As soon as the temperature rises over 40°F, everyone at the boat house gears up to go out on the river. A long winter of weight lifting, low cardio erg (rowing machine) days, threshold erg days, more weight lifting and back to the erg has got boring. Neon green jackets, hats and pogies appear again and by 7am, rowers are in a pack around the coach waiting for boat assignments. It's too cold for singles - the water temperature is still really low and flipping into the water is more likely in a single scull - so it's doubles and quads.
I'd been training regularly all winter, at least five days a week, and was eager to get back in a boat. The regattas were already listed in my calendar, including the Fisa Masters Worlds regatta which would be in Canada this year, and easy for us to get to. Being an international competition, this annual regatta moves around, like the Olympics, so getting to places like Latvia or Austria isn't easy.
My first low point when I learned about the cancer and the length of the treatment, was that I'd miss the rowing season. I couldn't believe it, after all the hard work this winter! I was really, really angry.........and sad. Sometimes, when faced with traumatic events, we cling to the routines in our life that make sense. Rowing at the crack of dawn, chatting to my friends and complaining about the coffee at our local diner was what I did every morning. This cancer thing was going to impact my schedule in a huge way, especially since I'd be able to see everyone out on the river, hear the coaches yelling from their launch, which I watched from my kitchen window.
People think of grief as something you only feel when a loved one dies, but I think we go through the same stages of grieving when something major happens and changes our life as we knew it. When I was 30 I had knee surgery and was told I'd never be able to run or jump again. I remember feeling totally miserable. Life would never be the same. Slowly, I got used to the new knee - and life resumed. I think this breast cancer challenge will be the same. I hope so.
Wednesday, April 7, 2010
Tuesday, April 6, 2010
The elephant...
Years ago I saw a series of photos in a magazine about a dying elephant in the African savanna. It was an old elephant, dying of natural causes, no hunting or horrible ivory harvesting involved. A large number of elephants of all ages, presumably the dying elephant's herd, appeared through the grasses and slowly gathered around it. They took turns going up to it and stroking it with their trunks. One elephant brought it some leaves to eat. Another brought a bunch of grass. A large male tried to mount it. The babies hung back behind their mothers, still part of the group. They tried everything to make it feel better. Eventually the elephant lay on its side and all the others gathered in a circle to keep it company as it died, surrounded by family and friends.
The elephants stayed with their friend throughout the night. The next day, they all slowly slipped away through the brush and grass.
The elephants stayed with their friend throughout the night. The next day, they all slowly slipped away through the brush and grass.
Monday, April 5, 2010
Our health care system could be improved! (understatement!!)
April 4, 2010
When this is all over, I want to change career and help President Obama get this new health care system organized. I'll do it for free!! I consider myself a fairly typical patient with a pretty serious illness. I won't go into health insurance issues because those are just too frustrating, let's just say I'm glad I have insurance, though I wish I didn't have a $500 copay for each and every ambulatory service.
In the last month I have spent hours and hours seeing doctors, getting stuck with needles and IVs, being put to sleep, woken up, prodded and tested. Each visit costs me money in two ways. Firstly I have a massive copay (on top of the massive monthly premium) and secondly, while I'm taking half and full days to have all these tests, I cannot work and, being self-employed, this is something of an issue. The bills are piling up.
Today was a good example of medical inefficiency. This was my gastro day, scoped from both ends to check that the lobular cell brigade hadn't marched south or north. I've had a colonoscopy before and it's not a huge deal. The prep, where you get to drink 2 liters of a foul tasting potion guaranteed to give you the runs, is the worst part. Once you get to the G.I. lab, they stick you with an IV and send you to la-la land, which is really nice. When you wake you up, they give you a cookie and off you wobble, propped up by your designated driver. The rest of the day you're in a fog.
The day after tomorrow I have to have the port put in. I'll go to the Radiology Dept, which is right next door to the G.I. lab, they'll stick an IV into me, send me to la-la land again, do their thing and there's another day in a fog.
Knowing that these two departments are right next door to each other, I did what I thought was a very clever thing and booked both procedures for the same day, figuring they could knock me out, put in the port, then wheel me next door to scope my innards, all on the same ticket. With more careful planning, I could have had the bone scan and echocardiogram on the same day too. One day in the hospital and it would all be over and done with.
But NO!! Not allowed. "Oh no, dear," said the lady in the bookings department. "Those are two different departments in the hospital." "But they're right next door to each other," I explained. "If I have them together then I only have one copay." I argued and argued. I called Dr Z. who thought I was quite right but this wasn't his call. Bottom line, there was no way to do all this on one day.
Now I've never been to the Mayo Clinic or the other fancy places where people go to have a full body work-up done. I suspect that these de-luxe tune-ups aren't covered by insurance but I'm pretty sure people don't spend more than a couple of days there having a whole slew of procedures, including most of what I've had done. So why couldn't I book procedures back to back? Does it all come down to insurance? No-one seemed to have an answer. The doctors didn't know, the booking people had their instructions, the billing department was just following orders. When the fog lifts, I think I'm going to do some more digging.
I do have some excellent news, though, and that is that all scopes and scans came back CLEAN. So no errant lobular scout cells in the bones or colon or upper G.I. Hallelujah!
When this is all over, I want to change career and help President Obama get this new health care system organized. I'll do it for free!! I consider myself a fairly typical patient with a pretty serious illness. I won't go into health insurance issues because those are just too frustrating, let's just say I'm glad I have insurance, though I wish I didn't have a $500 copay for each and every ambulatory service.
In the last month I have spent hours and hours seeing doctors, getting stuck with needles and IVs, being put to sleep, woken up, prodded and tested. Each visit costs me money in two ways. Firstly I have a massive copay (on top of the massive monthly premium) and secondly, while I'm taking half and full days to have all these tests, I cannot work and, being self-employed, this is something of an issue. The bills are piling up.
Today was a good example of medical inefficiency. This was my gastro day, scoped from both ends to check that the lobular cell brigade hadn't marched south or north. I've had a colonoscopy before and it's not a huge deal. The prep, where you get to drink 2 liters of a foul tasting potion guaranteed to give you the runs, is the worst part. Once you get to the G.I. lab, they stick you with an IV and send you to la-la land, which is really nice. When you wake you up, they give you a cookie and off you wobble, propped up by your designated driver. The rest of the day you're in a fog.
The day after tomorrow I have to have the port put in. I'll go to the Radiology Dept, which is right next door to the G.I. lab, they'll stick an IV into me, send me to la-la land again, do their thing and there's another day in a fog.
Knowing that these two departments are right next door to each other, I did what I thought was a very clever thing and booked both procedures for the same day, figuring they could knock me out, put in the port, then wheel me next door to scope my innards, all on the same ticket. With more careful planning, I could have had the bone scan and echocardiogram on the same day too. One day in the hospital and it would all be over and done with.
But NO!! Not allowed. "Oh no, dear," said the lady in the bookings department. "Those are two different departments in the hospital." "But they're right next door to each other," I explained. "If I have them together then I only have one copay." I argued and argued. I called Dr Z. who thought I was quite right but this wasn't his call. Bottom line, there was no way to do all this on one day.
Now I've never been to the Mayo Clinic or the other fancy places where people go to have a full body work-up done. I suspect that these de-luxe tune-ups aren't covered by insurance but I'm pretty sure people don't spend more than a couple of days there having a whole slew of procedures, including most of what I've had done. So why couldn't I book procedures back to back? Does it all come down to insurance? No-one seemed to have an answer. The doctors didn't know, the booking people had their instructions, the billing department was just following orders. When the fog lifts, I think I'm going to do some more digging.
I do have some excellent news, though, and that is that all scopes and scans came back CLEAN. So no errant lobular scout cells in the bones or colon or upper G.I. Hallelujah!
Thursday, April 1, 2010
The appointments and why I was having them
April 1, 2010
I had absolutely no time to dwell on what it meant to be living with cancer. I had appointments to keep to prepare for the battle with the marching lobular cells.
First up was the radiation oncologist, Dr Pathare, who explained everything about my cancer all over again and told me he'd see me after I'd finished the chemotherapy. You might think I was getting tired of hearing and talking about it constantly, but to be honest, I found that it was grounding me. The more I talked, the easier it was to accept that I had cancer. Especially when Dr Z and Dr P were just talking about the treatment of a disease. Cancer = Disease ergo Treatment = Cure. A perfect way of looking at it.
As we get older, it is sad that so many of us have lost friends to various forms of cancer. Two days ago, an Italian friend died after a battle with glioblastoma, a particularly deadly brain cancer for which there is no treatment. Peter's boss died of the same thing a couple of years ago. It's rare: 1 in 12,000. But breast cancer is in a different realm entirely. It's a disease and so can be cured. That is my take on the problem.
Val, the vein nurse, was next. She met me in the infusion room, a cozy place with recliners around the walls and a central station for magazines, food, and nurses. This is where I'll come for my chemo infusions. My veins have always worked just fine, but Val was of the opinion that they were too small for the chemo so I'd have to have a port put in. More on that later. Sounds ghastly!
On to the gastroenterologist to book an endoscopy to check throat and stomach (there's a gene connecting lobular carcinoma with stomach cancer... wouldn't you know it!) and a colonoscopy to check the other end. I hope they've improved the flavor of that disgusting stuff you have to drink.
Bone scans are done in the Nuclear Medicine department. No painful shots in the breast this time, just a quick jab in one of my perfectly good veins, then back later for a mid-afternoon nap in their imaging machine. I tried not to dwell on this particular appointment. This was the scariest because I knew exactly what the bone scan was all about. Dr Z wanted to check there was no cancer in my bones. However hard I tried not to worry, I couldn't.
The next day I had the echocardiogram..... like an ultrasound but of your heart. No big deal. The old ticker sounded just fine. But again, what was the point? Well..... chemo can damage the pumping action of the heart so they wanted to check that it was alright before we started. Fair enough.
The dentist was great, inspected and polished me up, and sent me off with special floride toothpastes to prevent tooth and gum decay. Apparently, chemo accelerates all sorts of processes in the body, such as plaque build-up and gum problems, and while you're having chemo you don't want to be seeing the dentist!
Last stop, second opinion at one of the big name New York City hospitals. It seemed like the right thing to do......second opinions sometimes come up with something different, but not in this case. Dr Vadhat, at Weill Cornell, was charming and explained everything to me once more, running the numbers for survival rates for the various treatment options, and the bottom line was that I need aggressive chemo, followed by radiation.
Wrong, one more stop. Back to Dr Z for a final face-to-face. He scribbled out a fistful of prescriptions to be filled stat and set me up for chemo next week......
I still simply cannot believe that I have cancer! It is just too extraordinary.
I had absolutely no time to dwell on what it meant to be living with cancer. I had appointments to keep to prepare for the battle with the marching lobular cells.
First up was the radiation oncologist, Dr Pathare, who explained everything about my cancer all over again and told me he'd see me after I'd finished the chemotherapy. You might think I was getting tired of hearing and talking about it constantly, but to be honest, I found that it was grounding me. The more I talked, the easier it was to accept that I had cancer. Especially when Dr Z and Dr P were just talking about the treatment of a disease. Cancer = Disease ergo Treatment = Cure. A perfect way of looking at it.
As we get older, it is sad that so many of us have lost friends to various forms of cancer. Two days ago, an Italian friend died after a battle with glioblastoma, a particularly deadly brain cancer for which there is no treatment. Peter's boss died of the same thing a couple of years ago. It's rare: 1 in 12,000. But breast cancer is in a different realm entirely. It's a disease and so can be cured. That is my take on the problem.
Val, the vein nurse, was next. She met me in the infusion room, a cozy place with recliners around the walls and a central station for magazines, food, and nurses. This is where I'll come for my chemo infusions. My veins have always worked just fine, but Val was of the opinion that they were too small for the chemo so I'd have to have a port put in. More on that later. Sounds ghastly!
On to the gastroenterologist to book an endoscopy to check throat and stomach (there's a gene connecting lobular carcinoma with stomach cancer... wouldn't you know it!) and a colonoscopy to check the other end. I hope they've improved the flavor of that disgusting stuff you have to drink.
Bone scans are done in the Nuclear Medicine department. No painful shots in the breast this time, just a quick jab in one of my perfectly good veins, then back later for a mid-afternoon nap in their imaging machine. I tried not to dwell on this particular appointment. This was the scariest because I knew exactly what the bone scan was all about. Dr Z wanted to check there was no cancer in my bones. However hard I tried not to worry, I couldn't.
The next day I had the echocardiogram..... like an ultrasound but of your heart. No big deal. The old ticker sounded just fine. But again, what was the point? Well..... chemo can damage the pumping action of the heart so they wanted to check that it was alright before we started. Fair enough.
The dentist was great, inspected and polished me up, and sent me off with special floride toothpastes to prevent tooth and gum decay. Apparently, chemo accelerates all sorts of processes in the body, such as plaque build-up and gum problems, and while you're having chemo you don't want to be seeing the dentist!
Last stop, second opinion at one of the big name New York City hospitals. It seemed like the right thing to do......second opinions sometimes come up with something different, but not in this case. Dr Vadhat, at Weill Cornell, was charming and explained everything to me once more, running the numbers for survival rates for the various treatment options, and the bottom line was that I need aggressive chemo, followed by radiation.
Wrong, one more stop. Back to Dr Z for a final face-to-face. He scribbled out a fistful of prescriptions to be filled stat and set me up for chemo next week......
I still simply cannot believe that I have cancer! It is just too extraordinary.
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. 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.
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%.
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