Monday, October 12, 2015

This Sandwich Has a New Slice of "Bread"

My mother...Arline Chandler Smith
Life has a strange way of taking turns you never expected.  When my 76-year-old mother began to complain of pain and soreness in her abdomen last February, I thought little of it...particularly given that her long-time internist in Little Rock did not even examine her when she mentioned it to him.  In fact, he brushed it off and said, "You're not telling me anything that raises concern."  But the pain and discomfort continued through the summer.  And a few months after Mother's internist told her that this was nothing to worry about, he was arrested and charged with running a prescription painkiller ring from his office.  He now faces federal charges, as well.

So Mother found herself without a doctor, and after praying about what to do, she opted to start seeing a nurse practitioner at a local clinic.  Her thinking was that this person could at least refer her to specialists who drove the 65 miles from Little Rock to practice in the outpatient clinic at our local hospital.  Mother mentioned the pain to her NP, who suggested maybe she needed to see a surgeon for an endoscopy.  This was in August...the first available appointment for a consult was November 12th.

Greg pushes Zola in a swing installed in the
backyard at Mother and Lee's house. Behind
them is the platform for the new playhouse.

Meanwhile, Mother was going about her busy schedule pretty much as usual.  She and her husband, Lee, traveled to Tennessee in July for a family reunion.  She tended to Lee as he saw doctors about health scare that some thought might require surgery.  Thankfully, Lee is healthier and stronger at 77 than many men in their 30s, so he is in "watch-and-wait" mode with his health issue.  He put a new roof on their house last spring, and after getting his "good" diagnosis this summer, he set in to build a play house in their back yard for my great-niece and nephews...Zola, Timothy and Nathan.  Lee and Mother had installed a new wood fence around the yard a couple of summers ago, and he saved the fence boards.  They are now being repurposed into a playhouse - complete with front porch, pitched roof, and windows!

Mom offered to keep our 3-year-old great-nephew on Fridays while my niece and her husband work.  The other two children are in school, but a place was needed for Nathan.  Greg and I kept him this summer on Mondays and some Fridays and other weekdays...but Mother wanted to take the "Friday shift."  She enjoyed several visits from Nathan...and my niece, Jasmine would come after work and bring Timothy and Zola and spend an hour or so visiting and letting the children play in the back yard.

All of this changed on September 21st, when Mom awoke with what she thought was a UTI.  We laughed, because she immediately "doctored" herself with Cipro, an antibiotic that she had purchased at the "pharmacia" in Mexico while she and Lee wintered in Arizona.  In fact, she messaged me before noon and said, "I'm much better already, and I feel silly to go to the clinic.  But I guess I will go ahead and keep my appointment.

At the clinic, my mother saw another Nurse Practitioner.  She mentioned again the pain in her abdomen...and this woman examined her.  "Your stomach is 'hard'," she told Mother.  She ordered a CT scan at the hospital for the next morning and told my mother that she would call in the afternoon with the results.  Before noon, she had phoned to say, "You have a mass in your stomach, and you need to return to the hospital for blood work.  We will probably order a biopsy."

My mother is an avid traveler.  She is a free-lance writer, author of eleven books, and weekly contributor to a website for RVers - - where she maintains a blog about her travels with Lee in their 42-foot motorhome.  When Mother received this news, she had a PR trip planned to Branson, Missouri - which is something of her "second home." Businesses and attractions in Branson were hosting writers and media people from across the country for the weekend.  It would be almost 3 days of good food, great shows and entertainment, and topnotch hospitality.  Mom got the blood work done and opted to go to Branson.  She and Lee returned home late Sunday evening.

Monday morning, I got an e-mail from Mother..."I have a serious problem, Debbie. The tests show cancer markers and it’s my ovaries. But there is more than one mass. [The Nurse Practitioner] has blocked off an hour to talk to me—to us—in the morning at 10:00, unless they can do the biopsy tomorrow. She offered to come to my house and talk to us tonight—in fact, she said she felt so heavy about this that she almost called and asked to come last night. I want you and Suzanne [my sister] to go with me to talk to her, as well as Lee. This is going to be OK—no matter what. Just going to be a battle ahead." 

So the following morning, Greg and I met my mother and Lee, and my sister Suzanne, at the clinic.  We all squeezed into a tiny exam room where the Nurse Practitioner came in and introduced herself to each of us, then sat in the floor with her laptop and a folder of test results...and she began to give us the "report."  Mother has multiple masses, ranging in size from 2.5cm to 10cm...and they were all over - near her liver, in the lower quadrants of her pelvis, and floating in her abdomen.  None were thought to be attached to organs.  While the CA125 blood test for ovarian cancer is not reliable - often giving a false negative - Mother's did indicate a positive.  "Normal" range is less than mother's count was 300.  The nurse kept telling her how sorry she was.

I guess I was in disbelief.  Mother had not seen a doctor.  Perhaps this was all a mistake.  But a biopsy was scheduled for that Thursday morning in Little Rock.  Mother would not let us go with her...Lee drove her down for the procedure.  After the biopsy, she did ask if I would keep Nathan on Friday...she realized that she was too groggy and sore to manage him.  She was scheduled for a consult with the oncologist on the next Thursday.  After Mother and Lee met with the oncologist, they came to our house and met with Greg and me - and Suzanne - and delivered the official report.

The oncologist felt like all indications were that this was ovarian cancer; however, he wanted to examine blood work and get a PET scan to be sure. Those have now been studied, and his best guess is that an ovary ruptured and "spewed cancer cells" throughout my mother's abdomen. The good news is that there is no spread beyond the abdomen - nothing in the chest and beyond.  The oncologist is treating this as Stage 3C Ovarian Cancer...and aggressive chemotherapy was begun on Thursday, October 8th.  

Mother got IV drugs for nausea - and steroids - and then she spent the next three hours receiving  Paclitaxel (conventional) and Carboplatin.  On Friday, she got a shot of Neulasta to boost her immune system - to the tune of $5000.  Thankfully, she is told that her insurance company will cover this.  But she must have Neulasta after each of her chemo treatments, which are scheduled for every 3 weeks.  Her oncologist told her that within 2 weeks of this first treatment, she will begin to lose her hair.

Mother felt GREAT after the she could climb a mountain (the steroids).  She didn't sleep much Thursday night, but on Friday, she still was energized...until sometime late afternoon.  She thought maybe it was the Neulasta, but she had a "small sinking spell" while shopping and hurried home.  Saturday she laid around and did not feel Sunday, she had all of the side effects - nausea, vomiting, diarrhea, body aches and pains.  The only thing missing was hair loss...and she is bracing for that.  She feels in bed a lot...and her world has been turned upside down.

In the course of less than a month, my mother has gone from planning her next trip to planning a trip to buy a wig when her hair falls out.  In the course of ten days, she has gone from spending a happy Friday with her 3-year-old great-grandson and an hour or so of play with her other two great-grandchildren and their mother to being unable to sit up and answer e-mail at her desk for more than an hour or so before returning to bed.

I will tell you...I feel pretty helpless.  I want to do for her...and there is nothing to do.  She said, "Keeping the children is helping me.  If you will keep Nathan on Fridays, that will be your part."  Somehow, it doesn't feel like enough - and yet, I know that more "opportunities" to "do" will come in the next few weeks and months.  So Friday, I kept Nathan.  Sundays after church, the children come home with us for a few hours, and we did that yesterday.  Today there was no school for Timothy, so both he and Nathan came to my house for the day while their parents worked. I take the two oldest children to Taekwondo lessons on Mondays and tomorrow, we will go to our class.  Mother keeps e-mailing me and thanking me for doing these things for the children.

Timothy rides his tricycle on Mother's carport.  They recently
bought the kids this tricycle - complete with bell and tassles!
I am still trying to process all of this in my own head.  The children do not know about my mother, other than that Granny did not feel well Friday, so Nathan came here.  At six years old, Timothy is incredibly sensitive about old age and death.  He thinks that anyone who gets sick - or old - "will die like Mam-ma Polly."  He remembers her death...and paired with the deaths of two beloved family pets who were old and sick, he has formulated the idea that when you are sick or get old, you die!  And this worries him.  When Mother starts to lose her hair, the children will have to be told something...but we have a few days until then.  And her doctor has told her that she is to avoid sick people and small her contact with them will have to be limited anyway.

Nathan sits at our kitchen counter
during one of his Friday visits.
So my days are once again filled with children and their activities...and caring for a loved one at the other end of the age continuum - as much as she will allow!  I really anticipated caring for my mother when she was 90...not 76.  And I'm really not sure what to do with all of this information just yet.  I am trusting God to take me by the hand and lead me, because I feel like we're all somewhat fumbling in the dark at this point.  I know that He is more than able...and that He has my mother - and all of us - in the palm of His hand.

For now, I commiserate when Mother sends an e-mail to tell me she is going back to bed...and I color another picture with Timothy and play "superheroes" with Nathan or read a story to Zola.  It's doesn't seem like enough...but somehow, for is.


Mark said...

I feel so sad for you and your family. As a student, I had you for a teacher, but not your mother. I heard great things from my friends about her, and from what I have learned by following your blog I can tell that she still elicits the same reaction from people now. You have dealt directly with the sick as much as anyone who isn't in healthcare as a career, but I can't imagine how much different it must be now that it is your own mother.

Anonymous said...

Our thoughts and prayers are with you and all your family. As you know your mother and I go back a long ways and have been friends for many years. She was my maid of honor and your dad was our best man and our wedding 59 years ago. They married 1 month after we did. My heart is broken and I am so sad that this is happening to you all but we must trust God as he has a plan for all our lives and we never know when
the norm will change and we will be faced with a very difficult situation. Please know that we are praying everyday for all of you and especially your Mom.
Carolyn Estes