8 days of crazy

We finally got to celebrate my remission with a trip to Las Vegas!  We were there last Monday and came home Thursday.  Friday morning, I woke with my usual nausea and an added bonus:  feeling like I had the flu.  My temperature was 99.5, I was coughing, stuffy and congested, had obnoxious post nasal drip, and felt like crap.  After a call from my NP (nurse practioner), it may be the flu, and I was told to monitor my temp and stay at home.  She told me to take mucinex, robitussin, and sore throat lozenges along with plenty of water, Gatorade, and Ensure. 

By Saturday at dinner, my temp was 100.5.  This is it.  Time to go to the ER.  I decided to eat dinner first and take my temp after.  If I went to the ER now, I would be hungry for hours.  I ate a little more than half my dinner, which was an improvement from Friday's dinner (a few bites of a ham sandwich).  My temp went down to 100.3.  Haha!  I decided to not go to the ER just yet, and continued to monitor my temp the rest of the night.  It stayed between 100-100.5 until bed, and when I awoke on Sunday morning, it was back at 98.7!!  I finally broke the fever, and it was a great feeling.

I was scared of the ER.  I knew from all my previous fevers this year what would happen.  The blood draws, the pee test, possible poop test, the chest xray, maybe fluids.  I was not looking forward to it.  I didn't want to go, and I probably should have.  I guess I'm a bit stubborn.  But, I feel a bit better this morning.   Monday morning, and I woke up and put some laundry on.  I even took Frank out potty.  First time in over a week!!

Where did the time go?  Now I have tons of stuff to do, but little energy to do anything.  Today, I was supposed to get some fillings at the dentist, but NP told me to stay inside for a few days, so I called to cancel the appointment.  Hopefully I can reschedule next week. 

I still have Christmas shopping to do, and about a week until Christmas.  I started a sweater for my mom, but its nowhere near done and I am having a tough time with it.  I need a back up plan!!

I need rest.  Still have a cough and congestion, so I need to take it easy today. 

More on our trip to vegas later. 

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!

Do Something Nice DAILY

Since my birthday, I have been on this kick to do something nice everyday.  Kinda like paying it forward.
Today's DAILY niceness: wrote an email to the restaurant I had lunch at complimenting the workers and great customer service. 

Remission!

I haven't posted in over a month, sorry about that!
The long and short of it:  I am in remission!  Yay!  I started maintenance therapy, which is a daily pill regimen.  I am taking more ATRA (tretinoin), methotrexate, folic acid, and 6-mcr (did I abbreviate that right?) for one year. 
I have spent this entire month in physical therapy, because my right hip has had shooting pains on and off since summer.  Its so much better from physical therapy.  Anyone who tells you physical therapy is a joke didn't take it seriously and doesn't know what they are talking about. 

Okay!  That's about it.  I am hoping to remember to continue on this blog, but I will start integrating other parts of my life, as well.  Trying to get to normal is my next adventure or chapter in this book...

L

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

How to live forever

I watched a documentary yesterday called "How To Live Forever."  I'm someone who does not want to die, so this peaked my interest.  It made me think, for sure. 
Now, I'm on the road to getting healthy, but in February and March, I prayed multiple times a day, asking God to keep me on this Earth a little longer.  I was scared.  I still am scared.  Scared of being ill, scared of living, and even scared of dying.
Its been about 24 hours since I saw How to Live Forever, and I am still thinking about it.  They don't have a clear solution to live forever (obviously), but it looks at modern technology, interviews with some of the oldest people and communities in the world, and makes you think.  Do I really want to live forever?  Seeing how some people age, or more like how they begin to deteriorate (for lack of a better word), I see how someone can get tired with living.  I also see how someone 100 years old can still be working and drinking and smoking. 
What I took away from this documentary is that if you let your body and mind get sedentary, you will age faster (or die younger).  The trick is to keep your mind and body active.  Eating healthy and having healthy genes also help, but, hey, I already have a life threatening cancer...lets focus on what I can change!

No, I don't want to live forever.  I do, want to grow old, though.  I think I have determined I am more scared of the unknown, what happens after you die, not of death itself.  I wish we could be guaranteed our souls move on to another place or dimension, but its hard to know what to believe, with so many different religions telling us different things. I know one thing.  Each one of us will die.  If we all could live forever, there would be a population issue.  I enjoyed this thought provoking look and really appreciated the documentary in a way I probably wouldn't have before my diagnosis.

I watched this online as an Amazon Prime member for free.  I don't know if its available on Netflix, but completely worth renting!



 

On a brighter note, I think I will work on my obituary (just in case) this week.  Not trying to be morbid, maybe a bit vain. 
Have a happy Sunday,
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.

Update

Guess what?!  I am only mildly neutropenic!  My ANC yesterday was 1.2, which is wonderful!  I am getting there!  I can't wait, done with chemo, getting my bone marrow biopsy in two weeks, and then hopefully on the road to recovery.

Today I tried to do a few dishes, but that's about as far as I got.  My legs still get really shaky and feel weak after standing for twenty minutes.  Its scary, but I know it will go away.

I have an ointment for my eye because I have a slight infection in it.  It is not fun trying to get this stuff in my eye every four hours, but I am trying my best.  I want it to go away as quick as possible.  My skin is dry and starting to peel again, not fun, but I am determined to get through this last part of the chemo process.  I am a warrior princess, training is almost over and life can begin again!!

The end of summer

Happy Labor Day.  Its the unofficial end of summer.  Originally, I was hoping to be better by the beginning of summer, and that didn't happen.  Then, I was hoping to be better by August, and now we are in September.  Summer is over, and I'm housebound because my immune system is so low.
I've spent most of my summer stuck inside, with my parents and sister visiting me to take me to the doctor, get blood work, or to let out my dog.  Its been tough, mentally.  I spend more time playing candy crush and checking what everyone is doing on facebook because its interesting, but it also makes me sad sometimes.  I can't go out and do those things.  I can't run a marathon because I am too week and I have three tubes hanging out of my chest.  I can't go to a concert because there are too many people and my immune system can't handle it.  I can't have a cold beer on the back porch or on a boat because I am on too many meds.  That part sucks.

What I can do, is be grateful I am alive.  I am so grateful.  Thank you, God, for helping me heal and giving me each and every day.  I am truly blessed.  Every morning I wake up, and I feel like there is something new going on, sometimes good, sometimes bad.  Yesterday, I felt I had more energy, but I also woke with a pain on my eyelid.  I am sure I am getting a sty, but I see doctor tomorrow and will know more then. 
This is where I tell myself that I am here on this earth to help others and make a difference. I promise God every night when I go to bed I will do good, and when I wake up, I think about how to start (when I'm finally allowed to leave the house).

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.

Poor Frank

Todays the kinda day I feel guilty for being sick.  My poor dog Frank, as seen in my google profile, is sick of staying home.  When I was healthy, pre-cancer, we would walk daily.  I would take him to our county fairgrounds and just walk and walk, letting him sniff, mark, do his thing.  He loves it there.  Being neutropenic, its best to stay inside, besides, I don't have the energy to walk him anyways.

I love Frank bunches.  It hurts me to see him sad and mopey around the house.  He has spent the last week just laying by my feet, following me wherever I go in the house.  He knows.  He knows, but I keep telling him I am on my way to getting better.  Soon, we will be back at life, walking, taking him for car rides, back to normal,  I hope.

Frank is very picky.  He doesn't like strangers, and especially dislikes men.  He was a shelter dog, and he has the attitude of a grumpy old man.  He's very loving to people he knows, but very protective of me.  Right now, he is sitting on the bed next to my desk, looking out the window, barking at the people walking by.  He is small, but a total thug.  He acts so tough, but gets away with it, because of his big, pug-like eyes.  I can't say no when he is staring me down.  Oh, poor boy, I promise to get better as soon as possible so we can go walking and visiting mom and dad again!

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.

Last round of chemo done!

I just finished up my last round of chemo last week.  Today, I am neutropenic, which is what the doctors want.  I am tired, weak, and my legs are all shaky.  I can't wait, though.  I know this will be the last time I go through neutropenia!
I have made myself a goal to really try to expand this diary to include more, not just cancer.  I read up on other blogs about cancer and am so touched by everyone's stories.  Its comforting and sad at the same time.

numbers are up!

Yesterday, I went in for my weekly check up and blood work.  My ANC (neutrophil count) has gone up to 1.3!  This is great, it was so low for over a week.  I will be happier when I reach 1.7 (or hopefully 2.0), but its still a reason to celebrate. 
I slept most of the day yesterday and was up and down all night, as usual.  I still get night sweats and hot flashes which makes it hard to get any measurable amount of sleep.  I feel like I have more energy today, but I am still a bit shaky when I am standing.  I think this will go away as my numbers increase and normalize like last time I was neutropenic. 

In other cancer related news, my hair is falling out at a rapid pace.  I am doing some laundry today just because I can't stand seeing all that hair on my pillow case.  I've been wearing a scarf to collect the falling hairs, but it comes off at night while I'm sleeping.  Besides, my towels the past few days have taken a furry hit and look so gross, covered in tiny, 2 inch ringlets.  I expect all my hair to be gone by Saturday at this rate. 

Good Morning World! Ugh, I mean Good Afternoon World!

I didn't feel so good this morning, but now I am up and ready to face the day.  Too bad its almost noon, and half the day is gone.
Today was dressing change day.  Once a week, your dressing covering up the central line (in my case a hickman catheter) needs to be cleaned and changed.  The caps at the end of any ports (lumens) also need to be changed.  I flush all my lines daily with a special medicine, Heparin.  I do my dressing change and flush by myself, and I take my time.  I have to prep the area, sanitize and get my shower done first before changing my dressing.  That part of my skin will now be itchy all day, from the adhesive in the dressing and the alcohol cleaning solution to make sure its germ free.

Otherwise, I get more blood work done on Monday.  I am really hoping my ANC is up, at least 1.0.  I feel really good right now, so I'm thinking if I have more energy, hopefully my blood is getting back to normal.  Makes sense, right?

I've been knitting a sweater, and I started right before I went in for this last round of chemo.  Its been a couple weeks, and I am about half done.  Its my first hand knit sweater.  I have made scarves and hats before, but this is a first.  I'm really excited, but trying to take my time to not make any mistakes.

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.

Tuesday July 23 2013

I had another round of inpatient chemo last week.  Only three days, but the effects are still lasting.  I think I smell different.  I have nausea.  I have diarrhea.  I feel shaky.

I have to do this one more time. 

I can do it.

I want to write more, but I just don't have the energy or want.

Thought

Sometimes I wish I could go back in time and be a better person.

Last day of chemo!

Today was my last day of the third round of chemo!  I'm hoping this is it, but my doctor did tell me I might have to do 1 or 2 more rounds.  We shall see!

Last week, I started feeling achy in my shoulder area, in addition to my right hip and the bottoms of my feet.  My local doctor told me he thinks its a side effect from the chemo.  I am hoping he is right.  I get so nervous nowadays, every little thing just makes me think, "Okay, what else?"  My body is very stiff throughout the day, especially in the morning, after waking up.  The hot flashes and night sweats are enough, aren't they?  I am hoping my body starts to normalize soon. 

The nurses at chemo had a cake, cookie bars, and presents for me today to celebrate.  I was getting chemo every weekday for 5 weeks, that's a lot of chemo.  It was really sweet.  I love to crochet, so they gave me some crochet thread and a crochet book.  Very nice and I can't wait to start. 

Next week, I get my 3rd bone marrow biopsy.  I am nervous about it, but the nurses told me to not think...hope...but think gone.  Already gone.  Everything is clear.

Otherwise, I feel really good...except for the stiff shoulder, neck, hip, and feet.  The feet are actually starting to feel better.  I just want my body to return to normal.  Oh please, God, please give me some normal back.  Living is great, and I am thankful for everyday, but the achy shoulders suck when you want to make bread or cookies.

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.

They don't tell you this about Chemotherapy!

Going to chemo doesn't hurt.  I'm in my fourth week of this cycle of chemo.  I go Monday thru Friday, every morning.  The doctors office has a room set up kinda like the bar at Applebees or TGIFridays.  The nurses station is in the center, and surrounding it (in bar like fashion) are a bunch of reclining seats with poles.  My doctors office has 8 seats surrounding the nurses station.

There is a regular type chair next to each lazyboy style chair for the loved ones who want to sit through the experience.  Nurses come and check on you, take your vitals, draw blood through your port, and bring you snacks and drinks.  They also get you blankets if you are chilly (it happens even on the hottest days sitting in the same chair for hours).  Its not as bad or as boring as I thought, just bring something to do to keep you busy.  Most people learn crochet or knitting...yes, even men, and work on that while in treatment.  Other people read or watch tv or play with their smart things.

However, even in the hospital, I noticed changes taking place to my body.  I inquired the docs and they always chalk it up to "thats part of chemo".  These side effects don't affect everyone, but they are possible:

• Hair Loss:  We all know people thin out or lose the hair on top of their heads...but some people (me included) lose other hair...I lost my nose hairs and it was an awful experience.  Your nose is always running and when its dry, it hurts. 
• Brittle Finger/Toe Nails:  Might sound disgusting, but besides being brittle, most of us get this tell-tale horizontal line (and even a change in smoothness or a bump) on our nails.  They become weak.  I actually bumped my toe and my toenail cracked off!  Another nasty side effect.
• Loss of Appetite:  Again, this one you might have heard. Some people have a hard time with cold foods/drinks.  Others have a tough time tasting.  During my induction (first round of chemo), my mouth tasted like metal.  My saliva tasted like aluminum and it was awful.  I hated eating.
• Skin sensitivity:  We all become more sensitive to the sun, so we wear sunblock.  My skin actually starts peeling, including the soles of my feet and my lips.  Again, things that you think wouldn't be a big deal but end up really making life hard. 
• Night Sweats/Hot Flashes:  I was recently informed by my doctor that I was going through chemo induced menopause.  The night sweats seemed to be common amoungst the other patients as we talked about our own issues.  Both men and women, young and old complained of the night sweats.  Then, I started getting those sweats during the day.  At random times.  The thing about the sweats is that you get super duper hot, sweat (a lot or a little), and then get very very chilly...in a matter of 3-5 minutes.  For awhile, I was getting night sweats every hour like clockwork.  Sleeping is hard during this time.
• Loss of Sexuality:  My doctors told me "no sex" while I'm getting chemo.  No worries there...besides being bald, achy, tired, peeling skin, runny nose, and toenails popping off, you don't feel 'sexy' or vibrant at any time.  My body kinda turned that portion of me off, like a switch, if that makes sense. 
• Your Central Line/Port Restricts YOU:  When you are diagnosed, the doctors arrange for you to get a type of central line/port installed.  Its an easy way for them to administer your chemo, draw blood, give you drugs, etc without constantly having to stick you.  Some people have ports surgically placed under their skin, so they still get stuck, but they don't ruin their veins.  My port is a Hickman Catheter.  I have three different ports, but they hang out of my body.  I have to flush them daily with a special solution to prevent infection and blood clots, but the point is ... they hang outside of my body....these little tubes just jet out of my chest and are there.  It restricts exercise, activity, playing too much or rough with my dog, swimming, bathing...even how you sleep.  Its tough because its a daily reminder about your condition.
• Achy Body:  Your muscles and bones just become tired.  Lethargic is a new word you are used to saying in response to, "How are you feeling today?" 
• You Go a lot or Don't Go:  Yep.  Its one or the other...constipation or diarrehea.  On chemo days you probably go no. 1 a lot, too!

I might add to this list as I come across more side effects or talk to more cancer fighters...those of us in warrior training sure like to talk shop!

I'm hoping to go home today...

Today is the fifth day of my inpatient chemotherapy.  I am waiting for my final EKG, then this afternoon I will have my chemo pills and my IV chemo treatment.  After that, I am hoping they allow me to go home, so I can do outpatient chemo for the remainder 4 weeks of my consolidation therapy.

Even though I knew this was going to be a short trip, and I have not felt sick at all...I still can't wait to go home and sleep in my own bed.  My last stay was 5 weeks long, and by day 3, my boyfriend had brought me blankets and pillows from home.  Oh it felt so good to have my own blankie and pillows!  The downside is there is so much to bring back home when you leave...like you are moving out of a small apartment.  We didn't do that this time, because I knew I was only going to be here a week or so.  The small baggie of chocolate kisses and mini york peppermint patties have disappeared, though. Should have packed a few more of those.  Mental note made for next time.

If you have never been a guest at a hospital for more than 3 days (and I never did before this), I can't tell you how much you begin to miss your normal life.  To me, it feels like a very nice prison.  You can walk around the floor, but not around the hospital.  You shower when they can help you.  You eat when they bring your food.  Heck, you begin to look at the clock at noon because you know its almost time for lunch...between 12:15 and 12:30 it will be delivered.  Most days something is missing from lunch, too.  Or, its cold.  Then you have to walk to the kitchen area to warm it in the microwave.  Ice cream and chocolate milk become the top commodity in the kitchen.  If you see ice cream or chocolate milk in the fridge and freezer...grab it whether you are hungry or not, because its rare they stock those in there.

I spend a lot of time on facebook, twitter and on the phone while here at the hospital.  I can't wait for visitors, even if we have nothing to say or talk about.  Just having the company is so meaningful and welcome.  I usually feel bad we have nothing to say, or if I am too tired and fall asleep.  That is something you can do if you know someone with cancer or is sick in the hospital.  Visit.  Bring a magazine, game, or even snacks.  Just sit there and laugh with them or hold their hand.  It truly makes all the difference.

Women fakes Cancer to fund her heroin Addiction-- UNREAL!

http://news.yahoo.com/blogs/lookout/cancer-fake-heroin-scam-143010101.html

The above article on Yahoo! this morning makes me sick.  A 20something woman raises money for her alleged cancer troubles only to find out she was collecting donations and using them for her heroin addiction.  As someone who is struggling with medical bills and obscenely priced prescriptions, I take great offense to what this lady did.  I may one day need to ask for donations to cover my medical expenses.  Cancer is very expensive, even if you have insurance.  And here is an example of someone ruining and spoiling these acts of kindness and generosity.  People work hard for their money, and most of us want to help others (when we can).  There have been times I personally would have ramen noodles for lunch an entire week so I could spend money on supplies for the animal shelter just because I wanted to help.  I wanted to feel like I did something good for another, even if it meant my grocery budget that week would be cut short. 

Don't think all people asking for donations or those who do need help are liars like this woman.  It makes you think, for sure, but I still want to believe most of us are good and would not scam an entire town or area like this lady did.

Shoes

During my initial stay at the hospital for APL, I wore slippers all the time.  The nurses encouraged me to walk frequently to keep my energy up and get me out of bed.  When I got home, I had to get used to wearing shoes just to go to get my blood drawn or walk outside with the dog. 

This time around, I skipped bringing my slippers and have been wearing my tennis shoes.  Today, I have them on, already took a walk around my floor and now still wearing them in my room while I type this post.  It feels good!  It makes me feel a bit of normal.

Something so silly and small can make such a difference.  When I walk around in pjs all day (which is very comfortable), I feel more lazy and I feel sick-- like I am helpless during the day.  My mind (and yours) can play tricks on us.  So, the past few weeks I have been wearing sweat pants, tshirts, and I think I am ready to graduate to jeans when I get home.  There is a fine line between comfortable and lazy.  But I know that I will start feeling better as I try to get back to normal life.  Its not like I can work, and we can only do so much at home, especially as weak as I feel sometimes, so I need to keep busy and try to feel normal-- and not like the chemo patient I am.

The Immortal Life of Henrietta Lacks

This book was my university's book of the year.  They have held seminars/discussions all year about this book, and I didn't attend a single one.  Since I have been sick, however, I have had more time on my hands.  This book has been on my nightstand here at the hospital this week, and most of the doctors and nursing staff have asked me about it or have read it themselves.  Its very good, and I highly recommend this for anyone that needs a push about their cancer treatment.  Knowing where and why and putting a person to why medicine has advanced (to give us the best chance of survival and cure) really makes me feel emotional, to say the least.  Thank you Henrietta, even though you didn't know and had no choice--- You have changed my life, for sure!

Here is the book description on Amazon.com:

Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine. The first “immortal” human cells grown in culture, they are still alive today, though she has been dead for more than sixty years. If you could pile all HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—as much as a hundred Empire State Buildings. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions.

Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave.

Now Rebecca Skloot takes us on an extraordinary journey, from the “colored” ward of Johns Hopkins Hospital in the 1950s to stark white laboratories with freezers full of HeLa cells; from Henrietta’s small, dying hometown of Clover, Virginia—a land of wooden slave quarters, faith healings, and voodoo—to East Baltimore today, where her children and grandchildren live and struggle with the legacy of her cells.

Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of.

Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah, who was devastated to learn about her mother’s cells. She was consumed with questions: Had scientists cloned her mother? Did it hurt her when researchers infected her cells with viruses and shot them into space? What happened to her sister, Elsie, who died in a mental institution at the age of fifteen? And if her mother was so important to medicine, why couldn’t her children afford health insurance?

Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.

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!!

Gilda's Club

Gilda's Club Chicago is wonderful!  They offer tons of programs and small events for those of us dealing with cancer here at Rush University.  All are free, and they take place at different times at many hospitals in Chicago.  I was familar with Gilda's Club from Gilda Radner and her days with Saturday Night Live and those funny movies with Gene Wildner.

Yesterday, there was a 10 minute relaxation program.  A wonderful volunteer from Gilda's Club came to my room and showed me simple tips about relaxing to help me heal and sleep better.  There were other programs I noticed during my 5 week stay which included arts, games and yoga.  Patients have the opportunity to meet others also dealing with cancer, family members that come can find support and a sense of calm, knowing they are not the only ones going through this.  Its a pleasure to be able to experience these 'breaks in the day' during a lengthy hospital stay.

Gilda's Club is absolutely free, and anyone dealing with Cancer, being treated currently, or family (including children) are welcome.  It is a great organization, and I am happy to see how much of a difference this organization makes to patients.

Please visit Gilda's Club and see if they offer locations near you.

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.

Day 31 here

I have been here for 31 days.  It isn't fun.  I miss my dog so much, I cry when I think about him.  We have pictures posted everywhere in my room of my little Frank, but it hurts so much to not have him here with me. 

I also am getting sick of all the health insurance paperwork at this point.  I'm not even out of the hospital and the bills are coming in and the insurance requests for information are coming in left and right.

I wish my numbers were better, but the docs keep telling me it can just take time.  I should be happy that my body has started to make its own platelets, which is good.  Hopefully soon the numbers will reflect my bone marrow making the other parts of my blood, too...and that they are healthy.

Its been a tough day but I know there will be good days and bad days.  My skin is super sensitive and peeling everywhere.  Band aids don't even stick to my skin at this point.  The skin just peels off with the band aid.  Hoping tomorrow will be better.

todays numbers

hgb-8.4
plts-143
wbc-2.65
anc-1.7

yesterday my anc was 0.77.  You might think its good that it is going up, but I have been waiting for it to bottom out and go even further lower before it goes up.  it keeps flip flopping around 1.4-1.7 to 0.78/0.77.
I am frustrated.

First post

I am in the hospital and it is day 25 here.  I went to urgent care on Saturday, Feb 2, 2013 thinking I had the flu and noticed a bunch of bruises on my body.  I thought I was getting anemic.
I was wrong.
I found out I had luekemia...apl to be exact.  It took a few days to about a week to confirm the diagnosis, but I have APL.
And now, I am done with my first round of chemo and waiting for my numbers to "bottom out" before they get better. 
I've had my gallbadder removed since I have been here.  I have a rash from medicine all over my body thats itchy and all over.
Its my first time in a hospital other than one trip to the emergency room a few years back. Its tough to imagine that I can be so sick when I felt so healthy all this time.

I need to share my story.