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 🐥

Yale Doctor Visit

Last month I had to visit my Yale doctor just so he could order a PFT (pulmonary function test) for me.  I asked him if one of the side effects of my anti-rejection drug was hair being f'ed up.  He said he didn't know so he began typing away on the computer and it looked like he Googled it!!  Maybe there's a medical Google?!  I mean, I know how to Google!  He proceeded to say that it is known to happen about 35% of the time.  Of course I'm in that category!  The weirder or less common something is, it seems to find me.  It has worked against me a few times and in my favor a few times.  I like my Yale doctor and he was happy to put in the order for my test.

The test itself was done in Danbury and it's basically just breathing into a tube in certain patterns. One portion has to be done in an enclosed glass box.  I'm not claustrophobic, but the guy doing the test told me that people do pass out occasionally.  I assume my results were okay because I never got a call from either doctor.

My labs looked a little off to me last month, but no one seemed concerned.  That's okay because I was concerned enough or everyone!  I never really ever stop worrying.  After the first transplant, I was convinced that I would always be fine, but after the bottom fell out last year, I'm never comfortable.  I hope I will get to that point again some day.  I doubt it!  Once you have relapsed, I don't think you ever relax again.  I don't dwell, but it is there hanging out in the back of my mind.  The sense of security and complete health is gone forever.

Good news...my labs looked better this month!!  I can breath for another month!!  Next month is Boston and with any luck, my meds will be lowered.  I hate the yellow liquid I take every night, but maybe now that I finished my shots, they'll take me off. Fingers crossed!!

I almost forgot, the rude scheduler from my doctor's office, is no longer there. Hip, hip, hooray!! The new guy is very nice and pleasant!!

Enjoy this amazing weather.
Peace out Peeps 🐥

More results

Now that I'm further out from my transplant, I have to get back to all my yearly appointments.  Last Monday I had my appointment with the lower region doctor.  As every woman knows, it is the least liked appointment of all appointments.  Number one, the boobage gets severely smooshed between two plates and sometimes, for those of us who have a little extra love under the boobs, the tech has to push the fat out of the way.  Always makes me feel really sexy...not!  Then there is the complete lifting of the knockers up and on to the plate, because they are not the perky girls they once were and I know for sure that the poor tech's hands were covered with under the boob sweat. I mean, when your bazoombas look more like rice in a tube sock and hang almost to your waist, what do you expect?  Also, when I lay on my back and the jugs end up in my armpits, I wonder what is really sweating?  That's right, I have boob sweat and armpit sweat!  Oh my gosh, how humiliating!!  The humiliation continues as I continued to see the doctor.

First of all, I met with the nurse, who asked me to pee in a cup.  I don't know about anyone else, but I always pee before I leave the house and I'm not a pee on demand type of person.  This time I remembered not to pee ahead of time and it was a urination success!!  The nurse proceeded to weigh me and ask questions about my health since my last visit and my med list.  This is when the poor nurse got an earful.  Then I was brought to an exam room and told to take everything off with the gown opening in the back and a piece of paper to cover the punana region.  I don't know why, but I always hide my unders, when I disrobe.  I think it may be the whole cotton granny panty thing or the little balls from wear on my over the shoulder boulder holder.  Why am I shy about that when everything else is out in the open?  Yikes!!  Then the exam of the lower region took place and I couldn't get dressed fast enough after it's over.  There is a huge sense of relief when I'm out of there and back in my car.  Done for another year, but now I have to wait for results.  I feel like all I ever do is wait for results!!  A few days later there is a letter in the mail that my mammo was good!!!  Phew, another good report.  Next stops are a breathing test, colonoscopy and dermatologist, but they won't happen for a while.  I just want to get all this shit over and done with and get back to my life.  Every good test result is another step away from being sick! YAH!!!!

I'm not going to include any photos to this post, because that would just be gross!! Okay, I have to add a picture, because some weird ass thing showed up on Facebook! So strange!

Peace out Peeps 🐥

Bone density results

Hey everyone,

I never received a call about my results, so I called Boston.  My doctor is on vacation so his PA returned my call.  I have good bones!!!  WooHoo!!  I proceeded to ask what happened during my last biopsy when they had such a hard time getting the sample and she said she didn't know.  I'll ask my doctor when I see him in three months.  I'm a little concerned about what kept causing the instrument to slip. Also, I received more immunizations at my appointment and I had a bad reaction.  The whole upper part of my arm blew up and itched like a bitch.  I had a massive gun on my left arm.  I called my nurse and we were both surprised, because I've been handling all my shots very well.  I started Benadryl and within two days, my arm was back to its flabby ass self.  You know, the underarm wave that never ends!!

Then I had to call the scheduler to try to find out when my breathing test and labs and doctor appointment are scheduled for in October, I was told that the PA never put in orders for my breathing test.  We had agreed that I would get it done in Boston and then do labs and then see the doctor all in one day.  Well, when the PA called to tell me the results of the bone density, she said the agreement was that I would get it done locally.  I asked Lee and he heard the same thing that I did and it was all supposed to be done at once.  Whatever!!!  I have to contact Yale to get it done closer to home.  The PA then gave me an attitude about spreading my appointments out to 3 months.  She checked with my doctor and told me he said 12 weeks.  I said, "Oh, that's 3 months."  Did she think I was stupid and wouldn't realize that 12 weeks is 3 months?  I don't think she likes when I'm right and by the way, I usually am.

I had to speak to the scheduler again to see if I could move my labs and appointment up an hour, to the times I normally go.  She gave me an f'en attitude too!!  This might be their first rodeo, but it isn't mine!  She told me that he (the doctor) has other things to do and I'm not his only patient.  I told her this is how we always do it. She told me she'll speak to my doctor when he is back from vacation.  I asked if I should give her a call back in a couple weeks and she told me she'll let me know.  Yeah, right, I'll hold my breath for that phone call.  I don't know what was in the water in Boston that day, but no one is going to treat me like I don't know what is going on.  I've been there longer than both of them.  I really hope they aren't treating all the patients that are going through this hell, like they do me. Maybe they don't care for me.  Oh, who am I kidding, everyone likes me!! LOL!😂  Till next time.

Peace out Peeps!

Quick update

Good Morning,

Next week I'll be heading back to Boston to have my bone density test done.  It seems like I was just in Boston and this shit is getting old.  I'm sure it's getting very old for Lee too having to drive there in the early morning hours and then wait.  I will admit that I'm a little nervous, because things tend to go sideways at times.  I need to remind myself that it will be fine, but it's always a nerve-wracking appointment.

Remember when I wasn't able to eat?  Well, I've completely gotten over that and I've been gaining weight.  I'm happy and sad at the same time.  It's so good to be able to taste food normally again, but it sucks putting weight back on.  After my test next week, and I find out what is going on, maybe it will be easier to be more active and the pain will be managed.  What a pain in the ass! 😁

That's all for now and my next post will tell you how the test turns out.
This is a cool picture of George Washington's Headquarters in Newburg, NY. We visited there yesterday.

Have a great week and safe travels for those who are vacationing!

Peace out Peeps!

Feeling a little better

My hips and back are feeling a little better this week.  The fatigue is still pretty major, but I need to remember that my body has been through another shit storm and it will take some time.  I know it may never get better, so I'll just use it as an excuse to be lazy and watch TV.  Speaking of TV, for those of you who don't know me very well or at all, I am a major fan of ghost hunting shows.  Maybe I was preparing myself just in case things didn't turn out well with my last transplant, so I could haunt the shit out of people who had pissed me off!! BOO!  There was a show called Ghost Hunters and I was such a huge fan that Wednesdays were called Ghost Hunter day and we even went to see the guys on the show twice. The show went off the air a few years ago and I went through withdrawal.  Here's the big news...each one of the lead guys are coming out with new ghost hunting shows.  I'm so excited that I can barely contain myself.  TWO new shows!!  👻👻

That whole thing about ghosts really came out of left field, but I just write what pops into my head.  Well, not everything because that would be very disturbing to most people.  Lately, I've been thinking about my donor quite a bit.  My taste is still a little off and now I'm wondering if it's because of my new cells.  Pizza is not something I love anymore.  My favorite foods used to be cheeseburgers and tacos (I think I said that once before) and now I'm not much of a fan of either. I used to be able to put massive amounts of tacos down my pie hole and now I'll eat a couple and not love them. It's the weirdest thing. Yes, I still love soup! I wonder what Hans enjoys eating.  I also wonder what he looks like. 

My hair is still a travesty and I call it my Fred Mertz hair (google "I Love Lucy" if you don't know who he is).  It's a sad situation, but there are strands of hair in certain spots that are coming in black.  Even when I was young, my hair was brown, so this is very interesting.  I do miss my own hair, but the bottom line is, there is nothing I can do about it.  I'm just making the best of it.  The up side is that I can shower in like 7 minutes,  I can change my hair whenever I want to without having to live with a bad decision and I look kind of cute in a baseball cap. I can't wear fake hair while I'm cooking, because it will melt, which would really not be a good look.  I'm sure there are great quality wigs that it doesn't happen to, but I'm not buying them.  They can be thousands of dollars.  Anyway, back to Hans and how the hair thing ramble began, I think he has black curly hair.  I'm guessing that he is about 5'8" tall and a slender build and hazel eyes, leaning more toward green.  This is what I picture and I could be completely off base, but that's what I see in my minds eye.  My curiosity about him builds every day. I may never meet him, but I would like to know some details, if nothing else.  10 months to go before I can ask if he wants to be in contact with me.  Some donors say no.  That would be a little sad.  He's actually done more than enough for me, so it would be icing on the cake to be in touch with him.

Update on the bad dog:
Her new nickname is Shady, because that's what she is.  We started her on a new medication and she's doing much better.  She's more relaxed and not in a constant state of anxiety.  She seems happier and I think she's putting on some weight.  Her nightmares are also lessening.  All in all, we've seen progress.
She's demanding belly rubs this very minute.

Peace out Peeps

Sadie on the left and Jimmy on the right (he looks good for being 15 yrs old)

Stupid hips

Hey Everyone,
I know it's been a few weeks since I've blogged, but I needed a break after the waiting for the biopsy results.  It was very stressful waiting, I just needed some non-"c" word time.  I was attempting to be normal for a little while.  Okay, the being normal part wasn't very successful, so don't mock me out loud or in your heads!  The break from always thinking about this baloney was extremely needed.

I began my stress free time with Lee going to France for 5 days with his oldest son, Matt. Hahaha! 😂 They were there for the 75th anniversary of D Day.  Lee's dad had landed on Omaha Beach a few days after the initial wave and was a real life war hero!!  He earned a Purple Heart for injuries sustained and a Bronze Star for bravery.  Amazing, and I only wish I had had the distinct honor to meet my father-in-law.  Lee and Matt were able to follow some of the route that the original Bill Teicholz took while serving in the war zone.  What a great experience for both of them and some day I hope to be well enough to return with Lee and to head into Germany to follow more of Lee's dad's footsteps and to meet Hans (my donor).

Then to further alleviate my stress, Sadie, aka devil dog, aka cujo, aka bitch, went to the kennel while Lee was away. Phew, it was so relaxing.  Jimmy (our other dog) and I smiled with glee for the break from her highness.  Oh, did I tell you that we found her in a tree?  Yes, that is right, she jumped into the Y on a tree in order to catch a squirrel.  She also recently destroyed my prescription eyeglasses.  GRRR!!!!

I bet you are wondering about my stupid hips.  Well, they hurt really friggin' bad.  They are actually getting so uncomfortable, that it's becoming difficult to raise my leg to get into Lee's Grand Cherokee. Sleeping is not very comfortable, because every time I try to move, the pain wakes me up. One night I think I woke Lee up with my groaning and not in a good way. 😏 I can't wait for next month when I go back to Boston to have the bone density test done.  I'm praying that they can give me a shot or meds or something to help with this discomfort.  I'm also praying that it isn't something more serious than just some bone softness that can be corrected.  It's always something! LOL!

Here's a link to an article about my husband's trip to Normandy.
https://patch.com/connecticut/danbury/danbury-man-retraces-dad-s-wwii-journey-75th-d-day-anniversary

Happy Father's Day to all the Dads out there!  I know I'll be thinking about my Dad tomorrow.

Peace out Peeps!

Biopsy results

I'm keeping my promise and letting everyone know my results as soon as I found out.

My bone marrow is...PERFECT!!!!
My chimerism is 100% donor!!  I'm all dude and German!

Thank you all for your prayers and support.  Prayers are so powerful and support is essential.

I'm going to have a celebratory cup of coffee and a Boston cream donut.  Ha, Boston cream donut, how appropriate!
💗😀😘

Peace out Peeps!

No Results

Howdy!

I've had many people texting, calling and messaging to find out my biopsy results.  The answer is... I haven't gotten my results yet.  Hopefully, I'll hear something on Monday.  If not and you see a crazy woman (aside from the normal interesting people in my city), mumbling to herself, possibly singing extremely off key, with a wig on sideways, wearing Halloween pajamas with lipstick and eyeliner all over her face and her ass crack hanging out, it's just me!!  There's also always a slight chance of a freestyle rap or the chicken dance.  Who the heck knows what can happen when I snap!!!😜 Let's all pray that doesn't happen and I get awesome results soon.  By the way, those who personally know me, please stop picturing the description of myself losing my mind. You could be scarred for life.
Thank you everyone for being concerned.  You'll know soon after I know the results.

Peace out Peeps! ❤

Waiting for results

This sucks!!!  Waiting to hear if everything is okay, is pure torture. 

I had my biopsy on Monday in Boston.  It wasn't the easiest that I've ever had, but it wasn't the fault of any medical professional, it is my body.  Bone marrow biopsies have two parts.  First, the hip bone is  punctured and some marrow is aspirated (sucked) out of it.  It lasts about 10 seconds and if I count out loud, it's not too bad.  It's not comfortable, but it's not unbearable.  Then, a chip is taken off of the bone for pathology.  This is where things went a little sideways.  My hip bone may have softened, so the chipper thing kept slipping off of the bone.  The Nurse Practitioner is very good at doing this and I didn't even have any pain last time she did my biopsy.  This time, she asked a doctor to come in and try.  Guess what? He couldn't get it either.  They did get 2 small chips so hopefully that was enough for pathology.  If not, I have no friggin idea what happens next.  I will be having a bone density test at my next appointment in July and then we'll see if I need calcium shots or pills or whatever.  That's the least of my worries right now.

Back to waiting...tick tock, tick tock.  I'm in a fog.  I watch TV and I have to re watch shows because nothing is sticking in my brain.  I'll try to explain what it's like waiting for biopsy results, or at least what is happening in my head.  Here we go:  Where's my coffee? I'm not drinking coffee. Where's my water? Did I get water?  Is it in the frig?  Oh crap, I didn't get water. Is my cell phone volume on high enough so I can hear if it rings?  What if this is bad news?  Will I die?  My labs look good, so I shouldn't worry so much.  Oh wait, my labs weren't terrible when they found the MDS.  I can't breath.  I'm going to put this in God's hands.  What if it's my time?  Oh my gosh, I'm getting light headed.  Now I'm teary.  My hands are shaky.  This sucks!  FUCK!!  Why is all this happening again?  I'm going to be fine.  I'm so pissed.  I need to do laundry.  Maybe I'll bake something.  Those real (fake) housewives are ridiculous.  Stop fighting over dumb shit.  My back is sore.  Where are the dogs?  When is this phone going to ring?  I'm afraid of it ringing.  I'm so nervous, it's hard to think straight.  I'm hungry. I can't eat.  Are the doctors discussing my results right now? I'm scared. My nails need new polish. Please God let this be good news. And repeat many times throughout the day and night.  For all my friends and family who are dealing with me this week, I'm sorry if I'm grouchy.  I can't help it. I have a headache. I'm tired. 💤
Prayers are appreciated.
I will post as soon as I know something.

Peace out Peeps!

Biopsy next week

This will be a very short blog this week.  Next week I will be going to Boston for my 1 year bone marrow biopsy and I would really appreciate prayers for a great outcome.  I always get very nervous before a biopsy and I definitely am not looking forward to a long drive home on a sore hip.  It's not the biopsy itself that freaks me out, it's the results.  I may be a little crabby waiting for the call from the doctor. It usually takes 5-7 days before I know anything.  I'm thinking retail therapy could be a great distraction.  I may need some sandals for the summer.  I think I have approximately 70ish pairs of shoes, but they are all different.  Oh, I just remembered that I need a new pair of black (chucks) Converse!  I love my Converse sneakers.  I have pink high tops, blue high tops, white low, white with stars and broken down black.  Don't even get me going on my Skechers.

Anyway, Happy Mother's Day to all and I'm grateful to be able to celebrate this year. Last year, I got out of the hospital the day before Mother's Day and wasn't feeling so great.

I'll post as soon as I get the results from my biopsy.
Peace out Peeps!

Here's a picture of my Mom!!😊😘

Just stuff

I guess I'll start out with a brief statement about the dog.  Her name has been changed to Sadie.  The reason we decided to change her name had nothing to do with politics, it's because we found out that it was her original name.  Also, our friend, who is a trainer, told us that a shorter name is better.  She is challenging at best. 

So, a week or so ago, I got dressed to go out and put on my new, cute LLBean cardigan.  I had on a white button down shirt and my new sweater over it with 2 buttons buttoned.  As usual, I had to pee before leaving the house.  I had finished urinating and was drying off the lower region, when a heard a subtle plop.  I immediately checked my hands to make sure it wasn't one of my rings or a stone in my ring.  My rings were all on my hands and fine.  Then I thought maybe a little poop slipped out.  I checked and there wasn't any poop in the receptacle. I was baffled.  What the hell fell in the toilet?  Could it have been an old piece of toilet paper caught in a crevice and loosened up? After getting myself together, I realized it was a button from my new sweater!  I was kind of relieved that it wasn't something gross.  I flushed it and proceeded downstairs to tell Lee the funny story.  His response was, "Did you get it out?"  I laughed and said, "NOOO, I'm not putting my hand in a toilet filled with pee!"  We both cracked up.  I have to admit, if it was a ring,  a hand and part of an arm would have been pee infested or I would have sacrificed kitchen tongs for the cause.  I guess that would depend on my panic response and if I could think logically at that very moment.

Today is Cinco de Mayo, so I'm going to share a picture of the arroz con pollo that I made the other night. Don't drink too many margaritas!  I used to love margaritas, when I was allowed to drink. Enjoy!

Peace out Peeps!

 

1 yr bone marrow-aversary

Yesterday was one year since my second bone marrow transplant.  I didn't post until today, because it was a bitter sweet day.  I have to admit that I'm still bitter about getting sick again.  I remember, after my first transplant, I was so happy and I had a party.  This time, I'm a little angry and sad. I feel terrible, because I wish I could be the old me, but that isn't reality.  I feel like a burden all the time and it sucks!  I can't say thank you enough and I can't constantly feel like I owe people.  It's hard. It irritates me when I'm speaking to someone about my back hurting or whatever, and they say, "Well, at least you're here." Yeah, no shit Sherlock!! I really don't need to ever be told that.  Don't get me wrong, I'm extremely grateful for everything.  I thank God every day for this third chance, but I always fear another relapse.  I might look good and healthy and that's because... as Billy Crystal used to say, "It's better to look good than to feel good."  Does anyone else remember that from Saturday Night Live, when it was a good show? 😆

Enough of all the wah, wah, wah from me.  I'd like to acknowledge this milestone, by reminding everyone to get on the bone marrow registry.  There is an immediate need to diversify the registry!  Marrow matches are not determined by blood type, but by ethnicity and a bunch of scientific stuff (HLA matches).  Minorities, people of mixed race and mixed ethnic backgrounds are desperately needed.  The closer a match, the better the outcome for the recipient.  I know the term bone marrow aspiration can be very scary to most people, but many transplants are done through peripheral stem cells.  Bone marrow donation is done from the hip bone, and stem cell donation is almost like donating blood except you are hooked up to a machine that takes out the blood cells that are needed and puts back in your body what isn't needed.  Most of the time it's done through stem cells.  Mine were both stem cells.  As far as being nervous about the hip bone stuff, it is my understanding that you are knocked out and a sore afterwards. I don't know exactly what that feels like, but I have had 4 bone marrow biopsies in the past year and a half and I'm due for #5 next month.  It feels like a bruise at the sight for a couple days. I don't mind the biopsies and I love when I get good news.

If anyone has questions about donation or the processes, please visit www.bethematch.org
Also, please share this information with family and friends.

GET ON THE REGISTRY AND POTENTIALLY SAVE A LIFE

This is the shirt Lee gave me for my bone marrow-aversary!

Peace out Peeps!

Happy Good Friday!

Hey everyone!

Easter is on Sunday and I feel the need to say something.  I know I've never been the person who overly holds her tongue, but this post is about something very important to me.  It's one of those things that actually upsets me to my core.

Okay, here it is. Nothing is more disrespectful than using the Lord's name in vain!!  It drives me insane.  The name Jesus Christ should only be used in prayer, praise and celebration.  I never hear people using the name of any other Deity as a swear word.  I would never use a "name" of faith in a derogatory manner.  I don't understand why people find it acceptable to use my Lord's name in such a hateful manner.  It's not just in real life, it is also common place on TV.  It is so sad! 

There was a time in my life, when people had an issue with my religion and yes, it was discrimination.  I was actually told not to wear my cross around them. It wasn't even acceptable if I wore it inside my shirt, if it was still visible.

I wore a cross everyday for many years, so this broke my heart. It was so bad that I developed irritable bowel syndrome and hives.  Eventually, as most of these people came to know me,  our relationships became very good.  I spoke to one of people about using the Lord's name as a bad word and he said that he never really thought about it.  This gentleman stopped saying it and realized how offensive it is to some people.  It was a wonderful moment and to this day I still love him like a second father.  We taught each other a lesson. 

Sometimes, I think people do and say things without realizing how it affects other people, myself included.  One of my goals in life is learn and improve everyday.  I hope this post will make some people think.

Happy Easter or whatever you celebrate! 

Peace out Peeps! 🐣

Crazy dog

Hey all,

It's Saturday!  I'll start with the dog.  Last Saturday, my husband brought home a rescue dog.  Her name is Melania (my son named her). We have named most of our animals after family members, so she'll be called Mel for short.  Mel is my sisters' name.  We have had a Meredith, Johnny, Marky and Jimmy, they are my niece and nephews names. I know we're a little kooky and it has gotten confusing when the person and pet are together 😁!!  Melania has been diagnosed with whip worms, which means her poop has to be picked up immediately so it doesn't contaminate the soil.  Okay, I just stopped having to deal with all my own crap issues and now I have to deal with her shit!? Man. it never ends!  She also has serious separation anxiety, which is causing me to have serious anxiety. It's been very hard and if the medication and behavioral modification doesn't work, we will have to rethink this situation.  She is basically a good girl, as long as we are with her.  This is a tough situation and has caused many tears.  I'm praying all this stuff we are trying works for her, because she doesn't need someone else giving her up.  My health will come first if push comes to shove, but I'm hoping it doesn't come to that.

Last night I received a surprising phone call from one of our State Representatives. Danbury Day is taking place at our State Capitol and I am one of the honorees!  Holy craprooie!  They are honoring two Democrats and two Republicans and it takes place in May. State Rep. Gucker said that I'm being honored because of my 10 years of service on the City Council, my advocacy for blood cancers and bone marrow donation and my years of organizing the "Walk of Honor".  I am humbled and shocked. The delegation will also be doing a tribute to Marian Anderson, who was the first African American singer to perform as a member of the Metropolitan Opera. Miss Anderson's studio is still standing in Danbury, CT. It is going to be a very cool day.

Tomorrow is blood work day for me.  Please say a little prayer that all is still fine.
That's all for now.

Peace out Peeps!

Lee, Jimmy and Melania.

Poem for my Donor

DONOR POEM
by: Mary Teicholz

Not a day goes by that I don’t think about you.

I wonder who you are and do you think of me too?

I don’t know why you would give me such a gift,

But I do know your stem cells gave my blood quite a lift.

I feel a closeness to you even though you aren’t near,

You gave me your marrow and alleviated my fear.

It’s been a year, and I don’t know your name,

The funny thing is, our blood is the same.

All the words I can come up with to share my gratitude,

Are way too inadequate to suit my feelings and mood.

Everything seems contrite, because  you are a hero in my eyes,

You saved me from saying some very hard goodbyes.

Instead, I get to annoy my family and friends every day,

Giving me my life back is something I can never repay.

I can say thank you from the bottom of my heart,

I always knew your cells were strong, right from the start.

From the moment I was told that I was being put in the registry,

I knew that my match was going to be a male from Germany.

We are an ocean apart and I still felt that connection,

You are an amazing human being, and a perfect selection.

Your selflessness has given my life back to me,

You are a part of me now, a part I may never see.

A part that I admire and pray for every night,

I thank God for you always, my bright shining light.

Interesting discovery

I'll get to the discovery, but first I'll fill you in on my disgusting day yesterday.
I don't know what is going on, but I woke up yesterday morning with a stomach ache, again.  It progressed to pain, throwing up and diarrhea and I mean having to do laundry poopy stuff.  I think this may have to do with acid reflux, because my throat was all burny after I barfed.  This morning, I increased my stomach med, so hopefully that will do the trick. I'm still not feeling great, but I am a little better. I am such an awesome wife, that I left my stomach remnants in a small garbage pail on the back porch for Lee to take care of.  I know, I'm very thoughtful.  Hahaha!

I recently found out something very interesting, that had never occurred to me. When stem cells need to be transported from another state or even country, a courier picks up the cells and stays with them until they get to the hospital where the recipient is.  I never thought of that before.  I figured that because it's like blood, that the cells were put in a cooler, put on a plane and picked up at the airport by hospital staff.  These couriers actually fly around the world to get cells for those of us who need them.  It is all anonymous,  there is no way to show appreciation.  My courier flew to Germany and back and protected my cells until I received them.  Thank you to all the couriers out there for being a part of caring for a stranger.  It's amazing how many people that I may never know, have been such an intrical part of my life.  Another puzzle piece in my recovery.  It's all very cool.😎😎

Here's a reminder to share my rap video, so we can all raise awareness about bone marrow donation.  Let's keep those couriers really busy!!  Bethematch.org for more info.

https://youtu.be/DyReeZfFJOI

Peace out Peeps!!

Met with the District Director for Congresswoman Hayes

Hey all,

I received a message late Monday afternoon from Be the Match (BTM), asking me if I could meet with someone from the Congresswoman's office in Waterbury.  Lee wasn't thrilled with the idea of me going there alone, because he was concerned with the neighborhood.  I was more concerned about getting lost, which is exactly what happened.  For once, I left my house with time to spare, but I was still about 10 minutes late.  I finally found the address of the office, then I needed to find a parking space that wasn't too far away.  I was lucky enough to find a space around the corner, that was fairly close.  I was already in a pissed off mood, because I got lost and then the friggin kiosks to pay for parking weren't working.  I tried 2 of them and I thought it was just me until I met a woman on the street who was having the same problem.  I was late for my meeting and she was late for a dentist appointment so we both said screw it. 

When I finally arrived at my destination, I had to climb about a million stairs and lets be real, I'm not in the greatest shape.  I could't catch my breath when I reached the top.  I walked in the meeting room and met the Ambassador from Be the Match and the District Director.  The man from BTM  asked me to share my story, but I needed a minute or two to breathe and take my anti-rejection med.  I started telling my story, but it is a long story and I wasn't sure we were making our point.  The reason for the meeting was to ask the Congresswoman to sign on a letter in Congress to increase funding and the deadline was that day.  I gave the District Director, who I thought was awesome, a copy of my book and a copy of the poem I wrote for my donor (thanks Ginny for the idea to write another poem).  I don't know what the outcome of our meeting was, but I hope we raised awareness, if nothing else.  Especially the need for minority donors!

The person from BTM walked me to my car after the meeting to see if I got a ticket and guess what...I did.  He looked at the ticket, handed it to me said, "It's only $20, just pay it."  Okay, are you f'en kidding me?  I drove a half hour from my house, which ended up being an hour after getting lost, and finding out at the last minute about the meeting and preparing myself the night before and climbing Mount Everest (the stairs) and he never offered to take care of the ticket?  I was super pissed off at this point!!  That's a lot of nerve and I don't blame BTM, they probably aren't even aware that it happened.  I will think twice about working with him again.  I probably will if it benefits the greater good.  I can put it aside...I hope.  The last 3 sentences are how my mind works constantly.  LOL!!!

BTW, my back is feeling a little better.  I'm able to stand up without making an old man grunting sound.  Yah me!

Peace out Peeps! 😘

My back is still cocky!

Yippee, I am posting three weeks in a row!!  The cocky thing is that my back is still very uncomfortable.  I think it may be sciatica.  Sometimes when I step on my right leg, I can feel a zing down my leg and into my jaw.  Holy craparooie!  It has definitely limited my walking, leaning over to pick things up and standing up from a sitting position.  Stairs are the worst!!  I keep reminding myself that this too will pass.  It really is minor compared to many other things I've endured the past two years.

So, has anyone else had issues getting their meds?  I understand that some medications need to be very closely monitored, but when it takes a week just to get a prescription, something still isn't working.  I occasionally take a med that is for anxiety, nauseous, and a mild muscle relaxer.  It's an awesome drug, especially when I get queasy and don't need the heavy duty anti-nauseous medication.  Well it is now in that "needs to be watched" drug category.  The pharmacy couldn't fill it because it was a no refill and one of the Yale doctors said he needed to see me...yeah, no!  I called my Boston doctor and then checked with the pharmacy two days later and nothing had been called in.  I called Boston again and I was told that it needed to be sent in the mail, because it had to be a hard copy.  More days go by and I finally got the script.  Yesterday, I went to the pharmacy and they said because it was out of state they had to call Boston and have it verified.  Are you frustrated yet, because I was.  They called, which took a while and then I had to wait for my medication to be filled.  Yawn!!  It's a good thing I really like everyone at my drug store, because it helped with the aggravation.  I'm still confused why it couldn't have been called in, because it had to be verified by phone anyway.  To top it all off,  I've only taken 25 pills in a year.  Then, because I'm a crazy person, I went to the Post Office.  It was very busy.  Needless to say, it took me almost two hours to go to both places and I live 5 minutes away.  Phew!

I got the key chain for Hans, my donor!! I hope they will send it to him in May.  I also hope that he speaks English, so he'll know what it says. Maybe I should have done it in German.  Oh man!!  I often wonder who he is and why he did this for a stranger.  I wonder what he looks like and if he has a family and what do they think about all this?  I mean, there is some strange (stranger than they know)  American woman running (moseying) around the US with their familial blood coursing through her veins.  Does he ever think about me and wonder how I'm doing?  Have they made up a name for me  too?  What foods does he like or hate?  Does he even want to be in touch in a year?  So many questions and so much gratitude.  I already feel an unimaginable closeness to him.  Wouldn't it be funny if his name really is Hans?

Until next week,
Peace out Peeps!

Doctor update

Lee and I took another trip to Boston on Monday for my bi-monthly appointment.  My blood work is looking pretty darn good.  My platelets ( part of the blood that keeps you from bleeding to death) is in the normal range and increasing, which is phenomenal!  My liver is also improving, so I was taken off of one of my meds.  Now I only take nine pills a day, including my vitamins, and my disgusting liquid antibiotic.  It looks like mustard and tastes like a rotten banana with pee mixed in. BLECH!!  My doctor was very amused by my rap video and he just kept laughing.  Thank goodness he has known me for over 12 yrs, so nothing I do surprises him anymore.  My next visit is going to be the big one.  They will take more blood than usual, I'll be getting many shots ( I think four) and my 1 year bone marrow biopsy!!  FYI, I will be a nervous wreck waiting for the results, even though Dr Mac said he is not concerned.  I really can't believe it will be a year on April 25th since my transplant.  I'll be asking for prayers as it gets closer.

I'm going to write a note to my donor once I figure out what to say.  I can't give any identifiable information, but I feel like it's time to say something.  What do I say?  Thank you doesn't quite cover it.  It sounds like this stranger handed me a dunkin donut coffee, not his bone marrow.  I'll figure it out I guess.  I did find a small gift for him.  It's a key chain that says, "Because of you, I live". I need to order it so I can bring it to my next doctors appointment.  I'll post a picture of the key chain when I get it.

So, here's a minor cocky thing that's happening.  I hurt my back and hips.  We are not really sure what caused this, but the doctor suspects that I over used my back after not doing much for so long.  I have to say that this crap is very painful.  Advil and a mild muscle relaxer help me sleep at night, but makes me a little foggy during the day.  If it's not better soon, I'll have to call my orthopedic doctor.  I'm pretty good with pain, this is a new level of holy craparooie!!!

One last thing.  I need a new pillow.  This darn pillow is memory foam, but I suspect it has chemo brain, because it doesn't remember dookie.  It still has the shape of my head in it and I've been up for hours.  No, I haven't made my bed yet. I'm in search of a good pillow that isn't huge and actually has a memory. Speaking of memory, I forgot to add something to my do and don't list from last week.  It's about problems with memory.  Was that a good segue? Don't mock or make derogatory comments to someone who is trying  to find a word or jumps in conversation.  I like to say that I'm rolodexing, but my son calls it buffering.  Sometimes it takes time to recall and sometimes there is no recall at all.  My doctor said that medicine still doesn't know all the effects that chemo has on the brain, so please be patient. It's very frustrating for people suffering from this, especially when people don't understand.  It makes me feel stupid, even though I know I'm not stupid and it's not my fault. This isn't just about chemo brain, but it also happens with many different medical conditions.  We need patience and understanding, even though our recall may frustrate some people. 
Talk to you next week... if I remember. LOL!!

Peace out Peeps!

Things to say and things not to say

First of all, I'm going to try to post every Saturday morning.  This way everyone will know when to check the blog.  Next, thank you for all the views on my video.  The one thing I forgot and some of my friends have asked, How do you get on the bone marrow registry?  Here's the answer:  bethematch.org will give you all the answers for either getting on the registry or hosting a bone marrow drive.  It would be incredible if those of you who work in a fairly large establishment, asked to run a drive at work.  Employers love that sh.. (I gave up swearing for lent, so this will be a challenge)

I said in my last post that I would give some ideas about what to say and what not to say to people who are fighting or recovering from an illness.  I'm not an expert, these are just some things that I have experienced over the years. Feel free to add additional thoughts under this blog or under my Facebook post.  I'm sharing these things, because I don't think people realize how certain things can help or hinder an ill person.  I know it's difficult to know unless you've been through it.

To Do:

1. Ask if the person has to follow a specific diet and when it's appropriate, bring freezer food.  It's so hard to cook when you feel like crap, but eating is essential to recovery.  I know there were many times I didn't eat because I had no energy to make something.  Also, my family needed to eat something other than fast food.  (they don't cook)
2. Help when asked or especially when not asked.  Visit the patient (if allowed) and dust, vacuum, wash dishes, or put on soup.  Sometimes it's hard to ask for help, that's why you should just do it. 
3. Call or text or e-mail or message fairly often.  You have no idea how that can brighten someones day.  Cancer is lonely, yes I said that horrible word.  People often say they don't want to bother you, but not feeling like you have a support system sucks. 
4. Share your life.  I would not like when people would say to me that they didn't want to bother me with their trivial stuff.  Nothing is trivial and keeping in touch with regular life is essential to a patient. 
I know, at least for myself, if I didn't feel well enough to talk, I would say so. 
5. Offer rides to doctor appointments or just offer to bring the person for a ride.  It's great to get out and be a part of the world.  I wasn't allowed in public for a while, so these rides were incredible. (thanks Lee and Karen)
6. Pray for us if you are so inclined. One of my doctors may still be confused about why I had an angel statue, a Virgin Mary candle and a Buddha on my table in the hospital. I didn't want to blow his mind and tell him that my husband is Jewish.

Not To Do:

1. Don't say "your family or friends must really love you to deal with all this" We feel bad about putting everyone through all the stuff already.
2. Don't say "I like this wig better than the other one"  Boy did that one make me feel uncomfortable and now I don't want to wear a certain cranial prosthetic.  Actually, don't mention the wig at all in a public setting.  If I want to, I can, but it's up to me.  Just be nice and say, you look nice or don't say anything.
3. Don't assume that just because the person has a spouse that everything is being done.  Our spouses and children have a lot on their plates during this time.  They are still working and taking up most of the slack, but we need some assistance.
4. Don't assume that just because we look good, that we are good.  Recovery can be long and hard.  I can usually handle 2-3 hours, then it's nappy time.
5. Don't stay away.
6. Don't say dumb things! LOL!  Actually that's a blanket statement for all occasions!!

I'll ramble to you next Saturday.
Peace out Peeps!

Bitter sweet day

March 1, 2007 was the date of my first bone marrow transplant.  Twelve years ago today.  In some respects, it's hard to believe that it's been that long, but in other ways it feels like yesterday.  I'm going to be honest and say that the past couple days have been difficult for me.  My pleasant disposition (some may disagree) has been more frustration and general melancholy.  I will forever be grateful to my sister for being my first donor.  She gave me 11 years of healthy bone marrow, and it would have continued if it hadn't been for me looking so appetizing to a friggin tick.  I truly believe he or she was the culprit. 

Every year since T1 (transplant #1) , I had some sort of celebration for the anniversary and expected a gift.  I mean a good gift. LOL! This year I just feel sad and angry.  I'm pissed that it happened to me again and I don't get to celebrate 12 years.  I'm pissed that my body is screwed up and I'm always exhausted.  I'm pissed that my hair looks like shit and my nails are weak and brittle.  I'm pissed that food still tastes weird and I have to take a lot of meds. I'm pissed that my body aches all the time. I'm pissed that I feel so lonely sometimes and even my friends in the box (TV) are pissing me off with their nonsense.  Don't even get me started about the lunacy on Facebook!!  This all should have been over with T1!!  I have even cried a couple times the past few days.  It hasn't been easy.  I don't think I'm going to celebrate T2 (transplant #2)  this year, but we'll see how I feel next month. Yes, it will be one year next month.  I still expect a gift or two. (Lee, hint hint)

On the other hand, I still believe that things happen for a reason and maybe God thinks I'm one badass who can handle it all.  My faith hasn't been shaken.  I may have lessons I need to learn or lessons I need to share.  That is why I try to do everything I can to raise awareness about the bone marrow registry. Whether it's writing a book, blog or rap song, I'm not going to stop educating and learning. My next blog may be about things that are helpful to say to a sick or recovering person and things that aren't helpful.

I'm actually feeling better now and need to make dinner, so...
Peace out Peeps

Another surprise

No, I didn't do another video!  It was hard enough to memorize one rap, my brain needs time to recover.  I'm also not pregnant.  My name would really be fitting if I was, if you get my drift.  Time hasn't been my friend or maybe now that I'm thinking about it, time is my best friend.  I appreciate my days, even when they entail hours of the Real Housewives.  Most of those women need to be medicated.

I'm definitely eating better these days.  I'm still not a fan of sauce (not gravy) and when I start to eat certain things they taste okay for the first few bites and then...yuck!  Ketchup is another tough one. I still really like soup.  I'm trying very hard not to gain my weight back, but I also don't want my doctor to question weight loss.  It's a balancing act.  I would like to go for walks, but my neighborhood is in the shitter these days.  I'm not sure if I'm more nervous about getting run over by a car or getting shot.  I'm not a scaredy cat, but damn, I didn't fight the "c" word twice just to have some disrespectful, rude, law breaking, cocky head take my life.  Wow, that was an unexpected rant!  It's time for something positive.

Here's the surprise. I have new hair!!  I got it from Danielle Elizabeth Wigs in Ridgefield, CT.  What a great experience!  Danielle is very kind and understanding, because she is also a survivor, so she gets it.  If you know of anyone who needs a cranial prosthetic aka wig, you should send them her way.  There is also a Statute in Connecticut saying that insurance companies have to cover wig cost up to $350.00 once a year.  https://www.cga.ct.gov/2004/rpt/2004-R-0715.htm
I got a prescription for a wig from my doctor, copied the statute and sent my receipt for my wig to the insurance company, so hopefully, I'll hear something soon.  I'll keep you informed.

Have a great weekend!
Peace out Peeps

The SURPRISE is here!!!

My newly released rap video.  Written and performed by: Mary T
                                                  Video by: Lee T
Please share so we can get the word out!


https://youtu.be/DyReeZfFJ0I

Surprise coming up

Yes, I said a surprise is coming up, but you'll have to wait and see what it is!!!  Check back often!

I went to my BM (bone marrow, not bowel movement) doctor earlier in the week.  We were really lucky this time, because we actually were home from Boston by 1pm.  We left the house at 5:45am and got there early.  No traffic!!  I'm the only patient my doctor sees on Mondays so he was there and took me early.  My kidneys are in the normal range, which was shocking because my anti-rejection meds had to be increased and they affect the kidneys. Dr. thinks this is due to drinking and eating more. I ate almost a whole hamburger last night! That was the first good news.  Then, he said that my liver is a little better and my platelets (blood clotting) are almost in the normal range!  I'm getting better slowly, but surely!  I'm looking forward to the day that I can look at my labs and see everything in the normal range. 

That was the important news so now I can tell you my rib story.  This happened in December while I was in the midst of baking massive amounts of cookies.  Every night I get up at least once to pee.  This one night I was trying to get out of bed and for some bizarre reason, I was doing some weird acrobatic moves.  As I was attempting to squirm out of bed on my stomach, I got to the edge of the bed, on my stomach,  and I felt a pop!!  Please don't ask how or why this all happened, I really have no friggin' idea.  I didn't move for a minute.  I wasn't sure if I broke something and I wanted to be sure that I didn't puncture a lung.  I finally stood up and ran my hand all along my rib and there wasn't any pain so I was pretty sure nothing was broken.  I peed and went back to bed.  The next morning my rib was sore, but I'm sick of doctors, so I never got it checked.  I did have to take some time off from baking because I wasn't moving around very well.  Needless to say, no broken bones!  I either dislocated my rib on my side or popped ligaments or cartilage or whatever.  It feels better, as long as I don't try to sleep on that side for too long.  The moral of this story is...be careful getting out of bed to pee!!

One more thing.  What should be the title of book # 2?  (that's not the surprise)
FYI my blood type is now O positive.

Peace out Peeps!

Long time, no blogging! Yikes!

Wow, I didn't realize that it had been so long since I blogged.  I think with the holidays, everything got away from me.  If I was one to make New Year's resolutions, I would say that I'll blog more, but all I can say is that I'll try. 

Where should I begin?  In October, Lee got me a remission gift and we went to see Impractical Jokers at Foxwoods Casino.  They were great and I haven't laughed that hard in a very long time!!!  We didn't know what to expect with them being live and we were pleasantly surprised to see that they are equally as funny in person.  I was literally crying from laughing so hard.  It was an awesome gift!  I do have to admit that I'm very hesitant to celebrate any milestone this time.  It always kind of feels like the bottom can fall out at any minute.  So, instead of dwelling on that, I really try to enjoy every single thing I get to do and see. 

Speaking of that, this Fall was such a gift.  Every time we were in the car and I was seeing all the trees changing colors, I took a moment to thank God!  I wasn't so sure that I would ever see that again.  That has been happening quite a bit this past year, where I will pause and be grateful, even sometimes for the shitty stuff. 

Christmas was amazing!  My original plans for not doing as much this year went in the crapper.  Lee did his great outdoor decorating and helped with the inside decorating.  I warned people that there probably wouldn't be very many cookies baked, but there were more kinds than ever.  Damn you Pinterest!!!  It took me a long time to make them all, because my energy still sucks, so I could only do one at a time.  Then I found out that my nephew, his wife and my niece, her husband and daughter and my sister were all coming for Christmas Eve and my son had off from work...I could barely contain my excitement!!!  Christmas Eve was on big time!!  We played Cards Against Humanity after dessert, which was a riot.  I really have a bunch of sickos in my family, especially the ones who married into the craziness (Andy, Caroline, Lee).

My health has been fairly steady.  The doctor had to increase my anti-rejection drug, because I reached a low level and my liver is still acting up.  Stupid liver!  My hair is a travesty!  I look like and old man without my wig on.  The sides and very back are growing and there's this lovely tuft right on the top of my head. Oh, and it's all standing straight up with the exception of the back. It's ravishing.  Then the rest of the hair is very sparse, you know, like the old guys who always where baseball caps.  They might look distinguished, but without makeup, I resemble a something out of the Star Wars bar scene!  Scary Shit!!  I'm going to Boston next week for my bimonthly check and a shot of some sort. 

I'm going to attempt to blog once a week or so...that's if I remember.  Sometimes I have shit for brains, but I'll try.
Happy New Year!

Peace Out Peeps!!