I hope this message finds your lives full of love and making wonderful and long-lasting memories.
August 8, 2015
I am so very sorry about the delay in getting this message out. There is a reason this recent trip to Houston was scheduled during this time frame. We got the results and had to travel home on Wednesday. I arrived home Wednesday evening at 130am. I had to wake up early and finish the CADD drawings for work that I was unable to finish prior to leaving for Houston. I finished them just in time for Andrea to return home. Once home, we had to finish packing in order to head to Peoria – the whole reason for scheduling this week’s appointments early – for my brother’s wedding! We arrived into Peoria late Thursday night at about midnight.
We spent yesterday walking around and visiting Peoria, including the CAT world headquarters followed by a hands-on museum. We then went to the wedding rehearsal followed by an amazing dinner with everybody. Long story short, this is our first chance to get a message out to all of you. We so very much appreciate your patience and understanding. We’re just living our lives and making beautiful memories in the face of adversity.
Recapping first, the amazing news with the CT scan is huge. We are calling that part no sign of disease with the intent to keep an eye on what was mentioned by my local radiologist. Dr. Ravi did not see anything of concern within my one remaining lung. Praise God!
As for the MRI, it is not good or bad … yet. For the most amazing news from it, there are NO new spots thanks be to God. That is a very big thing! Unfortunately, the lesion in the left frontal lobe that was small and barely detectable and ultimately treated with Gammaknife back in May isn’t behaving the way any of us would like. As a side note, there are expected changes with any surgery. You can expect edema and possibly some increase in size (doesn’t mean growth) due to inflammation for some time after.
We had our routine one month Gammaknife MRI at the beginning of July, and the report read great concerning all treated lesions but especially the most recent SRS surgery. Concerning the left frontal lesion that was treated, it read “Redemonstration of treated bifrontal lobe lesions without any evidence of new intracranial enhancing foci to suggest intracranial disease recurrence. “
Unfortunately, the current MRI read anything but normal. Furthermore, my neurosurgeon is on FMLA for most likely another month, and his input is crucial at the moment. I have a message out to his staff, and they reached out to Dr. Lang. Ironically, he is currently in Michigan! In short, the current MRI (attached to this message), reads: “redevelopment of enhancement at the site of a previously stereotactically treated metastatic lesion within the left frontal lobe, now measuring 5.2mm.”
We saw another surgeon, and he voiced a different point of view than that of my radiation oncologist. As another side note, this is why it is critical, as a patient, to have a multidisciplinary team especially this far in the game. Every physician has seen things differently in their careers, and all are equally as important.
Dr. Demonte, neurosurgeon, clinic note:
“Current MRI of the Brain, per Dr. DeMonte, reveals a 5mm enhancing left frontal lobe lesion near the site of recent radiosurgery. He is concerned that this may be new disease versus inflammatory, radiation-induced changes.”
Dr. Li, radiation oncologist, clinic note:
“His most recent scan of the brain shows slight increased enhancement along the left frontal lobe lesion, which looks most consistent with radiation change as opposed to progression.”
I share all of this, every time, for many reasons, but no more than to show you what we are faced with almost every time. There is no right or wrong. Nobody knows so we have to make a decision with our gut and past precedence. It’s fatiguing.
I voiced my concerns to Dr. Ravi that I am not at all convinced this isn’t disease progression. He agreed, and we will wait to see what Dr. Lang’s interpretation is. For the time being, we are doing close follow up scans for both the CNS and rest of the body. In other words, 4 weeks for the next MRI to check on the status of the brain and 6 weeks for the next CT scan of the body to check it all but most importantly, to check the status of the right lung.
What now? To be as cliché as humanly possible, we live, laugh and love. It doesn’t change a thing. We hurried home from Houston, as planned, to do what was mentioned earlier, and now we are having an amazing time in Peoria.
This isn’t bad news nor is it good news. However, I would like for once to just post NED. Unfortunately, it isn’t in the cards at the moment, but it will be.
One might ask, “why does God allow this to happen?”. Honestly, if that is your thought process, you are looking at this from the wrong perspective. The answer is thank you, God, for not allowing this to be so much worse. Thank you, God, for giving me a beautiful life with a very strong woman and two amazing and HEALTHY children! Thank you for all of the wonderful memories to date and the many new memories to come. And thank you for giving me the tools to fight this disease, which includes but is not limited to, the most amazing support group ever know, present day treatments, and the most excellent of physicians.
Please pray for use to get through this month leading up to the next scans. Please pray for an amazing outcome in the next round of scans. Please pray for peace of mind and the continued ability to live life to the fullest making memories full of laughter and love. And please pray that my brother, Kyle, has an amazing day tomorrow followed by a lifetime full of love and happiness as he marries the love of his life, Abby.
As we visited CAT world headquarters yesterday (and it was amazing), it would only be right to drive to Moline and visit the John Deere world headquarters today followed by a water park tomorrow before the wedding!
Don’t let life’s circumstances define you. You define your life and how it is lived, God willing.
August 11, 2015
The image studies came in the mail from MD Anderson yesterday. If you are a visual person like me, all you read with my update on Saturday was bla, bla, bla … not a good MRI, but not a bad MRI either … yet.
I put together a comparison of the most recent MRI (August 4, 2015) to the one month post gammaknife MRI (June 2, 2015) to show you why there is concern.
(click image to enlarge)
You’ll want to take note of the different shading around the areas (contrast difference – enhancement – edema (bleeding/swelling)), difference in size and just the general appearance in one and not the other.
One might say the images are cut differently especially with only 24 images per series in some (multiple series in an image study). This is very correct AND very important to consider. However, I matched the 2 up as accurately as allowed by the 2 different studies. For the ones where it shows up now and not before, I was meticulous in the fact to make sure that it shows up on multiple slices (unable to show here since they are still images). This means that although the slices are not at the exact same point in comparison, by spanning multiple slices it should show up on both if it is present on both.
^^^^^what this last paragraph equates to is that I did my due diligence in selecting relevant images. I did not post inconclusive evidence when comparing where it just isn’t obvious between the two.