Sunday, May 29, 2016

Memorial Day...A Time to Reflect and Remember

Here in the USA we celebrate Memorial Day on the last Monday in May.
It is traditionally a day to honor our fallen heroes, and you will see Old Glory waving her stars and stripes throughout every city in America. Old cemeteries will be tidied, and tiny flags will adorn each veterans grave. There will be parades with living veterans of our wars, and they'll be marching, and you will hear the distant forlorn wailing of bagpipes.
There will be silence to the rifle fire of a 21 gun salute, and finally you will hear the lone mournful notes as Taps is played from a Bugle.

Taps makes me cry. The very notes tear through my soul and bring forth grief.
Not just for soldiers, but also for loved ones I have lost. Family members I'll never speak with, laugh with, or see again. At least not here in this physical world.

It has been many months since I've visited this little blog. I have been well. My CA-125 is at 19 and my latest CT scan performed just last week is normal. A second remission. I am grateful.
When I awoke to the quiet coolness of the morning with distant trills of songbirds, I thought about this little place where I come to write my thoughts, and I pondered why I haven't lately.

I think that because I am feeling well, I just don't wish to remind myself of being ill. Is that selfish?
I hope not. The truth is, I appreciate this tenuous grasp we all have on our health and respect it.
But when I feel good, I want to live. I want to go for walks. I want to smile and laugh. I don't want shadows over my shoulder.
I don't want to worry about tomorrow or next week. I don't want to recall bad things.
I just want today.

So I chose this weekend to update. I will recall our fallen, and I will remember those who are gone.
But I will not dwell upon my own struggles of the past, nor uncertainties of the future.
Not today.
God bless everyone.
Love, Dixie

Friday, January 29, 2016

January Update and Musings

Well I continue on the Lynparza and my CA-125 continues to decline. My latest result is 26.
I feel I am in a solid remission. Overall I feel well. Occasional nausea from the drug but that is easily managed.
I have some fatigue which I now suspect is from low blood counts. My hematocrit has dropped from 34 to 31, which can happen while on Lynparza, as it suppresses my bone marrow.
Nothing bad enough to require intervention as of this writing. I just rest frequently and try to maintain a healthy appetite.
Wow 2016 already and January almost gone. The days seem to fly by. I look around and am grateful to be here.

Each day I awaken and give thanks for being here to see the day. I say "Thank you God for this beautiful day." I don't care if the sun is shining or it's pouring rain.
Each night I pray for God to make me a kinder person. Kindness and gratitude are two things I strive for more of, and I pray to pass it on to others.

I'm here for a reason, even if its nothing more than to write these simple posts that someone may stumble across one day.
Even if I can cause one person to give thanks or to show kindness, then I have accomplished something good.

So Happy New Year's Everyone. I am grateful to you all and the many kindnesses that have been shown to me. Namaste!


Sunday, December 20, 2015

In Remembrance of Dave

Today would've been my husband Dave's 61st birthday. For those of you who've followed this blog and the journal I kept at Caring Bridge, or even those who read Tales From the Teal Warrior, well I don't have to tell you what a terrific guy  Dave was.

Even though it has been over a year and a half since he died, it is still awkward for me to refer to him in the past tense. After all I did spend 36 years of my life with this man. Together we sort of grew up and grew old. We raised four wonderful boys who grew into the nicest young men any parent could hope for. We also shared many good times along with bad times, including virtually going through cancer together.

I felt tremendous survivors guilt after Dave passed away. I felt like there should've been something more I could've done to help him. Looking back I realize how naive I really was concerning the type of cancer Dave had and how ill he really was. But my very denial in a way, gave Dave hope and made him fight as hard as he could, so for that I am grateful.

I have a friend on Twitter named Teresa Lynn Johnson @TeresaLiveLyric who is a wonderful songwriter and Lyricist, and the other day she tweeted a link to her blog, where I read a song she wrote that reminded me so much of Dave, I just had to ask her if I could print it here on my blog.
Being the lovely sweet person that she is, she agreed. So today on Dave's 61st birthday, I'd like to share that song with all of you dear readers. Printed with permission of the author in its entirety.  Please enjoy.


Oh would you hold me
Yes hold me just like this
And would you kiss me
With a hungry lover’s kiss
Hold me, kiss me, lets forget
Pretend they haven’t told us yet
And when I’m gone, my love you’ll know
You held a deeply happy soul
Pour all your feeling into me
Hold me

Don’t hold me like a Mother holds a child
I won’t break
Hold me like the pride
That you have inside
No mortal man can take
Hold me like a dam that keeps
The flowing waters back
Hold me
Hold me just like that
This is what I need
When you hold me

Oh when you hold me
My mind wanders away
I think of others
Never being loved this way
Hold me, kiss me, yes I know
How blessed I’ve been that you’re my own
Before I’m gone, I want to prove
My life was great because of you
No way could I have been more pleased
Hold me

Don’t hold me like a Mother holds a child
I won’t break
Hold me like the pride
That you have inside
No mortal man can take
Hold me like a dam that keeps
The flowing waters back
Hold me
Hold me just like that
This is what I need
When you hold me

When a girl seeks love
She can only pray
To find a man
Like you someday
There’s nothing more beautiful, serene
Than to leave this earth
Being held
In the arms of the man who loves me
Yes this is what I need
For you to hold me

You can enjoy more of Teresa's beautiful songs at her blog http://livinglyricallyteresalynnjohnson.blogspot.c
God bless you all.

Saturday, December 19, 2015

Remission. NED. Beast back in the Cage....etc...

9am on Friday December 18th 2015
Phone rings. Caller ID says Dr. B.
Person:(after identifying themselves) Hello. Is Dixie available?
Me: Speaking
Person: Hello Dixie. I'm calling from Dr. Blanchard's office. I have the results of your last CA-125
Me: (deep inhalation) Yes?
Person: 33. You are within normal limits.
Me: (dumbfounded) 33 you said?
Person: Yes Dr. Blanchard said you would want to know right away.
Me: (Numbly, calmly) Yes. Thank you very much for calling.
Person: Have a nice day.
Me: You too. Goodbye.

I disconnect. I realize I've been holding my breath and I quickly exhale and breathe in.
First normal reading since January.
What do I feel? A deep sense of wonder and gratitude.
"I'm better" I think to myself. "I'm in remission!" NED (No evident disease)
I quickly call and message everyone I can think of. I announce it to all of the wonderful people on Twitter with a pinned tweet.

Now true I still need to get a CT scan to see the actual state of the disease but I know it is going to be stable. Deep inside, viscerally, I just know this.
I am so happy and feel so blessed. I walk around all day just giving thanks.

How long will this remission last? A few weeks? A few months? Hopefully a few years. More than a few years. I am just grateful. I have won this round. The beast is back in the cage, where hopefully it will remain.
Though I will remain a diligent watcher, I will not obsess about this. I will get back to the business of enjoying my life. And supporting others who continue their fight.

God bless and keep you all.
Life is good and worth fighting for.


Sunday, November 29, 2015

Update:Lynparza. Magic Bullet?

Hello everyone. Hope you all had a lovely holiday.
I did. Except for the sleeping part, which apparently I do quite a bit of now that I've started Lynparza as my main defense against ovarian cancer.

My package of pills arrived via FedEx last week from a pharmacy in North Carolina. Only a handful of pharmacies in the states dispense this drug so it must be shipped.
I began them the following day after filling up my pill dispenser so I won't forget to take a dose.
They are a white capsule that go down easily. Which is good, because I have to take 16 of them daily. I take 8 in the morning and 8 more, roughly 12 hours later. I'm trying to stay within the same time frame at least with an hour leeway either way.

Lynparza was fairly recently approved here in the US for treatment of ovarian cancer for BRCA positive women who have had 3 or more different types of chemo in past treatment. Lynparza is classified as a PARP inhibitor. Skipping a bunch of long-winded medical jargon here, it works directly on the DNA of the mutated cells to prevent them from repairing themselves, thus causing them to die. Which is the goal. Cancer cells being the damned little mutants that don't need to be going forth and multiplying.

 I never did get my CA-125 down to 35. Not quite. Stuck at 40 last time it was checked, though I was assured that 40 was really no worse than 38. But it matters a great deal to me.
 Dr. B. decided to give me a break from the in-hospital chemo sessions, and started me on the Lynparza  which will hopefully drop that number for me.

My biggest side effect issues right now are extreme fatigue, (I'm talking 4 hour naps here) and increasing shortness of breath on exertion. The daytime napping naturally leaves me with insomnia at night. Which is now becoming problematic as it is difficult for me to get things done.

The shortness of breath is definitely not good either. I can't climb stairs without stopping halfway and sometimes even walking from room to room leaves me exhausted. I'm going to set small goals for myself. Like writing this blog update. Only began it 3 hours ago but I am seriously tired here so I've taken frequent breaks to lie down.

Now true, It's not like I've written my college thesis here, but I really feel like I've accomplished my goal today as soon as I hit publish. Maybe tomorrow I'll manage to get dressed.

Update completed.
Goal completed.
Have a wonderful evening all. Blessed to be here!
My Thanksgiving Day photo complete with new hairdo thanks to Keri!

Wednesday, November 25, 2015

Giving Thanks at this time of year and Every Day!

Thanksgiving is to be celebrated tomorrow here in America. It's a day when families gather together to laugh, cook, eat. Watch football. Eat some more. Semi clean up. Moms will groan over what to do with the turkey carcass. Dads will nap. Everyone will eat yet again.

In some families, usually the women (but sometimes the guys too) will pour over the store flyers looking for the Black Friday deals, and make plans to be up and out the door before sunrise, and hopefully beat the yearly stampede into stores that will be open bright and early.

Holidays are hard for me still. This is my 2nd Thanksgiving without my husband Dave. I'm no longer "Moms" where everyone gathered. Due to my ongoing illness, I am officially Granny who tags along and tries to help but really just gets in the way. So I go sit down and enjoy my grandchildren.

But I am grateful. I have a family that love me. I have somewhere to be. Many people don't and I pray for these people each day. Also I am still here to enjoy these moments. More memories to make with my children and grandchildren.

Last week my brother Alan, his wife Ellen and my sister Jan drove all the way up from Georgia to see me. I only hope I was able to convey to them how much this meant to me. I had not seen any of them since our mother passed away in 1999.

Time has a way of slipping away from us and if you are hit with fighting a devastating illness, it flies by. Before you know it loved ones have passed or are in ill health. Travel becomes impossible and the next thing you know, the time to have done this has come and gone.

So I am doubly thankful this year that I was able to spend time with them. It was warm. It was comforting. It was what family is all about. So have a wonderful Thanksgiving this year everyone. Count your blessings every single day.

God bless and keep you all.