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

After getting settled in yesterday and saying goodbye for a couple of days to Susan, I thought this was going to be a doddle.  That is until about 5:30 pm when I ordered my dinner. I lay down on the bed to read and started to shiver, not that I was cold.  And then shake.  And then look like I was having my own personal earthquake.  OK, I didn't get a crash cart but I got pretty much every other piece of equipment in the place.  And my dinner arrived in the middle of it - the guy who delivered it placed it on my table most nonchalantly and wandered off which, oddly enough, reassured me greatly.  My temperature went up to 102.2 but they soon got that back to near normal and hooked me up to a bag of something to keep me going all night. I slept well, waking several times but not uncomfortable.  I finally decided to stay conscious at about 6:30 which was a good thing as they had decided pretty much the same.  A long hot shower made the world a better...

Not feeling overly great today.  Had a broken night's sleep - nothing nasty, just waking up a lot.  My one complaint about SECU House (which I feel really bad about making) is that someone decided that floodlighting the building was a good idea - doesn't really go with slatted blinds in the windows.  If I stay there again, I will take a black tarp with me.  We packed up and were on the road to the hospital by 9:15 having been told that my 10 a.m. check-in time was only a suggestion.  We had to wait about half an hour before my room - 711 - was ready which wasn't too bad. Soon after moving in, an army of nurses (sorry for the generic term) came to visit to ask how I was and to listen to all kinds of bits of me.  They also got to take part in a Skype call from Sam which was good for a giggle. Since then, Susan and I have amused ourselves at other people's expense watching the local Highway Patrol pull drivers over on I-40 which runs a couple of hundred metr...

Up bright and early to get to the hospital for today's dose of saline and not much else.  Yesterday's chemo is starting to kick in - I can't do sudokos I could have done in my head a year ago.  I'm trying to persuade my guts into normal activity - no barfing but I am bunged up summat awful.  The ever-resourceful Susan has stocked me up with granola, prunes and canned peaches to get some action down there.  Even had prunes and peaches for lunch. Susan goes home tomorrow - I will miss her: even just sitting here in total silence has been really reassuring, not that I'm at all worried about what's happening.  She has to get back to work though her boss is being great about letting her rush off if she feels the need. Had a lovely yack with Nonx, Mack & Murph today via Skype - that's one of the 20th century's great inventions.  And now, dinner time which I suspect is lasagna (which, needless to say, makes me think of Flying High).

Cozily installed in room 705 for the transplant which should all be happening about an hour from now.  There's a picture of it somewhere here.  Marvin is front right - he comes everywhere with me.  The thing front left has been removed - above it is the TV with 60 channels, mostly showing adverts and snippets from Carrie Fisher movies (excluding the Blues Brothers for some odd reason).  Big brown door is the bathroom to which Marvin and I make frequent trips though he has trouble getting over the threshold.  Although it doesn't show in the photo unless you look really closely, I am hooked up to Marvin through the catheter in my chest (which they tell me I will have taken out about 10 days from now.)  Susan says the couch and the chair are pretty comfortable except that the wooden arms could do with some padding. I've got breakfast / lunch on its way - check out the menu.  Pretty much ordered the same as yesterday. Meanwhile I've got not much t...

It's the day before I get my transplant.  I've been here at the hospital in my own room since a bit before 8 o'clock this morning.  Everyone (even me) is hugely cheerful and there have been the usual electronic forms to sign, meds to be gone over (what gets taken when and why) and nagging at various levels of severity about what I have to do (exercise, munch on ice) and not do (overdo it).  The lunch from the hospital kitchen was debatably the best omelette I've had in ages and the yogurt parfait was pretty good, too.  Susan has bought me a pack of chocolate chip cookies - not sure how long I am supposed to make them last but they'll be lucky to make it until they kick me out at about 1:30. I've had my dose of really evil chemo as well as 5 pills to discourage me from barfing so I the only reason I am here is that I have to have the chemo washed into my veins by half a litre of saline.  There's about 100 ml to go - I have about the same amount of ice.  Som...

Back in Winston-Salem ready for the excitement of the next couple of months.  We checked in once more at SECU Family House  as we have an early start (7:45 a.m.) at the hospital tomorrow.  Finally I am starting to feel a little apprehensive though I doubt it will keep me awake.  Tonight was possibly my last chance for a couple of months to eat something inappropriate so, after a bit of discussion, we opted for TGIs where I could get a burger or a salad or something pretty basic washed down by a beer or two. Neither of our GPSs would direct us to TGIs but, wherever it is, we couldn't find it and weren't all that desperate to hunt it down, especially as we had driven past a place called BJs Brewhouse.  So I am now lying on the bed back at SECU House nursing a gutful of wings, ribs and some very fine beer.  Just what I needed and Susan's opinion was similarly glowing. And so to bed, ready to leap into action at 6 tomorrow morning to guzzle a handful of ...

I've spent the last few days feeling great, having finally washed the chemo out of my system.  My catheter is no longer uncomfortable unless I'm in the front passenger seat of the car and the driver brakes a bit hard.  I've been spending some time catching up on things I won't be able / allowed to do for a while.  It's hard to think that the half hour I just spent in the garden is my last bit of gardening for 6 months - that one is going to be hard to take, not that I'm a Percy Thrower (remember him?) but I can never resist planting one of these or hacking off a chunk of that. This morning, Susan and I put some previous gifts to good use - she'd bought me two pie pots which had managed to get stuck in the back of a cupboard.  I'm paranoid about making pastry as none of the recipes we have seem to match reality - "cut the butter into the flour until it is the consistency of dry breadcrumbs": it never is.  Susan let me on the secret which is to ...

It was pleasantly not very cold yesterday so I deserted my regime of stomping round Lowes for exercise and instead, took to parking at the far end of the parking lot everywhere I went (not that you get much choice at the mall at this time of year.)  It gives you a good short burst of exercise (that parking lot at Ingles Supermarket in Hendersonville Road is larger than many towns) and makes it easy to find your car when you've done whatever it was you came to do.  I can usually find my car anyway - I just look for what seems to be a gap between two honking great trucks and there she is. Yesterday's main excitement was having the dressing changed on my catheter.  This is more complicated than I thought.  First the old dressing gets peeled off - someone had generously shaved part of my chest last week so that was easy.  Then the accumulated gunk gets cleaned off with rubbing alcohol (yes, it stings).  Then the pipes get flashed with saline solution.  Th...

Once more feeling great and with a healthy appetite.  Over the weekend I have avoided the mall, got the Christmas tree up and decorated, cooked some high class burgers on the grill on Friday and, in general, been pretty normal. The house is looking and smelling Christmassy if only the weather would cooperate.  There is a gentle drizzle falling and there are few sub-freezing temperatures in the forecast for the coming week though, with a few hundred miles of driving in store over some pretty horrible roads (as interstates go) during the next two weeks, we'll probably appreciate something less than 4' snow drifts. Tomorrow I will head for the local hospital to have the dressing on my catheter changed - a very minor procedure I could probably do myself but it does give me a chance to pick up some pre-cooked junk food which I am not allowed to do after Dec 28th.  The only problem is that I don't fancy any beyond, perhaps, a lump of Ingles' fried chicken.

Get exercise, they said.  Walk, they said.  It's 21 degrees, I said.  No problem - I wanted to go to Lowes to get a ratchet screwdriver with T15 and small Allen bits (they didn't have any, even the 150 piece sets).  But Lowes is a wonderful place to walk around, partly because they have heaps of cool gear and partly because there aren't all that many people there to get in your way. I did get a couple of strange looks as I hit the end aisles for the 16th time but I'll live.  And to show my gratitude I bought a half price Christmas tree which I don't think quite lives up to the "freshly cut trees" sign's promise but it's a nice tree anyway.  Were I wearing a hat, I would raise it to the two brave souls working in the garden center today.  All they have for shelter is a small hut, barely large enough for one of them to be in at a time and with no discernible source of heat. Talking of raising my hat I have to remove it once more in the most sincere...

Done with school for the year, no chemo to guzzle or to have pumped into me and a detectable appetite back.  I even had a moderately normal night's sleep last night though I can live without waking up at 2:30 a.m. feeling like I'm in an oven.  So today was a mixture of the prescribed exercise (a bit of gardening while I am still allowed to) and a hefty dose of walking round the mall.  The trip to the mall was largely to equip Sam with a suit for his upcoming Caribbean cruise - I get to be filled with all kinds of nasty chemicals.  But at least I get to hang out in my jammies rather than putting on a suit. It would appear that male fashion this year dictates that men should go barefoot.  Couldn't find any men's shoes in either Belk or in Dillards.  Dillards is one of those bloody awful shops that puts signs on the wall saying "Norbert Krunge" rather than "Shoes" so we may have missed them.  We also bypassed the food court, preferring the more rela...

We'd got 2 stories about the stem cell collection yesterday - one was that I'd probably need only one collection while the other was that almost everyone needed two which means I would still be in W-S today.  So it was with some trepidation that Susan answered her phone yesterday.  But it was good news and we didn't let the door of SECU House hit our butts on the way out, unintentionally leaving 2 delicious meals in the freezer.  Nonetheless, we had an  uneventful drive home (Susan drove which was why it was uneventful) and got back to Asheville for dinner. We were both ready to crawl into bed after dinner but managed to stay up til about 9.  And, of course, I couldn't sleep - without going into graphic detail, blame my guts.  Still, Susan managed to get up at 5:30 to go to her school for a meeting at 6:30.  Sam and I took things a little more luxuriously and got to school at 8.  I had no intention of teaching, my head still being full of sawdust...

So here we are back in the waiting room where I am anticipating another injection followed by being hooked up for 6 hours to an apheresis machine.  OK - time has passed somewhat and I am now hooked up to it. I've included a picture but goodness knows where it will eventually get pasted as every time I type something it gets shunted down the page.   What's happening is that my blood is being pumped out of me by my own heart and shoved into this machine in which a centrifuge spins out the stem cells.  Then the leftovers get pumped back in.  I am informed that I am producing a decent number of stem cells which is good news because, if I'm not, I have to come back for a repeat performance tomorrow.  I'm lying in bed with a view over I-40 and the outskirts of Winston-Salem - not exactly picturesque but better than looking at the side of another building across an alleyway.  I am also beeping so goodness knows what I've done this time.  As p...

Up brightish and disgustingly early for an 8 a.m. appointment.  Just about conscious enough to get dressed and showered but not in that order.  I am now having to shower with a lump cling film over my right shoulder to cover up my catheter which makes the whole process trickier than I am used to.  If you've every had as much success wrapping a ham sandwich in that stuff as I have, try wrapping your right shoulder using only your left hand.  I'll bring a plastic groundsheet with a hole in it next time. Virtuously arriving at the hospital quarter of an hour early, I then had to wait nearly 2 hours for my shot to arrive.  To make up for it, I got three pre-measured syringefuls - this would have had me passed out on the floor a few months ago.  No problem - I had nothing better to do and it gave me a chance to wade on through my Isaac Asimov tome.  Back at the hotel, what could be better than binge-watching the BBC's Hitchhiker's Guide to the Galaxy....

After a lousy night's sleep last night - hurting all over - it was time for a mixture of an energetic and lazy Saturday.  I think lazy won.  The day started officially at 6:30 when my alarm went off and I bumbled round the room in a semi-conscious state.  First job was to wrap my catheter area in plastic wrap, not my favourite material to work with.  No problem and, suitably fridge ready, I took a long hot shower.  And so to breakfast.  I think I ate something - darned if I can remember.  My cab to the hospital (no shuttle at weekends) arrived on time and,  after a short wait and a long trudge through largely deserted corridors, I arrived at my chair.  The lovely nurse took a bit of a time getting my injection ready - turned out she was combining two injections in one syringe for which I will be eternally grateful. I'm glad to say that yesterday's pain has gone away and not returned so I was able to finish the jigsaw I started yesterday...

Great night's sleep last night.  The dressing on the catheter hurt when I adopted my favourite TV watching pose - right arm behind my head - and it also made sleeping on my right side uncomfortable though by the time I woke up just after 6 this morning, it seemed to have settled down.  Yesterday's leak looked a bit gruesome so I asked them to change the dressing at the hospital this a.m.  They were delighted to do it as they never get to mess with dressings that big in the "stick needles in you" department (I don't think that's the official name. I had to have two Zarxio jabs this morning and the nurses rather sportingly conspired to stick a syringe in each arm at the same time.  The whole job was over in 5 minutes plus the wait time for the Zarxio to come up from the dispensary so I was done just in time to miss the hourly shuttle back to SECU House.  The shuttle driver is from New Rochelle and was intimately acquainted with the house from the Dick Van Dy...

20 days until transplant day and it started with a great night's sleep.  Breakfast was a simple affair consisting of nothing at all in preparation for my catheter installation.  After having a mercifully small amount of blood taken first thing, I went on to have a long, slow Zarxio injection which I think was far more uncomfortable for the nurse giving it to me than it was for me as she had to bend double to stick it in the back of my arm.  Glad I had Susan there for moral support as, quite frankly, that injection was quite painful. Done an hour early, we wandered off to my next appointment which was the fitting of the catheter through which I will get me stem cell transplant.  There is quite a lot of tubing involved in this as the 3 catheter tubes are in front of my right collar bone while the tube runs through a major vein pretty close to my heart.  The procedure was quite painful in parts - if you've ever tried pushing a skewer through a tough piece of steak...

This is officially "Day -21" - yup, negative 21 because transplant day is day 0.  This was my last very short teaching day for the calendar year - only one class at 9 a.m. due to the coincidence of Wednesday (no Blue Block) and Day C (no Red Block) so I was able to get home by 10:30.  Having finished packing my bag and inevitably forgetting something, Susan and I headed for Winston-Salem, arriving at my home-from-home( SECU House) at 3 p.m. in plenty of time for my 4 p.m. appointment.  Check-in was a little more drawn out than the usual hotel check-in but it was reassuring to learn that nobody was allowed to bring in a gun, booze or tobacco. We got to the Cancer Center well before 4 p.m. and spent the next couple of hours talking to sundry people about the risks and benefits of the transplant and signing a mountain of forms.  Nothing medical happened beyond my heart and lungs being listened to.  So we were both more than ready for dinner at the Village Tavern w...

OK, so my immune system is going to be on the blink for a couple of months.  So I have to avoid crowds including schools, malls, cinemas, concerts and Japanese commuter trains.  I can live with that.  But it also means that I have to modify my eating habits and some of this cuts deep.  As of New Year's Eve, I am not allowed to eat any of the following :- Steak that is not well done Pork and chicken that are not thoroughly well done Underdone tofu (I didn't realise that you could underdo tofu) Cheese with mould in it (what?  No blue stilton?) Raw fish (my usual annual intake is approx nil so I can live with this one) Runny eggs Meat from the deli, not even Troyer's off the bone ham or pastrami.  I am allowed to eat meat that has been packaged in plastic and flung into a chilled cabinet but at least Dr M has said that I am allowed proper beer again.  I did not celebrate by going out and downing a couple of six packs - after a year on the wag...

Not the usual cliche of a rollercoaster ride, it's struck me that I have been slowly getting on a rollercoaster for the last month or so.  First of all, an interminably long wait full of anticipation of what is to come.  Then eventually stepping into the rollercoaster car and feeling a bit excited.  Then doing up the safety belt and realising that this thing isn't all that comfortable.  And finally waiting for the guy in charge of the thing to come and check your seat belt is done up properly - this is where I am at now, having been to Wake Forest last week and examined from almost very possible direction.  Wake Forest very efficiently posted all my results on my personal wee website so I can keep track of things - all the numbers look fine to my uneducated eye, all having moved in the right direction except some of those they told me might go the wrong way. So now I sit and wait for the coaster to start its slow chug up the hill to the first precipitate drop....

Susan & I drove over to Winston-Salem last night, leaving Sam home alone for the first time.  Haven't heard from the Asheville emergency services so we assume he emptied the fridge, played computer games until sunrise and is now sleeping it off.  In case you've forgotten (or haven't followed every enthralling episode), my transplant doesn't involve two operating tables and a dead body - they take my blood, filter out the stem cells and then, after they've been nasty to me for a few days, give me my stem cells back again.  Apparently they wipe out my immune system completely to the point where I am once again vulnerable to all those things I had as a kid like measles, mumps and chicken pox. Today has been an endless series of tests, starting with a nice chat with the psychologist to make sure I wasn't completely nutty as a fruit cake and then moving on to having 24 test tubes of blood taken from my right arm (shades of Tony Hancock).  Then a chest x-ray, a m...

No, nothing morbid.  Today I had the last IV infusion of chemo for my current pre-transplant treatment.  The folks at Wake Forest want my blood to be clean of other chemo so they can work their magic on it with no fear of cross-contamination.  So that means that, over the next 24 days, I am injected with nothing, swallowing nothing and all that stuff I have been injected with gets peed down the drain (more expensive than going on the booze at the Trump Hotel).  I wonder if I can have a couple of legit beers?  It is going to be interesting in the extreme to see how healthy I now am.  Am I a bit shaky because of the melanoma or because of the treatment?  Also my inclination to crawl into bed at 9 pm. I must admit I will miss the lovely people at Mercy Hospital, especially my Commonwealth Cousin.  Perhaps I'll drop in for a shot of saline for old times' sake. Monday is evaluation day to see if I am tough enough to take the treatment....

... to quote the old English soccer supporters'' song.  The time for popping expensive pills ($50,000 plus thus far, the vast majority of which has been paid by Medicare (which the GOP want to get rid of but we'll let that one pass), is over and it's time to get serious.  So, starting tomorrow, I head for a stem cell transplant.  Tomorrow sees me having a bone marrow biopsy which literary involved drilling me a second hole in my bum to extract a chunk of my pelvis from.  I get a decent jab of happy juice (I had one about 6 months ago) and it's not too bad a procedure but it does feel like you've been kicked up the butt once the local wears off. This is followed a couple of weeks later by a full day of lab and physical tests to make sure I'm strong enough to survive the transplant (I am reassuringly told I don't seem to have any problem or the docs would not be considering it).  Once those tests start, my life switches to one that is 50-50 at home in Ash...

Always ready for a road trip, this weekend saw a busload (and three carloads of various sizes) of students, teachers and parents from Carolina Day School head for the NCTC one act play competition in Boiling Springs.  Most people left school at 7 a.m. Friday but I stuck around until after lunch as I had a full morning teaching and was driving on my own - there's always a nagging doubt that I'll get halfway somewhere and decide I've gone far enough which would not be a good plan if I had half the cast in tow. Friday was an unspeakably lovely day here - the sun was out, the sky a deep blue and, had I not had Fleeetwood Mac and John Mayall playing just a touch too loud, I could probably also remark that the birds were singing.  I had all afternoon to do the hour and a half drive so, just to piss off my GPS, I took the country route, navigating by compass until I figured I was about 30 miles from Boiling Springs when I finally let the GPS have its own way.  I headed out th...

Last Wednesday Susan and I took a trip to Wake Forest Baptist Hospital to check in with their cancer experts.  It was more or less good news all round though I was glad Susan took the time off work to drive me there - I was nearly asleep on the way back.  It's also absolutely essential to have her around as her ability to remember detail is far better than mine.  So if any of the following makes no sense, it's my fault, not the hospital's. The next step in my treatment is to have another month-long cycle of chemotherapy (or two), followed by a stem cell transplant.  If you've been paying attention you'll know that I don't need a donor but thank you to the people who have offered to be donors.  They take my own blood, remove a bunch of stem cells - they'd like 10 million but must have at least 2 million - and then put the blood back into me.  I get to stay in hospital for about a week to keep me away from sick people (odd logic) and so that I'm cl...

Got to school bright and early ready for a full day at my desk (even though the skinflints pay me less than half pay).  Opened up the laptop and stared blankly at the logon screen - I had no bloody idea what my password was.  After a few abortive attempts at old passwords, random pokes at the keyboard and so on, Windows finally locked me out - "see your system administrator".  OK - I needed the exercise so up the hill I trudged to pound on the only locked door on the campus.  They couldn't get it open so they were clearly having as good a day as I was. So I went to the head coach's office and phoned them.  "Leave it to us - we'll change your password to blahblah and you log on with that and then change it to something you have never used before.  OK - back to my room and logged in with blahblah and changed it to something I may remember.  Needless to say, while all this was going on I remembered my old password but Windows wouldn't let me use that aga...

As we live not far from where Nina Simone lived, why not pinch one of her song titles for a post?  It suddenly struck me on Thursday afternoon how bloody great I felt - not tired, not dopey but ready for anything.  So I did stuff - sanded some window frames, went for a walk, played the guitar, wrote a bit of my song for Synesthesia.  Then I had some leftover curry and felt bloody awful again but it was great while it lasted (I had more of the same leftover curry for lunch on Saturday and felt fine after it).  Still, it is good to see that some of my numbers are moving in the right direction and I'm focusing on that.  My hip finally stopped hurting, more or less, so I trotted out yesterday to ref a couple of fairly gentle soccer games.  By halfway through the first half of the second game my hip had once again decided this was a bloody silly pastime so I was pretty glad that the teams weren't the most mobile in the world.  As autumn is now here (it's g...

On Saturday morning I went to Mission Hospital for an MRI.  Handled in their usual efficient manner, I was kept hanging around for no more than 2 or 3 minutes in my entire hour and a half there.  Starting off by changing into scrubs and making sure I'd taken off all my metal bits and pieces (they let me keep my wedding ring on as it's largely gold), I was given a pair of earplugs which rendered me almost completely deaf.  I was then given instructions on what to do and what not to do - fortunately I have had an MRI before and am a pretty good lip reader so no problems there. It was then time to be threaded into the tube of the MRI.  It's pretty small and I'm sure a lot of folks around here wouldn't fit.  You can't sit up once you're in there and I simply had to ignore my itchy foot until the itch went away.  Despite the noise (which started out sounding like a high speed didgeridoo and went through a remarkable repertoire of chunks, clicks, bangs and whirr...

OK - this is getting past a sodding joke.  I've had a week and a bit off chemo during which I have become less dopey, more alert, slightly more intelligent and as deaf as ever.  The one thing that hasn't improved is the pain in my legs  (and my typing but that's two things).  I reffed three under-12 soccer games yesterday and couldn't keep up with the kids.  Fortunately they didn't run that much so I was able to move around "tactically" - of course I can judge that offside from the halfway line (just like most of the parents do).  And by the third game I had arrived at my braindead place where I can't remember which team is playing which way which is made worse when they decide to pass backwards, making me think that their own backs are offside.  Still, I got yelled at only once by a coach so that's not too bad.  In my own defence, it was a minor foul for which I was going to award a free kick but had to wait to see if the non-offending team gaine...

I mentioned my dud leg at my chemo session on Tuesday and the world went into Grey's Anatomy mode (which doesn't mean I hopped into a storage cupboard to have it off with a pretty nurse).  Instead, they sent me across the road to the ultrasound place where a pretty young lady ran an electronic thingy all over my legs while I thought of Donald Trump speeches, John Arlott commentaries and kangaroo courts with my boss to avoid embarrassing myself.  The ultrasounds showed no blood clots (which is what everyone was looking for) so that was a relief.  A week down the track and both legs still hurt despite my being as lazy as possible and slapping ice on.  I reffed a couple of soccer games yesterday in the hope of loosening something up and was rewarded with a nasty ripping feeling in my right buttock. I've taken some pictures showing my chemo pipes for anyone who's interested but Microsoft in their infinite wisdom have decided not to support SD card readers in Windows 10 ...

Well that weekend can probably be most accurately described as "interesting".  I spent it slowly falling apart.  It all started on Friday morning when I woke up with my lower right leg aching, a bit like cramp though it wasn't cramped.  As Ruth at Cancer Care always asks me if I'm hurting anywhere, I figured it may not be a good sign so I gave them a ring.  They weren't at all worried so I slapped an ice pack on it which helped more than a little.  It wasn't any better Saturday morning (notice that it didn't hurt enough to keep me awake) so, as I had a couple of soccer games to ref, I plastered it with Deep Heat (or CVS's cheapo imitation) and trotted off to ref. One of the teams didn't turn up for the first game so, as there were 13 people there (refs, players, coach) we decided on a quick game of 6 a side with me reffing.  All went well until I decided to play the last 10 minutes at which point both legs decided I should act my sodding age.  Fo...

Over the last few months I have looked longingly at my guitar (a La Patrie Concert CW) and at my shaky hands and thought "Maybe tomorrow," or strummed it a bit. Today I plucked it from its case determined to give it a bit of serious exercise. First I learned that tremelo is not an option - it's amazing how many incorrect combinations of 3 fingers your right hand can produce when all it has to do is pick 3-2-1 repeatedly.  Then on to some old favourites and not so favourites.  One advantage of not playing something for a while is that you forget that there are certain bits you can't play and, before you've realised it, you've reached such a bit and played it with no problem so you go back and play it again and again and grin like an idiot.  One such was the opening of Carnival - could never get from the harmonics to the chords convincingly and today it just happened without thinking about it.  Fortunately there was nobody within earshot to hear me play it...

Following the trip to Wake Forest, my meds got bumped majorly.  Instead of a Cytoxan pill, 10 steroids and a shot in the belly every Tuesday, I am now getting a Revlimid every day, 10 steroids on Tuesday and an IV drip on Tuesdays and Wednesdays.  Because Revlimid is a derivative of Thalidomide, I am not allowed to have unprotected sex with fertile women so there goes that hobby.  (The risk of doing it, other than getting belted by Susan, has never been proven.) What better way to test the safety of your meds than buggering off out of wi-fi range to England for a week.  It turned out that more of England is out of wi-fi range than anticipated - for example, my wi-fi gave up somewhere between the free connection at Starbucks on Exeter St Davids station and the free wi-fi on the train on platform 5 and didn't kick in again until I reached Heathrow 2 days later (via an overnight in Paddington the train wasn't that late). I took the Revlimid & steroids with me but ...

The soccer reffing season here in Asheville always starts with a bang - the Riverside Shootout tournament run over two weekends.  The first weekend (which was this last weekend) is for boys and the second weekend - you work it out.  I had 2 games on Saturday and two more on Sunday, both in 85 degree heat and 100% humidity so I think I held up pretty well.  Even better, my mind was up to the job - I've previously had trouble figuring out who'd done what and who should get a free kick or throw in.  A coach who'd been a nice friendly guy on Saturday decided to blow a gasket at my assistant refs on Sunday - I'm guessing he'd had a rough night or not won as many games as he'd hoped. Plans for this weekend are 3 games on Saturday and another 3 on Sunday so guess who will be as stiff as a board on Monday.    I then start a whole new chemo regime on Tuesday - still with the Revlimid and steroids but with a beefier intravenous drip with the option of having a ...

Off to Wake Forest full of hope and expectation.  Well, it was a nice drive.  It turns out that all the gunk I have been swallowing and having stuck in me has not been as successful as needed and anticipated.  So, while I feel better than I did, I am nowhere near remission which is where I should be by now.  The chemo is bumping off the nasties in my blood stream but it is also bumping off the good bits so we've got to get more aggressive while I've still got some viable marrow. This means the next step is to up the power of the chemo, filling me up through a vein infusion rather than a quick jab in the gut.  That's likely to give me a real taste of the traditional chemo side-effects of vomiting and diarrhea should be fun at school. I get this week off from chemo capsules which will give my body time to recover before I start the nastier stuff (whose name I can't remember but rest assured it will be branded on my brain as much as the others ere long).  As...

This morning Susan and I will take a drive (OK, she'll drive) to Wake Forest University Hospital to discuss a stem cell transplant.  We're not 100% clear on whether they are telling us what it's all about, if they are preparing me for one (ie checking my insurance is up to date) or saying "Hop up on the table while I drill holes in your leg".  All will be revealed.  I have had some generous offers of stem cells from some lovely people but the good news from them is that my own cells get taken, treated really nastily and then pumped back in again some days later.  This could all involve an extended stay in Winston Salem which isn't a bad place to get stuck - they like you to stay near the hospital, presumably "just in case".  Don't like the sound of that. At least it gets me out of a day of meetings at school including one about the new time and attendance management system which I suspect is going to be aimed at implementing the new overtime pay...

This last month has seen me move to a new (to me) drug, Revlimid, which is apparently a development from thalidomide.  I suspect the Distiller's Company is trying to make back the money they lost on thalidomide by bumping up the price of this beast (about $30,000 a month, very little of which, I am delighted to say, we pay).  My first month of taking it is coming to an end and I'm pretty glad about it though I don't know what next month etc has in store.  I took it for 21 days (last one is today) and will then have 7 days off during which I hope the minor side effects will go away.  The side effects are my old friends - my appetite is back to that of a 100 kg man rather than that of a Russian weightlifter, I still don't sleep Tuesday nights (that's the steroids) and I have lost my sour sense of taste which makes my exorbitantly expensive British pickles taste like crap and a carefully prepared Caesar salad taste a bit like paint. On Wednesday, Susan and I head for ...

... some of it possibly correct Like everyone else in the USA legally, I qualified for Medicare on my 65th birthday.  This was handy as I had lost my work-related health insurance when my boss cut my hours.  As part of the deal, Medicare sent me an enormous (couple of hundred pages) document "explaining" the various bits of Medicare.  It was written in no form of English with which I am familiar and my Spanish isn't up to reading the Spanish version either so I signed up for "Medicare Part A".  This is basic Medicare which covers admission to hospital. Medicare Part A As I discovered this past January, being kept in the hospital overnight doesn't constitute being admitted to hospital.  So I got stuck with a decent lump of that bill.  It also doesn't cover any drugs or, I imagine, anything they do to you while you're in hospital other than perform an operation. Medicare Part B And here I quote.... Use this list if you’re a person with Med...

Had an appointment with Dr Mike on Friday.  It was a follow up to my Monday exercise of collecting all of my urine for a 24 hour period - I will never look at a half gallon milk jug the same way again.  The main item of interest was my kappa light chains (he said, trying to sound knowledgeable) and I will freely admit to having no idea what they are beyond the fact that my urine should contain between 0.14 and 2.42 mg per dL.  When I started out at CCWNC, they stood at 450 so plenty of room for improvement.  By May I was down to 2.47 but last week I was back up to 4.11 mg/dL, leading to the possible conclusion that my body was starting to reject the chemotherapy (stupid sod). So now I am being moved onto something more aggressive - Revlimid.  Read all about it at http://www.revlimid.com.  As it is a development of thalidomide, I am under strict orders not to impregnate anyone, the odds of which are about the same as my winning the lottery.  ...

The two things my dear friend Ruth at Cancer Care obsesses about are my bowels and how many times I have fallen over.  At least I'll have something to tell her next week.  I have spent the last couple of days crapping through a straw, as they say where I come from, which is odd as I actually get a week off the chemo this week.  So, my ever-loving and long-suffering Susan rushed out to CVS and bought a packet of Loperamide HCl.  Immediate result was pretty much nothing on the innards front but I slept 18 hours or so yesterday and, while I didn't fall over at all, my progress from point A to point B had a certain similarity to the path of a ball on a pin table as I bounced off doorways and grabbed at furniture.  My innate hypochondriac informed me that I was entering some vile second phase of my cancer and that I'd be lucky to see the week out.  Susan, on the other hand, read the info leaflet that came with the pills and it informed her that side-effects incl...