On a Friday afternoon, February 3rd, I received a shocking phone call from my doctor. He informed me that my biopsy results had come back positive for cancer and suggested that I call the nurse on a particular number to arrange a visit with a surgeon.
Miserable Leila took over all my feeling. I was in a state of shock and confusion, desperately seeking more information and trying to set up an appointment with the surgeon as soon as possible. Always when Miserable Leila in charged, she turns on my other personality that is Leila Solver.
Leila Solver started to do something, despite repeated attempts, no one answered the phone number provided by the doctor. We went hospital to find someone have more information.
However, a nurse at the hospital who saw the stress in my eyes offered his assistance (being stressed and crying and at the same time seeking for help and solution is a cooperating of Miserable Leila and Leila Solver). With the help of the lovely nurse, we were able to schedule appointments with the surgeon for the following Wednesday, along with all the necessary MRI and CT scan.
In this journey all nurses come as Guardians.
It was Friday afternoon, I don’t know I did it right or wrong I immediately informed my close friends of the news, and they were all shocked and saddened. They shocked and cried, which I felt guilty now. I don’t want to make them sad. But that the final opinion of Leila Solver and Loda, they think, my friends get sad anyways, it is good idea to involved them as much as they know, it easier for them, I can ask them for help, this helps them to be part of my journey and we definitely have some moment of fun and laugh.
Anyways, Lventurous still have idea lets don’t miss any joy you can have, Of course Loda think Lventurous is right as help me to be prepared mentally and for next 6 months I don’t think I miss anything. I decided to proceed with my planned camping trip for the long weekend. I packed my bags and headed out, determined to enjoy every moment, and not let worries about the future ruin my present happiness, of course Thanks to Loda and Leila Solver and Lventurous to not allowed Miserable Leila took over all feelings, despite she needed sometimes. We set up the tent, it was a big one. The campground was beside the beach!! And all two nights I can hear waves!! I never did the surfing before; I was so much fun!! Lventurous was so happy!! I forgot most of time I have cancer!! I live the life like no issue exists.
Life is swimming in the pool of the present.
One must take off the dress.
Water is a step away.
Of course, Miserable Leila reminded me that it is ok to be sad and cry. Crying helps me to sympathy with Miserable Leila and helps her to calm. I know no one appreciate their miserable side, or we don’t like it, we learned our adventures, solver, happiness side are much important that other personality, but our Miserable side are they and it matter to pay attention to them, it is no bad to go deep down and cry. There is a moment that Miserable Leila and Loda works to gather to create a meaning for my life, alongside all sadness and crying and going down to the darkness, I can find the meaning of life something that I could not find in the brightness and happiness. I like my Miserable Leila. I found, it is possible to have cancer and still enjoy the moment, who knows what happen, it is a mind game, we learn we need to be sorrow and sad if ourselves or someone around us get a un curable or terrifying sickness. I realized that I was much stronger than I had thought.
Try to keep calm!
As I close to surgeon appointment, Leila Solver realize that I need to take serious action now, even though I am unsure of how much of my tongue will be affected. Loda was the lead of my feeling, searching blog posts, looking for other surgeons in other countries, what will happen for speech and other side effects. She was busy with searching all internet.
However, after returning from my camping trip, I had a meeting with the surgeon, which was a difficult day I can say. He measured the ulcer on my tongue and explained the situation, but he needed to see the results of my MRI and CT scan before moving forward. It was a bit shocking when I found out that I might have to undergo a procedure where one-third of my tongue would be removed and a free flap from my wrist would be used. But it seemed like it was going to happen. All of Loda research epic on my mind, when the surgeon talked. I was so optimistic there is no need for partial glossectomy tongue reconstruction. But he mentioned it may need.
On the same day, I had my first-ever MRI and CT scan. I had heard that 40 is the age of change, but I never imagined it would be like this (I turned 40 in September). The CT scan went fine, although I’m always afraid of injections. There was a combat between Lventurous and Miserable Leila. It was hard time for me, I just visit doctor in morning, he explained I need free flap surgery and now I am going to the first step of treatment, I cannot deny Miserable Leila, she was scared, after injection of CT scan and getting ready I started to cry, !! The process was not harmful but I mentally scared. The Guardian, CT scan technician, was kind enough to hold my hand, and calm me down. Yes, typical question come to mind, why me!! I have the answer for it from Loda, It is part of life!! Life is not supposed be always what we expected, darkness is part of life. That moment I tried to be strong and distract myself, I need help of Lventurous . Lventurous reminded me you never been in CT scan!! Lots of interesting and complicated machine that in a normal situation you could not experience it!! You already experience be in a business class, be in Heli, lots of rides in Universal studio and Orlando, but this is different!! There is a poem from a famous poet in Farsi as
I don’t know why they call
Horse, a noble being?
Pigeon, a pretty bird?
And why no vulture is
In anyone’s birdcage?
Why a clover
Is inferior to a red tulip flower?
Eyes must be rinsed.
Something else must be seen.
It was amazing machine; I can say MRI is so much boring compared to CT scan!! As it took long time, I wish they use a better music. I was feeling accomplished to do to surgeon visit, CT and MRI in one day.
Miserable Leila was worried about the choosing the right practise as small country and also tongue cancer is not one of top cancer in world, I was worried not that mush practise done in New Zealand, so Leila Solver, start to think of other options and talk to other doctors from family and friends. I search all database to get some information about the number of tongue cancer happen in NZ, which I could not find a reliable information.
I still continued to work and doing fun thing as much as I can, from paddling, stay time with friends travel from overseas, visiting Hobbiton and to eat out, despite painful tongue.
CT scan and MRI result come out and I got my appointment with Surgeon again!!! Now everything is much clear!! For sure, they need to remove the one third of tongue, including a margin to be safe side, also one my neck lymph node needs to be removed, No signs of cancer on my chest or neck!! Which was a good sign!! I have lots of stress about surgery, who does not, it a big surgery!!
Miserable Leila knows speech can be so tricky, mostly for me as social person. Losing weight fast, jaw problems and all problems I read from social media and people who go under this surgery. Other side Loda, already started to contact people with similar problem to check how they talk and eat. All were so good; I can hear them via phone very clearly. At this stage, I have two weeks to surgery and a good conversation with surgeons, I decided to stay here in New Zealand as I trust my surgeons and I have lots of supports here compare to Australia or USA.
The surgery date was set for 27th Feb. Damn on 6th march to 11th I and Reza run a global conference, Power BI summit, an online conference with over 5000 attendees and 130 speakers, it is a big project!! We need help!!! I started to work on it as much as I can!! Poor Reza, how he can manage it with my surgery!!
We have lovely friends in our Power BI community, and we have lovely colleagues!!! All lined up to help us!! That makes me feel better now!!
I started to talk to my friends, that I will face a new journey!! They are all sad by determined to help me, how lucky I was!!!I created a new group chat in Telegram and update them, I could not go alone in this Journey, I need their help!! I believe there is no harm to ask help when you needed, I will be beside them whenever they have any problem in life.
As much as they close to me to help them to be less sad and anxious, we laugh and talk, it helps to pass all moments.
From all reading I found I will lose weight a lot, so I took advantage to go to restaurant each night!! All different cousin, I could not eat hot or so hard food as my ulcer was painful, but I tried pizza , lasagne, and many things!!!
Also, I went to all my favourite farmers markets and day trips!!! Who knows I can eat bread and cheese again in next 6 months!! I drink a bit more with friends, it was hard with ulcer on tongue to drink but I try to feel more relax and satisfy, so in next six month (maybe more) I don’t miss anything. I start to share what my surgeon teams told to me about surgery to friends.
I know the first step is surgery, they going to cut the one third of my tongue, hopefully not the top of the tongue as it most responsible for speaking. The process is to replace it with a free flap from my wrist, left hand, they going to cut muscles and blood veins. It will take a while to heal, also they going to get a graft from my leg skin to cover the wrist.
I need to stay in hospital for 12 days and I probably not able to speak for a while, and also eating can be hard. I also need a feeding tube for a while. I read that some people get depressed as they could not eat normal or talk normal. Also, I know there would be lymphedema that cause some swelling in neck.
I was not worry about the scare on neck or hand, this is the natural tattoo I will have talking about my fight with cancer like a chevalier.
I talked about all with friends and Reza.