Missing an Ovarian Cancer Diagnosis Should Be Criminal

Missing an Ovarian Cancer Diagnosis Should Be Criminal

Trisha Torrey is a patient empowerment advocate. In this article, she quotes me! I am so thrilled to know that there are other women out there who really see the crime in allowing undiagnosed ovarian cancer to persist. Thank you Trisha for your powerful presence. Thank you for listening to me. Denise Archuleta

sleeping in

I slept until 1pm today.  Not sure why, I guess I needed the rest.  I went to bed at 11pm, and fell asleep quite readily after reading some of the Bible.  I have gotten behind on my reading, bogged down a bit with worries.  I'm not supposed to worry as my life is truly in God's hands.

I received a letter from Dr. G saying she is comfortable with returning to work in October, pending progress with arthritis.  That made me feel a little more at ease, as I'm really not ready, but getting there.

Every day I work on building up my strength and endurance, so that I can actually do meaningful work.  I still don't know though what it will be.  I didn't call the "Ticket to Work" organization yet, I need to do that next week.  I am procrastinating.  I feel totally stuck.  I think it's because I really just want to be involved in advocacy or have my own little business.   Lord help me figure this out.

Lord please also help my mom.  She has nausea all the time.  Our summers here in Seattle are short.  She is missing the moment.  I love her so.  I love my family. 

Tomorrow I get to enjoy the Blue Angels show with Mandy, Patrick, Laria and Addie.  Hopefully mom will be able to go.  It will be so so nice to laugh and smile, in spite of the rain.

Be Love,
Denise

My second Birthday

On this date at this time last year I was lying in a hospital room after major surgery to remove cancer.  I had a total abdominal hysterectomy, appendectomy, removal of my omentum and lymphnodes, as well as some smaller tumors along the peritoneal cavity.  I was "optimally debulked" according to those in the gyn-oc community.  According to my mother and aunt, my surgeon was beaming with joy at the results.  He said it couldn't have been any better.  The next phase, chemotherapy in 4-6 weeks.

I had to move to Seattle for chemo, which I completed the end of February.  My next CT scan is in about 3 weeks, along with another CA125 blood test.  Now that there is no evidence of the cancer, I am on lifelong survielance, because the recurrance rate is about 70% for my type of cancer, Stage IIIC.

Today I have the luxury of being with my family, to be exact I am sitting in my sister and husband's beautiful home.  I also got to enjoy a nice movie with mom earlier today.  As far as "second" birthdays go, its been pretty good.

A year ago I couldn't even roll side to side, I had staples from my breastbone to all the way down "there".   For several weeks I needed help in and out of bed, my aunt and sister had to stay with me because I couldn't take care of myself.  I was in so much pain, so much pain.  The narcotics made me constipated and it just gets worse from there.  Recovering from the surgery was a real challenge, but I did it.

Once chemo started, I had a whole new set of problems.  Unexpected visits to the emergency room, nausea beyond belief, severe abdominal pain still.................total loss of concentration and unbelievable fatigue.  It was hard just to watch TV or check my email sometimes.  Once chemo ended, the residual effects lingered on and on.

To this day I get nauseous every day, but just a little.  ( I have to take methotrexate for rheumatoid arthritis, and nausea can be a side effect).

Now I can walk around the lake, which is a big WOW for me.  It's not a power walk or anything, but it's a walk.  I need to get stronger.  Strange though, because I have no omentum, everything jiggles, and it "hurts" if I bounce too much, but I try.  That will never go away, so I have to deal with it.

I can concentrate now, and don't have that severe abdominal pain any more.  What I do have now though is an extreme fear of getting super nauseous and winding up in the ER.  I had severe vomiting episodes after chemo ended, and the cause was never determined.  I am very careful to take anti-emetics before I exercise.

I am still so lost though, and I need to resume some sort of work someday.  I cannot imagine a full time job but I can imagine a part time job. 

I apologize that this post has been more about my body than anything, but unfortunately that is where my focus has been.  I went to church last Saturday for the first time since May (when I got severely nauseous).  I met with the priest and it felt so good to confess my anger.  I need to rebuild my spiritual self and find my place in this world.  My place to provide good will, and I'm working on that.

My family and friends are the most important people in my life.  They got me through this episode and dark period in time.  They are supportive, but I know they don't want me lying around the house on disability doing "nothing" with my life.  Neither do I.

Having a chronic disability (arthritis) and cancer history make job hunting a real challenge.  To be honest, I love life and treat each day as a gift but I'd be lying if I said that the 70% recurrence rate didn't worry me.  It does, it clouds me. 

I want to get retrained with the "ticket to work" program, but for what.  So I live my life check up to check up.  It would be so MUCH easier if I already had a job to return to.  The cancer center is offering a "cancer and careers" workshop in August, which I will attend.  Truthfully, I wish I had my own little business.  Just a little something I did at my own pace that made me just enough to pay bills. 

As my physical self gets stronger and more able, my mental state improves because my confidence improves.  Still need to get to Gilda's Club. 

I am a thousand percent better today than I was this time last year.  I thank God for surrounding me with a very very very loving family that reached out to support me and help me when I was unable to help myself.  I thank Him for sending me good friends who really cared and took care of me during dark days.  My mother, aunt and uncle, sister and her husband, and brother really really really bent over over backwards to get me the resources I needed.  I would not have survived without them.  I also thank God for my surgeon and oncologist, who saved my life, literally.  I am blessed.

So tomorrow is a new day, another chance to make a difference, be a friend, and be Love.

Denise 

A prayer for those with cancer

Oh Saint Peregrine, you have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (names of those for whom you are praying, including yourself).  Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy.  Amen.

Sleeping

I still sleep 11 to 12 hours per day, no matter what time I go to bed.  No matter

what I do the day before.  I wonder if my medications cause me to be so

sleepy or if I'm still depressed.

This is a concern because eventually I need to really live a life that has some sense of normalcy.  Maybe "normal" isn't what I need to strive for.  In the world of my imagination I see myself running a non-profit organization that helps women blindsided by ovarian cancer.  In another world I do good deeds for the homeless. 

In another world, I make pottery and sell it on etsy, donating a portion to

ovarian cancer research.

I wonder if I will ever live alone again or have my own apartment.  I guess that is not really important. I really enjoy being with mom, even on our "bad" days. 

 I sometimes think she tires of me. 

Whatever I do in the future, I can't be sleeping 12 hours per day. 

I am still very anxious about being in large crowds because of my neutropenia.  Yesterday my sister's girls participated in a karate demonstration at a Seattle event called "Bite of Seattle".  I really wanted to go, but my WBC is low and I should be getting a shot for that this coming week.  Plus, I have this huge fear of getting severe nausea and vomiting still. 

I hope I'm not turning into a basket case.

I did speak with a kind woman from Cancer Lifeline (local support organization) last week.  She invited me into the center to take a tour.  I'm moving at a snail's pace on reaching out for support, but it feels right to me.  I must be driving my sister nuts, she is really pro-active and doesn't waste time. 

 I love her so much.

Anyway, I need to find a way to get up each day by 8am.  That is my short term goal for this week.  Let's see if by the end of the week I can awaken at a normal hour.  

Be Love,

Denise 

forgiveness

I have been relishing in the warm weather, joyfully awaiting each day knowing that I can actually walk outside and be comfortable.  Seattle's summer is short.  We have a small window of opportunity to do what we want in order to feel "satisfied" before the tiring rains begin again.  There is little time to worry or wonder about regrets or postpone plans.

That is sort of what I feel in terms of my well being.  I don't want to live my days with regrets, unanswered calls, forgotten business, unresolved matters of the heart and will, issues with the past etc.  Yet each day I am faced with an opportunity to do something to resolve some thing.

I opened my mouth today and accidently revealed something that was not supposed to be said to another.  The mistake was truly a mistake, I was not aware that this condition existed and now I feel bad.  The problem is that this one incident is part of a larger festering unresolved conflict that involves a group of people I love dearly, and we are all involved.  It's a matter of long standing problems that have caused immeasurable pain for others, and there seems to be no resolution.  It is simply a painful situation, and my heart breaks because I want to wave a magic wand to make it go away.  I want to turn back the clock and do things differently.  I want to fix it. I can't.  It hurts.

So I apologized for making my mistake and I apologize again. 

So how and why do we continue to live our days knowing that we have unresolved conflicts, pain and anger, nestled in each fiber of our being?  Why can't we just fix our lives?  Why can't we instantly forgive and forget, let people be who they are and have no expectations.  I don't know but if we lived our lives by only loving one another we would all be happier. 

I will continue to make right my wrongs as best I can until I die.  I have had a brush with death, just enough to appreciate forgiveness and love.  I have to work hard each day to be what I preach, so to speak.I am far from the best example. I will pray for all I love to live a life of love.

Be Love

My hair

A glimpse of sun

A beautiful day was today

Nothing to wash my smiles away

No thoughts about cancer or it's return

Just beams of sunrays around every turn

God hear my prayers that my loved ones are healthy

Fine spirit and body, humbled not wealthy

Let them feel love, radiance and glory

Let them have peace, content and no worry

Be Love

Denise

Birthdays

Yesterday was my 46th birthday.  It was a beautiful day.  Mom and I went over to Patrick and Mandy's house in the afternoon.  We played with Laria and Addie.  We created our "summer fun" calendar for the kids so that they won't get bored.  I had a chance to talk with Aunt Debbie.  I responded to many wonderful well wishes on facebook.  We had a really nice greek dinner and a taste of sorbet and carrot cake ice cream.  I got to watch a little bit of a movie with the girls.  Overall, it was truly a special day.

The only thing I wanted was to treasure time with people I love.  I missed seeing my brother.

I missed my friends from California.

I wasn't sure I would be here for this birthday.  This time last year I was in horrific pain and eveything I knew to be true was turned upside down.  Now everything is new, fresh, scary, uncertain, but hopeful and filled with opportunity.  I get waves of depression and get stuck, but know everything will be OK with God's help.  I'm in the right place.  I love you to all my family and friends. 

Thank you for a beautiful day.

Be Love

frozen

I feel stuck today

I'm standing at the top of a tall narrow pillar, blindfolded

Frozen

Fearful of any movement in any direction

Why, I do not know

Be Love 

wants

I could be anywhere doing anything
I want to be here

I don't want to be in a crowd of people I don't know
I want to recognize the smiling faces around me

I don't want to be alone yet I want a private space
I don't think I can rely wholy on myself as of yet
But I want to be free and independent

I wish no more pain or sickness to be inflicted upon my body
I just want grace and peace

Will I be a blessed recipient of peace, grace and strength?
Can it be so?

Update from oncology appointment

I saw Dr. Gray today.  It was so nice to see her, she was very encouraging.  My CA125 is 8, which is really good.  Her exam revealed no concerns.  I told her I was still foggy and got tired easy, but was doing better.  We spoke again about possible recurrence and reviewed the symptoms.  Again, with ovarian cancer, it's all about subtle changes. 

She was so kind in trying to speak with me realistically about recurrence, saying that for a group of women, there is no recurrence.  There is no way to predict for me if I will fall in or out of that group.  So I need to continue to take life day by day, and use each 3 month check-up as a mini-milestone of progress.

She encouraged me to try to be as active as possible and if it felt right, join a support group like Gilda's Club.  She is right.  I just haven't had the energy to join a group yet, but it's getting time.  Especially since this first year or so after chemo is so uncertain.

When I came home I was just so extremely exhausted.  I think emotionally it drains me to confront my situation.  I don't dwell on it, but it lingers every day, like stagnant air, suffocating at times.

On other days I feel so happy and excited, I have a second chance.  So I exist rolling up and down these hilly trails each day striving to make a difference.

I pray for God to continue to lead me in the right direction, making my eyes and ears sensitive to His calls so that I may serve. 

I felt better after my nap today.  Sleep always helps me. 

On to tomorrow and a fresh start once again.  I have a wonderful oncologist and am so grateful for her.

Be Love

disconnected still

I feel most alive while I'm sleeping

In my dreams I can live freely

No pain, no worry, no weeping

So disconnected still

Removed from the everyday treadmill

Yet immersed in a constant threat

How long will God grant me breath and will

Be Love,

Denise

Johanna's Law

Johanna's Law was introduced to the Senate on June 15th 2010 by Senators Spector, Stabenow and Menendez.  This law would allow the CDC and Secretary of Health and Human Services to increase resources allocated to raise awareness and education of gynecological cancers, such as Ovarian Cancer.

This is great news!  I've never seen a pamplet or handout about Ovarian Cancer in any doctor's office.  You never see public service announcements or commercials about the horrid disease.  Health education classes certainly don't talk about it.  I never had a gynecologist talk to me about the symptoms of Ovarian Cancer (except to say I was too young to have it).

Cancer is so scary, especially a gynecological cancer.  We as females are so dependent on our health care providers to be the eyes and ears of diagnosis.  Especially since anyone would want to minimize symptoms as a natural defense, we need our doctors to be more aggressive at looking for the early signs of ovarian cancer.  We as patients cannot do it alone.

Be love,
Denise

Death

Yesterday, while at SCCA, I had the pleasure to speak with a spiritual advisor.  We spoke about coping with cancer, living and of course, death.  We talked about chemo brain.  It was a good conversation.

Last night a young 18 year old male was killed by a drunk driver on I-5, yet I am here.  AGAIN, we all have a purpose.  I pray for his family.  Is it random by chance?

Does God see the world through our eyes or His?  I just wonder sometimes. 

I am afraid to die, but am also doing everything I can to find peace with the idea.  I am reading the Bible, hoping to finish it soon.  God comforts me and sometimes I want to be wrapped in his arms.  I want for everyone to feel that same sense of comfort. Is it like an eternal state of sleep?  In the mean time, while here on earth, I want to be happy and be happiness for others.  I don't want to worry about small problems.  I want to be love.

I told the advisor, I'll call her "M", that being on chemo feels like you're living in a Johnny Depp movie all the time.  Everything is warped.  I was so afraid of everything, even a knock at the door.  I couldn't follow conversations, felt like an invisible magnetic force was keeping me away from everything and everyone.  Sort of like floating, but not in a good way.  Be patient if you are helping someone on chemo, they aren't all the way there, not fully present.  Yet they ache with every cell in their body and spirit to be present, to participate, to live!

To my family, I promise not to leave a mess when I go and not to burden you with unfinished business.  Between now and then, I promise to be as involved, motivated and loving as I can.  I want to enjoy my life with you, I want to live to the fullest. 

Be Love, Denise

OCRF

The Ovarian Cancer Research Fund is a great place to look for the latest on OC research.  Please take a look and support this cause.