I have hinted in previous posts that controlling my pain is a big problem. Let me state it clearly here: The scariest, most gigantic problem I face is controlling my cancer pain.
September is Pain Awareness Month. It’s fitting that I am finishing my post on the next-to-last-day of the month. I’ve been working on it all month. That’s one way pain has affected me, by slowing me down. I want to describe my pain, for those who may be curious, and tell you about an organization that advocates for people in pain and their caregivers.
I have learned that even the best oncologists know little about pain control for patients with chronic pain. I believe patients often hope the pain will go away, just as they hope the cancer will go away, and sometimes suffer in silence. One reason I’m writing about pain is the hope that I may encourage other cancer patients to speak up about their pain.
There’s rarely a day when I can hop out of bed and run an errand first thing in the morning. I awake to pain, because my pain medicine only covers 8 hours. I take my morning dose, then stay under the covers, until sitting up or moving my legs doesn’t cause aches. If I’m having a day of high pain, just shifting in bed from my left side to my right side produces a sharp pain, as if someone has kicked me hard in the ribs.
My bone pain hurts the worst. Cancer is in my spine, ribs, pelvis and other bones. The cancer eats away at the bone. I haven’t asked if the cancer creates microscopic cracks, or holes. I don’t really want to envision my cancer that clearly.
Some cancer patients have few painful tumors, or none that are painful. Not me. Pain was my first signal that I had cancer, both in 2008 when I had a tiny lump in my left breast (Stage I) and in 2011 when the cancer had metastasized (that’s Stage IV, the worst).
The cancer in my ribs is very painful, whether I am standing up, which requires my bones to bear weight, or lying down, which puts pressure on the bones. I have cancer elsewhere. The tumors in my lungs aren’t painful, but they cause me to have difficulty breathing, which is painful.
I had radiation on two areas of my spine in December 2014 to reduce the pain. I still have residual, unpleasant side effects from the radiation. My legs tingle painfully from hips to toes if I spend too long on my feet. The sensation is similar to your leg “falling asleep” but it’s a sharp pain, and moving about doesn’t alleviate the pain. The radiation did help the spine pain and I’m grateful. I’m not sure if I would do it again, if I had the chance. I won’t have the chance — bones can’t stand up to radiation more than once.
One of the worst bumps in the road of pain control was learning that my body builds up a tolerance to pain medication, just as it does with antihistamines and other drugs. I can’t predict when this will happen. There is little warning. One day the breakthrough pain becomes worse, and my breakthrough pain dose doesn’t stop the pain. I become disoriented, flushed and above all, I just want the pain to stop. I have learned that this is a sign my body has built up a tolerance to the drug. It’s like withdrawal. I haven’t stopped taking the drug, but my body experiences withdrawal as it craves more and more of the drug. So I suddenly have to battle the cancer pain, and the pain brought on by a growing tolerance to a particular medicine. Both my cancer pain and medication side effects can appear quickly and full-force, without any small aches or manageable side effects as warning. One moment, I’m enjoying a restaurant meal with friends, then suddenly, I break out in a cold sweat, voices become muffled, lights seem to swirl. It’s hard to answer when people ask if I’m ok. I want to say, “I WAS doing just fine.” That’s the peculiar nature of pain relief.
I once made the mistake of stopping a pain medicine abruptly, because my growing tolerance had forced my body into constant aches, chattering teeth, and other side effects I could not endure. I felt like I had the flu for the next 48 hours. I know now that medicine is available to help ease the side effects when my tolerance grows. In addition, stopping a pain medicine suddenly can be dangerous. I made a rash decision, which is common in people on pain medicine who are in distress. Please let my experience teach you, so you do not have to go through what I did. Don’t stop taking your pain medicine without a doctor’s supervision. And don’t make any serious decisions without discussing them with a person you trust.
I’m grateful that strong narcotics are available for my pain, but it’s not an easy ride. I have developed empathy for drug addicts. There is no “high” when the drug works for me. I suspect most drug abusers do not feel high, either. The drug eases their sensation of pain, just as it does for me.
That’s another thing I have learned about pain medicine. I once believed that opiates actually relieved the pain. Not really. Pain is a sensation. The medicine keeps me from awareness of it. It’s kind of like putting your hand in a bowl of ice water. If something disrupts the message from your hand to your brain, you won’t feel the cold, or you won’t feel it as sharply. However, your hand is still in ice water. And your skin may suffer from the effects. Sometimes I wonder if my body suffers from the effects of the cancer that I can’t feel. Like my knowledge of my bone cancer, I prefer to keep my knowledge of pain at a simple level, to discourage needless fretting.
After years of searching, I now have a pain doctor who helps me tremendously, at my city’s Hospice and Palliative Care center. The center isn’t just for people in their last days. The Palliative Care division treats patients with chronic, terminal diseases. I meet with my pain doctor every month or two, and information about my care flows between all of my doctors.
A few months ago, I was interviewed for a story in Pain Pathways magazine, and through that I found out about the U.S. Pain Foundation. The group serves as an advocate not just for patients but for caregivers, too.
There are many ways to treat pain, and the foundation is a useful resource for people who may be frustrated by uncontrollable pain. The worst pain is often best treated with several methods, not just one. The foundation’s website is a great place to get started. http://www.uspainfoundation.org
It was a relief for me to discover that there was a group that actually cared about my pain.
It’s important for cancer patients and others in pain to have national-level advocates. There are many issues that need attention. For example, our country has a serious problem with prescription drug abuse. Sometimes, laws designed to curb addiction actually make life harder for patients with chronic pain. For example, no one is allowed to pick up my narcotic prescription but me. That’s a good law, but what if I’m too sick to leave the house?
The U.S. Pain Foundation educates lawmakers and other interested groups about patients in pain.
In addition to the website, the organization’s outreach includes support groups, and Twitter chats with pain professionals.
I was so happy to learn about the pain foundation that I have become an ambassador for the foundation. I especially want to help cancer patients learn about pain control, BEFORE they need it. If you know someone undergoing treatment for cancer, would you let them know about the U.S. Pain Foundation? It’s something he or she may not need now, but it’s good for everyone to know help is available when it’s needed.