The Eyelashes

The eyelashes (and hair) are coming back.  The hair loss side effect of chemo has been most interesting. A week and a half after starting chemo back in April I noticed a lot of hair in my hairbrush.  I was hoping to be part of the small percentage who does not lose hair but it was not to be.  By two weeks minus one day when I took a shower and washed my hair, there in the brushout was a mountain of hair.  That was it.  I went in for chemo the next day, left after my treatment and drove (actually my husband did the driving) to the hair salon where I had purchased a wig before I even began chemo.  I told the woman I was there to pick up my wig and have my head shaved.  “I don’t want to see myself.”  I told her so she buzzed off the hair, put on the wig and then turned me toward the mirror.  It was not until I got home that my curiosity got the best of me.  I took off my wig, peeked around a corner and peered into the bathroom mirror.  “Not as bad as I thought it would be.” I thought and then came around the corner and stood in front of the mirror for inspection. “Weird hairdo!”   Phil told me.  But the family soon got used to seeing me without hair as we headed into the summer months.  A few months later the eyebrows and the eyelashes fell out.

Now that chemo is over and the hair is starting to grow, one of Phil’s favorite things is taking off my wig when I come home and rubbing my head while telling me how soft my hair is.  I have gotten quite a few head rubs in the past couple of weeks from him and others in the family and daily comments on noticeable growth.  My hair grows slowly so it will probably be many months before I go out in public without a head covering but at least for now I can put mascara on my very short eyelashes.

The continuation...

Fast forward to the last weeks of winter.  I had a routine colonoscopy scheduled for March 7.  We were at the hospital at 6:00 a.m. for a procedure I assumed would be much like the one I had had five years earlier.  I was surprised when I came to and heard discussion about an obstruction and a need for an x-ray and CT scan.  A new adventure was about to begin.  It looked like ovarian cancer which was eventually confirmed.  Five days later I went in for surgery and 11 days after that was released from the hospital and sent home to mend before chemo was to begin one month after surgery.  There will be more to come in future posts plus how Clark and Phil responded to this new development.

I'm back...

...or at least I think I am.  My heart and mind really want to be back but my body says "I don't have enough energy.  I'm too tired.  I'll get to it tomorrow."  And tomorrow turns into a month and then five and I've missed recording many things said and experienced.  I do keep a daily journal but it is bare bones for the most part.

Last August I visited the MIND Institute in Davis, California to have confirmed a developing suspicion that I might have FXTAS (Fragile X-associated Tremor/Ataxia Syndrome).  Here is part of the definition which is posted on National Fragile X Foundation's web page.

"FXTAS is a late onset (over age 50) neurological condition. It occurs in individuals who have a specific change in the “Fragile X” gene, which is on the X chromosome. This gene is called the FMR1 gene. The specific change is called a Fragile X or FMR1 premutation. Individuals who have an FMR1 premutation are Fragile X “carriers,” meaning they may not experience any of the symptoms of Fragile X syndrome but “carry” the potential to pass the premutation on to their offspring (more on this below). Not all carriers will develop FXTAS, but all individuals with FXTAS have an FMR1 premutation. Researchers are investigating what other factors might contribute to FXTAS in FMR1 premutation carriers."

I am one in 8-16% of female carriers who develops it.  Here is a little history.  I have always enjoyed singing in groups, in choirs, along with the radio or a CD but about ten years ago I noticed I didn't enjoy singing as much because I couldn't sustain notes and then I noticed a slight quiver in my voice.  Then I noticed a tremor in my left hand and then I noticed my handwriting wasn't as neat.  At the MIND Institute I became part of a study and was put on Memantine or a placebo.  I did not notice any difference and just found out a few weeks ago I was indeed receiving the placebo.  I am happy because now (hopefully) I will receive something that will help with the tremors.

A week or two before we (Paul and I) went to Davis I was reading the scriptures and came across this verse from Deuteronomy 31:6 "Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."  I have been at peace because I trust that God will go with me on this journey and that He will not fail me nor forsake me.  Little did I know how much I would rely on this verse in another situation that came to light in March of this year.

FXAWS Annual Conference

February 25^th was our (Fragile X Association of Washington State) annual conference held at Seattle Children’s Hospital.  It was a very successful conference with keynote speaker Louise Gane from the MIND Institute (Medical Investigation of Neurodevelopmental Disorders) at UC Davis.  She is very personable, interesting and informative and was well received during the two hours she spoke.  In the afternoon we heard from Dr. Gwen Glew who practices pediatric developmental behavioral health and pediatrics and is the director of the Fragile X Clinic at Children’s, Hower Kwon who specializes in the assessment and treatment of psychiatric and developmental disorders of childhood and adolescence and Norma Gunnerssen, a special education teacher from the Edmond’s School District.  At her conclusion the four speakers sat in front of the attendees and answered questions for an hour.  Philip had been sitting on the front row throughout the day.  When the questions began he turned around and noticed I had a handheld microphone that I was taking around to those who were asking questions.  He was out of his seat in a flash. 

I let him take over. 

He and Clark were a tremendous help in loading and unloading the van with handouts for the attendees, available books and media for a display and many other things and then, at the end of the conference, taking down and then hauling it all out to the van.  Then once we got home, they carried everything upstairs so I could put it all away.  They are a great help!

Silence for Four Weeks

No—we have not been on vacation, so what has happened?  I have no one to blame but myself for not posting for four weeks.  It has been busy as usual.  I was going to say not any more so than usual but we have had our youngest, her husband and their two very young sons here for over two weeks.  They will be here until April plus she just gave birth two days ago (ten days over) to their third child.  It’s still no excuse.  Since I last wrote bowling has come to an end.  Practice for track and field will begin in March, twice a week, until the first weekend in June and then softball until bowling starts again in August.  Here are some significant things that have happened in the past month (besides the most important—the birth of our 8^th grandchild):

1.       We saw another neurologist for Clark, one that has a specialty in epilepsy and clinical neurophysiology.  We think he will be Clark’s neurologist from now on.

2.      We have already phased Clark out of one medication he has taken for years and started him on another.  He is still on a total of four seizure medicines that he takes twice a day.  Even with all that he still has about eight seizure days a month.

3.      Phil is out of his bedroom until further notice.  He is Mr. Organized so it is amazing that he is doing as well as he is with many of his things in disarray.

4.      Paul and I are teaching a marriage class every Wednesday evening until the end of April.

5.      I spoke to a group (Seattle Organization for Jews with Disabilities) for two hours on Fragile X Syndrome.  I have a PowerPoint presentation that I gave two years ago to another group that works well and that I thoroughly enjoy giving.

New Mom and baby are in the hospital until tomorrow so we have had responsibility for caring for two very active boys, three years old and 21 months.  I laughed as we were headed to church this morning.  Phil was wedged in between two car seats eating Cheerios with his two nephews.

A First

All week the snow has been accumulating.  Streets have been icy and treacherous.  Paul and I are teaching a marriage class which was to begin on Wednesday evening.  It was canceled.  Thursday night we had a meeting which was canceled.  Though the snow is beautiful there have been over 2,000 accidents just this week due to the weather.  Thursday morning I had a hair appointment and because my hairdresser works out of her home and it is only a mile away I decided to walk.  I was accompanied by Paul, Clark and Phil who needed the exercise.  About a block from her house Clark had a small seizure so we huddled together and had prayer, hoping that he would not have a grand mal.  I took one arm and Paul the other and we continued to walk when suddenly he went into a grand mal and fell gently to the ground while we were holding onto him.  There were no sidewalks so we were literally in the middle of the street.  It happened in front of a house where a man was standing by his car.  He asked what he could do to help.  We told him a rag or towel would be helpful which his wife, who was still in her pajamas, handed out to us.  She also called 911 which we felt was unnecessary since we have seen and dealt with thousands of seizures but we didn’t tell her that.  Paul and I tried to shield Clark from the falling snow but there was nothing we could do to keep him from getting wet from the snow on the road.  Before the fire engine arrived the seizure was over and Clark was standing, disoriented and shaky.  Three firemen arrived, saw that Clark was not hurt and then offered to take him (and Paul and Phil who opted out) home.  I felt overwhelmed by Heavenly Father’s help which was not in the way I expected.  They got in the fire engine, Phil turned around and walked home and I continued on to my hair appointment.

Let It Snow!

Snow is a hot topic around here and has been since Sunday when the first snowflakes made their appearance.  It is a big deal since there are many years we do not get any snow.  We have to enjoy it when it comes because it won’t be around for long.  Every hour we listen to the radio, check online or watch the news on TV so we know the latest.  Our most popular source of information is looking out the window.  It is always amazing to me that a two-minute snow update on radio or TV can be stretched into two hours and then repeated after that—the same information, the same pictures.  It is beautiful unless you have to get somewhere by car and don’t have four-wheel  drive.  And that was us.  Yesterday the five of us piled in the car to head south 25 miles to a memorial for a very good friend.  It was snowing with icy road conditions.  We watched with wide eyes and comments as cars slid and some stalled but we would not be deterred.   The snow curtain seemed to part as we got on the freeway going south and by the time we got to downtown Seattle there was little indication that there was a snow storm going on in the area.  By the time we got to Burien the sun was out and the roads were mostly clear.  Amazing!  This morning we awoke to more snow so in keeping with tradition four of us went out into it to play and to go for a long walk.  Snowballs flew almost the entire hour we were out.  When Clark wasn’t throwing a snowball he was making a snowman while I was drawing hearts in the snow with messages of love.

Confetti

Phil came home from his walk a couple of weeks ago talking about confetti. 

“What???  Confetti?  What are you talking about?” I asked him.

“Confetti…no…hmmm…no…grafetti.”

“You mean graffiti?”

“Yes  Yes!”

“What about graffiti?”

“Our mailbox.”

“There’s graffiti on our mailbox?”

“Yes!”

“That’s great.”  I said with sarcasm.  Phil took off and soon returned with my camera and then went back out the door.

The Newest Christmas-time Tradition

As best as I can tell, the year was 2004 when the tradition began.   It was Christmas Eve day when the “boys only” (one dad and four sons) in our family went shopping downtown.  It wasn’t necessarily the intent at the time but that day launched a new tradition.  Since then one new “boy” has been added—our son-in-law.  I look forward to it almost as much as they do—to hear the stories of how things went and to see the pictures.

Pictures were not always taken but here are a few that give the flavor of this wonderful tradition.

                                                                                        2009

2010

2011