Yeah I know.. I'm a slacker, I said I'd post something once I got home and settled in. Let's just say it took me a few days to find my feet again.
I left the Klinik on Monday 29th Sept at 6pm. In the morning my blood counts were 4.2 WBC and 50 for the platelets. I was given two units of platelets in the afternoon and sent on my way with a fist full of antibiotic tablets for the flight home.
Mentally I'd decided that the point the plane left the ground at Munich airport was the time I'd celebrate the end of my time in Germany. I'd been focusing on that point all week. It was probably the only thing that kept me relatively sane. You may have noticed that my posts were becoming increasingly less cheerful in those final days. I really was 'over the whole Germany thing'.
So there I was on board the plane and just about to take my seat next to the window, when the passenger in the aisle seat next to me greeted me with a loud "gidday mate, where ya from?". It was so good to hear that familiar Kiwi accent! "Wellington" I replied as I shook his hand. "I'm from Masterton, Bob's the name". We buckled ourselves in and continued to talk non-stop for the next couple of hours. I completely missed the opportunity to celebrate the take-off and my departure.
Bob, like me, is a man in his mid to late forties. He is over six foot tall and maybe 100+kg's. He wore a black heavy metal tee-shirt and jeans. Business was the reason for his travel. Every two years he travels to Germany for the big transportation trade fairs as part of his job for a trucking firm. The twelve hour flight from Munich to Hong Kong seemed to take no time at all as we discussed everything from rebuilding old Ford Falcons to our mutual agreement on how we believed all Germans spoke English but kept it a secret.
At Hong Kong airport I had a two hour wait for my connecting flight. I didn't enjoy the wait. I felt quite ill, and was genuinely concerned that if I got any worse I'd have to postpone flying and stay in a hotel until it passed. I took a couple of paracetamol tablets and by the time I needed to head off to the departure gate I was feeling a lot better. The queue for the gate was huge and I'd managed somehow be be the last in line. The guy in front of me looked strangely familiar... Oh, It was Bob, only he had changed from his black tee shirt and jeans into a business shirt and pants. We joked about the odds of having the same seats again and checked out our seat numbers. Opposite ends of the plane this time. Oh well. Bob asked me what I was doing when I got to Auckland. "Sitting for two hours in the terminal waiting for the flight to Wellington" I replied. Bob handed me a card. "I'll meet you at the Koru lounge" I took the card, complimentary entry to the first class lounge, we took our seats at opposite ends of the plane and so began the second leg of the journey.
The Air New Zealand 747 was far better appointed than the Lufthansa Airbus. Firstly you have an LCD screen in the seat rest in front of you. There are dozens of movies to choose from, plus audio channels and TV shows. I watched three movies and grabbed what sleep I could in between being startled awake by the endless babies cries and noise from the people around me. The woman that sat beside me was very large. In fact I had my doubts when she first sat down that she would fit in the seat. She kind of did. The sides of her stomach poured over the arm-rest like dough. I could not place my arm anywhere near it for fear of injuring her. I pushed myself into the corner of my seat, away from her, and remained there for the next eleven and a half hours.
As promised Bob was waiting for me at the Koru Club Lounge at Auckland airport. Unlimited free food and alcohol in a peaceful environment, what a great way to waste a couple of hours.. Only I can't drink alcohol so I stuck with orange juice. Bob introduced me to his boss and we sat and talked until our flights were called.
Sarah met me at Wellington airport, It was so good to see her again. Once home at around 3pm I immediately fell asleep on the couch. I woke briefly at around 8pm for dinner and then went straight to bed and slept for another twelve hours. Even now 4 days later, I'm still sleeping almost half of each day. On Friday I had organised to get a blood test and to see my doctor, Stu. The nurse that took my blood did a great job in finding a vein and getting a sample on the first try. I congratulated her and told her that she had done better than most people had in the last two months. She asked why I had traveled to Germany and I gave her the short version, but even that took ten minutes to relay. She said she used to be an ICU nurse and she agreed that the chances I was over-dosed back in 2005 was more likely than not, based on her own experiences in hospitals. We will never know for sure.
I visited Dr Stu later that day. The blood test results were not in yet. It had only been six hours.. welcome back to New Zealand! One of the IV sites on my right wrist has become inflamed so I got Dr Stu to write out a prescription for some antibiotic cream. He also wrote me a referral for the PET scan, and I got him to state that a copy of the results and CD of the images be sent to me. I asked him if he could email me the blood results when they came through. This he did a couple of hours later. here is what he wrote....
Hi Ron
They faxed it through urgently (cos they thought it was really bad). For you, I guess, it's pretty good!
Haemoglobin 115 (130-180)
Platelets 62 (150-450)
White cell count 4.5 (4-11) with normal neutrophils
Stu
I'm pretty happy about those counts! They are higher than the same day on the last cycle. I'll get one more test next week just to make sure they are on the rise still. I really wasn't looking forward to fronting up at hospital and demanding a platelet transfusion. I still get a lot of health professionals asking me who is in charge of my treatment. They always look at me in total disbelief when I say "I am". This is why I get DR Stu to write out all my referrals etc.. without his little bit of paper, nothing gets done. Even with the PET scan we wrote that a copy had to go to Dr Dady at Wellington hospital. I don't care if he gets a copy or not, but it's a way of getting around the stupid rule they have at Pacific Radiology that you can't have a PET scan unless the results are viewed by an Oncologist. Like what the heck is Wellington Hospital going to do with my results? I'm so far off their radar I might as well be on mars. I'll send a copy to Germany.
So that's about it folks, I'm feeling pretty good. I'm looking a lot healthier than I was when I left. It's only day 21 of the second cycle so I'm still recovering. Day 28 is when you'd consider that the treatment period is over.
This Monday I shall book a time for my PET scan, hopefully early November. Results from that should come trough a week or two after that.
Hopefully I will be posting some good news here after firing off an email reminder to those of you that have subscribed to my Blog-Roll (in the post below) in about mid November.
Till then... Ron
Saturday, October 4, 2008
Monday, September 29, 2008
Day 16: Going Home. and the Blog roll-call
Finally, it's time to go home. In four hours time the big yellow taxi comes and takes me away.
This morning my wbc was 4.2 and platelets 50. I've had another granocyte injection and later this afternoon I'll get two final units of platelets. Over the next few days/week my counts should improve naturally as my marrow slowly builds.
I've also been give another IV of antibiotics to get me through the trip home.
It sure has been an incredibly long time here. At first it was an adventure, but after the first cycle was complete it became an ordeal. Everything repeated, and although sometimes it was good to know what I was in for, It didn't necessarily make it any easier.
Looking back over the blog I can see the patterns, some days I was up, other days I was down. Some days I was very critical and on others was very pleased with the treatment. In hindsight perhaps the steroids had a part to play there. No doubt, once I can look back on things with hindsight I may need to do some judicious editing. :)
One of the things I've noticed about other peoples Blogs that have been about cancer or a period of cancer treatment, Is that often they suddenly stop. Nothing more is posted. No PET scan results, no updates as to whether the disease has relapsed or gone into long term remission. This can actually be quite depressing if you happen to stumble upon a blog, get involved in it and then be left with the impression that maybe things didn't work out, or even worse the blog's writer has passed away!
I'll do another post when I get home and settled back in. After that I'll do updates on my state of health as test results etc come in. The first will be in 8-10 weeks time after my PET scan.
Then every 3-6 months after that.
What I have done is set up a mailing list on my server. The idea is that by clicking the link below and sending me an email, you'll be notified when I post an update. Please do this even if I already have your email address as it won't automatically be added to the reminder mailing list.
To be added to that list, please click the email link below and hit send on your email client.
Otherwise just send a blank email to blogroll@my-place.co.nz to be added.
>>> Add me to the Blog Roll-call list <<<
Thank you for sharing in my journey, It's been great sharing it with you.
The dozens of emails and comments you have all sent me have been an enormous source of reassurance and comfort and I thank you all very much.
...Ron
This morning my wbc was 4.2 and platelets 50. I've had another granocyte injection and later this afternoon I'll get two final units of platelets. Over the next few days/week my counts should improve naturally as my marrow slowly builds.
I've also been give another IV of antibiotics to get me through the trip home.
It sure has been an incredibly long time here. At first it was an adventure, but after the first cycle was complete it became an ordeal. Everything repeated, and although sometimes it was good to know what I was in for, It didn't necessarily make it any easier.
Looking back over the blog I can see the patterns, some days I was up, other days I was down. Some days I was very critical and on others was very pleased with the treatment. In hindsight perhaps the steroids had a part to play there. No doubt, once I can look back on things with hindsight I may need to do some judicious editing. :)
One of the things I've noticed about other peoples Blogs that have been about cancer or a period of cancer treatment, Is that often they suddenly stop. Nothing more is posted. No PET scan results, no updates as to whether the disease has relapsed or gone into long term remission. This can actually be quite depressing if you happen to stumble upon a blog, get involved in it and then be left with the impression that maybe things didn't work out, or even worse the blog's writer has passed away!
I'll do another post when I get home and settled back in. After that I'll do updates on my state of health as test results etc come in. The first will be in 8-10 weeks time after my PET scan.
Then every 3-6 months after that.
What I have done is set up a mailing list on my server. The idea is that by clicking the link below and sending me an email, you'll be notified when I post an update. Please do this even if I already have your email address as it won't automatically be added to the reminder mailing list.
To be added to that list, please click the email link below and hit send on your email client.
Otherwise just send a blank email to blogroll@my-place.co.nz to be added.
>>> Add me to the Blog Roll-call list <<<
Thank you for sharing in my journey, It's been great sharing it with you.
The dozens of emails and comments you have all sent me have been an enormous source of reassurance and comfort and I thank you all very much.
...Ron
Sunday, September 28, 2008
Day 15: Marrow responding right on cue!
Well what a relief that is! I tell ya, you could set your watch by it. Platelets are 71 and the WBC has doubled to 1.2 overnight. The platelet transfusion yesterday should have only raised the count by 40, so there is strong indication that I'm making my own again. The doctors were very surprised as they were talking about giving me another transfusion today and expected the count to be around 40 for the platelets.
Tonight I have the last of my Dendritic Cell Vaccine shots, and a shot of Interferon. Before that I'll have another blood test. I'd expect to see the WBC in the 2's by then.
All going well I'll be free to leave tomorrow.
I can't believe how long its been! By the time I return to NZ it would have been almost two months. That's a long time to spend away, most of it in spent shut in a small room.
Although Sarah did make it over here for two weeks, and we did get out a little, it doesn't really compare to quality time spent together back home in each others company. For the first week she was here I was still in treatment. Finally I can start thinking about the finer things in life again.. Good company, good food, maybe a tiny amount of good wine.
Just driving a car again will be an experience. Sarah tells me the battery has gone flat on my Impreza, she's going to bring it to the airport so I can drive home.
Then there's all the up-coming local motorsport events.. heck! How am I going to handle going from walking everywhere for the last couple of months to getting back behind the wheel of a 550hp race car? will be interesting if not slightly scary for the first time.
Sarah and I have both agreed that we will be limiting the motorsport to only local events for the foreseeable future so we can focus on building our new house. That's another thing I've mentally put on hold for quite some time.
OK.. Can you tell I'm firing myself up to leave? Must be getting exited. I'll try and temper it until tonight's counts are in.
5:42pm I've just had another blood test and my white cell count has doubled again to 2.4 in the last 6 1/2 hours. Platelets have dropped slightly to 66, that's to be expected.
My stomach is a patch-work of small yellow bruises and red spots from the many injections I've had there. I just got another three. Two of them were the vaccine, man they were big needles! I'm used to the tiny ones that the GCSF comes in. I used to do those myself, but these were big suckers! Yuk!
I also got a shot of interferon, which I'm told acts in way as to allow the vaccine to work better and improve efficacy. I'm expecting a slight fever, body aches etc overnight from the vaccine.
The plan now is to get up early tomorrow (Monday morning) and go down to the nurses station for another blood test. Based on those readings Dr D will decide if we need to administer either of the growth factors to increase counts for the trip home.
So unless something totally out of character happens overnight I'm flying home tomorrow evening!
6:42pm, Man that vaccine has got a kick! I've started shaking uncontrollably with chills. No matter what I do I can't get warm. The fever has arrived with a punch. I've taken the paracetamol the Dr D gave me. So far no improvement one hour later. Another interesting side effect was the feeling of having a cold. My nose started to run and I developed a cough from the gunk running down the back of my throat. Then just as I was convinced I had a major problem. It disappeared. What's with that!?
My lower back is aching, it feels similar to my 'pulsing back ache' B-symptom I get when my disease is active. However there is a 'sweet spot' where I can lay with no pain, so it's not the same. Phew!
My dinner has been delivered, it took me ten minutes to drag myself from my bed. It doesn't look that great anyway.. so I'll probably pass on the main. I'd better mention lunch. probably one of the best meals I've had since arriving. Roast duck on spaghetti noodles with a fresh tomato sauce. Isn't that just typical. Yeah..I've decided to scrap dinner.. not in the mood for the salty chicken and pasta.
Gosh it doesn't pay to be honest around her! Biljana just popped in to see if I was OK. So I mentioned about the chills. She checked my temperature and It's 38.3 (again) so yeah it's a fever. But I already knew that! and that is why Dr D gave me the paracetamol in the first place.
Now they have decided to hook me back up to some IV's again.. sigh. I just want to go to sleep, sweat it out and wake up tomorrow raring to go!
8:55pm: Temperature is now down to 37.6 and I'm feeling a lot better. So I'm hitting the hay.
Last day tomorrow! Woo hoo!
Tonight I have the last of my Dendritic Cell Vaccine shots, and a shot of Interferon. Before that I'll have another blood test. I'd expect to see the WBC in the 2's by then.
All going well I'll be free to leave tomorrow.
I can't believe how long its been! By the time I return to NZ it would have been almost two months. That's a long time to spend away, most of it in spent shut in a small room.
Although Sarah did make it over here for two weeks, and we did get out a little, it doesn't really compare to quality time spent together back home in each others company. For the first week she was here I was still in treatment. Finally I can start thinking about the finer things in life again.. Good company, good food, maybe a tiny amount of good wine.
Just driving a car again will be an experience. Sarah tells me the battery has gone flat on my Impreza, she's going to bring it to the airport so I can drive home.
Then there's all the up-coming local motorsport events.. heck! How am I going to handle going from walking everywhere for the last couple of months to getting back behind the wheel of a 550hp race car? will be interesting if not slightly scary for the first time.
Sarah and I have both agreed that we will be limiting the motorsport to only local events for the foreseeable future so we can focus on building our new house. That's another thing I've mentally put on hold for quite some time.
OK.. Can you tell I'm firing myself up to leave? Must be getting exited. I'll try and temper it until tonight's counts are in.
5:42pm I've just had another blood test and my white cell count has doubled again to 2.4 in the last 6 1/2 hours. Platelets have dropped slightly to 66, that's to be expected.
My stomach is a patch-work of small yellow bruises and red spots from the many injections I've had there. I just got another three. Two of them were the vaccine, man they were big needles! I'm used to the tiny ones that the GCSF comes in. I used to do those myself, but these were big suckers! Yuk!
I also got a shot of interferon, which I'm told acts in way as to allow the vaccine to work better and improve efficacy. I'm expecting a slight fever, body aches etc overnight from the vaccine.
The plan now is to get up early tomorrow (Monday morning) and go down to the nurses station for another blood test. Based on those readings Dr D will decide if we need to administer either of the growth factors to increase counts for the trip home.
So unless something totally out of character happens overnight I'm flying home tomorrow evening!
6:42pm, Man that vaccine has got a kick! I've started shaking uncontrollably with chills. No matter what I do I can't get warm. The fever has arrived with a punch. I've taken the paracetamol the Dr D gave me. So far no improvement one hour later. Another interesting side effect was the feeling of having a cold. My nose started to run and I developed a cough from the gunk running down the back of my throat. Then just as I was convinced I had a major problem. It disappeared. What's with that!?
My lower back is aching, it feels similar to my 'pulsing back ache' B-symptom I get when my disease is active. However there is a 'sweet spot' where I can lay with no pain, so it's not the same. Phew!
My dinner has been delivered, it took me ten minutes to drag myself from my bed. It doesn't look that great anyway.. so I'll probably pass on the main. I'd better mention lunch. probably one of the best meals I've had since arriving. Roast duck on spaghetti noodles with a fresh tomato sauce. Isn't that just typical. Yeah..I've decided to scrap dinner.. not in the mood for the salty chicken and pasta.
Gosh it doesn't pay to be honest around her! Biljana just popped in to see if I was OK. So I mentioned about the chills. She checked my temperature and It's 38.3 (again) so yeah it's a fever. But I already knew that! and that is why Dr D gave me the paracetamol in the first place.
Now they have decided to hook me back up to some IV's again.. sigh. I just want to go to sleep, sweat it out and wake up tomorrow raring to go!
8:55pm: Temperature is now down to 37.6 and I'm feeling a lot better. So I'm hitting the hay.
Last day tomorrow! Woo hoo!
Day 14: Hellooo.. Wake up Mr Marrow! It's nearly time to go home.
Oh dear! Still no activity on the bone marrow front.. My counts are worse today than yesterday.
Whites are still .6 but my platelets have dropped to 20. Maybe I was expecting too much, It was day 15 and 16 that things really got going last cycle. Day 16 unfortunately is also the day I fly home. I have a couple of options.. pull the plug tomorrow and rebook my flights if the counts have not improved, or hang out till Monday and hope for a last minute rally. If my marrow recovers exactly as it did last time then Monday will be the big day. My counts on day 16 last cycle were 4.7 WBC and 100 for platelets, easily safe enough for travel.
Dr D and I covered our options at this morning's meeting. I showed him my notebook full of meticulously detailed blood counts for each day of each cycle. ..Was good when he picked it up, studied the figures and concurred that we should see some improvement tomorrow.
He said that the airlines are usually very happy to alter flight plans when they are told by a doctor that a patient would be put at serious risk of infection if they were to fly. The big question is how soon I could get another flight.. I only need one or two extra days.
Treatment-wise, today I've had another two lots of antibiotic IV's, four of the std daily infusions, and two units of platelets. I really cranked up the speed on the drips, and managed to get through all eight by lunchtime. I hate being tied to that IV stand. Darn thing can't even dance very well.
So it's another day stuck in this tiny room unable to leave. I'm not even allowed to walk outside to stretch my legs. Everyone that enters is masked up. I feel like the boy in the bubble! Only I feel completely well, think I look healthy, and am slouching around in jeans and a tee-shirt.
Whites are still .6 but my platelets have dropped to 20. Maybe I was expecting too much, It was day 15 and 16 that things really got going last cycle. Day 16 unfortunately is also the day I fly home. I have a couple of options.. pull the plug tomorrow and rebook my flights if the counts have not improved, or hang out till Monday and hope for a last minute rally. If my marrow recovers exactly as it did last time then Monday will be the big day. My counts on day 16 last cycle were 4.7 WBC and 100 for platelets, easily safe enough for travel.
Dr D and I covered our options at this morning's meeting. I showed him my notebook full of meticulously detailed blood counts for each day of each cycle. ..Was good when he picked it up, studied the figures and concurred that we should see some improvement tomorrow.
He said that the airlines are usually very happy to alter flight plans when they are told by a doctor that a patient would be put at serious risk of infection if they were to fly. The big question is how soon I could get another flight.. I only need one or two extra days.
Treatment-wise, today I've had another two lots of antibiotic IV's, four of the std daily infusions, and two units of platelets. I really cranked up the speed on the drips, and managed to get through all eight by lunchtime. I hate being tied to that IV stand. Darn thing can't even dance very well.
So it's another day stuck in this tiny room unable to leave. I'm not even allowed to walk outside to stretch my legs. Everyone that enters is masked up. I feel like the boy in the bubble! Only I feel completely well, think I look healthy, and am slouching around in jeans and a tee-shirt.
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