Chapter 3: Bernice

Chapter 3: Bernice !

I remember wiping my tears and calling my little brother outside the emergency room. The conversation went something like, “We were built for this, we are Samuels and we fight.” I repeated the same thing over and over again, trying to convince both of us that we would make it to the other side of this news. My insides instantly became hollow and I was terrified. I started to walk back to where my fiancé was in the emergency room and everyone started

staring at me. Was I talking really loud? Was my wig tilted? Could they tell from looking at me that today was the worst day of my 26 years on earth? The security guard called two nurses over and blocked me from entering the ER. I was told to sit down and that everything would be ok. Eventually I figured out that blood was all over my face from a slash in my hand that I got from a piece of glass outside. It was dripping everywhere. I’m sure people assumed that I was either a domestic violence victim or just plum crazy. Reality was I had just gotten the

news that the love of my life had cancer, some type of lymphoma nodular “s” something. All I could do was wander outside alone in the dead of winter in Maryland, drop to my knees, and ask God why. !

Before the news hit, I was a 26-year-old mother of one amazing son, Maximus.

James (I called him Bae) and I had been together for 11 years and we were engaged.

Life was good. I had my Master’s degree and was working on my doctorate, and Bae had

just started his locksmith business. We had finally set a wedding date. We were happy.

We were a super fun couple who traveled at the drop of a hat. In our 11 years together we went to Hawaii, Jamaica, Mexico, Puerto Rico, and all over the US. Never able to sit still, we went skiing and bungee jumping, definitely a turn-up couple. I’m not going to lie: like any normal couple, we had our share of drama. But we both knew that it was us against the world, and we were fine.

Together. we were the best people and Bae was my best friend- hands down.

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In October 2010, Bae started to lose weight aggressively for seemingly no reason.

He was always naturally thin, but this new low weight had me worried. Â To explain his new physique, I looked for a secret gym pass, and investigated possible changes in his diet, but found nothing. November came and he started to mention joint pain. Sleeping became a nightmare as he constantly complained of being hot or cold and sometimes would sweat at night (we later figured out he was having night sweats).

This went on for a little while before he finally gave in to my mom and I nagging him to go to the doctor. After an hour-long wait, which lead to an "extensive" 15 minutes evaluation, the doctor at the clinic scheduled a test for Lupus. Lupus? “Oh, Lawd,” I thought. Bae walked out of that office as if he were given 24 hours to live. He was completely devastated. He said, “Lupus?” I looked him in the face and assured him that no matter what the tests determine, I would never leave his side. He looked back at me, simply said, “I know,” and

smiled. We went through a series of five Lupus tests, and each one came back negative. That plus our expert Google searches about Lupus had us feeling good again *cue praise dance music*. !

In December 2010, Bae noticed a lump on his neck. At this point, the hot/cold and night sweats had not stopped and his weight was still lower than normal.

Something seemed off, and since he was never one for the doctor visits, I tricked him into going. A close friend, Nikkia, was

pregnant and had some recent health scares. She needed a ride to the doctor, so I asked Bea to ride with me for moral support.

At the doctor’s office, I went up to sign Nikkia in, but also sign in Bea. “Got him,” I thought. Nikkia was fine: she was just pregnant and being dramatic. Bea, on the other hand, was being seen by a number of doctors for this new-found lump. When they insisted on further testing, I knew something was very wrong. They first thought Lyme disease, and then that thought turned to the possibility of cancer.

The doctor understood the power of the “c” word and didn’t want to sound any alarms until he was absolutely certain. Bae was transported to the hospital in an ambulance; he was angry, to say the least. I wasn’t able to ride with him, so we talked on the phone the whole way. He wanted me by his side the whole time and I couldn’t imagine being anywhere else. We were young, new parents, and black, which never equaled cancer risk in our minds. That day left us both scared and confused. !

After being transferred, Bae had his first biopsy of the lump on his neck, which left him with a mean scar. The tissue had to be sent out for testing, and the results would not be ready for a few hours. I didn't sleep the whole night. We sat up and talked about everything. When he finally fell asleep, I went into the bathroom in the hospital hallway and got on my knees and said every prayer that I could think of. I wept. Crying couldn’t relieve what I was experiencing; my whole soul was involved. I wept while asking God to spare us, pleading with him that this

would be over soon, hoping that us being in the hospital was all a mistake. !

After a long and very emotional night, the doctor came back with the results. Bae was diagnosed with Stage 4 Hodgkin's Lymphoma Nodular Sclerosis, which out the gate was present on his lungs and liver. My whole body went numb. All I could think about was the wedding books in my bag and the future they represented for us. I kept my poker face on and held Bae as he broke down. Holding him tighter and tighter I kept

telling him, “We got this. You are going to be good. Don’t worry.” I wanted to believe it.

The doctor laid out Bae’s treatment plan and told us he could be in full remission after eight months of 2-week ABDV cycles. After 11 years together, eight months was nothing: soon we would be back to business as usual.

I took a deep breath and just knew that eight months’ time would go by fast. We had this. !

Decisions had to be made right away.

Chemo was the first scheduled treatment, so we had to go through the port placement

process. Bae and I wanted another baby and had been trying to conceive after recently losing a child. Before starting chemo, we wanted to go through the sperm preservation process, but the doctor said there was no time. Bae was at risk of dying if treatment didn’t start right away. Instantly, our future seemed foggy. Dying right away?

That just didn't make sense to me; he didn't look like someone who was dying. We were young and had a future planned. Death wasn’t even on our minds. Already, cancer was getting in our way. The doctor followed

up by telling us we should try again in a year, assuming his sperm count would return to normal. I have never been a fan of the word “should” and found myself totally irritated.

All I could say to the doctor was, “We all SHOULD drink 8 glasses of water a day, but how many have you had today?” His response was minimal and he stressed the seriousness of Bae’s illness and how immediate action was needed. So we moved forward with treatment and ended up never having that second chance at sperm preservation.

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Being Bae’s advocate became my top priority. As part of hearing the news, we were handed a pamphlet similar to the one in the back of airplane seats that no one reads. I thought sarcastically to myself, “This is awesome-- everything that I need to know about cancer is in this tri fold pamphlet covered with bald old people.” There was not one black person in the tutorial pamphlet, by the way. Maximus needed us, and I was determined to learn everything about cancer to save Bae’s life, and my life as well. Once

Bae’s chemotherapy started, Google became my best friend and my first search was for natural cures for cancer. A whole bunch of weed plants popped up. Bae was thrilled at the idea. I assured him that I would be locked up by lunchtime if I attempted to bring that back on an airplane. We laugh and joked about it for days after I “fixed” my Google searches. I researched natural cures and bought everything I could find, including Seaweed, Dead Sea salt, vitamin, no sugar and organic food only. We stopped using the microwave. My Dad even bought a “drink”

back from South America. How he got the drink on a plane past customs is beyond me.

Chemotherapy started to take its toll, so Bae shaved his head, and I shaved mine with him. I was all in with him. I wanted to do my part, so I read about cancer for hours each day. As a student, I knew how to research and was honestly hoping to find something new and dierent that would save my baby’s life. I had to do my part so we could beat this. !

The first six months of chemo were promising- or so we thought- so imagine my shock when the doctors told us that James’ cancer was spreading instead of getting better. I was on fire. You mean to tell me that I have been in this hospital every other week, dealing with these awful side affects, and the cancer is spreading? Bea now had a relapsed. The cancer had created a legion on his liver. My heart began to break and I shoved my anger at the doctor who assured us that we were eight months away from healthy living and insisted “Hodgkins was

the cancer to pick if you could choose a cancer�. Who says something as insensitive as suggesting that this is the cancer to pick if you had to choose one? “I am sorry-- if I was choosing I would choose be sexy for life and win the lottery, you whack job,� I fired at the doctor (among other words). I wasn't as mad at the doctor as I was at the false sense of hope that I felt that he gave us.

Regardless, I had to gather myself and get ready for round two. !

I have never been the negative type, so I was back on my push to the finish. But Bea wasn’t ‘team fight.’ This time, he was more like team ‘fuck it.’ Bea received his new plan: three rounds of ICE, which would put him into remission and give us time to do an autologous stem cell transplant-- his only chance of kicking this thing for good.

Because his cancer was not responsive to the first chemo, he was admitted to a DC hospital for his first round of ICE, a threeday chemotherapy treatment. This ICE this was no joke. His first day on his new chemo,

we were talking and his machine started to go off. The nurses ran into the room with the defibrillator; the chemo was sending his heart to into shock. They were waiting to see if his heart would stop. They stayed there for a while until everything went back to normal. I made a beeline to the nurse station and demanded to see the attending doctor. I simply said, “Every time we do what you all say, things get worse. Now his heart is stopping. Do you all have clue what you are doing?” Needless to say, I was the coined the angry black woman on that floor. I slept

so close to him that night I have no clue how he could even breathe. I had never contemplated death or losing him. I never allowed my mind to go down that pathever. But for the first time, I kinda thought we were losing and I might not get that house in St Maartens that we were going to grow old in. !

Bae was falling apart in front of me, and it seemed like no one could help him. I was by his side but I couldn’t take the cancer away. No one could.  My baby was crawling

up the stairs to get around the house. I never cried in front of him. I would always cry to myself at night when his meds would kick in and I knew he couldn't hear me. I didn't want him to think he was losing this battle. I couldn't have him think that. They had recommended the ICE treatment to put him in remission and a stem cell transplant.

He now had an aggressive form of cancer that wasn't responsive to the normal treatment. But ICE is the real deal, I thought. The ICE made him completely bald and thin, but he was in remission, so I was

Jumping for joy. Finally!! Something they told us to do worked. !

We went in to talk about the autologous stem cell transplant and meet our new team, but the only person that came to our appointment was our oncologist. Confused, I joked, “Doc! We love you to death, but where is our team? You are clearly missing a few people!” !

She said. “Bernice, let me talk to you outside.”

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James looked puzzled. I promised him I would be right back and I wouldn't flip any tables. The doctor and I stepped outside the room. She said, “Unless you get MD insurance or have 150K somewhere James can’t get the transplant in DC. It’s not considered medically necessary.” !

For a minute, I couldn’t think straight. “I am sorry… WHAT??” !

*cue angry black woman theme music*

!

“You are shitting me!” I yelled (eyes closed with the handclaps). I couldn't believe it. They are going to let him relapse because they don't think is medically necessary- despite what the doctors say. !

She said, “It’s only covered in Maryland, and you don't have much time.” !

So I scrambled to get him Maryland insurance; I jumped through a bunch of hoops. In the end, however, we got it. We

were successful. We met the new team and because of our delay, now we were up against the clock. They stressed the importance of James not smoking in order to successfully receive the transplant. I took him to a hypnotist, acupuncturist, and bought him everything I could find so that he could stop smoking for 30 days to prepare for his transplant. He promised me that he had stopped; I believed him. Three times, we went in for the pre workup for his transplant. Three times over a two month period, he tested positive for tobacco and

marijuana. After the third time we walked back to the car and I was completely silent. !

That night I realized I hadn't been a good mom in months. I was living at the hospital part time, letting the cancer beat me.

Honestly, I was scared. We got to the corner in front of the hospital. !

Suddenly, and I threw my bag on the ground, faced James, and said “Fight me�. !

He looked at me with this look; he knew that I wasn't playing. I asked him if he knew how serious this situation was. I felt taken for granted. !

“If you die, our son would take me for granted. I will forever live in ‘I wish my dad was here.’ On top of dealing with losing you, I will forever live in your shadow. Do you get that? You have cancer. That's why I am giving you a heads up: I will not hit your port. But we are going to fight.” And I swung on him so hard I scared myself. I tried to take

his head off of his shoulders. We began to tussle in the street. He was trying everything he could to calm me down. I was yelling and crying at the same time. I had enough.

Finally, the police came and broke it up. !

“Let me go,” I screamed through my tears when the police officer grabbed me.

“You ain't gon’ have to worry about cancer killing you, I am going to kill you and tell God you died.” !

I know you are probably thinking, “How could you? This man is fighting for his life.

You don't have cancer. You don’t know what he is going through.” You are right. I don't have cancer in my body, but there wasn't a day during that 26 months that I didn't have the responsibility of cancer in my life. The loneliness of being a caregiver is crippling.

You become a professional actor, hiding your fears, needs, and desires on a daily basis.

People commend you for being strong, as if you have a choice in the matter. People never say, “Wow. She is handling that

tragedy weakly.� As a caregiver you have all the symptoms with no diagnosis. You spend countless sleepless nights running to and from the hospital. You have to be a therapist, a nurse, a cook, and a housekeeper in addition to trying to maintain a normal life. It is absolutely crazy. One day, everything is fine and the next day you are playing the starring role in a life that you never planned on living. !

Cancer certainly took its toll on me. I gained 45bls in 21 months. I lost my job

because I refused to miss an appointment with him, I lost my hair in the middle because of stress, I was 27 and when most people say stupid stuff like ‘you are youngyou have your whole life ahead of you!’, I didn’t felt like I had any life ahead. I had given my whole life to this fight. I felt like I was doing my part. I just needed him to meet me halfway. I felt like I lost my best friend. See, life had always James and I against the world. We could do anything as a team. We were always a team. B&J for life.

We had Maximus and became MJB. We were on. A forever team. !

That night after the fight, we went home and talked and cried and laughed all night.

He finally got it. He never knew how I felt.

He promised me that, from that point forward, he would fight with everything inside of him and he would never leave me.

He told me how much he appreciated me.

The truth is, I always knew that he loved me.

This road just got so rough and dark for us at times we could no longer see each other.

That night, I felt like I had my ace back in effect- finally. At that moment, knew that we were going to be fine. !

The very next day, after the bar fight in the street, we got a call that the cancer was back. He looked at me and said, “Game time.” He was ready and he was going to fight. He had one round of ICE, but his body couldn't handle it. This time, things were different. He was hospitalized for 10 days.

We held hands while he slept every night during this particular visit. His white blood

cell count was struggling to rebuild, so he had to receive some blood transfusions and platelets until his levels were stable enough to go home. However, his body couldn’t handle it and his immune system was compromised. !

With a compromised immune system, things went from bad to worse in what felt like an instant. However, James was up for the challenge; he was determined to keep his promise, no matter what. They put him on an experimental chemotherapy, which

did not control his cancer, and tumors began to grow. He walked around with back pain for 2 months on the experimental treatment before he had to have spinal surgery. I had never seen him more determined. Tumors developed around his spine and ended up crushing a vertebra in his back. We were given a new treatment plan which consisted of major spinal surgery to reinforce his spine so that he wouldn't be paralyzed, followed by 4 rounds of radiation, followed by yet another new experimental chemotherapy.

This was our path to remission, which would get us to the stem cell transplant. !

During the surgery, he lost a lot of blood and died twice on the table. He received a transfusion and made it out of the surgery.

He was put on a ventilator and given a feeding tube for 3 days. The doctors were worried that James would be paralyzed and never able to walk again. !

But he bounced back, like he always did.

We listened to Cheef Keef’s “Finally Rich”

album at the highest volume the entire time he was in recovery. We made it through the surgery, and that was the hard part. I took that as a good sign. It was like we made it through the fire. I never left his side, like I promised. He spent 1 week in the ICU and 1 week in the step down unit before he was transferred to a rehab center in Maryland, where he stayed for a week. However, while at the rehabilitation facility, he contracted an infection. The sta did not change the access to his port, and he became septic. I wanted him transferred because the facility

was not equipped to take care of him, and I fought with the facility supervisor and demanded hat he be transferred three days before he got sick for the last time. !

James passed away Sunday March 3, 2013. He was going to be transferred the very next day. ! ! ! !

There are no fighters or survivors. There is no difference. What if you die? It doesn’t mean that you lost. It’s life, and it is the journey that you are surviving, not the cancer. There is no way to lose to cancer. There is no choice in cancer. ! ! !

Open letter Dear Bernice, !

I see you laying on the couch in the master bedroom watching Scandal on repeat. I know that you feel like you have lost your whole world and you didn’t deserve it. Your heart is gone and your soul feels empty. You feel like a failure. I need you to know that you did your very best and nothing is your fault, if you could have saved him, I know that you would have given your own life for him. I am very proud of the woman that you have fought to become, and baby girl, you only get better. Make sure you thank Kim for being there by your side and getting you into

all types of foolishness that ends in late night and early morning. But don't go to hard, lady; I have seen your future and it is amazing. Hug Mommy and Shawn because they are your anchors that keep your soul afloat. Thank Crystal and Matt for never leaving your side and carrying you through the dark days to come. I promise you that this test wasn't failed and you will turn tragedy into triumph. You have been blessed with the gift of knowing how truly precious this life is and you will never again take it for granted. It was all for something. You will

change the world one day by simply following your heart. !

Love, The Future You