Suspended until further notice.

 09.2023

Here I am, waiting for the results of my recent MRI. 

For those who do not already know, I had a bone tumour that turned malignant back in 2021 due to Ollier’s disease.  

I am a lucky lady, so was treated quickly, painlessly, and effectively. 

Thankfully, I have had no major issues since – knock on wood. 

So, what is the problem then, Madame?  Why is waiting for MRI results so hard? 

Well, it is because I spend a lot of time waiting. Before the malignancy, I waited every year for that malignancy. It came, it went. 

Now it is every 6 months that I wait. 

Waiting is anxiety-inducing.  It puts me in suspension. 

The problem is that when you have a disease as rare as Ollier’s, there is no well-established protocol for how to conduct follow-ups, what to expect moving forward, what pain means, etc.  

There is no way to know what will happen at the end of the wait.

A doctor I just met suggested I read the literature. 

Hilarious (and somewhat insulting).  As if I have not already! 

The problem is that there is very little literature when you have a disease that affects 1/100 000. 

On top, symptoms present differently in everyone with the disease. Not all our tumours are in the same places, we do not all have the same severity, the same associated conditions, etc.  

There is too much variety to know anything other than some generalities.

It is challenging and so because it is challenging, we turn to each other. There is a group of us on social media. We managed to find each other due to the hard work of other patients and their loved ones, and  we share our “anecdotes”. 

Then THAT is a problem because doctors will say “This information is simply anecdotal!”. YES! Yes.It.Is. 

Please offer me a better alternative if you have one, then. 

Many of us know a lot about the condition. 

In my case:

I know this disease is caused by a mutation. 

I know that my bone quality is poor because of my tumours.

I know it can be painful. 

I know I have mechanical issues due to the deformity caused by the tumours. 

I know my vitamin D and calcium levels are almost always too low.

I know that tumours can turn malignant in other places or regrow if not fully removed.

I know there is a chance of developing soft tissue tumours, for example, in the ovaries. 

I know I should avoid X-rays because I have had too many. 

I know all these things.

Sigh…

What I do not know is how the next part of my story will go. 

And.

This effectively means I know nothing at all.

So, I sit, and I wait. 

At least I am 2 weeks into my wait. I should know what the situation is by Thursday. 

By then, I should know if I need treatment again.  I know that treatment means surgery or cryoablation because our tumours only respond to direct physical interference.  Chemo and radiation are off the table. Another thing I have been told, so I know. 

Perhaps it will be fine, and I have bought another 6 months. Or 3 months? Or 12? I do not know. 

Until then, I do not know if I should plan for work, vacations, or for surgery.  

So, I will just wait.  I will stay on hold. 

I will try to be patient. 

I will carry on with what I need to do: Laundry, cooking, cleaning, being a mom, and teaching. Thank goodness for distractions.  😊

PS. 

I am not trying to complain, I am trying to convey the instability that people with these sorts of rare diseases live with. It can be hard, but we try to carry on.