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...