Friday, April 12, 2013

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 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!

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.


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

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.

Thursday, April 11, 2013

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  I did a search for other books that are inspirational, and this one is on my list--- I will be a cancer survivor!!

Wednesday, April 10, 2013

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.

Tuesday, April 9, 2013

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 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.