Back in December, my eye doctor had biopsied a piece of tissue that was obstructing the tube in the tear duct of my left eye. He clinically diagnosed me with Ocular Cicatricial Pemphigoid (OCP) and referred me to the world-renowned specialist, Dr. C Stephen Foster. I had my first appointment with Dr. Foster back on January 25. It was a five hour appointment where he did a full health history along with eight vials of blood and a conjunctival resection. That day, Dr. Foster said that he did not think that I have OCP. He knew that I had some sort of autoimmune disease, but couldn't be sure what until after reviewing all of the results.So, I left the office feeling thankful that I didn't have the dreaded OCP, but still in the dark about what was actually causing the issues with my eye. Two and a half weeks later, I got a phone call from Dr. Foster's office stating that the pathology report was in and I did, in fact, have OCP. The pathology and labs were all conclusive to the diagnosis. . So, they scheduled another appointment for me to go discuss treatment options. My appointment was Tuesday, February 19. We went in and I had vision testing, pressure testing, etc. Then, I was called in to see the doctor who had called me with the results. She did an update on my health history and then Dr. Foster came in. He explained the disease, gave me an informational booklet and said my disease level is "moderate". He went on to say that if I do not treat it, I will go blind. The treatment is chemotherapy. Not cancer-killing chemotherapy, but chemotherapy all in the same. The medication I will take is Methotrexate, taken orally (six tablets at a time) once per week for two years. Yep, I said two YEARS. Not weeks, not months, but two years. The hope is that I go into remission. If I start showing symptoms again after the two years, I start treatment again. If I have problems with the medication (low blood counts, organ failure, etc.), he will change my protocol. He went on to describe some of the side effects-hair thinning, nausea, vomiting, diarrhea, fatigue. He said that I may have all of the side effects, or I may have none-it all really depends on the individual as everyone is different. I have to go to Cambridge to see him for an appointment/testing every six weeks. I had the option of local treatment, but he said that if I have my treatment at MERSI, I have everything under his direction under one roof. If I go local, I will need to see an Opthamologist, a Rheumatologist, and an Oncologist and he warned that if there is a communication gap it can be deadly. This medication at this dosage is not taken lightly-it can shut down my liver and/or kidneys. He also made it very clear that I need to follow this protocol to a "t" and if I miss appointments he will stop prescribing. Basically, just explaining to me how dangerous this treatment can be. I decided to stay with treatment under his care. I have to stay completely away from alcohol during the entire treatment, must wear at least SPF 50, drink lots of water, take folic acid to protect my liver, etc.
So, how am I doing?
Well, honestly Tuesday was pretty rough. I felt pretty numb with all of the information coming at me. My husband & I talked a lot about all of the information we had just received. Let me also add that my husband is such a huge support. He will go to the ends of the earth and do whatever it takes to make sure I get the best treatment. He was immediately talking about what I would need for support. It's hard enough going through something like this, but with his support, I feel like I can do anything. I am a very lucky woman. So, we have spent a lot of time researching exactly what I can do to help my body fight this thing. Apparently, during chemotherapy the goal is to keep your body as alkaline as possible. We ordered THIS JUICER and I'm going to start juicing. Juicing with a cold press juicer is the quickest & best way to get the best nutrients to your body quickly, so that is the way we went. I will be juicing all organic veggies & fruits. I am also eliminating (or at least cutting back on) coffee since coffee is acidic. I am basically going to fuel my body as best I can to hopefully at least cut down on some of the side effects. I also ordered some supplements to help boost my immune system and hopefully help with the side effects: Probiotics, a good food-based multi-vitamin, Omegas, and Biotin. I will continue my morning cardio as that makes me feel good. As of today, I am feeling good and ready to fight this. I figure I can't control the disease or treatment, but I can control what I put into my body and taking care of myself. So, I choose to focus on that. I am also thankful, and find it kind of ironic, that I have made such changes to my diet & lifestyle in the past few months already. Had I not done that, I'm not sure how I would be handling this now. I guess there is a reason for everything. :)
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