Today's lesson - when you don't update your CANCER blog for almost a week people start to wonder whether you're dead.
I'm not (obviously) but , as my mother in law might say "who was to know that,huh?"
Not much happening here it being Xmas and all but I do have a diagnosis - Large B Cell Mediastinal Lymphoma - and an appointment to see the Cornell guyts January 3rd.
From there I should start CHOP-R chemo followed by radiotherapy. The Prednisone is likely to turn me into a cherub faced fatty with anger management issues (by all accounts). Great - lots of scenes reminiscent of the one when Christoper Biggins lost the part of Widow Twanky to John Inman... with me as Biggins!
Anyway a short post today - home alone and want to maximize the time I spend watching LOST and minimize time spent on everything else.
Monday, December 26, 2005
Wednesday, December 21, 2005
A note on 'top specialists'
'Top Specialists'
... have large friendly faces...
... they explain things to you in a way that's so obviously dumbed down you wanna scream, but that makes enough sense to stop you
... they tend to disbelieve all but their own evidence
... they have minions, who prep you before said Top Specialist sweeps in and does everything again, in a more sunny manner
...have done this before - no pauses while they look for that sperm bank address somewhere on their desk; it's all pre-written and ready to be 'discreetly handed off'
... don't have water-stained ceilings - all other doctor's do
... are smiley
... carry the faint whiff of expensive automotove leather about them
... know from experience that second wives get bigger diamonds
... carry a little too much weight, making their faces and their handshakes somewhat 'piggy'
... tend to make you feel more confident than other doctors - despite their obviously not having studied your records
... are cool!
... have large friendly faces...
... they explain things to you in a way that's so obviously dumbed down you wanna scream, but that makes enough sense to stop you
... they tend to disbelieve all but their own evidence
... they have minions, who prep you before said Top Specialist sweeps in and does everything again, in a more sunny manner
...have done this before - no pauses while they look for that sperm bank address somewhere on their desk; it's all pre-written and ready to be 'discreetly handed off'
... don't have water-stained ceilings - all other doctor's do
... are smiley
... carry the faint whiff of expensive automotove leather about them
... know from experience that second wives get bigger diamonds
... carry a little too much weight, making their faces and their handshakes somewhat 'piggy'
... tend to make you feel more confident than other doctors - despite their obviously not having studied your records
... are cool!
Still no news
The transport strike made getting to Cornell a bit of a nightmare - but with some begging, pleading, threatening, walking and waving of cash we made it. Alas the support staff did not - so the wait was 4 hrs.
4 hrs to hear that pathology reports aren't back yet and they can't tell me anything at all until they are.
Still I'm in the system - they've sticked me for blood, scheduled me for bone marrow and slipped me the name of a sperm bank.
And I have another number to chase for pathology.
So almost, but not completely, a total waste of my time
4 hrs to hear that pathology reports aren't back yet and they can't tell me anything at all until they are.
Still I'm in the system - they've sticked me for blood, scheduled me for bone marrow and slipped me the name of a sperm bank.
And I have another number to chase for pathology.
So almost, but not completely, a total waste of my time
Friday, December 16, 2005
An enigma in a riddle in a curate's egg
STILL no diagnosis of what it is that I have
It's cancer - but it doesn't test like any cancer ANYONE has seen before
Next stage is to go to some of the top specialists in the country (suddenly they're interested)
That's Tuesday
All very intriguing
And not unexciting
Steve
It's cancer - but it doesn't test like any cancer ANYONE has seen before
Next stage is to go to some of the top specialists in the country (suddenly they're interested)
That's Tuesday
All very intriguing
And not unexciting
Steve
Tuesday, December 13, 2005
'aving a test
Thought that I'd try a pic direct from flickr and see what happens
Obviously there's a camp filter I seem to have turned on
I don't look QUITE this gay
Usually
Obviously there's a camp filter I seem to have turned on
I don't look QUITE this gay
Usually
Monday, December 12, 2005
Back again
Well that was quite the experience. Checked into the ASU (ambulatory surgery unit) on time, was duly processed, stripped of my belongings and coaxed into a stained gown before then being ushered into a laz-e-boy chair from which I could see the world and the world in turn could see my genitals.
Overhead light was of the bright and flourescent variety so headache soon ensued. Esquire was unusally thin (genius edition turned up far fewer geniuses than they'd anticipated it seemed) and with cell phones banned and the opportunity to harass friends reduced boredom soon set in.
And boredom had time to set in. The guy in surgery before me was certainly getting his money's worth - his 4 hr surgery taking close to 10 hrs. I amused myself by staring at the light, guaging the increase in wattage of my headache as a result of staring at the light (headaches are measured in Watts as the people on the overly bright 3rd floor at work very well know) and by watching the people arrived, get wheeled into surgery, back from recovery and stumble home - all as I waited.
Some of the more colorful vistors beyond the tan curtain told stories of their arrest for 'kicking that bitch's car' and their subsequent visits with the law. Most though merely said things like - 'you're being sick, you're being sick, that's good... right?'
It was a mixture of Richard Prior and Mel Brookes basically. And it kept me going.
Cocktail party syndrome is weird. I heard my name long before anyone popped around tan curtain (accurately dated by its symettrical patterning to 1986) and told me that after 5 hrs of waiting I'd probably be cancelled.
The labs were closed and everyone was knackered - it was Friday night after all. I shruged the shrug of the helpless and they took pity on me. Labs stayed open, a med student was dispatched to keep me company and the O.R was scrubbed ready for me.
Med student turned out not to be much company so I flashed the genitals and gave her something to look up in Grey's Anatomy when she got home.
The plan? Take a suspect node from my neck - test it in the O.R, if it was cancerous do a back flip... bring me around and send me home. If not then cut into my chest and take something from the mass there. That would mean a hospital stay. As the surgeon told me - 'when you wake up look down, more than one scar means more than one day here'
Turns out they took from my chest... I woke up a couple of times during the night (first as they shoved morphine into me and yelled 'take a deep breath, more morphine, oxygen....') the second when the woman in the next bed took to yelling "I'm confused" whenever she had the breath to do so. To her credit the nurse told her "The hell you are. You're not confused. You're annoying" and I internally cheered.
8am and I was given water, apple juice (the hospital has a deal with an orchard I swear - it's ALL fucking apple products) and ginger beer. Yum.
10am and I'm taken upstairs and told Nil By Mouth. :-(
No doctor.
No word on what's happened.
Jude arrives with my mom. I croak on as they sit bored.
No doctor.
Clueless intern arrives - no notes, no case history, no idea.
He calls my surgeon. An hour later I'm fed (apple jelly!) and on the curb waiting for a cab.
Make it up the stairs home and start coughing.
Am still coughing.
Less often and less blood.
But the scars look cool, Jude's great and my mom gets to fly home knowing that I'm nae deed yet.
Hopefully more news tomorrow - until then FISH 'N' CHIPS (again!)
Overhead light was of the bright and flourescent variety so headache soon ensued. Esquire was unusally thin (genius edition turned up far fewer geniuses than they'd anticipated it seemed) and with cell phones banned and the opportunity to harass friends reduced boredom soon set in.
And boredom had time to set in. The guy in surgery before me was certainly getting his money's worth - his 4 hr surgery taking close to 10 hrs. I amused myself by staring at the light, guaging the increase in wattage of my headache as a result of staring at the light (headaches are measured in Watts as the people on the overly bright 3rd floor at work very well know) and by watching the people arrived, get wheeled into surgery, back from recovery and stumble home - all as I waited.
Some of the more colorful vistors beyond the tan curtain told stories of their arrest for 'kicking that bitch's car' and their subsequent visits with the law. Most though merely said things like - 'you're being sick, you're being sick, that's good... right?'
It was a mixture of Richard Prior and Mel Brookes basically. And it kept me going.
Cocktail party syndrome is weird. I heard my name long before anyone popped around tan curtain (accurately dated by its symettrical patterning to 1986) and told me that after 5 hrs of waiting I'd probably be cancelled.
The labs were closed and everyone was knackered - it was Friday night after all. I shruged the shrug of the helpless and they took pity on me. Labs stayed open, a med student was dispatched to keep me company and the O.R was scrubbed ready for me.
Med student turned out not to be much company so I flashed the genitals and gave her something to look up in Grey's Anatomy when she got home.
The plan? Take a suspect node from my neck - test it in the O.R, if it was cancerous do a back flip... bring me around and send me home. If not then cut into my chest and take something from the mass there. That would mean a hospital stay. As the surgeon told me - 'when you wake up look down, more than one scar means more than one day here'
Turns out they took from my chest... I woke up a couple of times during the night (first as they shoved morphine into me and yelled 'take a deep breath, more morphine, oxygen....') the second when the woman in the next bed took to yelling "I'm confused" whenever she had the breath to do so. To her credit the nurse told her "The hell you are. You're not confused. You're annoying" and I internally cheered.
8am and I was given water, apple juice (the hospital has a deal with an orchard I swear - it's ALL fucking apple products) and ginger beer. Yum.
10am and I'm taken upstairs and told Nil By Mouth. :-(
No doctor.
No word on what's happened.
Jude arrives with my mom. I croak on as they sit bored.
No doctor.
Clueless intern arrives - no notes, no case history, no idea.
He calls my surgeon. An hour later I'm fed (apple jelly!) and on the curb waiting for a cab.
Make it up the stairs home and start coughing.
Am still coughing.
Less often and less blood.
But the scars look cool, Jude's great and my mom gets to fly home knowing that I'm nae deed yet.
Hopefully more news tomorrow - until then FISH 'N' CHIPS (again!)
Friday, December 09, 2005
Biopsy II - the revenge
So today's the day that I go in for biopsy II.
The chief of minimally invasive surgery - Dr Hermann, is the guy to try to get a lump of me today. They're planning on this taking an afternoon - check in 12.45, operation at 2.45, home by 7.00. Somehow I just don't believe that, call me an old skeptic but my experience of Chief Hermann has been that he's not a man to conform to something as everyday as a schedule.
Anyway as the snow falls and I look longingly at Judith's breakfast (no food for me today!) I'm getting ready to have him take first a suspect lump from my neck 'there's a 50-50 chance it's cancerous' and then if the 50% happens to be on my side and it's clear another sample from my chest. In the words of The Chief "You'll wake up with a cut in your neck, you might have one in your chest too, you should check when you wake up"
Spent last night coughing blood (not good. One or two 'symptoms' now seem to be popping up - as do nodes and bits of cancer. Bollocks. Seems that I'm not immune to symptoms after all.
Results should be back quickly from this one
We shall see
The chief of minimally invasive surgery - Dr Hermann, is the guy to try to get a lump of me today. They're planning on this taking an afternoon - check in 12.45, operation at 2.45, home by 7.00. Somehow I just don't believe that, call me an old skeptic but my experience of Chief Hermann has been that he's not a man to conform to something as everyday as a schedule.
Anyway as the snow falls and I look longingly at Judith's breakfast (no food for me today!) I'm getting ready to have him take first a suspect lump from my neck 'there's a 50-50 chance it's cancerous' and then if the 50% happens to be on my side and it's clear another sample from my chest. In the words of The Chief "You'll wake up with a cut in your neck, you might have one in your chest too, you should check when you wake up"
Spent last night coughing blood (not good. One or two 'symptoms' now seem to be popping up - as do nodes and bits of cancer. Bollocks. Seems that I'm not immune to symptoms after all.
Results should be back quickly from this one
We shall see
Tuesday, December 06, 2005
Two weeks wasted
So my doctor called this morining to tell me that the samples they'd taken two weeks ago during the needle biopsy were too small to get anything definitive.
To his credit needle biopsy should always be the first port of call and within an hour of hearing he'd arranged for me to meet with a guy who could take a more sizeable chunk of tumor for analysis. Results should be almost instant. Good news,
Waiting on an appointment right now... looks like I'll probably be going in tomorrow (just as my mom arrives, damn!) - not convenient but pretty bloody fast. I do like my doctor.
Sitting by the phone like some love lorn teenager right now.
More when I know it
To his credit needle biopsy should always be the first port of call and within an hour of hearing he'd arranged for me to meet with a guy who could take a more sizeable chunk of tumor for analysis. Results should be almost instant. Good news,
Waiting on an appointment right now... looks like I'll probably be going in tomorrow (just as my mom arrives, damn!) - not convenient but pretty bloody fast. I do like my doctor.
Sitting by the phone like some love lorn teenager right now.
More when I know it
Thursday, December 01, 2005
Still no word
8 days after my biopsy and still no word what I have.
And it's going to be another week at least!
The reason for the delay seems to be working out from a very small sample whether it's a B or T cell lymphoma.
Samples are now in California and while they work I continue to have this thing grow inside of me.
Frustrating but other than go in for a more extensive (and invasive) biopsy there's not much I can do.
We know that it's non-hodgkins. Right now it's still not spread (the chance of spread increases with every day)
Have 9am tomorrow with doc to talk things over
Steve
And it's going to be another week at least!
The reason for the delay seems to be working out from a very small sample whether it's a B or T cell lymphoma.
Samples are now in California and while they work I continue to have this thing grow inside of me.
Frustrating but other than go in for a more extensive (and invasive) biopsy there's not much I can do.
We know that it's non-hodgkins. Right now it's still not spread (the chance of spread increases with every day)
Have 9am tomorrow with doc to talk things over
Steve
Monday, November 28, 2005
The wait is killing me
I was supposed to get the results of my biopsy today
I didn't
And I don't know why.
The wait, quite literally, is killing me
Steve
I didn't
And I don't know why.
The wait, quite literally, is killing me
Steve
Wednesday, November 23, 2005
Back from Ozbiddle
Well the long island college hospital isn't nearly as bad as the words 'long island' would have you think,
Arrived, as instructed, at the emergency room - where we were forced to wash our hands, take a bracelet and a seat.
An hour later I'm ushered into a back room that looks like an emergency room. Sick people everywhere and a little cubicle for me. Four hours later I have a bed on the fifth floor. Sharing with a gaseous 62 year old alcoholic with a penchant for a fight - but a bed non-the less. Dear Lord how he smells.
Told to get a good night's sleep and am woken for IV, blood gas, vitals, inhalers (*2) and the sound of alarms (7 times) as Victor Meldrew with bowel problems rips out his IV over and over.
6am and my pulmonolost comes around. 7am and it's my GP. Nice touch. He tells me that he's not seen all of my tests but has had phone reports - everything seems to be contained above the abdomen. A good sign. Still when people see the size of the tumor on the CT scan they immediately touch me in a consoling way. That's scary.
Bronchioscope planned for 1pm. 11am they come get me, there's been a cancellation - Jude has just arrived for visiting. She has to go home. Scope shows that three parts of the lung are great and that one has collapsed from outside pressure. That pressure is coming from a tumor of some sort - but as the lungs are clean they can't grab a biopsy. Back up to the room, Jude comes over - old alcoholic holds the worst of his gas and his temper.
So clean bill of health on lungs cancer wise... lots of muscus though and still no tumor samples for the guys in pathology.
That means a needle biopsy. Tomorrow. But that's all that I know. No-one comes around, no-one tells me when it's due. Another LONG night (where I try to persuade my nurse to move to Singapore and she counters with the promise to take 5 days in Spain).
7.30 pulmonologist. Needle biopsy early. 11.30 they come for me. It's biopsy under CT... so that the needle can be guided. They take first CT scan and get a surprise. The tube yesterday has cleared out a lot of the liquid on my lung and suddenly the actual mass of tumor looks smaller than they'd supposed. More good news.
The test takes about an hour. They stick me with a hollow guide needle, ram the biopsy needle down that one and take strips from the diseased tissue. Then they leave me pinned and run the sample down to pathology - who want more. We repeat. Freeze some samples and I'm done.
I'm parked in a corridor for nearly two hours while they wait for a porter to come get me... but when I get back discharge papers are signed and I head for home (with Jude carrying my bag)
It's been a long couple of days that in turn have brought out the best (an ability to hand my body over and let anyone do anything to it without complaint) and worst (the snob - LONG ISLAND?) in me.
Results back Monday (it's Thanksgiving) and it seems encouraging to date. No symptoms, no spread, clean lungs and a tumor smaller than they imagined.
Of course there's bound to be a kick in the rubber parts at some point - but that's another day. And I have another day.
Happy Thanksgiving All
Steve
Arrived, as instructed, at the emergency room - where we were forced to wash our hands, take a bracelet and a seat.
An hour later I'm ushered into a back room that looks like an emergency room. Sick people everywhere and a little cubicle for me. Four hours later I have a bed on the fifth floor. Sharing with a gaseous 62 year old alcoholic with a penchant for a fight - but a bed non-the less. Dear Lord how he smells.
Told to get a good night's sleep and am woken for IV, blood gas, vitals, inhalers (*2) and the sound of alarms (7 times) as Victor Meldrew with bowel problems rips out his IV over and over.
6am and my pulmonolost comes around. 7am and it's my GP. Nice touch. He tells me that he's not seen all of my tests but has had phone reports - everything seems to be contained above the abdomen. A good sign. Still when people see the size of the tumor on the CT scan they immediately touch me in a consoling way. That's scary.
Bronchioscope planned for 1pm. 11am they come get me, there's been a cancellation - Jude has just arrived for visiting. She has to go home. Scope shows that three parts of the lung are great and that one has collapsed from outside pressure. That pressure is coming from a tumor of some sort - but as the lungs are clean they can't grab a biopsy. Back up to the room, Jude comes over - old alcoholic holds the worst of his gas and his temper.
So clean bill of health on lungs cancer wise... lots of muscus though and still no tumor samples for the guys in pathology.
That means a needle biopsy. Tomorrow. But that's all that I know. No-one comes around, no-one tells me when it's due. Another LONG night (where I try to persuade my nurse to move to Singapore and she counters with the promise to take 5 days in Spain).
7.30 pulmonologist. Needle biopsy early. 11.30 they come for me. It's biopsy under CT... so that the needle can be guided. They take first CT scan and get a surprise. The tube yesterday has cleared out a lot of the liquid on my lung and suddenly the actual mass of tumor looks smaller than they'd supposed. More good news.
The test takes about an hour. They stick me with a hollow guide needle, ram the biopsy needle down that one and take strips from the diseased tissue. Then they leave me pinned and run the sample down to pathology - who want more. We repeat. Freeze some samples and I'm done.
I'm parked in a corridor for nearly two hours while they wait for a porter to come get me... but when I get back discharge papers are signed and I head for home (with Jude carrying my bag)
It's been a long couple of days that in turn have brought out the best (an ability to hand my body over and let anyone do anything to it without complaint) and worst (the snob - LONG ISLAND?) in me.
Results back Monday (it's Thanksgiving) and it seems encouraging to date. No symptoms, no spread, clean lungs and a tumor smaller than they imagined.
Of course there's bound to be a kick in the rubber parts at some point - but that's another day. And I have another day.
Happy Thanksgiving All
Steve
Monday, November 21, 2005
hi ho hi ho... to hospital we go
Doctor just called... in a bid to get a biopsy before Thanksgiving I have to head for a hospital now.
The plan is that I arrive at the emergency room, tell them that my doctor wants me admitted, get a bed and have a biopsy tomorrow.
I think it may go this way. I arrive. Confusion ensues. Then frustration. Then more confusion.
But I may be tainted by years of NHS care.
We'll see.
Do want to be home for Amazing Race Tues night though
How sad am I?
Steve
The plan is that I arrive at the emergency room, tell them that my doctor wants me admitted, get a bed and have a biopsy tomorrow.
I think it may go this way. I arrive. Confusion ensues. Then frustration. Then more confusion.
But I may be tainted by years of NHS care.
We'll see.
Do want to be home for Amazing Race Tues night though
How sad am I?
Steve
Friday, November 18, 2005
Grrrr-nnnarrrrr
So last night I'm at work, talking light beer and the power of gezelligheid when my phone goes.
Jude. You have an MRI tomorrow. You need to take your doctor's script and be there.
Steve : But I'm not scheduled an MRI
Jude : I didn't know that
Steve : Be where?
Jude : At the place
Steve : Which place?
Jude: The place
Steve :At what time?
Jude: I don't know... maybe 2pm
Steve :2pm?
Jude: maybe not
Steve :Why can't you take a simple message?
Jude :Christ, I assumed you knew
Steve :Assumed? Assumed? ASSUMED?
Jude: Alright already
Steve :CLICK
Jude: (Dick)
An hour of calling later I find that I'm due for a sonogram, at 9am on 2nd Ave at 21st street.
I get up, drink horrible amounts of water (as required) and leave for the scan.
I get there. They have my name but don't know WHAT to sonogram.
I call my doctor. HE hasn't asked for a test.
I drink another 48 oz of water.
And wait.
And squirm.
And wait some more.
My bladder threatens explosion.
A nice woman arrives. She takes me in to a dimly lit room and cracks open the lube. The morning starts to look up. Briefly.
45 minutes later I'm slightly tacky, completely sonogrammed and on my way home. Still no idea what's going on... thyroid oddly swollen (perhaps all the iodine over the last week) and cough mysteriously under control.
A call to work. New business people who I may have infected with TB have been in to say that they like us. Then they left. We still don't know quite what it do - feeling like a kid who has a first date's bra clasp stuck in braces - it's obvious that she likes him but he can't figure out the next move.
On to a 3.45 showing of Harry Potter... despair of children and their unruly behavior and think again about whether the offer to 'cum in a cup for use at a later date' is one I should take up.
Check my e-mail - turns out Gary Glitter really IS a pervert (Thanks Helen)
There goes another of my requests to the Make A Wish foundation.
Oh and it's FREEZING
Steve
Jude. You have an MRI tomorrow. You need to take your doctor's script and be there.
Steve : But I'm not scheduled an MRI
Jude : I didn't know that
Steve : Be where?
Jude : At the place
Steve : Which place?
Jude: The place
Steve :At what time?
Jude: I don't know... maybe 2pm
Steve :2pm?
Jude: maybe not
Steve :Why can't you take a simple message?
Jude :Christ, I assumed you knew
Steve :Assumed? Assumed? ASSUMED?
Jude: Alright already
Steve :CLICK
Jude: (Dick)
An hour of calling later I find that I'm due for a sonogram, at 9am on 2nd Ave at 21st street.
I get up, drink horrible amounts of water (as required) and leave for the scan.
I get there. They have my name but don't know WHAT to sonogram.
I call my doctor. HE hasn't asked for a test.
I drink another 48 oz of water.
And wait.
And squirm.
And wait some more.
My bladder threatens explosion.
A nice woman arrives. She takes me in to a dimly lit room and cracks open the lube. The morning starts to look up. Briefly.
45 minutes later I'm slightly tacky, completely sonogrammed and on my way home. Still no idea what's going on... thyroid oddly swollen (perhaps all the iodine over the last week) and cough mysteriously under control.
A call to work. New business people who I may have infected with TB have been in to say that they like us. Then they left. We still don't know quite what it do - feeling like a kid who has a first date's bra clasp stuck in braces - it's obvious that she likes him but he can't figure out the next move.
On to a 3.45 showing of Harry Potter... despair of children and their unruly behavior and think again about whether the offer to 'cum in a cup for use at a later date' is one I should take up.
Check my e-mail - turns out Gary Glitter really IS a pervert (Thanks Helen)
There goes another of my requests to the Make A Wish foundation.
Oh and it's FREEZING
Steve
Wednesday, November 16, 2005
An odd day
Jude had her 'big' exam today - 8 hrs of writing in the frozen wastes of Albany - so I was home alone. The doctor called yesterday and told me that the CT scan had been moved forward - so it was Barium all the way for me. Nasty tasting stuff and I had to drink 450ml at midnight, another 450ml at 1.30pm and another glass at 2.15. The banana flavor was more chemical than fruit, but hey it's a minor thing.
With all the Barium I didn't use the inhaler I've had and weirdly breathed well all day. Bar one coughing fit that had me on my knees and vomitting again. That's two days running now and it's scaring me just a tad. Will talk with the doctor on Friday - it doesn't seem to be symptomatic of anything particular.
Trying to limit my 'Internet research' until I know what I have. Staging and biopsy results will let me start to dig rather than self diagnose. I keep finding ever rarer and more lethal variations on the lymphoma theme and of course as soon as I read about them the symptoms start.
A guy at work today offered me referals to some of New York's finest oncologists. I think that I may well take him up on the offer... he's well connected and I'm well insured - plus it will put my mind at rest regarding Brooklyn quality health care vs. Manhattan stuff.
Ultimately though this is a waiting game and I have so little patience it's unbelievable. Still very much 'up' - still hoping for the best and preparing for the worst. Still at work, still telling people... starting to get practical. Called health insurance people, called benefits people, looked at electric razors (all the better during Chemo), Netflix (for those bad days), bought new sheets ahead of night-sweats and looked into hand sanitizers (the better to ward off infection)
I'm either in denial, unbelievably zen or I really am a fatalist... because whilst I'm prepared to hand over my body and allow the doctors to do with it what they need in order to fix it I'm also quite happy with the idea that what will be will be (very Doris Day of me).
Anyway past my bed time.
Night all
Steve
PS - I do hope I don't get too Anne Frank with this
With all the Barium I didn't use the inhaler I've had and weirdly breathed well all day. Bar one coughing fit that had me on my knees and vomitting again. That's two days running now and it's scaring me just a tad. Will talk with the doctor on Friday - it doesn't seem to be symptomatic of anything particular.
Trying to limit my 'Internet research' until I know what I have. Staging and biopsy results will let me start to dig rather than self diagnose. I keep finding ever rarer and more lethal variations on the lymphoma theme and of course as soon as I read about them the symptoms start.
A guy at work today offered me referals to some of New York's finest oncologists. I think that I may well take him up on the offer... he's well connected and I'm well insured - plus it will put my mind at rest regarding Brooklyn quality health care vs. Manhattan stuff.
Ultimately though this is a waiting game and I have so little patience it's unbelievable. Still very much 'up' - still hoping for the best and preparing for the worst. Still at work, still telling people... starting to get practical. Called health insurance people, called benefits people, looked at electric razors (all the better during Chemo), Netflix (for those bad days), bought new sheets ahead of night-sweats and looked into hand sanitizers (the better to ward off infection)
I'm either in denial, unbelievably zen or I really am a fatalist... because whilst I'm prepared to hand over my body and allow the doctors to do with it what they need in order to fix it I'm also quite happy with the idea that what will be will be (very Doris Day of me).
Anyway past my bed time.
Night all
Steve
PS - I do hope I don't get too Anne Frank with this
Monday, November 14, 2005
Telling the workmates
Started to tell people at work today - to various responses ranging from gobsmacked, through concerned to hilariously un-PC.
Have to say that I felt most comfortable with the 'can I have your office?' type comments than the offers of support.
Did find out that I work with hands off healers, dog lovers and compulsive tea brewers. Most gratifying.
Not sure when the novelty of it all will turn into reality - but so far it's been okay.
The coughing continues - a violent reminder that all is not well.
Steve
Have to say that I felt most comfortable with the 'can I have your office?' type comments than the offers of support.
Did find out that I work with hands off healers, dog lovers and compulsive tea brewers. Most gratifying.
Not sure when the novelty of it all will turn into reality - but so far it's been okay.
The coughing continues - a violent reminder that all is not well.
Steve
Sunday, November 13, 2005
Ok - here goes
So with this bloody cough getting no better I head back to the doctor. It's been about 6 weeks, antibiotics haven't worked and I'm starting to get annoyed. He takes more blood, sticks me for TB and sends me for a CT scan. The blood comes back clean. The TB comes back negative (relieved at that because we've just had a new business meeting and nothing kills a potential client relationship quicker than the chance that you may have infected the client with something that could potentially kill them)
CT scan was fun, if expensive, all warm tingly feelings and hospital gowns. Getting home and receieving a call from your doctor asking for the pleasure of your company the next day was not. I self diagnose lung cancer and head off for uneasy sleep.
Next day I walk to 30 minutes to the doctor's office, meeting some friends on the way, and am met with respectful faces and quiet ushering into a new room. It's not lung cancer. It's lymphoma. I have a mass in my chest that's blocking my airway, has caused the partial collapse of a lung and is making me cough. No idea of the staging of the disease yet. I need another CT scan to see whether it's in the abdomin and pelvis and then a needle biopsy to find out whether I have Hodgkins or Non-Hodkins disease. Chemotherapy and radiotherapy ahead anyway. Yum. He shakes my hand gravely and I leave
The wait for another CT scan is, annoyingly, 1 week.
Head home, my wife comes sleepily from the bedroom and I tell her that I don't have pneumonia - I have cancer. Her dad died of cancer 6 weeks ago. It took him fast. She copes as only she can - and I feel strangely ok. Major worry is whether I can afford this disease. My office has a policy of cutting your pay from full to just $170 a week after two months, and disability pay doesn't kick in for a year. I tell the office. They're great. The president offers me her summer home, money to pay my rent and a guarantee that the job will be here as long as I am. I resolve to work with them for ever and ever.
Head for the cinema - Pride and Prejudice - and then home. Venture online and determine that at my age there's a chance that this is Hodgkins - I cross my fingers and head for bed.
Wake up certain of my reason to survive this. I want more than 13 years with my wife. She's the most amazing, fascinating, evolving, brilliant woman I know and I really want to be part of what's next for her. I love her madly, blindly, pasionately and with a certainty that borders on manic. There's no way that this is going to beat me.
And here I am. In Brooklyn. Starting one of those god awful cancer patient blogs. But it helps.
What next? Only a whirring machine and an armload of iodine will tell.
But thanks for being interested enough to follow along.
CT scan was fun, if expensive, all warm tingly feelings and hospital gowns. Getting home and receieving a call from your doctor asking for the pleasure of your company the next day was not. I self diagnose lung cancer and head off for uneasy sleep.
Next day I walk to 30 minutes to the doctor's office, meeting some friends on the way, and am met with respectful faces and quiet ushering into a new room. It's not lung cancer. It's lymphoma. I have a mass in my chest that's blocking my airway, has caused the partial collapse of a lung and is making me cough. No idea of the staging of the disease yet. I need another CT scan to see whether it's in the abdomin and pelvis and then a needle biopsy to find out whether I have Hodgkins or Non-Hodkins disease. Chemotherapy and radiotherapy ahead anyway. Yum. He shakes my hand gravely and I leave
The wait for another CT scan is, annoyingly, 1 week.
Head home, my wife comes sleepily from the bedroom and I tell her that I don't have pneumonia - I have cancer. Her dad died of cancer 6 weeks ago. It took him fast. She copes as only she can - and I feel strangely ok. Major worry is whether I can afford this disease. My office has a policy of cutting your pay from full to just $170 a week after two months, and disability pay doesn't kick in for a year. I tell the office. They're great. The president offers me her summer home, money to pay my rent and a guarantee that the job will be here as long as I am. I resolve to work with them for ever and ever.
Head for the cinema - Pride and Prejudice - and then home. Venture online and determine that at my age there's a chance that this is Hodgkins - I cross my fingers and head for bed.
Wake up certain of my reason to survive this. I want more than 13 years with my wife. She's the most amazing, fascinating, evolving, brilliant woman I know and I really want to be part of what's next for her. I love her madly, blindly, pasionately and with a certainty that borders on manic. There's no way that this is going to beat me.
And here I am. In Brooklyn. Starting one of those god awful cancer patient blogs. But it helps.
What next? Only a whirring machine and an armload of iodine will tell.
But thanks for being interested enough to follow along.
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