Friday, October 23, 2009
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