STORIES

The 6 Letter Word That I Hate

Cancer.

I am sure that this word doesn’t invoke feelings of happiness in anyone, even if the end result was positive.  The diagnosis, the journey and the aftermath (regardless of outcome) is always shocking, uncertain and scarring.

Today, cancer is an all too common word and one that is thrown around more and more.  The causes are all around us and within us.  The main generalized causes are: genetics, age, (bad) habits, family history, health conditions, diet, physical activity and environment.  Some things (habits, diet) we can control, others (genes) we cannot.

In 2017, there were over 1.6 million newly diagnosed cancer cases, with over 600 thousand deaths.  That is both frightening, and hopeful.  There are many new and advanced treatments for cancer with positive advances in research daily.  The estimation of living with cancer successfully is set to rise to 19 million by 2024.

That all being said, I still hate the word and everything negative that it can possibly conjure up.  When you hear that diagnosis, it immediately leaves you empty and scared.  I have never had a personal diagnosis of cancer but I have been personally affected by it, and still am being affected by it, in life changing and dramatic ways.  Although, I had already lost grandparents and extended family members to cancer, I never truly understood the depths of it’s desperation until August 2002.

It always starts out insidious, as cancer does.  My dad had called me a couple times over the course of several months complaining that his back hurt.  He had fallen down a couple steps and had landed on his back and it was continuing to bother him.  I encouraged him to be seen but that it was probably that he had tweaked his back in such a way that possibly he had ruptured a disk when he fell.  Of course, he being a tough Swede didn’t go into the doctor and figured it would just heal in time.  I went home to Marshall for a weekend sometime after that and was shocked to see that dad looked thin and somewhat pale (he was always so healthy and robust), and I commented that to him.  We attributed it to him working a lot, and I told him that he needed to take care of himself and slow down a bit (he was 63 then).  I returned home to Rochester and a few days later my mom called and said that she was really worried about dad.  She said that dad was still laying in bed (it was almost 10a) and that he didn’t even get up to bring my youngest brother to school.  If you knew my dad at all, he was up early and gone for the day by the time we were up, always.  This was alarming to me and somehow, I knew deep down something was dreadfully wrong.

I called my older brother Randy who lives in that area and told him I was very worried and asked him to immediately bring dad down to me so that he could be seen at Mayo Clinic, where I work.  He did and that would start one of the most desperate times I ever remember in my life.  The x-ray showing a mass on his lung (he never smoked).  The bronchoscopy confirming it was an aggressive cancer (adenocarcinoma).  The PETSCAN, yes the PETSCAN.  The worst day to that point.  I think somehow you are still hopeful but when my little sister Ally and I (who were sitting with our parents in the oncology office) saw the results, we simply grabbed each other’s hand quietly for strength, and I know that my heart sunk (as I know Ally’s did as well).  My parents, not being medically literate couldn’t comprehend the full impact as Ally and I did in the minutes of viewing the scan results.

I had to get out of the room, so I said I was going to the bathroom.  Ally said she had to go too and we went down the hall and found an empty restroom and closed the door, grabbed each other and sobbed.  We knew there was no way dad would survive this cancer.

We did chemo and all the things that we could think of (holistic medication, diet) but of course, nothing could beat back a cancer that had infiltrated almost every major bone and organ of my father.  6 months later, we would bury our dad on Valentines Day 2003.

My father died bewildered and defeated.  To this day, I can’t hardly talk about it and thinking about it grips my heart in such a way that I think it will burst.  I hate cancer.

I believe that should be enough, losing one person to the 6 letter word I hate, but it wasn’t.

In late 2003, my mother would be diagnosed with breast cancer.  She opted for a lumpectomy and they felt that they had gotten all of the cancer out (clean margins).  We moved forward and life went on.  However, in August 2005 things began to unfold that would again alter our lives forever.

To be honest, the events are a bit blurry but what I remember is mom being diagnosed with bronchitis.  She sounded and looked far worse than a typical bronchitis to me but mom was both stubborn, and probably too scared to want to dig further than what I wanted her to.  Mom had been a life long smoker and so I feared that there could be more to what was going on.  She ignored our requests that they do some imaging of her chest (Roxy, Ally and I are nurses, and remember Dawn is the WebMD nurse).  She continued on with the “bronchitis” for a few weeks.  (HERE is my soapbox about bronchitis-it is not a PRIMARY diagnosis, bronchitis is a result of SOMETHING else going on, always!)

Finally, my sister Roxy called me and said that she was really concerned (Roxy lived closer to mom), that she had been to mom’s and that she looked really rough.  I hadn’t talked to mom for a few days at that point.  I immediately called mom and she was so short of breath she could barely talk to me.  I immediately left for home.  When I got there I couldn’t believe my eyes.  Mom looked pale, she was sweating and she could barely breathe.  I told her we had to go to the emergency room right away.  She refused to go.  This was my mother, she never went to the doctor because she always feared the unknown and anything scary.  I pleaded, she still refused.  It was late afternoon and I kept begging her to go.  I always had to choose my words carefully with mom because she would get scared too easily so at first I couldn’t tell her that I was worried she was just gonna die at home.  Finally, I gave up trying to smooth it over to her and told her exactly that.  She finally relented that if she wasn’t better by morning, we could go to the ER then.   It was a long night, and I remember thinking she wouldn’t make it through it.  Morning came, and she still refused to go.  So, I told her I was calling my brother Lonny who was crazy enough to drag her kicking and screaming to the ER.  She knew then I was serious and she knew Lonny would, and so she relented.

The rest unfolded fast.  They quickly moved her from Marshall to a larger hospital in Sioux Falls.   She was placed in an ICU where they put in chest tubes and drained off over 2 liters of fluid from her lung.  She was drowning.  The reason for the fluid, lung cancer (which we all had feared).  She stayed in the hospital for several days and then home with chemo treatments.  In time, she regained her strength and things looked promising.  However, mom being mom she didn’t want the full body scan done (I think that she remembered that whole scene with dad’s PETSCAN).  So, we never quite knew what we were actually dealing with.  Still, her lung tumor shrank and we were hopeful.

During this time, I would make the 4 hour trip back and forth weekly to Sioux Falls to help my sister Dawn with my mom (mom wanted to keep her care at Sioux Falls).  My sister Dawn had recently had a baby and had her hands full with 3 small children.  It was May 2006 and I was in Sioux Falls to help with mom when I noticed some odd things about her.  She would fall easy and she would sort of drag her left foot.  We took her back into the hospital and it was then that they discovered that she had tumors in her brain.

This would be the start of the decline for mom.  We did do radiation to try to shrink the tumors but she deteriorated rapidly.  Just a few short weeks after finding the brain tumor, we lost mom, it was June 2006.  Mom left us a little differently than dad though.  She had accepted her situation and her death seemed more calm, like she was waiting for it.  Regardless, I hate cancer.

Dad holding Roxy and Mom holding Lonny.

Last family pic before we lost dad.

This should be enough, but it would not be.

In late 2012, my husband Bruce started with some insidious symptoms, mostly swelling of his ankles.  They have a significant amount of heart disease in his family, and so immediately I figured it was something to do with that.  We made an appointment with our primary, who after some very thorough assessing and digging found that we were dealing with something very different.

In early 2013, it would be determined that Bruce had multiple myeloma.  Honestly, I wasn’t even sure what it was, other than I knew it was a type of cancer.  So the research began:  multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell.  Plasma cells help you fight infections by making antibodies that recognize and attack germs.  Multiple Myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells.  Rather than produce helpful antibodies, the cancer cells produce abnormal proteins that can cause complications.  How do you get it?  There is a possible link with MGUS, increasing age (Bruce was just 46 when he was diagnosed), black (he’s not), male (that he is), family history of multiple myeloma (none).  So essentially, his is random.

According to the National Cancer Institute, 38.4% of men and women will be diagnosed with cancer at some point in their lives.  That’s an astounding figure.

Bruce started treatment almost immediately with chemo to knock the cancer back enough so that they could harvest from his own bone marrow for a stem cell transplant (they harvest the healthy cells).  Once, Bruce was at the point where chemo plateaued, they harvested and then Bruce had his bone marrow transplant in May 2014.  This would put him into complete remission.  YAY!  Finally, a small win! Take that cancer!

Things went well until January of this year when Bruce was hospitalized with pneumonia.  The thing with multiple myeloma is that it causes many secondary infections, and one of those is commonly pneumonia.  We were not surprised when they told us that his cancer had returned.  Soon after, he started (once again) with chemo and they told us that things had changed in the short time since he had been initially diagnosed and treated (the first go-round).  Now, they would continually treat him with chemo, hoping for complete remission from the chemo.  If that wouldn’t work, then they would look at a second bone marrow transplant (they had initially harvested enough of Bruce’s bone marrow for 3 stem cell transplants).  They consider multiple myeloma now as more of a “chronic illness” and treat it chronically (much as you would say, diabetes).

As I said, multiple myeloma (like many cancers) offer opportunistic infections a chance to grow in immunosuppressed individuals.  That’s where we are still at today.  Bruce’s pneumonia has been lingering since January.  It has unfortunately stopped the chemo treatments until we can conquer this infection (obviously he needs to get rid of the pneumonia so it doesn’t worsen and chemo will only suppress him further).

Today, I am sitting in the hospital, writing this, waiting for him to get back from his bronchoscopy (to determine exactly why we can’t beat this pneumonia down).

Last night, my older son Darek picked up our younger son Darien from the airport (Dari just got in from seeing his girlfriend in CA) and they came straight here.  We sat here all evening, watching TV as Bruce slept (they had given him 50mg Benadryl for a reaction to an antibiotic) as a family.  My heart broke as I watched my boys, sitting here so stoically.  I am sad that this is their life at their young ages.

I am even more sad for Bruce.  I am so used to this life and I am so used to the hospital (it is where I work) and how each of these things plays out and all the procedures that are needed.  I knew that I would have to wait here in the room while he went for his test.  I prepared Bruce for that and he said he knew that.  As they came to get him, and though he was stoic as they wheeled him away, I could tell that he would’ve like me along.  It is always in those situations, when you’re alone and void of family that your mind can race.  I waved him off and said “see you in a few”, tying to keep it light.

I don’t know what lay ahead, none of us do.  I only know that what we can do as a family is cherish each minute and enjoy each day (even though some days are really not enjoyable, like today).  Earlier when I got here Bruce was watching Family Guy on his phone and laughing (he loves that kind of “stupid” humor, I call it that anyway) and it was nice to see him laugh.  His humor has always been one of the things that I have always loved most about him.  I don’t know the next step or what tomorrow will bring but what I do know is that I still hate cancer.

But here’s the deal.  I do hate that word and everything it brings with it.  However, I am working on not letting it define us.  I am trying to find the positivity in the journey.  I am looking for the things that we can be grateful for!  Yes, we are in the hospital and let’s be honest, this sucks, mostly for Bruce!  But throughout, this man has had an outpouring of love and support!  Our family and friends are continually checking in and asking what they can do.  This man is loved!  We are loved.  If that doesn’t give someone strength, I don’t know what does.  It gives me strength, I know that.

“You may not control all the events that happen to you, but you can decide not to be reduced by them.” ~Maya Angelou

If you have cancer or know someone that does, there are so many great places to find love and support.  I am including one site where you can blog (along with others) any experiences you want to share.  It’s like a group blog and it’s genius.  Blog for a Cure gives you a voice to share your experience.

xoxo & understanding

 

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