Folasayo Dele-Ogunrinde and Her Battle Against Cancer

I got to know Folasayo Dele-Ogunrinde as a writer on the same website I met Atala and she wrote fiery articles about sexism, and gender, and relationships. You either loved her writing or you didn't. I loved the way she thought and how outspoken she was, and though she used an alias, I later got to find out her real name, and followed her career.

Folasayo was also a visual artist, performance poet, public speaker, filmmaker and actor, and one of the first Nigerians I know who used Kickstarter to raise funds for one of her projects. By then we had connected on Facebook and exchanged one or two messages. She went offline for a beat, and when she came back last year, it was with news that she had stomach cancer.


Folasayo fought that cancer, she did. With all her heart and might, she did. But her body lost the battle last Saturday. When I heard I was so saddened, but I am comforted with the knowledge that Folasayo's spirit surely lives on, in her work, her writing and in the memories of those who knew and loved her.

May her soul rest in peace. And may her family be comforted.

I wanted to share one of her journal entries, moving and touching as it is empowering.

Like many people I know, I was on the treadmill of life minding my own business, making plans, getting the most out of my life when suddenly I was stopped in my tracks and told to take on a role that not only seems surreal, but seems like I was asked to play a role in someone else’s life, that of a cancer patient.

On Nov 30th 2011, I was admitted to the hospital from the ER when I went in for severe abdominal pain after eating some rice. Prior to this, I had noticed my inability to eat a full meal – one mouthful after my brain tells me I’m full resulted in a sharp pain in the left side of my abdomen. I thought this a bit unusual since I know the stomach is supposed to expand to take in more than the brain agrees with when we insist on ignoring the gauge that says we are satiated. While I did not consciously ignore this, I thought it might be something as benign as an engorged liver since I was on an Iron rich diet at the time due to being anemic. So I went on a fast to detoxify my system and it seemed to work until I decided to break my fast on that November night.

At Memorial Hermann Hospital, I was subjected to a battery of tests and the first thought that came to the attending physician was lymphoma but this was pending a confirmatory pathology report . He said It was no big deal and I would be OK after a few rounds of Chemotherapy. The lab report came back negative - no malignancy. It was all a terrible mistake. The diagnosis came back as Chemical Gastritis. 6 days later, I was discharged on a liquid diet, was prescribed some meds and told to gradually re-introduce solid foods.

With no improvement and declining ability to eat, I was growing weaker by the day. By January, I was not even able to ingest 1 oz. of liquid at a time, not even water. This was quite terrifying but I kept hoping things would get better. I was planning shows for my new musical band for Feb 1st, going about as if all was well with me. By now I had lost a considerable amount of weight and while some looked at me and thought how lucky I was to be so svelte, only one friend saw through this and thought something was seriously wrong with this picture. To cut a log story short, she came over to my apt. on Jan 30th to check in on me, I was too weak to even get to the door to let her in, and she took one look at me and called 911. That call literarily saved my life. At the ER, they could not find a vein in me for hours to put in an IV line, and when they eventually got my lab results out, they said I was so severely dehydrated and malnourished I could easily have slipped away and died within a week!. The starvation mode may have also been why I didn’t realize how bad things were, it had affected me mentally as I was so disillusioned about my reality. This ER visit resulted in my hospitalization which lasted about 3 months. This thus began my journey into uncertain territory.

It took three months for the doctors – dozens of them, to come up with a diagnosis. Three valuable months. I was put through a battery of tests, zapped with what I consider too many X-rays, CT Scans and a PET Scan, 3 major surgeries and having to make tough decisions that could mean life or death during this “incarceration” at the hospital. All the tests came back inconclusive and definitely no malignancy. During one of my later endoscopies what was growing in my stomach was so rapid and had resulted in complete stricture of my duodenal ducts – which is where the liver and pancreas dumps its secretions. So I developed a severe case of jaundice and had to be fitted with a tube that drains my liver into an external bag I wear around my thigh. I still have to wear this bag. The other goal for the doctors was to try to keep me alive on elemental nutrition via TPN through a piccline that went from under my arms into an artery that feeds directly to my heart. The thought was scary, and there was a very high risk for life threatening infections. But at this point, this was the only choice available. I was on TPN - A $2000 diet a day – for 2 months. At my lowest I weighed 94lbs!. I am gradually regaining the weight now and I am 102lbs. Without adequate weight gain I could not have surgery. Eventually, they felt I was strong enough to have some exploratory surgery that will hopefully shed more light on this “mystery” illness. By this time I had become a “VIP” patient at the hospital, with every specialty coming to prod and probe and using this as a potential teachable moment for their students. My case was presented at conferences and meetings in the hope of finding some doctor who may have had a patient present with similar symptoms. 7 pathologists up to this point had looked at the slides from various endoscopic samples to no avail. The first exploratory surgery was for 9 hours, this also included putting in a feeding tube through the upper part of my small intestine bypassing my stomach, as both my upper GI and lower GI were no longer connected. This is how I would be feed from now and am still being fed. Hopefully after my treatment is over I would not need this – keeping my fingers crossed as this is no way to exist. The surgeon I was informed later backed out of making an incision because my stomach was too fibrous and thus too dangerous to open up since he wasn’t sure how he would close it back up. So 9 hours, no result. Other things were done during this procedure that was as a secondary result of all that was going on in my stomach affecting other parts of my internal organs.

So the next step was for the GI doctors to try to convince the surgeons to try again, which they blatantly refused. They said, we can’t touch her – too risky. So the GI doctors decided to do something called an endoscopic ultrasound to drill through the stomach and try to get a cross-sectional / column sample. This was done on my birthday!. What a way to spend my birthday. My brother Wale had flown in from Seattle to spend my birthday with me, but I was quite groggy from the anesthesia. We sill somehow managed to make it a good visit.

Pathology report came back again no malignancy, inconclusive. The doctors were now really backed against the wall. So once again, the GI doctors had to go back to meet with the 3 major surgeons to try to plead on my behalf as I was running out of options. They feel that whatever is going on is serious and urgent as it was growing so rapidly, I had no lumen in my stomach and it had become one solid mass. However, they cannot treat a situation they don’t have a diagnosis for. One of the surgeons finally agreed to do a full thickness biopsy but had a long session with me where he had to explain in full details all that could go wrong. I asked him a ton of questions about what he would do differently this time to minimize my risk. His back up plan is to plug my stomach with a G-tube if he can’t suture it back together. Fully understanding all that is involved, I signed the consent form. I was given just a few hours to make all of these important decisions. This was also just 4 days after my last surgery. I had barely recovered. Surgery went well, sample was sent to the lab while I was still under anesthesia to make sure the Pathologist has all he needed because the surgeon swore there was no way he would operate on me again. Pathologist was happy with the sample and I was stitched back up successfully with no need to plug the hole with a G-tube.

It took more than a week for the result to get back. Two solemn doctors walked into my room and I just knew the news was no good. So I told them, please level with me. “You have stomach cancer, and it is a pretty aggressive form of cancer” –this I later found out to be true: The type of cancer I was Signet Ring Cell Adeno -Carcinoma. This from of cancer I have, they say only occurs in Africans and Asians. Not at all common in the West. I was stoic, didn’t flinch, but had so many questions. Why did it take so long to come up with this diagnosis, what had all the previous test specific for cancer missed this? Why didn’t some of the doctors clue in on the symptoms I was presenting?. Why why why? But never once did I ask why me?. My oncologist later said, this had nothing to do with my lifestyle, as anyone who knows me know I ate healthy, mostly organic foods, I don’t even use a microwave at home to heat up my food!. He says it possibly could have been a virus that attacked me while I was growing up in Nigeria and possibly denatured some cells and caused a mutation - which then laid dormant for many years until something triggered them off to act “rebellious”. So no, it was no fault of mine I developed cancer, just luck of the draw – could have been anyone, so why not me? Right…perhaps it chose me because I have a fighting spirit and have a lot to live for, so for sure I’m not going anywhere till my God-given days are up…which I suspect won’t be for a very long time as I have many many projects and dreams to fulfill. This is a battle of my life for my life, and as much as one is never prepared for this type of news or circumstances, when the news hits you, you muster all you can within you to make you battle ready. My first response to the doctors who broke the news was Ok, so it is Cancer, how do we fight this? In a sense it was a relieve knowing what we are now faced with, as opposed to months of uncertainty. They were surprised I wasn’t hysterical or crying, the tears came later in privacy, but my first reaction was that of, after everything my body had been subjected to in the 3 months leading up to my diagnosis – all the pain, anxiety, unpleasant tests etc, many times, not even feeling I inhabit my own body, what could be worse. Please bring it on! Let’s just get rid of the disease.

During my first visit with the Oncologist, My brother Wale, came with me. He took one look at me sprawled on the examination table, unable to lift my head up – he said “ I can’t give you Chemo, you are too sick, you won’t survive the treatment”. Here I was, hoping that finally, the drug that could possibly save my life will be administered, and I was being told I could not have it. Just the knowledge that this monster inside of me keeps growing was very concerning, but the Doctor of course was right. So I was again admitted to the hospital for 11 days to get me well enough for my first Chemotherapy treatment.

By the second visit to my oncologist, I was an outpatient, still extremely weak and in a wheelchair, I visited with my dad – this day was the one day I got a bit depressed. The Doctor In front of my 74 year old father plainly said, with very little emotion that he thinks this disease will eventually take my life, but they will do the best to extend it. My cancer is Stage 4. He left the room shortly after that to consult with another Physician. The silence in the room was palpable, the thoughts swirling in my head and my dad’s head hung over us like a dark cloud preceding a terrible storm. I could see my dad face totally drained of blood, and the emotions on his face was too painful to watch. Finally, he broke the silence “ Folasayo, you will live, you will not die, ignore what the doctor just said”. That is my dad, always so positive even when facing the worst news. When the doctor came back in I said in a voice I did not recognize as my own “ Doctor M. what you just told me about my prognosis, while I respect your medical expertise, that is your own opinion, do your part and I’ll do mine, I will not die, you’ll see”. He said, “I just don’t want you to be too hopeful’. By the next day, I was back to my old self , somehow, I just never felt that death was in the cards for me. I am a divinely inspired Artist , and I have so many projects in the works, God and I are not finished yet.

Now that I’m seeing an oncologist, I have a clearer picture of my treatment plan. I had switched hospitals to a county hospital, for many reasons, mostly financial, but also because their Oncologists are all affiliated with one of the best cancer treatment centers in America – MD Anderson. The first phase of my treatment is 8 rounds of Chemo, evaluation, possibly surgery to remove my entire stomach, and perhaps more Chemo. It’s a long journey I’m on, if I say I’m not scared, I would be lying, but my faith sees me through the uncertainty of what life will be post my treatment – this is my main concern. I don’t know anyone without a stomach personally, but I’ve heard of people who have heard of others. I Know it will dramatically change my life, It would not be the end of the world or the worst thing that could happen to a human being - but my prayer too is for a miracle – for a cure. God works wonders, I am hopeful. Chemotherapy is tough, my own experience with it is unique to me, as is every other Chemo patient, but the first Chemo I had, my body was like “what the heck”!!. That’s all I’m going to say. I just had Chemo # 6 and the effects are a lot easier to tolerate. They give me the maximum dose you can safely give a human being every two weeks, and so far so good, I have only had to be hospitalized once for a Chemo-related event with dangerously low white blood count, and that has been addressed with an injection that costs $6000 a dose every time I get my Chemo. My body has become a very expensive commodity to maintain and keep alive…it’s surreal, but I’m truly grateful to be alive!.

People ask me, how do you deal with the pain and all? Honestly, I am tired of being sick at this point, but I have been able to revive my strength by asking God who has an infinite source of energy to infuse me with strength, and that has never failed. I also have a habit of visualizing myself laying helpless at the foot of the cross and imagine myself being infused with energy by the drops of blood from the wounds of Christ. My other ammo is to unite my pain with the suffering of Christ from the Garden of Gethsemane all the way to the cross and knowing that my Cross is light compared with

I could wallow in self pity and wish someone to wake me up from this dream, but it would serve me better acknowledging that this indeed now is my reality. Accept it, and make the most of what I term my second life. I see this in the light of the plight of Job in the Bible – My life will be abundantly richer when this is all over. This is what I believe. what He had to endure, yet He helps me to bear the burden. These visuals and affirmations in truth have been extremely helpful seeing me through.

I have had so much love, compassion and encouragement come my way from some of the most unexpected quarters, even people I have been previously estranged from. In this period, I lost my beloved dog Bibi, and my other dog is being fostered by someone I had never even considered a friend. This means a lot. I have had so many people reach out to me, I am so overwhelmed with how much I feel loved and how many people want me to stick around. My prayer is that all of this love invested in my physically, emotionally and financially will not be in vain. So I continue to ask for those who can to continue to assist in any manner they can and see fit. I have to beat this cancer, it will not take me away from my loved ones. I am confident in God’s infinite goodness and mercy. Thank you for letting me share this with you. Be blessed, and most importantly, enjoy every minute of your life and never take anything for granted, even the ability to eat, celebrate every meal and be grateful.