

I’m afraid I’m delaying on actions I should take right now about these fears because I’m too tired and anxious and fear is feeding on itself.

And I’m afraid of using this fear to get comfortable with self-pity, to avoid making decisions and taking action. I need to push away from it.

This post brought to you by Siouxsie and the Banshees.

 

 

Fiasco: Nextwave comes crashing down!

Nextwave_issue_11Tonight we played the second act of a Fiasco (Bully Pulpit Games) episode using the Heroes of Pinnacle City playset written by Ryan Consell, Josh Hoey, Anna Kreider, and Kit Kreider, to simulate Nextwave: Agents of H.A.T.E.

We had as much fun as we had in the first act; let’s just say that the portal which the Bloodstone family had been supposed to guard re-opened in Daeseong-dong, bringing hordes of doppelgangers of The Captain, and Pulgasari himself! Despite Nextwave nearly starting World War III, and Monica very publicly insulting the Avengers, Aaron Stacks managed to end up on top as the Avengers’ new leader…

pulgasari

“Far Beyond the Stars” yet so close

'Far_Beyond_the_Stars'_sketchLast night we watched the classic Star Trek: Deep Space 9 episode “Far Beyond the Stars” (Season 6, Episode 13, originally aired February 11, 1998.) I had never seen it before; I had entirely missed the last two seasons of DS9 and was spotty on seasons 2-5 until our current re-watch.

The episode has aged very well; nearly two decades later, it is very, very current. The premise (not a spoiler) is that Captain Benjamin Sisko has a full sensory vision of himself as an under-appreciated science fiction magazine writer in 1950s America. The cast regulars play alternate characters in this vision, all without alien prosthetic make-up.

The episode is a success that can be appreciated on multiple levels: the illustration of hope and despair, of prejudice overt and insidious, of how far we’ve come and how much further we have to go; the geeky enjoyment of the portrayals of characters based on real science fiction writers; the actors playing alternate parts with interesting symbolism in harmony or contrast with their regular parts; the musings about the relationship between ideas and change.

The story ties in painfully well with such current topics as the need to even state that Black Lives Matter, and various Sad/Rabid Puppies droppings. For my money, actor Avery Brooks, who also directs the episode, chewed the scenery too much in the climax scene; however, it remains a very strong piece.

You don’t need to be familiar with the metaplot of the show to appreciate this episode on its own; see it on Hulu, Netflix, or Amazon. Read more about the episode here and here (spoiler alert.)

Day 15, Cycle 2: Not Too Bad!

cancer_crab_arabic_drawingMy second cycle of chemotherapy has been unfolding more gently than the first one. Things that really helped included getting white blood cell booster shots on Days 2 to 4 instead of later in the cycle, and improved food and protein intake. As a result, I didn’t become as weak as the first time and I didn’t dehydrate.

That has left me with the time and energy to take inventory and appreciate the good things:

The people in my life. My husband, family, and loved ones are so amazing. Oh, my friends near and far! You are so amazing. You may not know what a difference you make, so I’m telling you. All your wishes, kind words, visits, books, prepared meals, scarves, help, advice, it all buoys me through this.

2016-04-15 13.31.31
Nun of the Church of the Flying Spaghetti Monster

Scarves and hats. I have received so many lovely scarves and hats from friends that I can accessorize with any colour combination, and wear something different every time. Some are stately and luscious fabrics, some are silky wraps, some are whimsical. I’ve received funny ones (like the Flying Spaghetti Monster cap) and geeky ones (like the D20 scarf), jewel tones and pastels, cotton and satin. Which is coming in really handy now that my hair is getting disgustingly patchy.  😦

Coffee. This time I felt better so I was able to keep on drinking my morning coffee throughout the low part of the cycle! You wouldn’t think that makes such a difference, but it does. Not wanting coffee is a sure sign of doom for me.

Dr. Valentine
Dr. Valentine

Felinotherapy. My cats are great providers. I’m attended by Dr. Valentine, Head Oncology Felinotherapist, supported by Dr. Ubaid and Dr. Phantom.

Kaiser Permanente. While I detest the American mockery of a health care system, and HMOs in particular are highly suspect, I have found the local Kaiser Permanente team to be great. It’s well integrated so that I don’t get bounced around between specialties, response is very quick, and the vast majority of people I have encountered seemed very competent and were courteous and helpful. And speaking of KP, their class on nutrition for cancer patients was very helpful in getting me to stay hydrated and eat more protein this time around.

Smartphones. It’s so amazingly useful to have an iPhone, every sick or disabled person should be given one for free. It’s an amazing assistive technology, at hand for everything from keeping in constant contact with one’s support network, to booking medical appointments, to looking up vital information, to storing details of your prescriptions.

Bitching. Yeah, you wouldn’t think that’s a good thing, right? But it is! This time around I was just well enough at the lowest point to bitch about all my little booboos, aches, sores, hair loss, etc. The first time around I was too weak even for that, all I could do was feel miserable. So bitching was progress!

And speaking of bitching…

Troll controls. Spam filters, the “Block” and “Hide post” features, comment screening, and all these wonderful tools on WordPress, Facebook, Google+, and Gmail. Oh yeah, trolls, you’re really so very interesting. Pfftt.

Core Memory

Inside-Out-Core-MemoriesA few nights ago I finally had a chance to watch Pixar’s movie Inside Out. (Pico-review: I loved it.) One concept it uses (not a spoiler) is that some of our memories are “core memories” that anchor our personality, things that become central to the person we are; they are not immutable but they are very strong.

I assume we can all think of a few moments that stay with us through life, to which we turn back repeatedly either to recapture them or with the burning wish to redeem them. I can think of several, but there is one in particular that for four decades has been central to me. It’s the one that I think reflects the best that is in me, that represents the person I want to be, I try daily to choose to be. (So yeah, it’s a core memory that makes me look good, but rest assured that I have some that are not as proud. Another day’s tale.) Continue reading “Core Memory”