Day 92!!!

Hello Blog Buddies. I'm at Day 92! I saw the big cheese Doc yesterday and he said I'm doing well. I need to take a whole bunch of tests in the next few weeks including another bone marrow biopsy to see exactly where I am. Then he'll start the process of tapering off the meds based on the test outcomes. He said there's a fight going on between my blood types now- that's why my counts are low. As soon as my donors blood wins my blood type will change to the donors and my counts will go up. He says about 30 days after I'm of of the immune suppression drugs I can go home. I'll still be immune suppressed but I'll be on the way to building an immune system. That may take 6 months to 2 years- it depends so I'll be sporting the mask for some time. I def. want to go home!
My friend Silvia left this morning. She's been taking care of me since monday night. We've been such good friends for so long. It's been wonderful to spend time with her. She's GREAT caregiver and I'm grateful. She works harder than I do!!
Tomorrow is the day I quit one of my big drugs so I'm excited about that too. I'm going to walk the beast and do some push ups and sit ups then tackle some grading. I've started doing push ups which I really like. I do the girly kind but it still feels like a workout. I feel pressure to really work had at my recovery. I want to do everything I can to get back to my life!
My friend Jody, an excellent accupunturist, is my caregiver today. I enjoy our time together- she feels like a sister to me.
Be Well,
Beryl

day 88

Hello Blog Buddies,
I started a new medication today and ended another. I think it's a good trade off. I'm having a long day at the clinic, getting work done, thank goodness! It's well past my nap time but what can I do? I can't sleep in the clinic. It's unattractive. My dear friend Silvia is flying in this afternoon from Miami to take care of me. We've been friends since grad school. Not only is she a wonderful friend- she's crazy fun. I'm including a picture of me and another old friend, Lisa. Also wonderful and so much fun. A generous, dear dear friend. How did I get so many good friends you ask????? I'm fabulously wealthy!

Day 84

Hi,
I've started back to school in an on-line, virtual sort of way. So far so good. As computer focused as I am it is a good fit. My friend Jen stayed with me the last two days and helped me with my excel spread sheet for my classes. She's so brainy! It was fun to spend time with her. On Tues my friend Marla stayed with me and made me some old school matzo ball soup. It was amazing. I do sound overly fond of chicken soups don't I? I can't help it. It's good and it stays down!!!
Tomorrow my friend JoJo comes. It's been a busy week but kinda slow- I'm chafing at the bit for day 100. They may or may not start weaning me off some drugs and I am so ready for that. I'm grateful for the meds and their wonderful work but I want to see what's under the hood after all this time. See what the old/new immune system is doing.
James and I forgot our anniversary!!! We were married Jan 14th 1978 so 33 years right?? How did that happen? I tell you what...I'm keeping him. He's fully loaded and fits like a glove! His mother told us 33 years ago that it was too close to the holidays and I hate to admit she was right. Don't tell her tho!
Take care,
Beryl

Day 80!!!!

Hellooooooo,
It's a quiet day at home. I'm paying bills and filing medical and insurance stuff. james is cleaning and making us juice. We went to cville yesterday and picked up all the records and bills so I can start working on our tax prep. We have a great accountant and he has us trained to organize our material well. This is my least fav thing. I also went to cville on fri and saw my bud Anne M. and my boss Cliff Haury and colleague Sarah J. It was wonderful. I also saw the faculty show and Stacey Evans' show. OMG Fenella hung both shows beautifully and the work was amazing. I loved seeing a whole body of Stacey's work together. It felt like a train ride. Each piece so precise and distinct- each image it's own world view. I really loved it. The faculty show- what a group. everyone is so talented. I loved the show. If you haven't seen it you need to. It's up until Feb 2nd. It's hard to pick a fav because it's all sooooogood. I'm so proud to be in that department!
I've been poring over my "Edible Landscape" catalogue. (simmer down young lady!!!!!) Next year- all in good time. They'll still be there next year. They are plant geniuses!
I go to clinic tomorrow. james looked up side effects of one of the drugs I'm taking and found some good stuff. I'm very puffy faced (not a good look) on mons and tues and it tapers off a little by sat and sun. That corresponds to a big drug I take mon and tues. Also nausea a plenty. I'm not sure when this drug ends but I hope it's soon. Nauseous and moon pie face is NOT my spring look!!!!
Stay well,
Beryl

Day 77

Wahoo! Moving along. I am in the clinic today. I have had one med reduced by 50%- a good start (if a low one).
More later I'm feeling good- heading home for a ........NAP!
oxoB

Only Half Bionic Now!!

Hi,
I had my Hickman port removed yesterday. I did not care for it. There's way too much body involved. Too messy for my taste but it's done. It wasn't too bad. I should be healed up by tomorrow- then I start training for the olympics in gymnastics.Glittery outfits-no??? I have a few days off from clinic so I worked on my on-line classes all day and I believe I'm ready. It's a lot of work! I bought some new reading glasses for all the papers that will start coming my way. (hmmmmmmm)
I received a prayer quilt from my good, long-time friend Marie, in Miami last night. It's full of wild colors (yayyy) and has a border of cherries on black. YES! ThMarie had everyone who knotted sign a paper so I could see who participated. She also left many untied threads so my cville buds could tie and pray/affirm too. Can you believe that? Marie was a student in the first college level course I ever taught- over 30 years ago!! We've been good friends a llooonngggg time. Anyway, I cried and cried (I'm teary now!) thinking about all my old friends, and families of friends and colleagues who knotted the quilt. That is the sort of thing that could never happen under normal circumstances. It's such a tangible sign of love and friendship. I'm very very grateful. So as I see my caregivers and family, I'll ask them to knot the quilt and the piece will be complete. I slept unr it last night and during my nap today. It felt like a blessing.
Your big baby friend,
Beryl

My friend John Grant says....

http://www.youtube.com/watch?v=Xed9LiMf1Qg

This is a penguin equivalent of me when I get released back into the wilds of Ivy!!


I think he's right!!
xoB

Day 71

Hello Citizens,
I went to the clinic yesterday and received some high octane blood and magnesium! The meds are working my hemoglobin down!!
This cannot stand!! Anyway I have 3 days off- I'm back on monday when I'll hopefully get my hickman line out. For real this time.
Bridget and I did a little shopping today which was fun. I bought a blazer for Lyle's and Katie's wedding. I'm going to look like a newspaper- black white and red all over! (sorry) I just finished my promotion package for school. I had lots of time to go crazy on it and I've been collecting documentation for 3 years so it feels like a good substantial package. I hope they determine eligibility by the weight of the notebook. I taped some lead to the inside pocket!!!
This next week I'll finish up everything I can do for my on-line classes, hopefully. I keep thinking about it and really want to be prepared.
I'm feeling pretty good, walking the beast drinking water, napping etc. Keeping my eye on the prize!!
Stay well,
Beryl

Day 68

Hello,
I hope you are all well. Bridget was with me today and she made a beef stew that I can NOT stop eating. She's perfect! I have another two days off from clinic. I had a bone marrow biopsy yesterday and didn't have time to get my hickman lines removed. We rescheduled for next monday. I am not going to miss having two red and purple pieces of plastic dangling from my chest (altho I DO like the colors) Imagin if they were harvest gold and avocado green?? Now THAT would be hard! I have a little urinary tract infection so I'm on yet another anti-biotic. I was thinking about it last night and I guess this whole "no immune system" is a real thing. In my heart of hearts it didn't sound possible but I do seem prone to infections and I'm usually not. So...fine maybe it's true.
I'm working on my new contract portfolio for school. I have way too many files to go through. I need to presort the next time!
Stay Warm,
Beryl
PS Did I mention we saw some of the Richmond Tacky Christmas Light tour? OMG there are some visionary artists in this town- absolutely stunning!!!