I am a survivor

For the past 25 years, October has been Breast Cancer Awareness month with a pink ribbon as the official symbol.  Pink ribbons make sense since the rose quartz is the official stone for October.  Maybe that’s why October was selected.

Over the years, it has always been thought if you have a family history of breast cancer you will be diagnosed.  This is very true as I know several women who have been diagnosed who have lost a sister, mother, cousin or grandmother from the disease.  People also think if there is no family history, don’t worry, you won’t get it.  But surprisingly, more women with no family history are being diagnosed than women who have a family history.

Case in point.  I have no family history and on September 29, 2006, I was officially diagnosed with breast cancer.  It was a shock, yet it wasn’t.  August before I was diagnosed, I had a dream that I was diagnosed with breast cancer in September and had surgery in October.  That’s exactly what happened, except in the dream I had a double mastectomy.  Luckily I didn’t have to have the double in real life.

Since having breast cancer, I’ve become aware of women who have gone through treatment who would rather not talk about their experience.  They want to act like it never happened.  I don’t think people should be ashamed of having cancer.  Yes, it doesn’t define who you are, but you will always be a survivor and all survivors should be proud to have survived a deadly disease.

Since I don’t mind telling my story, let me take you back to September 2006.  How was my lump found, you ask?  It wasn’t a mammogram or a doctor who discovered my lump; in fact my last mammogram was just 6 months before my diagnosis and it was clear.  I found my lump because on September 15 (yes, when you go through cancer, you do remember dates) I accidentally hit myself in the chest with my car door and my chest muscles were sore due to lifting weights.  I was stretching, rubbing my sore muscles and felt the lump and thought what the heck?

Because of my history (two ovarian cysts removed so far), my doctor immediately sent me for a mammogram.  The lump was so high and so deep it was undetected on the mammogram (hence the all clear 6 months earlier) so I needed an ultrasound.  Immediately following the ultrasound (I wasn’t even off the table) the guy told me I had breast cancer.  He made sure there was a sympathetic woman in the room who was a survivor, but that didn’t matter, I just wanted to get out of there so I could fall apart.  It took forever to get out of that office.  I was shaking so hard, trying to keep it all together, I could hardly write my check.  You see people on TV and in movies being told they have cancer and they seem upset.  But when you actually have someone say “you have cancer,” it knocks the wind out of you.  Your world actually tilts and time stands still.  You think oh my God, I’m going to die; I’m not going to see my daughter walk down the aisle or graduate.  I sat in my car for an hour hyperventilating.  I was so hysterical, when I called my husband, he couldn’t understand me.  He thought I had been in an accident.  I then sat there and called my parents and a couple of my sisters.  They reassured me that the diagnosis wasn’t confirmed until I had the biopsy.

After leaving the imaging place, I got ticked off.  I thought “how dare he tell me I have cancer when all he is doing is looking at a computer screen.”  My doctor should be telling me, not some guy I met for the first time.  Plus, the tissue hadn’t been tested yet.

My surgeon was wonderful.  He got me in right away for the biopsy and called me in a day with the results, even though he said it would take four.  He wanted me to come in that day to go over my options.  The day was September 29 and my friend Karen, came with me, so I would have another set of ears to hear my options.  We set my surgery for October 10.  This is my birthday, and even though people thought I was nuts, I wasn’t going to wait another week and the only thing that was going through my mind was “get it out, get it out, get it out!”  Besides, what better birthday present than to have something poisonous removed from my body.

There were several tests which needed to be done before I could have the surgery.  First I met my medical oncologist, Dr. Maureen Sheehan.  She went through all the tests I needed and recommended a flu shot since my immune system would be depleted during the flu season.  They also needed to make sure the cancer hadn’t spread to another part of my body and if I had markings to indicate if I needed treatment after the chemo.  I had blood drawn, two CT scans, MRI, and a full body PET scan.

With the CT scan, a chemical was shot into my upper arm which was cold going in but then you could feel it going through your body and made it feel like you wet your pants.  Then there was the PET scan.  This is a highly toxic test.  It is housed in a separate trailer from the hospital, the drugs are so toxic.  The drug will immediately go to wherever there is cancer.  While the techs wore special clothing to protect themselves from the chemicals, I was able to wear my regular clothes.  I opted for shorts and a t-shirt.  I was then scanned from chin to knees.  I think I actually fell asleep during the procedure as it was almost an hour and I couldn’t move.

They also tested my heart for a base reading since the strong chemo drugs could possibly damage my heart.  This is why Lance Armstrong did such intensive research on what he was going to receive.  He knew certain drugs used in chemo could damage the lungs and heart which would have ended his racing career.  So when people say he took drugs while racing, as a cancer survivor, I doubt it.  Why after everything he went through would he put drugs in his system which could damage him further, and who knows, could make his cancer come back.

All the tests showed that my tumor was at 2.3 cm (pretty decent size but ended up being 2.6 cm when they removed it), the grade (aggressiveness) was grade 3 which is VERY fast growing, my ER/PR (estrogen/progesterone) and her2neu were both negative, which is a huge plus, and that I was in pre-menopause.  I forgot about that last one.  Having the two negative results were exciting as this means once I was done with treatment, I didn’t have to take anything else.  A lot of women have to take drugs for 3-5 years after they are done.

Going through the Cancer Center, I was glad to hear that a panel of doctors get together and review each case to decide what is the best treatment.  Knowing that, I didn’t feel I needed a second opinion.  The day of my surgery, they were going to first remove a few lymph nodes.  How do they know how many to remove?  Brace yourselves…they take little tiny needles with a blue chemical which they insert around the nipple in four different places.  Then the chemical will go directly to any lymph nodes infected.  Yes it hurts like a son of a gun, but I have a high tolerance for pain so it wasn’t too bad.  The tech was amazed at how well I did.  None of my lymph nodes were infected (yea!) but they still had to remove three to make sure.

When I was leaving the hospital I was telling the nurse how this was benign and I didn’t need any further treatment.  She was looking at me like “Are you nuts lady!”  After surgery I found out someone had the film backwards so I had to go back in again on October 19 to take a little more tissue on one of the sides to make sure they got it all.  My surgeon wanted to make sure they had a large enough margin removed around the tumor to ensure no bad cells were left.  At least they didn’t charge me for the second surgery!

Leading up to my first surgery, I was visualizing smooth edges to my lump so it wouldn’t have “fingers” and go to other parts of my body.  I had people at work who were visualizing little soldiers attacking the tumor or wrapping it in bubble wrap.  Since being diagnosed and the fog had cleared, I had decided it wasn’t going to beat me; I was going to beat it.  So I took the highroad and took a positive spin on things.  I told people this was just a bump in the road and I wouldn’t be going through this if God didn’t think I could handle it.  Not to worry about me, I would be just fine.

One of our departments was having a meeting and someone asked what was up with me.  The department head told them (even though I hadn’t told her what was up) and a friend, who was in the meeting, spoke up and said I was being very positive and don’t you dare be negative around me.  I was glad she spoke up, I was glad she told them if I wanted them to know what was going on, I would tell them.  As you can probably tell, it was a very stressful time at work for me, it was not a good environment and I believe that is part of the reason why I got cancer.  Stress is a big factor in getting cancer and boy was my work environment stressful in a bad way.  Luckily I don’t work there anymore.  I work in a very healthy and positive organization with VERY wonderful people.

The panel of doctors decided I would take two chemo drugs every two weeks, four times.  So that meant four visits to the Cancer Center.  I thought that’s no big deal, getting stuck four times, I can handle it.  No one really encouraged or insisted that I get a port.  Looking back, boy was I dumb.  They didn’t tell me the week between my treatments I would need to have blood drawn to check my numbers.  They didn’t tell me right before I could have a treatment, I needed blood drawn to make sure my numbers were up.  So instead of four sticks, I had close to 15 sticks.  I went in on a Thursday to receive chemo and back again on Friday to receive a neulasta shot which helped my white blood count go up fast so I could have treatments every two weeks.  This was a$7,000 shot.  Now, with knowing all this, take into consideration my veins roll and collapse and they are very twisted.  Oh, and since I had the lymph nodes removed, I can no longer have needles or blood pressure cuffs touch my right arm…EVER, which means ALL needles must go into my left arm for the rest of my life.  This is also the arm where all my chemo treatments occurred.

Before my first treatment, I colored some of the ends of my hair pink since I would be losing it after the second treatment.  My daughter even colored her hair.  (And yes, I got reprimanded by the evil witch at work for coloring my hair.  She had no sensitivity to my situation and the fact I was coloring my hair as an FU to cancer.  See why I needed to get out of there?).  I also asked other cancer survivors for advice on how to handle the treatments.  You can get lots of advice from other survivors.  So I arrived for my first treatment with my book, mp3 player, and snacks.  I arrived at 9 and wasn’t out of there until after 1pm.  Let me tell you something, when they say you will have a metallic taste in your mouth, they aren’t kidding.  I can’t even describe the taste.  It totally distorts how things taste to you, which is probably why I was told not to eat my favorite foods during treatment.  But that taste also lingers for months afterwards.  Didn’t matter anyway, after the first treatment, my nausea medicine wasn’t very strong and I was in bed for a week I was so sick.  Then they put me on a heavy duty drug and I was felt really good two days after my treatments.

I had to constantly put lemon in my water because even water tasted bad.  During treatment the nasty taste in my mouth was so bad I was constantly eating something, sucking on a jolly rancher or chewing gum to disguise the taste or I would have been vomiting the entire time.  One time my husband bought some potato skin chips during treatment, they helped hide the horrible chemo taste.  Bless his heart, he went to Sam’s Club and bought a HUGE box of the chips for me.  But after that one treatment, I couldn’t even look at another bag let alone eat them.

Now let’s go back to where I mentioned not needing a port and about my veins rolling and collapsing.  Something else with getting stuck all those times and receiving chemo, it makes your veins dry up.  The second chemo visit was a little tougher.  It took a couple tries for the nurse to find a vein.  So onto my third chemo visit.  This one was brutal.  It took 1.5 hours, three nurses and six stabs before they were successful.  They actually had to call in a specialist.  The nurses felt horrible and talked about me for days afterwards.  So when I arrived for my fourth and final treatment, no one wanted to do it in fear they would hurt me too much.  So the specialist was called back again and she found a vein right away.

Once I was done with my last treatment on December 21, I had to wait at least two weeks before starting radiation.  I was told with radiation I would have blistering skin, tons of pain and fatigue.  I didn’t have any of this, in fact I started working out again during treatment.  You lie on a big table with a weird machine circling and everyone else is outside the room watching monitors.  Of course radiation is again, highly dangerous.  The doorway to the room could fit an armored tank and the door was over a foot thick.  The techs were awesome!  I saw them every day, first thing in the morning, for 40 visits.  When I was done, I presented them with flowers and cried.  Yes, I was happy to be done with treatment, but also I wasn’t going to see them every day.

My radiation oncologist was amazing!  Dr. Mark Thompson has so much energy; he was practically bouncing off the walls.  I first met him on October 4, before my surgery and didn’t see him again until I was bald and setting up my first radiation treatment.  He came around the corner and said “Hello Mrs. H. how are you!”  I was shocked that after a 30 minute visit almost three months before he remembered my name.  When he finally released me from visits with his department, the entire department came into my exam room to say good-bye.

Through all this, I learned you have to surround yourself with positive people, because negative energy is really going to damage you and it doesn’t matter if it’s a friend, co-worker or family member.  If they bring stress into your life, they need to leave your life.  It’s okay to accept help from someone whether you hate to ask or not.  We had so many meals given to us we from friends and my work, we were still eating it in May, even though I finished treatment March 20.

If you are bald, don’t feel ashamed, take that scarf or hat off in public, yes people will stare, but that’s their problem, not yours.  I got plenty of stares walking around Target and eating at restaurants.  I think I scared the UPS guy once when I answered the door.  I started my new job when I was going through radiation and halfway through my second day I took my hat off and never put it back on.

One of my close male friends has told me several times I was very beautiful bald.  He also has said that I’m one of the bravest people he knows after watching me go through treatment and winning.  I try to remind myself this when I’m struggling through the day with something trivial.

It’s also okay to talk about what you have been through.  People really do want to know, but are afraid to ask.  Don’t worry, ask away, as you can see, I will tell you anything you want to know.  You hear sisterhood thrown around a lot with breast cancer survivors.  It IS a sisterhood because one woman is detected with breast cancer every three minutes and one woman will die from breast cancer every 13 minutes in the United States.  So the more we talk amongst ourselves the more we help each other.

I encourage every woman to also join the Army of Women Organization.  This organization is working to find a cure for breast cancer.  Avon and Dr. Susan Love, the first doctor to work exclusively with breast cancer, are working with scientists on different test studies.  This is a free membership.  The only thing they ask of you, if you qualify for a study to please consider joining the study so they can learn more and put an end to breast cancer.

Until next time…enjoy the view from your passenger seat.


9 thoughts on “I am a survivor

  1. I never knew the full extent of what you went through until now. What an incredible testimony! I have tears in my eyes right now. I am so grateful and thankful that you are my sister and you are doing well today. Love you always.

  2. I won’t ever forget that phone call. I will say, I think that’s the last time I heard despair in your voice when it came to fighting the cancer. You are a winner! I had a fabulous weekend! Love you!

  3. “….it knocks the wind out of you. Your world actually tilts and time stands still.” Yes, yes, yes….this was my experience exactly. Best description I have seen!!! We are strong, we ARE survivors. Many hugs to you, dear friend…. M 🙂

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