Part 15: Chemo Brain
Driving up to the appointment Monday afternoon I was anxious to hear what the ‘Tumor Review Board’ had decided about Dan’s MRI results. With Dan on the fence of whether the chemo was working or not I needed to hear solid news. If the chemo was working then we would be back up to the hospital Wednesday for round three, which was sure to be brutal. If the treatment were not working then an amputation would be scheduled right away, and he would surely loose more than just a finger, possibly his whole hand. I had accepted an amputation as the end result, but wasn’t ready to accept him loosing the that much of a vital organ.
We made our way down the long corridor to the Sarcoma wing of the hospital. Our team of doctors took about an hour to gather up before they came in our room with good news. “The chemo seems to be working”, Dr. Randall said, “we can’t know everything for sure until we are in surgery, but the tumor has stopped growing so we can assume that cancer cells are being killed”.
Finally we felt a sense of relief. He went on to explain that although they were confident the treatment was effective, they did not know which grade of cancer cells were being killed off. They gave statistics on our case, only to be determined during the surgery. There was no possibility of knowing more before then. Was the chemo killing the high-grade cells, or the low grade? That was the question. High-grade tumor cells are far more dangerous and are the threatening nature of cancer as it enables for traveling through the body where the low-grade cells just sits and spreads from the source point. We needed 90% of the high-grade cells to be dead inside the tumor. If we were that lucky we would only have 2-4 post surgery treatments and some minor localized radiation. However if only 80% or less were dead, 12 more rounds of treatment would be required. As weak as Dan had already become I knew he wouldn’t survive the treatments even if he survived his cancer that long. We needed the 90%.
I put all the future case scenarios in the back of my mind for the time being. It was too much stress that I couldn’t afford to add to my already full list. We were moving forward with the chemo and would be back up at the hospital in 36 hours for round three.
Between the good news and the hot sunny weather Dan acted like he was feeling a lot better. He hadn’t spent any time with our son since he had been sick. Cole was used to his dad taking him on outings twice a week, including swimming. He felt the sting of separation the cancer was putting between them. How could a three year old understand that it had nothing to do with him personally? I pulled his tricycle out of the garage and Dan his mountain bike. Cole peddled as fast as he could down the alleyway behind our house. Dan peddled slowly following him just enough to say, “don’t go too far, turn around little boy.” I saw the happiness on Cole’s face. They resembled each other, both with pale translucent skin and freckles. Chemo affects the pigmentation in the skin, making Dan’s ability to attract baby freckles strong. All of our summer days should have been this way. We ended our activity with popsicles in the back yard, enjoying the sun. I was happy to see Dan not lying in our bed or attached to the couch as he had been the last several months. I wished that could have lasted longer.
He finished his third round of chemo the same as the first two, sick and miserable. I knew what to expect when he came home from the hospital. The symptoms weren’t shocking to me anymore, even though they still shocked those that came to drop off dinners or pay courtesy visits. Dan had become so withdrawn that it was eerily noticeable. I had been in a state of non-reality since the whole thing began, mostly so I could continue on in our morbid quest with the positive attitude that was just as necessary in making my husband well as the treatment itself.
People always wanted to know how the progress was going, and secretly wanted a glimpse at the man who had cancer; undoubtedly looking scary. After round three Dan assigned himself to the far end of our leather couch with 2-3 bins and nothing else. He would have me cater to his needs from there, replacing bins, and helping him readjust his body to prevent sore muscles from lying down for so long. He was in no state to get up and move around, or even try to function as a fully ‘living’ human being. Although his appearance was obviously shocking to others upon first sight, I had accepted it without much thought, even though I noticed him more of an empty shell this go around. His eyes were much more sunken in, dark and distant. He had lost more weight, down 60 pounds. I would put on a movie, or offer to read to him but his eyes never focused on anything, not even me anymore. I would give verbal updates about his condition and the treatments to our friends visiting. A look of shock always across their faces as they watched him just over my shoulder in the same room. I remember glancing back at Dan and then turning back to our neighbor who wore an expression of horror as she listened to me talk but never took her eyes off Dan. I stopped mid-sentence in the update and clarified that he couldn’t hear anything we were saying, “he’s awake, but he’s not totally in there”, I explained as a matter of fact.
Hearing myself say that now sounds as haunting as it would sound to others I would say it to, but then it was nothing more than part of a story. The story I was forced to tell, the story that wasn’t real, and therefore wasn’t to be feared.
Dan had chemo brain. The medicine had been killing off just as many healthy cells in his body as deadly ones. I was living with a man who was slowly dying. Half alive and half dead he was a body on my couch. His eyes were open but nobody was home. He would stare off into the distance in the direction of his view but I knew he wasn’t looking at anything. He was lost inside himself.
A home nurse had been coming to our home a couple times a month to train me on new things to keep Dan’s port sterile and functional. This time he would train me on intravenous injections and programming pumps. Dan wasn’t keeping anything down, and had abandoned all efforts to eat anything at all, taking his already thin body to a dangerous weight. The pills to alleviate these symptoms came up as soon as they were swallowed leaving no other options than to pump them straight into his system. I didn’t want to do the needles but had no choice.
My boys watched me practice programming the portable pumps while referring to paper instructions and hooking them to high levels of IV potassium fluids. In between bags I would alternate drawing drugs into syringes and shooting them into his tubes, and watch the medicine travel up toward his heart. Credits of a ‘nursing degree’ should have been awarded to me for all the things I learned and did for Dan. I always wondered how nurses could do it all day long. Seemed like such a horrible job, to care for sick people. What I slowly learned from taking care of Dan was that my love for him was increasing. He was a hollow man at this point; his lack of connection toward me became more obvious. I only felt my love for him deepen as I cared for him through acts of service. It was clearly service and not just love that I was giving him. You cannot serve others without developing love for them. I had already loved him as his wife, but there is something about loving and caring for someone through a near death experience that can’t be described. It’s unselfish, emotional, and bonding. I only felt this way for two others before I added Dan to the list. I loved my husband when I married him, but it was not comparable to how I felt about my children when they were born. I felt protective over them, infatuated with them, obsessed with the little being that I had nurtured and grown just shy of a year in my own body. Only a mother can understand the immense addiction to the well being of her child, and the undying love they feel toward them as they care for them in stages of their growth.
Testing on his blood cell counts were now conveniently done at home when the 'home nurse' came. The next day we received a phone call from our doctor instructing us to come to the hospital for a blood transfusion. Dan’s red blood cell count was too low. We had never been to the general chemotherapy wing of the hospital. It was outpatient and most cancer patience who got chemo received their treatment for 4 hours only. They were assigned to this area where they could read a book, or watch a movie while getting their drugs and then go home or back to work right after it was over. They brought Dan to one of the over-sized chairs and hooked him up to a bag of blood. We both felt faint even looking at it. I left the hospital and promised to return in 4 hours to pick him up. Two hours into my short break the hospital called me and let me know they had admitted Dan to the hospital and sent him back up to the fourth floor because an infection set in from the transfusion and his white blood cells were now dropping to a dangerous count. It seemed like every complication that could be thought of Dan would get. I was worried and frustrated at the same time. I was ready for this whole thing to be over. I was going through the motions of a caregiver and I knew the wear and tear was starting to affect me and my ability to cope.
When I got back to the hospital Dan was shivering in his hospital bed, he had a fever, obviously in pain. I tried to comfort him as I had done before but he angrily pushed me away, telling me to leave him alone. At a loss of what to do I began to take things personal. His behavior had become so passive aggressive after round three that I never knew what I would encounter in dealing with him; Dan or his evil twin. I tried to talk to the nurse about the situation. She was less than sympathetic to the emotional strain caused by all these complications. Her loyalties were to the person with the physical cancer and told me that he probably didn’t want me at the hospital and I should just go home. I had never met this nurse before and was shocked at her candor. I wanted our regular nurses I had come to know more personally who cared for us during his treatment schedule. They were kind, patient, and understanding to the shocking changes care-givers are sometimes forced to see and deal with. They let me know I wasn't alone in feeling this way. This particular nurse that day seemed to support Dan’s subconscious theory that I was the cause for his cancer and therefore a big thorn in his side that needed to be removed. Emotional abuse is common for caregivers to experience from their cancer patients but I couldn't reason that this is was what was going on.
Before going home I left Dan’s room and went to my favorite spot in the hospital, my sanctuary away from my life. The big museum like room always gave me comfort. I sat for a couple minutes reviewing what was going on between Dan and I making sure I wasn’t inventing something that wasn’t real when an older man wearing shorts, a Hawaiian shirt, and a baseball hat came over and sat next to me. He had been circling the halls several times. I recognized him. He was another person I saw at the hospital every time we were there. “This little baby of yours sure is a looker”, he announced with a large grin on his face. He told me he just became a grandpa a couple days earlier. The excitement was apparent with how much attention he was giving Ethan. I was sure he was visiting his wife for as much time as he spent at the hospital. I introduced myself. He baby talked Ethan for a few minutes more before he told me his name was Larry, and that he had Leukemia. I couldn’t believe he had cancer. He looked so happy, so healthy and vibrant. Larry’s type of cancer made it too dangerous for him to live outside of the hospital, so he was there full time, with no real plan to leave until his white blood cells stabilized at an acceptable number. It had been 6 months so far with no luck for him. He never wore hospital clothes and frequently walked around like he worked there, to keep his body active and his mind busy. He saw my upset and after talking to me explained that the nurse I dealt with earlier was the worst one of the floor and not to let her get me down. He also told me cancer was a crap-shoot and you never know how it’s going to turn out, “no matter what kind of a person you were before, good or bad. It won’t determine your fate through a nasty disease you can’t control", he explained. It made sense to me. I heard nurses in the past tell me stories of kind patients, good people who would come to Huntsman and die from their cancer when it was some of the meanest, nastiest people who would come for treatment and be cured and go on to be mean and nasty; living just as miserably afterwards as before. It didn’t seem fair. People also were known to change completely after experiencing a taste of death and that is what I felt was happening to Dan.
Larry became my friend when we went to the hospital and I wished for all cancer patients to be more like him. His family lived out of state, he hardly had visitors, but he had what he needed to get through his lot in life. He had a positive attitude and a grateful heart.
The fourth of July was a couple days away. Dan’s birthday was the day after. If he weren’t released from the hospital from then we would have to bring some celebration to him. If that were the case I planned to invite Larry. He radiated happiness even in an unhappy circumstance.
I picked up Cole from the sitter and took him home to an empty house. He ran to the locked door and began banging on it with his fist. “Daddy, open the door, let me in!”, he shouted anxiously. He had been away all day and expected his dad to be home when he got back. I unlocked the door and pushed it open. He saw the darkness and knew he wasn’t there. “Ok mongie”, he said in his 3-year-old language. 'mongie' was his term for ‘mommy’, “we can call daddy to say good night?”
“Ok”, I replied as I looked down at him and grinned. I picked him up and held him in my arms. I put him down to bed while talking about daddy’s birthday that was coming up and asked him what we should do to make him feel special. Life for Cole needed to go on, even with my sadness in feeling our family was falling apart. I focused on my husband being well enough to come home for the holiday and his birthday so we would have a couple days together at home before it was time for round four. Things felt like they were speeding up, heading for the surgery faster than they were before. We just needed to get past the fourth round of chemo. He would get a break for his body to gain strength for the surgery and I was hopeful our relationship would regain strength during that time too.
