Peter Lalor

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May 04, 2005

Return of the journal… and cold sores?

I last tried—and failed—to journal five days ago. I last succeeded almost two weeks ago, and even that was short and stressed. I’ll try again…

I’ve been pretty fragile lately. Dylan hit me in the back of a hand with a hard book recently, causing me to be a wreck for awhile. I’ve been so fragile these past days.

A month or so ago, I met with a doctor who interviews people who have filed for disability pension with Centrelink, as Jennifer had filed an application for me. Recently we received a response from Centrelink saying that the application was denied because my treatment is not complete and my condition is not stabilized. In other words, anything could happen. This was some of the best news we had received regarding my condition and we were so pleased that any “denial� about the application itself was utterly trivial. They had us come in for an appointment on 26 April to see if we had any questions or disagreed (none of either that I recall) and I told the interviewer how pleased I had been by the denial, given the previous dire prognoses I’ve received.

The next day I had a session with Gerry, the Aboriginal healer. It went half again as long as usual—about ninety minutes—and Gerry says I’m doing well. I had a fairly strong pain in the right side of my head near the end of the session, and Gerry worked to address that. As always, I found the session to be very enjoyable and positive.

Last week I received an email invitation to a concert performed by Joseph, whose employer I had done consulting for years ago when I was in the U.S. He hadn’t known that I was no longer there; hence the invitation. I replied, wishing him well, and as my emails now include the address of my web site he found out about my current medical journey. He then wrote me a very beautiful email offering me several lovely supportive things, including a pill created by a Tibetan doctor. I replied thanking him and asking for information so that Jennifer could either research it or pass it on for a volunteer to research for us. He replied, supplying some web sites containing information. Jennifer saw the email before I did and after asking whose Joseph was, read me his own comment on the medicine, in which he explained that the pills had been made by the Tibetan doctor in total darkness during a six-month retreat. Sixteen years ago he had given Joseph some of the “Precious Jewel Pills�, saying that Joseph would know when to give them to others and that they last essentially forever. Jennifer and I both knew that no research was needed, but I was worried about how he could get the pill to me, worried about it a strange pill being put in the mail and causing undue consternation with Customs. Yesterday, Monday, it was already here, and I was immediately extremely excited. It came with instructions which I skimmed, Joseph having already given me some. The first thing that caught my eye was that it could be stored on an altar until ready for use, and so I added it to the altar we have in the house for my healing—well out of reach of the kids. Other instructions that he had given were that it be taken on full or new moon, never exposed to daylight, and that a female must not see it. Jennifer had read this, and so had simply handed me the package when it arrived. The next appropriate moon is the new moon, in five days. As I’m pretty sick with a cold right now, Joseph says I may need to wait until the full moon. We’ll see, but I remain excited. I feel strongly that there was no mistake in Joseph’s inviting me to something I could not attend, just as there was no mistake in my reply which stated nothing about myself, only good wishes for him and a signature giving my web site. That was all we each need to do to get the ball rolling, and this ball makes no mistakes.

Another thing that arrived in the mail with this was a medicine from the other side of the world, England. It is plant extracts, salvestrols, that are being found to be highly effective in some people—about one third—in fighting cancer. Jennifer was told of a women who failed to respond to all the usual treatments—surgery, radiation, chemotherapy—but after twelve weeks of taking salvestrols was given the all-clear. I started taking it immediately. It either works or it doesn’t, but I agree with the English doctor Jennifer discussed it with: “Well worth a shot�.

That evening—last night—I was home alone for a little while and started thinking about my mum. I began to carry the phone around the house. Guess who? I only answered “Hello� out of habit; “Hi, mum� would have been fine and I knew it. I trust this sort of thing more and more. The truth is out there.

Jennifer and I have been on the trail of getting my dendritic cell vaccine trial started for around three months now. We had met the young doctor running it, Richard Loddi (sp?), back on the 14th of March (journalled at the time) and he has been trying to get me added to the trial ever since. Lacking any response from the board he finally recently asked the neurosurgeon who had performed my neurosurgery, Dr. Walker, to approve my being added to the trial. This is necessary as, being young, he lacks the superiority while Walker does not. So I’m in. Finally. The two doctors seem to be talking about me about more than that, as Loddi knew recently that Walker had not yet received my most recent MRI. Actually, Walker has since received my current MRI and compared it with the previous one and sees no need for further surgery at this time. Phew. Walker also reiterated that he wanted me to get radiation soon, and it seems that I will. It feels like the thing to do, even as I want to as little as I wanted surgery. Jennifer and I had sat down during the day together and one after the other stated our feeling about the radiation. It is surprising—again—how in sync we are—again—regarding an upcoming major medical undertaking that we had not recently discussed our feelings about together. We both feel some trepidation about the procedure, but that the danger of waiting is more severe. We also feel strongly that we have an amazing team in place—both physical and non—to aid us in dealing with any problems usually caused by the radiation. We had also felt that the unexpected way in which we had been led to the radiation oncologist, Dr. Alex Mirakian, was a good indication that he was the right man for the job.

So now Dr. Loddi was ready to take my blood and get started, and Dr. Mirakian was ready to prepare the radiation procedure. The only minor glitch was that they were both ready on the same morning at almost the same time, over an hour’s drive apart. We arranged to start with Dr. Loddi in Brisbane first, early in the morning. This meant that we needed to spend the night in Brisbane again, and so Chloe spent the night with her friends Chiara and Rosa while Jennifer and I drove to Brisbane in the night with a sleeping Dylan. Jennifer was very tired on the late drive, and so to arrange distraction I tried to get my mum to call us on our mobile phone. She did, but mainly to say that she was stated the cost upon dialling from overseas and that it was more expensive to call the mobile. From some countries it is, from others not. So she and I made each other laugh briefly and then I returned to the task of trying to distract Jennifer on the two-hour drive. I told her stories about how I used to read Hunter Thompson’s classic Fear and Loathing in Las Vegas to friends on camping trips and always purchased any used copy that I found and gave them away. (This was very popular, as I yet again own no copy despite buying countless copies myself over the years.) Telling these stories put me straight into my difficulties with names. First I struggled to recall Hunter’s. Then the book’s. And on and on. It must be good exercise, but it is certainly trying.

We finally arrived at a hotel quite late, with Dylan waking up right before we found it. We were all wrecked and Jennifer was exhausted. I understand my illness sufficiently that I know that I can safely put the lives of myself, my family’s, and other drivers with my own driving. But this does not make it legal and I understand and respect that. So Jennifer drives to exhaustion.

Very early this morning we hopped out of bed and got ready to go to the hospital. The hotel bed had taken care of my back (he says facetiously) and I was stiff as a board. We went straight (me literally) to the hospital at which my awake craniotomy had been performed—home sweet home—and met up with Dr. Loddi. He took a painful stab—hey, add it to the list—at my left elbow with a huge needle to get the ten percent of blood that he needed but it rolled off the vein. Another painful stab at the right and I was pouring blood down the line. Ah, good times… He wisely didn’t talk about how large that needle is compared with others until after he had removed it, but they are apparently about as thick as needles get. I had two brief spells of dizziness but then we were up and away, as we had to drive over an hour to get back to Tugun near the New South Wales border. Dylan blessedly fell straight back to sleep on the drive, even though he had had adequate sleep and had only awoken not that long before. Chloe brought us all another cold recently and it has our whooping cough flared up something fierce, which is probably why he was as wrecked then as Jennifer had been on the drive up.

On the drive down I started to get a cold sore on my lip—something I’ve not had in a long, long time. Jennifer can’t recall my ever having had one. Shortly after that I started to get one on my nose. Now, this is something I had once when I was about twenty, so talking about a long time… Apparently, having that blood removed has a certain side effect—at least as far as cold sores go. Damn.

The initial session preparing for radiation went well. Everyone we met in the staff was great. They were squeezing us in to the schedule, given our predicted inability to arrive on time, they did so happily and rapidly. A net mask was made over my face, a CAT scan (the only one I’ve ever had previously I don’t recall because it was when I was unconscious after my Grande mal), a conversation and we were out. Dr. Mirakian looked a little pained when I mentioned that we had been suggested (by David Hollingworth) to start radiation after blood work starts, but agreed as long as we didn’t delay for that four weeks. We should have the dendritic cell vaccine ready to start in a couple weeks. (Sorry, mate. You’re a good sport.)

We then returned home with me hungry, crabby from the outbreaks on my face, tired from loss of blood, and with a painfully sore back. After I had lunch I went and had a nap that lasted all afternoon. When I woke up our lovely new cook, Tara, gave me a massage that perked me up considerably.

And here I am. But not for long. It’s past midnight now and I’m re-wrecked. But I got this journal entry written after too long with none.

Good night.

Posted by Peter at May 4, 2005 01:13 AM

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