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!!