5 days after my second AC treatment, I began to feel weaker than unusual. By the 5^th day of chemotherapy (based on the first treatment), the nausea would have started to subside.  I could skip one or two doses of the anti-emetics without feeling sick. It was not the case this time. By Saturday evening, I began to feel pain in the port area. I don’t recall lifting anything unusually heavy. It was a heavy throbbing pain that traveled to my neck.

My mind began racing again. Had the port shifted? Is it sitting on a nerve? Where was this pain coming from? I broke my rule of not checking the internet for symptoms and searched for “pain in port area”. The search result showed message boards of cancer support groups, with everyone sharing stories of port pain. Some said it was to be expected. Some said if you are big breasted it might tug on the port. Some did not experience any pain and some are still experiencing nerve pain after the port was removed. Hmm…which of these options could apply to me?  Yes, I am quite endowed but something about this pain did not feel right. My bras were quite supportive. Besides, any pain radiating to my neck and my back is no normal pain.

By Sunday morning it had gotten worse. I could not drink well,  I could barely eat. I was in pain. I had taken Zofran and I was still nauseated. Bitter kola was no longer cutting it. Granny Smith tasted sweet. That Sunday also happened to be my god-son’s dedication at the main church campus. With Dara’s help, I had made the food for the reception. That was a good distraction from the pain and nausea.  The plan was to go to my local church, leave mid-way and head to Canton to celebrate Ogo-Oluwa. My head was feeling very heavy.

As I was getting ready for church, I contemplated wearing a wig or using the turban. I wore the wig but took the turban in the car as back up. I also took Lorazepam with the hope that it would ease the anxiety that came with the pain.

I managed to lead praise and worship, jamming it like nothing was happening. An hour into church  service, I was not myself at all. The pain was getting worse, my head got heavier and I was starting to feel very uncomfortable. I motioned Dara to go get my turban in the car in exchange for the wig. I told Bankole the headache was getting worse. He came back with 2-650 mg Tylenol tablets. I thought they were each 500 mg. I did not bother to ask. I just wanted to get the headache away. My flesh had gotten in the way and no amount of confession could help me at that time. Big mistake…

Within 20 minutes of taking the Tylenol, I began to feel faint and loopy. My throat felt like it was closing up.I was dizzy and light headed.  I did not want to cause a scene in the sanctuary; I mustered enough strength to make it to the front lobby. I lay on the floor and asked Elder Kamalu, the head usher to call Mummy Kolawole and my husband. Mummy Kolawole is a nurse. I wanted her to check my pulse just to be sure I was okay. From the look on her face, she was more distraught to see me on the floor.

“Toyin….you should be home resting now…” she said

“Please have my husband call an ambulance” I responded.

This was not like the first time I got light headed. I needed to go to the hospital right away. In no short time, the ambulance came. Bankole explains what had happened, gave them a quick history of my medical history and had them do the initial observation. The first responder asks me questions, checks my temperature, pulse and oxygen level. Everything seems normal. I tell him I feel dehydrated and would love to be wheeled to South Shore Hospital.  I work there, my medical records are there, I am being treated by the cancer center there; the medical team might as well deal with the emergency situation.

It was a jolly quiet ambulance ride. No sirens, nothing. My vitals were okay so, no cause for alarm. I am just dehydrated. Hubby drove right behind. The congregation did not know I had left the building. The food made for Ogo-Oluwa’s reception was still sitting at TamBo’s Kitchen. Before the ambulance left, I asked Dara to follow Brother Tayo to the restaurant and ensure the coolers of food made it to church. She was supposed to quietly tell Ogo’s parents that I could not make it. Thank God for making a way of escape. That would have been crisis.

I got wheeled in, triaged and the saline bags were mounted for intravenous infusion. By the second bag of saline solution, I began to feel much better. I was indeed dehydrated. The port area was still hurting. When the IV nurse came in earlier to access it, it was very painful. I should not be feeling this level of pain. I requested to see the doctor who inserted the port but he was not on call. The port site felt tender. At first glance, it looked okay but it wasn’t properly healed either. I was well hydrated but I was still in pain.

Bankole was by my bedside. He looked pensive. He was scheduled to travel the next morning to Chicago. I am not sure what he was thinking but he did not look happy. Church folks came to visit, my children and Dara showed up later. After the well wishes, everyone was concerned I was not resting enough. The well wishes soon turned to the need to rest because chemo is no easy regimen. That just gave my husband ammunition to talk.

I listened well to everyone. There was no need to argue. They were concerned. What they did not understand was that I refused to feel helpless, hopeless and depressed. Keeping busy was my way of saying to cancer: “you cannot dictate my life” I was not going to sit down and mope. Anytime I sat down alone, my mind behaved like a busy airport with all sorts of negative thoughts landing and taking off. It was brutal.

I remember going to the Lord in prayer and asking for coping mechanisms. I needed to know how to keep living normally through the treatments. i committed everything to God’s hands; my nutrition plan, my family life, my children, the ministry, everything! I still wanted to live normally. I wanted to demystify cancer.

In all honesty, everything worked up until March 24 2017. I hydrated, I ate nourishing meals, I stayed on my meds, I prayed, I read the Word, I anointed myself, I spoke life to my situation, I went for my treatment, I rested when I could, I listened to my body. I knew when to slow down. This time all my coping mechanisms had failed on the hydration and nutrition side. Something was going on in my body and I could not put a finger on it.  I did know the port was acting up. I just did not know why. No matter how hard I tried to explain to everyone around me, no one listened. To them I was an unreasonable brat who wanted to see things her way. To them, I was in the ER because I did not rest. 

I got discharged from the ER Sunday the 26^th, with a diagnosis of dehydration. My blood work came back normal, nothing unusual for a cancer patient. My blood count was still normal, my neutrophils were still okay. I was just dehydrated.

“What about the port”, I asked the doctor.

Nothing could be done until Dr. F or the person covering for him saw me. I went home with a tender port site. Bankole had just enough time to pack for his flight to Chicago.

I went straight to bed to rest. Elizabeth and Brother Toks (Ogo’s parents) came to see me. I did not make it for my god-son’s dedication. They were gracious enough to check on me. The next morning, Elizabeth drove me to my post-chemotherapy appointment. I told the nurse practitioner I was in the ER the day before for dehydration. She was quite surprised given that I had done well the first cycle. She was going to suggest having me come in for fluids after every cycle. I then complained to her about the pain in the port area. All she could do was refer me to the nurse practitioner (NP) working with Dr. F.

By the time I got to the second floor, waiting for the NP, I was feeling very tired and chilly. I wanted to lie down so bad. Elizabeth was doing all she could to comfort me. Within a space of 2 hours, my body changed on me. The nurse practitioner saw me, took a picture of the port site, noticed it was pink and sent the image to Dr. F for review. I wanted the port out. It did not feel natural anymore. Dr. F was concerned of my chemo regimen and did not want to be hasty. He told the NP to keep an eye. In essence, if things got worse, I could come back. There were no ‘visible’ signs of infection as far as he was concerned from the image.

Hmmm. No visible signs of infection. How about the excruciating pain? I had reached the maximum daily dose of Tylenol by Monday morning. Ibuprofen was a no due to its side effects on my blood pressure. The NP was being careful with prescribing any further pain meds. I return home, tired, feverish, and in pain. Bankole is in Chicago. I am left in God’s hands and Dara’s.