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3rd MRI

Jan. 22nd, 2009 | 09:20 am

No growth, no change, no "new abnormalities", "remains stable".

I think that means I don't have to have surgery?


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A decision for now

Oct. 19th, 2008 | 07:11 pm

I've decided to go with the wait-and-see approach advised by Dr. Chandler, at least for now. I'd need time to make preparations for surgery no matter whether it's done sooner or later, so I wasn't planning on scheduling anything sooner than a month from now anyway.

I made an appointment for another MRI followed by a second consultation with Dr. Chandler in January, and I will pay very close attention to my eyesight between now and then to see if I notice further deterioration in that time.

If my eyesight stays the same, then there's no point to surgery.

If the MRI shows no further growth of the tumor, then there's no point to surgery.

If there are changes, well then, that would be reason to risk surgery. Otherwise, there seems to be no compelling reason to take that risk.

But I'll go ahead and start making preparations in case I do end up having surgery. This way I have (hopefully) three months to prepare.

I feel comfortable with this decision. I can always change my mind, and meanwhile, no harm done (?).

At least let's hope so.

I told Dr. Chandler that I don't want to make a decision based on fear.

I don't think that this one is.

At least, not entirely.

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2nd MRI

Oct. 18th, 2008 | 03:42 pm

So this time I wore that same elastic bra with no metal parts, a purple t-shirt, and my favorite comfy bright red and purple tie-died elastic waist drawstring pants. The technician asked "Are you wearing a bra?" "Yes, but it's all elastic, no metal - and these pants have an elastic waist, no zipper" I told her. "Well, you're all set then" she said, and that was the end of it.

Yeesh. I still think they should tell first-timers that they can wear their own clothes if they prefer, as long as they wear outfits with no metal parts. They go to all this trouble to try and help people be comfortable. They tell you in the brochure that you can bring your own CD's to listen to if you want. Why didn't anyone think to mention clothes? Clothes are important! (says this former seamstress). What you wear affects how you feel. I still say those horrid hospital smocks are infantalizing. We are grown-ups. Let us wear our grown-up clothes, and not have to parade down the hall in ill-fitting, drafty paper pajamas.

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2nd consultation

Oct. 16th, 2008 | 11:32 pm
mood: unsettled

Okay, now I don't know what to do.

Dr. Chandler said he can't tell me what to do (of course), but he favors wait and see rather than surgery right now. The complete opposite of what Dr. Lesniak said. According to Dr. Chandler, surgery on this tumor is much riskier than had been my impression from Dr. Lesniak. The tumor is wrapped around the optic nerve and the carotid artery and so this surgery would carry a larger risk of blindness and/or stroke. Larger than Dr. Lesniak seemed to think. Scary!

And oh yeah, Dr. Chandler said that once vision is gone, it's gone. So no matter what I do or don't do, my right eye is not going to get any better, ever. Which is pretty much what I had thought anyway. But there he goes, flat-out contradicting Dr. Lesniak again.

Dr. Chandler said that since, according to my purely subjective and not very carefuly observed recollection, my vision loss seems not to have gotten worse over the past two years (I've spent the past two years in fear and denial before finally going to get it checked out, so there is no objective corroborating data from a doctor), maybe the tumor is stable and not growing.

I din't know such a thing was possible. I thought tumors just grew and grew, even if they grow slowly. I didn't think tumors ever just stopped growing on their own. But that's what Dr. Chandler said. He said basically not to mess with it if it isn't getting worse.

So he advised another MRI and followup visit in 3 months, followed by MRI's every 6 months thereafter. And for me to pay close attention in case the vision loss gets worse, which would then mean surgery in order to save the remaining eyesight in my right eye. But very risky surgery.

So I'm not sure what's the best thing to do. I was terrified of surgery before, I'm even more so now. I am perfectly happy to wait and monitor and not schedule any surgery just yet. And tentatively, that's what I've decided to do.

But I wonder if I am just postponing the inevitable, and by doing so, endangering my remaining eyesight.

And I still don't know what criteria to use to decide where to go for surgery, if (as I believe likely), I end up having to have it done anyway. I didn't particularly like either of these guys. Would it kill them to smile? But that's not really a valid criticism, is it? Isn't it a question of who has the most skill and the most experience with this particular type and location of tumor? Does it matter if they have any bedside manner or not? A neurosurgeon could be sweet and charming as all get-out, and not be skilled enough to save my brain.

I loved the atmosphere and the energy at Northwestern about a zillion times more than that at the U. of C., but that's not really a valid criteria either, is it?

(Although Dr. Lesniak did specifically recommend Northwestern *rather than* his own hospital, the U. of C. I thought that was kind of odd.)

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1st consultation

Oct. 15th, 2008 | 06:07 pm

Today I had a consultation with Dr. Maciej Lesniak, Associate Professor of Surgery and Director of Neurosurgical Oncology at the University of Chicago Brain Tumor Center.


I know that's not as impressive as the guy who worked on Ronald Reagan, but I was kind of impressed anyway.

He said that given my age ("fairly young" he said - hah, he's cute!) and the location of the tumor (which is probably a meningioma), he advises surgery, which won't get all of it, so radiation to follow. There is a risk of the surgery itself causing permanent blindness in my right eye (worst-case scenario), but even if that happens my left eye should be fine. There is also the possibility that vision in my right eye (which is right now down about 40%) might actually improve.

He mentioned other risks, which of course include seizures, coma, and death, but we knew about those, right? I asked him for the best-case scenario. He said hospitalization for 3-5 days after surgery, another 4-6 weeks recovery at home, 80% of the tumor surgically removed, vision stable after surgery and slightly improved over subsequant weeks, radiation afterwards, the tumor stabilized and "never will be an issue for you again".

"Well, let's shoot for that, then" I said.

I told him I was trying to get another appointment at Northwestern University Lurie Center (I'd spoken with a nurse there yesterday, she'd taken my info, had me call the MRI center to have them fax the radiologist's report over, and said someone would call me back), and he recommended Dr. (James? David? can't remember...) Chandler as a surgeon who has particular expertise with this type of tumor in this part of the skull. Lo and behold, when I got home this afternoon, there was a message from Carmen at NU, with an appointment for me to see Dr. Chandler tomorrow! Is that cool or what?!?!

Wait a month?!?!?!?

I DON'T THINK SO!!!!!!!!

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The medical maze

Oct. 14th, 2008 | 09:13 pm

I went to the MRI center, the opthalmologist's office, and the optometrist's office, and got copies of all the exam reports that have been done so far. Then I made a few sets of copies of the whole bundle so I'll have them ready when needed. I got a CD of the MRI imaging too, and made a copy of that. I got my groovy binder and my sheet protectors and my mini cassette recorder and filed away everything I've got so far, all nice and neat.

Then I started on my list, making phone calls.

Wait a month? I don't think so.

I have an appointment tomorrow morning.

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Taking charge!

Oct. 13th, 2008 | 04:13 pm

I left a message for the opthalmologist to call me back today. I put in a call to the MRI center for a CD and copies of the radiologist's report to be made, and I'll be picking them up tomorrow. I'm taking the day off tomorrow and I will be contacting the other BT centers right here in Chicago (5 of them!).

I do want to tell my parents before the week is out. I just want to have something at least a little more concrete to tell them than what I know now.

Thanks so much to all of you. I would be lost without all this great support and advice. From the bottom of my heart, thank you all!

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Oct. 13th, 2008 | 08:37 am

The next available appointment with this neurosurgeon is Nov. 11. Nearly a month from now. I don't even know what kind of benign tumor I've got. Is it a glioma, astrocytoma, meningioma? I don't know my prognosis. I don't know what I need to plan for. I don't know anything. I can't wait a whole month to find out something so basic! Is this normal? Everything else has happened relatively quickly. I saw the first eye doctor on Sept. 23, the second eye doctor Sept. 24, and then the opthalmologist on Oct. 3. (I thought he was a neurologist, but he's an opthalmologist. You see how naive I am about doctors!) All three of them were "You really need to do this pretty soon." So I had my first MRI on Oct. 9 and the diagnosis of "benign golf ball sized tumor" the next day. This was in a cell phone conversation that lasted 4 minutes and 37 seconds. And now I'm supposed to wait an entire month before I can find out anything more? Is that standard?

My snowbird parents, who in the summer live about 40 minutes away from me, are planning to leave for Florida in a few weeks. I haven't told them yet. I want know as much as possible about what this is before breaking the news to them. I don't want them to have to go through this preliminary uncertainty with me. I was hoping to have some solid info and be able to tell them by the end of this week. I'm just really astounded that I'm supposed to wait a month, not knowing any more than I do now.

I don't think this is acceptable. I'm calling the opthalmologist back this morning.

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Information is power

Oct. 13th, 2008 | 12:19 am

Thanks so much to azale for the links to informative websites. This book looks particularly helpful for this stage in my journey. I was startled to see that it's by Dr. Paul Zeltzer , because this Dr. Paul Zeltzer is one of my favorite minor Scrubs characters. Do you think maybe he moonlights?

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scary research

Oct. 11th, 2008 | 10:48 pm

From WebMD:

"Survival for patients with benign tumors is usually much better for all age groups, but reliable data is sparse."

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