Level setting

I'm afraid this blog is going to start by talking about my current health struggles.  So let's bring everyone up to speed.  If you already feel speedy, you can skip this post.

I was first diagnosed with Non Hodgkins Lymphoma September 12, 2003.  I learned it was mostly "small cell" grade 1 which means it is slow growing.  I had a series of 8 Rituxan treatments which put me in remission for 18 months.  At that point, I noticed a lump in my left eyebrow and along my left side of my jaw bone.  Again, we did 8 rounds of Rituxan.  That did the trick once again.

During those treatments, I found I had weakness that took quite a few years to figure out why.  After several miserable tests and tons of doctor appointments, I found out I had Polymyositis.  This is a rare auto-immune disease.  I begged for help and was so thankful when I was given high dose Prednisone.  Not that I wanted the side effects but I was just...that....bad.  After Prednisone leveled things off, we added Methotrexate and I started tapering Prednisone.  After 5.5 long years I was finally off Prednisone.  I still do self injections of Methotrexate weekly.  My last dose of Prednisone was 12/10/12.

We knew all along that my medications seemed to be keeping my NHL in remission.  Couldn't ask for a better outcome.  I had a very long remission of 7 years (compared to the average 18 months). 

In January 2013, I noticed a lump in my right eyebrow.  A quick trip to my favorite surgeon, and we agreed it didn't act like my other NHL lumps did.  We agreed to watch it for 3 weeks.  At that point, it was still there so Dr. S suggested we remove it and get it to pathology...just to be safe.  I had the surgery 3/1/13.

Much to my surprise, the pathology came back as lymphoma again.  However, this time it is aggressive, grade 3.  While grade 1 can change to grade 3, my Oncologist, Dr. L doesn't feel like it is acting aggressive so we agreed to do more scans and wait to see what it is going to do.  I will see him more often, have more tests, and lump check myself regularly.  At any point something seems off, we will get together quickly. 

So that is basically what is up with me.  I guess we call it officially "Watch and Wait".  I remind those newly diagnosed with NHL, that is a valid treatment option if you are comfortable with it.  I am comfortable with it.  I know I'm not going to treat a damn eyebrow lump with aggressive chemotherapy until they show me I must.