World War Z was an awesome movie, I’ll never forget that I watched it on June 30th 2013. It wasn’t the special effects or the plot that made it so memorable for me but it was the fact that it ALMOST became the last movie I ever watched with my mom.
3 days later on July 2nd I was preparing to go on a webinar with Lester Lim, Suzanna Thersia and Jake Gray. My cell phone rang moments before I went live to an audience of hundreds. It was my mom calling, I could have let it go to voicemail and called her back after the webinar but I didn’t. I picked up the phone and told her I was busy before I even said hello. She told me she was going to lay down cause she wasn’t feeling well, and I said I’d call her back. I put the phone down slowly, and squinted, something felt wrong to me.
The webinar went great but I had my mom in the back of my mind the whole time. We ended at about 11:00PM or so and I didn’t go and check the sales numbers in Nanacast like I normally do after a webinar. Instead, I put my shoes on and grabbed the car keys. About an hour later I arrived at my moms apartment in Orlando. She was awake but she looked pale, lethargic and fatigued. My medical training kicked in and I gave her a full assessment… vitals were normal but her blood sugar was low so I went out and got her some food. I stayed with her and at about 5 AM I decided to bring her in to the hospital.
All she was complaining of at the time was a headache and fatigue. The ER doctor was just about as puzzled as I was as to the underlying cause but when her blood work came back it became clear that something pretty serious was going on. Hemoglobin, platelets, white cells, everything was WAY off. She was still awake and lethargic, my brother and I tried to keep her spirits up even when we were ordered to wear surgical masks due to the neutropenic white cell levels. When patients have a very low neutrophil count they are prone to infection even from healthy people and wearing masks is just one of the many precautions.
She was admitted and we began to look at the headaches more closely as well as ordered more extensive blood exams. An MRI revealed 2 cerebral hemmorages and the blood work was now pointing towards and aggressive form of Leukemia. Things started to get scary for me when she was moved to the NICU (Neuro Intensive Care Unit.) Ironically this is the unit that I used to work in as a P.A. when I was in medical school back at UMDNJ in New Jersey. The NICU is an all too familiar place and one where I’d never thought I’d see my mom.
By now a bone marrow biopsy had confirmed the Leukemia and the cerebral bleeding is a direct contraindication to any sort of aggressive blood therapy and chemotherapy that her leukemia urgently required. Hematology was never really a strong suit for me and when I asked the doctors to be blunt, they told me that If the leukemia remained untreated she had about 3 days to live, that right there was the moment that life smacked me in the face.
Hematology was never really a strong suit for me and when I asked the doctors to be blunt, they told me that If the leukemia remained untreated she had about 3 days to live, that right there was the moment that life smacked me in the face.
How could this be happening, I mean this is MY MOM, this isn’t a patient THIS IS MY MOM we’re talking about here. It’s pretty amazing that she can even stay awake right now but that means I’ll have to tell her whats happening. I’ve got to explain to my mother that she’s dying. Not again, God please not again. Am I going to have to bare witness to the deterioration and death of a parent yet again. Will I have to look at lab report after lab report and watch the levels drop till I’m left with no choice but to refuse any more blood transfusions?
Sometimes a little knowledge can be a painful thing. When my dad was dying I would look at his chart and ignore the obvious. I became fixated on lab values that I knew no medical modality of the day could repair. Knowing this multiplied my pain and sorrow. It was, after all, my own self deluded assumption that I could cure my dad which propelled me into medicine to begin with. A medical, collegial and graduate education which consumed nearly 10 years of my life and a career in EMS which nearly took my life were all given rise from a deep rooted and subconscious desire to cure my father of heart disease.
It was that very medical education that made my fathers condition easy for me to comprehend but so unbearably difficult to accept. It was painful for me to partake in the combined hopes and hand holding of my family members when the inevitable outcome looked so vivid to me. I forced myself to explain the minimum to the family just so that they could continue to be hopeful. In the end of my fathers life, my family deferred the decision to end things. Even my mom left it up to me to decide when it was time to let my Dad go. To this day, refusing my fathers last blood transfusion was the hardest thing I’ve ever had to do.
In early July of 2013 I was faced with the very real possibility that my mother would soon be dead. Once again the entire family was looking to me for answers and explanations. Often I felt like it wasn’t just “understanding” that they craved but rather explanations and justifications that even the most well trained and experienced physician in the world could not provide. My mind was catapulted back to my father’s last days on earth and those tough decisions I had to make in New Jersey.
So what happens when you get this kind of news? Well, we didn’t go Rocky Mountain Climbing and we didn’t ride a bull named Fu Man Choo as the song suggests. In stead, we geared up for the long haul.
So what happens when you get this kind of news? Well, we didn’t go Rocky Mountain Climbing and we didn’t ride a bull named Fu Man Choo as the song suggests. In stead, we geared up for the long haul. My mom was coherent enough to understand the options before her, I made certain of that. Chemotherapy would be aggressive, very aggressive, more so than I had ever even heard of myself. But more importantly, before chemo could even begin we would have to clear those 2 brain hemorrhages which would most likely have to be done through brain surgery.
My mom went through chemo a long time ago but this would be completely different and it was important to me that the decision be hers to make. We could put mom in hospice, I could rent a huge house on the beach for as long as it would take and I could hire a doctor and nurse to live with us till she passed away if necessary. The whole family could move in if they wanted, this is what Melinda and I discussed. It was Melinda’s idea actually since she knows how fond mommy has always been of the beach. It just made sense that dying in front of the sand with a beautiful view of the sunset across the ocean would be the way to go. My mom is nearing 80 years of age and I wanted her to leave this earth on her own terms, I wanted her to decide. The chemo route would be hard, uncomfortable and painful in a dark hospital room with beeping sounds, IV bags and only a 30% chance of success. She decided against the beachside exit. She decided to fight instead and in that moment, it also became our fight. I conjured every intention of smacking life right back.
She decided against the beachside exit. She decided to fight instead and in that moment, it also became our fight. I conjured every intention of smacking life right back.
Things happened fast and the medical care was very aggressive. Countless blood transfusions and platelets were infused in order to get her levels close enough to tolerate brain surgery. Her body would chew up every liter of blood and within hours her levels would be back where we started again. It was up and down like a see saw and chemo could not begin until we could clear the brain. We were literally in a battle with time and I knew that at any moment my mom would lose conciseness until one of two outcomes would prevail. Those days in the NICU were very heart felt, many good byes were said, many prayers were whispered and many tears were shed. I recorded lots of conversations with my mom on my iPhone in case one day I would need to let a future child meet his or her long lost grandmother.
Days were long and nights were longer. We were always tired. Melinda and I had moved into the hospital room with my mom. We would take turns driving to moms apartment to shower and change clothes. My brother stayed in the hospital most nights as well, the three of us at her bedside. Life as we knew it changed completely almost overnight. Our dogs were being cared for by our neighbors, Melinda and I didn’t share a bed for over a month. We completely stopped working for weeks. Fortunately we’ve built a business that continues making us money regardless of the hours we work. If we’d had traditional jobs we would have both been fired for sure.
I remember that there had been a problem with one of our merchant accounts and a Bank of America rep called me about the problem. He warned me that if I didn’t address it within 7 days they would have to close the account and I would lose the $40k that was in it. From my cell phone while sitting at my mothers bed side I told them to keep it. I don’t need the money so bad that I would stop being next to my mom in what could be her final days just to save a merchant account. Screw that. And guess what… they did close it and they did keep the money but thats a whole other story for a completely separate post.
Lots of people we know called and messaged us to offer comforting words. Friends and business partners like John Thornhill and Dave Nicholson were instrumental in us getting through this time. John and Dave handled projects for us and made sure that launches and promotions stayed on schedule. I did a couple of calls from the hospital conference room but other than that I communicated with everyone through text messages and emails on my phone.
We’d been sleeping in the hospital for about a week when the brain surgeon cleared my mom for chemo therapy without having to open up her skull. After several anticoagulant infusions, MRI’s and CT scans the neuro team agreed that the bleeds were non expanding and most likely benign in nature. The new hospital room was much smaller and a lot less comfortable. By this time it had also been concluded that my mother had a rare form of cancer called APL (Acute Promyelocytic Leukemia.) This type of cancer affects the blast cells and it prevents them from maturing into adult lymphocytes.
The good thing about APL is that it’s the most curable of all the leukemias. The treatment was a combination of daily Intravenous Arsenic infusion and all-trans retinoic acid capsules (ATRA). These drugs aim to kill off most of her blood cells which would then trigger her stem cells to create new healthy lymphocytes that can mature properly. The risk is that infection and secondary diseases could be fatal if contracted while her body is so weak. My moms likelihood of survival could be as high as 80% if she could make it through the 30 day induction phase of treatment.
Those first 30 days were rough on us all, the care was intensive and it was around the clock. Some sort of caregiver or practitioner would enter her room every 8-10 minutes 24 hours per day. It was exhausting on us all but my mother hung in there. We had to wear gowns and masks at all times, we were constantly disinfecting the room. We fed her, we bathed her and we helped her go to the bathroom. It was difficult on us all but we leaned on each other, physically and emotionally.
As predicted, the Arsenic brought her lab values down to near zero and then the stem cells kicked into high gear on their own. The induction went as well as could be expected and a few weeks later second bone marrow biopsy revealed that all the cancerous cells had been killed off. The new cells appeared to be maturing naturally.
After a month in the hospital my mom really wanted to go home but we were not out of the woods yet. Her lab values were still way out of wack and the treatment had now caused a slingshot affect that was causing hyper production of new blood cells. Her platelet count soared over 1.5 million and she was now in a whole new category of risk factors like thrombosis and stroke. She was on anticoagulants and intravenous antibiotics but the doctor approved a brief discharge so that she could go home for 2 weeks as long as there was a nurse with us at the house to administer the daily IV’s.
As soon as we heard that she might be coming home Melinda and I decided to redecorate her apartment and buy her all new furniture as a surprise. Right from her hospital room, Melinda ordered all the new furniture, a big flat screen TV, couches, a new bed, the works. We even hired a team to come in and clean the entire place out. We gave it a fresh coat of paint and set it up for a more medical environment to facilitate her daily care. We had to order some IV poles and other medical supplies.
We were pressed for time…
We were pressed for time and trying to get everything at the apartment done before the discharge while continuing to stay with her at the hospital was no easy task. Melinda and I began splitting shifts with my brother so that someone was always with her. This enabled me and Mel to work on getting the apartment ready for when she was allowed to come home. Of course to throw another problem into the mix, my car broke down right at the beginning of this whole ordeal so Melinda and I are now sharing her car which complicates things even more. We even rented a car a few times. Simple tasks like running to Walmart for cleaning supplies became obstacles that one of us would have to overcome while the other had the car or was in the hospital staying with mommy.
I remember one day, Melinda had the cleaning crew at the apartment and they ran out of supplies. She had no way of getting to Walmart. I hit up a couple of friends on Facebook to see if anyone in the Orlando area could help out. Brad Spencer and Christina Sebben volunteered to help. Christina drove all the way to the apartment and went to the store for Melinda. Later that week we needed some extra hands putting together the new furniture that had just arrived and Brad jumped in again this time he came over with Anthony Aires and they helped assemble some furniture. These guys were truly awesome. They showed up with beer, a radio and a tool box.
The stay at home was very short lived – during those 2 weeks the medical treatment continued at home with daily nursing visits and IV’s. We had bought her a sofa bed so that we could live with her for a while and we even set up a computer and got an internet connection at her apartment so that we could start getting some work done while we were there..
During the 2 weeks at home we had to take her to the doctor a few times. We learned that the entire treatment was going to require 4 cycles of arsenic and ATRA over the course of 8 months. Thirty days in the hospital and 30 days out this would prevent the cancer from metastasizing and it would help help avoid a relapse. The good news was that approximately 80% of patients that get this far usually survive so we were pretty excited even though we weren’t out of the woods yet.
After the 2 weeks were over she was readmitted for her first post induction cycle of chemo. She was in better spirits this time and she was now ambulatory so she didn’t need us at her bedside constantly. Things were far from “back to normal” for us but we started to catch up with work. We went to visit her daily and took turns sleeping in her apartment. She absolutely hated the hospital food. I remember that all she would eat from the hospital was peanut butter and jelly sandwiches and decaffeinated coffee so we would bring her good old fashioned Cuban food from local restaurants.
It was tough for Melinda and I to be away from the usual work environment and still be productive. At home I’ve got my recording equipment and I can quickly jump in front of the camera and create videos. I was at the hospital one day and I tried recording a video on my iPhone but the overhead speaker kept going off paging doctor Patel. I went outside and it was too windy so I had to call on another friend for help… Jason Anderson from iMotion Video has a recording studio just a couple of miles from the hospital and not only did he let me use it but he had his team edit and produce the video for me too. The iMotion Video guys are awesome.
Over the last 10 months my mother has been admitted to the hospital a total of 5 times summing in over 180 days. In between admissions there were more doctors to visit, prescriptions to fill and other medical appointments to deal with. Melinda and I have driven back and forth to Orlando so many times that we finally decided to just move back there. We were going to move mom in with us here in Palm Bay but she’d be too far from her doctors so we’re now in the process of purchasing another property in Orlando, one that actually has 2 houses on it, one for her and one for us so we can literally be “next door” to my mom at all times.
This weekend was pretty awesome. My mom was discharged from the hospital after completing her final cycle of chemo therapy and the doctors tell us that she is now finally cured of Acute Promyelocytic Leukemia. We got a cake and some balloons and even though we have a small family, we all got together to celebrate for a little while. We had a few laughs took a few photos and then we took Mom to the movies to see Amazing Spider Man 2. Which by the way was a much better movie than World War Z.
This experience has taught me a lot about life and about the people I love. I’ve been reminded of the power in the human spirit and the will to survive. I’ve realized the importance of living every second with passion because you never know when life’s gonna try to smack you in the face.
I want to thank you all for the prayers and the kind words of support that you offered us during this trying time in our lives. I want to thank Melinda for taking care of my mom as if she was her own flesh and blood. I want to thank my brother and the rest of our family for everything they’ve done and of course, I want to thank my mom for kicking cancer’s ass. BUT… most importantly I want to thank God for the blessing of allowing us a little extra time with my mom.
In addition to those mentioned in the article above I want to thank:
Dr. Carlos Alemany, Dr Tarek M. Mekhail and the entire team at the Cancer Institute of Florida and the Florida Hospital Medical Group most notably:
Jennifer Sibley, ARNP-BC
Susan Lawler, MSN, ARNP, AOCNP
The entire Florida Hospital Oncology Dept. nursing staff at 10 Tower
Dr. Ivan Bolivar and Dr. Camilo Rincon
I also want to thank:
Jerry and Barbara Webb
Bryan Zimmerman and family
Brad Spencer and Christina Sebben
Anthony Aires and Heather Lazzaro
Aldo and Selma Garcia
The Higher Level Strategies Team
David Husnian & Woei Yu Cho
The staff at Stoneridge Apartments
The staff at Paradise Pet Resort
The staff at Nurse On Call, Inc.