Day +10

Hey,
I'm posting early today. I work up at 6:45 and slept alot last night. I think I feel a little rested. I did NOT exercise yesterday but i WILL today.Okay my counts as of last night at 6:00.p m
wbc white blood count) 0.6
(red blood count) 3.19
platelets 29.10
hemoglobin 10,0
neuophils 69.9
This is the first time we've seen this number. In the past it said "unable to report". I think these numbers are astonishing. I haven't talked with the docs yet however my nurse (another in a long row of smart dedicated and charming caregivers) said I might be looking at going home in a week (next mon) instead of fri nov 19th. I can't tell you how excited I am. I feel so optimistic. In fact after I heard my numbers last night I was on line looking for a pair of glitter wigs (for obvious reasons) and found a site of very styiized hair sculptures for those who wish to express themselves in song and dance. My affinity should be obvious.
Your friend in hair,
B

Day +9

hello,

Day 9. My latest counts are climbing. Slowllllllyyyyyyyyyyyyyy climbing. Platelets 44 White Blood Count 0.1, Red Blood (my fav) 3.18. Boooya!

I'm having trouble sleeping still. I get up at about 3:30 and stay up usually. Maybe I should post then! Actually I often answer e-mails and work. Night before last i spoke with my friend in Spain. It's a weird magical time. I'm emotionally more direct and always spend some part of the time praying, tapping, meditating and listening to my Bella Ruth healing tapes. It's a very unusual time for me. Also I plan my garden in the side yard. Roses and berries for as far as the eye can see. I can't garden (am I repeating myself??) but I can design and hire someone to do the foundation. I'm getting a great bonus from school and it's going to pay someone to do the heavy lifting on this. Bam! Decision made!! My brother Joe (Joey) is on the prowl for a couple of used guitars. We use to play together as teenagers and we're going to play again. We rocked the folk scene. Puff the magic dragon, oh yea, 500 miles, get it!!!!!

I'm going to eat my apple sauce and cereal, continue shedding my stupid hair and dance around and annoy folk.

Thank you healing friends.

Love,

Beryl

Day +8

Hellooooo

So I'm an 8 day old baby today. My white counts are starting to rock forward. Two days ago I had a white count of -0.1 and last night i had 1.2- I think. This is how it starts. The platelets start to build (I'm at 39 I think - yesterday) then the white blood count. I feel an odd sensation in my legs the past 2 nights. I believe I feel the bone marrow engrafting. I could be high on chemicals but that's what I believe. the docs and nurses are blown away by my progress. I just saw a fortune cookie I got about 6 month ago- I brought it to the hospital. It says "Mighty forces will come to your aid". Check!

My innards are starting to realign in a recognizable fashion and as you can see, I'm rocking the headware. My shaved head is starting to shed. I see it in my little caps i wear to bed. All moving according to plan. I exercised last night- only 40 minutes on the bike but i still feel pretty good. I spoke with my dear bud Mari today on the gmail video phone. So cool- Mari in Spain, me at the Richmond Hilton. So cool.

So I'm growing and shedding and feeling great. Please keep your good wishes, prayers visualaztions coming. I believe that is a big part of my healing success. I swear I feel your pull when I do my visualizations and meditations.

xoxoB

Day Plus 7

Hello,

So I spoke with the Docs during rounds today and had a really great talk about healing and all the contributing factors. It was really satisfying. Most Docs don't want to hear anything put medicine and only medicine (don't get me wrong- thank you medicine!!!) So it felt meaningful and substantial. Dr. Toor coined the phrase "Compulsively Compliant". That's going to be my new middle name. In the picture to the right is my nurse Lily. She's so attentive and smart. I don't know how they get and keep so many good nurses here. Lily is a GREAT nurse. And she has hair! When I say her name I think about my bank of red and orange lilies at home. What a perfect metaphor.

So it looks like things are going really really well. Dr. Toor thinks we are on schedule for a pre thanksgiving release. He's thinking (God willing) November 19th. I'm pretty excited. I'm crazy excited. etc etc. So things are going well. Every day a little better. Last night they untied me from "Johnnny" by pole o meds and I got to dance around like a fool for 45 minutes. I thought of my Nia teacher, Susan M. and just went kookoo. I feel really good. James calls it Beryl 2.0- it feels that way to me too. My friend and colleague, Fenella, told me she thought this was going to change me. Her husband went through very serious and intense back surgery last year so she knows this close up and personal. When she said it I thought how could I change? What would that look like and feel like. She was right. I am changed. No matter what happens I've had the back of my head and heart blown out and opened up. I've been renovated. And I feel blessed like crazy.

Helloooooo,

So it's two weeks in the hospital. It's been weird and magical in a very odd way. This process is humbling and kind of beautiful. I feel the substance of your thoughts and prayers. You know I'm not a spiritual kind of gal but I'm in flux- no doubt. I'm up all hours of the night- that's when they give you blood and platelets and watch you like a hawk. There's also excessive peeing- every 1/2 hour (I swear) so my sleep patterns are wayyyyyyy off. Along with that comes some very transcendental moments. So it's been interesting. The nurses and care partners are fantastic. They are charming and engaging and very professional. The transplant protocols are micro refined and everyone is on board. Lord knows, I am. I've been using every resource to help with the healing and it's coming along. I had toast today and it was transcendent. Who knew? I've been working on lots of digital stuff- Lyle and Katie's wedding graphics and the poster for the upcoming Let There Be Light with James. It's pretty pretty pretty good! I skype with my sons and the "girls" alot,(and grand kitties and pup) see James everyday, talk with my brother everyday and skype with my girl buds too. I feel very plugged in and am soooo grateful for the mac, the Ipad and the ipod. I love me some apple. So I'm doing ok. Please keep sending me your good thoughts and prayers- they are mos def a part of the bubble of care and hope that I live in. I think about my chemo nurses at Martha Jeff too and feel grateful they set the bar for care so high.

In It,

Beryl

Ps Mr. Demille.....I'm ready for my close up!!!!!

Vote you Monkeys!!!

Hi,

It's me. I'm going to post a little and then nap. I voted early this year and sent in lots of $$. Please vote!!!

I received platelets last night (1:30) which is a big deal. This is how they begin to rebuild me. Bionic??????? ok! It went very well. This morning I'm my usual hot mess but a nap will help.

Please keep me in your prayers and see me in kick ass health. (Having tea with TomPeriello!)

xoBeryl

A Good Low

Beryl is now at the lowest count of both platelets (cells that promote blood clotting) and neutrophils (white blood cells that fight bacteria) count which is effectively no immune system, and which is where the doctors want her in order to allow the new bone marrow to take hold. She's not allowed to blow her nose or brush her teeth to avoid bleeding. She's a little scared knowing she's so vulnerable. She doesn't want visitors at this time to make sure there's no danger of infection. With all of that, she rode her bike for a half hour and is mentally more clear. She's focusing on meditating, visualizing and listening to guided imagery CDs. Please send energy force fields her way to protect her at this vulnerable time. Thank you all for your continued concern and well wishes. James

Paranormal Activity

I'm sleepy, sleepy, sleepy. I appreciate all you love and prayers. Keep them coming. I'm visualizing, praying and meditating, bicycling and sleeping. I haven't been able to eat today. Doc says that's part of the deal. James and I watched part of Paranormal Activity to celebrate Halloween and I'm scared. I'm going to go to sleep now. (Reported by James)

Me So Tired

GI issues are in full bloom. I was on the bike, walking the halls and listening to music this morning. I slept a lot today. I generally feel OK as long as I'm not racing like a maniac to the bathroom. James brought me treats, but surprisingly no jewelry. We watched a little of the Rally for the Return to Sanity and/or Fear, which was wonderful. At this point, we're not looking for visitors until I feel better. Thank you for your continued prayers and energy. I feel them and I'm grateful for them.

Love,

Beryl

Pretty Girl

at 3:00- In 15 minutes I'll be a new persom with 39 year old bone marrow~

I look like this now!!

Today is THE day!

Hello all. . Ian is here and James and Lyle are coming soom. I'm glad for their company and love. Today is The big day, The tranplant cells are in the hospital It shoud happen after 2:00!!

Pray for me

x0 Beryl

Greetings from Beryl: Day -1

I had a tough three days. Lots of nausea today. Had anxiety attacks yesterday and the day before - most of which was a reaction to the chemo. I was sedated for those two days which made it difficult to blog. Bridget, Lyle and Katie visited, and of course James. I had my head shaved by the beautician, here. Tomorrow is Day Zero - the day of the bone marrow transplant which should happen around two o-clock. Please keep me in your thoughts and prayers.

XO B (written with help from James)

day -4

Hi,

I exercised on the bike today and used the hand weights. I did some work, checked e-mail etc. My friend Lisa came by for a great visit, also Lyle came by (after he fixed my scanner at the apt) followed by James. He brought me some good healthy frozen food from Whole Foods. I've hit my limit with the hospital food. Can't do it anymore. I'm feeling a little queezy tonight and plan to get to bed.

B

Day 26

Hi,

Things are ok here. Still very little discomfort. I worked out a little with weights (James brought me my "vitals".) He also fixed the stationary bike and put up a hook in the bathroom for me. Plus he's doing my laundry every day. Seriously, I'm keeping him! I skyped several times today. It felt great. I did some design work for Lyle and Katie. We skyped the changes. It worked well. Rob Tarbell gave me an assist too. I also did a little school work. It's weird how fast the days go by. I'm glad I brought so much stuff to do.

I'm half way through the chemo. I'm drinking like a fish still. It really helps.

The nurses and care partners continue to be so helpful and careful with me. I've seen Dr. Chung, one of the transplant docs, every day so far. He's brainy and charming. I'm looking forward to this all being a weird story from long long ago.

Take care,

B

Last One

More Pics

1. 

I swear they are right side up in IPhoto!

For some reason (me dopey on drugs) I can only upload 1 at a time.

Day 3!

Hi,

I'm still rolling through the drugs. James is moving into the apt. which i looking pretty good. Art makes it home, mos def. I exercised a lot- biking, squats and dancing around and punching (carefully because I have 4 intravenous lines working on me) I am loving all of my electronics. I skyped with my friend and colleague Bill yesterday and my bud Laura. It was just like a visit but without the germs. When my counts are low the docs definitely want me to be isolated. So I'll be skypin and typin.

Lyle and Katie are helping James do the final move and sort out all the electronics (thank God) What a task.

So I still feel good. I met my neighbor yesterday. A 2 year old boy, Jamir (I think). He kept looking at my shoes and I felt a little self conscious. I should have brought some snazzier footware!

Here's some photos of the apt. It looks even better now. These are from the first day we moved the big stuff.

In the night

Hi,

So a good day, overall. I did a little school work (I can't help it!!) and email stuff and learned to edit in IPhoto. Nothing fancy but it's good. Bridget (my fab daughter-i-law) finished drawing the art work for Lyle and Katie's "Save The Date" card. I'm going to work on doing a hi rez version of their mock-up (which looks really great). How happy am I to be working on this?

I walked a little today- not too much of an area is open to me, and did 75 squats. I am going to TRY to stay fit. I'm still drinking like a fish and my port wound in healing beautifully. The nurses are great. Everyone who I've talked to (transplant folks) raved about them and they are right. I love the Dr. Chung. So overall I feel very lucky to have this range and level of support. Medical, spiritual, family and friends. As Larry David would say, "Pretty, pretty, pretty good."

xoBeryl

Day 29

Hello,

I am still wacky with drugs. So so many! Last night I was on a super dose of dialantin (sp??) When I closed my eyes I could see the stars from outside my house. It was spectacular. I imagined looking at them with James.

I started the chemo today. They have a very firm schedule and they stick to it. They do vitals (blood pressure, temp and oxygen levels) every 4 hours which is ok. The whole idea of "vitals" is significant.I'm drinking water like a fish. The nurse, Len, says I'll be less spacey as the dialantin leaves my system. I'm not a fan of the woozy.

I haven't unpacked yet. I'm still slated to move later in the day.

I took a shower- apparently you are suppose to unplug your med machine before you bath. It was very confusing. They have a chair in the shower too. I asked for a table in there so I could work on my laptop while I showered... Apparently THAT's not ok either.

I'm slowly learning the culture.

On the drip,

Beryl