Warning: This entry can only be described as crass and goofy.
Today we took a jaunt over to our old haunts (Brookline, MA, where we lived for 13 years) to visit a local and well-known vendor of ladies' intimates. I now own support bras. They are less uncomfortable than I thought they'd be, and make me look a little bit like this lady.
(That's a Giant Robot named Aphrodite A, from a Japanese anime called Manzinger Z (also known as Trantor Z). Yes, her breasts are missiles. Yes, her pilot is a teenage girl. Yes, she only has the two weapons, and once they are fired she is weakened and helpless. Yes, the Manzinger Giant Robot has a lot more weapons, is piloted by a teenage boy, and always has to resue poor Aphrodite. Yes, there are bad guys and a mad scientist. Very silly, I know, but you'll never, ever forget Aphrodite A, will you?)
While there, I spotted a calendar put out by a group called All4One, which is four charities who do stuff for people with breast cancer. Most importantly, they provide free post-surgical bras and prostheses to underserved (read: poor) women. And every year they ask BRAtistes (sorry) and celeBRAties (sorry, sorry) to create art objects shaped vaguely like bras, make them up as a calendar, and auction them off at a gala Event.
See the galleries here.
Some of the bras are really art; others, even when they don't somehow have the Art vibe, are quite witty. I bought the calendar, and will investigate the charities involved further. If they deserve support -- and certainly their goal is small enough and worthy enough to be achievable and valuable -- I will let you know.
I did take mild issue with a quote from one of the artists. She made a bustier mosaic out of broken china, garnet rough, and other things. She is a breast cancer survivor herself, and wrote about how her life was "shattered" by breast cancer, and the broken pieces in the mosaic symbolize her broken, pieced-together life.
That's certainly one way to look at it. And maybe, if I was facing mastectomy, I'd feel the same. But right this instant minute I do not feel like my life is shattered, or is going to be shattered. I'm going to have surgery, and my left breast may come out of that surgery looking like it's been munched by weasels. Call me vain, but I'm more distressed by the thought of losing my hair as I pass through chemo and radiation.
I guess this falls into the category of, "It takes all kinds." The lady's art is quite good, and I don't need to share her emotions in order to empathize with their expression.
Speaking of which, a good friend has taken a bunch of pictures of me and will share them as jpegs. So I should soon be able to show you my pre-chemo hair in all its multi-hued glory.
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Saturday, July 30, 2011
Thursday, July 28, 2011
You wouldn't think it would be this difficult
I have a sister who's two years younger than me. Back in our childhood, there was sometimes friction between us. I knew she finally forgave me for being oldest when she allowed me to recommend a pediatrician.
That was more than 20 years ago.
She was offering to drive us, and to be with Bravest, and he was being all, "I don't want this to be about me," so (being my sister) she took matters into her own hands. Despite a ferociously busy schedule, she cleared her calendar and then told us she was going to be at the hospital. When I called her, the conversation went something like this:
"Bravest doesn't want this to be about him. So... do you want to be there because you're worried about your sister? Or because your sister would like to have you there?"
A pause.
"All of that."
And why is it so hard to say to the person I used to bathe with every night 53 years ago or so, "It would be a great comfort to have you there. Please come." Or for her to say, "I love you and I want to know what's happening to you."
I don't know why it's hard.
Bravest was laughing at me as I described this conversation, and so I asked him, "Would it be hard for you to say, "I love you and I want to be there for you," to your brothers?
"Well... yes."
Humans. Silly creatures indeed.
That was more than 20 years ago.
She was offering to drive us, and to be with Bravest, and he was being all, "I don't want this to be about me," so (being my sister) she took matters into her own hands. Despite a ferociously busy schedule, she cleared her calendar and then told us she was going to be at the hospital. When I called her, the conversation went something like this:
"Bravest doesn't want this to be about him. So... do you want to be there because you're worried about your sister? Or because your sister would like to have you there?"
A pause.
"All of that."
And why is it so hard to say to the person I used to bathe with every night 53 years ago or so, "It would be a great comfort to have you there. Please come." Or for her to say, "I love you and I want to know what's happening to you."
I don't know why it's hard.
Bravest was laughing at me as I described this conversation, and so I asked him, "Would it be hard for you to say, "I love you and I want to be there for you," to your brothers?
"Well... yes."
Humans. Silly creatures indeed.
Monday, July 25, 2011
And some of us re-shape the hole.
In our search for assistance for Bravest on the day of surgery, today I called the Surgical Patient Relations Family Waiting Room. Why not? It was right there on the letter sent to me by the surgeon's coordinator as the place where he would be waiting for me.
Ooops. Letter's wrong! Because I'm having day surgery (and thus SAVING THE SYSTEM THOUSANDS OF DOLLARS), instead of waiting in a bright, airy, well-furnished room with little side rooms where a patient spouse can even catch some zzs, Bravest will have to spend more than 10 hour in a claustrophobic pit in the basement.
Also, Ooops! We don't do that sort of thing here, let me connect you with Patient and Family Relations.
Ooops! We don't have anyone who can help you here, let me connect you with the Patient Coordinator.
Ooops! All we do here is make sure you're going to be safe when you go home, let me connect you with Patient and Family Relations.
At which point I lost it, to the extent that when the very nice fellow who had the misfortune to answer the phone as Patient Coordinator couldn't get any further than I did, he had a social worker call me back.
God bless my former profession. Most people think of social workers as less-exalted psychologists; but what we really are is problem-solvers who will also listen to you rant in order to get at ever-deeper levels of solvable problems. Which is why you find social workers leading the way in fields like cognitive therapy... but I digress.
THIS fine example of a fine group of people went and wrought mightily with the people at Patient and Family Relations, AND the people in the Brechthold Center (the fancy waiting-room for families of overnight patients) and called me back in a very few hours with the following:
All this is well within their mandate and should have been known to all the people who spoke to me -- only it's not in writing and we're "non-standard", so no one on the front lines knew how to respond.
I have expressed my sincere thanks, as well as my hope that something will be put in writing for the P&FR standard operating procedures manual. If there is such a thing. If not, I have offered to write it.
After all, you either change the square peg to fit the round hole, or re-shape the hole. And since there are sure to be other situations where a significant other has disabilities and needs special accommodations, and since such is the mandate of the ADA, among other things, AND since this is supposedly one of the Best Hospitals in Boston, they are going to change.
This cancer is going to have Meaning, or I'll know the reason why.
(I'd score this as a win, but we won't know if we've really won until August 9th.)
Ooops. Letter's wrong! Because I'm having day surgery (and thus SAVING THE SYSTEM THOUSANDS OF DOLLARS), instead of waiting in a bright, airy, well-furnished room with little side rooms where a patient spouse can even catch some zzs, Bravest will have to spend more than 10 hour in a claustrophobic pit in the basement.
Also, Ooops! We don't do that sort of thing here, let me connect you with Patient and Family Relations.
Ooops! We don't have anyone who can help you here, let me connect you with the Patient Coordinator.
Ooops! All we do here is make sure you're going to be safe when you go home, let me connect you with Patient and Family Relations.
At which point I lost it, to the extent that when the very nice fellow who had the misfortune to answer the phone as Patient Coordinator couldn't get any further than I did, he had a social worker call me back.
God bless my former profession. Most people think of social workers as less-exalted psychologists; but what we really are is problem-solvers who will also listen to you rant in order to get at ever-deeper levels of solvable problems. Which is why you find social workers leading the way in fields like cognitive therapy... but I digress.
THIS fine example of a fine group of people went and wrought mightily with the people at Patient and Family Relations, AND the people in the Brechthold Center (the fancy waiting-room for families of overnight patients) and called me back in a very few hours with the following:
- Bravest can wait in the Brechthold Center, in comfort.
- People there will make sure he's comfortable and will help him get around if/when he needs help.
- My surgeon can find him there to tell him how I'm doing.
All this is well within their mandate and should have been known to all the people who spoke to me -- only it's not in writing and we're "non-standard", so no one on the front lines knew how to respond.
I have expressed my sincere thanks, as well as my hope that something will be put in writing for the P&FR standard operating procedures manual. If there is such a thing. If not, I have offered to write it.
After all, you either change the square peg to fit the round hole, or re-shape the hole. And since there are sure to be other situations where a significant other has disabilities and needs special accommodations, and since such is the mandate of the ADA, among other things, AND since this is supposedly one of the Best Hospitals in Boston, they are going to change.
This cancer is going to have Meaning, or I'll know the reason why.
(I'd score this as a win, but we won't know if we've really won until August 9th.)
Friday, July 22, 2011
This stuff is just plain grim
I got the info from the surgeon about where I need to be and what I need to do, and it's kind of grim.
For one thing, I get nothing to eat or drink from midnight the night before. The surgery is at 1 PM. As in, 13 hours with nothing. Which is a long time. All I can say is, they'd better be hooking me up to a nice big bag of Ringer's Solution well before 1 PM or I will not be responsible for my actions.
And this raises the issue of what to do with/about Bravest. I want him there; I feel safer with him there. On the other hand, I can't very well be making sure he gets lunch -- nor can I be walking him to the rest room if I'm getting radioactive dye injected in my nipple or wire guides inserted in my breast. I think our best bet is to stop by the Family Support desk and see what the nice people have to offer, because Bravest himself doesn't really want to impose on either the Wonder Offspring (WO, for short) or on my sister or any of our friends.
(That's pretty much the way he was when he, himself was sick a couple of years ago. "Tell them not to come. Why should they rush in here just to sit?")
And then, I have to wear something that buttons up the front. I own nothing that buttons up the front. And a support bra. The only such creature I have is a sports bra that pulls over the head and is too small for me anyway. All my other intimates are at least 3 years old and were bought because they were comfortable, which means they're not very supportive. (For you mens, that means they don't so much lift and separate; more like keep from flopping around in every direction.) And yes, this is a poor little rich girl problem; spending some money is all that's required. But not what I wanted to spend money on, at all at all.
We'll figure it out. We always do.
In more comfortable news, last night was so hot that neither of us slept much, and Bravest actually ended up on the floor for the one or two tenths of a degree of additional coolness. So today we went out and bought an air conditioner, the smallest unit I could find on line. It was a mere $99, and it's doing a splendid job. I am really, really looking forward to a good night's sleep.
For one thing, I get nothing to eat or drink from midnight the night before. The surgery is at 1 PM. As in, 13 hours with nothing. Which is a long time. All I can say is, they'd better be hooking me up to a nice big bag of Ringer's Solution well before 1 PM or I will not be responsible for my actions.
And this raises the issue of what to do with/about Bravest. I want him there; I feel safer with him there. On the other hand, I can't very well be making sure he gets lunch -- nor can I be walking him to the rest room if I'm getting radioactive dye injected in my nipple or wire guides inserted in my breast. I think our best bet is to stop by the Family Support desk and see what the nice people have to offer, because Bravest himself doesn't really want to impose on either the Wonder Offspring (WO, for short) or on my sister or any of our friends.
(That's pretty much the way he was when he, himself was sick a couple of years ago. "Tell them not to come. Why should they rush in here just to sit?")
And then, I have to wear something that buttons up the front. I own nothing that buttons up the front. And a support bra. The only such creature I have is a sports bra that pulls over the head and is too small for me anyway. All my other intimates are at least 3 years old and were bought because they were comfortable, which means they're not very supportive. (For you mens, that means they don't so much lift and separate; more like keep from flopping around in every direction.) And yes, this is a poor little rich girl problem; spending some money is all that's required. But not what I wanted to spend money on, at all at all.
We'll figure it out. We always do.
In more comfortable news, last night was so hot that neither of us slept much, and Bravest actually ended up on the floor for the one or two tenths of a degree of additional coolness. So today we went out and bought an air conditioner, the smallest unit I could find on line. It was a mere $99, and it's doing a splendid job. I am really, really looking forward to a good night's sleep.
Wednesday, July 20, 2011
We've got a date!
August 9th, to be precise. At Brigham & Women's Hospital, which is exactly where I wanted to be. And now that that's settled and the pre-op appointments are all set up, I am hoping to:
- Relax.
- Do some shopping.
- Go swimming in the ocean.
- Maybe get down to the Cape to see some relatives.
- Do a little work to bring in a few dollars.
- Keep cool.
Tuesday, July 19, 2011
So Much for Drama
This is one of those posts where I offer my friends and family the opportunity to laugh their heads off at me. If this doesn't appeal to you, please make sure your head is fully fastened on before reading further.
Ready? Good.
Today we went to see the surgeon at Dana-Farber, with a view to scheduling surgery. I had written out a whole long list of questions, and we got there in plenty of time for our 11 AM appointment.
The surgeon was an hour late, which gave us many opportunities to overhear the conversations around us -- particularly the folks right behind us who were playing a protracted round of My Chemo's Worse Than Your Chemo, to the non-delight of their involuntary audience.
Shortly after we were settled in the room, the surgeon came running in. "I'm SO SOORRRRRY!" I was taken aback because in all my years of consuming medical services, I've never had a surgeon -- a faculty member at the Harvard Medical School no less -- apologize to me for anything. I mean, where does the doctoral dignity go from there?
This lady apparently doesn't rely on the fear/deference of her patients to make her feel like the Big Woman On Campus. She sat down, and we had a brief conversation about what I wanted to do and what she thought was advisable. Turns out that if I want the surgery at one of the two hospitals she works at in Boston, I will have to wait till mid to late August, but if I want to schlep down to Braintree during rush hour, I could have it done next week.
Oh, I said. It's day surgery.
Oh yes, she averred. Three hours or so of prep, two hours of surgery, an hour of recovery time, and home again. She even uses dissolving sutures, so there's no post-op trip to get the stitches out.
And the little self-indulgent fantasy I had of people tiptoeing respectfully into my (spacious, flower-filled) hospital room, moving past the gently buzzing pumps and glowing computer screens to press my hand and whisper their affection -- that little fantasy sighed and died.
Instead, I get to make sure there's clean sheets on the bed for me to crawl between when I get back home. And the next day, other than a little soreness, I should be as good as ever. I can even take a shower. No heavy lifting and no swimming for two weeks, by which time we should have the pathology report. In other words, the hard part isn't the surgery -- the hard part is the chemo. I might need help with one grocery store run, but that's it.
Heck, I don't even need to get pre-approval from the insurance company. It's day surgery, and I only need approval for hospital stays.
How totally deflating.
(I did speak to the surgeon about wanting copies of everything, which she totally understood. She also immediately printed out copies of my blood tests and chest x-ray, and told us exactly how Bravest would be involved in the process on the day of. And she gave me a hug as we left. No Dignified Doctors, no Hospital Room Drama -- as a soap opera, this whole event is made of fail.)
Oh, I opted for Boston. Even if I left home at 6:30 AM, I couldn't be sure I'd make it to Braintree by 9:00. So it will either be Brigham & Womens or Faulkner Hospital. The latter has been famous for breast work since the days of Susan Love. Either is cool with me.
Ready? Good.
Today we went to see the surgeon at Dana-Farber, with a view to scheduling surgery. I had written out a whole long list of questions, and we got there in plenty of time for our 11 AM appointment.
The surgeon was an hour late, which gave us many opportunities to overhear the conversations around us -- particularly the folks right behind us who were playing a protracted round of My Chemo's Worse Than Your Chemo, to the non-delight of their involuntary audience.
Shortly after we were settled in the room, the surgeon came running in. "I'm SO SOORRRRRY!" I was taken aback because in all my years of consuming medical services, I've never had a surgeon -- a faculty member at the Harvard Medical School no less -- apologize to me for anything. I mean, where does the doctoral dignity go from there?
This lady apparently doesn't rely on the fear/deference of her patients to make her feel like the Big Woman On Campus. She sat down, and we had a brief conversation about what I wanted to do and what she thought was advisable. Turns out that if I want the surgery at one of the two hospitals she works at in Boston, I will have to wait till mid to late August, but if I want to schlep down to Braintree during rush hour, I could have it done next week.
Oh, I said. It's day surgery.
Oh yes, she averred. Three hours or so of prep, two hours of surgery, an hour of recovery time, and home again. She even uses dissolving sutures, so there's no post-op trip to get the stitches out.
And the little self-indulgent fantasy I had of people tiptoeing respectfully into my (spacious, flower-filled) hospital room, moving past the gently buzzing pumps and glowing computer screens to press my hand and whisper their affection -- that little fantasy sighed and died.
Instead, I get to make sure there's clean sheets on the bed for me to crawl between when I get back home. And the next day, other than a little soreness, I should be as good as ever. I can even take a shower. No heavy lifting and no swimming for two weeks, by which time we should have the pathology report. In other words, the hard part isn't the surgery -- the hard part is the chemo. I might need help with one grocery store run, but that's it.
Heck, I don't even need to get pre-approval from the insurance company. It's day surgery, and I only need approval for hospital stays.
How totally deflating.
(I did speak to the surgeon about wanting copies of everything, which she totally understood. She also immediately printed out copies of my blood tests and chest x-ray, and told us exactly how Bravest would be involved in the process on the day of. And she gave me a hug as we left. No Dignified Doctors, no Hospital Room Drama -- as a soap opera, this whole event is made of fail.)
Oh, I opted for Boston. Even if I left home at 6:30 AM, I couldn't be sure I'd make it to Braintree by 9:00. So it will either be Brigham & Womens or Faulkner Hospital. The latter has been famous for breast work since the days of Susan Love. Either is cool with me.
Monday, July 18, 2011
Undermining The System from Within
You know, if the medical professionals of this great nation ever decided to speak with any sort of unity, we'd have single-payor health care faster than you can say "Michelle Bachmann is crazy."
Witness our session today with the skin doc, who did a little frosting of a spot or so on Bravest's psoriatic bod and (GASP) suggested that the psoriasis might be made less bothersome by a little sun exposure. A very little.
Since Bravest and I see this fellow together (so I can receive instructions and be made aware of problem spots), there is a certain amount of what might be called marital persiflage.
Doc: "Things OK at work, any unusual stress...?"
Bravest: "Oh no, we've retired." Bravest often uses the Royal or Publisher's pronoun, don't ask me why.)
Lirazel: "I'm afraid the only stress in his life is caused by me."
Which was taken as a joke, until it was my turn and I had to tell the doctor about my own situation. Which, of course, is stressful to Bravest, though probably not the cause of his increasing psoriasis.
It turns out that the BRCA gene variants (which I do not have, remember?) also have a role in skin cancers. Otherwise, I have nothing to worry about -- dermatologists don't even get involved in the treatment of radiation side-effects any more, as the targeting of the treatments has gotten quite precise.
And then we got into a discussion of the Boobeaucracy, and he nearly stopped being a doctor as he shouted, "Les societies d'insurance: A la LANTERNE!" Or words to that effect.
There are a LOT of businesses making big money off of breast cancer, and the doctors all know it.
Witness our session today with the skin doc, who did a little frosting of a spot or so on Bravest's psoriatic bod and (GASP) suggested that the psoriasis might be made less bothersome by a little sun exposure. A very little.
Since Bravest and I see this fellow together (so I can receive instructions and be made aware of problem spots), there is a certain amount of what might be called marital persiflage.
Doc: "Things OK at work, any unusual stress...?"
Bravest: "Oh no, we've retired." Bravest often uses the Royal or Publisher's pronoun, don't ask me why.)
Lirazel: "I'm afraid the only stress in his life is caused by me."
Which was taken as a joke, until it was my turn and I had to tell the doctor about my own situation. Which, of course, is stressful to Bravest, though probably not the cause of his increasing psoriasis.
It turns out that the BRCA gene variants (which I do not have, remember?) also have a role in skin cancers. Otherwise, I have nothing to worry about -- dermatologists don't even get involved in the treatment of radiation side-effects any more, as the targeting of the treatments has gotten quite precise.
And then we got into a discussion of the Boobeaucracy, and he nearly stopped being a doctor as he shouted, "Les societies d'insurance: A la LANTERNE!" Or words to that effect.
There are a LOT of businesses making big money off of breast cancer, and the doctors all know it.
Sunday, July 17, 2011
Genes and the Boobeaucracy
So, first read this.
As a result of the gene patent, only one lab in the world currently does the genetic tests I've had done.
The first run of tests, for the BRCA1 and BRCA2 gene variants, "only" cost $586, of which my copay is $86. So far, fairly good.
The more extensive testing came in at $3500, of which my share is $500.
More than four grand so that I can make an informed decision about surgery and treatment. Fortunately, insurance covers nearly all of it, and even more fortunately, we have the money.
But suppose we didn't?
The really stupid part of this, though? Having this testing done means I am totally comfortable about going with a less invasive, less expensive form of surgery. Saving the insurance company tens of thousands of dollars more than they would have paid in the past, when once size fit all. Seriously, the average cost of treating a breast cancer patient is about $50k. Part of what skews the results upwards are unnecessary mastectomies.
In other words, the insurance company should be paying ME to figure things out like this.
As a result of the gene patent, only one lab in the world currently does the genetic tests I've had done.
The first run of tests, for the BRCA1 and BRCA2 gene variants, "only" cost $586, of which my copay is $86. So far, fairly good.
The more extensive testing came in at $3500, of which my share is $500.
More than four grand so that I can make an informed decision about surgery and treatment. Fortunately, insurance covers nearly all of it, and even more fortunately, we have the money.
But suppose we didn't?
The really stupid part of this, though? Having this testing done means I am totally comfortable about going with a less invasive, less expensive form of surgery. Saving the insurance company tens of thousands of dollars more than they would have paid in the past, when once size fit all. Seriously, the average cost of treating a breast cancer patient is about $50k. Part of what skews the results upwards are unnecessary mastectomies.
In other words, the insurance company should be paying ME to figure things out like this.
Friday, July 15, 2011
Oh, I'm meeting with the surgeon, / the surgeon's meeting with me...
I think I need to write The Breast Cancer Blues. Or someone does.
Anyway, next week looks like this:
Monday: See Skin Doc at 12. This nice person has been taking care of Bravest's hide for years and years, and mine since last year. We have our appointments together, so he can show me areas of concern for Bravest. Who has popped another couple of surgery-requiring knobs, or I miss my guess. I think we're going to have to ask his family for help with transport on that one.
Tuesday: Meet with builders about rebuilding our front porch and walk, the former of which is falling apart and the latter of which turns into Lake Baikal every winter. 9 AM
Meet with surgeon at Dana-Farber at 11.
Meet with my opthamologist/surgeon at 1, and get eyes dilated for check on retinas, position of replacement lenses (due to cataracts), and on-going monitoring of iritis. Renew eye drop prescriptions, get one set refilled.
Go home and wait for eyes to clear.
Wednesday: Have lunch with co-workers.
Thursday: Meet with lawn service at 10 or so.
Celebrate Bravest's 65th circumnavigation of the sun with a posh dinner out.
Friday: Nothing so far, but I'm just waaaaaiting.
Maybe recovery will be more calm, but I doubt it!
Anyway, next week looks like this:
Monday: See Skin Doc at 12. This nice person has been taking care of Bravest's hide for years and years, and mine since last year. We have our appointments together, so he can show me areas of concern for Bravest. Who has popped another couple of surgery-requiring knobs, or I miss my guess. I think we're going to have to ask his family for help with transport on that one.
Tuesday: Meet with builders about rebuilding our front porch and walk, the former of which is falling apart and the latter of which turns into Lake Baikal every winter. 9 AM
Meet with surgeon at Dana-Farber at 11.
Meet with my opthamologist/surgeon at 1, and get eyes dilated for check on retinas, position of replacement lenses (due to cataracts), and on-going monitoring of iritis. Renew eye drop prescriptions, get one set refilled.
Go home and wait for eyes to clear.
Wednesday: Have lunch with co-workers.
Thursday: Meet with lawn service at 10 or so.
Celebrate Bravest's 65th circumnavigation of the sun with a posh dinner out.
Friday: Nothing so far, but I'm just waaaaaiting.
Maybe recovery will be more calm, but I doubt it!
Thursday, July 14, 2011
When negatives are positive
News, friends!
The results of the genetic tests are fully in, and there are no anomalies on my genome! This means that I am definitely a candidate for lumpectomy rather than anything more radical. I have a call into the surgeon's office and will soon have a date.
And second, the endoscopy went well, everything in there is fine, there's no explanation for the anemia, but at least I can head for chemo knowing that I am starting with (as it were) a clean slate. Also, my upper insides are a prettier shade of pink than my lower insides. Whoo-hoo!
The procedure was done at a local hospital, and I have to say that it was not a 100% good experience. Leaving aside some subjective stuff, a prep room and a procedure room where there were paper scraps and EKG "stickies" on the floor does not inspire confidence. But, it's over.
I'm feeling a bit too quaggly to have deep thoughts on any subject, so that's all for now.
The results of the genetic tests are fully in, and there are no anomalies on my genome! This means that I am definitely a candidate for lumpectomy rather than anything more radical. I have a call into the surgeon's office and will soon have a date.
And second, the endoscopy went well, everything in there is fine, there's no explanation for the anemia, but at least I can head for chemo knowing that I am starting with (as it were) a clean slate. Also, my upper insides are a prettier shade of pink than my lower insides. Whoo-hoo!
The procedure was done at a local hospital, and I have to say that it was not a 100% good experience. Leaving aside some subjective stuff, a prep room and a procedure room where there were paper scraps and EKG "stickies" on the floor does not inspire confidence. But, it's over.
I'm feeling a bit too quaggly to have deep thoughts on any subject, so that's all for now.
Wednesday, July 13, 2011
There are going to be lots of days like this
Today was a waiting day. Waiting for the genetics results, waiting for the procedure I'm having tomorrow. Waiting for a surgery date to be set. Waiting.
In the meantime, I did a bit of housework, and Bravest and I went to a local furniture emporium and bought me a reclining armchair, since I've been instructed to sit around with my legs up as much as possible. I also contacted Bose customer service about getting our old and semi-functional home theater system replaced. Those people are amazing-- they're giving us a new system to replace one bought in 2004, for about a third of its retail cost.
So I will have a reclining chair and something that can play DVDs on our big TV, AND make great sounds for Bravest (who deserves great sounds as much as I deserve to see cute Japanese schoolgirls beat up space aliens while operating giant robots).
And I contacted a landscaper about doing some of the work that I won't be doing this summer, like mowing and hacking down the thicket behind the garage.
But all of this has a very "meantime" feeling about it. It needs to get done, it will conduce to my comfort and recovery, etc. Still, I feel like life is a waiting room where no one's updated the magazines in a while.
And speaking of waiting rooms, Monday I had an echocardiogram. (Clearly, I don't have heart disease or they would have called me by now.) For this, I went to the Carl and Ruth Shapiro Center for Cardiovascular Care, a huge new building across from Brigham & Women's Hospital in Boston.
For those not familiar with the details of the Bernie Madoff scandal, the Shapiros were major investors with Mr. Madoff. A month before the crash, they gave him a huge loan on nothing but his say-so. Their daughter married a fellow who was one of his major "feeders". And the saddest thing is, they used nearly every penny they got from their "investment" with him to build hospitals and laboratories, endow symphonies, help build museum wings, etc. The Shapiro Center is one of the last things they built. The Madoff Ponzi scheme fell apart while it was under construction. The Shapiro foundation lost more than $150 million, they themselves lost an undisclosed amount, and a trusted friendship of more than 50 years -- a friendship that seemed to be nothing but good -- was shown to have had no real foundation at all.
It feels very odd to be receiving care in this building, to be planning a stay in the Shapiro Pavilion (huge rooms) if there's space available when I have surgery. And because of the waiting, and because of the places where I seem to be waiting the most, this bit of Psalm 62 seemed particularly appropriate this Sunday.
For God alone my soul in silence waits; *
truly, my hope is in him.
He alone is my rock and my salvation, *
my stronghold, so that I shall not be shaken.
In God is my safety and my honor; *
God is my strong rock and my refuge.
Put your trust in him always, O people, *
pour out your hearts before him, for God is our refuge.
Those of high degree are but a fleeting breath, *
even those of low estate cannot be trusted.
On the scales they are lighter than a breath, *
all of them together.
Put no trust in extortion; in robbery take no empty pride; *
though wealth increase, set not your heart upon it.
God has spoken once, twice have I heard it, *
that power belongs to God.
Steadfast love is yours, O Lord, *
for you repay everyone according to his deeds.
* For those who don't church much, the * marks a long pause when reading or chanting. When reading responsively by half-verses, it marks the changeover from one group to another, or from the leader to the congregation.
In the meantime, I did a bit of housework, and Bravest and I went to a local furniture emporium and bought me a reclining armchair, since I've been instructed to sit around with my legs up as much as possible. I also contacted Bose customer service about getting our old and semi-functional home theater system replaced. Those people are amazing-- they're giving us a new system to replace one bought in 2004, for about a third of its retail cost.
So I will have a reclining chair and something that can play DVDs on our big TV, AND make great sounds for Bravest (who deserves great sounds as much as I deserve to see cute Japanese schoolgirls beat up space aliens while operating giant robots).
And I contacted a landscaper about doing some of the work that I won't be doing this summer, like mowing and hacking down the thicket behind the garage.
But all of this has a very "meantime" feeling about it. It needs to get done, it will conduce to my comfort and recovery, etc. Still, I feel like life is a waiting room where no one's updated the magazines in a while.
And speaking of waiting rooms, Monday I had an echocardiogram. (Clearly, I don't have heart disease or they would have called me by now.) For this, I went to the Carl and Ruth Shapiro Center for Cardiovascular Care, a huge new building across from Brigham & Women's Hospital in Boston.
For those not familiar with the details of the Bernie Madoff scandal, the Shapiros were major investors with Mr. Madoff. A month before the crash, they gave him a huge loan on nothing but his say-so. Their daughter married a fellow who was one of his major "feeders". And the saddest thing is, they used nearly every penny they got from their "investment" with him to build hospitals and laboratories, endow symphonies, help build museum wings, etc. The Shapiro Center is one of the last things they built. The Madoff Ponzi scheme fell apart while it was under construction. The Shapiro foundation lost more than $150 million, they themselves lost an undisclosed amount, and a trusted friendship of more than 50 years -- a friendship that seemed to be nothing but good -- was shown to have had no real foundation at all.
It feels very odd to be receiving care in this building, to be planning a stay in the Shapiro Pavilion (huge rooms) if there's space available when I have surgery. And because of the waiting, and because of the places where I seem to be waiting the most, this bit of Psalm 62 seemed particularly appropriate this Sunday.
For God alone my soul in silence waits; *
truly, my hope is in him.
He alone is my rock and my salvation, *
my stronghold, so that I shall not be shaken.
In God is my safety and my honor; *
God is my strong rock and my refuge.
Put your trust in him always, O people, *
pour out your hearts before him, for God is our refuge.
Those of high degree are but a fleeting breath, *
even those of low estate cannot be trusted.
On the scales they are lighter than a breath, *
all of them together.
Put no trust in extortion; in robbery take no empty pride; *
though wealth increase, set not your heart upon it.
God has spoken once, twice have I heard it, *
that power belongs to God.
Steadfast love is yours, O Lord, *
for you repay everyone according to his deeds.
* For those who don't church much, the * marks a long pause when reading or chanting. When reading responsively by half-verses, it marks the changeover from one group to another, or from the leader to the congregation.
Monday, July 11, 2011
Maybe I'll get to have some fun after all!
I was just looking over my heap 'o' cancer lit (already growing like the thing itself), and there's a treatment description that says I have a month's recovery time between treatment types. This means that maybe, if I heal up fast and don't need additional surgery, I can actually visit some relatives and friends over the summer. YAY!
It also means that, best case, I'll be done with this stuff in time for Christmas. Worst case, we're talking Easter. (Very worst case, we're talking indefinitely; and, as previously noted, in the infinitive we're talking Infinitely, but let's leave that bridge till we blast it with gamma rays, yes?)
It also means that, best case, I'll be done with this stuff in time for Christmas. Worst case, we're talking Easter. (Very worst case, we're talking indefinitely; and, as previously noted, in the infinitive we're talking Infinitely, but let's leave that bridge till we blast it with gamma rays, yes?)
Saturday, July 9, 2011
I will if I feel like it, dammit!
When people ask me how I'm doing, I sometimes provide a list of things I've been up to. Like discussing my hypothetical funeral with the priest at my church.
And sometimes, this causes a freakout. "YOU'RE NOT DYING!" they nearly shout. "DON'T TALK LIKE THAT!"
Um. Sorry if it bothers you, but I am so dying, and so are you.
Every day I wake up, I'm presented with a fresh set of pleasures, challenges, and opportunities -- and I am also one day closer to my dissolution. I've known this fact for years, and I'm very comfortable with it. Every breath I draw draws me closer to the terminus of life as we know it, and to the point where either I shall find that faith merges into sight, or there will be no "I" to find anything.
This doesn't scare me, and it shouldn't scare anyone else. I am not being "negative" when I plan my funeral, or price cemetery plots, or make a will, or otherwise prepare for The Inevitable. I'm making sure that the mess I leave behind is as small as possible, that the people who love me will have one more chance to understand the things that have been most important to me, and that those who have to carry on without me can do so as far as I am able to help them.
What's morbid, to me, is people who are afraid to think about death, who view her as an enemy instead of our merciful sister.
So please don't tell me I'm not dying. Look to your own life, and make sure that, if you are called to leave it suddenly, you are ready.
If you get to Heaven before I do,
(Comin' for to carry me home!)
Tell all my friends I'm a-comin' too.
(Comin' for to carry me home!)
Swing low, sweet chariot!
Comin' for to carry me home!
Swing low, sweet chariot!
Comin' for to carry me home!
And sometimes, this causes a freakout. "YOU'RE NOT DYING!" they nearly shout. "DON'T TALK LIKE THAT!"
Um. Sorry if it bothers you, but I am so dying, and so are you.
Every day I wake up, I'm presented with a fresh set of pleasures, challenges, and opportunities -- and I am also one day closer to my dissolution. I've known this fact for years, and I'm very comfortable with it. Every breath I draw draws me closer to the terminus of life as we know it, and to the point where either I shall find that faith merges into sight, or there will be no "I" to find anything.
This doesn't scare me, and it shouldn't scare anyone else. I am not being "negative" when I plan my funeral, or price cemetery plots, or make a will, or otherwise prepare for The Inevitable. I'm making sure that the mess I leave behind is as small as possible, that the people who love me will have one more chance to understand the things that have been most important to me, and that those who have to carry on without me can do so as far as I am able to help them.
What's morbid, to me, is people who are afraid to think about death, who view her as an enemy instead of our merciful sister.
So please don't tell me I'm not dying. Look to your own life, and make sure that, if you are called to leave it suddenly, you are ready.
If you get to Heaven before I do,
(Comin' for to carry me home!)
Tell all my friends I'm a-comin' too.
(Comin' for to carry me home!)
Swing low, sweet chariot!
Comin' for to carry me home!
Swing low, sweet chariot!
Comin' for to carry me home!
A disclaimer.
I just want to make it clear that when I'm writing about medical stuff, I'm writing about my understanding of what has been explained to me. I'm not writing as a doctor, or even as more than a sporadically and incompletely informed layperson.
In other words, if any of you find yourselves facing the same thing, and I earnestly hope that never happens to anyone reading this, talk to your own doctors, and listen to what they say. The most I would let this blog do is perhaps suggest some questions you might ask.
In other words, if any of you find yourselves facing the same thing, and I earnestly hope that never happens to anyone reading this, talk to your own doctors, and listen to what they say. The most I would let this blog do is perhaps suggest some questions you might ask.
Friday, July 8, 2011
More detailed good news
As previously reported, I don't have either the two mutations one can have on the BRCA1 gene, nor the one mutation one can have on the BRCA2 gene.
This means that my ovaries (useless though they may be) are safe for now, and that the odds that cancer will recur if I only have a lumpectomy are... well, hang on a minute.
There is a more complex test they will do on the whole BR gene sequence, to see if I have either a known anomaly (and thus may still want to consider mastectomy) or even an anomaly on which there's insufficient data for a ruling. (Only about 4% of people turn out to have an "insufficient evidence to convict" gene variant, and more than half of those are ruled to be normal as more data is collected.)
All of this is a great relief, the way that, well, hearing you have an easily-cured cancer is a great relief. And I am grateful to live in a time when having this kind of information is even possible. I really feel I'm making an informed decision.
This means that my ovaries (useless though they may be) are safe for now, and that the odds that cancer will recur if I only have a lumpectomy are... well, hang on a minute.
There is a more complex test they will do on the whole BR gene sequence, to see if I have either a known anomaly (and thus may still want to consider mastectomy) or even an anomaly on which there's insufficient data for a ruling. (Only about 4% of people turn out to have an "insufficient evidence to convict" gene variant, and more than half of those are ruled to be normal as more data is collected.)
All of this is a great relief, the way that, well, hearing you have an easily-cured cancer is a great relief. And I am grateful to live in a time when having this kind of information is even possible. I really feel I'm making an informed decision.
For certain definitions of "good"
Brief bit of good news! The genetic results are in, and I do not have any of the BRCA 1 or 2 mutations!
More later.
More later.
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Thursday, July 7, 2011
Signatures
OK, OK, I know it's all to protect my privacy. But I spent a full 20 minutes working with two nurse LPs this evening, filling up forms so that the Dana-Farber docs can share information with my PCP. A separate form for each doctor at D-F.
And this, after I signed a consent form at D-F allowing and asking them to share my information with my PCP. And I have been advised that I will still probably need to beat them about the head and shoulders (figuratively speaking) every time I'm seen there in order to make sure this happens.
I can open a bank account and apply for a mortgage with fewer bits of paper. Poor trees.
Endoscopy get as of 7/14. After that, there will be nothing left to probe.
And this, after I signed a consent form at D-F allowing and asking them to share my information with my PCP. And I have been advised that I will still probably need to beat them about the head and shoulders (figuratively speaking) every time I'm seen there in order to make sure this happens.
I can open a bank account and apply for a mortgage with fewer bits of paper. Poor trees.
Endoscopy get as of 7/14. After that, there will be nothing left to probe.
Wednesday, July 6, 2011
Preliminary events
So, today I saw the Gastro Guy, who is trying to figure out what exactly is wrong with my iron store.
You didn't know you had an iron store, did you? Well, you do. And if the iron in the store gets low, it's not available to your body for things like building nice, large, healthy red blood cells. Which is what happened to me last summer. Having been seen once by the Gastro Guy and twice by the Blood Guy, I am back with Gastro Guy for one last spin around the park before we all take our balls and go home.
Meaning, I'm having an endoscopy in the very near future, so that if there's an ulcer down there they can cauterize it and make it go away, putting me in much better shape to deal with breast surgery and chemo. Specially chemo, which tends to play merry hob with one's iron store. And if there's nothing there, I am clearly one of those anemic people who needs a bit of extra iron in my diet, and that's that.
And I wangled an appointment tomorrow with my PCP, to whom I will impart the names and numbers of the cancer docs, thus closing that loop.
Also today, I saw the priest of our church. He was fearing that I had more bad news, so he was actually quite relieved to talk about practical matters like the Sunday school.
And my funeral, which will be live-streamed. No, I am not joking. I don't expect to have one any time soon, mind you, but it's as well to be prepared.
You didn't know you had an iron store, did you? Well, you do. And if the iron in the store gets low, it's not available to your body for things like building nice, large, healthy red blood cells. Which is what happened to me last summer. Having been seen once by the Gastro Guy and twice by the Blood Guy, I am back with Gastro Guy for one last spin around the park before we all take our balls and go home.
Meaning, I'm having an endoscopy in the very near future, so that if there's an ulcer down there they can cauterize it and make it go away, putting me in much better shape to deal with breast surgery and chemo. Specially chemo, which tends to play merry hob with one's iron store. And if there's nothing there, I am clearly one of those anemic people who needs a bit of extra iron in my diet, and that's that.
And I wangled an appointment tomorrow with my PCP, to whom I will impart the names and numbers of the cancer docs, thus closing that loop.
Also today, I saw the priest of our church. He was fearing that I had more bad news, so he was actually quite relieved to talk about practical matters like the Sunday school.
And my funeral, which will be live-streamed. No, I am not joking. I don't expect to have one any time soon, mind you, but it's as well to be prepared.
Monday, July 4, 2011
Taking a shower these days is very wierd.
So is watching women in tight wifebeater shirts walk down the street. I've never stared a lot at other women's breasts, nor was I ever envious of people who were, as Louisa May Alcott describes Phoebe in Rose in Bloom, "of a large and wholesome growth."
But I'm feeling a little envious now!
But I'm feeling a little envious now!
Saturday, July 2, 2011
Well, it's right there.
Today I was driving home from some errands with Bravest, and a thought crossed my mind. I forget exactly what it was, but it was something that we might do next year, or maybe the year after that.
And then I had to think, "If..."
Now, of course the "if" in life was always there. (It starts with the second letter.) But that's not how our minds work. We don't make plans or commitments based on "if". We say, "Until we are parted by death," but we don't mean it until the time comes to do it. This is a mercy; if we knew how tenuous our hold on life really is, we'd be afraid to step out of the house in the morning.
I don't like this enlarged "If" in my life. I want to replace it with the "when" I had before.
But I suppose it's better than the far, far too many "sometime" statements that have taken up space and time in my life, from "Sometime I'll write a book," to "Sometime I'll throw out everything that doesn't fit any more." I can at least work on those while waiting to see if this "if" gets reduced to a more standard size.
And then I had to think, "If..."
Now, of course the "if" in life was always there. (It starts with the second letter.) But that's not how our minds work. We don't make plans or commitments based on "if". We say, "Until we are parted by death," but we don't mean it until the time comes to do it. This is a mercy; if we knew how tenuous our hold on life really is, we'd be afraid to step out of the house in the morning.
I don't like this enlarged "If" in my life. I want to replace it with the "when" I had before.
But I suppose it's better than the far, far too many "sometime" statements that have taken up space and time in my life, from "Sometime I'll write a book," to "Sometime I'll throw out everything that doesn't fit any more." I can at least work on those while waiting to see if this "if" gets reduced to a more standard size.
Friday, July 1, 2011
The "Special" Voice
Today I spoke with a woman at the genetic testing lab. They had called me yesterday, but we didn't complete our game of phone tag until this morning.
When she first answered the phone, she was very practical and matter of fact. Thanks for getting back to me, let me pull up your case, what's your DOB, can I put you on hold for a minute.
When she came back on, she had that "special" voice. The one that seems part compassion, part fear. And I couldn't figure out why. I mean, she must spend all day talking to breast cancer patients, and I knew she wasn't going to tell me anything because (based on the convoluted rules of the Boobeaucracy) any results have to come through the geneticist at Dana-Farber. So why the funereal tones, as if she was about to impart dreadful news?
Then she told me what the costs were going to be for the out-of-pocket expenses of the tests, and I realized what was going on. She has to deal all day, poor thing, with people who don't understand why the tests cost so much, or who do understand and are mad at her employer for patenting a sequence on the human genome. Or who don't understand why it's important to have the tests at all, who only agreed to it on the say-so of their doctors, and who refuse to pay for it.
Hence the please-I-really-don't-control-this-stuff-please-don't-yell-at-me voice combined with the oh-god-I-can't-be-rude-to-this-poor-woman-she-has-breast-cancer voice.
So I was brisk and polite and gave my permission to bill us. Thanks to Bravest, cost is no object.
I didn't like the way she nearly whispered, "Thank you, and you have a great Fourth of July," as if such a thing were impossible, but other than that, no harm, no foul. And I'm sorry she has such a dreadful job.
This 4th, I may even eat TWO lobstahs.
When she first answered the phone, she was very practical and matter of fact. Thanks for getting back to me, let me pull up your case, what's your DOB, can I put you on hold for a minute.
When she came back on, she had that "special" voice. The one that seems part compassion, part fear. And I couldn't figure out why. I mean, she must spend all day talking to breast cancer patients, and I knew she wasn't going to tell me anything because (based on the convoluted rules of the Boobeaucracy) any results have to come through the geneticist at Dana-Farber. So why the funereal tones, as if she was about to impart dreadful news?
Then she told me what the costs were going to be for the out-of-pocket expenses of the tests, and I realized what was going on. She has to deal all day, poor thing, with people who don't understand why the tests cost so much, or who do understand and are mad at her employer for patenting a sequence on the human genome. Or who don't understand why it's important to have the tests at all, who only agreed to it on the say-so of their doctors, and who refuse to pay for it.
Hence the please-I-really-don't-control-this-stuff-please-don't-yell-at-me voice combined with the oh-god-I-can't-be-rude-to-this-poor-woman-she-has-breast-cancer voice.
So I was brisk and polite and gave my permission to bill us. Thanks to Bravest, cost is no object.
I didn't like the way she nearly whispered, "Thank you, and you have a great Fourth of July," as if such a thing were impossible, but other than that, no harm, no foul. And I'm sorry she has such a dreadful job.
This 4th, I may even eat TWO lobstahs.
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