I've just returned from my appointment with Dr D'Souza. I wasn't expecting to see him, thought it would be Travis again, so I was really pleased when Alwyn entered the room.
He has yet to thoroughly go over my last CT scan with a radiologist but he said that it was reassuring to see the areas in my lungs had resolved to such an extent. He wasn't too concerned about the two 1cm lymph nodes in my upper abdomen, because, as I'd mentioned earlier, they were still of a size that could be attributed to infection etc.
I told him that I was massively improved over how I was feeling two weeks ago. I have gained a couple of kilos, my cough is reducing every day and I feel well, with a lot more energy than I had when I first emailed him with my concerns.
If it weren't for the nightly fever I'd be a lot happier. He's not too worried about that either, saying it could well be linked to whatever is causing the cough and lung problems. He did of course add that it may well be Hodgkins, but that he believes a "wait and see" attitude is the best approach right now in light of my improving health.
Apparently it's not uncommon for HL patients to appear symptomatic post transplant and that not all apparent relapses actually are. So the plan now is to wait, hope that the fevers fade away and no new symptoms develop. I'll have another CT scan in a couple of months and that then will dictate where we go from here.
He did repeat what we had discussed in the past. That if I relapsed now then my options and prognosis were very limited with only palliative care available. However if I stay well for a year or so then there are other treatment options available to me such as an allogeneic transplant (someone else's stem cells).
So this all still fits in with my plans. Close the workshop, work from home and focus on keeping fit and well. Build the new house and live life to the full. Don't compromise in any way to the cancer. If it does come along for the ride, so be it, but I'm hoping it won't be able to keep up and it will be left behind in the dust :-)
Tuesday, June 30, 2009
Friday, June 26, 2009
A Little white pill ... (Footnote added)
I've come a long way since this time two weeks ago.
I've learnt a few things that have and will make my life a lot easier..
Firstly I've learnt that appetite and eating are linked in a peculiar way...
The less you eat, the less you feel like eating and effect it has on your health and well-being is enormous. I started to force myself to eat much more food than I have been, and I stop for lunch regardless of how hungry I feel. The result is that I now find my appetite returning and I'm regaining lost weight at an amazing rate. (about 2kg a week). My energy levels are up and I feel much better.
Secondly I've put the fire out in the furnace. Burning away most nights at 38+C is not a good way to gain weight. It also made for fever and chills right through the night and was often accompanied by sweating and poor sleep. What I do now is I measure my temperature at around 5pm and if it's rising, which it usually is, I take one single Nurofen tablet.
The result is that my temperature stabilizes and I get through the night without so much as a single bead of sweat. Better still I'm not burning up all those calories.
Who would have thought that taking just one single Nurofen could make such a huge improvement to my quality of life. I used to dread going to bed because that's when I was the most uncomfortable and that in turn reminded me I was sick... and my mind would start to think of all the negative things.. Now I sleep like a baby, it's fantastic!
I've heard nothing from the hospital, so I have to assume the lung washing and scrapings showed nothing treatable. I have emailed the doctors and asked that we hit the floor running on Tuesday, rather than just a debrief on my status. I have so much stuff in my head I need answers for.. I really hope there is some progress made next week. I guess we shall see...
Footnote: I just got a phone call from Travis at the hospital. He said that the lung bronchoscopy had shown nothing. But that he was very curious about the fact that there had been some resolution in the lung when comparing the last two CT scans. He said that he would need to confer with Dr D'Souza when he returned on Monday, but that it was most unusual for there to be resolution (reduction) in the lung if it were Hodgkin's. Mind you he doesn't know that I'm eating about 18 apricot kernels a day and taking 6000mg of vitamin C, so there could be some benefit there.
Anyway, he's fairly certain that the next step is a lung biopsy to see for sure just what it is that I have. Won't that be fun!!! NOT!! ;-)
So more mixed messages and reason for hope.. he still thinks it's possible I have some sort of weird virus/bacterial infection... Personally I've had enough lymphoma in my time to know the symptoms... but I'm happy to hold reality at bay for a few more weeks.
I've learnt a few things that have and will make my life a lot easier..
Firstly I've learnt that appetite and eating are linked in a peculiar way...
The less you eat, the less you feel like eating and effect it has on your health and well-being is enormous. I started to force myself to eat much more food than I have been, and I stop for lunch regardless of how hungry I feel. The result is that I now find my appetite returning and I'm regaining lost weight at an amazing rate. (about 2kg a week). My energy levels are up and I feel much better.
Secondly I've put the fire out in the furnace. Burning away most nights at 38+C is not a good way to gain weight. It also made for fever and chills right through the night and was often accompanied by sweating and poor sleep. What I do now is I measure my temperature at around 5pm and if it's rising, which it usually is, I take one single Nurofen tablet.
The result is that my temperature stabilizes and I get through the night without so much as a single bead of sweat. Better still I'm not burning up all those calories.
Who would have thought that taking just one single Nurofen could make such a huge improvement to my quality of life. I used to dread going to bed because that's when I was the most uncomfortable and that in turn reminded me I was sick... and my mind would start to think of all the negative things.. Now I sleep like a baby, it's fantastic!
I've heard nothing from the hospital, so I have to assume the lung washing and scrapings showed nothing treatable. I have emailed the doctors and asked that we hit the floor running on Tuesday, rather than just a debrief on my status. I have so much stuff in my head I need answers for.. I really hope there is some progress made next week. I guess we shall see...
Footnote: I just got a phone call from Travis at the hospital. He said that the lung bronchoscopy had shown nothing. But that he was very curious about the fact that there had been some resolution in the lung when comparing the last two CT scans. He said that he would need to confer with Dr D'Souza when he returned on Monday, but that it was most unusual for there to be resolution (reduction) in the lung if it were Hodgkin's. Mind you he doesn't know that I'm eating about 18 apricot kernels a day and taking 6000mg of vitamin C, so there could be some benefit there.
Anyway, he's fairly certain that the next step is a lung biopsy to see for sure just what it is that I have. Won't that be fun!!! NOT!! ;-)
So more mixed messages and reason for hope.. he still thinks it's possible I have some sort of weird virus/bacterial infection... Personally I've had enough lymphoma in my time to know the symptoms... but I'm happy to hold reality at bay for a few more weeks.
Tuesday, June 23, 2009
CT Scan result..
If there's one thing I have learnt from all these medical procedures it has to be how to manipulate the system to my advantage.
I'm not due to see the hospital till next Tuesday, a full week away, But I know that my CT scan results are back and everyone knows the results but me.
So I booked in to see my GP (actually another doctor that was filling in for him) and got them that way. It makes for a confused read. The areas of concern in my lungs have resolved somewhat but there are two small 1cm nodes in my upper abdomen. 1cm is very small and would not usually ring any alarm bells, but with a history of lymphoma it's not a good thing to see on a CT.
Still no results from the lung samples... they will help fill in the complete picture as to whether it's infection or relapse. Personally I think it's looking more like relapse but I live in hope.
I started feeling quite unwell on Sunday and woke feeling like I was hung-over. I'd run a high fever during the night and woken to find my mouth and lips covered in ulcers. I've battened down the hatches for a week of pain. Does seem strange the way they just pop up like that.
It's very virus-like in the way it behaves. Even the GP I saw today couldn't recollect having seen such a case before. More medical curiosity stuff... meaningless in the big scheme of things I'm guessing.
I'll update if I hear anything new... have more blood tests today so maybe something will show.
I'm not due to see the hospital till next Tuesday, a full week away, But I know that my CT scan results are back and everyone knows the results but me.
So I booked in to see my GP (actually another doctor that was filling in for him) and got them that way. It makes for a confused read. The areas of concern in my lungs have resolved somewhat but there are two small 1cm nodes in my upper abdomen. 1cm is very small and would not usually ring any alarm bells, but with a history of lymphoma it's not a good thing to see on a CT.
Still no results from the lung samples... they will help fill in the complete picture as to whether it's infection or relapse. Personally I think it's looking more like relapse but I live in hope.
I started feeling quite unwell on Sunday and woke feeling like I was hung-over. I'd run a high fever during the night and woken to find my mouth and lips covered in ulcers. I've battened down the hatches for a week of pain. Does seem strange the way they just pop up like that.
It's very virus-like in the way it behaves. Even the GP I saw today couldn't recollect having seen such a case before. More medical curiosity stuff... meaningless in the big scheme of things I'm guessing.
I'll update if I hear anything new... have more blood tests today so maybe something will show.
Thursday, June 18, 2009
Bronchoscopy.. Updated.
I just got back from hospital and I'm supposed to be under supervision for the next 12 hours due to the effects of the anesthetic given during the procedure. Apparently it can give you short term memory loss and cause you to be a risk to yourself by doing such things as frying food and forgetting etc..
However this time round I managed to over-power the anesthetic with sheer determination and I was lucid right through the procedure, which is what I wanted. However I did fall asleep for two hours in the recovery room afterwards!
I'm actually going to pop down to work for a while and do some paperwork, so I can finish the week with a clean slate, having lost one and half days already to tests.
I didn't manage to glean any sort of useful info from the doctors doing the procedure. I asked if they had seen my last CT scan, which they had, so I'm really hoping that it was clear and that is why the bronchoscopy went ahead as they looked for other causes of my cough and fever.
Reading between the lines is not a good thing and only leads me to jump to conclusions..
Hopefully I will have the results sometime early next week.
Apparently they took two scrapings from some areas of lung that showed inflammation and then took a "wash" of saline solution to see if they can grow anything (they inject it in and then suck it out). They did say at the end that they didn't see anything that was conclusive. So at least I don't have an obvious cancerous growth in there.
Anyway it's all conjecture right now.. next week will reveal all.
Till then!
OK, so I never made it to work today. I started to run a fever and felt very chilled. The dining room where I have my computers setup was awash with the mid afternoon sun. The daybed was drenched in the sun's radiant heat. I looked at the daybed, looked down at my car keys in my hand and thought "when will I next be home at this time of day, in these conditions, and in need of so much warmth?"
I curled up on the couch and slept like a baby for hours, basking in the bone warming sun's rays.
I just measured my temperature, it's 39.5C that's a full blown fever!
Is it because I have over-heated? I don't know. I feel ok, just chilled. How today's procedure with the camera in my lung could exacerbate my low grade fever I don't know. I could understand if I had an infection and we have somehow pissed it off, but I can't see how it could possibly make a Hodgkins fever worse? I'm no doctor but I've never had a fever this high unless I had an infection.
I'll monitor it closely over the next few hours and if it stays high or I start to feel unwell I'll have to call the hospital.. bugger.
I'll update later if anything exciting happens! ;-)
...Well nothing too exciting has happened, my fever reached 40C before I took some Ibuprofen to break it. My cough has completely disappeared this evening.. very weird. It's been months since I've gone so long without coughing... feels great. Hmm but I have this incredibly loud ringing in my ears! ..face it I'm a medical curiosity!
However this time round I managed to over-power the anesthetic with sheer determination and I was lucid right through the procedure, which is what I wanted. However I did fall asleep for two hours in the recovery room afterwards!
I'm actually going to pop down to work for a while and do some paperwork, so I can finish the week with a clean slate, having lost one and half days already to tests.
I didn't manage to glean any sort of useful info from the doctors doing the procedure. I asked if they had seen my last CT scan, which they had, so I'm really hoping that it was clear and that is why the bronchoscopy went ahead as they looked for other causes of my cough and fever.
Reading between the lines is not a good thing and only leads me to jump to conclusions..
Hopefully I will have the results sometime early next week.
Apparently they took two scrapings from some areas of lung that showed inflammation and then took a "wash" of saline solution to see if they can grow anything (they inject it in and then suck it out). They did say at the end that they didn't see anything that was conclusive. So at least I don't have an obvious cancerous growth in there.
Anyway it's all conjecture right now.. next week will reveal all.
Till then!
OK, so I never made it to work today. I started to run a fever and felt very chilled. The dining room where I have my computers setup was awash with the mid afternoon sun. The daybed was drenched in the sun's radiant heat. I looked at the daybed, looked down at my car keys in my hand and thought "when will I next be home at this time of day, in these conditions, and in need of so much warmth?"
I curled up on the couch and slept like a baby for hours, basking in the bone warming sun's rays.
I just measured my temperature, it's 39.5C that's a full blown fever!
Is it because I have over-heated? I don't know. I feel ok, just chilled. How today's procedure with the camera in my lung could exacerbate my low grade fever I don't know. I could understand if I had an infection and we have somehow pissed it off, but I can't see how it could possibly make a Hodgkins fever worse? I'm no doctor but I've never had a fever this high unless I had an infection.
I'll monitor it closely over the next few hours and if it stays high or I start to feel unwell I'll have to call the hospital.. bugger.
I'll update later if anything exciting happens! ;-)
...Well nothing too exciting has happened, my fever reached 40C before I took some Ibuprofen to break it. My cough has completely disappeared this evening.. very weird. It's been months since I've gone so long without coughing... feels great. Hmm but I have this incredibly loud ringing in my ears! ..face it I'm a medical curiosity!
Monday, June 15, 2009
Monday and a whole lot of progress
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.
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.
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