Thursday, October 8, 2015

Drivers License and IDs and how we look with Cancer

I read an article on Yahoo! this morning about a woman who was in chemo, lost all her hair, and could not use her old picture when renewing her drivers license.

You can read the article here:

I wanted to share a story related to this that affected me, and I also want to share my feelings on this, as I experienced the hair loss and sick "look" for over a year.

Me when I first started getting hair after chemo (2013)

Monday, September 28, 2015

What an honor!

The Best Leukemia Blogs of the Year

I didn't know anyone read my blog, honestly.  I feel so honored!

I promise to keep a bit up more with my blog and to know what I write about
might really help others get through their treatment.

Read more about the best Leukemia Blogs here:

Sunday, April 5, 2015

Itchy Rash all over hands, neck, chest, shoulders and face along hairline

So, if you look through older posts, you will know I was dealing with a mysterious rash this winter.  It started around January 1, and has come back after treatments. 
My GP gave me Medrol in January, and when it came back Jan 30 (about 3 days after the Medrol pack was finished), I went to a dermatologist who prescribed me a prednisone regimen.  This helped greatly, and we were able to go on our trip to Vegas, as the rash stopped itching, cleared up, and I felt great. 
A week after the prednisone was finished, I started to itch again.  The rash came back and this time spread to my shoulders and arms.  It was a bunch of tiny raised red bumps.  My derm decided to refer me to an allergist.  In the meantime, I was given some 2.5% hydrocortisone cream.  Don't use this on your face, as I found out... it clears the rash, but then you have a feeling of sunburn on your face.  In retrospect, I should have known better, my skin is pretty sensitive anyway.
Here we are, into April, and I am still dealing with this rash.  I had my first allergy test (the prick kind, on your back) last week, and this week I will have another test.  Wow, its uncomfortable, I'm not going to lie.  Didn't like it one bit.  They poked my back with 40 pricks, each with a different known allergen.  Then, she said I didn't react to some of the most common ones, so she injected my arm with 13 additional -- to recheck!  Not fun, and very uncomfortable.
Two weeks ago, I decided to stop taking my last medication, which was a hormone pill (its just birth control) Amethia.  Amethia is a generic for Seasonique.   Guess what?  A week after stopping that pill, I began to notice less itching.  Was it from the removal of the pill or was it from the massive amount of maintenance on the cortisone cream and other skin creams I have been slathering myself in?
Now, today, I started itching a bit more again.  I'm wondering if this itching is because my skin is dry or if the itch and rash weren't from an ingredient in the pill but still from something else?  I'm wondering if it could be a simple ingredient or something in a hair shampoo.  I was on baby shampoo, and the allergist suggested Neutrogenia shampoo.  I bought both the once a week shampoo and the TGel therapeutic shampoo, which mentioned dermatitis and eczema on the label.  It stinks so I don't use it often.  I will be using it tomorrow, though...just in case the other shampoo is the cause. 

Monday, February 2, 2015

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. 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!

Sunday, February 1, 2015

Update on Mysterious Itchy Rash

I'm almost 1 week in my prednisone script trying to get rid of the itchy rash (again).  So far, knock on wood, the redness is fading, the itchiness stopped (the first day) and rash is gone.  My neck, face and upper chest is still a bit red toned, and my boobies have little pimples on them, but I think that might be from all the moisturizer and goop I've been slathering myself in.  *please no weirdos here*

Prednisone, like most steroids I have been prescribed, really affect my digestive system.  Its been a lot of bloating and comfortableness.    I have been trying to ease the issue with prunes, low sodium V8, oranges, and lots of water, along with frosted mini wheats for breakfast.  Neil bought me some natural ginger ale..but trying to stay away from breads has been hard.  Gosh, I love bread.  I love baking, and during a snow storm, what is a girl to do? 

I hope everyone is enjoying the Super Bowl (those who watch it or the commercials!).  I'm not interested, so I'm going to read or do something else.  I'm not in the mood to knit or ramble any further, which is good for you!

Have a great night,

Thursday, January 29, 2015

A mysterious Rash, possibly solved.

Two months off maintenance and I had a checkup this week with my amazing hematologist/oncologist.  My numbers are the best they have ever been since my diagnosis almost 2 years ago!  This is wonderful news!!

However, we had the talk that I knew I deserved...that I knew was time for and didn't want to hear:  I need to see other doctors when I get a cold, rash (yep, have one), or other 'healthy people' issues.

Its tough to hear, because you rely and depend on this one doctor to do all the worrying for you.  She is amazing, and I am alive because of research and her.  She pushed me, and she held me when I needed it.  She always answered my calls and I will continue to have more checkups with her, however now I also am blessed to have other doctors diagnose normal people problems, lol!

So, in parallel news, kinda where the talk came from:  I have a very itchy face and neck.  It started in the beginning of January, and I let it go until last week, about Jan 21.  I saw a GP, who said it looked like contact dermatitis and sent me home with a script for some Medrol pack.  While taking the steroid pack, I was fine and dandy, but a day after finishing it up, I started to itch again.  The rash hasn't reappeared yet, but I really think it was from my constant itching and scratching.  My doctor at Rush gave me a talk and told me its time to see a dermatologist for a better understanding and testing.

Voila!  I called on Tuesday and the derm had an opening that just cancelled on them for the next morning!  It was a miracle.  This Derm doc is amazing.  She put a thought in my head, asked if any of my scripts were made by different manufactures?  I said no, but then I woke up early this morning and immediately thought of the generic Zyrtec my dad got me, and I used it when I ran out of mine, about the same time, maybe a few days/week before my itchy-ness started!!  I am now thinking that the generic Zyrtec might have been the culprit!! 

I hope everyone who is reading my blog is healthy and well.  I know many reader who message me to let me know they are experiencing the same or another leukemia.  Its important to remember we aren't in it alone and that other people are going through the same thing.  I pray for all cancer patients daily, and I just want you to know there are others like me who want nothing but cancer eliminated from our lives.

take care and be well!

Friday, January 23, 2015

Note to Gramma Honey

Gramma Honey,
Do you remember when I was younger and I got a bunch of Neutrogena samples?  I gave you some of them...I remember you were very excited about moisturizer.  I remember we were listening to my tape of oldies, I think it was the soundtrack from My Girl.  We were living in Munster at the time, and I might have been 14 or so.  You told me all about how moisturizer would be a necessity and my best friend as I got older.  Do you remember?

Well, it is something I need so much all the time right now.  I need you too, Gramma.  I miss you and I know you are up there helping me out and staying by my side.  Oh God, I wish I had you near me.  I wish I could let you know how much you mean to me.  I love you so much and I am so disappointed in myself in how I acted in my 20s.  I didn't visit you enough.  I didn't spend enough time with you, and it hurts me so much now. 

I don't know where that memory came from, I was doing something completely different, and I had the memory of giving you those samples and thinking about how I desperately need moisturizer nowadays.  My skin is so dry, I don't know what from.  My body doesn't want to seem to get back to "normal" and it is taking a mental toll on me.  I just want to be me again, and I don't really have anyone to talk to about it without worrying them.  Somehow, I know you would understand.  You would tell me you were sorry I was going through this, just like mom would (I'm sure).  I just wish I could have a hug from you and some of your cookies, lol.

I always tell Neil to keep close to his Gran, she is so great, she reminds me of Aunt Kay.  She speaks her mind, and she is independent and wonderful.  I love her.  She also makes me miss you and Grandma W, too. 

Thank you for being such a wonderful and loving gramma.  I miss you every day.  Oh, I know why I probably thought about you.  I used my trunk today, and I keep that little pink rabbit I sewed for you back in 6th grade.  I got it back after you went to Heaven.  I put it in my trunk of my car and kept it there ever since.  Maybe tomorrow I will take it out and wash it gently and move it to my bedroom.  It reminds me of you and how much I love you. Always.
Your Granddaughter,

Sunday, January 18, 2015

Update on life after chemo and maintenance: Itchy Rash!

Yep, chemo is done, maintenance therapy is done and I was feeling on top of the world.  Until 2 weeks ago:

I've been working hard, trying to lose weight (oh my gosh its so hard!), and now I have the worst dry skin ever.  Its funny, because I thought I had dry skin when I was on the ATRA or Tretinoid pills, but this is worse.  My face is so dry, I peel and flake all day.  It itches.  Its annoying.  Moisturize, Moisturize, and Sarna!  Plus, now my neck itches and has red marks on it.  I think I gave myself a rash.  The Sarna is starting to work a bit.  I've been dousing myself in Clinique moisturizers (two different ones) trying to soften and heal my skin. 

Well, I go to my primary tomorrow, hoping he will have an answer.  Part of me thinks its from my Zyrtec.  My skin and throat were very dry about two weeks ago, and I stopped taking my Zyrtec.  I thought I was overdoing it and maybe it was time to stop.  It has been almost 2 years of taking it off and on, and this last time I was on it over 2 months, every night I took one.  Zyrtec is an antihistamine, and it worked very well.  I took it at the advice of my oncologist when my nose wouldn't stop running after I came home from my induction chemotherapy (first round, the worst).  Zyrtec does make me sleepy, but you only take one a day, so I would take mine before bed.  Put me out like magic.  The only problem I thought was when I would stop taking it, I would wake up in the middle of the night and have a hard time falling back asleep.  Of course, I still take naps during the day and sleep about 10 hours each night (8pm-6 am, roughly).

After the neck started itching a lot, I googled "Zyrtec and Itchy face neck" and saw a lot of sites where they talked about this happening to people and it taking sometimes over 30 days for the itching to subside.  Yikes!  I don't know if this is the case for me, though.

In the meantime, I've washed all my bedding and coat/hat/scarf in that fabulous Dreft (hypo-allergenic) for babies.  Now, I smell like my nieces, Sara and Izzy.  They always smell so good, lol, ha!  I know your secret!! 

I've also been moisturizing and not showering every day.  Makes it hard, but with short hair and it being so cold and dry outside, I'm always in a coat and I'm thinking no one will notice. 

The smell of the Dreft detergent will whiff them away to babyland anyways.

Any takers on this one?  Have you experienced any itchy skin/rash after quitting Zyrtec or maybe just part of the adjustment period after chemo or maintenance?  Just curious.