Skin cancer from tattoo ink? Hot in the news

When I was 20 years old, I foolishly got a tattoo.  Granted, it's small in size, about one square inch that I firmly believed in at that time.  I still do, but I realized in the past 20 years that I didn't need it to define me.  I think I spent $20 for this small tattoo, placed on my foot.  At least I was smart enough to place it wear it would not be seen 98% of the time.  Most people would not know Or guess I had a tattoo...especially for that long. Half my life.  Wow.  But, I can't imagine how I will feel 20 more years down the road (if I live that long).  God only knows.

This week, I saw some news about possible risks and links from tattoo inks and skin cancer, or melanomas.  So, as always, I wanted more news. Am I a researcher? No.  But, I did find a few articles online, including the original one that scared me--


The Original Article that scared me (Independent.co.uk)

http://www.foxnews.com/health/2016/07/26/tattoo-ink-may-be-toxic-study-suggests.html

Article on Washington Post (older article!)

https://cjon.ons.org/sites/default/files/D27117T693777KV0_first.pdf

https://thetruthaboutcancer.com/are-tattoos-safe-cancer-risk/

Great Article from Skincancer.org about tattoo ink/possible carcinogens

If you are now more confused, well, so am I.  Does it make sense that a poorly made, cheap ink that will stay in my skin forever may cause cancer of some type?  Well, putting it that way...yes, it does make sense.  Have people been getting tattoos for centuries?  Yes, they have.  But, the general life expectancy of a human today is higher than it was 100 years ago.  Albeit, it might be slightly higher in comparison, but it's still higher.  Plus, civilized populations, like us generally have a higher expectancy than 3rd world countries.  So, here's my thinking: many third world countries and tribal groups is what I think about when it comes to tattoos a long time ago, and they used natural ingredients from plants and such.  I will say I'm not sure if their inks are safer or different than pigmented inks we use here in the states...I'm sure they are manufactured differently and we have many colors of the rainbow, some look almost unnatural.  I could be way off, but their life expectancy is less...and do we know why?  Who knows?
I may be more confused now, but I'm gathering that when it comes to cancer, we may have herietary tendencies, in our genes, fluke accidents, like I believe mine was, or we expose and put stuff into our bodies that do its toll.  Like using cheap gas or premium gas in your car.  Does it truly make it last longer? Does it prevent it from having issues or breaking down?  The only way to truly know that answer is to have 2 exactly the same cars drive in the same places, get the same work done to them, and use one with unleaded and one super plus gasoline, and who can do that?
It's late, I'm tired, I've been up thinking about this for a few hours.  Ultimately, I fear what we do to our bodies is cumulative, and I wish my stupid self took note of that a long time ago.
We can't go back in time, but we can try our best today.

Make it count, don't worry too much, but live your life fully.

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. 

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!

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:

Before I forget...dealing with Chemo Brain

I woke up this morning feverishly trying to remember what I had to do, before I got out of bed to see what I had written down.  Mix that with my new ritual of morning nausea (yep...every morning) and its quite a show, I'm sure.

The nurses and doctors refer to it cutely as Chemo Brain.  Its a cognitive disorder that can occur after chemo...forgetfulness, memory loss, brain damage...however you want to spin it, it sucks. 

A few weeks ago, I got lost going home from an area that I shouldn't have.  Plus, I'm a realtor (well, before cancer), so I really know my way around the area.  I was on a main road about twenty minutes from my house.  I literally had to stay on that main road and turn left on another road to get to my subdivision.  Somewhere, I messed up and ended up in another town far, far away before I realized it.  I didn't know where I turned, what I did, I was just driving and there we go...I either lost track of what I was doing, forgot I was going home, or forgot my way.  You see, I can't even tell you what caused me to end up in another town... I can't remember and it just happened.  That's the best way I can describe it, it just happened. 

Chemo Brain is very serious.  One of my nurses told me it could take a couple years to regain what I have lost, but since I am younger, I have a better shot of getting it back.  Getting back my brain!!!  Its crazy to know that I am stupid, but I am alive. 

To keep active and exercise my brain and cognitive functions, I have been working on puzzles, jigsaw and crossword, Sudoku, crocheting, working on organizing my paperwork and coupons, watching wheel of fortune, and trying to watch more informative shows.  Reading, baking, anything that makes me think.  Everyone I talk to agrees that those things help.  However, its incredibly frustrating (for me and those I piss off from asking the same question 20 times). 

So, until my mind is better than it was, I won't be happy.  I lose track of time constantly, and I know its partly because of the chemo brain.  I get up and the next thing I know is the day has gone by...its 5 pm and time to start dinner.  It sucks.  But I am alive.  Don't get me wrong, I am very grateful to be alive.  I just want my mind back, too.  That reminds me, I need to go to the university and talk to my professor, to see about going back to school once I get my mind back into action.   I had to take a medical leave when I was diagnosed.  Would be nice to get back, but I don't want to jump back too soon.

Have you experienced this?  Do you have a story to tell or ideas on how to keep your mind active?  Please share!!

Have a great day,
L

THE PHARMACIST- YOUR NEW BFF

I have two pharmacies I frequent nowadays.  The pharmacy at my hospital, and then the Walgreens right by my house.  In fact, I know both pharmacists pretty well.  You should get to know your pharmacist, too. 

My pharmacist at Walgreens saw me a few times a week most of the summer.  I was getting chemo treatments M-F, everyday, and depending on how I felt or what I needed, I was in there.  Sometimes I needed potassium pills, sometimes I needed more tape to cover my catheter when I showered, sometimes, I just needed to walk around and buy a candy bar before heading to chemo.  Whatever it was, they saw me pretty often. Still do, in fact.  I go there weekly...even just for candy if I am in the mood.
My pharmacist at Walgreens asked me one day what type of cancer I had.  I told him, APL, which is a subtype of AML, he told me his wife was battling AML, too.  He has become a rock for me, whether he knows it or not.  He always asks how I am doing, which is nice.  We have shared stories of some drugs that his wife and I have both taken (and their super gross side effects).  I have gained a trust for him over the course of this year, and I depend on his opinion and expertise.
Get to know your pharmacist.  Even if you get some drugs at one place and some drugs at another (like I do), bring all the meds in and let them have a record of what you are taking, so they can let you know of interactions or side effects.  Even though I am in remission, I take lots of pills...multiple times a day.  I will for this next year, and I need to worry every time someone prescribes me an antibiotic or any other med for that matter.  I need to know this won't cause an issue with my methotrexate or my tretinoin or anything else I take.  The pharmacist can help you with this.  To me, my pharmacist feels like extra insurance.  He sees what I am taking and can tell me if its ok to take all these meds together or not.  He can also let me know what side effects I can expect, and maybe hints about taking the meds (with food, before bed, without food, etc).  The pharmacist is there for you.  Take advantage of him/her... let them help you!

Must Have for Cancer Patients: Baby Wipes

You might think I am crazy, but trust me, as a cancer patient, wipes are a must.
Cancer patients are treated with tons of different meds.  These medications can all interact with your digestive system in different ways.  A 'normal' bowel movement quickly becomes a thing of the past.  Might sound gross, but this is easy talk for most cancer patients.  Due to our immune systems, chemotherapy, and everything else, the last thing the doctors and nurses want us to do is strain ourselves when we go to the bathroom.  They also want us to (obviously) keep clean.  Baby wipes work for moms cleaning babies, and they work for cancer patients who need a little help. 

If you experience hemorrhoids, ask your doctor about medication or medicated pads and wipes.  When I am noticing a little blood, I am most scared about infection of the area that is bleeding.  Wipes help this better than toilet paper.  I rarely even use toilet paper anymore.  Of course, I just started maintenance therapy, and those medications make me go a lot and often.  Just don't flush them! 
I prefer the thick unscented wipes.  Walgreens makes a store brand wipe that is wonderful.  The thick ones are worth it as an adult, too!

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

Chemo Helpers

My body has gone awry from the entire experience of cancer, including each chemo treatment.  I just wanted to share a few things I found helpful or am trying for anyone going through similar problems.

*Kindly remember, I am not a doctor and I am not giving medical advice. 

• Yogurt has become my friend.  It kinda already was, but now I try to remember to have yogurt everyday.  Read on some of the benefits to the cancer patient here: AboutYogurt.com - National Yogurt Association
• Keep a routine.  My morning routine includes brushing my teeth, eating breakfast and taking my pills.  Then I rest and watch tv/check emails.  After that, I take a shower (and there is a whole routine for that).  It makes the day go faster, and it helps me maintain some normalcy. Routines help keep us from forgetting things, like pills, dressing changes, etc.  
• Soft foods are great.  I don't know if all cancers have to look out for mouth sores, but with APL, the doctors were always checking.  When my counts are down, I am prone to more mouth sores.  To avoid this issue, we keep soft foods stocked always.  Pudding cups, jello, liver sausage, soft bread, soft snack cakes, yogurt, mac and cheese, etc.  Most of these also help with nausea.
• Know where your anti nausea pills are at all times.  Whether you take Compazine, Zofran, or another med, you need to know where there are because nausea will strike at any time.  Its good to have the other adults in the house know where they are, too, just in case you don't feel well enough to get up the stairs or walk down the hall.
• Lotions, Lotions, Lotions.  Yes, I have an arsenal of lotions.  I have to integrate them into my routine.  Chapped/dry or peeling skin, try Eucerin Aquaphor.  Lips, try Neosporin overnight lip cream.  Down there issues, take home the cream from the hospital.  Peeling feet and hands (PPE) try Eucerin Aquaphor (the thick one).
• Staying hydrated- unless you are on liquid restrictions, they usually want you to drink a lot.  If you like soda (pop), but are trying to cut down, try mixing Pellegrino sparkling mineral water with fruit juice or Gatorade.  I like orange gatorade mixed with Pellegrino myself.
• Rest when you are tired.  There have been days I slept 10 hours straight.  Hey, you are sick, and this is how your body heals.
• Walking is important.  I'm finding out right now stretching is just as important.  Be careful if you have a central line, like I do.  Amazon Prime has a few beginner yoga videos you can stream from your computer or tablet and try to keep your muscles and joints from turning to mush.  Don't overdo it, though.  Talk to your doctor about exercise, too.
• Don't be afraid to wear a mask in public if your counts are lower than normal.  I wear a mask everywhere (when my counts are high enough to leave the house).  I go to the grocery store, bank, target, walgreens, gas station...all in my mask and I don't care.  Actually, at first I felt funny, and then I was sad, because people stayed away from me. Then I realized the benefit--- people get out of my way and are extra nice!!  There is no shame in protecting yourself from potential germs that could make your warrior training even harder than it already is!  They sell masks at Walgreens and pharmacies, but the hospital will give you a few boxes if you ask when you are discharged. 
• Sunblock if you go outside.  Everyone's chemo is different.  Chemo is tailored to your diagnosis, age, weight, doctor's recommendations, etc.  However, all chemo makes your skin sensitive!  Don't chance it!
• Lysol or Clorox sani wipes in every bathroom you use!  Every morning, I sani wipe my bathroom sink, toilet, and light switches.  Hey, your counts go up and down, and again, why make things worse?  Besides, its good to be proactive.
• BOOST or ENSURE drinks are great if you don't have an appetite, losing weight, sore throat, or not hungry.  They come in all different flavors, I like strawberry (tastes like a strawberry shake) and chocolate.  They taste best VERY cold.  Add some ice cubes or put in the freezer for 20 minutes before drinking. 
• Sour candies can help when you can't taste.  My first round of chemo everything tasted like metal, even my own saliva in my mouth.  The other rounds of chemo, it felt like my taste buds were asleep, nothing I ate had much flavor.  But, sour patch kids and lemonheads candies (to me) woke up my sweet and sour taste spots on my tongue.  I think it helped me. 
• Prayer helps.  There was an old man at chemo that would get all crabby when someone would say they are praying for another.  Even if you aren't spiritual or religious, people will tell you they are praying for you or they keep you in their prayers.  I've gotten cards from distant relatives who have had mass for me at their church.  Listen:  knowing people want to pray for you means you are important to them.  Its something they can do to help you, its a nice gesture, and it doesn't hurt.  Heck, I believe it really helped me.  I welcome all prayers and nice thoughts in my recovery.  I feel honored, actually, that I mean that much to someone for them to pray for me.  God works in mysterious ways.  Besides, if someone tells you they are praying for you, how hard is it to just say, "Thank you."??
• Keep a notebook or calendar marked with all appointments and how you felt that day.  Doctors like to know gross stuff, like the last time you went potty, how it looked, did it hurt, etc. 
• Keep hand sanitizer and use it.  Even if you aren't scared of germs, you will be surprised at how suddenly you become aware of what you touch before you touch your food/face/rub your eyes.
• Get the biggest pill case you can find.  Everyone who has cancer takes pills.  My pill case is 7 days, with 4 boxes for each day: breakfast, lunch, dinner, bedtime. 

I hope this helps!
L

A letter to my love

Dearest N,
I saw you cry for the first time in February, when the doctor came in the room and told us they thought I had this form of leukemia.  We both were shocked and cried together.  That day changed our lives forever.  I have spent many nights praying to God to keep me here a bit longer, because I wasn't ready to go, and mostly because I thought we haven't had enough time together.  I love you so much, and because of you, I was able to get through this thing called cancer.  I am a stronger person with your support.  You have spent every day this year taking care of me.  Sure, we have had some great breaks where I was fine and mobile and happy.  We've also had some days (recently) where I didn't get up from the couch all day.  You've seen the not so pretty side of me and how cancer affects someone.  You are wonderful and amazing for sticking by me and getting me through this.  I can't thank you enough for everything you have done for me.  I love you and thank God every day for bringing you into my life.
Love,
L

September 5, 2013

I didn't want to wake up today.  I wake up twice in the night to apply more ointment to my eye, and it makes for a tough time sleeping.  We also lost power last night, and N overslept a bit.  Frank was waiting at the front door for his morning potty walk and crying.  I felt so bad for him. 
I wore my mask yesterday to take Frank potty in the afternoon.  I knew my numbers were going up and doctor expected me to be in normal range in a couple days.  We were outside all of five minutes, but it was great, to feel the warmth of the sun.  Now, I just can't wait to eat raw, fresh fruits and vegetables!  Soon, soon, soon, I hope!
Two weeks until my next biopsy.  Its been a struggle, but I think I still have it easier than most people with cancer.  I feel like I am starting to understand my purpose in life a bit more.  I really hope there is someone reading this that is going through cancer or has someone close to them going through it, thinking, this is helping me.  Yep, I'm going to have bad days that suck.  Yep, I'm going to wonder what I did wrong for karma to kick me so hard.  Yep, I have cancer, but this is my warrior training and I will get through this.

My mom told me the other day, "You are so strong Lisa for going through this.  You can do anything now!"  I think she is right.  I think of the song, Stronger by Kelly Clarkson and just sing along and smile.  I am lucky to have my family and N and his family.  They have been rocks for me.  I hope I can be a rock for someone else.

Being Human

The past few days I have been neutropenic, which means I have very little white blood cells.  White blood cells fight disease and keep us healthy.  I have none, so I can't leave the house.  In fact, I have been a bit low on everything...platelets, hemoglobin, and white blood cells.  How does this affect my body?  I feel very tired, a bit weak, and shaky in my legs if I am standing too long.  I can't really walk or even go outside.  I wear a mask when anyone comes over to let my dog out potty.  It sucks.

Well, since I have been neutropenic, I started watching Being Human, a BBC show.  I am lying on the bed watching tv in a marathon style fashion.  I have gotten through the first two seasons and am in the middle of the third season right now.  This show is about a ghost, werewolf, and a vampire all living together, trying to be "human".  They yearn for normality.  I can relate.  I haven't felt normal since February, the day everything happened.

Actually, I almost feel like the girl I was died that day.  I feel like I am not the same person, not the same me I was.  I wish I could say this was a good thing, and I'm stronger and yada yada yada, but I can't.  Sure, I feel stronger, but I feel like I don't know myself that much anymore.  I feel out of sorts.  Can anyone with a life changing illness relate?  Have you had cancer of any type and felt just not the same afterwords?  Please, please share.  I want so much to return to normal, but  I don't know if my brain will work the same anymore.  I don't know if I will be the same anymore.  Part of me fears taking any vitamin, getting even a papercut, going somewhere alone.  Part of me can't wait to get back to work, buy my own groceries again, bake some bread, go through my things and get rid of the clutter in my life I held onto for no reason at all.  Things that were important before cancer just aren't anything to think about now.  Priorities changed in an instant.

The nightmares

Back in February, when I was rushed to the hospital and told that I had leukemia, the nightmares began.  Very detailed, vampire nightmares that were so scary.  Sometimes, I would wake up in the hospital, middle of the night, drenched in sweat.  Was it from the nightmare or the cancer?  I don't know, maybe a bit of both.

These nightmares were detailed.  They were scary. I couldn't fall back asleep and then would think about them the next day.  I can see the correlation, though.  Nurses were taking my blood and testing it multiple times every day, I was getting blood products, I was just diagnosed with a blood cancer.  All makes sense in hindsight.  In the dreams I was running, hiding from the vampires.  They wanted my blood and wanted to destroy me and everything I love.  It was very dark and dreary and run-down, everywhere.  Life wasn't the same.

But, the fear I had about vampires seems to be gone now.  I just think if they were around, I wouldn't be scared.  The same goes for any bad guy-- like an attacker or robber.  I wouldn't be scared.  I would fight and kick butt.  That's right, like a warrior.  I feel like cancer has been my personal warrior training.  My dear friend told me that daily when I was in the hospital for my induction chemo.  "Lisa, this is your warrior princess training."  He told me I could do this, and he was right.  Here I am, almost September, and I just finished my last round of chemo.  I am ready for my 4th bone marrow biopsy coming up in a couple weeks and then maintenance therapy for a year.  I can do this.  I am in the home stretch.

Neutropenic

I've been neutropenic for over a week now.  What is neutropenia?  Its when you have little to none white blood cells, which are your fighters.  Without them, your bodys immune system is suppressed.  For me, this happened as a result of my last round of chemo.  Monday's blood work showed my lowest ANC (absolute neutrophil count) yet, 0.15.  Yesterday, I was up to 0.42.  

This past week, I've been very tired.  I haven't left the house with the exception of blood work/ doctor visits.  I've worn a mask every time I did go out.  My legs get all shaky if I stand for more than ten minutes.  My mind is awake, but my body thinks I'm sleeping, its very weird and hard to explain the feeling.  

When you are neutropenic, you can't eat anything raw.  No fresh fruits (and it's summertime!), all meats and veg need to be thoroughly cooked.  Because of the cancer and chemo, I've been eating mostly soft foods, so I dont scrape up the inside of my mouth too much.  Too much risk of infection.  I also have to watch my temperature and need to get to the ER if I run a fever.

I am hoping and praying my count is at least 1.0 on Monday.  I'm sick and tired of feeling sick and tired.

Chicken Soup for the Cancer Survivors Soul

My boyfriend's mother gave me a book titled, "courage: 100 verses for your daily journey".  Very inpiring, but I could not find it on amazon.com.  I did a search for other books that are inspirational, and this one is on my list--- I will be a cancer survivor!!