Friday, December 31, 2010

New Years Eve


Hello Revelers!
I've got 2 days off from clinic and am spending it with James. We shopped a little last night and snapped up some post christmas bargains. I scared the young kids in my mask!! My son Lyle and the lovely Katie came by for a snack and drinks and video chatted with my good friend Mari and the Lizama Clan in Spain and my art buds in Cville. James made some great soup for us. He's become quite the chef. I spoke with my doc on thurs and he says I can drive if I feel up to it (I DO!) and so if all goes well I'll be home by the end of March. Here's hoping to all going well. I'm still trying to stay in the moment! A huge task for me!! I 'm including a pic wearing a gift from Ian and Bridget. I think it's very fashion forward- no??
Happy New Years!
Beryl

Wednesday, December 29, 2010

Post Post Post

Hi,
It's been a quiet week in Lake Woebegone. I've had two days off and head back to the clinic tomorrow. I've been doing odds and ends (as long as it's sanitary!!) and resting a lot. James has been with me and has also gotten in a little rest. Today I walked on the beast for 30 minutes- uninterrupted- I'm pretty excited about that. I restarted taking an anti pneumonia drug I took about a month ago. It's very strong and I take it for two days then wait 5 days. So far no side effects which I'm really glad about. We went to the house yesterday and James pruned my roses for me. It's been on my mind and he tok care of it. Those roses worked so hard last summer and spring and way into fall. They were full of frozen buds. Imagine. Such hard workers!
On monday the physicians asst told me my chromosomes are ALL normal! 100%. So far so good. I take another bone marrow test next week so we'll see if the results hold.
Take care,
Beryl

Sunday, December 26, 2010

Post Christmas! Day 59

hllo,
I had a great Christmas. Ian, Bridget, Lyle an Katie came for supper which was cooked by Bridget. That girl! She made a tenderloin roast (organic butcher), roasted potatoes (2 kinds), roasted brussel sprouts, curry sauce, pecan pie and ginger bread! It was so good! It was a wonderful night- lots of good conversation and again...the food! It felt great. I'm a lucky lucky ducky. Today james and I slept until 11ish, had breakfast and yes......took a nap! What decadence. Now we're eating leftovers. So far a perfect day!
I am NOT going to do any work...I swear! Maybe a second nap tho. We bought a new juicer we'll try out later. I gotta eat more greens!!! Hemoglobin!!!!!!
I hope your Christmas was and continues to be wonderful.
xoB

Thursday, December 23, 2010

Day 56

Hi,
It turns out I did not have a staff infection- the labs reported two false positives! So there. I had my big fat day of antibiotics yesterday- I was in the clinic with my cousin Alice from 10-4:45. It was too long a day for me. However, there was a time before i started the drip when I had to walk down to radiation for a chest xray. It was a short walk but during it I felt absolutely ok. My pace was good, I wasn't winded. I just felt like myself. I think that was the first time I felt regular. It was great. I want more "regular" for Christmas!
I'm in the clinic again today to mag up and then I have THREE days off. I'm so excited. The fam is coming over on Christmas- Bridget is cooking so a feast is insured. We're ready for christmas- no tree (fungus!!!!!Germs!!!!!!!bacteria!!!!!!!!) but I do have a glittery snow man snow globe that changes colors and swirls glitter automatically. The chinese holiday manufacturers are geniuses!!!!
I'm working away on my on-line classes for Spring and I'm feeling pretty good about them. I'm going to work on them again this afternoon. I want to be READY!
Take care,
Beryl

Monday, December 20, 2010

The Fabulous World of Drugs!

Hi,
I did NOT have a crazy long day at the clinic today. They couldn't get my drugs up from the pharmacy so I'm getting the 5 hour drip on weds. I have one more dose of the at home infusion and I'm done with that. It takes 2-3 hours to administer and I do it twice a day. That is cutting into my nap time! I walked the beast today which feels good. I'm doing better at taking the stairs up to my apt too. When I first took the stairs I had to lie down for 10 minutes- now I'm just winded. Improvement, no???
xoB

Sunday, December 19, 2010

PS

Ian's birthday is today! Yesterday we (they) had a huge sushi feast at our apt. It was great- Lyle and Katie essentially hosted and it was a wonderful time.
xoB

Bumps for Beryl!

Hi,
The doc called me on fri night and called me in for saturday. I have two different kinds of infections and he wanted to pound me with anti-biotics. I started a new one yesterday and on monday I'll have a 5 hours infusion of antibiotics. Hopefully this will blast me out of infection city and back to Sollaworld. These drugs tire me out, that's for sure. I'm trying to hydrate to avoid kidney complications etc. James is taking good care of me and being awesome. When I married him I had no idea how great he was. I just thought he was cute and fun. What a mensch! This afternoon, if it's not crowded, we're going to World Market (in a mask of course) so I can look at shiny, glittery, colorful things!
xoB

Thursday, December 16, 2010

Thursday Dec 16th

Hi,
I went to clinic today in the driving snow!!! I had to get labwork done and met with the doc. He said according to my biopsy results my bone marrow is 100% donor which is amazing and fantastic. We came home and i celebrated with a long long nap. The snow is good for sleepy time (everything is good for sleepy time!) I'm about to hit the beast again. I'm becoming one with the treadmill. I'm trying to build up my blood too - more meat please! Things still taste a little off but I'm eating. eating and drinking and walking. I go in tomorrow for mag and a transfusion then I'll have sat and maybe sunday off! It's a weird life, no?
xoB

Tuesday, December 14, 2010

Dec 14th- Just a quickie

Hi,
I'm feeling really good. My med levels for a particular drug have been reduced even more and I feel much better. I walked 15 minutes on "The Beast" and I'm going to go for another romp. I had a non-clinic day which I spend with my friend, Barbara. She made me and James a great potato soup- perfect for this coooooollldddddd weather. Tomorrow i go to the clinic which should be mad fun.
To The Beast!
xoB

Sunday, December 12, 2010

Dec 12th Day 45!

Hi All,
It's been another week and I'm on day 45 since my transplant. It doesn't seem that long and it seems forever. My taste buds are getting less salt-focused. Sweet things taste more sweet and less salty which is a very good thing. I can also drink tea now which is huge. I go to the clinic tomorrow and expect scads of blood work to be done. I'm not sure what else- it's always a surprise. I worked on school stuff for Spring today and it felt very good to do "normal" stuff. I've been hounding Craig's list all week for a used treadmill and I got one today. James and Joe picked it up for me and it is a mammoth mofo! Katie and Lyle helped us muscle it upstairs. My docs told me last week I was losing muscle mass and would continue until I could exercise more. Knowing my wimpy florida self was NOT going to be walking in the cold with a mask on I decided I needed me a treadmill. This fat boy is it. Losing muscle mass....I don't think so- I'm WAY too vain for that! Bald and saggy???? Not an option and the hair is taking it's sweet time!
Let There be Light went super well and James is now a rock star AND my slave monkey! Two for two...very nice.
Take care,
Beryl

Thursday, December 9, 2010

Thursday Dec 9th

Hi,
I'm in the clinic. I had a sonogram of my liver and gall bladder today. They need to rename the gall bladder- jeez those are ugly words. Gall Bladder. Nope- I'm not liking that name. I 'm getting a little mag and also seeing the doc. Tomorrow is Let There Be Light. We're very excited about it. Fenella is taking over a lot of the heavy lifting. Everyone is pitching in. It's going to be amazing.
I'm feeling pretty good- no drama- no surprises. I did see some tiger cubs in my stomach during the sonogram. I asked the tech and she confirmed. I think that's what the doc wants to talk about. I'm concerned-- don't tell James!!
xoBeryl

Tuesday, December 7, 2010

Tuesday Dec 7th Pearl harbor Day Remain Calm!!!!

Remain Calm and carry On!
Hello Americans,
It's another day at the clinic. I received BLOOD, magnesium and fluids. I've been here way too long! I got here at 9:30 and it's 2:20 now. Sweet baby jesus wants me to go home. Pretty soon I think. I've been working on my hospital project today. It's a guide to going through this "event" for future patients. Something I wish I had had. I've been talking about it for months and today is the day. I'm going to go to the store with my brother, Joe, and get him some gloves and a hat and scarf. Floridians!!!! He's here for 3 weeks and I want him to stay warm and well! This friday is Let There Be Light at PVCC- 6-9pm. This will be the best year ever. Check it out- you will be super jazzed- it's outside of the Dickinson building and features 19 artists doing light based artwork. Hot Chocolate and snacks will be available in the Dickinson Commons. The faculty show and Stacey Evans' Tracking People shows are up in the galleries. Both are wonderful. Seriously, best faculty at ANY art school in Virginia. (modest, as ever- I really think we're the best in the region!!)
Stay warm!
Beryl

Saturday, December 4, 2010

Saturday at the Clinic


Hi,
I dropped in today for an alleged "quick visit". Ha! They tricked me! I'm still here. They think I might be getting too much of a drug and wanted to test me.
We're gearing up big time for Let There Be Light. James is all light all the time. I'm doing what I can from a distance- I'm probably just annoying people!
My brother is on his way - maybe in that old cutlas. Nah- he's cruising up in the Bnz. Miami Style!
The pic is of Ian and Bridget backstage with Emmy Lou!
xoB

Friday, December 3, 2010

I swear I posted yesterday!


I have no idea what happened to it. Maybe it' in "the clouds" as they say. Nothing exciting. I spent a quiet ay with my friend nancy. I am really getting the hang of these naps, I must say. Today I went to the docs. My platelets are falling- 108 but my white blood count is good 7.1 and my red is around 2.85. I'm not sure if I should be glad or what- they say the drugs are keeping my platelets supressed. I'm about done with these drugs. I stop one kind and get 2 others! My friend Stacey is with me today. It's been really neat having these simple days with friends. I'm going to enclose a photo I sent my bud Angi a few months ago. No, I have NOT grown hair back. My body seems happy to stay bald!!! How cant his be? I'm half Italian now!!
xxooB

Tuesday, November 30, 2010

Tuesday Nov. 30th


Hellooo,
I receive a package today from my good friend Silvia. This package has been following me around for 3 weeks. It's a glittery shiny Carmen Miranda turban complete with fruit! I'd put it on now if I wasn't tucked into the couch with James. Suffice it to say, it was MADE for me! Thank you Silbia!
My friend Laura cared for me today. She was great. She made a great turkey burger for dinner- so far so good! I go to the clinic tomorrow so I'll fill you in on numbers then. I lazed around today..what a baby! I'm enclosing a little 15 year old cheesecake complete with braces!
xoB

Monday, November 29, 2010

Monday in Richmond

Hellooooo,
I'm in the clinic today for a long day. It's past my naptime! I had labwork done, got a chest xray and am getting some magnesium and a little blood. My hemoglobin dipped! The freekin nerve! I'm getting some fresh hi test. Last night james and I drove to the Ivy Post Office and dropped off some stuff at our house. It was fantastic. The christmas lights are wonderful and my house is perfect. I still have roses blooming. I knew I would! I was so tempted to prune them BUT I didn't. Those babies have bloomed in the snow- I swear. I'm going to have James prune them for me in late winter so they'll kick butt in the spring. I planted over 250 tulips and dafs this fall before I went to Richmond so I am expecting a spectacular spring showing. I miss my house so much. It's BIG!
I'm off tomorrow and my friend Laura is coming to stay with me. I hope to refrain from heavy online shopping!
xoxoB

Saturday, November 27, 2010

Saturday

Hello!
Sorry for the delay- no big story- just doing the regular stuff- growing bone marrow and blood cells. We had a great Thanksgiving. Bridget made an outstanding meal with support from Katie and Lyle and Ian. James also baked a pumpkin pie (high adventure) and made a great salad. I ate and rested, rested and ate. I laid on the couch like a carp! I was like a baby! A lazy, selfish baby! Rob and Anna came by for a visit yesterday. They looked great. Anna looks gorgeous- she's full of baby energy. I should get some of HER blood! She's freakin vibrant!
Today I'm in the clinic getting labwork done and some mag. There's talk of giving me magnesium in pill form so I would come in even less! I had two days off and enjoyed every minute. I had TWO naps yesterday!! I am living so large.
There's talk of taking a little drive down to cville to look at the Christmas lights on the Ivy post office and nursery. If you've never been- it's pretty magical. I look forward to it every year. (such a bad, bad Jew, but it's true.) My fiend, Gloria is recommending the Richmond Tacky Christmas light tour. I'm excited about it!
That's all from me.
Take care,
Beryl

Wednesday, November 24, 2010

Weds. Update

Hi,
I'm in clinic today. James is of getting me refilled with meds. This place is BIG and I would get soooo lost- It's up to james. I was just looking at yesterdays photo and remembering how I use to set my hair with orange juice cans. Gianormous rollers! How did I sleep with those on my head. I love the way my hair looked. Good thing I'm bald or I'd start drinking frozen OJ again and collecting cans!
My numbers are good and I'm going to get TWO days off. I'll chill thurs and fri and go back in on saturday!!! Bridget and Katie, along with Lyle and Ian will be doing the cooking. James and I (mostly James) will bake a punkin pie and salad. I'll be on the couch enjoying the aromas.
have a lovely thanksgiving. I'll be full of turkey AND gratitude!
xoberyl

Tuesday, November 23, 2010

Carumba!


Hi,
I'm sorry I missed a day. I may have been taken aboard a space ship and probed. I think something like that happened or maybe I was a lazy bum. Either one....not so good. I went to clinic yesterday- just got a little magnesium. All my counts are looking good. My platelets went down about 10 points but that's normal. Today I walked for the first time. James and I walked about 1/4 mile followed by a climb up the apt steps. May I say I am VERY glad we're on the second floor, not the third. I'm going to start visualizing me as Rocky on the steps of the capitol in Philadelphia, jumping up and down like a wild thing. Maybe I can skip the actual exercise and just visualize...no???yes???? I also did a little yoga (really- not just in my head). So I'll ret to increase a little each day until I have some stamina.
Stay well!
Beryl
PS The photo is of me and my brother in somebody's cutlas. Maybe we stole it- that part of my life is a little hazy....

Sunday, November 21, 2010

Sunday at Home

Hi,
It's been a quiet sunday at home- no clinic. James ran around like a wild thing shopping and doing laundry. I put together a shelving unit to help organize the apt. The apt is very comfy- there's almost a place for everything which helps in the day to day.
It makes me anxious to not know where things are and we don't want baby getting ANXIOUS!!!! I worked a little on school stuff too. Th art club is doing a tote bag instead of t-shirts this year and Rob just sent me the file of the student artwork that we'll use. The student is VERY talented and the image is killer. It starts production tomorrow and should be in VA before the semesters over (I hope). I can't wait to see it. I've also been buying up design textbooks on line. Older editions of a good book so we have a classroom set for design. This is the sort of tedious stuff someone who has time on their hands does. So.....I'm doing it. So far I have 8 books! Some I got for as cheap as 1.94!!!!!! This is going to be great for the students. The current edition is 120.00 ish! Too much!
That's it for me.
Hasta manana,
B

Saturday, November 20, 2010

Saturday in Richmond


Hello,
I hope you all are well. I'm in the clinic today getting "mag" magnesium (hospital hip talk) and some red blood cells. My counts are a little low so they are pumping me up. I'll be here a little longer than usual but I can take it! JAMES IS with me today- we're both on the macs, getting stuff done. Regarding the platelet numbers- the nurses/Docs use the lower number to talk about the counts THe real count adds 3 zeros so my platelet count of 238 is really 238000. More hip talk and I'm determined to be hip!!!
xoB

Friday, November 19, 2010

Another day off!


Hello Blog Monkeys,
I had a another day off from the clinic today. So far it's been great. I showed some stuff to Bridget on photoshop and then she made us lunch and shopped while I napped. I napped for 2 HOURS! Now I'm working on my Obama project and it's coming along nicely. I'm going to lift a little weights and I've done a little yoga today already (thanks Jofe) Tomorrow I'll go to clinic and see what's up. I've been keeping up my visualizations, meditations, affirmations and eating. My friend, Susan, wrote me a funny little thing she says when she thinks about me. It harkens back to the 70's culture- a time of wonder and magic. She imagines my bone marrow growing and thinks "Wonder twins powers, Activate". ISN't that the best? You know I'm loving that. Now I say it too and I imagine Wonder Woman clinking her gold power bands and saying "Wonder twins powers, Activate!". God, I love that!
I'm attaching a photo of me and my brother Joey. He was 17ish almost 18 and I was 16, I think. Jeez! MY cousins LEE and BARRy sent this to me. I'm feeling the love!
xoxoxoBERYl

Thursday, November 18, 2010

blog Monkey!


Hello,
It's another big day! Lyle (my son) is my caregiver today. He updated my mac and took me to the doc. My lab work is good...ok great. Platelets 238, WBC 3.8 Hemoglobin 8.1.
I have tomorrow OFF AGAiN AND I'll be back on saturday. I feel pretty good- def more energy and I'm loving spending timw with Lyle!
xoB

Wednesday, November 17, 2010

WEDs. UPDATE



HI,
NOTHing to report- my puter has a stuck cap problem so my typing looks like I"m having some sort of episode. My daughter-in-law, BRidget cared for me today. SHe did a million errands and made me a fabulous organic beef stew. SHE"S so amazing. AND PLeasant company too! I FELT OK today. MY Energy is not where I WANt it but I know I have to be patient. I Made 3 flannel pillow cases today. WHITe background with big pink roses on the fabric. DOES that have SOlla written all over it or what!!
TODAy is my mothers birthday. I'm uploading a picture of her and her younger sister and her beloved father- who I Was name for. HI AMerican name was BErnard and his hebrew name was BERYl. THANk you for contining to send me your good though and energy and prayers. I know it's one of the reasons I"m thriving. I Feel it in my....wait for it....bones!!!
LOVE and gratitude,
BERYl

Tuesday, November 16, 2010

SO good, so good!

HElloooo,
MY dear friend John Grant was my caregiver today. He was my first non-fam caregiver. He did great. HE took me to the clinic, made me lunch, got me snacks, took the laundry to the cleaners etc etc. It was a great day. MY platelets are now 218 AND I don't have to go to the clinic tomorrow at all because I'm doing so well. ISn't that amazing!!! This is a giant deal. I was just released 6 days ago. I AM flushed with gratitude!
xoxoBeryl

Monday, November 15, 2010

Not That I'm Bragging BUT.....


HELllooo,
MY platelets are 200! My WBC is 3.5 and RBC IS 2.74. Respectable, no?
I'm in the clinic for magnesium today. It will be in and out. Then a little shopping and home and nap.
BAM!

Sunday, November 14, 2010

Platelet counts

182!!!! The normal range is 172-440!!!!!!
BAM!

Sunday Sunday Sunday!!!


Hi,
I'm back in the clinic this afternoon. We strolled in at 1:00 after a longggg sleep and nice breakfast. I don't know what my counts are yet. I feel great. I'm easily winded but I'm still moving. This afternoon James and I are going to dance.
I had a dream about a new piece of art I want to do. I 'm drawing in my drawing book I have so many ideas. It has been a long time since this happened. I also came up with a variation of a show James wanted to curate a few years ago. I'm in a state of excitement.
oxoxoBeryl

Saturday, November 13, 2010

Saturday!


Helloooo,
So I heard the opening at PVCC last night was fabulous. STACEY"S show is so strong and powerful. The faculty show- sweet Mama! We have an amazing faculty and it's all visible on the walls of the gallery and the walls of student work on the 1st floor of the Dickinson Building. I heard the opening went like clockwork thanks to Fenella and her team of Susan, Jeffrey and Evan. The show is up until Feb. and I bet 50.00 I'll be able to slide in and se it before it comes down. At breakfast this morning I appeared bald and in my readingglasses. I asked James if I looked like a brainy Martian and he said, yes, as a matter of fact, I did. NOW he says I only "looked" brainy!!! WHAT!!!!
SO I'm in clinic today, I don't need any saline fluids maybe little magnesium. My kidney function rocks! James is with me today. After clinics were going to finish off th organic chicken soup Bridget made for me and go for a drive. I feel amazing and I'm grateful you guys are with me.
xoBeryl
PS I"M rocking the Little Stephan look in my frency french scarf!

Friday, November 12, 2010

In THE World!


Hey,
I slept like a tiny precious baby girl last night. I asked james to wake me every 2 hours but he refused!! Imagine? I'm in the clinic today.I"ll go everyday until things start normalizing and then I'll start skipping days. It's very chill. EVERone is dressed for the real world. I mos def am the cutest girl in the room. I'm rocking the boots and tights- a less tasteful version of my friend JENNy K> at school. I are breakfast and lunch without "event" So I'm happy. I HAve my cute linch box from CHACHAs. STill competitive!
MY platelets are...wait for it.....118 today. I could sell some I have so many!
MY art buds from school sent me a card from my students. They festooned it with feathers and glitter and wrapped it with flamingo paper and glittery ribbon. My people!!!!!!
xoBeryl

Thursday, November 11, 2010

This is it!


Hello Blog Buds,
I'm bathed, I have on my Gynun Hat (Star Trek Whoopie Goldberg, yes? No?) and I'm mostly packed. James came last night and packed up most of my stuff. I have a few things to sort out,home care, yucky stuff and I'm done. James will be here at 4:15 to wisk me and my HUla Girl Lamp (from Cha Chas!!) away. I feel excited and nervous!!!

Wednesday, November 10, 2010

Cliff Told me This Would Happen


hello!
One more day left. I've been answering email, working on my big Obama project and I took a two hour nap. Can you believe it? I'm becoming really really good at naps. Who knew?
So,my great boss and great friend, Cliff Haury, told me when I lost my hair to chemo it would come back differently. he said it might be wavy or almost like lambs wool. It might be natural color (I have no idea what THAT is) or it might be a new color. Imagine my surprise this afternoon when I woke up from my nap. I know I'm doing well but I thought it would take more time to fully grow in. I think i was the organic juicing or maybe the mad chemo. Either way, this seems to be my transitional look.
I'm still set for release tomorrow!!!!!

PS May I just say....

My family is so important to me. Everyday my heart expands with love and gratitude for so much but mostly for James, Lyle and Ian Katie, Bridget and my brother Jofe. It's a rare blessing to be surrounded with so much love and support. One of my many lessons has been to allow others to "do" for me. It's very hard but I think opening up that 2 way door is a blessing to everyone. My family is doing everything for me and it feels so good and safe. My friends are calling me and praying, sending me things and taking care of business and holding me in their prayers and hearts. I saw a video from school last night and cried. My Dean and friend Cliff Haury, send me a gorgeous book that will help me so much. It feels cinematic- it's so full and satisfying. And (not to be shallow) my fashionista friend Laura is bringing me a pair of crazy cool shoes. I can't wait to rock them!! I will be the cutest girl in the clinic (depending on the clinic). Caramba! I can't help but be shallow...sorry!
xoxB

Seriously How Lucky Am I???


Hello Blog Buds,
It's early Weds morning. I woke up about 5 am and wanted to spend some time on my Obama project. It's coming along really well. I have 5 completed posters and more to work on today. I think a big part of my recovery is working. I'm lucky like a duck that I love my work. While trawling through facebook this morning I contacted several more artists to invite to the project. In the process I found a photo posted from 2000 years ago when james and I were in a Blues band. Fat Chance Blues Band. Oy. But I must say we were pretty back then. I'll post the pic. I'm on the left and James is right behind me. I was wearing a floral shirt. Imagine??? I'd snap thing up in a New York minute today. On health news.....My counts as of 11/9 10:48Pm are
WBC: 13.9 (sweet mama!!!)
RBC: 2.74
Hemoglobin:8.8
Platelets:44

Seriously- These docs and nurses are miracle workers! The bubble of care holds tight!

Tuesday, November 9, 2010

Guess who is engrafting????


Hello Blog Monkeys
Oh my God. The docs came in this morning and Dr. Toor (very serious very brainy and dear) said Ms. Solla, You are engrafting! That's the point of the transplant- you kill off the patients bone marrow, introduce a donors bone marrow and manipulate the event with a byzantine medical protocol that is precise beyond comprehension. The send your blood overnight to Seattle (The Hutch) the number one bone marrow center in America) to analyze the blood develop a specific streamed line protocol and adjust the meds by the next morning. This is big science. So with the help of big science, big God and the prayers, visioning and love of my family and friends, tapping, accupucture, meditation, Healers, EMDR...... this little monkey is engrafting!!!
And how is your day going?????? Here's another picture of me with new hair. This is how you really know I'm getting better. I swear I woke up this way!!!!

Monday, November 8, 2010

Flash!!!!! This just in!!!!

This morning the docs were very optimistic, it may have been my cowboy shirt and mod hat BUT they are saying if things continue the way they are going i will be asked to leave the hospital THIS THIS THIS THIS Thursday.
Oh my sweet Mac!
oxoxoB

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

Sunday, November 7, 2010

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

Saturday, November 6, 2010

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

Friday, November 5, 2010

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.

Thursday, November 4, 2010

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!!!!!

Tuesday, November 2, 2010

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

Monday, November 1, 2010

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

Sunday, October 31, 2010

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)

Saturday, October 30, 2010

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

Friday, October 29, 2010

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


Thursday, October 28, 2010

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)


Monday, October 25, 2010

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

Sunday, October 24, 2010

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

Saturday, October 23, 2010

Last One

More Pics


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.

Friday, October 22, 2010

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

Thursday, October 21, 2010

29 more to go

Hospitals are weird. Their starting to turbo load me with drugs.
Yikes!

Bam!

Hello.
I'm in the hospital and full o' ports. If anyone needs to give me liquids- just plug on in! I'm on anti viral anti fungal anti pneumonia drugs.
I'm in a tiny room with no bicycle but the charming Dr. Chung is going to try to move me, This is the first time I've met him and he's great.
James is here with me. We had a little nap together before I got "ported".
So I can have visitors anytime- just check with me please to make sure I'm not feeling crappy. They say the first 4 days of chemo are ok. I still have hair. I'm going to shave in a few days. (it looks really good - winter hair!)
So far so good.
Take care,
Beryl

Tuesday, October 19, 2010

Lift Off!

Hello,
So the tests are fine and I am going in Thurday morning. At 10am I'll get my ports in (I'll be wifi ready and I can charge all my electronics!!!) and check into my room by 11:00. (hmmm)
My mailing address while I'm in the hospital is

Beryl Solla
MT Unit-North 7
1300 E. Marshall Street
Richmond, VA 23298

I should be there until thanksgivingish. Then our apt. (which is looking pretty great) is
11210 Ashford Lake Place Apt. 222
Richmond, VA 23233.
Our apt phone number is 804-935-1720
my cell is 434-953-7217
James is 434-960-5606

Again, thanks for your help, your prayers and your awesomeness!
xoxox



Monday, October 18, 2010

Tomorrow and tomorrow!

Hi,
I took my cat scans today. The doc said I should have the results by tomorrow (tues) 2:00ish. If I'm infection free, I'm good to go. James and I moved with the help of a lot of friends and our family. Many hands. The apt. look pretty good. It was a great idea to get an unfurnished place. (I am a little crazy about home stuff). We slept there last night- it felt ok. I need to start packing for the hospital. There's so much to do when you leave for so long.
I'll let you know what's up when I hear something.
On saturday we went to a jewish deli right near the apt "Boychicks" It was deli-tastic! I'll post pics of the apt. tomorrow.
In health!
B

Wednesday, October 13, 2010

So far So good!


Hi,
I finished my last round of chemo (the easy stuff) yesterday. As my future daughter-in-law, Katie says, "Check!". I'm scheduled for a final cat scan on monday. We've set up the electric, water, gas, phone and almost internet at the apartment. We're set with a truck for the big move on saturday thanks to Rob Tarbell and Anna Von Gehr. Ian and Bridget will employ their awesome bus driving skills to get our stuff to the apt. My brother, Joe, is organizing the "FOB's". (this reminds me of my friend Marla who coined the phrase "FOM" I'm feeling nervous but I also think this is going to be a mix of dreadful and wonderful. I think there will be a whole lot of wonderful. I've been hearing from friends and really feel the substance of their good wishes and very, very real help.

Saturday, October 9, 2010

okay......


Okay, so as of today I am set to go in on Oct 21st (thursday) and will have a week of chemo then the transplant. We're planning on moving into the apt on oct 16th. so James will have a place close by to sleep. I started on the anti-viral drugs and anti-monkey drugs so i should be safe from viral monkeys or Monkey Viruses (virusi?). Either way....safe!

Friday, October 8, 2010

It's All On! (I hope)

Hello,
So the donor cleared today and I think it's proceeding. I haven't talked with the big doc yet- we're playing phone tag. I'll share as the drama unfolds.
Yikes,
Beryl

Wednesday, October 6, 2010

Hellooooooo

Hi,
So the latest is that the donor needs to have some tests updated (maybe because it has taken the Bone Marrow Center so long to do it's paperwork??). This will happen on fri and theoretically the results will be sent to Richmond on monday. In the meantime I'm not taking anymore meds or taking any more tests until I have a confirmed date. My Richmond doc hasn't commented on this yet. I'm on chemo for the next week so I'm hydrating like a fish!
Argh,
Beryl

Thursday, September 30, 2010

The latest

Hi,
The Drs. say some of the paperwork has come in but not all. They want me to take another cycle of chemo and have another CT scan. They have a TENTATIVE admission date of oct. 18th. They are stressing the tentative.
So, who the heck knows.
Take care,
Beryl

Wednesday, September 29, 2010

The mystery is so mysterious!


Hi,
I know nothing!!!!!Nothing!!!!!! That's fine- I'm going to take up drinkin and gamblin. These life lessons can bite me!

Tuesday, September 28, 2010

Crickets Chirping......

Hi,
So the Bone Marrow center has not given the final clearance for my donor. The reasons are unknown at this point. It may be a paperwork glitch or it may be a problem. My back up donor also has some problems .........
so I am not shaving my head tonite (actually Bridget is not shaving...) I am not going into the hospital tomorrow and I am on hold for maybe a short time, maybe a long time. It is a big mystery.
I hope you all are enjoying the suspense as much as I am!
In the meantime my Dean (awesome Cliff Haury) and my colleagues and family are just rolling with it.
Stay tuned!!!

Monday, September 27, 2010

so pretty!

It's like a dream come true...

Hi,
Still no confirmation on the approval from the Bone Marrow Center. I'm not shaving my head till I see a signature! So it's still a big maybe for sure perhaps possible looks good kinda deal.

Friday, September 24, 2010

It's a go...maybe??

Hi,
According to my pre-transplant coordinator we have an e-mail stating donor approval but the big Bone Marrow Transplant Center has not signed off on it yet. This is as far as I got last time. I'll share when I know more. I'm proceeding "as if" everything is on.....maybe.
My test at VCU was quick! No math, no science!!!

Thursday, September 23, 2010

No News

Hi,
I just heard from my Pre-transplant coordinator that I won't hear today about the donor. They would like me to come in tomorrow for more tests. I just hope they aren't math tests!!

Tuesday, September 21, 2010

Thanks to my Buds

Hi,
I'm still waiting on the final word re my donor. I told my drawing class good bye tonight. It was hard- it makes it more real. I'll meet my other classes one more time. I've been getting copies of notes you all have sent to my brother and I feel very, very grateful for your friendship and support. You've shown me amazing kindness and I'm thankful for it.
xoB

Sunday, September 19, 2010

Getting Ready

Hi,
I'm packing clothes and scrubbing out my vases to take to Richmond with me, working in the garden, potting stuff to send away, doing laundry, returning library books, finishing things.
James is in florida seeing his Mom before the transplant.
I'm loving my IPAD. I'm all apple all the time now. I told my bone marrow doc about it and he was jazzed.
I'm on 4 new meds- anti viral ant fungal. One of them was giving me hallucinations when I closed my eyes. They were beautiful but kept me awake and apparently hallucinations aren't a good thing (who knew?) so I'm off that (VFEND) and will try something else on monday.
I worked this week with Bridget on her and Ian's porch. We tiled her design and it is gorgeous.
Take care,
B

Friday, September 17, 2010

Donor Tested

The donor had blood tests this week. the results will be in by Sept. 23rd (hopefully). If all goes well I'll enter the hospital on Sept. 29th, have a madcap week of xtreme chemo and then transplant on Oct 7th.
I had a bunch of tests in Richmond yesterday- always a treat!

Sunday, September 5, 2010

Things Are Still On track

Hi,
So far things are still moving towards the Sept 29th Hospital date. I start a new round of Chemo on tuesday and go to Richmond for pre-transplant bloodwork on Sept. 16th. Yikes to the fifth power!

Wednesday, September 1, 2010

Donor resurfaces

Hi,
I received this message today:
"The POTENTIAL donor has agreed to donate!
This 39 yo Male is in the process of having labwork and his history and physical scheduled and done.
We have been told to expect Donor Clearance 9/23.
The tentative time frame, pending FINAL DONOR CLEARANCE is:
Admit 9/29
Transplant 10/7 "
So IF the tests are all ok I have a date. My last two donors didn't make it past the final testing so it's still a possible date- not cast in stone.
oy.

Monday, August 30, 2010

Whole Lotta Nuthin Going On

Hey,
Apparently my donor (39 yr. old male who I believe to be Johnny Depp) is avoiding the transplant centers calls! No one has heard from him- off making a new movie I guess. The second donor is standing by. I haven't heard if they'll start testing him/her. So... I'm gardening.

Saturday, August 21, 2010

Info from my brother, Joe!

AND JUST SO YOUR BUDS KNOW: - CONTACT ME (JOE SOLLA) AT JSOLLA@COMCAST.NET OR WWW.JSOLLA.COM OR 305-888-6160 OR 407-317-7149 TO COORDINATE DATES FOR POST-HOSPITAL BABYSITTING DUTY. (WHEN WE HAVE A GOOD DATE FOR ADMISSION AND AN ESTIMATE OF WHEN SHE'LL BE OUT).

Friday, August 20, 2010

Aug 20th update


Hi,
I just heard from my transplant coordinator. She thinks I'm heading to transplant soon. They have a good donor but still need a few more tests and then have to coordinate with the donor and the Bone Marrow Transplant Center. I think it's still 3-4 weeks away at the earliest. Nothing is set, though. So this is a note essentially saying (as my friend Rob might say with irony) I'm fixin to get ready.

Saturday, August 14, 2010

Background Info

I realize I haven't told a lot of people what will happen so here's some background. In June, 2009, I had my annual physical and the Doc found my blood levels were wonky. We pursued it and I was diagnosed with Myelodysplastic Syndrome with Excess Blasts level 2. This is a rare disease and uncommon in people my age. If left untreated it will likely become acute leukemia which is fatal. So the cure is a bone marrow transplant. In order to put me in remission and prepare me for the transplant, I had to have chemo. I've been taking Vidaza (my chemo) since August 2009. I've tolerated it really well and had help from my family, nutritionists, my Integrative Medicine Doc, my accupunturist (Jody Forman) diet, exercise, EMDR, meditation, visioning, energy healing and prayer.
The transplant:
When my donor is approved I'll go to the Massey Cancer/VCU Hospital in Richmond, VA and have a week of intense chemo. This will kill my bone marrow. I'll rest a day and then be transplanted with my donor's bone marrow. It will be transfused, like blood. Then I will stay in the hospital 3-4 weeks under close observation and under maniacally sterile conditions until the transplant starts to take hold. I will have no immune system, so infection is the big issue. When my blood counts start to go up and the docs agree, (3-4 weeks) I will be allowed to go "home". James and I will rent a 2 bedroom, 2 bath apt in Short Pump, VA. We need to be near the hospital (no more than 20 minutes away). I'll have to go to the hospital regularly to have tests, be checked on, etc. Without an immune system I will be very vulnerable to infection so they'll watch me very carefully. I'll wear a mask in public and when I'm around people. I won't be able to be in crowds or eat out. I also won't be able to be alone, to cook, clean or drive. I'll be on lots o' medication and touching any unprepared foods could threaten my health. My family and some of my good friends will come stay with me for various lengths of time. This part is still in the planning stages. My brother is going to organize that. James will work in C'ville and come to Short Pump after work. After 5-6 months I should be able to go back home to Ivy. I'll be able to do more, and hopefully I won't need so much help. I plan to continue working as soon as I can by teaching on-line. My bosses at school (both the Dean and President) have been wonderful. My colleagues have been amazing.
So...as weird and awful as this all is - I still feel great and I'm very optimistic. I've made a few great friends who have gone through this scary process and they are back in the world - doing fine.
I think this covers it. As my Nia teacher, Susan, says, dance through your troubles. My plans, exactly.
In Health,
Beryl

Temporary Blog

Hello,
I'm starting this temporary blog so my dear buds and fam can get the latest info on my transplant. As of yesterday, Aug. 13th, two new donors were found for me. They are both perfect matches (10/10) Testing will begin soon on the first donor, a 39 yr. old man. If I get his marrow, I expect to become very hairy and and start liking football. (joke!)It's my understanding that 6-8 weeks is the soonest I can expect to get the transplant BUT that's all super iffy. I'll post when I know something. In the meantime, i've just finished a round of chemo and celebrated my 1 year chemically enhanced anniversary. I feel great, and plan to go back to school on monday. I'll work until I have to go to the hospital.
My brother, Joe, is making me a kick ass website complete with webcam and calendars. When that is up and running I'll send you the site address.
Thriving,
Beryl