I met with one of the junior oncologists today, Travis, we have crossed paths many times before in my treatment and he's a really like-able guy.
He did the all the standard tests on me. Listened to my chest, my heart and my breathing. He checked me over thoroughly for swollen lymph nodes, found none. I do this every day in the shower, been doing it for over four years now, so I knew he wouldn't find any new surprises.
I ran through my story of a cough that started on April 10th and how I had passed my concerns onto Dr D'Souza a few weeks later. I gave him the timeline between the last CT scan and where I was now. I guess if there's one thing that stands out is that the cough is no worse for the passage of time, however the constant fever is a fly in the ointment.
I told him that I had a theory (yeah another one!!) and that was that the "inflammation" which had shown on previous scans as well as the latest one, could well show lung involvement that was resistant to treatment and was "reseeding" (my words) my lymphoma time and time again. I did mention that this was my worst case scenario.
I thought we should get a CT scan done as soon as possible and that way we could see if there were new areas of involvement. This would prove Hodgkins. If the CT shows no increase then we are back with any number of possibilities. Travis said he would prefer to do a Bronchoscopy first. To rule out infections etc. I said it would all take too long and that I couldn't put a price on removing the uncertainty from my life. It's been like living under a lead blanket for the last month for both Sarah and myself.
I asked that he give me a script for a CT scan at Pacific Radiology and I'd pay for it myself if I had to, just to get things moving faster. Well what a difference going private makes! By 2:45pm this afternoon I had had my CT scan and by tomorrow afternoon the doctors will have the results. In the meantime, not wanting to be outdone, the surgery team at Wgtn hospital have asked that I arrive at 7:30am on thursday for the bronchoscopy procedure. I also called my health insurer and they said they would pay for the scan.
The net result is that I will know where I stand by either Wednesday (if they cancel the bronchoscopy, because the CT shows it's cancer) or mid next week when the cultures come back if they have grown some sort of nasty. Wouldn't that be a fantastic bit of news... "I'm sorry Mr Scanlan but you have Legionnaires disease" and I jump up kiss the doctor and do a victory dance.
I live in hope.
My weight has dropped to just under 70kg. It's all my fault too. I knew I was running a fever and I needed to eat more to compensate for the furnace I have blazing away. Add to that the hard physical work I've been doing since my mechanic left last month, plus I'd been skipping lunch most days because I didn't want to shut up shop just to grab a bite to eat. Instead I ate the odd banana or a yogurt. Simply not enough energy going in to stop me loosing weight.
I've stopped that now. I'm eating three meals a day plus two meal replacement drinks and loading up on whatever I can between meals too. My goal is to get to 75kg in a month.
Oh and I gave up on trying to double the dose of my steroid inhaler, any more than the std two puffs at a time and I instantly get a horrible gagging, choking cough that makes me throw up. I learnt after the second attempt that it wasn't a happening thing! Two puffs twice a day is fine.
Regardless of what the outcome of my tests are I am still closing down my business and selling off most of my assets and toys. Just looking at where I am right now physically I would say that it could be a year before I'd be well enough to do physical work again, and that's assuming I don't have cancer. If I've got the dreaded C back then work will be the last thing on my mind.
My Evo race car is now on display at Motorsport NZ's head office where it will stay for some time. After that it may go into storage or be put on display at a friends workshop/showroom.
I've been absolutely inundated with offers of help and support, so much so that I've been blown away. Take my Toyota AE86 race car which is in pieces at the moment. An engineering acquaintance of mine has asked if he and his son could come in during the week and put the car together for me as a way of him spending time with his son, showing him about cars and helping me out at the same time. This is just one of dozens of such offers I have had from both close and distant friends over the last week.
Anyway roll on the test results!! I'll post about the bronchoscopy on Thursday.
Monday, June 15, 2009
Friday, June 12, 2009
Not well...
Well it might be time to face facts... Whatever it is that is ailing me is fairly serious and the most likely scenario now would be Hodgkins Lymphoma.
My cough continues to get worse and I've run a constant low grade fever of around 38C for the last few weeks.
Sure it certainly looked like radiation pneumonitis when considered in the light of the clear CT scan, but once the Doctor admitted that the two look exactly the same under CT and PET the alarm bells started ringing. The scan wasn't clear at all, it had an area that they thought was inflammation but just as easily could be cancer. What a bummer!
At the moment I feel very similar to how I felt when I returned from Germany and developed a severe cough and tightness in my chest with about two weeks.
Today I am at the worst I have been since symptoms first appeared two months ago. Perhaps I've picked up some sort of other bug too, hence the fatigue. Last time I exercised heaps and managed to keep on top of it energy-wise. I'll see if that helps this time too.
I emailed Dr D'Souza this morning to say that the antibiotics did not appear to be having any effect and that I was concerned that time was now of the essence due to the two month delay. I asked that he make my case a priority and if he could schedule a meeting as soon as possible to discuss further tests and my treatment options should it be Hodgkins.
He emailed me back straight away asking that I see him first thing Monday morning.
Certainly fast by any standards.
I know they will want to redo the CT scan to see if the area of involvement has changed or spread to surrounding lymph nodes, a bad thing. However if the area is in exactly the same place as the radiation field covered then it could be inflammation. If it's outside of that field it's most likely HL but could then possibly be treated with further radiation... so many possibilities..
Work-wise I have decided to close the workshop next month. I'm not well enough to be trying to do the physical work involved and I think I'll be better off concentrating on getting well, no matter what the cause is of my illness. If I need to get out of the house then there's always the building of our new house to oversee.
I'll post again next week once I've spoken with the doctors.
My cough continues to get worse and I've run a constant low grade fever of around 38C for the last few weeks.
Sure it certainly looked like radiation pneumonitis when considered in the light of the clear CT scan, but once the Doctor admitted that the two look exactly the same under CT and PET the alarm bells started ringing. The scan wasn't clear at all, it had an area that they thought was inflammation but just as easily could be cancer. What a bummer!
At the moment I feel very similar to how I felt when I returned from Germany and developed a severe cough and tightness in my chest with about two weeks.
Today I am at the worst I have been since symptoms first appeared two months ago. Perhaps I've picked up some sort of other bug too, hence the fatigue. Last time I exercised heaps and managed to keep on top of it energy-wise. I'll see if that helps this time too.
I emailed Dr D'Souza this morning to say that the antibiotics did not appear to be having any effect and that I was concerned that time was now of the essence due to the two month delay. I asked that he make my case a priority and if he could schedule a meeting as soon as possible to discuss further tests and my treatment options should it be Hodgkins.
He emailed me back straight away asking that I see him first thing Monday morning.
Certainly fast by any standards.
I know they will want to redo the CT scan to see if the area of involvement has changed or spread to surrounding lymph nodes, a bad thing. However if the area is in exactly the same place as the radiation field covered then it could be inflammation. If it's outside of that field it's most likely HL but could then possibly be treated with further radiation... so many possibilities..
Work-wise I have decided to close the workshop next month. I'm not well enough to be trying to do the physical work involved and I think I'll be better off concentrating on getting well, no matter what the cause is of my illness. If I need to get out of the house then there's always the building of our new house to oversee.
I'll post again next week once I've spoken with the doctors.
Tuesday, June 9, 2009
It's never so simple...
I just got off the phone to Dr D'Souza. Man talk about a Chinese puzzle to sort out!!
He said that the written CT report describes areas of inflammation in the lungs.. fine we knew that.
But he then goes on to say that it could be caused by three things... Hodgkin's, an infection or inflamation (radiation pneumonitis).
OK I have no problem taking that in.. But it gets tricky when trying to work out which.
He said that a PET scan would light-up exactly the same for Hodgkin's as it would for inflammation.. so we would be none the wiser. I suggested throwing steroids at it and seeing if things improved, therefore proving inflammation. He said that Hodgkin's responds to steroids much the same as an inflammation.. so once again we would be none the wiser as to which we were treating.
So we are going to throw some heavy duty antibiotics at it and see if we can't at least get some sort of result that way. If it doesn't work we are still left with two possibilities... one of which could be Hodgkin's.. I don't want to consider that. I'll stay focused on it being an inflammation.
Meantime I'm doubling my dose of inhaled steroids to see what that does as I have had some modest success with the dose I'm on now and my GP said I could double it if I felt I needed to.
He said that the written CT report describes areas of inflammation in the lungs.. fine we knew that.
But he then goes on to say that it could be caused by three things... Hodgkin's, an infection or inflamation (radiation pneumonitis).
OK I have no problem taking that in.. But it gets tricky when trying to work out which.
He said that a PET scan would light-up exactly the same for Hodgkin's as it would for inflammation.. so we would be none the wiser. I suggested throwing steroids at it and seeing if things improved, therefore proving inflammation. He said that Hodgkin's responds to steroids much the same as an inflammation.. so once again we would be none the wiser as to which we were treating.
So we are going to throw some heavy duty antibiotics at it and see if we can't at least get some sort of result that way. If it doesn't work we are still left with two possibilities... one of which could be Hodgkin's.. I don't want to consider that. I'll stay focused on it being an inflammation.
Meantime I'm doubling my dose of inhaled steroids to see what that does as I have had some modest success with the dose I'm on now and my GP said I could double it if I felt I needed to.
Monday, June 8, 2009
Radiation Pneumonitis ?
Not that I'm obsessive or anything, but having spent many dozens of hours scouring the internet for an answer to what ails me, I've found one scenario that fits like a glove. Radiation Pneumonitis.
Symptoms include constant cough and a low grade fever. I've emailed my Haematologist, again, I bet he's sick of hearing from me! He's given a quick reply asking that I phone him tomorrow morning to discuss things.
My formal written CT results show that there are some areas of inflammation in my lungs, so that too fits with my theory. It's a serious condition that if left untreated can cause permanent lung damage, but it's easily treated with steroids, so I would expect to see a rapid improvement after just a few days.
It annoys me somewhat that I first complained of a constant cough over six weeks ago and it's been completely ignored once the clear CT scan came through. If I wasn't the sort of person to push and push for a result it would be three more months until my next scheduled appointment and by then the damage would be done.
Fingers crossed that this is in fact the problem!
Symptoms include constant cough and a low grade fever. I've emailed my Haematologist, again, I bet he's sick of hearing from me! He's given a quick reply asking that I phone him tomorrow morning to discuss things.
My formal written CT results show that there are some areas of inflammation in my lungs, so that too fits with my theory. It's a serious condition that if left untreated can cause permanent lung damage, but it's easily treated with steroids, so I would expect to see a rapid improvement after just a few days.
It annoys me somewhat that I first complained of a constant cough over six weeks ago and it's been completely ignored once the clear CT scan came through. If I wasn't the sort of person to push and push for a result it would be three more months until my next scheduled appointment and by then the damage would be done.
Fingers crossed that this is in fact the problem!
Sunday, June 7, 2009
So why the long face ?
At a time when so much seems to be going so well, you'd think I'd be dancing in the street and singing from the mountain tops.. alas I just can't shake this feeling that something is not right.
Maybe I'm expecting too much too soon, maybe it's just this bitterly cold weather we have been having.. That would good if it were so simple, An attitude change could fix it all.
However I have a few thorns in my side and until I can get some answers, I can't relax and enjoy my declared "remission".
I still have a cough. It's nowhere near as bad as it was, and it seems to have been tempered by a steroidal based inhaler. I no longer cough when changing from a cold to a warm environment, but have a bit of a cough when I talk sometimes, and in the morning, like an old smokers cough.
That gives me some indication that perhaps it's the lung damage that showed on the CT scan. If I have a cough for the rest of my life.. then so be it, as long as I'm alive to complain.
The other thing I have is a constant low grade fever. I run at about 37.5C during the day and peak at about 38.4C during the night. This has been going on for about a month as far as I'm aware. At night I either sweat or feel chilled. There seems to be no in between.
A constant low grade fever is a symptom of Hodgkin's disease. However I have a CT scan that shows I'm clear so I'm going to have to take a leap of faith and believe it. The other causes of constant low grade fever are a viral infection or a lung infection. The latter fits in with the cough.. wouldn't that be a nice co-incidence.
If it were Hodgkin's and it had somehow managed to hide from a CT (How it could do that I have no idea) then I'd expect to have all my other B-Symptoms back as well. Back pain, Itchy skin, night sweats and an intolerance to alcohol which in turn produces an extreme back-ache.
None of these I have.
Other symptoms I have are lack of appetite and fatigue. These are symptoms of Hodgkin's but also of a lung infection or a virus. I emailed my Haematologist last week, but have yet to receive a reply. I'd say I'm going to have to push really hard to get someone to look at this one seriously as the clear CT will no doubt be more of a hindrance than a help when it comes to getting extra tests done.
If it's just a bug and it clears up in a few weeks, then fantastic, I'll throw a huge party and everyone is invited... if it's not ... sheesh... I wouldn't even know where to go from here.
Oh! one more bit of good news (so I don't end on a low note) Our building consent approval came through on Friday. I couldn't help but notice that all the paperwork had been date-stamped "approved" on May 27th, it just took them another week to inform us! So that piece of news can technically be added to May's list of good fortune. :)
Maybe I'm expecting too much too soon, maybe it's just this bitterly cold weather we have been having.. That would good if it were so simple, An attitude change could fix it all.
However I have a few thorns in my side and until I can get some answers, I can't relax and enjoy my declared "remission".
I still have a cough. It's nowhere near as bad as it was, and it seems to have been tempered by a steroidal based inhaler. I no longer cough when changing from a cold to a warm environment, but have a bit of a cough when I talk sometimes, and in the morning, like an old smokers cough.
That gives me some indication that perhaps it's the lung damage that showed on the CT scan. If I have a cough for the rest of my life.. then so be it, as long as I'm alive to complain.
The other thing I have is a constant low grade fever. I run at about 37.5C during the day and peak at about 38.4C during the night. This has been going on for about a month as far as I'm aware. At night I either sweat or feel chilled. There seems to be no in between.
A constant low grade fever is a symptom of Hodgkin's disease. However I have a CT scan that shows I'm clear so I'm going to have to take a leap of faith and believe it. The other causes of constant low grade fever are a viral infection or a lung infection. The latter fits in with the cough.. wouldn't that be a nice co-incidence.
If it were Hodgkin's and it had somehow managed to hide from a CT (How it could do that I have no idea) then I'd expect to have all my other B-Symptoms back as well. Back pain, Itchy skin, night sweats and an intolerance to alcohol which in turn produces an extreme back-ache.
None of these I have.
Other symptoms I have are lack of appetite and fatigue. These are symptoms of Hodgkin's but also of a lung infection or a virus. I emailed my Haematologist last week, but have yet to receive a reply. I'd say I'm going to have to push really hard to get someone to look at this one seriously as the clear CT will no doubt be more of a hindrance than a help when it comes to getting extra tests done.
If it's just a bug and it clears up in a few weeks, then fantastic, I'll throw a huge party and everyone is invited... if it's not ... sheesh... I wouldn't even know where to go from here.
Oh! one more bit of good news (so I don't end on a low note) Our building consent approval came through on Friday. I couldn't help but notice that all the paperwork had been date-stamped "approved" on May 27th, it just took them another week to inform us! So that piece of news can technically be added to May's list of good fortune. :)
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