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