Stay Strong, Shannen Doherty, many of us know exactly what you are going through.

http://www.today.com/health/shannen-doherty-s-breast-cancer-has-spread-unknown-scariest-part-t101358

The article popped in my feed on Facebook and Yahoo! the last few days.  Shannen Doherty has breast cancer, and the pictures of her losing her hair, looking fragile and thin, and the worst news for anyone...the cancer has spread.

Its all over ET (Entertainment News), Yahoo! Bing, MSN, Today.com, facebook, twitter, and GMA (Good Morning America).  The sad thing is I was in high school when Beverly Hills, 90210 made its way into pop culture.  I was a freshman, with long dark brown straight hair and blunt bangs.  I had big plump lips and big eyebrows.  I felt like Brenda Walsh...in a new world...high school in Northwest Indiana in 1990.  Life was good and everything was new.  The digital age was coming, and nintendo and Sega Genesis were all the rage.  MTV still showed music videos (well, now we will have Classic MTV soon, right?).
I grew up with Brenda Walsh and then I became an adult while Shannen played on Charmed.  People my age can relate.  I fought leukemia, so I can relate on another level.

My heart goes out to not just Shannen, but her family as well. My heart goes to everyone who has been affected by cancer.  Family, friends, patients, caregivers...

In fact, today, I talked to my good friend, Sonda.  She is wonderful, we met when we both worked for the same real estate company, practically ten years years ago.  Today, Sonda has her own daycare she runs.  She is passionate about life, God, and her family...and I feel the same, so today was a great day, because I got to talk to my friend, whom I adore.
She reminded me to trust God, he got me this far.  He blessed me so many times, why would he have me go through all I went through with my leukemia, just to let me get trapped up in my own fears...the fears of relapse, the unknown, other health issues, more cancer...you name it...why would that be?  She is right.  I hold a fear of the unknown very strongly...and it keeps me from doing even greater things in my life.

That has to stop today.  I need to put that fear aside and become fearless.

Suck it up, buttercup!  

PS
Shannen: If you read this, hang in there!  It's not fun, regardless of what type of cancer you have--- chemo every day like me or once every week or two weeks...it sucks and we are not ourselves, but we are in warrior training through it.  I feel its like a conscious coma, we are going through the actions, we know what's going on, but its surreal and when its done, you won't think it was that bad.  What happens to our bodies makes us think we are experiments--- that we pay for.  Insurance companies are headaches and nightmares that we think about daily.  We miss a lot and we feel like a dish in the china cabinet everyone is afraid to touch----like we might break.  People you love will be scared to come near you or even touch you....why, for various reasons.  Don't let that break you--- be strong, be you.  You are not alone, and you will get through it.

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:
https://www.yahoo.com/health/woman-who-lost-hair-to-cancer-cant-use-old-215609669.html

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)

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

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

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.

Right now I am in chemo Monday thru Friday.  Yep, that's every weekday.  I call it my new "work".  I wake up around 6:30, shower, eat and take pills, and head to the hospital for chemo.  I am mostly done by 11:30/noon.  I head home, eat, and nap until 2 or 3.  By then, my dog is really ready to go potty and I get a whiff of the fresh air.
Today, the air was hot and humid.  My skin didn't like being outside.  I know I must have mentioned that your skin gets sensitive.  It gets really sensitive.  The bottoms of my feet have peeled, leaving them super sensitive and achy.  It hurts to walk right now.  I also have the fear in the back of my head reminding me of my first hospital stay...5 weeks of being bedridden...and walking the hospital floor a few times a day didn't help.  My muscles atrophied (is that a word?).  I don't want that again.
I was hoping to be all better by summer.  Now, summers here and I am still sick.  I can't wait for this round of chemo to be over with so I can move on to the next part of this chapter in my life.

Oh yeah, and I go through so much cream right now on my skin its annoying.

Inpatient Chemotherapy

As I am finding out, when you have leukemia, you stay in the hospital much more than when you have other types of cancer.  I think this is in part because they take and test your blood 1-2 times a day.  Depending on your counts, you might need to get platelets or other blood products to make up for what your body is not producing.  With APL, I also was on a variety of pills and medications, ranging from anti virals, anti fungals, anti biotics and even potassium and magnesium suppliments. 

Right now, I am here in the hospital for my first week of consolodation chemo, which is after your first round, you go on consolodation chemo, which is to make sure the cancer goes away...and you go into remission or are cured.  My chemo this week is different from my first round.  Every morning they give me an ekg to make sure my heart is healthy enough for the chemo treatment.  After this week, I will go home and finish the remaining chemo as outpatient. 

But, right now, I am in the hospital for one week so they can monitor me and make sure there is not an adverse reaction to this chemo.  I am not hooked up to the IV, except for chemo time.  Since I knew I was going to be spending a week here in the hospital, I packed a few things to keep me busy, like my laptop, ipad, cell phone, yarn (for crocheting), and a couple books.  My bag also was stuffed with clothes, chocolate and small microwaveable frozen pizzas.

My hospital encourages patients to walk around the floor during your stay.  Because I feel good right now, I wanted to walk around the hospital and go exploring, but they do not allow that here.  You are confined to walk around your floor only, which can be boring.  Its important to walk while you are here, though.  I also try to leave my door open as much as possible during the day.  Otherwise, I start to feel lonely and this weird feeling remeniscent of being 12 and grounded for the weekend.

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.