It was as if the gun had just went off at the raceway, but two thoroughbreds had already taken the second quarter turn before we could even get off of the starting blocks. It was the race of our lives and we needed to chase down not just one quarter horse, but two. The cancer quarter horse and the out of control havoc causing fluid horse. It was a race I was afraid we would lose. For the first time in this journey, it was a race I was afraid we had fallen too far behind.
As I looked past the administrator’s face a tear rolled down my cheek. Almost simultaneously more tears flowed not abiding to my meek attempt to stay calm. I softly let the words slip past my lips, “Is it too late? Are we too late? Can the alternative treatments work fast enough? Am I going to have to make the decision I’ll have to make if we have to put Ryan in ICU? . . . It’s Ryan. I mean, seriously, . . . it’s Ryan Luelf . . . he can’t . . . die.”
It was Tuesday, January 5, 2016. The wind howled while the clouds darkened the day and the rain pelted the windows. I sat in the chair inside an office on the 6th floor of the CHIPSA hospital in Tijuana, Mexico, trying to somehow stay composed. I knew he didn’t have answers. I was searching for answers that couldn’t be given. It was one of many moments I had experienced for a week. The voice that kept me going every day was somewhere deep inside becoming quieter each day. I wanted that little voice to get louder, but instead every day I feared it was leaving me.
Was I losing hope? Or was I allowing fear to take over. Unfortunately, probably both.
I knew there was a nervousness in the hospital. I could see it in the nurses’ face. I could see it in the doctors’ eyes. I could feel it from everyone. Maybe it was my own nervousness that I was portraying unto others hence I was just seeing a reflection of me. Either way, we all knew that Ryan was at a critical point. It was day three and decisions needed to be made. The medical surgeon brought in a nutritionist doctor as the team of doctors agreed that Ryan was not eating anywhere near enough thus becoming malnourished therefore they were starting Parenteral Nutrition (TPN). The pressure from the fluid build up had not allowed Ryan to eat nor drink even though he wanted to eat and drink. Draining his right lung daily was not giving enough relief. His left lung was filling up as well and his belly was one of a nine month pregnant woman. The spleen was doubled its size, the liver very enlarged and the kidneys were inflamed. Protein, albumin, amino acids, and electrolyte imbalances were highly concerning and it was not safe to drain his left lung and abdomen too often. Glucothamine and Albumin IVs were also started. The pain was becoming unbearable and pain medications had to be administered. He had already started the “cancer killer treatments” having three other IV infusions each day. Essentially, he was on continuous IV treatments 24 hours a day.
So many times that first week in Mexico I pondered the question, “Am I going to have to make the decision I’ll have to make? What if we have to bring in the ‘hail Mary?'” On December 22nd, the oncologist back home in Oklahoma stated Ryan was still a chemotherapy candidate, but (a big ass BUT), he would be concerned about tumor lysis due to Ryan’s current condition and current lab work. The oncologist is a very matter of fact, no B.S. type of doctor which in all honesty I have appreciated. His concern, which he noted was a real concern, is Ryan living past those two first weeks of chemo. His words, “if he can make it past the first two weeks, he should be fine.” Two weeks . . . I’m just not sure I want to take that gamble. Of course, in the oncologist’s mind if Ryan foregoes chemotherapy “he is not doing anything.” And if he doesn’t “do anything,” Ryan would die within 2-3 months, possibly sooner.
Prior to arriving in Tijuana, on Wednesday, December 30th, 3:30am Ryan states, “Caroline, we need to go to the emergency room. [between coughs] I can’t breathe, I can’t lay back, I have exhausted myself.” I throw on my coat and as quickly as possible I drive Ryan to the emergency room. I whip the car around to the ER doors and wheel Ryan in. The words “troubled breathing” gains quick access to triage. I run back out the doors to park the car and by the time I walk into his triage room I quickly know things are different. Ryan is still on the wheelchair and the nurse is typing fast. Nothing seems to be happening. Before I can ask what is going on, the nurse states, “lets go!” She wheels Ryan around thru the doors to acute care and we enter the room. “You have the A team waiting on you.” There are 7 nurses/doctors/techs waiting on him. I stand back and realize the situation has escalated from the last time we came into the ER a mere 2 weeks back. They immediately start multiple IV lines, blood work, oxygen and so on. Ryan can’t lay down, he can’t even lay on incline because the coughing would escalate and he would not breathe well. The two doctors stand back and allow the nurses to do their thing. They make some statements, probably orders, and then one of the doctors slowly walks to me and says, “we are going to try and stabilize him. He needs a chest x-ray and we’ll take it from there.” The x-ray tech comes in immediately with the mobile machine and somehow Ryan sits well enough and the x-ray is taken. I sneak a peak at the screen and know the answer: his left lung is full of fluid, but at least his right lung looks decent (as I had just drained it at midnight.) Ryan is still having breathing issues, his heart rate is too fast and he cannot lay back so more orders are given. Within minutes another nurse comes in with a cart and a BIPAP mask is attached to Ryan’s face to help him breathe. His blood pressure is too low so they can only give him half a dose of morphine to get him to relax. They watch the stats as his body finally starts relaxing. The doctor comes back in and lets me know that they’ll continue to monitor his condition. A thoracentesis procedure has been ordered. For the first time, Ryan can lay back on a slight incline and a nurse stays in the room as she watches the stats and views several of the tests that are happening. Ryan is starting to calm down and drifting in and out of sleep.
I sit down on the metal chair that doesn’t even have arm rests and my body starts going into shock. Slowly I scoot the chair against the wall as my own blood pressure starts to drop and the prerequisite symptoms to fainting start escalating. The room turns yellow, my heart is racing, my palms get cold and I finally speak up, “Ma’am, I need your help. If I don’t lay down quickly I will fall onto the floor and you’ll gain a second patient.” She looks at me with an inquisitive look and asks, “How do you know you are going to faint?” With a weak voice I answered, “Because I have fainted over a dozen times in my lifetime. I know the symptoms.” I closed my eyes and in what felt like a split second she is asking me if I can get onto the bed she rolled in. I’m not sure if I passed out in those 30 seconds she ran out of the room, but somehow I slumped on top of the hospital bed and laid there while tears streamed down my face. I weakly looked at Ryan as an immense amount of thoughts and emotions flooded my mind. Reality slapped me in the face and all I could do was cry out silently to Jesus. Quickly realizing it had been 23 hours since I had slept; I knew I couldn’t win the battle of the mind exhausted and weak. It was as if 3 voices were yelling loudly as my heart, soul and mind battled it out. I finally whispered to myself, “just close your eyes and try to sleep, just take a little nap. Stop thinking, stop analyzing, stop praying, stop fighting, stop everything, just sleep.” I looked again at my husband noticing that for the first time since midnight he was breathing somewhat normally, resting in deep sleep. I drifted in and out of sleep, every time fighting all sorts of emotions, especially the thoughts of death. At one point I wondered if we would make it to Mexico in four days. Is it too late? Are we out of alternative options and are down to the one and only choice? Is chemotherapy really the only path to health? Can my husband survive it? The oncologist said he was still a candidate, but the first two weeks could kill him. Like, seriously. Will I be forced to make that decision? Thoughts like this among a hundred others made their way through those long hours from 6am to 9am. The thoughts menacing thru my mind caused an immediate physical reaction as my stomach became sick so I weakly and slowly made it to the bathroom. I ended up repeating that agonizing trek to the bathroom 5 times in less than 90 minutes. I would fall asleep for a few minutes then something would wake me: an alarm beeping, a loud door closing, a nurse coming in to check on him. At some point someone said he was being admitted into ICU once a bed was available. I just glazed over the information still trying to process everything. I didn’t know what to do. Do I make the call to all the family or do I wait to talk to the doctor again? I had sent a brief text to our family so they would know Ryan needed another thoracentesis and we would be at St. Francis for the day, but I couldn’t make myself let anyone know the extent of the situation. I wanted to protect my family from the emotional distress I was feeling. I drifted off again and at some point around 10am the admitting doctor came in. He awakened us and started discussing the situation. Ryan asked if they could take the BIPAP oxygen machine off and the doctor agreed. The doctor was actually quite kind and easy to talk to. He started off by asking why had Ryan declined chemotherapy the last couple of months and we briefly stated a few concerns. While the doctor did say Ryan could already be doing better he also agreed that chemotherapy could kill him too and that he had obviously seen the negative effects of chemo and understood Ryan’s concern. The negative effects of chemo were a real concern at this point, but what were the alternatives? To him its either chemotherapy or death, there were no other options. As kind as he could do it, he explained that Ryan presented some very alarming conditions when we arrived at the ER. All kinds of medical terms heart related, blood pressure related, oxygen saturation, etc. Words like, “we can’t put multiple catheters in his body to remove fluid. . . That only happens when a patient is cared by hospice and we are just trying to keep them comfortable. . . We requested an ICU room for you as you were very close to intubation . . . your wife would have to start making decisions on your behalf. . . Your labs are declining every time. . . Its time to make decisions . . .” Towards the end of the conversation the doctor realized Ryan was able to breathe normal with just an oxygen canal. After making the observation he stated that as long as he could keep his oxygen saturation above 95% after the thoracentesis procedure then we could discuss going home. I blinked my eyes trying to understand how the conversation started with ICU and hospital stay to maybe going home today.
Wednesday, December 30, 2015, is a day I’ll never forget. It was the first day I saw the door to death. It was a day that forced me to come to terms with the reality that Ryan’s cancer was truly advanced and could actually end in death. It was the day that fear overwhelmed my whole being causing me not just mental anguish, but physical turmoil. It was the day Ryan and I had the “tough” conversations. The conversations of what ifs and the decisions I as a spouse could be forced to make. It was the day that no one on this earth wants to experience. It was the day that everything was questioned and everything was on the table. Do we give it one more try hoping and praying somehow, someway the doctors at CHIPSA could save Ryan? Do we try the new drug? While it shows quite a bit of promise it is still in the very early phases of human trials. What if it doesn’t work? Could Ryan die in Mexico? Could he even make it to Mexico? Do we leave everyone, everything and go for it? Or do we change everything and throw the dice praying that chemotherapy won’t kill Ryan and maybe, just maybe lead towards a path of healing? And, will chemotherapy even work long term? How do we move forward with any sort of certainty?
Later that afternoon Ryan was discharged and the following morning we drove to the Oklahoma Surgical Hospital for a scheduled port installation. No matter what path we chose to take we knew a port would be utilized. Ryan and I went alone to the hospital. I thought I could do it by myself. I thought I wanted to be alone. I didn’t really tell anyone that I needed someone there as I thought it would just be a couple hours and we would be headed home. Boy was I wrong. I wheeled Ryan upstairs to the waiting room and within minutes the tech came to wheel Ryan off to pre-op leaving me all alone. Immediately the wave of thoughts overwhelmed me. I realized I couldn’t do it alone. I couldn’t fight the mental war on my own. My heart was prompted and I messaged a couple dear ladies, immediately they let me know two of them could come be with me. After about 15 minutes a hospitality worker came and led me to Ryan’s pre-op room where the nurses were prepping Ryan. After discussing several items, the surgical nurse came in to let us know Ryan’s hemoglobin levels had plummeted from 8.7 to 6.1 in 24 hours. Another punch in the gut, another agonizing moment where death looked me in the eyes. Without having to think about it I immediately asked if he could have a blood transfusion. The surgical nurse came back a few minutes later and stated the surgeon would go ahead with the port placement and would discuss a blood transfusion. They wheeled Ryan away and, along with my friend, I headed to the waiting room. My friend, Sherry, and I had great discussions and I was able to share my heart and let the tears flow. Eventually, Sherry would have to leave for a bit. I sat there alone again. Within minutes the pre-op nurse comes and sits by me. “The surgeon wants to do a blood transfusion. I need you to sign these papers.” I did not have to think about it. The consent forms were signed without questions. After she left, my eyes glazed over and I quietly just let the tears roll. Endless long, continuous tears flowed. Thankfully, within ten minutes or so another friend showed up. She was a breath of fresh air, a cancer survivor and just the perfect person to be there. I let the words be real, the fears be real, the thoughts be real. I let her into my ‘world’ and became vulnerable. She knew how to be real with me and gently guided me thru the fears. Her presence and her realness was what I needed. She had been down a similar path and I appreciated her ability to truly relate to the situation. Sometimes we just lose all strength and we just need someone there to listen without an agenda. Shannon and Sherry were my angels that day. I thank God for them. Thru them, Jesus reminded me who I was in Him.
After many hours, Ryan made it home. With the love and support of hundreds and probably thousands of people around the globe we somehow made it to Mexico on Sunday, January 3rd and the next phase of the journey started.
Please stay tuned for Part 2: Why did Ryan’s health spiral down in December?
Part 3: A glimpse into what was done in January.
Here’s a quick snip bit from my Facebook Post on 2/4/15:
On January 5th I sat in an office on the 6th floor at Chipsa Hospital wondering if it was too late. While tears freely flowed and we spoke about Ryan’s condition the hope in me seemed to be burning out and I wondered if we could stop the massive fluid issue that caused major havoc in Ryan’s body. 30 days later that question is undoubtedly answered. After 10 days of no more additional fluid build up, we are going home!