I've been home for just under two weeks now. I had been sent home two weeks prior to that but it really was too soon and I ended up back on the ward for five days after about a week at home.
Was a shame really because I'd put on a little bit of weight that I soon lost once back on the ward.
Oh well here I am, relatively mobile, but I have to take everything very slowly. No jumping off the couch and heading to the bathroom/kitchen/office without thinking.
I have to stand up slowly to avoid getting dizzy and then walk slowly, resisting my natural urge to move quickly. I'm capable of short bursts of movement but my body soon complains after about ten seconds. No it's best to take it easy, put on the oxygen and avoid the breathless, totally puffed consequences. I look like I've just run 100M dash otherwise.
Since getting the news that the new drug had failed completely (other than fixing my itch) Sarah and I have been in a bit of a funk. Every bit of news we have gotten lately has been bad. I've spotted Sarah with the occasional tear and red eyes when she thinks I'm out of sight. I really feel for her.
I've told her I believe she has it a lot harder than me, her pain will go on long after I make my departure and I really feel for her.
In the last couple of weeks we have pretty much covered everything about where I currently stand and we have looked at all the possible paths. I've accepted my situation and have no fear of dying.
I'm happy with the way I've lived my life and have no regrets. What does annoy me a little is that I won't get to be a grumpy old man, sitting on the porch in the sun with Sarah, enjoying a well earned old age.
I won't get to see my daughter walk down the isle or any grandchildren that may eventuate, I won't get to see my younger nieces and nephews grow up.
So I do feel a little cheated out of my old age, but I certainly have no regrets looking back.
Sounds all very glum doesn't it! But it's not really. Billions of people in third world countries never make it to 51 let alone complain about it like it's a god given right.
On a more positive note..Yesterday Sarah and I met with Dr D'Souza for an overview as to where I am at now and it was a very good discussion. The three of us were all reading from the same page and although none of it made for a great read there were a few positives to come from it.
Firstly he agreed that I should concentrate on getting well and putting on weight. Then in about eight weeks we would look at trying Gemcitabine chemotherapy.
I mentioned a drug, Bendamustine, that my sister in-law Rebecca had commented on and although it's not a drug generally used for Hodgkins Lymphoma, some doctors in the US have included it to be used concurrently with conventional chemo for HL. He said he would look into it. It's a drug that was developed in East Germany during the cold war and was totally ignored once the wall came down. Now thirty years later it's been "rediscovered" and found to be quite effective on some cancers.
I'm currently having platelet transfusions every second day and red cells every two weeks. My bone marrow appears to be shot. It's certainly got a reasonably high level of infiltration of lymphoma.
That's a very bad thing. But Alwyn had no problem with me having transfusions for as long as it takes to be ready for further treatment. So basically it's just status quo and wait. We are getting a little frustrated at spending half of every second day in hospital though. But that comes with the territory, we just have to put up with it and be glad I'm still alive to complain!
We have faced the fact that no matter what drugs I get from here, I'm not ever going to make it to old age. Our biggest fear is/was that I may not even make it to Christmas, certainly that would be the case if I have another infection like I have just had, or if the cancer suddenly becomes more active. I joked with Sarah that if I don't live out the year I have to die on December 21st, the so-called Mayan end of the world. That I said would prove conclusively once and for all that the world does in deed revolve around me! I'd die a very happy and smug little man. ;)
Joking aside, What we have decided to do is once again re-focus on living life to it's fullest and ignoring the illness as much as we can. We did this two and a half years ago when we decided we wouldn't wait for me to be well before building our new house and look how much that paid off!
We have had a fantastic two and a half years in our slice of paradise. The alternative would have been hum-drum in rented accommodation.
So it's onwards and upwards with our plan to spend quality time at our little cottage at Foxton beach. I've sold my Evo race car (more on that later) and I have made plans to purchase my dream car, even if it's just to park it up and stare at it with a silly grin. Previously I'd decided not to buy because I felt I would be too sick to enjoy it.
I asked Alwyn if he was comfortable with me having cataract surgery to improve my quality of life My eyesight is so bad I can't confidently drive a car at night or watch TV at all without glasses. He agreed it was a good idea and said he would help out by scheduling platelet transfusions to fit in with the surgery.
So today I phoned around looking for an eye surgeon that could complete everything in eight weeks. I've done it but it took a few phone calls. I did enjoy telling the ones that said they couldn't even give me a consultation for months that I'd just have to spend my money elsewhere. :>
So if we are to focus on a positive outcome then the hope is for the palliative chemo to clean out my bone marrow of lymphoma and return me to a modest state of health for a period that may well be from 1-2 years. From there anything is possible.
Here's hoping I make it another seven years like I have done so far! (and another seven after that).
So the decision to sell the Evo race car wasn't too hard. As I've said earlier I had achieved all I set out to do and to continue racing when I can barely walk is just futile. There is nothing more I could have done in that car that would have improved on it's record. "Nothing left to prove" as some have said.
So to that end I listed it on Trademe last Saturday night and within 24hrs the auction had nearly one thousand views. On Sunday night I got a phone call from an unknown caller and chose to ignore it as I'd asked for calls during work hours regarding the car. I was however tempted to listen to the voice mail that the caller left and I was impressed by the way he came across. Certainly not a tyre kicker or boy-racer.
I returned the call and within a few minutes he had decided to hit "buy now" on the auction, the car "sight unseen". I was certainly selling the race car for a bargain in order to move it on quickly without hassle or the need to bargain and he leapt at the price knowing how much they cost to build otherwise.
The next day he came to visit, loved the car (who wouldn't!) and purchased all my spares and race tyres as well, making it a very tidy little sale for me and a huge bargain for him.
My plans are to now finish the Toyota AE86 as a classic Targa race car, I just hope there's enough time to get it finished and have some fun it it. It seems to be taking years to make progress.
Even if I never get to drive it again, once finished it will be worth a modest sum and Sarah will be able to sell it easily.
I've been given the weekend off from blood transfusions, they are going to see if I can make three days without one, ..love being a guinea pig! So it's off to Foxton Beach to pick up the keys from the agent's and unload some much needed furniture at the cottage.
Till next week ....Ron
Friday, June 29, 2012
Sunday, June 24, 2012
Four weeks on the Ward: An overview and my current status.
I've probably left my update on life on the wards a little too long, it no longer seems relevant with the passing of time.
However I should put it in writing so I have a record. :)
On Monday 31st May I was moved from ICU to the Haematology ward. I was placed in a really nice isolation room by myself, I couldn't have asked for better!. Total privacy and no body else around to make noises and disturb me. I'd landed on my feet quite nicely as far as accommodation was concerned.
I was however quite unwell and I had a lot of trouble just moving around. I still couldn't shift my body weight in bed and I could only sleep propped up and on my back. A trip to the toilet involved being lifted out of bed and placed on a commode chair that could be wheeled over the toilet.
It wasn't much fun and then you had to humble yourself and ask the nurse to help with clean up.
To be honest I always thought that I'd be embarrassed having to ask for assistance toileting but in fact I was grateful for the help. Embarrassment never came into it. Even when the inevitable accidents occurred.
As time passed I got strong enough to stagger around the room by myself and even move a bit more in bed as I was forever sliding down and needing to push myself up again to eat etc.
Some of the nurses were awesome, most knew that I was self medicating and just asked me what I needed. I would look after my low grade fevers with panadol as I saw fit and take medication for diarrhea if and when it was needed.
However one nurse had other ideas and treated me like I was unfit to look after myself. I'm sure she thought she was a doctor, however had she actually been a doctor she would have let me do as I pleased like my real doctors did.
I tried to explain to her that I'd been looking after myself for the last seven years and I would be doing so again the minute I walked out the doors upon discharge. None of it seemed to sink in.
One night she said I couldn't have panadol because it might mask an infection. I pointed out that as I was already being treated with IV antibiotics for infection and that I have historically run a low grade fever twice a day for the last three years, I wasn't about to suffer through the night with chills and fever just to make her happy (and me miserable).
She left for a while and returned to my room announcing that I was to be moved to another room as "they" need the bed. She then asked if I minded being moved? I said I did, but then why was she asking? it wasn't like I had a choice! So then she said they could move me later if I liked.
That really annoyed me as it proved they didn't urgently need the bed as she had stated. I think I'd just made an enemy by daring to challenge her.
However that was easily fixed the next day when I told my Doctors on their daily rounds that I would like them to make a note on my records that I could choose if and when I needed certain drugs. Problem solved! She now had to follow my requests, no argument. :)
Life in a four bed room is all about compromise. You have to share the one toilet and try and keep your activities quiet, lights low at night etc so as to make life as easy as possible on the people around you. 70+ y/o Trevor in the bed beside me however took that to an all new level.
He had been admitted just a few hours earlier and had barely settled in when he pressed the nurse call button for attention.
Once she arrived he told her in a very loud voice that "someone" (me) had a radio on and it was very annoying. That someone was me and the radio was in fact my pre-paid TV. The volume was set as low as it would go and the speaker that resides in the remote control was placed on my pillow next to my ear. The nurse popped her head into my cubicle and strained to hear anything. She returned to Trevor and said that every patient had the right to watch TV and that the sound was set to it's lowest.
"Well how long is it going to go on for!?" asked Trevor. "As long as he likes" replied the nurse. It was 8pm, I knew I was going to have a right battle with this old coot. Next thing he's playing a radio on full volume as some petulant way of getting back at me while annoying everyone. I pulled back the curtain and asked that he turn it down and that I would set my TV volume to a level that was inaudible to him. I don't think he liked being spoken to face to face (I'd counted on that). Every now and then after that I'd speak to him through the curtain, making small talk. Always using his name as often as possible and he never bothered anyone for the rest of the week. Coward. Nuff said.
Do you remember the guy from my stay in 2009 that made annoying sanding and scratched noises all night long? I posted about it.. "A Tale of two Ronnies and a night in Geppetto's workshop."
Well what were the odds that the same guy would end up in the bed beside me after Trevor was discharged!!? It would be the middle of the night and all of a sudden there would be this sanding noise coming from his cubicle. I learnt to live with it this time. I was however very tempted to suddenly pull back the curtain and find out once and for all what it was that he was doing. I resisted.
Each day for the month I was there I got stronger and more mobile. I was soon able to make the short walk to the toilet and eventually even down the corridors. Then like now I relied on extra oxygen to help get me by. However the short walks were done without it. That was a real challenge.
For some time now I have suspected that I have a drug resistant strain of candida (thrush. From a weakened immune system and prednisone) and I had voiced this concern to one of my haematology doctors. He very much doubted that I did and said I would be dead if I had a fungal infection in my lungs. I tried to explain to him why I felt I had a drug resistant strain and that I did not think for a second that it was in my lungs. He resisted my attempts to have a culture taken and tested for drug resistance. Then after about a week of bringing the subject up I cornered him and explained exactly what my logic was. He caved in and agreed to have me tested.
It was such an empowering moment for me when he had to admit in front of four of his colleagues three days later that I was right and the lab results proved so. I punched the air declaring "Travis I was right!! you were wrong!!" his colleagues grinned while he stood there somewhat embarrassed. Win for Dr Ron!
About one week in I had another CT scan to check out my lungs and re-stage my lymphoma.
The results showed there was an improvement in my lungs but my lymphoma appeared to have not resolved at all. This suggested the expensive Adcetris drug had failed and I am now running out of options. It was the last thing I ever wanted to hear. It's a hard thing to admit but had I known this before my life and death battle with pneumonia in ICU the outcome may have been different. I don't mind admitting that I spent the rest of that day feeling more than a little depressed. But like always I soon refocused and devised a plan that I could share with my haematologist when he gave me the news officially.
It also meant that when I broke the news to Sarah I could do it gently and show her that I'd already moved on and was looking to our future and what options we had left. I think it helped. We had a meeting with Dr D'Souza the next day and because Sarah and I had already absorbed the news and prepared a plan for the future the meeting went well and Dr D'Souza agreed with our focus of getting as well as I could over the next few months and re-looking at palliative treatment options again then.
I was discharged to go home on June 7th. I spent most of that week eating all I could, trying to put back on some of the 8kg's I'd lost. I'd be needing that weight to help fight off any possible infection and to put me in a good position should we need to start more chemo anytime soon.
However I wasn't making any real progress with my health and it was decided that I should be re-admitted again just 5 days later. I made good progress over the next four days and although the Doctors said I could go home on the Saturday and stayed another day just to sure I was OK as it turns out I'm also battling a bit of bronchitis as well.
So here I am back home again, on oxygen, trying to get some muscle and weight back so I have the strength to fight the next stage of my battle.
I said to Sarah last night that this is the scariest situation we have been in since the battle began seven years ago. In the past there has almost always been a plan-B, a back-up plan that means that if it all turns to custard we still have another option. Right now it feels like we have none, I'm fighting with almost nothing in my arsenal, just a few long shot hopes of my marrow being OK for now.
I feel I've been painted into a corner. I have severe lung damage that precludes most hard line lymphoma treatments. I'm too weak to restart any sort of treatment anyway. My blood counts are appalling and I need a platelet transfusion every two days. This probably means I have bone marrow involvement but the treatment for that would be more chemo... ( along shot hope is that the bronchitis being a virus may be knocking back my blood counts)
Then before I we both got totally depressed I said to Sarah "Hey if there is anyone that can get themselves out of a painted corner it's me. I'll just build myself a set of skates with paint rollers for wheels!" :) We laughed and moved on...
I have a meeting in the Haematology clinic next week. I'm hoping for a break, I think I've earned one.
Just a slight increase in my blood counts or news that my bone marrow is cancer free.. is that too much to ask? ...Here's hoping! :)
....Ron
However I should put it in writing so I have a record. :)
On Monday 31st May I was moved from ICU to the Haematology ward. I was placed in a really nice isolation room by myself, I couldn't have asked for better!. Total privacy and no body else around to make noises and disturb me. I'd landed on my feet quite nicely as far as accommodation was concerned.
I was however quite unwell and I had a lot of trouble just moving around. I still couldn't shift my body weight in bed and I could only sleep propped up and on my back. A trip to the toilet involved being lifted out of bed and placed on a commode chair that could be wheeled over the toilet.
It wasn't much fun and then you had to humble yourself and ask the nurse to help with clean up.
To be honest I always thought that I'd be embarrassed having to ask for assistance toileting but in fact I was grateful for the help. Embarrassment never came into it. Even when the inevitable accidents occurred.
As time passed I got strong enough to stagger around the room by myself and even move a bit more in bed as I was forever sliding down and needing to push myself up again to eat etc.
Some of the nurses were awesome, most knew that I was self medicating and just asked me what I needed. I would look after my low grade fevers with panadol as I saw fit and take medication for diarrhea if and when it was needed.
However one nurse had other ideas and treated me like I was unfit to look after myself. I'm sure she thought she was a doctor, however had she actually been a doctor she would have let me do as I pleased like my real doctors did.
I tried to explain to her that I'd been looking after myself for the last seven years and I would be doing so again the minute I walked out the doors upon discharge. None of it seemed to sink in.
One night she said I couldn't have panadol because it might mask an infection. I pointed out that as I was already being treated with IV antibiotics for infection and that I have historically run a low grade fever twice a day for the last three years, I wasn't about to suffer through the night with chills and fever just to make her happy (and me miserable).
She left for a while and returned to my room announcing that I was to be moved to another room as "they" need the bed. She then asked if I minded being moved? I said I did, but then why was she asking? it wasn't like I had a choice! So then she said they could move me later if I liked.
That really annoyed me as it proved they didn't urgently need the bed as she had stated. I think I'd just made an enemy by daring to challenge her.
However that was easily fixed the next day when I told my Doctors on their daily rounds that I would like them to make a note on my records that I could choose if and when I needed certain drugs. Problem solved! She now had to follow my requests, no argument. :)
Life in a four bed room is all about compromise. You have to share the one toilet and try and keep your activities quiet, lights low at night etc so as to make life as easy as possible on the people around you. 70+ y/o Trevor in the bed beside me however took that to an all new level.
He had been admitted just a few hours earlier and had barely settled in when he pressed the nurse call button for attention.
Once she arrived he told her in a very loud voice that "someone" (me) had a radio on and it was very annoying. That someone was me and the radio was in fact my pre-paid TV. The volume was set as low as it would go and the speaker that resides in the remote control was placed on my pillow next to my ear. The nurse popped her head into my cubicle and strained to hear anything. She returned to Trevor and said that every patient had the right to watch TV and that the sound was set to it's lowest.
"Well how long is it going to go on for!?" asked Trevor. "As long as he likes" replied the nurse. It was 8pm, I knew I was going to have a right battle with this old coot. Next thing he's playing a radio on full volume as some petulant way of getting back at me while annoying everyone. I pulled back the curtain and asked that he turn it down and that I would set my TV volume to a level that was inaudible to him. I don't think he liked being spoken to face to face (I'd counted on that). Every now and then after that I'd speak to him through the curtain, making small talk. Always using his name as often as possible and he never bothered anyone for the rest of the week. Coward. Nuff said.
Do you remember the guy from my stay in 2009 that made annoying sanding and scratched noises all night long? I posted about it.. "A Tale of two Ronnies and a night in Geppetto's workshop."
Well what were the odds that the same guy would end up in the bed beside me after Trevor was discharged!!? It would be the middle of the night and all of a sudden there would be this sanding noise coming from his cubicle. I learnt to live with it this time. I was however very tempted to suddenly pull back the curtain and find out once and for all what it was that he was doing. I resisted.
Each day for the month I was there I got stronger and more mobile. I was soon able to make the short walk to the toilet and eventually even down the corridors. Then like now I relied on extra oxygen to help get me by. However the short walks were done without it. That was a real challenge.
For some time now I have suspected that I have a drug resistant strain of candida (thrush. From a weakened immune system and prednisone) and I had voiced this concern to one of my haematology doctors. He very much doubted that I did and said I would be dead if I had a fungal infection in my lungs. I tried to explain to him why I felt I had a drug resistant strain and that I did not think for a second that it was in my lungs. He resisted my attempts to have a culture taken and tested for drug resistance. Then after about a week of bringing the subject up I cornered him and explained exactly what my logic was. He caved in and agreed to have me tested.
It was such an empowering moment for me when he had to admit in front of four of his colleagues three days later that I was right and the lab results proved so. I punched the air declaring "Travis I was right!! you were wrong!!" his colleagues grinned while he stood there somewhat embarrassed. Win for Dr Ron!
About one week in I had another CT scan to check out my lungs and re-stage my lymphoma.
The results showed there was an improvement in my lungs but my lymphoma appeared to have not resolved at all. This suggested the expensive Adcetris drug had failed and I am now running out of options. It was the last thing I ever wanted to hear. It's a hard thing to admit but had I known this before my life and death battle with pneumonia in ICU the outcome may have been different. I don't mind admitting that I spent the rest of that day feeling more than a little depressed. But like always I soon refocused and devised a plan that I could share with my haematologist when he gave me the news officially.
It also meant that when I broke the news to Sarah I could do it gently and show her that I'd already moved on and was looking to our future and what options we had left. I think it helped. We had a meeting with Dr D'Souza the next day and because Sarah and I had already absorbed the news and prepared a plan for the future the meeting went well and Dr D'Souza agreed with our focus of getting as well as I could over the next few months and re-looking at palliative treatment options again then.
I was discharged to go home on June 7th. I spent most of that week eating all I could, trying to put back on some of the 8kg's I'd lost. I'd be needing that weight to help fight off any possible infection and to put me in a good position should we need to start more chemo anytime soon.
However I wasn't making any real progress with my health and it was decided that I should be re-admitted again just 5 days later. I made good progress over the next four days and although the Doctors said I could go home on the Saturday and stayed another day just to sure I was OK as it turns out I'm also battling a bit of bronchitis as well.
So here I am back home again, on oxygen, trying to get some muscle and weight back so I have the strength to fight the next stage of my battle.
I said to Sarah last night that this is the scariest situation we have been in since the battle began seven years ago. In the past there has almost always been a plan-B, a back-up plan that means that if it all turns to custard we still have another option. Right now it feels like we have none, I'm fighting with almost nothing in my arsenal, just a few long shot hopes of my marrow being OK for now.
I feel I've been painted into a corner. I have severe lung damage that precludes most hard line lymphoma treatments. I'm too weak to restart any sort of treatment anyway. My blood counts are appalling and I need a platelet transfusion every two days. This probably means I have bone marrow involvement but the treatment for that would be more chemo... ( along shot hope is that the bronchitis being a virus may be knocking back my blood counts)
Then before I we both got totally depressed I said to Sarah "Hey if there is anyone that can get themselves out of a painted corner it's me. I'll just build myself a set of skates with paint rollers for wheels!" :) We laughed and moved on...
I have a meeting in the Haematology clinic next week. I'm hoping for a break, I think I've earned one.
Just a slight increase in my blood counts or news that my bone marrow is cancer free.. is that too much to ask? ...Here's hoping! :)
....Ron
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