Pati Toole Unplugged

Favorite Hikes

How about sumthin a little lighter? I was going to list some hikes in the "list" section but then realized I want to describe them, so here goes...

Favorite Hikes:

Grenada 1996.

When we were about to graduate from Seminary we took what we thought would be that last big trip before kids and steady employment. Traveling all over Italy was fantastic. Then that baby didn’t come as planned.. Not getting pregnant right away Jim was great at distracting me by going on continual "last trip(s) before kids." When his Dad offered 2 free frequent mile tickets I headed to the Library to look up which Carribean Island was the cheapest (once there), had rain forest, beaches and was low key. Grenada and the little Grenadines was the winner! We took a Mail Boat to the outer Island and mostly spent our time in a little beach front Cabana, collecting Conch Shells, walking the Island soaking up sun and practicing Spanish.

We left enough time to hike some Rain Forest on the main island of Grenada on our way out. The trail seemed to end in unbroken thick rain forest "wall" in the middle of the forest. Our ride was waiting at the end of the trail not back at the beginning and we were pushed for daylight. As we tried to peer through the wall of jungle in front of us we looked down the steep Mtn. To out left. We began to see little red ties that had so far been helpful in designating the trail; tied down a long trickling water fall! Could this really be the way?!? Defn. Not in the United States National Park system it wouldn’t be but we were not there. We had to literally hang onto vines and hoist ourselves down a long way. Thank God I didn’t notice any snakes or I might have accidently let go. We found more markers at the bottom and followed them out to a small town. We still can’t believe that after 4 hours without seeing another soul we actually ended up in the right place and not completely lost with black panthers eyeing us for dinner. I still feel a little conscious for the just cleaned taxi, a mini van. We were completely covered in mud and debris. The driver was a little irritated but allowed us in. The locals just smiled and nodded knowing the trail we had done.

It felt great.

Stay tuned for :

•Belize/Costa Rica 1990 honeymoon.

•Guatemala and Mayan ruins 1991.

•Scary Venezuela, 1994

•Easy Italy, 1996

•Stupid Winter Half-Dome 1995

Jake born in 1998.

The Big D

I’ve battled 2 life-threatening diseases and I confess to you I’m not sure I could say which is harder. There is certainly more understanding and empathy for the Big C than the Big D. I’ve had clinical depression for the last 20 years and have been to the right kind of Dr. for the treatment of it the last 5. While it is mostly "managed" now I have enough episodes to keep me humble, remind me of how it is truly a medical disease requiring medical help; and sadly accept that I will probabally never be pronounced "cured."

I can observe traces of it running through my family. I am grateful to live now when so much more is understood about the Brain, it’s many Chemicals and how easily it seems at times they can get all jumbled up and out of balance. The older I am I can cling to the hope that "this too will lift." For as sure as it’s haunting grip can wash over me in a sudden unpredictable "crash" it has always eventually lifted. Gone as fast as it came. Bye. Poof. Please don’t visit me again... Haven’t we been friends long enough? Will you now please be my enemy? Stay far, far away. I confess too, that few things in life make me shiver than the thought of for some unknown reason the big D not lifting.

Therapy, medical help, time, growth, perspective, writing all help me cope. But, the sweetest gift is talking with someone who shares the pain and knows exactly what I’m going through. Who has absolutely no judgment or advice because they know how random and unfair depression is. I have a few fellow sufferers now. Their ability to bluntly talk about the day to day reality is an immense blessing to me. It does seem to be a condition that is very difficult for some to understand. Distinct from the occasional appropriate sadness in grief or loss or "Baby Blues" Clinical Depression just isn’t resolved from "getting out in the sunshine, drinking a glass of o.j., thinking about what we have to be thankful for." How we wish more than anyone in the world that any one of these would just work or any other simple remedy for that matter. Believe me, we are the first to try, to hope, to believe. Try so hard. Only to be taken down - over and over again. The wave that is just too strong, no matter how hard we attempt to stay afloat, taking us under.

So, I HOPE that by going "public" on a very private struggle will somehow uplift my fellow sufferers. For with all my heart I believe that YOU are the true Heroes. The amazingly strong, sometimes daily, often unknown survivors of a much less known life-threatening disease.

May you be less alone.

"Like a hole in my head."

More Biography... Who was it who said "To laugh at oneself is the key to a long life?" 2/22/07

I think of myself as a Midwesterner. I’ve lived in Ca. all my life and within Orange Co. for half of it but part of my heritage is farmers in the Midwest. My Mother is from the United States water ways as her father was Career Coast Guard. My Father was born in Missouri and what his parent’s found in each other was that they both wanted to get out of farm life as soon as possible. They bravely made their big migration to California with nothing but hope, faith and 12 kids in tow when my Dad was still a boy. This monumental decision along with my Dad’s decision to send himself to College when no one in his family or ancestry had ("it just seemed like a wise thing to do") he quips; changed the outcome of my life I am sure. My Mom and Dad’s love for education was instilled in their children with all 5 of us attending College without question and 4 of us going on for advanced degrees.

In many ways I am a Californian through and through. Take me too far from the Ocean and I will probably dehydrate. I still catch myself saying "like"... "coool" even an occasional "farr out." I got P.E. credits for learning to surf at Mission Beach on Friday afternoons and appreciated the shorts and t-shirt only dress code at SDSU. Many of the kids I grew up with and graduated with from Sunny Hills High are still around and we are getting reacquainted.

Yet, I like to call myself a Mid-Westerner because it helps explain to me some of the slight ways in which I never felt like I fit in. I deduce this through "solid" scientific research I have done. I noticed that a couple of friends I have from Kansas and Nebraska have some of the same expressions that I use. Jim’s favorite of mine is "I need this like a hole in my head." (The O in hole has to be elongated when said). I have a high work ethic and while hoped for economic stability in life, never expected to be wealthy or to have things easy. Most mornings I woke up to a deep voice bellowing "early to bed, early to rise makes a man healthy, wealthy and wise.." I tend to not chat a lot. I'm a bit more like Curly in Billy Crystal's mid-life crises movies than a nice Southern Belle. Don’t get me wrong I ADMIRE those who can put anyone to ease and seem to always have the perfect thing to say. But, I was raised to simply use words carefully and infrequently. This is usually fine except at social gatherings, parties, and the like when people are used to one looking them in the eye and ACTUALLY TALKING... In our early marriage, I kept begging Jim who was raised in the South and (who seem to culturally have a one up on the rest of the country for social hospitality), to please just teach me some basic conversation starters but he liking me for who I am wouldn’t do it. And that may just be a Southern trait, clinging tightly to one’s own culture and not readily giving it away.

Back to the Mid West. When I visited friends there I felt oddly "at home" among it’s peoples. I could sit quietly in a group of people and know that I wasn’t supposed to rescue and dominate the vacant air space. I wasn’t too into the Cow Tongue at the chili joint down by the tracks but I knew enough to keep my mouth shut and talk about how good the hot chili was. The lightening storm miles away was unreal. I had to jump back more than once as I witnessed that bolt extend all the way to the ground somewhere near. The slower pace; in movement, speech perhaps even in drive, the changing culture with the increase of crime, decrease of newspaper subscriptions and sense of a fading way of life with the ebbing manufacturing and farming leaves a hint of pervasive sadness. Like a fine mist that you can’t see. Could it be, that is where I get the Melancholy? It does seem to hover. And it is accepted as a normal part of existence.

If you've caught Lou Dobbs in the past several years you have heard about his steady worry for the shrinking Middle Class. A wipe out which we do not really SEE here. In fact for most of us whose income is based in So. Ca. we could almost say "What Recession?" about the last one. I believe the Mid-West will be alright. Just like one hangs their head and sludges through yet another cold, bitter snow storm - they trudge ahead. Accepting of fate. Honest and true. Without much complaint. Their Winter’s certainly teach perseverance. Yes, they will adapt, figure it out, move on. Still volunteer their sons for War. I just don’t know if the rest of the country will be all right without a Mid-West.

I ran today...

2/17/07

I ran today!  Wind in my hair, along the beautiful new coastal trail in San Clemente.  Joyfully bumped into more than a few of you too.

I ran today.  2.2 years after diagnosis.

I never was much of a 'runner.'  Swam, cycled, aerobics, dance but just didn't seem to have the right physique for jogging.  Always wanted to.  Like the idea of it being free, being outside with our weather and being able to do it anywhere I traveled.

Now, I actually like the toughness of it.  How starting it is the hardest and it gets easier from there.  Nike was right.  Just do it.

I ran today.

I partly need to thank my dog Cuddles.  He gets a bit wild when he is not walked.

And my faithful friend Lou, who will always squeeze in play time no matter what (even if it's her 3rd walk of the day).  Now that I think of it, she is a bit like Cuddles.  Chasing the wind.  Can't wait to see her at 90 poking people with her cain to make me laugh.

I ran today. 

Thank- you God.

The Good, the bad and the Ugly

Funny, inspiring or awfully truthful moments along the way in my battle with Cancer. The Gifts that kept me going. The things I don't want to forget.

Written November, 2006

My 4 years old son Conor, seven months after a masectomy seeing me in the bath and asking for the first time "Mommy, what happened to your other one?"

Upon seeing my new box of hats to go on my bald head Conor immediately decided that the soft blue sleeping hat with the moons and stars was his. As it was the only one comfortable to sleep in I kept trying to get it back but would continually find it in his room the next day. We call him our little badger. Afterall, his room has moons and stars!

The kids and I all voted on what color my hair would be when it grew back. We had heard many times that it often grows in differently than before. Conor voted for blue! Boy was he disapointed.

I sort of think Conor is just sick of the whole thing. Tired of me complaining. He just tunes me out. Right when I feel that I need the most emotional help, my quota help is full. (Well, kids are supposed to be self-centered and the brutalness of battling cancer with young kids has it's hidden Blessings - they don't let you stay on your butt for very long!)

Things I look forward to. Running. Running with the wind in my hair. Not napping. Picking up Conor. Being consistent for Jake.

Maybe after 3 weeks of taking it easy around here, my energy will get better. Maybe I can take a little less dose of herceptin? ( Ha, no way!)

When I got my port o cath put in there was a little bump under the skin with a scar where it was inserted. I told my boys that now I had secret powers. (I was thinking of Bourne Identity where the character is found with a CIA tracking device inserted under his skin).

When I joyfully got it removed as quickly as possible after 2 years of i.v. treatment, I felt a strange, unexpected sadness or loss. This thing, this pathway for life saving medicine was now gone.

At least I wouldn't have to worry about setting off the Airport metal detectors anymore. (Jim always wanted me to try to set off store alarms).

When I told my fellow church staff that I had to quit after only a month after returning because I was too exhausted, one said "Is this open for discussion? Are we there yet? Why not just another leave of absence?" These words blessed my soul to no end.

One surely does not know how they will respond to Cancer treatment. I, fortunately "responded" just as the Oncologist hoped for - healing and staying on course. But, I was sicker than a Dog in Bed for weeks at a time. One surely never knows how they will respond... What they will want... How much time it will take to recover and restore.. I am convinced that no one in the world has had more support and flexibility at her place of employment during Cancer than San Clemente Presbyterian Church has given me as a Associate Pastor. No one.

I’ve had great responses to my cancer journey e-mails and my sermon regarding it all! This has encouraged me to write more. The whole thing has made me more confident.

The Kingdom of God and Missional work became crystal clear during my cancer treatment.

Herceptin became available right when I needed it and was 100% covered by my insurance. It boosted me statistically from 50% to way up!

Forgive me Lord, so much to be grateful for! Forgive my self focused attitude today. Thank you soo much for the disability, allowing me to take more time off work and to heal and get strong. Forgive my attitude.

My Italian neighbor holding my face in her hands and saying with all the confidence in the world "Your going to be allright." My Massage Therapist and Dental Hygenist having the same strong sense.

People praying for me, literally from around the world. Australia, Asia, Africa, Europe and all over California!!

Getting to worship and to live alongside so many sisters and brothers in Christ who are also survivors or have been taken from this vicious disease at SCPC. From age 8 to 80.

The strong walk of my female oncology surgeon. Although she doesn't like it when I say this, I could always hear her shoes coming down the hall. Strong and confident. Ready to take the hospital, world and my disease by storm. She has since opened her own practice, the first female owned Breast Care Center in Orange Co. Her Practice is booming and she deserves it. More importantly she provides topnotch wholistic care. Dr. Lisa Curcio has recently gone public about her own battle with breast cancer when her first child was quite young. When she seemed a little shaken after my first biopsies, I looked at her in the eye and I said, choking up "Now, I have a 3 and 6 year old, I want to hear you say I'm going to get through this." She looked at me back, and said "I also, have 2 young children, we are going to get you through this." I could tell it was hard for her to say. Knowing the reality of my diagnosis. But, I needed her to say it. Needed to hear it and needed her to believe it. And she did. Thank-you dear for not hesitating to remove my breasts when they were threatening my life. Understanding what was more important. And for being there for me, long after. "Do you need any of those good mood altering drugs?" (our inside joke).

The twinkle in my Oncologist eyes. His careful, gentle touch. His brilliant mind. And especially his not backing down on treatment no matter how much I BEGGED.

The hand knit lap blanket and shawl.

The handstiched prayer quilts.

The Yard.

The House.

The homemade earrings. The neighbor who dragged her teenagers over to clean house.

All the Meals.

And the fellowship that came with them.

The Flowers that arrived in the mail, so beautiful, seemingly random. I couldnt' figure out why they were sent. and then I remember the discouraging email I had written the day before. Such graciousness.

The Cubboards.

The walls. The window sills. The moulding.

I'm afraid that when I am blue these days, people look at me like, "are you crazy? your alive!" I guess it's just all part of being me. Feeling things deeply. Being Melancholy during Holidays. Sometimes embracing life and all it has to offer and othertimes wishing I could just pull up those covers over my head.

I guess it's just all part of being me.

And it's gonna take some time until I feel and understand all that has gone on these last 2 years. I guess it's just all a part of being me. It'd be a good time to write a new song, play a new tune or scream my head off on stage...

Thank-you for sharing a piece of the journey with me by reading this and sharing the load.

Rev. Pati Toole

Pink mugs and red hots

"Love is what you’ve been through with somebody," James Thurber.

Tomorrow is Valentine’s Day. Starbucks is filled with pink and purple mugs, Albertsons has a red isle, those of with kids and busily making sure the 33 or 20 are signed and most of us still dieting from the Holidays try NOT to think about chocolate. It is a time to remind the One that we love that we do, and to encourage those who no longer have a significant other of the other Valentines in their lives. ( I don’t make light of the painful reality that holidays tend to throw in our face.)

Aside from all the cheesy commercialism, I need to add some mush of my own.

My husband brings me coffee every morning. Bonus now that he roasts his own!

In college, I woke up on Valentines and found chocolate kisses and confetti thrown all over my room. And they were thrown (through the window) because it was an all girls dorm. He made me still feel attractive, bald, bigger and missing one breast. He believes in my dreams and is a big dreamer himself. He equally parents our children and offers a different perspective. He is kind and tender and he listens. Our union brings together two passionate, strong thinker’s which hasn’t always been easy. We tend to fight a lot and how I do regret all those harsh words, especially more so the older we get. I THANK GOD for granting us the determined commitment we had towards each other during all those rough times and for all the insightful tough therapists who brought us in line and back towards each other. I’m thankful that we both come from parent’s who have stayed together over 30 years and for the relative unconcious security that gives us. I treasure our shared interests and the crazy scary hikes you have taken me on. I pray we grow old together, when I am finally patient about your "hard of hearing" and no longer mind you getting up so often at night. When I instead (as I am more now) so thankful to have your warm presence near. But, if God chooses to take me early I can’t stand the thought of not having told other’s how happy and rich sharing life with you is. While I have never described my marriage as ‘model’ I couldn’t be happier that you are ‘mine.’ Thank-you my dear husband Jim. My valentine for 18 years. I hope that when my time is up I have learned to love you well.

Romans 12:12 "Be joyful in hope, patient in affliction, faithful in prayer.."

And for all of us post 40, a quote from Agatha Christie "An archeologist is the best husband any woman can have - the older she gets the more he is interested in her."

May we all renew the excitement of discovery in one another.

The Story Behind this Blog Part One

Feb. 06, 2007  The story behind this blog. Or “My long walk back to full health.”

            The idea for this blog came from my husband due to the positive response to my e-mails during my cancer journey.  I was on staff at the time, San Clemente Presbyterian and (hope to be again soon).  The Sr. Pastor, Tod Bolsinger would “blast” my cancer e-mail updates to our 1,000 or so Church members. 

            Although I am now free and clear of any known cancer the journey toward full recovery continues.  I have weight to loose ( breast cancer patients gain an average of 30 lbs.), unfortunately I was no exception here.  I have energy and stamina to regain, further change in eating habits and exercise and an overall reduction in stress to achieve. I’ll take Tamoxifin pill every day for a few more years, which doesn’t help any of the above.   Mostly, it is the journey of figuring out the “new me.”  I have a new body, the same brain - that got zapped pretty hard and doesn’t seem to work quite the same,  a whole new sense on what is meaningful and how to live.  I am a fortunate survivor with the love of my husband, children and church community intact.  I did not have the severe financial strain that so many patients endure.

            

The Story Behind this Blog Part Two

For those of you who are new to my journey let me recap briefly the cancer part.  I do not claim to have all the medical jargon exact.  On Dec. 27, 2004 while the horrific tsunami waves were decimating  so east Asia, I went to my Doctor for a sinus infection.  I was 38 years old and in general good health, married with two adorable boys age 3 and 6.  “By the way,” I said “ I also have this lump I’ve been watching for awhile that doesn’t seem to be going away.  Maybe it’s related to the draining of the sinus infection into the lymph nodes??”  My Doctor, a recent cancer survivor himself took one quick  palpitation and marched me out the door and pointed to the imaging center in the next building.  As I walked over he got on the phone to them and got me in right away.  Well, the young technician seemed quite nervous and called the Doctor of radiology imaging in.  The whole time I am thinking ahh, she’s nervous, he is training her isn’t this all so nice.  Well, right then and there he told me I had cancer and I almost fell off the table.  “Don’t you have to do biopsy first?  You mean you THINK  I have cancer right?!?” No, there are some we can tell just from imaging, and this is cancer.  So, my own waves started crashing and flooding and crashing and flooding.

            Probably the worst moment for me next to diagnosis was finding out it had spread to 12 of 17 lymphnodes.  I broke down weeping in the kitchen with my husband apologizing for not being more careful with my health because I thought for sure this would mean I would die, abandoning him with two young boys and NO life insurance policy.  My husband did not waiver.  He just held me and said “No, I really think you are going to be alright Pati.  I don’t think it is your time to go.  I think God is going to do something here.”

The Story Behind this Blog Part Three

The absolute best moment was when my Oncologist brought Jim and I to sit down in his office, review scan and test results and talk over the treatment options.  I will never forget his words.  “You know Pati, all of us on the tumor board were pretty nervous about what it would take to beat this thing.  The size of tumor, the kind of cancer - so I kept putting you through test after test and scan after scan to see where else the cancer had spread so we could determine how best to treat you...  And the scans kept coming back negative.  We cannot find an ounce of cancer anywhere in your body post surgery.”  And I started to weep, I knew right there and then that God was involved and was going to save me.  My Dr. Said, you know I am a Christian, and I don’t say this that often in this room, but I do say that I see evidence of God here.  Now, don’t get me wrong you will still have to do all the chemo, radiation and tamoxifin but things are looking good.

             I  walked back over to my primary physician’s office after that first telling mammiogram and ultrasound in a daze, waited awhile and then had him walk me through what he thought the protocol would be.  “But, remember he said, and I am speaking from experience here, you can beat this.”  That was ALL I cared about from that moment on.  Beating it.  Living.  Surviving.  When my Surgeon was getting biospsies I asked her to tell me I would make it.  I could tell it was hard for her but she took a breath, looked me in the eye and said "You will get this through this."

            My journey of acknowledging I had a major disease that could be life threatening, totally BLEW IT not acting on the lump IMMEDIATELY and the consequent harsh but life saving treatment began with a down pour.  By Jan. 17, 2005 less than 3 weeks after diagnosis after many scans, biopsies, tests etc. in between,  I checked in to have a total right masectomy.  I could decide about the left side later.  3 weeks after that I had the still draining tubes pulled out so that I could enter chemotherapy.  Dense dose, which is 6 months of medicine given in 4 months.  Though I was in bed very sick for 4 days at a time, I faired very well medically speaking.  My blood counts stayed where they needed to and I was able to finish treatment on schedule.  My husband took us all to Hawaii to celebrate.  I came back and began radiation for the chest wall, every day except weekends for 7 weeks straight.  I praise my Doctors to no end.  I had exceptional care and brilliant people.  But, the technicians and nurses were the medical staff that really kept me coming back. 

            After all this, due to the type that I have her2neu and estrogen positive lobular carcinoma non insitu to be exact, but mostly due to the late stage of discovering it, I still had statistically about 50-50 chance to live.  After all that!  From the get go, I refused to hear statistics or stages.  I wanted to stay positive and believe.  My oncologist told me that it is true that Young Mother’s tend to beat incredible odds because they want to be around for their children.  And then, right when I needed it.  Right on time, Herceptin became approved on the market.  The astonishing results of the latest breakthrough breast cancer drug were reported and truly elated the Oncology world.  I started Herceptin, given weekly through my chemo port at the same time as radiation and I continued it for one full year.  This drug, which is relatively a cinch to take and has few side effects boosts me statistically way way up.  Up where you want to be if you have to hear a statistic of survival!  Thank you God for getting me this, right when I needed it.

            And so there are many “past entries” regarding my Cancer like “The wonderful kind things that happened to us along the way,” hilarious comments by my children, more medical details and gut wrenching soul searching regarding the meaning of it all. 

            But, this Blog is mostly for and about today.  I hope that writing about all my experience in life will provide some comfort and encouragement in yours.

            May the Peace of God that transcends all understanding hold you tight today.  Amen.

        

What I'm learning from parenting and a Anglican Priest

"Eye yi yi" - does everyone have this hard of a time parenting? I have one son weeping because brown pelicans are being killed by DDT. He wants to call the President and tell him to stop use of it! Of course, he is telling me this while my other son’s mattress is being delivered and I was trying to clean up the back log of dog poopy in the backyard. Meanwhile my son who is upset is also taunted by his younger brother who although he is sympathetic to his older brother’s passion for saving animals is not so tolerant of his prohibition against eating his gumballs. "But Mom! I just HAD to have a BLUE one he wails."

On a day where I’ve been nourished from reading N.T. Wright, the Anglican Theologian I am sympathetic to my eight year old’s sense of injustice to birds by careless humans. I tell him that we will look into it and perhaps write our Congress representative. (I thought that stuff was outlawed a long time ago, but a great learning experience all the same). I assure him that there are people who are working on this called Environmentalists and that his Uncle Joel has been one for a long time. This seems to calm him down enough to eat a healthy snack and wait for Dad to come home. "Hi Honey!"

N.T. Wright expresses that the very fact we are born with a sense of right and wrong, Justice and inequality points to a Voice behind all of Creation. A voice that we long to hear. A whisper of hope and sometimes a shout that maybe someday all will be right and made right in this wicked world. We are naturally infuriated when we first come across the inequity of life and basic injustice. Like Jake and DDT, we do not need to be taught the concept of imbalance or fair play because we innately understand these concepts. Furthermore, Wright claims that we long to hear the Voice, to know and understand The One who created us and the world around us. The One who set into motion a natural order in which humans are to care for each other and all creatures, the natural land, air, sea in which we dwell. When we don’t all hell breaks loose. And people get hurt. Really hurt.

The great news is that contrary to popular Christian belief, we are not here to grab as many souls as we can for Jesus to take with us in some epic final battle and leave all this sin marred world behind. Heaven is so much better than that because it begins now. As believers we live in the intersection of Heaven and Earth. We get glimpses of how things ought to be and will be upon Christ's final return during Worship. And we get to carry out this image, of kindness, righteousness and justice every day in little ways building the Kingdom of God.

While parenting is exasperating at times, it is encouraging to note that while we are pouring into our dear little souls and teaching them to care for themselves, others and their "little world," we are instilling Kingdom values and helping to restore the natural order of things. Rather than accepting the common Christian notion that all the world including the "environment" is wrecked, beyond repair, and will be destroyed anyways - so why bother? Instead we can embrace God's creativity and tend to all that the Almighty has put into our care. Not only is God still at work redeeming us and all of creation but God invites us to PARTICIPATE in that work! To me, that is incredibly inspiring news. And one that I just don't hear about on the Christian air waves.

I pray that my young son's focused passion will not be completely snuffed out over time as he confronts the overwhelming amount of horror and unkindness in our world. I hope that instead of then throwing up his arms and resigning to grab all he can get and just hang on, that he would join those who courageously choose hope. That he will be among those who know the deep enduring peace, comfort and joy of joining God in His work.