by Amr F.
My name is Amr. I’m from Egypt and live in Dubai, where I have worked for 2 years now. I’m fairly new to all of this, as I was just diagnosed with VHL about 6 months ago. Prior to that, I had no knowledge of VHL whatsoever.
I am a de novo case; my family has no history of the disease. I currently have lesions in my brain and spinal cord, as well as kidney cancer.
Believe it or not, it all started with a toothache. One day at work, I started getting pain in my tooth, but I ignored it. The second day the pain became so unbearable I went to the hospital.
As part of the checkup, they checked my blood pressure and the machine gave an error. The nurse tried again and again and with different devices; they all gave an error!
I assumed that the stress from work, pain in my teeth, and my nervousness at the moment all contributed to the high BP. They finally were able to measure my blood pressure to find out that it was 200/140. They transferred me to a cardiologist, confirmed the BP, and then kept me in the hospital for a couple of days for observations and investigations. During this time, an ultrasound of my kidneys was done through which they found the cysts in my kidneys. I received my first diagnosis of PKD (Polycystic Kidney Disease). It explained the cysts on the kidney and the high BP.
Further investigations and an MRI revealed abnormal complex masses in the kidneys that was surely different from a cyst. A biopsy was scheduled with the doctor. I was informed that they were suspecting a type of kidney cancer called papillary cancer that attacks both kidneys and fits the profile.
On May 2, 2017, I went to the hospital for checkups where the doctor told me how sorry he was to bring me bad news; I had bilateral clear cell renal cell carcinoma.
I was panicking and I remained in shock/denial for quite some time. Even though I needed to talk about it, I just couldn’t. A couple of close people knew what was happening, but when they asked, I just lied. I wanted to be alone. I didn’t want anyone to know, because if they knew, it would suddenly become a reality. I wanted to be normal, even if it was just a feeling.
One of the hardest things is establishing a good support system. I am quite independent and I never considered myself needing emotional support. It became apparent that it’s a key component that could easily make or break your resolve in times of need.
Anxious, stressed and afraid, I was drilling the doctors for information. After a couple of weeks, the doctor called me to tell me that he wanted to do more tests: an MRI on the brain and spine. He explained that he suspected something called “von-Hippel Lindau Syndrome”. I did whatever research I could on it, with a lot of questions and shrouded mysteries in my mind.
The MRIs came back with lesions in the brain, which somewhat confirmed his suspicion. I was the third VHL case this doctor had ever faced in his career. I panicked again, but this time knowing it is a hereditary disease, I also feared for my family. I struggled greatly in choosing whether to tell them that early, with no clarity whatsoever, or to wait until the situation unfolded a bit more. I decided to wait until I knew more.
Focusing on my situation at that moment wasn’t easy. A mountain-load of stress and things to take care of. It’s like walls suddenly came up with no warning, whatsoever. I felt confined in my own world. I knew my life was going to change, but didn’t know the extent of this change. Until then, I was stuck in this confined little space in my mind unable to move. My first reaction was surely panic. No matter how much you bang on the walls, they’re not going to go away. When you settle down and gather enough courage and energy, you try sensibly pushing against the walls and find ways to get some more room. I went out and never stayed at home. I would have excuses to do so, in the hopes of lifting my spirits and gaining back a sense of control. But the walls didn’t budge.
Frustration then kicked in. I lived two parallel lives for a while: the normal cheerful guy by day, and the mourning train wreck of a man by night. Since the truth was the latter, the idea of combining both lives didn’t seem plausible at the time. I remained silent for a while.
I consciously knew that acceptance is a healthy path to move forward. Maybe it’s too hard to hold it all at once? Maybe my brain is doing a necessary trick to be able to grasp on the gravity of the situation? Maybe it is because my conscious mind, my waking mind, doesn’t know how to handle this?
Further examinations showed that the cancer was only in the kidneys and hadn’t spread to other organs, which was somewhat good news. Moving forward with a plan of action was not easy. I was advised to either remove both kidneys or start pazopanib treatment (a form of chemo prescribed for kidney cancer). They advised this even though the cancer hadn’t metastasized (spread to other organs) and they didn’t know what would be the outcome. I felt that the doctor didn’t know anything about VHL and how to approach the situation.
A second opinion in another hospital showed promise. They considered a complex partial nephrectomy (where only tumors are to be removed accounting for 40-50% of the left kidney). With my family and close friends by my side, the surgery passed successfully. All of the tumors and cysts were removed from the left kidney, with no complications.
After the surgery, it was to be expected that my kidney functioning would be low. But 2 months after surgery, my kidney functions were not improving and my right kidney was doing all the work.
What I’ve found in the past couple of months is that acceptance is as fundamental to the process as it gets. It requires a lot of energy and power. After all I have gone through, I have faced reality and tried to accept it. I have since met with my doctor and talked about transplant options and planning for the remaining right kidney.
I’d like to think that, no matter what life throws our way, we are a match for it, even though it may overwhelm us sometimes. It’s only a choice: to face the difficulties or just run away. The faster you realize that running away doesn’t make the difficulties disappear, the quicker you start accepting your situation. When you do that, you’ll start to adapt and think of ways to deal with it. That’s when your life resumes.
Three months after my surgery, I’m cycling, working out, hiking, and starting to do intense workouts. To experience pain and loss and still be capable of kindness and selfless giving, is a true mark of strength.
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