Virtual Doctor Appointment

I'm so happy to be sharing some good news today!!!  My transplant doctor took me off of my anti-rejection medication!!!  He also took me off of my blood pressure medication, but I have to take my BP every day.  That's two less pills. I can't believe it.  I don't have to constantly be revolving my morning around my 10 AM med.  No more alarm on my phone going off to remind me to take it!!!  No more always making sure that I have an extra pill in my purse, just in case we aren't home at that time.  Okay, right now I'm always home, but you get my drift.  Some other good news the doctor gave me is that there have been NO cases of CoViD-19 on the transplant floor.  Believe it or not, I was concerned about the people on Lundar 10 (transplant floor).  I almost cried when he told me that.  Another step forward is that I only have to go for my labs every other month, not every month!  My veins jumped for joy!  Dr Mac is hoping to see me in August because I need more immunizations and I shouldn't get too far off  schedule.  It's been a good day. 😄😄

Peace, Faith and Hand Washing! 🙏

Easter Ravioli because they were yummy!!

Another day in paradise! HA!

My two year bone marrow appointment in Boston is now going to be virtual.  I had to go to Quest yesterday to have my blood drawn and there was a crazy lady there.  I was in one of the rooms toward the back and the phlebotomist and myself heard this woman losing her shit.  It sounded like she rushed into the facility and was borderline yelling, "Helllooo, hellooo"!  The woman was right there, so her drivel wasn't necessary.  Then the nut job was going on about her father and how her and her brother have been taking turns caring for him since March first...blah, blah, blah.  This woman was telling her entire life story and neither myself or the nice woman taking my blood wanted to hear anymore of her inane nonsense.  I'm not talking about her being nervous about the pandemic, I'm saying she was out of control!!  When I finished getting my blood taken, I washed my hands and went to walk down the hallway to leave, but the woman was standing at the counter and there was no way to do the 6 feet  distancing.  I paused, hoping the she would move, but of course, she did not.  I was afraid that I would be at Quest for hours.  I was wearing a N95 mask, so I turned my head away from her, hoping not to catch the crazy, and sprinted out the door.

Lee was waiting for me in the car and I was telling him about the kooky woman and he reminded me that it was the same woman who was sitting in the middle of the road one day, after she was let go from her job.  Oh yeah!!!  I had met her once or twice, but I was honestly more concerned with getting the hell out of Quest.  It was my first time being inside a building since last month when I had my blood taken. 

The visit to Quest was a pretty stress inducing visit for me.  I was reminded of all the fears I had after my 100 days after my transplants.  I was isolated for so long that I was fearful to be out in public, even though the doctor said it was okay.  Be prepared people, this shit is going to happen to you and it isn't fun, but it does get better.  Anyway, I put on my mask before entering Quest, and the smell of it caused a PTSD reaction.  I don't know how I kept it together, but I did.  I was shaking a little bit in fear while I was waiting in the lab room for all the information to be put into the computer. It's a lot when the doctor is out of state. Actually, the wild woman, took my mind off of wearing the mask and the smell that brings me right back to 2 years ago.  The nuttiness helped me get through the appointment, well, that and the awesome person who took my blood.  After we got home, all I could do was still smell the mask, even though it had been off of my face for quite a while.  Finally, I put Vicks VapoRub under my nose and around my nostrils.  It helped for a little while. 

Right now, I'm baking bread for Easter.  So that smells awesome!!  Our son, Bill, isn't living home right now because his girlfriend may have had contact with a CoVid person.  He's with her in order to protect myself and Lee. (mostly me)  I made them eggplant parm for their Easter dinner.  Bill will pick it up tomorrow when he gets out of work.  I'm making Lee homemade raviolis and lemon something dessert.  I don't remember the name of it and I'm too lazy to move my laptop to go see the recipe in the kitchen.  It will be different holiday, but we are all healthy and that's all that really matters.  I'll let you all know how my virtual doctor appointment goes.

Happy Easter and Passover!!

Peace, Health, and I've got your 6 (a little double-entendre) 😘

In the loop 3/29/20

I'm still feeling well and I haven't gotten bored yet.  Lee is home and bored to tears.  Our son is still working, because he is security, but he's staying away from people.  Things aren't much different for me, other than cooking a lot more.  I do have a couple friends who have come down with Cocky-vid 19.  They seem to be doing well.  I am amazed by all the people checking on each other and reconnecting by this thing.  Everyone has slowed down and it's making us all remember how important the people in our lives are to us.  Things that were so important a few weeks ago seem so minor now.  Health, family, friends and toilet paper are in the forefront of our minds. 

I wrote this poem and finished it yesterday. 

Coronavirus Poem

By: Mary Teicholz

This CoVid-19 has changed my life so much,

I have to always be cautious and careful what I touch.

I’m yelling at my family to cover their mouths 

And keep their spit to themselves.

I keep trying to buy essential groceries,

But there’s nothing on the shelves.

I’m not sure that my hiney is as sparkling clean

As it should be,

I can only use a few squares

For fear of running out of TP.

I’m not one of the people who are over-eating

And gaining weight,

And I’m not worried that very soon

My period will be late.

I don’t have concern about this CoVid

Causing a divorce,

I’ll just keep up my writing for my

Zoom comedy course.

I don’t mind being isolated,

I never get bored,

I’ve been cleaning out boxes and

Getting rid of the hoard.

I posted on Facebook that I found an envelope

Filled with cash,

My family started calling me saying

It was their stash!

I’ve been amazed by the dedication of all the

Doctors and nurses,

It’s even made some wealthy actors and athletes

Open their purses.

I’m getting so tired of this entire

Coronavirus sitch,

If you come within six feet of me,

I will cut a bitch.

I used to be able to go out to lunch

With my friends,

Now I’m in my stupid living room

Doing knee bends.

Most of the time I don’t know the 

Day or the date,

I keep catching the hubs snuggling the

Dog in her crate.

I’m getting annoyed always cooking and

Figuring out what to eat,

I’ll keep cleaning and disinfecting

This beast I’ll defeat.

I am fighting this nasty virus from

Coming into my home,

I’ll beat it with my words and

Writing an awesome poem.

I’ve washed my hands so much that

My palms are itchy and sore,

Like the men in their basements watching

The flexible Internet whore.

We’re delaying Easter this year with

All the yummy Italian food,

It’s becoming difficult to find ham and eggs,

Because some people are rude.

We will be gathering soon with

A kiss and a hug,

No more social distancing for fear

Of catching the bug.

I believe life doesn’t give you what you want,

It gives you what you need,

I choose to trust God and put my worry in His hands,

Wherever this may lead.

Peace, Health and 6 Feet!👸

Update on concerns

I have been wondering if being a bone marrow recipient changes the effect of this virus on myself, if God forbid, I become one of the afflicted.  The answer is ...yes, it would be bad.  I'm almost two years out from transplant which is good, but I'm still on an immunosuppresant which isn't good. I'm only on a small dose now, but I still need to be extremely diligent and so does my family in keeping this thing at bay.  I'm very grateful to BMT infonet for putting together information with transplant doctors from MGH, (my hospital) so I have an idea what is happening.  MGH is going through every transplant patient.  Of course those recipients in their 100 days are the primary concern.  Doctor appointments are being postponed for those of us further out and so are immunizations.  I was due for my two year check-up and shots in April, but I'm pretty sure that isn't happening for a while.  April 25th is my 2nd bone marrow-aversary! Looks like I'll be making my own bone marrow-aversary dinner at this rate. Gifts are welcome!  I'm kidding!! Or am I?  😂

I was going to sign the consent to be in contact with my donor at my appointment.  I will not be bothering MGH with that at this point.  They have very ill patients who need their attention, but if any hospital knows how to deal with bad shit, MGH does.  I will learn Hans's true identity when and if the time is right.

I do have a request for prayers for my donor in Germany (Hans).  I don't know who he is, but I'm very worried about him.  I feel like he is a member of my family that I can't get in touch with and I can't check on him.  The only thing I can do for Hans and his family is ask for prayers of health and love for my far away genetic twin.

Peace, Prayers, Health, Gratitude, and Elbow Bumps 😷

PS One good thing about everyone being home is that my blog is being read more.  Man, people must really be bored!

Sadie being cute this morning!

Lessons Learned

Earlier this week I went on quite a rant about COVID-19 and how it was making me feel.  Since then, I've come to the conclusion that maybe we all need to learn some important lessons from this thing.  I've definitely heard of some people being crap weasels by hoarding items and stealing out of other peoples' grocery carts, but for the most part I have witnessed, through Facebook, kindness.  People offering food and rides to the elderly among other things.  Maybe we were all just getting a little too selfish and needed a wake-up call worldwide!  Maybe, just maybe, it will bring us all together and we will remember to treat each other with our hearts.  Maybe, in the near future, our words will be for encouragement and not bashing. 

This morning my dryer pooped out on me and the weirdest thing happened...I didn't get mad, I just hung my clothes outside.  Then I thought that was possibly a lesson from the Big Guy about waste and my clothes needed to be outside to get rid of the virus.  Instead of anger I felt kind of grateful and protected.  I'm using the good old TP sparingly and the same thing with other paper goods.  I'm thinking about stuff.  I told my husband that we can't throw out anymore leftovers and I'm thinking of ways to stretch things.  I feel empowered.  I'm thinking about the things I've taken for granted and how I can readjust my way of thinking.  I'm not thinking about this virus in such a bad way anymore.  I mean, I don't like it and it's still a suck monster, but I guess life has a way of giving you what you need and not what you want.  Lessons are being learned and I believe that we are going to come out of this better than we went into it!!

Peace and Elbow Bumps! 💓

This F'en C Virus

When I first heard about the Corona Virus it made me nervous, but as I read more I was a little less afraid.  Then I read that it really only kills people who have a serious illness or are immunocompromised...hello, that would be me, so now I'm freaking the fuck out!  I'm following the rules and washing my hands constantly and disinfecting the surfaces that my family touches.  I'm becoming obsessed. 

Both my husband and son work around the public and that scares me, not only for myself, but for them too.  I'm not sure that they are being as diligent as I am and now the tailspin is beginning.  Are they really washing their hands as soon as they walk into the house?  Are they trying to keep their hands away from their faces?  Oh my gosh, I can't breath just thinking about all this.  Tears are literally welling up in my eyes while I'm typing. 

Yesterday I was a little freaked out, but not too bad UNTIL.. the Mayor posted about things being cancelled.  Now I'm beside myself.  Is this C virus really bad or not?  I don't know what's happening!!  Has the media blown this all out of proportion and are they the ones causing a panic?  WHAT THE HELL IS REALLY GOING ON???  Does anyone really know?  Now I'm getting a little pissed.  Is everyone being Chicken Little or is the herd being thinned out?  Breath in, breath out, breath in, breath out.

I didn't sleep very well last night thinking about all this.  I have my comedy workshop on Wednesdays and I have absolutely no intention of missing it.  It is the best part of my week and it's filled with laughter.  Then there is the graduation showcase next month, so this stupid face virus better not mess with my joy!  I also have tickets to a show at the Ridgefield Playhouse on Saturday night that I'm really looking forward to.  You know what?  Screw this C virus!!!

Here's a little known fact about me,  I live in fear quite often.  I'm terrified of being being bitten by a tick again and having MDS and Leukemia come back.  Two transplants are more than enough for me.  So being afraid of ticks means I'm nervous being outside for any length of time.  I would love to go for a walk outside, but I just can't.  It's hard enough running outside to try to stop the dogs from digging up the yard.  I'm afraid of mold, it can injure my bone marrow.  If I smell or see the hint of mold, I'm in a slight panic.  If someone is sneezing or coughing near me, all the color drains from my face.  It's not an easy way to live.  I can usually muddle through.

This C virus has done something to me.  I've been through so much shit for the past three years, that I'm angry that I'm dealing with this fear now.  I actually woke up this morning feeling defeated.  I never feel defeated!  I burst out into tears, because the fear is overwhelming.  I don't cry very often, but I'm shaken to my core over this.  I think I'm just so tired of being afraid.  Since I was diagnosed 13 years ago, there has always been an underlying fear of the c word returning and guess what...it did!  So multiply that fear by 10 and that's what I live with every day.  It sucks so bad!  Now with the threat of C virus my anxiety is off the friggin' charts.  I can't take being afraid of another thing!  This is overwhelming!  I will carry on doing the things I love, but this sucks!!  I also wish I knew the truth!  I hope the sky isn't falling.  This panic better not just be some political game.  The misinformation going around could have some dire consequences to peoples' health and well-being. 

See there, I went from fear to anger.  Please everyone, use your brains!!  I need to use mine too.  I've given this stupid virus too much of me already.  Time to write some comedy and give this C virus the big F you!!! 

Peace out Peeps 🐥

Being a Survivor

To begin with, I don't really like being called a survivor anymore.  When i had my first transplant in 2007, I loved being called a survivor.  I called myself a survivor.  I believed that as soon as I survived the transplant, that I had beat the beast. I guess I did for 11 years, but then the little bastard reared its ugly head again.  So is the word survivor really appropriate?  I don't know.  Maybe I'm afraid of the word after having relapsed.  I'm not some magical creature in this thing, even though I am a chimera! LOL!!  Okay, I am some magical creature!

After my first transplant, I was almost euphoric at having survived.  I had a party on my first bone marrow-a-versary.  I had a party for my fifth bone marrow-a-versary. I went to brunch with my closest friends for my tenth. Every year was exciting and a reason for gifts.  This time I barely acknowledged my first re-birthday.  It's been so different and more difficult.  People really rallied around me the first time and this time I was lonely a lot of the time.  I've often wondered if people were sick of me being sick and I get it.  Maybe it was that I did it once, so everyone assumed I would just get through the hell again.  I have gotten through it, but not with the joy and exuberance of the first time.  The sheer joy of being a survivor isn't here this time.  Could be the constant fear of another relapse.  Don't get me wrong, I'm more than grateful to be alive. I'm hopefully going to find out about my donor in April, but only if he agrees. I really want to know his name.  It would be really funny if it's Hans.

THINGS I DEAL WITH:

My PTSD can be very bad at times.  I don't say too much about it.  There have been times when I've tried to explain that a certain thing can set me into a tailspin, only to be told that I need to do it anyway.  That's just not how this shit works.  I have been set off by very small things.  Opening a makeup bag that I had at the hospital, literally made me a crumbling mess of hysterics on my bedroom floor.  Certain unexpected smells can transport me to unpleasant places.  Sometimes it's mild and I can sing the ABC's to get me out of it and other times I'll suffer with the residual affects for days.  I'm afraid to be outside in the Spring and Summer for fear of being bitten by another tick.  I'm nervous around children that I don't know, because they might have some illness.  I used to love kids.  I freak out if someone starts coughing around me.  Airplanes and cruise ships are a big HELL NO!!  I need to have a colonoscopy and I'm terrified to the point of tears to do it.  I never want to see the inside of an operating room again.  I need to find a new doctor, but I don't feel safe.  I don't know if I'll ever feel safe again.  Also, some doctors don't want to treat me because they aren't familiar with all this transplant stuff.  Yesterday on TV they showed a plane taking off from Logan airport in Boston and my breathing changed as I was transported to staring out my Boston hospital room watching the planes come and go.  These things don't happen every day, but they are there and they are difficult and they are real and they aren't an excuse.  If I say that I'm not ready to do something, I'm really not ready and I may never be ready.  I have anxiety every month when I go to get my labs done. I thank God when I don't get a call from my doctor to discuss results.  It's always a rough week after getting my labs done. 

I'm exhausted almost all the time.  It's a side effect of all the fun things I've been through.  It has gotten slightly better over the past two years, but nothing significant.  I had the fatigue after my first transplant, but now it's worse.  Maybe it's cumulative.  I can't physically go on long trips.  When we go to my doctor appointments in Boston, it takes me days to recover.  Between the fatigue and the pain in my hip, I'm spent.  Again, not an excuse, just a fact.  This has been a rough few years, but I look really good.  Let me qualify that, I look really good when I put on my wig, makeup and real clothes (not jammies).  Way too many jammy days have occurred.

I didn't write this post to be a sad sack, I only want people to realize that getting rid of the "c" word, doesn't mean you are all better.  There are physical and emotional ramifications from the battle and the treatment.  I've learned how to maneuver through most things, napping helps, so does swearing.

One of greatest thing that has come from this whole thing has been my love of writing that has morphed into my love of comedy writing and performing.  I really enjoy my comedy classes and laughing my ass off with my classmates.  I also love sharing the funny stories of things that actually happened while being sick.  Sometimes I resent getting sick again and rightfully so.  I don't think I'd be human if I didn't have those moments.  The really weird thing is that it's brought me to be who I am today and I kinda like me this way even though I still have work to do and learn.  I hope to be learning for a really long time.

Peace out Peeps! 🐥

My Baptismal picture.  I'm the baby! 😀