Sittin On A Porch

Sittin On A Porch
Our little back porch

Friday, October 8, 2010

Here's the plan

Yesterday was 8 days since my last chemo when Dr. B had said that his office would contact me with the appointment for the follow up scans.  They usually call  within a day or two.  So I called and left a "non-urgent" message asking for the date and information about the scans.  The nurse called me back the same day, nice, and told me that Dr. B would see me next on October 20.  No, Dr. B ordered another chemo treatment, number four, for October 20th, while we wait to run the scans and get the results.  The nurse looks through the records, nothing from the doctor about follow up scans. 

So let me think this through.  We start this journey thinking that I have thyroid cancer.  That does not  test out to be true, instead it turns out to be metastatic cancer from an unknown source.  That is the name, or as Susan in CT points out MCFAUS for short.  Yes, that is the name, people keep asking me, "Have they figured out what you have yet?"  Yes, the medical name for the type of cancer I have is metastatic cancer from an unknown source.  That shouldn't surprise anyone, I have always been a little different, why would I be normal and get a name after a body part for my cancer now, no, I am special, I am in the 3-4% of the cancer population with the type of cancer I have.  But I always thought that this was curable and treatable.  In all fairness I never directly asked the doctor if I was going to die, but "incurable" seems like one of those important bits of information and it is the doctor's responsibility to give you the full name of your cancer, Incurable metastatic cancer from an unknown source.  Seriously, I understand it is my responsibility to ensure for my own health and medical treatment, but I have never had cancer before and I did not know the questions you should ask.  I didn't know you were to assume incurable before a healthy, strong person would assume treatable, curable.  

But how long can I go thinking about dying?  I just find it very hard to live and worry about dying at the same time.  But I have some things I still need to finish, like some of the ideas of the lawyer that still need to be completed and well I am having some fun playing on this dark side of humor. I plan to have my last birthday party dying of cancer.   I mean I still need to consider the possibility of living with incurable cancer.  We met a woman in the doctor's waiting room and she is alive and living and looked amazing and she is living with incurable cancer.  So still lots to think about and put into perspective.

Monday morning I will call the doctor's office again and see if I can find out what is going on with these follow up tests. 

And now my birthday.  Which actually isn't working out at all like planned, but I think it will be so much better.  GEO is celebrating it's first year anniversary on October 22.  Well, I can't have my birthday where they are having an anniversary party.  So instead I will get a cake from Publix and have a birthday party at work in the Conference room, and then Ms Moon has sweetly and graciously volunteered to have a party for my friends in Monticello, which is basically the Stage Company at her house.  I am making cupcakes.  So actually everything worked out just fine for my last birthday party.

Yep, my 55th birthday will be the last birthday I celebrate dying from cancer.  I am going to learn how to live with my cancer and next year I will celebrate a new birthday living with cancer and each year after.  I mean I don't want to miss the opportunity to celebrate my last birthday, even if it doesn't turn out that way, it fits the doctor's worst case scenario.  Most people will never know when they are having their last birthday, so why would I give up this opportunity.  Because I may not know when my real last birthday is.  

Sorry, I know I have a weird sense of humor, but it makes me laugh.  

Tonight was the Waukeenah Methodist Fish Fry.  I love church dinners.  I don't care if they are cover dish, fish fry, whatever, I am a Southern woman and I love these dinners.  So off to the church for to go dinners, and the food was wonderful.  And I ate it all.  I was down to 121 on Thursday morning.  That is not good.  125 should be my low weight.  That is thin, but not unhealthy.  

Thursday afternoon I went to the store and bought a pair of jeans and three pair of pants that fit me much better then the clothes I have now.  And it felt good.  It wore me out completely, but it felt hopeful.  I mean if I was really dying then I wouldn't need new clothes.  So I am glad that I went out and did this. And today I wore clothes that fit me, and I even put on makeup.  Taking the effort makes me feel better.  

Did you see the sky this morning?  All this week the sky has been clear and cloudless with a brilliance of red, rose, orange and yellow blazing into the morning sky.  What a way to start the day.  I love my morning drive, the animals, the light, and watching the seasons through the trees and flowers.

So, I have a new plan.  I like my plans.  The most important thing to remember about plans though.  Continuously review and adjust to meet the changes.  And my, there sure have been a lot of twists and turns on this journey so far.  But friends have stood true and strong, I have met some amazing people and heard the most intimate stories.  I am humbled by all the humanity I have met.  And even now, I just opened a birthday present from my friend Kim in NC.  She sent me everything I need to have flowering paper whites in the house this winter.  Isn't that sweet and hopeful and such a special present, especially for my last birthday dying of cancer, flowering bulbs.  So this winter instead of it being dark and cold and dreary, I will have paper whites.  What a lovely journey, and thank you Kim!

And my dad gave me a new phone system.  My old phone could not do an intercom, so it was very hard to hear on it sometimes.  And the volume was not adequate.  The new phone is much louder, and when Dad is here he will be able to use the phone better with his hearing aids because of the intercom.  So another wonderful present.

My world is still so full of presents.  And today, getting to have lunch with Phyllis and then come home to presents and at work this morning I had an opportunity to talk to a fellow co-worker that I have never had a conversation with.  We always say hello, and he seems, and is a really nice guy.  He works in our IT section and he came to upgrade my Adobe to 9.0 and we started talking and I think it did both of us a lot of good.  We are actually sort of in opposite situations, but we could relate and really understand what the other person is going through.  What an intimate thing to share prospective with someone.    To truly understand in a small way their journey.  I think he and I connected and understand each others journey and through that our own journeys more deeply then I have connected in a long time.  Judy and Denise and I connect because of Judy being a 13+ year survivor of cancer.  And Mary has been through this before with a dear beloved who died of cancer.  So Mary connects to me so deeply with both of our hope and desire for a different outcome this time. I willingly accept this journey, wherever it takes me, but part of that peaceful acceptance came from the knowledge that I would be the friend that survived this journey.  And I will, but now we have more information, and it isn't going to be as easy or cut as dry as I thought it would be.  But when is life that predictable.  And as we learn more the journey will twist and turn with the knowledge.  And I have to tell you, before I take my shower, I look from top to bottom and there is no expiration date stamped on me.  So we will have to wait to see where this journey travels, and ultimately does the journey ever really end?  And that is part of the mystery of life, and possibly part of our natural curiosity, and ain't that fun.


  1. Mr. Moon and I were talking about you tonight, dear one, and he said something like, "What an honor to be on this journey with her!"
    Well. I have nothing more to say. Zen Glen said it all.
    Can't wait for your birthday.

  2. Your idea about your birthday is so...sorry to be so Californian...but kick ass. Your spirit kicks ass.

  3. The no expiration date bit cracked me up.

    I have a recycle symbol tattooed on my ankle. I think that's funny.

  4. Kathleen, I hope that you have many more birthdays. I also wish that you would get another opinion as in going to another specialty clinic. I really do. Come up to Hollings cancer center here in Charleston. It is one of the best around. Hope Lodge is just across the street and is a lovely place. At least Google it. I am making an impassioned plea for something that is not my business. But I don't like messing around.

  5. Native/Traditional cultures believe death is "the great advisor". Instead of fearing death, they take the approach of "what can this teach me about my life right now". So anything which brings death to our minds, like the death of a loved one, a serious accident or illness, or any kind of life threatening situation is a time to reflect and an opportunity to make changes/adjustments. It sounds like this is part of your process naturally. I try to at least incorporate this into my life, but being brought up Roman Catholic... it's challenging at best!

    Love you girl and cheering for you body spirit ans soul!
    xoxo m