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Thursday, July 28, 2016

7 Year Cancerversary. New N.E.D.

I have to admit I am having a little difficulty concentrating because I just watched the Democratic National Convention and then stumbled across a live Periscope feed of Blake Shelton playing at the Grizzly Rose in Denver, Colorado. Wow! Love him! Talk about contrasting experiences.  He is now playing "Footloose", HA.  I am having a blast.

Earlier today a new friend from the Colorado Ovarian Cancer Alliance and I drove to Evergreen for lunch.  Evergreen is a quaint mountain town not too far from Denver.  It was very refreshing to get some mountain air and look at a beautiful stream.


It is my 7 year cancerversary! Praise God.  This time exactly 7 years ago I was headed to bed after prepping for my surgery. My dearly departed mom and her sister were with me the night before and took me to my surgery in the wee hours of the morning.  All I felt was their love and my fear, and I prayed for God's mercy to shine upon my suffering and to relieve me of this awful cancer.

Here I am today, going to lunch with a friend, watching political history be made and catching Blake Shelton via a technology that did not exist 7 years ago. Crazy.

I have learned that people living with cancer cannot look back but must look forward and reach out to as many resources as possible. This is critical because your condition is going to change, moving towards the better and then towards the worse, and then the better......etc.  It is just that, a constant adjustment to condition, treatments, surgeries, side effects new and renewed, and blessed breaks from the suffering. This is not predictable necessarily so other people have a heck of a time being able to plan how to be there to support you. It forces us all to be flexible, to live in the here and now and to be patient.

Not everyone wants to be patient, or flexible.  Living in the present is no small task, especially if you came into ovarian cancer possibly as a result of medical neglect, like I did. We go over and over and over and over the steps that led to this disaster. You may remember my story is defined by being told several times that I was "too young to have ovarian cancer" so they never looked when I kept telling them my symptoms.  Other things happened as well but it took a lot out of me and my family dealing with my rage.  I am so very sorry for that still.  Especially that my mom listened so much.  My cancer hurt her in so many ways.  God rest her soul.

Psychological counseling is necessary in most cases of cancer care, I personally believe. It is just too much to try to ask a single person or family to bear on their own.  Cancer offers no certainty and everyone in the patient circle of support is effected, and in different ways.  I wish that psychological and spiritual counseling were mandatory offerings for patients and their loved ones.  One day I hope.

My faith in our Lord Jesus Christ has sustained me this whole time and without Him I am not sure I would have survived.  He brought to me the gynonc and care providers I needed to heal and still does.

I am currently on a break from Avastin for several reasons.  The first thing is that my recent scan showed no evidence of disease. Glory be to God. I am thrilled. I cannot believe it. Avastin has chipped away the tumors one tiny dot at a time.  Amazing!  My recurrence began in early 2012.

After having 45 or 46 Avastin treatments my blood pressure has begun to rise and my urine protein is increasing.  Those are concerning to my gynonc, and to me, so this is a good time to take a temporary break.

I battle extreme fatigue.  An example: I volunteered for World Vision this past Monday at an event to enroll people in their child refugee support program.  I was there for 5 hours.  Afterwards I slept 14 hours straight through, not hearing 3 separate alarms.  This makes it very difficult to work, but I am looking for part time work to begin in October.  I am hopeful.

The plan is to go on maintenance Avastin in 3 months because that is what is needed to keep ovarian cancer from spinning out of control.  Cancer cells adapt and can become less responsive to treatments over time.  It is very risky to stop Avastin for too long but I need to rest and to recover from all of the many treatments that I have had.

I thoroughly enjoy the treatment team and my new gynonc at Anschutz Cancer Pavillion.  They are caring, thorough, professional and well staffed.  It is an NCI designated research center so I feel that they can handle any special needs a patient may have.  Praise God.

I still rely on my therapy cat, Marilyn. She is my little angel.  She likes to play chase after her morning meal, ha.  That means two or three jolts across the apartment.  I need the exercise.

I still take things a day at a time but can make longer term plans now. I can see myself enjoying next summer, WOW.  I start and end my days with Our Lord's Prayer and Hail Mary. I give thanks at every meal.  I go to Mass because I love God and need God in my life for without Him, nothing works. He keeps me hopeful and steady in this world of unpredictability. If someone gets upset with me or targets me I take a breath and then pray for them, doing all I can to not get entangled in anything negative. It is not completely unavoidable but I do the best I can.

As always I am eternally grateful to family and friends who have stood by me through thick and thin over these past 7 years and thank them from the bottom of my heart.  Each day is a gift from God, a miracle in the making and I pray that each of you gets to experience that "joy" of light each and every day.

God Bless you for all of your love, prayers and support.

Denise


7 comments:

  1. Beautiful post, Denise. I am now 28 years out from my cancer diagnosis. I had Stage 2 colon cancer at age 38, surgery and a year of chemo. It took months (and exploratory surgery) to arrive at my diagnosis because I was out of the profile for colon cancer...young and female. Phew. I was so frightened when I came to in the recovery room and my surgeon said, rather tersely, "Well. You have cancer." And then he walked away. I learned later that everyone in the OR that day gasped when they realized the source of the symptoms I had suffered for months. The surgeon calmly proceeded to remove 18 inches of my colon, taking great care to get "clean" margins, closed me up...and then wept. I know God guided him that day...as He has every day of my life since. God has you in His hands, too! Peace and Blessings...

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    1. Dear Susan, That your surgeon wept shows to me he was in the view and in the hands of God to heal you. What an amazing story and Praise God you are still well. Thank you for your care and support. You are wonderful! Peace and Blessings

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    1. Hi Alice! Thank you very much and peace to you.

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  3. Congratulations! 7 precious years. I am one year past cancer surgery and NED for now. My uterine cancer is high grade and apt to recur, so I am grateful for each day. Wishing you all the best.

    Www.itsthevision.wordpress.com

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  4. You know what? To live understanding cancer probably will come back takes an extra special appreciation for each day and that appreciation comes not easily. Thank you and I pray you live your life joyfully. Hug

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  5. Good afternoon. My name is Theresa Clementi from Patient Power. I am contacting you because I found your blog about ovarian cancer through Help Keep A Sister Alive. Our team at Patient Power is very committed to helping drug developers develop better treatments for patients. While part of that is helping people understand and being aware of clinical trials, another part is connecting patients with the people that develop new therapies so they know what's important, challenges patients face, and importance of hearing a first hand perspective of facing ovarian cancer. Right now we are looking for several ovarian cancer patients and care partners to participate on an advisory board to give their personal feedback. If you are willing or know anyone willing to tell their story to the people who make medicines like these, let us know. You can email my colleague Autumn, at autumn@patientpower.info

    Thank you!

    Best, Theresa

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Thank you for giving to me your precious time. I look forward to what you have to say. Peace and Blessings, Always.