Tag Archives: fear

Nov. 22.

How We Forget

My Status: Feeling Good
Mood: Content

Last night I was finishing up some work stuff and trying to figure out what my evening would look like, when I smelled a waxy, unscented, burning candle-like smell coming from downstairs. Denny was downstairs puttering around in the kitchen getting ready for work (he worked graveyard last night). Next thing I know, Elsa (my little blonde pup) is upstairs, plumping both paws on my left leg, giving me the full pick me up treatment and panting hard. I told her no and gently pushed her paws aside. She then ran around to my right leg and repeated her performance. I again told her I wasn’t picking her up and asked what was wrong. Usually, she takes my no and curls up at my feet. Not to be denied, she squeezed past my legs onto the small desk shelf and crawled up my legs into my lap.

She was distraught and shaking, so I cuddled her for a few moments and set her down… she crawled into my lap again after running out to the landing to peer down the stairs. I couldn’t figure out what had her so excited and unnerved that she needed to be held.

Until Denny came up the stairs, rack from the toaster over in hand and said, “You know how you always tell me to put a plate under my food …” and showed me how the plastic plate had melted onto the rack. *sigh* He’s right, I have told him once or twice to make sure he puts a plate under whatever he’s heating up … in the microwave.

Why am I telling this story (other than the fact that it is funny and the house didn’t burn down)? It certainly isn’t to make fun of Denny for making a mistake. Or to point out how on the ball Elsa was in trying to alert me to something be wrong down below. The reason I am sharing this story is it so aptly illustrates how Denny is handling the journey with me through cancer and chemotherapy. As I mentioned before this journey is not mine, and mine alone. My health and well-being affects my family and friends, just as theirs affects me. Truthfully, Denny has been having a tougher time of things than I have. Forgetting things (like my 1st chemo appt.), being more tired, making mistakes he would never otherwise make. Like this one.

It’s not like heating things up in the toaster oven is a foreign activity for him. We use the toaster oven on a daily basis … and I mean we and not me. And yes, I recently had to remind him to put something under the food in the microwave—which he also already knows. So why is he so forgetful? Do I think he’s starting to go into early Alzheimer’s territory?

No. I don’t think dementia is setting in. I truly believe he is suffering from worrying too much about how things are going to go with me, and pushing those feelings down instead of talking about the fears. When you suppress so many feelings, and force yourself to be strong, there are negative side effects. He’s suppressing so much right now, he’s close to suppressing everything, so things that you know and take for granted that you know? Gone. One moment you know you need to take your keys to leave in your car… the next, you’re walking out the door without them. Why are you so forgetful? Because your mind is so occupied with keeping those things from you that you’re afraid to deal with or reveal.

I picture his mind much like the picture above. He will have a clear, almost sunny stretch, where lucid thought is easy, and he has his usual firm grasp on the essentials, but then something will trigger a thought about me, and the clouds come rolling in trying to bury the fears by hiding them in the mist. What are his fears? I can only guess. Fear that I will need more care than he feels capable of. Fear of losing me. Fear of my being in pain. In some ways, it is much easier to be the patient. I’ll deal with the hell when it comes, and I won’t be dealing with it alone. But Denny feels like he is alone in what he has to deal with. How can he possibly burden me with his fears? In some respects, he’s right. At the moment, I’d be able to deal with his fears just fine, but depending on how my journey continues, things may reach a point where I wouldn’t be able to help him deal with his fears. (And I’m hoping that won’t happen, and expect that it won’t—so far anyway.) But he’s not alone. And I hope to help him see that. BEFORE the house burns down. 😀

So how am I? Pretty good. Trying to get the sleep disruption under control. Still. Better night last night, but the night before that was pitiful. I have been taking the time not writing to do a little reading. Something I love and need to make more time for. I almost started writing last night. The characters (Tim and Tom) were willing and I had opened up the WIP (Work In Progress), but then I closed it. After getting better pain-wise, my right hand was hurting quite a bit after the full day’s work. The past few days have been a lot of coding work and I have not been wearing my compression glove because it was causing too much pain after removal. Which means I have to take extra care in not wearing out my hands with typing.

I tried to get a hair appointment for tomorrow to get my hair cut off (yes, I’m going short), but my stylist is getting over a cold, so the shearing will happen on Wednesday. Today is better pain wise, but I will also not work tonight for the same reason. By the end of the work day, my nerves in my hand, wrist, and forearm are tingling. Not only that… the tingles are migrating to the left. With the bloating and water retention and the little white cells running around and giving all the other blood cells the pep talk, it would sincerely be nice if my body would allow me a chance to write a little. I think my characters have settled down, and they are starting to talk to me again. But tonight, I will be good, and read.

Tomorrow—I write.

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Nov. 17.

A Bit of the Hair …

My Status: Feeling Good
Mood: Feeling accomplished – laundry done, beds made—who could ask for more?

For those of you coming along with me on this journey who do not have an understanding of how weird and twisted a writer’s brain can be, this post may sound weird and twisted. I will preface it by stating that for me as a writer, my characters have to live in my head in order to come out on the page as full-fledged people, so my characters talk to me, we have conversations, we argue, and I have, at times, received the full-on silent treatment. What affects me affects my characters, and what affects them affects me.

I haven’t written a lot since finding out I had to have chemo. First because I had to get things taken care of in a short time frame, and second because I’m not getting a lot of cooperation from my gang. I am currently in the process of trying to finish up the 4th book in the Misfit McCabe series, One Way Ticket Home, so I can move on to my next project. This particular book has taken some unexpected twists and turns and I have to tell you, I love what has happened with it. I can’t wait to give everyone a chance to experience it. I knew the girls were all being a bit stand-offish, and we hadn’t had a chance to fully discuss what would be happening with me and what we could all expect—it’s kind of hard to have that conversation when you really don’t know yourself.

I thought maybe working through a scene with the boys was the way to ease into it, but I needed them to fight … and they wouldn’t. They didn’t want to “gross me out” while I was connected to the tubes. Ultimately, I think I will be able to write during the six hour day, if for no other reason than to escape the fact that I am connected to a drip for six hours. But this round it was not to be so.

The boys at least showed up. The girls refused to even come talk to me until after my first treatment. Then Janie came through. Janie is a character from One Way Ticket Home, and I love this character so much, I can’t wait for you to meet her. Here’s how the conversation went.

Me: Hey, Janie.
Janie: *stops dead, eyes widen, hands cover mouth*
Me: What’s wrong?
Janie: You still have hair!

And that’s how I found out Katie had told all the girls I was going to lose my hair. And they were all weirded out by it. I had to tell each one of them that with my particular treatment, hair loss is not common, so it is unlikely that I will lose my hair, but even if I did, it wouldn’t be a big deal for me. I know that hair loss is a big deal for some people (men and women) during the chemotherapy process, and whatever is a big issue for you, is a big issue. I’m the first to say so. I don’t think being upset by hair loss means you’re vain. It is the mourning of loss and the process you have to go through in search of health. Hair loss for me, simply isn’t one of my issues. If it starts coming out, I’ll shave my head, just to be done with it. And then I’m going to have a blast shopping for some outrageous wigs (and if I can swing it, matching eyebrows), and some killer scarves.

KewpieWildIn fact, one of the questions I started debating in the middle of the night (Denny had to start work at 0300, so we had some awake time during the wee hours) was whether I should get my hair trimmed, or cut short. It needs to be cut or I’ll soon be the wild-haired kewpie doll visiting all your nightmares. The hair has reached the bushy, totally out of control stage and has been there for a few weeks driving me crazy. But I didn’t want to have it done until I knew whether I was getting a cut or a cut and having a bit of color put back in. The color will have to wait, so now the big question is trimmed to the shoulders or a really short style. Warning: If you choose really short, you may have to listen to me whine during the growing back out stage.

I understand why the girls were upset by thinking I would lose my hair—for teenage girls (or near teen as in the case of Angela) and in fact, for most people, hair makes a statement about you as a person. They fear being targeted as different outside of their control. I like my hair, I always have, but maybe I feel a bit differently about it because people have wanted to touch it and play with it my entire life. And it annoys me when it gets in my way, so when working I usually have it up and out of the way. I once cut it all off because I realized it was taking me over half an hour on a daily basis just to tame it.

Or maybe hair loss as something not so big sunk in when I took a modeling course at the age of thirteen, and my instructor had recently grown back her hair, and freely discussed not letting the loss of a few strands of hair slow her down. She was gorgeous, and if she wasn’t bothered by it, then why should I worry? And I really do plan to buy wigs, should I lose my hair—hot pink, bright purple, and rainbow … because I can. Because it will be fun. Because it will give me a chance to talk about it. And because if I do lose the hair, it will grow back … and if it doesn’t? *shrugs* I still say not a big deal. I can live a long time without hair.

So the girls are doing a bit better knowing the hair loss thing is not likely, and even though they are not as comfortable with it as I am, they will be okay if it does happen. But they still haven’t been quite ready to work. No one seems to want to upset me at the moment. *rolls eyes* I’m trying to get across to them, life doesn’t stop for this. Life continues on.

My social media circles are a testament to the circle of life. Right now in my stream I have a grandmother happily posting pictures of her brand-new grand-baby, a friend is preparing for youngest son’s wedding in 5 days, another friend is on her way home because her mother passed away this morning. My stream shares triumphs and despair, sickness and health. This cancer thing is only a part of my life, it is not going to be allowed to consume my life until we get rid of it. There is too much life going on, and if I stopped everything, I’d miss it.

Now all I have to do is convince my characters.

The picture at the top of the post is perfect for talking about my characters—a castle growing out of a cliff and reaching toward the clouds. So very much a part of being a writer. And all this discussion of hair makes me think Hair, so have posted the song below:

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Nov. 16.

Day of Rest

My Status: Rested
Mood: Good

Sleep has been accomplished. And not only the drugged variety, which was interrupted by several trips during the night to excrete the extra fluids I’ve been carrying around, but this afternoon I had a honest-to-goodness, natural sleep, nap. Too much information? As I mentioned in my first post: My aim is to share my experiences with you, good, bad, horrid, and laughable.

Why would I share so much? For a few reasons:

  • Because it helps me to get it out. And this is the number one reason.
  • This is a journey and while it may be primarily MY journey, I am not on it alone.
  • Cancer used to be a word which was whispered from one person to the next, something to fear. It is far too common and affects too many people for us to continue whispering the word, but we still treat the symptoms, treatments, and journey with the same fear. Maybe by talking about all the issues we can move to a realm where we can freely discuss what is happening without that sense of awe and fear.
    • And this cycles back up to the first and second points for me. If I don’t feel free to discuss the gritty details, then I am isolated in my journey. I feel cut off from my support network, and brings everyone else along on a false journey.
  • As my dad used to say, “Life isn’t all peaches and cream.
  • By talking about that which causes fear, lessens the fear and gives us back a measure of control (however illusive)
  • And because I’m not much one for orthodox conventions. Sue me.

A common misconception is that the patient is travelling down the road toward health on their own. This couldn’t be further from the truth. This diagnosis, this journey, impacts not only me, but anyone who cares about me. We all bring our own backgrounds to the particular issue—in this case, Leukemia/Lymphoma + bad guy abnormalities = chemotherapy. While I am the one who is getting bruised, and has had the drips going into me, I am not the only one dealing with the diagnosis. Denny, although he will not admit it to me, is struggling with the diagnosis, and the reality of what I’m going through. Things have not been bad so far, which is fantastic, but he’s worried about what might lie ahead.

Everyone wants to do something to help. It is a natural, communal instinct. When you hear someone has trouble, you want to reach out and help those in need. The problem is that right now, there’s not a whole lot anyone can do for me. Except be there; sending prayers, good thoughts, good vibes, jokes, commiseration, reading these posts, commenting, etc. (Please don’t stop.)

Right now the posts have been primarily focused on those gritty details, but I’m sure I’ll break into other types of posts along the way … I’m a writer, and what affects me affects my characters, so I’m sure there will be a post or two about that in the not too distant future. I haven’t accomplished a lot of writing this week, but I’m okay with that as well. I know when I need it to be my focus, it will be there for me, taking me away from some of the reality.

Triumph of the day: Due to the aforementioned interruptions to sleep last night, I have lost 6 lbs of the water weight which had piled on due to the steroids. YAY!!! for accomplishments. I am still carrying excess water (which is immediately evident when I remove my compression glove—the line hangs around for a few hours), but that the water is making an effort to leave cheers me up. I thought I might be headed into nauseous country this morning, but thanks to my friend Mindy, I took her advice and took the nausea medication BEFORE there was an issue, and ultimately have remained nausea free for the remainder of the day. BOO-YA for the little things. I did have the after-white-cell-boosting fever, but it has now dissipated along with the headache it brought along for the ride. Fortunately, it didn’t exceed the mark where I needed to call anyone about it, so rest, fluids, and eating slowly has prevailed to make this day a good one. My head is still not up to writing, but that’s okay… there is always tomorrow, and with what I hope is another good night sleep, the words will start to flow.

The picture at the top of this post symbolizes how I feel about finally getting sleep. Rainbows have always been very special to me … because they’re rainbows and all colorful and sparkly. An awesome refraction of light. They are the promise of good things ahead.

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