Closing...

Hello All,

I finished up radiation on May 13th, a couple of weeks ago.  I took chocolate-dipped strawberries to all the hospital personnel who laid hands on me during the process.  Yesterday, I had a conversation with Jean, my radiation nurse who mentioned how much the berries had been appreciated.  Especially by Dr. Nelson who took them home to his children who LOVED them.  I thought that was nice.  So for all of you, here's a virtual strawberry!

(This shows the obvious drawback of virtual food.  About the only good thing it's good for is losing weight and sparking imagination!  You can't smell it or eat it or touch it or feed it to a friend.  But you can dream... .)

Thank you all so much for continuing to check in and communicate your encouragement.  Know that it was felt and buoyed me at various times during this adventure.  I did pretty well staying positive, but I couldn't have done it nearly as effectively without the support expressed on this blog.  There are still a few follow up hurdles to jump but in terms of the blog, I think today will be my final entry.  I'm left feeling grateful, actually - grateful the tumor was found when it was, grateful for my medical care, grateful to Ann for engineering the blog (Thank You Ann!!!),  grateful I decided to reach out and connect with you, people from many layers of my life, grateful I live in this country where (despite the angst we have for our health care system) we have amazing technology to do what I needed done, and grateful that I have an opportunity to think about the tomorrows that lie ahead and what I want to do with them.

In closing, Mary Oliver, once again, comes to mind.  And I'll leave it here with the question she poses in "The Summer Day," a poem that starts with a grasshopper and ends with the provocative question,

With significant appreciation,
Charlie

Hello Special People...

     I am fine and am three weeks done with radiation treatments - half way.  Fourteen days to go, but who's counting.   The radiation has been quite uneventful.  I show up, I am greeted deliciously and enthusiastically by all those involved, I hop on the table, we adjust my positioning, the mask is snapped on, the machine is properly aligned, they take an x-ray scan to zero in on the area to be radiated, readjust the table if necessary, and bingo! I'm radiated.  The mask comes off, I sit up, and we are done for the day - all in less than fifteen (or so) minutes.  Three or four zaps from different positions equals the daily dose.  The actual time I'm being radiated is less than two minutes.  The only side effect to date is a slight metallic taste that I experience every once and a while.

     I took my grand daughter Cianya (13 yrs old) with me last Friday.  The radiation crew took her through the whole process and she even got to see the control room and watch everything they did with explanations.  When I asked her how it was, she replied, "It was so cool."  And then she explained to me what went on in control central.  I thought it would be a great view of a world few people see (gratefully) and an eye to possible employment futures for her.  Plus, she's just fun to be with and it made that particular day special for me.

     On my walk to and from the hospital, I pass several forsythia bushes which are coming into bloom starting last week.  They are such a contrast against the blue, blue sky we are occasionally experiencing.  These also make the walk over and back, special.  Perspective is everything.

   



I so appreciate your hanging in there with me as this journey plays itself out.  The longer span of time between this communication and the last one was because my recovery has become pretty normalized.  Nothing particularly new.  Then I realized that some of you were concerned that the silence might have meant something not so good.  I'll not wait so long for the next post.  Honestly.



CR

The Mask

Hi Folks,
I thought this photograph might add meaning to Charlie's recent Nina Simone choice. Ann

Nina Simone - I Wish I Knew How It Would Feel To Be Free (with lyrics) - HD

Since bobby mcferrin got such rave reviews, I thought I might share this.  I get chills every time I hear her sing this Billy Tailor classic especially on a day like this.  If you can stop what you are doing and really listen, you will too.

And I promise I won't use this blog as an "Oh Gee, I guess I'll share this now" kind of place. But on the first day of radiation, this is a sharing I really wanted to do.

Thanks... .
C.

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

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!

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
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

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

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. 

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! 

Let's do this...

UVM Medical Center

Thursday, Ann and I had our last meeting with my surgeon.  No big surprises there.  I’d been gathering questions over the past week, writing them into an open booklet that lay on our kitchen counter.  This was so family members who are in and out of our home could add their two cent wonderings as well.  When I looked over what had been written, all were variations on an original set of questions generated back in January when we first learned my Spring plans were going to change.  There really is no new news to share here; just more detail about how the procedure will occur.  I’ll head into the hospital at 6am on Tuesday, surgery begins around 730 and is scheduled for five and a half hours.  It is anticipated I’ll be in intensive care for two days, then 2-3 more days at the Medical Center, then home.  The goal before heading home is that I’m mobile, that food is flowing in and out of my system, if you get my drift, and that I’m able to get around at home.  Move, move, move seems key to getting recovery up and running well.  With a firm, wide base, of course!  (Thank you Coach Smith!)  I’m ready.  Thank you for all your notes.  They continue to be like warm arms wrapped ‘round.  See you on the other side!  CR

Friends,

I feel your comments, literally.  I mean not all the time, mind you, but in quiet moments when I let my mind go to what each of you have expressed, I feel a warm embrace holding me close.  Not to go all "woo-woo" on you (as a good friend says), but just to let you know your words matter and have meaning for me.

So, I passed my pre-op just fine.  Have a final MRI scheduled for the 23rd and a follow up with the surgeons on the 24th, and then...on to the yellow brick road!  Right now, the waiting is the only thing that's hard - kind of like being in a fast car with a governor that keeps you at 28mph.  I'd like to be going 68 mph right now.

Once again,

Thank you all!

CR

Welcome Family, Extended Family, and Friends...

Thanks for coming aboard.  Just to know you are virtually out there is a really comforting thought. Feel free to use this however you want; lurk, read, ask questions, leave comments, just check in.  It's a way for us to share this journey in the days ahead, for you to stay updated, and us to feel we have a way to respond to your interest.  We know these next few months are not going to be a walk in the park but we have great confidence in the medical personnel involved, the medical center, and feel deeply that "everything's gonna be all right".   Love to hear from you if you feel so inclined!

Charlie and Ann