Hold your freekin horses

Hi,
The transplant is on hold. The docs are worried about my blasts and have a new plan. New chemos for a few months and then, if my blasts are down, transplant.
oy,
Beryl

Hey Buds

Hi,
I've had a busy few days. Yesterday I had an EKG, Chest Xray, chemo and met with HR. I gotta say, PVCC takes care of it's people.  Today it was the dentist and a bone marrow biopsy. They had to do it twice- my aspirate (???) was being uncooperative. James is talking with my transplant doc, Dr. Ballen about the counts. Hopefully last weeks new cycle of chemo, which I tolerated well, brought my blasts down. The immediate goal is to keep me from going to Leukemia, which is a whole other thing. We'll know some numbers in a few days. In the meantime I'm proceeding as if we are on track. I had a photo of Thomas blown up for my hospital room and I have another poster of Me and James and "the kids" from the last transplant. I bought some cute PJ's and my friend Rebekah gave me some cutish floral crocs as slippers. You know how I feel about crocs but they are floral and comfy so I'm going to try to be open minded. (my current slippers are paint spattered)

I haven't worn them yet- they are reserved for the event.  My happy drugs are wearing off so I'm going to do some errands. I bought new covers and blankets for the guest room. It's looking amazing.
I'm going to include the photo of Thomas I blew up. Did I mention I have a new grand baby on the way?? They're going to come into this world the day before my transplant, I'ma need a poster of the child. My guess, looking at Katie and Lyle, it's going to be beautiful and smart. I'll include pics if I can.
Take care
Beryl 3.0 (thanks Laura, for the new name- I'm going to put it on my business cards)

oy

Hi,
So I had a biopsy on Monday and the results show my blasts are rising pretty quickly. This isn't good. They are starting me on another round of a new chemo and hopefully that will turn this around. The transplant is still set for Jan 30th. I'll go in on the 30th, get the big chemo for a week and then the transplant on Feb 5th-ish.
I'm in it.
B

Tests and More Tests

Hi,
I spent the day at UVA getting tests in prep for the big event. I had a Pulmonary Function Test (good results) a bone marrow biopsy (we'll see in a few days but I'm guessing I have cancer), an echo cardiograph  (looks fine) and they took a ton of blood to test for a ton of things. The entry date for the hospital is Jan 27-30th somewhere in there, and the transplant will take place 7 days later. They estimate a month in the hospital and if all looks good, back home to rest and heal for 6 months or so. It all depends on my immune system growing, bone marrow growing, ability to make blood etc.
So I'm busy getting ready, getting things in order at home and at school.
The transplant doc says the chemo regime will be a little lighter because of my age but they expect it will do it's job. So far I am liking the transplant team. I feel strongly that this is my best option but it's still scary as hell.
My daughter-in-law, Katie Mason-Yates' mother, Jama Mason has offered to organize my after hospital care. The plan so far looks like February in the hospital, James will spend the first week out with me and he'll drop me off at the clinic when I need infusions/meds. I'll need someone to drive me home and stay with me until he gets home. I'll also need help on off clinic days. I'll post Jama's contact once we have a system in place in case anyone has the time or interest in helping me through this. I'm resisting hiring a stranger- that would be very tough.  Anyway.... I need some blood- I'm a pint short so I'll be getting a pint tomorrow morning.
Did I mention I bought 3 pairs of cute PJ's?
I'll keep you all up to date so that when we talk, we can focus on gardening, art, and of course my grandson, Thomas. I have another grandchild on the way too. We may share birthdays! It's first, my third!
Take care,
Beryl

Happy Holidays

Hi,
So things are moving forward. They have several donors and are doing the next step in testing to find the perfect match. The plan is to go into the hospital late January and possibly early February. It all depends on the donors and their schedule. James and I meet with the hospital next Fri to get "oriented". They say the process is a little easier these days. We'll know more soon. I'm feeling ok- really ready to be done with this disease and back into a healthy life. Modern medicine. Science. Progress. Family. Love. Friends. All working together. 
I'm enjoying the holidays- James and I are resting and enjoying time together and with the fam. Thomas is wonderful and Lyle and Katie's new baby is set to come into this world in February. Big month. I will be teaching on-line next semester. I found it helpful last time and hopefully it will be helpful this time. Tomorrow I'm gong to do a little tile piece in the bathroom in James' office. I've been wanting to do that for a while and this is the weekend. I'm getting ready to hibernate and heal. I'm painting my guest room a beautiful light magenta next week for my out of town friends and fam. It's the least I can do- right? I tiled a part of my basement stair well last month and plan to finish it next Fall. I'll post as dates become solidified and things move forward. (about the transplant- not the tiling!)
Keep me in your thoughts as a strong and healthy person.
Thanks,

Beryl

Update

Hi,
I just finished my latest chemo round and visited Dr. Ballan at UVA's Bone Marrow Transplant Unit. The plan is to look for donors in earnest with a goal of having a second transplant in Mid-January. I had hoped to somehow avoid this, but it's happening. No new science is going to pop in and save the day. So I'm moving forward- preparing and working with James and my family and friends to get ready. I'll have the transplant at UVA and God willing be back home after a month in the hospital. The recovery will take a while, I'm hoping for the best, of course. There's not much data on second transplants so it's uncharted territory. I'm counting on you all to help me and James get through this.
I'll update as I know more.
B

Hello

Hi,
Another long lapse- sorry. Things are ok. Still on chemo and not loving it but moving through it. I'm looking at another transplant in January if all goes well. James and I had a great visit to Fla this summer and saw the fam and friends- which was great. Everyone seems happy. We had a great time. School starts next week Lots of busyness. This is going to be short- I'll write again- and not wait so long! My yard is EPIC! I'm going to try to do some tile work on the basement stairwell before it gets cold. I'll send pics. Flowers- big crazy flowers!
xoB

Lonngggg lapse

Hi,
A lot has happened. I have had a variety of health struggles, some related to the MDS, some not. I had a gall bladder episode, a hospital stay, contracted cdif, and am currently struggling with it for the second time. I am 80% back to my original cells complete with the original MDS.  I don't want to spend too much time talking about this but it's been a challenge. I am fighting my way back to health and taking care as I do. James is by my side, fighting along with me. I am going to make a cup of tea, get dressed and go to work. We are winding down the semester and I am looking forward to a little rest.
More soon. In the meantime my front yard is lovely and my kids are great and my grandson is wonderful. We have names: I'm Mayhem, he's Chaos and James is Pandemonium. Bath time is Cray to the Z!!!

Hellooooo

Hi,
I had a bone marrow biopsy last Monday and have received a few results. The blasts (irregular blood cells that screw everything up and can grow until you have Leukemia) are in the 1-5 range which is considered normal. Last time they were in the 5-10 range so this is good news. I'm still struggling with my old cells coming back (boy vs girl) but the boys are increasing a little. I'm still waiting on the chromosomal tests. I had 2 "bad actors" as of last biopsy so we'll see what we see. The new targeted therapy drug is suppose to kill them. I hope so cause this drug is a challenge. I am much more fatigued than I was when it was just the regular chemo (Vidaza). I have continued my Vegan ways and it's been VERY helpful.
I'm still waiting for the drug companies or scientists to come up with some great therapy that will edit my crappy chromosomes. I would love to avoid a second transplant. I start my next round of chemo tomorrow and in a week from that I'll go to VCU for an infusion of my old donors blood. The hope is the donor blood will remind my body to go back to my donor cells and the vidaza (chemo) will kill off my girl cells.  At that point I would be in remission and eligible for a transplant. It's a lot of "ifs" and "whens". In the meantime I am still teaching and have great students this semester. Of course I spend time with my fam and young Thomas. He's endlessly interesting and adorable.
My daughter in law, Katie gave me a buzz cut this week. The new drug does not support hair! I've lost a few pounds and replaced them with a few wigs. I'm having fun with some new looks. Thomas is always amazed when he sees me in the wigs. It's magic!!! James is always researching anything that can help and is taking good care of me. I'm enjoying it!
More when I get the rest of the results. They have to grow stuff so it takes a while.
Here's to an early spring!
B

Happy New Year

Hi,

 Here's an update:

I'm now 70% beryl blood and 30% donor. My old blood has the bad MDS chromosome. I've been on the new targeted therapy drug about 5 weeks. The side effects are manageable (so much less hair to wash!!). The chemo is working a little. My doc says I am making a ton of new red blood cells which is important, but overall, my counts remain low and I've needed infusions every few weeks or so. I've also needed platelets for the first time. The new meds were giving me lots of pain from inflammation but I read about a vegan diet being helpful and I started 

eating vegan and the pain was gone in 48 hrs and never returned. So I'm a vegan now.

I have a biopsy scheduled for 1/22 and 2 weeks after that we'll know more about the chromosomes etc. My doc is optimistic- he says there are several indicators that suggest a positive change. In the past the chemo worked well but they say the MDS mutates and can create problems. I may get a transfusion of more of my old donors cells if my numbers aren't showing improvement.

The goal is to get me into remission and get another transplant with a new donor. They have 10 potential donors. My personal hope (dream, really) is that I move into remission and the immunotherapies

they are studying come to market or they edit my DNA or something. Either way- this is a long slog. 

Here's to a healthy, recovery-filled new year! (Here's a pic of me and Thomas at Lewis Ginter Garden!)

Beryl

argh

Hi,
Things are going in the wrong direction. I'll be starting a new med asap and the new goal is to get me into remission for another transplant. Not what I had hoped for.
B

Biopsy Done

Hi,
I had the biopsy and a unit of blood. My doc (Dr. Douvas) did a great biopsy. This is not a walk in the park but he made it tolerable. Best. Biopsy. EVAH!
Can you tell I've had blood?
I get another unit tomorrow and then I wait for the biopsy results. No one has a clear idea of how to proceed until we get this info- so we wait. Hopefully not more than 2 weeks.
Sigh.
Happy Halloween. Thomas was Hei Hei, the chicken from Moana. Pretty freekin cute.
Take care,
Beryl

Boy vs girl

Hi,
I just finished my last chemo of this cycle. Good. I got my results back from the doc and my girl cells are up from 50% to 75% and my boy cells (donor) are down to 25%. My Doc (Dr. Douvas) has scheduled me for a bone marrow biopsy this coming Monday so we have a clearer idea of what's going on. The Chemo should be bringing the boys back but the reverse is happening.
argh,
B

bloody mcblood blood

hi,
things went fine with chemo last week- my hemoglobin tanked the following week. I'm 2 bags low this time. I'm at uva now getting transfused. My doc thinks its chemo side affects and that I should be patient. So I am.
on the drip,
b

New Round started today

Hi,
I started my third round of chemo today- proceeded by another pint of delicious blood. The doc says I am producing new young red blood cells so I'm moving in the right direction. My platelets are good and I just need to remain calm and proceed. So that's the plan.
Oy
Our renovation is almost 100% done- we are sleeping upstairs and using one of the new bathrooms. It is beautiful. No lie.
The doc took extra blood to test my boy vs girl white blood cells.  It takes a week to get the results. 3 months ago it was almost 50/50. The goal is to get me back to all boy (donor), thus my regret over that awesome skirt. Once I'm all boy again, Ima need more girly clothes!
B

Needed more blood ...... so I got it

Hi,
I was feeling out of breathe last weekend so I went to the docs and established I was about a pint low. I spent the day getting refueled. I'm at about 75%. This relapse has def slowed me down.
Not loving this but I am carrying on. I just grouted the last tile work I did on the bathroom renovation and it is pretty sweet. I'm still bummed about not buying that skirt.
Taking care,
B

Moving along nicely

Hi,
I had a blood transfusion last week and man was that great! I felt like an angry young man, but not angry or a man. Maybe just young. I started my next round today and the doc says my hemoglobin is still "goodish", my platelets have increased to normalish and my marrow is producing lots of new young red blood cells which indicated the chemo is doing it's job. He doesn't expect I'll need anymore transfusions which is great news. I feel good. I'm going to work in the garden. So there!
Take care,
Beryl

PS. I'm adding a photo from several years ago when I went thrift store shopping with my girls, Silvia and Angi. Believe it or not, I did NOT buy this tutu. WTF was I thinking??? I'd wear it to Chemo if I had it!

Hi- sorry for the lapse

Hi,
I'm sorry for the lapse. Life...am I right?
So the first cycle went well. So far no side affects. I am doing 5 days instead of 7, which is much easier. My hemoglobin was low and I had to have a transfusion. I haven't had one since my transplant. The low hemoglobin makes going up stairs and hills a challenge. Other than that I'm living my regular life. I'm at UVA right now waiting to see if I need more blood. My doc is being very attentive to this which I appreciate.
I'm trying to stop caffeine after 2:00 so I can tell when I am tired and actually rest. There's an innovative idea, right? In the meantime our home renovation is in full swing and we have been living with all of that excitement. There does seem to be an end in sight. (please baby Jesus!).
Thank you for your positive thoughts and energy. Sometimes I feel daunted but I've been able to do EMDR and come back.
School has started and I'm back in the saddle. I'm VERY lucky to be where I am.
Take care,
Beryl
PS My Grandson just turned 3!!!!

okay- here we go....

Hi,
I spoke with the doc at about 6:30- he says all of my blood counts are down (they have been declining all along) and that my platelets are now below normal for the first time. He wants me to start Vidaza (chemo) sooner than later. He says it takes a while for it to kick in and he doesn't want me need a transfusion or be more prone to infection etc. So I start on Monday July 31st. Five days on and three weeks off. I'm not thrilled but I don't want to go into serious decline. I know this drug and it's a good one so I'm proceeding. Please think of me as the kick ass healthy monkey that I am.
In health,
Beryl

PS

Hi,
I'll see my UVA Doc next Thursday and we'll discuss the start date and other stuff. So in the meantime...
B