Talking about Death....And Living

 I have a very special and dear friend in California.  She knew me before cancer and before cancer I can honestly say I felt like she was a soul sister.  She was my confident and teacher.  She still is to this day.  When we talk the calls grow into discussions of "important" matters, God, Helping, Living, Peace, Being a change agent in some capacity, doing the best possible, living art, being art, laughing at what cannot be changed and finding love and joy in whatever comes.  

Griefwalker by Tim Wilson, National Film Board of Canada

She posted a private message on Facebook of a fascinating video about palliative care.  I respect that for some it may not be something you want to see, but if you can, listen.  I felt a sense of peace about death after the video, just a little more peace.  That peace is priceless.  Healthy or not healthy, I believe this short film will bring you something good.

My dear friend brought something very good to me and I want to thank you so much  Barb!  Hugs and Peace to you.  

To you my dearest readers and followers, my heart is with you. 

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!!!!

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