As you might expect, my diet has changed significantly. The only foodstuffs that appeal are of the variety served to me by Mum circa 1968 to 1978; specifically:
Scrambled egg on toast
Cheese on toast
Beans on toast (Heinz vegetarian, although we don't have to specify "vegetarian" in the UK - they're just "beans." Per the advertising: "Beanz Meanz Heinz")
Cauliflower cheese
Spaghetti
I'm only frustrated that I can't get shepherd's pie (giant hint to my British friends.)
Imagine my delight when my dear friend Niki sent me a care package from NYC that included British foods from my youth:
Marmite (natch)
Heinz tomato soup
McVities digestive biscuits
Jammie Dodgers
The aforementioned Beanz courtesy of Heinz
Hoola Hoops (salt & vinegar - a special treat after swimming lessons...)
Miscellaneous chocolate including Aero, Curly Wurly, Crunchie and Maltezers.
And, of course, Heinz Salad Cream. Actually the only reason we ate salad cream back in the day was that Hellmans hadn't yet introduced mayonnaise to the British market. As soon as it was freely available, we wondered what we had been thinking all those years. Salad cream is vile. And possibly as toxic as chemotherapy. Sorry, Niki, you wouldn't have known this. But I shall keep it for nostalgic reasons and the occasional good laugh.
One other really weird 70s flashback happened this morning: I woke up to the tune of The Proud One by The Osmonds running through my head, followed shortly by Abba's Hole In My Soul (which is an obscure Abba song, let me tell you.)
Am I subconsciously seeking the comfort of my coddled youth during this troubled time?
Thursday, July 31, 2008
Monday, July 28, 2008
Just to be clear
I probably need to back up a bit for those not intimately familiar with my situation.
I have Stage 2 invasive ductal carcinoma (i.e., breast cancer.) 1 in 8 women get breast cancer. Most of them (75%) have a hormone receptive cancer. Many of them have the her-2-neu gene. I have a triple negative cancer meaning its neither hormone receptive nor connected with any gene. It's a particularly aggressive cancer.
The good news is at the time of surgery it was determined that I'm "node negative" meaning the cancer doesn't appear to be in my lymph system. That's good.
Many people have asked why I need to have chemotherapy. Truth is, I could decline treatment, stick with the lumpectomy + radiation and go on my merry way. Odds are, I'd have a 70% chance of making it another 10 years. I don't like these odds.
It is widely agreed (and I consulted with three oncologists on this) that this cancer is very responsive to chemotherapy. With eight treatments over 16 weeks, my odds of 10 year survival increase to 85%. I like these odds a lot better. In fact, it seems to me that most people have an 85% chance of surviving the next 10 years, cancer or no. We could all get run over by a bus tomorrow.
Naturally this all totally sucks. Especially the treatment. This really has been the worst year on record (more on that in my memoirs which will not be written for another thirty years.) But as it happens, and as freaked out as I am by what's happening, I've never once thought that this thing would kill me.
So please don't worry about that.
But here are two very important words, ladies: SELF EXAM. This thing didn't show up on mammogram. Not even on the day of biopsy.
I have Stage 2 invasive ductal carcinoma (i.e., breast cancer.) 1 in 8 women get breast cancer. Most of them (75%) have a hormone receptive cancer. Many of them have the her-2-neu gene. I have a triple negative cancer meaning its neither hormone receptive nor connected with any gene. It's a particularly aggressive cancer.
The good news is at the time of surgery it was determined that I'm "node negative" meaning the cancer doesn't appear to be in my lymph system. That's good.
Many people have asked why I need to have chemotherapy. Truth is, I could decline treatment, stick with the lumpectomy + radiation and go on my merry way. Odds are, I'd have a 70% chance of making it another 10 years. I don't like these odds.
It is widely agreed (and I consulted with three oncologists on this) that this cancer is very responsive to chemotherapy. With eight treatments over 16 weeks, my odds of 10 year survival increase to 85%. I like these odds a lot better. In fact, it seems to me that most people have an 85% chance of surviving the next 10 years, cancer or no. We could all get run over by a bus tomorrow.
Naturally this all totally sucks. Especially the treatment. This really has been the worst year on record (more on that in my memoirs which will not be written for another thirty years.) But as it happens, and as freaked out as I am by what's happening, I've never once thought that this thing would kill me.
So please don't worry about that.
But here are two very important words, ladies: SELF EXAM. This thing didn't show up on mammogram. Not even on the day of biopsy.
Sunday, July 27, 2008
Diversions
::Assisted Loving by Bob Morris. Hilarious account of a an 80-year-old man's dating escapades as narrated by his son. Has equipped me with sound advice for my mother as she navigates "courting" for the first time (I think...) since my dad's death. Top tip about elderly widowers: "They're not just looking for love, they're looking for lunch."
::Acai. Brazilian fruit super high in anti-oxidants. Sumner Redstone swears its the key to his longevity (and he's, like, 150 or something.) Actually he's a fan of MonaVie - which at $40 a bottle is clearly not the cheapest guarantee of eternal life (but what does he care.) Available only through a direct sales force (a la Avon), my friend Sarah and I are testing this out. You'll know if it works if you're still around to hang out with us when we turn 100.
::Bacon Egg Bolo by Grand Central Bakery. I suddenly fancied one this morning after a bit of a hike with Annie the dog. Made welcome change to the nursery food I've been eating for the last couple of days. Real bacon with real egg plus tasty salsa over fresh bolo roll made by someone other than me.
In general am still feeling wiped out but my head doesn't feel like its about to fall off. Hopefully this means I'm emerging from the fog of cycle one.
::Acai. Brazilian fruit super high in anti-oxidants. Sumner Redstone swears its the key to his longevity (and he's, like, 150 or something.) Actually he's a fan of MonaVie - which at $40 a bottle is clearly not the cheapest guarantee of eternal life (but what does he care.) Available only through a direct sales force (a la Avon), my friend Sarah and I are testing this out. You'll know if it works if you're still around to hang out with us when we turn 100.
::Bacon Egg Bolo by Grand Central Bakery. I suddenly fancied one this morning after a bit of a hike with Annie the dog. Made welcome change to the nursery food I've been eating for the last couple of days. Real bacon with real egg plus tasty salsa over fresh bolo roll made by someone other than me.
In general am still feeling wiped out but my head doesn't feel like its about to fall off. Hopefully this means I'm emerging from the fog of cycle one.
Friday, July 25, 2008
Somewhat related observations
:: I forgot to mention that on the day of Port surgery, yet another super elderly volunteer led us into a prep room in the short-stay unit at Providence. Her name was Elma. We followed her at snail's pace into the room. She gave me a bag for my shoes then crossed to a cupboard to retrieve three more bags for my shoes (I was wearing flip flops - one pair.) After some discussion we agreed that what was missing was a bag for my clothes.
But I suppose it makes sense that all the Providence volunteers would be very senior citizens. They're in a good place for when the inevitable happens.
:: Late yesterday I was sufficiently recovered to attend a swimming party for my nephew, Max, at The Waverly Country Club (swank, exclusive retreat for the wealthy.) I wore part of my cancer-treatment disguise: complete all-over-body protection from the sun, huge sun glasses - but no hat yet. Am still sporting the ultra-blond, pixie cut provided gratis by the lovely Alissa at Tiger Tiger (tigertigersalon.com) as a pre-empt for inevitable baldness.
Once seated in complete shade I was able to survey the scene - a scene that included a huge, fancy birthday party for some 4-year-old twins that looked more like a wedding: white table cloths on long trestle tables, matching balloons and floral arrangements, huge bbq and full bar, and hundreds of guests - you know, standard procedure for celebrating the fourth year of life.
Imagine my peaked interest when we spotted Michelle Williams with her little girl Mathilda wandering among the partying throngs. What the F? Is Portland, OR that hip? Or just a retreat from all the shenanigans and Heath references surrounding the opening of The Dark Knight? And then imagine how appalled and concerned I was for them when the birthday party entertainment showed up: a clown. Someone wasn't thinking.
But I suppose it makes sense that all the Providence volunteers would be very senior citizens. They're in a good place for when the inevitable happens.
:: Late yesterday I was sufficiently recovered to attend a swimming party for my nephew, Max, at The Waverly Country Club (swank, exclusive retreat for the wealthy.) I wore part of my cancer-treatment disguise: complete all-over-body protection from the sun, huge sun glasses - but no hat yet. Am still sporting the ultra-blond, pixie cut provided gratis by the lovely Alissa at Tiger Tiger (tigertigersalon.com) as a pre-empt for inevitable baldness.
Once seated in complete shade I was able to survey the scene - a scene that included a huge, fancy birthday party for some 4-year-old twins that looked more like a wedding: white table cloths on long trestle tables, matching balloons and floral arrangements, huge bbq and full bar, and hundreds of guests - you know, standard procedure for celebrating the fourth year of life.
Imagine my peaked interest when we spotted Michelle Williams with her little girl Mathilda wandering among the partying throngs. What the F? Is Portland, OR that hip? Or just a retreat from all the shenanigans and Heath references surrounding the opening of The Dark Knight? And then imagine how appalled and concerned I was for them when the birthday party entertainment showed up: a clown. Someone wasn't thinking.
Thursday, July 24, 2008
In case you missed it - here's the review of the lumpectomy:
June 26:
Unable to sleep, I proceeded to the kitchen at 5:30am so I could at least get some calories down before my eating curfew of 7:00am. Scrambled egs. My drinking strategy (8:00am curfew) was not brilliant. I downed three pints of water within about 10 minutes causing me to throw up and have to start over.
It was a morning of acute anxiety. Unable even to bite into half an Ativan, I paced the house furiously waiting for the 10:15am departure time.
On checking in to the hospital, we were guided to a “prep” room by a very nice ancient lady volunteer whom, I feared, would fall over and die before we got there. Seriously, we crept to the room at a snail’s pace. She kept offering to help us when we knew, most surely, that we should be helping her.
My roomie: Evelyn, aged 63, was getting a hysterectomy. I never laid eyes on her and her friends because of the discretely drawn curtain but I could hear them clearly. Evelyn had arrived with a typed-out list of the meds she is taking. The nurse praised her for her organizational abilities. I assumed I was going to get minus points. I mean, I know I must have taken Advil at some point in the last six months but there’s no way I could remember when.
At 11:30am Dr. Lim arrived to shoot me (the tumor, to be precise) up with some radio-active gunk to track the progress of the cancer from the breast to the lymph nodes. It had to be hand delivered by a technician and was packaged in a large metal canister from which I was sure a fog of dry ice would eminate as it was unscrewed. Not so. It was all very unexciting.
1:45pm: a team of nurses swept in to prep me for surgery. I felt like a Formula One car on a pit stop. The head nurse asked me questions and fitted my compression socks, while nurse # 2 hooked me up to a drip, nurse #3 did an ECG and nurse #4 drew blood. Seriously I thought they were trying to beat their best time.
2:30pm: show time. Hot anesthesiologist (yeah, baby) gave me some calming meds through the drip (which did instantly calm) and wheeled me to the OR. I’ve never been in an OR. It was much larger and “whiter” than I imagined. I asked about music and they offered up Creedence Clearwater Revival….”fuck that” I thought and said something much more polite.
Cut to the recovery room. I woke up as they wheeled me in and, in all honestly, immediately felt pretty good. Much better, in fact, than I felt after I had my wisdom teeth taken out. No nausea and they’d shot up my boob with a ton of analgesic which wouldn’t wear off for some hours. The only reason I was in there for over an hour is because there was no room ready for me in the hospital (apparently they were packed that night.)
Dr Lim delivered the good news while I waited. The procedure went as well as had been planned. The tumor hadn’t grown – still only 1.5cm and he’d only had to remove one “hot” sentinel lymph node*. I’m pretty sure he didn’t mean cute (a la anesthesiologist.)
Originally, it had been planned that I would stay over night; however, on meeting my next roomie – who moaned and howled in pain while watching Jeopardy – I felt the need to get out as soon as possible. So, possibly unwisely, I resumed my early morning drinking strategy so I could pee more than 100ml and prove absolutlely that I was fit to go home. I made 600ml my first try and they let me out at 10:00pm.
*post-surgery pathology determined that the tumor was actually 2.1cm - stage 2 - but that I am node negative...some good news there.
Unable to sleep, I proceeded to the kitchen at 5:30am so I could at least get some calories down before my eating curfew of 7:00am. Scrambled egs. My drinking strategy (8:00am curfew) was not brilliant. I downed three pints of water within about 10 minutes causing me to throw up and have to start over.
It was a morning of acute anxiety. Unable even to bite into half an Ativan, I paced the house furiously waiting for the 10:15am departure time.
On checking in to the hospital, we were guided to a “prep” room by a very nice ancient lady volunteer whom, I feared, would fall over and die before we got there. Seriously, we crept to the room at a snail’s pace. She kept offering to help us when we knew, most surely, that we should be helping her.
My roomie: Evelyn, aged 63, was getting a hysterectomy. I never laid eyes on her and her friends because of the discretely drawn curtain but I could hear them clearly. Evelyn had arrived with a typed-out list of the meds she is taking. The nurse praised her for her organizational abilities. I assumed I was going to get minus points. I mean, I know I must have taken Advil at some point in the last six months but there’s no way I could remember when.
At 11:30am Dr. Lim arrived to shoot me (the tumor, to be precise) up with some radio-active gunk to track the progress of the cancer from the breast to the lymph nodes. It had to be hand delivered by a technician and was packaged in a large metal canister from which I was sure a fog of dry ice would eminate as it was unscrewed. Not so. It was all very unexciting.
1:45pm: a team of nurses swept in to prep me for surgery. I felt like a Formula One car on a pit stop. The head nurse asked me questions and fitted my compression socks, while nurse # 2 hooked me up to a drip, nurse #3 did an ECG and nurse #4 drew blood. Seriously I thought they were trying to beat their best time.
2:30pm: show time. Hot anesthesiologist (yeah, baby) gave me some calming meds through the drip (which did instantly calm) and wheeled me to the OR. I’ve never been in an OR. It was much larger and “whiter” than I imagined. I asked about music and they offered up Creedence Clearwater Revival….”fuck that” I thought and said something much more polite.
Cut to the recovery room. I woke up as they wheeled me in and, in all honestly, immediately felt pretty good. Much better, in fact, than I felt after I had my wisdom teeth taken out. No nausea and they’d shot up my boob with a ton of analgesic which wouldn’t wear off for some hours. The only reason I was in there for over an hour is because there was no room ready for me in the hospital (apparently they were packed that night.)
Dr Lim delivered the good news while I waited. The procedure went as well as had been planned. The tumor hadn’t grown – still only 1.5cm and he’d only had to remove one “hot” sentinel lymph node*. I’m pretty sure he didn’t mean cute (a la anesthesiologist.)
Originally, it had been planned that I would stay over night; however, on meeting my next roomie – who moaned and howled in pain while watching Jeopardy – I felt the need to get out as soon as possible. So, possibly unwisely, I resumed my early morning drinking strategy so I could pee more than 100ml and prove absolutlely that I was fit to go home. I made 600ml my first try and they let me out at 10:00pm.
*post-surgery pathology determined that the tumor was actually 2.1cm - stage 2 - but that I am node negative...some good news there.
The Day After Chemo
I'll caveat the whole of this business by admitting that I had vowed not to blog. But there are so many concerned friends and darling well-wishers that it's clearly easier to do some kind of "state of the nation" that everyone can tune into on their own time (oh, and that I don't have to repeat over and over.)
Anyhoo....the last couple of days have been stressful. I went into Providence late on Tuesday to have a port put into my chest. The procedure was to take only an hour and the instruction to the surgeon was to leave the needle in so that the nurse at the oncology clinic wouldn't have to dig around to get access the next day. My surgeon, as it turns out, does not believe in doing this. And my only opportunity to debate the issue was in the OR in the few minutes before they knocked me out. He closed up the incision and left a big blue pen mark as a target for the nurses. No needle.
I felt OK coming out of the anesthetic - not as great as after the lumpectomy when I was practically euphoric. But OK. They told me to go home and eat Jello, dry toast and apple sauce. I had a steak. Later in the evening my right arm became mysteriously painful to move. Vicadin was my friend that night.
So yesterday I showed up at The Oregon Clinic with my brand new Port (still bloody) and the poor nurses' faces blanched at the sight of its needlelessness. They all (nurses and doctor) commented that my surgeon is the ONLY surgeon that won't do this. And, indeed, it took two pokes with increasingly large needles to get into the artery. Rhett (attentive husband) pointed out that there was a big target mark in blue pen for the nurses to use, but they said that was rather condescending of the surgeon. What do we know? I thought the "poke me here" indicator was kinda handy. Needless to say, I had to have extra Ativan during this bit.
Thence unto the Infusion Room. I sat as far away from anyone else as I could and focussed on Elizabeth. The Golden Age. provided by the clinic on handy mini DVD player. She had a lot of good wigs. She also had to run a country at war, which, I imagine, was very stressful. And no Ativan! Anxiety-management must have been nigh-on impossible in those days. Just get drunk and execute people for distraction?
They dripped anti-nausea meds into me for an hour then the big stuff: two huge tubes of bright red chemicals were pushed into me by the nurse for twenty minutes then one big bag of white chemicals were dripped into me. This takes us to 5:30pm. So, clearly, this is going to be a 3-4 hour process everytime.
Thereafter I felt like I had a chemically hangover. Not unmanageable. I ate some broccoli and fish for dinner and went to bed to watch So You Think You Can Dance which, actually, post chemo, is really a crap show. Maybe chemo will show me the truth.
I felt, and continue to feel, a bit like I have minor indigestion and there's a tingly sensation in my hands and around my face which is subsiding as time goes one. I have to go back this afternoon for a shot of something that will help get my white cell count back up. I also have to remember to take additional meds around lunchtime today.
All this for someone who rarely ever took Advil.
Anyhoo....the last couple of days have been stressful. I went into Providence late on Tuesday to have a port put into my chest. The procedure was to take only an hour and the instruction to the surgeon was to leave the needle in so that the nurse at the oncology clinic wouldn't have to dig around to get access the next day. My surgeon, as it turns out, does not believe in doing this. And my only opportunity to debate the issue was in the OR in the few minutes before they knocked me out. He closed up the incision and left a big blue pen mark as a target for the nurses. No needle.
I felt OK coming out of the anesthetic - not as great as after the lumpectomy when I was practically euphoric. But OK. They told me to go home and eat Jello, dry toast and apple sauce. I had a steak. Later in the evening my right arm became mysteriously painful to move. Vicadin was my friend that night.
So yesterday I showed up at The Oregon Clinic with my brand new Port (still bloody) and the poor nurses' faces blanched at the sight of its needlelessness. They all (nurses and doctor) commented that my surgeon is the ONLY surgeon that won't do this. And, indeed, it took two pokes with increasingly large needles to get into the artery. Rhett (attentive husband) pointed out that there was a big target mark in blue pen for the nurses to use, but they said that was rather condescending of the surgeon. What do we know? I thought the "poke me here" indicator was kinda handy. Needless to say, I had to have extra Ativan during this bit.
Thence unto the Infusion Room. I sat as far away from anyone else as I could and focussed on Elizabeth. The Golden Age. provided by the clinic on handy mini DVD player. She had a lot of good wigs. She also had to run a country at war, which, I imagine, was very stressful. And no Ativan! Anxiety-management must have been nigh-on impossible in those days. Just get drunk and execute people for distraction?
They dripped anti-nausea meds into me for an hour then the big stuff: two huge tubes of bright red chemicals were pushed into me by the nurse for twenty minutes then one big bag of white chemicals were dripped into me. This takes us to 5:30pm. So, clearly, this is going to be a 3-4 hour process everytime.
Thereafter I felt like I had a chemically hangover. Not unmanageable. I ate some broccoli and fish for dinner and went to bed to watch So You Think You Can Dance which, actually, post chemo, is really a crap show. Maybe chemo will show me the truth.
I felt, and continue to feel, a bit like I have minor indigestion and there's a tingly sensation in my hands and around my face which is subsiding as time goes one. I have to go back this afternoon for a shot of something that will help get my white cell count back up. I also have to remember to take additional meds around lunchtime today.
All this for someone who rarely ever took Advil.
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