I'll start the post with the usual, sorry I haven't posted in ages. But to be truthful, I haven't exactly had much material, what with mum, Charlotte and dad posting all the time. But I have some news this time, and since I'm here, I might as well do a quick re-cap of recent events.
OK, so after all the make-a-wish, and besides the broken leg, my chemo was going great. The tumors were showing signs of shrinking, and I was more then happy to go for a couple of years on this drug.
until..... three and a half weeks ago I developed a headache. I'm no stranger to random headaches, so at first it was a case of, drink plenty of fluids (in case it is dehydration) and a couple of panadol (because why not). The next day it came back, still more annoying then painful. But by Monday it was getting serious, and I had woken up that morning vomiting and light-sensitive, this set alarm bells ringing. So off to emergency, where we spent the rest of that day, getting nowhere with the medical system, and generally feeling like shite. Eventually at around 6 they finally moved me to the now familiar ward 25, where I was met by a lovely lady doctor with a large needle (not a euphemism) which she then proceeded to shove into my spine. I must admit that it wasn't as bad as I had expected, and they she was very competent. Still it's not the sort of thing you feel like after a long day, and for some reason I didn't have much of an appetite afterwards (if I had known what was to come, I would have forced myself to eat then). And so for the next 7 days, we sat, mostly in the dark, I ate very little, and what I did manage to get down, often came back up a few hours later. We also got very little sleep, partly attributed to midnight pain meds, and the subsequent vomiting. partly the fact that neither me nor mum could manage to sleep even when we had the opportunity, leaving us both tired in the morning. Other then another spinal tap on the Friday, the days were fairly uniform, we would wait in the dark for results. And the doctors to figure out what was wrong, give me a pill, and send me home. That was until Wednesday, when I took a turn for the worst, having what appeared at first glance to be a stroke. I had been headed for the bathroom across the corridor, when I lost feeling in the right side of my body. This scared the daylights out of my family, with dad, Brad and Charlotte all rushing up to the hospital from their various works. This was a weird day for me, and despite all expectations I remember it all vividly. I can't say I felt scared during it all, more confused, and frustrated that my limbs were rebelling against me. The next day however, I felt fine, thanks to a HUGE dose of steroids. In fact, all my earlier symptoms (headaches, vomiting, light-sensitivity) had all gone as well. This last episode, and the results of the second spinal tap, which finally arrived, allowed the fabulous (although we did doubt his brilliance for a little while during that long stay) Dr Jameson to finally diagnose me with Lymphomatous Meningitis, Which is basically meningitis caused by lymphoma cells. Meaning the lymphoma is in the fluid around my brain and in my spine (pretty certain its the same fluid, but cant be sure). And unfortunately, the drug I was on (Vinblastine) doesn't go that deep. So off that! But that left us without an obvious plan, because, with the cells in the spine, it becomes a whole different ball game. So off go emails to the states and Auckland, to see if they have any ideas. But while that was happening, we had no need to be in hospital, so on Thursday evening we finally escaped, after 11 days of hospital. We were expecting a full week, until next Friday, and other then a headache the day after we get out (which Micheal sorted with a large 10 pills of steroids (we were supposed to be on 2 a day)) we were looking forward to it. But not two days in on the Saturday, we get an call saying we were going to have to come back in on the Monday for a dose of Methotrixate (one of my original chemo drugs) and the subsequent days of the antidote, folinic acid. All up this takes about 4-5 days, so effectively taking up our free week. Everything went as planned, although when we arrived on the Monday, we were scheduled for a CT scan, which no one had thought to tell us the time of. luckily we arrived in the car-park just as I was supposed to drink my first contrast, meaning we were only a little bit late, and I easily caught up with the drinks. I was also supposed to have a bone-marrow biopsy, where they drill into my bone and take some marrow, but I refused unless they knocked me out. Micheal was all for it, but was unable to organise an anesthetist and a theater room together, in-time, so he just decided to do without. With massive skill, we managed to get my Methotrexate
I even managed to get out and have an adventure day yesterday, out at a place called Off road NZ, where me, mum, dad, and rosemary went on a bus safari, did some archery, and shot clay pigeons. We had the best of time.
|Mum and Rose going through "roll me over"|
|The crazy drop know as "The Luge (parachutes for hire)"|
Today we had another appointment With Micheal Jameson, that had been planned for many weeks, even before I got sick. We had a X-ray scheduled for 2:15, which the hospital system managed to lose, putting us a little behind schedule for our 2:45 appointment. But the wait was worth it, Because the X-ray showed reduction of the few nodules they had noted in my lungs. Also we got some good news, a few weeks ago, me and my sister Charlotte had blood taken for a tissue typing, which checks to see, that if i need a transplant (which I do), whether Charlotte could be a donor. The brilliant thing is that she offered, before they asked. I love my sister. But anyway we got the first yes a few days ago, so she was half way there. And today when we were talking with Dr Jameson he mentioned that he had got an email from the guy doing the test. Drum roll please............ AND WE ARE A MATCH!!!!!! So as far as I can tell, my sister will be donating the stem-cells that have the best chance to be accepted, since she is only full blooded sibling. So fingers crossed that when I do finally go for a transplant, all will go according to plan. Speaking of plans, our plan for the next couple of days is the same as it has been for most of the week, relax, rest and make the most of being home. We head up to Auckland on Monday to meet the people at Star-ship to get all the details about transplants and that sort of thing. To tell the truth I think it's simply a meet and greet.
But I think that brings us completely up to date. Can't think of anything else so guess I'll wrap things up. Feel free to visit if you want, visitors are always welcome.
Finally, as always, Be good and stay healthy.