An update on Phil - Steroids, brain swelling and seizures - MRI's good!

This morning started as many of our mornings.......Phil making breakfast, me running around acting silly and planning for the day.  Something was different and we both knew it was a possibility, he had the aura of a seizure coming on.  At the last doctor's appointment we had been told we are trying to avoid the seizures because that can be a huge setback in Phil's healing process.   Phil is still taking steroids to help with the swelling in his brain due to the damages done by surgery, radiation and chemo.  This swelling continues to be an issue and seems to be what causes the seizures.   But the steroids cause many problems for him as well, swelling in the feet and ankles, thinning skin and I am sure many things we aren't even aware of.   The doctors want him to lower the dosage, of course this comes with the warning to watch him for unusual brain activity while this reduction is happening.  We have tried many methods of weaning him, and the latest attempt has been going on for about a month.  We notice agitation,  slowing of speech, more problems walking and sleep patterns change.  This morning he had the aura of the seizure and a panic attack.  He took something to calm him and then we increased the steroids and will go back up in dosage until he starts to stabilize and we will talk to the doctor about what to do next.  

This morning was different because he handled it by himself.  I was in the shower, because that is where I always am when he has a seizure.  Seems that every time it has happened, it is in the morning and while I shower.   He said he felt is coming on, calmed himself and tried distraction.  He took the xanax , it calms him and has been shown to keep the seizure at bay.  It seems to help stop what is going on with the seizure activity.  It is exactly what they do for him at the hospital.  He did not tell me that it had all happened, until we were out on our way to run errands, when I looked at him I could tell something was wrong.  He teared up and told me what had happened.  We took a drive, talked about that we would have to up the steroids and would talk to the doctor next week.  He is sleeping as I write, homemade chicken noodle soup in the crock pot and I'm working. 

I guess what that says is we are adjusting to our new life with cancer.  The last two doctors appointments have been positive.  The cancer is shrinking, the swelling is there but is going down and Phil has been functioning at a very high level physically and mentally.  It is still a cruel slap, it makes you face what is going on and it hurts right down to your pinkie toe.

After we pulled ourselves together, Phil said that he could walk and we set out from the house to the ocean.  We took it slow, we stopped and did some thrifting, sat down along the way and just appreciated the beauty around us.  We held hands, hugged and gave ourselves permission just to enjoy each other and the moment.  We cried a little, laughed and Phil said he wanted a hot dog.  We headed to The Grill by the beach at Lover's Point and had his hot dog!!!!  A dang hot dog and a bottle of water - Ha!  Seemed to work magic.  

  

  Thank you!

A walk to the beach, a nap and he is looking better already.

One moment at a time..........

These guys were waiting for us when we got back from our walk.