Wednesday, October 28, 2015

What's in a Haircut? A Reality Check...

When Timothy was about a year old, I took him for his first haircut. As the barber trimmed his curls and gave him a "big boy" shape, I watched our baby disappear before my eyes - and a toddler appeared in his place.  I used to take my grandmother for her weekly visits to the hairdresser, and I laughed at the contrast - the "straight-across-the-forehead" bangs of a one-year old vs. the softly teased white curls of someone in their late 90s.

But an experience last week was a total "first" for me...one that I did not expect.  I drove my mother to the beauty shop for a haircut to trim her hair to a one-inch length all over. This was in anticipation that any day, she would lose her hair completely as a result of chemo.  The trepidation felt by both our then-one-year-old Timothy and my 76-year-old mother was palpable...obviously, for very different reasons.  One did not understand what the man was doing to his hair...the other was probably asking herself, "How did this happen to me?"

I thought Mother's new haircut looked cute. We took "before and after" photos, and the hairdresser and I teased that she should use some gel and spike it up and "go wild!"  Mom barely laughed and said she would NOT be doing that!  A day or so later, she returned to the hairdresser with a wig that she had purchased but was not totally convinced she liked...and the hairdresser cut and styled it for her. 


Mom posted a picture of her new "do" on Facebook, and many commented how beautiful she looked - and how nice her hair was.  I think that was the only day she actually wore the wig.  She said since she mostly just lies around the house, there was no sense in putting it on for that.

Yesterday morning, I received an e-mail from my mom saying that her hair was coming out in clumps...and that her hairdresser would buzz her head for her - but not until the next day.  The hairdresser was busy and could not work this yesterday.  I "buzz" Greg's head every week.  We have clippers, and I know how to use them.  So I offered to come and buzz my mother's head.  She responded almost immediately and said yes...this would be a great help to her.

So I gathered the clippers and a bed sheet and drove to my mother's house.  We "set up shop" on her sun porch, and I clipped her already-short hair down to a fine "fuzz" all over her head.  She's not slick-bald yet...but she probably will be soon.  Once we were finished, Mother got up and tied on her little cotton turban.  "Aren't you going to look in the mirror?" I asked.  "No!" she emphatically responded.  And several hours later, she told my sister that she still had not looked at herself in the mirror.

I didn't think Mom looked that bad without her hair.  I don't know what I expected...and maybe it's because I do buzz my husband's head every week with the clippers. I am used to that "look".  But I did have the sense as it was happening, "What am I doing?"  And then I remembered...Mom's hair is falling out in clumps anyway.


We are only one treatment into this journey, and so far, my mother has pretty much had one "normal" day in the last three weeks where she felt "good" all day long.  And she made the most of it, with a trip out for lunch and to the Dollar Tree. She stuffed Halloween treat bags for the children.  She worked on her blog posts and answered e-mail.  Many days, she has been able to do small tasks for a few hours...but ultimately, she has ended up back in bed - or on her couch...drained...spent...totally exhausted.  

We are told that the treatments have a cumulative effect.  We're also told that some people start to feel "normal" just in time for the next treatment.  It's so early that we still don't really know what to expect.  This Thursday, Mom will get her "port"...and then she will have a 3-hour chemo treatment, as well as blood work and a visit with her oncologist.  Maybe we will know more about what lies ahead after all of that.

Mom's surgeon explained to her that her chemotherapy drugs attack cells that are dividing...and cancer cells divide.  So do the cells that make up hair follicles...hence, the hair loss.  It's daunting to think that the poison that can kill cancer cells - and cause you to lose your hair - could also be healing you at the same time. 


I told Timothy that his hair would grow back...and it has, over and over again.  We've made numerous trips to the barber shop...and in recent months, Timothy's Granny (my mother) had taken on that task.  Hopefully, in time, HER hair will grow back...and maybe they can once again make these trips together.  For now, we'll all step in to do what must be done and pray that the drugs are working...and that we are headed in the right direction.  After all, it IS just hair...right?

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 - RVLife.com - 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 30...my 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 treatment...like 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 well...by 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 lousy...is 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 Tuesdays...so 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 children...so 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 now...it is.

Saturday, February 7, 2015

Please Take Time to Watch...

Dementia is one of the hardest things for caregivers of the elderly to understand.  "Why does Mom act this way?"  "What is wrong with Dad?"  How can they be so confused and lose focus so easily?  This video does an amazing job of examining these questions and more...and demonstrating what life may be like for a loved one with some form of dementia.  It is well worth the 8+ minutes it will take to view...8 minutes that could change your entire perspective.  I would not wish this on my worst enemy...but sadly, many people we love dearly are dealing with some level of this madness - either personally, or as a caregiver.  Please take time to watch and learn...it might make a huge difference in your life and that of someone you love.



Friday, January 9, 2015

Serving a Purpose

I know...it's been a while since my last post.  Frankly, I have wondered just what I am supposed to say here, now that my Mam-ma Polly has passed.  And yet, it seems that we are still very much in the middle of the "Sandwich Generation" as my mother-in-law nears her 9th decade of life.  Each week brings a new ailment of sorts...nothing all that significant at this point, thank goodness...but little aggravations (for her) all the same.

The children have come to understand that on any given Sunday, "Grandma E" may not be able to attend church with us.  At first, this upset Timothy...and he was very concerned about "Grandma E" (who is very much a beloved "great-grandmother" to these children)and why she didn't come with us.  But as time has passed, he has seemed to accept that there are good Sundays - and those that are not so good - and he and Zola appear to be more readily accepting of the latter.

At the same time, one of our sisters-in-law, Laney, is dealing with the challenges of her 95-year-old mother's placement in a skilled care nursing facility (3+ hours away in another city) after she suffered a stroke and a fall.  One evening shortly before Christmas, Laney e-mailed me to describe what she felt was a very disturbing incident.  Laney's mother cannot see, but she persuaded someone at the facility to call her daughter.  When Laney answered, her mother went on a rampage...she could not stay at this facility any longer...she could most certainly not be there for Christmas...she just would not have any of this...Laney absolutely HAD to do something.  Laney mostly listened...and when she hung up, she was totally rattled and upset by the call.

As I read the message and heard what Laney's mother had said, a sense of familiarity washed over me.  I quickly replied to my sister-in-law and told her, "I am no doctor, but I am fairly certain that you have just described a TIA (mini-stroke).  I am betting that things will be totally different tomorrow...and your mom might not even remember that she called you. At the very least, I'm betting she will be subdued...and possibly even very tired.  Mam-ma Polly did this same thing SEVERAL times."  I offered some advice about how to respond to these rants...and I shared with her some wonderful advice that a dear elderly friend of mine once gave my mother..."One day, all of the 'bad stuff' will fade away, and you will be left with only good memories."  I also told Laney that I miss my grandmother terribly...that I would even settle for one of her rants - just to hear her voice again.  Quite literally...this, too, shall pass.

Laney responded quickly and thanked me.  She expressed how much it helped to hear from someone who had "been there, done that".  She had not considered a TIA, but once I mentioned it, she felt I was probably right...and knowledge is power.  Understanding that this might be the culprit helped to answer her question of "Why would Mother do this?" - and that seemed to set everything in the proper perspective...and prepare her for any future "surprise" phone calls.  And just as predicted, her mother has not mentioned the phone call at all.


It felt good to help...to share what I had learned in a positive way...and to reassure someone else that "you are not alone in this." And while Greg was with me every step of the way in my journey with Mam-ma Polly, there have been times recently when I have reminded him of incidents in connection to situations with his own mother.  We have found it helpful - and somewhat comforting - to remember these things and say, "Oh, yeah...that's not so unique after all.  It may be screwy and frustrating - but not so unusual!"

Today, I spent some time talking with one of our dearest friends, whose mother is rapidly declining and in need of skilled care of some sort. We have known and loved this person since childhood.  So he feels comfortable sharing his concerns and frustrations with us about his mom's situation. 


My heart breaks for anyone going through these tough experiences.  But at the same time, I am glad that I am able to offer some encouragement - and maybe a helpful piece or two of advice.  If sharing anything that we experienced with Mam-ma Polly or my maternal grandparents during their nursing home stay and decline can be helpful to someone else, it somehow makes me feel like all of that serves some sort of purpose.

Choosing a facility for your parents/grandparents IS a daunting task.  Navigating their phone calls and confusion and frustration is highly stressful and frustrating to the caregiver.  Dealing with administrators, government agencies, banks, lawyers, doctors, and realtors is daunting and can make one's head spin!  Having someone who can say, "This is what I did" or "Here's how we handled that...and why" or "My mom did the same thing" can be so helpful. 

I cannot "fix" any of these situations.  Try as I might, I could not fix my grandmother's issues...and I knew all along that I was not supposed to.  I did the best I could, which is all anyone can expect.  But sometimes, we don't even know what THAT is, on our own.  The helpful support and encouragement of a friend who has walked this road can be incredibly comforting.  Or at least I hope it is. 

So I feel like I am serving a purpose...and reaping SOMETHING good from all that we have experienced already.  I told our friend who called that our situation felt crazy at times, but in the scheme of things, it was not that troublesome.  Mam-ma Polly was healthy and relatively well until about 36 hours before she died.  She never became combative or violent, as some do.  She had her "moments"...but it could have been so much worse.  And I thank God for this grace and mercy!

I would like to think that as my mother-in-law and my own mother age, and possibly decline, I would handle these situations with calm and confidence.  But I know better.  There is nothing fun or easy about watching your parents age and decline...much less dealing with the issues that often accompany this.  But as I told our friend, we are not alone.  We're all in this together.  And hopefully that counts for something!

If you wish to share your own situation and circumstances...or to "vent"...feel free to contact me via this blog.  We ARE all in this together...and you DO have people in your corner.