A week after Jesse had his first surgery, we knew the results from his biopsy would be coming in at any time. Unfortunately with brain tissue, it's not as cut and dry as any other kind of tumor. It's not as simple as is it cancer, yes or no? There's varying degrees of severity. But I'll get to that! All I knew was if we hear Glioblastoma Metaforme, well, those are no good. They resist treatment, they come back, and they spread, fast. Now again, brain tumors don't usually act like other cancer. When they spread, they don't usually leave the central nervous system. But they can create multiple problem areas within the brain or spine. So far, we knew quite thankfully that there was only one.
Of course the day the call came, I spent my entire morning in meetings. My employers are headquartered in Montreal and make a visit to the office every other Wednesday. When they do, my entire day is lost to team meetings. Of course, that was the week they were in. I arrived at lunch hour with several frantic messages from my sister-in-law, my mother-in-law, even my mother trying to get ahold of me. The results are in and Dr. Maurer wants to see us all at 1:00.
And so the floor dropped out on my stomach again. Why did he want to see the whole family? What kind of news was it that he wants all of us? For those in the Rochester area, you know what a feat it is to make the trek from Ontario to Unity Hospital in a matter of 23 minutes but you bet I did it, praying all the way.
What seemed like an hour later Dr. Maurer came in with the results. It's an anaplastic astrocytoma. Most of the meeting was a blur but a few key notes stood out.
Brain cancer isn't staged like other kinds. It isn't, well it's early so it's grade 1 or we're really in trouble it's grade 4. (Though grade 4 is still trouble, big bad GBM trouble) Brain tumors are graded instead based on their level of aggression. Anaplastic astrocytoma is made from the cells of the brain called astrocysts, and the unfortunate news about that is they tend to inter-weave themselves into the healthy tissue making it impossible to get it all out. Anaplastic is graded a level 3. NOW. Right away Dr. Maurer said, this is NOT a glioblastoma! At that point I again was about to cry in relief. We can fight this thing. He told us the standard cookbook formula for taking care of an AA is 6 weeks of daily radiation going hand in hand with daily Temodar, which is a chemotherapy pill. After the 6 weeks they will give him a few weeks to recover and let any swelling go down, then have his first follow-up MRI. If the tumor shrinks or stays the same, they call it a success and we move on with his 5/23 cycles of Temodar. Likely 5 days on, 23 days off, for a further 6 months.
Just in time for our 1 year wedding anniversary. Lovely.
The most important information that I came away from that meeting with was that Dr. Maurer's firm opinion is that Jesse can manage this thing as long as we stay diligent on monitoring it. He does not like to talk about numbers and prognoses because Jesse is one person, not a statistic. Statistics don't consider that he is young, healthy, they were able to resection (remove a portion of) the tumor and just how fast he bounced back. They also don't consider the genetic markers that they test for, which at that time were still pending. He did not flinch when my father-in-law said Jesse would still be here in 40 years and we all had a good laugh when my mother-in-law asked about us still making babies and he answered "With all due respect Mrs, we're radiating his head not his reproductive parts". (I was glad she asked... I was afraid it would be an inappropriate question)
The best news came actually a week later when we talked to the oncologist, Dr. Bushunow. The tears started when he said the tumor is actually 91-95% GRADE 1 AND 2, and only a small portion had started to turn more aggressive. The glasses came off for me to ugly cry when he said it also tested positive for the MGMT marker, which is indicative that the tumor WILL SHRINK with chemotherapy.
Jesse is now a week and a half out from his second surgery. We're attempting to set up his final planning meeting to get fitted for his radiation "mask". He gets to wear this really neat device which is fitted for his head, and targets the specific area they need. Once we get that done we can get the next part of the journey under way.
Of course the day the call came, I spent my entire morning in meetings. My employers are headquartered in Montreal and make a visit to the office every other Wednesday. When they do, my entire day is lost to team meetings. Of course, that was the week they were in. I arrived at lunch hour with several frantic messages from my sister-in-law, my mother-in-law, even my mother trying to get ahold of me. The results are in and Dr. Maurer wants to see us all at 1:00.
And so the floor dropped out on my stomach again. Why did he want to see the whole family? What kind of news was it that he wants all of us? For those in the Rochester area, you know what a feat it is to make the trek from Ontario to Unity Hospital in a matter of 23 minutes but you bet I did it, praying all the way.
What seemed like an hour later Dr. Maurer came in with the results. It's an anaplastic astrocytoma. Most of the meeting was a blur but a few key notes stood out.
Brain cancer isn't staged like other kinds. It isn't, well it's early so it's grade 1 or we're really in trouble it's grade 4. (Though grade 4 is still trouble, big bad GBM trouble) Brain tumors are graded instead based on their level of aggression. Anaplastic astrocytoma is made from the cells of the brain called astrocysts, and the unfortunate news about that is they tend to inter-weave themselves into the healthy tissue making it impossible to get it all out. Anaplastic is graded a level 3. NOW. Right away Dr. Maurer said, this is NOT a glioblastoma! At that point I again was about to cry in relief. We can fight this thing. He told us the standard cookbook formula for taking care of an AA is 6 weeks of daily radiation going hand in hand with daily Temodar, which is a chemotherapy pill. After the 6 weeks they will give him a few weeks to recover and let any swelling go down, then have his first follow-up MRI. If the tumor shrinks or stays the same, they call it a success and we move on with his 5/23 cycles of Temodar. Likely 5 days on, 23 days off, for a further 6 months.
Just in time for our 1 year wedding anniversary. Lovely.
The most important information that I came away from that meeting with was that Dr. Maurer's firm opinion is that Jesse can manage this thing as long as we stay diligent on monitoring it. He does not like to talk about numbers and prognoses because Jesse is one person, not a statistic. Statistics don't consider that he is young, healthy, they were able to resection (remove a portion of) the tumor and just how fast he bounced back. They also don't consider the genetic markers that they test for, which at that time were still pending. He did not flinch when my father-in-law said Jesse would still be here in 40 years and we all had a good laugh when my mother-in-law asked about us still making babies and he answered "With all due respect Mrs, we're radiating his head not his reproductive parts". (I was glad she asked... I was afraid it would be an inappropriate question)
The best news came actually a week later when we talked to the oncologist, Dr. Bushunow. The tears started when he said the tumor is actually 91-95% GRADE 1 AND 2, and only a small portion had started to turn more aggressive. The glasses came off for me to ugly cry when he said it also tested positive for the MGMT marker, which is indicative that the tumor WILL SHRINK with chemotherapy.
Jesse is now a week and a half out from his second surgery. We're attempting to set up his final planning meeting to get fitted for his radiation "mask". He gets to wear this really neat device which is fitted for his head, and targets the specific area they need. Once we get that done we can get the next part of the journey under way.
I am so glad that you got good news -- not GBM, and radiated head not...other parts. I am so glad it is treatable, and while you are both in for quite the experience and rollercoaster as far as that is concerned, I'm glad that things are moving in a positive direction. I hope the radiation and chemo pill do their job swiftly and effectively!
ReplyDeleteThank you Jess. We're anxious to get this thing over with and move on!
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