The Assertive Cancer Patient

Broken Bones

So this is really fun.

I FINALLY had a phone conversation with Dr. Lee about my scans from November 5 and 8 yesterday (I had called him earlier in the week, but he hadn't gotten back to me). And, it turns out, I had a fracture in the pelvis, the pubic bone, actually, in the area where the met was that I had radiated in September.

This fracture had not shown up on the bone scan I had before treatment started, but it explains why the pain didn't stop after I began radiation, as my radiation oncologist had told me it would. It also explains why the pain continued for so long--more than two months, including the three weeks I was undergoing radiation.

Now I am kicking myself for being so stoic about the pain.

Dumb, dumb, dumb.

It is true that I told my doctors, every time I saw them, that the groin area still hurt. But maybe I didn't make it clear how much it still hurt.

I wondered if there was something going on there, other than irritated soft tissues, that was making it hurt. That's why I was glad to have the bone scan and PET/CT earlier this month.

And it was those scans that showed that I have a healing fracture in that area. I also have a broken rib or two, which only really started hurting this week, but boy did/do they hurt. That's the pain I was dealing with yesterday.

So I'll be back at the radiation oncologist's on Monday, doing a set-up for yet another round of radiation, this time to the broken rib. I'm also getting an MRI early Monday morning to look at the tumors in my spine, at T-5 anf T-6 to make sure they aren't big enough to do me any harm.

Then, there is the Tykerb battle. My Tykerb is now lost in the bowels of the computers at Medco's specialty pharmacy. Until the computer spits it out, I can't schedule delivery. But I can't call and schedule delivery. The call has to come from Medco. Go figure.

Because of the Pain
Because of the pain, I canceled my birthday lunch with my friend Jill. Well, rescheduled, really. Jill and I both have metastatic breast cancer, and our birthdays are two days apart, so for the past three years, we've been having lunch on November 16, the day between our two birthdays, to celebrate the great ages we are living to, despite having metastatic disease.

We joke that we are the only two women in Seattle who celebrate getting older. And we do.

But this put a crimp in things. I knew I couldn't comfortably sit for an hour at a restaurant, plus I've been busy setting up all my appts. for next week and trying to wrassle the Tykerb folks.

Also canceled my scrub at the women's bathhouse tonight. I don't want anyone putting that much pressure on any part of my body right now. But if I can make it to 5:30 in one piece (relatively, anyway), I will still go along and soak. That will feel good.

Read: Inside a Women's Bathhouse

@ Jeanne Sather 2007.

Pain, Pain, Painful Pain

So this is why I blog.

Because with the blog, I have friends who check in with me when I don't post anything new for a few days, as was the case this past week.

In answering their questions about how I am, I see the answers more clearly.

I've been in quite a bit of pain for weeks now. Some is the pain in my groin left over from the last advance from the cancer side--the mets in my pelvis and upper left leg that were radiated in September.

Dr. Eulau, radiation oncologist, who I saw this week for a follow-up, agrees that the pain is "just" soft tissue pain, and I should carry on with the massage, exercise, icing, and so on. And pain meds when necessary.

The problem there is that the pain meds upset my stomach, to the point that I sometimes throw up after taking them, as I did the other night. Not fun. But I made it to the sink, at least.

I had decided not to see an accupuncturist, because I didn't want to add another medical appt. to my already full weekly schedule of doctor's visits. I may revisit that decision. There is an accupuncturist two blocks from my house, although it's not the one I was referred to, and that might be doable. And I already have the prescription in hand.

The point here is that pain is exhausting. And I'm still anemic from the last round of radiation, so between the two I have only about six hours of good energy a day. That's not enough.

The plan for today is to exercise, gently, especially back stretches, because my back is killing me, and that's not cancer pain. Then a sauna, for further stretching. Followed by ice to all the places that hurt. Also will take some pain meds on a full stomach (just had a peanut-butter milkshake, all organic ingredients, and hormone-free milk, of course), and see if I can have a better day.

Thanks to Amorette for the e-mail in which she said:

Any doctor who uses "just" and "pain" in the same sentence hasn't had a very hard life.

When I get caught up, I'm going to write a profile of Amorette, who has lived with cancer all her life, and who is also a bento* artist. How cool is that?

* Bento: Japanese box lunch. These are works of art in themselves, in the presentation of the food inside the box, but Amorette goes a step or two or three further. Stay tuned.

@ Jeanne Sather 2007.

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.

Pain

As a few of my readers have pointed out, I've been so busy lately that I haven't had time to write about the end of my break from treatment. Too busy living my life and blogging about really important topics, like Canadian men, to write about what is happening on the cancer front.

Well, today, I was blindsided by uncontrollable pain, and pretty much had to cancel my day and go to bed. The same thing happened one day last week when I forgot to take my pain meds.

During my four-month break from treatment, my medical oncologist, Dr. Lee, and I decided to watch my tumor markers (rising) and test results (mixed) and wait for symptoms before starting chemo again.

This was fine for me, because I so desperately wanted that break. And I got it. My physical energy is back. My emotional and mental energy are good. My hair is thick again and my skin has lost that greenish tone it used to have in the mornings. Greenish skin with lavender lips--that was my morning look.

But several weeks ago, the first symptom appeared--pain in the pelvis where I have a couple of mets (tumors in the bone. These are breast cancer tumors that have spread, or metastasized, to the bone).

So Dr. Lee referred me back to the radiation oncologist who treated me last December, and also gave me a prescription for pain meds.

I went to see Dr. Eulau, who is at Swedish Hospital, and had some scans and set-up appointments and began a series of 14 radiation therapy treatments to my pelvis and the very top of my left leg. Today was treatment No. 5.

The pain should decrease at about treatment No. 10, Dr. Eulau says. I hope so. I'll be in Vancouver this weekend, meeting the most promising candidate of all the men (and one woman) who answered my personal ad for a Canadian husband.

Anyway, the trick to controlling the pain is to stay on top of it. I have two pain drugs, Naproxen and Oxycodone, which I take every four hours.

If I go to sleep at night without taking my meds, as I did last week, or run out of one of them, as I did today, then the pain gets ahead of me and it REALLY HURTS. Taking pain meds once you are in a lot of pain doesn't do that much good--taking them regularly regardless of the level of pain is the way to keep it under control.

I know this, but I goofed, and I paid for it today.

I went in for my radiation therapy at about noon, saw my doctor briefly to chat and get new prescriptions, then went to the drugstore in so much pain my eyes were crossing. While I waited for the prescriptions I went downstairs to Whole Foods and picked up some sushi for lunch.

Then came home, canceled a phone interview with a reporter and also canceled my writing workshop for tonight. Took my pills and plopped an ice pack on the sore spot and went to sleep.

After four hours of sleep, I feel like a human being again.

Lesson learned.

Note: If you are new to my blog, you may not realize that I am extremely sensitive about people giving me unwanted advice. Please do not e-mail me suggesting different pain remedies or ways of coping with pain. I especially dislike it when people try to sell their products on my blog--those messages will be deleted immediately.

Words of sympathy and support are gratefully accepted. You are also welcome to tell your personal stories about cancer and pain.

Questions I Hate: Pain

Copyright @ Jeanne Sather 2007.

Depressing Monday

I'm trying to fend off a depression that began yesterday ... the rain isn't helping, nor is the fact that I'm in pain.

Yesterday I had a pretty active morning: walked Connie, wrote some blog posts, did some inside house projects because of the rain, which kept me from painting outside as I had planned. Then the depression hit and I made some comfort food and retired to bed (clean sheets, yummy) with the book Victoria's Daughters.

Comfort Food

A digression. My friend Sara asked for "food porn," a term I love, and I've been slow to get back to her. (See Food Porn.)

Yesterday, when I could feel a depression coming, I headed to my backyard "garden in the sky" and harvested a few red-skinned potatoes (classic comfort food). I also snagged a zucchini and a red-skinned onion.

I wanted to make a vegetable curry with this, but the fridge yielded no jar of curry paste. No Japanese curry in the cupboard either, or curry powder on the spice rack (I threw away old or suspect spices a few months ago while cleaning the kitchen, and haven't replaced them--a serious oversight).

I had to make do with a packaged sauce meant for pad Thai.

Cooked the potatoes in the microwave for a few minutes. Then added them to the zucchini and onions in the wok. Once these were sizzling nicely, I added leftover rice from the fridge, and then at the end the pad Thai sauce. It wasn't curry, but it was yummy and plenty spicy, and I topped it with mango chutney for good measure.

Took this dish to bed with the book (and the dogs) and stayed there all night and till almost 10 this morning, reading about Queen Victoria and her five remarkable daughters. (She also had four sons, and ultimately 40 grandchildren, who all seemingly married each other.)

This family history makes World War I incredibly personal. It was, for these folks, essentially a family feud. Fascinating reading.

Back to the Depression
But this morning I am still depressed. It probably didn't help to read about the death of Vicky, Queen V's oldest daughter, of breast cancer at the turn of the (20th) century. Be warned that this is coming if you are thinking of reading the book.

So I'm gently trying to push myself out of this mood, which again isn't helped by rain and dark skies. I have much more energy on sunny days.

It's also not helped by pain in my groin. I think it's just a soft-tissue thing: a pulled muscle or ligament from kicking Connie's ball for him. But it hurts. And I have a couple of mets in that area, so I can't help but worry.

Also, after my blood test last week I got a call to come back to have the test repeated: My blood calcium was too high. So I'm going in for that this afternoon. The nurse was vague about what high blood calcium means, but I think I already know: disease progression.

I see my oncologist on Friday, and for once I am not in a hurry to get the news. I'm expecting that he will tell me my break from treatment needs to come to an end. Sigh. I'd like another month or two, and I may try to wrangle that if he doesn't think it's too dangerous.

So I'm going to walk Connie, who is whining, and then try to get myself together. I think I'll go buy a Ken doll or two on my way to the blood draw. (See Prostate Cancer Ken.)

Buy the book:

Victoria's Daughters

@ Jeanne Sather 2007.

No Break for Me

Wasn't it John Lennon who wrote, "Life is what happens when you're busy making other plans"?

It may not have been Lennon who wrote those words, but they describe my life during the past couple of months all too well.

Anemia. Meltdowns. A doctor who fired me. A second cancer, melanoma. Problems with my younger son. Ongoing problems in the treatment room at my cancer center.

By the time I went to visit Dr. Livingston in Tucson back in mid-May, I was ready to refuse treatment, and just let things float for awhile. Because, as with so many people living with cancer, my problems were caused by the TREATMENT, not the cancer.

Dr. Livingston rode to my rescue, I thought, when he suggested that I could safely take several months off from treatment (Herceptin, Avastin, and oral Cytoxan, plus various drugs to control the side effects of treatment), as long as I was closely monitored by my new oncologist in Seattle.

I was dancing off the walls with joy. And of course I blogged about it.

A Break From Treatment

A Cancer-Free Month

Then, just a week or so ago, my right arm started hurting, and I began to wonder if I was going to get that break from treatment that I so desperately wanted, after all.

The Break That Wasn’t (Maybe)

After waffling for a few days, I bravely called Dr. Lee and admitted that my arm really did hurt, and it was getting worse, not better. So he scheduled me for an MRI yesterday morning, and between that time and my appointment today to get the results, I played "what if."

I figured that even if there was another tumor in my arm, we could treat it with radiation (a drag, because you have to go in every day. But I'm an old hand at radiation, I've done it three times now). And I could make a case for staying off the chemo for awhile longer, as long as my tumor markers stayed down.

Then I'd have a reasonable summer, even if I was tied to the cancer center by a 24-hour leash.

I also fantasized that I had just exaggerated the pain and there was really nothing very seriously wrong. Haven't I had enough? More than my share?

That, however, is not an argument that works with the cancer gods.

The answer, once I saw Dr. Lee, was weirder than I could have imagined. He showed me the MRIs, explained, and said, "I really have no idea what is going on."

Oh, boy. Not good.

The MRI shows edema, or swelling, in the MARROW of the upper arm bone, the entire length of the bone. And a couple of suspicious spots that might be cancer, but don't look like the other tumors I've had in my bones.

So. We looked at each other. I asked a few distracting questions about what I was looking at on the scan while I got my breath back. Dr. Lee suggested maybe a biopsy of the bone, but that's apparently a surgical procedure.

I could see where this was heading, and I wasn't liking it.

We talked a bit more and decided that I should have all the other scans (the ones I had so blithely scheduled for early July when I was planning to have a month off from cancer) ASAP. They are all scheduled for next Monday--one long day of scans. PET/CT and lots more MRIs.

He also wants me to see another doctor, one I know because I've written about him and his patients. A big guy in the bone cancer world. Waiting for the phone call about that appointment.

And of course I've e-mailed Dr. L in Tucson and asked him to check in with Dr. Lee.

So that's what's happening.

Note: If you are new to my blog, you may not realize that I am extremely sensitive about people giving me unwanted advice. Please do not e-mail me advice. I am not looking for medical advice.

Also, please be careful with the platitudes. Don't tell me you are sure everything will be fine. You don't know that and neither do I.

Messages of support and friendship are gratefully accepted.

@ Jeanne Sather 2007.

The Break That Wasn’t (Maybe)

Sitting here on my comfy couch on Sunday morning, 9 a.m., coffee cup not quite within arm’s reach (I need to rearrange the furniture), rubbing my aching arm and thinking about pain.

This is my upper right arm, where the bone was broken by a 5-centimeter tumor at the time my cancer metastasized back in 2001. That’s how we first discovered the metastasis—I was walking around with a broken arm.

Ever since, my arm has ached, mildly, a good part of the time. More in the winter when it’s cold and damp. I joke about rheumatism: Imagining myself as an elderly farmer in overalls sitting in a rocker on the porch, spitting chewing tobacco and complaining about my rheumatism when it’s going to rain.

Last weekend, I helped my friend Monica pull weeds and tidy up her front garden, and since then it has REALLY hurt. I talked to my doctor about it on Wednesday, and we agreed that if the pain got worse, I would call him and we would move up all the scans I have scheduled for early July.

So now it’s hurting more than ever, and I think I have to call him on Monday and get this checked out. Argh. (Don’t want to. Would like to think it’s all in my head. But I know better.)

I have a lot of questions: How could cancer come back in an area that has been treated with radiation? I check the little tattoos on my arm that mark the field, and realize that a tumor could be outside the area that was treated, closer to my shoulder.

I’m trying to decide how much it really hurts. And the answer seems to be that it hurts as much as it did the time it broke. But of course, people don’t remember pain very well.

And I’m very aware that by focusing on it, I can make it seem to hurt more, so I’m trying to distract myself.

But it hurts. [Expletive deleted here.]

And I REALLY wanted that break from treatment, which it looks like I may not get. I REALLY REALLY wanted it.

Onward and upward. I’m going to go out and patrol my garden. Pick a few strawberries, stomp a few snails.

@ Jeanne Sather 2007.

When Friends Die

My good friend Gudrun in Germany, who often puts translations of my posts on her site www.bcaction.de, is grieving the loss of a close friend from metastatic breast cancer.

Here is what Gudrun wrote on her site:

On May 29, 2007, our friend Conny died as a result of breast cancer, seven years after she was first diagnosed. Conny was only 51 years old. She is survived by her 26-year-old son.

During her last days, Conny had to endure unimaginable pain. Just when she wasn’t able to fight for herself so well anymore and became in need of help like never before, she was not given enough morphine, and the medical care system showed deep rifts. We are very sad.

In several e-mails, Gudrun told me more about Conny’s last days, and how upset she was that Conny’s doctor cut the amount of morphine and Valium she was receiving from her usual doses, so that Conny was in terrible pain the final days of her life.

Conny’s cancer metastasized to her brain about two months ago, Gudrun wrote, “and the medical support in this time was horrible. The last four weeks I was at her side every day and it was a big struggle and no help anywhere.”

Gudrun begged the doctors and nurses to give her friend enough morphine, but they brushed her off, and the doctor left the hospital the day before Conny died without giving the necessary orders.

“I spoke with the doctors: ‘She is a dying person, please gave her more morphine …’ Gudrun said.

"’She won't die, give me time until Thursday,’ the doctor said. At that time she had 22 hours to live. I explained everything, again and again. ‘I understand,’ the doctor said. And he went home, without leaving instructions to give her more.

“Then we fought with the nursing staff. 'The doctor didn't leave a message. Your explanations don't interest,' they told me."

The next morning, Gudrun received a phone call at 8 a.m. telling her that Conny was dying. Gudrun and Conny’s son and the son’s girlfriend were with her when she died.

"There was nothing of 'humane medicine,'" Gudrun says. "There was not ONE word from her oncologist. For him I wrote a special poem. It's very angry.”

Now Gudrun is trying to help Conny’s son and his girlfriend find a new place to live. “They are alone and they have done ALL THE BEST for Conny,” she says.

And Gudrun’s own grief is overwhelming. “I loved Conny as my twin,” she writes. "I have been crying since May 9. … Her son is my son at the moment.”

I am so sad for Gudrun. And I am so angry for Conny. No one should have to die in that kind of pain.

Morphine eases pain, doesn't shorten life

@ Jeanne Sather 2007.

Questions I Hate: Pain

Pain.

“On a scale of one to 10, with 10 being the worse pain you have ever felt, how bad is the pain?”

This question always annoys me, because the truth is, it is impossible to compare pain A with pain B, at least for me. It is also impossible to truly remember pain.

So, for example, I remember that the birth of my younger son (the older one is adopted) was probably the worst pain I have ever experienced. But I don’t really remember the pain. I just remember that it was excruciatingly painful.

I am not making this up. Human beings do not remember pain. (Read more.)

So why do they ask us to?

I get the “pain question” fairly often because I live with pain. My pain is caused by the bone mets (tumors in my bones, where my cancer spread from its original site in my breast. A medical note: these tumors are not bone cancer, they are breast cancer tumors that have metastasized).

I also have pain as a lingering after-effect of all of the chemotherapy that I have had, or so my doctors tell me.

The trick for me, and for my doctors, is to distinguish pain that means something (i.e., cancer progression, danger of a fracture) from my routine, garden-variety, background pain. And of course, I can have pain for other reasons, like arthritis in my neck, that is not significant, at least not significant as far as my cancer treatment is concerned.

Twice now in my life with cancer, I have had significant pain and not realized that it meant a tumor had broken a bone. Partly, I think, I didn't realize because I have a high pain tolerance. And partly, perhaps, because it is just so hard to tell.

Yes, it hurt, yes, it really hurt, but I didn’t realize that what I was feeling was a broken bone. Broken by a tumor.

The first time, my upper right arm was broken by a 5-centimeter tumor at the time my cancer first metastasized to the bone. I knew that it hurt, but I thought it was a soft-tissue injury.

The second time, just a few months ago, I had a broken rib and didn’t realize it. Again, I knew I was in pain, but I thought the pain was caused by exercise. I had been paddling regularly with a dragon boat team, and I had a lot of new aches and pains as a result, especially in my back and neck.

We didn’t find the broken rib until after it had already healed, when it showed up on one of my routine scans. My oncologist said it could have broken as a result of paddling, or all on its own. Argh.

So now, since the thought of walking around with undetected fractures gives me the willies, I am especially vigilant about checking out new pain.

This lead to an (emotionally) painful comedy of errors with the doctor I saw briefly (a total of two visits) at the Seattle Cancer Care Alliance after Dr. Livingston left for Tucson and before I changed cancer centers (more on that to come).

I told the doctor that I had new pain and tingling down my right arm that seemed to be coming from my neck, which also was hurting, and I had pain in my back. Since I know I have several tumors in my spine, I wanted to make sure things were OK.

Without going into all the weird twists and turns of the conversation, the doctor told me three or four times, “I can’t scan you every month,” and sent me off to see a psychiatrist, because she was convinced that I was there to see her because I was anxious over the departure of Dr. Livingston.

Well, yes, I was anxious, but more anxious at that point about not having a doctor who would LISTEN to me than about the fact that Dr. L had left.

Cut to the chase: When I changed doctors, and told my new doctor about my symptoms, she sent me for MRIs.

These showed that the tumor in T-11 in my spine was bulging out of the bone and moving toward the spinal cord. So I did a series of 14 radiation therapy treatments to my spine to take care of this.

I shudder to think how long it would have been before the Doctor Who Doesn’t Listen would have noticed this one. Would it have been in time to prevent me from being paralyzed? (Fill in expletive of your choice here.)

Obviously, it is important to be able to describe pain. And, as I mentioned, the old 1-to-10, “Ten being the worst pain you have ever felt” scale doesn’t work for me.

So I am proposing a new pain scale. I could use some help filling it in, so please e-mail me your suggestions.

10 Rolling-on-the-floor, screaming, can’t-think-of-anything-else pain; e.g., childbirth

9 Impossible-to-ignore pain; e.g., a broken arm or leg

8

7

6 Keeps-you-awake-at-night, can-ignore-during-the-day pain; e.g., Jeanne's typical bone pain

5 Throbbing, constant pain; e.g. bad tooth ache

4 Only-notice-when-I (fill in the blank) pain

3

2

1 Hangnail pain

The scale may not need ten steps. I’m not sure I can describe pain in ten different ways, and having ten steps is pretty arbitrary anyway. Send me your suggestions, the funnier the better.

Here's a final one: Only hurts when I laugh. Is that a 2 or a 3?

@ Jeanne Sather 2007