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