Thankful

The days are passing by, and I continue to do well with Revlimid/Dexamethasone as my new treatment. Of course I haven’t had any blood work done since I started, so I don’t know yet if the treatment is actually effective. I am tolerating it much better than Velcade. My only side effect is edema, which is probably from the steroids. If you have a “Listerine” mentality that if it tastes bad, then it must work, my lack of significant side effects doesn’t bode well. However, I am hopeful, ever hopeful, that the Revlimid is chomping away on those bad plasma cells and reducing my lambda light chain in a big way. We shall see.

Although AL amyloidosis seems like having an alien at large in my bone marrow, the truth is that it is my very own plasma cells that are going to kill me if I don’t kill them first. How strange it is to think of cells growing wild in your bones, even though you feel pretty normal. Perhaps that is the problem with amyloidosis; you feel relatively well for a long time, until it has ruined your heart or your kidneys. I still wonder how long I would have gone undiagnosed had I not had my annual checkup in January? I still feel the same as I did then: a little fatigued, ankles a bit swollen, red spots around my eyelids every now and then. Who suspects a life-threatening disease when they have a little fatigue? Who expects to need a stem cell transplant for swollen ankles? It is simply too weird, too bizarre, to jump from a subtle symptom to drastic life-saving measures.

And so I take my pills each day, amazed that I don’t have to feel worse to get better. (At least I’m hoping that is true.) Modern medicine is truly awe inspiring. I once told my doctor that I was glad he had to figure out everything instead of me, because it sure is a complicated mess. Drug interactions, genetic abnormalities, past medical issues, the list of complications goes on and on. How they figure it all out is beyond me, but I’m surely thankful that they can.

Keeping the Jackals Out

I dreamt that I was inside a house, standing by a door. When I opened the door to a twilight sky, I looked up a hill and saw two snarling jackals profiled in the dark, with glowing eyes and horrible fangs à la Disney’s Lion King, ready to attack. I quickly moved to slam and lock the door, but found out that the door wouldn’t close or lock, because it didn’t even touch the door jamb at all. In a panic, I held the door, waiting for the animals to hit it and break through, but it never happened. Then I woke up. First of all, I was surprised that I had kept the jackals out! I felt so pleased that I had succeeded. Then I realized that the jackals symbolize all those “bad” things that can happen, and the un-lockable, un-closable door is the door to my mind, out of which I can keep the bad things with willpower alone. I think it is true that we can't lock that door, but perhaps we can keep negativity “outside” if we try. (Thanks to Marjorie Educational Books for the perfect illustration of my nightmare, illustrated by Marjorie van Heerden!)

The jackals may have been caused by my multiple eye tests yesterday at Wills Eye Institute in Philadelphia. (Did you know that Wills Eye Institute, est. 1832, was the first hospital in the U.S. dedicated to eye health, and is rated #3 in the nation for the best eye hospitals.) I had one really wacky eye test, Optical Coherence Tomography (OCT), which had squiggly red lines and a pulsing blue circle to stare at for minutes on end. My brain felt scrambled afterwards. This test takes color photos and measures the pressure of the optic nerve, and is completely non-invasive. I had another test where I stared into a lighted sphere (for lack of a better word) with tiny points of light that pop up all around to test peripheral vision. After all this, the neuro-opthalmologist came to the conclusion that my swollen optic nerve is probably due to the on/off steroids treatment schedule. She said that once steroids are withdrawn, an after effect is that the optic nerve can swell. I sure hope the swelling goes away soon, so that I can get back to the serious business of fighting amyloid. But everything has an upside: I've lost 10 pounds this month. Those steroids can put on the water weight!  ; )