So, how do I feel?

How do I feel?

Two and a bit years into my multiple myeloma, it’s probably time to sum up how I am feeling.  For starters, I am feeling indescribably grateful to the people at Cancer Care of WNC and Wake Forest Baptist Health for fixing me.  And to Susan for putting up with my flaky, forgetful behavior and for driving endless miles up and down I-40 to Wake Forest.  Not to mention Sam for his patience in hearing for the nth time “No, I really don’t fancy going to the soccer field” and for dragging me out to the soccer field anyway.  End of Oscars speech coming up.  Above all, my thanks to President Obama for making this so financially survivable for us – my meds cost $13,800 a month and, were it not for him, I would have had to make the choice between bankruptcy and dying.  

But how do I feel physically and mentally?  

Let’s start with mentally.  When all this started in early 2017 or thereabouts, I was constantly asked if I had had any thoughts of harming myself or others.  I’d always reply that, other than my former boss at Carolina Day, I really had no desire for anyone to come to any harm (I’ve added a number of politicians since but I don't think I am alone there).  I’ve been very careful not to do anything risky and have particularly avoided ladders beyond 3 or 4 rungs as my sense of balance and vertical distance perception have suffered.  They’d ask me at Cancer Care if I had fallen since my last visit and I did contrive to take a couple of dives for their benefit, both being very minor and entirely down to my own stupidity (standing on one foot on a slippery oak log, for example).  I haven’t gone sky diving, white water rafting, pearl diving or anything else even remotely self-destructive.  I did test my bike helmet at Biltmore, though, and I have no idea how (on the gravel path down from the house to the lake – maybe a 20 degree slope.)

I haven’t fretted at all about what I’ve got – nobody seems to know what causes it beyond knowing that New Zealand and the USA are the two countries in the world where you are most likely to get it.  And I’m certainly not prepared to say “If only I hadn’t gone to live there.”

I’ve had a few sleepless, or at least substandard nights (including last night – I’ve been awake since 3:15 and up since 5:15), mostly when I was taking handfuls of steroids (prescribed to counteract the other stuff I was taking).  I soldiered on bravely, scoring multiple bollockings from my boss at Carolina Day – a tip for you: if you feel like crap, take the day off work.  Nobody appreciates your feeble effort to man it out.  Those bollockings really got to me – they were more depressing than the illness by far. 

I was warned about some of the mental effects the drugs in particular may have – a loss of memory and loss of intelligence among them.  I like doing mathematical and logic puzzles and still have the remnants of a “Black Belt Kenken” book I took into hospital with me when I had my transplant. 

Those puzzles are hard at the best of times.  The top left puzzle is one I did in the waiting room, the other 3 are ones I "did" during my treatment.  Even more spectacularly, the "6" filled in in the top right puzzle is actually wrong.  I can now do them again with the same success rate as previously.

My memory is a different matter.  I really wanted to write a long “Thank you” note to the people at Wake Forest but when it came to it, I could remember only two names out of the dozen or so people who looked after me 24 hours a day.  Addressing them as “Opera Lady”, “Big Bloke” and “Groupie”, among others, really didn’t seem appropriate.  

We still watch Jeopardy most evenings and Susan & Sam wipe the floor with me.  While they are merrily blurting out the answers, I’m still groping for the name of the tall guy with the grey hair.  I can remember the names of all the faculty at school but most of the students’ names are either long gone or have to be dredged from a dark recess of my brain.  I can still remember my phone extension from the job I had straight after university and similar useless crap.

I can’t remember music like I used to and even got kicked out of a band because I couldn’t remember odd key changes or breaks in a load of songs I’d never heard.  Suits me – the guy playing the wee keyboard couldn’t play it to save his life either.

Did I ever mention that I hate the American system of weights and measures?  Now that the household is reduced to just Susan and me most of the time, I have to cut down the ingredients in recipes.  So a “Serves 6” recipe has to be divided by 3.  What the hell is a third of a quarter of a cup?  (Yes, I know it’s a twelfth of a cup – I’m not that stupid) but what is a twelfth of a cup?  Why the hell can’t recipes be in millilitres and grammes?  So when I cook from a recipe now, the measures become “a dollop”, “a lump” or just plain “some”.  Near enough.

They warned me about potential for irritability (see previous paragraph)– I don’t think I suffer from that any more than I did previously.  I am likely to use foul language when I hear about Trump and his clan of nasties but I think that is normal and justifiable.  I don’t get pissed off with waiters or when things don’t work first time and, on rare occasions when I do find myself getting frustrated, I have enough common sense to stop.

So there’s my mental state in a nutshell.

My physical state

I’ve been keeping a bit fit at home, as per doctor’s orders, by walking, biking (when the weather is cooler) and building a utility room in a storeroom in the basement.  I’ve reached a stopping point on the utility room as I can’t do anything until the plumber has rerun pipes, installed taps and drains and similar stuff.  So today I got my exercise walking round Lowes and buying a few odds and sods for putting up sheetrock (which I still call Gibboard to everyone’s confusion).  Never done much of that so it’ll be an education. [Stop press - having carted around a sheet of sheetrock, me and my dud right wrist have decided to let someone else put up the 15 or so sheets that the job involves.]

Now before I get to describing my physical state compared with what it was like two and a bit years ago, please bear in mind that I am just about on the right side of 70 so some creakiness is only to be expected.

I have registered for a renewal of my soccer reffing license.  I’m going to ask the game assignor to be nice to me for a few weeks so I can see what kind of mental and physical shape I’m in.  Yes – mental: last time I went out to ref 18 months ago I kept forgetting which team was playing in which direction and made one particularly wrong decision that I am sure a team from Charlotte burns me in effigy before each practice.

I don’t get exhausted any more – no more trotting off to bed at 8 p.m. or falling asleep in front of the goggle box (though the Civilizations series can have that effect on all of us – where do they find these people to read the commentaries?)  I guzzle glutamine to ward off neuropathy – dead nerves and pins and needles.  The drugs cause the neuropathy, not the myeloma.  So far so good though I have permanent minor pins & needles in the fingers of my left hand and my right foot always feels like I’ve got a train ticket in my sock.  Multiple myeloma is supposed to cause bone pain and I’m doing OK on that front.  My right hip hurts until I get up and move around (I put that down to years of playing rugby) and my right wrist and forefinger hurt a bit which I am blaming on all the hammering and lugging around of lumber I’ve done in the basement.  I can run reasonably well – I don’t run for pleasure and never will but do run around a bit when playing and reffing soccer.  I can also swim better than I have for years, largely down to the amount of time I spent in the sea when I was in NZ.

I’ve also just heard from Toshiba that they have fixed my real laptop and that it should be shipped back to me “soon” – with luck, that means I should get it Monday or Tuesday next week.  [Stop press - they just emailed to say there will be a short delay as they have had to order some special parts - with luck, they've got something that stops the touchpad turning itself off and that stops the cursor jumping all over the place (which explains some of the random words that appear in these posts.)  So I will once more be able to edit my blog, maybe, unless I have managed to change the unknown password for the unknown username with which I have been keeping it.  Serves me right – I must try to switch it to a name I can remember. [Final stop press - blogger decided to let me log in this morning so the urgency for my own laptop back has once again decreased.]