Chapter 19

An education in experimental drugs

From here I was sent home to the Cancer clinic in Victoria, which was still in the hallway at the Royal Jubilee. They were quite surprised to see me to say the least. Treatment began right away. Due to the fact that they had virtually no extra space, I would have the prescribed drugs administered while in a seat in the hallway. The spinal tap, fluid taken directly out of the spine and replaced with the exact same amount of chemotherapy drugs, was done in a closet like room than, with Tylenol 3 to compensate for the severe headaches the taps seemed to cause, I would go home.

We were told that if I didn’t move for 24 hours after the spinal tap I would lessen the chance of getting the severe headaches. This was difficult to follow through on though since I had to be moved to go home. I realise now that not every one gets headaches after spinal injections, if I had known then, that headaches are my response to stress, I might have been able to alleviate them to a much better degree.

My original, I guess you could call it, disappointment, of the set up at the Jubilee didn’t diminish and my prejudices seem to colour my patience with the doctor that was assigned to my case. As the weeks turned into months and the side effects kept getting worse. I seemed unable to get across to him the seriousness of the difficulties I was experiencing with the experimental doses of these drugs. For the first time I knew what it was like to be in total agony, (the first time as I remembered it, my memory is really short when it comes to pain).

All my muscles had stopped functioning, and I was even beginning to choke on my own saliva, by the time we decided to pull ship and I was finally ambulanced to Vancouver. It could have been that the doctor in Victoria either was totally ignorant about the drugs I was on, or he figured I was going to die from the drugs or the cancer and there was nothing that could be done to change that.

Fortunately we caught on. I was in such misery that I could understand why people die of Cancer, living with and fighting it was way more painful than anything I had experienced previously. (I think the prednisone was making me whiny). This fortunately turned out to be a one-time excursion in to hell and the rest of the chemo program was, compared to this, a piece of cake.

As it turned out I had been overdosed on one of the drugs, vincristine, which had contributed to all of my muscles seizing up. To this day the tips of my fingers still feel slightly numb, just to remind me of what I went through and the fallibility of some doctors. We tend to forget that they are human too. The doctor in Victoria in his ignorance, it seemed, didn’t realise the need or even his ability to adjust the doses. It’s a possibility that with a limited knowledge of the side affects of this new drug program as well as being totally overburdened, he underestimated the seriousness of my condition, and he could have just imagined I was exaggerating, as some side effects were necessary to the programs success. Regardless of the reasons, time being of the essence, we gave up on him, knowing that Vancouver was far better equipped all around, as well as seemingly more educated physicians, in not so crowded a space, to help me.

Fortunately the Doctor in Vancouver had a more informed opinion of what was happening to me. He immediately took my off the drugs and put me on morphine for two weeks, till they could resume the program, at a more acceptable level. Needless to say I continued my treatment through the Vancouver clinic. Other than this temporary set back, (learning experience), with being overdosed, the rest of the program ran fairly smoothly, chemo wasn’t any worse than repeated vaccination shots, other than the spinal taps which I continued to hate.

There was one time I nearly had to have a blood transfusion from haemorrhaging, though this was more due to information falling between the cracks and my own pure ignorance. I had been at a party, drinking hard alcohol when I started to haemorrhage. After being ambulanced to the hospital I was duly informed that you don’t drink hard liqueur after being injected with cyclophosphamide. The Vancouver clinic, which I had been brought to at the time, was surprised that Victoria hadn’t told me, while the Victoria clinic, was just as surprised that the Vancouver team hadn’t informed me. Being that I was only sixteen, maybe they all didn’t think it was something that needed to be said.

From one learning experience to another, after this I learned, about the beneficial effects of marijuana. One of the interns in Vancouver came over to me after an extended session with vomiting, after my injection, and informed me, on the QT, that The THC in marijuana could help me with the nausea. Now days, I’ve heard, they actually have a THC (Marinol®) pill for cancer patients. At the time though, I had to deal with smoking the stuff, and illegal as it was/is, the stuff I was able to obtain was easier to eat than it was to smoke. It was horrible! To this day if ever I smell it, anywhere, I feel ill. At the time though, it may have saved me from any more chances of haemorrhaging.

The program of drugs would have gone smoothly after these initial breaking in difficulties, if it weren’t for my ever-vivid imagination. I had this extreme stress reaction whenever they would poke around in my spine. I didn’t mind any other needles it was just the ones I didn’t feel I had control over, the ones where I couldn’t see what they were doing, or exactly when they were about to inject. I had the same difficulty with the bone marrow taps, if only they could do them where I could see.

It wouldn’t have been so bad if I didn’t imagine the needle they were jabbing in, as the size of a huge nail and the instrument they were applying it with being a sledgehammer. (Yes visualisation does work!). I imagined the bones where they did the taps to be riddled with huge holes and were about to fall to pieces with what little was left. Having a well-developed imagination is all and good and, it didn’t serve my best interest in these circumstances. I could have done with one big perception change.

During the extended months of the chemotherapy program, I kept remembering back to all that I had learned about the body and how to take care of it. I wasn’t always careful, but for the most part I ate reasonable healthy and continued an extensive vitamin program as well as continuing to scrub my skin after showers and baths to help eliminate any of the toxins I was sure to be getting rid of through the regiment of drugs that I was on.