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:)

Science and Industry Museum

One thing I love about the museums here in Chicago is the way they look from the outside.  The Adler Planetarium was an awesome dome shaped building out on a spit into lake Michigan.  The Field Museum and the Science and Industry Museum are both large magnificent looking building that truly look majestic in nature, made of a beautiful sandstone with large pillars out the front.  It is exactly what one would expect a museum to look like.  All three of them fit right in with the wonderful architecture that this city has to offer.

But today I am talking about the museum of science and industry.  It did not disappoint.  As far as my museum experiences go here in Chicago I am now shooting three for three.  Again, the biggest problem that I had was time.  There was way too much to see in one day so I think that I will have to go back to finish off seeing all the exhibits.

When I went to the Field Museum I made the mistake of paying for the extra exhibits, this time I did not and I wished I had.  One of the most fantastic exhibits I have ever seen in any museum anywhere was the exhibit of submarine U505.  The exhibit told a story that was both engaging and educational.  It was brilliantly displayed with all kind of different ways of displaying the material.  It really was a treat.  Unfortunately if you wanted to go inside the submarine that cost extra, but by the time I was there I really wanted to go inside.

The other funny thing was that it said I should give half an hour for the exhibit.  I had an hour and twenty minutes until I was due at the auditorium to watch storm chasers and I ran out of time.  It was that good.  If I manage to get back I will take another look and take the tour inside the submarine.

As I just said, after the submarine I went to see storm chasers at the auditorium.  The auditorium was one of these massive dome shaped screens.  It wasn't 3D, but you felt surrounded by the screen which was extremely effective.  The movie was quite spectacular too.  Some of the footage they got was quite spectacular.

After the movie was over I some how ended up in the space exhibit if you can believe that.  They had great displays from the early pioneers of the space program right through to the future of space travel.  I got lost in that one for over an hour too.  After that I had time for a couple of the more minor exhibits and then it was time to go.  I will have more for you from Andy and his wonderful Chicago adventure tomorrow.  Until then, stay well:)

Proactive

Dr Burt is a hard man to tie down just to chew the fat about stuff.  He is always on the go and busy as a man can be.  So when I had my bone marrow biopsy done I decided that it was a good time to tie him down and ask a him a couple of questions.  After all it is not like he could just up and leave half way through performing a medical procedure.

Now I have a list of questions as long as your arm for Dr Burt, but I thought I would just start with one of them as time was of the essence and it is easy to be distracted when you have someone drilling a hole in your butt.

So what was my first question?  Before I tell you I think it best to set a bit of a background as to how I got to want to ask this.  If you hadn't noticed I have blogged a lot recently about Rare Diseases and the Global Genes Project.  There are so many rare diseases out there that are severely debilitating and life changing.  Now I have two of them, but I feel that there are others out there that also suffer and there is very little out there to help them.  Now I want to help and I feel I might have found a way to help a few.  Now there are over 7000 rare diseases and I don't ever expect to be able to help all of them, but I do think there I might be able to help some and you've got to start somewhere right?

Enter Dr Burt.  His programs helps people with all kinds of autoimmune diseases and I am lucky enough to make it onto his CIDP program.  Now one of the issues that faces Dr Burt is that although the treatment is the similar for all autoimmune disorders, each disease needs its own protocol and each disease needs its own FDA approval to make it to trial.  That is a lot of work, needless bureaucracy and paperwork.

Now I felt that some people were missing out on getting in on a trial because they had a really rare disease that was autoimmune in nature but so rare it did not make it onto the protocol.  So I talked to Dr Burt about protocols for the really rare autoimmune diseases and in our short discussion we came up with idea of having one protocol for all the extremely super rare autoimmune diseases.  Independently, these diseases are too obscure for any real research into treatment options, but together, they could gain admittance onto Dr Burt's trial and potentially give them a treatment that could make a real difference in their lives.

I am a big fan of what Dr Burt has done/is doing.  Results so far have been impressive, and the more diseases that can be covered by his study and the more people that enter the study under all protocols, the faster they can get this treatment to be a part of mainstream medicine the better for all sufferers.  So in order to help Dr Burt I said I would compile a list of rare autoimmune diseases for him so he could get a start on it.

Now of course not every autoimmune disease can qualify.  If there is too much evidence that the disease is not autoimmune or the disease is not aggressive enough, it might not qualify.  But that is not for me or you to decide,  Dr Burt and his team, the ethics committee at North Western University and the FDA will make that decision.  But in order to put this list together I need your help.  The nature of a rare disease means that I probably haven't heard of it, so if you or someone you know suffers from an autoimmune disease please let me know what it is by leaving a comment on this post.

Please do not leave a message for me if your disease is on one of the lists below (If it is your disease is already on my radar) or your disease is not autoimmune or suspected to be autoimmune.  The lists are as follows:-

Diseases already covered by Dr Burt's trial-

1. Antiphospholipid Syndrome
2. Autoimmune Bullous Skin Disorders
3. Autoimmune-Relared Retinopaty
4. CIDP
5. Crohn's Disease
6. Devic's Disease
7. Idiopathic Inflammatory Myopathy Diseases
8. Leukocyte Adhesion Deficiency Type 1
9. Morphea
10. Multiple Sclerosis
11. Myasthenia Gravis
12. Optic Neuropathy
13. Primary Biliary Cirrhosis
14. Pulmonary Fibrosis
15. Rheumatoid Arthritis
16. Sarcoidosis
17. Scleroderma
18. Systemic Lupus Erythematosus
19. Systemic Necrotizing Vasculitis
20. Type 1 Diabetes
21. Critical Limb Ischemia

Other Autoimmune Diseases (courtesy of CIDPUSA)

1. Acute disseminated encephalomyelitis (ADEM) 
2. Alzheimers 
3. Alopecia areata
4. Ankylosing spondylitis
5. Aneurysms 
6. Arthritis
7. Antiphospholipid Syndrome  
8. Addison’s Disease
9. Autoimmune polyendocrinopathy
10. Hemolytic Anemia 
11. Inner Ear Disease 
12. Lymphoproliferative  Syndrome (ALPS)
13. Thrombocytopenic Purpura (ATP)
14. Autism or Autistic disorder 
15. Hemolytic anemia
16. Hepatitis
17. Oophoritis
18. Behçet's disease
19. Bullous Pemphigoid
20. Cardiomyopathy
21. Crohn's disease
22. Chronic Fatigue Syndrome
23. Dermatomyositis
24. Diabetes mellitus, type 1
25. Epilepsy Autoimmune
26. Kawasaki's Disease
27. Glomerulonephritis
28. Graves' disease
29. Goodpasture's syndrome
30. Guillain-Barré syndrome
31. Inflammatory bowel disease
32. Lupus nephritis
33. Multiple sclerosis
34. Myasthenia gravis
35. Myocarditis
36. Parkinson diseases
37. PANDAS
38. Pemphigus/pemphigoid
39. Pernicious anemia
40. Polyarteritis nodosa
41. Polymyositis
42. Primary biliary cirrhosis
43. Psoriasis
44. Relapsing Polychondritis
45. Rheumatic fever
46. Rheumatoid arthritis
47. Sarcoidosis
48. Scleroderma
49. Sjögren's syndrome
50. Systemic lupus erythematosus
51. Thyroiditis
52. Ulcerative colitis
53. Uveitis
54. Vitiligo
55. Wegener's granulomatosis
56. Wilsons Disease

The following links may be useful to you:-

www.cidpusa.org

www.stemcell-immunotherapy.org

http://www.clinicaltrials.gov

The Field Museum

Before I tell you about the Field Museum which I visited yesterday I just want to tell you something of a more personal nature.  Tomorrow I will be joined by my wife for a week.  And I am really looking forward to it.  Sure these days you are never quite as alone given the communication tools available (Skype, FaceTime, etc) but you still can't beat that personal contact.  I have missed my wife and I have missed my family and having my wife here will be very comforting.  However, there is a downside.  Never have both my wife and I been away from our kids for this length of time and when we have we have never been more than a couple of hours drive away.  I understand that I have to do this, but I do feel guilty dragging my wife half way across the planet and away from the people that need her most just to be with me.

Well now onto the Field Museum.  As far as Chicago museums go I'm batting 2 for 2 now.  All the exhibits were great.  The only problem was there was not enough hours in the day and I only got to see about a third of the place.  But, if the remaining two thirds are as good as the first I am in for a real treat if I go back.

I did make one mistake however.  I decided to pay a little extra to see the Mummy and Genghis Kahn exhibits and although they were both fantastic, educational and informative I could have spent more time in other exhibits that were just as good and required no extra funding.  I have to say I loved the exhibit on the Native American Indians.  If you're going to learn about that it is always best to go straight to the source.  And there would be nowhere closer to the source than the heartland of the American mid-west.

In all, it was a fantastic museum and I thoroughly enjoyed my visit.  Tomorrow I will tell you about the visit I had to the science and industry museum.  Until then, stay well:)

On top of the world

At the top of the Sears Tower.  Stay well:)

It keeps rolling on...

After I had my biopsy I actually felt quite tense, a little anxious and a little flustered.  I thought that going back to the hotel would not be the smartest idea as sitting down and doing nothing would merely intensify my negative emotions as I would have plenty of time to ponder the procedure.  Instead I decided to distract myself by ascending the Sears Tower (ST).  Sorry, the Willis Tower.  Oh who cares, whatever it's called if you take my advice you'll go no where near it.

Yes, I was severely disappointed.  If you visit Chitown and have a hankering to scale a tall building may I suggest the John Hancock building (JH).  I will elaborate:-

1. The only win for ST is it's higher.
2. Elevators. JH has the fastest lifts in the northern hemisphere.  The express elevators in the ST were broken.  The trip to the top was three lifts.  If felt like someone promising you a ride in an Astin Martin DB9 and then turning up in a Toyota Kluger.
3. The view is better from the JH.  It is on the peripheral of the city so you can see the whole city, it is also closer to the water so you get better lake views too.
4. JH has a coffee shop and bar at the top.  ST does not.
5. JH had better off window displays.
6. JH had an informative and interesting audio tour even if it was by David Schwimmer.  ST did not.
7. ST did have the glass floor experience, but the JH had an outside area so you could really experience the height of the tower.

Now my experience may have been skewed because I had only two hours before had a stick in my arse.  But even in hindsight, the JH was way better.  After I finally descended the structure I sat down for a well earned coffee before I caught up with friends where we had dinner at the Bedford Bar, which was very nice.  Then we went and watched some country and western music.  Normally I am not a fan of C and W, but here they just do it so much better.  The musicians were extremely talented.

On another note, I got the results of my bone marrow test and they were all good, so I don't have cancer and I am all go for next tuesday.  Next time I will post my pictures atop the ST, until then, stay well:)

Biopsy

I tried to take video of my biopsy, but it didn't come out right so you're just going to have to take my written summation of events.  As with most medical procedures I have I like to do my research before I go in.  This time, I wished I hadn't.  I decided to watch the procedure on youtube the night before which was a mistake as it meant I got a first hand glimpse of the terrifyingly large needle they used to take the biopsy and also the patient that they videoed did an awful lot of whining.  Needless to say my mindset was skewed negative before I had even started.

My biopsy had been booked in for 12.30 but they wanted me to get there half an hour early for preparation.  Paula arrived first, then Dr Burt followed by the pathology nurse.  They had me take off my shoes and jeans then lie down on the treatment table.  The first thing that they did was put in some local anaesthetic which was good as the thought of having someone drill out a portion of my bone without would be quite painful.

After the anaesthetic had been administered Dr Burt checked the area to make sure the area was suitably numbed and then he did it.  He shoved a big stick in my arse.  It wasn't so much painful as uncomfortable and as happens many times when I have procedures like this, I started to sweat.  And not just normal sweats, big time sweats that I could feel running down my forehead.

The first thing they did was drain some of the fluid out of my bone marrow followed by the main event where he took a chunk of my bone out.  It didn't hurt much at all.  The most unsettling thing was the scratching sensation.  I didn't like that at all.  It was almost like the grinding of teeth.

And that was pretty much it.  All the needles were removed, gauze was placed on the needle sight and then I was made to sit on my butt for ten minutes as a way to apply pressure.  They fetched me a glass of water, and finally I was allowed to go.  Now the procedure was not as bad as I had first imagined, but you certainly wouldn't do it for fun.  A day later I would be lying if I said my bum was not sore, but all I have to show for it is a little red dot.  I have to go back to the hospital today for more blood work and it will be a cab ride.  I certainly do not feel up to walking that far.  Until next time, stay well:)