Medulloblastoma — Brain Tumor (2)
July 2020, unfortunately the tumor came back again. This time the tumor grows above the surgered one at the brain stem. The doctor said it most likely same type of tumor as before, which was a Medulloblastoma. He also explained the balance issue that i experience because the surgery to remove the tumor before was near the cerebellum that control it.
A week later I was slept over in the hospital. I was radiated by gamma again and did an intrathecal chemotherapy at the backbone. Before injected a chemotherapy fluid, i was put to sleep by an anesthesia. I was feeling very weird because of it. By that day after 4 hours resting, i sent home and the chemoteraphy did 6 times every 2 weeks.
Two weeks after the last chemotherapy, i visit to the doctor again to see condition of the tumor through the MRI result. The numbness had gone mostly, now i only felt the numbness at the left eye ball and slighly pull at my left side of forehead, but those aren’t annoy me most. The most important is the tumor had became smaller than before. He also explained the vomiting and nausea feeling i still experience was because the effect of the surgery last year (it’s like scar in the skin, sometimes its feel itchy or else).
It had 2021. I still struggle with my condition, especially at the upper parts of body (like eyes, face, mouth, etc.). I really hope to stop count days i live with this condition. Still hoping everything get normal again, and i believe it will happen in coming day, we just don’t know when it happen. “…We test you with evil and with good as trial…” ~Quran 21:35.
At the end of January 2021, i felt pain at the left side of back neck below the skull, but only at certain area. I felt more pain if it was pressed. The next week the pain spreaded to upper head until eyebrow.
23rd February 2021, everything seemed got worse. The headache became more painful, the ears (especially right side) are ringing louder, and the MRI test showed that the tumor grow again and this time spread to the spinal cord. This time couldn’t use Gamma Knife Radiotheraphy because the location of the tumor been unreachable by that machine. The doctor gave two procedure advise to control or remove the tumor, one is intrathecal chemotheraphy again, two use conventional radiotheraphy (that can lead to hair loss, fatigue, ect.), or both of them. He also explained that medulloblastoma has 4 types, very malignant to benign, and it tends to malignant in child.
At least the tumor in the brain stem had gone, that means the radiotheraphy with that dose before works well. And the new tumor in spinal cord yet to grows bigger, relativately still small, but it press on nerve that make other part of body feel so painful.
From that situation and information from the internet led me to relized that this tumor may have cancerous cell, not just a benign tumor, and hope the doctors with their tools could control it to grow and spread. To make it even worse, when i read the MRI Report from radiology doctor, it says there are 3 individual smaller tumors at the head and the bigger one in spine (in C3-C4 specifically). May be this headache caused by the tumor even though the sensasion is different from before.
I really hate this, fight againts something that i can’t see inside my body. It so dangerous and give impact on body. Only trust and depend on certain person to fight it.
Radiotherapy is done at Hasan Sadikin Hospital, Bandung for 18 times everyday (except holiday). First day they make a mold of your face for be used during radiotherapy and see the tumors. That procedure last for about 15 minutes using CT Scan machine. The radiotherapy itself only last for 5–7 minutes.
At 24th of March i experienced a spasm, unconsciousness and lost of memory, and i brought to RSHS ICU. Before unconsciousness i felt tingling sensation with uncleared reason and miscordination. I can’t remembered everything even my name! I always think that loss of memory means your life has overed. But fortunately my memory and consciousness slowly back and sent back to home although my vision, body balance, etc. still not back yet. Since that day i spent almost 24 hours at the bed.
At the next Friday the same condition almost happen. The headache worsen, my body got tingling sensation and numb, my vision got blurred and start to see fireflies, but this time people around me has experienced with that condition so they could handle the situasion more correctly.
8th of April is 11th of the radiation, my hair start to fall. Maybe in the next few days i will become completely bald. But beside my appareance, i feel better and that means the radiation works well. Thats more important.
After 18 times of radiation, it will continue with booster. The target of this radiation method is more focus on tumors area. Compare with radiotherapy before, this time not all the whole spine and all the brain area, in other word the effects not as massive as before. 9 times radiation at the brain and 5 times radiation at the neck.
Today is 16th of May, exact 2 years ago i came back home from Siloam Hospital and my life has so much changed. Exact 2 years ago was the moment how i see my life differently and has to accept my new body condition for the moment. This day so emotional for me.
“Chemotherapy is a struggle” as a doctor said to warn me. Chemotherapy was done for 5 weeks. At first i didn’t expect the pain from it, until i experienced the side effect. That was the worst pain i ever experienced. From the stomach pain, pain to swallow the food, numbness, etc.. Of course i went bald again. The doctor injected the chemotherapy fluid, and gave me several oral drugs include the morphins (narcotics, doses had to control by the doctor) to reduce the pain.
From it, i learned and conclude that there’s two kind of pain as shown the graphics below.
Figure (a) is can only remove or handled by the surgery doctors. Figure (b) explain that the particular pain will “disappear” by itself. It may worry you at first, but it will cured gradually. The different between Figure (a) and Figure (b) is a you can see the steep or sudden pain in Figure (b), while the pain in Figure (a) increase every day/week/month.
I don’t know if those graphics are accurate or not. Those are based on my experience, may not for all the tumor/cancer patient. Some tumor (like a brain tumor) even not give a sign or alert when it forms and grows. It only can see via MRI or CT Scan. That’s why control and consultation to the doctor very very important, so him/her can give an early treatment.
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(This post is editing and constanly updated)