Almost every year since Cancer #1, Mike and I have participated in the Race for the Cure. We get up at o'dawn hundred in order to get a good parking space near Reid Park and then spend the pre-walk time browsing the exhibits and getting free stuff (score!), going to the survivors tent for free breakfast and to sign the big long survivors ribbon. On the ribbon, you are supposed to put when you were diagnosed and how long you've been cancer free. Since Cancer #2, I've been flummoxed as to what to put...12 years? 5? and next year, should it be 0? Maybe I should simply write: "2000, 2007, 2012, and I'm still here!"
"Finding Chemo" is the team name for the staff from the cancer center. They show up every year wearing t-shirts and hats with little stuffed Nemos attached. They cheer loudly and walk proudly. They are the nurses and staff who work to make the center less a place of fear and more a place of comfort and caring. If there was ever a year where they did not show up, it would be a far less enjoyable walk for me. After the race, there is always a survivors ceremony where all of us are invited onto the stage and someone sings "I will survive". I've done this once and as schmaltzy as the song is, it still brings tears to my eyes. It was a pretty powerful thing and something I can't bear to do again.
Over the last three months, I've been finding my own chemo and not to put too fine a point on it: it has royally sucked. My doctor recommended a 6 month regimen, which started in late May. This means I'll be getting treatment through the end of October. There are 6 cycles of two weeks "on" and two weeks "off". At the beginning of a cycle, I go for an infusion of two of the drugs and the same a week later. For those two weeks, I take one of the drugs by mouth at night before I go to bed. 7 pills. Every night. My biggest fear about this regimen is that my stomach has never been well-behaved even when I am healthy. Three months in, my fears have proven well-grounded. My stomach is a mess. The first two cycles, I was so nauseous and having so many gastric problems that I despaired of making it through to the next one. I wanted to quit, I threatened to quit, and scared the bejeezus out of Mike by saying that. My doctor advised eating only starches before bedtime (bread, rice, potatoes) and maybe a little chicken for protein. No fruits or vegetables or anything that could upset my stomach at any time during the day. My body is one big craving hampered by abdominal pain and other nasty things. I basically eat nothing for two weeks. I dream of gourmet food. I watch the Food Network and pretend I am eating the delicious things I see. I plan what I will eat in November when all this is over: fruit, salad, ice box cakes (there were 10 in Sunset Magazine. I want them all), fish, steak, hamburgers, chocolate, coffee, roasted asparagus. The list is endless.
True to her word, my doctor has worked with me each time on finding ways to minimize and manage the side effects. I've had prescription after prescription filled and discarded. The latest seems to be working a little better, but I still lie on the sofa and try not to notice my stomach. I try not to feel miserable and tell myself to be stronger. I tell myself that some people live with pain and discomfort much worse than this - and still manage to be cheerful. I hate these phantom people. I tell myself to do something, anything to keep my mind off how I feel. Read, do a puzzle, watch TV, something, anything. But sometimes I am too tired to even open my eyes, although I can't sleep. I wake up at 3:30 almost every night and slink out to the living room. I imagine phantom women who still work, take care of their kids, go to the gym while undergoing treatment - and I feel like a loser for not being like them. I try to give myself pep talks, and I try to celebrate still being alive. Sometimes it works, sometimes it devolves into a pity party.
We are at the cancer center at least three times a week, hours at a time. The drive alone from our house is 45 minutes. Mike is a rock. He never complains when we have to go at unexpected times. He packs his computer case and sits on a less than comfortable chair and goes through everything with me insofar as he can. I worry about him and have instigated a plan for him to get regular massage. I hope it helps. I hope that I don't keep him up at night. I hope I'm not a pain in the ass.
I now have daily appointments for fluids in case I need them. Chemo has been postponed once for several days because I got a fever and an infection, which I am still being treated for. Last week we spent 6 hours there in one day because my potassium was low and you can only get 10mg an hour. I'd already been there three hours when they decided to give me 30 mg (they actually wanted to give me 40, but then we would have been there after they closed). Last Wednesday, I went in for fluids because I was so utterly miserable and I hoped they would help. My abdominal pain was so bad I was near tears. My doctor turned around after being on her way home to come see me in person after a call from the nurses.That day was the last day of my "on" cycle and I was worried about having to take the pills that night. She told me not to and I felt so much relief, I cannot even describe it. She held my hands, she told me I was not a problem child (my term, not hers). She reiterated how rough this regimen was and how strong I was to have gotten halfway through. I want to believe her.
But there is always a silver lining and I often focus on that. I have a loving family and many loving friends. I get warm fuzzies logging into Facebook every day and looking at my Facebook Zoo (thanks to Lise for that term and to all of you who post there). I have family that visit and call and check in almost daily. I get cards and hugs and warm blankets (the cancer center gives you them when you are treated). I get to read mysteries, snuggle with my dog, and watch sunsets and sunrises. I have a freezer full of the best ever pumpkin bread and hot fudge sauce (thanks Mom and Cath!) that I can eat when I feel better. I get text pics and phone calls from Joe. I get flowers and calls from my yard guy just to see how I am doing - and flowers from Mike every time he goes to the grocery store. I get healing hands from my good friend Pat who sometimes drops everything to help out when I am feeling my worst. I get treated to spas in my "off" periods and can even sometimes eat real food then. I get emails from caring friends that always boost my spirits, even when I don't feel well enough to answer right away. Often when I sit out on the pool deck and watch the sunrise, listening to the birds, watching the dragon flies drink from the pool, and the way the sky changes colors, I think: Life is good. I am truly blessed.
Monday, August 6, 2012
Saturday, June 16, 2012
Surgery and Then Some
The taste of whipped cream reminds me of my eldest sister. There is no mystery as to why this is so. It is simply because she makes the best hot chocolate on the planet. It is the best not because it comes from a fancy Ghirardelli gourmet tin; she uses plain old Hershey's cocoa. Yet, when she hands me a mug topped with a generous amount of whipped cream, it is an elixir, an ambrosia that comforts my soul and warms my toes and heart. Not to mention that my sister believes in the notion of second helpings of whipped cream. This is something I had never thought of before. You make the cocoa, you put the whipped cream on top, you let it get a little melty and then you scoop it all up until it is gone. What is left is a cup of lonely, whipped-creamless hot chocolate...unless you are my sister, in which case more whipped cream goes in. It reminds me of "second breakfast" from the first Lord of the Rings movie. I feel strangely liberated from the odd constraint I had apparently placed on myself all these years - that one can have only a single cloud of whipped cream on one's cocoa or, indeed, only one breakfast.
I am actually the youngest of three and have two older sisters. We grew up in New England, about 20 miles north of Boston. For us, hot chocolate was what you had on cold snowy mornings when school was canceled, or after you went sledding, or went skating on the stream back in the woods behind the house, or you'd just been outside building snow forts or snowmen or both. We would come in wet, cold, red-cheeked, with runny noses, but happy grins. At that time, it was my mom that made the cocoa - in the same old-fashioned way. And it was just as delicious. I have never understood why some people don't like cocoa.
It was my eldest sister who came to stay with us to help out just before and for some time after surgery. The surgery was scheduled two weeks after my visit with the oncological surgeon. We met with the plastic surgeon (who looked exceptionally young) at the end of the same week that we first met the former. After listening to his advice and asking lots of questions, I decided not to have reconstruction right away. To do so would prolong my recovery and delay chemo, if chemo was necessary (it was and is). There was also no guarantee of success for the kind of reconstruction I wanted. I learned that my situation (two prior cancers with radiation) calls for a more extensive type of reconstruction, the success of which is higher if you wait. When I learned that this type of surgery would take 10-12 hours in the operating room, I began to think I could do without. I loathe surgery, particularly the waking up part. I would spare myself that even if it means I will be forever flat-chested.
The weeks before the surgery passed rather hectically as I was busy arranging my classes in such a way that others could take over. I tried to cross every 't' and dot every 'i' in the hopes that things would go smoothly for my generous and caring colleagues (faculty, students, and staff). Because I am so fortunate to work with people who are incredibly wonderful and supportive, I was able to let go of any worry that my students would be left confused and unhappy. The day I told my classes I had to leave for medical reasons was rather stressful. I truly enjoy my teaching and was having a fabulous time. I did not want to leave. I also did not want them to worry, yet wasn't really sure whether such an announcement would upset anyone at all. It is often hard to tell whether the rapport you think you have with your students is all in your head or the genuine article. On my last day with my two larger classes, I received an orchid, a candle, a stuffed lamb (they all knew how much I love sheep), and a card from each class signed by many. It was so incredibly touching and unexpected that I was overwhelmed. One of my students also brought energy bars that she had made herself. She told me she looked up all the things that are good for my particular illness and packed them with all sorts of delicious and healing ingredients. They were, in fact, delicious. I read a book recently in which one of the characters "counted his sums" every night before he went to bed. What he counted were his blessings, and I think I could reach quite a high number just from this paragraph alone.
The night before my surgery I was scared to death and trying not to show it. Mike and my sister gamely tried to keep my mind off of it (we played cards, watched a movie, and my sister made comfort food; I wanted mashed potatoes), but all I could think about was that by that time the next night, several pieces of me would no longer be there. It is all well and good to remind yourself that your body is not you, but another thing altogether to make yourself believe it. I tried to shuffle words like "amputation" away and concentrate instead on what the removal of my breasts would do for my body. It was a tough sell. Before going to bed, my sister asked if she could "smudge" me. We went out on the porch and in the glow of the lights strung along the beams, she lit a sage stick and moved around and about me. I am not sure what she said, but it is a moment I will always remember.
The morning of surgery I was even more scared. I simply do not like being put under. I utterly despise it. It was a minor relief that the surgical staff were so nice. They didn't mind at all that Mike and I played Uno while we waited for my turn in the OR (I kept losing, of course). The anesthesiologist in particular was incredibly caring. We told him that I am hard to intubate, which had caused problems in previous surgeries. He very methodically considered how they should go about it this time. I just got more and more nervous by his Plan As and Plan Bs, despite the fact that he was clearly brilliant. But then he said, "We treat everyone here like family; if you were my daughter, this is how I would do it.". I felt somewhat better then.
They wheeled me to the "kissing corner" where I said good-bye to Mike and my sister. I remember being in the OR, the chatter of the surgical team, and hearing the anesthesiologist say, "OK, we can go ahead and get started". I said, "Um, am I still supposed to be awake?". They laughed and said all was well. They'd been "pre-oxygenating" me but at that point they told me to go to my happy place. They said that the anesthesiologist was from Hawaii and when I was well, I could visit him there; he offered to make me pulled pork for dinner and the others maintained that no other pulled pork could hold a candle to his. Not unexpectedly, and to the utter hilarity of Mike and my sister, "pulled pork" was the first thing I said to them when I woke up. They maintain that I was mumbling "pulled pork" over and over. Despite my explaining how perfectly reasonable this was, they still think it incredibly funny.
I won't dwell overmuch on post-surgical details. I'll just say that it was really quite hard, especially mentally. My sister had offered to stay the night with me in my hospital room and when we saw how small it was, it looked like it might not be possible. I had initially told her it wasn't necessary but in that moment, after having been placed from one bed to the other, groggy, in pain, and still terrified, I realized just how much I did not want to be alone that night. She stayed and it was so soul-warmingly comforting, I can't even describe it. Mike stayed until quite late and then came along again the next morning. I was discharged that afternoon. All of the nurses and staff were awfully good to me and after one brief meltdown when bandages were being checked, one nurse held my hand and said, "You are so much stronger than you think. Last night you told me you couldn't imagine getting out of bed, but when I came on duty this morning, you were walking around the ward. Not everyone could have done that. You will get through this." When I left I had four tubes hanging off of me, which made dressing a challenge. Two for drainage and two for pain. We realized after about a week that one of the pain pumps had been disabled and never worked. I described the sensation of suddenly having no breasts like this: Imagine you have a big wide rubber band around your chest that is way too tight, and now light it on fire. Not to mention you suddenly have six arms which cannot simply dangle but must be supported. The pain pumps had straps to put over my shoulders, but the drainage tubes had to be pinned to whatever I was wearing. I had the pumps for two weeks and the drains for three. Once home, bandages had to be changed, but I squeezed my eyes tightly shut for that and for my first several showers. I did not want to look, not even the tiniest peek. Mike covered the mirrors for me, changed the dressings, and emptied the tubes. My sister attended to the tubes and dressings, too. I was well looked after. Sometimes I cried, though. I couldn't help it.
The surgery was on April 5th, so a lot of time has passed since then. I have had physical therapy in order to get back the range of motion in my arms and for the lymphedema that I've had since Cancer #1 and that reared its ugly head after Cancer #3. I have started chemo, which no one, including my doctor, expected to hit me as hard as it has so soon.
On the morning that my hair started to fall out in clumps all over my pillow and after I watched it go down the drain in the shower, I made myself a cup of cocoa with two helpings of whipped cream.
I am actually the youngest of three and have two older sisters. We grew up in New England, about 20 miles north of Boston. For us, hot chocolate was what you had on cold snowy mornings when school was canceled, or after you went sledding, or went skating on the stream back in the woods behind the house, or you'd just been outside building snow forts or snowmen or both. We would come in wet, cold, red-cheeked, with runny noses, but happy grins. At that time, it was my mom that made the cocoa - in the same old-fashioned way. And it was just as delicious. I have never understood why some people don't like cocoa.
It was my eldest sister who came to stay with us to help out just before and for some time after surgery. The surgery was scheduled two weeks after my visit with the oncological surgeon. We met with the plastic surgeon (who looked exceptionally young) at the end of the same week that we first met the former. After listening to his advice and asking lots of questions, I decided not to have reconstruction right away. To do so would prolong my recovery and delay chemo, if chemo was necessary (it was and is). There was also no guarantee of success for the kind of reconstruction I wanted. I learned that my situation (two prior cancers with radiation) calls for a more extensive type of reconstruction, the success of which is higher if you wait. When I learned that this type of surgery would take 10-12 hours in the operating room, I began to think I could do without. I loathe surgery, particularly the waking up part. I would spare myself that even if it means I will be forever flat-chested.
The weeks before the surgery passed rather hectically as I was busy arranging my classes in such a way that others could take over. I tried to cross every 't' and dot every 'i' in the hopes that things would go smoothly for my generous and caring colleagues (faculty, students, and staff). Because I am so fortunate to work with people who are incredibly wonderful and supportive, I was able to let go of any worry that my students would be left confused and unhappy. The day I told my classes I had to leave for medical reasons was rather stressful. I truly enjoy my teaching and was having a fabulous time. I did not want to leave. I also did not want them to worry, yet wasn't really sure whether such an announcement would upset anyone at all. It is often hard to tell whether the rapport you think you have with your students is all in your head or the genuine article. On my last day with my two larger classes, I received an orchid, a candle, a stuffed lamb (they all knew how much I love sheep), and a card from each class signed by many. It was so incredibly touching and unexpected that I was overwhelmed. One of my students also brought energy bars that she had made herself. She told me she looked up all the things that are good for my particular illness and packed them with all sorts of delicious and healing ingredients. They were, in fact, delicious. I read a book recently in which one of the characters "counted his sums" every night before he went to bed. What he counted were his blessings, and I think I could reach quite a high number just from this paragraph alone.
The night before my surgery I was scared to death and trying not to show it. Mike and my sister gamely tried to keep my mind off of it (we played cards, watched a movie, and my sister made comfort food; I wanted mashed potatoes), but all I could think about was that by that time the next night, several pieces of me would no longer be there. It is all well and good to remind yourself that your body is not you, but another thing altogether to make yourself believe it. I tried to shuffle words like "amputation" away and concentrate instead on what the removal of my breasts would do for my body. It was a tough sell. Before going to bed, my sister asked if she could "smudge" me. We went out on the porch and in the glow of the lights strung along the beams, she lit a sage stick and moved around and about me. I am not sure what she said, but it is a moment I will always remember.
The morning of surgery I was even more scared. I simply do not like being put under. I utterly despise it. It was a minor relief that the surgical staff were so nice. They didn't mind at all that Mike and I played Uno while we waited for my turn in the OR (I kept losing, of course). The anesthesiologist in particular was incredibly caring. We told him that I am hard to intubate, which had caused problems in previous surgeries. He very methodically considered how they should go about it this time. I just got more and more nervous by his Plan As and Plan Bs, despite the fact that he was clearly brilliant. But then he said, "We treat everyone here like family; if you were my daughter, this is how I would do it.". I felt somewhat better then.
They wheeled me to the "kissing corner" where I said good-bye to Mike and my sister. I remember being in the OR, the chatter of the surgical team, and hearing the anesthesiologist say, "OK, we can go ahead and get started". I said, "Um, am I still supposed to be awake?". They laughed and said all was well. They'd been "pre-oxygenating" me but at that point they told me to go to my happy place. They said that the anesthesiologist was from Hawaii and when I was well, I could visit him there; he offered to make me pulled pork for dinner and the others maintained that no other pulled pork could hold a candle to his. Not unexpectedly, and to the utter hilarity of Mike and my sister, "pulled pork" was the first thing I said to them when I woke up. They maintain that I was mumbling "pulled pork" over and over. Despite my explaining how perfectly reasonable this was, they still think it incredibly funny.
I won't dwell overmuch on post-surgical details. I'll just say that it was really quite hard, especially mentally. My sister had offered to stay the night with me in my hospital room and when we saw how small it was, it looked like it might not be possible. I had initially told her it wasn't necessary but in that moment, after having been placed from one bed to the other, groggy, in pain, and still terrified, I realized just how much I did not want to be alone that night. She stayed and it was so soul-warmingly comforting, I can't even describe it. Mike stayed until quite late and then came along again the next morning. I was discharged that afternoon. All of the nurses and staff were awfully good to me and after one brief meltdown when bandages were being checked, one nurse held my hand and said, "You are so much stronger than you think. Last night you told me you couldn't imagine getting out of bed, but when I came on duty this morning, you were walking around the ward. Not everyone could have done that. You will get through this." When I left I had four tubes hanging off of me, which made dressing a challenge. Two for drainage and two for pain. We realized after about a week that one of the pain pumps had been disabled and never worked. I described the sensation of suddenly having no breasts like this: Imagine you have a big wide rubber band around your chest that is way too tight, and now light it on fire. Not to mention you suddenly have six arms which cannot simply dangle but must be supported. The pain pumps had straps to put over my shoulders, but the drainage tubes had to be pinned to whatever I was wearing. I had the pumps for two weeks and the drains for three. Once home, bandages had to be changed, but I squeezed my eyes tightly shut for that and for my first several showers. I did not want to look, not even the tiniest peek. Mike covered the mirrors for me, changed the dressings, and emptied the tubes. My sister attended to the tubes and dressings, too. I was well looked after. Sometimes I cried, though. I couldn't help it.
The surgery was on April 5th, so a lot of time has passed since then. I have had physical therapy in order to get back the range of motion in my arms and for the lymphedema that I've had since Cancer #1 and that reared its ugly head after Cancer #3. I have started chemo, which no one, including my doctor, expected to hit me as hard as it has so soon.
On the morning that my hair started to fall out in clumps all over my pillow and after I watched it go down the drain in the shower, I made myself a cup of cocoa with two helpings of whipped cream.
Thursday, June 7, 2012
Fast Forward
I think every girl should get a pedicure before surgery. Let's face it: you won't be wearing anything at all while the doctors work on you, so you might as well dress up your toes. Mine were an iridescent blue-green that reminded me of peacocks. I had a white flower with dashes of hot pink and black and a tiny rhinestone on each big toe. No Jimmy Choo shoes, but I would say my toes had a little extra something going on.
I guess I'm getting ahead of myself, though. I'll admit that things went awfully fast, and I don't think I've caught my breath at all yet - but let me back up a bit. Mike and I drove home from Morro Bay on the last Sunday of Spring Break. We spent the Saturday after hearing the news pretending that we hadn't heard anything. Sunday was a long drive home and a full work week to start immediately on Monday. My doctor had told me she would send the surgeon she recommended an email asking for an appointment on my behalf. We expected something later in the week. I had a morning class, co-taught with a friend, and attended that. I got back to my desk to a message from the surgeon's office: could we make an appointment that afternoon? Yikes. Mike wasn't even on campus and so would have to meet me there.
When I got to the office, Mike was already there. I filled out all that irritating standard paperwork that makes you wonder what the point of it is. They already know my phone number because they called me. The system is the same as for my medical oncologist, so it's perfectly well available already. It makes me grind my teeth. I remember during Cancer #2 writing in silly things just to see if they noticed, something to do with a daily intake of chocolate. No one ever said a word.
The new surgeon impressed us both as being utterly brilliant but also as someone trying very hard to have a comforting bedside manner that isn't the norm for her - as if she read a manual on how to do it and was determined to make it work. To me, it made her even stiffer, but that was okay. She didn't need to hold my hand or hug me; she just needed to be good at her job. And I truly do think she has a good heart. She reviewed the pathology from the biopsy with us and basically said she just didn't think a lumpectomy was on the table this time. She said that if I opted for anything other than a bilateral mastectomy, she would worry about me. My cases have always been what they now call "triple negative", which has to do with various tumor markers they check in the pathology. Triple negative cancers are typically much more aggressive, fast-growing, and don't respond to hormone therapy. Lucky me. I'm also BRCA1, which means it's in my genes to get cancer. She had an analogy she used that I still remember. She said it's like when you type text on a computer. If you make a mistake, you can hit the backspace key and fix the mistake. But DNA doesn't work that way. The DNA that carries the BRCA1 mutation in my body is just going to continue to replicate the mistake. No backspace key for me.
Also, all of my cancers have been what they call "new primaries". This means that they are not metastasis from previous cancers but brand new ones - and different types every time. The surgeon said the only way to minimize the effect of the BRCA1 mutation is to take away the breasts. They can't control anything but that. And, no, it's not a guarantee even if you do it. The cancer can show up in the scars. But the risks become much much lower if you take away the tissue where that mutation likes to show up. Okey dokey, then. Didn't seem like much of a choice to me. My only choice was whether to put new ones on when they take the old ones away. Oh, and whether I was willing to allow the tissue (that would be my breasts) to be used for research purposes. I signed a bunch of papers agreeing to that. After all, I wouldn't be needing them anymore. Someone else might as well get some use out of them.
The appointment to talk to a plastic surgeon was set for Friday with the promise of surgery the next week or the week after that. I felt like I'd been hit by a semi and was lying flattened on the road, just like Wile E. Coyote, except he always bounced right back up. The ride home, with Mike and I in separate cars, was the longest one of my life. I just kept thinking: "I just want to get home; please just let me get home." Did I mention that the surgeon's office is clear on the opposite side of the city from where we live? It was a long long drive, alone, and I had no idea how Mike might be doing.
Just the other day, many compliments later, I finally removed the nail polish from my pedicure. It occurred to me that I might have kept it on so long because it represented the time BEFORE: before Cancer #3, before my chest became as flat as a man's, before I took a step that would launch me into a different way of thinking about my body and my life. As I removed the polish, I felt like I was removing pieces of myself.
I guess I'm getting ahead of myself, though. I'll admit that things went awfully fast, and I don't think I've caught my breath at all yet - but let me back up a bit. Mike and I drove home from Morro Bay on the last Sunday of Spring Break. We spent the Saturday after hearing the news pretending that we hadn't heard anything. Sunday was a long drive home and a full work week to start immediately on Monday. My doctor had told me she would send the surgeon she recommended an email asking for an appointment on my behalf. We expected something later in the week. I had a morning class, co-taught with a friend, and attended that. I got back to my desk to a message from the surgeon's office: could we make an appointment that afternoon? Yikes. Mike wasn't even on campus and so would have to meet me there.
When I got to the office, Mike was already there. I filled out all that irritating standard paperwork that makes you wonder what the point of it is. They already know my phone number because they called me. The system is the same as for my medical oncologist, so it's perfectly well available already. It makes me grind my teeth. I remember during Cancer #2 writing in silly things just to see if they noticed, something to do with a daily intake of chocolate. No one ever said a word.
The new surgeon impressed us both as being utterly brilliant but also as someone trying very hard to have a comforting bedside manner that isn't the norm for her - as if she read a manual on how to do it and was determined to make it work. To me, it made her even stiffer, but that was okay. She didn't need to hold my hand or hug me; she just needed to be good at her job. And I truly do think she has a good heart. She reviewed the pathology from the biopsy with us and basically said she just didn't think a lumpectomy was on the table this time. She said that if I opted for anything other than a bilateral mastectomy, she would worry about me. My cases have always been what they now call "triple negative", which has to do with various tumor markers they check in the pathology. Triple negative cancers are typically much more aggressive, fast-growing, and don't respond to hormone therapy. Lucky me. I'm also BRCA1, which means it's in my genes to get cancer. She had an analogy she used that I still remember. She said it's like when you type text on a computer. If you make a mistake, you can hit the backspace key and fix the mistake. But DNA doesn't work that way. The DNA that carries the BRCA1 mutation in my body is just going to continue to replicate the mistake. No backspace key for me.
Also, all of my cancers have been what they call "new primaries". This means that they are not metastasis from previous cancers but brand new ones - and different types every time. The surgeon said the only way to minimize the effect of the BRCA1 mutation is to take away the breasts. They can't control anything but that. And, no, it's not a guarantee even if you do it. The cancer can show up in the scars. But the risks become much much lower if you take away the tissue where that mutation likes to show up. Okey dokey, then. Didn't seem like much of a choice to me. My only choice was whether to put new ones on when they take the old ones away. Oh, and whether I was willing to allow the tissue (that would be my breasts) to be used for research purposes. I signed a bunch of papers agreeing to that. After all, I wouldn't be needing them anymore. Someone else might as well get some use out of them.
The appointment to talk to a plastic surgeon was set for Friday with the promise of surgery the next week or the week after that. I felt like I'd been hit by a semi and was lying flattened on the road, just like Wile E. Coyote, except he always bounced right back up. The ride home, with Mike and I in separate cars, was the longest one of my life. I just kept thinking: "I just want to get home; please just let me get home." Did I mention that the surgeon's office is clear on the opposite side of the city from where we live? It was a long long drive, alone, and I had no idea how Mike might be doing.
Just the other day, many compliments later, I finally removed the nail polish from my pedicure. It occurred to me that I might have kept it on so long because it represented the time BEFORE: before Cancer #3, before my chest became as flat as a man's, before I took a step that would launch me into a different way of thinking about my body and my life. As I removed the polish, I felt like I was removing pieces of myself.
Thursday, May 24, 2012
Rewind
Of course the dinner in Morro Bay was not the beginning of this latest journey. It started much like a snowball before it rolls down hill. One minute all is well and the next someone has smacked you upside the head with a snowball. All else being equal, the snowball may sting for a minute but then it melts - unless of course it's made of wet snow and ice. This one was and, instead of melting, it picked me up and rolled me down hill with it. I think I'm still rolling.
Because of my cancer history, I get two screenings per year. I had had an MRI in August 2011 and it came back fine. In February, I had my regularly-scheduled mammogram. I set the appointment for a Wednesday morning so there would be plenty of time to prep for and make it to my two o'clock class. When you have my history, the technicians and doctors like to let you know your results before you leave - the idea being that you won't have the worry of waiting for a letter in the mail. They put you in a little "post-mammogram" waiting room while the doctor reads your images. I was there only a short time when the tech came in and told me they needed more scans; I didn't immediately panic because this has happened once or twice before. It wasn't until she said they needed to get my doctor's approval for a different kind of image that I started to get nervous. She wondered if I could wait in order to get everything done that day, and I told her I could stay for another little while but would then have to go to work.
In the little waiting room with me there was another woman. She was clearly distressed and after a few minutes, she made a cell-phone call to a loved one in which she said she was scared and feeling alone. When she hung up, I asked her if she wanted to talk or needed help, but she said "no". A few minutes later, a tech came in and took the woman to another room. I heard the tech say that her mammogram was fine and the woman's relief was as tangible as the chair I was sitting on.
I was now alone in the waiting room. After 30 minutes or so, the tech came back to say that they were having trouble reaching my doctor for approval. At this point, I texted Mike. His response was that it was probably some bit of scar tissue from previous surgeries. I knew this wasn't so, as well as I knew that this was his way of keeping things light. The doctors that read the images had all my previous scans so they know where the scar tissue is. Whatever they needed to see more of, I was certain it wasn't that. After another half hour, the tech came back to say they'd gotten approval but were also running way behind. She said they'd try to squeeze me in as quickly as possible. After another 40 minutes, I couldn't stand to wait any longer. Something that I thought would take an hour at most was now creeping into the two-hour-and- then-some range. I was worried about prepping my class, and restless from the whole set of circumstances. I told them I needed to leave and that I would make an appointment for the following Wednesday to get the additional images. I traded my class and my work for another week's wait. It also gave me another week of denial. I stopped at a bakery on the way to work and got a croissant and a slice of chocolate cake. I never ate the cake.
The following Wednesday, back I went. There were some administrative glitches when I got there; it seemed they didn't know why I was there.The snowball was clearly still rolling me along. After I reminded them that they had, in fact, requested additional scans, they took me back and did an ultrasound, too. Whatever they were seeing on the mammogram, they could not find by ultrasound. I thought maybe the snowball was about to melt until they called the doctor who reads the scans in and she directed the ultrasound herself. Although they found nothing, she told me to get dressed as she wanted me to see the images for myself. Her office was dark so the scans showed up clearly. She showed me the scans from the past two years alongside the current ones. There was definitely something there that hadn't been there before. She said it was tiny but very obvious. It looked obvious to me, too. She recommended another MRI and regardless of those results, an ultrasound-guided biopsy. I called Mike from the car and gave him the news. I was scared. I think he was, too.
Overall, the process took something like a month from the first mammogram to that day in Morro Bay. The MRI showed the same suspicious blip. This is when I started to feel really out of control, as if my roll down hill would never end. The MRI in August showed nothing, so whatever was there now grew big enough in that short time to be seen on a mammogram. We scheduled the doctor who read the initial mammograms to do the biopsy she recommended. I was unsure about this, though. I wondered how they were going to do this biopsy via ultrasound if they were unable to find it that way before. This time, Mike came with me. I changed into a gown and the nurse explained the entire procedure to us. The doctor came in and introduced herself to Mike and the next thing she says is, "I don't know why you're here. I don't think we can do it this way.". I wondered why I was half-naked, sitting in front of her prepped and ready before it occurred to her to question the success of the procedure that she herself had recommended. Needless to say, I was not happy. Mike was not happy. I can't remember whether Mike asked to see the scans or whether the doctor offered to show him. After his first look, he walked away before he could look again and ask the doctor questions. Clearly not scar tissue.
In the end, they tried to do it but failed. This was the Wednesday before Spring Break, three weeks after my initial appointment. We planned to leave town on Thursday night for our annual Cambria getaway and I was devastated at the thought that we had to either give up our vacation or wait another week or more for the biopsy, let alone the results. After hearing of this fiasco, my oncologist moved mountains to get me a biopsy at a different place that Friday. We canceled Thursday night's hotel and packed our bags with one less change of clothes. Friday morning, they did the biopsy by ultrasound. Go figure. The new doctor had no trouble finding the blip; he said as it was so small, he was going to try to get it all out with the needle. I didn't look. It took very little time - so short for something so momentous to us. When I left, the nurse (who held my hand during the procedure) told me that I would need to put ice packs on the biopsy site every hour for the next 8 hours. They gave me a few cold packs but it wouldn't be enough. We stopped at CVS on our way out of town and got more. I faithfully changed them out as we drove to California, trying to look only at the horizon instead of at what might be around the next bend in the road.
Because of my cancer history, I get two screenings per year. I had had an MRI in August 2011 and it came back fine. In February, I had my regularly-scheduled mammogram. I set the appointment for a Wednesday morning so there would be plenty of time to prep for and make it to my two o'clock class. When you have my history, the technicians and doctors like to let you know your results before you leave - the idea being that you won't have the worry of waiting for a letter in the mail. They put you in a little "post-mammogram" waiting room while the doctor reads your images. I was there only a short time when the tech came in and told me they needed more scans; I didn't immediately panic because this has happened once or twice before. It wasn't until she said they needed to get my doctor's approval for a different kind of image that I started to get nervous. She wondered if I could wait in order to get everything done that day, and I told her I could stay for another little while but would then have to go to work.
In the little waiting room with me there was another woman. She was clearly distressed and after a few minutes, she made a cell-phone call to a loved one in which she said she was scared and feeling alone. When she hung up, I asked her if she wanted to talk or needed help, but she said "no". A few minutes later, a tech came in and took the woman to another room. I heard the tech say that her mammogram was fine and the woman's relief was as tangible as the chair I was sitting on.
I was now alone in the waiting room. After 30 minutes or so, the tech came back to say that they were having trouble reaching my doctor for approval. At this point, I texted Mike. His response was that it was probably some bit of scar tissue from previous surgeries. I knew this wasn't so, as well as I knew that this was his way of keeping things light. The doctors that read the images had all my previous scans so they know where the scar tissue is. Whatever they needed to see more of, I was certain it wasn't that. After another half hour, the tech came back to say they'd gotten approval but were also running way behind. She said they'd try to squeeze me in as quickly as possible. After another 40 minutes, I couldn't stand to wait any longer. Something that I thought would take an hour at most was now creeping into the two-hour-and- then-some range. I was worried about prepping my class, and restless from the whole set of circumstances. I told them I needed to leave and that I would make an appointment for the following Wednesday to get the additional images. I traded my class and my work for another week's wait. It also gave me another week of denial. I stopped at a bakery on the way to work and got a croissant and a slice of chocolate cake. I never ate the cake.
The following Wednesday, back I went. There were some administrative glitches when I got there; it seemed they didn't know why I was there.The snowball was clearly still rolling me along. After I reminded them that they had, in fact, requested additional scans, they took me back and did an ultrasound, too. Whatever they were seeing on the mammogram, they could not find by ultrasound. I thought maybe the snowball was about to melt until they called the doctor who reads the scans in and she directed the ultrasound herself. Although they found nothing, she told me to get dressed as she wanted me to see the images for myself. Her office was dark so the scans showed up clearly. She showed me the scans from the past two years alongside the current ones. There was definitely something there that hadn't been there before. She said it was tiny but very obvious. It looked obvious to me, too. She recommended another MRI and regardless of those results, an ultrasound-guided biopsy. I called Mike from the car and gave him the news. I was scared. I think he was, too.
Overall, the process took something like a month from the first mammogram to that day in Morro Bay. The MRI showed the same suspicious blip. This is when I started to feel really out of control, as if my roll down hill would never end. The MRI in August showed nothing, so whatever was there now grew big enough in that short time to be seen on a mammogram. We scheduled the doctor who read the initial mammograms to do the biopsy she recommended. I was unsure about this, though. I wondered how they were going to do this biopsy via ultrasound if they were unable to find it that way before. This time, Mike came with me. I changed into a gown and the nurse explained the entire procedure to us. The doctor came in and introduced herself to Mike and the next thing she says is, "I don't know why you're here. I don't think we can do it this way.". I wondered why I was half-naked, sitting in front of her prepped and ready before it occurred to her to question the success of the procedure that she herself had recommended. Needless to say, I was not happy. Mike was not happy. I can't remember whether Mike asked to see the scans or whether the doctor offered to show him. After his first look, he walked away before he could look again and ask the doctor questions. Clearly not scar tissue.
In the end, they tried to do it but failed. This was the Wednesday before Spring Break, three weeks after my initial appointment. We planned to leave town on Thursday night for our annual Cambria getaway and I was devastated at the thought that we had to either give up our vacation or wait another week or more for the biopsy, let alone the results. After hearing of this fiasco, my oncologist moved mountains to get me a biopsy at a different place that Friday. We canceled Thursday night's hotel and packed our bags with one less change of clothes. Friday morning, they did the biopsy by ultrasound. Go figure. The new doctor had no trouble finding the blip; he said as it was so small, he was going to try to get it all out with the needle. I didn't look. It took very little time - so short for something so momentous to us. When I left, the nurse (who held my hand during the procedure) told me that I would need to put ice packs on the biopsy site every hour for the next 8 hours. They gave me a few cold packs but it wouldn't be enough. We stopped at CVS on our way out of town and got more. I faithfully changed them out as we drove to California, trying to look only at the horizon instead of at what might be around the next bend in the road.
Tuesday, May 22, 2012
Finding out about Cancer #3
In my life, I believe I have discovered two things that will always be true for me. Truth #1: I will never be photogenic. I will always look as if I am eating or have food in my mouth. This is true regardless of whether I actually have been eating. In fact, knowing this, I have often taken great pains whenever anyone looks like they are taking a picture of me to make sure I will not look as if I am eating. Still, the picture shows up on Facebook or in someone's photo gallery - and sure enough, I look as if my mouth is full. I am convinced I have my own personal gremlin that sneaks around in everyone's cameras to make this happen. I have no other explanation.
Truth #2: I will always hear that I have cancer while eating out. For Cancer #1, I think I was eating lunch out with Mike in Tempe (where I was teaching at ASU for the year). I could be making this up, though, because that was 12 years ago. For Cancer #2, I was with Mike and Joe at Ra Sushi (this was 5 years ago; Joe was home for the holidays and he loves sushi). Just prior to the phone call, I was debating whether to get a chocolate martini and leaning towards "no". After the phone call, Joe said: "You should have a drink". I followed his excellent advice. For Cancer # 3, Mike and I were in Morro Bay, CA, where we we spent the last two days of our Spring Break. This was our first night there and we decided to have a late lunch/early dinner. It was foggy and rainy but just right for otter-viewing and pleasant for Tucsonans used to the sun all the time. This phone call was not a surprise. We were waiting for the news - except not right then. I forget the name of the restaurant, but it was a local fish house run by an actual fisherman. Each table had the picture of one of the fisherman who supplied the fish for the restaurant along with pictures of their boats, families, etc. It was a really nice touch and we enjoyed looking at them.
We didn't know if we were hungry enough for a full meal so we just ordered appetizers. Mike got chowder and I got some steamed clams to share. When the clams came, there were only about 5 or 6 - not enough to fill us up. We ordered a fish-n-chips to share. The call came just before the fish arrived. I could tell the news was bad simply from the way my doctor said "hi". I think I started trembling immediately. I took the phone outside in the rain - leaving Mike to wait for the food - while my doctor explained the results of the biopsy. Not good. Scary. I was pacing and trembling, trying to stay dry, and at one point, I realized I was dizzy and thought I might pass out or throw up or both. I have never fainted before but there is a first time for everything, and I think if I had, I would have had a good excuse. I don't remember a lot of the call except being distressed that my surgeon for the prior two had retired; knowing that I would not be able to have the solace of his extraordinary care and the kindness and solicitude he showed to Mike and I throughout his 11 years of watching over me was causing extra panic. I also remember asking what the timeline was because we were in the middle of the semester and I was teaching 3.5 courses. I was hoping my doctor would agree to wait on treatment, as they had in the prior two. She said instead: "Absolutely not." I think that might have been the point at which I thought I might throw up. She said she would call the new surgeon and request an appointment for me as soon as possible. She said the surgery would happen in one or two weeks and that she recommended a bilateral mastectomy. I hung up, slightly damp, and definitely wanting to throw up.
The food had arrived while I was outside and Mike was eating when I got back to our table. He reached for my hands as I sat down and I gave him the details. Tears came then but because we were in a public place, I did my best to suck it up and wipe them quickly away. Mike, clearly upset himself, encouraged me to eat but I just couldn't do it. (A pox on you, cancer! Why do you always interrupt a nice meal?!) In the end, I just couldn't stick it out in the restaurant any longer so Mike suggested I wait outside while he took care of the bill. We walked back to our inn in the rain, holding hands. I don't recall we said much. We were too sad and upset.
When we got back to the inn, we knew we would have to tell our families, who had been waiting for these results right along with us. This is one of the hardest things to do - call people you love and upset them. The silver lining in all of this is that they love you back. They support you, they offer to help, they listen to you, sometimes they cry with you. We held hands during these calls.
The other piece of the silver lining in this case is that our room in the inn was actually out over the bay. This meant we had an excellent, albeit rain-smudged, view of a pile of seals sleeping on a dock built in the middle of the bay just for that purpose - also otters swimming by and various seabirds. I thought, well, this could be worse.
We spent the rest of the evening trying to pretend it was just another evening, part of a lovely vacation in which we had no other cares but to rest and relax. We slept side-by-side, listening to the rain and the seals.
Truth #2: I will always hear that I have cancer while eating out. For Cancer #1, I think I was eating lunch out with Mike in Tempe (where I was teaching at ASU for the year). I could be making this up, though, because that was 12 years ago. For Cancer #2, I was with Mike and Joe at Ra Sushi (this was 5 years ago; Joe was home for the holidays and he loves sushi). Just prior to the phone call, I was debating whether to get a chocolate martini and leaning towards "no". After the phone call, Joe said: "You should have a drink". I followed his excellent advice. For Cancer # 3, Mike and I were in Morro Bay, CA, where we we spent the last two days of our Spring Break. This was our first night there and we decided to have a late lunch/early dinner. It was foggy and rainy but just right for otter-viewing and pleasant for Tucsonans used to the sun all the time. This phone call was not a surprise. We were waiting for the news - except not right then. I forget the name of the restaurant, but it was a local fish house run by an actual fisherman. Each table had the picture of one of the fisherman who supplied the fish for the restaurant along with pictures of their boats, families, etc. It was a really nice touch and we enjoyed looking at them.
We didn't know if we were hungry enough for a full meal so we just ordered appetizers. Mike got chowder and I got some steamed clams to share. When the clams came, there were only about 5 or 6 - not enough to fill us up. We ordered a fish-n-chips to share. The call came just before the fish arrived. I could tell the news was bad simply from the way my doctor said "hi". I think I started trembling immediately. I took the phone outside in the rain - leaving Mike to wait for the food - while my doctor explained the results of the biopsy. Not good. Scary. I was pacing and trembling, trying to stay dry, and at one point, I realized I was dizzy and thought I might pass out or throw up or both. I have never fainted before but there is a first time for everything, and I think if I had, I would have had a good excuse. I don't remember a lot of the call except being distressed that my surgeon for the prior two had retired; knowing that I would not be able to have the solace of his extraordinary care and the kindness and solicitude he showed to Mike and I throughout his 11 years of watching over me was causing extra panic. I also remember asking what the timeline was because we were in the middle of the semester and I was teaching 3.5 courses. I was hoping my doctor would agree to wait on treatment, as they had in the prior two. She said instead: "Absolutely not." I think that might have been the point at which I thought I might throw up. She said she would call the new surgeon and request an appointment for me as soon as possible. She said the surgery would happen in one or two weeks and that she recommended a bilateral mastectomy. I hung up, slightly damp, and definitely wanting to throw up.
The food had arrived while I was outside and Mike was eating when I got back to our table. He reached for my hands as I sat down and I gave him the details. Tears came then but because we were in a public place, I did my best to suck it up and wipe them quickly away. Mike, clearly upset himself, encouraged me to eat but I just couldn't do it. (A pox on you, cancer! Why do you always interrupt a nice meal?!) In the end, I just couldn't stick it out in the restaurant any longer so Mike suggested I wait outside while he took care of the bill. We walked back to our inn in the rain, holding hands. I don't recall we said much. We were too sad and upset.
When we got back to the inn, we knew we would have to tell our families, who had been waiting for these results right along with us. This is one of the hardest things to do - call people you love and upset them. The silver lining in all of this is that they love you back. They support you, they offer to help, they listen to you, sometimes they cry with you. We held hands during these calls.
The other piece of the silver lining in this case is that our room in the inn was actually out over the bay. This meant we had an excellent, albeit rain-smudged, view of a pile of seals sleeping on a dock built in the middle of the bay just for that purpose - also otters swimming by and various seabirds. I thought, well, this could be worse.We spent the rest of the evening trying to pretend it was just another evening, part of a lovely vacation in which we had no other cares but to rest and relax. We slept side-by-side, listening to the rain and the seals.
Monday, June 8, 2009
From Venice to Florence
Another quick post from an internet cafe. We've now gone to Venice twice from Ferrara by train. The ride is actually quite scenic, at least to me, who's never seen the Italian country-side. Up til yesterday, we hadn't really left Ferrara much because in addition to me not feeling well, Joey got the flu and was up all night with it. It hasn't been good karma health-wise. And one thing they don't tell you about is that it is mosquito-city here. I am covered in welts from blood-sucking bugs! Bring bug spray if you come here :)
Now we are in Florence, just arrived, and about to set off exploring. Just waiting for Mike to finish up his email. Tomorrow we have appointments to see the David and also to go to the Uffizi. The train here was also very nice. Through the Tuscan hills.
The previous three days or so have been filled with little jaunts around Ferrara itself. It is an interesting little city. I'll have to write more about its history some other time. Ciao!
Thursday, June 4, 2009
Buon Giorno
Just a quick post from Ferrara, where I am sitting in an internet cafe. We got here on Monday with no trouble after meeting up with Mike's mom in Bologna. I now have both an upset tummy and a cold (or am extremely allergic to Italy), but altogether I am doing better than I was. The town itself is small and no one speaks English hardly at all. But that gives a more genuine experience and we are enjoying it. The part of Ferrara where we are staying dates back to the 14th century with very narrow streets and lots of archways. We have a tiny one bedroom apartment in this older quarter.
Yesterday we took the train to Venice and that was as lovely and magnificent as you would think it. I'll have to write more later as our time is up.
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