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