I have decided to continue reading my book. I started this blog in 2014 and so much happened that I felt compelled to stop writing for a while. The end of 2014 and most of 2015 was full of challenges and despondency, mixed with some happiness, sadness and yes…. it was alright in the morning.
It all started in the middle of November with my mom and a persistent cough. I’m sure you all know where this will lead. My mom had this cough for a while but we all assumed it was due to her blood pressure medication. The cough did not worsen but she started having shortness of breath. My mom routinely went to her family doctor every three months, followed her doctor’s advice during her routine checks. As a certified health aide she had to have blood tests every few months as well so we thought she was 100% healthy. She exercised regularly ate fish and broccoli, yes she was a health nut. While speaking to my mom one evening which was customary, she sounded out of breath. I said nothing somehow thought that she was just tired . She later spoke with my sister Janin who immediately rang and sounded the bell that mom was out of breath while they were chatting. I called her back to confirm my sister’s suspicion. I told her go visit her doctor . I further insisted that she should head to the emergency room if she could not get an appointment with her family doctor on such notice. She agreed to go after she had completed all her shopping because we were going to Saint Lucia in a few weeks. My mom always did what I told her. Sometimes I felt like the roles were reversed and I was the mom and she was the daughter.
She finally went to Kings County Hospital on Thursday afternoon after her shopping spree, the lady was a bit stubborn sometimes. I called her every hour until her phone had no power left. I called the house later that evening and there was no answer. I was worried all night as I had no telephone contact for her friends, such a shame on my part.
Eventually I received a call from the doctor from Kings County hospital. I was so relieved just to know she was ok. The doctor indicated that my mom was seen and they discovered she had fluid in her lungs so they were going to conduct further tests to find the source of the fluids. My mom spent eight days at the hospital conducting tests after tests. At first we thought this was just routine as she never really had such thorough exams and then, I began to research all the tests and all the reasons they were being done. The panic settled in as I was unclear as to the result. I had toyed with scenarios from pneumonia to the big C and prayed it was pneumonia because I thought my sweet, loving, compassionate mom could not be stricken with cancer. I spoke with her daily as she asked me not to travel until we knew what was going on. My sister who lives in DC went to be with her along with family and friends. so I also had a trip planned and she was adamant that I should not cancel the trip. I felt comfortable traveling because she had family and friends with her.
I spoke to my mom everyday while I was out of the country, she always sound bubbly and reassured me she was was okay. She was always okay. Three days before thanksgiving while I was in Thailand I called my mom to follow up on her, she had not been discharged as they were still conducting tests. The was was frightening. She had been at Kings County for six days now, they were draining the fluid out of her lungs. Her breathing was becoming easier and that was a relief for us all. The day before thanksgiving I called my mom and she told me that the news was not good. I was upset that the doctors gave her her diagnosis while she was alone. I listened to her while I was breaking down on the other end. I had to be strong for her as I know she would need me. When I hung up the phone, I fell in a corner and cried my heart out. It was the most heart wrenching news I could have imagined. My mom was diagnosed with stage 4 Lung cancer. This is a woman who never smoked one day in her life and she was diagnosed with stage 4 lung cancer. How? Why her? Why my family? She was health conscious and did all the right things. She surely did not deserve this. My mom was a beautiful person. She was scheduled to start chemotherapy on December 11 2014 and I told her I would be with her every step of the way.
I flew to NY on the morning of December 11th to be there with my mom when she started chemo. I arrived at LAGuardia about 8am and jumped in a cab and went straight to the hospital. I saw my mom for the first time in 3 months and I had to be really strong not to burst out crying in her presence. I hugged her so hard and when we let each other go, I quickly told her that I had to use the restroom. I barely made it out of the room before I I felt my world was collapsing. My mom had lost over 30 lbs in such a short space of time. She looked so frail and fragile, it just broke my heart to see her this way. This was the saddest I had ever felt. My strong beautiful selfless mother was sick and I could do nothing to help her.
I went to the bathroom cried my heart out, called my girlfriend and cried again. Then I had to put on my big girl panties and go be there for my mother. This is the time she needed me the most and I was not going to disappoint her. I went back in the room and sat next to her. Wiped the tears off her face and told her that everything would be ok. Everything would be ok. Those were the the words she would always tell us when we weren’t feeling good. I promised her I would be with her every step of the way. I cancelled my return flight to Atlanta because there was no way I was leaving NY without my mom.
I helped her to the doctor’s office when when he was ready to see her. I had my list of questions for the doctor and some I wanted to ask privately. I found it very difficult to talk, there was this lump in my throat all the time. I listened to the Dr give her an update and it was not good news. I became so angry, I was angry at her doctor, I was angry at the world, I was angry at myself, I was just very livid. I felt that I let my mom down. I should have been closer to her, spent more time with her, ask her more questions about her health. I felt I had let her down and that made me hate myself even more. I became an emotional wreck and could barely talk to anyone.
My mom and I in LA
Please spend more time with your mom, send her flowers, not just on mother’s day, and talk to her. Talk about everything and anything.
After the doctor examined her, he noticed that she was very weak and tired. She could barely walk for two minutes without help. He indicated that the fluid had built up in her lungs again and she would have to go back to emergency room. He would not start her on chemotherapy as she was not strong enough. My mom was disappointed as she was eager to start chemo as she felt that was the only thing to help her. I had my reservations about chemotherapy as she was already so fragile and weak but she was adamant.
We went to the emergency department of Kings county on December 11 about 1pm and it was such a horrible experience. What an eye opener………It was depressing It made that I was not financially able to do better for my mom. For all the years I have been working what did I have to show for it? Why didn’t I ensure that she had better insurance than Medicare? Why didn’t I do better for my mom?
My mom spent five days in the horrible emergency department of Kings county hospital. She finally got a bed after I spoke with the nurse responsible for assigning rooms. I overheard her talking to another patient, trying to get him a room after he had been in ER for just one night. I don’t know where I got the strength to speak out and demanded that my mom got a room before her supposed family member. I told her I would call every newspaper in Brooklyn to let them know how sick patients are treated in this place. I told her off in such a quiet and soft spoken manner that I think she felt sorry for me and was shocked at the same time. I had to leave the ER after visiting hours was over about 7 pm, and told my mom that if the gentleman in the space next to her gets a room before her, please call me. The emergency area was a nightmare, very noisy, meals were scarce. My mom could not sleep at all, she was getting worse in that hell hole. There were no chairs for visitors so I stood by her bed all day because I refused to leave her for too long.
When I arrived back at the apartment that night, I called my mom about 9pm. She was happy to report that she had been given a room. I was relieved. Finally she could take a nap and feel a little better.
I was back at her side the next morning as I wanted to be there early enough to see the doctors when they made their rounds. I needed to know what to expect, at every step. My mom just wanted to know when chemotherapy would start. She told me she just wanted that “cancer” thing out of her so she could live her life. My heart broke into a million little pieces because my mom believed that she would be healed. She believed in miracles and always said everything would be ok. I am a believer of miracles but after researching her diagnosis and talking to the doctors my mom would need a miracle and God’s intervention, I prayed for that miracle. I asked my friends to pray for my mom, I asked my family to pray for her. I did not realize that I knew how to pray until that moment. I had conversations with the Father every chance that I got. I just wanted my mom to be healed and not suffer from her diagnosis.
I met with my mom’s doctor privately and spoke to him. I told him just please tell me everything so I can do what’s best for my mom. He said the chemo would just extend her life and not cure her. The illness had taken a toll on her body and was very aggressive. I asked if she refuses the chemo would she be stronger as I know chemo can weaken your body. He said yes the chemo would do more damage than good at this time but it was the only option. My mom was scheduled for a pleurodesis procedure to treat the pleural effusion. I was relieved that she would get some sort of relief from the fluid build up near her lungs.
Moving to GA
I called my husband and discussed my mom’s condition with him. I told him I wanted to bring her home to GA to stay with us. I would have more support in GA and be able to take care of her. He said absolutely yes. I went back to the doctor and told him of my plans. He said that would be ok as they can give me all of her medical records. I then discussed the situation with my mom. She was all for it, very excited and could not wait. I made plans to take her to Saint Lucia as soon as she got stronger as she wanted to go back to her sweet Saint Lucia. We decided we would go by cruise as we were also planning a cruise for her 65th birthday.
Well all those plans were short lived came crashing down when I met the pulmonary doctor. He mentioned that mom was not in the condition to fly, it would be too risky, she could not fly with her condition. Once again, the tears came gushing down. I asked him what about driving? He said that was ok but it would be hard on her body. I had a little faith then but was very skeptical that I would be doing more damage to her. I decided then that we would still plan to do the drive. When she gets better we would drive to GA, hopefully in a week or two. I went back to be with my mom and just chatted. We chatted all day, laughed and cried and enjoyed each others company. She was placed on a diabetic diet and the food at the hospital was not very appealing. I decided to take my mom’s meal order every day and prepare her meals for her from home. I know she loved salmon and broccoli so that would be her first meal order.
I surprised her the next day with her salmon and vegetables. She was so relieved that she did not have to eat subway sandwiches anymore or the lousy hospital food. I told her to let me know exactly what she wanted to eat everyday and it would be delivered. I went home every evening excited about preparing my mom’s lunch. I enjoyed watching her eat and it made me smile. When I arrived in the morning she would light up the room with the brightest smile that would melt anyone with a stone heart. My mom was that type of person. She was always so happy to see me and I was so happy to be with her as we enjoyed each other’s company. The word started spreading that Maddo as she was affectionately called was hospitalized and I swear everyone in Brooklyn knew my mom. She had so many visitors and it just made me happy to see her surrounded by all the people who loved her. On a Sunday my mom’s room would have had over 15 visitors at any one time. Her friends came from as far as CT and NJ to spend time with her.
My mom was taken to the OR to prep for her pleurodesis procedure. I sat with her until they were ready to take her in. When she was done I was called to sit with her. She was groggy and sleepy so the doctor asked that I go home as she would be sleeping for a while. I took that opportunity to ask him how the procedure went. He indicated that they could not complete the procedure because my mom’s right lung was riddled with tumors. It was so hard that they couldn’t do anything. Her right lung was completely gone and half of the left lung. That was just too much for one to take. I must have passed out because when I came to the doctor was trying to make me sip some water, with a few of his colleagues near by. This news hit me harder than the cancer diagnosis. I figured it could not get any worse so I asked the Dr, what happens next. he said nothing! Nothing! There was absolutely nothing they could do for her. How can a child tell her mother that she is dying? This is not fair. This is the woman who brought me to this world and now I can do absolutely nothing to help her. This is a cruel, cruel world.
One of my mom’s very close friend Ferrah started visiting when she found out my mom was hospitalized. Ferrah would cook for her as well and we decided to do a shift system. I would bring lunch and visit early and she would bring dinner and come later in the afternoon. This was a perfect arrangement. Ferrah was my savior, she was not only there for my mom but for me. We stayed till 7pm every night and took the bus together. She invited me to stay with her as she felt I should not be alone in the apartment. I told her my brother would be arriving soon and I would be ok. I also had to spend my nights cleaning and packing my mom’s apartment as we had decided that she would not be going back there. My brother finally arrived, surprised me as always. I was mad at him for a minute not sure why though.
My husband arrived a day after my brother and I was just so happy to see him. He was my support and we spoke every day for hours. He helped me go through so many sleepless nights. We spent Christmas Day with my mom. I cooked a nice Christmas lunch fitting for the queen she was. Thanks to my friend Odile who brought me a fruit cake to add to our meal. My mom enjoyed her meal thoroughly. We wanted to make her feel normal even though she was in the hospital and she was very happy. She never stop smiling no matter how bad she felt. It took very little to make my mom happy. Her pain level was always at the six and we laughed every time she was asked about her her pain. What’s your pain level today Ms Fontenelle? Hmmm? Six. She was funny. I enjoyed taking care of her as that was all I could do now. My brother started giving her massages and that just warmed my heart. He helped her and showed her how to exercise her limbs as she had difficulty moving around. This really concerned me as my mom was not getting better. I asked the resident doctor what was happening as she walked in her on December 11 and by December 25, she can barely walk to the bathroom? His answers were always the same, her illness is very aggressive. How freaking comforting.
My mom was scheduled for surgery on the morning of December 26th for a pleurx catheter. That would help the fluid to be drained from her lungs and help her breathing a little easier. Before the procedure she had to have a blood transfusion as she was anemic and her blood level was too low. When we arrived at the hospital on December 26, she had been moved to a different floor. I did not ask why but she was being monitored more closely on the 4th floor, however I did notice she was hooked on more machines and also a heart monitor. My brother Donovan and husband were chatting with her about her night and how she spent it. She was her usual jovial self as always. I was staring at the machine and noticed her pulse rate was going up. It just started climbing and climbing. I watched my mom and the machine. I was going back and forth for a few seconds and I asked her if she was ok. She said Kel I’m fine. I said are you sure she said yes I’m fine. I was curious and just then a team of Doctors came rushing into her room. They asked us to step out for a minute and started talking to her. “Are you ok, do you feel sick, etc etc’. They spent about 15 minutes with her. As soon as they left my brother and husband returned to my mom. I followed the doctors and called the resident doctor. I asked what was this all about? I told him I noticed the monitor but she seems ok. He said my mom developed a heart condition called SVT.( Supraventricular Tachycardia (SVT, PSVT) Overview. Supraventricular tachycardia is a rapid heart rate (tachycardia, or a heart rate above 100 beats per minute) that is caused by electrical impulses that originate above the heart’s ventricles) My response was are you f…. kidding me? What caused this? As always the illness? Was that why her room was changed? Yes. Only to find out that a few hours after her blood transfusion she had the first SVT encounter. I told the the doctor that I just happened to be staring at the machine when this was happening but my mom had no reaction. What happens if this SVT thing comes on when she goes home? His answer shocked me. Your mom is not going back to her home? She will need round the clock care from a physician. I could not take any more news. I walked away and headed to the bathroom to cry out my anger. I came back to my mom’s room and she saw my face. Kel what happened? Were you crying? No mom, my allergies. Yes right in the middle of winter. I told my husband later about the diagnosis and the effects. Our plans road trip to GA, then cruise to Saint Lucia was beginning to look very bleak.
If you want to make God laugh, tell him your plans (Woody Allen). I believe this now, thanks Woody.
I went home that evening feeling so sad, broken and useless. The next morning I decided to do the laundry. I was so pissed because I realized I had to go out and find a public laundry. I’m wondering why does my mom like this hell hole so much. She loved living in NY. She loved Brooklyn. Whenever she came to visit me in GA, she was always happy to go back to her wonderful NY. While waiting for my laundry to be dried, I received a call from the hospital. Mom was scheduled for surgery to place the pleurx catheter but it could not be done because of her insurance. The after care was very expensive and they needed some form of payment assurance before they could do it. I indicated that she had Medicaid and I was told that it would cover it. The system showed she had no Medicaid. They gave me a website to go and apply to a charitable organization that would supply the bottles for the pleurx catheter. I went online but my fingers could not work. I decided to go the hospital anyway and speak with the doctor. I indicated to him that I would pay for the bottles. I just needed my mom to have the surgery so she can have a better quality of life. They had to reschedule anyway because she had missed her appointment. One day later the system was updated and yes my mom had Medicaid, thank God.
Both my husband and my brother left after Christmas and I was alone again. Not quite alone, my friend Ferrah was there with me everyday plus my mom’s other friends came to visit. We tried to keep her in good spirits. We continued watching her soap operas on the iPad catching up with all the missed episodes. She was always smiling and no matter how terrible her diagnosis. The cancer had spread all over yet my mom was in the best spirits. She was not quite sure how bad she was but she was happy and I was not going to give her any bad news. She believed that we were going to GA and then Saint Lucia and that’s how it was going to be.
I started reading more about lung cancer and the effects. I was mad at myself for reading so much but felt I needed to be a step ahead. I would go look for signs of anything I read. The first major sign was using the restroom. I would always ask my mom if wanted to use the restroom and she would say no or told me she used it before I came. I knew she said that so I would stop but I was getting concerned because I would bring her her special water every morning, plus a smoothie. I would be with her from about 8am till about 7pm, and she would not use the bathroom. She would also nod off to sleep so quickly, taking little naps in the middle of our conversations. I knew that was not good and mentioned it to Ferrah. Ferrah said she noticed as well and was a bit concerned. We left her about 7pm and I went home to come for more research. The more I read, the sadder but I could not stop researching.
My brother and sisters called everyday and most days my mom nor me would speak to anyone. She was getting more and more tired. She would put her phone off sometimes and tell me she doesn’t want to speak with anyone. I was also very tired, both physically and emotionally to relieve my days so I too shut most people out.
On Sunday January 4 my mom had a parade of visitors. This was the most friends she had seen in one day and she was so happy. Her friends laughed joked, went down memory lane and just gave her a beautiful Sunday. She was smiling from cheek to cheek. Monday morning I went to see her early as she was scheduled to have a small procedure done. They were going to finally put in the catheter so she can go home. I was ecstatic, my mom was finally leaving this place to go home and be more comfortable. This was a wonderful birthday gift as this was also my birthday. I went in pre op with her and then waited till after surgery. It was a short procedure so she was out in about 3 hours. She was not groggy at all when she went back to her room. I brought her soup nut she wanted a subway sandwich. I left her and went across the street and bought a tuna salad on whole wheat. She thoroughly enjoyed her sandwich. We spent the rest of the afternoon chatting, checking facebook and watching soap operas. This was my best birthday because I spent it all with my mom. I could not ask for anything else.
There was one downer that day though. A team from palliative care came to see my mom. They came in while I had gone out for a drink and I was livid when I returned and met them discussing palliative or hospice care with her. As soon as I walked in she asked them to talk to me as she was not in the mood. I could see she was very distraught. She had been praying for a miracle and believing that she would walk out of the hospital cancer free and now they want to discuss hospice care. In the end she said she did not need their hospice care because she was going to GA with her daughter. How much pain can one person take? God doesn’t give you more than you can handle so apparently I could still take, but why did he have so much faith in me.
Before I left I reminded my mom that I was leaving for GA the next morning and my sister Christine would be arriving tomorrow to be with her. I had also asked her girlfriend to come spend the day with her until Christine arrived as I did not want her to spend a day alone. She was ok. I explained to her that I would be back in a few days as I had to go back to work but would return. She said she was fine and understood. I was sad and did not want to leave her but it was just for a few days. I would be back the following week. She assured me that she was ok. I hugged her tight, did not want to let go, kissed her and told her I would see her next week.
That 2am Phone Call.
I always heard about that 2am phone call but until it happens to you, you have no idea. My phone rand about 2am or later. I woke up not because I had heard the phone but because I had that feeling. I looked at my phone and saw the missed call had come in about 2:10am. I redialed the number but got a recording from the hospital. I then listened to the message and redialed the number that was left. Yes it was Kings County hospital and a doctor had called. She just asked me to call her back. I called back right away and got the Dr. She wanted to know if I knew how sick my mom was? What the hell kind of question is that? I told her I knew my mom was very sick but when I left her she was fine. She said I should come right away. I jumped in the shower with my pyjamas on as I was not thinking. I called my husband and he finally picked up on the third ring. I know he understood nothing I was saying because I was just crying in the phone. He kept on saying calm down and I kept on screaming my mom is sick. I hung up to call a car service and they were on their way. I went outside to wait when I called my husband again. The car finally arrived and I was crying hysterically. When I arrived at the hospital, my phone rang again and it was the doctorr calling me. I told her I was almost in my mom’s room.
When I arrived in the room there were about six doctors around my mom bedside. She had an endotracheal tube attached to a ventilator. This was not the person I left a few hours ago. How could she have gone from smiling to being on a machine now. I could not handle seeing her this way. This was not the tower of strength I knew, my strong loving mom. The single mother who raised five children. Ensured that everyone was always fed, well groomed instilled the right principles and got an education. She struggled and worked hard for her kids. My mom was my mentor, biggest fan, biggest supporter and my queen. She was not that person attached to the machine.
The resident doctor sat with me and tried to console me. He told me that my mom was not not doing well at all. She had 3 cardiac arrest from about 10pm the night before. They had resuscitated her but wanted to find out what she wanted. They also felt that they had done some damage to her ribs while trying to bring her back every time. They needed to know if she had a DNR (Do Not Resuscitate order). At the end of the consultation, the doctor’s final advice was that my mom was really gone just being kept alive on machines so I had to make a decision now. How horrible can they be? I called my husband and told hi what was going on. I then conferenced my brother and sisters in but asked the doctors to update them of what had transpired. I could not talk anymore. My siblings were just crying on the phone or and could not understand what was going on. They asked me to make the final decision as I was the only one there with mom. I had already decideed that no matter what, I would not pull the plug on my mom. I called my best friend in Saint Lucia and she just knew that it was not good. I just wanted to hear a calm voice. While I was on the phone about 4:45am, my mom had another cardiac arrest. The doctors said that they could do nothing more after this.
I went to sit with my mom and was just praying and watching her. She looked so peaceful. Is this what I was praying for? No suffering? I sat with my mom from about 6am until about 10am when she started to move. The nurse told me she was waking up. By this time there were two of my mom’s friend and my colleague Odile who treked in the snow to come be with me. They felt I should not be aolne. My mom opened her eyes about up about 10:15 am and I was so excited. I believed that she was coming to. I called everyone and told them she had woken up and she was ok. She tried to talk to me but she could not with the treach in her throat. That right there broke me down because I so wanted to hear her voice. She tried to pull the treach from her mouth and the nurse then put mittens on her hands. The nurse indicated that my mom was awake and was aware of her surroundings. I started to talk to her and told her she would be ok. She signaled that she was hot so I used a book to fan her. My mom was freezing cold but the beads of sweat was continuous on her face. I continued to fan her until one of her friends came to help. I could not handle seeing her that way. It was devastating. She stayed up until about 11:20 am and started to doze of every few minutes. I sat with her and talked and just held her hands. I massaged her forehead, her neck to make her comfortable. I knew my mom was going because all the signs were there. The cancer had spread aggressively throughout her body, her organs had failed, she just experienced cardiac arrests and now she was being kept alive by a machine. Everything happened so quickly, literally overnight.
My mom opened her eyes a few times between 11:30 and midday. She looked around her to see who was there and went back to sleep. I kept holding and playing with her hands, as that was all I could do. One of the employees came and asked if I wanted to see a priest. My mom is a catholic and I know she would want that. I asked for the priest to come by but they could not find him. One of the cleaners told me to just pray with her, so I started praying. I prayed and cried and prayed and cried because it finally dawned on me my mom was not coming back. At exactly 12: 35 she opened her eyes for the very last time. She looked around. looked up and she was gone. My mom left this beautiful earth and went to meet her father. The nurse then came in said she had to get the ME to call the death. My mom was gone. January 6th 2015, I was lost and could not understand what had just happened.