The fullness of time

It is so easy to lose yourself when you are sick. In the beginning, you are two beings, you and your illness. Together but separate. Independent.   Slowly, you bleed together. And then one day you are contained in this diseased vessel and everything is harder and you can’t get out. Every choice you make, every tiny decision, matters. Everything has consequences.

I have been mulling my GI surgery for several weeks. This is such a nuanced situation. Each solution has its own consequences. None of the options are benign. I always made my health decisions right away. Whatever my gut feeling is, that is my decision. Then I spend a few weeks justifying it to myself and making myself feel better about it. It’s sort of a weird quirk of mine.

That didn’t happen this time. I think about it all day, every day. It makes everything else seem more difficult, this looming decision and impending consequences of my choice.

I am terrified that I will choose wrong and the consequences will harm me. I’m also terrified that what I didn’t choose could have helped a lot. It is hard to know, especially for someone like me, with multiple unusual conditions, and big dreams. I count my big dreams as one of my conditions, something that must be accounted for. I have to be able to live with my choice.

After much research and discussion with my relevant specialists, I have decided on a surgical option. I am having some tests repeated in a couple of weeks, but they are merely to confirm what I already know. Almost exactly two years after I had my colostomy placed, I will be having the entirety of my colon removed save for a little bit of salvageable rectum. My small intestine will be connected directly to the rectal tissue and my ostomy will be reversed. If this fails, I will have a permanent ileostomy and accompanying nutrition problems for life, made worse by the fact that I can’t eat many of the foods used to mitigate this issue.

In the fullness of time, all your choices either fade into the ether or are absorbed into your being.   If I choose wrong, it will become a part of me or become insignificant. Nothing is absolute. These choices become part of the constellation of our lives and you can follow the stars all the way through the story.

I wish everything wasn’t so hard right now. I feel like I am in the middle of a raging storm, the kind you get in New England summers, when the humidity is too much and the sky unleashes it. I’m standing in the downpour, lightning whipping and thunder crashing around me. It is awesome and terrifying. It feels like change.

And I’m scared. But I’m still here.

6 Responses

  1. Bob Haven February 26, 2015 / 2:10 am

    Prayers for you Lisa… Keep us updated on what you decide to do and how your doing.

  2. Michele Palley February 26, 2015 / 2:41 am

    You are such a wise lady so I’m sure you have had multiple opinions? If not…might be good to do first since its such a big decision. But either way…I wish you peace and a speedy recovery along with feeling so much better once healed. Big hugs.

  3. Emmi Dack February 26, 2015 / 7:51 am

    I can sympathise with the turmoils of decisions about surgery. I am currently seeing a mast cell specialist in the UK. I have had a tryptase test, which was normal, and as I do not have urticaria pigmentosa he feels I do not have systemic mast cell disease. To rule out a problem with oesinophils, I am now doing a weight and temperature chart and need to get my blood checked as soon as I start swelling – that might be tricky if it’s a weekend or evening! I have a long history of food and multiple chemical sensitivities and GI problems.
    I have a clinical diagnosis of Cowden’s syndrome, which predisposes those affected to develop benign /malignant tumours. There is an associated high breast cancer lifetime risk for women of 85%, and I did develop a high grade breast tumour and then went on to have pre-cancer of the uterus. Following my last surgery, I was told to avoid histamine-releasing drugs as I had a reaction during surgery. I had a very difficult recovery and had brain MRIs as I developed some weird migrainous/visual problems. The thought of future surgery is scary, especially as it might be looming on the horizon.
    Recently, there was a research article which discussed a case of systemic mastocytosis in the context of Cowden’s:http://www.ncbi.nlm.nih.gov/pubmed/25059215#. Unfortunately, I had to pay patient access for a copy and cannot pass it on. I have noticed that there are several members of the Cowden’s FB groups who have food/chemical sensitivities, and some are on a mast cell stabilser drug.

  4. Mark Beckwith February 26, 2015 / 8:53 am

    Dear Lisa, you are so bold. Take our encouragement with you as you step into the unknown. We love you.

  5. Traci February 26, 2015 / 11:43 am

    Hugs and prayers going out to you!!!

  6. liz February 26, 2015 / 3:02 pm

    Prayers for you Lisa!!! We are all thinking of you!

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