Tuesday, December 11, 2012

punting the tumor

It has been six months since my last brain scan.  A week ago, my most recent scan  took place. Today  a doctor reviewed it with me.

My brain showed "subtle" changes, which scared me to learn, because I heard this kind of doctor code leading up to my second surgery. The changes may be scar tissue, or recurrence, two oncologists couldn't decide. Medicine is art as much as science.  Doctors don't know everything, yet we expect them to. Patients put their trust in them.

Leaving the oncologist's office today, I felt like I got no information, except I can hurry up and worry and wait until March, when another scan and visit with doctors will reveal all--or not. This is what I mean by punting the tumor.

I am pleased that no medical professional has suggested getting a third surgery. As of right now, I'm not interested, but I'll jump off that bridge when I get to it.  Despite two surgeries, I am living a good quality of life. I take daily walks and enjoy family and friends, a book group and writing this blog, and a "book".   I honestly believe that my quality of life following third surgery would be worse than any benefit gleaned from it.

By the way, I'm taking chemo this week.

Monday, November 12, 2012

Not home for the holidays

Thanksgiving and Christmas will be different in the Godbey-Jones household. For the first time EVER, ewe will have the holiday dinner at a restaurant. If this experiment works, then perhaps we have started a new tradition, if not, then t back to the old tradition. 

My sister has always hosted Thanksgiving, and we host Christmas, but last year she tried to put together the big meal, while guests were staying at her house, and it was obviously a lot of work. Also, our parents live in apartment, without a traditional oven, or a dishwasher. Our kitchen and oven aren't big enough, (my sister has two ovens), so there you go, we will try something different.

We usually host Christmas, but this year, we will go to Chicago, because it's getting harder for my mother in law to travel, and we're overdue to go there for the holiday, as we haven't been since before Bruce and  I were married. Since we won't be home, we probably won't decorate the house. We aren't trying to be scrooges, but it just doesn't seem to make sense deck the halls, when no one will see them.

However you celebrate the holidays, enjoy and be thankful for each other!

Friday, November 9, 2012

Last installment of the reptile list series, for now.

This will be my last entry, because it occurs  to me that this list is judgmental. I hope my true friends, and my family know that I am not.

Today I mention former senator, John Edwards. Call me nutty, but I don't see how having a cancer-stricken wife is an excuse to cheat.  As a cancer patient, I know first hand that the disease takes its toll on marriages, but when it started to hurt mine, my husband and I went to counseling. Edwards cheated and lied, to his family, his supporters, all in the hopes no one would find out, and he could become president. I think his wife, now deceased, was just as ambitious about being First Lady, but still she was clearly hurt.

Adding insult to injury, it was the National Enquire, of all rags, that exposed him.

I know it's a tall order, but please give me some truth and authenticity in our politicians. Maybe someday.

Thursday, November 8, 2012

I'm taking a detour from my reptile list to share some thoughts about the recent presidential election, in a place I hope is a safe and appropriate place to share my thoughts.

I very much understand that those who disagree with President are very passionate, and I'm assuming that they voted for Mitt Romney, as is their right. Some think this country, as we know it,  is over; that we are now a socialist nation, under the command of someone is who isn't Christian, or American; that we the people are takers, not makers.

I don't believe America is a socialist nation. Sweden may be closer to that model, but many are upset at the notion of the government trying to provide healthcare to its people, thus the concerns about socialism.  People want goods and services, but don't want to pay for them. Easier said than done. I would not want to live in a country with no government. I'm willing to pay taxes to promote the "general welfare" of my fellow Americans.

Regarding the president not being a Christian, didn't people kick up a fuss about his Pastor? Somehow, some people think that because Obama's father was Kenyan, he (Obama) is a Muslim, or maybe it's because Obama lived for a time in Indonesia. I believe people of all faiths should be welcome here.

Which brings me to Obama's citizenship. He produced a long and short form of his birth certificate, plus unless someone can argue the point Obama's mother was born here, Obama is a citizen.

I didn't vote for Romney, because since the economy is so bad, and Americans dislike taxes, it didn't make sense me to run a candidate who only paid 14%, according to the tax return he provided.

Enough. I've said my piece. This was way too long of an election cycle, and too expensive. My friend Rich said it best.

If your guy won, congratulations. If your guy lost, my condolences.

Tuesday, November 6, 2012

Another reptile

Today I give the nod to Ann Coulter. Please don't buy her books, and members of the media, please don't invite her on your program. If she is that good at writing books, she shouldn't need to yell it at the top of her lungs.

Still she'll say provocative things, not to start an intellectual argument, but to promote her books that bash "liberals". If someone questions her, she'll harp, "Read the book!"

News outlets invite her on, thinking she'll bring in ratings with another incendiary comment about gays, our president, or 9-11 wives. Just boycott her. She has nothing new to move a conversation forward. Confession:  I have never read one of her books, but I have read her columns. I can't believe she believes what she says or writes.

Tuesday, October 30, 2012

my reptile list part one.

This post will take some explaining, so be patient. In college, I wrote for a conservative student newspaper called The Commentator. There I met a guy named Duane Dungannon, who frequently described other men as "loathsome reptiles".   Today I start my reptile list, to generally include both men and women, who seem to be missing  common decency, and a moral compass.

After much consideration, my first entry has to be Arnold Schwarzenegger. It's bad enough he cheats on his wife, in their house, but then he goes and writes a book about it, in which he almost proudly admits to further indiscretions. It takes some brass balls to add insult to injury like that. All the while, he purports to be learning from his mistakes. Some egos are just too big.

More to come....

Sunday, September 2, 2012

Veruca's last stand.

After years of trying everything, from painful laser treatments, to weekly freezings and burnings(also painful), it's time to cut Veruca out, like my brain tumor. I have a pre-op physical 9/4...pro-op with surgeon 9/24 and surgery 9/28, with a 4-6 week recovery time. During the healing process, my husband will need to take a business trip to Israel. Once again I will need help, but I have a plan.

We had to juggle the surgery time around my chemo, and the end of September made both my Oncologist and the surgeon happy. I will be given anesthesia (yay), and a knee scooter and a boot. I will miss being able to walk, but I was able to do plenty of walking and overall had an excellent summer.

Good Riddance Veruca, my plantar wart of doom!

Friday, August 31, 2012

A Republican's Worst Nightmare

Election season makes me pissy. I've heard so much rhetoric about "Obamacare"and "job creators" that I can't seem to fit in with any political party, but especially the Republican party.

I get social security benefits, and medicare, which last time I checked are government programs. My Bad. These programs cost taxpayer money, and something needs to be done to keep these programs from going bankrupt. So, by extension, taxpayers are helping me, and they are pissed. They maybe wonder how a disabled person like myself can walk a few miles a day, take a nice vacation with her family, and get government benefits.

Two things.  First, my family pays taxes, even on my benefits. Secondly, I challenge anyone to have two brain surgeries(with more potentially on the way) and have the capacity to get through a day's work. I sometimes think the strange hours I worked in television contributed to my illness. I worked late nights, early mornings, 12-hour shifts, with constant audio-visual stimuli. No wonder I broke down.

I understand the Republican wish to reign in wasteful spending, but the party loses me, when it comes to its stances on social programs, and the role of government. When I was a college kid, and had the world ahead of me, I never envisioned needing any help.

But then, as a 32-year-old working mom, I began having seizures, which I would later find out were triggered by a brain tumor, a cancerous one, for which I am still undergoing chemotherapy. I need help-- to drive to the store, see friends, and get to doctor appointments.

Should I be ashamed that I need help?

Time will tell, but I don't think I'll get much, if Republicans are voted back into office.

Sunday, August 26, 2012

summer night

The open window
allows a warm comfortable breeze
to caress my skin.

The natural sound outside
of birds singing
promotes sleep
when many nights, a good rest alludes me.

Like water in the desert
Like ice cream to the child
such a feeling I'm experiencing
only in this moment.
too perfect to return again.

What if?????

What if the boy I had a crush on asked me out?
What if I didn't have Turner Syndrome?
What if I kept my opinions to myself?
What if I could drive to anywhere?
What if I had a high-profile job?
What if I could undo any hurt I have caused others?

I know it's a waste of energy, but it's human to think this way; If only "this"were different, than things would be better.

But it is what it is.  Oh! how I hate that phrase!  To me it suggests that one should not strive for change, but just suck it up. I would like to believe that change is possible, and even a good thing.  I don't want to just accept, because, sometimes in the poker game of life, many hands are shitty.

I have to count on my shitty hand winning.

Wednesday, August 15, 2012

Traveling Jones's

It seemed right after my son graduated 8th grade, we went trekking. First stop--a cruise of  Hawaii.

We started in Honolulu with a tour of the Arizona Memorial, a must-see. The tour started with a very emotional movie, with actual footage of the attack. Even my son was moved.
The Arizona Memorial, from a distance.
A wall in memory of those killed in the attack.

The U.S.S. Missouri

Next stop was Maui. While there, my husband Bruce took  us for a looong walk to find the shirt shop, Hilo Hattie. This was despite the fact we passed many decent souvenir shops. We all got tired of walking, but finally found the store, made some purchases, and yelled at Bruce for the goose chase. Family Fun. We also took a boat trip for some swimming and snorkeling.  I don't snorkel, because I don't know how to breath properly with the mask and tube, but I wanted to go into the water anyway, so I did with my suit and cover-up. I was surprised that I was not provided with a life jacket, but "noodles" instead. I managed to swallow lots of salty water and get half an ocean's worth into my eyes. I very quickly climbed back aboard, as did my son.

The ride back to the dock was nasty, as we were against the wind and current. One man desperately tried and succeeded not to barf.  I don't get seasick, but got so wet, I felt like a crew member of "The Deadliest Catch".

(above) Turtles at a Maui Aquarium
(below) a beach we stopped after a long walk around Maui
These next six are from a Luau we went to in Maui.  My mother -in-law liked the show, but not the food.

The next port of call found us on the Big Island. On one side is Hilo, where it rained a warm tropical rain, as Bruce, his mom, and I took a volcano and coffee bus tour. Bruce and I got out to walk through a rain forest on a trial circling one of the volcanoes, not far off, we felt our way through a lava tube. I say we felt our way, because I was a dumb ass, and didn't bring my regular glasses, I wore my sunglasses erroneously thinking it would be sunny. Well, it wasn't, especially in the cave.

inside the lava tube.
 At crater's edge.

 The Mister at a viewpoint.
More lava tube.

Next was a lunch featuring a delicious  purple sweet potato salad situated next to an out of the way art gallery, were we had wine and browsed, and purchased a gift for the neighbor girl, who watched the cat while we were gone.

Donkey balls=Chocolate covered macadamia nuts.mmmmmmm!
Austin, our son, not having so much fun on the boat.

Kauai, the final stop
One should not miss Wiamea Canyon!

From left to right:  Kim, my sister-in-law's partner, me getting tired of something, my sister-in-law Linda and my mother-in-law Marilyn.

Kauai is my favorite of the islands. The colors are beautiful.  Though I'm afraid of heights, as is Bruce, we took a helicopter trip once to get an ariel view of the canyons and waterfalls. We didn't go up in a copter this trip, but our son did with his aunts and liked it. The nice part of cruising Hawaii is that there are many opportunities to get off the boat and explore the islands. As I get older, I'm getting so I can't stand crowds, so I'm not a big fan of cruising, but we got some major family time. Nice, because my mother-in-law can't travel comfortably anymore.

After lots of family time, Bruce and I had some alone time in California wine country, after the July 4th holiday,  while our son hung out with his cousin at my sister's beach house. We stayed at a Best Western bed and breakfast, a very nice change from sleeping in twin beds on the cruise ship. The following photos are out of sequence.

 Sparkling wine tasting for a gift for my sister
This was the best shot I got of the grapes that go into the wines. This was taken at the first winery we visited on our wine tour, Arger-Martucci.
 The wines.
 The brothers running the shop.

 A not-so-nice shot of my hand. I must have had too much Cabernet.
Our time in California ended with sparkling wine tasting.We managed to find a place from where we could ship.
Overall, I had a great summer, and my oncologist let me skip chemo for the month of June. Yay! I have no complaints.

Monday, May 21, 2012

Faces of Turner Syndrome

some secrets should stay secrets.

I have Turner Syndrome. If you don't know what it is, it's a genetic disorder due to a missing chromosome. For more info, try searching the Internet. Having this disorder makes me who I am, from my short stature, to being barren. Yet, I feel uncomfortable advertising it, because I don't want to be thought of as a syndrome, but as a person, but even when I look up TS on the Internet, I am shocked by what I see and read.

Example:  I found a piece on You Tube called "The Faces of Turner Syndrome". The video shows various women and girls saying things like, "I'm your teacher",  "I'm your nurse," etcetera. The beginning and end slogan is a young girl saying, "I'm like you, but I'm NOT like you." Exactly!  But should I let the public think I'm just like everyone else? In doing research for the book I'm writing I found out t,hat many girls with TS are miscarried, but yet I'm here. To hell with Survival of the fittest! Sometimes the weakest links survive.

But because I see so many doctors and I take so many medications, I have had to let the secret out. For example, a good doctor will want to know what medications a patient is taking, and the reason for taking it. Sometimes I am asked if I'm pregnant, or wishing to become pregnant, and I have to read chapter and verse on Turner Syndrome. There are a few doctors who don't know what the syndrome is, but that is a subject for another post.

I liked the Faces of Turner Syndrome video enough that I posted it on my Facebook page, because some of my FB friends are in the TS community. Nevertheless, in the future, I think I'll be quiet about it. Most people like to use FB for lighter banter.

Sunday, April 29, 2012

moving on

As I write this, it is a Sunday. In two-days time, my beloved parents will move out of what was supposed to be their retirement home, and move IN to a retirement village, where their meals will be provided for them, and transportation provided, as needed.

This is all mostly good. Mom and dad will still  be living together, but the move was mostly prompted by my dad's declining health, and my mom's increasing lack of ability to take care of him. He has dementia, diabetes, glaucoma, and a history of heart disease. My mother has been the one to remind him to take his medicine, and take his verbal abuse, when symptoms make him frustrated. The house they live in now works fine for folks with physical disabilities, but not so much for people with  these kinds of issues.

I credit my dad for wanting me to be smart, go to college and work. He also passed on to me his love for music.  However, he cannot always remember that I have cancer, or how I am being treated, and that makes me sad. They will be closer to me, and my mother still plans on driving me places that Bruce can't.

I'm 45, but I still need both my parents, and love them.

Tuesday, April 24, 2012

Big Government

I've wanted to post this question on my Facebook account, but it's too political.  The question is: How is government run health care big government, and mandatory ultrasounds NOT big government. The stereotype is that the Democrats  want to rob Peter (you) to pay Paul (the less fortunate) and that's bad because the government shouldn't be our nanny. If you need help, it's your own fault, so just get a job.  It's that easy.

On the other hand, the lawmakers who make these kinds of arguments seem to be the first to want government in our bedrooms and lately, women's bodies. State legislatures around the country are trying to pass laws that would require ultrasounds and waiting periods before getting abortions. In Arizona, a law recently passed goes so far as to redefine when pregnancy begins. Personally, I am not for abortion, but I don't think women who have abortions do so easily, or without emotional or physical distress Call me crazy, but I don't think it's the government's business to make laws regarding our junk. I want to be in charge of my own body, whom I love, and whom I do or do not worship.

And I am not a republican, because I think the party wants to control the most personal parts of my life. If the Democratic Party is for Big Government, the Republican Party is too.

Monday, March 19, 2012

Cracks in the foundation

We grow up thinking that our parents are like super heroes. Just a hug from mom, or some words of praise from dad will make everything better. If we are sick, the parents' magic will  make us well. Nothing hurts as much as their disappointment.  They seem perfect.

But once a person gets to be my age, the parents are older too, and their perfections have perhaps been eroded by age, and frequent use.  A grown child's system is shocked to see that the people she counted on to kick her butt, and help her in so many ways, simply can't anymore. They need some help themselves.

In my case, my father, who is one of the coolest, funniest, and smartest individuals I've ever known, recently made the painful decision that it was time to give up driving, for safety reasons. He has vision problems, and is forgetful.  Meanwhile, my mother, once again has to be an emotional rock,exercising patience, when she wants to scream. She has had to do that too often. She deserves a break.

My husband's mom is currently laid up in a PT facility, following a second fracture in her back.  As of this writing, It does not sound like she is much better. Her back is basically as brittle as fire kindling. She has always been good about flying from Chicago to Portland to see us. We will have to start taking more trips there.

Having a life-threatening illness, I'm one to celebrate being alive.

For some, though, getting older sucks.

Sunday, March 11, 2012

Lose a brain, gain a beemer.

Ever since I can remember, my husband has wanted a BMW. He first got the bug when our son was two years old. We headed into the sunset one day doing errands and we pull into a BMW (beemer) dealership.  He looked at a 2-series, because it was the only vehicle remotely in our price range. I killed Bruce's joy by asking to see the trunk.  It can't hold groceries, much less toddler paraphernalia, so no beemer, for now.

Flash forward to the present. My son is now 13, and I am not safe for the road, due to having a massive gaping gash in my head. I see no need for us to be a two car family.  I was pleasantly surprised when Bruce sold his Audi A4, which he liked, as it was sporty enough for him, and began driving our remaining vehicle, a Honda CRV. The Honda had roominess and fairly good gas mileage, but was apparently no fun for Bruce to drive. Lately, Bruce has been feeling confident enough in his job, that he is ready to take on the encumbrance of car payments. He goes out test driving while doing errands with our son, and it's all over! Bruce is in love, and when one is in love, no expense is too great. He takes me to see the car of his dreams. The only thing I care about is can anyone sit behind Bruce? Another is how much can we get for the CRV? Still another is the trunk size?

We were very pleased with the amount of our trade in, and so a love connection was made between us and a 528 sedan, thanks in part to the fact I cant drive anymore.  My days as a chauffeur are over. That door of independence is now officially closed.

Sunday, February 12, 2012

I could write a book

I've been neglecting my blogging duties. I started a big writing project in November, and still working on it. I am trying to write an interesting book about me. It contains 6000 words so far, and is broken into three parts.

  • being born with Turner Syndrome, a genetic condition that accounts for as many as 10 percent of all miscarriages. Yet, I am here. Though, one cannot be born with a genetic defect and live a completely normal life, and sometimes I have struggled to live among the "normal" people.
  • living with brain cancer. Bam! One day I was well, the next day I was diagnosed with a life-threatening illness. I now have a huge piece of a brain missing. Think of how frustrating it is when your computer doesn't work, and you will have some idea what it's like living with cancer.
  • parenting an adopted child. Having Turner Syndrome comes with infertility, but I still wanted to be a parent, so my husband and I adopted a son. Although every child is a gift, adopting a child is bittersweet and complicated. My book will describe some of the hiccups and speed bumps we have encountered in our parenting adventure.
So, I will probably be blogging more sporadically. I need to focus. I wonder who would want to read it, if and when it gets finished.

Saturday, January 14, 2012

twists and turns in our adoption story

About four years ago, we were going to visit our son's birthmother.  We scoured our letters from her and tried every number on the letters with no luck. The purpose of the visit would be to meet our son's half-brother.

We thought she had disappeared. Letters kept coming back to us.  We got hold of her husband's phone number and called him.  He is the father of Austin's half-brother.

Shocking news.  Austin's birth mother is in jail, but for what, we don't know.

Until she writes to say that she was in a house where a fatal shooting happened, and did not contact authorities, therefore, making her an accessory.  She asks us not to tell Austin. I'm thinking she didn't want him thinking poorly of her.

After asking a professional for advice, we kept this secret.

But Austin did a Google search, seeking information on the ethnicity of his birth name (Kantak), and his birth mother's name came up, complete with her record.

"I found out about my birth mom," Austin announces.

As he's telling me this, it becomes clear that he thinks she has committed a murder and been sentenced to die.

Oh My God!

I tell him that she was in a room where a murder happened, but she didn't do the killing, and as for her sentence, I don't know what it is, only that she's appealing.

Yes, he is upset that we didn't tell him sooner, Yes, he is wondering if he will end up like his birth mother.  He is her blood kin, but choices play a big role in the mark we make on the world.  He will not necessarily be affected by his birth mother's choices, so much as the environment in which he grows up.