Hello Thoroughly Nourished friends.
Today I’m going to get really vulnerable with you, and also explain why I haven’t been posting as much as usual in the past few months, and especially in the last few weeks. This post might be a bit of a downer for some people, but Chris and I are just seeing this event as part of our journey together. Also, this post is long, so I’m going to split it into two so I don’t overwhelm everyone.
Where to start? At the beginning of course.
For about 6 years now I have had very low iron levels and have tried pills, shots and infusions. I have been to several general practitioners who have tried hard to restore my iron only to have it drop again. I was referred to a special haematologist about three years ago and he started me on infusions about once every ten months. He still couldn’t pinpoint the source of my iron loss though. Yes, I am a vegetarian, but I am also a dietitian and I eat a wide and varied diet that should provide sufficient iron for my body. Two years ago I had a colonoscopy to test for potential coeliac disease (my grandmother is a coeliac) as I had only found out that I was intolerant and had not been tested for the actual allergy before. That test came back clean so we continued with the infusions.Last year my gastroenterologist (who happens to be my haematologist’s brother – keeping it in the family) suggested that we do an upper GI check with a pill endoscopy. Firstly, how cool that we have a camera that you can now swallow to take photos of your insides! Secondly, the giant donut you have to wear around all day is very, very, very hard to make look cool. I rocked mine during a trip to the movies. My advice: folks, stay at home if you are having this one done. That endoscopy found a small lesion in my small intestine.
So, off for an MRI I went. MRIs are amazing machines, but boy oh boy are they freaking noisy! My technician was lovely, and very gentle. He was about my age and he reminded me of Chris and he and his girlfriend had just gotten engaged too. I am a little claustrophobic so the MRI wasn’t my favourite thing, but yoga breathing totally got me through without incident!
The MRI confirmed that I did have a small lesion and it’s whereabouts so off to another specialist I went for another, more advanced colonoscopy.
After a confusion in the office where I was told I was going for an endoscopy so didn’t prep for my colonoscopy I got rebooked for a colonoscopy, and given my prep and appointment.
Let’s pause and talk about colonoscopy prep for a minute. That mixture you have to drink is the most disgusting thing I have ever tasted. Like, ewwww….way worse than even blue cheese (my most hated food).
Colonoscopy tips from Amy: make sure you stack your bathroom with interesting magazines, buy yourself some fancy ass lemonade to drink as part of your ‘clear fluids’ prep, and don’t wear pants that have complicated buttons. I told you, real talk.
I walked into my appointment, got given mad drugs to knock me out and the docs did their thing. When I woke up my first memory is being told that they couldn’t reach where they wanted to so I would have to go for a different type of scan.
I recuperated for the rest of the day and then found out that night that I needed to go for a PET scan. That’s Positron Emission Tomography to those in the know. Basically, they inject you with a sugary radioactive dye that sticks to the outside of very active tissues, like tumours. After you are injected they isolate you for 45 minutes as you are radioactive during this time. No glowing or She-Hulk transformations, sorry folks. Then you lie back on the PET scan machine and they take lots of photos of your (hopefully not) glowing insides. I found the PET scan experience very relaxing. Hello, being locked in a room with a book for 45 minutes and then taking a nap with a warm blanket on you – not too shabby if you ask me. I actually fell asleep on the PET scan table!Waiting to hear back from my specialist on Friday was one of the most anxiety-inducing times in my life. When he did call I found out that my anxiety and fear could get much worse. Not only did the lesion in my small intestine show up but so did the lymph node next to it and two spots in my liver.
So yeah, tumours.
So that’s why I’ve been a little absent from the blog the last few months. We have been shuttled from doctor to doctor, and trying to enjoy life at the same time. Chris has been my rock, my constant companion and steadiest support. My family, Chris’s family, and our wonderful friends have all reached out and offered support and love. We are so fortunate to be surrounded by love and many caring hands.
On Tuesday I went to meet another doctor who specialises in disorders of the gastrointestinal tract. He’s awesome and a ginger too, so you just know he is going to be awesome 😉 Yesterday I went off for a liver biopsy and tomorrow I’m scheduled for another MRI, and then a meeting with a medical oncologist and then probably surgery. I’ll let you know more in Part Two next week.
As for now things are looking up! My surgeon seems confident that he can remove the cancer via surgery and that will be the end of my treatment path! So for today I’m snuggled in bed with Penny recovering from my biopsy, reading fairytales, and taking naps. Chris and I are treating all of this like an adventure, so no sadness or morose quotes allowed. Chris and I decided on a mantra at the beginning of this journey. No matter what comes, we’ll figure it out. We will figure it out. Talk to you soon friends!