Apr 012017

Light Bulb (Idea)I’m happy to report that things have been going really well for me lately. I’ve got LOTS of good news, so I’ll start with all of that: 

  • My pain has decreased to the point that I was able to take the fentanyl patch off a few weeks ago. My pain specialist said it was okay for me to start taking ibuprofen again, so that and the hydrodocone have been all I’ve needed to control my pain. I don’t have to take the hydrocodone around the clock anymore, either, so I’m hoping to be able to get off that soon, as well.
  • I feel great! With the patch off, my brain hasn’t been so fuzzy and my energy seems to be returning. I’m to the point that I want to go out and start enjoying life again.
  • My sodium is under control. I’m down to 15 mg of Samsca every third day. That should give me enough medication to last until around the end of May. Hopefully, by that time, I won’t need it at all anymore. But if I do, I’ll go back to the hospital and hope the drug company gives me enough to finish out the summer.
  • I’m able to eat again. It’s still difficult and some things are harder to get down than others, but eating has become much less painful. And I’m able to eat most things if given enough time. I even had steak when we went out to celebrate my husband’s birthday! The ENT said I’d most likely need more surgeries to keep my esophagus open, but he also said it could be a year or more between procedures. I can live with that.
  • I started walking again. I’m up to about 20 minutes a day, but am pretty sure I’ll be able to up that to 30 before long. I’m not going very fast, but my goals right now are to improve my muscle tone and increase my energy level. I’ll worry about cardio once I feel stable again.

With all that good news, I have just a few minor complaints:

  • I’ve been having a little trouble swallowing, in general lately, even though I can eat. My ENT said it’s because the radiation therapy damaged some of my salivary glands. And it may get worse because radiation therapy continues to do damage years after the fact. There’s no way to fix the problem, but avoiding dry foods could help. As of now, it’s nothing I can’t deal with.
  • My hot flashes are also back (all day every day). One minute I’ll be freezing and the next minute I’m on fire. I talked to my OB/GYN about it, and as I suspected, I may not be a good candidate for hormone replacement therapy because of the increased risk for more cancer (no, thank you). I’m going to ask my oncologist what he thinks, but I may just decide to tough it out.

All in all, I’m pretty happy right now with how things are going. But in the back of my mind I’ve been worrying some about the fact that my tumors have grown, even though the oncologist told me that would happen while I was on the Keytruda until after treatment #6. He never said why, and I never thought to ask, so it didn’t make sense to me.

When my pain specialist was here a few of weeks ago, I mentioned this to him while we were talking about how things were going. He said since Keytruda is an immunotherapy agent, it triggers a normal immune response in that when it attacks the cancer cells, it causes them to swell (AHA!). It’s just like when you cut yourself and the site swells before it begins to heal. So now it all makes sense!

Even though I’m not quite as worried as I was before, I’ll feel much better when I hear there’s been a substantial decrease in the size of my tumors (or that there are no tumors at all), and that the cancer hasn’t spread. My next scan will be after treatment #8 (sometime around the end of April).

That’s all I’ve got for now. Thanks for reading my blog. Your prayers and support are much appreciated.

YouCaring Account

 Posted by at 10:01 pm

  11 Responses to “My AHA! moment”

  1. Great news, Julie! Teresa keeps us posted on your health but this is far the best report ever. The good far outweighs the bad … Keep it up!
    Here’s rooting for you, girl.


  2. This is all great news, well most of it anyway. I am really glad to hear the energy is coming back, also that you are able to eat. Steak, heck that can be a challenge to chew for anyone. Anyway great news and I am very happy for you.

  3. Oh Julie, fantastic news!!! Prayers answered!!! I am so glad you are feeling like getting out and doing more. I keep up with your progress, but so glad to read it in print!!! Yipee!!!!! 🙂

  4. Julie…I am so happy you are starting to feel better…look at you…before long you will be able to do a longer workout!! Will keep the prayers up. Hugs and kisses!!

  5. Oh and for hot flashes, red clover or black cohosh.

  6. I’m so happy for you. ❤️❤️❤️ Love you!!

  7. So happy for all the good news!
    Love you! Big hugs!

  8. So happy to hear your good news, Julie! will keep praying those tumors shrink til they’re all gone! It’s your time to celebrate!!!

  9. Julie:

    I am friends with Vicky and Shauna and have seen some of your posts. I found this blog and spend all of last evening reading about your journey. I am very sorry that you are having to go through this. Your courage and determination are very inspiring.

    I am glad to read that maybe the new drug is helping! Fingers crossed!

    However, I was quite dismayed to read about all of the inefficiencies (I could use saltier language!) in navigating the health care system. You should be using your energy to focus on healing and not dealing with the quagmire of providers, insurance companies and pharmaceutical companies. I will keep you in my prayers for sure and am sending positive thoughts and healing blogs your way!

    All the best,

    • Thanks, Susan! I guess you don’t remember me, but I worked with you at the AAFP. Hope things are going well for you.


      • Hi Julie:

        Of course, I remember you from AAFP and some of our crazy trips to New Orleans and San Diego. What I meant was that I read your posts via Shauna’s and Vicky’s (Sharon’s) posts on FB. That’s how I found out what’s going on with you. I figured that if I just signed “Susan” you might not know who I was.

        Take good care!

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