Apr 192017

Sitting in loungerWaiting for hair to grow is like watching paint dry. Why does it take so long???!!! Will it grow faster if I stop watching? Seriously, does it take this long for babies’ hair to grow?

Things are going so well for me right now, I figured I should have at least one complaint. So there it is. Where’s my hair? It’s been six months since I’ve had chemo! Truth be told, I’m actually getting used to my funky, spikey ‘do. But it’s really not me. I much prefer long locks.

In other news…At the beginning of last week, I looked at my calendar and found myself with no doctors’ appointments for an entire two weeks! I can’t remember the last time I even had one week with no appointments. And I managed to make it through the entire week last week without having to pencil someone in.

Ive not been quite so lucky this week. By Tuesday night, I’d already managed to make two doctors’ appointments for this week. One was on Tuesday; the other is on Thursday. More about that later.

Before I started on the Keytruda, the woman who educated me about the drug said I’d have some days when I’d be tired. It happens. But it’s usually just mild fatigue and only lasts for a day or less.

But not too long ago, I had a few really rough days. It was hard for me to get out of bed because it felt like I had a couple hundred extra pounds on my shoulders. And when I was finally able to pull myself up, I felt like I was walking though mud. My brain was foggy, which made it difficult to think. I thought I might be able to walk it off, so I went outside, did one lap around the pool, collapsed in a lounge chair and fell asleep.

Toward the end of the second day, it dawned on me that I could be having narcotic withdrawals. My pain had finally decreased to the point that I’d just stopped taking the oxycodone a day or so before. So I took a dose out of curiosity. And about 20 minutes later I was back to “normal.”

So I decided I was going to have to wean myself off the drug. Last week, I dropped my dose to 1/3 of what I’d been taking So far, so good. This past Monday, I dropped my dose by another 1/3. Almost immediately, I became tired and sluggish. But not quite as bad as I was when I tried to go cold turkey.

My palliative care specialist came to visit on Tuesday, so I asked him about the drug withdrawal. He said I’m trying to wean off too fast and  I should stay on the same dose for two or three weeks before trying to switch to a lower dose.

The doctor also gave me a prescription for a low dose OxyContin pill that I’m supposed to take twice a day. The idea is to keep a steady amount of a lower dose drug in my system and only take the higher dose drug if I actually need it. That way I can get rid of the physical addiction while still controlling any remaining pain or withdrawal symptoms. It seems odd to me to take a new narcotic to get off a narcotic, but the doctor seemed to know what he was talking about, so I decided to give it a try.

So I took the prescription to the pharmacy. They said I needed a prior authorization from my insurance company in order to fill the prescription. Ugh. More bureaucracy. Next, I called the palliative care office to make sure my doctor’s nurse got the necessary paperwork. She wasn’t in, so I had to leave a message. If I don’t hear anything in a couple of days, I’ll call the drug company to find out what’s going on. I may also call the woman who’s in charge of prior authorizations and explain to her why I need the new drug. In the meantime, I upped my oxycodone dose to what I was taking last week. So now I feel “normal” again. Even though I had to slow down, my guess is I’ll be off the drug on my own before my insurance company gets around to approving the OxyContin.

I’ve decided to have my feeding tube removed (that’s the appointment I scheduled for this Thursday). I haven’t used it for anything except for medications since last fall. I can swallow small pills and liquids now. The rest I can crush and mix with applesauce. And I figured there are most likely only two reasons I might ever need the tube again anyway. One is if my esophagus closes up again, in which case my ENT can open it back up. The other is if I’m dying, in which case I don’t want it anyway. We won’t talk about that right now, though. Too many good things are happening.

On Monday, I’ll go for my 8th round of Keytruda, after which my oncologist will schedule a PET scan. More on that later.

That’s all for now. Thanks for sharing my journey with me. Your prayers and support are much appreciated.


YouCaring Account

 Posted by at 9:20 pm

  8 Responses to “Where’s my hair?”

  1. Thanks for the up-date, Totally makes sense on that drug to wean off.
    Prayers are sent every day.

  2. So glad you are doing better Julie!

  3. I think you are great! Bless you for your spirit. You inspire me and so many others. I am a friend of Teresa and I don’t miss when she posts your blog.

  4. I like your spiky hair, I think it is the prefect Florida haircut, heck prefect biker haircut… HUMM… I am so glad that you are now having good days, eating again without a tube and are back to being able to enjoy life. After every thing you have been through have a margarita to celebrate. Cheers.

  5. I agree with everything Gina says! I am glad you are having better days and the hair do is amazing! I maycut mine short again in your honor! Have a couple of margaritas and shots for everything you have been through! Big hugs!

  6. Julie, you are amazing! I am so thankful that you are doing so well! Your blog has been very special. Being able to read it would be so helpful to other patients and families. Perhaps you could write a book?!

    • Thanks, Sheryl! I would write a book, but it would likely be a waste of time. It’s almost impossible to get a publisher or even an agent. And if you self publish, distribution is a nightmare.

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