When the Pain Meds Are (Almost) Worse Than the Pain

Let me say this, first of all: Pain is exhausting. Living with constant pain can sour the sweetest person.

I've been debating this question for about a week now--which is worse, the pain from mets (tumors) in my pelvis and upper leg, or the upset stomach, nausea, and constipation caused by the pain meds.

First, nausea: Last Saturday, while in Vancouver to meet JS, I nearly threw up on the street (chichi Robson Street, if you know Vancouver) as we were walking to a crepe shop. This nausea was the result of taking pain meds on an empty stomach. Not how I had wanted our first date to go.

Thursday night, I came home from a presentation to a Cancer Lifeline support group, ate some fried rice that Older Son had left for me, and promptly threw up in the bathroom sink. Argh. I ate vanilla ice cream instead, and told Older Son the rice was delicious when he asked.

Back to pain: As of last night, I decided the side effects were worse, so I stopped taking my pain meds, oxycodone and naproxen. But this morning, after limping while walking my dog for an hour, and feeling stabbing pain with every step, I'm not so sure.

But let's back up here and fill in some gaps.

The Beginning of Pain
I think the pain started with my first round of chemo, which was almost nine years ago now. My first chemo drug was doxorubicin, which I received weekly for 12 weeks back in 1998-99, after my mastectomy. (See Jeanne's Diary, Chapter 1)

One of the side effects of doxorubicin is aches and pains in the joints and bones. This never entirely went away.

Then, when I had a local recurrence in 1999, I had radiation and more chemo, this time with Taxol. I believe that Taxol also causes this aching in the bones and joints, as well as numb hands and feet.

The numbness gradually went away, the pain never did.

And then of course when my cancer metastasized to my bones, almost six years ago, I had pain. Big Time at the beginning, when a met broke my right arm.

Small time most of the time since then. I live with a certain amount of background pain. Generally, I ignore it.

I don't notice it much any more, in fact when I DO notice it is when it is gone, which happens when I go to Hawaii or Arizona. The warm weather and low humidity are the reason. Sometimes it goes away during the summer in Seattle, but not as dramatically as in Hawaii or Arizona. That's one reason I considered moving to Hawaii, but I can't. My life is in Seattle.

So, fast-forward to the recent past.

I took a four-month break from treatment this summer, the first break I had had in six years. It wasn't totally a break, because I was having monthly blood tests and regular scans, and because my right upper arm, the bone that was broken by a tumor way back in 2001, started hurting Big Time.

Lots of tests and scans, some that seemed to indicate active cancer in that bone, but the final diagnosis was edema, caused by over-use and because the upper arm had been treated with radiation. The radiation had harmed the tissues, even though it had never bothered me till now except for aching sometimes at night or in cold, damp weather, as broken bones typically do.

But the Bone Guy put me on pain meds, including naproxen, which has an anti-inflammatory effect. I think I took these regularly for six or eight weeks.

Eventually, the arm stopped hurting, just in time for something else to start giving me grief.

The Rules for the Break
Many doctors would not agree to let a patient like me, with active metastatic disease, take a break from treatment. But my doctors, Dr. Livingston in Tucson and Dr. Lee in Seattle, are smarter than that.

They were smart enough to see that I was pretty much at the end of my rope, coping-wise, last spring, that too many things, some cancer-related, some not, had piled up, and I was ready to refuse treatment, damn the consequences.

So, Dr. Livingston suggested a break, and Dr. Lee agreed. Thanks, gentlemen.

Except for the problem with my arm, I had a great summer. The best that I can remember. I could eat. Exercise. Stay up late. Drive myself places without worrying about getting home safely. Garden. And enjoy the fruits of my garden. I even cooked dinner regularly, something I haven't done for years. And I advertised for a Canadian husband (still looking, guys).

But during this time, I was having blood tests and scans. The results of these were sometimes contradictory. That's not unusual in cancer treatment. I was willing to live with a certain amount of uncertainty in order to enjoy my break.

So when I saw Dr. Lee a couple of months ago and both my tumor marker, which is a blood test, and my PET scan showed signs of greater cancer activity, we talked about it and decided to WAIT FOR SYMPTOMS.

Now, remember, my cancer cannot be cured. And I've lived with it for a long time. I've (mostly) gotten used to the fact that I have active cancer in my bones, all the time. Ugly little tumors, sitting there. Waiting.

But I live my life in spite of them. Defiantly, in spite of them.

So, we were waiting, and I, ever the optimist, thought this would go on forever. Take a look at my to-do list for the summer if you don't believe me.

Then There Was Pain
Somewhere around the end of August, I think, I started having a sharp pain in my upper left leg and the groin on that side. I noticed it when I kicked Connie's ball for him in the park, so at first I comforted myself with the idea that it might be a soft-tissue injury. But I didn't wait very long. I knew.

So, long story short, I ended up doing three weeks of radiation, which ended yesterday, thank you very much, to treat the mets in my pelvis and upper leg.

And I took lots of pain meds to handle the pain, which was pretty severe.

My radiation oncologist, Dr. Eulau at Swedish, said that the pain should stop at about the end of week two. Unfortunately, that didn't happen. I'm still waiting, and hoping, and telling myself that the pain is better, when in fact it really isn't.

But now I am totally sick of the pain meds. So I plan to e-mail Dr. Eulau and call Dr. Lee and see if one or the other of them can refer me to an acupuncturist who treats cancer patients.

The only down side to this is the paperwork that will probably be involved. I know my health insurance, WSHIP, pays for a certain number of visits to an acupuncturist, but I'm willing to bet WSHIP won't pay for it without a referral from one of my oncologists.

Anyway, that's my solution. Updates to come.

In the meantime, I am eating Malt-o-Meal for my upset tummy and drinking mint tea instead of my beloved coffee. I'm contemplating the idea of walking with a cane. And I'm going to the bathhouse with a friend tonight, to soak and scrub and talk. (See Bathhouse)

Note: If you are a new reader to my blog, please be aware that I do not like people giving me unsolicited advice. So do not e-mail me with suggestions for drugs, treatments, or any other solutions to my problem(s). If you would like to leave a comment about your own cancer, or your own solution to a problem with pain, that is an entirely different thing.

Quacks, and others selling cancer cures, please stay away. Do not post ads for your products or links to your Web sites. I am not interested, and I will take these down immediately.

@ Jeanne Sather 2007.

Comments

[Sara]

Owoo -- I hope the brownies arrive on a day when you can eat them without throwing them back up. It would be a tragedy if you waited all this time for them only to be unable to enjoy them and also risk never being able to like them again, the way nausea can make us feel about even foods we have always loved most. I think they will freeze and unfreeze well, but won't swear to it. In any event, if for some reason you can't enjoy these, I will happily make you another batch some other time.

As for the cane thing...well, this is yet another area where I am A Bad Influence. On my blog, I have frequently recommended carrying a walking stick, at least one of those collapsible ones, around at all times, at least in the car, so that my fellow lower limb amputees and other putatively disabled readers can leave themselves open to adventures without fearing for their footing. I explain that this is a reasonable measure for safety and flexibility, a sensible choice, and really not an imposition. I have chastised myself openly for not doing this myself. But when it's time to leave the house, where's my cane? When I get to a potential Scene of Great Adventure, where's my collapsible walking stick? Where? Where? Oh, right, hanging off the knob of my closet door. Nice.

So, no, you won't get any lectures or advice from me on this score. It's a hard transition to make, from someone who is totally free of body to someone who could use a little mechanical help from time to time to someone who really can't get about without it. I have bounced between these three places, and even with a fake leg still feel like I bounce between them.

Plus I hate carrying extra crap around. (sigh)

Just about the only thing that can make me remember to bring a cane along is if I am in so much pain for one reason or another (like that time I ended up flinging myself onto a hardwood floor because I hadn't locked my wheelchair) that I literally can't walk without it. I really hope you aren't in that much pain today, but if you are, then I wish you speedy relief.

[jeanne]

Sara--dear, dear Sara. If the one about laughter and medicine weren't such a horrible cliche, I would repeat it here.

But laughing at your comments certainly made me feel better. As did the non-advice discussion of the pros and cons of a cane. Thank you for that.

I have fiercely resisted every step downward in my life with cancer, and having a cane seems like such a visible one ... well, you get this, obviously.

And I forgot to say that I ate all the brownies in between bouts of nausea, and they made me feel much better. Didn't share them, either, that's how greedy I was. What a diet--Malt-o-Meal, ice cream (vanilla only), and brownies.

OK. It's raining in Seattle. Gray. A typical fall day. Not cold, but it feels cold because of the damp.

I am sitting in the middle of the living room that I foolishly started painting several days ago, without the energy to paint another wall. Maybe a nap, then the bathhouse.

[Beth]

When my husband found he needed help balancing (lung cancer + bone mets + brain mets), he didn't want an "old person" cane, either. He instead used the high-tech trekking poles he used to hike with - light-weight, collapsible, and very cool-looking at that. Improvise, that's the key!

[jeanne]

Beth--thanks! I was thinking of a fancy carved one, but I like those poles.

Jeanne

[Amy]

Constant pain is depressing. I never lived with cancer but I had a very very very bad bout with my rheum. arthritis and remember buying a pedometer thing because it measured each step I took, and I could look at it at night and feel value....15,000 steps each in pain! Somehow quantifying my efforts satisfied me. Weird.

Love to you. Wish I had something more to offer up.

[jeanne]

Amy--that's great. I really love that. Chart all those steps you took, each one of them painful. That would show you were tough, certainly, and not letting the pain limit you too much. I'd be proud too.

I went to the bathhouse tonight and soaked and scrubbed and ate Korean tofu soup, and now the pain is better. I'm sure catching my friend Laurie up on my horrible week helped, from almost throwing up all over JS on the street in Vancouver to my day of pain and bad mood. We had a lot to talk about while boiling ourselves to a lovely shade of red.

[Amy]

I could send you that pedometer if you'd like! And I'm sorry but I think throwing up on the street is something very youthful, very in-your-20s. I think I drank too much back then. Hope you feel cleansed and aren't too red at the moment!

[HoLy1]

At first my reading of this blog brought out the sympathetic feelings one would expect from a rational human being but the more I read, the more I see a self-consumed, bitter old woman that feels God and humanity has done her an injustice.

What's this crap about health care? If you want health care than go earn it! Why should I as a taxpayer have to pay for your health care? I shouldn't any more than you should pay for my phone bill.

If you want to live in a socialist state than just move to Cuba or Canada and see how good socialized medicine really is.

Look at the parking lot of any American hospital close to the Canadian border.

You'll find large groups of Canadians who will pay cash for American medicine rather than die waiting for the mediocre, slow care provided by Canada's "free" system.

It's unfortunate that people die because of lack of health care. If you were so concerned about health care perhaps you should have made better decisions with your personal life to assure that you could pay the premiums.

Do not ask me to provide you with free medical care because you choose to do stupid things as a young adult, are too cheap to pay your own premiums or aren't forward thinking enough to provide for your later years.

As stated, it's unfortunate that you have a health care crisis. Having terminal illness is absolutely unfortunate. It is not however a legitimate excuse to ask me to pay for your lack of judgment or your being too cheap to invest in your medical future.

[Amorette]

I gave up mentioning pain to my physicians a long time ago. Around the time I was a senior in high school, I came up with some wacky calf pain that didn't have a clear explanation. It'd get unbearable, I'd go to the ER, and then I'd be dragged through the DVT protocol and booted back out the door. The attitude seemed to be that if the cause wasn't what it was SUPPOSED to be, I was wasting their time.

More years later than I'd like to admit, they still haven't come up with a reason for the sometimes-debilitating leg pain. They've arrived at a nebulous diagnosis somewhere around neuropathy. I discontinued all my pain pills(I hate narcotics, they give me the adrenaline-sick sensation of dropping in an elevator too fast)and dismissed the absurdity of lidocaine patches that only numbed my skin (and not well, at that).

Now I just deal with it. It's not optimal, because when you stop talking about it, people tend to assume you're no longer experiencing it. But really, what can anyone do? Easier just to get through it.

I guess.