Starting a blog for those that are interested in my journey through this Thymoma thing.  The quote I put on my 'introduction' makes me roll my eyes because my Thymoma has not only spread to the lining around my right lung but also to my bones.  But I laugh anytime I see the word 'rare' associated with some disease or syndrome or something I've been diagnosed with. Yes I am one of those Rare ones.  :)

I learned Thursday that the tumor in my L3 vertrebre has grown.  Chemotherapy treatments worked on the tumors in my chest.  That big one around my superior vena cava and my carotid artery. You know the one pressing on my heart and on my trachea and making it difficult to swallow? That one has shrunk.   The one in my lower back in the bone that is causing pain-pain-pain has not.  It’s difficult to stand for longer than a few moments.  Walking is not as bad and I can actually walk down a hallway or from the parking lot to a store’s entrance.  Then I grab a scooter with a big basket provided by the store and drive myself around.  Have you noticed those?  I never did until now when I need one.  Seems like all the grocery stores have one or more around – nice perk!


I also learned that I was very low on the red blood cells AGAIN. It may be the aggressiveness of this tumor that is causing my bone marrow not to regenerate the red blood cells I need.  I was having some symptoms and the lab test showed I was critically low in red blood cells again Thursday.  Well how frustrating is that? Ugh! It has only been two weeks since the previous transfusion of whole red blood.  Uh-oh,  is this going to be a bi-weekly thing?  For how long? 

Another cause of the anemia may be a thing called Pure Red Cell Aplasia.  It is associated with Thymomas and is thought to be an autoimmune disorder.  So Dr Sharman is doing some more tests on my blood and I go back to see him next week to see if we have a cause for the anemia.

Friday I went to see Dr Mones for the first time.  He is a primary care doctor but he also specializes in Palliative/Hospice care.  He’s a pretty young guy, or at least he looks young, and we spent more than two hours talking and making a plan for my pain control!  So I am set up with a nerve pain medication now.  Both doctors think my pain is from the tumor pressing on a nerve.  Also,  Dr Mones has me taking steroids for the inflammation around that nerve and last but not least Methadone for pain!  We’re adding that slowly and I don’t start the Methadone until Monday.  But already I’m feeling better because there is a plan and someone to walk me through this pain control thing. I also learned from Dr Mones that the tumor has not just grown, it's doubled in size.  

Palliative care doesn’t mean you’re automatically on Hospice care.  Palliative care is also for people who are still getting treatment for their disease. Like chemotherapy or Blood Infusions.  Dr Sharman has me seeing a Radiation Oncologist next to see if they think its possible to use more radiation on the tumor.   I guess it’s a fine balance between damaging the tumor and damaging my spine.  Radiation could also help with pain control and could be just one or two sessions.  Oh boy,  I was so sick during radiation I’m not sure that is a route I want to take again.  Talking myself into it – just one or two times would be okay, just one or two times would be okay.  Just pre-medicate heavily in advance…

Well this is probably enough for my first post!  I want to let you know I am open to any and all questions so if you have any please don't be shy about asking. Oh, and suggestions about how to do this blogging thing.  I appreciate the support from my friends and family Very Much.