June 19, 2020

I am still in the hospital. As the Eagles sang, “… you can check out any time you like but you can never leave.”

I really do not know where to start. I bought more data so I can write now because I have no idea when I will be discharged and neither do the doctors. Isn’t that a pleasant thought?

I left you off on June 15th. I had forgotten to say that on that day I had an ultrasound of my heart because my EKG after surgery was not normal. It has been determined that I have a heart issue that may interfere with chemotherapy. I need an additional test but it requires giving me a drug that will make my heart race as though I were running. I have been unwilling to submit to the test because I have been declining physically for days now. Today is the first day since June 15th when I have had any energy at all.

So no one told me that my bowel would remain a problem after surgery and I think it’s because no one thought it would. Well, it has. The stool remains impacted. I have gone from eating regular food to being put back on a liquid diet to going back on regular food. They are using medications to try to resolve the problem – so far unsuccessfully. An abdomen x-ray yesterday confirmed it. After a full week in the hospital (without having been forewarned of this particular outcome), I said I was going to discharge myself yesterday but was persuaded not to do so. I think that was the right call. I am not doing well.

I have been so weak and my iron count so low that they then said I should have a blood transfusion – not required but may make me feel better. Instead, I told them to stop the daily blood draws and let me sleep through the night. As my blood labs have looked good except for the iron, they said OK. The first night, I slept around the clock. Last night, I was in severe pain, all night long, attributable to the impaction. During the days, I am walking the floor 2-4 times for exercise and am otherwise pretty much done for.

But enough about me. Let’s talk about my stoma.

First of all, my stoma has a diameter of a good 2 or more inches. If you haven’t ever seen a stoma, don’t look it up on the Internet. You won’t be able to wipe the image from your mind. It is not pretty. However, my bulbous stoma, as ugly and unapproachable as it may be, is actually saving (or trying to save) my life.

Second of all, my colostomy bag is a stinky bunch of yuck clinging to the outside of my body that is, similarly, saving my life. So I have to give it love. I don’t really have a choice. Cleaning the bag is – well, I changed it myself for the first time yesterday and cleaned it myself for the first time today. It is an unpleasant task. I asked the nurse who assisted if it might give her PTSD but she graciously said “no.” Anyway, it’s mine and it’s permanent and I’ve been told it will get easier. Everything does so I believe them.

I can’t wait to cut my hair. It is too long now and very heavy to wash. I’m going for a little past the shoulders – feminine but lighter.

What else? I’m back on line now so will update you with the latest as it transpires.

Love, Molly2923

One thought on “June 19, 2020

  1. *hugs* Please don’t check yourself out of the hospital. Nothing good can come of it in your current state. I’m of the opinion that the more information you have, the better able you are to make decisions. If it were me, I’d do the heart test. But I also have experience and have had a lot of ugly but necessary testing during my cancer journey.
    It took me awhile to get used to me colostomy, but nearly two years later, having a stoma is no big deal. You never know what can happen if you keep an open mind. Do the blood transfusion – it really will get you feeling better.
    If you need someone to talk to and don’t want to use data, send me an email and I’ll give you my number to text.
    I’m sort of curious, but have they done a CEA blood test yet?


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