CoVid Saga, Part one 11/29

 Hey Turkeys,

I'm writing this to let people know what this blasted virus is like and I also want to keep track for book number 2.  So much has happened in the past three weeks, but I would like to start with something positive

The nurses and PCTs at Danbury Hospital are amazing.  Their circumstances are beyond trying and through it all they were fabulous!!  I was treated with care, dignity, warmth and they fought for things I needed.  They even made sure that I had food, if I didn't order anything.  Very bad food!!  These young women and men came into my room everyday with encouraging smiles which was comforting.  They helped me do everything, and I mean everything!  I believed that they were doing good work, but to see it in person, is truly awe-inspiring.  They were my rocks.  Thank you to all of the people who cared for me so wonderfully.

I was going to say something about the doctors...next post.  Only positive today!

Peace out Peeps

Another Bump in the Road

Hey All,

When I said another bump in the road, I meant it figuratively and literally.  That's right, the GVHD in my mouth is back, but not as bad.  The back of my tongue felt funny and when I looked in my mouth, I saw a bunch of white bumps...so gross.  I'll try to describe the feeling.  It's like eating something gooey (like fig newtons)  and it gets stuck on the back of your tongue so you drink something or do a quick finger sweep.  Oh come on, you know some of you have used the finger sweep, you can't kid a kidder.  Anyway, I feel like something is stuck all the time and the bumps are also down my throat.  Not painful, just annoying.  As soon as I noticed the bumps, I called my doctor and my stupid steroids were upped.  Call me moony moon moon face... and body.

I do have a little rant to share.  No, it's not about politics, because nobody got time for that!!  In the past couple weeks a few people have said to me that they didn't share their problems with me because I have enough on my plate.  Well, that's bullshit and it really pisses me off!!  I'm already completely isolated from my friends and family, so does anyone really think it's a good idea to isolate me more, to eliminate me from your lives?  I'm not a fragile china doll and I have proven that on more than one occasion. Do you want me to stop telling you things, because that can be arranged.  I've heard stuff like,"You have enough on your plate". I say, "So what"! Am I supposed to sit around here and wallow in self pity?  Ridiculous!!  BTW, I'm really sick of myself and all my crapola.  I'd like to know about other people and not just the good things, all things, good, troublesome and bad.  So get with it people!!!  I'm a big girl and getting bigger every day.  DAMN steroids!!  When this covid stuff is over, I will be bitch slapping some people if this continues.  PHEW, it felt good to get that off my chest.

Peace, Face Masks and Sharing bad shit! 😷

Beautiful flowers my sister sent to me!

Another week of doctors

 Howdy,

I guess I'll start with my eye doctor.  Well, my permanent plugs that were put in my eyes fell out.  Not so permanent, LOL!  Next step, autologous serum tears.  I give blood and the red blood cells and clotting factors are removed to make eye drops for me.  It's fairly successful, but it isn't covered by insurance.  I think that it's about $100.00 per month.  Yikes!!  Maybe this is where the term "bleeding money" comes from.  It's literal!!!

On to the Boston appointment.  It was okay.  My liver is almost in the normal range, which is good news.  My red blood cells aren't great, which could be from my meds and would explain my exhaustion.  Most of my GVHD seems to inactive. I'm still having some mouth issues, my GI tract acts up and the muscle cramps are crazy!  The anti-rejection medications are making my fatigue worse and that's what is causing the muscle cramps.  I get them in my fingers, legs, toes and back. When I told my doctor about the cramps in my back, he said that is unusual (of course it is) and those are large muscles so it must really hurt. LOL!  Yes, it does hurt. 

I discussed the serum tears with Dr Mac and I asked him if it was okay to use my own blood because, let's be real, it's kind of shitty.  We laughed.  We always have the serious part of the conversation first and then all bets are off.  My doctor and I always end up laughing.  Anyway, my steroids were lowered again, but everything else is the same. I'm all set for Halloween with my Nick Nolte hair, my funky looking eyes and my very round moon face. Uncle Fester has nothing on me and I don't even need a costume!  Boo!  I hope life gets back to normal fairly soon and I wish you all good health.

Peace, face masks, and Halloween! 😷🎃 

Oh CRAP!!

 Hey all,

I had my checkup at the eye doctor and the amniotic stem cells are not working.  My left eye is right where I started.  I went through 2 weeks of pain for absolutely nothing.  Saying I'm discouraged is an understatement.  There are definitely times that I kind of wish that I never had the 2nd transplant and then I think about all the things I would've missed if I didn't do it.  I'm really getting sick of this whole thing.

Anyway, now we are trying plugs in my eyes.  They don't hurt, but I can feel them in there.  I'm sure that is from my eyes being swollen all the time.  If this doesn't work, there is another thing I can try, unfortunately, insurance doesn't cover the last resort. (I need to read more about it before I try to explain the next step)  I'm really hoping and praying that the plugs and meds do the trick.  I've lost some hope that all this will ever be resolved.

Even though I'm sad, please know that I'm not giving up. I'm just allowing myself some time to feel sorry for myself.  It won't last long.

Peace and Face Masks😷

Eye Doctor and Boston last week

 I have some decent news for a change.  First the eye doctor.  My right eye is much better and my left eye, the bad eye, is healed from the cornea scratch, but it's still not great.  I was actually able to drive myself to the eye doctor, which was awesome!!  I was free if only for a few minutes.  Initially, I didn't drive because Lee was home for months and there really wasn't anywhere to go and then I didn't drive because of the pain in my eye.  I'm able to keep both eyes open now and with my glasses on, I can see!!  Yippee!  Anyway, we are trying the medications for another week and if that doesn't help with the extreme dryness in my eyes, we are having those plugs put in my tear ducts.  I'm willing to try just about anything at this point.

On to Boston.  All of my regular labs look good and my liver is improving!!  It seems like the GVHD is not showing any new signs and is improving most places, but it is taking time.  It is still visible on my face and chest and under the boobage.  My mouth is better, but my gums are still pretty sore.  My doctor lowered my steroids again and with any luck this won't cause a flare up.  I'm hoping that my moon face and butt and neck and mid section will go away and have been caused from the steroids and not golden oreos. Fingers crossed!  Damn golden oreos, why are they so delicious?!

Peace, Face Masks and looking forward! 😷

Rollercoaster Ride

Howdy,

To get you all up to date, I had the stem cells put in my eye.  The procedure was not bad, but the aftermath has truly sucked.  I don't notice the cells, it's the friggin lens they put in my eye that is brutal.  Actually, between the swelling and the pain my eye is barely open, so if my spelling sucks or something doesn;t make sense, it's not my fault!  I can't fucking see!!  I saw (well not really saw) my eye doctor to get everything checked and he said I'm progressing, so that was ok news.  I go back on Monday again and the devil of a thick lens should be coming out. This has not been a pleasant experience.  I should be used to unpleasant experiences by now, but this not seeing well bullshit has really dampened my life.  FU covid, FU GVHD, FU my big fat steroid face and lastly, for those of you who live in Danbury, FU John Oliver!  I just cracked myself up!😂

I do have some really bad news to share for those of you who don't already know.  My sweet husky Jimmy passed away on Monday.  My heart is broken and that's enough on that subject because crying hurts my fuckin' eye!!

Peace, face masks and hopefully better days to come. 

Saw Boston Doctor on Tuesday

Hello,

Well, my eyes still feel terrible and I hope the stem cell thing on Saturday helps.  Dr. Mac was surprised that the skin GVHD is still on my face and we both suspect that it may scar.  That's not really a big deal, because I can always cover it with makeup if I want to.   I gained weight from these stupid steroids and my moon face is very round.  I wonder if there is such a thing as moon butt, because I think I have that too.  I told Dr Mac that i don't have roid rage, I have roid weep.  I cry every day, so I'm ready to be off of this shit.

My blood pressure and heart rate are both up from all the anti-rejection meds, so I'm going back on blood pressure meds and my anti- rejection was increased.  I don't feel like I'm going in the right direction with this thing.  Honestly, I'm feeling a little discouraged.  The new anti- rejection (there are 2) is causing extreme exhaustion.  So...my eyes hurt so bad that I have to close them often and when I do I tend to dose off.  This is crazy.  It's very uncomfortable to be in the sun, wind and heat, because my eyes feel like they are on fire.  Same thing when I try to cook dinner and the heat comes up from cooking.  

Another tough side affect from my meds are muscle cramps, mostly in my feet and hands.  My fingers cramp so badly that they feel like they are dislocating. Last night I had to stop eating dinner because I couldn't hold my fork.  Chopping is a nightmare.  I need a chef!!  Sometimes, my toes will cramp and I'll drag my foot like Quisimoto.  I'm telling you, I am one hot looking chick with my moon face and ass, my scars, my sore red gums, my swollen flaming eyes, constant diarrhea and my funky fingers all while dragging my foot behind me.  What a sight I have become!! Woo Hoo!  Don't be jealous.  

I don't share this stuff to get sympathy.  I write this so other people going through something similar, don't feel alone.  I also feel like it's important to educate people on this stuff.  I know that I'll get through this, even if I'm a little battered and bruised.  It's all more fodder for writing comedy and believe or not, some very funny crap has happened.  

My fingers are starting to cramp so I'll fill you guys in after the amniotic stem cells on Saturday.  Please say a little prayer for my eyes.

Peace, face masks and health 👀😷

My eyes suck

Hi Everyone,

This will be a short post, because my eyes suck and it's difficult to see.  The GVHD in my eyes is not getting better so I will be getting amniotic stem cells in my left eye in about ten days.  They put the cells in my eye and then a contact lens over them for about 2 weeks.  It's kind of interesting.  Incredibly enough these will be the third stem cells, other than my own, to enter my body.  Can we all say freak of nature!!  Can we all say thank God for this science!!  

My other GVHD stuff is improving.  My mouth is better, but my gums are still sore.  I'm still having some trouble swallowing, the lower region is much better and my skin is improving.  I'm also heading to Boston for a recheck this week and hopefully my liver and kidneys are handling all these meds okay. 

I'm not looking at Facebook or my phone very much, because, honestly, it really hurts.  If anyone wants to talk to me please call, because it's easier for me.  My eyes have dry patches on the cornea so sunlight or any bright light really bother me.  Believe it or not, it's hard to cook because of the heat from the stove or oven and I have some double vision so chopping is an adventure.  I guess this is just another learning experience for me and hopefully this blog can help someone else going through something similar know that they are not alone.

Yes, I did do the Virtual Zoom Comedy Showcase last week.  I'm not thrilled with my performance, but the other comedians were absolutely amazing!!

Peace, Face masks, and Missing People

I emailed Matthias

Some people have asked me if I've been in touch with my donor yet and the answer is, kind of.
I sent an email to Matthias on July 5th, but unfortunately, I haven't heard back...yet.  I'm thinking that there is always the possibility that I received the wrong email address or it went into a spam folder or he changed his mind about getting in touch.  I'm also hoping nothing is wrong with him or his family.  My next step is going to be to write him a regular letter.  I don't want to be a stalker recipient, but a quick hello would be nice.  This is hard, especially because a part of me always thought that he wouldn't want to be in contact, but he signed the consent.  I'm not freaking out, I'm just very curious.  He doesn't owe me anything...I mean he saved my life, so he's awesome!  I really don't have any idea what is happening over in Germany with this shit show virus, so that could always have something to do with not hearing back.  Time will tell.

On a brighter note, Monday is my Zoom Virtual Comedy Showcase!!  There is going to be all new, hysterical sets from all of the comedians and as my awesome teacher, Christine O'Leary says, "We are doing the pandemic pivot"!  The advanced class had their Zoom Virtual Showcase last night and they rocked the comedy world.  Hopefully, we can do the same on Monday night.  Anyone reading this regardless of where you live, or if you are wearing pants,  can all be a part of this new phenomenon for only $20.00.  Yes, I said $20.00, and it's fun!!  Remember fun?  This isn't a show for the kiddos, so put them to bed early on Monday night, have a beverage, a snack and a little cuddle with your significant other or yourself and just sit back and laugh.

Peace, face masks, and laughter 😷😂🎤

Here's the info:

BIG News!!!

Hey Everyone! 

Today was my two week check-up in Boston.  Dr. Mac is happy with my progress and said that most things are about 50% better.  (Not the big news)  My liver enzymes came down by almost half, which was one of the things I was most concerned about. (Still not the big news)  The lower forty is doing better, my skin is improving,  my mouth sores are almost gone and swallowing is a little better. (Still not the news)  My meds are being adjusted a little and...I'm coming back!!! (Not the news)

While I was there, I asked my doctor if he had heard anything about my donor yet.  It's only been 6 weeks, so I wasn't expecting anything.  He hadn't heard a thing and he said he would check with Nina, my coordinator.  Many of you don't know that I originally didn't want to be in touch with my donor.  It is absolutely impossible to thank someone for saving your life!  There are no words!  I did send him a gift on the first anniversary and wrote him a poem, but nothing does the job for an appropriate thank you.  I had pretty much decided to let it go.  Then, as the two year anniversary was approaching, my feelings changed.  I needed to know who this man is and why he would do this for a stranger in another country. I signed the consent.  I've been petrified that he wouldn't sign the consent and he didn't want to know who I am.  I was convinced that he would always be "Hans"  to me, my wonderful mystery man.

Lee and I got home from Boston at about 1:20 this afternoon.  Lee was checking his phone and I was looking up something for a comedy routine on my phone when I heard the little "You've got mail" bing.  It was from Nina.  She just received some news for me.  He signed the consent!!!!  I now have my donors name, address, phone number and e-mail!!!  I read his name and burst into tears.  I was sobbing as I was trying to tell Lee about the e-mail.  I held my couch blanket up to my face and just cried.  I'm not sure why I had such a reaction, but I cry every time I tell someone about this.  I now know the name of a big part of me.  I'm finally complete!  His name is Matthias.  Isn't that the most beautiful name you've ever heard in your whole life?  Okay, maybe not for you, but it truly is for me. 
His birthday is in a few days, so I think I will wait and send him an e-mail then.  That's if I can wait.
That's the BIG News!!!  Now to find out what he looks like.  I'm glad that I have a decent head-shot to send if he asks.  I don't want him to see this GVHD mess.  I don't care what he looks like, I just want to see his beautiful, generous face!!

Peace, face masks and awesome donors! 😷

My new swarovski watch that I've wanted for a long time.

Mass General Visit Yesterday

My bone marrow doctor wanted to see me, so we headed to Boston yesterday.  We actually got there in 2 hours and 15 minutes, which is an all time record.  It usually takes about 3 and a half hours.  Yah, covid!! I really hope all those people keep working from home.  We left our house at 6am and we were home at 1:30.  SWEET!  The doctor appointment wasn't so sweet.

My labs were good and no sign of "c" word.  But...the GVHD is not good.  I have it in my eyes, skin, mouth, throat, my under carriage and liver.  I also have 2 kinds, acute and chronic.  The acute ones are mouth, skin and lower region.  Chronic are eyes, throat and liver.  I think I got that straight, it was a ton of information.  Acute is being treated with prednisone and the chronic is being treated with Jakafi.  Jakafi is a very expensive med and needs to come from a specialty pharmacy.  Luckily, my insurance approved it so now I wait for a call from the pharmacy to have it sent to me.  I hope this happens quickly.  The prednisone should start to help fairly quickly, because have sores and a raw mouth is making eating very difficult.  Brushing my teeth brings tears to my eyes.  Speaking of eyes...I have to call my eye doctor and I may need to get plugs in my eyes to keep the moisture in.  I never knew that tear ducts are on the outside of your eyes and not near your nose.  I found that interesting.  My throat will take a while to get better.  The muscles that help with swallowing are affected, almost like a muscle failure.  It sucks, but even with all these eating issues, I haven't lost weight.  I'm almost looking for to the prednisone effects and getting more energy.  Maybe I'll even start my chore list that I wrote when this shit show started. HA!!  One more bizarre thing, I'm slightly allergic to the donor cells.  Of course I am, why wouldn't I be?  The weirder things are, the more likely I am to have it happen.  I'm so damn special! 😆

I return to Boston in 2 weeks and I'm praying that there is a significant improvement.

I like to end with some good news.  I asked my doctor if I'll be able to perform my comedy at the graduation showcase at the end of July (if it's able to happen)  and he said YES!!  I have to wear a mask and stay away from everyone, but I can take the mask off to perform and then go back into leper mode.  That news made my day!!

Peace, face masks and healing

This is Zephyr the wolf. I ❤ him!  He's at the Wolf Conservation Center in South Salem.

Graft Verses Host Disease has exploded

My GVHD has decided to go a little crazy.  The medicine isn't working for my mouth sores, the rash on my face has gotten worse, my lower region stings like hell when I try to pee and poop,  I have red spots on my chest and swallowing is horrible.  Even trying to drink water is like drinking shards of glass.  This has not been fun, but believe or not, I don't feel too bad.  Well, I don't feel too bad as long as I'm not eating, drinking, peeing or pooping. 

I called my Boston doctor yesterday and he put me back on anti-rejection medication.  Hopefully, this does the trick.  The problem with this is, is that it suppresses my immune system and makes me more susceptible to the nasty virus.  UGH!  I keep telling myself that this is only a bump in the road.  I will be going to Boston in a few weeks to get checked out and hopefully get my final immunization.  I'm almost looking forward to seeing Dr. Mac, because he always makes me feel better about things. 

My sister was such a close match for my first transplant, that I didn't experience any of this stuff.  I'm still very grateful that she did that for me.  The good thing about having some GVHD is that the donor cells also attack random bad cells that may be lurking in my body.  All in all, not a bad thing...as long as we keep it under control.  Please keep me in your prayers.  Keep our country in your prayers!

Peace, 6 feet and masking it up! 😷 🙏

GVHD in my mouth!

Hey quarantine peeps!  I think I told you all that I went off of my anti-rejection drug about a month ago.  Two weeks ago my mouth started getting very dry, but I didn't think much of it.  I just thought that my body was adjusting.  Thursday evening my mouth was bothering me so much, I decided to look in my makeup mirror on the high power check out blackheads mode.  Holy CRAP!!!!  The inside of my mouth is covered in white sores.  The sides of my cheeks are covered with the white sores and even my gums are yucky.  It scared me.  What now???  I'm so tired of this shit.  I called my bone marrow team yesterday morning and although I thought it was thrush, my team member said it may be GVHD.  That is when the donor's T cells attack recipient cells.  A little GVHD is good, a lot is bad.  The PA set up a video appointment yesterday afternoon and she thinks it's GVHD because the timing of going off of my anti-rejection makes sense.  Then, of course there is always a debacle of deciding which medication.  First she said that I needed to get a medication from a compound pharmacy, then PA calls back and says that my doctor wants me on something else.  I have to rinse my mouth 4 times a day for 4 minutes and not eat for 1/2 hour before or after.  Not a big deal.  The problem was finding the medication at a regular pharmacy.  I have to say that the woman at CVS called everywhere for me and then finally the pharmacist saw that it could be one solution or another, so they were able to get it for me. It took from 3:00 to 5:00 to figure all of this out.  I can't say enough good things about the service I received from CVS on Lake Ave Ext.  It was so much better than the horrendous service from Home Depot, but that's another story.

I'm hoping and praying that this works and I don't have to make the trip to Boston.  Lee would have to drop me off and keep busy in Boston, because he won't be allowed in the hospital.  I know after that trip he will have to pee pee, so I hope he would find a clean place.  I'll have to pee pee too, but I'll find clean potty in clinic.  I just want to feel good for a long time and not be in constant fear anymore.  Between this f'en virus and now GVHD, I'm a little bit on edge.  I can deal with the pain, the fear is  overwhelming.  Oh and I have a post nasal drip cough.  😷😣

Peace, Hand Washing, and Quarantining,
I'm fine just frustrated!!!

Bone Marrow-aversary

Saturday, April 25th was two years since my 2nd bone marrow transplant.  I know it may not seem like a big deal to everyone, but it's a huge deal for me!  I wasn't sure that I would be able to survive another transplant, because my body had already been decimated once.  It was so scary! I don't look at things like I did before my relapse of MDS.  After my first transplant, I truly believed that I was totally and completely in the clear from the "c" beast.  Now, I will never feel safe again!  It not only can come back, but it did.  That is why I think April 25th will be a very important day for me. Every year that passes is a victory.  I sometimes wonder if Hans thinks about the day too?  It's weird.  I still haven't received my consent forms to be in touch with Hans, even though I've asked three times.  I think maybe MGH just has a lot going on right now, so I'll be patient.  He may want to be anonymous and I'll respect his decision.  He's done more than enough for me already.  I hope and pray that he is healthy and doing well in life.

Anyway, Lee remembered my bone marrow-aversary and bought me a beautiful Swarovski crystal necklace.  Then, because I've been cooking my little fingers to the bones, we ordered Chinese food for dinner.  I've been wanting to order from Kai's Place for a while and this was the perfect occasion for a treat. Lee lit a fire in the fire pit and we roasted marshmallows for dessert. 

Peace, hand washing and social distancing peeps!🐥

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! 😀

Comedy Video

Since I haven't had any doctor appointments lately, I thought I would share what I've been up to.  Last September, I decided to take a stand-up comedy workshop at the Ridgefield Playhouse with the amazing Christine O'Leary.  I never, in my wildest dreams, imagined what goes into stand-up.  This shit is work!!  Great, incredibly fun, artistic work!!  I've learned so much and I've loved every minute of my new passion.  After my last transplant I was really struggling to find my way again.  Christine and my classmates, who are some of the funniest people I've ever met, woke me up to a whole new world of laughter and love for life.  We had our Graduation Showcase in November.  I was so freakin' scared to be on a big stage by myself, but it was AWESOME!  I will share the YouTube video. 
Warning:  Adult content so if you don't like off color humor or bad words...don't watch.
https://youtu.be/FFU2POVWyXI

I will be taking another workshop in March and I can't wait.  I've been writing as much as possible.
BTW, a lot of my comedy is about being sick and the bizarre things that happened.  I do believe laughter is the best medicine.  I will post when the next showcase is (I think April 27th at the Playhouse) so you can have an incredible night of fun and witness comedians being born.  I've never enjoyed myself so much!!

Peace out Peeps!🐥

Photo by: Monika Nagarsheth