Oct 022015

Cancer suppliesBecause of the location of my tumor, my surgeon was unable to do my feeding tube surgery laparascopically, so I woke up on Tuesday afternoon in a lot of pain. They gave me IV morphine every two hours for the duration of my hospital stay.

At around midnight on Tuesday night/Wednesday morning, I was feeling warm, so I called the nurse. She came in and checked my temperature. It was 102.1, so she called the doctor. Even though I had been telling all of my doctors since Friday I had been aspirating, he seemed surprised I had a fever and said to my nurse, “I think maybe she’s been aspirating.”

Thankfully, I had a fabulous nurse that night. She got me an IV antibiotic and some Tylenol for my fever. She also came by about every half hour to see if I needed anything and she showed up with my pain medication without my having to ask.

They managed to get me out of the hospital on Wednesday in time for me to go to my radiation therapy appointment. As I was waiting to be called back, a woman sitting close to me kept eyeing me nervously. She finally asked how many treatments I had already had (she was waiting for her first). I told her I was getting ready to have my 19th but not to worry. The reason I looked so awful was that I had just had surgery. I keep hoping I’ll run into her again so she can see that I don’t always look like death.

I’ve been doing a pretty good job with the tube feedings, but I’ve had to cut way back on how much they want me to take in for now because I still have a lot of swelling and some of the formula keeps leaking back out of the tube.

I’ve spent the better part of my week trying to get my meds switched over to liquids or pills that can be crushed and trying to figure out where to get the formula they want me to use (Jevity). It has a lot less sugar and a lot more fiber than the Ensure. I finally found it for a reasonable price on Amazon (go figure).

The home health nurse came today. She was nice, but not real helpful. She was unable to answer most of my questions and she changed my bandage without showing me how to do it. Good thing I used to be a nurse.

My throat pain has almost disappeared, but I still have pain at my incision site. I had all of my pain pretty much under control between the fentanyl patch, the Hydrocodone the surgeon gave me, and ibuprofen, but I haven’t been able to find a substitute for my acid reflux medicine yet, and the ibuprofen really aggravates it. I called my PCP yesterday and he called in a liquid proton pump inhibitor (like Prilosec), but they wanted $234 for it after insurance. So I called again trying to get something else and he never called back.

The home health nurse called my PCP again this morning and he said I needed to call my insurance company and find out what he can prescribe that I can afford. She made the phone call for me. I heard her talking about some kind of powder that needed a prior authorization. When she got off the phone, I told her that was probably going to be expensive, too, and asked if she couldn’t just find me a pill I could crush. Instead of actually doing that, she said, “Let’s just wait and see if your insurance company will approve this one.”

This afternoon at my radiation therapy appointment, the nurse said they were going to give me next Friday off. The doctor is going to make some adjustments that will shrink the area of radiation from there on out (I’ll be down to my last two weeks by then). I assume that’s good news. The doctor told me yesterday he was pretty sure the radiation was going to kill this tumor, but they were concerned the cancer would come back somewhere else (I guess that’s what the chemo’s for). I’ll have to talk to the oncologist about that later. First things first.

After radiation therapy, I went to CVS to pick up a couple of prescriptions. I showed the pharmacist my Nexium prescription and asked her if there was something comparable I could crush that wouldn’t cost me an arm and a leg. She said to try Pepcid or Zantac. I called my PCP for a prescription, which is cheaper than buying it over the counter. No response yet, so I picked up some OTC Pepcid.

I think if I can get something that will help with the acid reflux, my pain will be well enough under control for me to finish my radiation therapy. Round 3 of chemo is next week.

 Posted by at 10:59 pm

  15 Responses to “One doozy of a week”

  1. Nice of you to not worry the woman about to start treatment.

  2. Maybe you can make up for it by planning a boozy week come spring! I am heartened by your posts, and truly believe that you are going to be just fine. Praying for your comfort until then.

  3. Your in my thoughts and prayers!

  4. You are in my prayers Julie. You seem to be a very strong woman!

    Acid reflux has been a big problem for me, but have prescription to help me now

    Wishing each day is better for you!


  5. You are an amazinging woman. Stay strong!
    Sharon and Gary

  6. Okay first stay strong snd just keep thinking this is a book in the making. (It will sell as more and more people are being infected with this need for Chemo and radiation). Second try some peppermint oil for your acid reflux. I take it for my heart burn, I know two different things but peppermint oil will not cause more harm like all those other pills. And it might help without side effects like the prescriptions and helps with fresh breath.

    And most importantly, just keep putting one foot in front of the other. This is a long life changing journey and it and you will never be the same afterwards. Remember you are loved by many you bring joy and love to people there fore people love you. LOVE YOU!

  7. Gaviscon(OTC) has to be crushed to take(you usually do it in your mouth, but you can do it another way.) Might help wtth the reflux.

    Most of us sometime in our life wonder how strong we are. At the end of this you will know how strong.

    I wish I had words to help you, but I’m not sure what they would be. At tough times, imagine I am holding your hand, and squeeze. I’ll squeeze back.

  8. Hang in there! It sounds really difficult but you are coping with it well.


  9. Thanks for the updates I was glad to see the Dr gave you something with less sugar in it. But still have other goodies in it for you. Still in my prayers.

  10. Julie, I know that treatment for each type of cancer is different, but let me tell you of my experience. In March and April I was hospitalized for bleeding ulcers and heavy acid reflux (which I had for sometime). During that time the Drs found that I had cancer of the esophagus. They told me chemo or radiation would not be effective. Options: surgery (removal of esophagus or meds), I opted for surgery They put port for feeding tube and for pain (which I think they said would be for the epidural, not sure). All I know is that it helped, cuz I had minimal pain. There are options . Trying to find the right one is difficult. I pray for a positive outcome for you.

  11. I am hurting with you.

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