The pain, the pain!

Isn't that a phrase from Bugs Bunny or something: "The pain, the pain!" Or maybe I'm thinking of "Da plane! Da plane!" from Fantasy Island. Last night was bad. After my brother and his family had visited, I fell asleep on the couch, and, as before when I was temporarily not taking the NSAID, when I awoke the upper-back pain was so intense that moving upstairs and getting into bed was a huge production. The pain from the surgery adds to the problem, but the pain and pressure in my spine and ribs is worse than anything I've ever experienced. I don't like to take codeine at night, though; I have sleep apnea and I don't need something else that makes me stop breathing, plus once I get settled into bed, I usually sleep pretty well. It's getting there that's murder.

I got smart this time and brought a glass of water and my Tylenol 3s upstairs with me, and took a couple before I even got out of bed this morning. Still doing a little screaming unless I lie down. But when I lie down, eventually the other part of the back pain kicks in -- a big, hard knot in my left shoulder blade that burns and itches along with the pain.

So I just took an NSAID, bruising be damned, and I hope it will be effective. This has been going on for months, and the doctors are being very vague. Because of all the hardware in my spine, they can't get a really good picture, and they're talking about bone metastasis but also possible bone thinning caused by the cancer-prevention drug I've been taking, resulting in microfractures. Or both.

I wanna take a shower! I look like hell. Rosemary is coming over soon; her work involves giving gentle movement sessions (with a focus on laughter and fun) for women who've just had breast surgery, to help them regain range of motion in the arm and prevent lymphedema. So I'll be in good hands for my first attempt at exercise today. The hospital sent me home with exactly nothing in the way of post-surgery instructions [UPDATE: THE SURGEON'S NURSE DID GIVE ME A BOOKLET ON EXERCISE, AMONG OTHERS, BEFORE THE SURGERY, AND I SHOVED THEM ALL IN A CORNER AND FAILED TO NOTICE THE EXERCISE INSTRUCTIONS TILL NINE DAYS AFTER THE OPERATION], but I think I may have the stuff I got five years ago, complete with exercise diagrams. The home-care nurse is coming today to look at the dressing and the drain, which I've been draining myself.

What would I do without drugs? I've always been a reluctant drug-taker; most of the pain I've had in my life hasn't been very amenable to painkillers in any case, but I also tend not to want to kill pain that I don't understand or know the cause of -- I want to be able to feel and report what my body is telling me. But this pain has become intolerable. And yet -- what if the cause of the pain is the cancer-prevention drug I've been taking for three years?

Pollyanna moment: After I got home from the hospital with Robin, I decided to take a nap, and went out like a light for two hours. When I woke up, I thought, "Funny the phone hasn't rung." Then Robin and I realized the phone had been off the hook, and a damn good thing, too; otherwise, we wouldn't have got a nap at all. I should do that more often (though I really appreciated all the kind phone messages). I felt lousy when I woke up, and discovered I had a temperature of 100.5 degrees. It was 4:45 p.m. on a Friday, but I thought maybe my surgeon's secretary could advise me if she was still in the office. I called and who should pick up the phone but Dr. McCharm himself! He coos, he laughs, he strokes my hand, he adjusts my pillows, he even answers his own phone! He said that if I were getting an infection it wouldn't be happening so quickly. "We were mean to you," he said, which is his way of saying, You've just had surgery, of course you feel like crap. Robin made me chicken soup and a lovely frittata and I felt better soon. And my nephews made me the sweetest card.

Still kickin'

I got home from the hospital late this morning, underarm drain clipped to my clothes. The surgery, from the surgeon's viewpoint, went right in every way -- he says the lump was easy to remove, he got it all, and he took out a suspicious little thing in my breast near my old incision that is probably scar tissue, but -- better safe than sorry. The next hurdle: Of the numerous lymph nodes he removed from my armpit for examination, how many will turn out to have contained cancer cells besides the big guy? The higher the number, the toastier my future. I see him again on Feb. 11.

He is the antithesis of the surgeon stereotype. In the OR, he held my hand and stroked it, position and repositioned a pillow under my knees. The OR team were very kind and professional -- wish I could say the same for the witch who watched over me in recovery. I made barely a peep because she was so scary, but when I asked two or three times to get a pillow or reposition a pillow to ease my pain (I have fractures in my spine, for God's sake), she rolled her eyes, glared at me as though I were a huge inconvenience, and wordlessly and desultorily did the deed. She harangued the poor woman next to me, who was moaning and crying. "You're OK!" she snapped. Then I was transferred to a semi-private room where I was all but ignored by a nurse with the personality of a twig, who also sneered at me as though I were the village idiot imposing on her day. Where do they get these people? The two nurses after that were lovely, though. I can see how overworked they are, and I'm sure they're burned out.

Either one of my brothers was with me the whole day long, and now a friend is nursing me. The back pain is pretty overwhelming now, much worse than the surgery pain. Tomorrow I will start taking an anti-inflammatory again, and hope that helps.

Pollyanna moments:

• A friend sent a biography of Led Zeppelin -- perfect sick-bed reading.
• My students sent hyacinths, which make the house smell lovely.
• After a rough night in the hospital bed, at 6:00 a.m. I took my IV pole and walked up and down the hall several times. It was good to be reminded that despite my back, my legs still work.

Surgery tomorrow

I am scheduled for the first surgery tomorrow -- 7:45 a.m., and I have to be there at 6 a.m.! Yuck. Luckily, my oldest brother, who is taking the day off to accompany me to surgery, is an early riser.

Have spent the past two days immersed in paperwork and conversations with health-care providers and insurance people. Apparently, I have microfractures in my spine. It sure feels like it.

But my appetite is good and I am stuffing my face again as usual. I seem to have gone from the terror-despair-and-tears phase to the denial phase: I keep wondering why everyone is making such a fuss. It's not so bad! I was just kidding! I just made it sound serious so I could hear from all my friends! Stop scaring me with your tears and sympathy! (You will have figured out by now that no matter what you say to a sick person, it's the wrong thing; more on that another day.) This state of mind is greatly aided by judicious doses of pharmaceuticals, and is basically how I've operated for the past four years, latching on to the positive generalizations that the doctors toss around, "You could live a good many years" being my favourite: "good many" is a deliciously elastic and unquantifiable phrase that suits me fine. Much better than the Breast Cancer Workbook put out by AstraZeneca that I read this morning: the chapter on relapse says, "In several cases, people live many years after the cancer has recurred." Several cases? Like, five? Ten? Out of how many? Yikes.

Took my MacBook to the Apple Store on Monday, where a lovely young man with a soft Spanish accent (Pollyanna moment) calmly and expertly "fixed" what was wrong with my wireless. I played the cancer card shamelessly, and was impressed with how speedy the supposed repair was. Of course, I took the machine home again and it still won't connect without a cable. More conversations with Sympatico are in order, but I don't know when I'll find the time.

I am trying to organize the flurry of illness-related paper floating around my house into a binder. This is my new small business, I guess: professional cancer patient. I had so hoped I'd left that job behind.

A friend emailed me a link to a blog by a guy named Dana Jennings who edits for The New York Times and is being treated for advanced prostate cancer. A music geek, he has compiled a playlist of "music to have cancer by" ("Notes to Soothe the Savage Cells"). The two tunes on his Top 10 that resonate strongly with me are "The Weight" by The Band and The Staples Singers (I have watched that song on the film of The Last Waltz about a gazillion times, and I always get goosebumps when I hear Mavis Staples's voice soar and rumble through her gut, and mine); and "I'm So Lonesone I Could Cry" by Hank Williams. And Jeff Buckley's rendition of Leonard Cohen's "Hallelujah," though I know it less well than the other two.

I would compile my own Top 10, but I think it would be too embarrassing. It's just as likely to contain songs by the Monkees as by any other musician. I have been so consumed by the bureaucracy of being sick and by the many phone calls I've received from well-wishers that I haven't been listening to any music at all. Finally put the iPod on this morning and right now I'm listening to one of the starkest, most expertly written pieces of pop poetry I've ever heard: "Sign o' the Times" by Prince. And now "Reelin' in the Years" by Steely Dan -- definitely on my Top 10: "The things that pass for knowledge, I can't understand."

My armpit hurts a lot. I can't wait to get rid of this tumour. Here's hoping they get it all.

Pollyanna moment: It's snowing, my neighbour has shovelled my walk, and I live in a nice warm house.

Unplugging

In case anyone is actually reading this (!): this afternoon I am taking my MacBook laptop to the Apple store to figure out why I can't get wireless internet, and I expect I will have to surrender the machine for a few days. What I will do with no internet or email access, I don't know, though I do know how much that embarrasses me. But right now, being home alone in this situation, that contact is crucial for me.

On the other hand, I'm a Luddite when it comes to phones, and last weekend bought my very first cordless set so that I don't have to get all tangled up in phone lines while lying on the couch. I never liked cordless phones because it seemed like people's batteries were always dying, and you couldn't find the damn handsets, and the reception was poor and you could hear other people's conversations. My house is not that big and I had a regular phone in nearly every room. But so far my new portables are working pretty well, and I feel silly that I waited so long to buy them.

So...the surgery takes place in three days. I hope I'll be able to blog again soon. I'm trying to ignore the utter self-absorption this practice displays and to instead appreciate how much writing helps me keep my panic at bay. No one else is forced to read it!

The other thing that's happening today that may change my situation somewhat: I have to stop taking the anti-inflammatory so that it doesn't promote bleeding during and after the surgery. It has apparently been keeping my bone pain at a 7 instead of an 11; when I had to stop taking it for a few days after the biopsy, the pain was so intense I got trapped one morning in my kitchen and had to call my neighbour to come in and move me to the couch. I screamed so loudly I was afraid my other neighbours would call the cops. (When I'm taking the NSAID, they just hear me moan a lot, and I hope their imaginations are broad enough that they believe I'm having wild sex...) Now I'm going to have to rely on more Tylenol 3s, which make me really dopey. Dopier than usual.

Oh, and by the way, I have told my mother about my illness and no one need worry about letting the cat out of the bag.

Pollyanna moment: My friend and neighbour Diane fixed my upstairs toilet so that it doesn't run anymore!

Three down

I saw the third member of my cancer-care triumvirate (surgeon, medical oncologist, radiation oncologist), and while she seemed to agree that surgery should come first, the order in which the three treatments – surgery, radiation and chemotherapy – should occur still seems like a bit of a crap shoot. I’m scheduled to see the MO on Tuesday and perhaps then will find out more. In the meantime, I felt somewhat encouraged by the RO, who says my armpit was not radiated five years ago and that she can treat it this time, along with the bone tumours. Like last time, I’ll have five weeks of daily radiation, but unlike last time she doesn’t propose doing it concurrently with chemo. So which will come first, I don’t know. In any case, she called the MO while I was there, wrote follow-up letters to both her and the surgeon, and I hope that by Tuesday they’ll all be on the same page vis-à-vis me.

It’s hard for me to imagine that this level of pain would not mean I’m toast. But the RO said that because there’s no cancer in my vital organs, I’m likely to still be around in a year. How can she know that when this has been going on for months and it will be weeks before the radiation and chemo will even begin?

Still, I latched onto her hopeful words, and after 10 days of walking around with my stomach in knots, something in me relaxed. Earlier, the friend who came with me had offered me some cookies, and I turned them down, despairing at my lack of appetite. As soon as the RO said I wasn’t in danger of dying imminently and that my weight loss was undoubtedly due to anxiety, my hand snaked into the cookie bag. I reminded myself of Woody Allen’s character in Annie Hall, whose mysterious illness and inability to eat just before he’s due to present an award in Los Angeles, a place he loathes, magically disappear as soon as he’s let off the hook for the award ceremony, after which he begins to scarf down the chicken he’d disdained moments earlier. I went home, ordered a takeout chicken biryani from Lahore Tikka House, ate more than half of it, then lay down on the couch and fell deeply asleep. I was exhausted. When the phone rang a couple of hours later, I didn't know who or where I was. I guess you can only sustain terror for so long.

If anyone is reading this who has been through a recurrence of breast cancer or is knowledgeable about the topic, they must think I’m a complete idiot. Worse, anyone looking for information about it who stumbles on this blog would be mightily misled by my ignorance (a fact that illustrates the dangerous side of blogs). I’m embarrassed that I know so little about advanced breast cancer. After my bout of breast cancer five years ago, I was so convinced that it wouldn’t come back, and so terrified by the prospect if I did let myself think about it, that I purposely have never done a minute’s research on what a recurrence looks or feels like or what it means. I have avoided the words metastasis and recurrence, and my writing has skirted around the concept or concentrated on early-stage cancer. As a result, I was not aware of what symptoms to look for, and perhaps did not make clear enough to my doctors that I was experiencing what I now think were significant symptoms. All I knew was that if it came back, it was considered incurable, and that death was often the outcome.

Last time, I also assumed I would die when I got the first diagnosis, but quickly learned that wasn’t necessarily true. Then I spent hours doing research on the various treatments available and approached my doctors with considerable knowledge. Ultimately, I learned that there was an 80-percent chance it would never come back.

But now that it has, I feel frozen. I don’t want to read the chapters in Dr. Susan Love’s Breast Book about “what happens if it comes back.” I don’t want to let my gaze slip over to the endgame. So I now feel unsure about what to do next, how to assess the choices ahead of me.

Meanwhile, some of my friends have been reading up on this stuff. They’re probably afraid to tell me what they’ve read! The breast clinic nurse says that the MO can show me the survival rate charts. But I don’t think I want to know this time. I have to believe that I’ll live a few years, but, as Erika Heller said to me, “What am I going to do, circle a date on a calendar?”

Pollyanna moments:

• My mother’s hugs and smile
• My dad playing the harmonica in the seniors’ home, where he was in short-term respite care this weekend
• An unexpected email from an appreciative reader of a magazine article I wrote
• Chicken biryani

Busy, busy, busy

Finding time to write has been difficult; the last couple of days have seen me running hither and yon between hospitals, lawyers and employers, trying to get a gazillion forms signed and insurance claims made. I’ve so far only made a dent in what I need to get done before my surgery. As someone has said, the paperwork alone makes cancer a full-time job. I have two employers, four possible sources of insurance, four primary-care physicians. It’s nuts.

The most frustrating thing is that, as usual, I am having lots of problems with my MacBook, which is my lifeline to the outside world. I no longer have wireless internet, and at least an hour on the phone with Sympatico each day for the past week, plus the installation of a new modem/router, has not solved the problem. As a result, my only comfortable position in which to use the computer, which is lying on my back on the couch (although that’s starting to hurt, too), now sees me getting twisted up in a tangle of cables. Crawling under desks and bending over to connect and disconnect wires has been painful. My next step is to consult Apple to see if there’s something wrong with my Airport card. I don’t know when I’ll be able to do this.

This morning I’m scheduled to see the radiation oncologist; Eileen is coming along. I have to admit I’m scared. I should be receiving the results of last week’s bone scan. The burning pain is spreading around my ribs.

I’m going to see my parents on the weekend to tell them what’s happening. I’m not looking forward to it. My father has dementia, and my mother is already under more stress than she can handle.

I had to tell my students that I would not be teaching them for the rest of the semester. I’ve been with them since September, and they’re a lovely bunch. Some of them hugged me, even one of the guys. Teaching that course is the work I love most, and I was already feeling blue because after this semester it won’t be running anymore. It was hard to leave Ryerson last night after packing up my stuff.

Time for some Pollyanna moments:

• So many people have called and emailed, and I haven’t had time to get back to most of them, but it’s lovely to know people are thinking of me, and are willing to help out. I had a hilarious phone message from Rosemary (“Rosemary of Cynthia’s team reporting in…”), and My Anh sent an email with all of the lyrics to Bob Marley’s “Don’t Worry About a Thing” (’Cause every little thing gonna be all right). Matt and his mom sent cards along with a colourful chain of tiny elephants on a string which now festoon my kitchen spice rack – I’ll never forget!
• My visit with Liz to watch the inauguration ceremonies was very pleasant – her beautiful home was the perfect setting, and she made a bang-up lobster chowder. (Could I use any more adjectives? My writing ability is going right out the window, but I don’t have time to edit.) We also watched her tape of the inauguration pop-music concert, and were just short of dancing around the room to the tunes that hailed from our youth, especially Stevie Wonder with Usher and Shakira doing “Higher Ground.” It was also inspiring to see U2 sing “Pride (In the Name of Love)” in that “I Have a Dream” location in Washington (and also to note that they have finally changed the lyric to get the time of day of Martin Luther King’s assassination correct – am I mistaken in thinking the original song got it wrong?).
• Popping in to work to pick up some things from my desk led to the opportunity to attend the annual employee cocktail party for a few minutes and a chance to see the truly lovely people I work with. Having a few laughs with them cheered me up. When I’m with people I like (and are free with their hugs), my anxiety level drops and I seem to be able to eat better. Diane came over last night and washed my dishes and made me dinner and I ate quite a bit for the first time in days. I was bolstered up for my nightly hour with the Sympatico rep!
• I met with my HR rep and found that the company is being very generous with short-term sick leave.

So…let’s see what the radiation oncologist has to say.

Surgery is on

It’s Obama’s inauguration day, and I should be marking papers. But I hope to watch for a while.

Yesterday I saw the surgeon who is temporarily replacing my previous surgeon. My friend Eileen came with me, taking notes expertly, and we were both impressed. He’s got great bedside manner coming out of his ears – he’s funny, and reassuring but honest. He said I could live another year, 10 years or 20 years depending on whether the cancer responds to treatment. I also spent a long time with a lovely nurse, and then, to my great delight, with the breast clinic’s new patient navigator. Last fall I wrote an article for MORE magazine about patient navigators, and mentioned that Ontario had very few, but they’re starting to pop up and I’m happy to have one available to me now. They operate differently in different jurisdictions – this one is working with patients only through their diagnoses, not through treatment -- but their role is to act as a single point of contact with patients, to educate, troubleshoot, liaise with other health-care providers and be available to answer questions. I’ve already had cause to get in touch with her a couple of times, to ask whether I could restart my anti-inflammatory drugs after my biopsy, and to get advice on bleeding, and reaching her was a lot easier than trying to get through to a doctor.

So – the surgery to remove the mass in my armpit will take place on Thursday, January 29. It promises to be more painful than the breast lumpectomy was five years ago, and I’ll need a month to recover. I’ll have a drain – God, that sounds yucky – that will have to be checked daily by a nurse for a week or so (I think), and I won’t be able to do any lifting for some time. When I had my lumpectomy five years ago, they removed only one lymph node (a relatively new technique then called sentinel-node biopsy), so I didn’t have to endure much arm pain or a drain or long recovery time (as I recall, I threw a Halloween party about five days after surgery). This will be a tougher one.

To prevent bruising, I could stop taking my NSAID, but that’s up to me – I’m not sure I could tolerate more back pain in addition to arm pain, and codeine really gums up your system. I asked about mastectomy, and the surgeon said he’d happily do it at the same time because he’d make more money (doctor comedy), but he feels that since mastectomy would require even longer recovery time, it would impede getting on with the next treatment stage, and trying to get rid of those bone tumours is more important at this point.

Contrary to what I wrote yesterday, he does not think it’s a good idea to try to shrink the tumour before removing it. He says if they’re going to radiate my armpit (which I still doubt is an option anyway), it’s better to do it after the tumour is gone so that the rest of the area can be fully covered.

I pointed out to him that my left breast has for some months looked kind of discoloured and veiny, something I chose to ignore. He explained that that is probably because of the tumour – the lymph drainage is impaired in that area. I can’t believe no doctor noticed this, and I didn’t tell anyone. Maybe I did, but I can’t recall.

So as soon as I'm healed, they'll start throwing all kinds of chemo and radiation at me for God knows how long -- I'll have a better idea in a week or two. Looks like I’ll be off work for several months. The chemo that my oncologist mentioned last week will definitely cause me to lose my hair, and one of the side effects is bone pain! Figure that one out. I may also get peripheral neuropathy (I won’t be able to feel my feet). But she says I might not throw up too much. I’ll believe that when I see it.

I’m not sure whether I will use this forum to write about my feelings and attitudes right now, but I’ve decided that I’m going to regularly record a “Pollyanna moment.” I have learned that all the clichés about positive thinking, half-empty/half-full glasses, etc., stop seeming like clichés when you are really up against a diagnosis like this. Like many breast-cancer patients, I don’t believe it’s all pink ribbons and heroic stories and inspirational poetry and women giggling over wigs and eyebrow pencils. But when the choice is between succumbing to despair, fear and pain, and taking some hope from the strength of people like Erika Heller, whom I interviewed for Look Good Feel Better magazine last year (see page 62) or focusing on silly, nice things that might slip by during an otherwise bad day, I am finding the latter to be preferable. Even though many of my friends complain that I’m a doomsaying fatalist. I have always needed to walk up to the edge of the cliff and take a look, but I don’t have much of a taste for hanging out on the ledge for any length of time. I simply like to acknowledge the grim possibilities (I was a Girl Guide), have a rough plan in my mind for all of them, and then retreat into the now as much as I can. My anxiety level is high right now, and concentrating on my Pollyanna moments really helps, so there you go.

Pollyanna moments yesterday:

• The surgeon was a laugh-riot, standing there in his parka and looking like the janitor (apparently he’s very skilled at his cutting).
• Eileen was a rock, and we went out to Golden Thai for dinner afterward while the snow was drifting softly over the city, and for once Eileen probably ate more than I did. We love the chandeliers in that restaurant. The combination of the light inside the room, all green and warm, and the snow outside was exquisite.
• Yesterday at 8 a.m. the doorbell rang and it was my house cleaner – I had got my dates mixed up and wasn’t expecting her for another week. So my house is clean.
• The patient navigator was a treat, and looked stunning in black suede high-heeled boots and a fetching red suit.
  
• My 13-year-old neighbour plans to come over after school and help me out (“I’m good at cutting vegetables,” he told me).
• So many people have phoned and emailed and offered to help me out.
  
• My friend Liz invited me to watch the inauguration today. Go, Obama!

Here we go again...

January 19, 2009

Well, it looks like the Clothesline Saga is going to resume, and veer off in another direction. I kept up this blog for only a few months in 2006, and then stopped it when I began doing my master’s in education while working. Life was far too busy – for a year and a half I didn’t have a single day off. But I also felt the common uneasiness about blogging – was anybody reading? (Turns out more people were than I suspected, which embarrasses me because I read almost no personal blogs myself.) Was it just self-indulgence? Was it journalism? I was mostly posting observational stuff; I had no desire to expose my personal doings or feelings to the world in such a forum.

Recently I wrote an article (it’s coming out in the March issue of Best Health, possibly the April issue?) about writing as a means to promote health. It deals with the science behind writing as a healing art, and one of the people I quoted was Tasha Westerman, who blogs at http://tashaengel.blogspot.com. She considered herself a non-writer but started the blog for practical reasons – her diagnosis of breast cancer (while her husband has brain cancer and her best friend leukemia) prompted lots of calls and emails from friends and well-wishers, which she found overwhelming, not to mention the fact that it’s tedious to repeat the same update over and over again. The blog helped her keep people informed. Tasha says she later realized the benefits of writing about her symptoms, test results, diagnoses and treatments; it helped her clarify her decision-making process (there’s so much decision-making involved around cancer – see my article “Journey Through the Labyrinth” on my website,); and she thinks it’s had a positive effect on her emotional well-being, which can only help her physically.

So I’ve decided to take the same tack here, and use this blog to report on my situation, for those in my circle who want to know what’s going on with me, whether they check every day or once a month, or whatever. I hope I will still hear from people anyway, but at least we can talk about something more fun than bone scans and Her-2 neu proteins and radiation burns if that stuff has been dealt with here.

I’ve read one or two amazing blogs kept by cancer patients that were beautifully written and informative; for example, Leanne Coppen’s blog on Chatelaine.com about her treatment is well-written, blunt and funny. I don’t know whether I’ll be up to that. Mustn’t forget that having breast cancer the first time through is not the same as having it the second time.

As of today, I have not yet told my parents what’s going on, so if you’re reading this, please don’t spill the beans yet to anyone I’m related to apart from my siblings, who do know. And Mom, if and when you read this, I’m sorry.

The story is: After celebrating my five-year breast cancer–free status last October, it appears my cancer has returned. Another word for that is metastasis. It’s not good news. But advanced breast cancer can be managed in many cases, and I just have to hope that mine will be one of those cases. I have actually been too afraid to read much about recurrence and metastasis so far, but I guess I should start soon. The short version is that I have a 2.5-cm tumour in my left armpit (same side as five years ago, when I had two lumps removed from my left breast), and the results of a CT scan from last week show metastasis in my ribs and in two places in my spine. The good news is that there are no lesions in my liver or lungs. I suppose it’s also good news that the lump is in my left armpit because I’m right-handed.

My oncologist said she wanted the lump to come out soonest, and I have an appointment to see a surgeon in two hours. But she also said it would be better to try to shrink it first, with radiation and/or chemotherapy, because removing a lump that size with all the flesh and lymph nodes around it could really wreak havoc with my arm for the rest of my life (that’s called lymphedema). However, apparently you can only radiate a given spot once, and I’m pretty sure my armpit was radiated five years ago. It wasn’t supposed to be; they were trying to aim the beams only at my breast, as I recall. But the technicians had a hell of a time positioning me on the table in such a way as to miss my armpit, because my fused spine makes me so inflexible. And it wasn’t long before I noticed that I have just a tiny fringe of hair across the top of that armpit – it appears that my sweat glands and most of my hair follicles just died. I used to joke that they could have been kind enough to do the other side and save me all that shaving and deodorant.

But until I see the radiation oncologist, I don’t think the surgeon and the medical oncologist can make a decision on treatment – I believe they all have to sit down together to do that. While the MO seems to think it should all happen this week, my experience is that it’s like herding cats. She made the referrals last Thursday and when I checked the following day -- a day the radiation doc, who’s normally at Princess Margaret, was actually in my hospital, St. Michael’s, doing a clinic -- the referrals had not been faxed through. So I missed seeing her.

Meanwhile, the pain in my upper back is about the same as long as I take Naproxen and usually some Tylenol 3s. The hardest things to do are eating, cooking, washing dishes and working at a desk. Lying on my back is not too bad. Thank goodness for laptops.

So – I’ll let you know what the surgeon says, and in another entry will recount the struggle I’ve had getting somebody to pay attention to this back pain for the past year.