Friday, March 27, 2015

Tears and Joy

That's right, tears and joy, not tears of joy.  I have been weepy lately.  I don't feel very good-physically I ache all over.  It sucks.

Then, I started to think back to when I went over the handlebars of my bike.  It was February 1998.  I flew, and landed really hard.  It hurt.  A lot.  As I lay in the roadway bleeding, my first thought was "this really hurts".  My knee hurt.  I was alive, or I wouldn't be in pain.  My back was not broken because I was able to feel and move my feet.   That was an important lesson for me that day.   I need to remind myself that I do have a lot to be joyful about.

It is okay to be scared, sad and sometimes in pain.   I am alive.

A friend of mine recently celebrated her 89th birthday.  She was born the same year as my mother, who only got to live to the age of 77.    This friend of mine is frail.  Or fragile.   I worry about her falling over- or ever just tipping in the wind.  She is unsteady on her feet.   She has had health problems for the last few years.

Even with all of her health concerns, and her age related frailty, this friend is happy to be alive.  She recently changed some of her medication and is all of a sudden feeling much better.  She has an appetite and is enjoying eating.  She looks brighter and is more joyful.

Life is like that. You can be down and depressed or sad or in physical pain.  Then you are not.   Something somehow makes it better.  Bearable.   Worth living and smiling.

Just as we are all different physically- tall, short etc., we all have different experiences and genetics and brain chemistry.  Al of these things have a direct (and not so direct) impact on our individual humor, sadness and general outlook. 

Our outward self is always changing.  So is our inward self; our brain, thoughts and spirit.   Or, is the spirit always the same and just expressed based on- what?   Indeed.   What?

This picture was taken a week or so after I fell off my bike.  I was leading with my left hand because my right hand was broken.    You can almost see the bandages wrapped around my knee and my right elbow.   I am lowering myself down a cliff in view of the Indian Ocean in Western Australia- feeling very much alive!

Thursday, March 26, 2015

Thyroid stuff

I have been reading information on thyroid disease.  Specifically Hashimoto's , which I have, and have known I have for 20 years.

I am just going to post a link here.  If anyone feels like looking at it, you will see some of what I have been going through for the last 20 years.

Give Me a Break!! aka Doctor’s Hall of Shame

Monday, March 23, 2015


I am so good at griping about what's bothering me and what's wrong in my world.   Well, I guess it is an outlet for me.  Putting word to my feelings helps me cope- I guess cope is a good word for it.  Seeing what I have written and how I have expressed what I am feeling and experiencing, helps me focus and reflect and live through it all.

So, that's not what I  am going to write about tonight.  My "stuff" that is. 

Last week, Thursday evening, I went to a school play.  My eight year old grandniece was a lamb in a second grade play.  It was a creative variation on The Farmer in the Dell.   It was so sweet seeing her (and the hoards of other second graders) in their costumes, singing their song and saying their well rehearsed lines.

As I sat there watching her, I was taken back almost 30 years ago when I had my own little girl on stage performing.   When Courtney was eight, we were living in Tromsø.  She took ballet lessons in a building right by the bridge to the mainland.   Her teacher was a young British woman who's name I cannot recall.    Anyway, Courtney and her classmates were all dressed up as sunflowers.  The parents were given some yellow fabric and maybe some green fabric as well as the tulle for making the tutu.   I don't think that there were any specific instructions other than " sy en sollsikke drakt" ("sew a sunflower costume").  I think that the sunflowers were a part of a bigger garden theme.  

Unlike the show I went to last week, which was limited to the second grade classes, Courtney's recital involved the whole dance studio.   It want from toddlers to adults.  (Morgan could have been on stage with his age group, but that's another story.)

The show was held in the Tromsø Opera House.   This is a large venue, probably the largest in town when we lived there.  I went with the three kids and as I recall, Nick met us there.  We had balcony seats.  Darcy was under two years old at the time, and the balcony was not a good place to be with the little climber! 

Funny how a present day experience can transport you back to a similar experience.  Remembering your independent, adult children as little ones is, I am sure a common parenting phenomenon.  It's mind blowing.  It is a type of time travel.   It makes no sense, yet it's what happens.

If I ever get around to digging through all of our pictures from our time in Norway, I will have to scan a picture of my little sunflower named Courtney!

Saturday, March 21, 2015

Here's the thing

I ache all over.  My back.  My knees.  My sciatica in my hip.   My ankles (why in the world do they hurt?) and, of course, my head.

Here's the question.  Why? What is causing me to hurt all over?  is it stress?  Is it stress, worrying about my impending surgery.  Is it caused by my goiter pressing on things that make other things hurt- a sort of reverse acupressure?

And why does my head hurt?  All the time.   Tigger, the cat, has been sleeping on my pillow at night.  Every night for the last month or so.  Maybe the same amount of time I have had this headache.   

I have always believed that he knew about my brain tumor before I did.   He slept on my pillow- near my head, every night until the tumor was removed.  Do I have another tumor?   Or, is Tigger sleeping there because he is now the last and only cat in the house. Is he just lonely?   Is he sick?

I made an appointment to see my neurologist about my headache (s).  But I cannot see him until April 2nd just 4 days before my thyroid surgery.  

I think I will send an email to the folks at Johns Hopkins who are my tumor team and see what they think I should do.

I am tired a lot.  Yesterday I fell asleep around 4:40 in the afternoon, and woke up after 7:00.  I wasn't even sure what time it was- was it day or evening.  It was evening.  Then, I got up, ate something, watched TV and was back in bed for the night somewhere around midnight.

Stress, worry, depression, pain.  All of these things can make you sleepy and achy.

I hate that I am having surgery.  Hate hate hate.  But, this time I know it will help me feel better.    I am scared.  The surgeon was not sure if the whole goiter can be removed all at once, or if I will have to have two surgeries a few weeks apart.

I am kind of pissed/ annoyed/ upset that so many doctors have just patted me on the head and not really treated my illness.  I honestly think that without this surgery, I will die.  My throat would get more and more compressed until I would not be able to have a repair surgery, and I would just suffocate.   A terrible thing to think about.

I also, somehow, feel a little bit guilty.  I feel like I am letting myself and others down.  I just cannot do anything that requires strenght or energy.

I am looking forward to seeing all of that change.  Soon.

Monday, March 16, 2015

The sun has been shining today

I am always amazed and surprised by how my mood and temperament are effected by the weather.  I shouldn't be, but I am.  Today has been a warm, sunny day and I am feeling a little bit better (at the moment anyway)

In actual fact, I have been a bit weepy today.  I have a cold and a fever and if the sun wasn't shining, I would probably be more than a bit weepy.

I have been frustrated by phone calls that I have not been very successful at making.  I called to ask a nurse some questions (about my surgery).  Her voice mail message said "I am away until March 20th, please call this number for help.  I called that number and I got the same voice mail message... she's away.

I am just feeling really emotional lately.    Missing my far away kids.  Facing yet another surgery.  Missing my mother.   Feeling a little scared.  

The last surgery, my brain surgery, was of course a much more dramatic thing than having my thyroid removed.   I never expected to have a breathing tube left in for two days.  I was unprepared for the inability to speak due to the breathing tube.  I know I was pretty well doped up, because if I hadn't been, I know that I would have freaked out totally. 

And so, now I am facing more surgery.  I have already written about my experiences with the foibles of the medical community as I have encountered it where my thyroid health is concerned.    I do trust the surgeon.  But Ia m still scared.  This time I will be intubated while I am still awake, then anesthetized.   I know I will get through it and hope to feel better afterwards.   But I imagine myself choking as the tube goes into my throat.   Good thing Ia m tough.  As my mom would say "a tough cookie".

Yesterday, Courtney put a picture of herself on Facebook that he husband, Ben took.   It struck me; what a beauty she is.  It made me miss her all the more.  Not just the "her" of now, as an adult.  But her as a child, as a baby who brought such mystery and joy and yes frustration at times) into my life.  You really don't own your children.   You only get to keep them for a little while and then you have to share them with the rest of the world. 

And the parents of the beautiful little sucklings get to wean and release them as citizens of a broader world.  They have their own lives where we don't live.   Could not live. 

I fell head over heals in love with this little being.  

She grew up into the beautiful woman.

Friday, March 13, 2015

The headache from hell

I have been having pretty bad headaches for about 3 weeks now.  These headaches are not bad enough to keep me awake at night.  They are enough to make me feel grumpy now and then.

I am sure that all of the weather changes over the last month or so had created a lot of "barometer headaches"The way it works as I understand it, is that the changes in the barometric pressure can cause bad headaches to people who have had a brain tumor, or had one removed.   I am almost 9 months out of my brain surgery.  Even so I keep thinking I need to see my neurologist .  Maybe it's nothing.  Maybe a change in medications would help.  

Today was the worse headache I think I have ever had.It was bad enough that I thought I would have to get Nick to drive me to the hospital.

Once we had lunch (Costco hot dogs, yum)  I felt a little better with something in my stomach.  I'm not sure why food would effect my head, but it did.

We did a couple of quick errands and went home.. With my cold.

Yesterday, the surgeon put a scope up my nose, down the nose and down into my esophagus.


Falling asleep at the key buttons.must sleep now. More to come...

Thursday, March 12, 2015

Here we go again

Now it's my thyroid that is going to have it's own special day in the operating room.   April 6th to be exact.

Yes, today, my sister, husband and I went for a follow up with the surgeon I saw a few weeks ago.   The good news is, the goiter has not grown all the way down to my aorta.   The rest of the story is that it has grown under my collar bone.   Good news, no opening my chest, bad news, lots more tissue to remove than if it were smaller.

I am totally exhausted right now.  Taking it all in.  Knowing that I have to do this in order to survive.   Swallowing is becoming hazardous.   I choke very easily.  Once while driving I started to choke and couldn't get a breath.  I was ready to put on my flashers and get out of the car and hope someone would help me.   With a great deal of effort I was able to cough and then breath.

I know that it's nothing I have done, or not done that has caused this.  It just is.    I feel so very let down by all of the doctors who have not taken me seriously when I have expressed concern about the "lump in my neck".    I was diagnosed with this goddam thing in 1995.   I plan to make a list of every doctor I have been to about my thyroid and send each of them a letter.

One doctor told me all of my problems were because I was breastfeeding at the time.   Another doctor, who was great for quite a few years, finally fired me for gaining weight.   One doctor prescribed so many things and doses and vitamins, and spoke so fast I couldn't understand what he was saying.   (turns out he is making over $200,00.00 in kick-backs from the drug companies).  And the recent one who stood on one leg and then the other, perched like a flamingo.  All that was missing were the pink feathers.

Because my thyroid is so large and obstructive, I have to be awake when I am intubated for surgery.  Then I will be knocked out.  This fucking goiter almost killed me when I had my brain surgery.  I was very difficult to intubate.  I had to keep the breathing tube in for 2 days after that surgery.

Life keeps coming at my like a flying, burning meteor and I don't know where to duck, or even if there's time.    All I keep thinking is "what's next".  What? I am ready to take a vacation from my health issues.

I am so ready to be healthy and whole and done with this shit forever.  or at least for a while.

Friday, March 6, 2015


I guess I am going to write about winter.  We have had snow on and off for the last few weeks.  Just enough that the local school kids have not had a full week of school in what seems like ages.   I am kind of glad we don't have to worry about getting the kids up and out to school any more!

I love how pretty the snow is.  At least when it is fresh.  Yesterday it snowed all day.  It was gray out because the snow kept falling, but the snow made up for the grayness.  This morning when I got up, it was a bright, sunny day.  Everything looked so clean and bright.  Snow with sun shining on it is beautiful.

Yesterday I went out back to knock the snow off of our Leyland  Cyprus trees.  When the snow is heavy, the trees bend and break.  We have lost a lot of them in the past few years.   This morning I had sore arms from  lifting a pole up high and hitting the branches!

I have probably written enough about snow this winter to bore everyone to death!

Snow party- nobody came!

I love the little peaks in the gate!

So, what else is going on in my life?   Today, March 6th, marks one year since I found out that I had a brain tumor.  And what a year it has been!   I have been having headaches for about the last two weeks or so.  I suspect it is from the changing weather. or maybe I am getting too used to the medication that I take to help with headaches.   At any rate, I will call my neurologist next week.

I am still working on organizing my study.  I think I have been at it for a month.  Maybe even more.  I don't know if I have too much stuff, or just not enough room for all of the stuff I have!  I have tons of scrap booking materials.  Albums, paper, adhesive, cutting systems.   And thousands of pictures.  So, even when I have all of my materials organized, I will still have to sort through the pictures and decide what to do with what.

Then there is the sewing stuff.  I have one drawer full of zippers and trims.  They were on sale.  the price was too good to pass up.   And thread.  I have a lot of thread!  Not to mention all of the fabric I have. 

I also have yarn.  And knitting needles.  And patterns.  And unfinished projects (that seem to be a theme here).

I have a lot of books about breastfeeding.  They at least, are not a "project".  I don't feel like they are waiting to be worked on.  They are there if I need them.  But, they do take up space!   And I have been doing some lactation work lately.  I love doing it.  I hate writing the follow up reports.  But that what I have to do if I want to get paid!

Here is my computer desk- before and after!   I put my computer tower on the floor, under the desk.  That was the first step.   Nick and I went to the Container store, and he installed the shelves above my desk  This is some of my breastfeeding library.  I have put more up since I took this picture.



Austin has been away for a few days.  He is visiting Richmond.  I know he needed to have a break form being home with us so much.   It is quiet when he's here, but even
 quieter when he's gone.

I have been spending so much time in my study either organizing, paying bills, or playing around on my computer.  Nick has been out clearing away snow.  Or watching TV in the family room.  We get together for meals.  We watch our evening shows together.   It would be nicer if we spent more time closer to each other, but we are alright.  We enjoy each other's company, but don't feel obligated to entertain each other.   I think that comes from being married for a long time.  We know each other really well.  We don't have to follow each other around like puppies as we did when we were newly married.  It's all good.

Always look on the bright side of life....

Sunday, March 1, 2015

a nice, calm, quiet and icy day

I woke up well this morning. I don't know exactly how to explain what that means.  I woke up to calm.  Nothing woke me up.  No dogs barking or people moving about the house.  I just woke up because my body said to.

It was so nice and I felt very calm and relaxed.  I couldn't believe how quiet the house was with nothing running.  No TVs or radios and even people.  Everyone was asleep.

It started to snow after awhile and switched to icy rain.  Bad stuff for walking or driving on.

I did get a shower and got dressed and did laundry today.  Nevertheless, it was a nice calm morning.

Not everyone who reads this knows about my thyroid issues.  I have a goiter, which, from what I understand, is the overgrowth of thyroid tissue,  I need my thyroid removed.

I will paste here what I wrote to some other friends.

 I have been to Washington Hospital Center in D.C. having tests and meeting new (to me) doctors.   Not sure if I told you about the endocrinologist I have seen there.  He came highly recommended by Kathy McCue, an IBCLC, PhD and nurse practitioner.   I met her an a Washington Area LC meeting.  She felt my goiter and said I needed to see her guy.  I couldn't get in with Dr. Burman because he is not taking new patients.  Kathy got me in and got me an appointment!

Dr Burman took one look at my goiter and said "why haven't you had that thing removed by now"!   He set me up for tests and sent me to a surgeon at the same hospital.   Friday I went in and had an ultrasound on my neck.  Met with a surgeon- who said I have multiple "nodules" in my goiter/ thyroid.  She sent me for a CT scan of my neck and one of my chest.  She is concerned that my thyroid may have grown down to my aorta.   That will effect how the surgery proceeds.

I really like the surgeon (can't recall her name at the moment).  She really explained everything in a way that made so much sense to me.  I really made me understand how so many of my other health issues could be related to my large thyroid.   She said that celiac and Hashimoto's disease (what I have) can be related.  She said she could see why intubating me for my brain surgery was so difficult. 

So I got back in 2 weeks to learn the results of the CT scans and at that point we will work on setting up a surgery date.  Because of my difficult airway, I will be intubated while I am still conscious, before surgery, then knocked out.

I am in a perverse way, happy about all of this.  If you have seen a TV show called "Mystery Diagnosis" you will understand.  In that show, you follow a person through all of the trails and difficulties in trying to figure out what their real health problems are.    I have been to numerous doctors who have just wrote me off for being concerned about my enlarged thyroid and just wrote me prescriptions.  This has been going on since 1995!

I finally feel like I have found doctors who listen to me and understand and help me find out what is wrong and how to treat it!

I am still having headaches.  I think partially due to stress.  I will make an appointment with my neurologist anyway, just to be safe.


Yesterday was Rare Gene Day, so I wore my jeans and special t-shirt for my grandniece 

Here's a picture of me in my Rare Friends t-shirt