Chapter 15

Our direction changes, back to mainstream doctors & trying to go home

Since my father had arrived in Hawaii, he and my husband had been going to the St.Judes church daily to pray for my health. The church was not far away from where we were staying and they prayed daily to St, Jude, the patriarch saint of lost causes. It was the end of March 1998; I was to the point that all that was left to me was a hope and a prayer. It had been 7 months since the headaches had first begun.

I didn’t have enough of a muscle mass to be able to walk anymore, though I enjoyed the heady feeling of being carried everywhere, like Cleopatra of the Nile. “I want to go to the park, now to the beach, how about just for a walk, back up to the apartment, than back down to the beach.” (All this while living on the seventh floor of the building and, this is a big and, the elevator was broken!)

When I was bored I would have my husband and my mother take turns painting my nails, not just those on my fingers! I kept everyone so busy they didn’t know if they were coming or going. They most assuredly didn’t have much time to feel miserable over what I was going through, they might have felt miserable, with me, and my attitude, and that was OK.

We felt as though we were running out of options. The funny thing was, I wasn’t worried. Daily visits to the doctor weren’t enough so we, my mother and myself, moved into his office so he could work on me, with acupuncture and reflexology, every spare chance he got, right through the night. I remember we even had Easter there in his office. Instead of candy, which, of course, I couldn’t eat, there were little porcelain bunnies. I still have those bunnies as well as an excellent learning experience for later. (My son, has been diagnosed with diabetes, so on holidays we also have alternatives to candy). Not long after Easter we moved out of the office and back into the apartment we had been staying at.

We were in turmoil, questioning what to do next, only to have a knock at the door from a woman who had flown all the way from my home town in Canada, at her own expense, to lay her hands on me. She was sure she could heal me with her touch. She stayed for three days before she went back home. I’m not sure if she felt she had accomplished anything or not. At the time she didn’t leave a very big impression on me, except that she had come a long way for three days. We were at the point where we wouldn’t turn any help away no matter whether we believed or not, and now I wonder today, what really did work?

At about this time, the TCM doctor I had been working with was coming to me, as a last resort, as I deteriorated to the point I could no longer travel easily. I was a mixture of skin & bones, less than two thirds of my original body weight. He tried electrically stimulated needles for acupuncture. I hated it. My mouth was loaded with huge blisters, my temperature was escalating, and finally we decided it was time to go home.

We phoned the airlines to organise the use of a wheel chair, for me to get on the plane. When we told them the circumstances, they apologetically explained about a policy where I would need to be seen by a traditional medical doctor to get approval for the flight home. We went that day to a doctor in the hospital. He took one look down my throat and recommended an immediate tracheotomy. He actually wanted to cut a hole in my throat and put a tube in so that I could breath! Of coarse I refused, Thank-You. (In my youth I was all but a little vain.) I think this was the first time I really felt scared. There was no way I was going to breathe out of a tube. He tried to explain that I didn’t have a space big enough to breathe through and why I was still conscious he didn’t know.

He decided to take a blood sample right there in the office, where after numerous attempts to find a vein, finally with success, my father, who had probably been holding his breath in fear, promptly lost consciousness. (He was so relieved that I still did have blood in my body, he thought maybe I didn’t. And they say I have a big imagination.). When he recovered, we were sent to see a specialist in another part of the hospital. We were seen directly and I’ll admit things were starting to get a bit woozy. He too wanted to do a tracheotomy. Barely conscious, lying on an examining table, again I refused.

He continued on to explain that they wanted to start me on radiation therapy right away, justifying that they had newer technology than in Canada. In Hawaii they had radiation that was pinpoint fine, the worst I would receive would be an upset stomach and temporary loss of some of my hair. Only one problem, needed to be considered, the lump would probably expand before starting to shrink. Hence the need for the tracheotomy.

Still I refused; I was more scared of them putting a hole in my throat than I was of dying. I was probably a little delirious by this point as well, though you couldn’t tell me that. My ego was still out in full force. They booked me into the hospital placing me in a room designated for terminal patients, next to the nursery. They set up an emergency tracheotomy kit, sent me for my first dose of radiation, than left me, in my room, with my family, for the inevitable to happen.