The Glory of GVHD...

Hey there Community

Wow it is a BEAUTIFUL and AMAZING spring day here in San Francisco. Thank goodness the sun is shinning and everything is so new and fresh.

The weight of stress and anxiety that I have been feeling for the past several weeks seems to be lifting and although I am exhausted from the onslaught of GVHD, I feel much more joy and peace.
See what a little praying and breathing can do.

I am in the "Gentle" Grips of GVHD. I had no idea I was going to feel so damn exhausted. Today I got to see a different nurse, Cheryl and even though she was the only one in Clinic today she was kind and patient and took a lot of time to explain a lot about GVHD to me.

The tiredness comes from the battle seen and unseen that is going on in my body right now. The New immune system, Christines, took a look around and realized it was in a very different place. So a battle has ensued.

Big time rash all over my face pasty mouth with little blisters, everything tastes yuckie.
My eyes are dry and goopie and things are blurry to read sometimes.
My shoulders ache
My liver counts are highish, but not alarming.

Cheryl explain that it is like someone who has Rheumatoid arthritis and fibromyalgia, my new immune system is having a little war inside my body. So there is a minor level of strange aches, constant sleepiness, and somewhat compromised for viral and fungal infections, since my immune system is busy doing other things.

But we are happy about all of this, it is minor and it is wanted, because in the process of this little war going on, if there are any cells we don’t want, those will be wiped out. It’s kinda like Chemo in a weird way, except I get to keep my hair.

I told this may go on for about 2 months till my body is used to the level of Tac (the immuno meds). Imagine that the Tac is like a horse trainer and the new Immune system is like a crazy wild colt that needs to be tamed. I loved that metaphor, thanks to Cheryl.

After all of this is said and done and my skin starts to clear up, I get to go to a dermatologists and get a facial that will remove any scaring from the rash.....I say cool SPA UCSF!!!
I don’t know that just made me smile.

So as usual after clinic I feel good about what is going on. I have full faith in what is going on. I know I am being taken care of in the best way for the best outcome.
I know why I am so tired, now I can be OK with it.

I had my 6 month biopsy on Tuesday, it went well. I won’t get those results for a little while.

I am where I need to be for my deeper healing, I feel at peace, I’m letting go of my anxiety more and more each day. I am here, and I am alive.

I hope all is well with each of you. I hope you are feeling loved and giving love. Thank you for all you love and support and prayers and well wishes.

Here’s to a Beautiful Spring day

Namaste
Victoria

Just a quick little hello...

Hi all

Happy Sunday. Maybe some of you had a Sunny Sunday.

I am starting to feel better today. Not as tired during the day. Still goopie to blurry eyes. But over all a little more energy.

I wanted to share this picture that my friend Liza sent of her, Brenda and I. I think this was taken maybe early Feb, I think.



Who says Bald isn’t beautiful!!!

Namaste
Victoria

Taking Direction from My Body...

Hello Sweet Sweet Community

It is Spring yet where you are?? I know parts of the East and Mid-west are still getting really cold days, even snow. It rained here last night, which is odd for this time of year.

I know all the flowers love it though. They just want to grow.

I feel very blessed that my body allowed me and Noah to participate in Brenda's Celebration of Life ceremony. It was held in Concord, CA., about an hour from here. We thought it was going to rain, but the clouds opened up, the sun shined and it was beautiful. It was held in the Rose Garden of this Country Club kind of place. It was just amazing. There were ducks and geese around. Humming Birds hovering above us. Tons of kids playing before and after.

She was in all those things and the hearts of everyone there.

So many people telling stories of Brenda’s last nights and days and the things she said and how she was with everyone. One story that was shared: She asked a friend...Why do you think god did this to me? Her friend responded, did what Brenda?...Her response was, Surrounded me with all these loving people!!!!!!

She touched so many people, and will continue to do that. What a gift it was to be there.

OK so for me and my health…

Counts are Great. Really good, gosh my platelets are over 300, thanks to those donor cells (thanks Christine), so my body is happily making blood for me.

I do have GVHD on the face, in the mouth and in the eyes; one liver panel is up a bit. So I am back on the same dose of TAC (immunosuppressant drug) in the AM and PM. In a few weeks I should be back to the energy level I had before and have no more rash or discomfort.

Doc martin is happy with what occurred and considers it minor so this means no going on steroids, which makes me happy. So I will be on this dose for a few months and we will try the weaning process again.

I am happy to take direction from my body right now. This means napping during the day. And 8 to 9 hours of sleep at night. I’m doing it too, which is a real change for me. Naps are usually hard to do, but I am doing it and it feels good and it easy. The Cats love it too. I get to keep them company while they are sleeping. So the 3 of us happily sleep in the coziness of our bed.

I’m Ok to rest. I want to heal more deeply every day.

So whatever I think I HAVE to do can certainly wait.

For the first time in a while I have no where I need to be until Tuesday morning when I go to clinic. So Im going to sleep, MAYBE walk, maybe make a run to get some fresh food, and watch movies. Its been nice to sit on the couch and watch Spring happen outside.

Life is good. I’m finding my center after an onslaught of many many emotional changes.

I am alive and breathing and making blood. I am loved and have so much in my life.

Noah is amazing and sweet and has been gentle and helpful. And we are both healing every day from the Trauma of last year.

Have a Beautiful Springtime Friday. It’s nearly 7PM and the Sun hasn’t set yet. I love this time of year.

Thank you for all your love and prayers and thoughts and all you do. Remember if you are up for it.... donate blood and platelets. If you haven’t contacted marrow.org, do so. It’s all so easy to be a donor and it is so needed.

I love you all so much.

Namaste
Victoria

Brenda...

Sweet Community

Just as I sent out my last post I received an email from Brenda's cousin.

Today around 5PM today Saturday April 14 Brenda passed over in her sleep.

Please keep her husband and 2 sons in your prayers as well as all of those that have loved her and have been by her side.

She is a shinning example of courage and beauty and Grace. And I know she is shinning that Beauty down on all of us.

What a teacher she is for me.

Thank you for allowing me to share that with you all.

Namaste
Victoria

A change of Pace and GVHD...

Hey all

Happy Weekend

Thought I would check in and give you all a little update.

It seems my bladder infection is getting a little better but the GVHD Rash on my face is a little more apparent. And my eyes are red and goopy and my mouth is dry.



Also just in general feeling more tired. Around 5pm or so I start to really slow down. In some ways I feel like I did right after the transplant.

I have some increased anxiety and worry. But I’m trying to breathe thru it all and keep a positive uplifting thought. This is part of the recovery process so my prayers are for this to be gentle on my body and that the treatment is simple and gentle and successful.

I guess its time for a change of pace and slow down a bit to meet the needs of my body.

Monday will be the last day I take my immuno-suppressant meds and some of the change in my body energy is also due to that. So the cords will be cut its time for the new cells to get along with my body.
"Play nice guys, I’m counting on you. Get in there and do your job and be nice to me, Im a human person who wants to live a full amazing life"

Big love to all of you. Big huge prayers of Gratitude for our very precious lives.

Enjoy the Springtime!!!

Namaste
Victoria

Brenda's Farewell...

My Dear Community

Below is a blog entry from Brenda. It is her farewell. It moves me so deeply to know this woman and to witness her Beauty, her courage and her Grace in the face of what could be so scary. She is passing with such truth and honesty. I can feel the peace and love in her heart. Thank you for holding her in such a sacred way. There is a part of me that is sad and even scared but there is a greater part of me that is grateful that she will be pain-free and full of peace and held. She will become a part of God and will continue to touch us in even bigger and more profound ways.

I love you so much my Dear Sister Brenda, thank you for teaching me what real courage and Grace is all about. Knowing you for this short time has touched my life deeply. I will never forget you.

*************************************************
I started this "technical error" journey with myspace after learning about something called AML in a small room with Miah, Karri, Jim and Dr. Salganick in Concord, CA. My boys were then just 6 and 8.

After feeling short of breath and tired, as I do today, I remain seated just as I was in a hospital bed then being summoned and knocked down by a deadly disease that would change my life in so many ways. Not only would it instantly humble me and make me feel invincible, it would subtract years from my life, scare friends away, add new compassionate ones into my life and inspire and motivate new people like no other.

I always knew in my life that I was here for a reason. My reason was always to help others. I told Dad that whenever I saw one of those” Help Wanted" signs in the window, I was the one that could fit the bill. I especially loved the Air Emissions Quality team sign and the Brown's Chicken's sign.

I could help, no matter what the job was. Anyhow, I ended up being a "helper".

I generally just helped. No matter who, where, what. I smiled and laughed and pretended I knew what I was doing. It didn't matter. As long as I felt I was included and on the center of a stage. Even if it was singing "BABY GOT BACK" in front of a large group!

Through these years I have absolutely NO regrets. I worked hard and played even harder. I never said a swear word, always went to school on time, and won the PE award in high school.

In fact, 3 days ago I just crawled up the stairs.

And now, I'm back in bed still hooked up, still using a commode, and wearing a purple t-shirt that says (in orange writing) "freakishly strong" while covered with a wonderful TNT blanket that was knitted for me just weeks ago.

Now I peacefully await and end the battle that has attacked my 36-year-old body surrounded by my most beautiful family and friends. Surreal, but true, this is really happening.

We all wait. Me, my family and friends that are here now, and all of you. Even though you're not here with me physically (it would simply be impossible for all of you to fit in this room), I want you to know I feel you and know you're here. I love all of you.

Thank you for loving and supporting me. Please continue to pour it out on my three boys.

Without that making much sense now, it does to me.

*************************************************

Namaste
Victoria

More news about Brenda...

Hello Dear Community

I just got an email from Brenda's cousin.
Today the doctors have decided to take her off all of her meds and are giving her 12 to 36 hours to live.

Please continue to pray for her spirit, and if it is time for her to pass over, please pray that the passing is sweet.
Currently she is surrounded by many members of her family. At Muir Woods Hospital in Walnut Creek, CA

I am enclosing the link to that beautiful photo video her friend created

http://www.emmahopkins.com/movies/brenda/

Thank you for all of your prayers.

Namaste
Victoria

Update on my Friend Brenda...

Hello Lovlies

I hope this update finds you with peace in your heart.

I have not seen a blog from Brenda in a few days so I emailed her cousin after I heard in clinic today that she was rushed to ER on Sunday.

I am told that she was rushed to ER near where she is living, not near UCSF. She is living about an hour and a half from San Francisco.

Many of her family members are flying in to see her and they are trying to get her into a Hospice, if she is strong enough.

Cheryl, her dear cousin, is simply asking for prayers.

I know we can all do that, I know how amazing your hearts are and how strong your prayers are.

Life is so sweet and so precious and so fragile. All we have for sure is this very precious moment, fill this moment with love and prayers for my friend Brenda Donato and her dear family, friends and caregivers.

Thank you so much for being you

Namaste
Victoria

"UTI"...."ER"...."IV"......OH MY!!!!!!!

Well community just a short up date

This afternoon (Sunday), I was still in so much pain when I Peed that I decided to go to the ER to get more extensive tests.

Good thing…They found out I have a very rare UTI ( urinary Tract Infection) that only about 5% of women get and is more common in men. Because they knew exactly what bacteria was causing the infection, they were able to give me exactly what would kill the little buggers.

I got 2 kinds of IV meds and was sent home after 5 hours with more oral meds to take.

UGH!!! IV's in the ER..... I was praying that I wouldn’t be admitted to 11 Long. I am here at home typing this email, so my prayers were answered. What a blessing!

Here’s to a good night’s sleep and peeing comfortably by tomorrow.

I love you all. Sweet dreams

Namaste
Victoria

One of those days....

Hey all

I don’t know where everyone is but today in the Bay Area it is just one of those days...its foggy, and cold and rainy. Although I do hear birds cheerfully chirping outside.

They don’t care its Spring and they are looking for action outside.

Inside here I am feeling kinda crappy. I have a urinary Tract Infection. I have had for about a week now. YUCK!! Hopefully the new antibiotics they just gave me will do the trick, cuz the last ones didn’t. They also gave me this pill that helps with the pain during urination and it turns my pee the brightest orange I have ever seen. Crazy.



My dear, dear body. Whew, it sure is fighting for me all the time. I love my body and my cells and my bone marrow and my new cells and my new immune System. Come on ya'll let’s fight hard here; get this infection out of my body.

I can’t ever remember having one in my whole life.
But I guess this goes with the territory of having a new Immune system and cells from someone else. They are very sensitive.

Thank goodness I don’t have a fever
Thank Goodness I can breathe
Thank Goodness my hair is growing back
and I’m in Remission
and I feel strong.
I am Alive!!!

Today I feel like crap and this is one of those moments in this healing process where, I don’t want to panic because I have an infection, but I do feel a little nervous that it will get out of hand. OK when will the antibiotics kick in…anytime now please.

So Thank God for the fog, to keep me in doors and resting. Thank goodness for the cold so it makes it easier to lay around.

I hope each and every one of you take the heed the weather sometimes offers us to slow down and just do nothing.

Big love to all of you. Big prayers to.

Here’s a picture that Noah took a little while ago. Look I have hair.

Namaste
Victoria

Hello all...

Hello Sweet Community

I know it has been a little while since I have written. I hope you are enjoying the beauty and transformation that Spring brings.

I have been feeling tremendously well. My energy often times feels bigger then my body and I have to slow down so my body can catch up. But little by little I am getting stronger in very subtle and really big ways.

I went on a retreat ceremony this weekend with my Spiritual Community and really let go of a lot of the suffering I have carried with me thru out this past year. It was very cathartic.

I got to a point where this joy and laughter came deep from inside me. I envision these little black bats carrying out those last pieces of emotional suffering in my body and right behind it was this tremendous joy. It has always been there. It is ALWAYS there.

I realized that joy and laughter and pure deep heart happiness is always there, its there for us always, it just gets buried and covered by our pain and suffering and all our worry. Sometimes when that pain and suffering has passed we forget to let it go, we still feel that heaviness, but we can let it go to allow the joy come fourth.
And oh my goodness it is so healing to feel that Joy. It is so full of peace. It is liberating!

I can be such a serious person sometimes and such a worry-wort. That just doesn’t seem to fit these days considering all that I have been thru. It is so much more appropriate to find joy in every moment, even when those moments are bittersweet. What a joy to feel those moments too.

I am so grateful for all I learned and that I got to learn in such a big way. Whew.

I think about how in the past I worry all the time. It seems inappropriate when I realize that Creator is right there taking care of me, of all of us all the time. We just have to ask and open our hearts and trust.

Thank you Community for all you have done and are doing thru your prayers and thoughts, for not just me but for everyone you pray for.

I learned from my teacher this weekend, or rather he reminded me, In a community when someone is suffering each person in that community takes on just a little of that suffering, and then soon there is none.
We take care of one another, whether we are near or far. There is so much power in thoughts and prayer and intention. Thank you for sharing that power with me and on my behalf and on your own behalf.

I am so happy to say that I CHOOSE LIFE. And it feels so good to say that and to be experiencing that.

Thank you to all of you for choosing life.

Here's to a beautiful Spring, to feeling our Joy, to letting the suffering fly out of our hearts like Bats in the belfry to make way for peace and more joy.

Life is Sweet, and so so precious

Namaste
Victoria