504158EF91EAA8A27A35DB2FC810D5BC

Suspended

small shipI feel broken. I don’t know why this latest diagnosis has given me such a hard kick in the head, but it did. I already have metastatic breast cancer and I will die from it. What does another tumor matter at this point? My GP thinks it’s a new primary, but he didn’t sound very sure of himself when he said so. He is a very good family physician, but at this point I know more about breast cancer than he does. I’m waiting to hear from him about the expedited oncology consult, where I should be able to have my questions answered.

But for now I just feel broken. Nauseated. Devoid of energy. I walked on the treadmill for a few minutes and I’ll do that again in a little while. When it cools off outside I’ll go out and sit on the swing. My feelings are not the boss of me.

I feel suspended in a viscous solution. There used to be a commercial on American television for a shampoo. It showed a pearl dropping slowly into the bottle, and not sinking quickly to the bottom. I think it was supposed to give an impression of how thick and luxuriant your hair would feel if you used their product. I feel like the pearl: not floating, not sinking.

It doesn’t feel luxurious and it doesn’t feel safe. When I was a student my group dynamics class went out on a yacht for a weekend group marathon experience that would take place entirely at sea on the other side of Catalina Island. (California, the 1970s. It wasn’t strange for that time and place.) At one point we were all sitting around and the waves were kind of strong. “Close your eyes. Feel yourself being rocked,” the professor said. But I misheard and imagined myself being dropped. It was very unpleasant imagining myself dropping, dropping and not reaching bottom. I feel like that today.

Today or tomorrow I’ll probably hear from my GP with word about the oncology appointment. It will probably mean going back to the woman I fired. I’d rather not see her, but I don’t want to wait for the time it would take to be seen as a new patient by someone else. So I’ll go back to her and follow her lead. If she wants an apology, I’ll apologize. That doesn’t cost anything. At the same time, I’ll have my talking points and questions written out and I will not allow her to deter me from them. I’ll listen to her politely and I’ll insist that she return the favor.

My operational goal for that meeting is to get all the information on this tumor and referrals for all the scans and bloodwork. Depending on how it goes, I may ask her for a referral to a colleague. If we can be polite and respectful with each other, I may not. My personal goal for the meeting is to stay on an even keel emotionally, to be pleasant and professional, to get what I need and not to allow her to belittle me. Eleanor Roosevelt will be my guide: “No one can make you feel inferior without your consent.”

I feel broken this evening, but that is just a feeling and feelings are not the boss of me. I can sit with that feeling for a time without changing who I am. In a little while I can walk on the treadmill some more and after that maybe take a glass of lemonade out in the courtyard. I can take care of myself without being “disloyal” to my feelings. I can feel my feelings without doing violence to myself. I am the captain of my ship; I am the captain of my soul.

 


Image copyright: Oleg Nesinov

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33 Responses

  1. Stephanie says:

    (((Claire)))

    I get the Calfornia reference, having been here since the 50s.

    Keep taking it one breath at a time.

    love, Stephanie

    • Knot Telling says:

      Thanks so much, Stephanie. California in the 70s was one interesting place, for sure.
      I’m breathing, and that’s enough for now.

  2. Colleen says:

    My friend, those of us who love and care about you can actually FEEL your words. Sorry does not seem to adequately convey all that we feel. What I can share with you is that I empathize probably more than most because I was IN your flip flops early last year. Living with metastatic cancer sucks moose cock (as I often say); living with metastatic breast cancer and being told you have a new primary cancer is just plain WRONG on so many levels. It is my prayer that once the ball gets rolling a bit more quickly than your sinking pearl that you will feel you have control–at least a little bit. Having fired my oncologist and being in a bit of a state of limbo right now, the thought of returning to her brings up bile in the back of my throat. However, I know since I have not yet initiated a transfer (due in no small part to the fact my hospital is under the impression that I owe them $120,000 for radiation I had a few months ago) I know that if something comes up, I’ll have to crawl back to her. Apologize? Nope, I don’t think she deserves an apology. I will treat her with respect and expect to have her do the same. Perhaps this is all you can ask of your fired onc? I believe in my heart (and with the self-earned medical degree I earned over these past 8 years) that our cancers are all related and part of the same syndrome. They may not know it–yet–but I find it hard to believe that my luck was sooo bad that I developed two entirely different serious, aggressive cancers all on my very own. I may have sinned in this life, but certainly not THAT bad. They have found a “garbled gene” in my make up, and I think that’s what those of us in these flip flops are dealing with. If we can just keep the pain at bay long enough to figure out how to treat this garbled gene, we may actually get through this nightmare. Sorry, I ramble, but I do hope some of my sharing is of help. Love and strength to you! xoxo

  3. Knot Telling says:

    Your rambling is great to read, Colleen. Thank you.

    You may have been joking, but remember that cancer is not a punishment! It just happened to us. It’s not our fault.

  4. Kathi says:

    Oh, Knot….it’s not enough that you have been told you have a new primary tumor, but then you also have to prepare yourself, gird your loins, to deal with a clinician that you do not like? That is just too much.

    I hope that you can have a respectful interaction with her that results in your getting what you need. Personally, I think that when a patient fires a doctor, the doctor should apologize, endeavor to find out why the patient fired her, and attempt to step up and do better for her patient. And if that means having the patient be seen by someone else, so be it. Any clinical interaction is supposed to be about what the patient needs, not the clinician’s ego. I say this as a clinician who has occasionally been treated very badly or even been ‘fired’ by patients. Sometimes, it’s just a lack of rapport, a lack of interpersonal ‘chemistry.’ Sometimes, it’s a misunderstanding that can be sorted out. Often, it’s because the patient is having a hard time coping or that some need they haven’t been able to express is not being met. It’s the clinician’s job to try to find out what her patient needs and then help her get it.

    I hope you get what you need. And what you need is competence and compassion.

    Much love to you, my friend.

    • Knot Telling says:

      Thanks, Kathi. In this case both she and I were rude, but she was ruder and more out of line (even calling me at home to yell at me in the evening!).

      On the other hand, I had a very, very old fashioned novice mistress so I’m really good at begging pardon no matter how I feel. I’m sure Dr. G isn’t going to make kiss the floor!

      My fear right now is that she won’t take me back and my GP will have to find a new onc for me.

      • Kathi says:

        If she doesn’t take you back that says more about her than you. You never know. Sometimes, you can clear the air & the relationship can improve greatly. Your GP sounds like he would take prompt action in any case. Fingers crossed.

        • Knot Telling says:

          It will be okay, whatever happens. I’ve had too much stress this month to worry over it.

  5. Colleen says:

    Yes, Knot, that was just my sarcasm shining through. I often joke I must have been one bad a$$ kitten torturer in a prior life for the size of this cross I am carrying. When I was told, quite recently, that they had found a reason within my gene sequencing why all of this was happening, it was a bit of a relief. Finally, I had PROOF that it wasn’t my underwire bra, deodorant, wine drinking, weight, lack of guzzling green juices and a myriad of other things that society tries to saddle us with–it was just dumb luck and genetics. Love the way you describe yourself as a very old fashioned novice mistress, that doc won’t know what hit her!

    • Knot Telling says:

      Oh, I wasn’t describing myself; I was talking about my actual Mistress of Novices!

      Yes, it does feel good to have validation, doesn’t it?

  6. Vera says:

    Claire, I pray for peace and reconciliation for you and the oncologist. Sometimes these conflicts can lead to deeper understanding. I think the pearl analogy is brilliant. We need to get used to being the pearl suspended in this world, which is not our home. The only firm ground we have is found in Jesus, and the floating feeling is a reminder that He is our bottom, our firm foundation – all else is dust that will float away. I pray for you to cling to your firm foundation as you walk through this trial, and I’ll be praying for you in your journey. Peace and love, dear sister. Amen.

  7. Melissa B says:

    Prayers coming your way. I have no idea how you are feeling having only been told once that I have cancer, but definitely feel for you. It must be an overwhelming feeling of grief, anger, sadness, and who knows what else all neatly tied in one package. I grieve with you, share in your anger, cry for you. And pray for you.

  8. John Boyd says:

    I can add nothing to the above comments & concerns except to tell you you remain in my thoughts…..more than you are aware. You are one of the most courageous people I know, and, thank god, one of the most spirited. Which, I hope, will help you cope with all these shitty challenges.

  9. Carrie says:

    I do not know about your history with your oncologist but I hope you get the answers you need from her now and are able to either create a new relationship that is mutually beneficial or find someone else you hare happy with. I know a good oncologist that you can trust is important. My oncologist left my hospital and I had to shop around. After meeting a total dud, I found one I think I might love. Time will tell.

    Thinking of you!

    • Knot Telling says:

      Luckily, I just found out I’m getting a new oncologist because the old one only treats breast cancer and this new one is a sarcoma. Here’s hoping!

  10. YAPCaB says:

    Feeling broken is horrible. I felt that way after my initial cancer diagnosis and even more so after the stage IV diagnosis. You’re so right that it’s just a feeling, though. In time it will pass.

  11. Carol Miele says:

    B R O K E N

    by Carol Miele

    I’m broken…

    Like the clock in the hall,

    It stands so straight and tall,

    But chimes twice when it’s one,

    Deep inside the damage is done.

    No matter that its an heirloom,

    Its headed for the trash room.

    I’m broken…

    Like my childhood china doll,

    The victim of an errant ball.

    Once wore a wide-brimmed hat,

    Head shattered by a youthful bat.

    She lies discarded in a heap,

    Destined for a hole six feet deep.

    I’m broken…

    No longer strong in the saddle,

    I’ve been thrust into a battle.

    My invisible scars are all inside,

    Flesh weak, spirit lost its pride.

    Cancer runs pretty deep,

    Can’t shake it off even when asleep.

    I’m broken…

    Incurable illness is a game-changer,

    My life keeps getting stranger.

    I wake at night in a cold sweat,

    To whom do I owe this debt?

    I feel so horribly off-track,

    Desperately want to send it back!

    I’m broken…

    No more wishing and hoping,

    Get on with adjusting and coping.

    Perhaps I could fill in every crack,

    Unlike the doll in the discard sack.

    Get the clock to chime again,

    Live in a peaceful state of Zen.

    Dear Claire…I wrote this poem after my Stage 4 diagnosis. I offer it up for you. Wishing you a peaceful state of Zen.

    B R O K E N

    I’m broken…

    Like the clock in the hall,

    It stands so straight and tall,

    But chimes twice when it’s one,

    Deep inside the damage is done.

    No matter that its an heirloom,

    Its headed for the trash room.

    I’m broken…

    Like my childhood china doll,

    The victim of an errant ball.

    Once wore a wide-brimmed hat,

    Head shattered by a youthful bat.

    She lies discarded in a heap,

    Destined for a hole six feet deep.

    I’m broken…

    No longer strong in the saddle,

    I’ve been thrust into a battle.

    My invisible scars are all inside,

    Flesh weak, spirit lost its pride.

    Cancer runs pretty deep,

    Can’t shake it off even when asleep.

    I’m broken…

    Incurable illness is a game-changer,

    My life keeps getting stranger.

    I wake at night in a cold sweat,

    To whom do I owe this debt?

    I feel so horribly off-track,

    Desperately want to send it back!

    I’m broken…

    No more wishing and hoping,

    Get on with adjusting and coping.

    Perhaps I could fill in every crack,

    Unlike the doll in the discard sack.

    Get the clock to chime again,

    Live in a peaceful state of Zen.

  12. Carol Miele says:

    Sorry for the duplicate copy & paste…it didn’t show the 1st time, so of course, I re-pasted it. Oy!

  13. Maxine D says:

    Tears,for and with you, prayers and gentle cyber {{{{{hugs}}}} – I cannot start to understand your emotional state, not only with the diagnosis, but also with the prospect of having to face’ that woman’ again. I am glad to hear you are going prepared with a (physical) list of questions – I pray they will be addressed.

    I pray these words bring you comfort.

    1. My hope is built on nothing less
    Than Jesus’ blood and righteousness;
    I dare not trust the sweetest frame,
    But wholly lean on Jesus’ name.
    On Christ, the solid Rock, I stand;
    All other ground is sinking sand.

    2. When darkness veils His lovely face,
    I rest on His unchanging grace;
    In every high and stormy gale
    My anchor holds within the veil.
    On Christ, the solid Rock, I stand;
    All other ground is sinking sand.

    3. His oath, His covenant, and blood
    Support me in the whelming flood;
    When every earthly prop gives way,
    He then is all my Hope and Stay.
    On Christ, the solid Rock, I stand;
    All other ground is sinking sand.

    4. When He shall come with trumpet sound,
    Oh, may I then in Him be found,
    Clothed in His righteousness alone,
    Faultless to stand before the throne!
    On Christ, the solid Rock, I stand;
    All other ground is sinking sand.

    Text: 1 Timothy 1:1
    Author: Edward Mote, c. 1834, cento
    Composer: John Stainer, 1873, arr.

    Love and prayers
    Maxine

  14. Kelley says:

    my heart is breaking my friend. I am sad and I am angry that they made you wait so long for such an answer.

    Holding your hand across the ocean x

    • Knot Telling says:

      Look who’s talking about waiting a long time. You and Karl really need to start talking about breaking up!

  15. Beth Gainer says:

    Knot, I hear and feel your words, and I’m so very upset. It is horrible enough to have a new tumor but to deal with a doctor who is less than stellar is awful. You have a good plan to be polite and professional, but apologizing to her is an awful thing to do. But you need to do what you need to do to make sure your health is of primary importance. xoxox

    • Knot Telling says:

      I’m very glad to report that I get a new onc since this is a different kind of cancer. Silver linings – hurray!

  16. (((((((((((((((((((((((Sr. Claire)))))))))))))))))))) dear friend of mine…………i tell you this story to help……….

    When we lost our 18 yr old son in 1998 we were devastated to say the least. I was 3 1/2 yrs in a 12 step fellowship. I RAGED at my HP , i was so angry and upset. HOW CAN YOU DO THIS TO US ????????

    6 months later i called up a friend who was a therapist. I had an appointment on Wednesday. It was Monday. I told her , if you don’t see me today, you’ll read about me Wednesday in the papers. She got me back into that Nutt Hutt i was in 3 1/2 years prior ON SUICIDE WATCH.

    My same 12 step counselor was there too. Old Sara took me outside alone and said the following items: they helped me and i give them to you with all the blessings i can give

    Sara said “Steve in our Program we say there are no BIG things …………….that is NOT true . This is a BIG DAMN DEAL, now let us help you.

    Second she said this: The Good Lord will NEVER give you something you can NOT handle BUT it’s to build character from……………..HOWEVER we are human and you sure as HELL can ask your Higher Power to:

    GO BUILD SOMEONE ELSE’S CHARACTER FOR AWHILE!!!!!!” luv and a special kiss on your cheek while you are on that swing from an old fella in Texas.

    • Knot Telling says:

      Hahaha! It reminds me of that line from “Fiddler on the Roof”: “Master of the Universe, I know that we are your Chosen People. But couldn’t you choose someone else for once?”

  17. I’m so sorry to read about all this, and to know how it’s completely taken the wind out of your sails right now. Thinking of you, take care, and sending hugs too. Yvonne xx

  18. Nora says:

    “I am the captain of my soul”….YES! and what a mighty mighty vessel you sail. <3

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