Wednesday, March 31, 2010

The scoop on my cancer

March 14, 2010
Dr Z. got down to the hard facts quickly. I have stage 2 invasive lobular carcinoma. Stage 2 is an early stage cancer and the mass was only about 2cm square, about the size of a peanut. In an earlier post I talked about the LCIS diagnosis I'd been given 15 years ago, which gave me a 1 in 5 chance of developing full-blown lobular carcinoma. Guess what!! I was the one in the group of five. Shoot!

Here's what I learned about my cancer on the Mayo Clinic website. "At some point, abnormal cells may break out of the lobules and invade or "infiltrate" the surrounding tissue, becoming invasive lobular carcinoma. Lobular carcinoma cells tend to break out of the lobule in single file, then invade surrounding breast tissue in a web-like manner. The affected area may have a different feel from normal breast tissue, but it is unlikely to feel like a lump."

I also learned that lobular carcinoma is less common than ductal carcinoma, but that it can metastasize to other parts of the body. PLUS.... it doesn't show up on mammograms, and that's a very worrisome thing.

Patients with the invasive lobular, like mine, all need radiation to kill any of the little buggers still hiding in the lobules, waiting to march off in single file, so "Make an appointment to see Dr Pathare', the radiation oncologist", was first on my To Do list.

Next up was a discussion of my lymph nodes, two of which had turned up positive for cancer. This didn't seem to be much of a good thing in anyone's opinion. Without beating about the bush, what it means is that those pesky little buggers have not only marched, in single file, out of the lobules, but right out of the breast.

There's only one way to deal with marching cancer cells and that's to zap them to kingdom come with chemotherapy. Dr Z. had no doubts at all about this. "Make an appointment to see Val, the vein nurse". Okay. "You'll need a bone scan - I'll set that up for you". Thanks. "When was your last colonoscopy? Book one now". Alrighty. "And have an endoscopy at the same time". "You're going to need an echocardiogram". "Have you had a chest x-ray?". "And you'll need to get your teeth cleaned and checked before you start treatment".

Thank goodness L was keeping track of all this because I was started to feel like a car having one of those really expensive services!

Dr. Z, the cancer beater!

March 13, 2010
I find it takes a while for life-changing news to sink in. The very concept that I had breast cancer and might need chemotherapy struck me as so outlandish and nonsensical that I spent a rather sleepless night trying to figure out what sort of nightmare I'd wandered into.

I awoke, unrefreshed, and set about making a plan. First of all, I needed an oncologist, and I wanted someone local. Going into New York, fighting traffic or spending hours on trains, just didn't appeal. Plus, my friends with cancer all raved about Dr. Zelkowitz who was practically on my doorstep, so I made the call and he told me to meet him on Saturday morning. Now that impressed me mightily. How many doctors do you know who will see a new patient on a weekend?!

Since Peter was on a business trip to Scandinavia, my good friend, L, insisted on coming with me as Note-Taker-in-Chief. Thank goodness, because when I read her notes a few days later, it seemed mostly new information. Who knows where my head was!

It was pouring that day, and cold, which seemed appropriate weather for meeting a cancer specialist. I didn't really know what to expect of Dr Z, but it certainly wasn't an apparition in pink! Pink shirt tucked into blue jeans, loafers with pink socks. Fantastic, I loved it. Every wall of his office was covered with photos of his kids, there was a fish tank with a beautiful fish swimming and plants on his desk. I knew immediately that we'd get on.

Tuesday, March 30, 2010

The hair issue

March 12, 2010
For some reason, after the call with Dr Ward and the mention of chemo, all I could think of was shaving my head. I tried to analyze this thought process with my husband. "Humph. Thought process? You?!, he said in his usual kind and loving manner. Honestly. Men are such linear thinkers.

At this point, I didn't seem to have any control at all over what was coming my way. Chemo sounded grim, but two girlfriends had been through it and they'd both won gold medals in regattas last year, for chrissakes! Plus, I still hadn't met the oncologist so had no idea if I needed chemo. Maybe I didn't!!

Maybe someone would call me up and say, "Gosh, we are so sorry, can't believe this happened, but your results were mixed up in the path lab and it's someone else with the positive lymph nodes". Well, it does happen. They're forever getting bodies mixed up at the morgue on CSI, so the lab could have made a mistake in my case too!

But never mind all that. All I could think about was: Would I look good with a shaved head? I've been wanting to shave my head for years, but I was a generation off and never quite had the courage. But now!! Here was my golden opportunity to shave off the curls and see how it felt. Finally, something to get excited about!

I would have a head-shaving party!! What fun! I asked my children what they thought. The three girls decided they'd take turns learning to cut hair with me as a model, then buzz the rest off. My son .... well, he wasn't quite so keen...... tricky thing for boys, when their mom isn't 100%.

Aiaiai......as my mother would say....

March 11, 2010
Later that day, Dr Ward called with the results. You guessed it.... another good news, bad news conversation.

I go into a zone with this sort of stuff. Good old British stiff upper lip and all that. So the good news was that my lobular wasn't too big, and she'd got good clean margins. The bad news was that she'd taken seven lymph nodes and two were positive.

When you hear this type of thing, your mind goes blank. "Oh, hello. How are you Dr. Ward? Yes, thanks for calling. Yes, I'm fine. Never felt better. Oh, positive lymph nodes. Right. Great! I see. Well, is that a big problem or just a little problem? Biggish problem? " I really admire her for being able to do a job where she has to give people scary news. I can't say enough good things about her -- even though she was on one of her 'bad news' days.

"I'm afraid you might have to have chemotherapy". Wow! That seemed slightly harsh, but I took it in stride and decided to think about it later. In the meantime, I needed to know how to get a team organized to tackle this latest development! I needed an oncologist and an oncology radiologist. Back to the girlfriends.....

Waiting..... waiting.....

March 11, 2010
Maybe it's a female thing, but I'm not a big fan of waiting. And waiting for final pathology results took a toll on my nerves. The longer I waited, the worse I expected the results to be. What were they afraid to tell me?

Dr Ward had already given Peter and my daughter, Francesca, a report on the surgery. They swear I was awake and participating in this conversation, but quite frankly they could have been talking about gay penguins in Antarctica and I wouldn't have remembered. She had taken out the mass, got nice, clean margins and removed several lymph nodes. It had all gone to the pathologist and she'd get back to us soon.

Up until now, I had deliberately kept away from the terrifying world of internet research. Too much information, much of it irrelevant and why scare myself to death reading about things that might not apply? HOWEVER, I'm not totally clueless and I knew that the lump/mass/tumor/my very own lobular was coming out and also the good old sentinel node, first one to drain the breast. But Dr Ward had removed several lymph nodes. Why and what did that mean?

Two thoughts came to mind: maybe the nodes were in a clump and she couldn't get just one. That seemed unlikely. Dr Ward is a first rate breast cancer surgeon. If anyone knows the job, she's the one! The only other option was that maybe the sentinel node wasn't 'clean' so she had to keep going down the line. While you're strapped to the OR table, the surgeon sends off bits to the pathologist to check that the margins and nodes are clean, so they know before sewing you up that they've got everything.

I heard a little alarm bell. Things weren't sounding quite so simple.

Monday, March 29, 2010

Thank goodness for girlfriends!

March 9, 2010
Women are absolutely the best! There's an understanding between women that is impossible to put into words. Like an underground river, deep and powerful, connecting feelings, dramas, joy and sadness. Even if you have only one woman friend, you are never alone!

One of the best things about my rowing club is the women. (Any male members reading this..... I love you too!!). We come in a range of shapes, ages and sizes, different backgrounds, professions and interests, united by our common bond as oarswomen. We train together, compete against each other and spend happy days on riverbanks cheering our teams at regattas.

It didn't take long for word to get out that things weren't 100% in my breast department, and I was buoyed by a huge wave of positive thought for my surgery. My good friend L, also a cancer warrior, asked if people could come to see me for breakfast one day. I was thrilled, of course I wanted to see everyone! And thank goodness for the warning - gave me time to vacuum the floors!

The energy from a roomful of women is almost tangible. I was too sore to hug anyone, but there was a lot of mental hugging and healing coming my way. Girlfriends are the best!! Thank you to all my wonderful friends. You are sending me fantastic vibes. Don't stop!!

Sunday, March 28, 2010

It's no wonder everyone's hooked on pain pills!

March 5, 2010

I'd had a crazy morning inspecting hospital machines and being threaded with wires, so by the time I finally made it to the OR holding pen, I was looking forward to a nap. I'd just dozed off when an old friend, Angela, came charging up, clipboard in hand and hoping that the Fenella on her list wasn't me. I was thrilled to see her. "What the heck are you doing here?", we asked each other. Turns out Angela is now working here, calming patients with her warm efficiency. And we all know what I was doing there!

All of a sudden it was action stations around my bed as an army of women wheeled me into the brightest room I've ever seen. For a brief moment I thought we were in a glass house, but no time to dwell on that because I was heaved onto the table, velcroed down ----- and the next thing I heard was a baby crying!

For a ghastly moment, I lay there in a my post-surgical fog trying to remember if I'd been pregnant that morning - and wondering if it was a boy or a girl. Something was wrong. The next time I surfaced, I realized, thank heavens, that the baby belonged to someone else. I can't tell you my relief. That was easily the scariest part of the day!!

When you're in that drugged twilight la-la-land it isn't easy to keep things straight. But you can still think, right? So when the nurse asked me if I was in pain, and I said no, what earthly reason could she have had to put a dose of morphine into my IV? "I don't want it", I said, or maybe I was mumbling and she didn't understand. "Don't worry, sweetie, it'll make you feel better".

1. Please do not call me sweetie unless you've known me for a very long time. It is intensely irritating and extremely condescending. I have polled my friends, and they all agree.

2. If I tell you I'm not in pain, trust me, I'm not in pain. I am not a superhero. So don't drug me.

3. Prescription strength painkillers are highly addictive. Don't stick that stuff in my IV, especially if I don't want it. PLUS, I got charged for that dose. More about medical charges in a future blog.

4. I was given two separate prescriptions for super-duper extra strength knock you out pills. I can't take that stuff. It makes me feel awful. Extra-strength Tylenol is just as good!

Never mind whether I like these pills or not, the point is that all this stuff is highly addictive AND not necessarily needed. Maybe I have a high pain threshold, I don't know. But I can tell you that Tylenol worked just fine to take the edge off and I didn't need anything else. But they give you the stuff anyway. It's no wonder that people get addicted to pain pills! All you have to do is look pathetic and say, ouch, and bingo, you score a week's supply of Vicodin. This is not a good thing. I'm making a protest!!

Saturday, March 27, 2010

It's just a lump.... let's take it out!

March 5, 2010

Everyone is pretty confident that I have a small mass that can be removed. Oh, but it's protocol to remove the sentinel node to see if any cancer cells have moved out of the tumor. Gosh! This is all starting to sound more complicated.

The lymphatic system is the sewage system for cellular waste in the body. The sentinel node is the first one out of the breast. If that is clean, then you get sewn up and on to radiation. If it isn't clean, then the surgeon moves down the lymph node line until they come up with clean ones.

So hoping for clean lymph nodes, Peter and I set off for the hospital on a bright sunny morning. In short order I was stripped, weighed and measured, wheelchaired and sent back to the MRI machine to have a wire poked into the tumor. Being face down and under strict instructions not to move, I have no idea how they did it, but when I emerged from my tube, I had a 10 inch wire sticking out of me!

Next we dashed off to Nuclear Medicine to inject radioactive dye to located the sentinel node (4 painful shots around the nipple....... little pinch, my foot!), then back at a clip to get some mammograms for another wire to mark something else. Dear Reader..... try to imagine not one mammogram, but 10 of them with wires going in and coming out as they looked for the spot. They'd strapped me into a highchair so I couldn't even make a run for it. Then to top it off, the the nurses just wanted to talk about my curly hair and interior design. Guess it was a distraction!

What a morning! It was a relief to get trundled into the OR and put to sleep!

Friday, March 26, 2010

Why the blog?

Someone asked me why I was bothering to write this blog, dredging up thoughts and feelings that might be best forgotten.

Good question! Here are some answers. Feel free to pick whichever makes most sense to you.

1. I find it cathartic to talk about things that bother me. If the subject is out there and I can talk it through, then the whole thing becomes manageable.

2. Talking about cancer is a bit of a conversation stopper. People who haven't had cancer would rather shy away from the subject. You can see them thinking: "Could have been me. Phew!" When we Baby Boomer ladies went through menopause, we all happily discussed this strange new development. Knowing that we weren't the only person sweating like a pig and incapable of remembering our children's names was a huge comfort. By writing about this new "friend" traveling with me, I hope I can make cancer less terrifying to all of you.

3. After listening to me tell what I'd been through, a friend told me she was so grateful that I was explaining it all to her, just in case she had to deal with it. I've been lucky to have a small cadre of friends who've already been through this. Now I'm spreading the word. Do not be afraid.

4. However awful having cancer might be, I think there are a gazillion things out there that are a heck of a lot worse. Like being eaten by a python in the Florida Everglades, for example. Or getting run over by the garbage truck.

5. Cancer is curable. It's just a disease. Let's talk about it. Let's find a cure!!

What was the point of the MRI?!

March 2, 2010
There was a point early on that I starting feeling like a piece of luggage in transit at at JFK. I'd been checked in, weighed, measured, had a label slapped onto me and thrown on the belt. A relentless one-way conveyor that took me hither and thither without ever getting to a destination. Poked here, prodded there, stuck with needles, deafened by the MRI..... what next? And what the heck was the point of the MRI?

I learned something quite startling as I went through this ordeal. My particular cancer, the lobular, not an uncommon type, isn't a lump, it's just there. AND YOU CAN'T FEEL IT!! So much for breast self-exams! I'd just had my annual GYN exam and the doctor didn't feel it either. AND it doesn't show on a mammogram!! EEK!

Luckily I'd an annual ultrasound which showed this mass, which is what was biopsied, but if I hadn't been on an ultrasound routine, would it just have kept growing? Maybe eventually it would show up on a mammo. So that was the reason for the MRI..... that's the best way to see what's going on inside our bodies, and they were checking for cancer patrols.

Next transit point for this old bag -- surgery!

The pets.....

February 26, 2010
Toby, our dog, and the two cats, Phoebe and Barnaby, knew something was up because for the past couple of months I hadn't been able to move around the house without tripping over all three of them. They say animals can sniff out cancer so maybe their constant presence underfoot was their way of saying: "Oh mighty goddess, You of the hand that feeds us, Rise and and Heal thyself through our Love and Devotion."

It's not easy coming to grips with having a life-threatening disease when you feel as healthy as I do. I look in the mirror and it's the same old me. Yet there is a little army of cancer cells on a slow patrol in my right breast. Random questions come to mind: Why that particular breast? How long have they been there? Would they go away by themselves if I stopped having wine with dinner? Or promised to stop eating chocolate?

For as long as I can remember, I've done all the right things. Always exercised. Always eaten well, mostly that life-enhancing Mediterranean diet. I was a vegetarian for many years. Did yoga. Laughed a lot with friends. Yet, I guess, this wasn't enough to avoid the big C.

I wonder how many people have cancer without knowing it and without it developing into anything. When I had the biopsy 15 years ago and they found LCIS cells I asked: "How do you know that this is abnormal? Suppose you did a biopsy of every 44 year old woman..... how do you know they wouldn't all have these cells??" They thought that was a good question, but they had no answer. It's all a big mystery. Like the Twilight Zone. I've entered the hidden portal.

Wednesday, March 24, 2010

Where's Dr House when you need him??

February 23.
Not content with the breast drill and nail gun biopsy routine, She Who Knows Best, i.e. my wonderful Dr Ward decided that more investigation was needed. "Into the MRI machine with you," she declared, so my pal M. volunteered to spend the morning at the hospital while I was subjected to yet another horrendously expensive torture.

MRIs are those machines that all Dr House's patients end up in sooner or later, while the doctors have meaningful conversations about their love lives as the patient has a seizure. Let me just tell you first of all that not everyone goes into the MRI machine lying comfortably on their back to have a mid-morning snooze. The MRI room looks like something in a nuclear bunker..... DANGER. DO NOT CROSS THE LINE. Yellow tape and buzzers. All high security so you feel a bit weird standing there in your underwear.

I'm not quite sure why I found it so irritating to be called "honey" and "sweetie" by someone by daughters' age as I lay face down, clad only in white knickers, boobs hanging through holes in the table, arms stretched above my head like a diver, but I did. I'm sorry. She was really very nice. I'm not one for too much formality, but I think in the circumstances I would have liked a bit more respect. "Are you all right, Mrs.....?" as the machine hammered and clattered, ear-splittingly, for 45 minutes.

When it was finally over and she came to help me up, I said "Wow, how do older people keep still in that position for so long?". She looked at me oddly. If ever there was a disconnect, this was it. She obviously couldn't fathom why I, an older person, would ask such a dumb question. I, on the other hand, am no way an older person.... I was talking about seriously older people, like my mother, for goodness sakes. Oh my. Treacherous territory.....

Waiting for the result....

February 17.
However much you convince yourself that everything is fine, there's a little niggle lurking deep inside. It keeps popping up and you just have to bat it away and keep thinking positive. I AM FINE!! NEVER BEEN HEALTHIER!!!

Dr Ward said she'd have the results by Thursday but on Wednesday afternoon I couldn't stand it any more and called. By pure chance the results had just been faxed over. Oh good (deep yoga breathing). "There's good news and there's bad news". Oh for heavens sake, not one of those options. Well the good news is always the place to start in my opinion because then you have something to hang on to while you hear the bad. But she started with the bad news anyway, which was that there was a lobular carcinoma in my breast. Being a cancer neophyte, I hadn't the faintest idea what that could be but it had a nice round sound to it. Lobular. Rolled around in the mouth. Okey dokey. So what's the good news? It's estrogen positive so treatment after the lumpectomy will be radiation for a few weeks.

While she was talking I decided to clean the cat litter pan, just to keep myself grounded. Peter hovered in the door sending me good vibes. This was all so mystifying. How could I possibly have cancer when I felt absolutely fine?

Tuesday, March 23, 2010

The Cheerleaders

February 15, 2010
Never one to keep this sort of thing to myself, I told all my close friends that I had to have a breast biopsy. Good friends have trodden this path before me so I figured that harnessing their energy to help me along was the best way to face the challenge.

It is a sad state of affairs that every woman I know has friends who've had breast cancer. I hope that by the time my daughters are my age someone will have figured out how to turn cancer cells to a permanent OFF position. In the meantime, this Adventurer has set off on the path to healing, with a veritable army of friends, cheerleaders and well-wishers to carry her along and keep her spirits up!!

My lovely friend S, who's recently been down this same path and is now fit as the proverbial fiddle, came with me and was a huge comfort. I must say that biopsies have come a long way in the last fifteen years. Now you get to lie on a soft bed with a warm blanket instead of face down on a hard plank with your boob hanging through a hole. They use an ultrasound and Arlene, my nurse, was very sweet, explaining that they were going to position me comfortably and then numb my breast and I would hear loud noises but no pain. Sounded pretty easy. "You might be uncomfortable because you have to keep your arm up above your head without moving". Now that was one thing that didn't worry me. I'm a rower. If there's one part of me that can stand stress it's my shoulders. Anyone who's carried a boat to a regatta knows all about arms above your head. Arlene stood behind me stroking my hair and admiring on my curls.

"Little pinch". Ouch. "Does this hurt?" No. "Close your eyes." OK. (Sound of a drill followed by a nail gun. In my breast!). Times seven. Good grief! I felt that last one.

Later that day.....

February 11, 2010. Evening.....

The second time you're told you need a biopsy -- and notice how no-one says: "We think you may have cancer so we need to take a slice from your body and look at it through a microscope so that you can sweat and torture your mind while we figure it out" --- you're not quite as worried as you were the first time. At least, I wasn't. First of all, the little lump (which I hadn't even noticed) was painful so it must be a benign cyst. Second of all, last time I had a biopsy, there wasn't anything serious, so why should this be any different?

That said, you do still think about it. A lot. The sword of Damocles has started to swing, goshdarnit! All sorts of things go through your mind. "Thank goodness the kids are older, all grown up and functional." "Last time was nothing, ditto this time." "I know I'm fine, therefore I am fine." But a little doubt starts to creep in and it's hard to shut your brain down.

I was teaching that night and that kept my mind off it, for the most part. But every now and then, the little idea that there was a problem jumped into my mind. A slight out of body experience. Looking down at me working the class and thinking, Hmmmm, they don't know you have to have a biopsy. How can I be acting so normal? Should I be freaking out? No, not in my nature. I started to feel as if I were in the Twilight Zone.

The Anniversary

February 11th, 2010. Peter and I have been married for 3 years!! Should be out buying flowers and preparing candlelit supper instead of heading off for the annual breast mashing torture. Wonder why I booked it for today? Mystery.....

You women all know the routine, strip to the waist, get into position face jammed against cold metal and breast flattened to the weirdest shape, stop breathing and pray the machine doesn't jam. "Sit here while we check the pictures". Fine, few more minutes to catch up on People. Peter doesn't understand why I read this stuff, but of course that's how I know a lot of the answers to the crossword puzzle clues! "Just one more picture". Yea, yea. Heard it before. Click, clunk. "Wait out there and they'll come and get you for your ultrasound."

Fifteen years ago I had a funky mammo and they biopsied the breast. The microcalcifications were irrelevant, but the pathologist found something called LCIS, lobular carcinoma in situ. Never heard of it. Is it bad, I asked the doctor. Well..... it's a marker for increased risk to 1 in 4 or 5. You should be checked every year. OK, that's easy. Sword of Damocles but not worth worrying about. So that's why the ultrasound as well as the mammogram.

Ultrasounds are easy. Cold goopy stuff and you can doze while they scan you. This time they seemed to be taking a long time and there's a very sore spot they keep running over. Ouch. Probably a cyst. If it hurts, then that's good, right?

Next stop, to my breast cancer surgeon (even though I don't believe I have cancer since LCIS is not real cancer, at least not in my mind!). Dr Ward is fantastic, one of the best in the US. She's already had the radiologist on the phone and seen my ultrasound. Noone seems to like that little benign cyst they kept squeezing. They want to biopsy it in a few days. For heaven's sake. It's a cyst!

Slightly aggravated at this turn of events, I head off home.