Change Is Certain

My sweet Marilyn, exhausted after watching over me literally all of Saturday into Sunday.
She never leaves my side when I'm really sick.  My sweet kitty kat...

Here I am, listening to an MP3 of the Album from "Love Actually."  Not the original artists, but it will do.  The music from this movie is so perfect, actually.  I needed to give myself some down time this evening to partake in an activity not related to cancer or paying bills or cleaning.  Over the years I have neglected music, neglected listening to music that makes me happy or want to dance.  I have not a clue as to who is hip or popular right now.  I used to know all that stuff, but after I got cancer I just lost interest.  

Balance is lacking in my life, so one area in desperate need of attention is music, so here we go.  I added the amazon cloud player to my roku and will be streaming my favorites, in addition to using Pandora more.  Gee, I remember in the early 90's I must have had hundreds of CDs, some old vinyl and even a few 45rpm records.  I miss them.

I knew all the songs on all the albums and CDs.  I knew the good stuff, not the stuff that got air time, but the real music that you had to look for.  It was easier then too. No programming and uploading and downloading and managing a playlist.  It was called a record or a CD.  You either popped it on top of the record player or put the CD in the CD Player.  But, we must adapt to change, whether it's in how we listen to music or cope with an ongoing medical challenge.

I had chemo last Tuesday, after CT scan on Monday and oncology appt prior to chemo on Tues.  Last week was just plain old busy.  Had to work too and go again to the cancer center on Thursday for hydration and neulasta.

Regretting not getting the extra IV of Emend.  It was scheduled for day 5 or 6 post treatment and we weren't there yet.  I felt like I was managing, so I went ahead and let it go.

Just like clockwork, I woke up Saturday morning, feeling like a clamp was on my head, nauseous, barely able to get up for water and meds.  Slept through to Sunday noon, except to call work twice to call in sick.

It is Sunday night, feeling queasy, but able to be up.  My sweet mom bought me some soup, mashed potatoes and flowers.  How sweet.

So what did the doctor have to say, you may be wondering?

Well, she had great news!  On Lipodox, my tumors are slowly either shrinking or have stopped growing.  Progress is defined that we are reversing a trend.  We discussed in detail my quality of life, because this last treatment was the 11th treatment in a row.  How am I doing on Lipodox was the key question for me to answer.  My question was "how is the Lipodox doing?"  Everything was clearly answered and I feel good about my decision.  I will continue on Lipodox for 2 to 4 months at least.  Will see oncologist again in March.

I can manage the side effects, but not without "help".  I can't work more than part time and sleep all the time.  I do have the option to halt treatment to give me a break but she was fairly clear that if I stopped, even for a bit, I could develop a resistance to Lipodox. That would leave the tumors alone to continue on their path of destruction, not the best idea for now.  

I am going to do all I can to support the chemo, possibly ridding my diet completely of process sugars/carbohydrates.

So as I look at my lovely Christmas Tree, listening to "both sides now", I am feeling once again that I need to re-establish my footing.  After I take down the tree and tackle some paperwork this week, I am going to work harder on the basics.  Sleep, exercise, nutrition, happiness where I can provide it and receive it.  Spiritually I feel less whole.  Only because I have not gone to mass often enough.  

So for those of you who are effected by ovarian cancer (any cancer), first time or recurrence, things change.  For better and for worse, it is constant.  I have learned since the fall of 2009 that there are predictable outcomes, but may outcomes are positive.  I don't put myself in a box anymore, but being too aware of statistics hinders me a bit.  Oh well, have to be informed.  What I am trying to say is to set aside what doesn't matter, keep good notes and be open and flexible.  Trusting your medical team is critical in this process.  I fully trust my gynoc-oncologist.  

My prayers were answered.  Last Tuesday I asked God if he would be kind enough not to give me bad news.  I literally said that if the tumors are still there, that is OK, as long as they aren't growing.  God is Good. 

So the plan is to take each treatment one month at a time, do the best I can to live a healthy life and continue to pray and seek support as needed.  I am also getting some additional help for little panic issues, which is very valuable.  

Mom is healing, life is getting more stable and all I want is for my family to find peace, joy and love.  

I pray each of you find a way to cope with certain change that comes with each new day of our lives.

Love you much,
Denise

Screening for ovarian cancer, Huge News!!!!

Visit NBCNews.com for breaking news, world news, and news about the economy

Patches of Blue

The warehouse was grim and dark.  Round tables covered with tattered cloths were scattered throughout.  The large room was divided into one third and two thirds.  At each table sat someone that I had somehow met in my life, many of whom I did not remember.  The attendees were all decked out in fancy clothes and sparkling jewelry.  Each looked at me as I moved through the room.

I saw one man with diamond rimmed eye glasses and a white suite.  Everyone had aged at least 20 years since I had seen them last.  One group of people walked by, and in the center was an old crush, he still had the same blue eyes and striking white hair.  He walked past me, glanced at me, and then continued as if we had never met.

One of my very best friends had lost a bunch of weight and she donned a golden dress and glamorous hat.  She walked to the back of the room and into the smaller third of the building.  Just as did my old crush and several other people who I deeply cared for.  As the ones I knew closely went to the back and out of view, the one's I did not recall seated themselves at the tables in the front two thirds of the room.  The walls were not painted and the floor was cracked.  One long bench ran the length of each wall.

On the benches were men with knives and women who carried bright blue books and little blue patches that looked like band aids.  I would find out that the patches were the difference between life and death.

I stood there for the longest time and watched carefully as each person entered the room, and I watched where each either sat or disappeared into the back.  My sweet kitty cat Marilyn was with me, in my arms, watching over me, like she always does.

One of the men stood up from the bench and said something to me in a language foreign to me, and it was not something good.  I became very fearful as he grabbed me and put me in a choke hold. I could see a knife coming into view from behind and knew he was going to slit my throat.  Just as he was about to cut me, one of the women with a blue patch and blue book waved her hand at him and quickly placed the patch on my neck.  The monster stopped and backed away in anger.  I was shaken and scared.  I ran off towards the back of the room and the patch fell off of my neck.

Just as it hit the ground, another man grabbed me and tried to use his weapon on me, just exactly same way.  I felt like I was in one of those wicked video games, the hunted one, the prey.  My attacker was not human, more of a robot, mechanical in nature.  Each time as before, a black scarfed woman placed a blue patch upon my neck and the attack was stopped.  The man would sit back down and glare at me.  All of these attackers were following me, each with a knife.

These attacks happened repeatedly as I walked from the front of the room towards the back of the room to be with the people I knew.  With each blue patch only lasting a few moments, I was quickly attacked over and over and over and over.

Exhausted and frazzled to the bone, I finally entered the back room.  I was carrying my cat and as soon as we crossed into the safe zone, she jumped out of my arms and disappeared into a fog.

The smaller room was freshly painted, and filled with my friends who were laughing and having a good time.  My old crush was off in the corner with his girlfriend and my old friend was dancing in a conga line, still wearing her golden dress and hat.  We will call her Kairee.

Kairee had changed her life from when I had known her a long time ago.  She was very happy now, after losing weight.  She now was happily married and owned her own mortgage company.  She pulled me aside and said she wanted to give me a chance to get back on my feet.  She offered me a job but my heart sank because I hated sales and had done this before. I was not good at things like this, having never been successful at any job that was purely for the money.  I knew I would fail.  I had no choice though and could see that she was doing well, was stable and wanted for nothing.  So I accepted her offer.

My office was downstairs and she pointed me to an old wooden staircase deep in the fog.  She sat at her table, the room turned dark green, and her associates surrounded her wearing their black suits and high end shoes.  I did not receive a warm welcome, except for from Kairee.  She hinted not to worry and I went down the stairs.

The steps were many, probably over 20, straight down into the darkness.  The whole room was old, wooden, dusty and filled with furniture and broken crates and boxes.  A few light bulbs hung from the ceiling as I stumbled across what I could see as a floor.  I was lost and became swallowed up in the dungeon.

I became fearful that my cat Marilyn would never be found again, as I had seen her disappear in that fog and knew she had come down these stairs.  As I frantically started searching for her and calling for her over and over, screaming as loud as I could, "here kitty kitty, Marilyn where are you?", dozens of other cats appeared from out of nowhere.

Each cat had a feature similar to sweet Marilyn, but she was not in sight.  Each time I saw a cat, I would run up and try to catch it and see if it was her.  It felt like an eternity and I became exhausted looking for her.  I scrambled all over the place looking and looking and found myself running from the mechanical men with knives.  Once again being attacked and then saved by a blue patch.

While looking for my cat, one of Kairee's associates appeared to me and threatened me, saying I was not going to be approved by the company insurance policy and would not stay employed for long.  I was losing everything, my job, my cat, and fearing the loss of my life over and over.

Off in the distance was a fluffy old couch, maroon colored, made with cotton cloth.  

I pulled away the musty cushions and found my kitty cat and pulled her safely up in my arms.  Just as I did this my cell phone rang.  It was my brother asking how I was doing.  Thank God he called and woke me up from that awful nightmare.

I went back to sleep and did not wake up again until 5:30 pm.  That was my day today.  I have a CT scan tomorrow.  See my oncologist and get chemo on Tuesday.

Can't get that nightmare out of my head............sigh.

Hope you all had a better day...ha!

Happy 2013 Wish For You

Our family has survived one of the most challenging years of our lives.  Sweet mom on the upswing now after multiple hospitalizations, I am still on chemo, and other very endearing family members coping with new illnesses and lots of change.  We have also experienced joy with a very bright cousin moving on to Johns Hopkins, kids changing to better schools and opportunities to receive visitors from close family from far away places.

The little joys, coffee with mom, a short drive with my sister catching up and sharing a laugh or two, seeing my nieces and nephew play together, laughing and being real.  Hearing funny stories about aunts and uncles.  Seeing beautiful cards in my email box from a dear friend in California. Seeing mom get surprise roses from a friend.  Leaving the doctor office remembering the words, "things look better now".  Getting a text from dad saying I love you.  Getting to say I love you to my mom almost every day.  

Waking up to see my beautiful kitty kat purring over my face, hungry for her first meal of the day, but patient and graceful as she waits (except for the one day she nubbed my head with her teeth, guess I slept too long).  Marilyn gives me much needed laughter and love.  I feel like a little kid when I get to play with her.  She will chase a little ball.  She will run in and out of this little kitty tunnel, and have me chase her.  She will let me carry her around in little boxes.  (Still cannot download the video of her and singing around the tree but it is on my facebook page),

The little joys in life are what keep us going day to day.  My goal this year is to give more little joys than last year.  Leave my spaces cleaner when I leave.  Be even more polite and offer everyone a smile, even if I don't feel like it.

I am continuing chemo in January.  I am extremely fatigued, but am compensating for that.  I just work around it.  I make the most out of my awake time, work, be with family, and my kitty.  I work on my heartfelt causes to increase awareness of ovarian cancer and now have taken an interest in helping find peaceful ways to protect children in schools.

The tragic shooting at Sandy Hook Elementary School brought us to our knees.  This can never happen again. God Bless the survivors of Sandy Hook.

January is a much dreaded time of year, cold and dark.  It is the perfect time of year to clean out the clutter that takes us away from giving true love and joy.  I need to find more time to attend Church services, with my fatigue, I never wake up in time.  I have to do that, I dearly miss Mass.  But God knows how much I love him as I pray morning and night.  

My New Years wish for you is to experience and give more little joys to yourself and to those around you.  By spreading little joys, and giving more smiles, who knows how that one little action could energize someone to do something they need to do........because they felt a tiny dose of love.

Happy New Year to each and all of you.  I do love you all and pray that 2013 brings more joys, better health, more security and happiness for you and yours.

God Bless you and your family.

Happy New Year

Love,

Denise

My Christmas Wish

If this Christmas you had one chance to ask for a miracle, what would you say?  

My eyes are blurry from needing sleep.  How many of you are tired now, frazzled, conflicted? Are you wondering if you did what you needed to do to make those whom you love with all your heart to feel happy?  Did you do all you can to bring them joy?  Are there enough gifts?  Worried that someone special was forgotten?  Amidst all this are you weighted by the tragedy at Sandy Hook Elementary?  Wondering how those sweet families are coping?  Will they be able to rejoice in the birth of our Lord and Savior Jesus Christ?

This year has been really challenging for our family.  I cannot tell a lie.  My sweet mom, our heroin of life, our rock has been sick most of the year.  Long hospital stays, multiple heart attacks and serious complications from her diabetes.  We never made our trip to Bainbridge Island.  Today we were supposed to go out so she could do Christmas shopping for the first time, that was the plan. Instead she was once again very ill today and it broke my heart.  She has not yet had a chance to enjoy the celebrations of this holiday season.  I am praying on Christmas Day that she is freed from this pain and illness so that she can relish in the joy of seeing her grandchildren and daughter and son-in-law....and me too.

Many people in the family have been challenged with new illnesses, working more, surgeries and worries.  I have been in chemo since March of 2012.  Juggling chemo, side effects, fatigue, nausea, etc etc etc and working part time and fully participating in every way possible to help mom, in a way that works for her, has been rocky.  

Recently I am receiving psychological counseling to manage what may be true to the form anxiety attacks.  That sequence of abdominal pain followed by nausea followed by sweating and shortness of breath and panting, losing focus and just getting plain overheated all over is not actually a hot flash.  So now I am learning how to cope with that problem in a new way.  I never had these episodes before cancer. 

The blessing is that we are here to experience all of this suffering.  I know that sounds bad, but those sweet babies at Sandy Hook Elementary never had a chance to live long enough to experience such pain.  They are little lights in heaven with God.  

So now it's time to reflect on the blessings.  The pain and suffering that wreaks havoc on all of us is a blessing for Jesus suffered on the Cross for us, as God loves us so much that he sacrificed his only son to forgive us of sin.  We must forgive to find peace.  

So back to the first question, if you could get one miracle, one chance to have anything in the world, what would your wish be for Christmas?

I know what mine is.................I want for each of us to embrace the true meaning of love and keep that feeling for all of humanity, all living creatures.  Love one Another as God has and does Love You.  Rid yourself of hatred and destructive thoughts.  Leave nothing for the sickness to hold onto.  Love your neighbor as you would love yourself and trust in the Lord.  

I am so passionate about the future for our children to include loving environments and peace.  I got a little sidetracked but felt compelled to publicly state an idea that could help schools be just a little safer, without the use of weapons and armed guards.  This comes from a very deep core belief that children will be emotionally and spiritually scarred if they are constantly surrounded by people with weapons. It is wrong to do this to them.  

In order to foster a world of peace, we must trust, we must love one another.  It would be hard to create and nurture that trust and love while surrounded by guns.  It does not set well with me.  

I want our children to love one another!  I want you to feel loved, and that is my wish for you, to feel loved.  Know that God loves you, and I love you.

Merry Christmas to you and yours, and may all your Christmas wishes come true.
Love, 
Denise

.......................................................................................................................

https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl

Instead of guns, lets begin to bridge the gap from the horrors of yesterday to the peace of tomorrow. I am asking for people to join hands to create Rings of Hope, around their schools when the children return from holiday break. Parents, family, good citizens uniting together for the day to show the children WE keep them safe. No guns. No weapons. We can do this now. Keep watch and be their loving guardians while the other solutions are discovered.

We need to elevate schools and our children so that schools are a center of life learning, for not only math, science and language, but culture, arts, health, communications, sports, leadership and community building. This is the opportunity for growth.

Please go to Ring of Hope, Arms Across America and stand with and for the children at your local school, be their sentry for a day. This idea has incredible opportunities to grow beyond one day of strength. Please speak with other parents and see if they will join you.

All you need to do is just hold hands, be arm in arm, for the day that your child returns to school after the holiday break. When the children see how strong we are, and they see the love, they will feel safe. We don't need guns to help them feel safe.

Help to create a Ring of Hope around the school for that day.

https://www.facebook.com/RingOfHopeArmsAcrossAmerica?ref=hl

https://twitter.com/RingOfHope