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!👸