It's not what you think. Forget the shoes, I'm paying homage to the women in the lingerie department. The ones trained as "fit experts" for travelers on the breast cancer express.
Twice I've made the journey to the third floor of the nearby mall for help with bras. The first time was shortly after the mastectomies when the plastic surgeon advised me to find a gentle compression bra to use while undergoing "expansion." Turns out I only used the little bandeau beauties (think elastic bands) for a month before surrendering to the bliss of camisoles and nothing-at-all, since there was little need for support of any kind. The memory I have from the Nordstrom fitter, certified and trained to be absolutely nonplussed in the presence of mutilated mammary glands, was how utterly professional and kind the woman was. No pity, no sadness. I felt petite, not flat-chested. She was gifted, that sales woman.
Today I decided it was time to support The Girls. Ms. Choy was my guide back to the new world I'm living in. She did not blink when my scarred skin was exposed. Instead, she found exactly the right fit for me. Pretty, feminine. Real bras. I'd forgotten what it was like to buy lingerie. Goodbye, camisoles, love you though I do.
Here's to Nordstom, the best place I know for women post-mastectomy to visit when looking for a little "lift."
Monday, April 28, 2008
Friday, April 25, 2008
She's Alive! A Little Pale, But Alive!
Wow, has it really been nearly three months since I've visited my own blogdom? Goes to show how out of it I've been. A little surgery/flu/sinusitis/bronchitis/exhaustion will do that to a gal. The immune system ain't what he used to be.
Just placed an order for a lymphedema gauntlet. What a fitting term for it. Throw down the gauntlet I will! Damn swelling has my left hand the size of a puffer fish in full puff. It's been a week and the pain is less now; I won't be able to see the lymphedema clinic folks until mid-May so I'm on my own. Between the lymphatic massage I was taught last time, the new sleeve I purchased this week and the gauntlet (to replace the Isotoner glove I was using for compression), plus acupuncture treatments, maybe I can get the swelling down somewhat. What caused it? Who knows. Stress of being ill, poor sleep. Maybe it was trying the new softball mitt out with the kids. Dang. I hope that wasn't it. A new low: "Cancer kills softball with the kids."
The DIEP surgery went very well, as did my recovery. Took a lot of steam out of me, obviously, but no serious complications. The result, or results, are okay. I still feel the pressure under the pectoral muscles but I guess that is no surprise. At least now there is softness on top, and hugs are squishy. There will be another surgery (a revision) but it should be minor, perhaps even outpatient. After that, nub creation. Last, but not least, tattoos! Thought this would involve a trip to a seedy tattoo parlour but a friend tells me she went to a woman who specializes in tattoos for BC reconstructions. Drat. Maybe she'll give me a hummingbird on my tush for free. Thinking about August or September for the revision...
I've come to realize this spring that I may have rushed into acting 100% before I was ready. There is a lot of unspoken pressure to be well, to participate in activities as though everything is normal. Heck, I want to be normal. I don't have the stamina to pull it off, though. My memory isn't there (ask the poor mom who carpools with me) and the energy to get through the day leaves before the sun does. I know that people are tired of hearing The Excuse. I'm beyond caring, most of the time anyway. What's difficult is being with new groups and feeling absolutely worthless as a contributing member. I know why my kids miss practices, or why we're late for games, or why I don't volunteer to toss the ball with the team. What's the etiquette for explaining to people that you're spacey because of chemo? Tired because you haven't recovered your stamina following cancer treatment? In pain with swelling due to lymph node dissection? Of course I don't want to whine about any of this but then what do I say? I'm lazy? I forgot? I don't like to play sports?
Where's the user manual for this part of the game?
Just placed an order for a lymphedema gauntlet. What a fitting term for it. Throw down the gauntlet I will! Damn swelling has my left hand the size of a puffer fish in full puff. It's been a week and the pain is less now; I won't be able to see the lymphedema clinic folks until mid-May so I'm on my own. Between the lymphatic massage I was taught last time, the new sleeve I purchased this week and the gauntlet (to replace the Isotoner glove I was using for compression), plus acupuncture treatments, maybe I can get the swelling down somewhat. What caused it? Who knows. Stress of being ill, poor sleep. Maybe it was trying the new softball mitt out with the kids. Dang. I hope that wasn't it. A new low: "Cancer kills softball with the kids."
The DIEP surgery went very well, as did my recovery. Took a lot of steam out of me, obviously, but no serious complications. The result, or results, are okay. I still feel the pressure under the pectoral muscles but I guess that is no surprise. At least now there is softness on top, and hugs are squishy. There will be another surgery (a revision) but it should be minor, perhaps even outpatient. After that, nub creation. Last, but not least, tattoos! Thought this would involve a trip to a seedy tattoo parlour but a friend tells me she went to a woman who specializes in tattoos for BC reconstructions. Drat. Maybe she'll give me a hummingbird on my tush for free. Thinking about August or September for the revision...
I've come to realize this spring that I may have rushed into acting 100% before I was ready. There is a lot of unspoken pressure to be well, to participate in activities as though everything is normal. Heck, I want to be normal. I don't have the stamina to pull it off, though. My memory isn't there (ask the poor mom who carpools with me) and the energy to get through the day leaves before the sun does. I know that people are tired of hearing The Excuse. I'm beyond caring, most of the time anyway. What's difficult is being with new groups and feeling absolutely worthless as a contributing member. I know why my kids miss practices, or why we're late for games, or why I don't volunteer to toss the ball with the team. What's the etiquette for explaining to people that you're spacey because of chemo? Tired because you haven't recovered your stamina following cancer treatment? In pain with swelling due to lymph node dissection? Of course I don't want to whine about any of this but then what do I say? I'm lazy? I forgot? I don't like to play sports?
Where's the user manual for this part of the game?
Friday, February 1, 2008
HMO Moves a Molehill for Me
Insurance companies have been known to be villains in medical dramas. Who hasn't spent hours chasing down referrals, checking the status of authorizations, filling out claims forms and punching their way through the voice mail menu at the customer "service" center? I've been a member of HealthNet HMO since 1988. I've jumped through hoops for them over the years but have always been able to receive coverage for the services needed. Okay, maybe a few exceptions but they've come through with the big items.
Today, it was the Medical Group that screwed up and pushed me to tears. HealthNet and most insurance companies get such a bad rap that I want to say they were the White Knights today. They made up the three weeks delay caused by the Medical Group in less than an hour, approving an out-of-network second-opinion visit to an oncologist of my choice for case and treatment review.
The Medical Group sent me a letter several weeks ago telling me they had faxed the information to HealthNet for review. When I followed up today, realizing that silence is never golden when it comes to insurance, I learned that the phone number listed in the letter connected me to the Alabama Department of Agriculture. Not HealthNet. (Off by one pretty important digit.) And the Medical Group had sent me the wrong form letter to begin with; I was supposed to get the one telling me follow up with HealthNet and get my own information faxed. Or something. End result: HealthNet had received nothing.
Well, the urgency to the matter is that on Monday morning at 10:00 I have the second opinion appointment. If it isn't preauthorized we're responsible for the $500. Maybe HealthNet would reimburse us, maybe not. On Wednesday we take the second opinion to the New Patient appointment with my new, improved Agent of Doom. These appointments all require supporting childcare, husband work rescheduling, records gathering. At 4:30 pm today it looked like the calls back and forth between the Medical Group and HealthNet would get me an answer by Wednesday of next week. Too little, waaay too late. Oh, that's all it took to get the tears flowing.
No one heard me crying. I pulled it together between phone calls. The customer service folks were actually kind, something I've noticed now that "oncology" shows up next to my requests. And when the HealthNet folks understood the issue they reviewed the request while I was on the phone and two of them gave me the news on a conference call. I mean, wipe me up off the floor and tuck me into bed.
I guess it says a lot about our health care system that getting a "yes" from an insurance company in a reasonable time frame, with respect and kindness shown to the individual, is news. Forget that I had to spend the day chasing the "yes" down. It is still a "yes" and one I am grateful to have received. Go, HealthNet. Be kind to the little cancer chicks.
Today, it was the Medical Group that screwed up and pushed me to tears. HealthNet and most insurance companies get such a bad rap that I want to say they were the White Knights today. They made up the three weeks delay caused by the Medical Group in less than an hour, approving an out-of-network second-opinion visit to an oncologist of my choice for case and treatment review.
The Medical Group sent me a letter several weeks ago telling me they had faxed the information to HealthNet for review. When I followed up today, realizing that silence is never golden when it comes to insurance, I learned that the phone number listed in the letter connected me to the Alabama Department of Agriculture. Not HealthNet. (Off by one pretty important digit.) And the Medical Group had sent me the wrong form letter to begin with; I was supposed to get the one telling me follow up with HealthNet and get my own information faxed. Or something. End result: HealthNet had received nothing.
Well, the urgency to the matter is that on Monday morning at 10:00 I have the second opinion appointment. If it isn't preauthorized we're responsible for the $500. Maybe HealthNet would reimburse us, maybe not. On Wednesday we take the second opinion to the New Patient appointment with my new, improved Agent of Doom. These appointments all require supporting childcare, husband work rescheduling, records gathering. At 4:30 pm today it looked like the calls back and forth between the Medical Group and HealthNet would get me an answer by Wednesday of next week. Too little, waaay too late. Oh, that's all it took to get the tears flowing.
No one heard me crying. I pulled it together between phone calls. The customer service folks were actually kind, something I've noticed now that "oncology" shows up next to my requests. And when the HealthNet folks understood the issue they reviewed the request while I was on the phone and two of them gave me the news on a conference call. I mean, wipe me up off the floor and tuck me into bed.
I guess it says a lot about our health care system that getting a "yes" from an insurance company in a reasonable time frame, with respect and kindness shown to the individual, is news. Forget that I had to spend the day chasing the "yes" down. It is still a "yes" and one I am grateful to have received. Go, HealthNet. Be kind to the little cancer chicks.
Wednesday, January 30, 2008
Fiestaware!
Another Cancer Perk arrived via UPS on Monday. A chubby box stuffed with ceramic dishes bearing "made in the USA" on their darling behinds. Bright colors. Peacock. Tangerine. Scarlet. Emerald. Oooh. Ahhhh. Fiestaware!
Okay, the uninitiated might wonder how Fiestaware China (unleaded, never had it, never will) can be considered an authentic Cancer Perk. Fiestaware resists chips. Is known to survive falls from counter to kitchen floor. The darn things actually come with a 3-year-warranty for pete's sake. Another plus is that they are microwave-safe plus come in heartlifting colors. Fun to collect. Once my dish dropping became a daily routine courtesy of Aromasin (numb fingers can't grip much of anything) I decided it would make sense to invest in some hardworking-yet-inexpensive dishes. So without these clunky fingers from chemo and hormone therapy I'd never have been able to justify new dinnerware. Voila! Cancer Perk.
I'll let you know what happens when the first dish hits the hardwood floor.
Unexpected Event of the Day:
One of my favorite blogs, A Woman of Many Parts, listed this site as one of her Reads. Minerva is most kind, and I send her some California sunshine in return.
Just as soon as it stops raining.
Monday, January 28, 2008
Cancer-Free Post
Hope is where you find it, and sometimes it all depends on where you look.
A product of a mixed marriage (Dad was a Republican, Mom a Democrat), I sided with Mom in nearly all matters political. After all, when she was organizing League of Women Voter committees through kitchen table meetings and phone calls who do you think was listening to every word? Despite leaving Illinois for California I've kept an eye on current players from the home state. Back in 2004 I ordered an Obama for President 2008 sweatshirt from Cafe Express. Never, ever anticipated that he would run so early. As he would say, I had the audacity of hope.
During the past few years this sweatshirt would often bring a "yeah, wouldn't that be great" remark from strangers or even "who's Obama?" from the unenlightened few. Now when I reach for the sweatshirt I pause, knowing that I'll be stopped for political discussions. Do I have the time? Am I dressed for discourse or really beyond repair, hoping to sneak by without notice? Should I slink back into longshot candidate attire and wear my Anderson for President t-shirt instead? Get this: Obama is no longer a long-shot candidate. Mom, are you watching this?
Today, in light of the Kennedy endorsements, a reminder of the moment when the possibility of change became more than a dream. If you missed it the first time, read the words now. Powerful. Hopeful.
If you want you can order an Obama shirt off the site while you're there. Most are backordered but, unlike Cafe Express, anything purchased goes into the campaign.
Go on, get a shirt. The red ones are totally hot.
A product of a mixed marriage (Dad was a Republican, Mom a Democrat), I sided with Mom in nearly all matters political. After all, when she was organizing League of Women Voter committees through kitchen table meetings and phone calls who do you think was listening to every word? Despite leaving Illinois for California I've kept an eye on current players from the home state. Back in 2004 I ordered an Obama for President 2008 sweatshirt from Cafe Express. Never, ever anticipated that he would run so early. As he would say, I had the audacity of hope.
During the past few years this sweatshirt would often bring a "yeah, wouldn't that be great" remark from strangers or even "who's Obama?" from the unenlightened few. Now when I reach for the sweatshirt I pause, knowing that I'll be stopped for political discussions. Do I have the time? Am I dressed for discourse or really beyond repair, hoping to sneak by without notice? Should I slink back into longshot candidate attire and wear my Anderson for President t-shirt instead? Get this: Obama is no longer a long-shot candidate. Mom, are you watching this?
Today, in light of the Kennedy endorsements, a reminder of the moment when the possibility of change became more than a dream. If you missed it the first time, read the words now. Powerful. Hopeful.
If you want you can order an Obama shirt off the site while you're there. Most are backordered but, unlike Cafe Express, anything purchased goes into the campaign.
Go on, get a shirt. The red ones are totally hot.
Sunday, January 20, 2008
Crazymaking stuff, that Aromasin. At least for me. Everyday I've been circling nearer and nearer the surface, shedding layers of gear, hoping to break the surface. Me, a hapless scubadiver in a sea of chemicals. I stopped taking this last drug December 26 after only 26 days of a proposed 5-year-run. The side-effects are still with me although less now. Every day my brain is clearer, my thoughts more focussed, my ability to stroke through the rip-tide of a medical wonder drug more sustained. The numbness, pain and heaviness of my hands have lessoned but not enough; I'm wearing carpal tunnel wrist braces to bed. I'm starting a Fiestaware collection, always wanted one, to replace all the dishes I've dropped recently. (Did you know that these dishes are guaranteed against chipping and breakage for 3 years? Wonder if I can get a guarantee like that.)
Not sure what I'm going to do for estrogen-stoppage. Maybe I'll bail out of this part of the program completely, or return to Tamoxifen. That one was nasty, too, though, with a kind of fatigue that made me question what I was getting up everyday for, anyway. The body does need some estrogen to function, afterall. This concept of "kill the tumor by killing estrogen" might be a tad overkill if you ask me. So far no one is asking. It's been a problem.
There's a lot of good going on. Dear friend Mot is journeying out from the frozen midland of Wisconsin for a vacation in the chilled coastal territory fondly known as Northern California. We'll play tourist, have quiet time and just pal around.
February will take me to yet another oncologist in San Francisco for a treatment plan review. Afterwards, I'll be returning to my same practice (no choice there, really, thanks to our lovely health care system) but I will be seeing a different Agent of Doom. This one is older, considered a "brilliant mind" and perhaps more able to communicate directly with patients than my current young doc. Both steps are huge for me, and long overdue. Being an advocate for oneself is hella hard.
The survivor support group for women I've searched for is finally happening. We've created one for ourselves with a therapist, retired now, from Stanford. Four women with different cancer diagnoses, backgrounds and intents will gather in a cozy church parlour for love, knowledge, friendship and support. Yahoo. You would think one of our hospitals or cancer care centers on the San Francisco Peninsula would offer a support group for cancer survivors, right? We see their lips moving but nothing much happening.
At the end of February I will begin the "end" of my surgical program. I'm scheduled for DIEP reconstruction. The reality of the surgery is pumping tension directly into a few muscles along my neck. You know, the ones that make it impossible to move your head right or left? Besides worrying about the pain, 7-week recovery and whether I'll have anything at all to show for the effort except thick scars and a flat chest, I'm stressing about the kids. Joe will be home but it will be disruptive for everyone to have me unwell. Hospital time, then resting at home. More evidence to them that their mom isn't well. And yet, I want to finish this up, get as much of my real body back as I can. For me, that means flipping my finger at being "less than" and asking for "real breasts." Okay, they'll be made of tummy fat but it's my tummy fat! No implants, no silicone, no apologies. After 19 months of camisoles I'd like the discomfort of a bra again. Slipping straps. Yes, I'm more than a pair of tits. I don't have to prove it. I would like to have soft, natural breasts to fill out a sweater, bounce when I walk the dog, cushion my children's heads, and be squishy when I hug. I like to hug. Lately, I've been keeping everyone at arm's length - literally - because it hurts when the psuedo-breasts (expanders) are pressed.
So, I guess I really am ready.
Not sure what I'm going to do for estrogen-stoppage. Maybe I'll bail out of this part of the program completely, or return to Tamoxifen. That one was nasty, too, though, with a kind of fatigue that made me question what I was getting up everyday for, anyway. The body does need some estrogen to function, afterall. This concept of "kill the tumor by killing estrogen" might be a tad overkill if you ask me. So far no one is asking. It's been a problem.
There's a lot of good going on. Dear friend Mot is journeying out from the frozen midland of Wisconsin for a vacation in the chilled coastal territory fondly known as Northern California. We'll play tourist, have quiet time and just pal around.
February will take me to yet another oncologist in San Francisco for a treatment plan review. Afterwards, I'll be returning to my same practice (no choice there, really, thanks to our lovely health care system) but I will be seeing a different Agent of Doom. This one is older, considered a "brilliant mind" and perhaps more able to communicate directly with patients than my current young doc. Both steps are huge for me, and long overdue. Being an advocate for oneself is hella hard.
The survivor support group for women I've searched for is finally happening. We've created one for ourselves with a therapist, retired now, from Stanford. Four women with different cancer diagnoses, backgrounds and intents will gather in a cozy church parlour for love, knowledge, friendship and support. Yahoo. You would think one of our hospitals or cancer care centers on the San Francisco Peninsula would offer a support group for cancer survivors, right? We see their lips moving but nothing much happening.
At the end of February I will begin the "end" of my surgical program. I'm scheduled for DIEP reconstruction. The reality of the surgery is pumping tension directly into a few muscles along my neck. You know, the ones that make it impossible to move your head right or left? Besides worrying about the pain, 7-week recovery and whether I'll have anything at all to show for the effort except thick scars and a flat chest, I'm stressing about the kids. Joe will be home but it will be disruptive for everyone to have me unwell. Hospital time, then resting at home. More evidence to them that their mom isn't well. And yet, I want to finish this up, get as much of my real body back as I can. For me, that means flipping my finger at being "less than" and asking for "real breasts." Okay, they'll be made of tummy fat but it's my tummy fat! No implants, no silicone, no apologies. After 19 months of camisoles I'd like the discomfort of a bra again. Slipping straps. Yes, I'm more than a pair of tits. I don't have to prove it. I would like to have soft, natural breasts to fill out a sweater, bounce when I walk the dog, cushion my children's heads, and be squishy when I hug. I like to hug. Lately, I've been keeping everyone at arm's length - literally - because it hurts when the psuedo-breasts (expanders) are pressed.
So, I guess I really am ready.
Saturday, December 29, 2007
Drama Princess Seeks Cancer Coach for Off-Off-Broadway Gig
It's been awhile since I've been afraid. The curtain of safety has been parted with news of one friend's recurrence, another's difficult surgery, yet another chum's wait for scan results. The fear is on stage now, the actors are friends. I do not want to see them suffer, nor do I want to lose them from my life. Every trite and overwrought phrase ever uttered rushes to my mouth but I catch myself at the last instant, instead offering up only what I have to give: my health, my company. And self-conscious that these friends must consider me unworthy to share in the sorrow because my cancer is new and has not yet mustered the forces to metastasize, I stuff my own anxiety back into place.
Yet still there is the dozing puppy that is my future with this disease. I see her over in the corner, one curious eye sleepily checking in to see what story is being told onstage. The fear I have for myself is that I won't make the right treatment decisions, that I will damage my body beyond repair in an effort to grant it a few more years. My children will not benefit if they have a mother who is alive but has lost the joy in moving her body, in creating stories and believing in them, and who is in too much pain to sleep or hold their hands. I've witnessed the horrific degradation of body, mind and spirit on those who pursue a cure at all costs. Already I believe I've wasted time with an oncologist who goes by the book and not by the patient, who doesn't listen and doesn't heal. This is my life. I'm "pre-recurrence" and I know that what I do, or don't do, now will affect my survival. Yet I've already given up more of my health to the potential cure than I was ever willing to sacrifice.
How do I find the balance that will save me? Tell me now before I forget I asked the question.
Yet still there is the dozing puppy that is my future with this disease. I see her over in the corner, one curious eye sleepily checking in to see what story is being told onstage. The fear I have for myself is that I won't make the right treatment decisions, that I will damage my body beyond repair in an effort to grant it a few more years. My children will not benefit if they have a mother who is alive but has lost the joy in moving her body, in creating stories and believing in them, and who is in too much pain to sleep or hold their hands. I've witnessed the horrific degradation of body, mind and spirit on those who pursue a cure at all costs. Already I believe I've wasted time with an oncologist who goes by the book and not by the patient, who doesn't listen and doesn't heal. This is my life. I'm "pre-recurrence" and I know that what I do, or don't do, now will affect my survival. Yet I've already given up more of my health to the potential cure than I was ever willing to sacrifice.
Thursday, December 27, 2007
Mindful Musings
Love the gal in yellow, taking a break on the stairs. Silly of her to wear that fetching frock, you say? But she was just out for a picnic in the woods with her beau. Who knew she was going to have such a bad day? Who knew? And yet she's just resting a moment before starting again. My guess is she's got some really great climbing shoes on beneath those frills.
My fingers are numb and it's not from the December frost hitting California. Twenty-six days on Aromasin and I'm ditching the tiny, sugar-coated white pill, exchanging it for another potential toxin called Arimidex. Thought I might tough out the bone and joint pain, even the insomnia, but the increasing numbness in my hands and fingers cannot be ignored. Although I know my Agent of Doom will never agree, I am having more cognitive disruption and memory loss. How bad is it? I've had to look up the names of the two drugs mentioned above three times while writing this post. Three times. During a conversation with the kids yesterday they repeatedly corrected me ("a tiger, mom, not a lion"). Over and over and I don't even catch myself "forgetting." Arimidex might be a better drug for my body. If not, I have two more options.
Ho, Ho, Ho
Christmas pushes invisible buttons. Rules are in place and not of our making, defining how we celebrate, where and when. Every year I wonder what traditions our children will remember, what they will carry forward. I hope it won't be the mad rush to buy the gifts, wrap the gifts, get the gifts, unwrap the gifts...Next year, always next year I promise to put more of my own tradition and life into the celebration. The busy-ness of following the established course distracts me, soaks up the energy and competes with the simplicity I long to create. Will the kids be disappointed by just a few gifts and time outdoors, in the woods or near the ocean? Will I have the courage to stand up and make the changes I want, knowing that they won't be popular with anyone? We'll see.
Journey of a Friend
The last post may have left the casual visitor wondering what became of dear Mot. The results of the scan were disheartening: the treatment did not work. After recovering his spirit, Mot returned to Evanston and began Treatment Plan B. Tomorrow he undergoes another scan and will learn next week how effective Plan B has been. No matter the outcome, Mot will be taking a break from six months of chemotherapy to fly the gentle skies to California for a visit with us in February. Yahoo!
There's Politics in Support
There's a hierarchy of sorts in the cancer world. Those with advanced or metastatic disease are "higher" up the totem pole than those whose cancer has not yet spread or recurred. (Yes, it's true. Does anyone on either side of the divide want to debate this?) Although to someone without cancer it seems I've been through a lot (and hell, I really have and still am going through it), I often feel unworthy in cancer groups or in conversations with people dealing with advanced disease. It's as though I haven't suffered enough, or really can't understand their anguish. Maybe I don't let people in enough to see my own pain. Dunno. Now, this isn't the case with Mot of course, or my close friends. Yet I've encountered it enough to be cautious when meeting people in survivor groups. Why mention it here? I've been working to find and now create a support group for women cancer survivors on the Pensinsula. Believe it or not, there isn't one for women (or men) after the initial oh-my-God-I-have-cancer. It's pretty well-documented that support groups add to survivorship, or at least to quality of life, and I know that they are fantastic resources in ways that the medical community is not. So, bringing this one to life is a big deal. It is also stirring up some feelings. Many times I bring good people together and then, not feeling comfortable in the group, I leave. I fear that I may design a wonderful community of support for women and then somehow exclude myself from it.
Wish I could remember where I heard that cancer doesn't create your life, it just amplifies the life you already have.
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