Put that party on pause

Hi,
I just heard from the VU docs who, even tho my tests are perfect, want me to continue chemo for 4 more months, 5 days instead of 7 and at a lower dose for maximum outcome. argh
Still great news overall but I did totally count my eggs.
argh again,
B

Halla-freekin-luya!!!

Hi,
Apparently the chemo has affected my ability to spell things correctly! Anyway- the test results are in early! They are perfect! No issues- all donor!  No wacky chromosomes! I have two more rounds of chemo (starting today) and then POW! Done!! I'll be on observation etc for a while but these are the results I prayed for.
Grateful Grateful Grateful,
Beryl

Tomorrow is the big day!

Hi,
James and I head off to Richmond tomorrow for my bone marrow biopsy. If I am 100% donor cell, marrow and no mutated chromosomes I'll have 2 more rounds of chemo and be done. I should get the results in two weeks,
Oy.
Wish me luck and perfect chromosomes!
Beryl

Just finished this round

Hey,
I just finished this round of chemo on Sun. It takes me a few days to get back to myself. I go to VCU for the BIG bone marrow biopsy on Monday Nov. 9th. If all my cells are PERFECT I will have two more rounds of chemo and hopefully be done!!!!!! (YESYESYES) If there is even a single bad cell, I stay the course and keep getting donor blood and chemo until the cells are perfect. The test results take at least 2 weeks to come back.
Fortunately  I am busy with the new house renovation (James and I start tiling the bathroom this Sat.), school, and of course, Baby Thomas, the cutest, smartest, sweetest baby in the world. Here's a photo!

Seriously- that's one sweet boy.
I'll let you know something when I know something. Keep me in your prayers! If you don't pray- buy me cool shoes.
xoBeryl

New cells...done!

Hi,
I had my second and hopefully last infusion of my donors cells last Thursday. It took forever but everything went well. The new cells increase my risk of Graft vs Host (mild to fatal) but I am optimistic I'll be okay and I'll be cautious (no exposure to direct sunlight, etc). I'm juicing, gobbling herbs, exercising, meditating, visualizing and soaking in the love and support from you all. I also bought some fabulous new shoes as a commitment to health and a long future. I'm still teaching- doing okay with that- keeping up- not embarrassing myself more than usual, working on the new house and making a lot of art. I feel great during two weeks out of the month and the other two weeks I run slower but I still work. My next bone marrow biopsy is November 9th. That will reveal everything. If I still have the one bad cell or more, I will continue with chemo and have more donor blood infusions. If it comes back clear (my preference) I will have at least two more rounds of chemo, maybe more. The Richmond Docs make the plan. So keep me in your prayers and I'll do the same for you. May I add that I definitely married the right man.
Your friend in health,
Beryl

September's chemo done!

Hi,
I finished this month's chemo on sunday. I still feel weird but I taught on tues and will teach weds and am trying to get normal. On Thursday I go to Richmond for my second and hopefully final cell infusion. These are the donors cells. They have been frozen since 2010. I felt great during August- I had almost a whole month off. It's comforting to know I can spring back. We are building our dream house in town and we see baby Thomas as much as we can. He is a sugar dumpling angel baby. AND starting to walk!
I am looking forward to the weekend- the chemo taste should be gone and my energy should be back. Thank you for keeping me in your thoughts and prayers.
Take care,
Beryl

Almost Perfect!!!!

Hey,

I just spoke with my UVA doc and he had the test results. He said they did 4 different tests and in all of them I had only  ONE single abnormal cell. I am 100% donor bone marrow again and 100% donor blood! When they grew out my cells to check for my cellular irregularity I had one bad cell out of 200. So the news is excellent. He thinks I'll have 2 more chemo rounds, a dose of donor cells, 2 more chemos, a bone marrow biopsy and blood work and then two more rounds of chemo. The protocol may change but at this point that's what they are planning.

So- things look great.

It takes a village and I thank all of you. I'll continue being as diligent as I can be and kick that one freaky cell to the curb!

Beryl

www.youtube.com/watch?v=zBlbox_cpKc

Big Test today

Hi,
So we went to VCU for the bone marrow biopsy and blood tests. We'll know something in 2 weeks. Oy. I'm feeling good- the next chemo round starts in a week from weds so I'm feeling good and making art, spending time with Thomas and James and enjoying the last week of no school!
I'll update when I know something. Thank you again for all your positive thoughts and encouragement. It makes me feel like I'm in the middle of something rather than alone.
Thanks,
Beryl

Day 7 of 7. So far so good. I am very happy to be at the end of the cycle. I did okay- better than the last time. It's still no fun though. I'm looking forward to  my 3 weeks of blue sky. I saw Jody, my lovely accupunturist today so I'm feeling like a pincushion. Maybe I AM a pincushion. Keep those good thoughts coming. Bone Marrow biopsy on August 10th. Oofta.

In the middle of the 3rd Round

Hi,
Sorry it's been so long. My weeks between the chemo are good. Every day better than the last. I've been teaching on line and making stuff- tiles for Bridget and Ian and my brother, Joey and the new house-  and pillows for Bridget. Baby Thomas has a cold so I have to keep my distance. I also got a tick bite so I'm on antibiotics as a prevention. I'm about to head into day 4 of 7 this morning. I don't love this but it could be worse. I'm tired but I'm able to do what I need to.  I exercised all last week and will walk this Monday. Maybe not for long but I'll do something. I think the exercise increases my energy. My biopsy is in a few weeks. Then we'll see what's up. I'm doing my best to get this MDS out of my body, along with negative energy and feelings. The doc says even if my biopsy shows that I'm 100% engrafted I'll need to do 2 more rounds of chemo- just to make sure. The VCU doc said to plan on a year. That's the average. I'll do what I need to to survive and thrive.
Take care,
B

All went well

Hi,
So it took all day- a lot of waiting but it was okay. They are starting me with a "primer" dose just about an ounce of donor cells, to make sure nothing crazy happens and prepare my body for the next infusion. The protocol is 2 rounds of chemo, a dose of donor cells and then a bone marrow biopsy to see how it's all going. The doc said the average time is one year if all goes well. I have my biopsy on Aug 10th and the results come in 2-3 weeks later. I need to be on guard for graft vs host as the new blood cells are introduced. The doc said people typically get some kind of G v H but not all and there is a range from mild to severe. I didn't have any the last time and of course that's my goal here.

I was getting very anxious while waiting for the blood and James did some EMDR with me. He's amazing.

I feel good today- I plan to do a little house work and then work out at the gym. It feels like a normal day.
I start my next round of chemo on July 22 and it goes through the 28th.

Please keep me in your prayers and thoughts (in a good way!)
Take care,
Beryl

PS the doc told me 5 years ago they made the patients go through a complete transplant again. They had a 5% survival rate. So scary. They changed the protocol and that's what I'm doing now.

Tomorrow....NEW CELLS!

Hi,
So tomorrow we (James and I)  go to VCU at 11:00 for my new cells. Remember in the last Hobbit film where the reinforcements came in at the end to save the day???? Same kinda thing. These new cells will reinforce my B Positive blood and beat down those ugly monstery guys. Send me your love and strength. Let's nuke this thing! I picked this bouquet for us! It smells like heaven.
Love,
Beryl

last day of 2nd cycle

Hi,
I had my last round of chemo today. This second round has been much better than the first. I'm mos def moving slow BUT I'm not depressed and freaked out. I'm so glad it's over too because I know how fast I'll bounce back. I am READY to bounce. I see my integrative doc and nutritionist tomorrow and I saw my acupuncurist (Jody Forman) yesterday. Next Monday I get a dose of cells. I'm a little nervous about this. I have no idea what to expect.
Thank you again for all the kind calls and emails. They help. I imagine being held up by all of you.
Take care,
B

2nd round starts tomorrow

Hi,
So I felt better and better each day when the 1st round ended. This past week has been completely normal. I'm full of energy and have been making art, gardening, being with the family and hanging with Thomas. My daughter-in -law, Katie,  did a wonderful father's day brunch and that was so fun. I am surrounded by the good. I've been seeing Jody Forman, my acupuncturist every week and doing lots of complementary therapies.  James is. as always, my best ally and best friend. I start my second round of chemo tomorrow and I'm less frightened and freaked out this time so maybe things will go more smoothly. My check ups went well the last two weeks. I didn't need a transfusion, which surprised the doc. My blood counts were lower but not terrible. I've been eating lots of greens, exercising and juicing like a mofo. I've included some pics (for Tony Raven) the top is Bridget and Ian's new backsplash which Bridget and I did together, me and Thomas and his duck after a bath and Thomas encouraging you to become an evergreen member of WNRN. (he really doesn't care)  I'm optimistic and also aware that anything can happen. I appreciate your kind and loving thoughts. They carry me.
Take care,
Beryl

feeling better

Hey,
So it takes a few days to get over the nausea and general crappy feeling. I'm doing everything I can to feel better. I worked in the studio yesterday and plan to as well today. I'm making the most of my 3 weeks off of chemo! James is being great. I have acupuncture tomorrow and see the doc on thurs for the once over and bloodwork. I also hope to work out tomorrow. I'll take it easy but I want to maintain my strength and stay fit to fight this bitch. My date for new cells is July 6th. I just go, get the infusion and go home.
Take care,
Beryl

argh

Hey,
I finished the last Chemo two days ago and I have to say it's much different this time around. It's feeling more like chemo chemo- no appetite, nausea, low energy etc. I'm a little depressed but working on it. I was with baby Thomas today- we BOTH took naps and I was wasted at the end of the day. He does lift my spirits tho. He is so freekin sweet! I ate some poached eggs, took vitamins and I'm heading for the shower, then bed. I'm hoping it gets easier. I think it has to. James did emdr with me last night for HOURS. It helps.  I was whooped yesterday but better today. I haven't been up to working out the past few days. Maybe tomorrow.
Keep sending me the good healing vibes.
I get more donor cells on July 6th.
Thank God they froze some!
Take care,
B

5 down 2 to go

Hi,
I just finished my 5th infusion- two more to go and this round is done. I'm  little tired- had a night of depression but I feel better. Def not 100%. I'm trying to stay hydrated, juice and stay positive. I'm hoping I snap back quickly after the 7th infusion. This is not my favorite thing.
Keep that positive energy coming!
xoB

First day done! New Jewelry!

 Hi,
I had my first day of chemo. It went very well. Things are very streamlined and much quicker. Instead of 30 minutes of anti nausea drugs.....a pill!!! Instead of 2 hours of dripping Vidaza- 30 minutes! I had a private room and James was with me. I barely had time to listen to my chemo affirmation tape and I wwas done. The nurses were great and I saw Dr. Douvas (hem/onc) too. He's great, as well. I feel good- I'm about to do some work and then hang out on the hammock and visualize. Here's hoping the next 6 days go as smoothly.
I've been juicing meditating and visualizing. James has been doing lots of EMDR with me which helps so so much. Seriously people, marry a therapist!!!
Thanks for all of the good wishes and love. I need it. I wore my Virgin Mary necklace  (thank you Mari) for power and strength.
I'll write tomorrow.
En la luche,
Beryl