Done with 2 of my chemo pills!

I have been on Maintenance chemo since October 2013.  What's maintenance chemo?  Well, for me, with my specific leukemia, I take a variety of pills everyday, including the big three: mercaptapurine, methotrexate, and ATRA (tretenoin).  I also take a few other things, but those are to combat some of the side effects of the big three. 
Yesterday, I was told by one of my NPs that I could stop the methotrexate and mercap. I also will stop my ATRA pills on Sunday, which is awesome!  I am so happy to get my body back into shape. 
I say back into shape for a few reasons.  Its very hard to lose weight on these meds.  I have steadily gained weight during this past year, and now its almost over.  I've gone to a podiatrist to treat plantar fasciitis and overpronation due to rapid weight gain/loss and balance issues from being neutropenic so many times over the past 2 years.  I wake up nauseated every morning around 4 am.  Some days I am not hungry at all and other days I can't stop eating.  Oh, and the headaches are awful.   So, yes, I can't wait to get my body back.  I want my immune system and my blood to normalize.  I want my weight to normalize.  I want my muscles to come back full force (just in time for the apocalypse).


Its very exciting.


And in one week, I will be at the hospital getting yet another bone marrow biopsy.  If this is clean, I will be in survivorship officially!

Research IT!

Yes, the IT is all caps-- if you have a problem, stop reading right now.  I use all caps sometimes.


Lol, that was a remark geared to someone that thought a comment I left on a support group was rude because I capped a few words, not even in order.  I put all caps on a few words (separated by other words) in a comment in regards to chemotherapy.  I was trying to highlight some terminology, and it was taken as I was being rude and "yelling".  I don't yell in all caps. 


I elongate when I really am mad...UUUGGGHHHH!!! (and use exclamation marks!)


I guess this rant is more about the importance of research.  Do you have an illness, like cancer?  Maybe even leukemia or APL?  Here's the thing:  Please, for the love of yourself and your life, please oh please research your illness or disease.


Its one thing to join a support group on facebook or on a cancer website, but its another to take what another patient or family member to another patient says as truth.  And, from what university did they get their medical degree from?  Exactly. 


I've seen people asking a support group what C-diff is.  ASK your DOCTOR!  (Yep, did it on purpose there.)  In case you don't know what C-diff is, you have not experienced the outbreak that is the most disgusting side effect to chemo or suppressed immune systems have the pleasure and the curse to have.  Yes, look it up.  Google and Wikipedia are great.


When someone is told they have cancer...many thoughts go through their heads.  For me, I was told in a very cold way and then rushed in an ambulance to another hospital.  I was lucky enough to have a nurse explain to me what was happening.  The following day, I met lots of doctors.  I was bombarded with tons of information and questions and it was very dizzying.  By the time my boyfriend brought me my laptop, I had printouts, but I also still wanted to look things up on the interweb myself.  I wanted to see other stories, hope for happy endings, read about other experiences like what I was about to embark.  I wanted answers and confirmations. 


Guess what?  I got them.  I agreed with everything my doctors told me.  I questioned (and still ask questions) when I don't understand something fully.  Maybe my inner nerd that loves science and biology really got a chance to shine through and help ease my nerves, but honestly, I can't imagine not asking questions and just saying OKAY (totally not yelling).  I also can't imagine asking someone who I don't even know what they do for a living what C. diff is--- that's what the hospital staff is for.  That's what your doctor is for.  And, when you have a fever and don't feel well, well they do want to know.  Do your meds make you puke?  Tell them.  Don't tell another patient...they can't do anything about that.  Tell the magicians who are trying to save your life, because the price of magic is plenty, and some of it isn't necessary.  Does Compazine make you feel funny?  Tell your oncologist.  They can easily write a script for Zofran if you aren't allergic. 


Don't rely on others for medical advice-- rely on them for moral support. 


I know its been awhile since I posted.  I should give an update, but I really needed to get this out. 
Thank you.
xoxo
lisa

Update on me

Yesterday, I had my checkup with my main oncologist.  This is my final month of maintenance chemo!  I finish up mid October and am so excited!  Finally, my body will have a chance after 18 months to adjust to no meds.  Well, I still will have to take my b12 and folic acid, but hey, I can do that.  That's nothing!  I'll take a month off meds and chemo and then have yet another bone marrow biopsy.  That test will be the big kicker--- let the docs know how my body is doing, and if there is any sign of the genes switching back to cancer or if I'm doing well! 


Oh my gosh, I'm so excited.  I'm looking forward to losing some of this weight, traveling again, and regaining energy.  I know I have a lot of things I want and I know they will take time, but its been a long time coming.

Gift Bags: The Start of Lisa's Cancer Kickers!

I am taking a cue from Emma Rose, A Patient Helping Patients and my dear friend, Abby, and looking to brighten the day of some leukemia patients at Rush University in Chicago.






I am being treated at Rush.  Although I am (hopefully) almost done with my maintenance chemo, I want to help others that are dealing with what I dealt with last year...staying at the hospital for weeks.  Leukemia and other blood cancer patients tend to have longer hospital stays, because their cancers are treated differently.  They want to wipe out all your immune system and make you weak, nauseous, and tired.  Wait, that sounds awful!  Well, it is and it isn't.  Its good to get rid of all those bad cancer cells, and its even better to have 24 hour care.  It just sucks being in lock down and feeling awful because your body isn't really making blood (your life force). 


So, when I was at Rush getting my induction (first) chemo, I was there for 5 weeks.  My friend, Abby, mailed me a box filled with goodies.  I got a ton of little things that made me smile, laugh, and came in handy.  I think its time to pay it forward and surprise some people that are having a rough time have a bit of a better day.


Would you like to help?  I am looking for small things (new, unwrapped) that can help a cancer patient and maybe give them something to do.


Suggested items I need:

• Kleenex or Puffs cubes (the hospital has tissues, but they are hard and scratchy)
• Lip Balms, like Aquaphor and Neutrogena, for very dry and sensitive chapped lips
• puzzle books, like crosswords, Sudoku, word finds
• iTunes and amazon (or kindle) gift cards. $5-$20 range.  Patients can use to download games, apps and books onto their phone or tablets.
• yarn for crochet and knitting
• gum
• hard candies (lemon heads are the best)
• soft travel sized fleece blankets
• memo books, pens.
• hand weights (to keep the muscles from atrophying, like 1-2 lb.)
• inspirational books, like chicken soup for the soul
• ear buds for listening to music on their phones/tablets/laptops
• long distance phone cards, so they can use the landlines and not use up all their cell minutes
• chocolate bars-- plain milk chocolate.  Chocolate anything is a commodity in the hospital.
• magazines (entertainment, travel, health, fishing, sports, news)
• little knick knacks that motivate or inspire

VIEW my Amazon Wishlist

If you can help and would like to donate some items, please email me at greenappleworks@yahoo.com 

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!

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.

How can I make a difference?

I ponder that  question all the time.  I am always searching for a way to make my mark on the world.  What's wrong with me?


Yesterday, I had this thought about making a regular thing of delivering cookies to the chemo bar.   That's all.  I just want to make someone's day, and I know my cookies are good and can put a smile on someone's face.  Plus, it gives me an excuse to go visit and talk to everyone. But, then, I googled, "Cancer for Cookies" and "cookies for chemo".  I looked up other non-profits to see if there was anything local or if that name was available.  I suddenly in my head formed my own non-profit and visualized me baking cookies with others and delivering them all over the area...like a growing superstar of a corporation, holding fundraisers, recruiting volunteers, even having a silent auction!  I can't just be simple. 


Then, this morning, it kinda became clear, as I was in the middle state where you are just waking up, but still remember what you dreamt about five minutes earlier.  It dawned on me, that its not about making your mark in the world.  Its about helping.  Do I want to be "known" or "popular" or do I want to help another?  High school and popularity has been over with for twenty years, Lisa, hasn't it?  I wasn't popular then, but I wanted it so badly.  I think that craving never left.  I'm scared that craving never left and that's why I do what I do half the time. 


I realized I need to put this in perspective:
I don't want any awards and I'm not looking for praise for making cookies.
I really like to bake.
I like to feel like I am doing good and helping someone.
I am going through cancer, and I know what chemo feels like and what it does to you.
I can relate.
It makes me feel better to bake.
My cookies are pretty good.
Cookies are pretty inexpensive and well appreciated when you are in chemo for 3-6 hours at a time.


So, I just re-wired my brain.  Just now.  Yes, Lisa, you can make a difference and help others.  You will feel awesome about yourself, just by seeing the smiles of the other cancer patients when you drop off cookies.  Its not about the recognition.


See, that's it:  Its not about the recognition.  I think a lot of people do things for the recognition.  A charity run or walk...you get this tshirt...a show off item, so you can get recognized.  I raised money for jump rope for heart when I was younger-- I did it so I could hang out with my friends after school and get neat (krappy) prizes.  I didn't do it to help those with heart disease or heart research.  Nowadays, I donate and do things for the humane society because I firmly believe they are a good organization.  Frank came from there, and I used to volunteer there (years ago before I got frank).  Now, I try to drop off treats, food, blankets, and paper towels and such when there is a good sale to try to help them out when I can.  I don't do it for the recognition.  I do it because I love the animals and I hate seeing these dogs and cats homeless and in cages.  I do it because I want those animals to have a good treat or toy or blankie all their own until they get a great home.


We all have something we care deeply about.  Everyone can make a difference in their own way.  Isn't that what social responsibility is?  Not just recycling and upcycling and being environmentally conscious, but also being morally uplifting?  I don't want to call it anything other than that.  Morally uplifting. 

Zach Sobiech: Clouds

Shortly after I came home from my initial stay at the hospital for my cancer, did I run into a youtube video (as I did nothing but sleep and lay around when I was neutropenic) from Soul Pancake about Zach Sobiech. 
Here is a teenage boy, full of life, while at the same time dying from cancer.  I watch this video all the time.  I wanted to share it on my blog for those that haven't seen it.  The song, "Clouds", was written by Zach and his friend and it is beautiful and comes into my head now and then still.
I can't do his story any justice except to mention it has inspired me to survive and be thankful beyond words. 
Enjoy!

Remember, love is all you need!

Toxic Biology Indiegogo campaign #toxicbiology #indiegogo

This morning, I woke to a comment on google/blogger that peaked my interest. 


http://www.indiegogo.com/projects/toxic-biology




I don't want to say I'm endorsing the campaign.  However, I watched it and realized something:  Everyone who has cancer has a story.  Each story is different.


My cancer kills 7-14 days after it begins.  Kills.  There is no time to think about second opinions.  No time to think about going to work the next day.  No time to research alternative medicines.  People before the 1980s who had APL died.  They died quickly thinking they had the flu or miserable, hooked up to tubes inserting chemo that doctors knew would not work, instead just buy a small window of time.

New Year-- Getting organized with the paperwork

As a cancer patient, I get tons of mail.  I means TONS of mail...mostly bills, claim receipts from the insurance company, just lots of stuff.  It usually piles on the table until I move it to the desk and then piles there until my boyfriend can't take it anymore. 


With a new year, its time to get it all organized!
Here's what I'm doing to organize this weekend:

Happy Friday! Happy Warmer Temps and fog and snow and rain and such...

Well, Its been a few days and I am feeling better. 
I still have sniffles, but I am not going through a box of Kleenex a day.  With those sniffles, there is some coughing.  I don't mind the coughing, its rare, only when I get up after sitting or laying down for a long time.  That, my friends, is what post nasal drip is.  I never knew what post nasal drip meant until this year, funny, eh?  I've had it with colds, but never knew the name of it!  I have all this newfound medical knowledge!  Maybe I should switch careers and go into nursing.

So I have been sick...

I know its been awhile, but I've been sick.  Neil and I went on a small trip to Vegas (oh how I love Vegas), and I came home with a superbug of some sorts.  Well, I'm calling it a super bug anyways.  My body just couldn't shake it, I felt better after a few days and then it hit me again on Christmas Eve.  I went and spent my Christmas at the Emergency Room by my house.