Actually, that was a good experience last week because it gave me a really good picture of how things are with me right now. Let's have a look 'n see. I had two doctors' appointments this week, the first one with Schnapp, the pain specialist, the second one with Gubin, the urologist on Thursday. Both were bland appointments, doing no more than maintaining the status quo with my pain meds, and then Gubin said I had everything I needed from his nurse, and really hadn't needed to come in. NOW you tell us! Phooey! I really didn't need to hear him tell me I had to continue using that estrace cream, probably for two or three weeks, and if that doesn't work on the urethral caruncle then surgical intervention would be needed.
What I gleaned from it all is that I have held up remarkably well these weeks following the last IVIG, the first one received at the infusion center at St. Bernard's Hospital in Jonesboro. I had some pretty strong headaches, but I don't think they lasted quite as long as they usually have been lasting. For instance, right now, I am doing much better after these two trips to Memphis in a week than I usually do, not being nearly as sleepy. Better mobility. Handling conversations better, and enjoying them!! What is connected with what, I do not know because the IVIG is good for several autoimmune diseases that I also have, and it *could* be having a positive effect on one or more of them. That would be nice. Putting it all down, it sounds like more, and better overall strength, and it also seems like physical and mental. I had a good idea, imagination for this post, but did not have the time to pull it from the depths of that forgotten area of my brain, to put it altogether for animation. At a later time; I'm enthused by it now, and will apply it as soon as I can put it all together. That's the way it is with me. I get an idea, and I'm not satisfied until I have it together and running.
Okay, I want to introduce you to a friend of mine. His name is Coleman Larson. I have never met him. He is just a little guy with a twin brother named Caden. When he was 2½ Coleman had a tumor the size of a tangerine embedded in his cerebellum. It was removed and the word MEDULLOBLASTOMA became a regular part of Peggy and Scott Larson's vocabulary. I would love to put Peggy's words here, but I failed to get her permission to do just that, so must wait until I hear from her, and I do not know how long that will be now that they are in New York City. In the meantime, you can go ahead and read his profile here at CarePages About Coleman Larson .
Peggy writes, "Caden has been the medicine no doctor could prescribe. . . Cancer has changed us, we appreciate the small things in life and cherish the friendships we've made. We live each day to the fullest and don't sweat the small things we once did. Coleman has taught us all that ATTITUDE and FAITH can make a big difference in how you choose to deal with cancer. HE has taught us the true meaning of determination. Cancer takes away so much, but it can't take away the amazing spirit Coleman has displayed each and every chapter of his journey.
Coleman says, "some day I won't need NO more meds or pokes, wight mommy? THEN I tan be NO-MAL!" Amen to that, but I don't think this kid will ever be described as NORMAL, he's way too special for that! He and Caden are now 4yrs old, and will start preschool in the fall."
Go meet Coleman over at the CarePages. Peggy could sure use a "Hello, I'm thinking about you, praying for you," right about now as they embark on this treatment at Sloan Kettering in New York City. It was hard for her and Scott to make the decision for this particular treatment She's a remarkable young mother (young to me :-) with all she has, and is still going through, as cancer has made its way back, once again into Coleman's little body - his head and spine. Mother and son keep on going, and you will find strength for yourself as you read her updates from the beginning, as she faces one challenge after another.
TOODLES
Striving for a world without Myasthenia Gravis
Striving for a world without Myasthenia Gravis
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