November 26, 2008. Today is my mother's birthday. The day is a marker now, as another year has passed without her at the other end of the phone, her melodic voice dancing across the wire.
Our voices are the same. As a teen it was funny how many of her friends launched into phone conversations with me before my giggle alerted them to the fact that they had the daughter, not the woman. Now when I want to hear her voice I can comfort myself by talking, using her cadence, phrases and sighs. What I can't do is replicate her singing voice. Standing next to her at Mass I would feel warmth flow down through my body as I listened to that voice resonating with deep timbre. When a song ended I would look up at her and silently wish, "Please don't stop." Maybe I continued attending Mass to hear her voice; I know that the chords of certain hymns will bring me to tears. Somewhere, imprinted in my heart, she's singing to me.
Mom was only 67 when she died. The cancer was diagnosed mere months after my dad died — from cancer — and she went from a relatively good prognosis at Stage I to spine and brain mets within two years. When I discovered that I, too, had breast cancer I was not surprised. Her father had been diagnosed with breast cancer and later died from prostate cancer. It was a matter of when, not if my turn would come. I did think I'd have more time, though.
By some weird coincidence today is also the day I went to the oncologist to talk about several falls I've had and can't really explain away. Back pain, aching ribs. Headaches when I rarely get them. It's the first time I've gone to the oncologist out of fear. Agent of Doom #2 says he doesn't think the symptoms are cancer-related but he wants to reassure me and in oncology that's with a brain MRI. The date for that test happens to be the day before the anniversary of my mom's passing. Symmetry. I find comfort in that.
Only twelve years ago I was holding her hand, telling her in the voice we shared to go, to find peace, hoping she could hear me through the morphine haze. My brother had finally fallen asleep in the hospice bed a few feet away, and my sister had just gone into the bathroom when the labored breathing stopped. While I waited for her to take another breath I held my own. How could she bear any more? Yet I wanted her to open her eyes and be my mom again. I remember the mix of raw emotions flooding through me as I realized my mother had taken her last breath in my presence. By the time I told my brother and sister what had happened I felt the whirl of grief being replaced with sweetness and calm, like the sound of her voice on Sunday morning.
You went first, Mom, and I learned a few things about advocating for the patient. Now the patient is me and I'm doing my best to get the right care, the right tests, the right docs. Thank you for taking some of the fear away.
Love to you, always.
Hedgie
Wednesday, November 26, 2008
Sunday, October 19, 2008
One More Dip into the O.R. Pool
All is well in post-surgery land. I've learned my lesson and will not take any body-altering procedure lightly in the future. Maybe now I care because for the first time since knowing I would lose my breasts I feel that I've reclaimed me. Yeah, I have those funny scars, numbness here and there, scar tissue too. But I am soft and it is all me. Everything, scars included, is me. I would like to make them look "real" because they are very real to me.
Onward we march to the next oncology visit... in six months. I visited Dr. A last week, without crying, and graduated to the new six month regimen. Doc did not give me grief about my having stopped Arimidex and all endocrine therapies. I asked if he thought I was being foolish and he said no, he thought I recognized and accepted the risk just as any ball player accepts the risks of the game. (Not sure I quite got the analogy there but hey, beats being dismissed as a whacko.) He did say he had never seen me look better and that I was obviously at peace with my decision. Dr. A even apologized for the tough time I had working with the doctors there and he hoped they would do a better job of supporting me in the future. Although, when I discussed the changes I had been making in place of the Arimidex, aka "my program" he didn't really add anything. This occurred to me this morning as I was taking a shower. I do some of my best "ohmygod" thinking under warm water sprays. Dr. S in San Francisco, a previous consult, mentioned that if I couldn't tolerate the AIs he'd recommend a program to replace endocrine therapy. Adding "phone Dr. S for that plan" to my weekly call list.
What am I missing? That's been my private nag since childhood when I spent more time in the world of the book I was holding than in the world I was living in. Of course these days it feels like the stakes are pretty high. Instead of having to take some unnecessary science classes in college because I didn't realize I had "clepped" out of the requirement I might actually die a little sooner because I'm not pursuing the right treatment, or seeing the best docs.
One day very soon this blog will be cancer-free, all the time. Really. Most of my life is lived beyond the diagnosis. This little corner of cyberspace is the last place where I can dump the cancer crap and walk away.
Next post, see Hedgie laugh.
Onward we march to the next oncology visit... in six months. I visited Dr. A last week, without crying, and graduated to the new six month regimen. Doc did not give me grief about my having stopped Arimidex and all endocrine therapies. I asked if he thought I was being foolish and he said no, he thought I recognized and accepted the risk just as any ball player accepts the risks of the game. (Not sure I quite got the analogy there but hey, beats being dismissed as a whacko.) He did say he had never seen me look better and that I was obviously at peace with my decision. Dr. A even apologized for the tough time I had working with the doctors there and he hoped they would do a better job of supporting me in the future. Although, when I discussed the changes I had been making in place of the Arimidex, aka "my program" he didn't really add anything. This occurred to me this morning as I was taking a shower. I do some of my best "ohmygod" thinking under warm water sprays. Dr. S in San Francisco, a previous consult, mentioned that if I couldn't tolerate the AIs he'd recommend a program to replace endocrine therapy. Adding "phone Dr. S for that plan" to my weekly call list.
What am I missing? That's been my private nag since childhood when I spent more time in the world of the book I was holding than in the world I was living in. Of course these days it feels like the stakes are pretty high. Instead of having to take some unnecessary science classes in college because I didn't realize I had "clepped" out of the requirement I might actually die a little sooner because I'm not pursuing the right treatment, or seeing the best docs.
One day very soon this blog will be cancer-free, all the time. Really. Most of my life is lived beyond the diagnosis. This little corner of cyberspace is the last place where I can dump the cancer crap and walk away.
Next post, see Hedgie laugh.
Thursday, October 2, 2008
Back to Bed, Hedgie
Tuesday was Drain Removal Day. At least, I wanted it so much that I maybe fudged the truth a bit about my output in order to squeak under the "removal maximum" number. Children, never lie to your plastic surgeon. No one suffers but you.
Seromas happen when fluid fills a vacuum inside the body. It is a serious side effect of surgical procedures. Drains prevent seromas by letting the natural draining of blood and really gross liquid and not-so-liquid matter take the fast track outta Dodge. Taking out drains too early means all that fluid pools up somewhere. See where I'm going with this? Even my lovely, biker-type Spanx, the 24-hour-designer-wear prescribed by plastic surgeons following tummy surgeries, couldn't squash the buildup. A solid mass starting poofing out my belly yesterday. Remedy? More NOTHING! Check-in with PS tomorrow, then a real visit on Monday to make sure I haven't done more damage to his work I suppose. Meanwhile I'm trying to get in to the acupuncturist for her help on getting things flowing.
I do believe that the name "Spanx" should be changed to something more descriptive of the product's effect on one's body. So far I've come up with "Sausagettes" and "Poof-a-Roos."
Test Your BC Knowledge and Donate a Buck to Komen
Here's a simple way to contribute a dollar to the cause. You can even do so in honor of someone you love. Mine went to my mom, who lost her life to breast cancer but not her spirit on December 12, 1996. See Purina Cat Chow Pink and do some good.
And last, but not least, that photo way up there is of Roscoe, our crazy Puppy Brain. At last count he's eaten or nibbled on a pair of scissors, the antennae to our cordless phone, rocks, homework folders, a slow-moving squirrel, library books, the back seat of the minivan, pencils and pens galore, several tennis balls, Lego pieces and Finn, a recently deceased goldfish buried under a potted plant. (Please don't tell the kids about Finn.) I'm sure there's more. We should have his stomach x-rayed but really, what's the point?
P.S. See the little "Followers of..." box on the left hand side of this page? I have a follower! You, too, can have your name listed there. Yes, all you devoted Hedgie readers. Oh, you're shy, are you? Well, just send me a note then. It'd be nice to hear from those of you who stop by, read my nattering and run off without a word.
Love to you,
Hedgie
Saturday, September 27, 2008
Just an Incredible Day
Lead with the best, or save it for last? Begin at the beginning or work back from the end? Devour dessert first or graze leisurely through the courses, savoring every bite? I'll label the parts of the day for you, friend, and you may choose.
Salad
Saturday. Not any Saturday, but a Saturday in late September. That means blue skies, warm breezes and a day long enough to pack in some adventure. Our destination was somewhat low-key (see entry on "doing nothing all weekend" below) yet decidedly fun: we were going to Moss Beach to visit the 3 Zero Cafe. It was a scouting trip to see if the location would be suitable for Gracie's upcoming 9th birthday celebration. The main party event will center on tide-pooling under the guidance of our marine biologist cousin Dean. Lunch for a half-dozen girls in a fun, coastside location? Tiny airports are entertaining, and they are famous for having yummy food. We had high expectations.
Puppy Boy Roscoe could not be left behind, however, despite his recent gnoshing on the van's rear seat. We decided to bring him along and try out the new canvas travel crate Danny and I spotted at PetSmart a few days ago. The crate would make the half-hour journey safe for dog, humans and van; once there, Joe and I figured we'd take turns eating while the other held the leash.
So, off we head, happy to be together. Roscoe was the least happy member until he settled down with a Smelly Bone. Now, traffic might have been thick on such a beautiful Saturday during High Pumpkin Season, being that Half Moon Bay is the land of all things pumpkin patchy. We guessed we lucked out because at least 500 million people must have been circling San Francisco trying to get into the opening of the California Academy of Sciences in Golden Gate Park. (See, there is some justice for having to take it easy and do almost nothing.)
Appetizer
When we arrived at 3 Zero Cafe I had a flash: what if that dog-loving coast had a dog-loving airport cafe? Before unloading the crew, I walked into the funky restaurant, through the lobby and out the back to the airport side where people were sitting at picnic tables. Sure enough, I spotted one dog under a table. Then, another. Yes! A dog patio! Joe and the kids, and I'm including Roscoe here, settled at a table while I checked in at the front. A thin layer of fog edged the hills around the airport as we watched planes take off and land. Roscoe took delight in his Nasty Bone, happy to be included in a human adventure. And we soon learned why the cafe has been rated, as the menu declared, best breakfast joint on the coast for some 10 years running. The chocolate milk arrived with thick whipped cream piled high; the orange juice was freshly squeezed and sporting seeds to prove it; french toast, fresh fruit, eggs and coffee did not disappoint. We spoke to the manager about having the birthday lunch there and it's a go.
Main Course
After convincing Roscoe to allow his puppyness to be recrated, we drove north to Poplar Beach, a coastal access point and entry to the bluffs. The trail stretches for miles along the coast, thanks to conservation efforts of many to snap up land and place it into trusts for recreation. I parked myself on a bench at the head of the trail, with a view of the ocean looking north along the coast. Ann Patchett's Run kept me great company while the rest of the family headed south for a Pup Walk. When I'm off nothing duty I'll return with Roscoe as this is one of our favorite walks.
As I'm reading, looking up now and then to check out a passing pooch or toddler, I'm conscious of an everywhere kind of happiness. This is normal. It isn't a big deal or a special thing we're doing. We're all taking for granted that we can have a Saturday together, as a family. The kids are down the trail but they'll be back and full of news about the horse poop that Roscoe ate and which dogs he seemed eager to chase. I'm resting but it isn't because I'm sick; I'm healing and will be back to full-speed in a week or so. I take note. I'm grateful. Life is so very sweet.
A familiar voice brings my head up. A young friend of Danny and Gracie's is on a bike riding with his parents. I call out to them. They come over, we talk about their new school, Roscoe, our breakfast at 3 Zero. How wonderful a day it has been, and the unexpected meeting anoints it.
Dessert
Back home, I am stretched on the sofa with my novel, doing more nothing. Joe has taken the kids to the new Redwood Shores Library for some down time. Just before 4:00 pm the phone rings and, letting it go to the machine, I hear my SIL Cory breathlessly announce that her daughter will be delivering her first child by emergency c-section in about 30 minutes. I make it to the phone in time to catch her, telling her I'll be there. The baby is early but we knew he would be. He has made it to 35 weeks.
Hayden Miles entered the world safely today. He is only 2lbs, 13.5 ounces and 14 inches long. He is breathing without help, though; his lungs are okay. He is feisty, strong and incredibly beautiful in the way only new life can be. His mother is exhausted and recovering. She may wonder why her aunt insisted on hanging around the hospital, peering through the nursery glass and haunting the hallway.
Through the glass of the nursery my children saw their new cousin on the day of his birth. They saw him get his first bath from a neonatal nurse wielding a washcloth. They saw him hold his mom's hand. They celebrated his birthday with Lauren, Hayden's 7-year-old aunt (his mom's baby sister) over pizza at Toto's. While laughing and sipping lemonade we talked about what we would tell Hayden about the day he was born. Driving back to the hospital, we stopped at Shaw's candy store so we could bring back chocolate cigars for new father Owen.
After Dinner Mint
Being present. Bearing witness. Defining family and marking passage. These are the things we offer one another as proof of our love.
Amen. And wecome to the family, Hayden Miles.
Salad
Saturday. Not any Saturday, but a Saturday in late September. That means blue skies, warm breezes and a day long enough to pack in some adventure. Our destination was somewhat low-key (see entry on "doing nothing all weekend" below) yet decidedly fun: we were going to Moss Beach to visit the 3 Zero Cafe. It was a scouting trip to see if the location would be suitable for Gracie's upcoming 9th birthday celebration. The main party event will center on tide-pooling under the guidance of our marine biologist cousin Dean. Lunch for a half-dozen girls in a fun, coastside location? Tiny airports are entertaining, and they are famous for having yummy food. We had high expectations.
Puppy Boy Roscoe could not be left behind, however, despite his recent gnoshing on the van's rear seat. We decided to bring him along and try out the new canvas travel crate Danny and I spotted at PetSmart a few days ago. The crate would make the half-hour journey safe for dog, humans and van; once there, Joe and I figured we'd take turns eating while the other held the leash.
So, off we head, happy to be together. Roscoe was the least happy member until he settled down with a Smelly Bone. Now, traffic might have been thick on such a beautiful Saturday during High Pumpkin Season, being that Half Moon Bay is the land of all things pumpkin patchy. We guessed we lucked out because at least 500 million people must have been circling San Francisco trying to get into the opening of the California Academy of Sciences in Golden Gate Park. (See, there is some justice for having to take it easy and do almost nothing.)
Appetizer
When we arrived at 3 Zero Cafe I had a flash: what if that dog-loving coast had a dog-loving airport cafe? Before unloading the crew, I walked into the funky restaurant, through the lobby and out the back to the airport side where people were sitting at picnic tables. Sure enough, I spotted one dog under a table. Then, another. Yes! A dog patio! Joe and the kids, and I'm including Roscoe here, settled at a table while I checked in at the front. A thin layer of fog edged the hills around the airport as we watched planes take off and land. Roscoe took delight in his Nasty Bone, happy to be included in a human adventure. And we soon learned why the cafe has been rated, as the menu declared, best breakfast joint on the coast for some 10 years running. The chocolate milk arrived with thick whipped cream piled high; the orange juice was freshly squeezed and sporting seeds to prove it; french toast, fresh fruit, eggs and coffee did not disappoint. We spoke to the manager about having the birthday lunch there and it's a go.
Main Course
After convincing Roscoe to allow his puppyness to be recrated, we drove north to Poplar Beach, a coastal access point and entry to the bluffs. The trail stretches for miles along the coast, thanks to conservation efforts of many to snap up land and place it into trusts for recreation. I parked myself on a bench at the head of the trail, with a view of the ocean looking north along the coast. Ann Patchett's Run kept me great company while the rest of the family headed south for a Pup Walk. When I'm off nothing duty I'll return with Roscoe as this is one of our favorite walks.
As I'm reading, looking up now and then to check out a passing pooch or toddler, I'm conscious of an everywhere kind of happiness. This is normal. It isn't a big deal or a special thing we're doing. We're all taking for granted that we can have a Saturday together, as a family. The kids are down the trail but they'll be back and full of news about the horse poop that Roscoe ate and which dogs he seemed eager to chase. I'm resting but it isn't because I'm sick; I'm healing and will be back to full-speed in a week or so. I take note. I'm grateful. Life is so very sweet.
A familiar voice brings my head up. A young friend of Danny and Gracie's is on a bike riding with his parents. I call out to them. They come over, we talk about their new school, Roscoe, our breakfast at 3 Zero. How wonderful a day it has been, and the unexpected meeting anoints it.
Dessert
Back home, I am stretched on the sofa with my novel, doing more nothing. Joe has taken the kids to the new Redwood Shores Library for some down time. Just before 4:00 pm the phone rings and, letting it go to the machine, I hear my SIL Cory breathlessly announce that her daughter will be delivering her first child by emergency c-section in about 30 minutes. I make it to the phone in time to catch her, telling her I'll be there. The baby is early but we knew he would be. He has made it to 35 weeks.
Hayden Miles entered the world safely today. He is only 2lbs, 13.5 ounces and 14 inches long. He is breathing without help, though; his lungs are okay. He is feisty, strong and incredibly beautiful in the way only new life can be. His mother is exhausted and recovering. She may wonder why her aunt insisted on hanging around the hospital, peering through the nursery glass and haunting the hallway.
Through the glass of the nursery my children saw their new cousin on the day of his birth. They saw him get his first bath from a neonatal nurse wielding a washcloth. They saw him hold his mom's hand. They celebrated his birthday with Lauren, Hayden's 7-year-old aunt (his mom's baby sister) over pizza at Toto's. While laughing and sipping lemonade we talked about what we would tell Hayden about the day he was born. Driving back to the hospital, we stopped at Shaw's candy store so we could bring back chocolate cigars for new father Owen.
After Dinner Mint
Being present. Bearing witness. Defining family and marking passage. These are the things we offer one another as proof of our love.
Amen. And wecome to the family, Hayden Miles.
Friday, September 26, 2008
I've Been Revised
Tuesday was the last reconstruction surgery, known as The Revision. When having the DIEP the plastic surgeon mentions that within several months you will be having a second surgery, to "revise" the big deelybop surgery. It makes sense, really. The first surgery is all about moving mass to a new location. There are bound to be issues to address, nips to tuck, flops to flip. And so with me.
We scheduled the surgery to take advantage of the full school days, not realizing that there would be half days this week on account of Back to School night. Drat. SIL Sandy stepped in to help with childcare coverage, Joe took a few days off work, and I breezed through a 2 1/2 hour surgery and overnight recovery. Very little pain. Doc promised this would be the easiest of the scalpel sessions to date and he was right.
This time there were three drains. One was removed in the hospital and two are my constant buddies. For the uninitiated, drains are tubes attached to fairly large collection bulbs. They remove fluid from wounds to prevent seratomas. Patient activity increases fluid; the drains can be removed, in my case, when the collection level is less than 30 ml in 24 hours. This morning, the high bulb was 50 ml.
Nothing happens on a weekend. I'm sitting here, doing my best to do nothing, so my fluid level can decrease to the desired level by Monday. That's 3 1/2 days and many fun activities away. Did you know that the new California Academy of Sciences is opening tomorrow? And that there is a Pet Parade in Burlingame that Roscoe would love to attend? We want to check out the Three Zero Airport Cafe and the park in Half Moon Bay for Gracie's birthday party, too. Sigh. I think I may just have to read a few books instead. Wouldn't hurt to update this blog. Maybe get some photos in an album.
Or I could curl up for a nap until it's time to pick up the kids.
We scheduled the surgery to take advantage of the full school days, not realizing that there would be half days this week on account of Back to School night. Drat. SIL Sandy stepped in to help with childcare coverage, Joe took a few days off work, and I breezed through a 2 1/2 hour surgery and overnight recovery. Very little pain. Doc promised this would be the easiest of the scalpel sessions to date and he was right.
This time there were three drains. One was removed in the hospital and two are my constant buddies. For the uninitiated, drains are tubes attached to fairly large collection bulbs. They remove fluid from wounds to prevent seratomas. Patient activity increases fluid; the drains can be removed, in my case, when the collection level is less than 30 ml in 24 hours. This morning, the high bulb was 50 ml.
Nothing happens on a weekend. I'm sitting here, doing my best to do nothing, so my fluid level can decrease to the desired level by Monday. That's 3 1/2 days and many fun activities away. Did you know that the new California Academy of Sciences is opening tomorrow? And that there is a Pet Parade in Burlingame that Roscoe would love to attend? We want to check out the Three Zero Airport Cafe and the park in Half Moon Bay for Gracie's birthday party, too. Sigh. I think I may just have to read a few books instead. Wouldn't hurt to update this blog. Maybe get some photos in an album.
Or I could curl up for a nap until it's time to pick up the kids.
Tuesday, September 9, 2008
Not a Model Patient
Face it, we all want to be liked. When it comes to having a serious illness, we want our doctors to really like us. Would it be so bad if our surgeon or oncologist had a little daydream about our tumor and how they were going to annihilate it? Nope, nada. Dream on, docs. And we would love it if our doctors remembered the specifics of our cases without having to be corrected during appointments. "No, I can't have the drug to induce menopause; I had my ovaries removed last year, remember?" But I digress.
I'm not a model patient. I don't pretend to be "glass half full" when I really feel like I'm dragging around a load of concrete. I want to be listened to with respect when I speak even if I pause longer than normal to retrieve a word from a treatment-impaired brain. I want a treatment plan tailored to me, to my specific cancer state and characteristics. I reserve the right to decline a recommended course of treatment and do not expect disparaging looks or comments from the medical professionals involved in my care. And while I'm up here on my high horse I would really, really appreciate a helping hand back down to Mama Earth.
You see, I spoke to my Agent of Doom tonight. He's actually Doom #2, since Doom #1 proved to be more condescending than I could tolerate. I had to let her go. The current Agent is in the same practice, or "Cancer Center," because there are simply no other options short of changing my medical group. (HMO Blues, let me tell you. I could switch to Stanford or UCSF but would then have to travel 15 miles+ just to see a primary care doc.) ANYWAY, the Agent of Doom was calling to discuss my request to see a gynecologic oncologist for regular GYN care. I had a specific one, out of network, in mind. Even without ovaries I still need GYN exams, and it makes sense to me, at least, to see a specialist.
We spent a bit of time while I provided reasons to justify why I needed to see a specialist. This was for the benefit of the HMO, apparently. Agent #2 assumed the role of "processing clerk" which made me wonder, Does he really think he has to mollify me? Toss me a bone? There's nothing like defending my position to tweak my Bawling Babe gene. Instead of shedding tears I confessed: I stopped Arimidex. Would that be a good reason to see the specialist?
Silence. I imagined him cursing Agent #1 for palming off a cancer patient with a suicide wish. When he spoke it was to ask why I stopped the drug. I mentioned my hands, the all-over-body pain, a sense of diminishing health. In Bawling Babe mode, all my words sound lame, my reasoning foolish and irrational. (Ooh, that was another reason: I couldn't think on Arimidex.) I seem unable to muster the strength to say how much thought went into the decision, and how I am trying to replace the estrogen-suppression action of the drug with changes in nutrition, supplements, exercise and acupuncture. He doesn't pursue it or tell me, as he has in previous conversations, how rare my side-effects are, and I am spared the need to disagree. I feel plenty stupid anyhow, and definitely Not a Model Patient. I can almost hear his voice, a year or two from now, holding me responsible for a recurrence.
After our lovely chat I sat on the bedroom floor, in the midst of my clear-the-office-and-prepare-to-write project, snagged Nikko the fluffy gray feline and let loose with the tears. We need the Agents to be on our sides, to listen to us. Somewhere in this effing universe there must be a scientific study to prove that doctors who disapprove of their patients inflict damage far beyond the disease they are treating.
I'm not a model patient. I don't pretend to be "glass half full" when I really feel like I'm dragging around a load of concrete. I want to be listened to with respect when I speak even if I pause longer than normal to retrieve a word from a treatment-impaired brain. I want a treatment plan tailored to me, to my specific cancer state and characteristics. I reserve the right to decline a recommended course of treatment and do not expect disparaging looks or comments from the medical professionals involved in my care. And while I'm up here on my high horse I would really, really appreciate a helping hand back down to Mama Earth.
You see, I spoke to my Agent of Doom tonight. He's actually Doom #2, since Doom #1 proved to be more condescending than I could tolerate. I had to let her go. The current Agent is in the same practice, or "Cancer Center," because there are simply no other options short of changing my medical group. (HMO Blues, let me tell you. I could switch to Stanford or UCSF but would then have to travel 15 miles+ just to see a primary care doc.) ANYWAY, the Agent of Doom was calling to discuss my request to see a gynecologic oncologist for regular GYN care. I had a specific one, out of network, in mind. Even without ovaries I still need GYN exams, and it makes sense to me, at least, to see a specialist.
We spent a bit of time while I provided reasons to justify why I needed to see a specialist. This was for the benefit of the HMO, apparently. Agent #2 assumed the role of "processing clerk" which made me wonder, Does he really think he has to mollify me? Toss me a bone? There's nothing like defending my position to tweak my Bawling Babe gene. Instead of shedding tears I confessed: I stopped Arimidex. Would that be a good reason to see the specialist?
Silence. I imagined him cursing Agent #1 for palming off a cancer patient with a suicide wish. When he spoke it was to ask why I stopped the drug. I mentioned my hands, the all-over-body pain, a sense of diminishing health. In Bawling Babe mode, all my words sound lame, my reasoning foolish and irrational. (Ooh, that was another reason: I couldn't think on Arimidex.) I seem unable to muster the strength to say how much thought went into the decision, and how I am trying to replace the estrogen-suppression action of the drug with changes in nutrition, supplements, exercise and acupuncture. He doesn't pursue it or tell me, as he has in previous conversations, how rare my side-effects are, and I am spared the need to disagree. I feel plenty stupid anyhow, and definitely Not a Model Patient. I can almost hear his voice, a year or two from now, holding me responsible for a recurrence.
After our lovely chat I sat on the bedroom floor, in the midst of my clear-the-office-and-prepare-to-write project, snagged Nikko the fluffy gray feline and let loose with the tears. We need the Agents to be on our sides, to listen to us. Somewhere in this effing universe there must be a scientific study to prove that doctors who disapprove of their patients inflict damage far beyond the disease they are treating.
Saturday, September 6, 2008
Anywhere But Here
Clarity is a cancer byproduct. It's easy to see what's important, what doesn't fit anymore when the diagnosis first hits. Harder is making that clarity a companion on the road of daily life.
Here's what I do to keep the clarity muscle in shape. Say I'm at a social function. An acquaintance is rude, the event tiresome. I ask myself, "Would I rather be cleaning the toilet?" If that option is appealing, I make a graceful exit. I do not, however, go home and clean the toilet.
Lately I've been considering income opportunities. I flip-flopped the toilet question and started asking myself, "Would I rather be writing?" while imagining myself doing every conceivable job. So far writing is what has me leaving the party.
I have even come up with a kind of writing I believe I can earn money doing. A little more research and maybe I'll get started.
Here's what I do to keep the clarity muscle in shape. Say I'm at a social function. An acquaintance is rude, the event tiresome. I ask myself, "Would I rather be cleaning the toilet?" If that option is appealing, I make a graceful exit. I do not, however, go home and clean the toilet.
Lately I've been considering income opportunities. I flip-flopped the toilet question and started asking myself, "Would I rather be writing?" while imagining myself doing every conceivable job. So far writing is what has me leaving the party.
I have even come up with a kind of writing I believe I can earn money doing. A little more research and maybe I'll get started.
Friday, August 22, 2008
Good and Bad
We started a family dinner game a few years ago. Simple rules. Everyone takes a turn stating something "good" about their day and something "bad." No interruptions during another person's turn, and unless requested, no one may suggest the good or bad of another person's day. Today we added a new rule: one person's good cannot be at the expense of another. No insults, wisecracks or rude remarks.
The game has lasted while others have faded away. We don't play every night but frequently someone will call out in sing-song voice, "Good and Bad, Good and Bad" and Gracie or Dan will throw their hands in the air, eager to be the first to recite.
Let's see. The kids are asleep and no one really reads this blog anyway; I'll just come up with Hedgie's Good-and-Bad Part II. Today my Bad is that my husband and I realized how deep a hole we are in financially. My Good is that we talked to each other about it calmly and made a few plans. A good financial planner is at the top of the list, as is some help with our aging cat rescues; we simply cannot care for them any longer. And I do need a job. One more surgery next month, maybe get the energy and stamina back, stop the arthritis-like symptoms in my hands and I'm good to go.
Where?
The game has lasted while others have faded away. We don't play every night but frequently someone will call out in sing-song voice, "Good and Bad, Good and Bad" and Gracie or Dan will throw their hands in the air, eager to be the first to recite.
Let's see. The kids are asleep and no one really reads this blog anyway; I'll just come up with Hedgie's Good-and-Bad Part II. Today my Bad is that my husband and I realized how deep a hole we are in financially. My Good is that we talked to each other about it calmly and made a few plans. A good financial planner is at the top of the list, as is some help with our aging cat rescues; we simply cannot care for them any longer. And I do need a job. One more surgery next month, maybe get the energy and stamina back, stop the arthritis-like symptoms in my hands and I'm good to go.
Where?
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