Looking back (a favourite John Mayall song title)
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. So I usually put feeling minorly crappy down to work-related stress (odd how a change of boss can move a job from the best in the world to a piece of shit in just a few days). It was particularly bad at Christmas 2015 when I not only didn't feel at all Christmassy throughout December but had no real desire to eat our 18 pound turkey unaided (think The Old Man in "A Christmas Story" losing his appetite).
Shortly after Christmas, I passed out at home, waking up only to crawl to the bathroom and throw up. Susan called an ambulance and they carted me off to Mission Hospital where the dad of one of Sam's school friends had the pleasure of telling me I had multiple myeloma. I had no idea what it was but the pretty nurse standing behind him and quietly sobbing gave a bit of a hint that it wasn't the best thing Santa had ever brought me. At this point, it seemed a good idea to upgrade my health insurance (Carolina Day had dropped me from their health insurance plan without the option and I was fortunate enough to qualify for Medicare in which I had bought the basic plan). Fortunately President Obama had made it possible for me to do the upgrade despite the pre-existing condition although I had to wait a few months for coverage. This ran up some pretty hefty bills - $13,000 or so from memory - but the financial id person (don't think I'm allowed to mention names) at Cancer Care made a quick call which scored me a $10,000 grant to take away a lot of the pain.
There followed more detailed checkups and my first round of chemo which was some pretty gentle pills to swallow along with weekly shots in the belly fat. It was time to grow up and not pass out at the thought of a needle. 18 months on I will now happily watch what they're doing though I think they're getting pretty tired of the Tony Hancock "Blood Donor" jokes.
I then got referred to Wake Forest Baptist, a three hour drive from here, for more specialised help and this led to a beefing up of my meds along with preparation for a stem cell transplant. After a couple of trips to Wake Forest, I was told that my transplant would take place shortly after Christmas 2016. This time I thoroughly enjoyed Christmas and ate my share of the 18 pounder (i.e. most of it). I was totally into alcohol-free beer by this point - I would gladly have drunk something else but, other than green "Fierce" Gatorade, I really haven't found a suitable social beverage. (I'd had a few pints of English bitter in England in August with the OK of my various docs - they seemed to have no ill effects).
First step of the transplant was to take preparatory medications whose main purpose seemed to be to give me mild diarrhoea. They gave me a plastic "hat" to crap in which made the whole exercise even more unpleasant (incidentally, I will never again eat ice cream from a miniature baseball helmet again as they look just like those hats). Next step was what was the most unpleasant surgical procedure I have ever had (not that I have had many) and that was to insert a tube into a blood vessel in my chest so they could pump stuff in and out of me without having to stick a needle in. It seemed that they made the incision as far from where the tube needed to be as possible and then shoved like hell to get it to where it was needed. A nice nurse kept me supplied with happy juice throughout the procedure but it was still bloody nasty. They congratulated me afterwards for being such a compliant patient so thank you to my Southend dentist, Dr Radin, for teaching me how to relax while people do vile things to me. (I had written a couple of hundred more words at this point when I accidentally pressed something that obliterated them pressing Ctrol-Z successfully obliterated the rest but fortunately I had saved this much of the post.) Where was I? (Sitting in the shade on the deck but that's not important).
Now the meds got beefed up in preparation for the transplant - the main effect was to make the diarrhoea worse so I took to eating mostly oatmeal, bananas, apple sauce and hard boiled egg salad but the chemicals won. The food at Wake Forest is excellent and I supplemented this diet with burgers and omelets. Ordering ice cream was a bit of crap shoot as it may have taken half an hour to get from the freezer.
All the while, Susan was an absolute angel, driving the 3 hours each way from Asheville, sometimes to find me chatty and full of exaggerated stories of how I was being treated and sometimes to find me fighting to stay awake. Being hooked up to sundry pipes and cables, I don't think I showered as often as I should, either.
The actual transplant was a piece of cake for me - I lay on a bed while they pumped gallons of blood out of me from which they extracted a load of stem cells and then pumped the rest back in. The worst bit of this procedure was having to pee in a bottle while lying flat on my back. I believe that 70% is a pass mark. Once that was done they set about killing my immune system. (I can confirm they did that as I got a dose of the kindergarten sniffles that had me coughing up a lung for what felt like a month). For a few days they did nasty things to my stem cells and then pumped them back into me.
Did I mention that having a port inserted is a bloody horrible process? Try having it taken out. No happy juice this time. Just a burly surgeon who I swear stuck his knee in the middle of my back and braced himself against the table while grunting like a tug-o'-war team to get the bloody thing out. I was convinced he was going to pull a rib or a lung out like in some gruesome Gary Larson cartoon.
So then they sent me home to recuperate. The temperature was below freezing and I had to walk to stop my muscles from shriveling so I tried walking at the mall before the stores opened. I got glowered at by the regulars because I didn't follow the rules or wear the official walk suit and expensive Nikes uniform so I transferred to Home Depot and Lowes where the employees initially regarded me with some suspicion as I wandered the aisles for an hour, occasionally stopping to look at something but never touching anything (doctor's orders). I guess the surgical mask and gloves didn't help.
And then we wait. I wasn't allowed to go back to school - being around kids when you have no immune system is not a good idea, especially as Carolina Day has an "inoculations optional" policy. I really didn't feel like getting mumps and I was told in no uncertain terms that measles could prove fatal. At least next year's curricula are well sorted out and I have written a load of new Python code. Still can't find any decent documentation on RobotC and I don't know enough about it to write a book on it though I may well stir my idle arse yet.
Finally it was time for the blood tests at day 100 and I think the doc must have been having a bad day as he gave the distinct impression that the whole thing had been a complete waste of time. It turns out that the transplant was largely but not 100% successful so, as of July 2017, I have just started another high dose regime of Revlimid, carfilzymib and (oh joy!) steroids for a couple of months followed by a low dose maintenance dose. My old friend side-effects are starting already - mild diarrhoea, tiredness and - my favorite - things tasting funny. So far that has only affected cherries which taste like paint but my favorite sour foods can't be far behind. Peaches still taste great which is good as we are buying them by the bag load.
For exercise we walked around UNCA's hilly campus today, followed by a cholesterol laden lunch at Luella's barbecue. And now I am going to continue with my assault on the book cases. I really don't need three different illustrated histories of Britain or 6 different books on the history of air transport. Is this my cue to get rich on ebay? Or to enjoy the drive to Habitat for Humanity with a bloody great box of old books.
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. So I usually put feeling minorly crappy down to work-related stress (odd how a change of boss can move a job from the best in the world to a piece of shit in just a few days). It was particularly bad at Christmas 2015 when I not only didn't feel at all Christmassy throughout December but had no real desire to eat our 18 pound turkey unaided (think The Old Man in "A Christmas Story" losing his appetite).
Shortly after Christmas, I passed out at home, waking up only to crawl to the bathroom and throw up. Susan called an ambulance and they carted me off to Mission Hospital where the dad of one of Sam's school friends had the pleasure of telling me I had multiple myeloma. I had no idea what it was but the pretty nurse standing behind him and quietly sobbing gave a bit of a hint that it wasn't the best thing Santa had ever brought me. At this point, it seemed a good idea to upgrade my health insurance (Carolina Day had dropped me from their health insurance plan without the option and I was fortunate enough to qualify for Medicare in which I had bought the basic plan). Fortunately President Obama had made it possible for me to do the upgrade despite the pre-existing condition although I had to wait a few months for coverage. This ran up some pretty hefty bills - $13,000 or so from memory - but the financial id person (don't think I'm allowed to mention names) at Cancer Care made a quick call which scored me a $10,000 grant to take away a lot of the pain.
There followed more detailed checkups and my first round of chemo which was some pretty gentle pills to swallow along with weekly shots in the belly fat. It was time to grow up and not pass out at the thought of a needle. 18 months on I will now happily watch what they're doing though I think they're getting pretty tired of the Tony Hancock "Blood Donor" jokes.
I then got referred to Wake Forest Baptist, a three hour drive from here, for more specialised help and this led to a beefing up of my meds along with preparation for a stem cell transplant. After a couple of trips to Wake Forest, I was told that my transplant would take place shortly after Christmas 2016. This time I thoroughly enjoyed Christmas and ate my share of the 18 pounder (i.e. most of it). I was totally into alcohol-free beer by this point - I would gladly have drunk something else but, other than green "Fierce" Gatorade, I really haven't found a suitable social beverage. (I'd had a few pints of English bitter in England in August with the OK of my various docs - they seemed to have no ill effects).
First step of the transplant was to take preparatory medications whose main purpose seemed to be to give me mild diarrhoea. They gave me a plastic "hat" to crap in which made the whole exercise even more unpleasant (incidentally, I will never again eat ice cream from a miniature baseball helmet again as they look just like those hats). Next step was what was the most unpleasant surgical procedure I have ever had (not that I have had many) and that was to insert a tube into a blood vessel in my chest so they could pump stuff in and out of me without having to stick a needle in. It seemed that they made the incision as far from where the tube needed to be as possible and then shoved like hell to get it to where it was needed. A nice nurse kept me supplied with happy juice throughout the procedure but it was still bloody nasty. They congratulated me afterwards for being such a compliant patient so thank you to my Southend dentist, Dr Radin, for teaching me how to relax while people do vile things to me. (I had written a couple of hundred more words at this point when I accidentally pressed something that obliterated them pressing Ctrol-Z successfully obliterated the rest but fortunately I had saved this much of the post.) Where was I? (Sitting in the shade on the deck but that's not important).
Now the meds got beefed up in preparation for the transplant - the main effect was to make the diarrhoea worse so I took to eating mostly oatmeal, bananas, apple sauce and hard boiled egg salad but the chemicals won. The food at Wake Forest is excellent and I supplemented this diet with burgers and omelets. Ordering ice cream was a bit of crap shoot as it may have taken half an hour to get from the freezer.
All the while, Susan was an absolute angel, driving the 3 hours each way from Asheville, sometimes to find me chatty and full of exaggerated stories of how I was being treated and sometimes to find me fighting to stay awake. Being hooked up to sundry pipes and cables, I don't think I showered as often as I should, either.
The actual transplant was a piece of cake for me - I lay on a bed while they pumped gallons of blood out of me from which they extracted a load of stem cells and then pumped the rest back in. The worst bit of this procedure was having to pee in a bottle while lying flat on my back. I believe that 70% is a pass mark. Once that was done they set about killing my immune system. (I can confirm they did that as I got a dose of the kindergarten sniffles that had me coughing up a lung for what felt like a month). For a few days they did nasty things to my stem cells and then pumped them back into me.
Did I mention that having a port inserted is a bloody horrible process? Try having it taken out. No happy juice this time. Just a burly surgeon who I swear stuck his knee in the middle of my back and braced himself against the table while grunting like a tug-o'-war team to get the bloody thing out. I was convinced he was going to pull a rib or a lung out like in some gruesome Gary Larson cartoon.
So then they sent me home to recuperate. The temperature was below freezing and I had to walk to stop my muscles from shriveling so I tried walking at the mall before the stores opened. I got glowered at by the regulars because I didn't follow the rules or wear the official walk suit and expensive Nikes uniform so I transferred to Home Depot and Lowes where the employees initially regarded me with some suspicion as I wandered the aisles for an hour, occasionally stopping to look at something but never touching anything (doctor's orders). I guess the surgical mask and gloves didn't help.
And then we wait. I wasn't allowed to go back to school - being around kids when you have no immune system is not a good idea, especially as Carolina Day has an "inoculations optional" policy. I really didn't feel like getting mumps and I was told in no uncertain terms that measles could prove fatal. At least next year's curricula are well sorted out and I have written a load of new Python code. Still can't find any decent documentation on RobotC and I don't know enough about it to write a book on it though I may well stir my idle arse yet.
Finally it was time for the blood tests at day 100 and I think the doc must have been having a bad day as he gave the distinct impression that the whole thing had been a complete waste of time. It turns out that the transplant was largely but not 100% successful so, as of July 2017, I have just started another high dose regime of Revlimid, carfilzymib and (oh joy!) steroids for a couple of months followed by a low dose maintenance dose. My old friend side-effects are starting already - mild diarrhoea, tiredness and - my favorite - things tasting funny. So far that has only affected cherries which taste like paint but my favorite sour foods can't be far behind. Peaches still taste great which is good as we are buying them by the bag load.
For exercise we walked around UNCA's hilly campus today, followed by a cholesterol laden lunch at Luella's barbecue. And now I am going to continue with my assault on the book cases. I really don't need three different illustrated histories of Britain or 6 different books on the history of air transport. Is this my cue to get rich on ebay? Or to enjoy the drive to Habitat for Humanity with a bloody great box of old books.
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