1 yr bone marrow-aversary

Yesterday was one year since my second bone marrow transplant.  I didn't post until today, because it was a bitter sweet day.  I have to admit that I'm still bitter about getting sick again.  I remember, after my first transplant, I was so happy and I had a party.  This time, I'm a little angry and sad. I feel terrible, because I wish I could be the old me, but that isn't reality.  I feel like a burden all the time and it sucks!  I can't say thank you enough and I can't constantly feel like I owe people.  It's hard. It irritates me when I'm speaking to someone about my back hurting or whatever, and they say, "Well, at least you're here." Yeah, no shit Sherlock!! I really don't need to ever be told that.  Don't get me wrong, I'm extremely grateful for everything.  I thank God every day for this third chance, but I always fear another relapse.  I might look good and healthy and that's because... as Billy Crystal used to say, "It's better to look good than to feel good."  Does anyone else remember that from Saturday Night Live, when it was a good show? 😆

Enough of all the wah, wah, wah from me.  I'd like to acknowledge this milestone, by reminding everyone to get on the bone marrow registry.  There is an immediate need to diversify the registry!  Marrow matches are not determined by blood type, but by ethnicity and a bunch of scientific stuff (HLA matches).  Minorities, people of mixed race and mixed ethnic backgrounds are desperately needed.  The closer a match, the better the outcome for the recipient.  I know the term bone marrow aspiration can be very scary to most people, but many transplants are done through peripheral stem cells.  Bone marrow donation is done from the hip bone, and stem cell donation is almost like donating blood except you are hooked up to a machine that takes out the blood cells that are needed and puts back in your body what isn't needed.  Most of the time it's done through stem cells.  Mine were both stem cells.  As far as being nervous about the hip bone stuff, it is my understanding that you are knocked out and a sore afterwards. I don't know exactly what that feels like, but I have had 4 bone marrow biopsies in the past year and a half and I'm due for #5 next month.  It feels like a bruise at the sight for a couple days. I don't mind the biopsies and I love when I get good news.

If anyone has questions about donation or the processes, please visit www.bethematch.org
Also, please share this information with family and friends.

GET ON THE REGISTRY AND POTENTIALLY SAVE A LIFE

This is the shirt Lee gave me for my bone marrow-aversary!

Peace out Peeps!

Happy Good Friday!

Hey everyone!

Easter is on Sunday and I feel the need to say something.  I know I've never been the person who overly holds her tongue, but this post is about something very important to me.  It's one of those things that actually upsets me to my core.

Okay, here it is. Nothing is more disrespectful than using the Lord's name in vain!!  It drives me insane.  The name Jesus Christ should only be used in prayer, praise and celebration.  I never hear people using the name of any other Deity as a swear word.  I would never use a "name" of faith in a derogatory manner.  I don't understand why people find it acceptable to use my Lord's name in such a hateful manner.  It's not just in real life, it is also common place on TV.  It is so sad! 

There was a time in my life, when people had an issue with my religion and yes, it was discrimination.  I was actually told not to wear my cross around them. It wasn't even acceptable if I wore it inside my shirt, if it was still visible.

I wore a cross everyday for many years, so this broke my heart. It was so bad that I developed irritable bowel syndrome and hives.  Eventually, as most of these people came to know me,  our relationships became very good.  I spoke to one of people about using the Lord's name as a bad word and he said that he never really thought about it.  This gentleman stopped saying it and realized how offensive it is to some people.  It was a wonderful moment and to this day I still love him like a second father.  We taught each other a lesson. 

Sometimes, I think people do and say things without realizing how it affects other people, myself included.  One of my goals in life is learn and improve everyday.  I hope this post will make some people think.

Happy Easter or whatever you celebrate! 

Peace out Peeps! 🐣

Crazy dog

Hey all,

It's Saturday!  I'll start with the dog.  Last Saturday, my husband brought home a rescue dog.  Her name is Melania (my son named her). We have named most of our animals after family members, so she'll be called Mel for short.  Mel is my sisters' name.  We have had a Meredith, Johnny, Marky and Jimmy, they are my niece and nephews names. I know we're a little kooky and it has gotten confusing when the person and pet are together 😁!!  Melania has been diagnosed with whip worms, which means her poop has to be picked up immediately so it doesn't contaminate the soil.  Okay, I just stopped having to deal with all my own crap issues and now I have to deal with her shit!? Man. it never ends!  She also has serious separation anxiety, which is causing me to have serious anxiety. It's been very hard and if the medication and behavioral modification doesn't work, we will have to rethink this situation.  She is basically a good girl, as long as we are with her.  This is a tough situation and has caused many tears.  I'm praying all this stuff we are trying works for her, because she doesn't need someone else giving her up.  My health will come first if push comes to shove, but I'm hoping it doesn't come to that.

Last night I received a surprising phone call from one of our State Representatives. Danbury Day is taking place at our State Capitol and I am one of the honorees!  Holy craprooie!  They are honoring two Democrats and two Republicans and it takes place in May. State Rep. Gucker said that I'm being honored because of my 10 years of service on the City Council, my advocacy for blood cancers and bone marrow donation and my years of organizing the "Walk of Honor".  I am humbled and shocked. The delegation will also be doing a tribute to Marian Anderson, who was the first African American singer to perform as a member of the Metropolitan Opera. Miss Anderson's studio is still standing in Danbury, CT. It is going to be a very cool day.

Tomorrow is blood work day for me.  Please say a little prayer that all is still fine.
That's all for now.

Peace out Peeps!

Lee, Jimmy and Melania.

Poem for my Donor

DONOR POEM
by: Mary Teicholz

Not a day goes by that I don’t think about you.

I wonder who you are and do you think of me too?

I don’t know why you would give me such a gift,

But I do know your stem cells gave my blood quite a lift.

I feel a closeness to you even though you aren’t near,

You gave me your marrow and alleviated my fear.

It’s been a year, and I don’t know your name,

The funny thing is, our blood is the same.

All the words I can come up with to share my gratitude,

Are way too inadequate to suit my feelings and mood.

Everything seems contrite, because  you are a hero in my eyes,

You saved me from saying some very hard goodbyes.

Instead, I get to annoy my family and friends every day,

Giving me my life back is something I can never repay.

I can say thank you from the bottom of my heart,

I always knew your cells were strong, right from the start.

From the moment I was told that I was being put in the registry,

I knew that my match was going to be a male from Germany.

We are an ocean apart and I still felt that connection,

You are an amazing human being, and a perfect selection.

Your selflessness has given my life back to me,

You are a part of me now, a part I may never see.

A part that I admire and pray for every night,

I thank God for you always, my bright shining light.

Interesting discovery

I'll get to the discovery, but first I'll fill you in on my disgusting day yesterday.
I don't know what is going on, but I woke up yesterday morning with a stomach ache, again.  It progressed to pain, throwing up and diarrhea and I mean having to do laundry poopy stuff.  I think this may have to do with acid reflux, because my throat was all burny after I barfed.  This morning, I increased my stomach med, so hopefully that will do the trick. I'm still not feeling great, but I am a little better. I am such an awesome wife, that I left my stomach remnants in a small garbage pail on the back porch for Lee to take care of.  I know, I'm very thoughtful.  Hahaha!

I recently found out something very interesting, that had never occurred to me. When stem cells need to be transported from another state or even country, a courier picks up the cells and stays with them until they get to the hospital where the recipient is.  I never thought of that before.  I figured that because it's like blood, that the cells were put in a cooler, put on a plane and picked up at the airport by hospital staff.  These couriers actually fly around the world to get cells for those of us who need them.  It is all anonymous,  there is no way to show appreciation.  My courier flew to Germany and back and protected my cells until I received them.  Thank you to all the couriers out there for being a part of caring for a stranger.  It's amazing how many people that I may never know, have been such an intrical part of my life.  Another puzzle piece in my recovery.  It's all very cool.😎😎

Here's a reminder to share my rap video, so we can all raise awareness about bone marrow donation.  Let's keep those couriers really busy!!  Bethematch.org for more info.

https://youtu.be/DyReeZfFJOI

Peace out Peeps!!