Tuesday, March 29, 2016

Hello Everyone,

Today is the four week marker since the surgery.  Last week I had a follow-up MRI and a conversation with the neurosurgeon as well as a let’s-get-ready for radiation visit with the radiology folks.  I have to say (knock on wood) things are progressing well.  

The MRI showed very little tumor tissue left after the operation.  Dr. Penar actually seemed pleased with the outcome!  We knew there would be remnants left over because of the caution he wanted to exercise as he worked in narrow quarters to protect vital structures.  I will be starting radiation on April 4 and that will continue for thirty sessions.  As I may have mentioned before, the hospital is a fifteen minute walk from our front door.  I am so glad not to be driving 1-2 hours for each of these sessions!  

Currently, I’m still experiencing some tiredness but much less so than last week.  Ann and I were able to attend Easter services on Sunday with Kyla and Cianya and Joekai!  I am virtually pain free though my right eyelid is a bit droopy and that hampers the vision from that eye a bit.  But hey, I’m not complaining.  I’m in quite a good place and my zipper has healed sufficiently so children don’t go running and screaming when they approach me on the street.


Thank you for the ever-present light you have beamed my way.  I think as I head into radiation, I won’t be updating Rathbones2016 as much as I have.  I’ve tried to be a bit balanced about letting you know how things are going and so appreciate your sticking with me.  I will let you know how things are going during radiation and when I write my last update, I'll note that as well.

BTW, this strange bird appeared at our bird feeder late last week.  Curious if anyone might be able to identify it???


All the best,
and Thank You!

Charlie and Ann

Monday, March 21, 2016

Busy week ahead...

Busy week this week.  MRI tomorrow, Tuesday - first MRI in this post-operative period.  Have to be at the medical center at 615am.  On Wednesday we sit with Dr. Penar, my neurosurgeon, take a look at the MRI and see what he has to say about the surgery itself.  That will be the first time we've seen him since the week I was at the UVM Medical Center.  On Thursday, there's a long appointment with the radiation people.  They will fashion a face mask for me that will be used to hold my head firmly and stationary and in the same place for each of the radiation treatments.  I think we'll do a run through of what the treatments will be like and we'll get those scheduled.  What I do know is they will be for about twenty minutes a piece, five days a week, for six weeks.  When they will start, I do not know.  Soon, is what I do know.

Just as a reminder, we are doing radiation because going into this procedure we knew the surgeons were not going to be able to remove all the tumor tissue.  We all wanted to play it conservatively and not damage my optic nerves or any part of the pituitary structures.  Needless to say, Ann and I will know a lot more at the end of the week than I do right now about what we are looking at in terms of what needs to be cleaned up and how well we think we are going to be able to do that.  Best news today was confirmation that the tissue sample was indeed benign.  Yay!!!

Again, thanks for staying tuned in.  Your presence continues to mean a great deal to me.   I remain pretty much pain free and most of those stitches have fallen away.  Very unimpressive zipper now. And yes, I've set my alarm for tomorrow morning!

Monday, March 14, 2016

My Mom always used to say, "Oh my - I just don't know where the time's gone!".  Well, that's kinda what I'm feeling right now.  I can't quite wrap my head around the fact that my last post was almost a week ago.  So in terms of an update, I'm doing quite well.  Today I am mostly pain free and that feels great!  My heart has taken my relaxed state in stride and has struck a similar position in life, slowing down to about 32 bpm on Saturday night.  I self-diagnosed something weird going on and was driven to the ER to seek confirmation.  Indeed, something weird was going on.  We were there from 10pm until about 430 in the morning.  The docs think the arrhythmia was most likely caused by dehydration.  (I'm not a great sipper of water. Learned my lesson there.  Again!)  Feeling fine today and have finally admitted to myself this recovery is going to be longer than it felt it was going to be.  Listen to your body, Bone!

A shout out to all of you for lurking and writing.  A few have mentioned appreciating the arrangement of the 23rd Psalm I attached, arranged by Booby McF.  Here's another old favorite in a different wrapper:  Barber's Adagio by the Charlie Hayden Jazz Group.


Monday, March 7, 2016

Monday
March 7
Op+6

Hello Everyone:  I continue to do quite well.  YAY!  Am "resting" a lot.  That doesn't help much with full time night time sleep but my body is evidently getting what it needs.  I've been able to avoid the "oxy" painkillers which was a goal of mine - hi-dose Tylenol seems to be doing the trick.  In a few week's I'll begin six weeks of radiation and I've just started to make several "Radiation Rhythms" playlists to ease me through that part of the journey.  Ann has been very attentive and wonderful, attending to my needs, keeping the dog out from between my legs, and making sure the dizzying array of medicines somehow all end up where they should be at the right time.  Not so much pain now.  Just a bit from the muscle area above my right eye when I think or chew hard; maybe those two activities use the same set of muscles!  I continue to imagine you all singularly and in groups, extending your love and healing thoughts.  Me reaching out to you is connecting with you reaching back to me.  Thank you all for being in touch, whether lurking here on the blog, or by text message, or via email.  I'm getting to some of them, but not all.  Means a great deal though, believe me.  A light snow is falling - may not walk around the block today.  Right? Ann?   LOL

A picture of yrs.truly with Ann and Sarah, Ann's sister.  Love having her here with us.  (No zipper in this picture; taken a week or so before surgery.  That's why there are more wrinkles in my forehead!)

CR

Saturday, March 5, 2016

I am home

The friendly team of doctors came by yesterday morning early and told me I'd being going home today (yesterday).  I got home about noon, three days after surgery.  One word of advice and one gift from me for those of you who might be considering - or consigned to - hospital stays.  The advice: commit your birthdate to memory and also the name and place of your hospital.  If I had not been able to answer those, I'd still be answering all those questions about my "vitals".  And, if you haven't heard this arrangement of the 23rd Psalm by Bobby McFerrin, it's worth a listen.  He arranged it in memory of his Mom, and in the arrangement, made sure the voices reverberated in the cathedral within which it was sung.

CR

Thursday, March 3, 2016

You should see the other guy...



Charlie is remarkable. He's doing so well they've been considering sending him home today, but decided to wait until tomorrow. That's mostly to let one more day go by related to the possibility of seizures.  He's taken a walk around the loop of the ward and the nurses walking beside him had to tell him to slow down. 

Wednesday, March 2, 2016

So it's done...

   (Photo taken towards the end of Charlie's surgery, courtesy 
of Ann's niece, Leah, who is a 4th year Medical Student)

7:00AM Wednesday
Charlie's surgery lasted five hours and went as expected.  He had a good night's sleep before and went into it with an amazing sense of humor. Coming out of the anesthesia has been a bit of a challenge for him, but hour by hour he's become more responsive. His first smile was wonderful to see. The CAT scan at 12:00AM was fine, so another good indication. He is doing really well this morning, making funny remarks, asking lots of questions. What a guy!