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!🐥