CDC Symptom Diary Card

Sunday, January 13, 2013

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,

Sunday, January 06, 2013

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!