Today's Check Up

Hi,
I went to Richmond today and had lab work done, received my first Hepatitis B vaccination and spoke with Dr. McCarty. He says everything looks good and that I'm moving out of the danger zone for relapse. he said 80% of the people who are going to relapse do so in the first year. I'm at 14 months. The other 20% who are going to relapse do so in the first three years so my odds are getting better everyday. I DO NOT want to do this again! I'm still a little anemic and my blood is a little off but it's heading in the right direction. More bloody steaks please! I'm exercising, juicing, tapping, visualizing, meditating, taking my vitamins and herbs and resting. So my goal for the new year is to keep kicking butt! My next visit is Jan 30th for another bone marrow biopsy and the second hepatitis vaccination. Also I think I'm starting to look more like a cat than I use to.
Grateful, Grateful and more grateful!(for my good health- not more biopsies or for looking like another species!)
Beryl

December 5th....what the what!!!!!

Hello,
A month has gone by! I missed my appt with the docs because I had a cold and they don't care for people with colds around newly transplanted patients with no immune system!!! Unlike ME who has a shiny new immune system!!!! I phoned the docs and the nurse said my tests were all good..everything was the same ..100 percent engrafted..no lung issues etc. So that was great but just as great was the fact that I caught a cold and it didn't turn into pneumonia and chest infection and put me if the hospital or worse. It was just a cold. So my immune system is working. the docs said getting sick was good...it built up my immunities!!! So it's looking good. I'm still taking naps when I can. if I have to miss it I feel a little logy and then perk up. I'm back at the gym Now that my cold is better. Every event feels like an occasion. I keep thinking of where I was a year ago and it blows my mind. I'm still very careful and am the queen of hand sanitizer. you should see me at the gym wiping down the weights with antibacterial wipes. I make myself laugh! I find that the more I do the more I can do. I feel so lucky. I'm spending more time at school and next semester I teach in the classroom again. I see the students at school but I really miss the constant contact. So I'm heading into the holiday season with gratitude and a full heart. James is still very careful with me and as sweet as ever (mostly). My friends and family are close by and a pleasure and a comfort. Now where's my freakin Christmas tree!!!!
Take care and I'll keep posting!
B

It's Friday Friday Friday

Hi,
All the tests went well. I was a little barfy from the pain meds-not too too bad. I'll know the results of the CT scan and Biopsy in a month. Today I went to the gym for the first time! I did a body pump class. I was the one in the back of the room, covered in germ killer lotion and using baby weights! Slow and steady. I saw my friend, Marietta M. first thing and that felt like a good omen. I see the nutritionist next week so hopefully I'll get a ton more giant vitamins to take!!!
Have a lovely weekend,
Beryl

Happy Birthday to me!

Hello,
I am now a year and a day old. How freekin lucky am I??? This monday, Halloween (!!!) I go to Richmond for the dreaded Bone Marrow Biopsy, Cat scan and bone density scan. I've also been seeing Marty Albert and Peggy Wright (integrative medicine and nutritionist) for getting me back to my peak version. I have some severe vitamin deficiencies that we are working on. I meet with them both again in a few weeks. I think his follow up care is really essential to putting back all the pieces. I'm at 80% now but I really think 100% is possible. The Richmond docs don't address any of the rebuilding issues- their gift is the transplant part. It's hard to believe so much has happened so quickly. I'm staying warm and enjoying the fall. i hope you are too.

100%!!!!
beryl

End of the post transplant drugs!!!!!

hello,
Today I took my final anti viral medication [acyclovir]! As of tonight I am only taking pre transplant meds and a boatload of vitamins and herbs. I was afraid I would be on transplant meds for years or forever. It is such a relief! Next saturday is my one year anniversary of the transplant. A year ago I was on day two of the killer chemotherapy drugs to kill my old bone marrow. It seems so unreal and unlikely. We went to Short Pump tonight for dinner and talked about all the people who helped me and stayed with me and took care of me. It's amazing what good, dear friends and family I have. So generous and so kind.
feeling grateful,
beryl

The next step!

Hi,
I went to see my integrative doctor last week and he sent me for a boatload of bloodwork and tests. (Dr. Marty Albert) He's very thorough and is trying to rebuild me with vitamins and herbs. He and his wife, nutritionist Peggy Wright, are very innovative and willing to research and use their professional connections to make me a new plan. I'm down to one medicine (finished on oct 14) and now have a tons of new vitamins and herbs to take. I actually feel more energized.I still need the nap but I feel kind of peppy sometimes. It's been a while since "peppy" was an option. So I'm going with it. I see the Richmond docs on Halloween for a bone marrow biopsy, CT scan and bone density scan. Holiday appropriate, I think. I'm still seeing my awesome acupuncturist every other week and she's working on energy and blood too. Jody Forman, love her! So rebuilding my health is very much in the foreground. I'm still walking the beast everyday too, of course. Love the beast!
Stay well,
Beryl

Dr Yes!

Hi,
I saw Dr Chung last week and he said yes to everything! I also had a flu shot (first one ever) and that was fine. The lung Dr. said my lungs look great. There's still that tiny anomaly that was there before the transplant but it hasn't grown or changed. She said I'll have 1 more CAT scan in November and if all is well- she'll be out of my life. I'm not sure why she keeps scanning me for cats. It's truly odd. So I'm doing good. The doc says I'll be off my final medication in mid October. I've been blessed and that's for sure.
I'm working my way up to rejoining the gym. I'm a little scared. I've got a long way to go before I'm as fit as I was, but I'm thinking it's time to pick up the pace.

Meow,
Beryl

Day 311

Hi,
I went to the the docs last week for the lab results and also took a series of lung tests. The lab biopsy results were all great. I'm still 100% donor and 100% male. I am still a little anemic but it's slowly heading in the right direction. I'll meet with the chest doc on sept. 14th to review my latest lung tests. My biliruben is holding tight at 2.6. The docs say I can't do anything but wait. I asked Dr Toor (the strictest of the docs) my long list of "can I" questions. He's the king of no. On the 14th I see Dr Chung who is the King of Yes. I need McCarty. He's the big cheese. I'm not sure when I'll see him. The better I get the more boring I am as a patient (good!). I have my next bone marrow biopsy on Halloween and then it should be 6 months before the next one. Things change but I'm hoping this won't. I have been having a biopsy every one- two months for the past 2 years. My lower back looks like the big dipper!
I'm teaching on-line and doing the gallery and my office hours. I'm still being diligent about napping, nutrition, juicing and exercise. I'm working very, slowly, but I'm working. My hair still looks like Bill Clintons. James and I were practicing our presidential impersonations. He's doing Reagan (booooooooo) and I'm doing Clinton.

Stay well,
Beryl

July 26

Hi,
Yesterday I went to the clinic and had another Bone marrow biopsy. This is never fun. This is the big test that tells if my donor is still in charge of my immune system. I'll have all the results back in a month. I'm still anemic but that takes a while to change.
I'm optimistic, of course, but it will be good to have the test results back. I spoke with the Physicians Asst. about my limitations and it's still unclear. I need to speak to the big cheese. In the meantime I'm being careful and enjoying being more social. I'll update when i know something new.
Health!!!
B

Magical 256!!!!!

Hello,
So.....my tests came back and indicate that my immune system is up and running!!!!!!!!! I still have some immunizations in place (rubella, mumps, measles, & tetanus) from before the transplant. The doc says they may need to be repeated in the next four years...or not. Not a problem either way. I received my polio vaccine today and some wheel thing on my arm to test for something to do with my immune system. The doc says I can eat in restaurants and don't need to wear a mask!!!!!! Needless to say, I'm dipping my toes in the water and slowly acclimating to this brave new world, not jumping in. He says I'm way ahead of the curve on my recovery and expects things to continue to go well. The big markers are 1st year, third year and fifth year. After that, they consider me to be in full remission. I'm stunned. I'm amazed. I'm so so so happy! In two week I get another Bone Marrow biopsy to make sure everything is kosher and working properly. What a day!!!
Bam!
Beryl

Day 249!!!

Hi,
Nothing to report. I'm feeling good- keeping up with exercising, juicing, EMDR etc. Washing my hands like a crazy person, wearing my mask and thinking sanitary thoughts! We had a great weekend and are going to try to get to bed early. Happy 4th of July!
Take care,
Beryl

It's day 241

That's all I got.

Monday

Hi,
I had a long day at the docs. They took a bunch of labs to determine when I can start my immunizations. I'll know something in about 3 weeks. They are happy with my progress- still watching my lungs and anemia, but generally optimistic. I'm still feeling good, exercising, teaching and kicking butt. I'm still napping in the afternoon. I get tired and need put myself down for a nap!
Take care,
Beryl

Day 234

POW!

In two days....

Hi,
In two days, it will be two months since I stopped my immunosuppressant drugs. Fingers crossed!
B

I'm not pregnant!

Hi,
I went to the Ob/Gyn yesterday and I'm NOT pregnant! My flora and fauna is not what it should be so we're doing a little tweeking. I'm on a few new meds which will hopefully do the trick. They are wanting to rule out the Graft vs Host option. (Just say no!)
That's all I got. My hair is about an inch long and very weird in texture. My friend Laura says it's like a baby chick but I think it's like a crazy wire haired terrier. Or maybe a sheep. It wants to go into a fauxhawk but I won't let it!!! It's got a mind of it's own.
The kittens continue to be charming and adorable. They are learning to climb trees. They really are genius kittens.
Take care,
Beryl

Day 220

Hello,
I went to the clinic today (I go every TWO weeks now) and things look fine. I had an immunization shot for flu and so far no reactions. In a month or two, depending on my blood work, I'll start getting my baby shots. Slow and steady.
I heard some bad news about one of my transplant friends who was hospitalized with Graft VS Host about 5 weeks ago. He passed away. I'm still stunned. He was doing fine but apparently had other complications. So I'm feeling very sad for his wife and a little scared. He was about my age.
It's two years ago this month that I was first diagnosed with MDS. It's been a weird couple of years. I'm looking forward to the time when this is all way in the past.
In the meantime the kittens are growing and James is going to try to catch them and take them to the CASPCA. They are so cute and they have all said they want to stay with me!!!!
Take care,
Beryl

HELLO!

HI,
I'm off for a nap but before I do I want to share a pic my dear friend Silvia sent me. Sil is a big time photographer who has very pretty grey hair. I was telling her I was thinking of keeping my hair grey and she weighed in with her opinion. She's votong for the gray and wild look!
xoB

Hello!

Hi,
I just wanted to share a photo Bridget took of the kittens. They now live in the side yard.
xoB

Day 209

Hello All,
I went to the docs today- everything looks good and I don't have to go back for TWO WEEKS!!! I'm very excited. I had my lung treatment today (anti-pneumonia drugs) and a check up with labs. I have nothing to report!!!
The baby kittens haven't been around today. I think the mama moved them. I'm a little bummed. I bought a ton of organic chicken broth to flavor their food. Maybe I'll try eating it. (joke!)
I stopped by school tonight and poked around a little, wearing my mask, of course. I look very suspicious!!!
Let's all stay well!
Beryl

So many cute kittens!!!!

Hello,
Our feral Cat (who we call "Precious Kitty Girl") apparently had kittens a month ago. This evening she brought them out to show them off. There are 5 amazing and adorable kittens living in our vegetable garden. James said we could catch them all and let them sleep with us in our bed but, as you know, he's crazy!! I'm enjoying them from a distance and expressing my love through milk and food They are adorable! Katie shared the kitten love with me. She said they'll be ready for new homes in 2 more weeks so if you are looking for a precious kitty girl or boy of your own....let me know.
Meow!
Beryl

Day 202....snap!

Hi,
I just got my results from the bone marrow biopsy. Everything looks great- 100% donor and no chromosomal abnormalities. There's a little this and that with my blood still, but they say it's nothing to worry about. I'm feeling good- grateful and good!
xoB
PS I still look like George Clooney.

Monday May 9th Day 195!!!!!!

Hello! Happy Mothers Day!
I had a great day at HOME with my sons and their sig. others yesterday. We all ate and chatted and spent some quality time on the porch. I still haven't finished unpacking but I'm slowly getting through the boxes. My Richmond doc said the preliminary results of the bone marrow biopsy are good. He'll know all in a few weeks. He says I'm ahead of the curve but still need to be uber cautious etc. He DID say I could do laundry (not disgusting laundry- just normal) and light dish washing. I'm thrilled!!!! What a cheap date!!
James has been doing all of the heavy lifting in the house (apt) for 6 months and that's a lot o laundry and dishes etc etc. I will be cautious- wear my mask and gloves, and not go crazy. I swear!!!
I'm loving being home and feel so so so grateful. The semester is almost over and I'll be posting grades tomorrow (hopefully). I'm looking forward to a little quiet time.
oxoxB

Day 186

Hello!!!!
OMG I am home. My house is clean thanks to a hard working Tracy and all my stuff is here thanks to a long list of awesome friends (Barbara, Marion, Anna, Jennifer, Laura, Bridget, Lyle, katie, Sarah, Doug, Josh, Tom, Wayne, Diane, Betsy, Andy, Jim, Hope, Kate, Ted, Dottie Bird, Rob, Evan, Deborah, John Randall, and anyone else I've forgotten). What a bunch of generous and hard-working friends. I've been thinking about all my caregivers too. People are so kind and generous. I feel like I'm at a big milestone. I know it's not over, by any means, but it feels like a huge accomplishment to have been through the transplant and made it back home, still resembling myself. Of course James is my number one advocate and partner. Nothing would have been possible without him. I got so lucky! Who knew, so many years ago, that he was more than just a pretty face??

So I'm home, I slept like a baby and everything is beautiful. I'm slowly unpacking today while James, Katie and Lyle clean up the apartment. It was a wonderful place to stay and everyone was lovely to us. (although I did scare my neighbor's children with the mask....and maybe I shouldn't have tried to stuff them in my trunk, either. Well....live and learn.

My garden is beautiful, thanks to Bridget. It is in full flower and so green, it breaks your heart.

I go to the clinic tomorrow and it's time for another bone marrow biopsy. This is a big painful test but I'm going to float in, get tanked up on drugs, and float out. My ct scans last week looked good and my pulmonary tests went well too. I was at a 20% loss of lung function at the last test. I don't know how much I improved but the technician said there was definite improvement. (Thank you, mighty beast)

It's the end of the semester and I'll be grading like a wild thing. This has been a lot of work but I'm grateful for it. I needed to stay plugged into the world and my work and colleagues at PVCC have made that possible.

I'm going to go unpack some more boxes!!! I'm home!!!! I can't believe it. So happy, so grateful!!!!
xoBeryl
PS This is a pic of me and my God daughter, Dottie Tarbell (Dottie Bird). She came to help me move back in. The doc said I could hold her with some conditions (which we met) and she was delicious. OMG sweet sweet sweet! (I look GOOD with a baby...I'm just saying...)

Day 179

Hi All,
We're packing up for the big move back to cville. I'm crazy excited! It was a tough day at the clinic. I found out one of my transplant buds is in the hospital with a fungal infection in his brain (he's very young, 25ish), another is in the hospital for 2-3 months with heavy Graft VS Host (my age) and another one passed away last weds. He was young, around 40. These were all people who were about as far along as I am. That's the scary stuff. I met with another transplant friend who is 2 years out from her transplant and she's fine. It's good to know that it's possible.I'm still feeling well- exercising, doing EMDR, visualizing, meditating and praying like crazy. I had a cat scan today and on weds I have a meeting with a pulmonary specialist and a series of pulmonary function tests. This is all standard and isn't an indication of a problem. Next monday I have another bone marrow test and it's the last day of the semester. I'll have LOTS of papers to grade, that's for sure.
Keep me in your prayers and I'll do the same,
xoBeryl

Day 175

Hi All,
I just took my last immunosuppressant drug this morning. Now we will watch as my new and improved immune system merges seamlessly with my body and creates a new super human. I keep thinking of the movie with Jeff Goldblum "The Fly". I won't turn into the creepy fly tho- too unattractive and gooey. Maybe I'll visualize something else. The terminator when he's all melted and reassembles to form an even more menacing version of himself? Wait, wait, I'm still working on it. I gotta get all this scary stuff out of my head or I'll end up a sticky, melty mess. Anyway- send me your best vibes.
oxoxBeryl (new an improved!!!)
PS I'm including a photo of my new hair do.I think I look a little like George Clooney now!!

Day 172

Hi All,
I had a good visit at the clinic today. They were running behind so I didn't get my lab results back. I end the immunosuppressant
drugs this thurs. Then my donor's immune system will take over. The hope is that when my donor's immune system wakes up in my body, it doesn't attack my organs, thinking they are foreign. The docs say the next 60 days are the most dangerous so keep those prayers and good healing vibes coming. I'm doing everything I can do to stay fit...now it's up to the body.
We're still planning on moving home on April 30th. I'm pining for cville.
Optimistically,
Beryl

Day 165

Hi,
I went to the clinic today. My biliruben is up a little (2.8) and my blood pressure is a little low. James is not feeding me enough breakfast!!! He likes this leaner version and is trying to keep me skinny! Next week I take some more tests (CT Scan and Pulmonary tests) but that's all standard stuff. They aren't worried about anything. I'm going to go visualize and take a nap!! Maybe I'll visualize myself TAKING a nap....
Your friend,
Beryl

Day 161

Hi All,
No health news. I'm still tapering off the drugs. This saturday I decrease the tacrilimus (sp) by 50%. In two more weeks I stop it all together. I went to the house today and brought a few things home. My little stray kitty came by to see me. It's a perfect pet for me. She is feral and won't let me touch her and I'M feral and won't let her touch me. We show our love through food!! How Jewish!!!
I'm including a photo of my garden shot today by Stacey Evans (who is NOT feral) with her Iphone. Spring!!!
xoB

Day 158

Hi,
I went to the clinic and my biliruben continues to decrease- it's at 2.4 now. On the down side, another one of my transplant comrades is struggling with Graft vs Host. He was just 3 days off the immunosuppressant drugs and he had serious GI issues. He's going back in the hospital this afternoon. I'm still on the immunosuppressants for another 20 days or so. That's the stuff that scares me. I'm going to do some EMDR asap and stay in the moment.
On the other up side, spring is lovely and I feel very good!
Take care,
Beryl

Day 154!!!

Hi Buds,
It's day 154. Can you believe that? I'm doing fine. No drama. My friend John is still with me. I love hearing him and James talking and laughing together in the morning. (I stay in bed until I hear the bananas being cut up). John is a good cook and an amazing cleaner. I've been house bound for a few days (furiously grading) but I think I may venture out today. I need to start the wheels in motion for going home too- reconnecting the internet, trash pick up etc. I keep picturing myself on the dreamy porch. I need to go home this week and see my flowers. I bet my tulips are blazing!
That's all I've got. No news is GREAT news.
Take care,
Beryl

Day 151

Hello Blog Pals,
So things went great at the clinic. My bilirubin is down to 2.4 (from 3.0 on thurs). I have learned how to spell bilirubin, which is good. My scans showed that everything was normal with my kidneys, liver etc. There was a small amount of liver disease from the chemo but it hasn't gotten worse and the doc says you could live your whole life and never even know you had the tiny amount of disease. So I'm ok with that. He also said we are still on track for going home on April 30th. There is still a danger of graft vs. host disease but that's an on-going concern. It could happen at any time or not at all so we are still cleared for take off. I feel very good and optimistic. I am going to take a little nap now and then grade some papers!!!! My dear friend John Mennes is coming into town tonight to take care of me. He's an old friend from Miami and grew up with James. He's also Marie's lovely husband. He might also be the sweetest man in the world. (except for james, of course)
Yayyyy Beryl

Liver Scan!

Hello,
My friend Kate brought me in for my tests today. The worst part was not eating or drinking for 8 hrs before the test. The breathing therapy went well and the scan was on time and painless. They scanned all my guts. I had no idea where some of my organs were. The tech was very nice and told me what everything was and what we were looking for. She was great. Apparently your liver can't get pregnant so call off the baby shower. I go back to the clinic on monday and the doc will tell me what the deal is. My billiruben went up a little more to 3. On a happier note my hair is growing a little more and I look like ........well, lets just say I'm still wearing a hat. I had a good talk tonight with my friend Lisa, who is in the middle of her own health struggles and she sounded great. I'm so grateful for the people in my life. They're jewels.
I'm loving the Spring. Even the weeds are a gorgeous green!
Take care,
Beryl

Day 145

Hi,
I'm just getting ready to grade papers. It's day 145- nothing special going on today- just school work. My billiruben (sp??) level went up a tiny bit again and the doc says I look yellowish. He took me off the liver helping drug and gave me NEW meds for a bladder infection. They are starting to get worried about my liver and want me to get a sonogram this thurs. I think my liver might be pregnant! My bone marrow is young enough to reproduce so we'll see what happens. James and I worked on a new EMDR tapping affirmation involving my liver and bladder. I don't even like to SAY those words! In the meantime I'm drinking water like a fish.
Marie went back to Florida. She was great- she can fold clothes too! (like Mari) I was kind of saving the last basket of clothes she folded. I didn't want to put the clothes away too soon- i wanted to savor it. My folding is really bad. I think I wait too long. I also wanted to say that Silvia makes the BEST scrambled eggs with cheese. Delish!!!
Stay well,
Beryl

PS

We are also celebrating Bridget's birthday too!!
AND today I met my on-line mentor, Gloria H. She had her transplant 2.5 years ago and is doing really well. Her blog helped me establish my goals for this event. She is very focused and optimistic. She, along with Ashley S., have been huge allies!
xob

Day 140

Good Morning,
My dear friend, Marie, is with me this week. We've been friends for three decades!!! She's a great cook and competitive! I gained 3 lbs from Mari's visit and Marie is committed to making me gain 5! I'm going to roll home to cville!! My sons and daughers-in law (present and future) are coming over to celebrate James' birthday. It will be home cooking, for sure. I won't be doing any cooking but Marie will! She's the new and improved model.
I'm back on an old drug to help my liver. I'm not thrilled about this but I'm being a good patient. (good but disgruntled!) I'm keeping up with the naps and exercise and juicing. I'm loving the trees in bloom and seeing the bulbs come up. This is my favorite time of year!
Be well,
Beryl

Rainy Day 133

Hi,
It's been raining all day. Mari left for Spain this afternoon. She was so fun. We laughed so much and everything is super clean and organized. (sigh, as my friend Laura would say) It was a great 10 days and I'll miss her. You should she how she folds clothes. I swear, you don't need to iron- it's a domestic miracle. I don't know how she does it. Apparently I didn't get any folding skills from my donor. I went to school yesterday and visited a little with my people. It felt good to be there. I'm longing to go back- that's for sure. I have the best boss and co-workers.
I came home from the airport today and took a long nap. There's a little playground outside of my apt. window and it's often filled with little kids, yelling and happy to be outside. On a day like today it was just the sound of rain...very dreamy. I'm going to walk on the beast now- walk off some of Mari's delicious food. I have her recipe for chicken and rice now so as soon as I can cook again I'll have no excuse not to be a genius chef!
Take care,
Beryl

Day 130

Hello Blog Buds,
Today is day 130! I went to the docs today with Mari. All went well. I didn't need any magnesium or blood. In fact for the first time my hemoglobin went up without a transfusion. This is very good news for me. Things are starting to work together. I still am very nap-focused but this is a step in the right direction. School is going well. I'm grateful to be able to teach for many reasons. I need the money, of course, but I also want to stay involved and have work to do. I like teaching on-line. I miss the contact but students are very germy so this is working out better for me. Mari is here for two more days. We are still eating like kings. James has def. gained weight- I lost two lbs which I don't understand. It must be those calorie burning power naps that are effecting me. I don't think I have EVER not worried about weight gain. It's weird. It's part of the wackness!
Yesterday I stayed in my PJ's all day and just read and napped. It was a rainy day so I thought I would see what that was like. It was great. I didn't even make an effort to "look" productive! Actually I was very busy making hemoglobin!!
Stay well,
Beryl

Day 127

Hi All,
It's been quiet and all's well. Two people have contacted me about the name of the town in question and it was "Mouth of Wilson" and apparently the nearest Cracker Barrel to Mouth of Wilson is in Wytheville.
Mari, my dear friend from Spain, has been cooking up a storm and I've been eating like a monkey! When I'm recovered I need to make more of an effort in my cooking. Apparently a PB&J is not an entree!
Take care,
Beryl

Day 123

Hi All,
So I went to the docs today. I now only have to go to the clinic ONCE A WEEK! I rule!!! Doc McCarty (the big cheese) says I am doing super well and that I have NO chromosomal abnormalities at all. According to my blood and bone marrow I am MDS free!
My friend Mari is here and we were laughing about the Mouth of Martha story. She reminded me of the ending of the story. She asked me if I had any maps in the car and I said absolutely- I have maps- no problem. So we were very lost and she looks for the maps in my glove compartment and all I had were Cracker Barrel Maps. We had no idea where we were BUT we did know where the restaurants were. I actually still have the maps in my car, I think. You never know.
Be Well,
Beryl

Day 120

Hello,
It's day 120! That doesn't seem very long somehow. But it is! Yesterday my friend Shelby took me for a breathing treatment- the goal of it is to prevent infections (viral and/or fungal). Today should be less eventful- just house tasks and banking. My friend Jody is coming to help me. This sunday my friend Mari is coming from Spain. Can you believe that? That's a long way to come to help a friend. She's Silvia's sister and we have been friends for 29 years. We had babies at the same time and her mothering skills helped me with my boys many, many times. It will be good to spend time with her. One time, about 10 years ago, I drove her and one of her sons from cville to North Carolina to stay at Silvia's NC home. Lyle needed to go to Tennessee to visit a sustainable farm so it was sort of on the way. We had to take many small back roads and ended up a little lost. We asked these older southern gentleman directions and their accent was so dense none of us could understand a word they were saying. One man was saying we had to go to "Mouth of Martha" (I think) and we couldn't figure out what he meant. We kept repeating it (or variations of it) and he kept repeating it back. We finally left with a vague idea of how to proceed and couldn't stop laughing over the language problem. When I think of Mari I remember "Mouth of Martha" where ever the heck that is, and how much fun she is to be with.
I'm working very slowly on my taxes- I need to get a move on- tempus is totally fugiting! (forgive the spelling). I'm still on the med "taper" as they call it. So far so good- no side effects no drama. My hair is growing in a little. Very Sinaid O'Connor, sort of.
Have a lovely weekend
Beryl

Day 116

Hi,
I saw the big cheese doc today (John McCarty) and he said all my tests came back with great results and that I'm his best patient!! (maybe i encouraged him a little bit around that) James asked him when we could go home and he said not until the end of April. He explained (again) that I need to slowly get off the immunosuppressant drugs and then wait about a month to make sure everything stays stable. He reminded me (again) we didn't want to get careless now. I was very happy with all my test result but i thought it might mean going home a little earlier. Apparently not. (heavy sigh) I love the spring and my yard is just filled with flowering trees and the boatload of bulbs I planted in the fall. I'll have to go and visit them during March. The main thing is I'm heading in the right direction. McCarty wants me to see a pulmonary specialist just to make sure things are going well so that wlll be coming up. Maybe the porch will be finished by the time we go home. That would be pretty wonderful. I didn't need any meds in the lab today and on thurs I'm only going to take a breathing treatment- not have labwork done. This is such a slow recovery but it's still recovery and I'm very grateful to be on that side of it.
Stay well,
Beryl

Day 114

Hi Blog Buds,
I had a great day today. James and I drove to cville (I drove there!!!) and went to our house. We met our contractor, who is currently re-doing the molding in the kitchen and replacing windows. He's also going to screen in the porch (!!!!!!!!) and redo the molding in the front hallway and open up the door to the dining room another 36". This will make the opening symmetrical with the room which has been bugging James for 10 years. I'm so excited. All the interior stuff will be done before we get home. He'll work on the porch in late spring. Although it was an expensive afternoon... it was great. We went to Ian and Bridget's afterwards and cruised real estate. Me so happy! James drove home and then I had a really great nap. I can't wait to go home. It's so colorful and cheerful there. I saw tons of dafs and tulips poking up...just a few inches but still present. It felt so good to sit in the fam room and look out the windows (the beautiful windows we replaced last year). Not too long now. On monday I have my breathing treatment and reg labwork. My cousin left yesterday. We miss him. James got to work on time everyday last week. He was good company and very helpful. See why he's my favorite cousin!?
Take care,
Beryl

Day 112

Hey,
I had the CT Chest scan today- no problems. I went to get labs afterwards and they sent me home! Talk about a dream come true. I'm trying to get new license plates that say either "Bite Me" or "B Positv". I may need to think this through.
xoB

Day 109

Happy Valentines day!
I went to the clinic today with James and my cousin Barry. The good news is my donors blood type won and I am now a B positive! Isn't that the best blood type? I love it and I'll remember it! The final results are not in yet from the biopsy but it's still looking good. My pulmonary test came back normal. The results aren't as good as they were before the transplant but I was super fit then.
I have my CT chest scan on thursday. The docs said this summer in July and august are statistically when the graft vs host rears it's head so I'll need to be observant. I also start a new drug to prevent thrush. I've been putting it off but I'll start it tonight. I had my port lines removed today- they'll "access" me when I go to the clinic. The port is underneath my skin. Kinda creepy but it's nice not to have plastic crap dangling from my chest all the time. So it feels like progress. I talked to the doc about going back to face to face teaching in the fall and he was not excited. He said we won't know until august- when we see what happens with the graft vs host if anything. I'd love to be able to plan. I know I need to be grateful to be doing so well but I do like to plan. Another stupid lesson!!!
Hope you have a lovely valentines day!
Beryl

Day 107

Hi,
All's well. I had my last dose of an antifungal IV med Micofungin last night. James would hook me up to it every night. I also decreased my dose of Tacrolimus today from 6 pills to 4. I feel ok. I had to have a transfusion on thurs. and the docs think the decrease in these drugs will help my blood count. I feel tired but ok. My cousin Barry from Denver is coming in tomorrow to help me. He's always been my fav cousin. He use to take me to the movies when I was little. It should be a good week. We have clinic on monday and a chest CT scan on thurs. I went to the eye docs fri and got a clean bill of health. The Richmond docs were concerned about Graft vs Host but there are no signs of it. So far so good. I don't have the results of the pulmonary function test yet.That's a boatload of doctory stuff- huh??
James is making us juice now and then we'll do some laundry and tidy up some.
Have a good weekend,
Beryl

Day 104

Hello Blog Buds,
It's been a quiet day- no news, no complaints! I sent a letter to the editor this week about health care and they published it!
Check it out:
http://www2.dailyprogress.com/news/2011/feb/09/firsthandedly-grateful-health-care-legislation-ar-831761/

Tomorrow I go to the clinic and have tests, then fri I see an eye doc. Other than that I'm keeping up with my school work and resting. James is making us juice now so I'm outta here.
Be well,
Beryl

Day 102

Hello Buds,
Thanks for the comments on the posts. They make me teary and grateful to have such good friends. I just video chatted with my friends Rob and Anna and their gorgeous baby girl, Dottie. That is one enchanted child. I couldn't stop looking at her- all babies are amazing but this little girl has a surprising serenity. I think she gets it from me!!! Anyway I can't wait to meet her and hold her.

The clinic went well today. I had all my blood work- a crazy amount- and my bone marrow biopsy. The Dr. (MaryJo Martin) is gifted. She is so patient and gentle and funny. She makes it tolerable. The results will show my engraftment and other stuff. The results will come in in stages- the biggest result takes about 3 weeks. The goal is for the engraftment to hold steady. After the tests James brought me home and I slept like a monkey. An actual monkey. Can you believe it? Tomorrow my cousin Meg comes to care for me. She's a hoot and always fun to be around.
Stay well!
Beryl
James just made me yummy stir fries. He's good looking and he sure can cook!

Day 100!

Hello Blog Buddies,
Today is day 100. I start reducing my meds slowly and allowing my own immune system to develop. This is a dangerous time and there are a lot of things my body needs to do if I am to recover from the transplant. I need to change over to my donors blood type, I need to fight the dreaded graft vs host disease which may rear it's scary head when the drugs are reduced, and I need to develop an immune system. The Graft vs Host disease may occur anywhere in the body and do a little or a lot of damage.It's a toss of the dice. That's one of the reasons for all of the tests. The quicker they find it, the quicker they can deal with it. My plan is to keep eating right, exercise regularly and juice more regularly. I'll also be meditating, visioning and praying like mad. We did some EMDR on it today which is very helpful. It's good to know I have your support and prayers too- I need them more than ever.
In the struggle!
Beryl

Day 97

Hi,
It's a rainy day and I want to snuggle up and nap and it's still the morning. I've been working on school stuff including the schedule for Fall. It's hard for my punkin head to sort all that out. It's either that or taxes so I'm sticking with school work! I don't see the docs until fri when I have several pulmonary tests to check my lung function. Let the testing begin!!! My friends Rob and Anna had their baby girl this week. This is very big and happy news for us all. Baby Dottie- in the house!

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!!!