I thought it was time to write a blog about what has been going on with my chronic illness. As those who have read my blog know, I suffer from a paraneoplastic neurological syndrome that was triggered by Stage IV melanoma. To learn more about what this is, read my previous blog entry: https://mcreyscope.com/2014/02/10/what-is-paraneoplastic-syndrome/.
***Over the past five or six years, I have experienced a number of serious medical issues that are likely all related in some way to the cancer that started it all. Included are chronic pain and overwhelming fatigue that very much mimics the symptoms of ME/chronic fatigue syndrome and fibromyalgia.***
My paraneoplastic syndrome has been treated with high dose steroids, cyclophosphamide (Cytoxan), and high dose IVIG (intravenous immunoglobulin G). All have nasty side effects.
***The steroids make you crazy, the Cytoxan is a potent chemotherapy drug that can cause severe nausea and even cancer when taken for long periods of time (like I did), and the IVIG can cause things like aseptic meningitis and blood clots (both of which I have had the pleasure to endure).***
Last summer I went to the Mayo Clinic for a consultation for two reasons: (1) my symptoms were no longer stable taking the Cytoxan, and (2) I was afraid of what the Cytoxan might be doing to me since I had been taking it for about two and one half years.
The doctors at Mayo strongly recommended that I stop taking the Cytoxan and recommended a high dose IVIG protocol. When I returned home, my home neurologist first started me on his own dosage (less than what was recommended). Regardless, the result of the first dose was a bout of aseptic meningitis (headache, high fever, very ill). After the formal letter came from the consultant at Mayo, he started me on the new higher dosage protocol (after insurance approval of course).
***After receiving the loading dose of IVIG in October 2014 over a three day period under the new protocol, I had a heart attack (see my post: https://mcreyscope.com/2014/11/01/heart-attack-a-reminder-of-my-fragile-mortality/).***
Whether or not this was a direct result of the IVIG or not is something that can not be determined with absolute certainty. After all, I did have acute coronary syndrome previously in 2010 which had led to 4 stents in my LAD artery (the so-called “widowmaker”). See my post at: https://mcreyscope.com/2014/01/24/heart-attack-but-i-have-melanoma/
Of course, the IVIG had to be stopped until I had recovered. I was now taking Effient along with Aspirin (which I had been taking for several years).
***Effient (prasugrel) keeps the platelets in your blood from coagulating (clotting) to prevent unwanted blood clots that can occur with certain heart or blood vessel conditions. Effient is used to prevent blood clots in people with acute coronary syndrome who are undergoing a procedure after a recent heart attack or stroke, and in people with certain disorders of the heart or blood vessels.***
On January 6-8, 2015, I again received the loading dose of IVIG according to the Mayo protocol. This time, there were no serious side effects and I actually could see some improvement in my overall condition after about 72 hours. I then received weekly doses on January 15th and January 22nd. Each dose was 0.4 gram per kilogram of weight or about 40 grams of IVIG. The brand of IVIG had been changed to a pre-mixed version in hopes of preventing a repeat of the clot that had occurred in October.
***On Friday, January 23, 2015, I awakened to what I thought was something in my right eye. But I couldn’t get it out. I realized that there was a blind spot covering at least the lower left quadrant of the field of vision in my right eye.***
I made an appointment to see my ophthalmologist as soon as I could which was Monday morning at 9 am. Testing was done and almost immediately upon examining the eye, the doctor diagnosed a branch retinal artery occlusion as the cause of my blind spot.
On Thursday, I saw the retinal specialist. After even more testing and examinations, he essentially came to the same conclusion. Basically he explained that there was a relatively large piece of cholesterol plaque lodged in a branch of the retinal artery. This was causing the blind spot. It would not get better.
***But, he advised things could be much worse. The occlusion was a stroke which could have gone to the brain and killed me or blocked the main retinal artery resulting in total blindness in my right eye.***
Because the most likely causes of such a clot are either a build-up of plaque in the carotid arteries or plaque coming from the heart because of a problem with a heart valve, further testing was advised. I will undergo an ultrasound of my carotid arteries on Monday and we will go from there. The echocardiogram that was done in October, when I had the heart attack, showed no problems with my heart valves, so I will likely not repeat that test.
***I have been through so much and so many of the things that have happened could have killed me. It once again just goes to show that it is not yet my time to leave old planet Earth.***
I do admit that it is tough. It can be especially tough on the days that the pain is so bad that I just want to scream. But I have not given up and I refuse to give up. I will get up each day and go on with my life.
And, I think I have proven, at least to myself, that I have a whole lot of living left to do. Despite it all, I am going to Nashville this weekend to participate in a meeting of the Sons of Union Veterans of the Civil War. I am tired and I hurt and I know I will pay for it next week. But I choose to go anyway. I guess I’m just stubborn.
***So, I tell anyone who suffers from a chronic disease – keep on living. Find a distraction. Keep those that care close to you. And love every minute God gives you. Who knows? You might make a difference for someone else. That is my main ambition.***
After all, I have a guardian angel looking after me.
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