What They Knew, When They Knew It, and Why We Weren't Told Sooner

Ha!  Bet you thought this was going to be a political post, right?  Something about the war maybe?  Fooled you!  This is about the pathology of the second evil brain I was growing tumor they pulled out of my head on March 13.

Friday afternoon I had a follow-up appointment with my fabulous brain surgeon.  He was going to look at the healing progress of my incision, maybe but not likely take out my staples, and give me the findings of what I believe he called the "tumor board," a panel of experts who would look at the pathology of the resected tissue and give recommendations for further action.  This appointment did not happen.

What happened was that we got two automated phone calls from Lahey Clinic.  The first reminded us of this follow-up appointment.  The second, which arrived on our answering machine on Thursday, peremptorily informed us that we had another appointment "at Lahey Clinic," no more specific than that, half an hour in advance of this other one.

My true love got on the phone on Friday.  We were told we had to go see someone in the financial office before we went to see my surgeon.  "We had a referral for the surgery," my true love pointed out, "and everything is okay with that, right?"

"Oh, yes," he was told.  "There's no problem there."

"Um, okay."

So we did what we were told.  We went to Lahey.  If I were legally allowed to drive that soon after my surgery (which I wasn't; they want me to wait a full two weeks post-surgery), I would have gone to this appointment myself; I really was feeling that much better, and really did have all my faculties back by then.  So I told my true love that I could handle the financial officer myself, and he went off to do something else at the admissions desk.  I'm not sure what, but I have the impression that if you go to Lahey for anything you have to drop by the admissions desk first, get checked in and told where to go.

The financial officer was a plump blond woman in her 30s or 40s who seemed to be very put out just generally.  I imagine she encounters all kinds of frustrating scenarios in her week, and this was almost 4:00 on a Friday afternoon, Good Friday no less, which is a day of great meaning to a lot of people here and one which most people prefer to work only as a half-day.  So I don't really blame her for her peevishness.  What I do blame her for is how adamantly she insisted on what proved to be a wrong idea.

"You need to have a referral for today's appointment."

"We got a referral before I had surgery."

"Well you need another one for today, but you don't have one, so you can't have the appointment unless you sign a sheet accepting financial responsibility for the appointment."

"Well then we have a problem, because I don't have a job, assets, or an income, and I'm not signing any such thing."

"Well then I can't let you have the appointment."

"Um, honey?" I called, poking my head around the column dividing the financial office from the admissions desk.  "I guess I need you after all.  Something about a referral."

At some point in their conversation, we learned that "The surgery was inpatient.  This appointment is outpatient.  They're totally different."  This was told to us in a voice and with a face indicating we should have known this already fergodssake.  I was told that it was my fault this had happened because I "chose to go out of network."

I laughed.  "No I didn't."

My true love laughed.  "No, she really didn't."

See, the financial officer had not seen me in my hospital bed two and a half weeks before, hopped up on decadron, scared for my life and missing 40% of my words, begging my fabulous brain-surgeon-to-be to move his practice over to Emerson, the best hospital at which I've ever been treated and the one to which I now run first whether I've accidentally sliced open my hand and need stitches or have a headache so bad it actually scares me even though I've been getting migraines since I was three years old.

But, whatever.  Right.  I chose to go out of network.  Okay.

Once upon a time I ran the Friday morning seizure and headache clinics over in the greater Friday morning neurology clinic over at Massachusetts General Hospital.  When patients showed up without referrals for their appointments, I would hand them the phone and they or I would call their primary care physicians' offices.  The administrative aides in those offices would call the insurance companies and get the referrals over the phone, on the spot, or call me back with the referrals, usually within fifteen minutes or so.  So,

"Let's call up Dr. D's office," I suggested.  "Maybe we can fix this over the phone right now."

The financial officer looked at me blankly like I was on drugs.

My true love looked at her, looked at me, and said, "No, you know what?  I don't think we're going to be able to fix this right now."

"Oh, yeah, I guess you're right.  It's almost 4:00 in the afternoon on Good Friday, after all."

My true love then, just for kicks, began to ask the financial officer what went wrong and how we could avoid scenarios like this in the future.  I snorted, "Not like there'll be a future; this is my last appointment here.  Everything else is going to happen over at Emerson after today."  But he continued gently asking, as if there were a point.  This very much confused the financial officer, who reddened and sputtered a bit initially and then explained her take on what had happened, but I was past listening and already out the door in my mind so I don't know exactly what she said beyond what I have already told you.  We thanked her and left her office.

Because I have run a clinic, I know that people -- doctors, nurses, PAs, etc. -- actually prepare for this kind of meeting, and I felt bad about not showing up.  I worried that my wonderful surgeon and his team would think I had blown them off.  So on my request, we went upstairs, and I explained to my surgeon's staff what had happened.  I told them I would call my primary care physician on Monday and get a referral and make a new appointment.

They were very surprised that this had happened to me.  "You call us just as soon as you get that number, okay?"

"I will," I told them.  "I just wanted to apologize for the mix-up and the wasted time."

"No need," they assured me kindly.

After that, my true love and I went to Starbucks.  After that, we went to the local mall, where I had Chick-Fil-A for the very first time in my life and eventually we bought an ice cream maker at Macy's.  After my initial rage, and then laughter with my sister on the phone over the preposterousness of all this, I actually felt pretty calm, not put out very much at all.  Whatever the thing in my head had been, it would still have been come Monday, and there was certainly not going to be anything to do about it over the weekend, if ever.

Monday I called my primary care physician's office.  I was informed that it was my fault for going out of network, that I needed to get the referral from my surgeon's office, and that I should really call Network Health, the free-to-me, Commonwealth-sponsored insurance plan I was also told I am paying for, to get the referral and also find out what my benefits were.  This was very odd, because (a) I have never heard of anyone but administrators in primary care physicians' offices obtaining referral numbers, and (b) the woman who told me this was the same woman who got the referral number for my surgery for my true love as my health care proxy when I was too mentally incapacitated to interact with doctors office administrative aids myself.  But I played along.

I called my surgeon's office.  "We don't get referral numbers," I was told.  "We never get referral numbers."

"I didn't think so, but this is what I was told to do."

"But you don't need a referral number anyway.  You're on 'global post-op,' so this visit was covered by the initial surgical referral.  Both the doctor and his PA were very surprised to hear that this had happened, and the PA wants to speak with you."

The PA and I exchanged apologies, condolences, and expressions of pissed-offedness.  Then I made an appointment for 9:00 this morning to have her look at my incision, probably take out my staples, and tell me what the hell that thing was anyway.

My true love dropped me off on his way to work.  I was going to walk, but he was going in to the office anyway for the first time in a week, and he worried that I would be too fatigued if I had to walk both there and back.  Now that I am off decadron, a crazy-making steroid prescribed for brain swelling, I actually am capable of a normal amount of post-brain-surgery fatigue, sometimes dropping with no warning into six-hour naps.

"So?  What was that thing, anyway?"

"Oh, it was melanoma."

"F*CK!"  I shouted.  Then, quietly, "Sorry."

"No, it's okay.  I was very sad when I heard."

"Yeah, that's a big bummer.  But you think you got it all, clean margins whatever that means for brain stuff, and there aren't any others in my brain that you can see right now, right?"

"Yes, he's very happy with the way it came out, just that little bit sticking to the membrane which he thoroughly burned."

"Scorched it."

"Yep.  And no, there aren't any more.  So what he thinks the thing to do is just keep an eye on it, have you come in in a month and get an MRI, and then have you come in in another three months and have another MRI, and then see what it does."

"Okay.  I can do that."

"He's going to call you to talk it all over with you."

"That's very kind of him."  And it is.  See, my not having that appointment at Lahey on Friday and him talking to me on the phone mean he and Lahey don't get paid for this consultation.

The PA took out my staples, which she was probably going to do today anyway.  I regret only that I forgot to ask for them so I could make jewelry out of them, but my mind was already kind of racing forward to what I would do next.

Then I walked home.  I walked home in a prosthetic limb which is now too big for me because I've lost 10 pounds since September just getting off my ass more and watching my diet, and then I lost another 10 pounds in one week having a brain tumor and being put on steroids.  This means that every step I take my leg falls off unless I wear my velcro strap and narrow-leg pants tight enough to keep it from falling too far when I lift my leg.  It also means that every step I take on my right side is supported by my girl parts and my butt hole across a narrow strip of the flexible polycarbonate my socket is made of.

But it was a beautiful day, and I had some nervousness to work off because every time I am told that whatever it was that just got tested or hacked out of me was indeed another melanoma it shakes me to my core, every time even though you'd think I'd be used to it and totally cool, suave and unsurprised by now.

All the pictures illustrating this post came from that walk.

I went home and waited for the doctor to call.

"It really looked exactly like a meningioma," he told me.  "And it was exactly like a meningioma in cell structure and architecture.  But then the lab did some stains and found a protein which only occurs in melanoma.  So it was a very strange kind of melanoma."

(Or, as my true love had told me when I told him, "It was the f*cking luckiest f*cking brain melanoma ever."  And don't I know it.)

They still have no idea how old it was, how fast it grew, why it got all inflamed all of a sudden or anything else.  There really is nothing to do but watch and wait.

So.  Nothing has really changed.  I have a bunch of masses in my lower abdomen/pelvis that could be cysts, fibroids, or melanoma, or some combination of all three, or something else entirely.  I will be getting a PET scan to find out what other cancerous masses I have in my body right now, how many, and exactly where.  Because of a hereditary peri-menopausal hell which I had already begun to experience, so bad that it caused my sister, my aunt and my grandmother all to have hysterectomies when it happened to them, I had already been planning to go see someone about that this year, just like weight loss and increased fitness had me already thinking of calling my prosthetist about getting fitted for a new leg.  But then I got a brain tumor, so now everything has to be sped up before I can decide what, if anything other than watching and waiting, I want to do -- everything but getting a new leg, which, though suddenly more urgently desired, will have to wait until I find out what I need to find out and decide what I need to decide because what I do may also change my weight further.

The three weirdest weeks of my life with some of the most magnificent gifts and terrifying horrors and bizarre annoyances I've ever experienced have passed, and nothing has changed except that I have, well, new homework assignments.  Sort of.

I can't really complain.  Other people have it so much worse than I do.  And yet I must confess, I'm pretty dazed and very tired.

I think I will spend tomorrow reading other people's voices and mostly not talking myself.

Sorting.  Sorting.  Sorting.

The machine is sorting.

Meanwhile, it is spring, and the hundred daffodil bulbs I planted two autumns ago to beautify an ugly parking strip are returning.

And soon there will be lilacs.

Comments

[Ron Sullivan]

As you said: "FUCK!"

And also, yeah, WTF can you do but wait and watch and suck up some buds 'n' sunshine?

And. The same damned thing could have happened with Blue Cross/Shield, you know. Yeah, you do know. I have one of those Thee-O-Ries about how they save money by strategic incompetence, right along with the official gummint bureaucracies. Black holes, energy-sucks, all of them.

Jeannie's doctors, once we'd kidnapped her to the transplant hospital in Miami, had the same take, by the way, as yours. One of them said to her, in my presence, "I come to work every day to help people get better. That's all I'm concerned with, and whatever happens upstairs, I'm going to work to get you better."

Oh gods.

Those folks tried. I'm glad you've got your docs on your side too. I'm burning a pinch for the outcomes of your next tests.

Is there any way of padding that socket? Man, I thought it was bad to walk on sore knees. ow.

I emailed my sibs about your blog, just btw.

[Sara]

Yes, Ron; you are absolutely right. This could have happened on any insurance plan, private or public, and it does, every day. And this is actually one of the hidden costs of health care. Someone is paying all these people to put forth and adamantly defend wrong information about how to navigate overly complicated systems of paperwork in every office that has anything to do with health care -- insurance offices, doctors' offices, financial offices at hospitals... It's a ubiquitous problem. And it's part of the preposterousness my sister and I ultimately laughed about together. La plus ça change, etc., n'est-ce pas?

Re the leg thing: You know, I was told never, ever to stuff anything into my socket, that I could do tremendous damage to my stump somehow if I did that, and I would NEVER advise another amputee to do anything like that, but --

Ballet dancers stuff lambs wool into toe shoes for cushioning. There is a dance supply store in West Concord, and the next time I go grocery shopping, I am going to pick up as big a wad as I can find.

Meanwhile, Vitamin E oil is my very best friend. Sooooooothing. :)

Big love to you and your siblings.

[laurie]

Fuck, indeed. I don't have the words, except to say - may the damn cancer stay the hell away. We need your creative, funny, brilliant presence to be around for a long time.
And the administrative nightmare you mentioned? I am convinced that this is why the per capita health care costs are so much higher in the US, despite not having a single payer system. I think it is outrageous that you had to wait four whole days to get your news just because someone screwed up the paperwork.
And the photos? Gorgeous.

[Michelle]

Mah. What a pain in the socket. Thank you for sharing the lovely photos though. I posted some of spring around here yesterday that you might enjoy as well.

[leslie]

Well yeah, fuck about sums it up. Somehow the whole referral garbage just adds insult to injury - it's enough to have too deal with the health issues without the bureaucratic bs on top of it. I hope they did indeed get it all and you can go on to deal with other stuff like enjoying the daffs and getting your leg/socket improved. This was not the result anyone wished for you, that's for sure!

[B. Dagger Lee]

Girl, I've wrapped you up in my thoughts so you are covered with gold honey and glory.

yrs, B. Dagger Lee

[Jana]

A few daffodils for you, my friend. These are particularly special flowers, growing in the area near Julian, CA that was swept by wildfires last fall (SoCal is now being swept by wildflowers, one of thee most brilliant seasons ever).
:)

[kathy a.]

hi, sara. over from ron's place. there aren't really the right words, but what you have been going through sucks. and you are amazing and strong.

[Sara]

Thanks, folks.

There are things to bear in mind here. First, they got the fucker out, and there aren't any more big enough to see right now. Second, it was stuck to the outside of my brain, totally self-contained, not invasive. Third, they still think it grew very slowly because they generally characterize my particular case of melanoma as slow-growing. And now we are going to be looking for it to grow back or for others to rear their ugly heads, so it's unlikely any others (unless or until an inoperable one shows up; perish the thought) will have any chance of getting as far. So as much as it sucks that the melanoma has found my brain, my very favorite body part, suddenly skipping over all the lush prospects between my pelvis and my head, and that I now have to do extra work to keep it out of there, if possible, from now on, things still could be a lot worse.

That said,

Laurie -- Yes, the administrative costs are part of the problem, especially, as Ron points out, when private insurance companies seem to deliberately hire and promote incompetent or simply obfuscatorily inclined individuals specifically as a cushion against bill paying. Every time an insurance company doesn't have to pay one of our medical bills, it makes money. And no one should believe for an instant the insurance companies aren't aware of this. And these are just some of the reasons no one in this country really knows the actual cost of any given procedure.

I'm glad you like the pictures. There are a couple here I really love, too. And you know, these photos wouldn't exist without that walk, which wouldn't have happened without everything else.

Michelle (Bleeding Espresso) -- Yes, you nailed it. It's just a big fat pain in the -cough- socket. Really, nothing has changed, because watching and waiting and the occasional surgery are most of what I've been doing ever since I was initially diagnosed with melanoma. Now I just have to watch more intensely, which means more of my life spent in hospitals and doctors' office. Still, though, it's not so bad.

Leslie -- Thank you. No, we really were expecting it to just be a meningioma, which, by the way, if you're going to get a brain tumor at all is totally the kind to get -- slow growing, non-invasive, non-metastasizing, just a freakish little growth like a mole only on your brain. Still, I'm very lucky that if it's not a meningioma, at least it seems to have acted exactly like one.

B. Dagger Lee -- Thank you, sweetie. It's nice to see you here.

Jana -- Thank you! Spectacular! Fascinating how the post-fire landscape of CA looks so much like the early spring landscape of MA, all bare branches and new things sprouting.

Kathy A -- Of course I know who you are. Thank you so much for stopping by and saying such kind things. What I'm going through, though, I assure you does not suck nearly as much as what many people go through with this disease, not to mention all the other "slings and arrows of outrageous fortune that flesh is heir to."

Shoot, nobody's shooting at me, for example. (Not right now.) So really, I count myself very lucky. Just a little freaked out, once again, and pissed on everyone's behalf that we don't have a health care system in this country that will take care of everyone as well as I've been taken care of, minor bureaucratic silliness and all.

[elizabeth]

Well, I guess in all my research in all sort of illnesses, I kind of missed cancer because I had to google "Melanoma" after you said F*CK - because it sounded like a sort of friendly word, maybe a varient of lily or orchid. But it turns out that is incorrect as I found out and yeah, I think finding out that you had a giant chunk of cells gone pirate/mercenary rampage in your head would be something rather scary indeed. Since I have yet to find a biofeedback meditation to keep my cells in line.

I think however, like all things which you seem to take so calmly and would be freaking me out, that over time, it will just be the, "yeah, I've got to keep checking for the 'noma in the head" - becuase one thing I have learned about illness/disability are what CAN become emotionally commonplace.

Which sort of moves to the next topic of what SHOULDN'T be commonplace, which is an red and oozing sore that goes from your anus to your area 51. And the image of you stomping around, grinding your prosthetic into that particular region, which quite honestly is probably NOT the toughest skin in the word since we tend not to pick blackberries with it, or clean cutlery or other 'skin toughening' techniques makes me squirm a bit. So please DO something, so that you may enjoy the walk for some time to come. And so I can stop reading about it and squirming.

And to be quite honest, if you were "cool, savvy" etc about hearing that you had melanoma in your BRAIN, maybe there WAS some damage. But I am glad that you are so obviously still YOU (no, that wasn't a direct insult, why do you ask), and able to enjoy things like springtime.

Rock on?

[Sara]

Okay, for the record, now that my decadron-inspired acne and rashes have almost completely cleared up, NOTHING is red and oozing, not even the areas most pressed just now by my oversized socket. This is because (a) I've been wearing my girdle, and (b) Vitamin E oil is my best friend. Truly.

Second -- not to give TMI or anything to the world at large but anything to help you sleep nights -- I am now on the bloat leg of my cycle, so I am gaining temporary water weight everywhere, so I am suffering less for this week at least.

Third, tricycle season has returned! It's still cold, but there's no snow or ice on the roads (for the moment), so I've been able to run local errands mostly sitting down and still getting exercise. Yay. You of all people know the value of keeping things moving however one can.

As for suaveness, you know, after all these years (decades) and all these same lab results (it's ALWAYS melanoma, whether they're taking it out of my brain or letting me know that when they cut off my leg they also took out some extra lymph nodes right next to the hacking off point that looked affected, and oh yeah, they were), it just surprises me a tad that I never respond with anything but the same wobbly-kneed, icy black terror of my very first diagnosis. Part of me thinks I should hear, "Oh, it was melanoma" and just kind of shrug and say, "Oh, yeah, well what were the odds it would be anything else?" or "Eh bien, c'est la vie." Or how 'bout a nice, polite, inoffensive to others, "Oh, well that's disappointing."

But no. It's always terrifying, and I always fucking curse.

And now that I've let the F-bombs in, I've probably blown my nice little R rating and no children will every visit my site. Hélas.

I think I shall baroque on, if that's okay. I feel the need for some harpsichord music.

[Dee]

Dear Sara,
I've been reading your blog off and on through links from Jeanne's site in Seattle. I just want you to know that you're one of my heroes, even though you say that you just want to live as normal a life as possible. I'm so sorry that you've had such a hassle with the bureaucracy, but am glad that you found humor in the whole situation. It's almost better in that case to expect such hassles, I guess.
Also, it's a good sign, I think, that you still get freaked out about the melanoma diagnoses . . . it'd be more scary if you accepted it as an everyday, commonplace experience. By treating it as no big deal, I'm afraid that nothing would ever be done to improve prevention and treatment of diseases. In the last six months, I've found out that: 1) I have breast cancer again in the same side as before; 2) that instead of it being small (3mm), there were tendrils of it throughout the breast tissue; 3) that the red rash I noticed under the tissue expander on the right side was cancer spreading via the lymph channels (i.e., they didn't get it all with surgery); and 4) that it has also apparently metastasized to my bones. Each time, my heart raced, I cried, and then cussed. It sucks and we should be able to acknowledge that it sucks and it's scary, because it is. We shouldn't get complacent about cancer.

But, what I most admire is your ability to live as normal a life as possible. I had a period back in December when all I thought about was cancer. The opportunity to do some work, while I resented it at first, was a good distraction and reminded me what my life is about. Cancer can recede to the background. It's always there, but I have too much to do to allow it to take over my life.

Last week, I went to the southern Oregon coast to see an old and very dear friend of mine. It was a longish drive, but the scenery was absolutely beautiful! I'm not the photographer that either you or Carver are . . . but there's some shots of these fantastic rocks on the coast of Bandon, Oregon that you might like at: http://deeupdates.blogspot.com/2008/03/my-wonderful-quick-trip-to-bandon.html.

[Sara]

Lovely photos, Dee. Thanks. :)