The Plan – Part 2

So that sucked. You can forget Part 1.

And to top it all off, I came out and burst into tears in the corridor. Then again in the car.

I like hand-drawn diagrams to explain the finer points. I like understanding why one option and not the other. I like thoughtful plans.

What we got was ADHD on steroids. That’s Dr P. Let’s call him Dr Post-haste.

He dashed in from surgery and whisked us briskly into his office. It all spewed forth in no particular order. It was breathless. He did not lead us calmly and reassuringly through the process. Each question was dispatched rapidly, with a few anecdotes of his or other patients thrown in for good measure.

And a mere 15 minutes later, he was off back to surgery.  Poof.  Gone as quickly and frenetically as he had appeared.

We sat in the waiting room as the receptionist began making appointments for us. And we jotted down what we remembered.

I’m probably looking at an operation in about three weeks time, the end of June or start of July, give or take. It will be far more like I had originally expected from reading the Ameloblastoma facebook forum.

There will be four of them in there: Dr Post-haste, two plastic surgeons and an anaesthetist. It will take 10 hours and that’s only because they are doing some serious multi-tasking. One lot will be opening up my neck from the outside and resecting the tumour and most of the lower left half of my face. That’s bone, nerve, soft tissue, teeth, two lymph nodes, the lot. Meanwhile, the other lot will be opening up my leg to remove my fibula (calf bone), the smaller of the two bones in my lower leg, together with enough muscle to properly attach it in place of my jaw. Then it will be one big party as they shape the fibula to a titanium plate to replicate as far as possible my face shape and connect it all up.

For those following along with the diagrams, the resection is going to look more like this.  The margin around the tumour he plans to take is more like 2cm than 1cm.  The resection will extend from the cheek bone almost to my chin.  That’s another two to three teeth.  He may well not know until the surgery is underway whether the dotted line segment will be included in the resection.
Dental x-ray showing likely resection

I’ll stay in hospital for two to three weeks.  I’ll receive physiotherapy to learn how to use my weakened leg and build up the muscle.  My jaw will be wired shut for the entirety of my stay in hospital, up to around six weeks after surgery.  In hospital, they’ll feed me through a tube up my nose into my stomach.  I was waiting for the punch line.  No joking matter apparently.  (I am expecting at least one smart one-liner in the comments for this post.  Please don’t disappoint.)

I’m not entirely sure how we make do at home but some on the facebook group recommend taking advantage of the gaping hole left by removed teeth if you get really desperate for real food. It will probably be a month or so before I have good use of my leg again, but stairs are good for you, he assured us.  Yes, even two flights of stairs up to our apartment with no lift.

If all goes to plan, I am hoping against hope that means I will be out for Alannah’s first birthday on Friday 22 July and her party on my birthday on Saturday 23rd July.  I won’t be able to dance around with her or throw her in the air.  I won’t be able to sing to her.  I may not be able to speak to her much.  Now I’m beginning to think this is unfair.  I want so much to be home for her birthday.

It’s time to focus on the little steps.  One by one.

First, Dr Post-haste needs a more detailed picture of the ameloblastoma. That means another CT scan and a 3D MRI scan. Pronto.  That’s scheduled in for this Tuesday morning, 14 June.

Second, we have to meet everyone. The two plastic surgeons will be Dr A and Dr W.  I have an appointment with Dr A this Tuesday afternoon.  I don’t yet have an an appointment with Dr W and the receptionist will call me with the details. Later on down the track, he will refer me to one of his dental colleagues to talk about tooth implants.

Now I know you’re not going to like this next paragraph, but I am not going to hide anything or fudge the truth.  Mum, sit down and take a deep breath.  In what he told us was the highly unlikely case they find malignancy in the tumour, he also wants us to have an initial appointment with someone in the radiation oncology unit.  He will already have removed two lymph nodes close to or compromised by the tumour (I did not catch which) and no further surgery will be needed, but radiation may be.

Scattergun yes, but as Darren rightly pointed out, we did get a lot of information.  I didn’t like the quickfire delivery, but I may just have to suck it up and deal with it.  I need some time to let it sink in.

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Comments

  1. Inappropriate I know, but I’ll try the line about the garden hose.

  2. Sandra Dunn says:

    One liners aren’t my thing tonight, but if you like I will have a port for you (to help calm you down), we bought it from the Benedictine Monastery in New Norcia, Western Australia…it is rather a good drop!! I decided it was time for me to enjoy one after reading your latest update. Thinking of you xoxox

  3. Holey moley!

    Does that fit the bill? ;0) Either way, that’s my reaction after reading through your blog this evening. As my mum said in her Enid Blyton fashion, “That really is jolly bad luck.” But you have clarity of mind and undeniable tenacity on your side. You are making the best of this every step of the way by giving yourself credit where it’s due and knowing when to stop and breathe.

    It’s going to be quite a ride in so many unimaginable ways but you are up to the challenge. Tess and I will be waiting for you and Ally to come and play in the sunshine. You won’t disappoint.

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