For me, I used OTC meds at first and truly didn't want to use narcotics...I'm a "10" on the scale for potential addicts...and using narcotics scared me.

But after 3 weeks, the OTCs were not enough. Plus, they masked fevers, so if I got an infection during chemo (and I did, 2x) it could be dangerous.

After talking with the doctors and nurse practitioners, I started on Oxycodone and then added a Fentynol patch (and then patches) for the pain in my mouth/throat. I guess I was on them for 2 months (long enough to develop a physical dependency). My caregivers were very forthright with the idea of being as pain free as possible during treatment and coached me on my doses.

My wife oversaw my use and we kept charts of when I took what (along with charts for how much fluid and food I took. We always shared them with the doctors and looked for guidance. It’s funny, but now, I cannot remember the pain. I can’t picture it in my mind…it’s like it’s been erased. But I remember waking up multiple times a night and asking (sometimes begging) my wife for an Oxy. So, the pain must have been pretty intense. At the worst of it, I had a full dose Fentynol patch and a half dose Fentynol patch…we tried 2 full doses, but I couldn’t take the way it made me feel and we backed it off to half. At the same time, I was taking 1 Oxy every four hours…if memory serves…it may have been 2  Oxy every four hours…ugh, I hated it.

As the pain decreased, we decreased the Oxy to 1 every four hours, along with the Fentynol. To me, there seemed to be a disconnect between the oncologists and the nurse practitioners when it came to the pain meds.

On a Tuesday, I was in a doctor visit with my wife. We talked to her about pain management and agreed to start trying 1 Oxy every 6 hours…which, to be honest, we were already working toward and would often go 5 or 6 hours between them (but, sometimes not). We showed her our charts (because I really didn’t want to be seen as a drug addict) and she was totally on board with what we had charted.

On Wednesday afternoon, I looked at my pills and realized I didn’t have enough to make it through the weekend and my wife called to have them write a script. I was shocked when they said “that was it. No more Oxy for you!” There was no way I would be able to wean myself off of them…and when I asked about it, I felt like…well, a drug addict. I was legitimately scared out of my mind about how this was going to go. I’ve watched people detox and it is awful. I dreaded my kids seeing me that way. I still cry when I think of it. Wednesday night was, I think, the scariest night of my life. We called the kids together and I explained what was going on and how scared I was and how I didn’t know how my body would take it, etc. We prayed together and hugged and went to bed. I did my best that night to not take as many as I would like, and did ok.

In the morning, I called to speak to the head NP and explain the situation. I could hardly talk yet…I lost my voice in the 3rd week of treatment. But I felt I needed to make my case. She said she would “see what she could do”. Ultimately, she wrote one more script with directions to taper off. I was so glad. I felt safe. I ended up not even using all of the Oxy she prescribed. I was a little lethargic for a few days…the pain got intense at times…but since I was done with chemo, I could go back to OTCs.

I forgot to mention, that all of this time I was also unable to swallow…so all of the meds had to be crushed and mixed with water and put thru my feeding tube with a syringe. Once again, I felt like an addict. To be truthful, I was.

I was still on the two Fentynol patches…and soon we began to talk about getting off them, too. Again, it was scary…but we  had a plan and that brought comfort. First, we cut it down to one full dose patch. Then, we cut it down to the half dose patch. The plan was for two more half dose patches. But I had a great idea. Wouldn’t it be easier if I cut the patch in half and eased off the drugs that way? 

Oh my, apparently, that’s not a good thing to do. Cutting the patch compromised it and could cause it to release too much Fentynol into my system which could cause me to OD. Thankfully, I didn’t. But I did have to endure several lectures from each of my care givers about the dangers of such things.

At that point, my wife and I figured I didn’t need to go back on a full half dose patch…so, we made that my last one.

Again, I was lethargic an had some pain for a while. But I was able to get off the drugs.   

I did not enjoy the effects that narcotics had on me. I hated hallucinating and waking up in the middle of conversation (that I apparently was having with myself). I disliked the zombified state I was in…but realize that I needed it. Suffice to say, that not enjoying it made stopping that much easier for me.

Overall, my suggestions are                                                                                                                                           

1.     If you need them, take them. They are an important part of your healing process.

2.     Keep charts of your usage. It is so easy to screw it up (remembering when you took what is impossible. Your up at all hours of the night and taking so many different meds that you must keep an accurate account of everything you take (antacids, mucous reducers, narcotics, aspirin, Tylenol, the chemo stuff…it’s crazy how much stuff we have to take).

3.     Have open and honest discussions with your caregivers about it. At one point, I told my wife to hide my shotgun, because I knew I wasn’t in my right mind because of the drugs. I wasn’t suicidal and I didn’t mean it that way…I’ve just seen lots of crazy stuff and knew it was the wise thing to do. Again, at this time I couldn’t talk much to express myself…so my wife did what she should do and told the nurses. I had to try to explain myself to them…which, because I couldn’t talk, I couldn’t really do.

4.     Have a plan to taper off. Press your team to discuss it and make sure they take that part of your treatment seriously.

5.   Both narcotics and some OtC meds will cause constipation. This is serious. You must use stool softeners and/or laxatives regularly.

6. Create a support team to help you through that time. Those closest to you are the best members.  I liked the idea of my wife being the one responsible for telling me when I could/could not take them. She stuck to the plan pretty well.