New Developments as per Astro! It has been a while since I have posted or updated everyone on my status, and recently, there have been some developments. However, just to recap, let me tell you what led to where I am now. In July 2013 I was diagnosed with a Grade 2 Diffuse Astrocytoma , whom I like to call ‘Astro’. From December 2013 to January 2014 I underwent 6 weeks of radiation therapy. Since then its been a consistent road to improvement with Astro shrinking progressively each month. That was until Mid July when scans showed that the tumor had stopped shrinking. I was informed that this was normal and I should not be alarmed. Just prior to my move to China in September 2014, my Trini doctor connected me with a doctor in Wuhan who is a specialist in brain cancer. I was highly encouraged to establish a relationship with this new doctor as he would now be my lead. Thus, one of the first things I did upon arriving in China was meet with this doctor. Meeting the new doctor was fun–I got to have an intelligent conversation with a foreign professional who knew my history and could chime in with a new perspective, plus his English is really good. For the most part, he agreed with everything my former team had done, but he presented me of options to enhance my overall health based on Chinese medicine. Since my arrival though, my health has not been the greatest. I have had severe migraines that have lasted as long as four days, nose bleeds, blinding headaches, seizures, insomnia, bodily and joint pain, numbness in my extremities and persistent nausea/vomiting. On the most recent occasion last Sunday, I couldn’t sleep (as usual) and when I finally did fall asleep some random dude on my floor woke me with screaming and shouting. Within an hour of waking up I was in excruciating pain, I had a nose bleed and I was coughing up blood. I eventually had a seizure and spent the majority of my day at the hospital. My doctor immediately ordered more scans and I was informed that from the initial results my tumor had grown. Naturally I was upset but I had the torturous pleasure of brewing in my newly informed information until my consultation the next day. I underwent MRIs, CT Scans, blood works…the whole nine yards and it was done fast and efficiently while I was effectively being given a tour of the facilities. I sat in on a consultation with 4 doctors in 3 different countries via skype and oovoo. My lead doctor then started the consultation by asking me strange questions. He asked me (in his heavy Chinese accent), “So have you never thought about what you would do?” And I was like, “What I would do about WHAT?” And he said, “When the tumor grows back, what will you do?” That shut me up for a minute. Then I simply replied “No.” Of course, deep inside, on rare sad days, I worry about what would happen if I died and left my family and friends … But I have to admit, I haven’t done much thinking about the steps leading up to that crazy situation. Ninety percent of the time I still think I am invincible, like a teenager who just got a drivers license. Believe it or not, the last nine months I’ve lived in ignorance of how this whole life expectancy thing will work out but as this new doctor reminded me, “Grade twos will turn into grade threes and fours. Eventually.” Gosh, Chinese people are very frank - Thanks for that! I asked the doctor in a “level with me” voice, “But really, aren’t there cases when grade twos just stay a grade two forever?” I implied that with my youth, health and intelligence, someone as awesome as I must be spared from this injustice.“Rarely,” he said. And by rarely he, he meant, “Only if you die of something else.” (My interpretation.) However, he quickly followed that up with, “I have a 60 year old patient who just got diagnosed with a grade two Astrocytoma. And you know he didn’t just develop this tumor overnight. He then said “the reason I ask these questions is because from your current scans it is evident that your tumor has not only grown but it has locally advanced or progressed” because I have now been upgraded to Grade III Anaplastic Astrocytoma. Yes Grade III … as in there are only 4 Grades in Brain Cancer! He added “…your life expectancy for your current state is 2 years without treatment and 5-10 years with treatment” Chinese – ever the optimists! They cannot say for sure why but it can be the change in environment, lifestyle, diet, air quality, or a combination of elements that are still unknown. All we know for sure is that Astro is back and with a vengeance. Honestly, I don’t even want to question why. It took me a week to process everything and at no point did I ask God “Why?” I am simply going on the hope that Big Man knows what he is doing…for my own sanity! The way forward: Oral chemotherapy in the form of Temodar and stereotactic radiosurgery. Again, craniotomy is not an option because of the location of Astro and his sly ass in the midbrain. Naturally, my first concern about treatment is cost. However, treatment options for this particular type of tumor are better outside of Trinidad and China has a good track record thus far so I think my decision to stay here for treatment is wise. Unfortunately, the cost of the treatment is more than I or my family can bear. The total cost being 250,000rmb ($250,000TTD). My friends and family will be organizing fundraising initiatives to garner funds and we will be setting up an online donation site where money can be sent. I will post again after my consultation on Monday to confirm the start date and structure of treatment. In the meantime, I ask for prayers and support in any way. You can reach my mother Giselle Clarke at +18687860658 or my sister Rhiannon Willett at +18683822515 for more information on how you can help. If you can donate that will be greatly appreciated but if not, words of encouragement mean more to me than any amount of money. Thanks in advance! Let’s get ready to rumble – Get out your Grey gear once more because Astro wants to fight and I intend to Fight like a Girl! xoxo Rae #greyforrae
Posted on: Sat, 25 Oct 2014 18:17:33 +0000
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