Well it's all done and dusted in Chicago now. A caught up with a couple of people in the ward going through the process at the moment, I had lunch with Brian Hinkle, a fellow CIDP patient who was there for his one year follow up and of course I had my appointments with Dr Allen and Dr Burt. I was there for a week so I also had time to catch up with some old friends, visit some of my favourite places and do a couple of things I wasn't able to do a couple of years ago.
However, although I would have to classify the trip as a success I still feel a little disappointed. Allow me to elaborate. This is my second evaluation. When I had the first one the results were nothing short of spectacular. Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.
In this my second evaluation I was hoping that this steep upward curve would continue to climb. I was expecting improvement albeit not as much but alas, there was none. On the plus side, there was no degradation either. But still, I couldn't help but be a little disappointed. The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it. The improvement plateaued and there it has remained.
It's not all bad though. For the first six months post HSCT I had significant marked improvement. This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.
This actually solves the biggest issue I had prior to HSCT which was the uncertainty. I never knew what the next stage in my disease progression was going to be or when. Now I know what to expect. I can move forward knowing what the future holds.
The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage. Was it all worth it. You Bet! I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.
Until next time, stay well:)
Showing posts with label Chicago. Show all posts
Showing posts with label Chicago. Show all posts
Friday, August 15, 2014
Thursday, July 31, 2014
Back in Chi Town
Can you believe it has been over two years since my transplant? Neither can I. But I'm back in the Windy city for a follow up and I have to say it is fantastic to be back. Chicago is a fantastic city and I have many fond memories. So far I have caught up with many old friends and seen Dr Burt. I got the feeling he is really excited about how far his research has progressed. He didn't tell me as such but I got the feeling that he is soon going to publish or finish some of his studies and will be announcing to the world some magnificent results. But then again I may be wrong.
In terms of my follow up they were amazed at how well I was doing. They had me fill out a bunch of disability scales and all the scores were either 1 or 0. I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.
On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle. It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction. He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.
As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain. And I mean it poured. They turned the rain all the way up to eleven ;) Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter. I also have my NCV and EMG today. I'll keep you posted on how that goes.
Stay well:)
In terms of my follow up they were amazed at how well I was doing. They had me fill out a bunch of disability scales and all the scores were either 1 or 0. I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.
On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle. It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction. He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.
As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain. And I mean it poured. They turned the rain all the way up to eleven ;) Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter. I also have my NCV and EMG today. I'll keep you posted on how that goes.
Stay well:)
Wednesday, November 6, 2013
Great news!
It's no secret that Australia is sorely behind the rest of the world in promoting HSCT as a treatment for autoimmune diseases. The article I blogged about a couple of weeks ago just proves exactly how ignorant we are too. It is embarrassing that as a highly developed country that claims to have one of the best health care systems in the world and also be a self proclaimed leader in medical research we are left wanting.
BUT it is changing. The trial at St Vincent's hospital in Sydney is proof of this. They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient. While this is great news it can also be used to highlight the short comings of the Australian system.
A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation. Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT. Now I decided to go for the treatment in Chicago. Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.
Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia. Pops is still waiting after two years, but at least the end is in sight. He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant. It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.
The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments. Australia, you need to get your act together, stop procrastinating and start saving lives.
Until next time, stay well:)
BUT it is changing. The trial at St Vincent's hospital in Sydney is proof of this. They have now done about 20 scleroderma patients, 6 MS patients and they have just commenced the process on the first CIDP patient. While this is great news it can also be used to highlight the short comings of the Australian system.
A friend of mine and fellow CIDP patient Peter Langford, more commonly known as Pops (he jokes even his mother calls him Pops) has just had his chemo mobilisation. Pops and I met on line in September of 2011 and found we both had CIDP and we were interested in HSCT. Now I decided to go for the treatment in Chicago. Unfortunately for Pops he couldn't afford to go to Chicago so he looked high and low for an Australian option which he found at St Vincent's with Dr John Moore.
Now about six months after I had started looking into HSCT I had gone to Chicago, had my transplant and returned to Australia. Pops is still waiting after two years, but at least the end is in sight. He seemed to get through his mobilisation OK too, so hopefully a month from now he will be back home recovering from his transplant. It has been tough for him too, enduring false positive results for HTLV1 virus and just undergoing the complete battery of tests that we all have to do for HSCT.
The issue is that Pops has had to not just wait, but suffer and endure his disease unnecessarily for nearly two years whilst at the same time costing time and money with expensive, medicare approved treatments. Australia, you need to get your act together, stop procrastinating and start saving lives.
Until next time, stay well:)
Thursday, June 13, 2013
What to expect when you're expecting........ HSCT
Now if you have the time and the inclination you could pretty much get all the information you need from reading my previous posts from last year. But given that most people are time poor and don't want to plough through the best part of a hundred posts I thought I'd condense it into one little post for you all to read.
Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT. It is by no means generic and don't think that if you have HSCT your experience will be exactly the same. Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.
So where do I start. Well the beginning would be logical. I contracted CIDP in 2000. It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease. I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.
It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression. It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke." There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting. Really really badly.
Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life. This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders. It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful. However, I always new 2006 was my low point and it still hung over me like the sword of Damocles. I still had CIDP and I still had cystinuria.
I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt. In his blog he wrote that Crohn's disease was an autoimmune disease. I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?" After all, CIDP is an inflammatory autoimmune disease too.
And what do you know, Dr Burt had a trial for CIDP too. I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one. I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through. In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.
Now people have called me mad, stupid, brave and strong to have had this done. I disagree with all of it. I honestly thought I didn't have a choice. Without the treatment my future didn't hold much for me. A wheel chair? palliative care? Loss of bowel and bladder control? Death? And living half a life in-between? I did not feel brave or strong I felt like I was left with only one option. Mad and stupid too? I did my research. I read the published studies and I talked to the transplant recipients who had gone before me. Everything made sense. If you had asked me I think I would have been mad not to have had it done.
So off I went to Chicago. Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial. Fortunately I was. The other worrying thought I had was what if it didn't work. I eventually reconciled this by telling myself that if I tried it and failed at least I would know. If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years. Just slowly watching myself get worse.
Strangely enough I knew that the procedure was going to be tough but that didn't bother me. I was focussed on the goal and that kept me going. I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself. I did know what I was getting myself in to.
My Chicago trip was really in two halves. The first half was all testing and appointments in the morning and the rest of the day to do as I pleased. I can't lie, it was fun although I did miss my family. I even managed to squeeze a trip into Washington DC to see some friends which was great fun. But the second half was the serious side.
I survived the mobilisation process quite well. The first round of chemo didn't hit me too hard. I was slightly off my food but I did not feel nauseous. However I did have a craving for chocolate milkshakes but others might just say that was normal for me. The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.
Finally conditioning came around. After five days of chemo it was safe to say I felt awful. Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had. Even with all the anti nausea drugs I still felt terrible. This link to one of my posts will give you a snapshot of just how bad I felt.
http://shakesandstones.blogspot.com.au/2012/04/day-7_18.html
Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home. It was a really hard flight. Even in business I felt restless and unwell. If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic. When I arrived back in Melbourne I could barely walk I was so tired.
After a month of rest and recuperation I started to feel like myself again. Since then the progress has been slow and steady but undeniable. In hindsight I am so glad I did it. Finally I not only found a treatment that halted disease progression completely but sent it back the other way. Since then I have been able to run, play cricket and go skiing. But the best part is the little things. I used to have to crawl to the bathroom in the middle of the night when I needed to go. I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.
To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease. As for me now, I have my life back. I can look forward with confidence, not worry. The glass used to be half empty, now it is half full. Don't believe me check out my video.
http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html
Stay well:)
Before I start I just want to add that what I am relating to here is all my own personal experience with HSCT. It is by no means generic and don't think that if you have HSCT your experience will be exactly the same. Everyone is different and just because you have the same disorder as me and are treated at the same facility I was with the same protocol your experience might be completely different.
So where do I start. Well the beginning would be logical. I contracted CIDP in 2000. It was a long struggle since then with current PBS approved treatments only slowing the progress of my disease. I never saw improvement and the fact that all these treatments were designed to either suppress or effect my immune system in some way most of the time I felt ordinary.
It affected every single facet of my life and was probably the main reason that in 2006 I was diagnosed with depression. It is really important to make note of this because it is very easy to look at me and say "OK, so he uses a walking stick and can't run any more but he is still the same old bloke." There was a blanket over my condition and on the outside it was all smiles and jokes but on the inside I was hurting. Really really badly.
Luckily after my diagnosis with depression I eventually received some effective treatment which in all honesty probably saved my life. This gave me the strength to pick myself up off the carpet and restart looking for effective treatments for all my disorders. It was a turning point and in 2010 I had brain surgery to arrest my tremor which was extremely successful. However, I always new 2006 was my low point and it still hung over me like the sword of Damocles. I still had CIDP and I still had cystinuria.
I ploughed myself head first into researching my illnesses and learning as much about them as possible. Eventually I stumbled on to a blog written by someone with Crohn's disease who was having HSCT in Chicago under Dr Burt. In his blog he wrote that Crohn's disease was an autoimmune disease. I got to thinking, "If this treatment (HSCT) is to treat inflammatory autoimmune disease why can't it treat CIDP?" After all, CIDP is an inflammatory autoimmune disease too.
And what do you know, Dr Burt had a trial for CIDP too. I researched to see if any other facilities around the world were doing HSCT for CIDP and found North Western Memorial Hospital in Chicago to be the only one. I looked into having it done at home in Australia and decided there was too much red tape and hoops to jump through. In hindsight if I had waited for an Australian option I would probably still be waiting and since I learnt about it I wanted it.
Now people have called me mad, stupid, brave and strong to have had this done. I disagree with all of it. I honestly thought I didn't have a choice. Without the treatment my future didn't hold much for me. A wheel chair? palliative care? Loss of bowel and bladder control? Death? And living half a life in-between? I did not feel brave or strong I felt like I was left with only one option. Mad and stupid too? I did my research. I read the published studies and I talked to the transplant recipients who had gone before me. Everything made sense. If you had asked me I think I would have been mad not to have had it done.
So off I went to Chicago. Even though based on all the information I had sent them from Australia there was still the nagging thought that I might not be accepted into the trial. Fortunately I was. The other worrying thought I had was what if it didn't work. I eventually reconciled this by telling myself that if I tried it and failed at least I would know. If I did nothing I would be kept in the nightmarish purgatory style of limbo I had been in for the last twelve years. Just slowly watching myself get worse.
Strangely enough I knew that the procedure was going to be tough but that didn't bother me. I was focussed on the goal and that kept me going. I had researched mortality rates and morbidity rates of the procedure and side effects of all the drugs and the entire procedure itself. I did know what I was getting myself in to.
My Chicago trip was really in two halves. The first half was all testing and appointments in the morning and the rest of the day to do as I pleased. I can't lie, it was fun although I did miss my family. I even managed to squeeze a trip into Washington DC to see some friends which was great fun. But the second half was the serious side.
I survived the mobilisation process quite well. The first round of chemo didn't hit me too hard. I was slightly off my food but I did not feel nauseous. However I did have a craving for chocolate milkshakes but others might just say that was normal for me. The neupogen shots didn't effect me that much either but the harvesting did leave me quite lethargic.
Finally conditioning came around. After five days of chemo it was safe to say I felt awful. Nausea, vomiting, lethargy, dizziness rash and a little disorientation were some of the side effects I had. Even with all the anti nausea drugs I still felt terrible. This link to one of my posts will give you a snapshot of just how bad I felt.
http://shakesandstones.blogspot.com.au/2012/04/day-7_18.html
Anyway, 9 days after transplant I was discharged from hospital and 5 days after that I flew home. It was a really hard flight. Even in business I felt restless and unwell. If I did the trip by myself I don't think I would have made it but I leant on my wife heavily and she was fantastic. When I arrived back in Melbourne I could barely walk I was so tired.
After a month of rest and recuperation I started to feel like myself again. Since then the progress has been slow and steady but undeniable. In hindsight I am so glad I did it. Finally I not only found a treatment that halted disease progression completely but sent it back the other way. Since then I have been able to run, play cricket and go skiing. But the best part is the little things. I used to have to crawl to the bathroom in the middle of the night when I needed to go. I couldn't walk down stairs without two hands on the handrail and nothing hurts when I sleep now.
To anyone considering the treatment I couldn't recommend it enough for any autoimmune disease. As for me now, I have my life back. I can look forward with confidence, not worry. The glass used to be half empty, now it is half full. Don't believe me check out my video.
http://shakesandstones.blogspot.com.au/2012/07/my-hsct-story.html
Stay well:)
Wednesday, October 10, 2012
A Fantastic Trip
Although I'm still away our overseas trip is coming to a close and I think it is safe to say that we all had a really great time. I really think it is amazing how much we managed to pack into our holiday and I have to say I'm looking forward to the end now and returning home. It is hard to believe that whilst I have been away I have surprised myself with what I have been able to accomplish.
I think that the first thing that has struck me is my stamina. I noticed this at my fellow CIDPer and HSCT recipient Bob's survivor party when I was able to stand for a long period of time without my stick and more incredibly not looking for a chair. Prior to my stem cell transplant the best I could have done would have been about ten minutes before I had to sit down. Now, just the simple act of standing does not bother me.
The second thing I noticed was my ability to walk long distances. In my travels we have visited Disneyland, Chicago, London and Paris and I have to say that without the use of a car we walked everywhere. I didn't manage to measure the lengths of my walks but if I was to hazard a guess I would probably say the the maximum distance would have been about 10 kilometres. I also managed to scale to the top of the Arc de Triomphe which would have been about 300 steps.
But probably my biggest success would have been in the re-ignation of an old time passion of mine. These days in the UK the country is slowly filling up with indoor ski slopes. Now it is no comparison to the lavish and vast ski slopes of Europe or America, but for someone in my position it was perfect. A gentle slope of about 200 metres. Certainly no where near the challenges I would confront myself with 15 years ago but under the circumstances, probably the most daunting skiing experience I have ever had.
Now I am not in the business of overcoming one medical issue (CIDP) and replacing it with another (like a broken leg). But it was on my to do list so I wanted to get it done. So off I went with my brother, an accomplished skier in his own right, to have a crack. I have to say the first couple of runs were really tough, but the return to form was quite successful and the improvement was substantial by the time our hour was out and it was time to be ushered off the snow. Saying that the standard I achieved was no where near where it used to be but there will be another time and who know where that will take me?
Anyway, tomorrow we return to Australia after a wonderful and successful trip. It will be good to be home and hopefully you will hear from me more often once I return. Until then, stay well:)
I think that the first thing that has struck me is my stamina. I noticed this at my fellow CIDPer and HSCT recipient Bob's survivor party when I was able to stand for a long period of time without my stick and more incredibly not looking for a chair. Prior to my stem cell transplant the best I could have done would have been about ten minutes before I had to sit down. Now, just the simple act of standing does not bother me.
The second thing I noticed was my ability to walk long distances. In my travels we have visited Disneyland, Chicago, London and Paris and I have to say that without the use of a car we walked everywhere. I didn't manage to measure the lengths of my walks but if I was to hazard a guess I would probably say the the maximum distance would have been about 10 kilometres. I also managed to scale to the top of the Arc de Triomphe which would have been about 300 steps.
But probably my biggest success would have been in the re-ignation of an old time passion of mine. These days in the UK the country is slowly filling up with indoor ski slopes. Now it is no comparison to the lavish and vast ski slopes of Europe or America, but for someone in my position it was perfect. A gentle slope of about 200 metres. Certainly no where near the challenges I would confront myself with 15 years ago but under the circumstances, probably the most daunting skiing experience I have ever had.
Now I am not in the business of overcoming one medical issue (CIDP) and replacing it with another (like a broken leg). But it was on my to do list so I wanted to get it done. So off I went with my brother, an accomplished skier in his own right, to have a crack. I have to say the first couple of runs were really tough, but the return to form was quite successful and the improvement was substantial by the time our hour was out and it was time to be ushered off the snow. Saying that the standard I achieved was no where near where it used to be but there will be another time and who know where that will take me?
Anyway, tomorrow we return to Australia after a wonderful and successful trip. It will be good to be home and hopefully you will hear from me more often once I return. Until then, stay well:)
Saturday, September 22, 2012
Back in Chitown
It is so nice to be here again, and this time without the daunting roadblock of a stem cell transplant to sour the mood. Actually in is completely different in every way. There will be appointments and tests, but there will be no nasty treatments and I'm looking forward to it as for once the I am expecting good news!
THe other big difference between this time and last time is that we have the kids with us. And what would a trip to the USA be without a trip to Disneyland? We all had a great time and I surprised myself by the amount of walking that I managed to do without getting tired. We nearly managed to do every ride in both parks. There is definitely something to be said about going outside of the US school holidays as queue times were down and the streets weren't so busy.
The highlight for me would of had to be radiator springs. It look just like the movie and you seriously would have thought you were there if it wasn't for all the people. I have to say that Disney Land is the best theme park I have ever been to and even after 57 years of operation. Disney, I take my hat off to you. But there was one thing that bugged me.
Now I expect this to be a little controversial, so here goes. First, I do believe that people have the right to choose their own lifestyle and eat what they like and indulge in their own vices etc. I also think that all people should have the right to medical attention whether they contribute to their condition or not. But it should not entitle you to more than anyone else.
So what happened? We were standing in the queue when two obese people, who would not have been older than 30 pulled up in their scooters, got off, entered through the exit gate jumping the queue and got straight on the ride. Now I'm all for these people being assisted, but when someone who clearly does not take care of themselves gets to jump the queue ahead of everyone else I think that is wrong. Did I also mention they stank of stale cigarette smoke? I know a heap of people that have been hit with a crippling disease simply because of bad luck and no fault of their own and almost feel too proud or guilty to jump the queue.
I feel that the queue jumping exception was created to help the unfortunate and others now simply take advantage of it. I'm reminded of an episode of the Simpsons where Homer puts on a pile of weight so he can claim disability and work from home exposing a loophole in the system. It also saddens me to see so many people with uncontrollable disabilities who try their absolute hardest to get better and can't. these other people don't seem to care and in fact are rewarded for their laziness.
However, like I said, it bugs me. Next time hopefully I will be reporting good news to you from my Chicago followup. Until then, stay well:)
THe other big difference between this time and last time is that we have the kids with us. And what would a trip to the USA be without a trip to Disneyland? We all had a great time and I surprised myself by the amount of walking that I managed to do without getting tired. We nearly managed to do every ride in both parks. There is definitely something to be said about going outside of the US school holidays as queue times were down and the streets weren't so busy.
The highlight for me would of had to be radiator springs. It look just like the movie and you seriously would have thought you were there if it wasn't for all the people. I have to say that Disney Land is the best theme park I have ever been to and even after 57 years of operation. Disney, I take my hat off to you. But there was one thing that bugged me.
Now I expect this to be a little controversial, so here goes. First, I do believe that people have the right to choose their own lifestyle and eat what they like and indulge in their own vices etc. I also think that all people should have the right to medical attention whether they contribute to their condition or not. But it should not entitle you to more than anyone else.
So what happened? We were standing in the queue when two obese people, who would not have been older than 30 pulled up in their scooters, got off, entered through the exit gate jumping the queue and got straight on the ride. Now I'm all for these people being assisted, but when someone who clearly does not take care of themselves gets to jump the queue ahead of everyone else I think that is wrong. Did I also mention they stank of stale cigarette smoke? I know a heap of people that have been hit with a crippling disease simply because of bad luck and no fault of their own and almost feel too proud or guilty to jump the queue.
I feel that the queue jumping exception was created to help the unfortunate and others now simply take advantage of it. I'm reminded of an episode of the Simpsons where Homer puts on a pile of weight so he can claim disability and work from home exposing a loophole in the system. It also saddens me to see so many people with uncontrollable disabilities who try their absolute hardest to get better and can't. these other people don't seem to care and in fact are rewarded for their laziness.
However, like I said, it bugs me. Next time hopefully I will be reporting good news to you from my Chicago followup. Until then, stay well:)
Monday, July 23, 2012
How did I do it?
First I just want to say that the amount of positive feedback I got on my last video post was amazing. Among all the feedback was a question about how did I do it? It is a great question because it is not nearly as simple as filling out a form and sending it in. The whole process from learning about the treatment to my transplant date was about nine months.
Firstly, I think it is important to acknowledge the work of Dr Burt and his team. Without his 20+ years of research this treatment probably wouldn't be available for patients with CIDP. Fortunately for me it is, and I benefitted significantly from this and also all the people who went through the procedure before me.
But where did I start? I first learnt about the procedure on an online forum for CIDP in July 2011. I was extremely enthusiastic about the treatment, but at the same time very cautious. In a way I was almost sceptical. I think this is a great attitude to have because there are many people selling nothing more than hope in empty barrels, especially when using a buzz word like 'stem cells'.
So I started research. I looked at the process and the theory behind the procedure. To me it made perfect sense so I moved onto checking the study to make sure it had been approved by the proper health authorities and ethics committees and complied with safety guidelines. Lastly, I checked the hospital, Dr Burt and the division of immunotherapy (DIAD). On all counts I was thoroughly impressed so I now had a bee in my bonnet. I wanted this done! I encourage everyone to do their own research. This is a super critical point that I believe everyone should do to benefit themselves. You are not doing it for anyone else, so you have to be comfortable about what you are signing up for. I really think that this is such an important step. I read the results received from other autoimmune diseases and spoke to other CIDPers who had been through the process. I plan to devote a section of my book to this topic when I finally have it finished it.
My next step was to contact DIAD to see if I would qualify for the trial. They had a list of requests as long as your arm which was fair enough. Medical history, CIDP history, medications etc... To get all this I had to talk to my doctor who was not nearly as enthusiastic so getting all this info would be tricky, so I got my GP to request all the files and then I sent them to Chicago. I was annoyed at the very cold reply from my neurologist because I had done my research, I had talked to a lot of people about it and nothing was going to stop me from being the master of my own destiny.
DIAD website
When they received the data they had two more requests. First, they wanted me to get some tests done and second, they wanted to know I could pay. All up the cost was about $135,000, not including travel, accommodation and other living expenses. There are a variety of options to get the money. US residents can orally get insurance to pay for a large portion of it, but living OS I had to front up 100% of the cash. Luckily for me I was able to do that.
After they received my results the asked me to come to Chicago for more tests and hopefully a transplant. I was booked in and given a timeline. I had to arrange all my own transport, accommodation etc, but it was worth it. Until next time, stay well:)
Firstly, I think it is important to acknowledge the work of Dr Burt and his team. Without his 20+ years of research this treatment probably wouldn't be available for patients with CIDP. Fortunately for me it is, and I benefitted significantly from this and also all the people who went through the procedure before me.
But where did I start? I first learnt about the procedure on an online forum for CIDP in July 2011. I was extremely enthusiastic about the treatment, but at the same time very cautious. In a way I was almost sceptical. I think this is a great attitude to have because there are many people selling nothing more than hope in empty barrels, especially when using a buzz word like 'stem cells'.
So I started research. I looked at the process and the theory behind the procedure. To me it made perfect sense so I moved onto checking the study to make sure it had been approved by the proper health authorities and ethics committees and complied with safety guidelines. Lastly, I checked the hospital, Dr Burt and the division of immunotherapy (DIAD). On all counts I was thoroughly impressed so I now had a bee in my bonnet. I wanted this done! I encourage everyone to do their own research. This is a super critical point that I believe everyone should do to benefit themselves. You are not doing it for anyone else, so you have to be comfortable about what you are signing up for. I really think that this is such an important step. I read the results received from other autoimmune diseases and spoke to other CIDPers who had been through the process. I plan to devote a section of my book to this topic when I finally have it finished it.
My next step was to contact DIAD to see if I would qualify for the trial. They had a list of requests as long as your arm which was fair enough. Medical history, CIDP history, medications etc... To get all this I had to talk to my doctor who was not nearly as enthusiastic so getting all this info would be tricky, so I got my GP to request all the files and then I sent them to Chicago. I was annoyed at the very cold reply from my neurologist because I had done my research, I had talked to a lot of people about it and nothing was going to stop me from being the master of my own destiny.
DIAD website
When they received the data they had two more requests. First, they wanted me to get some tests done and second, they wanted to know I could pay. All up the cost was about $135,000, not including travel, accommodation and other living expenses. There are a variety of options to get the money. US residents can orally get insurance to pay for a large portion of it, but living OS I had to front up 100% of the cash. Luckily for me I was able to do that.
After they received my results the asked me to come to Chicago for more tests and hopefully a transplant. I was booked in and given a timeline. I had to arrange all my own transport, accommodation etc, but it was worth it. Until next time, stay well:)
Tuesday, July 3, 2012
Thank You
Many people have sent me their congratulations about the treatment that I received in Chicago and also told me how strong and tenacious I've been. Personally I appreciate the accolades but I don't see it. I feel I have just done what I had to do to beat my disease. Because, let's face it, it's much easier to live without a disease than with it. So that being said maybe I took the easier option?
Anyway, whatever you want to call it, the truth is I could not have done it alone. So I have decided to give everyone who helped a long overdue thank you. There are many people so the question is where do I start? I will also apologise now if I forget anyone. So here goes.....
First, my medical team here in Australia that assisted me in getting everything ready to take to Chicago. There was a lot of preparatory work to do and I could not have done it all by myself.
My friends and family here in Australia who supported me before I left and helped keep my affairs in order and look after the kids while I was away. Especially the in-laws.
To all my friends in Chicago and the US (both old and new) who made my trip not just a little less lonely, but a lot less lonely.
The medical team in Chicago. From doctor Burt all the way down to the PCP's on the 19th floor. The care was fantastic.
To all my online friends that have wished me well and followed my blog, I have to say I have gained a world of strength knowing I have had so many in my corner.
Bob, Wendy and Cory who went through the process at the same time I did. Although I would not wish CIDP on anyone or see them need a stem cell transplant, it is nice to know you're not alone.
To my parents, without who's financial assistance none of this would have been possible.
My mother, who also spent a good deal of time with me whilst I was in hospital.
Lastly to my wife who also spent a good deal of time with me in Chicago and also put up with me during my recovery.
Stay well:)
Anyway, whatever you want to call it, the truth is I could not have done it alone. So I have decided to give everyone who helped a long overdue thank you. There are many people so the question is where do I start? I will also apologise now if I forget anyone. So here goes.....
First, my medical team here in Australia that assisted me in getting everything ready to take to Chicago. There was a lot of preparatory work to do and I could not have done it all by myself.
My friends and family here in Australia who supported me before I left and helped keep my affairs in order and look after the kids while I was away. Especially the in-laws.
To all my friends in Chicago and the US (both old and new) who made my trip not just a little less lonely, but a lot less lonely.
The medical team in Chicago. From doctor Burt all the way down to the PCP's on the 19th floor. The care was fantastic.
To all my online friends that have wished me well and followed my blog, I have to say I have gained a world of strength knowing I have had so many in my corner.
Bob, Wendy and Cory who went through the process at the same time I did. Although I would not wish CIDP on anyone or see them need a stem cell transplant, it is nice to know you're not alone.
To my parents, without who's financial assistance none of this would have been possible.
My mother, who also spent a good deal of time with me whilst I was in hospital.
Lastly to my wife who also spent a good deal of time with me in Chicago and also put up with me during my recovery.
Stay well:)
Wednesday, April 25, 2012
Adios Chicago
Thank you Chicago. I've had a great time here and I certainly have some memories that I won't forget in a hurry. I've met some wonderful people, eaten some great food and aside from my time in hospital, I've had some great experiences. But thankfully it's time to go home!
I'm going home. I'm going home.
I'm getting on the plane that will take me home.
I'm going back across the sea,
to the place where I can be.
Home, sweet home.
I'm going home. I'm going home.
I'm getting on the plane that will take me home.
I'm going back across the sea,
to the place where I can be.
Home, sweet home.
Sunday, April 15, 2012
Thanks for the shirt Bob
Thanks to Bob for getting these made up. The number 28 is my number in the CIDP transplant list.
Saturday, April 14, 2012
Day +2
Every day I'm feeling a little better and a little stronger. I'm still relying on the marinol for a little anti nausea and to give me a small feeling of appetite, but hopefully tomorrow that cease to be the case and I'll be able to eat unrestrained.
Interestingly enough, I don't think that in Australia they approve MMJ for medical purposes. Having only taken it in a hospital setting here in Chicago I really don't know why. I mean what I've gone through in the past week ain't fun, but the marinol has certainly made it easier. Provided it is administered properly, I don't have a problem with it at all. It is all to do with patient comfort.
As for my counts, well, they have started writing TLTC which stands for 'too low to count'. Normally counts rise by their own on day +8 to day +12 and that is the point they will let me out. Right now, we are just waiting and watching, but it is nice to feel through the worst of it. Until tomorrow, stay well:)
Interestingly enough, I don't think that in Australia they approve MMJ for medical purposes. Having only taken it in a hospital setting here in Chicago I really don't know why. I mean what I've gone through in the past week ain't fun, but the marinol has certainly made it easier. Provided it is administered properly, I don't have a problem with it at all. It is all to do with patient comfort.
As for my counts, well, they have started writing TLTC which stands for 'too low to count'. Normally counts rise by their own on day +8 to day +12 and that is the point they will let me out. Right now, we are just waiting and watching, but it is nice to feel through the worst of it. Until tomorrow, stay well:)
Friday, April 6, 2012
A change of pace
Two weeks ago I went to the art institute and walked back through millennium park so I thought I'd show you a few of the pictures I took. There is one Monet and an bunch of Picassos. Also there is a photo of the Silver Bean in Millennium Park and look, the daffodils are out in March! Stay well:)
Monday, March 26, 2012
When you're up you're up
Yes, just like the Grand Old Duke of aYork, "When they were up they were up" but on the same token "when they were down they were down". And at the moment, aside from losing my hair I feel really great. And honestly, I don't care about that. More than half the guys I know are experiencing some form of baldness as we all descend into middle age. So realistically I just feel like one of the lads. To the women I know that are going through (or have been through) this process I really admire the courage you have all displayed. I understand how much harder this must be for you all.
OK, so you probably want to know why I titled this post the way I have. Simply, right now I'm up. After chemo mobilisation I was down, but certainly not down and out. But while I'm up I am going to make the most of it. Right now I feel really great and with both my cystinuria and CIDP under control I feel like I need to get out there and live a little. After all, even though most people with cystinuria or CIDP (like me) have to organise their schedule around their doctors appointments etc... I still firmly believe that life is for living and while I am "up" I am going to make the most of it.
And I had a splendid day.
I am not telling you all this to gloat or be nasty. When you have a chronic disease you have to make the most of every good day you have and that is precisely what I intended. So in the morning I went to theArt Institute of Chicago. Where as most museums I have been to I have managed to crawl myself through at a snails pace the Art Institute not so.
I think of a scene in the movie "Pretty Woman", when Richard Gere is talking about opera where he basically says you love it or you don't. If you don't love it, you can grow to have a wonderful appreciation of it but you cannot ever love it.
Now, don't get me wrong I certainly enjoy art, and I truly appreciate the work and the meaning behind each piece. But if it doesn't tell me a story or I don't get it straight away I am not interested. To me each piece has to have meaning or tell me something I didn't already know. I guess that is why I love museums. To quote Spock from Star Trek, they are "fascinating". So although I breezed through the place much quicker than I expected I really did appreciate and enjoy it although I did not love it. My favourite exhibits would have been the indigenous American history artwork and the Picasso's they had on display.
After that I walked through Millennium Park which was right next door. I saw some street performance and the Silver Bean. Which is actually called Cloud Gate but all the native Chicago folk call it the Silver Bean. I do have pictures, but I can't be bothered to download them right now so I will share them with you next time. In the evening I went to the Ice Hockey to see the Black Hawks play. Unfortunately, the got hammered by the Nashville Predators 6 -1. But it was still fun and I had a good time, which brings me to now.
I do understand that my fun in Chicago will soon be coming to an end as I will be going in to North Western Hospital for my stem cell transplant in just over a week. But I don't live for my disease, I live for me and in the meantime I'm going to make every good day count. Stay well:)
OK, so you probably want to know why I titled this post the way I have. Simply, right now I'm up. After chemo mobilisation I was down, but certainly not down and out. But while I'm up I am going to make the most of it. Right now I feel really great and with both my cystinuria and CIDP under control I feel like I need to get out there and live a little. After all, even though most people with cystinuria or CIDP (like me) have to organise their schedule around their doctors appointments etc... I still firmly believe that life is for living and while I am "up" I am going to make the most of it.
And I had a splendid day.
I am not telling you all this to gloat or be nasty. When you have a chronic disease you have to make the most of every good day you have and that is precisely what I intended. So in the morning I went to theArt Institute of Chicago. Where as most museums I have been to I have managed to crawl myself through at a snails pace the Art Institute not so.
I think of a scene in the movie "Pretty Woman", when Richard Gere is talking about opera where he basically says you love it or you don't. If you don't love it, you can grow to have a wonderful appreciation of it but you cannot ever love it.
Now, don't get me wrong I certainly enjoy art, and I truly appreciate the work and the meaning behind each piece. But if it doesn't tell me a story or I don't get it straight away I am not interested. To me each piece has to have meaning or tell me something I didn't already know. I guess that is why I love museums. To quote Spock from Star Trek, they are "fascinating". So although I breezed through the place much quicker than I expected I really did appreciate and enjoy it although I did not love it. My favourite exhibits would have been the indigenous American history artwork and the Picasso's they had on display.
After that I walked through Millennium Park which was right next door. I saw some street performance and the Silver Bean. Which is actually called Cloud Gate but all the native Chicago folk call it the Silver Bean. I do have pictures, but I can't be bothered to download them right now so I will share them with you next time. In the evening I went to the Ice Hockey to see the Black Hawks play. Unfortunately, the got hammered by the Nashville Predators 6 -1. But it was still fun and I had a good time, which brings me to now.
I do understand that my fun in Chicago will soon be coming to an end as I will be going in to North Western Hospital for my stem cell transplant in just over a week. But I don't live for my disease, I live for me and in the meantime I'm going to make every good day count. Stay well:)
Sunday, March 25, 2012
Back to MSI
I had such a good time the last time I went to the Museum of Science and Industry that I decided to go back. This time I went with my parents which was both good and bad. To start with, things like this are better when you go with someone, but on the other hand I am a bit of a geek and I move a fair bit slower through a museum than most people that I know. And not because of my medical impairment, but because I like to read all the literature provided with all the exhibits, but it means that I take my time.
I did have a mission whilst I was there. And that was mainly to re-experience the U505 submarine and its exhibit once again. The first time that I saw it I had a hurry through the sec on part of the exhibit. This time I had plenty of time and I also bought a ticket to experience the inside of the submarine. I was inspired by my first visit, this time I wanted to leave no stone unturned. I was on a mission to see everything. To read everything. To learn everything. I found the whole story of the battle in the Atlantic extremely compelling as well as the specific story behind U505.
The following video I took at the exhibit. Although the submarine looks pretty big on the outside, believe me, with 59 people on board it would have been extremely cramped. The junior sailors didn't even get their own bed and a sleep rotation system had to be employed. Also most of the crew would not have been allowed 'topside' for the voyage which could last up to six months and there were no showers. Could you imagine the smell? Here is the video:-
I also have some pictures of the exhibit. I have no pictures or video of the inside because we were not allowed to take any. Here are the pictures:-
I guess the only thing left to say is if you like museums and you are in Chicago, MSI is a must. This and the space exhibit are my two favourite exhibits, but I have to say, they are all fantastic. Until next time, stay well:)
I did have a mission whilst I was there. And that was mainly to re-experience the U505 submarine and its exhibit once again. The first time that I saw it I had a hurry through the sec on part of the exhibit. This time I had plenty of time and I also bought a ticket to experience the inside of the submarine. I was inspired by my first visit, this time I wanted to leave no stone unturned. I was on a mission to see everything. To read everything. To learn everything. I found the whole story of the battle in the Atlantic extremely compelling as well as the specific story behind U505.
The following video I took at the exhibit. Although the submarine looks pretty big on the outside, believe me, with 59 people on board it would have been extremely cramped. The junior sailors didn't even get their own bed and a sleep rotation system had to be employed. Also most of the crew would not have been allowed 'topside' for the voyage which could last up to six months and there were no showers. Could you imagine the smell? Here is the video:-
I also have some pictures of the exhibit. I have no pictures or video of the inside because we were not allowed to take any. Here are the pictures:-
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| Not a great picture, but these were the hedgehogs and depth chargers. Hedgehogs only exploded when they hit something making a spread of them ideal for locating a hidden U boat. Depth chargers exploded at a certain depth. As long as they exploded near the U boat they could inflict substantial damage. |
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| The stern of the ship with the rudders, propellers and the aft torpedo tube |
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| Guns for when the submarine had surfaced |
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| Torpedo. Much bigger than I imagined |
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| Forward torpedo tube |
I guess the only thing left to say is if you like museums and you are in Chicago, MSI is a must. This and the space exhibit are my two favourite exhibits, but I have to say, they are all fantastic. Until next time, stay well:)
Monday, March 19, 2012
St Patricks Day
Q. What's a mile long and has an IQ of 50?
A. The St Patricks Day parade;)
St Patricks day in Chicago is huge. Yesterday was massively busy, there were people everywhere in a sea of green, metaphorically. But there was nothing metaphoric about the river of green.
I wish I had more time to roam the city but after harvesting the day before I was pretty tired. Until next time, stay well:)
A. The St Patricks Day parade;)
St Patricks day in Chicago is huge. Yesterday was massively busy, there were people everywhere in a sea of green, metaphorically. But there was nothing metaphoric about the river of green.
I wish I had more time to roam the city but after harvesting the day before I was pretty tired. Until next time, stay well:)
Wednesday, March 14, 2012
I'm tearing my hair out
I have been advised to stay away from sick people and crowded public spaces for the start of this week as my immune system will be at its lowest after mobilisation. And yeah, I'm tearing my hair out. I've thought about what I could do, and I thought I could spend time on my blog but it's funny how time does not increase inspiration because as much as I have wanted to write I've got nothing. Seriously, the best I can come up with is to write about being bored.
It is funny, I really think that I wouldn't be bored if the good people at the hospital hadn't said anything and I just decided to mope around the hotel room of my own volition. It's like when they tell you you are not aloud to eat anything after midnight it's a sure fire way to make sure you will feel hungry at breakfast time when every other day I can go without breakfast quite happily.
So, Monday morning my mother escorted me to the hospital to have blood work done. I'm not sure if I had been lucky up until now or if I just caught them on a busy day but this was the first time I had any real wait. It took over 40 minutes to get into the lab to finally have my labs drawn, but I didn't mind. In Australia I have had to wait over two hours before and it's not like I had somewhere else to be. After the labs I started to feel a little tired again so we went and got a coffee before we took a cab home. I assume all the tests came back good because I haven't heard back from them.
Other than that I have started getting a tidy little morning routine together. I wake up at 7.00am and meet my mother in the kitchenette where I get my daily dose of neupogen. I also have my antibiotic which has to be taken on an empty stomach before returning to bed for an extra little nap before I wake for breakfast and the remainder of my pharmaceutical cocktail.
On my naughty notes, I haven't strictly followed doctors orders precisely. Before I bored myself to death I had to get out. So I decided a nice little trip to the movies where I could sit in the corner away from other potentially diseased individuals and be entertained. We went and saw 'Act of Valour'. If you like action movies I'd wait for the DVD, if you don't like action movies I wouldn't bother. And today I went out for lunch to somewhere quiet. We also stopped off to look for a present for my daughter at American Girl. Wow, that store is something else. My daughter would be in heaven but me I felt like a fish not just out of water but in the middle of the Sahara.
On the plus side apart from some mild, intermittent fatigue I have felt really good. The most common side effect of neupogen is bone pain and I have had none of that. Well that is it for me for today, I will post again tomorrow. Until then, stay well:)
It is funny, I really think that I wouldn't be bored if the good people at the hospital hadn't said anything and I just decided to mope around the hotel room of my own volition. It's like when they tell you you are not aloud to eat anything after midnight it's a sure fire way to make sure you will feel hungry at breakfast time when every other day I can go without breakfast quite happily.
So, Monday morning my mother escorted me to the hospital to have blood work done. I'm not sure if I had been lucky up until now or if I just caught them on a busy day but this was the first time I had any real wait. It took over 40 minutes to get into the lab to finally have my labs drawn, but I didn't mind. In Australia I have had to wait over two hours before and it's not like I had somewhere else to be. After the labs I started to feel a little tired again so we went and got a coffee before we took a cab home. I assume all the tests came back good because I haven't heard back from them.
Other than that I have started getting a tidy little morning routine together. I wake up at 7.00am and meet my mother in the kitchenette where I get my daily dose of neupogen. I also have my antibiotic which has to be taken on an empty stomach before returning to bed for an extra little nap before I wake for breakfast and the remainder of my pharmaceutical cocktail.
On my naughty notes, I haven't strictly followed doctors orders precisely. Before I bored myself to death I had to get out. So I decided a nice little trip to the movies where I could sit in the corner away from other potentially diseased individuals and be entertained. We went and saw 'Act of Valour'. If you like action movies I'd wait for the DVD, if you don't like action movies I wouldn't bother. And today I went out for lunch to somewhere quiet. We also stopped off to look for a present for my daughter at American Girl. Wow, that store is something else. My daughter would be in heaven but me I felt like a fish not just out of water but in the middle of the Sahara.
On the plus side apart from some mild, intermittent fatigue I have felt really good. The most common side effect of neupogen is bone pain and I have had none of that. Well that is it for me for today, I will post again tomorrow. Until then, stay well:)
Sunday, March 11, 2012
A day with my Wife
I meant to post about this earlier. Before I had mobilisation I spent a day in Chicago with my wife. We had a wonderful day and here are some of the pictures we have of that day. Stay well:)
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| Suzie at Navy Pier |
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| The Original Ferris Wheel |
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| Suzie a top the John Hancock Building |
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| Can you believe she locked me out on the window cleaning ledge |
What Difference a Day Can Make
I don't want to try and make a big deal about how bad I felt yesterday and the day before because I really didn't feel that bad. Just tired and a little yucky. My energy levels were way down but I felt very comfortable and perfectly fine sprawled out on the couch sleeping and watching TV. My choice to be a little proactive was probably the wrong one but hey, I still managed to get plenty of rest and on the plus side, today I felt great.
I decided to have a small breakfast as I seem to feel a little better just after I eat, but I didn't want too much to eat as we were going out for brunch later. And that is what I did. I surprised myself too. We went to a great little place about four blocks from the hotel and I managed to walk the whole way without even feeling a little tired. I managed to eat all my brunch and I have gone the whole day without felling any nausea or fatigue.
It is quite a relief. Although I want to stress that it really wasn't that bad, I also was not relishing the possibility that yesterday was the best I was going to feel between now and my transplant day. Luckily for me it wasn't. So today I got back on board the tourist band wagon.
With my parents for company, my friend from DC and her sister, cousins and sister's boyfriend we headed down south to visit the Robie House, located on the grounds of the University of Chicago. It was a stunning piece of architecture, designed by Frank Lloyd Wright who really set a new bench mark for the style of American architecture.
After that we did a mini driving tour of Chicago and saw some of the other marvellous Chicago land marks including Barack Obama's house. Tonight we are off to dinner again, which I am looking forward to. Until next time, stay well:)
I decided to have a small breakfast as I seem to feel a little better just after I eat, but I didn't want too much to eat as we were going out for brunch later. And that is what I did. I surprised myself too. We went to a great little place about four blocks from the hotel and I managed to walk the whole way without even feeling a little tired. I managed to eat all my brunch and I have gone the whole day without felling any nausea or fatigue.
It is quite a relief. Although I want to stress that it really wasn't that bad, I also was not relishing the possibility that yesterday was the best I was going to feel between now and my transplant day. Luckily for me it wasn't. So today I got back on board the tourist band wagon.
With my parents for company, my friend from DC and her sister, cousins and sister's boyfriend we headed down south to visit the Robie House, located on the grounds of the University of Chicago. It was a stunning piece of architecture, designed by Frank Lloyd Wright who really set a new bench mark for the style of American architecture.
After that we did a mini driving tour of Chicago and saw some of the other marvellous Chicago land marks including Barack Obama's house. Tonight we are off to dinner again, which I am looking forward to. Until next time, stay well:)
Monday, March 5, 2012
Museum Pictures
In my post about the science and industry museum I talked about how visually stunning all the museum's were. So, I thought I'd show you some pictures. I cannot take credit for taking these myself, I ripped them off google images. Stay well:)
Science and Industry Museum
Field Museum
Adler Planetarium
I am not alone
Not alone. It sounds like something from an x-files episode, but it isn't. It is much simpler than that. After two weeks of being in Chicago by myself I have finally been joined by my wife. And not a moment too soon either. On Tuesday I start the treatment proper. No more doctors appointments, no more tests or uncomfortable procedures. Tuesday is the beginning of mobilisation. An overnight stay in hospital where I will receive one dose of chemotherapy in order to stimulate my stem cell production so when it comes time for harvesting I will have plenty of stem cells to collect.
But on the plus side I am not alone anymore. Having my wife here is awesome. It is great to have someone here to share things with, someone to talk to and someone for support. I will probably need the help after mobilisation so it will be great having her here. Between now and then I have two days with my wife in which we can share the delights of Chicago together.
So what to do? My wife loves shopping and she doesn't really share my fascination with space and space flight. If we were here together the whole time she would have let me indulge my passion but since we only have two days I will probably have to switch the Adler Planetarium for Macys. I am also thinking that the Art gallery might also be a good location. I hear they have a stunning collection of Van Goughs.
Well, I will tell you what we have done once we have done it. Until then, stay well:)
But on the plus side I am not alone anymore. Having my wife here is awesome. It is great to have someone here to share things with, someone to talk to and someone for support. I will probably need the help after mobilisation so it will be great having her here. Between now and then I have two days with my wife in which we can share the delights of Chicago together.
So what to do? My wife loves shopping and she doesn't really share my fascination with space and space flight. If we were here together the whole time she would have let me indulge my passion but since we only have two days I will probably have to switch the Adler Planetarium for Macys. I am also thinking that the Art gallery might also be a good location. I hear they have a stunning collection of Van Goughs.
Well, I will tell you what we have done once we have done it. Until then, stay well:)
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