Once upon a time the word ‘tumour’ scared me. I remember when we were first trying to figure out the cause of Len’s pain I wondered to myself whether you could see a tumour on an X-ray. Turns out you can’t or we would have found out much sooner about Len’s NF1.
It’s a little different now. We know the tumours are there. We’ve seen them on the stark MRI images. Len can feel the ones along his spine when the cold penetrates and causes mild pain flare-ups. The surface fibromas are visible and palpable. Our limited knowledge about them makes us feel moderately better about their existence.
We know the future holds more tumours. There’s a 100% chance of Len growing more fibromas (benign tumours) and a 3% chance of MPNST (malignant peripheral nerve sheath tumours). 3%. That’s a pretty small number; smaller than the 10% chance of something going horribly wrong in surgery that we were giving in 2007. Really, it’s tiny. Insignifcant, almost.
Almost, but not quite. We know it’s there. The doctors know it’s there. That 3% is the reason Len has yearly MRIs; not to tell us if there are new tumours (although that’s useful too) but to check for rapid and significant changes which would indicate malignancy.
A week Thursday we have MRI #2, which will take a close look at the shoulder area. There’s always the hope that maybe one fibroma is causing most of the trouble and can be removed; given the slow rate of growth of these fibromas, however, that possibility is probably years down the road.
And so the 3% hums quietly in the background; most days we can hardly hear or notice it. As we head into the wait for an MRI, however, it grows louder. Never loud enough for us to forget Who our hope and trust is in but enough to remind us of our dependency on Him.
Why am I telling you all this? Because it’s real for us, and while NF1 might seem like ‘not a big deal’ sometimes apart from Len’s pain (which I’m not trying to downplay in anyway) there are parts of it that are uncertain at times. And a little scary, at least once or twice a year. And I guess if I’m helping to educate about NF1, this should be part of the conversation too.
So there it is.
The end.
Sweetie, I know about those "small chances" all too well. With hubby's (I keep his name quiet at his request...) colitis, he has bi-annual colonoscopies. They aren't checking to see if there are fibroids or polyps, because they know they are there. They are taking samples to see if they are malignant, and also looking to see how far the colitis has spread so far.
ReplyDeleteEven though the procedure has become "routine" after all the years we have known each other, each one puts that little bit of fear and nervousness into me and forces me to cling even tighter to our Father who is in complete control.
Lifting you and Len in prayer, my dear friend. Love you.
Thank you for sharing this, Thelma. Now that I know two people who are affected by this disease, it's good to know the daily experiences. I could read all the websites, but honestly that's overwhelming to me and doesn't put a personal face on it. I'd rather read these little snippits of your life. I'm glad you feel comfortable enough to write about them.
ReplyDeleteI will be praying for you two. I constantly am being told that NF1 is often mild and given statistics of all the things that could happen...see there's only a ?% chance that will even happen...but as you described it so well...that chance is always in my head, and when we come upon appointments it sort of screams its reminders at me. So I think I truly understand the fear that goes with the small statistic of 3%.
ReplyDeleteMRI check ups do create tension - what ifs in the back of the mind, even though we know who is in control of our lives. I will pray for you both that God's peace may reign. I also have regular MRIs to check if a tumor (acoustic neuroma) is growing back....a benign tumor, they say, but chances are that it could grow again. I know the emotional pain. Hugs.
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