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!!

Met with the District Director for Congresswoman Hayes

Hey all,

I received a message late Monday afternoon from Be the Match (BTM), asking me if I could meet with someone from the Congresswoman's office in Waterbury.  Lee wasn't thrilled with the idea of me going there alone, because he was concerned with the neighborhood.  I was more concerned about getting lost, which is exactly what happened.  For once, I left my house with time to spare, but I was still about 10 minutes late.  I finally found the address of the office, then I needed to find a parking space that wasn't too far away.  I was lucky enough to find a space around the corner, that was fairly close.  I was already in a pissed off mood, because I got lost and then the friggin kiosks to pay for parking weren't working.  I tried 2 of them and I thought it was just me until I met a woman on the street who was having the same problem.  I was late for my meeting and she was late for a dentist appointment so we both said screw it. 

When I finally arrived at my destination, I had to climb about a million stairs and lets be real, I'm not in the greatest shape.  I could't catch my breath when I reached the top.  I walked in the meeting room and met the Ambassador from Be the Match and the District Director.  The man from BTM  asked me to share my story, but I needed a minute or two to breathe and take my anti-rejection med.  I started telling my story, but it is a long story and I wasn't sure we were making our point.  The reason for the meeting was to ask the Congresswoman to sign on a letter in Congress to increase funding and the deadline was that day.  I gave the District Director, who I thought was awesome, a copy of my book and a copy of the poem I wrote for my donor (thanks Ginny for the idea to write another poem).  I don't know what the outcome of our meeting was, but I hope we raised awareness, if nothing else.  Especially the need for minority donors!

The person from BTM walked me to my car after the meeting to see if I got a ticket and guess what...I did.  He looked at the ticket, handed it to me said, "It's only $20, just pay it."  Okay, are you f'en kidding me?  I drove a half hour from my house, which ended up being an hour after getting lost, and finding out at the last minute about the meeting and preparing myself the night before and climbing Mount Everest (the stairs) and he never offered to take care of the ticket?  I was super pissed off at this point!!  That's a lot of nerve and I don't blame BTM, they probably aren't even aware that it happened.  I will think twice about working with him again.  I probably will if it benefits the greater good.  I can put it aside...I hope.  The last 3 sentences are how my mind works constantly.  LOL!!!

BTW, my back is feeling a little better.  I'm able to stand up without making an old man grunting sound.  Yah me!

Peace out Peeps! 😘

My back is still cocky!

Yippee, I am posting three weeks in a row!!  The cocky thing is that my back is still very uncomfortable.  I think it may be sciatica.  Sometimes when I step on my right leg, I can feel a zing down my leg and into my jaw.  Holy craparooie!  It has definitely limited my walking, leaning over to pick things up and standing up from a sitting position.  Stairs are the worst!!  I keep reminding myself that this too will pass.  It really is minor compared to many other things I've endured the past two years.

So, has anyone else had issues getting their meds?  I understand that some medications need to be very closely monitored, but when it takes a week just to get a prescription, something still isn't working.  I occasionally take a med that is for anxiety, nauseous, and a mild muscle relaxer.  It's an awesome drug, especially when I get queasy and don't need the heavy duty anti-nauseous medication.  Well it is now in that "needs to be watched" drug category.  The pharmacy couldn't fill it because it was a no refill and one of the Yale doctors said he needed to see me...yeah, no!  I called my Boston doctor and then checked with the pharmacy two days later and nothing had been called in.  I called Boston again and I was told that it needed to be sent in the mail, because it had to be a hard copy.  More days go by and I finally got the script.  Yesterday, I went to the pharmacy and they said because it was out of state they had to call Boston and have it verified.  Are you frustrated yet, because I was.  They called, which took a while and then I had to wait for my medication to be filled.  Yawn!!  It's a good thing I really like everyone at my drug store, because it helped with the aggravation.  I'm still confused why it couldn't have been called in, because it had to be verified by phone anyway.  To top it all off,  I've only taken 25 pills in a year.  Then, because I'm a crazy person, I went to the Post Office.  It was very busy.  Needless to say, it took me almost two hours to go to both places and I live 5 minutes away.  Phew!

I got the key chain for Hans, my donor!! I hope they will send it to him in May.  I also hope that he speaks English, so he'll know what it says. Maybe I should have done it in German.  Oh man!!  I often wonder who he is and why he did this for a stranger.  I wonder what he looks like and if he has a family and what do they think about all this?  I mean, there is some strange (stranger than they know)  American woman running (moseying) around the US with their familial blood coursing through her veins.  Does he ever think about me and wonder how I'm doing?  Have they made up a name for me  too?  What foods does he like or hate?  Does he even want to be in touch in a year?  So many questions and so much gratitude.  I already feel an unimaginable closeness to him.  Wouldn't it be funny if his name really is Hans?

Until next week,
Peace out Peeps!