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!
Wednesday, March 31, 2010
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.
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%.
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.....
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.
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!!
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!!
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!!
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