Organs on a heavy night in! (At least I hope some of these are staying in!)
Before making the decision I tested out my theory that running makes my spleen hurt.
I didn’t run for a while = no pain.
Then 2 runs = pain.
Sadly this felt pretty conclusive
On the other hand without a spleen I would be more at risk when I go to malarial zones and various other exotic and exciting, but mildly dangerous places. Quite a bit more at risk according to the second doctor. I also love travelling. Meeting new people, experiencing new things, really finding out how different things are in other places. Soaking up the culture and the cuisine.
So it was one or the other.
I also had the poll which people voted on.
As of today the results are 21 to take it out and 18 to keep it in. With 39 votes its so close to even that it really wasn’t much of a steer!
After some though I have come to the following conclusion.
…………………………………….My Spleen stays in……………………………………..
(I may have given this away with the picture on the blog post, Thank you again for the art work Mark Foster, legend!).
The caveat to this is if it starts to hurt more, or if it hurts even without running then I will reconsider. But for now, leave it in. Then if it gets worse I can always whip it out later.
It feels better to have finally made a decision.
………
In other news I am now talking to three or four other sufferers from SMZl and my guest post has also had a couple of responses. All in all very positive. Please continue to share this and if you want to know when I put a new one post out you can get notifications on the top left by putting your email in!
In my next post I will talk more about the chemo option, something to be considered sooner or later!
Until then, keep well everyone!
spleniclymphoma 
Keep up the good work. Good luck.
Hi Marcus:
I just started following you blog as I have just been diagnosed with SMZL and I am like you young guy only 32 years old. Would love to talk more I don’t know if this is the correct place. Many greeting from the States my name is jorge I wish you a long watch and wait!
Hi Jorge. Still on watch and wait thankfully, over 4 years and counting. Sorry to hear that, if you want to chat please send me your email address and I’ll drop you an email to chat further if you like?
Hey Marcus would love to talk this is my email. jetrueba2004@yahoo.com
Hi. I am following your blog with interest as my mother in law has just been diagnosed with SMZL last week. She is in the UK too ( we are In Australia). They are having a MDT next week to work out the way forward her. I don’t think a splenectomy will be an option for her. She has a low grade but we don’t know too much more then. She is 80. Keep well and enjoy your travels!
Hi Marcus,
You should give my friend Sam Judah a call. He is a life coach, healer & hypnotherapist.
He works closely with The Lightning Process – which is a technique that gives you control over unconscious automatic thought patterns and behaviours. It links up the body & mind.
You don’t have to commit to anything. Just call him for a friendly chat.
He is one of those people who has a great patter & it is very relaxing talking to him.
His website is http://www.neurologicapractice.com
Hi Marcus,
Speaking of Sam at Neurologica – I just found out he is having a Free taster evening on the Lightning Process next Tuesday in Clerkenwell at 7pm.
I will be attending with my girlfriend & I think some of my friends may come.
Here’s the link. Hope you can make it.
Regards,
Charlie
https://www.facebook.com/events/1415774448636166
Marcus,
Thank you so much for taking the time to reply. I haven’t been too successful in navigating all around the site, so the links you included helped tremendously. I plan to have a chat with my doctor this upcoming Monday. I am inclined to keep my spleen, at least for a bit. As in your case, doctor is ‘quite’ sure it is SMZL, but as noted by you and others, it is rare and diagnostic mistakes are rare. And yes, if the bad boy goes it’s not coming back (the spleen, not the cancer). In fact, I believe SMZL is controllable, maybe, but not curable. Doctor says because mine is in my bone marrow and my blood the spleen should go. No involved lymph nodes. I say it should stay a while because I am not in pain and spleen is not giant (and, there is the understanding I could have had this for some time; the tumbling blood counts indicated some kind of new emergence).
The Rituximab was not really that difficult to tolerate, but alas, was not my magic bullet. And yes, the $$$$ is a huge factor in US medicine. Should I post this one the site for others? I hope to have more answers next week. And I did enjoy the art – I have little idea what my spleen looks like.
What symptoms did you have prior to diagnosis? Acquired angioedema? Trying to research in anticipation of test results. Thank you! Appreciate all the information you’ve posted!
Hi Erin,.just tiredness really on my part. Hope the test results were ok, how did it work out?