Good afternoon, and a very happy Thursday to all of you incredible people in our lives! It was a very long day yesterday, and we had to do a lot of running around with extended consultations with both Dr. Li and Dr. Lang as well as an additional phone consult with Dr. Ravi on the way to the airport. I finally arrived home a little after 1230am only to wake at 6am to take Landon to school. I’m exhausted! Honestly, I’ve just been spending time with my 3 year old who is happy all the time. I need a little happy, and he cracks me up! I’ll try and keep this as short as possible (not so much), but as always, it’s a bit complicated.
So, it wasn’t the news we had hoped for. Whenever I start having too much fun and enjoying life again, life tries to intervene! However, we can do this. There are 3 spots that were collectively remarked upon by Dr. Li and Dr. Lang, but it gets complicated and frustrating about what to do which I will go over later. One is located in the right frontal lobe anterior to the large resected tumor (laymans: it’s in the right front part of my brain between my outer forehead and previously removed 3cm lesion from my open brain surgery). Second is located in the left occipital area (back left part of my brain). Third and most worrisome to me is in the right hippocampus (deep within the brain). None of these lesions enhanced, and they were only noticeable on a specific sequence called T2(star). For now, gammaknife is tentatively scheduled for December 18 pending some outside opinions my physicians are seeking from trusted experts in radiology and neurology.
Unfortunately, the radiologist who read the scans didn’t pick up on any of them. It is not a lack of professionalism or lack of care by the radiologist. My lesions are usually picked up first on what is called the T2(star) sequence. Before my case, my neurosurgeon and radiation oncologist hardly, if ever, looked at this sequence of imaging to determining new lesions. Given my clinical history, they go through this sequence with a fine tooth comb now.
First, the blessings are plentiful. I always try to look at what I am thankful for in any situation because there is always something. We are always protected and cared for by God in one way or another. We are blessed with an absolutely incredible medical team. As I mentioned above, they are meticulous about every image and scrutinize everything. They went through the scans independently and remarked upon these spots on their own.
Second, my insurance is absolutely amazing. I will not get into a debate about healthcare, but from my point of view knowing many patients, there are many horror stories these days concerning benefits dropped and out of pocket expenses. For me, I am beyond blessed to have the insurance I do. I have both a case manager and nurse manager who call me every week or two to see what I need, where I need it, and how soon. They personally take care of everything so I do not have to worry. They are amazing and are angels in this fight. We struggle financially as it is, but without them, we wouldn’t be able to do what we do.
Third, our support group is second to none. Thank you for caring, loving, and following our story. You stay by us and remain diligent in protecting us and covering us with prayers no matter how much time passes. You have not wavered in this fight, and because of that, neither should I. We will win this. Thank you!
As far as a plan, it’s complicated. My doctors are baffled as what to do. At this point, the issue is what are we fighting. My neurosurgeon questioned it this time, as did Dr. Ravi. Dr. Ravi is seeking an outside consult of a trusted friend of his who is a talented neuroradiologist. We will see what her thoughts are concerning this new findings and decide from there how to move forward.
Our options are either to do gammaknife next Friday, December 18, or do a short interval MRI in a month to restage these spots. The main concern is it isn’t entirely safe to irradiate areas that are benign. If they are in fact angiosarcoma, it is an easy decision. Unfortunately, there has been no confirmation that this is angiosarcoma. So…what else could it be? We have no clue. It could be any myriad of things, but none of them make sense. To make matters worse, the resected tumors from my craniotomy were completely necrosed and impossible to get any pathology out of them. In other words, they were completely dead tissue with no way to tell what sort of disease they were. Furthermore, these new spots are far too small to conduct any sort of pathology. Adding on, the doctors are in disagreement as to which spots are disease, which are results of brain surgery, and which are ???…who knows what. It’s all speculation, but in a twisted way, it gives one hope. It gives me hope and a drive to figure out and fight this off. It helps me focus, fight and move forward.
Obviously, I have my doubts that this is anything other than angiosarcoma. It wouldn’t make sense if it was something else, but it also doesn’t make sense on how these are surfacing, how they are presenting, and how they are behaving. It’s very complicated, and it is extremely exhausting. I cannot even begin to describe the feeling of uncertainty on what to do let alone what we are dealing with.
If we wait, does it give this a chance to progress if it’s disease? If we treat aggressively, are we over treating something that could end up being potentially harmful in the long run because it’s some benign anomaly? Are we missing something somewhere else in the body that is feeding these rogue sites? If we are to irradiate the hippocampus area, we must somehow be absolutely certain this is a malignant disease as this area of the brain is extremely important in our physiology.
With that said, we are scheduling a lumbar puncture to test my CSF fluid to make sure we aren’t missing something else with the CNS. Let’s hope and pray no abnormal cells are found within my CSF!
Long story short, we are assuming these are progressive lesions that need to be dealt with immediately. Gammaknife is scheduled for December 18 already as the surgical schedule is rapidly filling up due to the holidays approaching. Out of the 3 lesions, the only one agreed upon by all parties to be the most threatening is the left occipital anomaly. As for the right frontal spot, Dr. Lang believes it to be a result of surgery whereas Dr. Li believes it to be something else as it has noticeably changed within the last 4 MRIs. As for the spot within the right hippocampus, it does not enhance, and it has remained unchanged for about a year. It’s still there, still visible, and still needs to be monitored.
We will wait to hear otherwise about gammaknife. Please pray for us. And if you hit the lottery, please consider sharing as these back and forth trips, surgeries, travel expenses are getting rather expensive for us. 6 years of doing this starts to add up! Thank you, SO MUCH, for all of the fundraisers you have held for us over the years. I cannot begin to tell you what a blessing those have been!
We love you, so very much. I do not have symptoms. I remain active and healthy on the outside. It’s a lot to absorb, think about, and decide, but I will remain positive, hopeful and determined as long as God continues to pave the way and bless us with the breath of life.
Have an amazing day! And thank you for all of your kindness.