Will you still love me to-marrow - John Mycroft and Multiple Myeloma

Enough of the big Smoke of Auckland - yesterday I packed up most of my goods and chattels and took a slow leisurely drive to daughter Georgia's house in Waihi.  We have a few odd jobs lined up to keep me busy while I'm here, starting with building a low retaining wall and removing a chunk of chain link fence.  The local council is offering grants of up to $300 for roadside improvement projects such as this and she hopes to get some cash from that.  Nothing like hefting lumps of 150x50 timber around to get the circulation going.  Needless to say, this activity will be followed by falling into the Pacific at Waihi Beach.  The water there is a bit cooler than Orewa but I think I will survive without wet suit. Georgia and I celebrated New Year's Eve last night with a barbecue (actually steamed food) at a house she used to own on the edge of Waihi.  A very nice group of people there, only one of whom insisted on talking about Trump (he was pissed so I'll let ...

Tut tut - 3 weeks since I updated my blog.  Put it down to bone idleness or the blazing New Zealand sun which makes it impossible to see a screen outdoors (including the one on my camera which has led to many interesting shots.  Talking of camera, I think it has either developed (pun not intended) a hair trigger or a minor fault or I have developed even more clumsiness as it keeps doing things I don't really want it to do. So, how have  I been busying myself?  Susan & Sam arrived a couple of weeks ago and are getting ready to fly back to the snow.  We've done most of the tourist sites of Auckland, sploshed in the South Pacific (we're on the east coast - only I have braved the Tasman which they tell me is unusually warm but I must have skipped that day) and socialized mightily with our 5 wonderful grandkids. [Note to self - blogger is being a bit uncooperative at the moment so I must add pictures later]. Susan & Sam arrived a day late courtesy of Ame...

My wheels at Leigh (thanks, George) It's been an absolute social whirl this week mixed in with a couple of idle days.  On Thursday the weather turned very windy so it was time to venture northwards to Leigh and Goat Island to check out the snorkeling but with no intention of getting in the water.  They were quite surprised to see me at the snorkel shop and were very quick to point out that I'd be wasting my money going snorkeling as visibility was pretty grim.  I explained I was only checking them out  anyway so that was no problem.  I'd abandoned the GPS many miles before getting to Goat Island as it kept giving me bizarre instructions, some of which I followed, some of which I knew instinctively were crap.  Later examination of the GPS revealed that I had selected the wrong town and it was trying to take me to the South Island.  Still, I did see some parts of rural New Zealand I'd never seen before.  I have still yet to see a sheep, th...

Today brought a mixed bag of things to do.  I was a bit groggy when I got up at 6 this morning - it took me until nearly 8 to be ready to roll, not that I needed to have bothered as nowhere I intended to go opened until 9.  And so at 9:30 on the dot I parked outside New World supermarket where I planned to shop later.  First job was to try to open a bank account with the Auckland Savings Bank.  The lady there couldn't have been more helpful and even found the account I had opened in 1989 and said it might be easiest to reactivate that.  OK, provided you don't want 14 years of fees for doing so.  Neat way of proving my address was that she wrote me a letter and mailed it and told me to bring it in when I got it.  OK. Next job was to find the place we're staying over Christmas - as it fronts onto Orewa Beach that was dead easy.  Except I couldn't find it - having the address would have helped.  But I did get to walk the entire length of Orewa ...

The third night in New Zealand is always a killer - you're over your ability  to sleep from sheer exhaustion but your body hasn't adjusted to the fact that, in NC terms, you are going to bed at 4 a.m. and want to sleep til midday.  But last night was a completely normal night's sleep. So time to get busy. I got up finally at 6:30 to be greeted by Murph demanding another walk on "Red Sand Beach".  The tide was right in so our usual route down the slipway at the surf club ran the risk of possibly getting our tootsies wet.  Shock, horror and no way - Murph chose to clamber over the granite boulders rather than risk it.  By the time we had walked to the end of the beach, he was in, shoes and all, up to his backside. After breakfast, we all went the other way to jump off the rocks (about a 4' jump into 5' of water - not quite the cliffs at Acapulco.)  Somewhere along the way I managed to step on an oyster shell so there's probably a shark out ther...

My Mum would be horrified to know that I arrived here Thursday morning and took until Saturday morning to dive into the sea.  I'd describe the temperature as "not at all bad", about halfway between Cape Cod and Murrells Inlet.  It seems to be seaweed season, though, possibly due to yesterday's high winds.  I was up early again and, being civic minded, took an empty supermarket. bag down to Red Beach to pick up any litter and crap brought in by the tide.  Having walked the entire length of the beach, I brought an empty shopping bag back with me. Nonie, Murphy, Mack & Cassie stayed the night last night, camped out in the living room and on the deck.  Only Murphy was awake when I went for a walk so I took him with me.  Still no sign of  severe jetlag in my sleeping hours yet but tonight is the dread third night.  I have a fairly short list of things I have to do which is fortunate as the only  one I have done is "Buy food".  On Monday ...

What better way to start my retirement than a trip back home to New Zealand.  The journey was its usual less than fun ordeal featuring a van ride rather than a puddle jumper from Asheville to Charlotte due to "equipment failure" in two PSA planes, a bloody uncomfortable flight from Charlotte to LA in a plane equipped for midgets and a more than decent flight from LA to Auckland. It took quite a bit longer to get out of the airport than it has previously - I had some muddy shoes with me which I decided to declare to the Min of Ag - the inspector took one look and said I was OK but it had taken me 20 minutes to get through the queue.  It would appear that these little darlings are here, too. Georgia gave me a quick guided tour of all the new chunks of motorway that have gone in here.  Pretty impressive - I'd imagine that the committee meetings aren't as many as they are in the US.  After a gargantuan late breakfast / early lunch mostly consisting of bacon & egg ...

Final visit to Wake Forest cancer centre before heading to NZ - they have planned a full day for me.  I got here nearly an hour early and have had an armful of blood sucked out of me pretty promptly.  The rest of my appointments are more precisely scheduled, though, so I think I am destined to sit here for a while. I was surprised when we went to Farm Bureau insurance yesterday, expecting simply to sign some forms - they actually handed us a check for the damage to my car and, if all goes to plan with my man in Swannanoa, I should once again have my trusty Subaru back in more or l ess one piece, albeit as a "salvaged vehicle". I am going to leave the damaged bit in its damaged state so whoever gets it in the future will know what state it was in.  For this they write off a car?  No wonder the world's running out of resources. Good news here at Wake Forest - not only do all my usual numbers look good but I now have "no detectable m-spike" which is really g...

Today is the first real day of my retirement.  Susan and I had a terrific weekend around Asheville, cooking at home, eating out, classical concert Saturday night etc but today was my day to be a gentleman of leisure. Starting with a lie in until shortly after 11, I breakfasted in my slippers and pyjamas on the deck - smoked salmon on Vogel bread, café latte, champagne & orange juice while Carson read the more interesting parts of the New York Times to me.  And then back to bed for a nap. No - hang on.  Not quite like that. I woke up at 4:30 and, as I didn't need a pee, I figured that was probably it for the night.  I buried myself under the duvet until 5:20 when I did need a pee and crept off so as not to wake Susan.  She got up shortly thereafter and headed downstairs to exercise.  Breakfast was homemade granola (by Susan, not by me) and two giant cups of regler coffee, accompanied by the Asheville Citizen-Times which just happened to have one...

I had five great years working at Carolina Day School - two highly supportive and helpful principals (Tinnie Salzano and Ben Topham) and a brilliant mentor (Joanne Bartsch) who answered all my idiot questions about Moodle and ordering textbooks with nary a sigh or rolled eyes.  Not to mention Bill Wolfe who let me "borrow" endless tools, supplies and anything I could get my hands on, knowing full well he'd probably never see them again.  Which takes us up to 2014. Today I retired and, quite honestly, not a day too soon.  My rather precipitate retirement was 100% my idea (with a lot of consultation from my wonderful wife, Susan.)  The robotics class has an instant replacement who knows more about it than I do.  Don't know what's happening about programming.  Shouldn't be hard to find someone with my limited programming experience for $11,000 a year - not my problem. Main task for my classes to day was the demolition of 3 dozen doughnuts and 3 dozen cans ...

Time for a change.  I am feeling much better than I did a year ago, especially as I no longer get the crazy sleep and eating habits from having to take steroids.  Now, I took a lot of grief in my job from my boss which the cancer diagnosis seemed to have calmed down.  But I can't play the sympathy card forever, especially as I look the picture of average health.  So, as of this coming Friday, I am retiring.  I have an idea for a rather nasty sci-fi novel: it could be taken as an allegory of current events but it's not meant that way. Most of all I want to take some time to do some energetic nothing.  Nothing that can get me in trouble (beyond hitting myself on the finger with a hammer - I now have full feeling back in my left index fnger: thanks for asking) but not sitting in a rocking chair watching the cars drive up Avondale Road, either.  Talking of rocking chairs two questions spring to mind.  First, why doesn't anyone make a rocking chair wi...

Yesterday, Susan drove me to Wake Forest for another checkup and a load of shots.  (She drove because I have managed to catch an evil cold which has rendered me more moronic than usual.)  On the way there and back, we both developed a deep loathing for people driving large pickups which seem to come with a "road ownership certificate".  I got about 2 hours sleep last night, crumbling into bed and going to sleep almost instantly but waking up at 12:30 a.m. convinced that was all the sleep I needed.  I beg to differ. Anyway, I have a comparatively busy day at school today.  I suspect some of the robotics class will need a hand getting some of their monsters operational while I want to start working with the programming class on making their programs idiot-proof (I wonder if I am allowed to use that term). My upper arms hurt from the barrage of 8 shots I had yesterday (the nurses work in pairs, shoving their needles in at the same time from opposite sides which ge...

I'm now on maintenance with Revlimid - a mere 10 mg a day for 3 weeks and then a week off (am I repeating myself?  Dunno - memory's not what it used to be.)  I am reliably informed that I can have a beer or two as well as some non-alcoholic Clausthaler.  Considering Clausthaler's healthy ingredients like malt, it probably qualifies as a health food.  Anyway, this is my week off and I am making the most of it as I certainly feel better when not guzzling even the small Revlimid torpedoes. Susan & I drove to High Point over the weekend (I drove there and didn't doze off once though the lane wandering warning in her new car did talk to me a few times) for parents' weekend at the university.  Sam has joined the improv group, Charcoal Pony, and they have taken him onboard as if they've known him for years. I'm getting plenty of enjoyable exercise - reffed 3 soccer games last weekend including a women's game which was a hoot: they all knew each other and ...

And now I have a week of taking nothing for my cancer.  I'd hoped that would get rid of this dopey feeling but I suspect that the dopey feeling is attributable to the cold that Susan & I have got.  Durr.  Anyhoo, tthings are progressing well and I do indeed have a whole 7 days when I don't take anything followed by a reduction from 25 mg a day to 10 mg a day.  And no more intravenous stuff, either. I celebrated today by getting up a ladder (not very far) for the first time in over a year, mostly to remove a few cobwebs from the living room ceiling.  It's 18' high and the bloody spiders had built their webs right at the top.  Sods. At least we haven't been affected by Hurricane Harvey though I do have to wonder how many more of those we have to go through before some of our idiots in Washington concede that there may some climate change going on.  I was going to play my guitar this afternoon but managed to scald my left hand at lunchtime (interest...

Yesterday I turned up at Cancer Care to get a dose of chemo and was told, much to my puzzlement but eventual delight, that I wasn't going to get one.  I am done with that stuff.  And, once I have finished my 25mg Revlimid capsules, I will be going on to a 10mg dose.  Brilliant!  I don't know if I still need to keep taking my fortnightly steroids - I sincerely hope not.  Presumably I will find out more when I see Dr M next Friday.

Susan & I spent the day pottering around variously waiting for the eclipse.  Everyone has made such a ginormous hoohah over it that we decided to watch from home and a good time was had by both, even getting a bit of exercise lugging comfy chairs out to the front stoup to watch the world go dark.  Yesterday I plucked up the courage to ref 3 games in the local tournament - I wasn't sure how running up and down in typical Asheville heat was going to agree with me but I cunningly managed to take to the sideline on the shady side of the field for the first 2 games.  The third (and final) game I paid for my sins by taking the centre spot in direct sun but survived anyway.  Alas, I did make one ghastly mistake which gave a team a goal that they shouldn't have been awarded.  Even worse, their coach was nice about it which made me feel really bad.  To be fair to me, the team that got the unfair goal deserved to win anyway (it was a draw).  I think I will s...

Ignore my previous post - my brother Bob doesn't have cancer after all.  Best bit of news I've had all year.  So to celebrate I am on my way to Vancouver to spend a few days with him and his family.  I will try not to destroy my foot on his fold out bed (again).

Previous rounds of chemo have been largely non-events for me - no nausea, slight side effects around the gut and brain but not much of a big deal.  This has changed with my new infusion of carfilzomib.  I'm taking it along with Revlimid and it has some odd effects.  For starters, it makes me progressively more dopy as the infusion - which takes half an hour - progresses.  It feels, I imagine, a bit like being executed slowly as I gradually lose the power to think.  I should probably stop driving myself home from the appointments.  It kills my appetite, too which is something I don't enjoy - no nausea but no hunger, either. It costs a bloody fortune and I am very grateful to Medicare for footing the bill.  (It would cost less had a previous US government not forbidden Medicare to negotiate prices with drug companies, an immensely incomprehensible idea.)  I suspect that it would not be available in New Zealand at all though I could be wrong.  ...

Bloody hell it was hot this weekend.  On Thursday and Friday I had a coupe of hefty doses of chemo along with some steroids with the inevitable result of a dud night's sleep on Thursday and not much better on Friday.  Then on Saturday we were off to High Point to check in with Sam at the Uni.  He's strutting around the place like a senior, knowing all the shortcuts between buildings and saying "See you in Slane" as if we have a clue what he's talking about. Susan to the rescue (again).  She drove all the way there on Friday and all the way back on Saturday.  Not that it's overly far - about two and a half hours - but it's a pretty boring drive for the most part.  The temperature reached 99 degrees on the way home so we were grateful for aircon in the car.  I don't know if it was the chemical brew or the heat and humidity but something left me feeling pretty washed out by Saturday night.  It's now Sunday and I've got a new pastime to keep me bu...

Today is the no particular anniversary of my blog so, to refresh my memory and to save those looking at the blog for the first time, I'm going to use my highly faulty memory to summarise the last 18 months or so. When my MM fist started developing, nobody can tell.  It was about 3 years ago when the Red Cross told me they didn't want my blood because it wasn't rich enough.  So off to the doc to have blood tests done which showed I was, indeed, low on hemoglobin.  I was told to bugger off and buy some vitamin pills which didn't do anything for my chances of giving blood. The I started getting all kinds of grief from my boss at school, usually in the form of kangaroo courts where she and her boss had decided that something I'd done (getting air conditioning fixed, making one period a week a question and answer session and so on) was unprofessional.  Eventually they kicked me out of the math department having conveniently hired a younger guy who took my place.  S...

Had a few scheduling problems this week.  I am supposed to be getting chemo intravenously every Thursday & Friday, 2 weeks on and 2 weeks off.  At the same time, I take a big dose of Revlemid every day for 3 weeks then have a week off and take a small dose of steroids every other Monday.  (I'm hoping the steroids won't give me sleepless nights).  As you can imagine, it took a few goes to get the teeth of those cogs meshed but I think we are now in business.  Oddly enough, my steroids (of which I take 5 at a time) had 33 pills in the pot.  Anyone want to buy 3 steroid pills (please note - that is a joke: I've already given them to Bill Nighey). Upshot of this was that I arrived at Cancer Care on Thursday for my infusion only to be told that my appointment is next week.  Not being prepared to waste a nice day, I shot home, stuck some air in my bike's tyres and took off to Biltmore, well aware that I am not as fit as I have been and with there being ...

Back at Cancer Care in what I suspect must be one of the cheap rooms - no nice view of downtown or the Blue Ridge Mountains here, just a blank wall with a couple of sinks in front of it.  My companion (fellow patient) has tuned her TV to what sounds like Jerry Springer - Lite and gone to sleep.  Or I assume she's asleep - she's now stopped snoring.  I could be here for 4 hours as they have to hydrate me (I'm halfway through the bag) then fill me with a bag of drugs and hydrate me again.  Laptop battery will be well dead by then but I have a book.  I haven't managed to find out what drugs I should be taking and when and when my next appointment is or anything vaguely useful but hope I can get all that sorted before I leave.

OK - that was s short stint back on chemo.  I don't know if it was the chemo or something I ate or drink but something gave me pretty good diarrhea.  So, considering the cost of the chemo capsules, I called Cancer Care and said "Should I stop taking it?"  (and stopped taking it anyway).  Back came the answer "Yes."  A couple of days living on hard-boiled eggs (in addition to the local delicacies) soon had me back to what passes for normal.  Incidentally, although the diarrhea got into its stride in Italy, it was either Germany or Austria that started it.  Can't trust anyone these days. So now we are back in Asheville, I have paid a visit to Wake Forest and to my local Cancer Care and we are all ready to get going again.  Not 100% sure what the new scheme of things is going to be but I have a pretty good idea. Starting tomorrow, I will be taking 25mg of Revlimid (or 10 mg - have to sort that out tomorrow) every day for 2 weeks and then have 2 wee...

Yesterday saw me restarting chemo - this time a 60% reduction in the chemo meds and half the steroids.  The intravenous bit starts next month and, it being school hols, I just might take myself off to Cornerstone for brekky afterwards.  So I trotted off to bed at 9:30 full of confidence for a full night's sleep.  At 10 pm some dickhead phoned wanting to conduct a survey.  Susan being more nimble to the phone (which is on the other side of the room as the bedroom is still in its winter configuration) and told them only minorly impolitely that their timing was less than impeccable. I'm prepared to bet a buck that I didn't sleep a wink though I did definitely slow the brain down and came up with some good ideas for the programming and robotics classes next year.  And, in the cold light of day, they do appear to be good ideas.  It's now 2:30 pm, I've been up 8 hours and feel fine but I think I must insist on my choice of TV watching tonight as I am likely to c...

(I wrote this last week but forgot to publish it). We've reached the part of the school year where the three lower classes engage in "intensives" while the seniors get ready to graduate.  For Sam that consisted of going to Dollywood yesterday - despite the peeing rain and a touch of lightning a good time was had by all.  The lousy weather also kept the faint-hearted at home so the queues for rides were shorter. I spent much of yesterday fighting with Quickbooks - we have two kosher licensed copies at home for two different organisations and on different computers.  In the grand re-install of Windows 10 on Susan's computer last month I had installed the wrong version of Quickbooks and clicked the "OK" button when it asked if I wanted to update her database to the correct Quickbooks version.  There being no illegal or unlicensed software in this house, we needed to get back to Quickbooks 2012 and the links on Intuit's website to download 2012 oddly enoug...

Heart in mouth time as Susan & I headed for Cancer Care for my post-transplant check-in with my guy, Dr. M.  Poor guy is going through hell with the new computer system they have inflicted on them and I took only the tiniest bit of pleasure from knowing that Mission Hospital had turned down my application to take part in the development of it.  (To be fair to Mission, I was probably the least qualified candidate they had - any 21 year old coming out of college with a computer science degree would probably have had a better background than I have.  But I digress.) Dr. M. told us that the transplant had largely been a success with my M-Spike taking a dive from .78 down to .2 - 0 is ideal but .2 is pretty darn good.  I'm also feeling great. They took an armful of blood and all the numbers in it, except for my white blood cells are right where they need to be, especially the hemoglobin which is probably why I can manage 5 or 6 miles up and down Cornelius Vanderbilt'...

Today was the last day of classes at school.  Most of the kids shook hands and thanked me which was nice.  I've even got a manageable mess left behind by the robotics class.  I somewhat fortunately have about half a dozen empty - or easily emptied - cantilever toolboxes that I use for storing parts.  The class already sorted out the parts needed by next year's class to make the first couple of weeks of projects (I'm changing what they do next year - still start with the Clawbot but get them into programming it earlier rather than keeping it as little more than a glorified RC car). The programming class are at varying stages of "nearly complete" with their Minesweeper programs.  If nothing else, they will have come out of the course appreciating that even a fairly simple looking game like Minesweeper has a lot of work behind it. I've been getting out reffing soccer - I've had my first two adult games amid warnings of obnoxious behaviour from the players (...

Finally contacted Wake Forest yesterday to say "Oi!  How long before I snuff it, then?"  The answer was, to put it mildly, quite encouraging.  It turns out that the gizmo they use to measure the protein causing the M-spike (yes, it's gobbledegook that I don't really understand either but bear with me) can't measure anything below 0.2 accurately.  So if its value is anywhere between 0 and 0.2 (but not 0), it gives a value of 0.2.  So I am doing pretty well but not perfectly.  Hence the need for more chemo. I've also been given the all clear to help clean up the drama department storage shed at school which means I must have decent resistance to nasty stuff.  I will refrain from asking why it is that the school can provide storage space for all the basketball gear you can imagine but that the drama department has to make do with a disused garage a quarter of a mile from the gym in which plays are put on.  But I digress. Peed with rain all last nig...

Having bought all that gardening stuff last week, what was the obvious thing to do at the weekend?  Yup - go out and buy some more.  So off we went to Lowes for some azaleas, a white rhododendron and a ton of topsoil.  Then, as I am not allowed to play in the dirt, we cracked the whip over poor Sam to get him to cart a ton of complost from the compost heap to go with the ton of topsoil. Meanwhile I put on a mask and gloves and spread lime all over the place to get our acid soil into neutral territory with a bit of luck.  So our lawn looks like a cocaine truck has had a nasty accident on it. Tomorrow is my last day with the help of a sub at school - Chris has done a brilliant job and I've only got to keep these guys gainfully engaged for the next 3 or 4 weeks: the seniors will be checking out earlier than that.  The robotics class are working on a robot of their choosing (we have a selection of robots that throw empty soda cans, fire rubber bands, play loud mus...

... Don't do any gardening, they said. Okey doke.  Sounds fair to me.  So on Wednesday, after my two classes at school, I headed to Lowes to buy some storage boxes for my robotics bits (the cardboard boxes they were shipped to me in are less than serviceable and mostly long gone) and a couple of bags of lime for the lawn.  I am supposed to refrain from digging in the dirt to avoid the mould and microbes that live there so I reckoned spreading some lime would be OK.  And what greeted me as I arrived?  A heap of 24 split bags of sundry gardening supplies - landscaping pebbles, fertiliser and yes, lime.  Marked down from $245 to $15 and all piled on a palette wrapped in saran wrap. Never could ignore a bargain, especially as I was going to buy gravel and lime later in the year anyway, so I bought it.  Which left me the unenviable task of loading it into the Subaru.  And, even more fun, unloading it when I got home.  Only then did I think "And w...

So much for the Day +100 optimism.  It turns out that my transplant wasn't entirely successful.  I still have this crap inside me although the rate at which it is spreading has decreased.  I am supposed to be showing a zero M-spike but all it has done is drop from 0.7 to 0.2.  No, I don't really know what that means other than that this bastard thing is going to get me sooner or later and probably sooner. I'll be going back on chemotherapy in the near future - a reduced dose compared to my previous one - and we can only hope that our lovely government doesn't defund Medicare in the meantime as this stuff isn't cheap. Meanwhile, I have spent the morning re-installing Windows 10 on Susan's computer after it developed all manner of idiotic behaviour.  I think I have managed to install everything essential and my paranoid multiple backups appear to have been unnecessary as all her documents, pictures, emails and music are all there.  There's no sign of M...

OK - this is it.  Day 100 (plus a few, courtesy of weekends, Easter and stuff).  So we've driven possibly one last time to Wake Forest Baptist Health cancer center to see what kind of shape I'm in.  I've looked at my num bres, of course, and they are all either right in the range they should be in or very close.  The only ones that stand out are my Kappa and Lambda free light chains - Lambda is OK but Kappa is still too high but way down on where it started (as in it started at 76 and is now down to 2.2 so I guess that's an improvement).  I don't get a lot of readings for these things as they involve collecting my urine for 24 hours and then having it analysed in the lab whereas the blood tests are analysed while-u-wait. I hope it's not a sign - the harp downstairs (or is it a piano?) - is playing "Morning Has Broken", my unfavourite hymn from school.  If all goes well today, I will be going back to school kinda unannounced over the next couple of day...