Two Years Old!

Two years ago today, I went to urgent care not feeling well and full of bruises.  While waiting for blood work hours later, the doctor told me I had to go to the hospital, they would have a room waiting for me, there was something wrong with my blood.  He wouldn't tell me what, just that I had to go to the hospital.  From there, a doctor walked into my room to tell me I have leukemia and an ambulance was coming to take me to another hospital, in Chicago.  They couldn't help me locally.


I cried instantly.  My boyfriend cried instantly.  I thought I was going to die that night.  I had never been in a hospital as a patient before that day.  Now, I walk around them like I own the place! 


Two years ago I was almost dead.  My platelets were so low, I would bruise up when they took my blood pressure or a sample of blood.  I think they were 11.  A number like 250 is more normal, fyi.  Platelets are the part of your blood that help you scab up.  So, I could have cut myself and bled to death at some point if I wasn't in the hospital.  I would get blood, platelets and other blood products regularly, because my body stopped making them.  In fact, my body didn't want to make anything but white blood cells.  I started getting fevers, night sweats, and all the drugs and chemo didn't help me feel better, either.  However, they saved my life.  APL is not going to get the best of me.


That day, my life started over.  I remember calling one of my oldest friends, Cheryl.  Today is also her birthday, but that day I don't remember if I even said "happy birthday" to her.  I remember talking to her on the phone, maybe the next day or so after I found out.  It was the first time I told someone on the phone I had cancer, I think.  It was hard to talk without crying.  I don't remember much of that conversation.  I was locked in the hospital at Rush,  which was over an hour away from all my family, so there were many times in that first 5 week stay I was super lonely, scared, and not right.  Facebook, Skype, and some long distance cards from Big Daddy became a saving grace.  I did not get the best cell signal, so the long distance cards made talking easy, not worrying about going over my minutes.


I realized how much my boyfriend (Big Daddy) loves me.  He already told me Happy Anniversary today, and it truly is a reason to be happy.  He visited me almost every day.  He bought and brought me things like my favorite ginger ale, lip balms, frozen pizzas, candy, clothes (oh he would pick up my pajamas and my blanket, wash them and bring them back the next day).  He got me about 7 pairs of pajamas that were buttoned-front so I could easily wear them with all my ports/IV.  He would give me sponge baths when I wasn't allowed to shower.  He would walk me every morning so I wouldn't lose too much muscle.  He also brought me a greek yogurt parfait each morning, too, so we could eat breakfast together.  I had just moved in with Big Daddy two months before I got sick. And then, life changed instantly.  He had to go through my stuff and figure out all my life things-- where I keep my money, passwords, bills, my po box, everything, while I was suck in the hospital. 


My brother came and sat with me every night while I got my chemo in the hospital.  He one time came in and I wasn't feeling well, and he had to see the doctors rush in and take chest x-rays, blood work, and see me really sick.  I'll never forget that night.  Another night he brought me Pizza Hut and we ate while I got my chemo.  It was right before I lost the taste buds in my mouth--that lasted over a month!


I just can't believe I am finally here.  Sure, I still have some issues.  But, I know they will get worked out over time.  My skins still not right.  My hormones are out of whack and trying to decide if I'm 38 or 68.  My body still aches in certain places.  However...at the same time I just know it will be okay.


This has been a long journey, and I am thankful for all the prayers and well wishes.  I know most of you know my story.  Leukemia sucks.  I am so happy to be hear.  That night, two years ago, I promised God I would make a difference if I was given more time.  I cried, and I told him I was not ready to die.  I mean that.  Still not ready, and I am working hard to make that difference. 


Leukemia doesn't define me, but it has definitely shaped my life since my diagnosis.  I can't ignore it, and I don't want to.  I want to help others who are fighting like I did.  Tomorrow, I see my local hematologist, and I can't wait to deliver some lemon pound cake to the patients.  Its small...making cookies and such for the patients at Dr. Farhat's office.  The nurses are nice, they love it, and everyone seems in a good mood.  Besides, it gives me an excuse to stay and talk to others getting their chemos.  Most of them have different cancers.  Doesn't matter.  Chemo can be boring and sometimes its helpful to have someone to talk to that has walked the walk and can relate.  I hope God counts this in my efforts, because I love doing it so much.  It makes me so happy to deliver cookies to that office.  It makes me so happy to talk to other cancer patients.  It heals me.


Have a blessed day, and thank you for reading this message!
Lisa

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

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. 

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:

4th Bone Marrow Biopsy Done! Hickman removed!

Lots of updates for you today!
Last week, my Hickman catheter site was bleeding a bit.  After a trip to the cancer clinic at Rush in Chicago, my doctor determined it needed to come out.  Don't worry, the culture sample they took from the wound came out negative, so it was most likely just inflamed and irritated.  That makes sense, I clean it and have to change the dressing at least once a week, sometimes more if the dressing starts to come off.
So, this Tuesday, my catheter was removed and now I have a big bandage over the hole (yes, there is a hole in my chest where the tube came out) and some stiches where they opened me up to cut out the catheter.  Its a bit sore, but its a great thing to not need this tube anymore!!  I was awake for the entire procedure.  The surgeon gave me a few shots of local anesthesia, and that burned a bit.  They cleaned the area, and he made an incision about an inch above the exit site.  Then, he removed the catheter from the vein and cut away the tissue that was growing/healing/attached to the tube, cut the tube out, and removed the remaining part from the hole in my chest.  Then, he sewed me up, applied some glue, and bandaged me up.  I have to keep the bandage on for one week, then I can take it off and just put a regular Band-Aid on until the hole heals properly.  Amazing!  I'm a bit sore, but its awesome!
Yesterday, however, was my monthly check up at the clinic.  Since I have completed the recommended course of chemotherapy, I had my 4th bone marrow biopsy yesterday.  I see doc again in 1 1/2 weeks to discuss the results, and hopefully start maintenance therapy.  I felt a bit woozy after the biopsy, but I think I will write about that in another post, I am sure there are people that want to know a bit more what happens (from the patients view) with a bone marrow biopsy.  Regardless, I was a bit sore when the local wore off, and my brain was a bit fuzzy, they did numb me up pretty good.  So, my parents took me home yesterday, got me some fried chicken and I slept most of the night.
I am so excited, praying I can soon resume my normal life, if I remember what normal was 9 months ago, when this all started.  I am anxious, but also worried.  I was prescribed physical therapy for my hip pain yesterday, so today I have to call around and get an appointment for an evaluation from a physical therapist in my area.  The hip pain has been around since my second to last chemo cycle, around August.  Its only one hip, and I can't tell if its a nerve, muscle, or joint pain.  Its very odd.  It doesn't hurt to walk, though, and that's about the extent of exercise I am currently allowed.  Under no circumstances am I to go jogging or do anything like aerobics or Zumba (oh I love zumba) until I see the physical therapist.  My doctors nurse told me yesterday that even though my numbers look good, I have been neutropenic on and off since February.  I have been restricted in exercise and mostly sleeping and tired this entire time, so my body will take time to recover and it will be a process.  I am not looking forward to this, but I am looking forward to healing even more.

Have a great day,
L

Keeping Positive with Cancer

After 5 weeks in the hospital, I finally was able to go home.  One month later, I have returned for one week (5 days) of chemotherapy inpatient.  After this intial week, I will be continuing with chemo 5 days /week for 10 weeks.  It will be tough.  It feels like it will last forever, and I just want this over with...but I know I need to stay positive.

Keeping a positive attitude is of the utmost importance in my mind.  I know that when I try to stay positive, my family and friends say I sound better and look better when they visit or we talk on the phone.  When you put it out there that you are in this to get better...you feel better...and I think your body starts to improve.  Sure, chemo is not exactly my idea of fun.  You don't really feel it, it doesn't hurt, but your body reacts to it...with time.  During my first round of chemo, (induction), I would get an upset stomach in the middle of the night that would last until 10 am.  Even with anti nausea medicine, it was hard to control.  Of course, everyone is different.  I hated the side effects, and I am not looking forward to 10 weeks of side effects.  I am, however, looking forward to getting better.
Cancer will not get the best of me...I will get better and get better as quick as possible.