9:24 PM Thursday night. Hubby away for the week, then next week again.

I am in another scary time where I have to be pro active for my own health, as the doctors don't seem to be interested in thinking too much, or maybe I am just getting past what doctors can offer. I had a few months of exhaustion where I had about 4 hours of active time per day, the rest sleeping. Was in the ER for a worthless 10 hours with symptoms of infection and a possible bowel perforation. Blood pressure over 200/115 and later 240/115. The doctor did not seemed alarmed as my head threatened to explode. The labs and CT came out 'fine' so I was discharged. The onc doc on call was the dud on the group I am in. The nurses refer to him as 'useless'.

Our twin parish in Haiti sent their priest for a month long visit. He seems like a man of true peace. He anointed me and prayed over me, and since then my hope has been returning. I had not realized it had slipped. My numbers are rising and the docs say don't worry but I know something is wrong. It doubled in two weeks. Not good. I picked up one of my old books on cancer for a friend who's mom is sick and came across a passage that said stage 4 cancer survivors are (in my translation) crabby, bitchy and pushy regarding their own health..they take command of their own health and are pro active, using doctors as consultants to be checked at every turn. They watch carefully over their attitudes and surround themselves with positive, faith-filled people.

I thought "that sounds like someone I know" and I realized I had been letting go, preparing for death, afraid to ask the Lord for length of life. So now I am asking strongly...You know I will submit to your will, Lord, but you KNOW what I want and why I want it, not for myself. Please grant me long enough to raise my children and help minister to youth. I want to become holy, truly detached from sin.

I called my main doctor and told her I want her to pull up my last CT scan and go over the area in the upper right abdomen with a fine tooth comb. Specifically the common bile duct , the isthmus or sphincter of Oddi (I looked that up), the ascending and transverse bowel along the diaphragm.

I reminded her that the cancer 4 years ago had completely overtaken my gall bladder up through part of the common bile duct, and grossly involved my diaphragm. I feel pain there on every breath. I also reminded her that the radiologists have missed too much on me in their reading of scans, sonograms, etc. The recent PET scan report came back that there was some activity in the spine but not enough to worry about. What kind of crap is that?

She called back with a message that she would rely on the GI guy I am seeing in the next month.

I will have all my scans since last December put on a disc and deliver them to the GI doc by hand, with a written map of where I want him to search and compare.

Five years ago (a year before my diagnosis) the radiologist called the big tumor attached to my uterus a probable fibroid. He said there was no fluid and no right ovary, yet a year later when my surgeon went in there was a big cancerous right ovary, not seen because it was surrounded by fluid. The sonogram tech and radiologist should be able to recognize fluid. My gyn did a D&C on me and wrote in her notes that she felt a very large mass on my right uterus, but NEVER TOLD ME. You can bet I would have insisted on a CA125 count and a CT scan! I was stage 2 then. Recently a CT scan came back "fine" until I called my good surgeon and asked him to look at my transverse colon, where it hurt. Soon the report was amended to "transverse colon adhered to the diaphragm"!

The hardest part of this journey has been dealing with the "system", the spaces where patient care falls between the cracks, or rather the craters into the abyss, and insurance and Medicare Advantage. My only option, since the good medicare programs were cut in our area was a clinical trial. I am bound by a trial that required me to take a certain dosage of three drugs, one of which threw me into anaphylactic shock reaction. Designed by people in labs and statisticians.

I spent all of December trying to get coverage that would pay for the big drug ($25,000 per dose). The insurance I had last year would pay but they quit our area Jan. 1st. I called our Congressman and our Senator to see if they could find out how this happened and how to get around it. When the Senator's office found it was Sebelius, head of medicare, the FEDS in medicare who made the massive cuts (unbeknownst to the citizens or the congress) their tone immediately changed to "aren't you glad you have medicare?" My first chemo bill was for the 20% medicare won't cover : $7000.00. The main lady in the congressman's office, however, was a genius in cutting red tape and got the head medicare office in Pennsylvania to push through an approval so I could start treatment January 4th. At that time the numbers were rising so fast waiting any longer would have let it get too far ahead to stop.

We never were able to find out exactly how insurance coverage is determined, specifically medicare advantage, the lifeline of the sick and uninsurable. That is a mystery I'd like to expose. How can they vote on these programs they know nothing about? And not even reading the legislation before voting. How can ANYONE accept this without question? One would have to be nuts.

I never wanted medicare. I was forced into it as my private insurance premium went up to $2017 per month, plus copays as my diagnosis clicked in. One cancer drug (oral) had a copay of $700 per month, and I needed two. Thank God there was an (illegal) underground railroad for these drugs or I would be dead. The saving contact said he could go to jail and I replied yeah but you won't go to hell like those responsible for the greed.

Obamacare will end up being all about saving money. The thing that infuriated me was seeing them brag about no one will be denied coverage. With no cap on premiums they can accept everyone, just make it cost prohibited like they did for me. The amazingly caring people in cancer care will not be able to advocate for their patients in a government run program, getting exceptions or procedures approved. Stage 4 victims..look out. No doctor will be able to use non FDA approved drugs on you. My second medical oncologist used drugs that were not yet approved for ovarian. My first, more conservative onc asked me why he was using that, it wasn't even approved for ovarian. So I asked doc #2, the aggressive chemo man. he said because the way it works it hits all cancers except sarcoma and you don't have time to wait for them to get around to testing it on ovarian. He said anyone with half a brain can look at stage 4 statistics and see the "standard of care" is not enough. I got 4 years of life from that, my daughters were still in middle school and one beginning high school. Do not fool yourselves that a 50+ overweight woman would ever make it in the line for treatment based on who would get the most benefit, the longest life. Who can put a value on a mother's life in years?

A friend told me this week that her mom was suffering as she approached death, but she prayed, offered it up. Who can put a value on that kind of prayerful intersession on behalf of the world? We cannot escape suffering, only can choose to rely on God for all, for guidance, inspiration, strength , endurance, the grace to think of others. People continually told me "you are so strong, I would never be able to do what you do". I tell them I am weak, but I know where to go forstrength.

My faith increased a lot about 8 years ago, when I was working at our Catholic school in the basement of the church. A beautiful little four year old girl died in her sleep and we wept. Her mom had tremendous faith in the Blessed Virgin. A few women joined her in praying the rosary. I asked if I could join them, really because I wanted to "touch her robe" of faith. Like the woman with a hemorrhage did in the bible. Four or five of us prayed and I witnessed the mom move from despair to peace every week, and every (and I mean EVERY) thing we prayed for came to pass. Husbands came back to church, one friend quit her 100K+ job to stay home and raise her children and have another baby.

For those non Catholics reading this, or unfamiliar Catholics, the rosary is a deep meditation on the life, death and resurrection of Christ. For much of it you recite a mantra of scripture and belief: "Hail Mary full of grace, blessed art thou among women and blessed is the fruit of thy womb, Jesus. (all scriptural) then: Holy Mary mother of God (this is what Christians proclaimed in the streets after a heresy saying Christ was not divine, only human, was rebuked in the Council of Ephesis in the 400's, pray for us sinners, now and at the hour of our death, Amen.

Praying these words remind me of Mary's YES to the angel Gabriel, that I am among those women who too will be blessed if I follow Mary's example. It reminds me that God can break into my life at any point and ask something of me, that I have to be ready, that her loving example is beside me. It seeps into my subconscious as I repeat it. As I repeat it I focus on a picture of the mystery for that decade of ten Hail Mary's. The mysteries begin at the Annunciation, when Gabriel appeared, continue through the joyful mysteries of Mary's life caring for Jesus, then to the Luminous mysteries of Our Lord's life, then the sorrowful of his death, then the Glorious ones of his resurrection and the way He left for us to live with his Holy Spirit, and His mother's constant aid.

Often I start praying the rosary distracted and feeling far from God. By half way through I am quieted, by the end I am at peace. Sometimes I really pay attention to my feelings, my response to God and stop at a mystery and just contemplate it. I started my family praying the rosary together after my eldest daughter returned from a semester in Europe, with weeks in Lourdes and Medjugorie. Believe me it was awkward. My husband "Mister private prayer only", my other two daughters, who thought it weird and bothersome, never a good time to do it interrupting homework, tv shows, etc. balked at my request. I held on and every night there was a palpable peace. There started to be laughter more, the girls and me and hubby finding our way into the kitchen to clean up, or watch one of us bake something yummy. Lines of communication seemed to open up so gently we could not explain it. But stop for a few days or a week or so and the angst came right back, in full force.

I feel good about teaching my family to 'pray even though you don't feel like it'. I feel good that they have memorized the prayers including the Hail Holy Queen, the rosary prayer: Let us pray, Oh god, whose only begotten Son,

By His life, death and resurrection,
Has purchased for us the rewards of eternal life.
Grant, we beseech Thee, meditating upon these mysteries
That we may imitate what they contain and obtain what they promise,
Through the same Christ, our Lord. Amen

I can tell that my girls are proud of knowing these prayers. There is a beautiful rhythm to them, a constancy that one can rest on while all else spins around us, when thy cannot imagine how they can get all their work done for school, or wade through those sticky relationship woes and frustrations. Not to mention their fear of losing their mom.

I love the rosary because it can be anything you need at any point. You can just murmur "I love you Lord" or "Help me Lord", or "thank you Lord" on the beads and just take a break from life and BE with Jesus, and remember there are realities bigger than what we are experiencing and all is okay.

One last word about doctors. I have learned how to spot a good one, and God bless them. They listen, take you seriously. I've also learned that no one can be everything. The researches, loving in their own way, are less involved with side effects. My aggressive chemo doc said I have to go to someone else for my side effects..he was working on killing my cancer, and he was a deep thinker, and a man of God with deep faith. My good surgeon is also a man of deep faith, and the man who taught me about hope. He is generous with his time with me always. My first chemo onc doc was a man of great compassion, who held my hand through the first six months, without whom I could not have endured. But he was not to go beyond the standard of care. All the research I had done said to survive stage 4 ovarian you must go beyond the standard of care. My surgeon said, "there is no way you are stopping. Your onc may be pissed at me for sending you to (the aggressive doc) but I don't give a crap! I am your advocate, not his" I love that man.