A Further Word about the Beads
Even though my latest CT scan, conducted at MD Anderson Cancer Center in Houston on July 21, indicated that the sirtex procedure (the radioactive beads or fibers) I had five weeks earlier in Bartlesville had not reduced the tumors in my liver to any significant degree, that’s not necessarily the final verdict.
My doctor in Houston indicated there could still be some positive results, although he expected any such results would likely be minimal at this point. And my doctor in Bartlesville says the common protocol is to do a PET scan at twelve weeks in order to determine what the final results are.
Right now, I’m six weeks out, which is only halfway there. So I guess we’ll have to wait awhile longer, hoping the next scans are a little more encouraging.
That being said, I’m in bed right now, recuperating from my 36th chemotherapy session this last Monday. (That’s right, 36th!) My nausea has been good, but the drugs have really sapped my strength. And for right now, continued chemo seems to be the only option I have.
Please Keep Reading!
While the Oklahoman has decided not to continue running the “Life is Real” series in its newspaper edition anymore (except perhaps to run one of my blog entries from time to time), they are continuing the online version. So I hope you will stick with me and keep reading the blog entries online or on my own website, where I’ll be posting them too.
I know I haven’t been posting as much lately, but that’s been due in large part to a busy summer schedule and the medical procedures I had in the last month, which completely knocked the wind out of my sails. Plus, I’ve had a lot of personal issues to work through.
But now that I’m feeling a little bit better and know where things stand with the paper, I’m going to do my best to post regularly, three to four times a week. I still feel as though I have a lot to say. And by the steady stream of letters I receive to the blog, my website, and via email, I believe that a fair number of people have been listening.
So please keep reading! Please respond to those blog entries that connect with you in some way. Share your own stories too. They add depth and meaning and perspective to my posts. And please share the entries with your friends, at least those friends who are open to them.
The Drive Home
It’s a beautiful day in July, and I’m driving home on I-35, just north of the Oklahoma/Texas border. The sun will set in an hour or so, but the summer sky is already preparing for an incredible sunset, as the remnants of rain clouds are setting up shop on the Western horizon.
My fifteen year old son Ford is driving with me. We’ve spent the last four days together with my wife LeAnn in Houston. There, I had my quarterly and thoroughly nerve-wracking medical checkup at M.D. Anderson Cancer Center. We’ve received “the news” from my doctors, and now we’re headed for home, after putting LeAnn on a plane to Denver. She has a conference there and will join us in Norman in a few days.
Ford has been a pretty good sport about this trip and the inconvenience it has put on his summer vacation. He understands that the sorry state of my health takes precedence, at times, over almost everything, even friends and Frisbee golf. He has come to learn over the last eight years that Houston is regular part of our lives, like good books and breakfast cereal.
Ford’s sitting in the passenger’s seat now and picking out songs for us to listen to on the car stereo, which is plugged into his iPod. He’s good at this. For the most part, we like the same type of music, and he knows how to find a song to match our mood. He makes his choice, cranks up the volume, and we sing out loud together.
It doesn’t get much better than this. A gorgeous sunset. Wonderful music. And a father and son driving the open road, singing, doing their best to harmonize.
Fortunately, Ford doesn’t see the tears welling up in my eyes. Thankfully, he doesn’t know how sad I am right now. Happy, yes, for this money-can’t-buy father and son moment. But sad too. Woefully sad. For the news in Houston was not good, and my future seems cloudier now than ever.
How many times have I been to this place, where a doctor steps into a small waiting room and delivers devastating news? At least a dozen, I’d venture to guess.
Let’s see… there was that time when a doctor told me the pea-sized bump on my arm was not nothing–my previous diagnosis–but instead “worrisome.” Then there was the time they confirmed it was actually a very rare and aggressive form of cancer that would require surgery and radiation.
That’s twice.
After that there was the time when they told me that cancer had returned in my arm and that the surgery and radiation I had recently endured had been unsuccessful. One year later, after another surgery and radiation procedure, I received the same bad news again. And then I hit the trifecta the next year, when they told me that cancer had wrapped around my nerve and that it was time to say goodbye to my arm.
That’s five times, if I’m counting right.
Three years later, a doctor walked in and told me my cancer had spread to my liver and lungs and that I had little time left. A week later he revised that diagnosis. This was actually a whole new type of cancer that had originated in my colon before spreading to my liver, but not my lungs. There were more options available, but it was still terminal.
That’s seven.
After chemotherapy commenced, I was given the joyous news that treatments had obliterated all the tumors in my liver. However, a couple of weeks later, I was informed this was not the case at all, that the tumors were alive and well, thank-you. Tests then revealed a certain acne causing drug was very promising for my situation. But after months of treatments, I was told it had not really helped me, but the acne part had worked.
That’s nine.
We then installed a titanium pump in my stomach in order to direct higher doses of chemo into my liver. This was a long-shot, but most people who did the treatment saw at least some positive results. I didn’t. Instead, the liver lesions stayed the same, and now there did seem to be growth in my lungs.
Ten. Eleven.
Last month, a new possibility emerged. Injecting radioactive beads into my liver through an artery in the groin. After thirty days, we would hopefully see marked reduction of the liver tumors, possibly even complete destruction.
Which brings us to this morning. That’s when my doctor entered the tiny waiting room and informed me that the radiation procedure I had endured had had little or no effect on the cancer in my liver. However, the tumors in my lungs had grown slightly while I was off of chemo for the surgery.
Twelve. The dirty dozen.
Whew!
So here I am, driving with my son, trying my best to forget that the little times like these will not last forever. I look into the sky and marvel at the incomprehensible splendor of an Oklahoma sunset. I listen to the music and am amazed at the creativity involved in certain songs.
But I don’t look at Ford, for I don’t want him to know I’m crying.
A Slippery Slope
I’ve been struggling during the last few weeks to regain my strength and “feel good.”
Normally, chemo knocks me down for three or four days and I’m ”dead in bed,” trying to eat and drink and get my energy back. This is followed by a couple of so-so days, when I’ll feel good for stretches, then suddenly bad. But after that, I normally start feeling pretty good again.
Eight good days, two so-so days, four bad days. That’s been the normal routine.
Not the greatest way to live, but doable. More good days than bad, after all.
After the radiation procedure last month, however, my energy was noticeably down. The radiation would remain in me and be detectable for thirty days, which means it only ended yesterday. And radiation does have this way of sapping one’s energy. Plus, during this time I’ve had chemo twice.
As a result, I’ve only had about six or seven good days during the last thirty, less than one good week out of the last month.
The hope, of course, is that this is a temporary setback; that we did the radiation procedure, sirtex, with the hope that it would buy me more time. Good time. I’ll find out the answer to that question next week when I’m in Houston.
But it has given me a rather scary glimpse into my possible future. That is, what it’s like when a terminally ill patient crosses over that slippery slope of hope and begins having more bad days than good.
Can’t say I’m a big fan.
Truth is, it’s much easier to keep a positive attitude when you’re still having more good days than bad. It’s definitely worth it, to trade four bad days for eight good ones and a couple of in betweens. But when you start trading three bad days for one good day, yikes!
I catch myself talking about how crappy I feel all the time. (No one likes being around people like that.) Rather than tackling some projects that need some resolution, I find myself in a chair watching bad TV. Instead of writing, one of my very favorite things to do, I procrastinate or curl up in bed.
Anyway, I’m now thirty one days outside of radiation, and three days past chemo. In a couple of days, I hope to be feeling good again. Just in time to head to Houston for big news.
