The Cost of Cancer

bag of money

It’s been almost 5 years since I was diagnosed with breast cancer and pretty much everything has healed – everything except my wallet.  Cancer isn’t just devastating physically and emotionally, but it can be financially as well.  I was fortunate to have health insurance and short term disability benefits through my job, but amazingly, I’m still paying off some bills from years ago.  I can still picture the piles of statements in my living room from doctors, hospitals and insurance companies.  I felt like I was drowning in a sea of debt.  I was worried about my health, about my family, about my future, and about how I was going to pay for it all. One day, I actually burst into tears when I was told I qualified for a $100 gas card to help with the cost of driving to and from treatment.  Everything eventually worked itself out and I’ve learned not to get totally freaked out about medical expenses now.  They are a fact of life – my life, especially – and there are people and organizations out there that can help, but you (or someone advocating on your behalf) need to devote a good amount of time to research.  Talk to your doctors about patient assistance programs, talk to the hospital about payment plans, look online for local and national organizations that assist with financial resources for cancer patients, become intimately familiar with your insurance plan and benefits and make informed choices regarding your treatment. In my resource section, I have listed some organizations that I’ve had some experience with and may be able to help you or your loved ones(s).  There’s also a great website called Cancer.net that explores issues and questions regarding the costs associated with a cancer diagnosis and treatment, please visit that page at http://www.cancer.net/navigating-cancer-care/financial-considerations/understanding-costs-related-cancer-care.

So, let me strongly encourage you to ask for help, accept help, and pass it along by helping others when you have the chance.  It is not a sign of weakness to ask for assistance, especially when you’re fighting for your life or the life of a loved one.  Be well and be informed – help might be just waiting and hoping that you ask for it.

 

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A Prayer for the Newly Diagnosed (Inspired by Bill) – part 2

May your fears be made less

by the love of

family and friends

May the healers who

treat you

be skilled as well as kind

May you be able to

ask for and accept help

without shame or regret

May you have guardian angels

lighting your way

in the darkest of times

And may God bless you

with courage

strength

and faith

to face

whatever lies

ahead

Amen.

I’m reposting this in honor of a good friend and co-worker of mine who was just diagnosed with breast cancer.  According to the Susan G. Komen website, every 19 seconds, somewhere around the world, a woman is diagnosed with breast cancer; in the U.S. a case of breast cancer is diagnosed among women every two minutes; one in eight women in the U.S. will be diagnosed with breast cancer in her lifetime.  I am one of those women and blessed to be one of the 2.9 million breast cancer survivors alive today in the U.S.

I originally wrote this when my friend Bill was diagnosed with stomach cancer.  He is still fighting it and going through treatment.  Please continue to pray for him and all those touched by cancer around the world.

For more information on Susan G. Komen or the statistics in the above post, please visit http://ww5.komen.org/uploadedfiles/content/aboutus/mediacenter-2/bc%20facts%20-%20082712.pdf

The Write Stuff : 30 in 30

Writing has done many things for me – it helped me cope with a difficult childhood illness, helped me earn my degrees, helped me put on paper the feelings I could not speak out loud, and it helped get me through cancer treatment.  It helps me now deal with Systemic Lupus and the prospect of my cancer returning.  It gives me, and hopefully those who read my musings, hope for the future and a way to make some sense out of the senseless things that happen.  There was a time when I guarded my writing like an overprotective parent, for fear that people would see the “real me” and run away in horror.  But, when I finally did take the risk of showing my work to others, they didn’t run – it actually brought us closer.  Little by little, I shared more of my writings with others and secretly dreamed of being a “Writer” with a capital W.  But, it wasn’t until I was diagnosed with and survived breast cancer that I was comfortable sharing my most personal insights with perfect strangers. I kept a notebook during and after treatment; writing about my thoughts and fears, as well as the surprisingly funny and good times, helped me deal with a terrifying situation.  So, I decided to share my writing with a larger audience, and started this blog.  My intentions were to have an outlet for my feelings/experiences and, hopefully, provide comfort, humor, and support to others.

Now, I’m taking another step on my writing journey and working towards becoming a Certified Journal Facilitator.  My long-term goal is to be able to teach others how to use writing as a means of expression and healing.  My short-term goal is to become more disciplined about my writing and incorporate it into my daily routine.  So, I’ve decided that I will challenge myself to write and post something every day for the next 30 days.  I would like to invite others reading this to suggest topics for me to write about, as well.  Let’s see if I’ve got the “write stuff” – wish me luck!

P.S.  I’m counting this post as #1 – only 29 more to go!

Life without Parole

I can still remember – vividly – standing in a small room with my partner, surrounded by images of my ultrasounds and mammograms.  It was almost futuristic, with computers and screens covering every part of the darkened room.  I remember looking at those screens and seeing multiple tumors and spots – I was stunned and absolutely terrified. The Radiologist said, “5 years ago, this could have been a death sentence.”  Whoa, what?!  I wanted to scream.  He went on to explain that there had been many advances in the treatment of breast cancer recently and I had a good shot at being ok. Well, after hearing “death sentence”, pretty much everything else he said went in one ear and out the other at warp speed. Thankfully, a year later, my treatment was successful and I was granted a pardon.  My death sentence was commuted to Life, albeit, Life without Parole.  I say that because I will always be somewhat of a prisoner.  I’m still within that crucial 5 year timeframe when the chances of a recurrence are greatest, and, I won’t lie, I think about it every day.  Even though I try to keep a positive attitude and not let the fear rule me, I will be fearful of a recurrence for the rest of my life.  But, I’ve learned that a little fear can actually be a good thing.  It can be a motivator.  Whenever I start to get complacent about exercising, eating healthy, or just taking good care of myself, I think of that day in the dark room and my fear whispers to me, “never forget.”  My fear gets me to the gym and it gets me to take my meds.  It gets me to my follow up appointments and to eat things like maca root and chia seeds.  I’m trying to make fear my new friend.  So, although I may never fully escape my sentence of Life without Parole, I’ve decided to accept that and really focus on the Life part. Because, that’s what we all should really be afraid of – missing out on making the most of Life and the second chances we are given. That, my friends, would be the real death sentence.

The Chemo Room

When I was first diagnosed with Breast Cancer, I went for a consult at a fancy clinic attached to one of the major hospitals here in South Florida.  I was terrified.  I remember sitting in the car, literally shaking and not wanting to go in.  I had all these visions in my head of a waiting room filled with sad, sick women, with scarves on their heads and no hope in their eyes.  When I got in there, I was pleasantly surprised.  The waiting room was decorated in warm, soothing colors, and it didn’t feel as depressing as I had imagined.  After meeting with the Oncologist, who was very young, but whom I liked, I was given a tour of the rest of the facility.  They had a mini-spa for massages and facials, a salon for trying on wigs, and, of course, the chemo room.  The chemo room was a large space, with chairs set up behind curtains and flat screen TV’s attached to the chairs.  I saw women hooked up to IV’s, most with a family member or friend sitting with them, but no one was talking or interacting. I left with the plan that I would get chemo once a week, for about an hour, starting with one medication, then switching to another after about 8 weeks.  The whole process would take about 16 weeks.  As news spread of my diagnosis, I was encouraged to get a second opinion.  The name of one particular doctor kept popping up as highly recommended.  That doctor was Dr. Elizabeth Tan-Chiu, and I firmly believe she, and her chemo room, saved my life – although I almost didn’t give them the chance.

When I first walked into Dr. Tan-Chiu’s office, I was disappointed. It was a far cry from the comforts and high-tech amenities they had at the first clinic I went to.  The waiting room was small and white, with no pictures on the wall or anything decorative. I started to have my doubts.  When they showed me the chemo room, I almost turned around and left.  It was a large room, freezing cold, with several women sitting in recliners, hooked up to IV’s and covered in blankets.  The chemo nurse introduced me and everyone said hello and gave me words of encouragement.  The nurse, Cathy, explained that the chemo room was also a therapy room of sorts.  This is where women came to be healed and to help heal each other.  She said I would get to know these ladies very well throughout my treatment.  At that point in time, I was horrified.  I didn’t want to be out in the open where anyone could see everything happening to me and where I would actually have to talk to people.  I just wanted to get my chemo and be done with it.  Then, I met with Dr. Tan-Chiu and she changed my mind.  She had a different, more aggressive treatment plan and didn’t sugarcoat my situation, the way I realized my first Oncologist had.  After some discussion with my partner, I decided to pursue treatment with Dr. Tan-Chiu.  It was the best decision I ever made.  Dr. Tan-Chiu is amazing, and that chemo room, the one that so horrified me, became a safe haven for me.  I found strength, love, hope and happiness in that room.  Things I never imagined when I peeked in that first day.  I spent a lot of time there – some days from 9 in the morning until they closed after 5 in the evening.  We did become a support group for each other. The ladies I had the honor of sharing that room with gave me inspiration, information, support, and acceptance.  I looked forward to being there and seeing everyone.  Don’t get me wrong, it wasn’t all hugs and happiness.  There were tough times and tears, scary moments, painful moments, and heartbreaking moments.  Crazy as it may sound, I miss it sometimes.  So, here’s to the room where I was healed, and most importantly, here’s to the ladies who healed each other.

Zen and the art of Medication Management

I have been on one medication or another for most of my life.  When I was a teenager, I was diagnosed with Juvenile Rheumatoid Arthritis. What followed were pills, pain killers, shots, and side effects.  And thus began my love/hate relationship with meds.  Medication has literally saved my life, but it has also made my life miserable at times.  Since my teenage years, I have been diagnosed with 2 very serious illnesses – Systemic Lupus and Breast Cancer.  I’m blessed to be able to say that I am cancer free now, but I will have to deal with Lupus for the rest of my (hopefully long) life. I could go on and on about other side effects I’ve experienced, but that would take up way too much space. So, here are just a few highlights: Taking pain killers post-surgery and for chronic pain gave me constipation, the steroids for chemo made me shake like a leaf, gave me insomnia and made my face as red as Rudolph’s shiny nose.  The anti-inflammatories and steroids for Lupus upset my stomach and made me gain weight.  Post-cancer medication made me cry all the time and made my legs swollen and too tender to walk.  And, probably the most “fun” side effect from chemo was becoming anemic.  That was horrible.  Some side effects I’ve had to just put up with, while others I was able to address with my doctors, who made adjustments and fixed the problems.  Now, after a long back and forth between my Rheumatologist and my Oncologist, I have added Methotrexate to my other Lupus medication.  Initially, I didn’t want to take it, because I was sick of being on so much medication and I couldn’t fathom adding another one. But I became desperate when the pain and fatigue became intolerable. I had a rough start with it, getting nauseous, headaches, and light-headed, but have since built up a tolerance.  It seems to be working, now that I am able to take the recommended therapeutic dose. But, it was a struggle to get there.  My doctors disagreed about putting me on it; my Oncologist was worried about adding a chemotherapy drug to my medicine regimen after just finishing chemo for cancer, while my Rheumatologist was concerned about my skyrocketing labs that indicated increasing disease activity.  Finally, after trying steroids for almost a year, my doctors came to an agreement and started me on the Methotrexate.  I feel the difference and am grateful to be taking it.  However, I take so many meds now, that sometimes I feel hung over.  I’m trying to find the right times of the day to take all that I need to so my little body doesn’t get hit with all the side effects at once.  Some make me drowsy, some make me achy, some make me cranky, some make me pudgy.  Still, I’ll have to be on medication for the rest of  my life and will have to continue to practice the fine art of medication management to be able to enjoy my life, side-effects and all.

“You’re so lucky, I’ve always wanted a boob job” – and other awkward things people have said to me

Some people don’t know what to say when you tell them you have cancer – and some people say the darndest things.  Here’s a list of some of my favorites:

  • “You’re so lucky, I’ve always wanted a boob job” – this one has to be my favorite.  I can’t tell you how many women said that, or some variation of that, when I told them I had breast cancer.  How crazy is it that women are so insecure about the size of their “girls” that they would consider me “lucky” to be getting a mastectomy and implants?
  • Keeping with the implants theme – when I told my plastic surgeon I wanted to stay the same size and not go bigger after my mastectomy, he seemed shocked and asked me several times if I was sure. When I said, yes, I just wanted to look like my old self, he said, “Ok, but I’ll have to special order the implants – we don’t carry them that small here.”  Ouch.
  • “It’s not the cancer that kills you, it’s the treatments” – I heard this one a few times and, I must say, it was not very comforting.
  • “I prefer your hair longer” – this one I hear a lot now from people that I don’t know very well, haven’t seen in a while, and don’t know that I had cancer. It’s always a little awkward because I don’t want to have to say all the time, “I didn’t cut it, I had cancer” – it’s kind of a downer and a bit of a conversation killer.
  • “But you look healthy – your cheeks are nice and rosey” – I got that a few times when I was going through chemo. It was actually the steroids making my face break out in a rash, but people meant well.
  • “Ooh, I wanna see!” – this was said to me by a new co-worker whom I had just met after being out for 6 months. When she found out I’d had a mastectomy and reconsrtuctive surgery, she boldly asked if she could see my “new addition”. Granted, I had become quite used to taking off my shirt and showing my chest to total strangers, but I was pretty sure they all had some sort of medical degree.
  • And, finally, the ever so encouraging, “You have cancer? My Grandmother had cancer. She died.” I know it’s hard sometimes to know what to say to someone with cancer, but listing the people you know who have died from it is definitley something to keep to yourself.

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