h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I never did call the tumor Dubya.

But I just realized it has a perfectly good name, CLIVE!


Clive L. Chordoma. (It's a "clival chordoma")


Anyways, Clive has returned and now he's ing up my other eye.

Dang. What's the likely prognosis/treatment?

Possibly radiotherapy again, maybe surgery for the tumor in my cavernous sinus. Likely outpatient strabismus surgery to align my vision more forward. "Doing nothing" is still an option as these kind of tumors are slow growing and non-malignant.

My left eye is now also not turning to the right (my right eye won't even point forward anymore. Also my pupils are different sizes and my left eyelid is drooping enough to obscure my vision when looking left. I often have a mild headache, especially early morning.

None of this is dire and I've been dealing with this for 16 years, so I'm not overly troubled. So far this hasn't effected the vision of each eye directly. I get regular peripheral vision and color blindness tests. Age is effecting my vision more directly. Buying trifocals for eyes that don't cooperate is more difficult (and my company's vision insurance doesn't cover anything even remotely affected by "medical" issues so I'll be dropping that this year.)

Progress:

I've met with the team at M.D. Anderson Cancer Center and they've made a plan. I'm scheduled for surgery early December. This will likely be followed at some point by Stereotactic radiation (Gamma knife! Sounds like something NERVE would equip on Rei Ayanami's Evangelion to battle the Angels attacking Tokyo-3!)

It's not so much they'll be following the surgery up with radiation as much as the surgery will be preparation for the radiation. The tumor is at my optic chiasm, the point where my optic nerves cross. The surgeon's goal is to remove enough of the tumor to allow a bit of room for the radiation. Previously I went through surgery and Proton radiotherapy. Both Proton Radiotherapy and Stereotactic Radiosurgery are highly precise methods to treat cancers, especially those in critical locations like in and around the brain. I'm still not quite sure why they're choosing to use the Gamma Knife over Protons this time. My best understanding at the moment is that while both are very accurate, I believe Proton is more accurate but is a much higher dosage. My previous Proton Radiotherapy was 40 doses over two months (or at least 35, I recall 8 weeks but my doctors mentioned 7 weeks). The Stereotactic Radiosurgery will be only 1-3 doses. It could also be my previous proton therapy precludes another round of proton therapy.

Anyhoo... I'm much more bothered by the surgery. My last surgery was brutal. Recovery was at least a month of misery. I'm hoping this one isn't as bad, but I'm not optimistic.

Oh... and if that weren't enough angst already, I've got to deal with the bureaucratic hassle of Short Term Disability (STD)[snigger] paperwork and working out exactly when to start using it. Last time I was required to use up ALL of my Paid Time Off (PTO; no longer do we distinguish between "sick" time and "vacation" time and of course we've lost hours over the years.) I can only carry over 80 hours from one year to the next, and it's complicated by the fact that December's accrued PTO isn't applied until a few days into January so I can't simply use "all but 80", I think it's something like 14.4 hrs per month, but I'll have to check... maybe it's only 7.2... we recently switched from biweekly pay periods to monthly pay periods... my head hurts already. Anyway, I was informed that now I can receive 60% of my pay via STD (snigger) while using 40% PTO. What I don't know yet (I really don't want to look through all the forms I was sent via email) whether only being on the payroll 40% of my normal hours will mean my insurance premiums and taxes will still be deducted or whether I have to account for those out of pocket.


Ah, it! Who wants a beer?

DREAD!

I'm less than a week away from surgery. All I can recall from my previous surgery for this tumor is that I was miserable for at least a month. Nothing my new doctors have told me leads me to believe this will be better. It will likely be worse, and with more long lasting effects.

Yeah, I'm not worried about my nose being possibly reshaped. I'm not a handsome man to begin with.

I may lose some sense of smell. OK... not ideal, but acceptable.

My front two teeth may become numb. OK... not ideal, but I can cope with that.

They may, very likely, pierce into my cerebrospinal fluid. I've dealt with that before. It was quite unpleasant, but it was a temporary condition.

I'm quite concerned with possible blindness. Oh yea, there's always the possibility of death... yeah, can't be bothered with that.
Death is something you never have to cope with... you're done. Blindness is something you have to actively manage. You have to learn new skills and find a new way to support yourself. Blindness truly frightens me.

My vision is already quite diminished.

For the last few years I've mostly been relying on my left eye as it still had full range of movement. My right eye was my dominant eye and still has nearly 20/20 far vision. Age has greatly diminished my near vision in both eyes and my far vision in my left. My left eye also lost some range of motion, but that soon became inconsequential as now I cannot even open my left eyelid without using my fingers. It's also dilated so it's really no longer useful anyway.

So my range of clear vision is my right eye looking over the bridge of my nose.

Obviously, I'm selling my motorcycle.

Anyway, on Monday I have seven to a dozen appointments in preparation for surgery on Wednesday. I'll be in hospital recovering until at least the following Sunday or Monday. I'll have splints in my nose that I'll have removed weeks later.

At least I don't have to worry about abiding visitors during my in hospital recovery this time.

Sending best wishes

Hope it all goes well BG.

Thanks. I gotta be at the hospital in Houston at 6:00a. And we're expecting a line of thunderstorms coming through Houston at 6:00a.
It's normally a 40-50 minute drive.

Oh, wait. this isn't your weather thread.

Relief!

I survived the surgery with my vision (what's left of it) intact.
Today I got out of bed for the first time since Wednesday morning. They've clamped off the lumbar tap and will likely remove it later today. I'm feeling SO much better than I was a few days ago. Wednesday evening thru midday Friday, with just a few brief exceptions, i was absolutely miserable with a headache so bad I could barely answer the most basic questions. My existance was all focused on the pain. (I rated it a 7 as I think 10s are reserved for pain like being burned, absolutely imtolerable.) I was pleasantly surprised the headache subsided significantly by Saturday. The last time i did this, had parts of my skull scooped out, I was quite miserable even after I waa discharged and even had trouble walking. Hopefully recovery will go better this time.

Very glad to hear it, BG Is there more to be done after this?

Yep. It's going to be a lengthy recovery, at least into January. Besides all the scaring around my skull base, pituitary, optic chiasm, carotid artery, I've got stints in my nostrils, not to be removed for three weeks. I've got to be careful with those. No sneezing or coughing without my mouth open. No blowing my nose, or manipulating it, or sticking anything into it. No bending, lifting, or straining.

Then at some point I'll have the radiotactic (Gamma Knife®) radiation, 2-3 sessions during which I'll have local anesthesia as they literally bolt my skull in position. For the proton radiation I just had a face mask strapping me down.

Then they'll decide if I qualify for any chemo trials.

I probably shouldn't have looked at images of nasal stents before breakfast.

I've only looked at them in the mirror. All I can see is crusted blood....

Meh, not as bad as I expected. Do I dare look for a video of stents being removed?...

Yeah, that was fine.

Apparently I can add diabetes insipidus (unrelated to diabetes mellitus) to my list of issues. All I want to do is drink ice water. No issues with sugar, my kidneys just aren't concentrating urine. It's easy to get dehydrated. In terms my beer drinking buddies will understand, my seal is always broken.

Oh bother. Lots of trips to the bog, presumably?

Oh yeah! Every couple of hours, sometmes even more frequently.

Today I'm keeping track.

I have much sympathy for you in that respect. Yeah, I'm at that age. Not getting enough sleep because of it

Not that anyone should be interested, but here are my results for yesterday.

Total volume: 6.5 liters
Total spent: 15


I don't feel like I've done quite that much today, but I'm not sure since I wasn't keeping notes. Anyway, I don't think that is that bad considering I think I probably typically drank between 2.5 - 3 liters normally. At work I have a 32 oz (0.946l) insulated mug I either drink water or decaf iced tea each day, then when I get home I probably drink one or two more at least, so I've only doubled my fluid intake. According to Dr. Google, it could be as bad as 20 liters per day.

Bloody Nora. I had to look this condition up. Presumably in your case it's because of the tumour affecting the pituitary or hypothalamus. Have you been told of any treatment or is it something you'll have to live with.