It seems as if it's been forever since I've posted here; most certainly it has been far too long, as there has been so much going on, I scarcely know where to begin! My mind is forever filled with thoughts of, "I need to blog about that!" and then I don't know how to put things in words so I simply haven't written anything of substance down, with the exception of a notation in my daily planner that is often brief and abbreviated. I guess I always have good intentions, though follow-through seems to be my most difficult challenge. I decided today, however, to try to put together my thoughts and journal them here in some semblance of coherence.

The last couple of years have brought me through many valleys, but the peaks I have enjoyed here and there have definitely been worth the climb. I have mentioned over the past few years that we weren't getting a handle on my Myasthenia Gravis, and my Chronic Pancreatitis was progressing rapidly. My doctors discovered in April of 2022 that my MG was, in all probability, either triggered, or made worse, by a condition called Paraneoplastic Syndrome. This is a condition where the body puts out antibodies to fight a tumor (or tumors), which can be benign, malignant or anywhere in between; sometimes they are obvious, sometimes occult or hidden. But instead of fighting the tumor(s), those antibodies fight and damage a part of the body (such as the synaptic nerve junction, in my case) which results in conditions such as Myasthenia Gravis. I had my spleen and half my pancreas removed in April and in the process, we discovered that I had several cysts or tumors called IPMNs within the main and branch ducts of my pancreas that were not well visualized on imaging...not quite full blown cancer, but definitely almost, with more abnormal cells than normal and classified as high grade dysplasia, which is considered a malignant process. In fact, the surgical oncologist and the members of the medical team that I see for this condition all told me that they were shocked at the report and that had I not had surgery, but had continued to "wait and watch", I would definitely have pancreatic cancer within a year or two. 

While I am grateful for the surgery because it has definitely put my Myasthenia Gravis in the "well-controlled" category and I have been able to drive again, participate in things I enjoy doing, and even stop one of the treatments in my regime, I have remained symptomatic with my pancreas. I have continued to have debilitating pain, nausea, vomiting and rapid, unexplained weight loss, much to our chagrin. To tell the truth, I have been baffled, but on having my 6 month scan, we discovered the reason why...I still have at least one lesion within a duct of my pancreas that was left during the surgery in April because of its location and size. Of course, I was very disturbed upon learning that they didn't remove all the worrisome portions of my pancreas, and once again we are waiting and watching (though the waiting is far less when it comes to increments of time and the watching is far more aggressive than before). In order to remove the offending lesion (which at last scan seems to be growing), we will need to remove my entire pancreas, which is of course quite major surgery, and causes a whole host of issues of its own. Since I am weighing in at roughly 91 lbs, I am pretty sure that discussion will be on the table as I see my medical team over the next few weeks.

That being said, one of the things I have been looking forward to the most since getting my MG under control has been stopping my plasmapheresis treatments and having the special port I had surgically placed for those specific treatments removed by my favorite surgeon. I am pleased to say that I passed this milestone on January 23, 2023 and with great joy, I said "goodbye" to my apheresis port. After approximately 90 plasmapheresis treatments over the past 4 years, I proudly bear the scar on my chest, and consider it my "badge of courage". I still have the port on the other side of my chest and continue to get maintenance IVIG treatments every two weeks to keep all my conditions controlled and I am ever grateful that those treatments are available to me. THANK YOU to all who donate plasma...you are helping people like me to live our best lives! 

The other thing I am thrilled about is that with the renewed strength that improvement in my MG symptoms has brought, I have discovered that I can sing once again, I can walk more than I have in years, and have even done some dance steps along the way. I continue to find myself wonderstruck at the blessings I feel at being able to do those things. Next step...getting back on a bicycle! Now THAT would be quite the feat, and is one that I look forward to with great joy! And should major surgery be coming my way in the near future, it is wonderful to know that my strength is improved enough that I should not only survive it, but handle it well. I am trusting that God knows my needs and that He will provide...He is proving that to me even now, and is ever faithful in all His ways! 

"I will give thanks to Thee O Lord, among the peoples; and I will sing praises to Thee among the nations. For Thy lovingkindness is great above the heavens; and Thy truth reaches to the skies. Be exalted, O God, above the heavens, and Thy glory above all the earth." ~Psalm 108:3-5~

God bless you!

Love, Kathie Lea