Thursday, November 14, 2013

"Take a breath.....Hold it.....Breathe Out...."

You all probably recognize the title as what a CT machine says to you  in a sing-song way when you are laying there on the scanner, warmth wearing off the blankets,  curly cue cord of the IV in your arm ready for contrast to be pushed into you remotely.

I finally got frustrated at my endless night of sleep, listened to my family, and called my doctor a few days ago, telling him I was not able to wake up.  When I made the call, I had gotten out of bed, struggled to the dining table, and was breathless, which his wonderful assistant could hear over the phone.  I told her my big problem was fatigue but she seemed concerned about the breathlessness and hey, at the time, I was really breathless, she was right.  My body had been in bed for more than a week straight, moving and talking on the phone was a struggle, and I had to pause between every word to get air.

Naturally,  they called me into the oncology office to get my blood checked.  Anemia made the most sense. Getting there was a hard task with my exhaustion, particularly getting dressed. Fortunately, my son has not started his new job yet and was able to drive me.   I was afraid I couldn't stay awake on the road, and I felt too weak to drive myself.  When my blood came back as being non-anemic, even in the ranges of you normal people, the doctor scratched his head and sent me off for a chest X-Ray.

Okay, he wasn't actually there so I didn't see him scratch, I'm just assuming.

That X-Ray also came out normal.

I was willing to leave it there. I'm feeling a bit better, awake more; I was up for hours yesterday, and although I have been availing myself of ritalin - it is working unlike before.  I got up at a normal time today, much to my cat's dismay. I'm still lacking in energy in an extreme way, and I feel weak,  but am not sleeping all day. Then his assistant called and left a message, saying the doctor wanted a scan.

In my head, I was thinking maybe a PET so I was okay with that.  To be honest, if anything is wrong with me cancer-wise, it seems like it would be my brain going wonky and wanting to sleep, and I thought maybe a PET would show brain mets.  I was not thinking lung, and I still am not.

But just now, I got the call for the appointment and it is for a chest CT.  With contrast.

This makes maybe my 50th scan and that is not an exaggeration, nor an exact count.  It could even be more considering all the surgeries, radiation, etc, that I've had them for.

I am just not sure I can do another one.  I just ..... can't. They aren't scary or hurtful and they don't make me nervous or anything.  But I'm tired of this.  I'm sick of being in machines.  I'm sick of having to dress, get in the car, go wait in a waiting room, change, get on a machine, little poke, take a breath, hold it, breathe out, okay, here comes the contrast you might feel warmth down there, breathe in hold it breathe out, okay you are done, drink lots of water and no caffeine, get dressed, drive back home........how many times is one woman expected to do this?

Maybe cancer has moved into my lungs.  Or brain.  Maybe I just had some virus.  I'm getting up again, still tired but not sleeping all day.  Maybe it was just a "thing."  Maybe, imaginatively, my body is practicing to die, maybe, practically, the infusions are affecting me, maybe ....maybe.... I don't know.  But I do know that whatever it is, I cannot do one. more. test.  The doctor hasn't seen me.   I am tired of being doctored by machine.   I don't want to do this and I feel like a 3 year old stamping her feet.  I CAN'T DO THIS AGAIN!!!!!

I called and talked to my doctor's assistant, told her I was better and didn't feel like I wanted to do a CT, and said unless the doctor had a good reason for it, I was going to cancel my appointment.  She said she'd ask him and let me know.  She did, he said that he'd only ordered it in case the chest x-ray missed something, I know my body best, and so the CT is cancelled.

The lesson for me is:  DO NOT CALL MY DOCTOR if I feel sick but am not in danger of imminent death. My problem was sleeping, and it got translated into breathlessness, which is understandable because that's what they could hear, but then I was going down the wrong road.

Which barely matters, because all roads lead one place:  machines.   And, right now, I am so over CT machines.  So so over them....

Breathe Out........




Oh, and you are welcome insurance company, I just saved you $7,000.00.

20 comments:

  1. I am glad that you feel better. You've been on my mind.

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  2. i think that isnt the lesson. calling the doc is ok as long as you exercise the right to use your own judgment with respect to his recommendations. they aren't doctor's "orders" but you 've already figured that out the hard way. so please call the doc when you are miserable. there might be an easy fix to that particular issue.

    better yet, do what you want. you've earned it

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    1. Yeah, I think that the lesson FOR ME is not to call. I need to trust my body and sick as I felt and feel, I never felt like it was dangerous. Sometimes, you don't know though, I didn't think c-diff was either

      For everybody reading this, use your own judgment not mine. :)

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  3. So I'm just some guy somewhere in Africa reading your blog ... unlikely to get breast cancer any time soon ... just thought I'd tell you how much I'm learning. Thanks. I am sorry. I love you.

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  4. You are so wise - I think you are right to trust yourself, whether the decision is to blog or not blog, call the doctor or not call the doctor, get the CT or not, etc.

    I am somewhat cheered that at least your kitty is happy that you are so sleepy, but for your sake I really, really hope this is a phase and you get back some of your energy soon.

    -best from MN

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  5. i like the way you said, no thanks, to the CT Scan. As the grandmom of a sweet baby boy with cancer, we don't feel we can...it's crazy. we can't take any chances. it's like: since he can't speak for himself, we have to everything we possibly can, and just...trust. I wish we didn't have to inflict all that machinery on him, just don't think it would be quite right not to, if they say to. you know? Anyway, long story short, I'm just glad you said NO. seems very appropriate, and yes, being doctored by machines is kinda crazy makin

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  6. I have learned so much from reading your blog (just started a month ago but have been reading through your archives). Thank you for sharing so generously what you think and feel.

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  7. You.Are.One.Tough.Cookie....and I so admire you.

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  8. Just letting you know - thinking of you
    Roberta

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  9. I'm hoping it was just a deep, healing sleep that you needed. It might work better, though, to know that ahead of time and you could just snuggle in and let it happen instead of wondering if you'll never wake up. It would be nice if this disease would just follow some rules. XOX

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  10. Hi Ann,
    After reading your last post I've been thinking about you lots, so I'm glad to hear you're feeling a little better. It's always about self-advocating. You know your body best.

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  11. You. Are. Awesome. Just sayin... xx

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  12. I will be thinking of you a lot. I remember "stamped my feet" but being tired of it all is...... Just tired, and it all seems to much. Its ok to say no, I think.

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  13. Ann, maybe your body was just saying it needed extra rest for a while. Sometimes how our bodies react seems so unpredictable.
    When I was going through radiation for spine recurrence, I happened to have a real bad headache one day. I also happened to have an appointment with the radiation oncologist. They always ask about pain, so I mentioned the headache. I had to talk him out of ordering a brain scan on the spot. When I went in for treatment the next day, the technicians had been given orders to ask about my headache. I am positive that if I had still had it, I would have been getting that brain scan.
    With our doctors reactions, is it any wonder that we patients wonder about every new possible symptom.
    Elizabeth J.

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  14. Ann, this is my first visit to your blog. I just watched your Soul Pancake video. You are a beautiful woman. Thank you for sharing your story. So much of this is perspective and keeping that perspective about what is truly important in life. My first diagnosis with breast cancer, all I could think about was my two-year-old and being there while he grew up. He's 16 now. I pray you make your son's graduation and beyond.

    Peace be with you.

    Margaret Lesh

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  15. You Make Me Wanna Be Brave <3

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  16. This comment has been removed by a blog administrator.

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  17. Wendy,
    Ann has been fighting stage 4 for several years now and tried many many different treatments. It is good that you are in remission (you never know if cancer is gone for good with stage 4). If you go back through her older blogs and read them, you will be hard put to find someone who has fought harder or been more positive.

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    1. Wendy was a spammer, constantly posting the same link with the same ungrammatical story. Sorry age got by me.

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    2. People like Wendy should stay away from blogs like this. And you have indeed fought hard and been positive. But, ultimately, the gift of modern medicine is still a very incomplete and unpredictable miracle. Praying for you to feel better and more awake. (If I could, I would share some of the insomnia my meds give me - just enough for you to be a little more awake and for me to get a decent nights sleep). God bless.
      Elizabeth J.

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