Post Month 4 Results

Yesterday I had my bimonthly MRI and appointment.  Per the doctor's words, I am stable.  There is no visible growth and they are continuing to monitor the white thick area around the tumor cavity to see if it is scar tissue or new growth.

My blood counts are iffy.  My white blood cells and platelets are now both below acceptable ranges.  The doctors are just going to continue to monitor the counts to see if they continue to drop.  If it gets too low then they will regroup and consider putting a hold on the chemotherapy.  In the meantime I just have to steer clear of germs and sickness, get a flu shot, and be careful.

The very far off risk in the blood counts is that the type of chemo I am on has,  in very rare cases, caused leukemia, so it is important to be sure that my bone marrow can handle the medicine.

Each month I've had odd episodes that seem unrelated to everything else that is going on, but after reviewing them, my doctor feels the incidents are seizure activity.  I sometimes feel numbness in extremities, feel chest tightening, shortness of breath, surges of pain in my head, etc.  The incidents are generally isolated and don't occur often, but are noticeable.  So, the doctor is changing my seizure medicine.  She also recommended an evaluation to see if I need more rehab services because my ability to handle multiple stimuli, loud noises, crowds, etc. is not good.  I'm also finally headed to an eye doctor next week to get a new prescription since my vision has changed quite a bit.

It was a good visit.  It is the news you want to hear at a visit.  But somehow, just going to the doctor and seeing the images and talking about it all is difficult anyway.  It just reminds me that I am indeed still sick, even if I don't feel that way most days.  Because my struggles manifest in fatigue, mental confusion, memory loss, and internal symptoms I spend quite a bit of time "pretending" everything is fine.  Or you can say I'm living life as normal.

We talked again about course of treatment and I will continue on the Temodar for two more months at which point I will have another MRI and then we will sit and discuss whether to keep going or not.  At 6 months it is important to see if the benefits of continuing outweigh the harm that the medicine can do to the body.  We were reminded that there are no studies comparing 6 month or 12 month course of this treatment, just doctor's preference and personal tolerance.

Thank you to the many people who reach out to me on MRI days to see how it went, who hold us all up in prayer, and who check in regularly.  It lifts my spirits and reminds me of the interconnectedness of the web of life.  I am grateful.