Good evening! I’m so sorry about the delay. It’s been a rough and long 2.5 days to say the least. As always, it can never be cut and dry. Furthermore, I arrived home about 1am last night only to wake up 5 hours later to start the day with the kiddos. For those with migraines, drastic weather changes with lack of sleep, a lot of stress, and a child that needs a lot of attention all day is a recipe for headache disaster. Needless to say, it’s been a long day, and we greatly appreciate your patience.
First, thanks be to God that the brain MRI was clear of any worrisome issues. The previously treated lesions were stable and show no signs of concern. Furthermore, there are no new spots to be remarked upon. This is amazing news. We don’t have an explanation of the sudden onset of intense headaches, but with it being non-disease related, I’ll figure it out! I plan to see a local neurologist in the near future to help me get a grasp on this! For the time being, thank you for praying so hard for a clear MRI!
Now, the sobering news isn’t so great. As you may recall, I had a PET scan about a week ago. Within the final radiology report, a small 15mm lesion with an SUV of 2.8 was remarked upon in my right lower lung. At the time, I convinced myself that it was an artificial/anomaly or some sort of inflammatory change non-disease related. I also didn’t have the actual images to look at yet to take a look for myself.
Fast forward to this week in Houston, I brought all of my medical records with me as I always do including the most recent images and report. With some down time prior to my consultations, I decided to some of my own reviewing of my medical history, especially of previous scans. I went back to my CT scan at the end of July 2015, and I found a disturbing note/remark. There was a lesion measuring 2-3mm at the time in the same exact spot as the lesion remarked upon last week.
It was not an oversight by any party involved. We would never let that happen. I remember vividly discussing those July results with Dr. Ravi. At the time, I was finally recovering from a very rough 2.5 month upper respiratory infection. There were multiple tiny spots remarked upon in that scan so we chalked it up to inflammation from infection at the time. Adding to our theory about those spots, my last PET scan in October did not reveal any abnormalities in the current area in question. There was nothing to tell us otherwise.
Unfortunately, the time between my very initial lesion in my left lung to my recurrence was 2.5 years. This was without chemo for 2.5 years. The precedent this disease is showing is peculiar in that it is a slow grower which is very unusual for angiosarcoma. I’ve been off of chemo for almost 10 months now, and it has been almost 3 years this February since my last known lesion outside of my brain. Timing is about right if you want to look at it that way.
In Houston once we received the all clear MRI from both Dr. Lang and Dr. Li, we were not leaving the consult with Dr. Li until we reviewed the PET scan with her. She is a radiation oncologist after all! After some figuring out with her staff on who has the images and report, we were able to view the images with her. As a side note, we could sense God’s presence and protection. I don’t believe in luck or coincidence. With that said, it just so happened that one of Dr. Li’s most trusted colleagues was in clinic still. This colleague is a radiation oncologist who just happened to be a lung specialist for the first half of her career (15 years) prior to transferring to head and neck. Needless to say, she took over this impromptu consultation. Pretty amazing witnessing story, isn’t it?
Unfortunately with my findings of the previous scan, this is very worrisome for a recurrence of angiosarcoma. Even without the previous scan, it still presents as my first lesion in 2009 did, just not as big. Since it was remarked upon before, this signifies growth between the 2 scans. We discussed treatment options from a radiation point of view. With the location and size, they recommended breath holding SBRT (stereotactic body radiation treatment) – it’s much like gammaknife with precision, but this is for the body and takes into account breathing and body movement. Due to the fact of only having one lung, doing a biopsy is unlikely because of the risk of a pneumothorax (collapsed lung).
To say this is devastating would be an understatement. I have no doubt about beating this disease again. It’s the implications of it’s return that have me worried.
We’ve done 67 rounds of chemo and 6 total surgeries thus far to hopefully destroy this devil disease. This is why recurrences are extremely difficult to handle. You’re starting at square one except it isn’t the initial square one. We’ve trekked so far already only to start with all the beginning problems just without the initial treatment options. There’s a lot to say about having a plethora of treatment options to try. It gives you so much hope, confidence, and strength. Don’t get me wrong. It’s far from over. I already have a lot of options I’ve kept in my back pocket and researched. It’s just a lot more work and research on an already depleted energy level.
So, now what? First, Dr. Ravi was out of country visiting family. He arrived back into the states yesterday, so I texted him. He’ll compare the 2 scans as soon as possible, but I have no reason to believe he’ll think differently than my radiation oncologist. I put a call into him this evening. He answered, but asked if he could call me back. I’ll hear from him some time tomorrow to update you all more. When we spoke late last week, he eluded to the fact that if this in fact angiosarcoma, he would want me to go back onto systemic therapy.
Next, nothing else changes. I still will not let it define my life or how I live each day. We’ve been blessed with so many days together as a family. I’ve been blessed with so many wonderful memories and so much love to fill 100 lifetimes. We’ve been here before. We know what to do, and we know how to do. One day at a time, and we can do it together. We need you just as we always have. We cannot do this without you.
We will fight. We will win. We will survive.
I love you all so very much. Please keep us in your prayers as always. Thanks for being my inspiration to want to live in this wonderful and loving world.