Mixed Metaphors

The plan has been changed mid-game. My docs are going to put me on Revlimid instead of Velcade. The upside: Revlimid is in a pill form, instead of IV like Velcade. The downside: the side effects are multiple and serious. We’re talking deep vein thrombosis and pulmonary embolisms, with a side of cytopenias (very low blood counts). I pray I’m one of the lucky ones who gets by without any problems. It’s funny but true; the devil you know is better than the devil you don’t know. So right now I’m looking back fondly at Velcade. I’ll take a stomach ache over deep vein thrombosis any day! Guess I should take a stroll down memory lane and read a few blogs back, when I wanted to stop it immediately. Beware of what you wish for….

This whole thing is just a crap shoot, really, so I’m just throwing the dice again to see what I get. Why, you ask? Because none of these drugs are meant for AL amyloidosis. They were developed for multiple myeloma. The two diseases have some of the same characteristics, so the drugs do work for amyloidosis. But when you are in this leaky old boat called AL amyloidosis, you just wish someone would say, “Take this, it’ll stop the leaks immediately!” NOT going to happen. I just have faith that eventually everything we throw at this disease will stop it. I really do believe that we will succeed, but the path is crooked and full of switch-backs and steep inclines. Persevere, everyone. (Forgive me, this whole paragraph is a ridiculous mess of mixed metaphors.)

I was recently contacted by a lovely lady from Texas named Vasca whose husband was just diagnosed with AL amyloidosis. They are preparing for the fight with determination and faith. Please say a prayer for Michael that he will have an excellent response to treatment. Click here to follow his progress at their blogspot.

I can’t believe that July is almost gone already. The summer goes so fast, so why doesn’t February??? Hang in there, everyone.  ; )

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!  ; )

The Bermuda Triangle

Learning to be patient has been a life-long task for me. I really didn’t acquire the skill at all until I was in my late thirties, so it never came naturally to me. Now I find that I must dig deeper and find new reserves of patience. My treatment has come to a screeching halt due to a little problem with my right eye, which has more or less resolved itself. I don’t want to wait a minute longer to resume treatment, but I must. My doctors are being conservative and methodical in determining why I developed a problem, so until the process is complete, I have to wait it out. I will have had no less than eight appointments to get to the bottom of this mystery. Hopefully there won’t be a ninth.

So what else can possibly go wrong? Plenty! Yesterday there were large severe storms that hit PA and NJ. Apparently an electrical surge or lightning affected our house while we were at work. (What is it with me and lightning?) Our telephone and internet lines are now dead. The garage door lifter does not work. At all. And the pièce de résistance, our new, top-of-the-line air conditioner is running, running, running, but no cold air is coming out! And I believe it will be at least ninety degrees all week. Oh, by the way, the shower faucet in the hall bathroom developed a leak last week that will not stop, no matter what kind of new washers are installed. So now we need: 1) the ever-elusive Verizon technician, who was requested with no less than 50 menu options on their customer service line; 2) our garage door guy, who left for vacation today for a week; 3) the HVAC company; and 4) a plumber, who will no doubt charge us $100 just to walk through the front door.

I suppose that these are normal problems of life that all just happened to occur in a strange Bermuda Triangle kind of way. So, I will take a deep breath, relax, relax, and just let it all happen. Let it be. And my husband will write a lot of checks. ; )

Flying and Other Alien Experiences

I’m baaaack. Despite the corn fields, corn fields, corn fields, I made it without falling asleep and running into a barn. That’s because I took a charter bus from the airport to my parents house! However, I almost didn’t fly out due to losing too much fluid the day before from my diuretic. I guess I was dehydrated from losing 4 pounds in one day, and got very sick. But I rallied the next morning. It was wonderful to see my parents, sisters, brother, and extended family, and they held a nice party that everyone attended. And for once, the weather was perfect. (This is really saying something for Chicago.) I only wish I could do it more often. This year won’t be the year, however, of more than one trip back home.

On Wednesday I had a MRI study of my eyes and brain to investigate the mystery of my swollen optic nerve. My doctors are almost positive that it is not due to amyloidosis. They don’t know if it is a side effect of Velcade and/or steroids, or if it is unrelated. I opted for an open MRI, because I cannot tolerate being in a closed MRI without losing my mind.

I tried having a closed MRI a few years ago. I told the technician, who insisted on keeping me in that torture chamber much longer than I wanted (probably all of 2 minutes), that it didn’t matter what the MRI would find, because I would die if I stayed a minute more in that tube! Thus the open MRI was the only way for me. It actually wasn’t terrible. I laid my head in a foam head positioner. Not bad at all. But then they put this mask over my face that looked like I should be a goalie! Not good. But I could breathe, and that is always a good thing. ; ) She slid the table back under the MRI scanner, which looks like a hovering spacecraft, no kidding. I felt like my head was in a microwave. If you’ve never experienced it before, it is so noisy! Knocking, banging, weird, wooo-wooo-wooo alien sounds. But I persevered and completed the whole procedure. More tests and stuff next week. For now, they say the optic nerve is no longer swollen, so that is good news. Have a great weekend.