The future is clear

Hi,
So we met with the big doc (he is awesome) and he said my blasts went from 24 to 6 and that he believes the trajectory will continue downward. The plan is to go home tomorrow (AHHHHHHHH!!!!) and rest and recover and go back on Aug 19th-Aug 22 for 1 last out patient treatment. My counts need to recover before I can do a second dose. I will be seeing my cville doc for labs 3x a week.  For the next cycle- it will be 1 fewer treatment and smaller doses. Then in 4-5 weeks I should be ready for my transplant. I will be in complete remission which is ideal. Of course I asked if I could skip the transplant and he said no- the remission will only last a few months and then I'll have leukemia again. Just thought I'd ask. This is the best case scenario. I'll be at UVA for about a month and then home recovering for 3-6 months. (same as in Richmond in 2010).  I think the hardest part is over. It's a marathon.
So James and I are mostly packed up. Our niece, Maggie and her husband Matt and kids Kara and Lana came over for dinner. James was great with the kids and I got a chance to catch up with Maggie. She and Matt and their girls are wonderful and it was a pleasure to see them.
Needless to say, I can NOT wait to get home.
Ok- lights out!
xoB

I'm out out!!

watch and Dance
https://www.youtube.com/watch?v=mW1dbiD_zDk
Boom,
xoB

I received a bill from the hospital.....

Hi,
I received an on-line bill and I was afraid to open it. It was 49.00. PVCC has GREAT insurance!
Heavy sigh of relief!
B

Last Night in the Hospital!

Hi,
This is the last night- the last night of
being awakened in the middle of the night of
taking baths with handiwipes (hospital style)
not having a bathroom
lugging around a chemo pole
eating the same food
dealing with people in and out all day
always being cold
needing help to get dressed
being worried about the .05% of  germs that sanitizers don't kill, that love hospitals
crappy internet
wearing slippers
weird pillows and sheets
having tons of drugs in my body
never being in dark and quiet
not breathing fresh air or hearing birds
and I could go on...but you get the picture.
I have another Bone Marrow biopsy tomorrow and will leave the hospital at some point...could be day or night
Weds I'll come in as an outpatient and have labs and see the Doc at 2:00. He'll decide if I'm staying for another week as an out patient and start a new course or go home or go home and come back. All will be revealed!

My doctor said I was doing really well and that they had essentially let off an atomic bomb in my body and that takes some time to recover from. It was only because I was so fit, that they even considered letting me do the trial. I've been being a little nice to myself, hearing that. I've felt like a slacker. So glad this is the last night.
xoxo Beryl

One more thing

Look how much my Locust Bean has grown!! My friend, Tim M. took this pic.
LOVE!!!

Here's a pic

of what it can look like:

That's prolly photoshopped. Still....

xoB

Nearly there!

Hi,
So I have 2 more days until I am released from the hospital. I am doing well and the docs are moving towards my release. I have a biopsy on Tues and meet with my Dr. on Weds. On weds it will be 28 days from my first cycle. The doc may say I'm in remission OR he may ask me to stay another week as an outpatient and do a second cycle, then go home. The cycle takes 5 days, if it's the same as the first. At first I freaked out and then realized this is a marathon. Either way, I'll be out of isolation and the hospital sometime on Tuesday. James and I have agreed that there will be pie when I'm out. I will take photos. And now, heres a baby, 6 months old next week!!! Do NOT mess with her. Or her cat. Or parents. Or grandparents.
xoB

Still here

Hi,
My friend, Ana, took this pic several days ago. This is the side of James's office. We had a friend build the boxes and I planted them with seeds this spring. Such an improvement! I'm still here. My lip hasn't completely healed and I'm not sure why. The first results of my bone marrow biopsy have started coming in. They saw a lot of nothing which is what they hoped for. I have another one on the 30th which is also theoretically my discharge day. Who knows when that will happen- they are on a 24/7 cycle here. I can not wait to have a shower. AND to put on my clothes by myself. It's a big production- they thread all the bags of stuff I infuse through my sleeves and then rethread the clean clothes through the infusion bags. It's not the worse thing but it's part of the hell of being in here. I shuffle around surrounded by loops of cords, very carefully so I don't trip. Imagine just walking?? I'm going to stop my kvetch, although I promise, I could go on. I've been getting pictures of baby Rowan throughout the day until her bedtime. That is one cute baby. I am not kidding. Thomas' new rainbow room is finished and looks amazing. I can't wait to get home. It's hella hot here- or so I hear. I can't wait to be outside again. I'm still on anti viral, anti fungal, and blood pressure meds. Their blood pressure cuff is brutal. No lie. It feels like they are going to break my arm. Also- my hair is definitely falling out. Which, considering the weather may be ok.
Keep sending me the energy and love.
Take care,
Beryl

Day 16

Hi,
My mouth/face infection is almost gone. I'm still needing platelets regularly. I'm still ready to go home, but I get why it's important to be here. The days go by pretty fast, but there are so many of them. The docs are very happy with my progress.
And now for what's happening in my garden thanks to Betsy C. She sent me a few photos which is almost as good as grandkid pics. Rowan is sitting up by herself now. She is a strong and adorable little girl. Thomas is Thomas. I miss them and my kids so much.

Look- the trellis roses are blooming!!!!

Look at these Susans and Zinnias!!

Your welcome!

Final Day of the CONE

Hi,
Today is day 14, so theoretically things should improve. They are still trying to fight the infection I have in my face and mouth. I went to the dentist today- she said my teeth were excellent (I am a dental hygiene maniac) I had a CT done of my face, I'll hear results tomorrow. The docs are going wild on the antibiotics.
Other than that I can eat again, I didn't exercise today but I will tomorrow. I did a few stretches but that was it. I'm getting a unit of blood today and my hair is starting to grow back. I'm just going to say, therapy, visualization and relaxation techniques are freekin KEY. (therapist husband, granddkids and children/wives are key too) And now- here is a pic of me, and my two colleagues from Barry University, both wonderful artists, Angi Curreri and Silvia Lizama. We use to call ourselves the "three fabulous babes". My brother, Joe, took the picture. I didn't even have to airbrush us!

Take care, Beryl

Update!

Hey,
So I am moving along. I am in the chemo cone- where side effects live. So far I have a non-itchy rash and a little something going on in my mouth. No one is worried. My heart rate, blood oxygen and temp are all normal. I haven't had the "food tastes weird" thing yet, but I'm counting on it to take off that freshman 15. I made my rolly bed table into a standing desk, which is my best idea today. The days are passing. The thinking is I'll be discharged on the 30th, see my doc 0n the 31st and be on a plane August first. You all know how goal oriented I am. In the meantime, Thomas is reading and Rowan is sitting up!!! Here's a pic of James in the glass booth. We put the phones on speaker and just do what we are doing. Then, here's a view from my room. This is the view from everyone's room.
Oy!
xoxoxoBeryl

Last Chemo tomorrow

Hi,
I am getting my hair buzzed tomorrow morning and probably starting isolation afterwards. I will leave the room, take a shower, and the cleaners will clean the room, wipe down/sanitize  everything I own and then I'll be in isolation.
I am feeling ok.My numbers are dipping and I'm tired. I have an exercise bike in the room so I'll try to exercise. Tomorrow I'll take a photo of the view from my room. I see nothing but tall medical buildings.
I'm off to sleep.
Take care,
B

I am in it! 

Hi,

I finally got in Weds Night and started treatment Thurs. Today I was moved into the isolation section and when my numbers drop, I'll be confined to y room until they come back. I have more chemo tomorrow, then rest then the final round on Monday. James is with me until I am in isolation and then we'll have to visit through a glass window or skype. This is really weird. I hope it works. If it does, I'll be ready for the transplant. Oddly enough, the transplant is less strict than this. Maybe that's why their success rate is so high. I'm being as good a patient as I can. Although, they have made several mistakes on my regular meds so James and I are being very watchful. James is his usual bulldog self. He's the perfect storm. He's who you want to have your back. I brought pics of my family and my sweet house. I made them poster sized so I can really see them. They really help.

Stay tuned and keep me in your prayers.

Healing,

Beryl

Still in a holding pattern

Hi,
I wasn't admitted today. The room wasn't ready at 4pm, not ready at 7pm and still needed cleaning which takes several hours. The plan was for me to wait and get the Picc line put in sometime tonight or early morning (like 2:00 am.) That wasn't going to work for me so they called my doc and told him I wanted to sleep in the hotel and try again tomorrow. Apparently things in admission are loose. Hmmm. We went to Target and bought kitchen stuff for James and t-shirts for me. I am still not sure where the picc line will be but I do know it needs to be accessible. In the meantime, here is a drawing from Thomas called Rainbow Hurricane.
Night,
B
PS I did get a lot of grading done today!

A really sweet picture

One sweet pic before I go to sleep.
xoB

The plan begins tomorrow

Hi,

We spoke with the Doc after a day of tests.

I start the two drugs in a sequence for the first 5 days. Then that's it for taking the drugs. Then the drugs start doing their work and I am moved to an isolation unit because essentially I will have no immune system. They will keep me there for 20plus days until my counts come back up. If all goes well I will come home and possibly go into transplant if I am in remission. If I don't go into remission, I will come back to Texas for a month or so and get a second dose OR if the transplant isn't ready to go, I'll come back to Texas and have a smaller dose to keep me in remission. After the first 5 days (or so) I won't be able to have any visitors (even James). They say the biggest risk is infection and since they initiated this stricter protocol their infection rate has dropped 30% so I'm happy to comply.  It's interesting that they are stricter here than VCU was with visitors when I had my transplant there. 

The appts went very smoothly- they know what they are doing. 

So, that's the plan. I didn't expect them to be so strict about visitors but I definitely don't want infection. James and I can speak through a glass (like prison!) and I'm guessing we'll skype a lot. The Doc said I will lose weight and maybe/probably my hair. They said I should be fine for teaching on-line etc. I'm glad I'll have work to do. That and on-line shopping for my skinny new self. 

I'll keep you posted. 

Thanks for your energy and love.

Take care,

Beryl