Hello friends and loved ones…
Here is a long overdue update about Dean.
I am sorry it has been so long.
Dean continues to be very tired, often nauseated, not gaining any weight.
He is playing music at home, when he can. He walks every day, does PT and OT, eats what he can.
He is amazing with his self-care and strength… that being said, at times he gets so sad and angry… this is long and long and exhausting.
And it is often very lonely.
He is being slowly weaned off Prednisone- once he gets all the way off that, he will wait a couple of months, and then begin to taper down the other medications he is taking. It will be an amazing and wonderful day when he does not need to take ANY PILLS AT ALL. Something to look forward to.
Dean has continued to struggle with abdominal pain- sometimes extreme.
So, after many different doctor visits, a couple plans have been put in motion. (The BMT doctors are not convinced Dean’s pain and nausea are caused by GVHD. So- they/we needed to look for other causes and solutions.)
Dean is having monthly infusions of a blood protein called IgG (I think this stands for immunoglobulin). We all need this blood protein to support our immunity- and Dean’s levels have been very low. This will hopefully help with abdominal pain and nausea.
Dean will be having his gall bladder removed.
This will help with the severe abdominal pain- the pain that has sent him back into the hospital three or four times now.
This surgery is scheduled for May 17, at 10:30.
Like any surgery, this has risks.
Please, send prayers, positive energy, healing thoughts… whatever works for you/feels honest and true… to Dean as he goes through this surgery and subsequent recovery.
Those are the nuts and bolts of what I can tell you.
Other things to write about…
Dean is still unable to work- for a whole constellation of reasons.
However, he is playing guitar at home, when he has the strength and the energy- and what he is playing soaks into my heart and heals the hurt and tiredness and the fear. I don’t think he realizes how often I fall asleep on the couch outside his music room, when his music makes it possible for my mind to be quiet and calm for at least a little while.
I wish so much you could all be hearing him, too.
Family members keep coming into town to offer practical and emotional support. This is an amazing gift.
Marcus Wise showed up one day and fixed our front steps and sidewalk. Out of the blue. Thank you.
I have been told there is another benefit being organized- for August, I think.
I don’t know how to say a big enough “thank you” for that.
I want to mention that Dean’s children, Dugan and Claire, have been going through this with us, and I can’t really imagine what it is like for them. If you have a moment to send some extra love their way, please do.
And most of all, I thank you – from the bottom of my heart – for your love, your prayers, your support- for being part of the web that holds Dean each and every moment in an ocean of healing and light.
Love
Megan
{ 10 comments… read them below or add one }
Megan,
Do you use Skype? That would make it possible for Dean to talk to people and see them without risking infection. I can’t imagine how lonely he must be now.
Dean and Megan – Sending many positive vibrations from Dallas, Texas…. Curtis & Loretta
Dean, I sure have missed your slightly demented sense of humor and cackle, and the sweet sounds of your guitar. The Cedar has not been the same without your regular presence. Keep on the healing path, and know we are all walking there alongside you. Be seeing you!
Brian
Dean – I hope everything went really well Monday and that you begin feel less pain.
We are all pulling for you, every one of us!
Steve
Dean,
I was just working on the riding lawn mower you “broke in” here at the farm in ’95 – it’s still going. I think of you whenever I’m near it. The fire ring awaits your visit.
In love and beauty,
Chuck
Hope getting rid of that gall bladder is making a difference. It seems so unjust that a soul whose music and personhood has comforted so many should be uncomfortable in any way. The two of you will always be my role models for dancing with the things you cannot change. My love and best hopes are always beaming your way.
Hey Dean, we’re all thinking about you over here in France too, hang in there, wish so that I was a little closer to do something, playin your cassettes and feeling like you’re there in the car – we WILL walk around Paris again and enjoy it.
All my love, and thanks megan, I’m so glad that Dean has you.
Deano;
Still thinking about you. Glad the operation is over. Glad you’re still playing. Glad Megan is the lucky one who gets to hear you. Glad that when you finally get a chance to record the music you’re coming up with during this period my name will be the first on the list to buy a copy. I’ve even got a title that you can use … and I’ll tell you about it later.
Hi Dean, Megan, Sending love your way. Thinking of you both so often. I have pieces of Art around me from benefits for you that bring light and warm thoughts of you. Your music continues to bouy my life. Thanks so much, praying for your healing, strength & being. – Janet
dean,
hey man, ive been a fan of yours for a few years now and i cant begin to tell you how much of your soul i hear in your music man. its really an inspiration and its safe to say your one of my biggest ones. i didnt know you were going through such a thing until a few minutes ago and it really shocked me. i tried to get a hold of you about 2 years ago hoping you could help me learn foxfire/kilnamona. amazing amazing song i really have to say. i downloaded your tabs off candy rat and learned it about a week ago. its really one of my favorite piece of music. point being, i wish you strength and well being. im 20 years old, majoring in music and hope to be as good a musician as you, dean, i really mean that. your like the friend i never met. stay positive and maybe keep inspiring. thats what makes the world go round.
sincerely,
Brandin Angon