After crying my eyes out several times today, I decided that it was time to write a post and share what’s going on with me right now. I always found encouragement in all of your supportive comments whenever I wrote a post and your words help me get through tough situations like this.
I think I spoke too soon and it annoys me to see my last post and how happy I was to share my updates. Where to even begin? Two weeks ago, I had all my tests done to prepare for my follow up appointment for Singapore scheduled last week. I had my cortisol (steroid) levels checked and another MRI. Before leaving for Singapore last Wednesday, I made sure to squeeze in an appointment with my endocrinologist to discuss the results of my tests. As soon as I got my MRI results and read the report, I never knew I could feel like someone in a movie. It was like a scene where everything around you blurs and all you want to do is disappear because you don’t want anybody to see you. It was back. The main line that stuck in my head from the report: “no significant change in size of the mass..” I didn’t know what to feel. I was devastated and frustrated. I went to my appointment with my endocrinologist feeling numb and trying not to show my emotions. To cut the story short, she was also disappointed and just told me to ask my neurosurgeon in Singapore what exactly happened.
Wednesday was a horrible day filled with anxiety as I awaited Thursday, the day of the consultation with Dr. Ang, my neurosurgeon. My cousin joined us at the consultation because she was also not expecting such results. We had so many questions. But I had the biggest question of all, when will this be over? Dr. Ang passed us in the waiting area and asked if he could see the MRI while we were waiting. I knew he was anxious to see us as well since the time that lapsed from the consult of the patient before me seemed fairly short.
The consultation went a little like this. Dr. Ang tells us that he told us of a chance of a recurrence and this type has a high chance of recurring. *My comment: he failed to mention the latter part.. He said it was mostly cystic and that he believes it is not a tumor based on the *inconclusive* biopsy. So he said he drained out the fluid and got the little solid mass that was in there. We ask about the “sac” of the cyst, was it taken out? Dr. Ang said he didn’t take it out because it could have caused more damage. His advise is to observe for any growth, repeat another MRI in about 3-4 months and monitor my vision and hormone levels. There is a chance the mass won’t grow and I can live with this for the rest of my life. But if it does grow, then he will have to operate because then I can lose my peripheral vision and my hormones will also be affected. He said if he will operate a second time, then he will make sure to extract the sac. My cousin kept repeating the question: “Why didn’t you just do that in the first place?”
That question was the one thing that stayed with me and it was only today that it started to sink in. My mom and I saw another neurosurgeon today, Dr. Sabalza. He says he’s the only one in the whole of Makati area who does the endoscopic transsphenoidal surgery. The consultation was very informative. He said that if he were the one who operated, he would have taken out the sac. The life of the mass lies with the sac. So if it wasn’t taken out, then it will really recur. We told him that Dr. Ang said he didn’t take it out because it was detrimental. His response was yes that is true but it doesn’t mean it’s not doable. It can be done with extreme caution. He also said that he believes this is still a tumor since the biopsy was inconclusive and the MRI shows the mass as “enhanced”. Which he says, cysts don’t enhance under contrast MRI.
With everything said, I left his office angry. I started to recollect what happened after the surgery back in Singapore. Dr. Ang telling me that they COMPLETELY removed EVERYTHING. When he obviously did not because he left the sac and never even mentioned that he ran into this complication. He never once mentioned anything about the sac when it is obviously the most important part of the mass! Just imagine a blister. You pop it and squeeze the fluid out. If you leave the skin, the blister comes back. That’s what happened to my mass (I call it a mass because up to this point, nobody knows what it is).
I feel so disappointed and cheated on. I had so much faith in Dr. Ang but he let me down. Right now we are not considering another surgery. It is too soon. I’m due for an eye test tomorrow and another MRI in October/November. It does give me hope to think that this mass might never grow and I can just live with it. But I will live my life like I’m on the edge of my seat. Always wondering if my next MRI will show if it has grown or not. I know I have to be tough and be optimistic. It’s just hard living the rest of my life knowing that there’s that horrible possibility. I posted a question on facebook on how to live a worry free life if you’re given a specific reason to worry.. And I’ve been so encouraged by the responses I got. Thank you all for the continued support! For all of you, I will try to stay strong. You just have to grant me moments of brokenness and this day is one of them. Tomorrow might be better! I leave you guys with this picture my friend told me to check out. It’s easier said than done but when you think about it, it makes sense.