Tuesday, February 7, 2017

The Vicious Journey

I buried my mother last week.  Somehow, it doesn’t seem real.  I can’t believe she’s gone… so soon.  Cancer took her.

Rewind six months or so.  She started having mobility issues.  She needed assistance going up and down the steps and with getting her socks and shoes on and off.  Sciatica shot pain from her big toe to her hip and back again.  Tylenol helped ease the pain.

Then, it did nothing for the pain.  If you suggested she go see a doctor, she balked.  The pain made her irritable and affected some of her thinking.  Eventually, she sequestered herself to her two room bedroom suite where she had her bed, a couch and chair, a tv, and the bathroom.  Her bathroom going became more frequent.  She would get up every hour to go and then spend about a half hour there.

In November, she no longer slept in the bed as it was too far from the bathroom.  She slept in the chair closest to the door.  We exchanged the bed and sitting rooms so she did not have to walk as far.

My brother, father, and I would run up and down the stairs bringing up meals and the like.  I lost a fair amount of weight doing all that.  And worrying about her.  As her mental state and appetite waned, we discussed what to do.

Monday night during Thanksgiving week, the decision was made for us.  My mom had gone to the bathroom and my dad and I had trouble holding her up and helping her walk to her chair.  Blood filled the toilet and elsewhere.  We laid her on the carpeted floor right outside the bathroom door.  My brother dialed 9-1-1.

I knelt next to my mom, telling her that she had to go to hospital.  She didn’t want to go.  Within minutes, two EMTs entered the bedroom.  I told her that those nice men were going to take her to the emergency room and we’d be right behind her.

As they strapped her to the stretcher, I put on some shoes and a coat.  We followed the ambulance in the car.  This is a small town.  No one was out that late at night.  The hospital is only blocks away.

It was 1:30 in the morning and I sat in the ER waiting room next to my brother in an old sweatshirt, too big jeans, and the first coat I found.  When my dad came out of the ER, we helped him sign her in at registration.  Moments later, the doctor came to find us.  Although the waiting room was empty, he brought us to a private room.

The ER doctor told us that she had lost a lot of blood.  Her hemoglobin was a 2.  Normal women are around 12.  He gave her blood and called for a helicopter to take her to the city.  We followed him back to the curtained area where two helicopter nurses readied her for her flight.  After watching them work, we told her that she was going on a flight and that we’d see her when we drove there.

Out of her view, the three of us cried.

We drove back to the house.  While my brother took out the dog, I changed into real clothes and brushed my hair.  Then, we piled into the car and drove the forty plus minutes to Pittsburgh.

The ER at Magee Women’s Hospital was also empty at that time.  After handing my purse to the security guard and walking through the metal detectors, I enquired about my mom.  They brought us right back.  The nurses and doctors asked us a few questions.  They entered info into a computer.  She was stable and sleeping.  They were ready to move her to the ICU.

We waited in the ICU Family Lounge for what seemed like forever.  The sun peeked from somewhere.  I sipped the worst coffee before switching to water.  An ICU nurse came to get us.  So much was thrown our way.  It was only 7 or 8 in the morning.

We got to say hi to my mom before we left to get some sleep.  They had to do tests and all that anyway.  ICU is a locked ward, so we needed visitor badges.  At the main hospital entrance, they print them using your driver’s license information and picture.  I happened to grab a purse without checking to see if my wallet was in it.  To give me a badge, they had to take my picture from a web cam.  Visitor badge pictures are worse than driver license pictures, especially when you’ve had no sleep.

At 1:30 in the afternoon, the ICU nurse called.  The doctors wanted to see us.  Could we get there right away?

Back at Magee, we sat in this huge ICU hospital room with all its equipment and its beeping.  A barrage of doctors came into the room.  The doctor I remember the most from that day was the gynecology-oncology doctor.  She gave my mom the news—uterine cancer.

But first, they had to stabilize her blood levels, the low platelets, the high heart rate, and deal with the blood clot in her lungs.

For Thanksgiving, the four of us ate the special turkey dinner from the cafeteria in her room.

The days melded into one another.  Magee allows someone to stay in the room with the patient.  We took turns staying over while the other two went home.  The oncology team came in between 5:30 and 6 every morning.  After them, hematologists, cardiologists, and the ICU doctors.

My mom wanted the doctors to talk to us about her situation.  And they did.  We were taken aside to be told about her stage four advanced and aggressive cancer and the tumor that pressed against her nerves, causing her pain.  The doctor did make a point to tell my mom that she couldn’t operate nor could she cure her cancer, but they could treat it, they could stop its spread.  My mom was okay with that.

For the month that my mom spent at Magee, the nurses and doctors and others were wonderful.  My mom received four targeted radiation treatments.  They shrunk the tumor, lessening the pain.

She came home before Christmas with an appointment to see her oncology doctor after the New Year.

Between home nursing, physical therapy, and occupational therapy, someone came to the house about four times a week.  We never decorated for Christmas, but we didn’t care.  My mom was home and she was doing well.

Until the morning she forgot how I was related to her.

Luckily, the nurse was coming to take her blood later that morning.  My mom knew something was off in her head.  She would catch herself… sometimes.  I had to tell her that Grandma and Grandpa had been gone for a long while.  That afternoon, the doctor’s office called.  Her blood count was low again.  She needed two units.

Because of all the antibodies in her blood, it took two days to find compatible blood.  We brought her to the local hospital.  They, too, were great.  After six hours, Mom came back home.

A few days later, we drove back to Magee to see her oncology doctor.  The doctor said that her platelet levels were not rising to where they needed to be for chemo.  She wanted my mom to see the hematologists to get her platelets up.  Before we left, we had new pain medication prescriptions, appointments for a hematologist and follow-ups with her and the cardiologist.

However, her confusion didn’t really subside.  She began having trouble getting around.  Her physical therapist didn’t understand the regression.  We speculated about the new medications.  Opioids can affect people mentally.  Plus, we had to keep increasing the amount she took to squelch the pain.

When one of the home nurses came to take her blood, she called the doctor right away.  She knew something was very wrong with my mom.  The doctor had us go to Magee’s ER to have her evaluated.

It took all we had to get her to hospital.  Her mobility became more limited by the day.

The ER only allowed one with her.  I got to go back.  I spoke with the nurses and the doctors.  I helped my mom change into a hospital gown.

They did an EKG, an x-ray, and an ultrasound of her heart all in the ER room.  By the time my dad and brother were able to come back, they had ordered a CT scan of her abdomen.

Hours later, we were back in ICU.  My mom had sepsis, an infection in the blood.  Turns out, the infection causes mental confusion.  They took cultures and waited.  Meanwhile, antibiotics coursed through an IV.

When the cultures matured, they showed no infection.  That meant that the infection stemmed from the tumor in the uterus.  The oncology doctor came to see my mom when I stayed over.  She told her about the infection and since they could not operate on the tumor, an infection could return.  And that her platelets were very low again.  My mom told her to take care of the pain.  The doctor placed a hand on my mom and said, “That, we can do.”

I spoke with the doctor outside the room about my mom’s rapidly increasing pain and lack of use of her one leg.  She promised to look at the CT scan to see what could be done before she left that evening.

Each night we stayed over, she worsened.  My night, my mom didn’t know where she was or why she couldn’t get out of the bed.  Finally, she told me her name and mine.  I got the nurse and she gave my mom more pain meds and anti-anxiety medication.  It helped.

The next night was my brother’s turn.  His was pretty bad, too.  He called in the morning to tell us that the doctors wanted to talk to us.  My dad and I showered and left.

When the doctor came, she brought the three of us down to the empty family lounge.  Her fellow closed the double doors.  We were soon joined by the ICU doctor team.  Seven of us sat around a round table not too far from the machine that makes the terrible coffee.

I can remember the doctor’s face when she told us how fast the cancer had spread in the past month.  Her expression as she sat across the table from me held such sorrow.  Her eyes wanted to cry with mine when she said that everything in my mom’s body was going and there was nothing she could do to stop it.  She asked us what we wanted to do.

We had talked about it prior when we would walk through the hospital to take a breather.  Mom would come home unless she medically could not.

That night, they moved her out of ICU to one of the larger, private oncology inpatient rooms.  My dad stayed.

He called us the morning to tell us she was being released into hospice care.  My mom was coming home again.  This time, by ambulance transport.

My brother and I waited for the new hospital bed to come.  We signed for the medications and equipment that arrived.

When my mom came home that evening, she hugged my brother and I so hard.

A hospice nurse and nurse aid came every day.  The nurses explained what was happening and did all they could to help her and us.  Every day, my mom lost a little more.

Watching this vicious disease ravage the body, snuffing out the life… there are no words.  No words.

Within a week of coming home, my mommy was gone.

I apologize for any typos or mistakes or rambling or crappy writing in this post.  The computer screen gets a bit blurry from time to time.  This is the first post since I started this blog that my mom won’t read. 

Knowing the inevitable makes nothing easier.  It prepares you for precisely jack squat.

My mom was who I went to for advice about men, fashion, cooking, etc.  She knew everything.  She was my friend.  She was my editor.  As a former teacher, she looked at my manuscripts with a fair eye.  She loved my series and its characters.

I see my mom in Kate, Berty’s mother, in Teresa, Hope’s mother, and in Silvia.  It pains me to know that she will never get to read how the series completes.  Writing this last book has been slow, given the situation.

Last week, I told myself that I’d start working this week.  And I am.  I have things to read and I am acquiring a new manuscript from a new author client who got my name from a current one.  Writing will come.  My characters have been patient with me.

Next Tuesday, I turn _9.  My dad, brother, and I will be going out for Chinese.  When I was little, before my brother was born, my mom and I used to go to lunch at this place, now torn down, where she taught me how to use chopsticks.  I hope my fingers remember how next week.

Cancer is a cruel, brutal, painful disease.  I wish there was a better way to treat it.  I wish that my mom could have had a chance.  I wish for so many things.  As I sit here, eyelashes stuck together, nose sore, I know only this: I could use a hug. 

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