Wishing on a Blue Star (2 page)

I have ever known I should have been twins, and for me, the question of when a baby gets a “soul” is forever answered for me. :)

The memory is still so vivid, possibly from the telling, possibly from wishful thinking, but it is the basis for the tattoo on my back, and some day, some day, I will once again be reunited with my brother, whom I have loved always and never known.  How keen is a loss like that, one that cannot even be expressed or substantiated, or perhaps only how foolish.

Regardless, I believe what I believe, and have done so for more than thirty years.  That’s a long time to miss someone, and I miss him still.

Patric

Friday, October 23, 2009

I’ve got a secret, no more...

Wow, gosh. A lot has happened since my last post, and since then I’ve received email asking when I would be releasing something new (Thanks folks!)

I’ve also been pretty sparse in the group lists, twitter, and facebook. Not my usual style, I know, but there is a reason I’m going to share only once, then move on. I told myself I wouldn’t tell folks unless they were directly affected by my lack, and that worked for quite a quite a while, until even strangers asking for new works noticed. Figured it was time to explain myself before I got a reputation I didn’t want! Well, I don’t really want this reputation, but it’s unavoidable at this point!

Have I beat around the bush enough? Too much, I think. I need an editor for my own blog post! One last thing though... Most folks will find this news rather sad. We’ll talk more about that later, but if that bothers you, now’s the time to stop reading.

About a year ago, I found a lump. Honestly, I thought it was another hernia. Meh. Only I noticed it didnt act like the last hernia I had. Well... No medical insurance means no way of dealing with it, so ignore it. :)

Trouble is, about four months ago, it got bigger, and I noticed one leg get bigger, same side as the lump. To make a long, messy story short, it took several specialists, two surgical biopsies and two punch biopsies off my foot to get a diagnosis. (By the way you can see a bit of the punch biopsies
here.
)

According to the oncologist, I have
angioimmunblastic T-cell lymphoma
. It took me a week to remember how to even spell it! :) This is a cancer which most often originates in the lymph nodes near the lungs, but mine started in the groin and pretty much stayed there for a year before it started spreading. That’s part of what took so long to figure it out. (One doctor even said I was wierd. Laugh)

Some of the websites I read say that this particular flavor represents less that one percent of all known Non Hodgkins Lymphomas, which makes me pretty dang special, yeah? Despite the rarity, there is a fairly common chemotherapy treatment they call CHOP. This is an old acronym that used to represent the names of the chemicals, but there have been many improvements since then and the letters hardly apply. In my case, the protocol calls for 6 to 8 treatments, spread out three weeks apart. That means 18 to 24 weeks of chemo. Ugh!

We all know that chemo means getting sick, losing your hair, feeling horrible, blah, blah, blah, and yes, that is true, for many people. Each person is different, so each person is affected differently. In my case, for the first treatment at least, I didnt get any of the normal symptoms. I got the unusual ones. Didnt get sick (yay, cuz I hate barfing) but I did get the mouth sores and the erosion of the esophagus (think of swallowing through a twelve inch long sore throat. Ouch!) and I got the blurry vision. All those are transitory though. The one overriding problem is fatigue. Chemotherapy is after all a poison, designed to kill fast growing cells. Cancer cells are fast growing, as are several systems in the human body, so the trick is to kill the cancer without killing me, too. It is a carefully orchestrated race, administered by a man I trust explicitly.

Those who know me personally know I am very slow to trust, and this guy is phenomenal as a doctor, and as a person. He is the very best of both worlds, and I knew that on my first visit with him. I develop more and more respect for him wth each subsequent visit. Thanks John!

Sorry, I digressed... I just had my second treatment yesterday, and we got some pretty good news, though I swear I will jinx it if I say it out loud. Given that the response rate of T-cell lymphoma is traditionally poor, forgive me for not saying anything just yet, but he and I are both happy. :) I will say that by the sixth treatment, we may find the last two aren’t necessary.

So, with all that in mind, we come to what I find the most difficult to deal with.

Other people.

I’ve known since the second visit to a doctor when he orded the first CT scan that I had cancer. Call it a gut feeling, or the result of hours of Googling. Doesn’t matter. the point is I have had ample time to come to grips with my situation and my “most likely” prognosis, as well as alternate scenarios. In short, I am simply not afraid of the outcome. To put it even shorter, and at the risk of being crude, I am not afraid of dying, a year from now or forty years from now.

People who even allow themselves to think of the word cancer automatically think of slow, painful, rapid decline leading to death, as though it were a given. I’ve learned much about other people by how they react or respond when I tell them the news. I understand their actions, but I cant condone them when they are directed at me, because to put it selfishly, I need all my energy to get me well, not make them feel better. A very dear friend of mine described it thus:
“It’s like choking on a glass of water. Everyone is demanding you TELL them you are fine, when what you really need to do is cough it out.”
True enough! And I finally got my family to understand the concept. Friends, most of whom I am actually closer to, took a bit longer. :)

What I’m going to ask for at this point will sound a bit harsh, and I’ll apologize in advance, but I am somewhat limited in my ability to respond.

I’d like to thank everyone in advance for the well wishes, and the inquiries, and the sympathies, and say they’ve already been sent an answered. Rather than field a bunch of queries for how I am doing,
I’ll usurp my old
work blog
and post updates there.
Probably wont be all that many posts, because frankly, all the drama is done. All that’s left is whatever side effect the chemo is dropping on my head on any given day, and seriously, that’s GOT to be boring reading!

The only thing that matters to me right now is the fatigue, originally caused by the cancer and and now caused by the chemo. Makes it bloody hard to work up enough steam to keep up with the group messages, and even long emails. (The only way I could write this lengthy post is because the first day after chemo, I feel like myself again. Alas, it doesn’t last long.) :)

There is one other thing that really bothers me, and it’s the hardest to explain. According to John, cancer doctors largely ignored complaints for a long time because patients couldn’t really articulate what they were feeling, and few reported it. Now they understand the situation and given it a name: Chemo brain. Goofy name, but man is it a pain in the butt. Different people are affected differently, of course, and for me, I lose focus, big time. Can’t think of the word I want, and the biggest hassle of all is that it’s bloody hard to write! It’s like being distracted by every random thing in the room. That’s why I haven’t written much in the last three months. In fact, the Santa Mug was written before the chemo while I was still undiagnosed. Whew! What a task that little story was! It’ll be out in December as part of the
Dreamspinner Mistletoe Madness
and can be purchased separately (royalties!) or as part of the month long package.

So to recap and wrap up, you’ll see me occasionally in Twitter or on the groups when I have the energy or when I am not trying to write. If I’m not there, it doesn’t mean I don’t want to be, trust me. :)

Think good thoughts I can find a way around the chemo brain thing, because all the stories are still there, but they don’t have a convenient outlet right now, and I’d love nothing more to get them on paper and into your hot little hands. :)

Cheers all!

Love,

Patric

Friday, October 23, 2009

Chemo, second treatment.

I really wish Google allowed it so you could open two different blogs at once. Grr...

I have to post something here so folks coming in from the “big announcement” will find a destination...

So, second treatment. Mildly sick, not tired (Wasnt tired the day after the first treatment either!) Got the damn hiccups though. Partly a result from the last treatment and the erosion, and partly as a side effect of this treatment. As I said, I get unusual side effects. Meh.

Still forgetful, of course. Short term memory seems the most affected. Gah. PITA!

Oh, and here’s a new thing. My taste buds are shot. I have no idea what thats all about. Time for more research!

I havent put chemo brain to the test yet. Havent tried to write. Wanted to get the blog posts up first, because it took like four hours to answer all the messages. Hopefully the post, and these updates will answer enough questions that when I do feel like writing, I’ll actually have time!

The kids came over to shave my head. Let me be the first to say that shedding worse than the cats sucks, hard, and doesnt buy breakfast afterward! Gods. I know that coughing spate the other night was me sucking stray hair off my damned pillow!

Ok. Head shaved. Looks odd, but no where near as strange as I thought. I’d been ramping up for it anyway, cutting my hair shorter and shorter. This was the last logical step. What I didnt expect was how velvety my scalp feels. So strange. No wonder everyone always wants to rub the dang thing. Heh

Cute guys get it for free. Everyone else pays a quarter. lol.

Ok, thats enough for now.

Thanks for the good thoughts and well wishes!

And remember please... I am good with whats going on, and you should be too. To make a really BAD pun, “Don’t cry for me, Argentina.”

Lol

Saturday, October 24, 2009

I’m touched, though not in the head. :)

Thank you everybody, for your thoughts, wishes, prayers, and comments. To say I am touched by them is a massive understatement. Flabbergasted might be closer. :)

I havent written (yet) today, but I did manage to get some chores done which have been nagging at me. We live on a couple of acres, and tradition holds that it is my job to “button us up” for the coming winter. Last winter we lost chunks of several trees due to ice and storm, and the resulting wood laying around got split with the help of a neighbor and a nifty machine. I want one!

The drawback of course was doing something with it, so some friends came over and stacked it for us. I remember a time when I could move that fast, for that long! :)

What was left was a bunch of twigs and limbs that would cost more energy to cut up than they would produce, so it got put into the burn pile. Or rather, added to an existing burn pile. (I was working last year and missed burning season.) Today, finally, I got caught up. Remember, after twenty five years of doing this, the habit is strong, and it was nagging at me. I blew a wad of energy, and it took all bloody day, but it’s done!

Just a few more minor chores, like making sure the generators run properly and draining the irrigation lines for the garden, and I’ll have nothing but drugs to distract me from writing. Whoo hoo!

Oh, I found out that it’s the Vincristine that’s probably responsible for the loss of taste. This is a new side effect for me. I was fine the last time around. I guess that means Papa has to do the cooking still. I can just imagine HIS face if *I* were the one to season the chili. :)

Lets see, last bit of news. I got a bit more than 500 words written last night. Pure crap when you consider I used to get 5,000 or so in a day, but words is words! I probably would have gotten far more if I hadnt written the blog stuff, but that was sort of important. I’ve lost a huge sense of guilt from not being able to answer emails as fast as usual, and thank you all for accepting the admittedly odd request I made. It truly does help a great deal. :)

Now see? Didnt I warn you that these updates would be boring? Laugh. So just for fun, and for taking the time to slog through this nonsense, here is a random bit from the story I am currently working on. It’s the opening to an adventure-ish thing that I started as a lark. Often times, since I am pure crap at outlining (Shh... Trade secret there!) I woll start with a single sentence. In this case, it was a single word. At the time, I was having rather severe chills, so the word made perfect sense to me. :D

1

Snow. Miles of the stuff stretched out before him like a vast white ocean, broken only by a small dark hump already half buried by the constantly moving drifts. That dark shape was Merrick’s destination, and it would be home until this latest storm blew over. The sheer immensity of the sky overhead, a leaden gray-white in the afternoon light, seemed to bear down on him as he pulled the zipper on the small tent’s forward flap.

“Jeez. How far do did you have to go? Katmandu?” Dale Andressen chided Merrick as he hunched himself inside and zipped the flap shut.

“Just a few yards out,” Merrick replied. “I dug out a small nook to get out of the wind.”

“You should have just peed in the bag. That’s what it’s for, you know.” Dale scowled at his partner, but the expression on his face was as loving as it was severe.

“I know, I know. I just hate dragging the damn thing around. Besides, you can’t write your name in a bag.” Merrick grinned as he pulled off his gloves and outer jacket. The snow already packed up against their small tent was a perfect insulator to catch and retain the heat from their small stove.