Pre-admission testing

There is one week to go and the race is on.  We have entered the sprint section of proceedings.

Over the last two days, I’ve had blood tests, a chest x-ray, an ECG (electrocardiogram), another MRI, another OPG (orthopantomogram), a general checkup, and my pre-admission clinic appointment.

The point of the blood tests, chest x-ray, ECG and physical checkup is to ensure I’m ready for them to slice and dice me for 10 hours or so.  Good respiratory function, good cardiac function and, they hope, no nasty surprises.

To that end, I also had a general checkup with my consultant physician, Dr L.  She will be responsible for my recovery.  In particular, she’ll be there to catch any infection early and treat it.  She listened to my heart and felt the lymph nodes under my arms and on my neck.  She’ll check on me each day, either early or late, she said.

Blaster also had a checkup, courtesy of the MRI and OPG.  They will show if she’s grown, wreaked further destruction, or been otherwise nasty.  For tumours, the MRI has the advantage over an x-ray (like the OPG) of showing good contrast between the soft tissues.  Of course, this is thanks to the contrast dye with which they inject their victim.   Not my favourite part, but I behaved myself today.  Not a single tear.  A little victory.

And, of course, no week is complete without paperwork.  At the pre-admission clinic, one of the clinical nurse consultants checked through my admission paperwork and gave us the opportunity to ask more questions.

They will probably call me on Friday afternoon, she said, to advise when I’m to be admitted this Sunday.  I’ll be on the ward that night, then in intensive care from the Monday night for about a week.  Unlike in public hospitals, I’ll have my own room in intensive care.  The walls are glass so they can keep a close eye on me, but I shouldn’t be disturbed by other patients.  The visiting rules for intensive care are family only but, she said, they should be flexible with visiting hours for Darren if he explains about Alannah.  (She won’t be visiting at least until I’ve had the tracheostomy and nasogastric tube removed and I’m up on the ward and, even then, we’re going to play it by ear.)

A few of you have asked about visiting in hospital.  As I said, the hospital’s visiting rules for intensive care are family only, but you’re very welcome to visit when I’m up on the ward.  Please remember I’ll be drooling and won’t be able to talk much, so have low expectations!  Visiting hours are 11am to 8pm.  The phone number for Macquarie University Hospital is 9812 3000.

Here are some photos of the ward rooms, courtesy of the hospital website.  There’s a small wardrobe and fridge over in the right of the photo and the ensuite is off to the left.  The computer “cockpit” is very cool: television, movies, radio, internet, telephone, as well as meal ordering and medical records.  No meal ordering for me of course.  Just slush and mush on the orders of my dietitian and speech pathologist.

 

 

I’m getting together my belongings for my little jaunt.  I’m going to load up the iPad with some podcasts and music.  I’m contemplating some audio books.  I have a pile of books to take too and some others I’ve ordered on their way.  Any genius suggestions welcome.

Is this happening?

It is all quiet here now.

There’s the soft sound of watery white noise through the monitor and Alannah coughing intermittently.  My parents have gone home.  Darren has gone to bed.  He isn’t sleeping much or well.

I have a cup of tea and my notes from our telephone call with Dr P this evening.  He listened.  He answered our questions.  He reassured us.  Perhaps it was my initial judgment that was post-haste.

He ran us through the basics to begin.  Ameloblastomas are locally aggressive, destroying much around them but not damaging further afield.  My ameloblastoma is the multi-cystic or multi-locular variety, meaning there is more than one area of erosion of the bone.  Only the unicystic variety of ameloblastoma is treated conservatively.  The other types, including mine, are treated aggressively with resection with a wide clearance.  That’s roughly a 2cm to each side of my 10cm damage zone.

The incidence of malignancy in ameloblastomas is fairly small, he said.  They like to check.  The recurrence rate for benign ameloblastomas is high.  With the aggressive resection he undertakes, however, he thinks the recurrence rate is less than 15%.  I don’t believe we touched on the recurrence rate for malignant ameloblastomas.

The MRI scan enables them to see the difference between the spongy and hard bone.  It showed the tumour had breached through the cortex into the soft tissue.  That, if I understood correctly, is the area of concern on which they will focus their attention in the second biopsy this Saturday.

They will send the biopsy samples to a pathologist for examination under a microscope.  They will look for signs of ameloblastic carcinoma or sarcoma.  They’ll look to see if there is infiltration of the lymph nodes or blood vessels, if there is potential to metastasize (spread to other parts of the body), and how the cells look.

Can the pathologist say for certain?  Will you need a second option?  Malignant ameloblastoma can be difficult to diagnose, he agreed.  The pathologist at Westmead Hospital for my original biopsy is a world leading figure.  He will ask a pathologist at Royal Prince Alfred Hospital to take a look.   The pathologists in this field all know each other and usually like to pass it around to get others’ opinions.  A group of them get together formally every Friday fortnight and may look at it together.

All in all, it’s a lengthy process.  It may take one to two weeks for the results of this second biopsy.  The results of the first biopsy took nearly two weeks.  I won’t know until right towards the end of June.

If the biopsy results do not come back as clearly benign, I’ll likely have a CT PET scan.  Cancer cells, among others, take up glucose and the radio-isotope scan will show if this is happening in my jaw.

Whether they think the tumour is benign or malignant, the treatment is aggressive: resection with a wide margin and reconstruction.  If they still think the tumour is benign but locally aggressive, they will only take our my level 1 and 2 lymph nodes.  This will allow them the access they need to get the fibula flap in through my neck to reconstruct my jaw.  If they think the tumour is cancerous, they will take out the level 3 lymph nodes as well.  These are located below the jaw in the glands.

Waiting on the biopsy results alone and leaving the CT PET scan aside, this brings us right up to school holidays.  Can he be sure that the tumour won’t cause more destruction in that time?  Even if the tumour is benign, could the joint at the top of my jaw not be compromised in that time?

In his 25 years experience in this field, he has only once or twice seen the jaw joint removed.  The tumour has probably been growing for years and he would prefer to wait to have all the information available.  If he is allocated an operating room by the hospital, he assured us, he can operate the day he is back.

That’s mid July.  A month away.

In March 2007, they found a cyst on my right ovary when it hemorrhaged.  It had grown to 10 by 15 cm when they operated to remove the cyst in June or July that year and decided to remove the ovary and appendix as well because the cyst looked pre-cancerous.   It wasn’t, but the danger of delay is on my mind.

It occurred to me that, in preparation for that surgery, I had the blood test for the cancer marker CA125.  While I didn’t have the marker, that wouldn’t exclude cancer here, he said.  (Indeed, a quick google indicates that’s only helpful for ovarian or breast cancer.)

However, he mused, did I know the ovaries were the most common location for tumours?  And did I know the second most common?  Yes, the jaw. Lucky me.

He is happy to see us all before the surgery.  He’ll show us the scans and answer any more questions.  He can also arrange for me to meet the young man on whose malignant ameloblastoma he recently operated.  Yes, I said, I’d appreciate that.

Then somehow, almost as we hung up, the kicker.  Even this biopsy coming back as benign will not exclude malignancy.  Only examination of the full tumour under a microscope can do that.

And on that bright note, we said our goodbyes.

This is not good

The CT and MRI results from Tuesday are in.

They are not good.

We have a telephone conference tonight with Dr P and they are scheduling me for a second biopsy on Saturday afternoon.

They need to find out more than the MRI can show them.  They need to exclude malignancy.

Malignancy.

The next step might be a CT PET scan to determine whether my ameloblastoma is in fact cancer.

Cancer.

Read on below if you can.  We hope Dr P can explain it tonight.

CT scan

Report: There is an expansile unilocular lesion involving the posterior left mandible and ramus. The second and third left mandibular molars are absent. There is no evidence of an unerupted tooth. The mandibular canal is displaced inferiorly and its roof is dehiscent. There is thin remodelled bone peripherally with areas of focal dehiscence through the buccal and lingual cortex and inferior border of the mandible. There is periosteal reaction seen anteroinferiorly over the buccal cortex. No osteoid matrix is present. Extraosseous extension is better demonstrated on the MRI performed today. No other bone lesions are seen.

Conclusion: There is an expansile lesion within the posterior left mandibular body and ramus, consistent with the histological diagnosis. There is extension through the cortex into the soft tissues. The periosteal reaction is atypical and may represent secondary infection. A malignant ameloblastoma should also be considered.

MRI scan

Report: There is a expansile mass involving the posterior left mandible body and ramus. The mass is largely isointense to muscle on T1 and slightly hyperintense on T2. Centrally there is an area measuring of T11T2 hyperintensity.The mass demonstrates avid enhancement, with a small central non enhancing component measuring 8mm.

There is dehiscence of the buccal conex medially and the lesion extends into the submandibular space abutting the mylohyoid muscle. There is periosteal reacti0n anteriorly over the lingual cortex and the mass extends through the cortex and perlosteum, buccal gingival sulcus and buccinator msucle. The mass surrounds the facial artery and is limited faterally by the facial muscles. There is edema and enhancement seen around the anteror border of the masseter muscle.

Posteriorly there is involvement of the mandibular ramus and the lesion abuts the anterior border of the medial pterygoid muscle. Inferiorly the inferior areolar canal is dehiscent and displaced. The tumor breaches the lower border of the mandible to project into the submandibular space.

There is normal fat within the pterygoid palatine fossa. There is no evidence of perineural tumour spread along the trigeminal nerve. There is no denervation of the muscles of mastication. There is a left retropharyngeal lymph node measuring 6mm. There are non enlarged lymph nodes in level 1B.

Conclusion: There is an enhancing mass within molar ramus region of the left hemi-mandible, corresponding to the the histologically diagnosed ameloblastoma. There is extraosseus extension into the soft tissues as described and inferior displacment and dehiscence of the inferior alveolar canal. Periosteal reaction is an atypical finding and may indicate secondary infection. Infection could account for some of the soft tissue changes laterally. A malignant ameloblastoma should also be considered.

Voicemail message

Message on my voicemail at 1.41pm today.

It is Dr P here.  Just letting you know.  I wanted to give you an up to date picture regarding your MRI of your mandible and the head which happened yesterday, oh sorry the day before.

I did speak with the radiologist and they just want me to proceed to do a further biopsy.  They have some concern regarding the features which they see on the MRI scan and we want to exclude malignancy

If you could give me a call, my number is […].

We would like to do a further biopsy for you on Saturday.  I have another major cancer operation to do in the morning and we are happy to fit you in the afternoon for another examination under anaesthetic and biopsy.

My secretary G will be calling you directly to see if we can get you organised.

Ok.  Thank you.  Bye.

Rhythm

Damage count: one day, three appointments across Sydney, three bouts of tears.  But the delight of three dainty little steps.

It can be hard to strike a balance.  I want to keep busy and keep things as normal as possible.  A normal week for Alannah and me had a soothing rhythm.  We never felt at a loose end, nor were we rushed.

Each morning we had plans: swimming on Monday, mothers group on Tuesday, music on Wednesdays, Grandad day on Thursdays and day care on Fridays.  Each afternoon we headed to a local playground or library.  Rushcutters Bay and Centennial Park were favourites, but we sought out new playgrounds each week.  Watson’s Bay and Double Bay Libraries were also regular haunts and we had just discovered Bondi Toy Library.

I miss the rhythm.  I know I have to make room in my life, but I don’t have to like it.

Sometimes now, I have nothing left to give.  Today is one of those days.  I dozed on and off until 1pm.

With our sights on a late June or early July surgery date, we had crammed yesterday full.  Why not cram in one more appointment or drive all across Sydney so as not to prolong the vagaries of limbo?

First stop 9am: Classroom observation at Montessori East, a preschool in Bondi.

Before this all started, I was looking for preschools for Ally.  She is on waiting lists for the Kindergarten Union (KU) preschools at Paddington and Rushcutters Bay. The day after they found the tumour, I was due to head over to Montessori East for a classroom observation.  That day it was as much as I could do to drag myself out of bed and haul myself off to mothers group. I rescheduled for the next available appointment, 14 June, thinking the worst should be behind me.

Yes, I could have rescheduled again.  But as I look at the abyss of the next four to five months, it’s comforting to picture the greener grass on the other side.  It will be hard going between now and Christmas.

Second stop 11am: CT scan and MRI at Macquarie Medical Imaging, located at Macquarie University Hospital in Ryde.

The CT scan was quick and painless.  The MRI was draining.  I knew about the duration, the cramped confinement, but not the injection of contrast dye.  Not my finest hour, but I pulled through.

And then in the waiting room, Alannah took her first solo steps.  First three dainty little steps.  Later six steps all in a row.  I burst into tears.  Such a precious moment that I wish did not have to take place in a hospital waiting room.

Third stop 3pm: First consultation with my plastic surgeon, Dr A.

Hallelujah, A is for amiable.

It took a little time to get started.  He knew nothing of my case.  He had no referral from Dr Post-haste and no briefing why I was there.  I had no scans as I’d had to hand those over at the imaging appointment.

A quick call to Dr Post-haste gave him enough information to get started.

He took his time with us and did not rush us, despite the bursting waiting room we saw on our departure.  He listened.  He understood our concerns.  He answered our questions.  We would see him again, he assured us.  He would answer our questions.

But with each new doctor comes changes to The Plan.  Not minor changes either.  Perhaps we will not recapture the soothing rhythm of Alannah’s first summer and autumn, but I felt on a roll.  I could handle the new tempo, the impending march towards the surgery.  Now maybe they will delay it until late July.  Is it too much to ask to put them all in one room and thrash it out?

Stay tuned.  Next installment to follow later tonight.  Bath time is over.  It’s time for books and bed for our little girl.

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.