Believing the lie: Part 2

If you did not read the first part of this post, you can find it here. 

I want to use this post to not just share my pain and struggles, but to also give you a glimpse into my Dad’s battle with cancer. His courage and bravery will always inspire me.

After my Mom passed away in 2013, my Dad and I became best buds. He would text me every day and we would have a phone call several times a week. Our texts became something I looked forward to every morning. The best part is when he discovered memes. He was so funny!

In the summer of 2016, my Dad began having gastro issues. And in November, he was diagnosed with Cholangiocarcinoma, aka bile duct cancer. The same cancer my Mom had. I was devastated. But my Dad was determined to fight so I was hopeful. And I was determined to do everything I could to care for him well.

From December until March 2017, my Dad had chemo and radiation. The oncologist's hope was that the tumors would shrink to the point that they could remove a large portion of his liver. His scan in March would determine their next course of action. We all thought it would be surgery and a long recovery. I was completely shocked when my Dad called during his appointment to share that his treatment had worked so well, surgery would not be necessary! They would continue with oral chemo with expectation that the cancer would continue to die and there would be no new growth.

 My husband and I sold our home in Texas anticipating that we would move to Alabama in March for a few months to care for my Dad. I did not mention this in my first post, but I really struggled with being "all there" with my Mom. My home was in Texas. My life and livelihood was in Texas. I was a single woman who had very little savings, working at a nonprofit (Lord knows you do not get paid well), halfway through my second master’s degree, and unsure how to be with my Mom when I had so much obligation back home. I knew my work team was having to work harder because I was not there. And because I had no clue how long I would be in Alabama, would I still have a job? How can I pay my bills once I use up all of my leave time and I am not receiving a paycheck? I battled with this the whole time I was with my Mom. I resolved to not have the same struggles. If we needed to be with my Dad, I was going to be all there. No guilt or regrets. Besides, I knew far more now than I did with my Mom. I was more equipped. And I was going to be the best daughter and caretaker.

During an August appointment, my Dad was told that the chemo was no longer effective and that the tumors were starting to grow. In September and October, he had a SIRS-Spheres procedure. They were both successful but his recovery was very painful and difficult. His pain was hardly managed. I was able to be with him for both and it was hard to know how to comfort and help when nothing really helped.

In late October, my Dad had a scan and it showed that the tumors were gone! We were elated! He would have another scan in eight weeks. Fast forward to mid-December. My Dad went in for another scan. I was in New York with my husband and anxiously waited for his call. I was ready to hear that he was cancer free! He called but the news was not as we had hoped. The cancer returned aggressively and was worse than when he was first diagnosed. My sweet Dad was heartbroken. Another SIRS-Spheres procedure was scheduled. This time they would use chemo instead of radiation.

Right before Thanksgiving, my husband and I took my dad on a train trip through Tennessee. I could tell he was not feeling well. He did not have much energy and he was in pain, though he did not want anyone to notice. Since he had been told the cancer was gone, I assumed he was just still recovering from the October procedure. Radiation embolization is really hard on the organ. It literally kills the tissue surrounding the tumor so it is really painful. And it liquefies the tumor which causes very intense pain.

My Dad began sharing that he was having upper back pain in early December. For him to even mention it, I knew it had to be bad. I tried to push aside thoughts that the cancer had spread to his back especially believing that the cancer was gone. When he went in for his December scan, he mentioned it to the oncologist and they did a scan of his back. He was told when he came in for the third procedure, they would share the results with him and go from there.

I made sure my Dad knew that he was our greatest priority and that he was not a burden. And that we counted it a privilege and a gift to love and serve him well. Benson and I were both on a sabbatical from work so we did not have many, if any, commitments that would interfere with our care of my Dad. But he hesitated to take my offers of help and it was hard for him to ask me for help.

After his last scan, they moved quickly with scheduling the next procedure in an effort to stop the cancer from spreading. The oncologist and his team were hopeful they could get ahead of it. And my Dad trusted them. They gave him hope.

Benson and I were unable to get a flight out due to the Atlanta airport’s power being shut down so we drove. My uncle met my Dad at the cancer center on the day of his procedure as he had to have a caregiver present. The procedure went as planned. My Dad went to recovery and called me as soon as he was moved to a room. He was drowsy and in pain but they were giving him IV pain meds which were helping. He was relieved that he was staying overnight as he was sent home after the first two procedures. He was optimistic his recovery would be better the third time around. He wanted Benson and me there late morning of the next day to discharge him from the hospital.

We arrived and went to his room. He was sitting up in his bed. He looked good and sounded like himself. I asked the bedside nurse if he was ready to discharge and she shared that he would need to stay another night as his pain was not quite managed. I was relieved to hear this because my Dad’s pain was not managed by taking pills. The IV pain meds really helped alleviate the pain. He was completely content staying another night. After the nurse stepped out, I asked my Dad if he received the results of his back scan. He shared that the cancer had spread to two vertebrae but his interventional radiologist felt he could take care of it once he recovered from the procedure. I was deeply saddened to hear it spread but encouraged there was a plan.

Early evening, my Dad told Benson and I to go ahead and go to our hotel room, that he was going to rest. We left and headed to dinner. After 10p, my Dad texted me, asking me to come to the cancer center as soon as possible. I went into a panic. We rushed there and ran to his room. My Dad was hunched over on his bed in severe pain. He was upset because the nurse would not give him more medicine. He was in a regular outpatient room where meds were given every 4-6 hours. I asked (begged) the nurse to give him something. She agreed to give him his IV meds early as it was obvious he was in severe pain. We stayed with my Dad until he fell asleep.

We arrived at the cancer center by 7:30a the next morning as we wanted to catch the doctor on his rounds. I was concerned about my Dad’s level of pain and him being discharged with so much pain. When we arrived to my Dad’s room, it was empty. I asked the nurse where he was and she said he was sent up the ICU floor in the early morning hours. I was really confused so we headed to the next floor up. When I walked into his room, it was far more confusing. The room was filled with nurses, as if a scene of chaos had just calmed. My Dad had a breathing tube as well as more wires than I can recall connected to his body via IV or on his skin. He was moaning and groaning. I asked everyone in the room what had happened and what was going on. The head nurse shared that my Dad awoke around 3am in excruciating pain. They tried IV pain meds but they did not work. They took him for a MRI which showed he had multiple blood clots throughout his body. These were causing him severe pain. But the nurse stated they had him on an anticlotting medicine and they felt hopeful. My Dad quieted as the pain medicine kicked in. Being on the ICU step down floor allowed them to give medicine more frequently. When they asked my Dad what his name was or his birth date, he did not answer. But when they asked who I was, he would say “Say-ruh.” It appeared something was going on cognitively but that could also be explained by the increased meds.

Just a few hours later, a doctor and a team of nurses entered the room. I was sitting on the couch with Benson so I walked to my Dad’s bed to meet them. The doctor introduced himself. He shared what the nurse had told me about the blood clots. He asked me if I had called family in. I told him that my Dad was a private man and no one really knew that he was even there, including my Granny. He did not want anyone to worry. And why would I need to call family? He had only been in his current state a few hours and no one seemed worried. He then said words that literally took the breath out of me and caused my legs to give out. “We are past time for you to call family. Your Dad is not going to make it.” What? I’m sorry. What? I do not understand. He was fine yesterday. What do you mean he is not going to make it?

The doctor went on to explain more about the blood clots and how a person with cancer cannot be cured of them once they have them but they could try to prevent more from occurring. And that it was likely a matter a time before one dislodged and went to his lung or to his brain. He also explained that my Dad’s liver wasn’t functioning well, his kidneys were very poor, and that he was needing more oxygen to breathe. The doctor told me to consider moving him to comfort care, that it was in my Dad’s best interest. After he left, the nurse shared that the cancer was very aggressive and that my Dad would die from it regardless. There was nothing else they could do. She also shared that they felt my Dad had mini strokes and that is why he was cognitively not responding as well.

Shock. Complete shock. In a moment, everything changed. Everything.

I called family. It was hard to prepare them for what they would see. And impossible to convey to them what was shared with me.

I cannot even put into words the next 24 hours. I couldn’t make the decision to move my Dad to comfort care. That meant I was making the decision for him to die. I just couldn’t do it. I didn’t want to do it. But his pain became much worse. He was suffering so.

In the wee hours of Thursday morning, the nurse and two aides turned my Dad to his side. He had been on his back and they asked if they could turn him. He said yes. I knew in my spirit that he did not know what he was saying. As soon as they turned him, he screamed in pain. He went into A-fib. It took hours for him to calm and for them to get his pain under control. It was horrible. The nurse believed a blood clot dislodged and caused the A-fib and the excruciating pain. He never recovered. I blamed myself. I should have told them not to turn him. But they knew what they were doing, what was best for him. But I should have spoken for him! That one instance led to my Dad’s demise. And it was all my fault. That is what the enemy wanted me to believe.

After being shown scan after scan and reading every report handed to me, and after being further consulted by doctors and nurses who were telling me that at this point, it was unethical for them to continue treatment or continue finding veins for IV’s (they were having to use an X-ray machine to even find veins) because it was no longer helping my Dad but hurting him, and after consulting with family, the decision was made for him to move to comfort care.

My Dad’s last 24 hours were spent being surrounded by loved ones. He was so loved. He was not in pain. His final moments were peaceful. I held his hand as he took his final breaths. And then I left the room because my Dad was no longer there. Jesus came for him. And then I grieved. Wept. And wailed. But I had an impossible joy because of Jesus.

Friends, if you have ever had to make this decision on behalf of a loved one, there are no words to express the weightiness I know you felt. And may still feel. There are no earthly words that can comfort. You do not hold the power of life and death. And you only did what was best for the parent, child, loved one who was suffering imaginably. Sadly, you had to be the one to make a decision that most people never have to face or make.

One thing a doctor told me about comfort care that made all the difference for me was this: if my Dad could get better, he would still get better. The increase in medicine would help him not be in pain and allow his body to heal. However, if he was not going to get better, comfort care gifted my Dad time to not suffer or experience pain a minute longer on earth. For my Dad, it was the latter. And I am thankful.

I have woken from sleep in despair and agony believing that I killed my Dad. I have not been able to breathe or catch my breath because I believed decisions I made or didn’t make led to my Dad’s death. The guilt part of grief is brutal. But I know these are lies. They simply are not true. God spared my Dad immeasurable pain and suffering by taking him Home when He did. According to the doctors, had my Dad recovered, he would have faced the same fate as my Mom. His body would have been eaten by the cancer and he would have suffered. Oh, how he would have suffered. But God. My Dad is not suffering. He once was dead but is now living forever. Praise God!