It's been a really crazy week. There's so much going on, it's a little hard to keep track. Honestly, that's half the purpose of this blog, to help ME keep track of what's going on!! 😝 Here's the update:
MONDAY - Unplanned Surgery
Two things. First, Monday was Tumor Board. A committee of doctors (neurologists, oncologists, pathologists, etc) at Barrow Neurology looked over my scans to determine what they thought was going on, and how we should move forward. We didn't get results Monday, but trust me, we were thinking about it all day, and praying this would bring some answers.
The second thing about Monday, was an unplanned little surgery 😞 The incision in my neck (where they inserted my central line/port, before tunneling to my chest) wasn't healing well. I finally went in to have them take a look. I expected advice about neosporin, maybe an antibiotic, keep it dry....I dunno, but I wasn't expecting to see the operating room again! The doc was pretty casual when he heard what I came in for, but when he looked at the incision he got very serious. It was open to where you could see the internal stitches. (so creepy!!) He clipped them, and the whole thing fell open 😳. It hadn't healed at all. He said it could have to do with my overall disease (whatever that is!) but my body isn't healing the wound, despite the stitches and constant steri strips. He had to cut out the bad scar tissue, create new edges, and put in a new set of stitches to see if we can get it to heal better this time. At the end of that day, I was drugged up, in pain, and exhausted. Totally forgot about Tumor Board by the end.
TUESDAY - Tumor Board Results
On Tuesday morning I got a call from a neuro-surgeon's office stating that my neuro-oncologist had asked them to schedule me ASAP for a biopsy consultation with Dr. Nakaji (neurosurgeon). They said they had an opening Thursday for the consultation and an opening Monday for a brain biopsy......ummmmm. I think they forgot to tell me some things!!!
I called to get the official Tumor Board update from my neuro-oncologist, but I guess it was pretty clear what they were thinking 😕 Dr. Dardis called me back later in the day with the report. He said the committee is strongly recommending a biopsy. It is their opinion that this could definitely be a primary brain tumor, and we should get ahead of this. They specifically stated that they felt this could be an astrocytoma or oligodendroglioma. They agreed with a previous doc that it could also be Lymphomatoid Granulomatosis, but they said we can't diagnose this based on scans alone, and given that the treatments are vastly different, we can't make a treatment plan without more information. The doc reiterated that this lesion is unlikely to stop growing without an intervention, and it's in a really bad spot to be growing.
Regarding my plasmapheresis treatments, the Tumor Board was not sure if antibodies could be causing my brain lesions. They said those antibodies definitely can damage the brain, but they thought we would be seeing more diffuse damage across the whole brain, rather than lesions. The original doc is aware of this, but he says lesions are still possible, and he felt strongly about pursuing this treatment before doing anything more dangerous or invasive. Fortunately, the neuro oncologist said he is totally fine waiting until after the plasmapheresis and the follow up MRI, just to see if there is any change on my brain scans, so I can test out this theory first. (Either way, he agrees that plasmapheresis is a good idea for treating my abnormal antibodies and neurological symptoms, the only debate is whether or not it will also treat my brain.)
I keep hearing the same advice over and over, that I need to stay open to the idea of a biopsy. It is starting to sink in that this might have to happen. I've been warned for five years about the risks of a biopsy in this location of my brain. It's hard to get up the courage to accept those risks (paralysis, sensory loss, or possible loss of speech). Good thing we have some time. Suddenly I'm feeling grateful that my plasmapheresis treatments will last two months, so I have time to settle with this and make a decision!!
WEDNESDAY - Plasmapheresis #3
On Wednesday I had my third plasmapheresis treatment. I felt really great in the two days leading up to the treatment, but man this one hit me hard!! Halfway through the treatment I started feeling body aches, headache, just an overall faint feeling. It's been a day and a half and it still hasn't gone away. I went to the doc this morning (Thursday) and my blood pressure was pretty low, so maybe that's part of it. I dunno. It's been a rough couple days though.
THURSDAY - Biopsy Consultation
Today is Thursday, and I met with Dr. Nakaji, the neurosurgeon this morning. Something to be aware of is that Dr. Nakaji has followed my case since the beginning. He was the very first doctor to tell me we should wait on a biopsy, and save it for a last resort. He and Dr. Okuda (my former neurologist) were fierce in protecting me from a biopsy, even when other docs were ready to go for it just to solve the mystery. So Dr. Nakaji is someone I really trust on this matter. He was not part of the Tumor Board, so I was curious to hear what he would say.
Basically, he echoed everything I have been hearing from the other docs. He said this lesion is clearly "more advanced" now and that it won't likely stop growing without a targeted treatment plan, and that we can't make a treatment plan without a diagnosis. He said we absolutely made the right decision to wait on this four years ago, but now its time to seriously consider a biopsy. He said all those risks we have been worried about with the biopsy could happen anyways, if he lesion keeps growing in that sensitive area of my brain. I asked him what he thought if we decided to keep waiting, and just watch it really closely....he said we have already done that, and we are past that point.
He said that even though the damage could be terrible if there were a complication, he said the actual risk of having a complication with a needle biopsy is only like 3%. He also said that there is an area where he can get a sample that is closer to the sensory cortex, rather than the motor cortex, where side effects would be more likely sensory (numbness, tingling, etc) versus motor (muscle weakness or paralysis). He explained several other precautions he would take to limit the risks, including smaller biopsy sample, avoiding the center of the enhancement, and making sure I have a strong platelet counts to avoid a bleed.
He said the biggest risk of a biopsy is not getting an answer. I guess sometime the tissue sample can be abnormal, but completely inconclusive...that sounds like something my body would give us!! That would be so frustrating. There's so much to think about with this decision.
I have to say, I was expecting him to say that we could keep waiting, or to say that everyone was over-stating the matter here. But he pretty strongly recommended that we do the biopsy. He said it's not an emergency, so he is fine waiting for the plasmapheresis to wrap up. He said it's "not fast urgent, but it is slow urgent"...haha. So we have some time. But not forever. Ugh. So much to think about.
FRIDAY - Primary Doc & Plasmapheresis #4
Tomorrow I have a morning appointment with Dr. Chamberlin, my amazing primary care doc. He has been with me since the beginning, and always does a great job at helping me organize things, think through my decisions, and clarify opinions across different physicians. I am interested to hear his thoughts on all of this recent chaos.
I also have my 4th plasmapheresis treatment tomorrow. Really hoping I will handle this one better. It's supposed to be helping my symptoms, not giving me new ones!!
No comments:
Post a Comment