Can't Sleep...

This week, I was put on Vitamin B12 supplements by my doctor after noticing a trend in my bloodwork the past few months.
It was like someone flipped a switch.
My energy levels improved the day I took my first B12!  I had been going down for a 2-3 hour nap every afternoon, and now I'm at the point where I am tired, but I can't sleep.  My mind has so much energy, its making me nervous.

I guess I am concerned, tired, bored, and have lots of ideas...and can't sleep.  1 am and I am up, dreading the fact that I know how tired I will be tomorrow and with all the stuff I have on my list to do.

In other news, my hair is coming  back and its curly.  My hair was straight as a rail before my cancer--- isn't that wild?

I'm getting hot flashes again.  That sucks.

Wow this seems like a bit of a negative post-- sorry about that, can you tell I'm tired??

Have a good night!

A Word To The Wise

Last week I had my wisdom teeth removed.  The ones that came in almost 20 years ago, plus the little bastard that decided to start coming in the week my cancer was discovered.  Doctor took them all out, and I was awake for the entire procedure.  He only used a local.  It has been one week, and I am still adjusting to a wretched life of soft foods. 

Yesterday was the first day I could use the little plastic syringe they gave me.  Honestly, it made a world of difference.  My gums are less inflamed today, and the pain is significantly less, but it does still hurt.

What hurts?  My jaw and biting hurts.  All my teeth feel super sensitive (still).  I think it’s because they were under so much pressure for so long.  My bottom teeth started to crowd, even though they didn’t hurt until last February, when that final tooth decided to make an entrance. 

Mental note to self:  Take care of the rest of your teeth for the rest of your life.  Take care of Frank the Dog’s teeth, too.  That little guy will be miserable if he can’t enjoy a hard, crunchy, juicy carrot. (his favorite).

Part of me feels this pain is so bad because I was awake during the procedure, which, by the way, wasn’t fun.  Even though I was numb, I am certain I tensed up every nerve in my body as he sawed and ripped them out, one by one. 

For a week, I’ve had mostly Jello, pudding, yogurt, tomato soup, and spaghettios.  I tried my hand at egg salad (yum!) sandwiches and those were pretty soft and easy.  Now, today, I’m going to try something a bit meatier…I miss meat.  Lets hope it goes well. 

At least I have my syringe.

2014 Leukemia Research Foundation Jim Gibbons Memorial 5K run/ 3K fun walk

Dear Friends and Family,

As many of you know, I have spent the last 16 months fighting a rare form of leukemia, Acute Promyleocytic Leukemia.  When my leukemia was discovered, I had flu like symptoms and large bruises that appeared out of nowhere.  Little did I know, I had days to live without immediate treatment.  I am blessed to say I am in remission, although I am still undergoing maintenance chemotherapy drugs until next October.  It has been a long battle, but I couldn't have done it without the support of my colleagues, friends and family.  Thank you for all your prayers along the way!

I am reaching out to you today asking for your support.  I will be walking as a survivor in the Leukemia Research Foundation's Jim Gibbons 5k run/3k walk in Chicago on June 12. I am walking the 3K in memory and honor of a fellow leukemia patient and friend I made while being treated at Rush, Keith Johns.

Keith was diagnosed the same time as me, Feb 2013.  We were both on the same floor at Rush, and we became friends during our initial month long stay.  Keith was diagnosed with AML (another form of leukemia) and needed a bone marrow transplant.  Keith and I went through our battles together.  We both had turned our rooms into mini studio-style apartments.  His room was plastered with family pictures and goodies from home, as was mine.  We lost our hair at the same time.  We experienced the same sore throats and upset stomachs from our chemo, lovingly termed by the nurses as "the red death".  Yet, he always smiled and waved to everyone in the other rooms.  He was always positive.   Keith did receive his transplant, after lots of chemo, during the summer.  I was lucky enough to also be receiving a round of chemo at the same time as his transplant, so I got to spend a couple more days visiting my friend.  Unfortunately, he had some
complications a few months later and passed away November 28. The news of his passing was incredibly heartbreaking for me.

More than anything, I want to honor my friend by participating in this walk.  The Leukemia Research Foundation is a non-profit that actually provides financial assistance to patients who cannot afford their treatments and/or medications.  It also funds research grants to help find better treatments for all blood cancers.  Last year, LRF provided over $500,000 in grants for research to help cure this devastating disease.  My specific leukemia was a death sentence 20 years ago, but because of groundbreaking research, it now has a 90% survival rate.

Below is a link to my fundraising page.  Please check it out and read my cancer story.  I am reaching out to you today asking for your donation.  I originally set a goal to raise a mere $200, but then I realized I could do better.  Please help me blow the roof on that silly $200!  Your donation will help fund leukemia research and help pay another patient's medical bills.  No donation is too small.  If you can't donate, I would love it if you could share my fundraising page with others, or better yet, join me in the walk! 

http://gibbons5k.racepartner.com/Jim-Gibbons-5K-2014/lisalee

Everyone is touched by cancer.  Everyone.  Whether its an aunt, mother, father, grandparent, friend or coworker...we all know someone that has experienced what I call "Warrior Training".  Not all of us are lucky enough to hear the word CURED.  Leukemia is a cancer that has a general survival rate of about 50%.  50% is TOO LOW!  We can't up that number without research!  I am one of the lucky ones, I heard REMISSION.  I WILL hear CURED in 4 years. 

I am walking in memory of Keith.  Please make your donation in memory and honor of your loved ones who have fought cancer.

Thank you!  Please share on twitter/facebook/linkedin

Dealing with Weight Gain during Remission from APL while on ATRA/Tretenoin

When I was first diagnosed with cancer, I was immediately subjected to tons of antibiotics, medications, and chemotherapy.  I lost a lot of weight.  I traveled everywhere with Zofran, my new best friend.  I lost 28 pounds in five weeks.  I was expecting the weight loss, everyone I knew that suffered from cancer (of any type) would look so sickly and swimming in their skin at some point. 

 

Now, I’m in remission and undergoing maintenance therapy.  I take lots of pills daily for the first year of remission.  Ah, I just love that word: remission.  Well, I have packed on the pounds.  I gained back all I lost and an additional 30 lbs.  I weight 180 today.  I have weighed 180 (give or take 5-10 lbs) since November.  I started my maintenance therapy in October.  Yes, that last 20 lbs I gained happened in ONE MONTH! 

 

I am trying to be more active.  Sure, I am still fatigued.  I am tired all the damn time.  I get tired at the drop of a hat and then take a 2 hour nap like its nothing.  I wake around 5 pm and decide to take a shower and start my day.  And then there are moments like this, when I’m up at 4 am and can’t fall back asleep (and I wonder why?) 

 

My new favorite apps are Runkeeper and MyFitnessPal.  I have them on my phone and use them all the time.  I log my food in a diary that tracks my calories in MyFitnessPal.  Runkeeper tracks how far I walked (like a gps & pedometer combined) and calculates calories burned based on my distance, time, and weight.  I should be losing weight.  Should be…yet I’m not.  I’ve been on these since December, and I have noticed one trend:  as long as I’m active and not eating just junk food, I lose weight on my non-ATRA weeks.  ATRA is my main maintenance drug.  I take 8 pills each day every other week.  So, last week I was not taking ATRA.  I lost 5 lbs by Sunday.  This week is an ATRA week.  I am back at 180 as of yesterday.  Thank goodness today is Saturday.  ATRA is almost over.  Next week, the 5-10 lbs will drop and I will go through the process again. 

 

Is anyone else having taking meds and having problems losing weight?  I am constantly focusing on the weight gain, and I know I shouldn’t.  It’s hard, though.  It’s hard to look at myself in the mirror and be okay with how I look.  I am uncomfortable being this big.  I use to average 150 lbs.  In my best shape, I would be 135…and looking pretty good with my curves.  It depresses me.  I try, but then I also let food get the best of me.  It feels wonderful to taste food, and it is amazing to appreciate food and something as simple as flavor again. 

The nightmares continue

I assume anyone with a tragic illness, something brought on suddenly, can relate to today's story.


I still have nightmares. 


A lot.


I sometimes wake up in the night, covered in sweat, like last night, confused and still separating parts of my dream from reality.  I thought I was wrapped in cold, wet lettuce leaves.  I was sweating in blankets in my bed, but it was that hazy moment when your dreams and waking up combine.  I was reading a magazine, Organic Gardening, last night, right before bed.  Last year at this time, I couldn't even leave the house.  I was neutropenic.  I couldn't eat raw food.  I couldn't garden last summer. 


I am hell-bent on gardening this year.  But, the fears of eating raw food are always with me.  The fear of listeria, a bacteria that doesn't go away from washing and rinsing your food alone.  Its obviously a big fear that still comes out in my dreams.  I'm still scared if I go back to work while on my chemo pills I will get sick again, and this time even worse than the last time.


Its hard facing our fears.  Its hard to live again, even though we so desperately need and want it.  I feel like a little child scared to get in the water.  I want to play, but I'm scared to learn to swim.


Any thoughts?  Stories about your fears with cancer?  Please share!