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!

Love for Lorin | Medical Expenses - YouCaring.com

Here is Lorin, a teenager fighting a rare type of sarcoma (cancer). 




Please visit his family's support page and help if you can.  Anyone that has gone through a terrible illness (like cancer) knows the ridiculously high costs involved (even if you have insurance).  Even $10 and a note of support will help. 




Individually, it doesn't take much to collectively make a huge difference in someone's life. 

Support Lorin and family if you can.  If you can't, please pass on and share the link to the fundraising page!










Love for Lorin | Medical Expenses - YouCaring.com

A child's prediction

I just remembered a thought I had when I was a little girl.  I think I was in the fourth or fifth grade, and both of my grandfathers had already died from different cancers.  My aunt was battling cancer, as well. 
I remember noticing one day that both my grandfathers had blue eyes.  My aunt also had blue eyes.  I had blue eyes.  No one else in our family had blue eyes...that I could think of.  I remember really investigating this, I think it was a holiday dinner at grandmas, where everyone, all my cousins and aunts and uncles were.  I remember looking at everyone.  Checking out their eyes.


It sounds funny, but I was serious.  I can't believe I forgot all about this.  I was convinced there was a link between cancer and blue eyes.  I also was convinced I was going to get cancer, because it ran in my family (those who had blue eyes). 

One Year Anniversary...oh how my life has changed!

One year ago today, I went to Urgent Care thinking I had the flu and was a bit anemic.  Instead, I was informed (bluntly) I had leukemia with only days to live, and an ambulance rushed me to a hospital in Chicago.  I spent 5 weeks in the same hospital room.  I had my gallbladder removed a couple days later, a hickman port installed in my chest with three tubes hanging out of it.  I lived attached to an IV that went with me everywhere.  I lost my hair.  I got used to vomiting (often).  I went from a probiotic and multivitamin every morning to over 10 pills with breakfast alone.  I experienced chemotherapy (a lot of it).  I found out what health insurance really is and what they cover.  I learned to fight for myself.  I learned that the drug that saves me costs $5,000 out of pocket each month.  Yep.  I learned a lot.


But...

Today is the anniversary I got my life back.  I almost died, but the wonderful doctors and amazing nursing staff saved my life.  This past year has been a gift.  I promised God one year ago today that I would make a difference in this world, and I wasn't ready to die.  I hope God knows I am trying to move in the right direction.  I've walked and raised money for the Humane Society.  I've walked for the Leukemia and Lymphoma Society.  I've made cookies for others in chemo.   I've made cookies for a bake sale to help another person overwhelmed by medical issues and bills.  I've tried to be more helpful.  I care more about others than I ever did before.




This is only the beginning. 


I am happy to wake up each and every morning.  I love life and can't wait to get back to living!  I am committed to continue helping others through their own cancer story, as they heal so they can get back to living.


I am ever so grateful.