I’m no angel. In high school I smoked a lot of pot and hash. A straight-A student, who rarely smoked on school days, I felt completely justified getting bake on the weekends. I wasn’t looking for a mellow buzz; I loved getting completely messed up. I had a blast being stoned with my best friend, laughing uncontrollably, and satiating the munchies with hot fudge sundaes and donuts at 4AM.
I partied hard in high school and got it out of my system. I haven’t touched drugs since I was 21. I never felt addicted nor did I have a master plan about being a drug-free person. Feeling totally out of control had been fun, but, gradually, the experience of seeing rooms spin like a carousel and hearing people talk in slow motion felt out of control in a bad way. So I stopped.
I hate feeling drugged even more so now because it amplifies how out of control I feel living with cancer in my body. I chose not to take painkillers after my surgeries, swallowing my pain instead. It took months of convincing by doctors until I finally popped my first xanax. I fear that most medication will make me feel foggy and out of control. Surprisingly, xanax just relaxed me with no fog, no out of control feelings - a welcome experience in the midst of scans and cancer care.
In the ‘Coping With Pain’ section of Everything Changes, I interviewed Dr. Diane Meier, one of top palliative care experts in the country. She talked to me about the most common myths of pain meds. I learned that when pain medications are properly prescribed and managed they can really help relieve suffering.
I’d love an honest conversation about our fears around using pot and narcotics for pain relief, and to hear some positive experiences of how they have been helpful. (I’m not so interested in a conversation about legalizing medical marijuana - I think far too many stoners are using our cancer as their platform for legalizing pot.)
Do you have a fear of prescription narcotics or marijuana? Do you have success stories about working with doctors, nurses, palliative care specialists to relieve your pain through narcotics? Have you used marijuana to ease treatment side effects or pain? What was it like? (Feel free to reply anonymously if you’d prefer.)
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
October 19th, 2009 at 11:57 AM
Once someone explained how pain actually works I was much more open to the fact of using something to get through the experience. I didn’t use too much actually going through treatments etc. it was once everything settled back in that I realized I needed some pharm help - this too is temporary- it’s not forever, but I needed a way to deal with my life a little better and because of the real, physiological changes going on in my body, it wasn’t a matter of ‘positive attitude’ getting me by- There is good and bad with everything.
Now I am working like hell to get off everything, but who knows what my life would be if I didn’t use the help? It’s a personal choice that’s for sure- either way you live with the consequences.
Thanks for the post!
October 19th, 2009 at 12:56 PM
I think the issue depends on the nature of the painkiller and the person taking it. After my diagnosis of testicular cancer (which was brought to my attention by pain), I was prescribed oxycontin. I hated it so much that I preferred suffering through the pain instead of having the feeling of stupidity brought on by the drug. It felt like my brain functions had slowed to a crawl, I couldn’t think clearly, and nothing made sense to me. After that experience with oxy, I cannot understand why -other than the chemical dependency- people get addicted to that crap. Other narcotics (such as vicodin) didn’t have those effects on me, so they were more tolerable.
October 19th, 2009 at 1:55 PM
I never liked using the pain meds cause they only made me more dizzy/lightheaded, but never took away the pain. So I found them frustrating. I’d often be in so much pain, I’d get nauseaus, so I’d up my nauseau meds instead.
Since I had tried a couple with no luck, my nurse practioner asked if I wanted medical marijuana. At first I thought he was joking, but he said that some patients “swear by it”.
Although I never smoked pot or anything, I was curious to try the med. marijuana cause for some reason I thought it’d be more “natural” and have less side effects. my friends wanted me to try the real stuff, but with no immune system, I didnt trust how it was being prepared on the streets.
Anyway, I tried the generic version of Marinol, but didnt realize it was actually synthetic marijuana. so i dont know if the “real” stuff wouldhave been different. But it didnt help the pain, or nausea and just made me more floatey again, so I never used it again.
The best part of it was reading the CVS insert of its side effects. I found it hilarious.. there’s the regular side effect type stuff and then .. feeling “high”, an exaggerated sense of well being (that was my favorite), and how you may hallucinate and if that happens, relax and stay calm.
October 19th, 2009 at 2:18 PM
Hi Kairol,
When my mom was on morphine, she itched like crazy, it may have been the cancer or the morphine. It was hard to watch someone suffering at the end of life. It did finally end and she stopped itching. It was a relief when the end came.
Sorry to be a downer.
Anita
October 19th, 2009 at 3:47 PM
When I was diagnosed I was amazed at the number and sheer variety of people who offered to get me pot.
I’m a big fan of staying ahead of the pain but I was prescribed Dilaudid once and found that I liked it too much. I’m lucky that I learned that early on because that’s the one thing I’ve found that I could easily have gotten addicted to.
October 19th, 2009 at 6:09 PM
Thanks for all of your comments. When I was researching for my book the subject of pain medication, I was really surprised to learn how little some docs know about managing pain medications - even oncologists. If you have a pain management specialist or palliative care doc at your hospital, check them out. They are so great at prescribing pain killers that will work well for you and are not addictive. I think a lot of people hear the word palliative care, think ‘hospice’, and then avoid it like the plague, but in fact palliative care can be one of the greatest access for cancer patients actively receiving treatment and surgery.
October 19th, 2009 at 6:47 PM
My father is a state police trooper on the drug squad and he is so afraid of painkillers that when he got his gallbladder removed he categorically refused pain killers out of fear of being hooked on them. That was some hard core stuff man.
October 19th, 2009 at 10:42 PM
Hey there Kairol,
I was definitely afraid of pain killers during chemotherapy treatment. More so, I was afraid of the steroids. My oncologist told me that there isn’t a very comprehensive understanding of how steroids work and it is often a crap shoot if they will or not. After my first chemo infusion, given with a few steroids, I felt as if my brain was rattling and I couldn’t sleep. I refused all pain management after that. No one explained to me that we could try other meds.
I began to make marijuana food, using marijuana-infused coconut oil to bake with. It worked amazingly! I would eat the food during my chemo infusion and be passed out by the time I got home. A drug’s ability to help me sleep was the key. Like every other food, eventually the taste of marijuana made me nauseous so I couldn’t eat it anymore. Smoking was out the question - anyone taking Bleomycin should not smoke anything for it poses a huge risk of lung infection.
In the home stretch of my 6 month long chemo regimen, I finally consented to try Ativan intravenously. I felt like I had my life back.
Post-treatment, I struggle with extreme anxiety and I’m afraid to take prescription drugs for it. Kairol, how did you come to the decision to try xanax?
Thanks!
October 20th, 2009 at 12:01 AM
I’m glad you posted this as a topic. This has been something that I have been struggling with for years now. As my cancer progresses my life becomes more about pain management. Before I was diagnosed with terminal cancer I was what you would call straight edge, I had no tolerance for people who did drugs or even drank so the thought of me on a narcotic painkiller scared me. Now I accept the fact that I’m going to be on them for the rest of my life. It took me a while to get to that point. My last Oncologist made a point of telling me that the only thing he can do for me was to ease my pain. I got tired of not being able to sleep so I began taking them. Now I don’t feel like a junkie for asking my Dr for them. Don’t get me wrong I would love not to have to use them but now there is no shame in “using” them anymore. I love this blog now that I have found it. I wish I had found it sooner.
October 21st, 2009 at 9:00 AM
Thanks for touching on the topic of pain killers, Kairol! I’m continually amazed at how you seem to read my mind when it comes to the topics you choose.
I’m 25 and have had RA for a year and a half. Although it’s not the same as cancer, during a flare, the pain can get pretty bad. In the beginning, I was quite afraid of pain meds. I was scared I would become addicted and I hated the foggy feeling and not being able to concentrate. But, after learning about pain and that not all pain meds affected me the same way, I discovered how to use them in a way that provided much relief. I also learned the importance of staying on top of the pain with meds. I have a pretty high pain tolerance and used to tough it out until it became too much. I learned that if I stayed on top of it, it was much more managable. I can be pretty subborn sometimes!
I’ve been curious about medical marijuana and would probably give it a try if it became available to me. I would never smoke the stuff straight, but I would seriously consider giving the synthetic stuff a try. It’s good to hear from those who have tried it.
October 21st, 2009 at 10:01 AM
I know this is going to sound silly - but I envy those people who can take pain meds without issues.
I have always been extremely sensitive to meds (allergies to many anti-biotics, hives reactions to other types of meds.) I was on daily Sudafed to deal with sinus issues until one day I realized that the feelings I had meant that I was speeding - so I switched to guifeneisin (aka Mucinex or Robitussin.) I used to joke that if I took Nyquil, I should already be in bed because I would be flat on my butt within minutes. Always have been a cheap date, too - one or two little glasses of wine, a half-beer, one mixed drink and I’m done. Smoked some weed in college - I not only had the hallucinations, I actually wandered off from my friends in the middle of the night and ‘lost time.’
Strokes mess with your brain chemistry, so after mine I became even more sensitive. Now I can maybe take one Tylenol for pain, or one ibuprofen. The year before my recurrence, when I was in excruciating pain similar to sciatica + lower back pain, the docs tried many things: neurontin, Lyrica, ocycontin. There was simply no dose level that didn’t put me directly to sleep. Sleeping through it is one approach, but I couldn’t work like that. Finally the orthopedist suggested that I try Darvon - that old as it is, maybe it would work. Viola - pain control AND I could function.
IV pain meds are also not always my friends; morphine makes me nauseas, and dilaudid given after my colon resection sent me into a non-responsive state that had the docs rushing me to CT to determine if I’d had another stroke.
I’m in pain right now - a lower back pain flare up. Immediately my mind goes to recurrence (that’s what it was last time) even though it probably happened because I twisted or stretched wrong while training one of the dogs. I find myself holding off on taking anything because I don’t want to have to lose a whole day to sleep and the docs are afraid of bleeding/liver damage if I take OTC NSAIDs. So last night I did a little reiki on myself. I did some yoga stretches. I fell asleep on a hot pack after meditating and trying to visualize the pain leaving my body.
Pain meds don’t scare me - but pain does, because there’s so little that I can do beyond alternative approaches, meditation and very rarely, take a low-rent OTC pain reliever, to control it. My docs don’t really want me on either Tylenol or ibuprofen on a regular basis - only when I really can’t handle the pain. So I’m more than a little scared about what they’ll be able to provide to help me with pain control should things ever progress.
October 21st, 2009 at 2:06 PM
Cassie, Thanks for sharing your story. There are a lot of myths about and mismanagement of pain killers. It sounds like you really educated yourself and used the information to your advantage. We look at nightmare media cases of people who become addicted to pain killers and think - oh that’s going to happen to me! And, I’m not saying that addiction to pain killers does not happen. However, if you are being closely monitored by a good doctor, addiction is actually extremely rare and usually occurs in people who have battled with addictions, drug or otherwise, in the past. Glad I read your mind with this post. Kairol
October 22nd, 2009 at 1:03 PM
I have always been afraid of drugs, don’t even like taking advil for headache pain. I never even drank alcohol, and have never been drunk. (hard to believe, I know!) I have never had a high tolerance for pain meds. So needless to say I was pretty scared going into my breast cancer surgery….10 hours to do my mastectomy and reconstruction. After surgery I had a morphine pump for pain which made me pretty sick and I couldn’t wait to come off it. They took me off that to Percocet which I also didn’t tolerate well. I could barely move out of bed…flat on my back with the room spinning. I tried to tolerate more pain in order to be able to just take tylenol. It was worth it to me because the side effects of the others were too much.
As for marijuana, I never tried it but had many people tell me it would help with chemo side effects. Even if it was given to me I would be too scared to use it. Weird right? There I was getting shot up with tons of poison and was scared to try pot.