Life of a Chemo Patient

As I announced in my previous post, I went to see the pain physician on Friday June 5. My oncologist had recommended a specific doctor, but I got another, as the pain department policy does not allow appointments with a specific physician. I consider this an outrage, as pain is one of the most subjective and intimate issues in care.

When I entered the room I was told that my file had already been read. Maybe it’s due to previous experiences, but I would have preferred to hear “good morning, please have a seat, I went through your (paper) record, do tell me how you can think I can help you”. Unfortunately, that was not how I perceived it.

Nevertheless, I gave an account of my version of neuropathy, my previous troubles with Ritalin, the fact that my problem is not a real definable pain, but the constant vibration, the feeling that I walk 5 marathons a day and perform constant weight lifting. And most of all, the problems I have with focusing, concentration and coordination.

After an extremely short physical exam, the pain physician concluded that my case was definitely a-typical, but that a traditional treatment should be tried. The choice between an anti-depressive or an anti-epileptic treatment turned out in favour of the latter. I told that I have a tendency of over-reacting to medication. The answer was that we will start this slowly and after 3 weeks we will evaluate. (note the beautiful “we”). So the prescription was 2×75mg Lyrica daily. My suggestion to start with 1×75mg was countered with the remark that such a dosage would not create the effective drug level. And there were side effects but I was not to bother. Apart from this remark, nothing more was mentioned about side effects. This whole visit took less than 15 minutes.

So I went home, read what was said on the internet about Lyrica and with quite some apprehension I took my first 75mg at Friday evening 10pm. This might be one of the more regretted decisions during my life as a chemo patient. The next morning my worst fears came true. It was the start of a 2 day nightmare. This is what WebMD has to say about side effects: “Drowsiness, dizziness, confusion, difficulty concentrating, unsteadiness, fatigue, swollen arms/legs, increased appetite, weight gain, nausea, dry mouth or constipation may occur.” Those of you who have followed this blog will notice that these side effects are identical to the problems I want to be treated for. In my opinion the pain physician should have noticed that.

To avoid accusations of stopping taking it before a certain drug level had be reached, I forced myself to continue for 48 hours, so 2×2x75mg. All the above mentioned problems I have been suffering from for the past 2,5 years and for which I have desperately been seeking treatment produced themselves tenfold of the normal level. It was horrifying beyond description. And it was only then that I remembered a remark from my oncologist about a year ago, that he would not advise going the anti-epileptic road.

For more than a week I am trying to recover. I have hunger attacks like during the best Prednison days, followed by attacks of nausea; my neuropathy, i.e. the vibrations, the fatigue in muscles and joints, is still worse than it was before taking Lyrica. And the first 5 days I have been extremely depressed. But a new phenomenon is presenting itself, my head switches off. More than a week after ending this Lyrical ordeal I still find myself suddenly dozing off in the middle of working, reading, watching TV.

This was certainly not the “art lyrique” I studied passionately a couple of decades ago.