Sittin On A Porch

Sittin On A Porch
Our little back porch

Thursday, September 30, 2010

Warning, Warning Will Robinson, Danger, Danger

Do you remember "Lost in Space", the TV show from when?  I don't remember, 1960s or was it 1970s? My favorite part was when the robot, tall with long extendable arms and flashing lights in and on his head, swirling around madly repeating, "Warning, Warning, Will Robinson, Danger, Danger!  

This is my way of warning you that this blog will contain some difficult information.  Yesterday Dr. B was on hospital duty so after the lab results came in, he took some time to come talk to us about the treatment, and he dropped a bombshell on us.  He looked straight at me and told us that he had already given us his prognosis of the success of the treatment.  It was not what any of us had heard before.  It was not what we had wanted to hear.

But before I go there, I first want to apologize for asking Mary to blatantly solicit followers.  I write this blog as my journal.  I read every comment, but admittedly, I comment back on so few.  And yet looking into the faces of people that have come to my blog and signed up as followers for this blog, do provide a confidence, faces to picture and love of people who have come over maybe once, maybe more often and spend  few moments sitting on my porch.  I have struggled some times feeling that a few of my posts my have contained such intimate information and yet I put it out there, because for me this blog/journal is how I sleep, how I talk to myself, my conscious, my Jimminy Cricket and I try to as honestly as I can, each moment make a record of this journey and all the side roads and twists and turns.  And having those travel on this journey with me has lightened the load for me, but to what extent have I dumped this journey on others who now pick up a tiny piece and share this journey, helping to carry the load.  Thank you, I will never be able to express how much this has helped and means to me.  So please forgive my blatant solicitation on Bless Our Hearts.  I don't know what came over me, I just looked at Ms Moon and Judy and said, one thing I want to accomplish is to have 25 followers, and you responded.  So a silly request made under new information, and another gentle wake up call from the doctor that this journey has changed, humbles me by how many of you, with out knowing why, sweetly came by and signed into this blog. Again, thank you.

Dr. B comes in to discuss the labs and to let me know if this would be the third treatment.  We had already played find the vein, and it was quite a challenge.  This is the second time this nurse had been the one to insert the temporary port where they feed the premeds and then the WMDs (weapons of mass destruction) into my veins.  The chemicals that are supposed to search out all the insane out of control, what are they thinking these cells reproducing in the wrong way, tiny, wee, party cells that have gone Rogue, if I may use a favorite term often used by Republicans and Tea Party people.  But it is a good term to use concerning these screwed up cancer cells, my little "c", my body taking a journey that I truly never guessed would happen to me.  

And wouldn't you know it I turn out to be one of the 3 - 4% population of people who get a cancer where they do not know the source. I have a metastatic cancer from an unknown source.  A small "c", with a long name that basically says, I have no idea what you are.  And yet it has launched a journey that has been so wonderful and terrible at the same time.

And yesterday as we were talking to Dr. B, I don't remember how it happened, but Mary, Judy and I all picked up that there was something wrong with what we thought this journey was about and what Dr. B thought it was about.

My cancer, according to Dr. B, is incurable.  Worst case scenario, less then a year.  Best case scenario, 3-5 years.  IS this a joke?  I mean people who go to prison can get a life sentence or 3-5 in the big house.  

I have just had 50 mg of benedryl, and I go foggy as he talked.  Not really scared, but more like a slap in the face.  Judy, presses for the whole story from Dr. B.  Our world has just been turned around, upside down.  Dr. B states that he has already told us this information.  We are all animate.  We have never heard any of this information.  I have never worried about the end of the journey because I wanted to experience each moment and not skip or miss all the sweetness and kindness and giving and love that so many people have given me, and now, I have to tell them, once again, this is not quite what we hoped for.



After Dr. B left this adorable little nurse came in and told us that she had colon cancer.  Stage 4.  She had a colostomy bag and a feeding tube.  At 78 pounds they told her she had 3 years.  Never give birth to a child, only have months to spend with the husband she loves and adores.  That was 10 years ago.  She has a 5 month old now.  We can not always predict how the journey will proceed, to end, it is not all science and best guesses by the doctors, it is also up to the person on the journey.  I am sure for as many stories that I could find about survivors living full and happy lives after they have been given their death sentences, there are also stories about people who were good little robot patients and followed the doctors diagnosis and died at their given expiration date.

I am not going to use the doctor's diagnosis as a road map to the end.  I am not going to focus on the end.  Well, other then getting my will finalized, training people to replace me at work, talking to Rich about my retirement and are there any adjustments we have to make with this new information.  Talk to Susan, Rich's sister the doctor and get a second opinion.

So what will this journey look like?  Well, I know I am not going to make any drastic changes.  Right now, this glorious morning as I sit on Luna de Casa back porch, listening to Elvis crow in the morning, the dogs munching their breakfast, bird calling back and forth to each other, Luna the cat calling her insistent cry to be fed as she marches up and down through the gardens, I know that I want my life to be right here.  No, not at Luna de Casa, but my place.  Snuggled up in a wooded area that 3/4 of the property is a cleared pasture that I have been planting an orchard and vineyard in.  I want to clean out my veggie gardens, my flower gardens.  I always feel stronger and more connected when I am sitting in a garden, weeding or planting or harvesting or simply admiring the beauty of the crooked rows, the tenacity of the plants, the micro environments that bring caterpillars that will burst into their gaudy wings and will flit from flower to flower gathering pollen and nectar, providing movement, grace and beauty to my little world.  I want to spend time with my labs, my cats, chickens and rabbits, feed the fish in the lotus pond, fill the nectar in the hummer feeders.  I want to live the sweet, beautiful life I have, right here, with my beloved ones.  Yes, I do want to do more traveling.  Vicki and I have planned to go to Great Britain, to Scotland to see our property, in England to walk along Hadrian's wall, to have high tea in the Pump house in Bath, to stare at Stonehenge on a foggy, dewy morning, and Avery.  I would like to travel to the Pacific Coast Highway in the height of summer to search for the Anna Hummer, yes, I want to add a few more birds to my life list.  To ride a motorcycle again, not drive it, just play opossum girl on the back, clinging on tight as we fly through the air.  I would like to go up in a open cockpit plane , I really would like to wing walk, but I have yet to find anyone with that type of plane who thought this would be a good idea.  I guess that is the beginning of my bucket list.  I have done so much in my life, and I don't plan to change that now, balance my life here with my job and travel.

Maybe the lab results will tell us more, something different maybe.  I am not the type of person to let go and give up, to get angry, ask why or throw myself into despair.  The science will help guide us on the journey and in three weeks they will run those scans or X-rays or whatever they need to see if this chemo has made any difference.  Will there be more hope?  I don't know, we will have to wait and see.  But without fear and trepidation, I have to be clear minded and strong right now, to see what I have, a new idea of this journey.  

Remember if the doc is right, this is not new, this is how it was last week, I didn't know that, but nothing is different from last week, but the perspective. A perspective that is shared with so many beloved, and for my dear Ms Moon and her support Mr Moon, and the kids, for Judy and Denise.  They are the front line, they are the ones that share the emotions that save me.  Judy is angry about how we found out and how this was handled so badly.  Mary is sad, I am turning to science and the tests and their results.  That gives me 3 weeks that I can be in denial before the science either elates or slaps me.  I know I will have to take the emotional journey, but when you are angry or sad you may not make the best decisions.  Say the right things.  And because of the amazing love and energy that Judy and Ms Moon give me when we are going through this process, they help me to have the time to take to let everything sink in.  To decide what I do next.

And then of course there are all my dear wonderful friends at the Opera House, and at work, and my beloveds like Vicki and Susanand Linda, friends in Spain and the Netherlands and spread across this beautiful country of ours, way too numerous to name.  Thank you all, and for you who came over after my "Make a Wish" moment with Mary, saying, just 25 followers, not 24.  The number seemed important, and as you responded and the count went higher, it was not as important as a number.  No the fact that you are such kind and caring people, you listened to Ms Moon's request, and because you love her blog, her language and thoughts, her love and anxieties, her sweet caring self, you gave me my only wish.  Thank you.  

And for all of my beloveds, I wish I could have told you this turn of events in a more beautiful way, maybe with a more hopeful ending to this journey.  But it is not over, and just because they can not cure this little "c", I have never been good at following directions that I don't believe in.  That is how I ended up in that corner in Kindergarten standing next to Vicki.  And oh, how important that moment has been in my life.  Like meeting Jennifer in second grade, like meeting Susan and Linda at UF, like meeting my dearest Bob at work 25 years ago, and Debbie and so many others who are such a part of my life.  Every turn on my journey has held experiences that have led me here.  Now I will continue on this journey and live each moment, like sipping martinis on the Moon porch with Ms Moon and Judy.  Like sitting across the table at Essence of India with my Rich, or across my desk from Bob or Phyllis.  These are each precious moments, the breath of life, the simple easy to miss moments in a busy world.  That is it, my world seems slower today, more clear, more confusing, but again, if I stay right here for this moment, fingers clumsily gliding across Ms Moon's Mac, I am still so very very grateful for this journey, and the knowledge that I did not have on Tuesday.  Today I know a new story and a new journey, one not given to hope, but I say right now, I do feel hopeful that this journey will continue to be as amazing as it has been these last 6 months.  And that I am strong enough to face and cope with all those things still to come.  And I will not be afraid or angry.  Sad, maybe, thoughtful and meditative hopefully, and welcome the joy and love and kindness and sweet life.  And then where and when this journey will go or end, I don't know.  I hope I know at the end, that it is the end and that I look straight at what will come after this journey ends.  And that those left here, will sometimes think of me and smile because of a moment, a simple point of time where we shared something.

Thank you all, and now you know that this journey is probably not heading where we thought, and if you don't want to take this journey any farther.  Then we will pull the train over and hug and kiss and wish you well.  Thank you for the time you shared with me sittin on my porch.  And know that I understand completely, each of you are on your own journey, and mine just may be going in a different direction.  I appreciate all the comments, love and support on my little blog and for Judy pushing me to keep a journal and for Mary helping me to start this simple journal blog.  It does help to let go of yesterday and to face today, less burdened.

This is not the end, this is just another twist and turn on this journey. 

17 comments:

  1. Kathleen, I know that this is not my business. But I would like to see you go to a medical facility like Duke. It is the best in the nation or one of the best. This is your life. I want you to fight for it and not be resigned to just a few years. Every day matters. There is much still that is unknown. There is also the Hollings Cancer Center here in Charleston. And my good friend Michelle went to Mass. General where they worked wonders for her--she is still alive after 10 years of metastatic cancer of unknown origin. You are a scientist--I hope that you use your scientific brain to search for the best place in this country to get treatment. I apologize for being so strident on this. It is just what I believe. Peace to you and a hug.

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  2. xxxx

    big hugs and positive vibes and don't feel awkward about sharing this. I hope this doesnt sound flippant, but it's beautiful writing about such a terrible time for you. ...and I feel quite privileged that you give us a chance to share it.

    and that Mary Moon, she is a relentless good influence on all of us!

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  3. Thank YOU. You're a strong, strong woman -thanks for letting US be a part of your journey.

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  4. Just as SJ said, thank you so much for letting us be a part of your journey, we are all, undoubtedly, more humbled and inspired for it.
    Right here and right now, I really do think you are one of the strongest women I know about....

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  5. Kathleen,
    quietly taking these words of yours in . they are a celebration of life.
    a gratitude that many never know...

    and a gift. thank you.

    in the perfect life I would love to pass by and join you and Ms. Moon on the porch for just a wee bit .... it would feel sacred, I just know it.

    oh, and I have never done the follower thing btw, so it isn't personal, and you've reached your goal , so that is good.

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  6. You know how I feel. And I feel it all so deeply.
    Yours forever...MM

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  7. Ok, Kathleen get a grip, with both hands, go out and do whatever you can or want to do physically between treatments with whatever time (short or long) your Supreme being of choice has decided in his log book is yours. Do those things that are necessary (wills & stuff) fight long and hard to the last however long. BTW I may not post comments but you know I have always been thinking and praying for you and that will continue. Love

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  8. I'm on board for the duration -- and I have to imagine that it might be a really long, often arduous ride, but I emphasize long. I am so sorry that you received this "news" in such an abrupt manner -- I'm so sorry that you have such a road in front of you, but I know of several people who are LIVING with cancer -- I understand that it is a new way -- I wish you strength and courage (which you already have) and many, many moments of ease as you move forward. Love to you and your beautiful friends.

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  9. Dear Kathleen, I have been following your blog/journal from the beginning and have not missed any of them. I don't often comment, oh, I guess I didn't know if I might be intruding, but you are such an inspiration to me. I thank you for sharing the intimate aspects of this journey you and your most loved ones are on. I send you love and hugs and healing. You are one remarkable, dynamic woman!

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  10. Dear Kathleen,
    Do whatever you need to do. We are all with you, whatever you decide. It is a privilege, and you are quite a writer, who just happens to also be brave and lovely.

    You are, as always, in my thoughts.

    Love,

    SB

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  11. Kathleen, As I read your story I thought throughout... she is going about the business of living. I am feeling sad, but also I feel hopeful. You wrote so beautifully and the overwhelming feeling I got was one of life.

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  12. Kathleen, hey.

    I love how you think. You sound like you are standing your ground and continuing to live fully.

    I am very sorry to hear that your doc gave you this news... I'm hoping that your second opinion comes from Sloan-Kettering or the Sylvester Cancer Center in Miami... (Sylvester is a learning hospital and they are incredible). There may be something cutting edge out there that may not be available yet here...

    I love you and I'm here...thinking of you, and sending healing waves your way.
    xoxo min (pf)

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  13. Kathleen, I am sorry about both the news you received and the manner in which it was delivered. I believe those are only numbers, averages at best, and your life is not limited to those predictions. I don't think you could be considered average at anything. You've taught me so much already about strength and bravery and living, and I'm humbled to share in your journey through your amazing words. Sending good thoughts and high hopes across the wires.

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  14. Kathleen - We are happy to be allowed to share your thoughts about this journey your are on. Thank you for putting them out there. Glad your wish for more followers has come true. Keep wishing and envisioning your future. Sending love. N2

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  15. Kathleen- I love you. I am amazed by you. You are so so beautiful.

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  16. Your post made me think of a line from Steel Magnolias, when Shelby says: I would rather have thirty minutes of wonderful than a lifetime of nothing special.

    I'm all for continuing to go for the wonderful.

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