Burning Balls of Fire...

Good Evening Dear Community

I know it has been a little while since the last update. I have been contemplating what to write.
But mostly it feels like I have to giant balls of fire in my eye sockets instead of perfect happy moist eyes. Hence the challenge of writing sometimes.

And I guess to tell the truth I’ve been moving from being mopey, to fired up, to tired, to weepy, to frustrated, to all out exhausted and spun out a bit in head.

This is GVHD and it is letting me know it is here and doing what it is Supposed to be doing.

Ouchie!!!!!

I never would have realized how uncomfortable having this kind of eye trouble would be like
Eyes are good and precious and they should be moist.

The Graft vs Host is getting better in that my skin is clearing, counts are near normal ( except for the tricks the Prednisone plays on some of them).

But man oh man it feels global warming is going on in my eye sockets. It’s a funny thing because things aren’t as blurry, but the eyes are now dry. So it IS improving.

So reading, computer, even TV at times strains the eyes. Sun and generally being outside and out about for too long causes them to dry right up and burn. I’m dripping artificial tears into them about every 15 to 30 minutes and putting cold compresses on them to cool the flame.

The Prednisone is playing with my moods and my need for food. I want eat about every 2 hours.
The prednisone (along with prayers, positive thoughts and Divine interaction and cooperation) is correcting everything. So though I complain...I feel better then I did last week. And I know I feel better next week.

Thursday I’m getting this "simple" procedure done where the eye doc, a sweet Man Dr. Naseri, will put tiny plugs in the tear ducts the drain the tears, and will open up the ones the produce the tears. So we are creating little damns in my eyes. Cool…and can we do it now…this very minute!?

The day is Thursday.

The prednisone (a steroid) puts me in full on project mode, well my mind at least and the eye thing exhausts me and forces me to nap.

Gosh this is a healing that occurs over the arc of time and sometimes I wanna break free, and just be one of those people walking around, hair blown in the wind, seemingly with not a care in the world.

But this is the new normal and I am committed to my life and my healing. And I am very good at keeping my commitments

OK no more complaints

This past weekend, I went away with 10 of my girlfriends. We rented a house on Bodega Bay, CA. We cooked tons of food, walked a little but mostly just hung out and talked, watched the Bay in the distant and watched a big family of dear graze outside the window. Napped. I was loved and nurtured and cared for and told to stop when I was over doing it. I came home to my sweet husband, blessed out and rested.

On Saturday, armed with my meds, 2 boxes of eye drops and my sweet Noah, we are off to Detroit ( actually Eastpointe, MI) to see my parents, family and celebrate my Grandmas 89 b-day. We will be there from Saturday the 19 till Wed 23rd. Yippie I get to leave my quadrant and be somewhere. Same routine but different surroundings

How lucky are we to see my family. And to also see and thank all their friends in their community and at their Church.

So this week is all about extreme amounts of rest, following all the rules for Self care, no overdoing it, big prayers for wetter eyes, and my heart-felt faith that every day things are improving.

Take the clue from your wise body that when its time to rest, rest…our minds are too pushy sometimes and they often misguide us.

If it’s raining take a nap or curl up with a book, if it’s sunny go on a nice casual walk after dinner.

Have a good wet cry.

Know I always feel your love and it means so much

I’m in Remission

My body is loving me and doing this mysterious thing to deepen my healing.

I’m all for it.

Have a beautiful evening

Namaste
Victoria

Tripping on Prednisone..saying Bye to GVHD..Blissed out...

Hey lovely Community

I hope all is well in your world. It has been HOT is SF....in the high 70's. So where ever you are I hope you are enjoying your life.

I cant go out in that sun and bask in it like I used.... my eyes are a bit messed up from the Prednisone and it all makes the skin extra sensitive..

This is an interesting Medication. I feel so so so hyper, but my heart doesn’t race. I just feel like I want to do a million things. It’s hard to sleep at night but I am sleeping.

I am not complaining. I’m on a low dosage, I won’t be on for long, after less then a week it is taking care of my body.

Now I am learning about this drug and the changes are creating in my body, even it is for this moment.

I feel like I have a little buzz going...It’s humorous at times but then I also feel worn out so its hard to slow down.

I like that I can feel the changes, then I have aligned myself with it and talk to the energy of the Medicine and ask it to take it easy on me when its doing it job.... and it listens, along with Creators help :)

Yesterday I got to visit 2 of my friends who are on 11 Long. Keith, who just received a bone Marrow Transplant, after searching for years. He is doing well; He’s very feisty, and ready to get out now. He seemed to have a lot of fear in his heart when I would talk with him in clinic. But he is calm and grateful and at peace now. He is so sweet, him and his daughter made me beaded earrings and a bracelet I tell him you are here, look how much you have been fighting for 3 years, and here you are and you can do this. He has a dear dear heart.

Then I visited this young woman Andrea, 20 yrs old, whose Leukemia came back. She is the Light and Spirit of that floor right now. They have allowed her to have her 4 month puppy with her at all times. and she was glowing and happy when I saw her. She said the puppy is helping her a lot. I believe it.

I didn’t know her very well before that visit but I feel like she is my sister now. Dr. Martin is her doctor too and she shared that he got very emotional with her and has hugged her while she the sickest in bed ( I love Doctor Martin)

She loves animals and lives on a dairy farm down south 4 hours. She said when she gets out her Dad is buying her a Llama. How could you not love that!!! I love Llamas too.

I was on the floor for 3 hours. When I got out, although I was so tired. I felt so blissed out and grateful. To know these people, to have a community I can talk with and listen. To understand the needs when you are trapped in a room and are not in your life.

I thought: I feel very lucky to know this part of life. People are so amazing and courageous and faithful and loving and fun and funny. But we are all fighting to survive, to keep our life to do the things we want and hope for.

I realized this is how it should always be Cancer or no Caner, a heartbreak or a happy relationship, What ever life decides to give u there are ways to find hope and joy and laughter and community and Faith in all of it.

I am so grateful for that reminder and for my Body and spirits ability to go to that Temple and see those people.

It always makes me so happy to see my friends at clinic and meet new people.
It is a different world for sure. But it is part of my world now.

When I returned last night after my visits I got to watch this wonderful show on Discovery Heath. “Ted Koppel’s Special Report Living With Cancer”

I was afraid to watch it alone. But that show too gave me such a peaceful sense. I highly recommend it. Some of the things the people living with Cancer talked about is what I think about from time to time.

I think the show is helpful for survivors, people living with Cancer, Caregivers, doctors nurses.......people that never been around cancer in their life.

So please check your cable listing.
Discovery Health Living with Cancer with Ted Koppel

I would love to write more but my eyes are so blurry right now. Time to give them a rest.

Thank you all for loving me and my family and praying for me and my family and holding a really good thought for all my doctors and nurses and caregivers.
I have so much love in my heart.
I am Alive
I am Happy
Its spring
Its an amazing day to be alive

Namaste
Victoria

Free National Marrow Donor Program...!!

Hey all

I’ll write more later but I wanted to forward this to you. This great news and free and easy and you could save a life with your beautiful amazing cells

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Great news! Starting May 7th the National Marrow Donor Program is typing people for free!

In an effort to help all patients in need, the National Marrow Donor Program kicks off its national Thanks Mom Marrow Donor Drive on Monday, May 7, with a goal of adding 20,000 new donors to the National Marrow Donor Program Registry in two weeks.

Thanks Mom will run May 7-21 and sponsor free marrow donor drives online at marrow.org and in more than 350 cities nationwide.

Anyone between the ages of 18 and 60, in good health and willing to help any patient is eligible to join, free of charge, from May 7 - 21, at a donor drive in their city or by registering online.

Visit http://www.marrow.org/HELP/Join_the_Registry/Join_in_Person/Find_A_Drive/index.html to find a donor drive.

Or Visit: http://www.marrow.org/NEWS/Events/Thanks_Mom/index.html for more information about the drive.


Namaste
Victoria