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

Boston Visit Today

I think today is the first time I've been able to breath in 3 years!!  My labs are getting better all the time.  Platelets are in normal range and one of my liver levels is normal and another one is almost normal.  Holy crap!  My doctor lowered my anti-rejection drug to one pill a day, which means I don't have to stay awake if I'm tired at night, I only have to take the morning pill!  No, not the morning after pill.  HAHA!  Here's the other exciting news, I don't have to go back to Boston for 6 months!  Yes, I said 6 months.  I almost burst into tears from all the good news.  I haven't heard this much good stuff in so long, I was beginning to feel like I was never going to get really better.  Now, I know I'm on my way.  I can't even describe how I feel this afternoon.  There has been such a heaviness in me for so long and now I feel like it's lifting.

I think between Lee getting me out and about on the weekends and this stand up comedy workshop I'm taking (laughter is the best medicine),  my body is healing...finally!
I'm going to rate this post like I do restaurants.

Rating: 😂😂😂😂😂 5 faces with tears of joy!

Peace out Peeps! 🐥

Pulmonary Function Test results

My Boston doctor sent me an email earlier this week and told me that my blood work looks good and my pulmonary function test (PFT) was better now than it was in April.  That is great news because it means that I don't have GVHD in my lungs!!

I'm still struggling with fatigue, but the more I walk the better I seem to feel.  It's still a struggle.  I always try to remind myself that it could be a whole lot worse and I'm doing pretty well considering my body took another substantial hit.  Tired I can handle.

I've been taking a stand up comedy class, so I spend a lot of time writing.  It's keeping my mind busy and it gives me something fun to do.  It may be the best thing that has happened to me since the tick bite and transplant.  For the first time in almost three years, I'm starting to feel like myself again.  My teacher and the people in my class are great.  I literally spend two and a half hours once a week laughing my ass off.  They will never know how much they have all done for me. Every single one of them are some of the funniest people I've ever known and on top of that, they are all so nice. I didn't even realize how sad I was until I wasn't sad anymore.  I'm so glad that I followed my gut and took this class.  I may take the next one too!!

Peace out Peeps 🐥