21 Days in April

Hospital

It’s frightfully amusing to watch people checking me out — and by that, I mean the folks who know that I’ve just had major neurosurgery to remove a huge pituitary tumor. They invariably search my face for scars, for swollen bits, for black eyes.

Anything that might suggest trauma.

Yet I look just the same as I did three weeks ago. Truth to tell, I looked fine one day after surgery.

Thank God for endoscopy. Twenty years ago, this operation would have involved cutting away chunks of my forehead or temple to get to Wall-E, the pesky bugger who came for a visit in the early 1990s and never left. Today, neurosurgeons just widen and scrape each patient’s sinuses, and then cut the important holes internally. So just 60 minutes after my five-hour operation, I looked fine, apart from one seriously bloody nose and, under my hair, two nasty goose egg wounds inflicted by the vice that held my head tightly during the procedure.

Otherwise, I looked unscathed.

An Odd Week

The irony is that even though I look pretty good, I haven’t had an easy time of it. I spent four days in the neurosurgery step-down unit and, apart from one brave and seriously-ill grandmother with a shunt draining blood from her cranium, my roommates changed several times. My cronies were men, shaved bald, with Frankenstein stitches from having half their skulls cut away, yet they were shuffled off to ward beds after 18 hours, and released a few days later. The guy who looked like he was still waiting for his day in the OR had to be kept under close observation.

It was an odd week, by any measure. I had but 12 hours notice that I’d be going under the knife. Thursday morning was frantic, as I called in sick to work, sent off a few messages to friends, and then rushed out to fill the car with gas, to purchase a few prescriptions I’d need in the hospital, and to buy a new robe (at half price!) because my old one, circa 1981, was disintegrating.

I arrived at the Halifax Infirmary at 11:30, was processed over the next hour (they lost my file temporarily), and left to wait in the holding area, wearing a sexy johnny shirt and a warm blanket. I have great legs. I could tell all the nurses were checking me out.*

I spoke quietly with Kristina and with my sister when she arrived. Although I hadn’t really slept the night before, I wasn’t nervous, and my blood pressure was only slightly elevated. The truth was that I’ve been so sick over the last eight months, I just wanted to put the bloody thing behind me.

The Long, Dark Tunnel

The neurosurgery operating room is seriously impressive — it’s huge and crammed with a CT scanner and rows of electronics. When I climbed up on the table, a dozen doctors and nurses swarmed, and we chatted warmly for five minutes. Then I felt the cool drip of anesthetic… and oblivion.

After a time, I entered a long, dark tunnel, though mine was decidedly prosaic. I came back to the land of a living by walking down a dimly lit corridor lined with Smart Technology projectors and whiteboards.

I saw the face of Dr. Clarke. He told me the surgery went well. Then I saw my sisters, Lorraine and Linda, and Kristina. I knew pain, could feel where parts of me had been carved away, but the pain was bearable. I learned that my tumor was massive, much bigger than expected. Dr. Massoud, the ENT specialist who assisted on my surgery, told me that it went everywhere and, if it had grown upwards as most of these do, I wouldn’t be posting to my blog now because I would be blind or dead.

The good news is that they successfully removed all the tumor they could see, though it is expected to return. The bad news is that the tumor had completely encased my delicate pituitary gland, and the surgery proved too traumatic for my little buddy.

One Lost Little Buddy

At the moment, my pituitary has decided he needs to take some time off. He’s headed south for a little R&R at an all-inclusive resort in the Dominican Republic. Odds are about 50/50 that he will spend the rest of its his days there, and I’ll have to do with out him.

Despite his pint size, the pituitary is the lord of all glands, so this leaves me in a bit of a pickle: My body isn’t producing hormones, so I must rely on pills and injections to my body functioning. With some, missing a dose here and there is no biggie. Skipping hydrocortisone, however, would quickly prove lethal.

Interesting, then, that I miss vasopressin the most. It’s the hormone that regulates our kidneys, so mine have become marathon runners. They never stop pumping. I drink, I pee. I don’t drink, I pee. I am forever chasing my thirst, always feeling like I’ve just crossed Death Valley with a leaky water bottle.

DI Infraction

The condition is called diabetes insipidis, though it has nothing in common with the better-know diabetes mellitus. In the hospital, despite IV lines and and an attempt to drown myself by drinking a litre of water an hour, I was often too parched to sleep. As a result, I felt progressively worse every day after my surgery, and my doctors — I’m at the fulcrum of three medical specialties — told me to put my feet up and stay awhile.

They administered vasopressin to turn off my kidneys at regular intervals, but overshot the mark. Suddenly, my urine became too concentrated, and sodium poured out of my body in a torrent. I felt like a ton of bricks had fallen on me, suffered excruciating migraines that I could not control, and threw up painfully.

It was pretty fucking horrible. I had a brief, passionate love affair with Zofran. Eventually, through saline drips, salt tablets, and fluid restrictions, I remembered what it was to be human again.

I was released, eight days after surgery, feeling much the worst for wear, and mostly impressed by the care I had received. I continue to suffer the vagaries of diabetes insipidus, and the migraines have been constant and brutal since surgery, which doesn’t surprise me. Every nerve in my face feels inflamed from Wall-E’s extraction, so it’s painfully easy to fall into a two-sided migraine, the worst I suffer.

I need to heal.

But it isn’t quite my time. Bad karma, I guess. Two weeks after surgery, I had stitches and a silicon shunt removed from my sinuses, along with a plug of blood as big as my thumb. Within a day or two, I had raging infection that lit up my face like a lightening storm. My face swelled, and I aged about 15 years.

I’ve spent most of the last week at the limit of my pain threshold. Finally, today, I feel like the antibiotics might prevail. Maybe.

I have love for all god’s creatures, but not these little fuckers.

Sorry, did I just write that? That really doesn’t sound like me. Perhaps I am not quite myself. But maybe, in another week or two, I will be.

The truth is that I’m cranky because I think it’s amusing, but I remain grateful. I’m here. I have another chance. I can afford the chemicals I need to stay alive.

I have people who love me.

Yeah. I’m good.

_________

* Not really. One nurse did have a crush, but it came when I was at my worst, and I needed her help. The Lord works in mysterious ways.

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9 Responses to 21 Days in April

  1. Oh, golly.
    Richard, this is brilliant writing about a godawful situation. Thank you, and may your next weeks be MUCH better than the last ones.

  2. Richard says:

    With apologies. Photo credit to Kristina Robinson.

  3. You are brave and amazing in so many ways. Even though this isn’t a cheery post, it makes me smile a little bit because I think you are past the really bad stuff, and you’re going to be doing much better. Hang in there!

  4. Nancy Bond says:

    I’m glad to read an update, Richard, though I’m sorry the going has been so rough. Hang in there; take one day at a time. If the prayers and good wishes of those who love you will speed your recovery, you’ll be back to your NEW self in no time.

  5. Anonymous says:

    Richard, you are such a strong fighter, and this will pass. You will kick this in the ass. I’m thinking of you and your fight.

    Louann

  6. j a zobair says:

    Okay, I could have lived without the “the size of my thumb” reference.

    :)

    Really, this is all terribly unfair. After everything, you deserve to have had that tumor walk itself out of your nose as soon as they put you under, and to have the easiest of recoveries. I don’t know why things happen the way they do, but I know you’re strong and a fighter, and I know that soon this will be behind you as well.

    Maybe you should cafe press “I had brain surgery and all I got was this lousy shirt” onto a tee shirt. You know. For sympathy. So people will KNOW.

    Take good care!

  7. I found your website through the “Got DI” Facebook page… my 9-month old daughter was born with DI (and hypothyroid and adrenal insufficiency and who knows what else will develop). The vasopressin doesn’t actually shut off your kidneys. Instead, it allows the fluid you drink to be absorbed by your blood cells, thus, lowering your sodium. Once it wears off and you start peeing again your cells can’t absorb any fluid so your sodium levels rise again. Right after my sweet pea was diagnosed the nurses accidentally loaded her up on IV fluid and then gave her the vasopressin (through DDAVP) and it caused her to become hyponatremic and have seizures all night long – it was really a nightmare. Anyway, I am sorry you are dealing with all of this but it is interesting to read your thoughts on it since my daughter can’t tell me much! :)

  8. Hi Richard, I was just wondering how you were doing but I wasn’t quite expecting that. It sounds like you’ve been having a pretty horrendous time but are STILL smiling. It’s that kind of attitude which will see you through, you’ll see (and already do!)All the very best from here on in, wishing you some calm in that troublesome head of yours.

  9. rosalindevefranklin says:

    Richard, you’re so brave you’re Braveheart. I was lucky that I didn’t have a pituitary tumor as was expected from my DI symptoms. I have PTSD now so I’m not that lucky but yea…
    I understand you fully. Really I have deep understanding of suffering.
    Funny story about DI vs Diabetes Mellitus, when I was hospitalized for crazy bad headaches, the nurse came to my room to give me an injection in my IV and was called a moment later so she didn’t.

    The endocrinologist came by after that saying hmmm oops that nurse was about to give you insulin. OK then. LOL :)

    You know shit happens, right? I mean I could have died so easily so many times that it’s like whatever. I’m still around kind of by chance really.

    Lucky to be alive. Grateful to life! :)

    I wish you health and a wonderful sense of humor always.
    Laughter = best medicine.

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