Day 46 – End of Chemo Round 2 I have been waiting for the latest results from Stanford to update my journey. Well, I have some very good news. My lambda light chain results are down from 13.6 to 1.9 after 2 rounds of chemo. The goal of them chemo was to get it to 2 or less. So, 1.9 accomplishes that goal and stops or lessons the ability of the myeloma to produce more amyloid that sets up like concrete in my heart and other organs, especially the kidneys. However, there is no known treatment for reducing the damage to the heart and the kidneys. The damage has already been done. My Stanford doctor keeps reminding me that the goal is to stop/slow down the amyloid production and then treat systems to keep me as comfortable as the can for as long as they can. Other good news: My blood sugars have been out of control with numbers in the 430’s, forcing me to avoid carbs. With my very strict restriction on sodium, there was little I could eat but meat and non-high carb vegetables. Nothing tasted good anymore. My weight got down to 103 pounds. I was diagnosed as malnourished. I am now on insulin, and seeing an endochronologist, and though I have some 300’s, I am able to eat carbs again. I love potatoes, and pasta, and bread. It’s nice to be able to eat carbs again. I still avoid things with too much sugar. I must also avoid everything packaged, and most anything in restaurants because the sodium count is too high. I have started gaining weight again. I am also on Megace to stimulate my appetite. Also, my biggest problem since January has been the fluid on my heart, and lungs, and upper abdomen. With heavy doses of diuretics, the fluid is significantly reduced, which makes it easier to breath, less shortness of breath, less pressure across my chest. My heart condition: In January I was diagnosed with a heart attack. It was not diagnosed with the EKG, but with a blood test that also indicates a heart attack. However, since there was no blockage, it is not considered to be a traditional heart attack. They call it: “damage to heart caused by heart failure in which coronary catheter showed clean coronary arteries”. The damage from one of these attacks to the heart is permanent. It does not repair itself. The area heals over with a scar. Because the treatment for this is different from a normal heart attack, Emergency Staff is required to perform standard heart attack treatment in an emergency, but these procedures would only do more harm than good so I now carry a card signed by my Stanford Cardiologist stating: “Emergency Instructions for Cardiac Amyloidosis Avoid: nitroglycerine sublingual/spray; IV fluids unless clear dehydration; Beta-blockers/calcium blockers/digoxin. Questions, call Dr. Witteles at 650-498-4343.” I am still being treated for Congestive Heart Failure. My BNP, a measure of congestive heart failure, is over 30,000. That is really high. The biggest concern however is that I am now experiencing what I call “distress” about 3-4 nights per week. These are very similar to what I experienced in January, where I have shortness of breath, pain in my heart that radiates up my neck and into my jaw. At that time, I am quite dysfunctional. I can’t move far. I sort of collapse and I must lay down where I am at and try to relax until it passes. This is a time when I would have taken nitro, but I’m not allowed to take nitroglycerine anymore. The doctor says these are episodes of my heart not being able to get blood/oxygen to where the body demands it. It is part of the heart failure. My sister-in-law, from Houston, is coming the first week in December. She just lost her husband, my brother. We have been talking nearly every day since before he died. We value our time together and she will come help to take care of me for a week, which will relieve Grant’s burden. I am high maintenance right now. I don’t want to be and it seems we all get to the end of our rope a little faster about non-important things. Please pray for Grant, Janine, Kristin and Shawna. This is very hard for all of them. Please pray that God equips me to be the blessing and the light that He wants me to be. I know God equips us for what He calls me to do, and I can see His hand on our lives… On a happier note, we are trying to enjoy the time we have and make special memories, which is why I sent the Lake Tahoe pictures.
Posted on: Fri, 15 Nov 2013 00:27:05 +0000
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