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.

July 25th 2010

Been a while since I have written. I am feeling better, which never means I feel like a healthy person. It means I am not terrified I am going to die of a stroke tonight or some other side effect ignored and undiagnosed.

I feel better also because my attitude is better. I found a way to find Jesus in my day. I am miserable when He seems unreachable. I heard on a retreat many years ago that the primary way God speaks to us is in our vocation. Mine being marriage (or mahwwage as in the Princess Bride, favorite movie) I decided to look upon my husband as if Jesus was trying to communicate to me through him. The first time I tried this I, being the spiritual guru of the family :) (not), thought it would be odd for God to speak through my hubby. Let me assure you...it was as if he unconsciously realized I was listening to him and he spoke to me. Sometimes he'd ask me, puzzled, why I was gossiping. Or he would demonstrate compassion for someone I was complaining about. Lately I feel love from coming from him, safety, tenderness. I mean I know he loves me, but when I consciously look for God and listen to him it is different. I feel protected in love. My conscious attitude of listening and seeing his divine self seems to open me to hearing God's love. I find myself thanking God often during the day for him and my life.

I watched the movie Bernadette (of Lourdes fame) last night with hubby. The kids were not interested. We were mesmerized by this simple 1940's movie in black and white. It was interesting to see the same politics, selfish motives within and without the church against Gods work. Same as today. Poor Bernadette was troubled by no one ever believing her..even on her death bed they asked her to confirm yet again did she see what she said she saw. She suffered terrible pain but with her eyes on heaven her awareness was of something bigger than her own pain.

My daughter went to Lourdes last year, twice. And Medjugorie. She brought my typed up list of petitions. Opportunist that I am, I sent her prepared. She met with one of the visionaries at Medjugorie, whose charism was healing. When asked for petitions the crowd scrambled to write down on scraps of paper and my baby whipped out my typed up list! One of my prayers asked for a holy priest to come to my parish. It was during that time that a new priest was assigned to us. I am happy. But it puzzled me that I know he would not be appreciated as he is if we had not suffered spiritual starvation beforehand. Are we so thickheaded and stupid that suffering is the only way we will be open to Our Lord, and the gifts of others?

So many people have prayed for me. It is humbling. What is it I can give? I owe a debt of love to many, that I will never be able to fully repay. It encourages me to pray, as there were certain times when I suddenly felt lifted up and knew someone had prayed for me. There had been nothing I had done to effect any change. So I know when I pray for others, even in those 'is anyone listening out there' times, grace moves. I offer up my struggle, and the unwanted changes in my life for all who struggle. Especially those who have no one to pray for them. It makes my burden lighter. Then, of course, the Catholic guilt arises and I wonder if my offering is of any use since it makes me feel better. :)

More people care about you than you can know.

JULY 7TH, 2010

8:01PM

Bloated. Spent the entire morning to see another total A-hole doctor. Without examining me he said there is nothing wrong. He did not even bother to say You LOOK GOOD! He was covering for me regular doc. fever, sweats, killer headaches, blood pressure usually 120/80 now 175/100 (it's been up to 150/90 from one drug but never this high), excruciating bone pain, constant infections, sleeping 6+ hours during the day (I am not depressed), loss of appetite, tightness when I breathe, bowel problems...all new and increasing symptoms. I do think the bone pain is left over from the taxol.

But I look great.

I am really pretty okay with enduring suffering, but the problem is I need to find out if this is something to be dealt with or not. After having had doctors tell me for two years I was just overweight and ending up with stage 4 ovarian I never do let a feeling that something is wrong be ignored. And that really pisses some people off.

I told this doctor about the two year thing and said " I know when something is wrong and I will just have to find a doctor who is able to pursue this." Then he offered to do blood work and my cancer count is up. Just 4 points, but it is the first time it has gone in that direction since I started treatment.

Cancer nurses are pretty on the ball. I stopped by the chemo room to see Jana, the nurse who told me yesterday's doctor wanted to see my right away. She asked "Did he even listen with the stethoscope?" which told me this is not the first complaint she has heard. He had not.

I had hoped to make this blog a place of hope rather than a gripe session. My message to you current and potential cancer sufferers: take matters into your own hands...don't let anyone make you feel stupid with your medical complaints...and hopefully you will not find yourself in the stage 4 class. If you do find yourself there here is my advice from my wonderful surgeon: It does not matter if you have a 95% or a 5% chance of recovery. If you are in the losing percentage in either camp you are dead. So...you have ONE job to do...and that is get into the winning camp by every means possible.

My prayer tonight is help me find the truth. Maybe this IS it (the near end) and the good Lord prefers in his mercy for me not to know yet. I remember that Saturday morning years ago, in bed, winter, with the dog, praying Oh Lord let me have more time with my husband and children!!! and immediately the words popped into my head Get UP they are downstairs!!! I knew it was the Lord for I certainly had NOT been thinking THAT! My pitiable thought was I was talking about summers to come!!! I am quite comfortable her in bed with the dog. I did get up. I can tend to isolate.

Cancer has made me think about death more, obviously. How different it is from being a regular healthy person who may die in a car crash with no chance to prepare. It certainly has made me more grateful. I still love that I can breathe. And lay my eyes upon my loved ones. With skin on, I mean. I know I will love them eternally.

My mom had systemic lupus and agonized over spending her late years being a burden to her children and incapacitated, or put away, perhaps. We called it the rash watch///'does it look worse? hmmmm...does it look better?...' Then she had a fender bender in a freak April snowstorm and died three weeks later from a bump on the head. What a wasted bunch of hours spent worrying.

I have a wonderful family,. I married the 'goodest' man I have ever met. he is just a deeply good man. And funny too, to me. (that is funny haha not funny weird) My daughters are beautiful and wonderful in such different ways. We've got a neat dog, too, who hops up on the bed when you don;t feel well or there is thunder. I have to admit, though, I think about the days when the kitchen floor will not be filthy after he comes in from the yard. I bet there are a few things people won't miss about me, too. And that is okay. I've been known to leave a mess now and then.

Get up: they are downstairs, or outside, or a phone call away, or about to meet you in the grocery store, or needing a get well card from you....

I am remembering my dearest friend, Bliss (not her real name but close). We met the first day in chemo, we recognized each other from Mass. Both moms of teens. Instant 'in the same club' feeling. One day on the first round of cancer, I hit a real low. I was lying on my couch praying the rosary weeping 'I cannot do this mama, I am done, I cannot bear another moment.' And the doorbell rang. The door opened (by someone who knew how hard it is to get up and answer the door) and in walked Bliss, all cheery. 'I brought you some tortellini soup!' I wept and she put the soup down and sat near me. 'I just got a clean bill of health...ALL eight tumors in my liver are gone!'

She prayed with me. She said Go ahead and ask for a healing, ASK for it and don't feel bad. Set a date. She told me how St Bernadette came to her in a dream and said Don't worry everything will be alright. We became so close over the next two years. She had stage 4 colon cancer and two boys. We used to go out for lunch and confess our thoughts. I said I have always wondered HOW one actually died of this. And she laughed saying she always wondered that too! Then we imagined what happened and laughed. I told her I asked my sister to go pick out a coffin for me (she refused) and my dying wish is to not have to need an oversized one to fit. It was so fun to be able to laugh and be irreverent.

I never really minded being bald. Hair falling out was a tear jerker, though. I remember the first time I had a handful of wet hair in the shower. I looked down at the drain and wept. Then I went and got it cut really short. F-you cancer...I'll chop it off before you can take it. I make my hair short, not you. Then I shaved it. My way of maintaining control. The next time my hair fell out I pulled it out and offered it up praying I know you have every one counted...this is for those losing their hair for the first time..may this NOT be for nothin' Lord.

I friend of mine at work confessed that she had a wig...that it was a 'hot floosey wig' a Raquel Welch long blonde wig. I borrowed it and wore it to church one Sunday and all the men glanced at me. My friend's husband laughed and asked if I would lend it to his wife! My daughters were furious and sat in a far away pew. I just needed to be ballsy about this cancer deal. You have to do whatever you can to keep from sitting and crying. I could not stand that people who never had the time of day for me suddenly came up to me with pathetic contrived sad faces and said 'I am soooooooooooo sorry." What do you say to that? What? Me toooooooooooo? I'm sooooooooo glad you feel sooooo sorry for me? Then they would try to keep talking about it, telling me about every person they ever knew who suffered a terrible death from it.

When I first got it our priest invited me to the parish council Christmas party, which had, of course, a lot of booze. One woman who was THE power player and could not stand me came around three times to tell me she knew someone who died and her children were fine. I wasn't sure if she needed a drink or had had too much, but I wanted to give her a 'bronx hair wash'. That's when you shove their head in the toilet and flush. The really sad part of this was she probably thought on the surface that she was comforting me. There was a time, years ago, when her face shone with light and joy and kindness. We cannot ever rest on our laurels. How does it start, I wonder, that turn from grace? I think it is a little hurt somewere left untended, or staying near someone who refuses grace.

People ask me what is good to say (as if they might have said some such stupid thing, and I say ask 'who is coordinating meals for you: I'll call them and bring you a dinner. I'll be praying specifically for you everyday at noon...' One woman leaned over to me after communion and said 'I just offered this Eucharist up for you, I offer every Eucharist up for you'. And I cried. Who am I? What about all the people who don't have faith who have no one to pray for them? Why me? Why am I so cared for?

This is my moat story. I have felt from the beginning that I have been, am being, dipped in a yucky moat of suffering. A moat is that river surrounding a castle that is filled with crap and other deadly stuff that keeps bad people away. I am dipped in this moat that everyone with cancer is in, but for some reason I am being held. There is some reason I am being allowed to understand this suffering. I just wonder why I am being held, when I am no saint.

So, back to Bliss. I called my sister in law, Rose, and asked if she wold pray with me for a cure and she said sure. And I told her Bliss said set a date. So Rose said how about June 1st and I immediately said No, May 1st. He can do it when ever He wants and if He's going to do it I want it for Mothers Day. Later on I was on my surgeon's examining table and he asked how my husband is and I said Oh fine, except that his wife has cancer. He stopped cold and declared NO his wife HAD cancer. Yours is gone, your numbers are normal. At home, I told my daughter and went out to the grocery. Then later Rose called and asked about me and my youngest said Mom's okay and the doctor said she doesn't have cancer anymore. Rose called back later and said, crying, do you know what day it is? It is May 1st! I later realized that May 1st is St Joseph's day. That is another story, how St Joseph is responsible for my survival. I'll get to that some other day. Time to get up and get out in the sun. Thinking of you, Bliss, and praying for your boys.

3:13 am. felt pretty good today, no bone pain, no restless legs. I got tired and rested, got some stuff done. Felt at peace. Went to bed and out come the legs rattling and the bone pain, now I'm up waiting for it to work....the drugs.

I prayed for God to heal me tonight. I have not done that yet. My prayer has been for grace to carry this cross, to let me offer it up and atone, for all the good intentions abandoned, the utter absence of thought of another until after it is too late, the hypocrisy...I'd really like some relief though, for my family, too. It does make me more aware of others who are suffering everywhere. It really irks me when folks say "You look great!". I know they mean well, but no one sees my almost continual pain. So maybe I don't see the pain inside others, the psychic pain, the loneliness.

I started this blog as a place to put down random thoughts, log some of the profound things that have happened since I got the diagnosis. I used to joke with my gynecologist "I can handle anything, as long as its not cancer...then it was as long as its not ovarian, then as long as its early, then as long as I make it to Christmas. Now its until my youngest gets to college....

I have realized how connected I have been to people in my church that I don't know but to see them weekly. Now I really smile at them, I love them to death, just for sharing life with me, coming to mass every week. My neighbors, too. And my family members (a sister who had been estranged for 20 years) talk often, and always say I love you. Friends too. I feel so blessed to have people in my life, the grocery guys, the lady in the convenience store, every where I go there seems to be people, real live images of God... This is what happens when one's bar is lowered. It's a good day when I can breathe. I remember not being able to breathe.

Today was a joy day...as if my heart was overflowing, dripping and leaving spills on the floor. I got a call from my youngest..she is at a youth conference, and she was so excited because she went to confession, and really felt adoration, with 2000 kids her age. This is a totally normal kids kid. She has been pretty mad at God lately, since my stage 4 cancer returned. So I take it she has felt some healing of her fear and sorrow. Thank you Lord.

11:45 PM Friday night. My sister just left today after a weeks visit. It was comforting Just to have here near. I am disappointed that I had no energy to take on a project. Last visits were full of quilt making. We did make it to a great quilt show and were inspired.

I rested on the couch while my daughters cleaned up after dinner and hubby sat near me surfing the net. My legs arms and hip bones ached terribly and I was sad that they did not know. What do I do...yell out hey by the way even though I look really good and just lazy, I am in terrible pain.

It is just so weird that no one knows. I feel that focusing on it more makes it worse, yet not sharing it causes isolation.

I am dreaming about a hot tub, soaking and stretching.

I miss my routine spiritual life, my rosary..it all fell out of whack on the visit. I get all my strength and comfort from my time in front of Jesus. Sure wish we were in a 24 hr adoration parish.

Let's see. It is June 17th. 10:42PM. My legs hurt, and my arms and hips. The doc says a small percentage of taxol users suffer from bone pain after chemo stops and I got it. Sometimes it lasts a year. Ibupropin actually worked partially this afternoon. I just bear it during the day, but sleep is impossible. Last night I was about to take 3 5mg oxycodones and double checked and sure enough I had laid out 3 15mgs. I wonder what THAT! would have done. I always lay them out and double check.

I started out offering my trial up to the Lord, as a sacrifice applied to others, hoping and trusting for some good use of my suffering..redemptive. Often it would relieve the suffering and make it easier to bear. Then, as only a Catholic would understand , I wondered if it was then less of a sacrifice as it took my mind off my own pain. In a holy moment I told the Lord I wold suffer whatever He wanted me to have, that I would suffer for His kingdom if He thought it could be useful. There are so many ways I have tried to amend only to fail, so I welcomed this chance to atone and help others, for all the times I failed to do so. But now it seems really hard, and I am disappointed at my sorrowful attitude.

I hate that so many people say "wow you REALY look great" You don;'t say that to most people, as if they usually look like crap, or they should look like crap. It does bother me that they have absolutely NO idea what my day is like. I have slipped into self pity. I cannot quite wrap my head around the idea that this is it....it does not get better, only worse, I can hope to limp along staying alive as long as I can. When it comes back it will be harder yet again.

The truth is that in many ways it is easier this time. Nausea is not a problem, I took l-glutamine for the shooting bone pain that was an indescribably awful nerve pain that I had to drug up around the clock for a week to battle while I juggled the nausea drugs. None of that this time. The side effects are much worse, and life threatening, so I have to be constantly vigilant. I am alive from very advanced stage 4 ovarian with a second recurrence, in part because I have some medical background and I am willing to be a total pain in the ass. I do not stop when a doc shrugs the shoulders and says I don't know what that is, and (I really don't believe you are in pain because YOU LOOK SO GOOD!). I keep pushing until I find out. And that is exhausting. My anger that THEY should be doing this makes it all the harder. I could be grateful I have teh ability to hunt down and figure out what assorted aches and pains are.

I have an awesome surgeon, a holy humble man. He says 'I always believe everything you tell me. Thos other docs don;t know how good you look when You are sick. That man taught me what hope it, and how totally powerful it can be.

Last time my prayer was panic: " I better not f--ing die" I am shamefaced remembering that, but I knew it was futile to water it down for the Lord, who already well knew my desperation to live.

This time my faith had certainly grown,,my prayer was more Thy will not mine...if this is what You require, I know You can do anything and I know You know how much I want to work in Your vineyard, seriously, and prepare my family and help them grow close to You. I have a real desire to grow in holiness, to let go resentments and sticking angers. I am still mad at my two female doctors who outrageously missed serious signs of disease for two years. Telling me I was just fat. That must be the outcome of cheating on all those med school tests.

When my mind got so fuzzy I could not pray with words at all, or even thoughts some days. I discovered I could only do a few things with my energy level, so I became aware of DOING things. Like emptying the dishwasher..not in a hurry. I realized I did not recall the last time I did something in the moment, NOT in a hurry to finish an unpleasant task. So I would just empty the dishwasher slowly, while I just BE-ed there.

God blew down an awesome holy priest into my life who helps me. He told me to continue to be and do things slowly but to consciously invite the Lord into the moment. This all started in May when I invited the Blessed Mother to visit me in my home and accompany me during my entire day. So I talked to her ...Lots of dishes, Ma. Glad you are here. It doesn;t matter what I do if you are here with me, in fact it feels better taking my time with you so I can pay attention to your company as I work....

My kids are mad at me. I can feel it. I suspect it is because they see I am feeling worse after the dynamite chemo ended and they are worried, and like me, sick of it all. There is a lot of tension in the house.

Off to bed. You are not alone out there. There are people you don't even know who pray for you. There is a furnace of love somewhere, remembering you at this very moment. We are all invited into that furnace. Cancer is like this, a furnace of love, where everything that is not love burns away, and it hurts real good, makes me feel real hope, and security. I want to see this pot..I am a racu pot, with bits of gleaming metallic starting to show through, the cracks taking on meaning and adding to the beauty, new amazing colors surprising and delighting revealing themselves. How have You made me Lord? I have to sit still and not try to escape the place I find myself in. His first whispered words to me were a gentle 'sshhhhhh....'

It is 1:56 AM. Saturday May 22, 2010. Can't sleep. Sometimes I think I just do not want to let go of a day. Still pretty exhausted, but I feel the Spring of new healing. I feel less crappy. The last couple months of the dynamite portion of the chemo was cumulative, causing me to feel progressively more tired and achey. The side effects have been worse this time than the chemo.

This past Fall, four years after my first stage 4 ovarian cancer diagnosis, with 3.5 years of a ca125 count of eleven, I had a bout of swine flu. A few weeks later, maybe a month, I felt a strange 'sickness' in my lower abdomen, similar to the way I felt when it first appeared. It continued to intensify and work its way up to my right upper quadrant. I went into my internist's office and said "It's back". My doc looked at me with that familiar smile..the 'she looks too good to be seriously sick' look. I said 'run the ca125 anyway'. It came back at 211! Within two months it was 1500.

I called my medical oncologist who was on vacation. Then I called my Super Surgeon, my man of HOPE. He always believes me. He said "Oh they don't knowhow good you look when you are sick".

I would not be alive today if I had not come across several doctors who listen. Like that medical school advice they all learned "If you listen long enough the patient will tell you exactly what is wrong". When I sense something wrong I pursue it until I get an answer.

It is 2:08AM, time for bed. Goodnight my blog friends...peaceful dreams