Aug 142016

ChemotherapyI got out of the hospital last Saturday, the same day my stepson and two of my grandkids got into town. While in the hospital, I got my first round of chemo. Now I have what I call “chemo brain,” so if something in this post looks awkward, we’ll just blame it on that.

We did manage to go to the beach once and out to dinner a few times while we had company. i also took time out to go to the social security office. When I finally got to talk to someone, she told me I couldn’t make more than $1130 per month (net) or she’d have to drop my claim. And that includes money I earned in July. Regardless of when you file, it takes six months to get any money anyway.

When I got home, I realized I was already over the $1130 limit for August (for work I had done in July), so I called the social security office and asked to speak to a supervisor. She said if I could prove I had earned the money in July, they could go ahead and file my application. It took some time, but I dug up the invoices and any e-mails proving when the work was turned in and sent them to the woman who’s working on my case. I also sent her copies of the e-mails I’d sent to my clients telling them I couldn’t meet deadlines anymore so I was going to have to quit. So far, I haven’t heard anything back yet. I’ll try to call again on Monday.

On Wednesday, my stepson left and on Thursday, his ex came in with another of our grandchildren. I went to see my oncologist while John picked them up from the airport. My throat had been hurting a little more than usual for the past few days (I still haven’t recovered from the last throat surgery in May and the 35 radiation treatments to my neck last fall). I also had a sore on my tongue. The oncologist said I had chemotherapy-induced mucositis. She gave me a new prescription for magic mouthwash and a recipe for a salt and baking soda rinse to use after meals. She also gave me my chemo schedule. I’m scheduled for five more rounds (three days in a row for each round through November). I assume we’re still going to check after round two to see if it’s working before we continue, but I’ll make sure we have that discussion soon.

When I woke up on Friday, I felt like my throat was on fire. I had to have someone bring me my pain medications before I could even get out of bed. I told my husband I needed to go to the emergency room (so I could get some help before the weekend). So we all piled in the car and went to the ER in Melbourne.

After consulting with my oncologist (they were unable to reach my pain management specialist), the ER doctor sent me home with two 12 mcg/hr. fentanyl patches along with the hydrocodone and ibuprofen. That helped some, but I was also having a hard time eating so I just had soup and watermelon for lunch and dinner.

Later that evening, I was pretty sure I was running a fever, so I got out my thermometer and checked. It was 102. Not good. My company brought me some cool washcloths and my scheduled medications and we got it down to 100.4.

I woke up in the morning with a temperature of 102 again, so I called my oncologist’s answering service. We were able to get my fever down again, but she wanted me to be admitted to the hospital in Orlando. So here I sit. I’m waiting for them to get my temp down yet again so they can give me a pint of blood. In the meantime, they gave me acetaminophen; I made sure I was allowed to have that with the hydrocodone because the hydrocodone contains acetaminophen and you’re only allowed a certain amount each day or it can cause liver failure. I also got a cool washcloth. They wanted to give me an ice pack, but I already had chills, so I said no.

They’re also going to do swallow studies on me while I’m here to see if I’m swallowing what I’m eating (or if it’s going into my lungs). I’m not really sure I want to go through the whole feeding tube fiasco again. And my living will says no, so if I’m unable to make the decision, they won’t put one in. I’ll have to have a serious talk with my oncologist if it comes down to that.

That’s it for now. Thanks for reading my blog. If  you’d like to help me with my battle with cancer, please go to

 Posted by at 2:38 am

  6 Responses to “And the hits keep coming”

  1. Damn Jewels things just are not going good for you. It seems every time you get a break you take anther step back. I wish there was something I could do for you but say prayers. I hope this is just a minor step back and that you will be home soon.
    Love you

  2. Big hugs, Julie. Sorry you are having to deal with this. Love you.

  3. Like Gina and Tracy said I am so sorry you r going through this mess! If I could take it all away I would. Big hugs to you. Love you so much. Renee

  4. Julie, we are all on the sorry wagon but we are all helpless. You are being so strong. I am amazed that you are able to write your blog so objectively. Sharing the details of your journey, at the very least, gives people a personal idea of the struggle cancer causes. It’s one thing to hear that someone has cancer and they need chemo and radiation…but it is impersonal until they hear the day to day facts and consequences. You are on our minds and we pray for you.

  5. Julie, you have to be one of the most amazing women I know. The magic mouthwash worked for me but the baking soda and salt solution irritated my throat more so I only used it a couple of times. I hope they find the reason of your fevers soon. Most of all, I hope you find relief from your pain. Chemo brain sucks but please make sure that you keep track of your dosing of prescribed and otc medications. It’s so easy to forget that you took a dose and take another. I hope the fentanyl patches work for your pain, I found I slept a lot while using them. It’s difficult to respond because I want to say to you that everything will be okay and that I will pray for you and I wish those things with all my heart, but then there’s the reality that I am facing similar issues but not to the extent you are. Your blog is an inspiration to me and I wished I would of done the same thing. I hope my rambling has made sense and I really hope they can find the source of the fever quickly. Best of luck on the eating study and I hope you will not have to make the decision whether you want to go the feeding tube route again. I would love to talk to you some time and maybe when you get out you could give me a call (502) 797-6139. I realize most of the time you’re not going to want to talk but if there is a time please call. Wishing you a pain free future and I am praying for your continued strength!

  6. […] I mentioned in my last blog post, I was admitted to the hospital for a persistent fever on August 13. They put me in an isolation […]

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