Category: Cancer

The PICC line went in yesterday, as planned. What wasn’t planned (by me anyway) was all the blood. It turns out even veins can bleed, particularly when you’re running a little low on platelets.

Tomorrow I go in to have my PICC line installed. I’m not afraid to admit that I’m a needle wuss, or that this transfers nicely to long plastic tubes that snake through my circulatory system. As silly as it may seem, I may be more worried about a stupid plastic tube than the chemotherapy.

The chemo starts Tuesday. I see the oncologist in the a.m. to be fitted with my porta-pump (complete with fanny-pack), and I carry that around for seven days. The following Tuesday I turn in the pump and I wait.

For the most part I think I’m ready. Although the chemo isn’t supposed to be too bad, I’ve got my script for Compazine. I’ve got my brand spankin’ new Logitech Harmony remote all set and ready to go. I’ve got a stack of books. And as always… I’ve got my trusty PowerBook.

Here’s the bottom line: the bone marrow biopsy confirms the leukemia diagnosis.

But that’s not even half the story.

I was leaving my house 30 minutes before my appointment with the oncologist to go over the results. The trip normally takes 10, but there was only so much waiting I could stand… I needed a little affirmative action. As it turns out, traffic was terrible – and with good reason: the road was closed. This was a definite set back. I’d left early, but with traffic I was pushing it, and a road closure was the ultimate nonstarter. The woman in front of me waved the officer over to ask if she could go through – she was on her way to the hospital. “Is it an emergency?” the officer asked. “No,” the woman replied. “Then you can’t get through.”

So I went around. In this context, “around” means 4-5 miles in stop-and-go traffic. By the time I got “around” my appointment had come and gone, so I called the office. “Do you want to reschedule,” the receptionist asked. “No, not really.” I replied. “I was supposed to be coming in to find out if I have cancer, and I was hoping I didn’t have to wait any longer to find out.” “Where are you?” She asked. I proceeded to tell her where I was, where I’d been, and why I was running late. She sounded pretty sympathetic, and she gave me some directions. “Does that help any?” She asked. It didn’t really, but I didn’t want to be rude… she was only trying to help… so I told a white lie. “Yes, it did. Thank you. Hopefully I’ll see you in a few minutes.”

As if.

I got to the road the hospital was on (on the opposite side of the hospital from the road closure), and low and behold… it was closed here too. Now I was in full-bore panic mode. The hospital was in between two road closures, with no major crossroads in between. It might as well have burned down.

I called my doctor’s office again to explain the situation. “We’re not aware of the road being closed,” she said. I don’t even know this person and already she’s calling me a liar. “Why don’t you see if there’s another way around and call me back in five minutes,” she said. “Do you know of another way?” I asked. “No.”

So I did what every other proud man would do in these circumstances… I called my wife for help. It turns out she didn’t have any ideas either.

Now when I said I was going around earlier in this entry, I didn’t mean I was traveling in a full circle… just half of one. While I was on the phone with my wife and the doctor, I began the process of closing this sorry circle. When I got back to the road I started on… an hour after I left home, thirty minutes late for my appointment and twenty minutes after the receptionist told me to call back in 5, I was resigned to my fate. I was going to have to reschedule. So I called the doctor back to do just that.

“I’m sorry, I just spoke to the doctor and he says he needs to see you today. He says he’ll wait for you.”

By this time I’ve run through my repertoire of swear words at least three times, but his prompted one more go through (after I hung up of course). I was sure this meant REAL trouble. We’d already discussed the possibilities, so what could possibly be so important that he needed to tell me today? Unless? Was it something worse? Was it something that needed treatment right away? Was it something that couldn’t wait? Was I dying?

Fuck me – Fuck me – Fuck me – FUCK ME!!

This was when I decided to walk. The first road closure was a little less than a mile from the hospital, and there was a big nursing home right there. This meant I could drive almost right up to the closure, park at the nursing home, and walk the rest of the way. So what if it was 90 degrees in the shade. So what if it was an up-hill walk the whole way. At this point there was no denying me. I was going to get there or do a lot of sweating trying.

I pulled into the nursing home and drove through the parking lot to the visitor’s parking area. This brought me right up along side the officer who was stopping traffic, and I could feel his eyes on me. More than a little intimidated, I stopped and parked. Maybe I could talk to the officer and see if he’d let me past. Maybe if I was really nice and explained the situation he’d give me a break. I walked through I short stand of woods to get to him… and low and behold… there was a way out, just beyond the closure! At this same moment I heard a woman screaming. She was in a car trying to inch past the officer, screaming that she was bleeding and she needed to get to the emergency room. When I heard the officer say no, I stopped walking. Sensing that the officer might be distracted dealing with the hysterical woman, I made a break for my car and hit that opening from the parking lot, just beyond the road closure, like a man possessed. The police didn’t give chase and I made the short drive to the hospital unmolested… in less than a minute (I might have been going a little faster than the speed limit).

There was no waiting in the office once I got there… no one else was able to get there. That’s when I heard why the road was closed… there was a gas leak just up the road (a little way up from where I turned in).

“A gas leak?”

“Yeah, we saw it on the internet a few minutes ago. No one’s said anything to us though. You’d think they might have evacuated somebody if there was a gas leak.”

Now I felt really bad. Not just bad, but that sick feeling you get in your stomach when you know you’ve done something really, really stupid (as it happens, I know it well). I drove around for 90 minutes battling traffic, road closures and panic attacks. I got a good scare from the doctor, ran from the police (well not exactly, but I’m prone to fits of exaggeration when I’m excited), and now I’m told I could have blown up?

The nurse took me back and my blood pressure was high.

I can’t imagine why.

That’s when the doctor came in and told me I have Hairy Cell Leukemia, just like he thought. We went over a few questions and we decided to start chemotherapy next Tuesday.

Frankly, it was a little anti-climatic.

You know what? It sounds a little funny now.

Maybe you had to be there.

If you’re going to schedule a doctor’s appointment to go over test results, ALWAYS try to schedule it for early morning. Any time you have between waking up and walking into that office is a complete waste of time.

“Sure,” you’re saying to yourself, “that’s pretty obvious.” Take my word for it, if you’re scheduling the follow-up right after you’ve had the test… and the test itself has any distraction value (like visualizing a core sample being taken from your pelvis as the doctor grunts like he’s lunging for a running forehand on the tennis court), this is not always the first thing on your mind.

If you have to, write the words “I want an early morning appointment” in permanent marker on your forehead. It’ll wash off in a few days… and a few days of ridicule is far easier to bear than a few hours of pre-appointment, self-inflicted, mental torture.

Today was the day I told everyone at work about the cancer. My days of tip-toeing in and out of the office when I’m not feeling well are at an end. I don’t have to feel compelled to lie when I’m asked how I’m doing any more.

And yet, I feel terrible. I found myself walking from office to office trailing sadness and depression in my wake. I told myself it wasn’t my fault; that it’s not anyone’s fault when they’re sick. Apparently I don’t listen very well… not when I’m doing the talking anyway.

I felt like I was in a race: trying to tell everyone before they heard it from somewhere else. I felt horrible for telling one person in particular on the phone. I was hoping to do the telling so I could answer all the questions, but telling someone on the phone? On their lunch break? I’ll bet it was quite a break.

One way or another, for better or worse, I’m done telling. If you’re a glutton for punishment (and if you’re a regular reader than you must be), there are a few entries I had previously marked as “private,” under the category “Cancer.”

**Note: Clicking the word “Cancer” next to “Posted in” under this entry will pull up a list of all blog posts on WordPress.com with the tag “Cancer.” In order to see a list with just my entries, select “Cancer” on the “Categories” sidebar (from the drop-down menu), on the right hand side of this page.

In the last month or so I’ve learned a few new terms, and become more intimate with a few familiar ones.

There’s CBC (complete blood count), hepatosplenomegaly, neutrophils, monocytes, thrombocytopenia, anemia, and Leukemia.

I’ve also learned new variations on shock, anxiety, guilt, fear, depression, and fatigue.

I’ll cut to the chase: two doctors (my “PCP” and my oncologist) believe I have a form of cancer known as Leukemia; or more specifically, a form of Leukemia commonly known as “Hairy Cell Leukemia” – or HCL for short. It’s a chronic form of the disease that can go undetected for quite a while. It’s relatively rare, it’s exceedingly treatable, and it has a ridiculous name. Come on, who is going to take me seriously when I tell them I have “hairy cell leukemia?” It sounds like something a fourth grader would make up (and I should know).

It all started with an innocent refill on my allergy medication. My doctor went ahead and approved the refill at the pharmacy, but gave me a call asking me to come in for a visit. It seems it had been a little while, and my doctor wanted a little face time – for no reason in particular – just to see how things were going. (I take this as a sign that I have an exceptionally good doctor.)

The visit resulted in a blood test – again, for no particular reason – just to see how the old machine was running – and it turned out it wasn’t running particularly well. There was a reason, other than just “life,” that I was so tired all the time. The proof was in my blood.

I got a call-back – and not the good kind. My second appointment with my doctor began with a list of things that were good about my test. It was quickly apparent that it was a short list. Then we went through a slightly longer list of what looked funny. Finally, we went through the list of things that were a little troubling.

Now I’ve been to see the oncologist twice – this last time to have a core sample taken from my pelvis (also known as the “bone marrow biopsy”).

I find myself in this odd place. The best way I can describe it is the eye of the storm… but even that’s not quite right. Everyone seems nearly certain of the diagnosis, but no one’s ready to discuss treatment until this latest test comes back.

So I wait.

My body is in active (albeit slow) revolt.

And I wait.

It was everything I thought it would be and more. It wasn’t very painful but I couldn’t get my mind off the fact that they were driving a big hollow needle into my back (or more precisely, my pelvic bone).

They had me lie on my side in a fetal position, then gave me a local anesthetic. Then they said I’d feel some pressure, but not much pain. They were right on the pain part… but a little pressure? Imagine laying on a table on your side and being pushed across it at the end of a needle. That sums up the joy of a bone marrow biopsy.

It didn’t hurt much, but my nerves were so shot I thought I was going to lose my breakfast. Now it’s over, and it still doesn’t hurt much… just a mild ache when I sit or stand too long. But my mind is still having trouble recovering. I still can’t quite get over the fact that there’s a narrow, 3/4 inch hole in my pelvis.