:: Day 169: Hey, Let's Wait Some More! ::

Submitted by TLHines on Sat, 10/20/2007 - 17:58.

Today, I go to see my local oncologist (a person I'm so thankful I've found) and we discuss what to do next. The answer is a now-familiar one for me.

We wait.

We look at my blood counts, which are still in the normal range, and discuss a couple of precautions I'll need to take over the next several weeks as counts continue to drop. I should wash my hands often, for one. This isn't difficult for me because I'm somewhat obsessive/compulsive and convinced every other person on earth is dirty and out to get me by sending radiowave transmissions into the secret brain implant the government placed there to keep close tabs on me several years ago.

Did I say that out loud?

Okay, handwashing isn't a problem.

I should also avoid large crowds for a few weeks. Also easy, because, you know, all the people in those crowds are out to get me. Brain implant, secret transmissions, and germs.

My wife comments that this whole experience has made me more paranoid and mistrusting of other people. But I'm pretty sure she's out to get me, too. I've seen her using all the soap around the house, just so it will be dirty when I use it.

I'm just kidding about all this, of course; I hope you know that by now. I know everyone's not out to get me. Only those of you who have that invisible third eye on your foreheads, which only I can see because of my secret brain implant from the government.

Anyway, those are the only real precautions over the next several weeks. If my blood counts get too low, I'll have to be extra careful about infections, viruses and such.

Since I'm no longer in my radioactive phase, I've begun to look for possible side effects of the treatment. Some mild abdominal discomfort, which I've had since the beginning, and which Bexxar prescribing information tells me is a side effect in about 30% of people receiving treatment. Nothing too difficult or unusual; I can handle it. Also, oddly enough, it feels as if my taste buds are a bit fried. My beloved Diet Dr. Pepper tastes more acidic. In fact, most foods taste more acidic. I still have no desire for Reese's Peanut Butter Cups, which heretofore have been the world's Most Perfect Food in my book. This is especially unfortunate and tragic, since we've purchased a huge bag of the candy for forthcoming trick-or-treaters. Usually, I'm able to eat about 50 peanut butter cups, give out about 10 to trick-or-treaters, and tell myself that we had a lot of trick-or-treaters this year because all the peanut butter cups are gone. This year, however, I may not be able to eat those peanut butter cups. Halloween just won't be the same.

A few taste buds are a small thing to sacrifice, though. So I won't complain. I'm feeling good, physically, emotionally and spiritually. I'm convinced this treatment is exactly what I was supposed to have; I've felt guided to it since the beginning.

So now, as I said before, the waiting game begins anew. In the clinical trial for people who had Bexxar as an initial treatment, people had a Complete Response (a remission) as fast as two months--55 days, to be exact. So I might expect to see a complete remission before the end of the year.

On the other hand, at least one person went 693 days before getting a complete remission. I'm no math major, but I know 693 days is roughly two years. Yes, two years.

So, if I get a complete response, it might be as soon as two months...or as long as two years. Once again, I have an opportunity to regret ever praying about learning patience.

Still, it's nice to know that, whatever happens, I won't be doing anything else for two years. After all (provided there's not huge progression of the disease or other factors), I might need to wait that long to get the good news of a complete remission. Maybe even longer, because I might be outside the norm. God knows I'm outside the norm on many other factors.

So, I'll wait. And in the meantime, I'll continue to keep involved. I've been asked to speak to other follicular lymphoma folks here locally, and since getting some local coverage in the Billings and Missoula newspapers a few weeks ago, I'm hearing from more and more folks all the time. I need to view this as an opportunity to learn more patience, which is a Good Thing. And I need to view this as an opportunity to speak with other people, help them through their own dark times. I need to learn from this, and help teach others from this. I firmly believe there is opportunity to turn anything bad into something good.

Who knows? Maybe the government will even remove my secret brain implant.

Thanks for writing

Just found your blog, after you found mine, and commented:
"A Pastor's Cancer Diary"
http://www.cewilton.blogspot.com

Thanks for what you're doing, in keeping this journal. You're a wonderful writer. I appreciate your humor - not what I'd expect from a "Noir Bizarre Fiction" author, but hey, we've all got to work against type sometime .

I'm especially interested to see that you're receiving Bexxar, as that (or its close cousin, Zevalin) may be in my future, as well. I'm looking forward to reading back through your posts, to get the whole story.

Carl

All things for good?

Hey Tony, I have everything crossed for your complete remission and the return of your hankering for Peanut Butter Cups. Tell me, did you take them apart and eat the center first or did you just get the whole experience by eating them intact? (Just a test to peg your personality and report back to the elders, uh, I mean government.)

Last week I emailed "Day 154-160" to my dear friend, Donna. Donna was my "big sister" in nursing school. (Swirlies, Vaseline on the toilet seat type tormentor "big sister") Not only did she give me guidance on getting into the bars without being carded, she also showed me how to get past the nuns' check-in point at the dorm. She gave seasoned lessons on the fine art of vomiting silently and treatments for hangovers.

Since Donna and I are both from Butte, we were bonded from the beginning and we've remained close friends for that past 35+ years. We live in different states and sadly don't see each other much.

To the point. I sent her the entry from your blog to show her that I do some really interesting stuff at work while meeting some exceptional patients... author/husband/father. She wrote back and said, "It was really strange to receive this from you out of the clear blue. We haven't said anything to anybody yet but our daughter's husband (they have 4 children under the age of 6) was just told yesterday that a CT scan shows he probably has an 80-90% chance he has lymphoma. Their son-in-law has been scheduled for an immediate biopsy.

And so it begins.

The whold Peanut butter cup thing

Tony - don't think of the peanut butter cup thing as a bad thing, think of it as an opportunity for a start to healthy eating. WHO AM I KIDDING...you will soon find some thing as equally sinful and before you know it you will be saying so long recees, hello _______! (fill in the blank!)
Keep the spirits up...who know's the next thing might just be good-for-you-granny smith apples (of course, they are dipped in carmel!)
Should I expect BEXXAR boy to be out trick or treating?
JEK

You're a hoot!

I just love reading your updates. Not a funny subject but you sure know how to make me laugh.

I look forward to hearing the good news from the long awaited Bexxar treatments.

And may you please get your Reese's desire back. Atleast before Easter and the arrival of the Reester Bunny!

Please tell me you haven't lost the taste for Coldstone Creamery!

Hang in there!!!

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