Daily Digest for Friday May 31st, 2013

I got the results today of my yearly mammogram and ultrasound – thankfully, both were negative.  As I breathe a sigh of relief, I can’t help but think of all the women who heard different news today.  I read somewhere that 489 women are diagnosed with breast cancer each day.  Unbelievable.  So, right now I’m thanking God for giving me another cancer-free day and asking Him to watch over all of those who are just starting their struggle. 

 

Feeling Good is a Full-Time Job

I’ve always had health issues. Let’s just say my immune system and I have never been on the best of terms.  At the age of 13, a swollen, painful ankle turned into a surprising diagnosis of Juvenile Rheumatoid Arthritis.  I had been an athlete up until then, with dreams of possibly getting a college scholarship in softball or maybe basketball.  That all vanished.  I struggled for years with chronic pain and depression.  All through high school and my college years, I had to find ways to deal with the pain, fatigue, and bewilderment of my peers, who thought I was joking when I told them I had arthritis. The Juvenile Rheumatoid Arthritis eventually went into remission, but I have had chronic pain ever since. When I was in my early 40’s, I finally got a diagnosis of Systemic Lupus, after having weird symptoms and worsening pain for years. Lupus is sometimes called “the cruel mystery”, because it can take years to diagnose and often people are given incorrect diagnoses along the way. I was told I had fibromyalgia, rosacea, bursitis, tendonitis, osteoarthritis, and it’s all in my head-itis. I was relieved when I finally got the correct diagnosis and was put on meds that would slow the progression of the disease and decrease the pain. When I found a lump in my breast a few years later, I thought certainly I had been through enough medically and it couldn’t possibly be cancer. Boy, was I wrong. I got through that, thanks in part to some of the lessons I learned earlier in my life about separating my emotional from my physical well-being. Now, I’m 46 years old, post-menopausal (thanks to some bad ovaries and chemotherapy), still have Lupus, and am a cancer survivor. I’m tired from the minute I wake up to the time I go to bed. Feeling good has turned into a full-time job for me. I have to make sure I’m taking my meds (whose side effects include pain and fatigue – oh, joy!), eating right, exercising, and following up with my various doctors. I make a special protein drink every morning with fresh fruit and almond milk, try to stretch each morning, and attempt to get to the gym each week to keep active and decrease the risk of cancer recurrence. I have to have labwork done every few months to monitor my meds and to make sure the Lupus isn’t progressing and the cancer isn’t back. I take supplements and have stopped buying foods that are processed or have too many ingredients I can’t pronounce. I try, I really do, to drink water throughout the day to stay hydrated and healthy. I have an actual full-time job, as well as two small children and a partner. I guess my immune system and I will never be friends, but I’m hoping, with all the work I’m doing, we can at least be on speaking terms.

Pain

Deep in the night

I lie awake

Praying for sleep to

overcome me

But I know my Pain

will not allow it

It is the Controller now

It takes over my body

It takes over my mind

Until I can’t remember

when It started

Or when I was

without

It

My Fear

Some nights

it whispers to me

in my dreams

a thing nameless and faceless

that chills my soul

Some days it

screams

like a wounded animal

difficult to quiet

 impossible to ignore

My fear

It’s always there

hiding in my bones

and flowing through my veins        

My life

threatened by my own

body

Spared by the grace

Of God –

At least,

my fear whispers,

for now

Progression

Pain

intense, continual

frightening, maddening, depressing, crushing

pills, needles, doctors, prayers

easier, bearable

Relief

How It All Started – Part 2: The Waiting Game

After first finding the lumps in my breast and under my arm, things seemed to happen very quickly, yet very slowly, all at the same time.  I had to wait for my mammogram appointment, then I had to wait for the radiologist to read the films, then I had to wait for them to compare the films with the ultrasound….and on and on.  It seemed like every time I had a test or was waiting for a result, it fell over a weekend or a holiday, so the waiting was prolonged.  I finally was told that I needed a biopsy.  I didn’t even know who to call for such a thing.  I called my primary doctor, who recommended someone.  Their office said they could give me an appointment in 3 weeks – 3 weeks!  What if I was dying of cancer, was what my mind was screaming.  I called back my primary and got another referral. This doctor could see me in a week to see if I actually needed a biopsy (which I thought had already been established).  When I went for the visit, they couldn’t read the discs I had brought from the imaging center because of some computer non-compatibility issue but did their own ultrasound.  It was determined that, yes, I did need a biopsy.  It was scheduled for the following week when, bad timing, my partner had to go out of town for a conference.  I asked my sister-in-law to go with me.  I was quietly terrified.

I remember laying on the table waiting for my biopsy. Every cell in my body was screaming for me to get up off the table and run out of the building. My cells knew something I didn’t.  The procedure did not go smoothly and the doctor needed to give me 3 additional shots to numb me after he had started and to take care of the pain.  I remember feeling him actually ripping through my skin and tissue.  I was told at a later biopsy that I never should have felt any of that.  I made it through the procedure and tried not to think too much about the possible results for the next few days.  Fortunately, I didn’t have to wait long.  My follow up appointment was 3 days later.  My partner was still out of town, so I once again brought my sister-in-law with me.  We waited and waited until there was no one left in the waiting room.  We were the last to be called in.  When the doctor finally came in, he said the words I had been dreading – “unfortunately your biopsy showed cancer cells” and then launched into a very confusing discussion about radiation, ports, chemotherapy and surgery.  He recommended I have a lumpectomy and then arrange for further tests like an MRI, PET scan, etc.  I thought the tests should be first, but I was too shocked to argue.  I agreed to the lumpectomy and was told it was too late to schedule anything since it was after 5pm and that the doctor’s office would call me the next day with arrangements.  This time, the waiting worked in my favor.  The doctor never called me the next day and, honestly, I was too scared to call them.  I finally worked up the nerve to call them the following day, but the scheduler was not available and I had to leave a message.  They then closed early later that day because it was Good Friday, and no one ever called me back.  That gave me time to think over the weekend and talk to some friends to get some advice.  I didn’t feel comfortable with how things were progressing and thought the lumpectomy was happening too fast.  That Monday, I took the initiative and called a Cancer Center at a local hospital and asked them what the normal procedure was after having a biopsy that showed cancer cells.  They told me to fax over my pathology report and they reviewed it for me. They recommended I come in and speak with an Oncologist first before I did anything else. I called back my surgeon and told them I would not be having the lumpectomy after all.  As it turned out, that was one of the best decisions I made, because I had multiple tumors and a lumpectomy would not have been the appropriate treatment option for me.  This was just the beginning of a very long and scary journey, which I still couldn’t believe was happening to me.

Next, Part 3 – Second Opinions and Sea Cucumbers

 

 

 

 

How it all Started – Part 1

 

I remember it so vividly – I was at work on March 31st, 2011, and felt a pain in my left breast when I turned to work on my computer. The pain itself wasn’t so unusual, my chest used to get sore prior to my period.  I didn’t think too much about it.  When I went home and was getting changed for bed, I was still feeling the pain, so I instinctively touched where it hurt, and to my shock, I felt a lump.  It was the size of a big marble, and I had no idea when it had sprung up.  I was worried, but secretly hoped that I would wake up in the morning and it would magically be gone. I didn’t mention it to my partner.

The next morning, I woke to find that the lump had not magically disappeared.  This time, I did mention it to my partner and decided that I should go my doctor and check it out that day.  I was concerned, but didn’t want to think the worst.  I couldn’t get in to see my doctor until that afternoon, and, when I did, they all assured me that I shouldn’t worry, it was probably nothing.  My doctor said that, the nurse, even the female physician’s assistant who examined me and felt the lump.  They all said not to worry, except for the ultrasound technician and her supervisor, who were quite alarmed when they did the scan.  “You’ve never noticed these before?” the supervisor asked in a very ominous tone.  These?!  “Yes, there’s a lump here and another one here”.  Oh crap, I thought.  No, I had never noticed “them” before.  He asked me, almost accusingly I thought, when was the last time I had a mammogram and really, had I never noticed them before?  Ok, time to worry.  It was almost closing time for the office and the ultrasound supervisor told me not to leave the building without the disc of my ultrasound.  He told his staff to make sure I didn’t leave without the disc of my ultrasound. He definitely sounded worried.  On my way out, my doctor told me again, not to worry, that most likely they were benign cysts that were a result of bumping into things (with my breasts, really?)  or picking up the kids and having them bump into me (more plausible, I thought).  I was sent off to do a mammogram.  Of course, it was a Thursday when this happened and I couldn’t get an appointment until the following week, so I had all weekend to freak out about what was possibly happening.  Over that weekend, I felt another lump under my arm, and I knew something was really, really wrong. 

Next, Part 2 – The Waiting Game

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