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

Reverend Doctor William Barber II addresses the DNC—Part I

My Love For Soap

Taking a break from talking about cancer to share a a "little happy".  My 7 year cancerversary is next week and I have a very interesting story to share with you then.  

For now please take a moment to hear this little story about another way I can share my love for soap with you.

My personal webpage is https://DeniseArchuleta.po.sh/

You know how much I love soap so for me this is just fun.  I hope you find this fun too.

Peace and Blessings!

Fragrant Cold Pack Hack To Relieve Hot Flashes

I have been having hot flashes since 2008, ridiculous I know. I started having them in a severe way approximately 9 months or so before my diagnostic surgery. My bosses at work were a little perplexed at my sudden need to stand outside in the cold multiple times per day, HA.  I was told to "monitor" the situation because it could be early menopause.  Well, unfortunately it was not just early menopause.

So fast forward to the current day, summer heat and me trying to minimize my electric bill and you have one uncomfortable mama. So in the past 7 or 8 years I have tried many remedies to reduce or eliminate these disruptive hot flashes.  In addition to this cold pack I keep some cute oriental hand fans on hand to make the air around me breezy if I am not using a fan.

Hormone patches are a no-no for me because of my BRCA1 mutation. It is imperative to avoid them in order to reduce the risk of getting breast cancer. 

Hot flashes love me, they never want to take a break.  They arrive every hour or two, and come on with a frenzy if I am talking about anything uncomfortable, rushing to get out the door, or being active for any reason.  Exercising comes with all kinds of fun extra sweating.  I have night sweats EVERY night.  If preceeded by an anxious conversation or thought, the hot flashes are combined with nausea and panting.  Sort of a "fear" feeling that paralyzes me temporarily. My face turns tomato red and I sweat terribly. Yuck a wucka woo!

Otherwise I look normal. HA

So here are a few photos showing how I make this little neck wrap that is kept in the freezer at home. 

 I apply this directly to the back of my neck but if your skin is sensitive, you should cover this wrap with cheese cloth or a very thin dish towel/cloth to protect your skin from the direct cold.  

This fragrant cold pack feels GREAT on the back of my neck and speeds up the hot flash recovery time. I only need to have it on for a few minutes at a time. It works quickly.

If you are anticipating a hot flash coming on, place this on the back of your neck right away to lessen the severity of this unwanted experience (that is if you have time to run to the freezer) ;-)

This cold pack smells AMAZING!

Place about 1 cup of water in a stainless steel bowl.  Add just a few drops of Rosemary Essential Oil and Peppermint Essential Oil if you like.  Gently mix the oils and water together.

Place the clean large washcloth in the bowl to soak up the water and essential oil mixture. 

Wring out the washcloth and place it on a clean surface.  Straighten and then roll the cloth into a tube shape starting at one of the corners.  

Form the cloth roll into the shape of a horse-shoe and freeze.  Store in a clean ziplock bag once frozen for re-use. 

This fragrant compress will gently rest on the back of your neck when you are in urgent need of hot flash relief.  

I have placed a few links that provide some education about the benefits of Rosemary and Peppermint  Essential Oils.  You can use the essential or fragrance oil of your choice if you have any on hand, or no oil at all. It is up to you.  I recommend researching the oil beforehand just as a precaution.

Peppermint Essential Oil

Rosemary Essential Oil

I hope you find this cold pack helpful to provide some relief from those uncomfortable and sometimes intrusive hot flashes.  

Peace and Blessings,

Denise

Energy Conservation: Its A Family Thing (or should be)

When I worked as an occupational therapist, several decades ago, one of the founding principals of maintaining independence with chronic illness was implementation of energy conservation techniques into one's daily life.  That would mean showing a patient how to complete an activity using less energy.  Back in the early 1990s it seemed a lot easier to talk about and incorporate these kinds of things into one's lifestyle because at that time our culture was not so focused on technological multi-tasking.  I miss the old days of giving 100% of my attention and energy to one thing, finishing that and moving to the next thing.

Multi-tasking is very exhausting and unfortunately for those of us in chronic states of fatigue, such as from cancer and its treatments, trying to keep up can be overwhelming.  When I am out in public, say at the store, I can sense the frustration from the person behind me in the check out line if I am not swiping my card fast enough or if I am moving my cart too slow.  Everyone else is running circles around me.  I want them to slow down and enjoy the day.  I want them to be more at ease and they probably want to slow down too.....but they can't because our culture demands that we do fifteen thousand things at once to be more productive.

So because cancer is a family thing, sometimes treatment can be a family thing as well.  In the case of conserving energy I highly recommend that anyone who may be directly involved with supporting your care learn about energy conservation as well.  It could benefit them by helping them conserve their own energy and also have more patience with changes.

I found a helpful this link about managing energy related to cancer fatigue:

Cancer Related Fatigue

Here is a scholarly article that may be of interest about energy conservation research:

http://soundideas.pugetsound.edu/cgi/viewcontent.cgi?article=1092&context=ms_occ_therapy

This all came to mind as a result of time spent on job searching.  I want to try working part time again, maybe starting at 10 hours per week. It would greatly help me with my living expenses.

My last part time job was very stressful and every second of my time was incorporated into a productivity metric. Companies nowadays are not enthused about letting employees pace themselves...ha.   I just cannot work in that kind of setting.

I am in treatment and will forever be in treatment.  Sustaining basic living will at some point be impossible unless I go into remission and regain a normal level of energy.  I trust in God that He has planned for me good things and as long as I keep Him in front I know I will be OK.

Today is a good day.

God Bless you