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Cancer Pain

In the past two months or so, for the first time since I was diagnosed with pancreatic cancer in mid-2017, I live with pain. Until now, I have been incredibly lucky that the only big discomfort I have experienced was during recovery from the Whipple procedure.

Some years BC (before cancer), while I was stuck in bed with the last and worst flu I recall having, my big toe, just one big toe, hurt so badly, so deeply banging away at me, that I imagined finding someone, anyone, who would whack it off with a machete. The amputation, I reasoned in the depths of my fever swamp, couldn't possibly hurt more.

These new pains come with the territory of cancer. I call them body pains and several scatter themselves around my torso and back, rearranged in different places on different days.

As the nurses taught me when I was recovering from the Whipple, alternating acetaminophen with ibuprofen every six or eight hours takes care of pain with a reduced chance of injury to liver or other organs that might occur using only one of the drugs.

Although it takes about two hours to kick in, it works for me. And I don't need it every day. Two or three and, sometimes, four times a week, I'm pain free until evening.

The thing about pain that is not of the pounding, big-toe variety is how wearing it is. It's not that you lie curled in bed whimpering. It's that it grinds you down and after a few hours you feel as exhausted as if you've run a marathon.

Thank the gods for acetaminophen and ibuprofen.

A couple of weeks ago when I mentioned these pains to the oncologist, he did not need to go into a detailed explanation of what was happening to me. I knew I had entered a new, later phase of the disease when he said he could prescribe an opioid for me.

My only experience with that kind of drug was more than half a century ago when I was in my early twenties. After a couple of days of unending abdominal pain that nothing would help, my doctor sent me to the hospital, tests were done and still, no one knew why I hurt so much.

Several medications proved useless so I was then given morphine. It was fascinating. I have no idea what happens to other people but for me, it did nothing for the pain. It did not get anywhere near even taking off the edge.

Instead, I just didn't care. I still recall lying in that bed thinking, “Oh, wow, that is the worst pain I have ever felt. What color is it? I wondered. Does it move from here to there and back? Or does it stay in one place? Is it round or maybe square? If I poke that place, will it hurt more?” And so on.

From time to time, there were some strange-looking pink animals up near the ceiling of my room, but mostly I was fascinated with how much I hurt, feeling only curiosity as though I were studying it in someone else, trying to figure out its properties.

I've forgotten other details but eventually, they took away the morphine, the pain subsided and no one ever knew what was wrong.

When I was caring for my mother when she was dying of liver and breast cancer, she occasionally asked for one of her pain pills. One day she seemed to be in enough pain that I asked if she wanted to try the liquid morphine the doctor had left with us.

“Oh, no,” she said. “I don't want to get addicted.”

Eventually, I convinced that in her condition she was unlikely to run down the block and rob the candy store, and we were able to control her pain until she had a hallucinatory experience and refused to go there again. She died soon after that.

When I had recovered sufficiently from the Whipple surgery, the nurses in the oncology clinic at the medical center taught me how to use the medications I would need to take for the rest of my life and how I needed to eat now that a bunch of my organs had been removed.

At that time, aside from some remaining, minor pain related to the surgery that would soon dissipate, I felt almost like a normal person. But one nurse explained that should there be pain at a future date, the center has an entire department devoted to pain control that I could rely on.

So when the oncologist asked me if I wanted him to prescribe an opioid, I declined. Given my own and my mother's experience, I'll wait until I need it.

I mention all this because when I made the decision three years ago to write about this cancer journey, I promised myself that if I would do it at all, I would always be honest, that I would not omit the hard parts and I would not sugarcoat it.

Sometimes I have a bad pain day. Usually that results when I think, in the morning, that it's not so bad and I can do without the acetaminophen or ibuprofen. Wrong! If it hurts in the morning, it always gets worse. But I'm a slow learner and still sometimes try to get through the day without the drugs. It never works.

Please keep in mind, that this is a report, not a request for advice. What I like about what happens in the comments on this blog is that often, many of you have thoughtful responses that relate to living with the circumstances we are stuck with. I believe that is valuable for all of us and I greatly appreciate it.

Comments

Your detailed reports are useful. At least to me. One day I will gather this blog into a great book of a gracious life. Your insights are better than any best seller. Thank you Ronni

Oh, Ronnie, I dreaded the time I knew would come, when you would be faced with pain. I am so sorry, and I hope you can find some combo of drugs and whatever else helps to make life worthwhile. You have and are providing a great service by documenting your journey. I hope you can continue to do that for a while. Peace be with you.

Ronnie thanks so much for taking us along on your journey, Pain is such a personal experience. I hope you find some relief. You are an amazing and honest person.
Thanks

I have to chuckle at your damn the torpedoes attitude, Ronni - it is so you. My jaws clinch just reading of your pain(s), but if anyone can give you good advice it is your wonderful medical team. Thanks for keeping us in the loop.

A motivational meeting at Pala Mesa Golf and Country Club in Riverside, Calif., in about 1977, ended with me in the emergency room at a hospital in San Diego. One of my big toes was very swollen, red, and extremely painful. I was in my mid twenties, about 27. I thought I had broken it and could not even touch it. I had early onset gout. It could not be cured, but the control that removes the pain almost instantly was the ancient drug Colchicine, made from the autumn crocus. This drug had been around since the Pharoahs and was grandfathered into the FDA. Actual testing was completed in 2009. The drug had been used for thousands of years and controlled gout attacks. It can only be prescribed by a physician after diagnosis. I now take it daily. Pain is tiring and distracting, good luck. B

Why do we always think if we just wait a little bit it might go away? Only recently heard alternating acetaminophen and ibuprofen was a safer way than to just use one. Good to know anyway.

Ronni, hate hearing you are in pain but grateful for your honesty. Oh, that it would disappear like the unexplained pain you experienced 50+ years ago.

You are a treasure. The real kind.

Offering your honesty for us to consider, appreciate and hopefully remember.

My pain has no meds. Yet like you, determination and courage to use it in whatever means possible will be a goal.

Recognize the strong bond you've made here among all of us, as well as choosing and accepting a means of coping, for that is what's more important than the problem or event itself.

Ronni,
Once again you have candidly and bravely brought us along on your journey. Thank you.
I am so grateful for you and your bravery. And I am grateful for the GOOD in your life....your amazing medical team, your throng of caring readers, your internal fortitude and much more,I have no doubt.

You are remarkable, Ronni, and we KNOW it!

Thanks for the advice about alternating acetaminophen with ibuprofen to reduce chance of injury to liver or other organs that might occur using only one of the drugs. I don't take as much as you do, but enough (due to arthritis/old injury pain) to sometimes worry me. So I'm going to try your regimen. I wish you the best.

I am so very sorry and have some idea, so even more sorry. Seconding that Tylenol/Advil mix.

When coping with moderately severe pain, I learned (for me— this is not advice): severe pain is harder to manage than moderate pain, so not to gut it out and let it build to that point before taking medication. Having the big gun pain meds stashed in a drawer was comforting even if I very occasionally needed them.

That you are writing of this is a gift to everyone who has to encounter her own attitudes toward pain, and that of the medical profession.

Did you ever figure out why the big toe was hurting, I get it every so often, and take one of my husbands gout pills, ??? Take care and lots of love in this journey, you have many of us with you... m

Ronni, sending best wishes your way. You have been incredible throughout your journey. This part is the sort I am not looking forward to. I've beaten cancer twice before and am just beginning my newest challenge. If I'm half as brave as you, I will be satisfied. Every now and then my heart flutters in nervousness and I strive to use visualization and deep breathing to maintain control of my fear. I'm with you in spirit as you continue...always.

Duchesse...

That is the other pain lesson the hospital nurses gave me when I was recovering from the Whipple: If you wait until the pain is really, really bad, it will take that much longer for the pain meds to kick in. If you take a dose when the pain is still low, it is easier for the medication to do its job more quickly.

I was told by a gastroenterologist that nsaids/ibuprofen and acetaminophen are far worse for the liver than a simple narcotic like Codeine. Sadly, most people don’t deal well with Codeine but for many it works wonders while still allowing one to think clearly.
The newer artificial opiates, opioids, are terrible drugs and the ones people have trouble with. Imo.
I also have the big toe problem. It’s either gout or pseudo gout.
Pseudo gout is calcium pyrophosphate deposition disease or CPPD and has no uric acid as a symptom.
For me, something like Codeine or Oxycodone only intensified the pain. You can also have CPPD throughout your body like with regular arthritis.
Meanwhile, it has always been odd to me why people are concerned with addiction when they are dying. So what. This country has been brainwashed with anti-opioid hysterical propaganda to the point that researchers actually search for reasons or excuses to avoid pain killers.
Personally, I will take pain killers when necessary. I see no reason to live life in pain if it can be avoided.

Your honesty is such a gift. I understand from my own experience what you said about being a slow learner. When I wake up with a migraine, and decide it's not that bad and I can get through the day without taking any medication, the pain increases and so does my resistance to it. And thank you for saying how pain wears you down. I forget it does that and automatically think I have a character flaw, but fortunately friends reminds me that having pain wears people down. Thank you for this blog, written so articulately and honestly.

For what it's worth: I discovered in my teens--when I had a truly terrible earache that ended with a burst eardrum--that when I quit trying to get away from the pain, and lay very still and tried instead to become it--focusing on just the pain, really diving into it--it suddenly ceased 100% to be pain, and was instead some neutral sensation like heat or weight. That allowed me to go to sleep, and when I woke up, the eardrum had burst so the pain was gone. Over the years I've tried to do this in various situations. I've found that it doesn't seem to work well for me with moderate pain. But if it's really acute, I can just pour myself into it, and it turns it into something else.

I'm so sorry you have to deal with this.

So many times when I read this column, I think ”this will be good to remember in the future.” Yes, if we avoid COVID, we will likely encounter cancer in one form or another. Age is the greatest risk factor for developing cancer. In fact, 60% of people who have cancer are 65 or older. So are 60% of cancer survivors—(American Society of Clinical Oncology).

I view these posts in 2 ways—one is the heroic journey of a stalwart spirit (whom I am rooting for, against all odds). The other way is I think of it is as a message from my very possible future, and how how to cope with illness with true and honest information and grace. Aidawedo said she will gather this blog into a great book. How do we do that?

I was a slow learner about not waiting until the pain got worse. No more. Daily pain really wears a body out. Hugs.

Thank you, Ronni. Yours is my favorite blog and I look forward to the intelligent, well-written, thoughtful, and honest reporting of what's going on in your precious life.

The comments showing different types of pain are very interesting. We all get the pain triggering mechanism but we experience it differently. Pain is so difficult to deal with; it is personal and subjective. I’m sorry you feel pain. Pain can make us refuse to do much of anything until the pain goes away. But you still write your post! You have such a great force of character (I mean it.)

I had terrible knee pains for several years because I could not get knee surgery replacements as the doctor prescribed. I could not because I was the caregiver of my husband with Alzheimer’s. So I took naproxen (Aleve) every morning for about 5 years or more– it did ease the pain. But in January I found out that because I took it for so long I developed acute heart failure and my kidney numbers are up. I wish I had known about your cocktail of pain medicine. It is good that you work with your health team; I hope they will continue to get the right med combination for you so your pain will be easier to bear.

I hate that you are in pain, dealing with it so much. Thank you for the advice about acetaminophen and ibuprophen, that was useful news, which I'd not heard before. As has happened so often before now, your honesty is beneficial to all. Thank you.

Thanks, Ronni! I am glad to hear how you're addressing the pain in your life. I'm often unaware of those little nagging ones...or I suddenly have rib stabbing pain that is supposedly attributed to my COPD and Bronchiectasis - which means frequent coughing. Those pains that are sharp put me in bed curled up. And then a while later I feel just fine and can get up. I wonder who it was that said pain is there to teach us something. I would like to hit him over his head with my skillet. And then ask him what he learned ...!

I have sometimes had an issue with doctors, when they suggest the Next Option On The List, getting them to *skip* that option and move along to the Following Option On The List, because it is so ingrained that first we try OTC-this and then we try OTC-that and then we try Prescription 1 and then Prescription 2 and then Prescription 3, that sometimes when I *already know* that Prescription 2 does nothing, we still have to go through a round of it so I can come back in a month and say "yes, that did nothing [or had unacceptable side-effects], what was the next option?"

Which is all to say: does the doctor or the pain management center have other, weirder (or "works on a smaller subset of the population") medications that would normally only be tried *after* the not-entirely-acceptable-hallucinations medication is being used and is not enough? There are so many frankly strange pain-relief options out there...

We are explorers, going to places we haven't been before.

Sail on, you beautiful explorer. Sail on.

Oh, Ronni.... Good to hear from you, but I am so sorry that you are now dealing with pain. How I wish that we could take that away from you! We are out here listening and caring!

I too had severe toe pain that was diagnosed as gout and daily allopurinol has kept it from recurring, thank goodness. I can't imagine what you must be dealing with, Ronni, but it sounds like you have a good team in your corner. For that we are all grateful.

Decades ago I had a marvelous old-school doctor. He did not believe in coddling anyone and always told you if you were fit to go back to work after he did an in-office procedure, like removing a cyst and putting in a few stitches. He was one who told me, "you gotta keep moving to keep moving."

He also said you had to keep the meds in the body for them to do the trick of keeping the pain away. I saw him when I started suffering with migraines. "Don't wait until the pain gets bad, keep the meds in the body to keep the pain at bay so you can do what you need to do."

He died of cancer over 20 years ago and to this day I miss him and his no-nonsense way of doing medicine.

Thank you! Wish there was something we could do to help.

Thx so much for sharing, Ronni! I am so sorry you are in pain. It makes me feel sad. I appreciate your honesty and openness. It's a road we're all going down.

I "feel you", Ronnie, and I'm so sorry about your increased pain. I have moderately severe arthritis pain in different joints, and I have finally learned that taking a dose of Tylenol 8 hour arthritis pain with my morning coffee keeps it down to a dull roar. My problem with NSAIDS is that they make my stomach bleed and cause pain and nausea, so I try to avoid them. If I really want to be pain-almost-free for a day I take Aleve, but don't take it more than every few months, and always take it with food and antacids.

So there is nothing you can take without some negative consequence, it seems. Figures.

Unlike you, my body seems to really appreciate opiates, so I avoid them like the plague. My brother was an opiate addict for many years, too. But if or when the time comes that I need them I think I'll do ok.

Please don't suffer unnecessarily because of being brave! I hold you in the light, Ronnie.

Perhaps your big toe was gout.
Just thinking out loud.

I have know some people who refused morphine for their pain because of the side effects. My husband was one of them after he tried it. His oncologist started him on fentanyl patches which he tolerated better
I’m allergic to opioids and have no idea what I’ll do if I’m in the kind of pain cancer causes. Fo now I use Tylenol and Aleve for pain.
I know in some states cannabis is used for cancer pain. I know it’s legal in Oregon. Have you researched it, could you write about cannabis for pain in your column?

Ronni, my heart sank when I saw the title 'Cancer Pain' earlier today, but I very much appreciate your candor. Your writing (and many of the comments)... there is much to be learned here, I just wish it wasn't at such personal expense.

I don’t doubt that your random pains are related to pancreatic cancer and I sympathize. But I think that many of us who have reached our late 70s or 80s without cancer (that we know of) also have severe pain that comes and goes and moves around our bodies—sometimes in the back, the feet, the toes, elbows, the head of course. Pain seems to be a partner to old age and I’m not talking just about the arthritis that tortures many of us.

For me, opioids have been life savers for years because OTC pain relievers could never come close to relieving my pain. I have never been tempted to increase my dosage or to OD on opioids even when the pain is greater than the meds can deal with. Nor have I ever experienced any delusions, pink or any other color. All I ever got from opioids was a degree of relief from pain that was not possible without them.

Sometimes I fear that the Media have done a good job of stigmatizing all opioid use and may even have influenced the watchdogs at the DEA to focus unrealistically on use of these drugs even among elders who are unlikely to abuse them. Because few distinctions are made, elders who are suffering from legitimate pain are often treated as if we were addicts who need policing.

Had you heard that if you had walked into a doctor these days with that undiagnosable toe pain, they might have checked you out for COVID-19? At least if you were a young person. Bizarre symptom of what we mistakenly thought was a flu-ish disease.

So sorry you are having pain. And thanks for the tip about alternating acetaminophen and ibuprofen. As my hip arthritis deepens, I'll probably need that.

Be well.

Ronni, your internet friends are here.

Pain.

Interrupted sleep, medication tolerance, choices, Doctor advice, your personal history.

Choices. Decisions.

If pain walked on two legs with breath like the devil's armpit we'd ambush the *%# once and for all.

Eff-off pain!

Your Montreal Fan.

Always.


Thanks, Ronni.

Really? I have terminal cancer and am so grateful to have doctors ready to give any and all opioids.

I never could have imagined when I first encountered your writings years ago that your life would take the turn that it has to result in this most appropriate focus on the evolution of your health status. I’m on this ship, for better or worse, find reading of what you are experiencing informative, but difficult to have to accept as being what has become your reality. This is not at all what I envisioned for these later years, though I expect you didn't either.

So, we come down to considering a basic in life with which we’ve had to cope in one form or another, with more or less frequency, all of our lives — pain. Just seems that with aging, pain in some form takes increasing presence in our consciousness under even the most ordinary circumstances. Once some major issue emerges, as you’ve experienced, pain forces it’s way into our awareness to a greater degree whether or not we like it.

We each seem to readily identify with your pain though in our own way, since some degree of this unwelcome feeling is with us, too. So , it’s only fitting that we aging older adults have come to this discussion about what seems to be a part of all our present lives in minimal to maximum amounts with all that occurs in between. I am certainly no exception to experiencing pain though when we're old, perhaps this is a topic best carefully discussed with others, I think.

I always remember my mother revealing to me some pain she’d had for awhile I hadn’t known about. I said, “I didn’t know you had that pain — why didn't you tell me?” She replied good-naturedly, “If I told you about every little pain I had, you and nobody else would ever want to come and see me again.”

That said, we do need to talk about pain, hear about yours and others as we’re doing here.

I've had idiopathic recurring pancreatitis many time in my life starting in my twenties and I'm 80 now. the pain is so severe that i have to go to the hospital and am admitted for pain relief and treatment. I know it is a different diagnosis than yours, but I feel such admiration and affection for you I hope and pray you will get the pain relief you need. Thank you dear Ronni for being you and sharing your journey with us.

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